Nip It

Special Day, Special Friends and a Golf Tournament

2012-02-03T10:43:00.000-08:00

Today is my last official day as an employee of Rady Children's. I am trying not to be overly emotional about it. It helps that I had visitors this morning and that I got my laptop back today. It also helps that some very special friends are putting on a golf tournament in my honor on March 10. You see, now that I am not working, I can no longer accept Disability Payments from the State of California. I must now apply for Social Security Disability. I have been told that it can take up to a year to actually start receiving these payments. So what do we do in the meantime? That is a good question. Luckily, my parents have offered to supplement our income and Steve's family is helping a bit too. Plain and simple, especially considering my increased medical expenses, this household can't run on a teacher's salary alone.

This is where the golf tournament comes in too. Especially since it is not tax deductible, I am truly honored by the number of donations that we have received. Many from people we do not even know. I am even more honored by the work of the tournament committee who are sacrificing time out of their already busy schedules to get this done. I feel loved.

On the health front, I had a blood transfusion on Monday to relieve me from anemia. I feel so much better. I no longer get winded walking around my house, there is pep in my voice and I even did some laundry yesterday. The other side, however, is that I have not been able to have chemo for the past two weeks because my platelet count is dangerously low. Dr. Boles says not to worry and that my blood chemistry appears to show that my liver is functioning a little better than it was before. This is very good news. So, my goal is to have chemo February 13. It will undoubtedly wipe all of my counts out again, bring back my anemia and make me sick. I can handle it, if I know it is working.

All in all, I am really looking forward to the golf tournament, where I will speak and participate where I can. Please check it out using this link, if nothing else just to admire the good work my friends are doing. I take great pride in these friends. They are loved more than they know.

My Road to Depression

2012-01-22T05:32:00.000-08:00

This morning I awoke with words floating through my head and I guessed it was about time I write in my blog. My laptop is still under construction; So, I am struggling through with Steve's. The keys feel foreign to me and I am not sure it it is because it is 4:30 in the morning or because the keys seem to sit slightly on the left than where they do on my lap top. Either way, I am struggling.

For those who have not already guessed, I have also been struggling with depression as of late. I think it all started when I broke down and told my mom that I should not be going on our DisneyWorld trip, guessing that I was too weak. I was, but I also knew that a lot of people had put a lot of energy into the trip, Even more than that, I wanted this trip for my kids. I wanted them to be carefree, for me and Steve to be reminded what that felt like and to make those memories. I had it all built up in my head and felt trapped. I was going.

Carefree did not happen. I ended up in the hospital for three days upon our arrival. Extremely dehydrated, with a possible intestinal blockage. While in the hospital, I was told I was crazy and given a brain CT to make sure my cancer had not spread. It was a bad experience, but yet it was needed, as I was discharged hydrated and functioning.

The rest of the trip proceeded, but I still found myself weak and unnerved to be in a wheelchair. Granted, it was needed. We saw Harry Potter World and I rested in First Aid for three hours while Steve and the kids went and drenched themselves on this ride or the other. Steve and the kids went to DisneyWorld the next day without me, we rested the day after and went to Epcot Center for the last day. We did have a lovely time at Epcot and I did not even have to rest in First Aid.

Upon return from our trip, doctor's appointments and chemo awaited. I was exhausted, but also knew that chemo had waited long enough. This particular chemo caused horrible nausea. I was not holding food down or only in very small doses. As I recovered and I am really still working on it, this is where the depression really started to hit. And I did not have too far to fall. I always try to remind myself that I did not ask to be a stage four cancer patient. I cannot blame myself for what my family goes through with me. Easier said than done.

Still, I have not want to do anything, respond to anything,or even get off my couch. It is a strange feeling for me that I am learning to deal with. I am getting help now. And I do not want all to think this an open invitation to call and check on me. I would rather not answer. Right now, I just need my time to process. And I will. And that will be that.

Keep On Keeping On: Decorating Cookies for Santa

2011-12-21T05:37:00.000-08:00

Yesterday morning, I awoke in a lot of pain. After dosing myself up on Norco and Ibuprofen, I knew the couch would not be my friend for the day. I also knew I had to come up with a distraction otherwise I would go nuts. My energy level was low. Yet, after doing my morning yoga routine, I felt I could handle taking my dog for a walk.

It was my toughest walk to date. Maybe because I had not done it for a while; maybe because I was in pain; maybe both. I sat down twice. I got extra irritated at my dog. But I made it around the block and started to feel a little better upon my return. It was then that I started to drink extra water. I am not a water drinker and some days I am adversely opposed in general. However, it seemed to be the thing to do yesterday morning. So, I indulged. I felt even better still.

The house was bustling. I cannot even tell you what I did in the subsequent morning hours. But thanks to my friend Barbara, I decorated cookies with my kids yesterday afternoon. I have never been a baker. The thought of rolling out dough and using cookie cutters followed by mountains of frosting and sprinkles has never appealed to me as an adult. Yet, Barbara and I came up with a plan. She suggested that she bring me plain, sugar store-baked cookies and we could decorate them without going through the trouble of baking them. .

Me and the kids, working away!

We all got into it. Even Harrison. In total, we decorated 24 cookies. I felt like a kid. And, I loved spending time with mine. Barbara had given me a gift far greater than simply running an errand for me. Decorating cookies was like an awakening, keeping me distracted and nearly pain-free until late afternoon.

Will distractions, water and a walk work like this every day? I hope so. But if not, I know my couch is always here, like an old friend. And I will just keep on keeping on.

Our Finished Products

Rob Cares Guest Post

2011-12-20T11:21:00.000-08:00

I wrote a piece about my caregiver, Steve for my friend's blog. He published it today and so I thought I would share it here as well. Rob provides a remarkable service for cancer caregivers, lending support and resources to those caring for cancer patients. He is inspiring and I would encourage you to check out his site. In the interim, to view my post, please click here.

Cancer Has Progressed

2011-12-17T06:00:00.000-08:00

Yesterday, we learned that my cancer has progressed in my liver and is also confirmed in my lungs. In addition, I have a mass under my arm that we are assuming is a tumor. No need to biopsy, thank goodness. Not such good news.

Holding Steve's hand looking at the scans yesterday, I was overwhelmed. We knew I had two nodules that they were "watching" in my lungs...but to now have 7 or 8 confirms that the two original nodules were cancer. Also, the pain in my side which I originally thought was from my back flap reconstructive surgery was not so much from the surgery but from a new mass residing with my lymph nodes, back where my original cancer was in 2009. I guess now there is no need for me to curse the surgery, as I had been doing from time to time as a result of the constant pain. That tissue is all soft and good.

So, what is the plan? To switch to UCSD. I cannot begin to describe how cared for I felt yesterday by Dr. Sweet as he scrambled to get answers and conversed with Dr. Boles, my new UCSD Oncologist about a plan for my care. We were in his office for an extra 90 minutes....but the outcome was well worth the wait.

One thing Dr. Sweet suggested was some radiation on my side for the pain. As many of you reading this may know, since I already have been radiated on that side, we still are not sure if this can be done. However, if it will get me off some of these pain meds...I am all for it. That appointment is next Wednesday.

I think the most disheartening thing was that we learned that my fatigue is likely disease related, not chemo related. This is really hard to take because I am really tired. Dr. Sweet is going to try to qualify me for a transfusion for my anemia in order to give me more energy for our trip. I hope he can.

Through a message from Dr. Boles through Dr. Sweet, I learned that I am not a candidate for the clinical trial at City of Hope, but my progression will perhaps get me onto the clinical trial that I had been hoping for at UCSD. I see Dr. Boles immediately after my vacation and she asked that I arrive with scans in hand. They have been ordered and ready for pick up.

We are very scared. Yet we know that nothing really has changed. We knew triple-negative breast cancer is quick to spread. We knew that we needed to find a chemo drug that worked. All that has happened is that we have not found a chemo drug that works. We have only tried three. There are more out there. We have hope.

Yesterday is a bit painful for Steve and I to relive. So, I ask that we not receive a lot of questions at this time regarding my treatment. I will try to blog through out the week to keep all updated.

On a positive note, I had a little conversation with my body yesterday and came up with a theme song: "I am a Believer." I think my body needs to know that I believe in it regardless of what the scans show. And there is some deeper logic to this too; so you do not think I am completely crazy. I ask that when you think of me, think of this little jingle please. Maybe I will even try to come up with alternate lyrics for it...just for fun. I have nothing but time, after all.

Kindness Made My Day

2011-12-16T05:38:00.000-08:00

On Wednesday, I had an appointment with plastic surgery. I have been having quite a bit of pain on my right side that seemed to be radiating from the muscle they moved during reconstruction. I wish this was the case. Through her extreme due diligence, Cindy Carson, P.A. found a 4 cm. mass on my right side. My mom was with me, thank goodness, as it was an emotional moment. Though, at this point the mass could be anything, like a mass of fat or an angry lymph node, but it would have to be checked out. Luckily, I had a chest and abdomen CT scheduled for the next morning.

Wednesday night was Madison's "Holiday Sing". Arriving late for a number of circumstances, seats were at a minimum. In fact there were very few seats left at all. However, while walking through the school's courtyard, an acquaintance offered Steve and I her seats in the front row. Completely unsolicited. She said she was going to stand anyway as she had a toddler in tow. I was not eager to take someone else's seats but also knew my chances were slim to none of sitting anywhere close to my daughter. Either way, her kindness warmed my heart and though she did not know it, put a positive spin on what was a scary day.

After returning home, Steve's brother called to let us know that he had received a $100 gift card from Steve's cousins, Kimmy and Mark to help with our trip. Wow, was I all could think. It was like someone from above had not intended for us to have such a scary day and was trying to make up for it. Give us hope. Show us kindness. And that made my day.

Oh, Christmas Tree

2011-12-07T05:29:00.000-08:00

Mornings are my own,
Early though they seem.
I arise without a peep,
Make coffee, write, gleen.

Special time to be had,
Lights shining low.
Computer is my company,
Screen shining aglow.

But in the Christmas season,
Another friend shows true.
It is our Christmas tree, lights blazing,
Familiar ornaments speaking anew.

It stands to the ceiling,
Its comfort a large span,
Its branches may be fake,
But its spirit is unplanned.

A familiar friend, you are,
Oh Christmas tree to me,
Your glow warms my heart,
Reminds me I am not alone, you see.

My spirit continually searching,
For the secret that cancer aims to tell,
My Christmas tree is a reminder,
That I am grounded, unspelled.

A Walk Up Hill

2011-12-06T08:45:00.000-08:00

Every morning, I take my dog for a walk. I do so for his benefit as much as mine. He needs the exercise, as do I. This morning, I changed up our route. Instead of the easier walk that I normally do, I walked down to the Madison's school to take care of a little business, tying Cooper up outside of the school far from the classrooms. It is a beautiful brisk morning, sun shining brightly despite the chill in the air.

The walk down hill to the school is about 1/3 of a mile. I have walked it many times before, in earlier years, walking Harrison to school pushing Maddie in a stroller. In later years, walking home on starry nights from school events where parking would have been more troublesome than walking. Other times, riding bikes to the school to practice bike skills/safety with the kids. The exercise has always done us good, and our proximity to the school is really one of the best things about living in our neighborhood.

My chemo makes me extremely winded. Climbing the stairs in our split-level house, especially both sets, like if I were to go from the garage to the kids bedrooms, makes me winded. Walking sometimes even a short distance does the same thing. This week, for example, on my walks around the block, twice I have had to sit down on the curb for a few moments to catch my breath.....and this is walking the most flat route possible.

So, this morning, imagine my surprise when I walked uphill from Madison's school without having to sit down. Tired, I am. But I made it home practically with ease. I am preparing myself for our upcoming trip by trying to push myself a little bit. We plan to rent me a wheel chair for the parks, but I do not suppose I will be in it the entire time, nor would I want to be.

For me, this morning's walk was a blessing, for I am worried about slowing my family down by not being able to keep up with all of the activities that will be available to us in Orlando. After this morning's walk, I am encouraged. Maybe tomorrow, I will try the same walk again.

A New Dawn

2011-12-05T05:35:00.000-08:00

It was 6:40 yesterday morning when Cooper jumped onto the couch with mouthful of socks, his way of telling me it was time for him to go out. I had been dozing on the couch, but even in my drowsy state, I remembered that sunrise would occur around that time. I hopped up to let him out.

Our backyard faces towards the East. I could see the sun's reflection on the mountain in the distance and a rush of gratefulness swept through me, much warmer than the cold air I felt as I opened the door to put Cooper out. It was a new day. I was here to see it.

The trauma of the night before was unrevealed to me as I had not reached for my phone. In that moment, I knew that I had a new nephew, but I was not sure how and when he made his way into this world. The sun rose as I found two texts from my brother.

Jedidiah Hallsted Dale had been born around 1:00 a.m. via c-section, after more than 13 hours of labor. It took three doctors to retrieve him from Kelly's petite body. She lost A LOT of blood, as the bleeding did not stop readily. My brother undoubtedly saw his life flash in front of his eyes. My heart sank. This is not what I wanted for him. My sensitive brother (and Kelly) who have flown 1,000's of miles to help me through my cancer journey had just had what should have been the happiest experience of their lives turn nearly to tragedy. But not quite.

When I saw the new dawn yesterday, I thought of how their lives had new meaning and of how new beginnings bring new hope for bright tomorrows. I know they have plenty of those ahead of them. Jedidiah is truly a blessing. I can hardly wait to meet the little guy. To hold him and tell him all about his daddy and how much I love his mommy. To spend every minute I am able wishing for him all the blessings that have been bestowed on my two kids. Wishing these same blessings for Darin and Kelly.

I do not know how much time I have left. It could be five years; it could be one; and it could be 50. After witnessing from a far all that Darin and Kelly had to go through to bring little Jedidiah into this world, I cannot imagine not living to see him graduate from high school, college and even get married. Hope....isn't that was the dawn is all about?

Come Visit Me

2011-12-01T04:20:00.000-08:00

I took myself off the grid yesterday. Why? Mainly because my finger tips were peeling and something about playing on my iPad did not seem like a good fit. I was lonely. I was ancy. I felt miserable; though, I tried on several instances to pull myself out of it: I took a bath; I walked the dog; I ran a quick errand; and, I pushed myself a little to accomplish a menial task or two. Still, it was a fairly miserable day.

It is a strange feeling to be ancy and have no energy at the same time. It is almost as if there is bouncing ball inside of me, a constant pinball game in motion. I think that is why the distraction of this blog, Facebook and Twitter are so good for me. But I can tell you what would work better: a visit from a friend.

Yesterday, someone stopped by just to give me a hug. Another friend came by to take Maddie to gymnastics. Both times, I visited for brief moments. Not to diminish what either of these friends did to help that day; they were wonderful. But honestly, I think the biggest help they gave to me was to help to get me out of my own head for a few minutes.

I did not even pick up a book or a magazine yesterday. I suppose I could have. This is the buggar of it all. I just did not feel like doing anything. However, if someone would have come and sat down in my living room, I would have had no choice but to talk and maybe even laugh a little.

Another factor that is hard to explain is the fact that I will more than likely never come see you. Sounds awful, doesn't it? It sounds down right lazy as I write it down. However, my reality is that by the time I expend the effort to even organize myself to leave the house, I am already spent. This does not include any primping I might want to take on, nor does it include feeding myself, etc. Just organizing. Grabbing my keys, finding my sunglasses, making sure I have my purse and my cell phone. My big outing yesterday was to the bank. I had prepared myself to run two other errands, but by the time I got to the bank, I was so tired that I could not fathom driving myself anywhere else.

Which leads me to another impediment: driving. Driving stresses me out these days. I worry that I am too tired to drive and put myself and others in danger when I am on the road. I avoid it, preferring to drive only between the hours of 10-2 and only short distances at that. Writing this, I sound like an old lady. I remember my father-in-law telling me the same thing about his preferences for driving. He was 70. I am 40.

Anyway, with this blog entry, I officially let the cat out of the bag. The best thing you can do for me? Come visit me. Maybe not always unannounced...but maybe do not give me too much time to think about it, either. Don't wait for me to call you. I will call, do not get me wrong...but time is an interesting character these days. I have a concept somedays...some days it completely escapes me like the leprachaun, leaving the house in shambles as it searches for its pot of gold.

In no means do I write this to complain, either. I have a huge network of support. A network that includes very busy people, wonderful people. However, I just want to make it known my thoughts and feelings, as is the purpose of this blog...so you will all know. Just in case you should ever be in my neighborhood.

Pure Heaven

2011-11-26T07:23:00.000-08:00

Yesterday,
Not a good day for me.
Lethargic and dehydrated,
Nothing helping any more than the next, maybe.

The day was a struggle,
And though he was sick,
He was positive all day long,
Even decorating the tree, lickity split.

Yet this morning so early,
For him the time may be,
He bounds up the stairs,
Full of energy.

"Five minutes until sunrise!"
It is kind of our thing,
Beautiful thought,
On this gorgeous morning.

We hold hands as it rises.
Cancer far from my thoughts.
He goes back to work after,
Trimming plants, taking trash out.

How does he do it?
I am sure I will never know,
His strength and his glory.
Pure heaven bestowed.

Xeloda is Not Finished With Me Yet

2011-11-21T06:19:00.000-08:00

Xeloda is not finished with me yet. Although I stopped taking the pill on Tuesday in order to heal from Hand Foot Syndrome, a serious case of nausea started yesterday afternoon. It took me a couple of hours to figure our that the nausea had returned and all night long to start to get "ahead" of the nausea.

I have a suspicion that I am going to suffer from the dreaded "week three" of Xeloda side affects, as I did with my last dose. From what I have heard, I fear this is a common phenomenon. Time will tell.

Of course, I also spent the weekend putting others' needs above my own. I understand that this is a time where I should be doing the opposite....but when I look back at what I did this weekend, I really would not have had it any other way. My weekend went something like this:

Friday: Together with the Young Survival Coalition, Madison and I dressed as a beauty queens and went to cheer for the Komen for the Cure 3-Day Walkers. I was so proud of my girl. I was equally proud of the 3-Day Walkers, who all walk so maybe my girl will not have to worry about breast cancer. Though, I was tired, I knew that exposing Madison to this environment would help her down the line.

Friday night, I went to my friends Silpada Jewelry Party. I was exhausted but this friend has been very good to me and I wanted to be there for her. Plus, who can resist Silpada jewelry?

Saturday: Harrison had a soccer game; Madison her last gymnastics meet of the season. How could I miss either of those? It gives me great joy to see them smile as their list of accomplishments continues to grow. Proud mommy moments.

Saturday night was my very good friend's 40th Birthday Party. Steve was under the weather, as was I. But, if there is a group of friends to make the effort for, it is this group. They do so much for us; even designating two chairs at the party for me...so I could sit and enjoy the festivities. When I was not sitting in my chairs, I was dancing. I would get short of breath and have to sit down, but it was great fun. Plus I knew it did Steve and my friends good to see me out on that dance floor. They needed that to lift their spirits. Heck, I needed it too.

Sunday: More soccer. The last game of the year was yesterday morning. Our boys took first place for the league. No matter how I was feeling yesterday, I would not have missed seeing the boys rejoice as their victory was declared. Another proud mommy moment.

When we came home, coming down with a raspy cough, Steve took a three hour nap. I needed one too, but I figured, resting on the couch was ample enough for me. Maybe I was wrong.

So thinking about how crummy I felt yesterday afternoon. last night and this morning, I realized that in addition to week three of Xeloda, I have not followed by body's inherent need for extra care all weekend, choosing to take care of others in place of myself.

Or was I?

Cheering for the 3-Day Walkers made my heart flutter. My proud mommy moments did the same. My friend's 40th birthday party gave me a chance to relive the fun times we had with this group in younger years. It gave me a chance to hold my friends close and tell them that I love them. I want them to remember me on that dance floor, living it up, bald head and all. Not that I am planning on going anywhere. But just in case I do....those memories are my gifts to them. Being there are my gifts to them. It is the least I can do.

So is Xeloda finished with me? Maybe not. Chemo drugs tend to have lasting side affects even when you stop taking them. However, I will focus on taking care of me for the next several days and will be all rested up for Thanksgiving by Thursday. Gobble, gobble.

Hand Foot Syndrome

2011-11-17T06:12:00.000-08:00

This week, I suffered from Hand Foot Syndrome as a result of my chemo therapy, Xeloda. On Tuesday, Dr. Sweet ordered that I stop taking Xeloda for the time being while my hands and feet heal. While I am not there yet, I suspect in the next couple of days, walking will no longer be painful and I will be able to have full function of all my fingers....at least I hope.

Since this side effect was such a mystery to me and many who I talked to it about, I wanted to post a bit about it here, so as to help diffuse any questions surrounding my current condition.

Hand Foot Syndrome is explained on ChemoCare.com as:

Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles. The redness, also known as palmar-plantar erythema, looks like sunburn.

And I can tell you, it feels like the worst sunburn you ever had in the most moronic locations. My hands hurt, a tightness I have experienced through my many summers growing up as a fair-skinned child playing in the hot, Colorado River sun. My feet were tender to the touch and excruciatingly painful. Walking distance or quickly was out of the question. I also had chills similar to the ones you get when you have a severe sunburn. It has been an awful couple of days.

Currently, one of my feet is pealing and the other has not reached that point yet. My hands have not started peeling at all. I am not sure that they will. They are still stiff, however. My lifesaver? My good friend Cathy Northcutt brought me cotton gloves and Renew Intensive Skin Therapy Lotion by Melaleuca.* The minute I put it on my hands, it felt like a skin barrier covered my fingertips. I could type without pain. I applied it four times a day to my hands and my feet and that with some Tylenol, ice packs, and even a cold beer can (thanks, Sandra and Sharon!) has me on the mend. Of course, temporarily halting the Xeloda was a big help as well!

I see Dr. Sweet again on 11/22, and my next chemo infusion is 11/28. Technically, this is when I will re-start taking Xeloda in oral form, as well. I am not sure what Dr. Sweet will recommend that I do. While my hands and feet feel better, stopping the Xeloda is a really mixed bag for me. We still do not know if this chemo regimen is working. If it is, do I really want to stop it? I am hoping there is a compromise .... like maybe taking a lower dose of Xeloda? The pain in my liver is gone; this to me means that maybe this regimen is working. Will the pain return in the next two weeks while I am not on chemo?

Dr. Sweet is very pro quality of life. So am I. Right now, I cannot walk my dog and I have not been to yoga all week. This could not be good for my cancer fight either. My last post was about choices and it seems like this post is as well. These are the choices cancer patients face every day--I am not alone in this debate.

Thank you for all your care and concern this week. Your support and kind words have meant very much to me.

*If you would like to know more about Melaleuca, I would be happy to put you in contact with my friend Cathy.

Ode to Kaiser Permanente

2011-11-16T07:58:00.000-08:00

I am a Kaiser baby. So is Steve. Children of teachers, Kaiser is generally the chosen HMO of the Teachers' Unions, and as Steve is a teacher, it is the only insurance that both of us have ever known. Also five minutes from our house, our children were born there; I have had 30+ years of excellent neurology care for my epilepsy first by Dr. Rosenberg and second by Dr. Kaplan; we adore the our pediatrician, Dr. Cantrell; and, my doctors have taken superb care of me through my breast cancer fight.

Now, in a fight for my life, we have chosen to leave Kaiser for a PPO form of insurance, most likely to receive care through UCSD. In my mind's eye, I know this is the right decision. However, seeing Dr. Kaplan yesterday, potentially for the last time, my heart told a different story. Always my protector, Steve had not wanted me to go to this appointment alone. His foresight amazed me as pulled out of the Kaiser parking lot with tears streaming down my cheeks. He knew it would be hard for me. Deep down, I knew too, but like usual, I just chose not to think about it.

I have to admit, I was excited when Dr. Kaplan told me that UCSD has an Epilepsy Center. Fancy. Scary. What if they do not like me taking Tegretol? The drug that has been working so well for me since I was 12 years old, it is NOT the most state-of-the-art for the type of seizures to which I am prone. I know I have to be prepared for a slew of tests and a change in medication. However, what if I have a seizure in the interim? I would loose my driving privileges again, a loss of freedom that would be tough to take. Again, I choose not to give these fears too much heed. It will be what it will be. It will be up to me to be my own advocate.

My emotions from yesterday gave me a sneak peek as to what it will be like for me to leave Dr. Sweet and the rest of my care team. I will add them to my Christmas card list. I will make every attempt to keep in touch and who knows, maybe we will even be back, one day. With Kaiser, I feel safe. In the coming year using a PPO, if I cannot re-create the same safe haven, we can always choose to re-enroll with Kaiser during Steve's open enrollment period, this time next year. I doubt that will happen.

So, what is ahead for me? CHOICES!!!!! For all intents and purposes, I may never have anything else but the same chemo I am having or another common chemo regimen for the rest of my life. This IS a likely scenario. However, if there is a cure out there, whether it be at UCSD or Vanderbilt University, I will now have the choice and my insurance coverage will follow.

Coming into this season of Thanksgiving, some of my friends are posting what they are thankful for each day on FaceBook. I love reading these posts and sharing their joy. I have to say, though outside of the obvious friends, family, etc., topping my list right now are three things: that Steve has a job, so we have access to a great group health plan; that I have wonderful parents who have helped us sort through all of the insurance red tape, find and pay for the insurance plan that is going to work best for us; and lastly, I am thankful for HIPPA, the law that insured that I cannot be discriminated against as we make this change.

Living from test to test, scan to scan, access to a great PPO that gives us choice and freedom to move between health care institutions is the best gift for which I could ever ask. And for this I am most thankful. It has given me hope.

Cancerversary: November 12, Two Years

2011-11-13T06:17:00.000-08:00

Cancerversary,
Yesterday was mine.
Two years, gone like 10,
Body torn and insides blind.

The day came and went,
Without celebration and cheer.
For I am still fighting,
Fighting harder this year.

Overwhelmed is my mind,
Good days are few.
Cancer teaches nothing,
Yet everything is anew.

I learn every day.
Myself, I am still exploring,
For I am as much the mystery,
As this senseless disease, imploring.

But what I have learned,
I value so dear.
Not ashamed to admit now,
I live every day with fear.

Not ashamed to cry,
Tears stream like a sheath,
Like pages of a book,
Giving way to light beneath.

My light shines brightly.
My soul tells all.
My strength is growing.
My light brightens tall.

Love is the answer,
To this silly game.
He will love me through it,
The line behind him, not vane.

God, family and friends,
Will not let us fall.
Blessed are we on this day.
Cancerversary, and all.

Weekly Update

2011-11-12T05:08:00.000-08:00

To sleep at 8; awake at 4. That is eight hours of sleep, right? I do not think I moved a muscle all night long. If there was one side effect of chemo that I wish I could eliminate it might just be the reliable alarm clock that goes off in my head right around 3:30. Who am I kidding? There are so many side effects of chemo that I do not think I could choose just one. However, this morning, my undesirable sleep pattern is the front runner. Something tells me that I may be able to alter this sleep pattern rather simply: STAY UP LATER. I have considered this often. However, around 7:00 every night when every muscle of my being is crying out for bed, it is easy to forget the game plan. Hence, the cycle continues.

This week has been full of ups and downs. Number one down: chemo induced stupor. Or maybe it is the fact that my youngest has pneumonia. Not the walking kind. Where did that come from? As I filled my cup with Emergen-C this morning, I contemplated this fact. Surely, her cough alarmed me the week through and her 103.7-degree fever alarmed me the night before last....but pneumonia? I want to snuggle with her so badly, but also know that my white count is probably actively dropping as I type this, as it traditionally does 7-10 days after chemo. I keep my distance. It kills me.

A shining light in this week: a beading workshop sponsored by Young Survival Coalition, or YSC. One of my YSC colleagues picked me up at home as I am too tired to drive, mostly, enabling me to attend. I had never "beaded" before and it sounded like fun. Secretly, I also knew that I could use more time with my YSC family, a fantastic group who have provided vast knowledge and support throughout my cancer journey. The beauty of it is, we are all women who have suffered from breast cancer before the age of 40. This group is special. We laugh, we tell stories, talk about doctors and what comes next, even when we do not exactly know what comes next. After the beading workshop, I came home charged and invigorated with bracelets that I made for me and for Madison.

Last night, we celebrated my mother-in-law's 75th birthday. Now suffering from advanced Parkinson's Disease and increasing dementia, Nancy lives in assisted living. Dear people, truly, Nancy and Milt (deceased) raised a wonderful son. Despite her problems now, Nancy will always hold a special place in my heart. A very kind soul, she is the type who adopted wounded and stray animals, whatever they may be (she is famous for knowingly feeding raccoons and possums). She liked to tinker. It was she who would jerry-rig the air conditioning in their old motor home. A beautiful soul, she currently cannot keep her words straight and loses track of her surroundings. However, she maintains the pure heart of a child that I grew to love her for. Last night, we shared stories about her around the dining room table and she smiled and even laughed a little. Pure joy. What a gift.

The perfect cap on my week was learning of our upcoming Disney World trip. My brother-in-law, a noted Optometrist who has spent his career building a brilliant practice and network of advocates in his industry is putting together a dream trip for us to Disney World at Christmas. Eric has spent his week calling in favors of his colleagues and travel agencies, and we have successfully booked a room for the week after Christmas in Orlando. It is my dream vacation. I can hardly wait to experience all that this trip promises. I will be forever grateful to Eric and Lorie for making it possible.

Well, it is now 5:00 and I am not sure if I am going to make it back to bed. I will definitely need a nap later. I do not hear my daughter coughing and that is good. I know she and I will be fast buddies watching movies today....not snuggling, of course. Separate blankets and cups. Both of us drinking lots of water for very different reasons. And one more thing...I had a massage yesterday from my friend Holly. Many thanks to her and for Terri at Home and Soul for making that possible. I am back in balance and ready to take on the world. From the meal delivery to the massage and Reiki, to those who just text to say hi, thank you to all who contribute to making that possible.

For Your Cancer Survivor, Be a Part of It

2011-11-06T20:53:00.000-08:00

Today, was the Komen San Diego Race for the Cure. My colleagues started a team in my honor called, Racing for Marsi. It was a very special day, made even more complete by the surprise visit from my brother all the way from Portland. The events of the day made me feel all warm and fuzzy inside, like a great big hug.

I was too tired to walk the race. Heck, I was even to tired to find our team meeting spot. I gave up, texted my location and sat and waited for those to find me. Luckily, my colleague had offered a wheel chair for my use during the race. I used it. I loved it. I walked the start and the finish and took rides mostly the rest of the way. This is the definition of chemo tired right here. Pure determination was not enough for me to push through the race...but the love that surrounded me, sure filled up my tank.

Reminiscing about how special being surrounded by our group during the three-mile walk, my husband and I came to the conclusion that people just really do not understand how truly special participation in an event like today is to a survivor. So, as I was trying to decide how to write about today in my blog, I decided I would try to stress this fact: BE THERE. Be a part of it. Mind you, there are several ways to be a part of it outside of actually walking the race. I received several thoughtful text messages the morning of the race as well as several emails. Each of these is very special to me, as well.

However, if you are able, I would encourage you to attend the walk, if only just once. Man a booth. Meet for pictures. Be a volunteer at the event. There is nothing quite like the electricity in the air. There is nothing quite like watching grown women cry happy tears just because they feel loved. There is nothing quite like witnessing complete strangers hug each other like they are life long friends, bonded in the survivorship sisterhood.

This post is in no way intended to lecture those who could not participate this year, but ,more about us realizing that people just do not really "know". Until you have felt that invisible warm hand of acceptance holding your own, how would you? We also thought about the fact that our invitations to join our team, did not stress this fact. We never made it out to be the amazing event that it is. So, by writing this blog entry, the main idea I wanted to express is: BE A PART OF IT. For your neighbor, your sister, your daughter, your teacher, your mother, your colleague, your cousin, BE A PART OF IT! You will be thankful that you did. Your tank will fill up, just like mine.

Team Racing For Marsi also gave me a basket full of goodies, including jammies, movies, magazines, a personalized handmade calendar and a new Flip Camera, for me to be able to make a video journal. I took my first pass at it tonight. Click here to enjoy!

Another ER Visit

2011-11-06T04:05:00.000-08:00

Now I lay me down to sleep,
I pray the Lord my soul to keep,
If I shall die before I wake,
I pray the Lord my soul to take.

I taught my daughter this poem last night. I talked to her about talking to God. Intuitively, she asked, "Why do some people talk to God before they eat and some people don't?" I did not really have an answer. So, I just said, "It is just a matter of preference, I suppose."

Except for on holidays, typically, we do not pray before a meal. However, in typing this now, I think I will show her the prayer that Pappy Ellis used to say before every meal. I have a laminated copy on my refrigerator, given to me years ago by my Aunt Anne Laura.

Generally, I do not write about my religious beliefs in this blog, but yesterday was a good reminder of my need for faith, as I had another visit to the ER.

Around 3:00 p.m., symptoms that had been plaguing me all day came to a head. While I thought it was the sudden change to cold weather, chills had riffled through me since the night before. I had taken two hot showers and still, was not able to warm up. I also had a low grade fever and a rash stemming from the area surrounding my new port placement. Yoga had been particularly hard for me yesterday and not because it was a hard class, but because I could not relax. All in all, I was just feeling odd. So, seeing as though I am a chemo patient and had surgery on Thursday, I called an advice nurse. I was sent to the ER.

Allowing Steve to stay home and grade papers, my dad drove me and sat with me for the two hours it took them to take blood samples and put me into a room. I had a very nice room indeed, complete with a new T.V. It was very much worth the $50 co-pay I was going to be charged. They started an I.V. and drew all sorts of blood, mainly testing for sepsis. They also took a chest x-ray.

I had a very handsome, extremely nice doctor. He said that my "levels" were all fine and I should be able to fight off or handle any sort of a virus/cold. The rash on my chest is more than likely from something they used during surgery that my chemo-sensitive skin did not like. What a relief. Steve came to pick me up shortly after 7:30.

For an ER visit, it was a pleasant experience. However, I could not help but be reminded of a couple of ER trips ago when they first told me my cancer had returned. Last night, walking through the ER on my way to check out, I saw the hallway where my bed was at the time I heard the frightful news. Shivers went up my spine as I passed this location. I do not think I will ever forget how I felt that day or the nurse who held my hand.

With permission from my handsome ER doctor, I am off to "Race for the Cure" this morning. Saddened by the chaos that I caused yesterday, I know that the "Race" will lift my spirits. I am looking forward to crossing that finish line.

Port Placement and Oncology Visit

2011-11-04T05:54:00.000-07:00

I am here. I am alive. More alive than I felt yesterday, after not eating anything until 5:00 p.m. I did not think I was going to make it. Truth be told, I almost lost my cookies all over my mom's car as she drove me home from my procedure. Of course, this was after I had eaten a half of a turkey sandwich in the recovery room.

Yesterday, I had my port placement. It is on my left side slightly under my collar bone. The bandage is small. My surgeon was Dr. Deree. The same surgeon to which we entrusted my mastectomies. She is wonderful and by this time, I consider her more like a friend. I trust that there will be minimal scarring and no problems with the port because I know she would not have it any other way. I was awake during the procedure. I even managed to crack a joke or two. The nurses were awesome, one of which loves plumerias and is off to Kauai on vacation next week. In an odd way, having her as my OR nurse was comforting, making me feel like my sister-in-law Kelly (a nurse practitioner) was by my side. To those of you who know Kelly, you understand why.....the girl loves Hawaii and plumerias. She and Darin were married on the North Shore of Oahu.

This morning, I am a bit achy, but I am not in pain. I should be able to have chemotherapy Monday using my new port. The intense headache that dilaudid could not even clear dissipated with the help of an ice pack on the back of my neckand a little quiet time on my couch. My nausea went away, as well. My mom was a rock star, once again. Steve too. My dad called to check on us regularly. I am sure I was supposed to call others, or maybe others even called to check in. However, my head was ringing so that if it did not have something to do with Steve or my kids, I just did not care. I was in bed at 8:30 last night. I woke up once during the night, took some Norco for pain and went back to sleep. I am up early, but there is nothing new about that.

All this being said, on Wednesday, we saw Dr. Sweet. I was having a terrible day, but decided that maybe it was good that he saw me in this state. I did loose my cookies that day, in the middle of the doctor's office waiting room. I had sent Steve to get me prescription in the pharmacy. In his absence, an angel who was the companion of another patient, came and rubbed my back during my troubles. She was an older women and I really felt blessed at that moment. It was a horrible feeling to be alone, in a wheel chair (I was not walking at that point), throwing up and in the middle of a waiting room. I would not wish that on anyone.

Our visit with Dr. Sweet was productive, despite me feeling so poorly. I exclaimed that I was not handling these chemo therapies well. That is not to say that they are not working. His question was simple. He asked if I had been in the house more than out to which I replied, "YES!" Granted, I have had other stresses that may have amplified me feeling weak and nauseated. This being said, we agreed that I would stay on these therapies one more time and see how I fair.

Dr.Sweet gave me a disabled parking pass. I turned it in at AAA yesterday and preceded to go to Target and park right up front. It was liberating, oddly. Dr. Sweet also extended my disability leave through February.

So, all in all, I am doing OK. I received a flowers from one of my "Helping Angels" on Monday; a pretty plant from Steve and his colleague on Tuesday; received a card from a family friend and had a great conversation with a neighbor, on Wednesday; yesterday, dinner and groceries were delivered with a sweet note; and, I received a gorgeous basket full of goodies from San Diego United Girls Soccer and Girl Scout Troops 6413 and 6214. I am so blessed. I feel so loved. Thank you to all who spend your time and energies to help me so. It means more to me than can ever be expressed in writing.

Dizziness

2011-10-31T06:11:00.000-07:00

My dizziness radiates,
From behind my eyes.
A light spinning,
That I recognize.

For it comes with being epileptic,
A side effect of those meds.
My entire life suffered,
Seizures feared instead.

Instead of the cancer,
Which now riddles me so,
The dizziness, almost a comfort,
My sight suffers, although.

I hold onto railings,
Cancel all driving, indeed.
To let the dizziness pass.
I have kids to feed.

They do not know how I suffer,
For their day to run smooth.
They do not look in my eyes,
Pupils dazed and un-soothed.

Rest is the answer,
Sleep should do the trick.
Meds can be monitored,
To let my body heal quick.

Today is my journey,
Nothing is more true.
Making the best of each moment,
Dizziness aside, each day anew.

Feeling Normal

2011-10-30T06:24:00.000-07:00

I am up before the birds again. You know you are up too early when you have been up for a good half of an hour before you hear your newspaper arrive on your doorstep. That is me....almost every morning. I think it is mainly because my body needs roughly seven hours of sleep each night. My days exhaust me. So, I fall into bed before 9:00 most nights. Thus, I am up before 5:00 a.m. It is very frustrating to have such an odd sleep pattern.

All that aside, I wanted to write today to share that fact that yesterday was my first day that I felt "normal". At least, by my standards. What does normal mean to me? Mainly, it means to not have my body scream out for a nap if I am have not laid down by 1:00. Yesterday, with Steve and the kids, I was running around from 9:30-7:30.Our schedule was daunting and Friday night, I was really worried. Not to bore you with details, but in this case, they are pertinent. We dropped Madison at gymnastics class at 10:00; ran Harrison over to soccer (he had to be there at 10:30 to warm up for his 11:30 game); hung out with fellow United soccer parents before the game and then watched the game (Steve had gone back to get Madison at gymnastics in the interim); grabbed a quick lunch; drove to Poway for Madison's gymnastics league meet; grabbed a quick dinner; and ended our day at the movies. Steve constantly checked in with me, like I knew he would. After we finally arrived home at 7:30, I almost immediately went to bed.

That schedule may seem daunting to some. However, for the parents of active kids, I am sure the schedule seems "normal". The best part of it was that I felt, "normal". Yes, I was tired. Yes, standing for any given period of time was difficult. Yes, the walk from the car to the movie theater had me a bit winded. BUT, amazingly, I felt invigorated after the movie. Until I sat down, at least. I felt like I had accomplished a great feat. Or had been given a gift of normalcy. I felt fantastic.

Truth be told. beyond the fact that I have terminal cancer, my life often seems like a downward spiral in missed opportunities and disappointment. Yesterday, I read a blog post that I really related to regarding the reality of my life, or lack there of. (If you would like to read it, you may link to it here.) While the post seems negative to the reader, it fired me up in a way that is hard to explain.

It is difficult to know whether this fire perpetuated my stamina yesterday. To be honest, I do not care. I may crash hard today. I may not. Either way, I will treasure yesterday's "normalcy" as if it were my last. Until I have another...and I trust that there will be one. I hope there will be many more.

Feeling Better

2011-10-27T17:04:00.000-07:00

I am feeling better. For the last couple of days, I have had a little extra energy. Mornings are my best time. By lunch time, I still am pretty tuckered out. I try to nap between 12:30-2, when my daughter arrives home from school. However, I find that I am fairly groggy when I awake. It is a little frustrating. I hope that at the days get further away from my past chemo infusion, my energy level will continue to increase.

That being said, I am taking another chemo treatment via pill form twice a day. I am on about day 9/14. I was having issues with nausea over the last several days. Thankfully, Dr. Sweet changed my nausea prevention med and it seems to be working. Life without nausea is sublime!

The insertion of my port will be on Wednesday, November 3. I am not all that excited to be back "under the knife". However, I know that in the end, this is the best choice for me long term. It will help to save my veins against their potential collapse as long term chemo infusions can cause.

So, I sit here on my couch, still groggy, though it is 5:00 in the afternoon. I never quite recovered from my nap. It is disappointing, but I know I will survive. And with patience, I hope to do more than that. I hope to live a little more. Day by day.

Counting Hours

2011-10-26T12:35:00.000-07:00

I used to count minutes til lunch,
Or sometimes until happy hour.
I used to count days until vacation,
Or time, kids aflowered.

Now, I look at the clock,
Tortured, it stares back at me,
Counting the hours and minutes,
Until the next medicine is free.

Sometimes they go fast,
Sometimes oh, so slow.
Never a rhyme nor a reason,
To predict, undecidedly so.

Sometimes it is relief from nausea,
Sometimes it is relief from pain,
Sometimes it is counting the hours,
Until my chemo drug is taken again.

When not counting the hours,
I am counting the days,
Until my next infusion,
The next battle remains.

For it is all for the good,
All fighting for one,
I pray for an end to the cycle,
I pray for a cure, coming undone.

For I can count hours,
And I can count days,
But life slips through my fingers,
Me on the sideline, sideways.

Hope is my confidante,
Grace holds my peace,
Working towards a balance,
Working to end my disease.

Chemo Re-Started

2011-10-19T19:47:00.000-07:00

Yesterday, I re-started chemotherapy, a new cocktail of Xeloda and Ixempra. I received the Ixempra via IV. The chemo nurse found a vein and started my IV on the first try. She gets brownie points for that. I did have a slight reaction to the chemo, making chemo take a little more than six hours. My dad was there with me. He left to take a walk, to grab us lunch and to run an errand. I slept most of the day. I am unsure as to why...but I was very lethargic when I woke up in the morning, too. Either way, I do not have Ixempra again for three more weeks.

After chemo, I came home, took another nap, ate dinner and took my Xeloda for the first time. I went to bed early. I will take Xeloda twice a day for 14 days. Nothing too notable to tell as of yet. I am am taking a vitamin called Neuro-V that was given to me by a friend of my sister-in-law. A side-affect of Xeloda is neuropathy, numbing of the hands a feet. Neuro-V has been proven to help with prevent/lessen the side effects of neuropathy. I am hopeful.

One of the main side effects that I have been fighting is shortness of breath. I feel like I have been constantly climbing stairs and am too out of shape to be doing so. I am conscience of every breath. Walking up the stairs in my houses causes a slight pant. Making my lunch made me want to sit down. I did a bit of research and learned that exercise is good to help oxygenate my lower lungs. I thought about it, uncomfortable and worrying about my limitations in general. Is this the way I am supposed to live? Finally, I thought, "Screw this! I can be uncomfortable on my couch or I can be uncomfortable doing things I enjoy."

After dinner, I got suited up and took Cooper up for a walk. I felt a little better afterwards. So, I think I will keep going for walks. I might even go out to lunch with my colleagues tomorrow. And maybe Friday, dancing? OK, maybe not. Someday, though.

My First Public Speech about Me

2011-10-17T21:08:00.000-07:00

Last night, I spoke at a dinner to about 150 participants of the Pink, Pink, Pink Golf Tournament at Riverwalk Golf Club. This was my first public speech about my breast cancer; my first time speaking in a public venue of this sort, in general. I had no doubt in my mind that I could do it, figuring that if I can present a grant award for celebration to 100 Hospital managers (at work), I could accomplish anything.

I also am quite comfortable sharing my story. Last night, what was interesting to me was the fact that when I was asked about why I share so much, I was not able to answer. I have always felt that more good has come to me from openly sharing my breast cancer journey. I learn more, more people offer to help, I meet more people, and the list goes on. However, when stating these reasons aloud, I suddenly felt very selfish. Has my blog gone too far in telling people what they want to hear in order, in order to draw more to myself?

Not something I have shared in my blog, truth be told, I have had a really rough couple of weeks. In my blog, I try to remain positive, believing strongly that documenting anything negative is a waste of energy and too hard for people to read. A couple of the topics that I did not write about are as follows.

I was in the hospital last week with an infection stemming from my picc line. It was really scary and I had to miss my regularly scheduled chemo. I am fine now. My arm is healing. I am a little upset with the nurses who were supposed to be caring for my picc line and am wondering how I knew something was wrong when they did not. The picc line is out now; I have a scheduled port placement on October 27.
The Taxol did not work. I know, I did write about this. However, it was not until the end of the week last week that I started to admit how scared I really am. Crying on my mom's shoulder, and then again to my brother felt good. Again, I do not like to talk about these feelings....so I you may never here me utter a word after this blog post. I stand firm in my belief that it is a waste of good energy to talk to the world about being scared, but in the safety of my own home, I am learning it is OK.
My emotions have been hiding in my food choices. Yes, I still have my green smoothie every morning. However, lately, I have been more apt to make bad food choices, which I have paid for both physically and mentally, beating myself for feeding the cancer acidic food.

Sharing my story last night, along with my emotions this weekend, I think things might be turning around for me, however. It was such a pleasure and a joy to meet the fantastic people who played in the Pink, Pink, Pink Golf Tournament, benefiting the Komen Race for the Cure, San Diego. Thanks to the good work of Monica Davis (General Manager), the Riverwalk staff, and generous sponsors, they raised more than $3,000. I am especially honored to say that they are going to credit it to team, Racing for Marsi. Believe me when I say that this is very unexpected.

Moreover, the standing ovation of the crowd last night brought tears to my eyes. Having my family, parents and brother (Kelly, you were missed!) beside me made the night truly special.

My mental state might not be entirely back on track, but I am confident that it will get there, one day at a time.

Cooper

2011-10-15T14:31:00.000-07:00

I often hear him breathing at the top of the stairs that lead down to our bedroom. He generally spralls out on the floor, paws extended as if to block the hallway completely. I think Cooper aims to guard me while I sleep. Sometimes at my bedside, sometimes at the foot of our bed; and sometimes even on our bed, if I let him.

He is patient while I sleep. Never minding if I need to step over him in the middle of the night on my way to the bathroom or to get a glass of water.

This morning, when I layed down for a nap, Cooper made a place for himself right on Steve's pillow. I rested quietly for a while trying to meditate myself to sleep. I was breathing into the pain in my side willing it to decipate. It was not working. As my breaths got deeper and more deliberate, Cooper sat up at attention. He licked by face and rested his head on my arm, sensing my unease. I have been learning about channeling energy and prayer to help in healing...and so, I borrowed Cooper's good energy to help me relax. It worked. I arose from my nap about 20 minutes later, completely refreshed.

I call him my prince, a private name that I only share with him. When I look in his eyes, love pouring out, it suits him.

R.I.P Steve Jobs

2011-10-06T08:46:00.000-07:00

Yesterday, I was greatly affected by the passing of Steve Jobs at age 56. While his cancer is completely different than mine, I had been following his story closely as he fought for his life publicly and privately. He was an amazing man. Brilliant man, whose ideas impacted probably more technology than we even realize, as I have no doubt that many, many of today's technological geniuses were inspired by his work.

All that being said, selfishly, the thought that keeps ringing through my brain, like a school bell calling students to class, loud and clear is: "God, I hope I live to be 56." Not to trivialize his fight. Not to make it about me, at all, but at age 40 with one chemo treatment unsuccessfully tested and my tumors still growing (even ever so slightly), I am scared.

For the past 12 hours, I have been struggling with whether to write this entry in my blog. I have been struggling with who might read this and be upset. Most importantly, I have been struggling with how to turn the negative connotation of living to age 56 into a positive affirmation. Truthfully, what I want to tell myself and by doing so putting into the universe, "I am completely healthy. My body will rid itself of cancer and I will live a long and fruitful life."

I thought that maybe if I wrote this in my blog, I would be one step closer to resolving my conflicted emotions. Maybe.

I have been reading so many wonderful quotes that Steve Jobs exclaimed during his career at Apple. I think my favorite was posted on my cousin Melissa's FaceBook page. It reads:

"Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma —which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

In my heart of hearts, I know that my time is not limited any more so than the person who sits on my left or my right. Moreover, worrying about what kind of time that I have left is a waste of energy and will impair my struggle.

Now, if I could just get my brain wrapped around that......

Digging Deep: Disappointing Scan Results

2011-10-04T07:42:00.000-07:00

The results of my CT scan of my chest and abdomen showed a slight increase in the size of my tumors on my liver. Disappointing, YES! The good news is that there is no cancer on my other organs. The other good news...this is only the first form of chemo that we have tried. Like I told my kids yesterday, if every form of chemo worked on every person, there would be a cure for cancer by now. Besides, the way I see it, because I have a particularly aggressive form of cancer, the chemo may have worked very well and dramatically slowed down its progression, an indicator that can never be measured.

All that being said, I start a new chemotherapy regimen on Monday. After much discussion, we opted for two drugs that Dr. Sweet said he has seen work well together, Ixempra and Xeloda. One will be infused every three weeks; the other being pill form and I take it every day for two weeks. I have great faith that regimen will be the ticket!!!

Dr. Sweet also treated me to a handicapped parking status, as chemo is causing shortness of breath like I have never experienced. It is so frustrating to be out of breath before I even enter my destination! Walking any distance is difficult...though I will continue to try. Somehow, I think it is good for me.

We also talked in great length about switching from Kaiser to the UCSD Health System. The move would be very costly, but my gut instinct is leaning towards the change. Another mitigating factor is that our Kaiser doctors/clinicians feel like family to us, and I am not just referring to Oncology. I love my kids' pediatrician; my neurologist is fantastic; my plastic surgery team is the cream of the crop; my general surgeon is very talented and more like a friend; and, Steve and my primary care physician is thorough, caring and was Steve's dad's physician, as well (many of you know of his dad's heart problems....so family history is really important). Distance would also be a factor. Kaiser is right around the corner from my house; Moores Cancer Center is a 30-minute drive. Considering I am at an appointment at least twice a week, combined with the fact that I am getting more and more tired and driving less and less myself, distance is definitely something to consider.

Having spent my career in the health care industry, I have learned that nothing can replace state-of-the-art care. While chemo is the only answer for me right now, over time, who knows? And, though Dr. Sweet is very versed on up and coming research, I believe Moores Cancer Center doctors are bound to have access to the latest and greatest treatments prior to Kaiser.

All this considered, it would be very difficult to leave Kaiser, still. Steve and I will weigh all of the pro's and the con's and make this decision very soon. Although, it may seem like I am leaning towards the UCSD system in this post, I digress as there are many other factors to consider that I cannot amply describe here.

Now, what I have decided is that I must turn my focus to doing every thing in my power to promote the health of my liver. My diet is bound to get stricter.....and I will do what ever else I can, too. Blood tests show that my liver function is stable, not perfect but not declining. Keeping it that way is critical to my ability to continue metabolize chemotherapy drugs.

So, yesterday, I was pretty upset. Today, I still am. I am talked out, which I why I wanted to post this morning. However, in order to do so, I really had to dig deep to put the disappointment of yesterday into perspective. What I kept coming back to is that if I worry too much about tomorrow, I miss the special moments of today. I have today. Today is a gift. And my tomorrows....they will keep coming...as much as any of us can know of our tomorrows.

The bottom line is that nothing has changed. I am still here. And I am grateful. And I am blessed.

Waiting for Test Results

2011-10-03T07:56:00.000-07:00

My body knows a secret,
Privy, not is my mind.
Status of cells shrinking,
Or growing, unkind.

Status of cancer,
And side affects wherein,
Chemo taking its tole,
Tokens collected, within.

Minds are racing,
Even a kiss from my son,
Secret spoiled in minutes,
Wondering, "Have we won?"

"Have we beat this monster?"
"Will we beat it, true?"
Family emotions tied together,
A knot, tight, bound through.

Doctor knows the secret,
His office awaits.
Morning will crawl.
Until we know fate.

Medicine only offers,
A single aspect of care,
Depending on my body,
For help, to take us where,

We can find some answers,
We can learn from within,
Finding treasures in spirit,
Finding strength among the din.

Faith, we have plenty.
Love, boutiful and pure,
Holding onto both,
Promise health and a cure.

A Chemo Tired

2011-10-02T08:54:00.000-07:00

I woke up writing in my head again this morning. I think when this happens, my subconscious is trying to help me work through frustration...and sometimes the best way for me to do that is to write.

My most current frustration: exhaustion, a chemo tired.

"Marsi is too tired," I heard my husband say over the phone to a friend.

"Mommy is too tired," I heard myself admit to my children.

It is not an excuse....and not that any of you think it is. I wish it was. I wish I was trying to procrastinate a mundane task. Truth be told, when I say I am too tired, it is because every muscle in my body is crying to sit down, rest or sleep, a chemo tired.

Yesterday, I skipped out on several responsibilities that had I completed, would have made my husband's life a lot easier. In my head, the day was planned as follows: in the morning, I would go to the Shamu & You Family Walk (benefiting Rady Children's), taking Madison with me so she could walk through Sea World; following this, I would take her to gymnastics; and, then, circle back to Harrison's soccer game. I would be home by noon and could rest to my heart's content.

Unfortunately, the day did not fair as I planned.

Let me first start by saying that the Walk was really important to me. I have worked at Rady Children's for 15 years. A professional fundraiser since 1999, I helped to develop the Walk's very first online registration process. Now in its 5th year, the Walk gets amazing support from the community and I am so proud of my colleagues who have worked so hard to keep it going. The walk brings together more than just the Foundation staff.....but receives Hospital-wide support, with many walk "teams" from across Rady Children's continuum of care, a real "coming together" of my Rady Children's family.

I registered myself to walk on the Team "One Crazy Grandma" before I knew I was sick. While I did not think I could/should walk the entire course, I knew my attendance would mean a lot to my colleagues. Plus, I remembered from the way the walk is structured that Madison and I could just walk through Sea World, where Madison would get to see several Sea World animals and Shamu. While I knew I could make that short jaunt, what I did not count on was the heat. It was supposed to be 70-degrees by noon. Not so much. It was hot! Still, I did mostly OK on the walk. At one point, I sat down for a bit and my good friend Chris walked Madison through the last exhibit set up just for the walkers. When I rejoined them Madison says, "Your friend is really nice." Yes, I know.

It was a slow mile and we had a great time. However, by the time I got back to the car to take Maddie to gymnastics, I was cooked like toast. I thought, "OK, I will take her to gymnastics...I am OK to drive. And then I will drive to Harrison's soccer game and Steve can go pick Maddie up from gymnastics. I will take Harrison home after his game." (Thus, eliminating two legs of my original plan.) However, by the time I pulled into the parking lot for Madison's gymnastics, I knew I was not fit for anything else but going home and back to bed.

I tried so hard to justify going to H's soccer game. I knew all I would have to do is "sit" once I got there. I knew I would not have to carry a chair back to the car nor would I have to do anything else besides walk. Still, I also knew I was barely fit to drive as it was and could not imagine transporting my child home in my current condition.

As I called Steve to tell him I was not going to make it, I knew I was making the right decision. My super hero of a husband did not hesitate in picking up the slack. However, after returning from his game, as my beautiful son amply described the game's highlights so I could envision his team's win, my heart sank a little.

It seems like the distance between what I want to do and what I should do is growing from a crevice to a canyon. Truth be told, folding a load of laundry can wear me out. I wince when I know I have to park far away from a destination. Just making my green smoothie in the morning often makes me tired enough that I have to sit down. And this list could go on and on. So, even though my body does not hurt, the physical heaviness and consistent exhaustion is almost guranteed.

As many of you know, I am also epileptic. Last time I went through chemo, fatigue caused me to pass out and have a seizure, after which, I could not drive for six months. Knowing fatigue puts me at risk for having another seizure, I struggle with deciding what to put on my myLifeLine "Helping Calendar" that does not seem to be too much of a stretch. Yesterday, the thought crossed my mind that I needed to show someone else how to make my green smoothies. I shuttered at the fact that I would not even have the energy to do this...but also know I have to face these facts now.

As I type this, I feel like I am letting you all in on a big secret. A secret fatigue that has me tied to my couch, too tired to play Words with Friends, much less to read a book. Right now, I am too tired to get up and refill my coffee cup, my head spinning ever so slightly. Is this what chemo tired is? Or is this something else? I am thankful that I see my doctor tomorrow where I can report my fatigue....and maybe he will have some answers?

Still, writing remains my blessing.....along with you....my readers. Below, I have included some pictures of my and Madison yesterday. These moments of joy are what I am truly hanging onto...and Madison's face says it all.

Make Lemonade

2011-09-28T06:28:00.000-07:00

Late yesterday afternoon, there was a knock at our door. When I answered it, it was my neighbor, Preston carrying a huge bag of lemons freshly picked from their lemon tree. A beautiful boy that I have known for most of his life, he insisted that he bring the heavy bag of lemons into my house and put them where ever I needed them to go. His dad, Pete had picked them for us. They live two doors up and I did not even know that they had a lemon tree.

Being sick has its advantages. Every day, a kindness is bestowed upon our family. Every day, I learn something new about some one that I care about. Every day, I have the honor of spending time and/or visiting with someone special. Some may call just to "check-in", post a message for me on Face Book or converse with me on Twitter. Yesterday, my Aunt Kay stopped in with some groceries and we chatted for an hour. All in all, I am getting to know people like I never had the time to before.

The lemon delivery was a direct result of the "Circle of Love" that my wonderful friend Cathy Norcutt initiated and set up for me. Something she has done in the past, a couple of weeks ago, Cathy asked me for email addresses of friends and family who have offered to help us with incremental needs dependent upon what might be going on in our lives and/or how I am feeling. I was immediately drawn to the idea because while I appreciate all of the offers to help, if I need groceries (for instance) and I am too tired to shop myself, I am unlikely to pick up the phone and call anyone when the need arises. It is awkward for me...and frankly, it is exhausting. With a "Circle of Love" in place, I have one point of contact, Cathy. Cathy sends out a blanket email...and whoever has time to respond, responds. It is a beautiful thing and a big stress reliever for me. I am very grateful.

So, yesterday afternoon, when I saw Cathy while picking Madison up at school, I inquired about our friend Tara's lemon tree. (Cathy had brought me big, beautiful lemons from this tree before and I use lemons every day to dress my salads and in my smoothies.) Cathy thought that there may not be too many lemons left from Tara's tree....but sent an inquiry our through my Circle of Love. Preston showed up on our doorstep about an hour later. I was so taken aback that I did not know what to say. However, Preston's smile as he proudly handed over the bag was absolutely beautiful. The gesture warmed my heart.

Yesterday's series of events shed a positive light on my predicament. Yes, I am sick. Yes, we are scared. Pardon the pun but life has given us lemons....but with the care, kindness and compassion bestowed on us every day, we making lemonade.

Truth be told, Madison and I made old fashioned lemonade last night....even down to creating a simple syrup and squeezing the lemons ourselves using Dad White's old Tupperware juicer. AND the outcome is one of the best things I have tasted, EVER!

On another note, if you would like to visit the Helping Calendar that Cathy and I have set up and/or be a part of my "Circle of Love", please visit MyLifeLine.org.

Days and Hours until CT Scan

2011-09-26T21:41:00.000-07:00

The days go by like hours; the hours go by like days. My heart sinks with the report of each blood test, the numbers not being horrible...but not showing remarkable improvement, if any. There are just two days and a couple of hours until my first CT scan since I started chemo.

Yet, my spirit sores once I strategically trick my brain into overtaking my fear. As I sit here typing this entry, I am in a good place.

I read a great Chinese Proverb on Twitter tonight (thanks to @AncientProverbs): "Pray to God, but keep rowing towards the shore." I love it....it is how I live my life. I have hope; I have faith, but I firmly believe that even prayer will not ensure me a long, fruitful life, if I do not put in the effort myself. Every minute of every hour of everyday is a conscience decision as to what is best for me in that exact moment. As a mother and a wife, many of my decisions involve what is best for my husband and children as well. Deep down, the choices I make feel deliberate and part of a plan. I am living. And I love it.

So, Thursday morning, I will have a CT scan of my abdomen and chest. The blood work that I mentioned above is fairly stable. I am slightly (and only slightly) anemic. (More spinach, please!) BUT, my white count is stable, red count is stable and my neutrophils levels are good. My liver function panel is slightly improved. Since the cancer resides in my liver, this is somewhat encouraging. My tumor marker test is up, however. This and my little bit of increased pain is what got to me today. Do not get me wrong, my pain is NOTHING like what it was before I started chemo. It has increased, none the less, initially making my mind play tricks, doing the cartwheels and back bends that I watch my daughter do at gymnastics week after week.

Then, I realized that at this point, it is what it is. The blood tests are each only small indicators of what the CT scan might say. Might being the key word. I also know that even if I ate an all raw food diet tomorrow, it will not change the outcome of my CT scan on Thursday. All this being said, I know we will just deal with what ever news we receive. We will get the results on 10/3, when we see Dr. Sweet. And, in the meantime, maybe I will just have some pizza and ice cream....to go with my spinach.

Quick Post for an Inspired Day

2011-09-25T19:01:00.000-07:00

I did not intend to write in my blog this morning. In fact, I had decided against it, while sitting here sipping my coffee. But then I thought about the fabulous day that I had yesterday. Inspired by the beautiful women that we met while attending the Blue Man Group at the Civic Theater last night, I decided to jot something down. Sharing my joy, brings me solace.

Saturday started out a bit crazier than others. Many events were on my plate to coordinate and attend: Madison's gymnastics, Harrison's soccer game, Madison's 8th birthday party and tickets to see the Blue Man Group. This not to say that I did not have help. Steve and my parents were fabulous...with my mom taking a lot of the lead on Madison's birthday party; my dad helping with several aspects of the party...and of course Steve, who masterfully picked up the slack throughout the day.

The day brought many blessings. Many happy moments that I would not trade for hours of sleep: a win on the soccer field; frosting birthday cupcakes with my girl; the smiles on eight-year-old-faces as we provided a successful party craft that had all of the girls giggling; a nap in the afternoon; and, a fabulous interactive performance with the Blue Man Group last night. In addition to all of these special moments, while at Civic Theater, we met some very special ladies that had heard our story from Steve's brother.They were gracious, concerned and out and out two of the nicest people we have met in a while, even sharing their jelly beans and giving the kids one of their Blue Man Group programs to take home. It is special people like these that really help raise my spirits. As much as stolen moments with my kids mean the world to me, the kindness of strangers eases my worries in manner that is often untouched by my caregivers.

Regardless of how great of a day I had yesterday, as I might have predicted, I woke up with a slight cold this morning. This is not to say that I will not participate in activities today as planned....though, I may be watching the Chargers game from the couch.

He Sleeps

2011-09-18T07:37:00.000-07:00

He has no worries,
While he sleeps.
Life is normal,
While he sleeps.

I'm awake with the birds,
While he sleeps.
I toss, turn and arise,
While he sleeps.

My turn to worry,
While he sleeps.
My chance to weep,
While he sleeps.

Coffee made, dishes done,
While he sleeps.
My dog at my side,
While he sleeps.

Kids awaken, sharing the day,
While he sleeps.
The days wears on,
And, I will sleep.

He wishes for healing,
While I sleep.
Understanding my struggle,
While I sleep.

He frets, sometimes weeps,
While I sleep.
Future unsure yet certain,
While I sleep.

Grading papers, hard at work,
While I sleep.
Lights turned off, house locked up,
While I sleep.

Exhausted and worn,
While I sleep,
He falls into bed,
While I sleep.

He holds my hand.

Broken Down, Cancer Treatment is Not so Scary

2011-09-13T06:27:00.000-07:00

My dad went with me to chemo yesterday. I really enjoyed our time together and admire his bravery for joining me. From a parent's perspective, it must be really hard to accompany your child to something like chemotherapy. Especially when it is a recurrence of cancer for a child that had reportedly "slayed the beast" once before. I also think seeing my child with a picc line and a shaven head would be particularly difficult. A parent's own mortality staring them straight in the face by grace of, in this case, their eldest child.

Difficult as it may have been, I was really glad that dad came with me for my treatment yesterday. Mainly because broken down, chemotherapy treatments are not so scary. First and foremost, you will never experience a more caring atmosphere than in a chemotherapy suite. The nurses are angels, who seem to love what they do and share knowledge and thoughtfulness freely, never passing judgement and always with a smile. Secondly, there is a bond shared by those receiving treatment in the chemotherapy suite. Sometimes discussed openly, sometimes shared only through fleeting eye contact across the room. We are all there for the same thing. We all have hope. We meet other parents there with their children. Some younger than me even. Some much, much older. All ethnicities. All types. The environment is very kind. Lastly, the treatment does not hurt. Mainly due to my picc line, nurses efficiently yet cautiously administer doctor's orders week after week, while I sit comfortably in a recliner covered in warm blankets and drinking my green smoothie (and often eating my lunch too). Of course, depending what is going on, some weeks are more difficult than others for me, emotionally. However, my positive spirit to prevails, and I try to enjoy my time to just sit.

I was happy that my dad got to experience this. I was also glad that he and I had some alone time to just sit and talk. Not that we talked about anything earth shattering. But how often do any of us really get that chance? Personally, I have a really difficult time concentrating on anything while chemo is being administered. Reading is pretty much out of the question. I might get an occasional Face Book or Twitter post up. I might glance through a magazine. But other than that, I am all ears. My brother called yesterday. My sister in law, Kelly texted too.It is so very meaningful to me that they both checked in....despite all of what they have going on up in Portland. Anyway, there is something so calming to me to just listen. To have a conversation and really pay attention to each and every word. I do not care if we are only talking about the weather. Or even about the adventures of someone I barely know. I just like to listen and be listened too. I suppose it takes my mind off the poisons that are being infused into my body.

So, returning home yesterday, for the first time ever after chemo, I napped. With each treatment, I am getting more and more tired. Frustrating as it is, now that the kids are back in school it is easier for me to adjust my schedule to accommodate an afternoon snooze.

Following my nap, I attended a wonderful restorative yoga class at A Gentle Way Yoga, led by Lanita. For those not familiar with yoga, in the most simple terms, restorative yoga is slow and gentle, focusing less on changing position and more on breathing. During part of the class, Lanita suggested that "yoga can heal what can be healed," and as in all breathing exercises of late, I developed an acute awareness of my sick liver. It was then that I had a unique vision which took me several minutes to decipher. Coming to mind first was a beautifully marbled tumbled rock, the type you would find on a river or beach, made smooth through ages of tousling in the water. Through continued concentration, I realized that the black rock represented my tumors. I have been told that cancer cells are just regular cells that are missing the DNA giving them a productive function in the body. That being said, I forgave these helpless cells for not knowing what to do and gave them permission to leave and go back to the sea from which they came. I envisioned them being replaced by the soft, fine, delicate sand representing my "normal" liver cells. I realize that this vision seems very lofty, but in my experience with alternative therapies, these visions are very helpful and even promising at times. I never discount them.

Other than that, as I mentioned earlier, the kids went back to school last week. I am exhausted. Even exhausted enough to give my ticket to the San Diego Chargers' Home Opener to my son! However, my white counts, neutrophils and red counts are normal, or normal enough. So, that just means that I am tired from chemo and life in general. I can work with that, I guess. Diet helps.

I am still working on a raw diet. My goal is 75% raw. I am also focusing on the more alkaline foods. My diet demands that I eat little to no meat, preferring a good quality red meat or even better, fish to chicken (all cooked, of course). I have always like vegetarian dishes-so this suits me fine. I have discovered I really enjoy just about any salad with a little olive oil, pepper and sea salt and lemon sprinkled/drizzled over the top. I also am loving my kale, banana, lemon, celery and apple juice green smoothie. (Lemon goes into everything these days, as it acts like an alkaline in the body when digested.)

As far as my medical care, it could be a whole other post. However, Steve and I did see Dr. Sweet on Friday. We have scheduled my CT scan for September 29. From this, we will be able to tell if the chemo is working and how well it is working. I will have a follow up consult with Dr. Sweet on October 3 and will resume chemo again on October 10. More to come.

In closing, I am realizing that I need to post more often, in order to avoid these lengthy entries. Thank you for your patience as I ramble on and your dedication to reading my blog. It really does mean the world to me.

Thoughts of Swimming

2011-09-04T06:20:00.000-07:00

Yesterday, Cooper in tow, I visited my parents' house to water my mom's blossoming tomato plants. While watering the plants, I noticed at least a half-dozen oranges on their orange tree. Oranges from that tree are absolutely delicious! Knowing well that they are not an alkaline food, I craved their sweetness and wandered down into my parents' yard to pick some. Maybe I can have one every other day?

In doing so, my flip-flopped feet got pretty dirty. The tried and true way to clean them.....the pool. The pool water was warm. Warm enough that my even my dad would have gone swimming. (Dad does not go in until the water reaches 84-degrees.) The pool was like an old friend. Upon my foot's first dip, I wanted to dive in and swim all of the laps that I always told my parents I did when they inquired as to what I did that day and I did not want them to think I was lazy. With a picc line attached to my arm, I cannot do that. As Cooper looked on (he is still afraid of the pool water), something deep inside me began to hurt.

I was glad I was not alone. Cooper is a great companion. He knows when I am upset with or without outward signs. This time, I did not shed a tear, but instead jumped out of the pool as quickly as I dipped my feet in. Memories came rushing back, like racing my brother across the pool when we were kids taunting each other to see who was faster; laying poolside with my girlfriends working on our "tans"; rough housing in the pool with my dad; the time I got stung by a bee while floating in a pool lounge chair; and, more recently, the memory of taking Harrison swimming when he was barely one-year old. A memory that truly warms my heart, I remember that it was a perfect summer night....and I am not even sure if my parent's were home. In the pictures I have in the scrapbook, Harrison has a smile from ear to ear. Recollecting all of these memories, I also thought of the times where I did not go swimming because I was nervous, even in front of my parents, about how I looked in a bathing suit. Especially now that I cannot go in, those worries seem shameful now.

Solemnly gazing into the welcoming water, I wondered if I will ever be able to swim in that pool again. My brain says, "Well, of course you will be able too." I know picc lines are not forever. At the same time, I know that the reality is that I will be on some sort of chemo for the rest of my life. Maybe it will be in pill form? The thought of getting a port sends shivers up my spine. If I were to get a port, I believe it would be placed under a collar bone. I cannot imagine messing with my chest area any more. Gaining weight like a yo-yo since I was 17-years old, even when I felt the worst about my appearance, I used to take such pride in how pretty I looked in a V-neck top. Not so sure I would be able to wear V-necks with a port.

This morning, I woke up with all these thoughts racing through my head and hurried to my laptop to post this blog entry. I started to think how the entry would make me seem like I am feeling sorry for myself. However, I think this is OK. Sitting here writing it, the tears have come and gone and now I feel better.

I also realized that along with all of my limitations this summer, my cancer recurrence has brought the best gift in the world, more time with my kids. A working mom, I have never been "off" for an extended period during the summer. I have never been able to treat the kids to the "lazy" summer days that I enjoyed growing up. This is exactly what I did this summer. I even got to be the fun, cool mom a couple of times and spoil them. Those memories count for a lot. Those memories are what dry my tears and enable me to keep fighting.

Chemo Calls My Pillow

2011-08-27T08:43:00.000-07:00

Chemo calls my pillow,
Not much I can do.
Choices to make.
Decisions, thoughts of you.

Physical limitations,
Around every turn,
No pool, no meat,
Events skipped, I learn.

What do I skip?
Navigation is key.
Disappointment imminent,
Pains hearts, daily.

Gets to my soul,
Guarded and fair.
But happy reflections and hope,
Conquer sadness, in there.

It is the moments I fight for,
Surface thoughts so true,
Managing frustration,
Grieving, anew.

Positivity, so critical,
I banish sad thoughts.
Faith, hope and trust,
Tying their knots.

My friends lend affection,
And my family is my wall.
Protecting and reminding me,
It is OK to fall.

Into a sleep that is so needed,
A rest that is well deserved.
As I fight off this monster,
Called cancer, absurd.

I Still See Me in the Mirror (even with a shaved head)

2011-08-23T07:36:00.000-07:00

Two days ago, my friend Ally shaved my head. My hair had reached a point where it was falling out unprompted and my hairline and the growing bald spots on my head were not hidden well with scarves or creative hair styling. So, I was done with it.

Now, I am nearly bald. Last night, I was relieved when I looked in the mirror and just saw 'me'. Smiling at my reflection, I saw the same rosy cheeks, smiling eyes and crease across my nose. My skin looks mostly the same color (chemo tends to change skin tone a bit) and my topaz earrings shone brightly, no longer impeded by hair. A big change from nearly two years ago, when my first glance at my shaved head screamed, "cancer patient". And the hats and head wraps made me feel even less attractive.

Instead of covering my head up right away like I did last time, I have been avoiding wearing hats around the house. Eventually, after the kids and me are more used to my new look, I may even venture out in public without covering my head. I am not sure if it is because I am feeling brave or because I am bored with my hat collection. Either way, I know the first time out of the house will be hard...but maybe I will like it.. Who knows? I have one nice looking head, after all. I am lucky in that respect.

Admittedly, brave or no, there will be times where wearing a wig is most appropriate. On Wednesday, I am taking my old wig to my hair dresser for some re-shaping. Steve is pushing me to get a real hair wig...and I am beginning to believe that is the way to go...especially after talking to Ally. I just wince at the price a bit. That, and I hear that the upkeep on them is difficult. As usual, I have a lot to learn and have added to my task list some research on real hair wigs. Just what I need, more on my task list.

Yesterday, I had chemo. All went well. However, due to the fact that they premedicate me with a steroid before my Taxol, I find that the night after chemo I do not sleep well. So, I woke up at 4:00 a.m. this morning for no apparent reason. I managed to procrastinate writing in my blog for a couple of hours by playing Words with Friends, entertaining myself of Twitter and catching up on other blogs that I follow. I really enjoy all three of those activities, by the way. My friends on Twitter have a unique way of lifting my spirit, especially. Sometimes, we do not even correspond...I just love their positive spirits and funny posts. (Facebook friends, I love you too...you are just not awake at 4:00 a.m.!)

Next week, I have chemo again, and then a week off. I am finding that chemo is not my focus, which is great. Instead, I am revelling in the last days of summer with my kids, admiring the way they are growing and maturing. I even have them emptying the dishwasher and helping me pick out foods at the Farmers' Markets. Our time together is precious. So very precious. Steve is jealous, but turn about is fair play, right? He is a teacher and always has had a month off with the kids during summer, while I slave away at the office.

My brother and sister-in-law will be in town this weekend for their friends' wedding. Seeing Darin and Kelly always make me smile. I can hardly wait to show Kelly, who has a marvelous green thumb, how our organic garden is growing! It is so fun to go out and grab my own basil and cilantro to add to my raw food dishes.

As I am beginning to ramble, I will end this now and prepare for the busy day ahead. And when I look in the mirror this morning, I think I will even put on a little make-up...because that is what the pre-metastatic cancer Marsi would have done. Then, I will look even more like 'me'. And when I get really brave....I will share some pictures here...Happy Tuesday, all!

Orchid by my Bedside

2011-08-21T08:55:00.000-07:00

There is an orchid by my bedside,

Purple, tall in stance.

Gracefully smiling at me,

Bringing joy with each glance.

A gift from a neighbor,

That I hardly know.

A gift so timely,

On a day, so slow.

Slow in stolen moments,
Where I still have my hair.
Now thinning so effortlessly,
With each breath and without flair.

With each movement,
Another hair falls,
Silently to my shoulder.
Resting and uncalled.

"Let it be gone!"
Is what my brain wants to say,
My heart weeps alone,
That it has happened this way.

A cancer patient again,
Nothing tells more,
Than a young, bald head,
Hat covered and adorn.

At least chemo is working,
And the hair will grow back.
Justification comes easy,
Helps my spirit, intact.

Flowers by my bedside,
Faithful and true,
Representing beauty,
My life, renewed.

Chemo Number Four, A UCSD Second Opinion and My Little Soldiers

2011-08-16T08:24:00.000-07:00

I was so proud of my kids yesterday. I knew there were a half dozen people who would have watched them...but as I thought I was only going to be out of the house for about three hours for chemo and two for my appointment at UCSD, I knew that they would prefer to stay home. As Harrison is nearly 12 and Maddie nearly 8, Steve and I were OK with that. Besides, I was a latch key kid at that age.

Madison called me once during the day. It was around lunch time and I was in chemo. She says to me, "Mommy, are you bringing home food?"

My response, "No, I was not planning on it." This, I had already told them. I think it was wishful thinking on their part, as I we have been depriving them of fast food lately.

Madison replied in a chipper, non-whiny tone, "OK, Momma. I was just checking," and in the same efficient manner that I tend apply, she ended our conversation. Harrison made them peanut butter and honey sandwiches.

When I got home from chemo later than I expected, all was fine. Their laundry was put away, as I had asked. They had both read their books for an hour, as I had asked. My friend and colleague, Lori Mathios, had dropped off a beautiful salad and fixings for us to have for dinner that night, which was fabulous. The house was a mess, but I was fine with that. My kids were safe and not arguing.

Chemotherapy had gone well, but I was more tired than I expected. During my session, Dr. Sweet came to see me to answer a few questions that I had with regards to my blood counts, which was nice. After I got home, I had time to spend a few minutes with each of my kids and then managed to fall asleep on the couch for a bit. When Steve picked me up to take us two our second opinion at Dr. Sara Boles at UCSD, I was glad that he was able to do so. I was much too tired to drive.

Dr. Boles was a great match for us. Not only was she warm and friendly, she has a specific interest in metastasized, triple negative breast cancer. Jeanie Spies, RN, my long time friend and confident from Rady Children's Peckham Center Cancer and Blood Disorders, came to the appointment with us.We started reviewing my case with Dr. Boles. Steve and Jeanie chimed in where appropriate: Jeanie, having a great outsider's view of how I had handled this disease/past chemo and Steve filling in a few pertinent blanks in my two year ordeal.

Dr. Boles had reviewed my chart thoroughly and talked to the doctor who is PI on the Phase I clinical trial for my disease, Protocol No. P276-00/52/10. We talked in depth about the status of the clinical trial and how I might fit into it. There is a current waiting list (that I am now on). I would have to be a UCSD patient...which I could become during Steve's district's open enrollment period in November (taking affect in January). If we decide to go this route, more than likely, I would be entering this clinical trial in Phase II, the randomized part of the trial, where a computer would authorize the use of the new drug, currently referred to as P276-00. I would have a 50/50 chance of receiving the new drug. Either way, I would receive gemcitabine and Carboplatin chemotherapies concurrently, i.e. if receiving P276-00, I would be receiving a third chemotherapy drug. This makes sense to me. Jeanie states that gemcitabine is one that use at the Peckham Center regularly...and it is well tolerated. Since I have never had either of these drugs before and I know my body responds well to chemo, we think these drugs may be good for me to try.

We talked about other chemo options, as well, such as parb-inhibitors. However, I felt that the most important part of my visit was this: I learned of the glowing results of my pathology report from my mastectomy. It was a good as they come. All of the matter that Dr. Deree removed during my modified radical mastectomy had no signs of cancer. In other words, the matter removed was just scar tissue and lymph nodes. I knew that chemo had shrunk the tumor by 75%. However, what I did not understand...is that while the tumor was still existing, the cancer was not.

Obviously, a cancer cell got away. But the good news in all this is that chemo works for me. This gives me great hope.

With 6-8 known tumors on my liver, Dr. Boles explained that to her, the state of the cancer means that there is probably cancer is another organ. The cells are currently too small to detect through a CT scan. If this is the case, I am guessing it is in my lungs, where last month, a CT scan showed two "non-descript" spots that Dr. Sweet is watching. For this reason, chemo is my best option.

That being said, I feel stronger than ever. If anyone has the tools to fight this, it is me. More important than body chemistry and a strong disposition, love surrounds me. More and more, I am convinced that modern medicine alone is not the answer for me. I am the answer. My family is the answer. You are the answer. Bring on the chemo. I can take it.

On another note, I ate almost all raw food yesterday! I think I had a small piece of foccacia at dinner and a few Wheat Thins during chemo...and that was it for processed food! I am also replacing a meal (or two) a day with green shakes. Yesterday's was honey dew, spinach, organic honey and flax seed. It was not too bad! This morning's is kale, spinach, apples, bananas, flax and maybe some honey. I might throw something tart in there too. Maybe some lemon juice.

This is a very long post. But before I close out, I wanted to share with you what Steve and I came home to last night: a show, carefully rehearsed by our kids. Performed on our trampoline, it was a choreographed gymnastics routine to the song, "Look at Me Now" by Chris Brown. Our little soldiers...always fighting to bring a smile to our faces.

A Walking Science Experiment

2011-08-11T08:49:00.000-07:00

Next time you see me, I may have no hair. The day after my birthday, it started to fall out. I am mostly loosing hair from the front half of my head, which I guess is good because I would hate to be walking around with bald spots that I cannot see. Now that I am loosing my hair again, I start to ponder what it will be like the second time around. Will I go out in public bald? I am not sure if I am that brave. Will I like the hats that I already have, or will I prefer scarves? I am pretty sure that my eyebrows are goners, but will my eyelashes hang on? I do think it is interesting that my hair started to fall out the day after my birthday, like when you are starting to get sick before a big event and your body holds it off until the event is complete. Sure enough, the day after my birthday, my hair filled the comb.

Trying not to focus on my balding head, like a bee to a flower, I am busily extracting pollens of knowledge from many, many fields. First and foremost, I am meeting with my health coach, Tammy, every other week. An interesting lesson this week, we spoke of "primary foods" as not being foods at all, but the energy filling your life through spiritual, family and career activity. The concept brings me back to times where I have been so happily focused on a project that I forget to eat. Or, from the perspective of my children, when all they want to do is play and they "are not hungry." The idea is to fill your life with joy so much so, that food is no longer the focus and the "secondary foods" that feed your body are clean, high energy foods. Not to say that I will never have ice cream again.

I also am slowing adding raw food recipes to my diet and investigating a 10-day detox, called the Green Smoothie Detox. I am finding I have so much to learn in so many respects that it is a bit overwhelming. Tammy keeps reminding me to take one thing at a time and to make it easy. I will get there, I suppose. Many thanks to my friends, Bernadette Miller and Zanetta Heard for the inspiring emails and resources.

I have had Reiki twice from my friend Karen at Home and Soul in El Cajon. (A special thanks to Teri Favro for making this happen and introducing me to Karen!) Both sessions have been very moving to me, helping me to relax in a way not easily explained unless you have had personal experience. I am also receiving Healing Touch weekly, as organized by Cheri Fidler and my colleagues at Rady Children's. Reiki and Healing Touch are very similar. Both are playing a critical role in my ability to focus on healing.

Today, I see Dr. Sweet. I have two more rounds of chemo left (six more sessions). I am enjoying my week break from chemo, immensely. I am tired, and I think the chemo side affect of fatigue is trying to take hold. But I also think that the chemo is working. I have no pain...unless I eat really unhealthy. My liver does not like me very much when I do that. Anyway, I will be interested to see how each healing therapy that I engage will aid me in my recovery from this disease. I know that love heals. I know that food heals. I know that chemo heals. How they work together...well, that is the ultimate science experiment.

Today is my Birthday, Hold my Hand

2011-08-08T13:45:00.000-07:00

Today is my birthday,
Hold my hand.
Fingers locked together,
You understand.

No present needed,
No cake will do,
Just hold my hand tight,
Find strength, anew.

Today is my birthday,
Hold my hand.
Tell me that you'll fight with me,
As our future demands.

In sickness and in health,
For that we did vow,
Never thought it'd be me,
Sickness plagued, now.

Today is my birthday,
Only 40 years old.
Prime knocked down early,
Faith and hope unfold.

Into something so great,
Much bigger than me.
Making a difference through caring,
For all who I see.

Today is my birthday,
Please hold my hand.
Tell me you love me....

Never let go......

An Adventure in Raw Foods

2011-08-05T08:26:00.000-07:00

As I helped to pack my husband's lunch today, it hit me like a ton of bricks. I am so proud of my husband for his efforts in eating healthy and for his willingness to change his eating habits. For those of you who know Steve, you may be slightly astounded by what makes up his diet of late. For breakfast, I make us eggs with spinach, zucchini, tomatoes and bell pepper, using rice milk instead of regular. We split a piece of Ezikiel toast between the two of us and share a couple of early morning moments together (usually) before he races off to work.

As a teacher with little time to eat during the day, he brings dry, plain oatmeal with a handful of blueberries and a touch of brown sugar to eat at his school's "Nutrition Break". Not originally a fan of blueberries, he now enjoys the flavor that the bursting blueberries add to his oatmeal, after it is cooked in his classroom microwave. At his request, for his lunch, I packed him two small oranges, an apple, an organic yogurt and a Trader Joe's frozen entree. My "meat and potatoes" man is experimenting with healthier foods and vegetables now on a regular basis. And for him, this is a big deal. And I am extremely proud of him.

But now comes our biggest adventure. Raw foods. Yesterday, I met with my absolutely fabulous health coach, Tammy Moretti. (Thanks, Mom and Dad!) I told her that I felt that it was up to me to cure my cancer. As much as I trust and love my oncologist, Dr. Sweet, I do not believe that Kaiser is equipped to cure my cancer. I am exploring other medical options, of course and I will take Dr. Sweet's tremendous knowledge into consideration. However, I believe it is up to me to cure my cancer, through a combination of therapies designed for my mind, body and spirit.

That being said, Tammy recommended a "raw" foods diet for me. We talked about how raw foods could help to aid my body in healing, helping it to function on the highest level possible. Before Tammy made this recommendation, I had researched this possibility and my gut instinct told me that this was my best bet. Truth be told, I am not eating a lot of meat right now. Drawing protein from raw almonds and eggs, I feel good and do not really miss it. While the thought of eating mostly raw foods scares me a bit, I think I can do this.

Tammy challenged me to find a new recipe a week for our Vitamix. She said that my Vitamix and I are going to be best friends. She also reminded me that I should not try to go raw over night but that I should start replacing out meals little by little. Finally, and most importantly, she warned me that my diet was going to be about 90% different than that of the kids. Becoming more of a "short-order" cook in having to prepare two different meals will be hard. However, we talked about how my diet would have a positive influence over theirs over time, which makes me very happy.

And then there is Steve. When I discussed it with him, he lovingly asked, "What do you need from me?" I think he might be trying some of what I eat, but I expect it will be a slower and less complete progression for him. That is more than OK.

So last night, needing eggs and milk, I dragged my incredibly tired self to the Trader Joe's. As I wandered around, I picked out a couple of things that I needed to make raw Hummus. My first raw and Vitamix recipe. They did not have everything I needed...but then again, I have a birthday coming up. I think I can wait until after then to venture out into the raw foods way of life. In the interim, I am going to enjoy cooking eggs for me and Steve in the morning...and have birthday cake on Saturday night and celebrate a new decade with my friends and family.

And if you come to visit me next week...I might just offer you some raw hummus and crackers.

Chemo Session Number Three, Complete; Emotional Roller Coaster in Motion

2011-08-01T16:25:00.000-07:00

I had chemo today. It amazes me how much energy I have after chemo. I assume it is the steroids that they give me via IV before prior to the Taxol, a boost to carry me through. Based on this assumption, I am careful to rest. However, the fact that I am upright and an energetic participant in conversation is deceiving to those around me. I have been known to blurt out awkwardly, "You know, I had chemo today. Slow down."

Overall, I feel fine.This is one of the hardest parts of chemo. Nothing is dramatically wrong. I have an ache or pain here and there. Fatigue that randomly injects itself into my daily life. A picc line. But other than that, no outward symptoms. I do not walk down the street feeling like I have a sign over my head that says, "I have cancer. Help me. Feel sorry for me." Though sometimes that it is exactly what I want to do.

I know better than to let the "pity party" dictate my daily life. It is not good for my psyche, and I have too many who depend on me to be positive. And I say that because, I can see how my sadness affects them. When sullen moments become overwhelming, I tend to process my feelings internally, vent them in my support group and let myself get distracted in the basked attention that is being lavished on me and my family right now.

Hand in hand with these feelings, the immense feeling of guilt is another hard reality of my cancer recurrence. Through the years, I know I have not always made the best health choices for myself. Often, I contemplate what part neglecting my health has caused my cancer. Diet coke? Sugar? My epilepsy meds? I know that I will never know. I also know that it could have been any combination of things that have yet to be discovered. It could be even be a gene that they have not discovered yet. (I am BRACA 1 and 2 negative.) To let myself off of the hook, I rely on the messaging I learned in Weight Watchers and I do/have done the best I can for myself everyday. And if the best that I can is eating chocolate cake for breakfast, then that is OK (not that this is a regular practice). I know I have done the best that I can. Mostly, I hate watching my family and friends hurt and the thought that I could have done something to prevent their suffering, bothers me. And the emotional roller coaster moves along.

As far my treatment progress, I am waiting for second opinions. I have good leads and things are in motion. It looks like I will be seeing Dr. Sarah Boles at UCSD in the next two weeks. We are very excited as she is in process of designing a clinical trial for metascized, triple-negative breast cancer....which is exactly what I have.

On another note, next week, I have a break from chemo. This essentially means that I have two chemo-free weeks ahead. (Next treatment is 8/15.) Yay! We are celebrating my 40th birthday next weekend (my birthday is August 8). With no chemo, I intend to celebrate all week long. Because I like attention like that. The pity party is not welcome.

Live a Life Inspired

2011-07-30T08:48:00.000-07:00

I woke up writing my blog this morning. Different phrases and titles were floating through my head invading my psyche and waiting to be translated into something legible and interesting to read. As I type this, I cannot say that I have completely decided how the flow of this post will come to life. There is so much I want to say and my thoughts are pretty much all over the place, but here it goes.

Last weekend, I received a beautiful email from a high school friend. Her heartfelt email described how my story had inspired her to live a better life, be a better mother and make better use of her time. As always, when someone describes how I inspire them (not to make it sound like it happens everyday), I read in both disbelief and deep appreciation. To me, my outlook on my battle with breast cancer seems like the typical outlook/response of any responsible, loving parent. I know I have stated this time and again. However, I am beginning to understand that what seems ordinary to me is extraordinary to others.

Sunday night, the email on my mind, I was lying in bed really not thinking about much, yet thinking about everything. It was there that it hit me: Maybe I was put here on this earth to inspire others. And assuming that is the case, how blessed am I? How many people can say that they have inspired people and have documentation, like the lovely email I received. What a wonderful legacy I have been granted.

As much as I am struggling with my disease and recognizing the long road I have ahead of me, the sense of having a greater purpose brings me great comfort. And I hope it does to Steve, my children and my family. The fact that someone might take extra time with their kids, help a neighbor and/or enjoy their life a little bit more because of knowing my story is a gift that makes me tremendously happy.

I had a fantastic talk with a neighbor yesterday, whose family has had a heck of a journey as of late. In the midst of our conversation, I spoke of my Sunday-night epiphany. Suddenly, she jumped up and ran downstairs (we were at her house), returning with a bracelet that says these words: "Live a Life Inspired". As she put the bracelet on my wrist, she said that the bracelet had been given to her but she thought that I should have it.

"Wow and thank you" was all I could say. Did I mention that I was blessed?

Chemo, A Picc Line and A Mother's Love

2011-07-25T11:03:00.000-07:00

A tear rolled down my cheek as the nurse, Margie, tied the tight tourniquet around my upper left arm in preparation for the picc line procedure on Saturday, July 22. I had been bubbly all morning, getting to know my nurse and engaging she and Steve in light conversation. The tying of the tourniquet stopped my enthusiasm dead in its tracks.

I had had my first chemo session last Monday, when I learned that I would need a picc line moving forward. My fragile veins have weathered too much as of late. The fact that I would be subjecting them to further chemotherapy medications through IV ensured their final degradation. I was not at all surprised when my chemo nurse recommended the picc line.

Chemo nurses are masters at what they do. I have never encountered one that I did not like. In fact, they had no problem at all finding a vein for chemo last week. My nurse was warm, friendly and efficient. He had nothing to do with the tears that graced my cheeks as I faced settling into the chemo chair once again. My mom was with me. We both cried. When the chemo nurse told me that I would probably loose my hair, we both cried some more.

Sitting in that chair, in that room was difficult. Writing this now, I liken it to the common feeling that most have with regards to schooling. The longer you are out of school, the less you want to go back. Though, it seems rather obvious to say that I did not want to have more chemo. Since my last session in March 2010, the adverse emotional block towards chemo has been gradual. Someone once told me not to bring anything you like to chemo because you will never want to use/see it again after. Right after finishing chemo last time, I did not understand this concept. However, over time I noticed that some of the clothes I wore while receiving chemo, I had not worn since. The purse I carried to chemo has not been used since. In fact, I finally discarded a t-shirt that I knew that I would never wear again ..... because I had worn it to chemo on several occasions. The culmination of these feelings was earlier this year, when during a routine check up at Oncology (which shares a waiting room with the chemotherapy suite), I thought to myself, "I do not think I can ever sit in that room again. I do not know if I would have the strength."

These feelings did not bode well for my newly scheduled chemotherapy treatments. I found the strength, as I always do. I got over it. My mom held my hand. I think that she is the only person I would have wanted with me. I needed to feel the feelings I was experiencing, without shame and without worry. I knew we could cry together and that everything would be ok. With my mom there, I did not have to be the strong one, the caretaker.

Beyond the tears, my nausea started straight away. It was all nerves, as my current chemo drug does not cause nausea. But the rest of the treatment went well and I felt fairly decent the entire week that followed.

Fast forward to Saturday, when I got my picc line. Beyond the fact that it out and out sucks that I have to have it, it is a fascinating procedure. There is now a tube that runs through my vein from my upper left arm to the area right above my heart. I saw the x-ray, after the procedure was complete. It hurt a bit. But that is the last time that I will have to deal with a needle for a long time. All blood draws can be taken from the picc line. I have to admit, because of everything I have been through in the past three weeks, I am afraid of needles for the first time in my life. The bruising on my left wrist are some of the ugliest bruises that I have ever endured. All from the IV's necessary for the numerous procedures and tests ordered to diagnose and track my disease.

The only bruise I do not have is one from my chemo last week. The last one that would be given to me via IV, my chemo nurse was the shining star. And today I go back for more. And I will continue to go back and back until the cancer gets the clue that it is not welcome. My gracious mother in tow.

The Biggest Secret I Ever Kept: Cancer Rears its Ugly Head

2011-07-17T21:36:00.000-07:00

The pain in my side started two months ago. Still hurting a bit from my surgery on my right side, the pain started to radiate down to my hip. My plastic surgeon recommended I stopped doing everything: no twisting, lifting, pulling, pushing, etc. Happy to comply, after about two weeks, my muscle on my side stopped hurting enough that I could tell that the pain was not radiating down...but was starting on my side and radiating up.

The doctor's appointments started then. One and then two, in the same week. Both doctor's ordered ultrasounds, each a different type. One doctor was convinced that I had colon cancer, the next a gallstone. I got an appointment fairly quickly and had an ultrasound two weeks ago Friday. My primary care doctor called me while I was on vacation with my family in Tahoe. He had seen something on my liver in the ultra sound and I needed a CT scan. At this point, I was in quite a bit of pain. However, the excitement of vacation was a great distraction and the pain was bearable. We drove home from Tahoe on Friday and took Harrison to a soccer tournament Saturday. By Sunday morning, I was in so much pain that I could not fathom getting through the day. I took myself to the ER, where they did my CT scan, gave me something for pain and referred me to oncology.

I called in sick to work on Monday. Steve and I met with my oncologist, Dr. Sweet who confirmed with the ER doctor had told me, I had cancer in my liver. Dr. Sweet showed us five-six spots on my liver, one was as big as a golf ball, but flat. He ordered a liver biopsy for Wednesday to confirm his assumption and determine which the tumors type. He assumed it was triple negative, like my breast cancer. He assumed it was metastatic cancer. Not good news.

I conferenced with my supervisors at work throughout the week, working only on Tuesday and Thursday. We agreed that I would not disclose my cancer's return until I knew my course of treatment. I was happy not to talk about it at work. To keep this secret. I knew I had to leave my job for a while and wanted to preserve my last days of normalcy.

On Friday, I saw Dr. Sweet again. At that point, all Dr. Sweet knew was that the tumors were cancer, as confirmed by the biopsy. So, we talked about a plan for treatment on the assumption that it is the metastatic breast cancer and triple negative. The reality of the situation is that this cancer is not curable. The goal of treatment will be to slow the pace of the cancer's growth by any means possible. That being said, after discussing several options, I opted to start chemotherapy on Monday. I am starting Taxol, every week, three weeks on, one week off.

Since this has all happened so fast, I thought I would start with this option, while allowing myself time to research clinical trials, other drugs and alternative therapies. I have changed my diet considerably, cutting out refined sugars and animal fats, adding flax, lots of Vitamin C and E and increasing my intake of fruits and vegetables.

How are we doing? We are completely overwhelmed. The kids are each handling this in their own way. Maddie talks about it; Harrison does not. Steve is hanging in there. He starts teaching again tomorrow, as he is on a year-round schedule. That combined with my new battle is a lot for him to handle. However, I know that he will be the rock star that he always has been once we get into our new routine.

I am sure I am leaving out a lot of things in this entry. I am tired but now that my colleagues know what is going on, I wanted to post the gist the recent happenings. I am trying to stay positive. Trying to be normal, enjoying special moments. I will work a couple more days this week at best and then will be home to focus my energies on this fight. And I know I will need all of the energy that I can muster.

Circle of Life, Rest in Peace, Dear Friend

2011-06-02T23:20:00.000-07:00

At 6:30 p.m. on Tuesday, May 31, I was watching underpriviledged youth receive their high school graduation stoles for a program called FACES for the Future, a program that I had helped to initiate three years ago through my job as the Grants Officer for Rady Children's Hospital-San Diego. The audience was brought to tears when one of the graduating Seniors declared that the program had saved her life by helping her avoid a gang lifestyle that is prominent in her neighborhood. I was moved.

At 10:15 p.m. that same night, my husband's cell phone rang. I recognized a familiar tone in his voice indicating that one of his good friends was on the other end of the line. His friend was delivering bad news. Very bad news. Also at 6:30 that night, our friend had been struck by a car while riding his bicycle on a seemingly safe bike path along route 56. He was killed instantly. Struck from behind, the accident happened too fast for him to get out of harm's way. A freak accident. A freak accident that leaves his lovely wife a widow and the single mom of their two kids....who are the same age as mine. Rest in peace, sweet Nick.

I could not help but think of the irony in these to occurrences that night. Underpriviledged youth just starting their lives, lives that have been turned around and changed forever....to a good friend of mine, losing his. I remember Nick and Deb's wedding. I remember how happy they were...I know how happy he made another good friend of mine, Andrew, who was his college roommate and one of my husband's very closest friends. Sincere I think is how I would best describe Nick. Just an all around nice guy....as is his wife.

To be a widow around age 40 is something I cannot even fathom. Deb had wanted Steve and I to hear of Nick's passing from Andrew. I was very touched that she even thought of us in a time like that. I emailed her right away and will call this weekend. I want her to know that I am thinking of her.

I hope that my cancer journey has helped me to know what to do.... I have learned that calling is better than not calling. Support will come and go. Anything I can do to help make her smile is good. Even if I can put a twinkle in her eye for a split second, I am helping. These things I know....because in my most dark hours, these things are what I needed.

Now is my chance to give back.....

As I go to bed tonight, my thoughts are truly with Deb. I hope someone is staying at the house with her. I envision her and her kids all sleeping in one bed. I envision her getting up in the middle of the night to cry in the other room so as to not to wake her sleeping angels. And I know Nick is watching over them all.

And as I go to bed tonight, I will go look in on my sleeping angels, thankful for all my many blessings...and at this time especially, thankful that my cancer journey has taught me what to do in times of tragedy.

I am still here...

2011-05-28T09:24:00.000-07:00

Still here...through it all, I am still here. I am still healthy. I am happy, most of the time. Life is getting back to normal. As normal as I will ever be. BUT who wants to strive for 'normal' anyway? Exceptional is more like it.

The good news is that my bone scan was clean. Not sure what is wrong with my liver. I am guessing that it will regenerate and its minor malfunction is just a result of being beaten within in an inch of its life by the poisons otherwise known as chemo drugs.

My plastic surgeon has signed off...or at least given me the summer off. Unfortunately, my implant on my right side has slipped a bit, causing a gradually growing divot running along the inside of my reconstructed breast. I understand that it is a result of my skin being radiated and is nothing that cannot be fixed. The procedure will save for the Fall, when I have some sick time saved up at work and summer fun is over.

All being said, I am off to the gym, by way of taking my girl to gymnastics....one of my 'normal' routines that I truly enjoy. I have missed you all and hope you are all doing well.

Bone Scan Requested: Nerves on Fire or Wake Up Call?

2011-04-22T14:44:00.000-07:00

I got a wake-up call this week. My oncologist left me a message that he is recommending a bone scan due to my liver panel being off, twice. I knew this fact would warrant another test of some sort. However, to date, the testing was at the recommendation of my primary care physician. So, to have my oncologist call to ask me to have a bone scan left my jaw on the floor and caused an avalanche of unexpected tears.

Mind you, I am TIRED! My first week back at work has been a blessing and a curse. Looming deadlines and stalled grant projects lead to a roller coaster of fire drills that I am making my way through. No worries. The pressure of grant deadlines has helped to keep my mind occupied.

Truth be told, I have been expecting to learn that I have weak bones due to chemo. The fact that these tests are off could be an indicator of any number of things. We are thinking positive.

I told my husband this morning that I think the fact that I have to have a bone scan is a good wake-up call. We both need to live a healthier lifestyle because like it or not, I am living the life of a cancer survivor. These tests will always mean a little bit more. I will probably always feel like I have dodged a bullet.

Today, I actually scheduled the bone scan for Tuesday, April 26. And as positive as I may sound, I have to admit that my nerves are on fire. There are butterflies in my stomach and I cannot sit still. Nothing that lunch with a girlfriend and another grant deadline can't cure though, hopefully. More to come......

A New Beginning

2011-04-11T10:59:00.000-07:00

Bandages off,
First glimpse to be had,
A foreign curve, emulating,
A breast once natural and clad.

A diamond patch,
Back skin, no less,
Stitched ever so gently,
Hiding, beneath heavy compress.

Tears gently flowed,
As first sight is revealed.
This emotion, previously hidden,
While courageousness, unconcealed.

Those first moments,
Burned into my soul,
And onto my heart,
Lonely and beautiful.

The emotions of my journey,
Wrapped up in one patch of skin,
Perfectly represented,
By the stitches within.

Time to move on,
Healing, time will tell.
How lucky I am,
To survive, gracefully, the spell.

A new beginning, perhaps,
I will never be the same,
For all I have learned,
For all I have gained.

Latissimus Dorsi Breast Reconstruction Completed

2011-04-04T11:20:00.000-07:00

On March 21, my long awaited latissimus dorsi breast reconstruction (on my right) was completed at Kaiser Hospital by Dr. Gregory Scott and my PA, Cindy Carson. I have not felt much like writing since, but not so much because of the physicality of the process or my lack of brain power that followed. But, because I could not figure out how to best describe my some of my feelings that hit me like an unexpected wave that hits an innocent beach.

In many, many ways, this was my hardest surgery yet. I was an emotional wreck, while in the hospital. This was also the most stressful surgery on my body. (Rather than explaining the entire surgery on my blog, I have included a link to an explanation of the procedure that you can review by clicking here.) The pain is easy for me to handle. I feel a bit like an old pro. I was prescribed narcotics. I am off of them now that the doctors are allowing me to take Ibuprofen.

I think what I could not wrap my head around was the the fact that my family and I had the least outside support to help with my recovery. I did not come home to flowers or a lot of cards. Only a couple of people called to check in, though many people responded on Facebook to my husband's post that I was out of surgery (thank you!). Perhaps, what was not known, perhaps by our own accord was that this surgery is the event where we needed the most every day help.

I know many would consider this an optional surgery. The cancer being gone kind of takes the drama out of the need for the surgery itself. However, the surgery was not optional in my mind. The cancer tore me down and for my own self image, I needed to be put back together.

I do not mean to sound like I am complaining, either. People are busy; I do not take this personally. My cancer journey has been a long and arduous process. We have had phenomenal support throughout. I just wanted to point out that those of us who have this surgery have little use of your arms. In addition, movement involving the twisting of the back is strongly discouraged. Repetitive motion is also discouraged. To put this in context, I cannot close a car door, carry a purse, sort laundry (much less do the laundry), load the dishwasher, cook dinner or carry anything more than a quart of milk. Two weeks after the surgery and off all narcotics, I have just started to drive again. Though, because of my limited ability to twist, my reaction times are a bit slower. That being said, I am not quite up for running errands, which is OK, because I still cannot push a shopping cart.

So, when I thought about framing this post, I thought it was important to stress these facts. And not because I want everyone to call me tomorrow and ask what I need. I wanted to put these thoughts out here for the next person. The person who might be reading this post and be planning for their own surgery. The person whose best friend is having this surgery and they want to know how to help. The person who does not know what to expect for their spouse.

On a positive note, my new boobs amaze me. To look down and see the diamond of back skin strategically forming the perfectly round shape of my new breast, blows me away. The scars are dark and ominous right now, but I know that they will fade with time. The new, nasty scar across my back does not bother me, because I do not have to look at it, a saving grace. I also have a new, perfectly round breast on my left side, thanks to the implant and the plastic surgery that replaced my original breast (a completely different procedure also performed on March 21). I am happy and proud of all I have endured to get me to this spot. I am proud of my parents, kids and family for helping me to get to this spot. I am especially proud of my husband for all he has endured emotionally and physically (i.e. running the household) helping me to get to this spot.

In closing, I want to reiterate that I did have support and am very grateful. Just in comparison to the support of my past surgeries, it was minimal. I also wanted to thank my mom for doing laundry and my mom and dad for running me and the kids to their practices, games, school events and doctor's appointments; my girlfriends and our family who brought us meals the first week; my brother and Kelly for coming from Portland to be with us that first weekend; and, the people who called and checked in/sent cards. We are truly honored that you took the time to do so. It made a big difference and most importantly, helped me relax at a time where my emotions were all over the place. Which could be another post all together, or maybe better yet, another poem, with the title, "A New Beginning."

Crying While No One is Watching

2011-03-20T06:28:00.000-07:00

Nearly 18 months have passed,
Surviving this long.
So much determination,
So much, so strong.

But when the house gets quiet,
The lights dimmed low.
I cry while no one is watching,
Sometimes hard, sometimes slow.

I cry for my body,
Now tattered and scorn.
I cry for the decisions I've faced,
At times, frightful and forlorn.

I cry for my husband,
And the stress he has faced.
My children, so resilient,
Smiling with grace.

I cry for my parents,
And the rest of my family too.
I can only guess what it feels like,
To watch your child go through.

I cry for those who have gone before me,
Some surviving, some not.
My sisters in this disease,
Too many, hard fought.

My crying makes it hard,
On those who surround me.
So I reserve the tears,
And hold on to fear tightly.

For as a mother, a wife,
A sister, cousin, colleague and friend.
I know you are there.
But, I'm not willing to bend.

From the strength you hold high,
Regarding my truth.
You cling to so dearly,
Your passion is proof.

So, I cry while no one is watching,
Watching others cry too.
Knowing deep down that it's almost over,
One more day, then I am through.

One last surgery,
One last scar.
Hopeful, excited and scared,
Knowing exactly how far.

How far I have been.
How you've been there too.
Thank you, my friends.
Thank you, thank you.

So is the journey really ending?
Most definitely not.
My cancer journey is though,
One last shot.

Glimpsing life after cancer,
Normalcy returning,
My journey moving forward,
Wheels of life turning.

....And no more crying when no one is watching....

Reconstructive Surgery Countdown

2011-03-13T21:27:00.000-07:00

I went to bed really frustrated last night. I planned on working today to help to be sure that I can finish all my work tasks before my last day of work .... and I was frustrated. It was a Sunday. All I wanted to do was have a normal day with my family and do normal stuff and help Steve clean out the garage. That is all I wanted. Instead, I was going to work, in preparation for a surgery that I never wanted to have in the first place.

Do not get me wrong, I always knew I would have reconstructive surgery. I have been jokingly referring to it as, "They are going to put me back together." My sensical way of telling referring to the fact that in eight days I will have "boobs" again.

This whole cancer thing is what sucks. And I am mad. I try to stay positive 90% of the time, but as the surgery day approaches and I think of the suffering that I, and my family right alongside me, will have to endure, my frustration peaks.

Of course, I tell people a lot of different things to mask my fears. I tell people that I think I am a better person after going on my breast cancer journey. I tell people that things could have been a lot worse: I could walk out on the street and be hit by a bus-at least cancer was something I could fight. I tell people that we all have our issues, mine just happen to be life threatening. I tell people all these things, and I mean them.

However, today, my anger that will not be soothed by any of my previous statements.

And what I have come to realize is that being angry is OK.

For the past several weeks, I have had numerous instances that I have been meaning to sit down and write about. Document my feelings and the events that contributed to them. Sharing through my blog has been both my joy and my therapy. A hectic schedule is really to blame for my never getting it done...but a small part of me knows that I just have not wanted to deal with my surgery.

And that is OK, too.

So now, it is crunch time. Pre-ops are done. Blood work, not yet. I have started making arrangements for the kids. I talked to my daughter today about being brave and helping around the house, telling her that a couple months from now, it will all be over, mostly.

And I will get my brain wrapped around what I have to do. I will be in a positive place come next Sunday night. And I will be OK, with perky boobs to boot.

Reconstruction Surgery Scheduled!

2011-02-16T19:33:00.000-08:00

I was riding the elevator to my office Monday morning, when another colleague joined me. She complimented me on my still very short hair and asked how I liked it. I paused, as I usually do when people remark about my hair and told her I loved it. I went on to explain how I had been on a cruise last month and my hair always looked great no matter what the weather.

After exiting the elevator, upon my walk down the hall towards my office, I pondered the fact that I did not tell my colleague about my breast cancer and explain this as the reason for my short hair. I was glad that I did not. She honestly wanted to know what it was like to have short hair and I may have been the encouragement she needed to take to the leap. It was nice to inspire someone outside of my cancer journey. The thought made me smile.

And truth be told, my cancer journey is coming to a close: my reconstructive surgery is scheduled for March 21! When I received the actual date, butterflies flew through my stomach like a race car. Brimming with excitement, I scurried home that night to celebrate.

As the reality of the surgery settles in a bit more, I am a bit more melancholy. I am not so much looking forward to adding another scar to my repertoire. The new scar will be across my right shoulder, which is where they will take muscle and skin to create a breast on my right side. However, I am busy, getting house and home in order, so to speak and am trying not to think about the physicalities of the surgery more than I must. Like the rest, I know this surgery will come and go, as will the pain and discomfort, severe as it may be this time around. Scars will heal and clothes will hide was does not. And as far as the actual risks, I am resolved not to worry. I know I have chosen my surgeon well.

Besides my cute short hair is bound to look chic, regardless.

Missing a Friend, Daria Maluta

2011-01-24T17:00:00.000-08:00

A friend of mine that I met through my/her blog passed away this weekend. Today is her birthday. I cannot say that I knew her well personally, yet I did. Living in Canada, her words traveled across the continent and synced themselves with my heart. Through Living With Cancer, Daria bravely recorded the good and the bad, documenting the raw truth about surviving cancer.

I wish could remember how I met her. How are friendship first came to be. I know that we were blogging friends first, then Facebook friends. We commented back and forth on blog entries and Facebook posts. She was wise. Her kind words always resonated with me.

In one of her last posts, she writes:

Since Thursday’s appointment with my Onc I’ve really been doing a lot of thinking. It’s made me very melancholy. It makes me wonder how much time l have left on this earth?...I am feeling ever so rushed to get things done knowing at any time I could be rushed to the hospital never to come home again. And then there are times I think I might have months to live....

Sometimes, I feel the same way. I think A LOT. I feel rushed A LOT. I am not putting myself in the same boat as Daria, or even the same ocean. She fought for a long, long time. I fought for one year. However, her's was a recurrence, starting as breast cancer 2000 and ending up in her bones, liver and lungs. My biggest fear.

As I type this, I cry. My emotions unchecked. The sick feeling at the pit of my stomach adds to the anxious feeling that has plagued my afternoon and the tears just flow. I tell myself that I am not crying from fear. I will not allow myself to ponder the thought that our cases and treatments were similar. My outlook is much too positive for that.

I DO cry because I have felt her unease. I DO cry because I know that she questioned every health decision that she ever made. I DO cry for her husband who has been lovingly updating her blog to let us all know about her last days and her funeral services. But mainly, I cry because the "breast cancer sisterhood" that I am privileged to be a part of (backwards as that may sound) just lost one of our dearest members. A shining light among the stars.

R.I.P Daria.

Decisions

2011-01-22T08:50:00.000-08:00

This was first published on Writing, Writer, Writest but I liked it so much, I wanted to publish it here, as well. I hope you like it!

This time last year, I had many decisions to make. Breast cancer was swiftly spreading amidst the healthy cells the right side of my chest, each day, slowly surrounding them a little bit more. Though, I could not feel any physical change, my nightmares included young, brave cells battling monsters, their body armor tattered and worn. Chemo had taken hold of every aspect of my life. I was four treatments in....and while I was still smiling, my skin was ashen and every ounce of my being was fatigued and sore.

Little did I know that this would be the easy part.

My mastectomy trumped chemo. They were not able to complete a skin saving mastectomy on my right side - so everything had to go. Flatter than a pancake, I still smiled. I had no hair, but figured out how to wear scarves and hats to hide my battle wounds. I could handle it.

My eyebrows fell out shortly after my mastectomy. I still smiled like it was all part of a well-planned strategy. I always had trouble with those buggers anyway. Always. And with the birth of each of my children, my eyebrows took a vacation, too. I was used to it.

However, the day I lost my last eyelash, I crumbled. I cried a silent tear. I wondered if I would ever be well again. I wondered if I was being punished for being vain. I hoped I would be able to mask my sadness with a good coat of make-up. I cried alone, too afraid to let anyone know I was crying over eyelashes. I wanted to throw something. I wanted to crawl back in bed and give in to the darkness that plagued my heart and my mind. I did neither. Remembering that I am a mother and wife first, I took a breath and hid my sadness.

The decisions that plagued the weeks following were the most challenging of my life. After my surgery, I was cancer free. Chemo was complete. What would come next?

The options on the table were 1) whether or not to have radiation treatments; and, 2) whether or not to have a prophylactic mastectomy on my left side.

I wanted to run away. I wanted to win the lottery and buy a lifetime of health and wellness. I pretended the prank was short-lived and I was the joker that orchestrated it all. I did not want to face the fact that my cancer would never be “in remission”.

Decisions. I had to make them. I had to decide what would buy my life the most time. Which decision would help me best on the craps table? Do I play the hard 6? Or do I play the line? And depending on how the line was interpreted, I was sure that I could go either way.

The reality was that an abnormal cell could be anywhere in my body and at any time decide to divide, as cells do, and metastasize. That was the gamble. Radiation and the prophylactic mastectomy were the best shots I had to rid my body of abnormality. They both had serious risks and traumatic side effects of their own. Not to mention, I had already put my body through a boot camp like no other. I was not sure what I had left.

I did have a couple of tricks up my sleeve. My brother and his wife were in charge of deciphering reports that talked about outcomes and life expectancy. That, I could not face. I could not live in the “what if’s”. And words like “long-term outcomes” only served to frighten me in deepest crevices of my soul, leaving me shivering and unsure.

So, I thought and I thought. I listened. I rebelled in words and in my mind. I understood the recommendations. The implications on what I needed to do were fairly clear. However, when these decisions were on the table, it was not difficult to find another cancer survivor who made both options work.

For those of you who have been following my story, you know the decisions I made. I had six weeks of radiation treatment and a prophylactic mastectomy. And I did so with grace, dignity and a smile. In my heart of hearts, I knew that I would. I knew that my best chance of surviving stage four breast cancer was to use every weapon in my arsenal. And I did. And I won.

What you would not have read is my daily battle with myself to try to avoid radiation and the prophylactic mastectomy.That private talk show ran through my head at least once an hour. Life served more like the commercials on some days. Distracted and torn, fear was the show host and my future was the only guest.

On the other side now, I have no regrets. I still have some decisions to make. However, I am happy that my healthy cells have their armor back. It is still in need of a shine, but it is far from the tattered and worn state of last year.

Road to Reconstruction

2011-01-16T08:18:00.000-08:00

I went to see my plastic surgeon this week to review the last details of my surgery and receive the last fill of my expander. I have requested that my surgery occur in March but also listed my preference as after March 15. This will better coincide with Steve and the kids' Spring Break.

My doctor also added another 100 cc's to my expander, which now contains 450 cc's. For the first time, it hurts. I guess, I should not say that it hurts, but it is fairly uncomfortable. I know that I can have cc's taken out to relieve the pressure. However, I am reluctant to do so as I am a bit tired of going to doctor appointments. Having cc's taken out would add two more appointments to the docket--one appointment to take fluid out and one to add it back.

In case I have not explained the process, my expander is held in position by muscle, its purpose being to expand the muscle and skin slowly in order to hold the future implant. They add anywhere between 50-100 cc's of saline to the expander with every visit, spacing my visits about three weeks apart. It feels a bit like getting your braces tightened.

Unlike many friends that I have met on my journey, these expansions have never bothered me. Watching my the expansion on my chest grow into something that looks like a breast has been kind of like watching Christmas presents multiply under the Christmas tree as Christmas approaches. Now, fully expanded to the size of an actual breast, I am excited but yet feel more like that pregnant mother whose baby is two weeks overdue.

It think what bothers me the most is the combination of its size and hardness. The thing is as hard as a rock. I move, it does not. When I sleep, the only way I can get comfortable is on my back--and I am a side sleeper. That being said, I always wake up in the middle of the night sore, having rolled onto my side while sleeping.

I suppose, this will all get easier as by body adjusts to this most recent expansion. However, I know it is not getting any softer. My plastic surgeon has assured me that by new breast will feel nothing like its current substitute. Thank goodness!

That being said, I am just keeping my eye on the prize and trying not to think too much about the actual surgery itself because I am really not looking forward to adding another scar to a different part of my body. But this is another blog entry, altogether.

I really do not mean for this blog to sound negative. Actually, I am in a fairly good place right now. I am busy with work and the kids, enjoying most aspects of the crazy, busy lifestyle we have made for ourselves. The kids sports are gearing up as they usually do this time of year, with their participation in soccer, baseball, softball and gymnastics, all running at the same time. They are growing and learning so fast, I do not want to miss any of it. Work is busy but rewarding, as I continue to adjust sans a more hands-on supervisor. Life is good.

In closing, I am thankful every day that I survived cancer and the only thing I have to complain about is a rock-hard, fully filled expander on the left side of my chest. And what I have not mentioned is my excitment of having a breast on my right side again. No more prosthetic, yay!!!!! My road to recontruction is coming to a close and I could not be happier.

Cruising into the New Year

2011-01-06T14:52:00.000-08:00

The holidays were an emotional journey for me this year. A journey full of memories of last year, both good and bad, encompassing how far I have come, both physically and figuratively. Lucky for me, this journey also led me onto a cruise ship for an 8-day trip aboard the Carnival Spirit with my husband and kids.

The trip was planned this past summer, after we were forced to cancel our summer vacation so I could undergo radiation treatments. I desperately needed a vacation on the books. My husband and I knew that a cruise could be enjoyed no matter my state of health, strength or physical ability. And so, it was planned. Booking far in advance, we were able to get a great deal on a great room with a balcony. Pure heaven!

The trip was just as we hoped. We relaxed. I got a massage. The kids made nice friends. We enjoyed the ports of call. We danced. We ate way too much. As I have not had reconstruction yet, there were a couple of moments for me that were less than ideal. However, the money we spent was worth every penny and I relished in every moment of the cruise with heightened sensibility.

As we laughed and played, the thought echoed in my brain, "If the cancer comes back, my kids will always have the memories of this cruise." The thought comforted me like a warm blanket on a cold morning. The context of the thought did not. It was not until I fell in love with a painting at the on-board art auction that I realized why. The picture is of a woman sitting gracefully on a couch gazing directly at her on-lookers. The innocence portrayed by her eyes, body language and even in the choice of colors struck at my core, touching me so deeply that I cried.

I put it into words for my husband when he asked me who the woman in the painting reminded me of. Without hesitation I answered, "Me".

Upon further reflection, I deduced and shared that she represented the innocence that cancer stole from me and my children. The caution that inhibits a cancer survivor. The fear that will live in my children as they are situated on what I envision to be a "most watched list" for signs of cancer. I think back on the days when I was in high school and college. I did not have a fear in the world. I was young and strong. Death and illness was not something I knew or thought about. I did not take my vitamins. I lived in excess of all of those things that young adults live in excess of. Full of potential and free from fear, I celebrated life with the joyful pleasure of the child who knew no different. Now, my kids know different. They understand life as a precious gift that once broken, can only sometimes be fixed. Their innocence is what cancer stole from us. That innocence is what I see in that painting.

I am realistic, too. I expect there will be a many, many times that my kids will choose to ignore that they are at risk for cancer. I know they are not aware of this fact now. Hell, I try to ignore my risk for recurrence myself. However, I know better than to dwell in my fears. I will teach this to my children. As Oprah stated so eloquently, "Live your best life." That is the end game. That is what this cruise was about. And when I look at the smiling faces pictured below, I know that we accomplished just that.

Happy New Year, all!!!

A Christmas Carol

2010-12-18T17:20:00.000-08:00

Everything was cancelled this weekend, for me anyway. Soccer tournaments (rain); a birthday party (not actually cancelled, I just did not go); basically all of the plans for the weekend that I had as of yesterday afternoon. I have a head cold. nothing with a fever; nothing particularly notable about it, just a head cold. But man, am I sick!

I have been fighting it all week, taking plenty of vitamins, sleeping as much as possible, the usual. And I thought I was getting better, until about 10:00 on Friday morning. When suddenly, I realized that I should be no where near my office.

However, instead of coming home and going to sleep, I began addressing our Christmas cards. Instead of adhering to our couch, I made myself busy with Christmas-type things. Around 4:00, I succumbed to my sickness. As my body relaxed, the cold hit in full force and it sucks.

Sitting here today, though, I am appreciating all that is holiday. I am enjoying our tree. I am proud that we actually mailed our Christmas cards today, hoping people like the poem that I drafted as a meager way to offer our thanks for all of the support we received this year from our friends and family. We talked about how Santa stops time. We watched a movie and a couple of Christmas cartoons. I made my girl hot chocolate and enjoyed some coffee. I drank Gatorade. Lots and lots of Gatorade.

The best part is...this year, I do not have cancer. Last year, I seem to recall that we did all the same things. However, I also recall an underlying code of stress and anxiety unmatched by anything we had known before. Exhaustion at every step. A tear around every corner. But we did it. Life went on. That was the most important gift of last Christmas season. Life went on and Christmas came. Family came. Santa came down the chimney. He traveled through the night spreading Christmas cheer that cancer could not abolish. LIFE WENT ON.

Perhaps, I am forgetting the nausea or my gray skin tone or the implicit fog that plagued my brain on Christmas day.....but looking back, none of that seems important. I am proud that we got it done for our kids.

Looking back at pictures, I am sentimental. And I think about many Christmas seasons from now when chemo will be a distant memory, when I am completely reconstructed and I think about that special Christmas as a blessing. A blessing that taught me to appreciate all Christmas's past and future. My own Christmas Carol and the ghost that was our escort was my own.

How many people get a second chance like that?

So, I am going to sit on my couch and continue to enjoy our tree. I am hoping desperately that my cold goes away very soon because Christmas is coming. Good thing that most my shopping is done.

How Are You?

2010-12-13T10:50:00.000-08:00

Home sick for the past couple of days I got to thinking that I have missed some obvious opportunities to compose entries for my blog. I cannot even tell you that I remember what they are, because my memory is not my strong suit these days. However, as I put together my family photo collage that I am hoping to use for our Christmas card this year, I started to think about my supporters, confidants and friends, and my intermittent lack of connection through my blog entries.

So, how are you? This is what really crossed my mind. Lovely people have posted comments to this blog. Some of them that I know and some that I do not. Like the friend you never knew that you had, I came to rely on these comments to help boost my confidence and on those days when I felt a little lonely or lost. They reminded me to stay positive. Even though my writing portrayed my positive outlook, I did not and still do not always feel that way. Comments on my blog were the reassurance I needed to help me through difficult moments.

So, I guess what I am trying to say is THANK YOU!

As far as what is going on with me physically, this weekend I have been sick. A winter cold. I fell ice skating a couple of weeks back and bruised my tailbone, too. I am still nursing that injury. My left breast is ready for reconstructive surgery. Though, surgery has been postponed until March for personal reasons. It is hard as a rock though, full of saline and ready for implant. My husband and I laugh about how it just sort of sits there, not moving or wiggling. (Sorry, if that is too much information!)

I also have discovered lately that I am physically very weak. Combined with the fact that my balance is a bit off, I am being more careful than ever. I recently joined the YMCA and am planning to start rectify this, while my daughter attends gymnastics at the same facility. I think yoga might be good for me as well, so I am working on finding time and a class for that.

My Christmas shopping is nearly complete and I am more organized than I have ever been in this respect. Maybe it is just because I am appreciating the holidays a little more? Not that I never did appreciate them, I am just sayin'.....

My kids are participating in their Christmas programs at their elementary school this week and last. I remember being at those performances this time last year, waiting for my hair to fall out from chemo, wondering if the next person who shuffled behind me to find their seat and bumped the back of my head would make it so. I remember it so clearly. It is so nice to have hair again. And a lot of it.

Anyway, I am truly having a joyful Holiday season. Who better to share it with than you all? Thank you for always being there for me this year. Thank you for reading my blog. I am truly honored.

RIP Elizabeth Edwards

2010-12-08T22:09:00.000-08:00

I do not follow the news as I should. I rarely follow politics. Only enough to keep up in conversations and about issues that are important to me around voting time.

So, when following the John Edwards presidential campaign in 2008, I have to admit I did not know a lot about the guy. I thought he was fairly handsome. I thought it was remarkable that he had young children. I vaguely remember hearing of Elizabeth Edward's breast cancer diagnosis. I also vaguely remember her cancer fight seeming minimally affective on her husband's political aspirations. I do not know that I had an opinion one way or another. My memory does not work like that. People's ailments were not something I understood or thought much about until I got sick, selfish as that probably sounds.

Yet, recent news of Ms. Edward's decision to stop treatment followed immediately by her death has affected me greatly. I have read several blog posts. I have heard the news. I have searched for her diagnosis to see if it matches mine. I have searched for the timeline of her treatments. I know the obvious - just because Elizabeth Edwards suffered a cancer re-occurrence does not mean that I will. I hope not.

I just think to myself, "Self, you are so lucky."

Then I think some more. I think of the tears her family must have cried through out their journey - because it was their journey. I think of the fear that must have plagued them for all of the little and big symptoms and side effects that they endured together. I wonder how much her children knew and when they knew it. I think all of these terrible thoughts. I am raw with them, as if they were mine. And I cry for the moments that cancer stole from this family and for the pain it inflicted.

I hope these children find beauty in their mother's fight. I hope they feel her strength encircling them. Her outstretched arms never further away than a warm summer breeze or the quiet reflection of the rain. I bet they do. I bet they find that and so much more. They deserve so much more.

I am inspired by Elizabeth Edwards. Not just by her sensationalized fight against the ravage beast that took her body, but by her spirit. A mother with young children. A fighter, an activist, an intellect and an expert Lego construction helper to her children. I am sad for her family. I am afraid for mine to.

The cancer is something I cannot control. Should it be lying in wait for me, I will go on. Thank you Ms. Edwards. Thank your for leaving your legacy of strength behind. Thank you for reminding me just how fragile we are....and that sometimes, no matter how hard we fight, we do not win. I am awake now. I am a survivor. I plan to keep it that way.

3-Day in San Diego

2010-12-02T23:13:00.000-08:00

I wrote the poem below after returning home from watching the finish of the Susan G. Komen 3-Day Walk in San Diego. For those of you that are not local, it rained all weekend. My daughter and I went down to hand out treats for a couple of hours that Saturday morning. All four of us went to the finish on Sunday. What a moving experience! I am so grateful for those who walk year after year and so proud of those who braved the rain this year. What a sisterhood I have joined through being a survivor! I am inspired.....and so, I write.

Rain pouring down,
Feet never stop.
Except to nurse a blister.
A single step, a hop.

Pink all around,
Smiles unaware,
Of scars they are healing,
With passion and flair.

Hope is the wish,
3-days, 60-miles,
They keep going,
Steps constant, single file.

In memory signs,
Posted along the way,
Angels floating,
By will or skyway.

Sisters in hand,
Husbands, sons too,
Bras on the outside,
Tears there too.

Legs soar,
Eyes bright,
Friends wishing,
Encouraging the fight.

Thanksgiving to follow,
This glorious quest,
Blessings abound,
Maybe a seat empty, lest.

We bow heads,
As we say grace,
We remember the rain,
What sisters have faced.

Thankful, I am.
For all listed above.
For every step taken.
Every step full of love.

Anniversary

2010-11-14T16:30:00.000-08:00

I love salami sandwiches. To satisfy my craving, I made one this afternoon, even including mozzarella cheese, an additive I usually avoid to save fat grams. The sandwich was made even more delectable when I toasted my favorite wheat bread. Satisfied with my creation, I took the sandwich outside in order to enjoy to sunshine and admire the passing golfers.

Relaxed and content, I glanced to my left and spied my grandma’s, DeeDee’s rose bush. For those who do not know, we purchased my grandma’s house from my parents about 10 years ago and there are certain aspects of the house that will always be DeeDee’s. One of them is this white rosebush. Today, I noticed that the petals on the roses were extraordinarily white, wherein they are usually more of a cream color, were usually brown around the edges and often had pinkish spots on the petals. It was a bright day, but even as I approached, the lily white color reflected the light in a way that I never remember seeing before. I was puzzled. I never care of the rose bush the way I should. Our gardener only trims it back, year after year.

As I returned to my seat on the patio, I had a fleeting thought that the rose, pure and beautiful, reflected my own self. Pure and beautiful. I thought the dots were like my cancer and the not so beautiful cream color with tattered edges that the roses used to be, represented the way my life was prior to cancer. Very symbolic, in my mind. I had a moment.

I was diagnosed with cancer on November 12, 2009. I celebrated my year anniversary of survivorship on Friday. My husband bought me an exquisite bouquet of pink flowers. We celebrated dinner at the Bali Hai Restaurant, where we splurged by ordering hors d’oeuvres and dessert. We talked. We laughed. We reflected on where we have been and where we are going. I shared with him my inner most thoughts about the person I am today. A survivor.

So, the day after this celebration, as I sat and admired this beautiful rose bush. In my yard. At my house, my children inside doing things that kids do. My husband busying himself with chores. All is right in my world. And the image of DeeDee's beautiful white roses will be forever be burned in my brain as a symbol of my past and my future.

Mirror

2010-11-12T16:06:00.000-08:00

The post below was first published on the site where I am a regular contributor, Writing, Writer, Writest. Though inspired through a WWW topic, the piece is deeply personal, so I wanted to share it on Nip It as well. Enjoy.

I have mixed feelings about the mirror. Sometimes it glares at me stonily. Sometimes it boosts my confidence. Sometimes it is indifferent, as if I am just one of its many minions for which it does not have time to pass judgment. Always, though, the mirror reveals the ravaged scars on my chest where breasts once perched. Always, it tells me if my wardrobe choices succeeded in hiding said scars. Always, the mirror shows all, tagging me awake, as if to say, “you’re it!”, as it turns and runs away.

Mirrors have been my enemy this year. They were the impoverished newspaper reporter thirsting for a real story who always settled for the scrupulous scandal where truth was subjective and lies breached even the sweetest memories. When I lost my hair and wore my buttery soft sleeping hat for the first time, I did not recognize the person in the mirror. That person was a cancer patient. I cried. I remember the moment clearly. Months later, a steady gaze in the mirror revealed one remaining eyelash on my lower right eyelid. I became practiced at only employing focused glances to check specific features of my appearance.

However, I love clothes. In fact, I am not ashamed to admit that retail shopping is almost guaranteed to change my mood. Putting together a really great outfit will do the same. You need mirrors for that. Sometimes more than one.

My colleague teases me about my extensive wardrobe. Truth be told, she is right. I have a lot of clothes. However, I work in an industry where appearance is crucial, where shoes are shined and shirts are pressed. I feel justified in always having “the right” thing to wear. It feels good. It helps me walk tall.

I have needed that lately. Clothes fit awkwardly and I consistently misjudge necklines I think will completely hide my scars. That said, dressing usually requires time to try on two or more outfits, my discerning eye for fashion not easily satisfied. For example, a typical flip through my closet reveals an article of clothing that I would like to wear. Sometimes it is a shirt, sometimes just a belt. I then go about deciding if my clothing inspiration covers all it should. As the layering of the outfit progresses, I feel like I am donning a costume, the costume that helps my mind go on, even if my body has temporarily lost its will.

Stuffing my bra is another morning ritual, one I usually complete with haste. Seeking perfection has no place right now. It is an odd thing, really, and it’s further complicated by the fact that I have no nerve endings in my chest wall. As my bra and its contents slip around throughout the day, I don’t receive any sensational warning that something is out of place.

Carefully, I spot check throughout the day, still avoiding the mirror.

I think nearly everyone has a love-hate relationship with mirrors at some point in their life. There is a particularly vindictive ceiling-to-floor mirror residing on the wall with the elevators in the building where I work. It is impossible to avoid, unless you plan on tramping up and down the ten flights of stairs leading to the fifth floor. In the sordid moments spent waiting for the elevator each day, this mirror takes pleasure in reminding me that my clothes do not flatter my shape as I thought they did when I put them on in the morning. I think it also conspires with the overhead lights to accentuate the bags under by eyes, usually making my skin look painfully sallow. I make it a practice to hit the elevator button and then stand five feet back and to the side. It’s a little dance I have learned over the years . . . not letting the mirror have a spot on my dance card.

These days, my bathroom mirror is sometimes kind. I enjoy a sprinkling of good hair days, make-up helps to accentuate eyebrows, and my eyelashes have grown back and don mascara. I think I will always have misgivings with every glance in the mirror; I cannot imagine a woman who does not. But one day soon, I know the scars will not be all that I see.

To a Grapefruit

2010-11-11T07:57:00.000-08:00

My expander was filled with 100 more cc's of saline yesterday. Or as Steve put it, "It went from the size of an orange to the size of a grapefruit." As I am writing this, it occurs to me that I do not know quite what to call "it". It is not quite a breast in my mind. It is more like a section of skin that is slowly expanding with every visit to the plastic surgeon.

I will say that it makes me happy to have "something" on my chest big enough that matches the size of my prosthetic, which I have resumed wearing. Wearing my prosthetic means I get to wear my pretty bras from Nordstrom's. I know my women friends understand: pretty bras just make you feel more feminine.

So, to the surgery....This week, Dr. Scott officially filed paperwork for my reconstruction. He estimates up to a six month wait, but at the same time, was fairly confident that I would be able to have surgery in March 2011. This is my goal month: far enough away from summer to where I will be fully recovered for our family vacation yet after State Cup, when Harrison will end his soccer season. Of note, I am making special dispensation for State Cup, as it involves at least one weekend of travel. Since we have never been, I did not want Steve to be in a position to have to go it alone. (Plus, I heard the parents have just as much fun as the kids do....and I do not want to miss out!)

I chose my implant: gel. Also, known as the "gummy bear" type. We talked about my options for surgery again. I am confident. I have one more fill on my expander to go, unless we decide to over fill. It still does not hurt or cause me any discomfort.

Finally, Dr. Scott and I spoke of my plan to run a half marathon in February. He is 110% behind the idea as he feels that people who have been through what I have been through desire a sense of physical accomplishment. That, and he agrees that my training will help prepare me for surgery, which will be my most painful, trying surgery to date.

I can hardly wait for both. Today, I am nursing the start of what could be shin splints. I used to run on the Cross Country team in high school, so I am familiar. They worry me a bit.....but I hear that a lot of stretching will help to curtail their painful affects. I will keep you posted....grapefruit and all........

Strange Week

2010-10-30T08:50:00.000-07:00

This morning, I awoke to words raining through my head like a blizzard. Their subtle impressions coaxed me out of bed early for a Saturday.

"I need coffee," I thought.

The stairs leading to the kitchen seemed like a mountain. My body is tired. It has been a busy week and in reflection, a strange week. The news of my immediate supervisor, Chuck Day's resignation from Rady Children's to pursue a much deserved career opportunity had me wearing my emotions on my sleeve all week. My career working for Rady Children's Hospital spans more than 14 years; I have worked and been mentored by this dear man, truly one of the best in his field, for seven.

Through my cancer journey, Chuck had faith in me, in the job I could do; even when my perfectionist self did not. And I am not necessarily talking about the the last year, when I have worked a sporadic schedule. I am talking about the period of time before my diagnosis when I was clearly not working to my full capacity. I knew it. He knew it. We just both hoped it was short-lived. Little did we know that cancer had hijacked my body and slowed my abilities to a stand still.

In addition, while working for Chuck, my writing skills have soared. In fact, when I first started writing in this blog, I like to say that I was "channeling Chuck." I would think to myself, "If Chuck were to edit this, what would he say?"

"Bigger vocabulary" "That is an awfully long sentence, isn't it?" Will is stronger than would." "Use 'over' correctly"(which basically means I use 'more than' a lot). And so much more. Chuck is a relentless editor.

Getting back to my week, I had an appointment with Dr. Sweet on Monday. The appointment was standard follow-up and he did not tell me anything that I did not already know. I am to watch for anything out of the ordinary and report back to him. I laughed nervously when he said, " I do not exactly what that might be." I will see him again in six months.

I also spend a fabulous evening with the Young Survival Coalition, at the SK Sanctuary Spa in La Jolla. Dr. Stephen and Lynn Krant, the spa owners, donated services of the Sanctuary for the evening. I had a luxurious massage and facial. We listened to a great speaker named Stephanie LaRue. Once again, I was reminded that I need to eat right. I was reminded that cancer is an unpredictable animal that pounces when you least expect it. That lurks in the background waiting for its chance to invade. That chemo does not always work. Sometimes, I come away from gatherings with other cancer survivors feeling scared for my future, or lack there of it. Sometimes, I just feel pretty darn lucky. But always, I enjoy being around these incredible women whose personalities light up a room.

So this week has been strange. The highs and lows that I wrote of here were followed by a sequence of other important activities that I will not document but were taxing just the same. Coming into Saturday, I am OK. I would not have changed a thing about this week, outside of maybe my boss leaving. But then again, he deserves more recognition for his numerous, astounding accolades. I am happy that he found just that.

The Game of Life

2010-10-22T23:02:00.000-07:00

I just finished a rockin' game of Life with my kids. The Sponge Bob version to be exact. Harrison assigned himself to Mr. Krabs and Madison was Sponge Bob. I got to be the paperclip. (We are missing some game pieces.) Harrison was the banker. Madison was in charge of the game cards for which she sang every word on the card in perfect pitch during the entire game. We worked our way around the board experiencing job changes, pay days and expense cards. We laughed and we bickered. We even danced a little. Mr. Krabs, the cheapskate by character, won. Kind of fitting, I think. As was playing this game on this night after this week.

Today, I was presented with an opportunity to be a part of a research study on nutrition for cancer survivors. However, only survivors diagnosed with cancer in stages I to IIIa qualify to participate. I did not think I was a fit, but I called Steve because I wanted to know for sure. For those of you who have read my past blog entries, you may remember that I never wanted to know my stage. Thus, I don't. I knew it was bad. I knew I had to fight a monster regardless of heavy weight ranking.

Steve knew definitively. "You were stage 3c or 4a, " he said. "The doctors said that it was stage four because it was inoperable but was downgraded to 3c when the chemotherapy worked."

Oh.

"I really defeated a beast, didn't I?" I said.

"Yes, you did, honey. I am proud of you."

I was fighting for my life, after all. This past year, when people used that expression in regard to me, I always thought they were being over dramatic. Hmmm...maybe I was wrong.

Yesterday, I had a doctor's appointment where they filled my expander. The expander now harbors 200/350 cc's of saline, which is gradually being added in order to prepare my skin and muscle to hold the implant. While I waited in the quiet procedure room, I had a moment to reflect on my strategy for living my best life in the short term. I have been in such a rush to complete my journey that I had not thought in depth about the repercussions of having my last surgery immediately after Thanksgiving. I know how strong I am and how much I can handle physically. However, what I had not considered is what I can handle mentally. During this brief sanctuary of quiet reflection, I concluded that I do not want another Christmas season like the one I had last year.

I have a vivid memory of last year's Holiday Sing at the elementary school. Sadly, I do not remember anything about my child's performance. What I do remember is that my hair was falling out in clumps from the chemotherapy. I remember telling myself that my hair falling out was a good sign in that it meant that the chemo was working. However, inside, my heart was breaking. That night, I had clipped my hair up in a style aimed to hide my growing bald spots. I was sitting in the front row of the auditorium and people were filing in to sit in the row behind me. The rows were narrow and some parents inadvertently bumped my head as they squeezed by. I remember thinking that if one more person bumped my head that all of my hair was going to fall to the ground. I was astonished that it did not. That bitter memory is burned in my brain. I want to replace it with new ones.

This year, I want to go to ALL of the holiday parties. Go to my kids' school performances. Go to the December and January soccer tournaments. Bake cookies. Wrap presents. The kids are getting so big, so fast. At ages seven and 10, it will not be too much longer before Christmas loses its bright-eyed wonderment - which to witness is truly one of the best rewards of being a parent. I do not want to miss another moment.

So, playing the game of Life tonight with my kids tied my week's experiences up in a bow, like a gift. A sweet reminder of what could have been or not have been as the case may be. How lucky I am. How blessed I am to have countless more chances to sit around the coffee table in my living room and play a board game. I'll take being that paperclip and any Life expense cards you can throw at me. Mr. Krabs, I want a re-match!

Radiant

2010-10-13T17:10:00.000-07:00

"Marsi, you look radiant. I am so happy to see you!", exclaimed my colleague as she offered an affectionate hug upon my arrival at her office.

"Happy to be seen," I said, my standard reply.

This is how my conversation started, yesterday afternoon. This is how many conversations start that I have had since I went back to work. In this instance, my colleague is truly one of the most genuine people I know. Smart too. She has a heart of gold and the success that goes along with a smart person who is generous with her time and gentle in her manner. She is a grant officer for a large foundation. We have spent many lunches together, dining over discussion of children, soccer, vacations and our work.

As usual, we had a wonderful lunch together. We laughed. We talked about her the family cruise she had recently taken. We talked about business. After spending the lunch hour with one of my favorite people, I ventured back to my office satisfied. However, as my thoughts became solely mine and I started to strategize how to attack the work on my desk, my mind wandered through what had been our conversation of the afternoon. I thought to myself, what about me is so radiant? How is it that everyone keeps telling me how good I look? What am I missing?

Looking in the mirror myself, I see the same Marsi that I have seen for the past 39 years. My hair is shorter and curlier than ever before, but for the most part, it is the same Marsi. More than that, I have gained weight. Not anything to worry too much about. Just enough that the smaller clothes that were fitting me last month, are not fitting so well right now. It is almost as if the weight I lost on the top went right to my hips. It hardly seems fair, but then again, what about this disease is fair? Of course, the disease has nothing to do with it. The dark chocolate covered acai berries with blueberry from Costco, had everything to do with it though!!

Not to give anyone the wrong idea here. I am not fishing for compliments nor do I have low self-esteem. When someone tells me how "good" I look or that I am "radiant", I just sometimes feel like saying, "As opposed to like death warmed over?" I realize that people do not know what exactly to say sometimes and are just trying to be nice. However, like in the case of my colleague, that is not her style. Genuine to the bone, I know she would not tell me how good I look, if she did not think so. So, then what is it?

Like everything else in my life, I tend not to dwell on things too much. Maybe she just liked my shade of lipstick. Either way, I will take it. And if you want to call me radiant too, well then thank you. Goodness knows, all the support in the world has been thrown my way over the course of the last year. And this is just one more show of it and for that, I remain grateful.....and radiant.

When it isn't Cancer - by Ann Gregory

2010-10-11T07:58:00.000-07:00

The blog entry below was written by Ann Gregory, a fellow cancer survivor, for her blog, Ann's Fight. I was touched by her by her words, particularly the last four paragraphs. However, to put them in context, I copied the entire entry. She is a very inspiring woman, a fighter with a positive spirit. Go, Ann! Go!

Upon first being diagnosed with cancer, my world simply stopped for the barest second and I could feel something shift and click in my mind. Every-day Ann traded places with a woman that I'd never relied on and that part of me that is a survivor emerged. My vision in that moment was so intently trained on my doctor's discomfort at delivering a cancer diagnosis to a perfect stranger only a few years younger than himself. I could hear those traitorous cloned white-blood cells rushing past my ears as my heart exploded with every beat. I had cancer.

I don't have cancer anymore. Haven't since achieving second remission in July 2008. Now I must live my life in that moment after cancer. Knowing that the genetic defect that lead to the first cloned white-blood cell may lurk deep within my bones is cold comfort.

I don't have cancer. I am living with the aftermath of treatment. My new immune system still doesn't like the decor of its new vessel and has decided to do a little redecorating. It's been working on my eyes and skin for some time now. Lucky for me, the drugs I've been using to keep Ann 3.0 under control worked up until a few weeks ago. The immune system has decided that my lungs, liver, eyes, skin, mouth, and fascia have got to go. The only way it can do this is to kill them as it would an infection. It hasn't quite keyed into the fact that we're all one and the same.

My breathing became tricky and my lung capacity reduced to 59%. Walking to class felt like running a mile. My liver became swollen and my abdomen became uncomfortable. All of the other nuisances magnified ten fold.

I have missed a lot of school for medical reasons. I had to see THE SPECIALISTS and have a liver and lung biopsy. Post transplant, when you have to see a specialist, you're going to see a doctor who deals with things they don't usually go over in medical school. I had three weighing in along with my transplant specialist. They all cautiously agreed that I had GvHD.

I'm now taking 64mg of methylprednisolone in addition to tacrolimus to try and pull the immune system back into line. My immune system is back in the toilet. I must now take three antibiotics, and antiviral, and an IV anti-fungal.

I was surprised with the news that a new PICC line would be inserted into my arm on Wednesday in order to be able to facilitate infusions. I had a little break-down after it was inserted. It all had to do with being frustrated. Frustrated that I have a tube sewn into my arm; frustrated that the IV nurse who did the procedure wouldn't write orders for dressing kits or heparin unless Chris took the training class to get re-certified. Chris has given me infusions and changed my dressings from the beginning. He's taken the class three times. He wasn't with me because I was just supposed to be having a check-up. There'd been no mention of a catheter insertion. It all coalesced to overwhelm me and I ended up crying in front of my transplant nurse. I don't cry in front of my doctors and nurses. I do cry when I get mad or frustrated. I hate the fact.

My nurse was great as was a former nurse who tracked me down to give me a hug. Chris and I returned to MD Anderson yesterday so he could take the class yet a fourth time. He wasn't able to challenge for a demonstration since the clinic was so short staffed. A local company is delivering heparin and dressing changes, so we should be covered. Chris can do this in his sleep. I can walk you through it step by step, as well. The only reason I can't do it for myself is that the line is in my upper right arm and I am right handed.

It's been a very emotional two weeks. My transplant doctor encouraged me to withdraw from school. The steroids wreak havoc on my body and with my moods and academic ability. I have reached a compromise. I dropped down to two classes. The two professors teaching know exactly what's going on and have shown me a lot of kindness as far as assignments and exams go.
I'm disappointed.

I also continue to learn the lessons that come when it's not cancer.

Just because someone you know has been treated for cancer, it doesn't mean that it's ever over. They are struggling with the life that comes after treatment; as a result of treatment. Don't think your friend/acquaintance is finished and has hit the ground running. Above all else, don't tell them that you had no idea that chemotherapy wouldn't be the end of it.

I have heard all of these things. Most of you have as well. I resist the urge to unleash on the most clueless of my acquaintances who continue to tell me that they had no idea regardless of the number of times I tell them that I'm in this for the rest of my life.

Life doesn't stop, it only takes a different fork in the road. The quality of my life is good. This latest set back will only be a nuisance for me, because I refuse to let it become something more. I will finish out this semester. I will take two classes next semester. I will continue to be available to anyone who wants to talk about cancer and the treatment process. I will hold hands and give out hugs and offer comfort. Because I can.

Hats Day Out

2010-09-22T10:11:00.000-07:00

I wrote the following for another blog where I contribute, Writing, Writer, Writest. Enjoy.

Hats. I own a plethora of hats in all shapes and sizes, in all colors and fabrics. Hats that keep my head warm; hats that help me hide from the sun; hats that I sleep in at night; even a striking, red pompadour that I wear when I want to sport a little attitude. One of my very favorites is a modified baseball-style hat in a black and white houndstooth fabric with an embroidered and “bedazzled” breast cancer symbol across the front of the hat and the brim. It was given to me by two of my very favorite girlfriends who found it in a boutique while shopping. The hat feels more like a stylish accessory rather than something worn to cover my mostly bald head.
So, it was no surprise that when my mom took me to Wal-Mart to shop, I wore this hat. I remember the day clearly. It was sunny outside. I had completed a chemotherapy treatment the week before and I was just then feeling well enough to venture out of my house. We wandered through the store, selecting our wares and checking things off my list. We had just made it back to the front of the store and were preparing to check out. It was then that a woman approached.

The woman was small in stature. I remember thinking that she looked like she had just rolled out of bed, though her clothes seemed clean. She had short hair and was middle aged. As she approached, she reminded me of a puppy, looking for some attention, drawn to me like a magnet by the breast cancer symbol on my hat.

She told her breast cancer story in what seemed like five seconds. I was not feeling well and did not want to encourage her, but I was polite. Her conversation was going well, me not saying more than two words, until she took off my hat, unprompted and said, “How long have you been in chemo?”

I was completely bald at that point of my treatment. I was only showing my head at short intervals that usually revolved around some sort of hot flash (another story all together) or shower time. Not only that, but I hated the breeze on my head. It freaked me out a little. Not that I declined to show my head when asked by friends or other appropriate times. I just preferred to do so in a private setting. Not in the middle of Wal-Mart. And certainly not for a stranger.

In her defense, there is a true sisterhood among breast cancer patients. We share stories, we share advice, we share meals and sometimes even share wigs, clothes and bras. In addition, there is something that you lose when you are expected to talk about your breasts all of the time: modesty. Topics that were once viewed as “TMI” are suddenly acceptable dinner conversation. These two phenomenons were an obvious influence in this woman’s need to see my bald head.

Still, as the woman gregariously exposed my head to the fluorescent light of Wal-Mart, I was feeling none of those things. Shock gave way to immediate thoughts of anger and resentment. My hat was my safety net. My hat and this one in particular, is what reminded me that I was still a hip, cool chick. Someone peering underneath it, gave away my disguise and took away a piece of my armor that helped me to keep smiling even when all that I knew to be beautiful about myself was slowly being taken away.

However, I felt the need to appease this woman. Rude as her actions were, I could tell she was lonely. I could tell that the bond of her breast cancer sisters might be her only support system. I thought, “Karma”. Through out my struggle with breast cancer, my golden rule was that my direct and indirect actions played a role in my healing process. I felt that displaying my distaste for this woman’s actions would hurt her feelings, and more specifically, my choosing to not hurt her feelings created positive energy that would ultimately come back to me in some other form.

So, when she removed my hat, I just smiled and answered, “I have been in chemo for four months.” I closed the conversation as quickly as I could and sought the comfort of home. Done and done. Her feelings were spared. I shed a tear and got over mine. She left feeling good about herself. She probably even thought she helped me in some way.
Currently, I am a patient with a “history of breast cancer” and almost a full head of hair. The cancer is gone; the hats are not. They sit in my closet waiting for the day that I will pass them on to another breast cancer survivor. I know that day is coming, but in the interim, in a strange way, I am comforted just to know that they are waiting for me, should I need an extra piece of armor for whatever reason.

Size A, Revisited

2010-09-18T09:32:00.000-07:00

At the time of my surgery, my doctor inserted an expander filled with 50 cc's of saline. This week at my post op appointment, Cindy Carson, PA added more. It was a fascinating process. The expander valve is located towards the bottom center of the expander. Cindy used a magnet to find the valve and inserted a small needle. Before she inserted more saline, she pulled blue fluid out of the expander to test that the needle was in the right place. After seeing the blue fluid, she added more saline.

First, I would like to say how much I like Cindy Carson. She is definitely straight forward. But, she also has a kind gentleness about her that I really appreciate.

Second, the procedure did not hurt as much as I thought it might. Similar to my right side, I have very few active nerve endings in the breast area. Cindy recommended that I take Motrin when I got home for the muscle tenderness that could result from the expander's increased size. My muscles were a little more tender for about the first hour. Still, from what others have told me based on their experiences, I expected a lot worse. Maybe so, as the expander increases in size, I guess. For now, even though I still have the residual pain from surgery, I am encouraged that the muscle pain resulting from the expander process will be manageable. I hope this means that we will be able to fill the expander faster.

With the addition of the saline, clothed, I look like I have a breast on my left side. Unclothed, it reminds me of the shape and size of a knee cap, with a nasty scar from being split open across the top. A war wound.

Emotionally, it has been hard to look in the mirror. The skin has been pulled and pressed over the muscle and the muscle stretched over the expander. The result is skin with distinctive puckers, like a tufted chair cushion. I also feel the muscle flex a lot more readily. I assume this is because the muscle is much closer to the surface.

With this recent expander fill, I can see that the tufting is starting to subside. Cindy tells me that if I end up with divots in my skin that they have ways to fix those, using body fat. She also tells me that it looks the way that it is supposed to look, even describing my skin as looking good. I trust her.

Regardless of how it looks behind the curtain, not many women get to revisit their youth in this respect. (I think I was size A in junior high school.) The weight on my chest is much different from the weight of my chest with breasts. And even more different than the weight I carried mentally when my chest was riddled with cancer. I prefer this weight. Size A, revisited.

Shower

2010-09-12T13:02:00.000-07:00

The following entry describes my first shower after my second mastectomy. So, if this is too much information, you may want to stop reading here. I was recently inspired by my friend, Meg, who shared something deeply personal in the form of a poem. Since I loved to write poetry in my younger years, I thought I would “go back to my roots” for this one.

Nearly Perfect,
Shower after 12 days of not.
The water hitting my skin,
So steamy and hot.

Undressing carefully,
Recognizing my scar.
Air hitting virgin skin,
Only partially marred.

Breast gone.
Matches right side.
Bravery, not so.
Cancer abide.

Stepping into the water,
Refreshing and scary.
Would it hurt, not sure,
Excusingly sparing.

Routinely lathering,
Not reaching, needing care.
Tender touch to rescue,
Holding hand, tears fair.

Not bothered by scar,
Emotions abound.
Needing that hand,
And the kiss that I found.

Hot water renewing,
Strength coming back.
Cancer is gone,
So different, the track.

Learning so much,
Unrecognizably so.
Needing so much,
OK to let go.

Surgery. Done and done.

2010-09-10T08:16:00.000-07:00

I had a mastectomy on my left side and an expander inserted on August 31. Surgery went well. Both pathology reports came back clean! No lymph nodes had to be removed. All good news. I am grateful.

I have felt a range of emotions since this time. Again, grateful for the clean pathology reports; fear when I saw my scar for the first time; disappointment when I could not get my drains out this past Wednesday, as I had planned. The roller coaster was not unexpected. It was my turn to get on it and I have one more ticket to ride for this winter, which will be my last mandatory surgery. Many of my friends have been asking for a timeline, so I will spell it out here.

I am hoping that the drains will come out today. This may be wishful thinking. Regarding next steps, I will know know more specifics after my appointment next week. However, as of right now, it is my understanding that in a couple of weeks, they will start "filling" my expander with saline. As it sits now, the expander is under muscles on my left side. Each saline fill stretches that muscle and skin tissue to hold the implant. They estimate that it will take three months. However, it is all dependent on my pain thresh hold from here.

Once the tissue is expanded enough, through another surgical procedure, they will insert the implant. To avoid having two separate procedures, I will have them reconstruct the right side at the same time. The right side is a completely different process. They will be using my back muscle and skin to construct the breast, as radiated skin cannot be stretched. Supposedly this next surgery will be more painful. As it involves three areas of my body, I can see why. The end result will be two perfect boobs - so mentally, I think I will be in a great place!

As far as timeline, I am eligible for Family Leave Medical Act (FMLA) through my work after November 30. This is pretty much in line with when I would like to have my surgery, anyway. (For those of you who do not know, FMLA is what protects my job.) If I cannot have the surgery in the first week of December, I may postpone the surgery until February. We have an 8-day cruise planned, leaving December 26 and then Harrison has State Cup for soccer (an out of town tournament) mid-January. We are very excited about both!

So, there it is. I have been lucky enough to have loads of support. From dinners to phone calls, cards and flowers and transporting the kids and me places, everyone has just been so wonderful. You cannot know what this means to us. I know I have said this a thousand times, but I will probably say it a thousand times more. You all are the best - thank you!

Surgery Tomorrow

2010-08-30T11:05:00.000-07:00

Sorry I have not posted in a while. I have been enjoying my freedom from treatment and need to focus on my breasts (might as well call it what it is). My mom suggested that I write prior to my surgery tomorrow. I was on the fence about writing this entry but also know that this is the best way to keep all informed. So here it goes.

Tomorrow I am having a prophylactic mastectomy on my left side. They are also inserting what is called an expander at the same time that will prepare my chest to house the implant. (At a later surgery, I will receive the implant and they will completely reconstruct my right side.) I have mixed emotions. In the mirror last night, I could not even look at that breast, sitting innocently next to the scar where my cancer resided. I feel guilty for some reason. It occurs to me that maybe it is not as much guilt as it is fear. Now, I know how the left side is going to look, welll sort of. Maybe this is some sort of punishment for being vain. Maybe.

I joke that my left side needs to be removed because my right side tried to kill me, a sentiment borrowed from a fellow blogger. However, I know that it was not really my breasts that tried to killed me; it was a mutated cell that found what it thought to be a nice, nuturing home and grew. And grew. And grew some more. It grew so well, that it had offspring, who found another nuturing home not too far away. It was this cancer that tried to kill me. Not my breasts.

So, how am feeling about my surgery tomorrow? The woman in me is quietly mourning. However, I know that it needs to be done. I do not want to fight this battle again. Removing the left breast helps to ensure that I will never have to.

Bye, Bye 38!

2010-08-06T19:44:00.000-07:00

At last, my birthday weekend is here. I have been awaiting my birthday with dreaded anticipation. I had one heck of a year. So have a lot of my friends. We toasted to the fact that there are better years to come. However, in really thinking about toasting away my 38th year with a "better luck next time" attitude, I thought about what this latter statement infers. The year of my breast cancer journey. I decided that rather than remember the bad, I choose to honor the good. That being said, here is what I have learned and what has inspired me this year:

My kids are strong. My kids have endured seeing their mommy suffer. Their mommy has had a seizure in public. Their mommy has had six rounds of chemo that turned her skin a lovely shade of gray. Their mommy lost her hair and came to their school with no hair and even with tube attached to her body after her mastectomy. Still, they are not embarrassed. They just hug me and remind me every once and a while that they do not want to see my scar. They make me laugh every day. And they have grown so much this year, I am just glad to be a part of it.

I have fantastic friends. I cannot say enough about what my friends mean to me. They all had their part to play. Something they were good at. Something I needed them for. I made new friends and re-discovered old friends too. I learned to lean on my friends. I discovered that my colleagues and Steve's colleagues are truly some of the most special people I know.

I have a wonderful family. My mom and dad are mine and Steve's rocks. Mom was always at chemo with me. Dad was always at the house helping out. I got to see a lot of Darin and Kelly, who visited from Portland whenever possible. Both of them are wonderful sounding boards and also did all of my medical research for me. Steve's family was in constant contact, "checking in". Tom (and Liz) made sure our remodel went smoothly. And I had constant support from, aunts, uncles, cousins and extended family from all over the country, and even from Iraq and Australia.

There are good people in the world. And I am not just talking about nice neighbors. I am talking about new friends who just took a chance to sent me an email. Parents from the kids' school arranging a card tree. I am talking about San Diego United Futbol League arranging dinners for us for months in a row. Another soccer parent arranging meals from her school and Steve's school at the onset of chemo. These dinners were not just any dinners, they were five course meals with special touches, like home-made cookies, cakes and muffins. Cards and notes arrived almost daily from anonymous senders. The neighbors took the kids to school EVERY day. Amazing. All of you.

I am a valuable employee. I know my craft. I know my donors. There is nothing like being out of the office for a while to help you realize how much you like your job and how well you do your job. I have a new found confidence that I hope is going to lead to a great year.

I love to write. Writing in this blog has me hooked.

I know how to be a good friend, now. I know what to say. I know what to do. I want my friends to know that I think of them all of the time.

I love my husband. After this year, I know we can make it through anything. I heard this song today, and it really inspired this blog entry.

I am strong. Enough said.

I want to live. There is no time like the present. Really. No, really, really.

It goes without saying that I did not enjoy all of my 38th year. I DID learn and was reminded of more in this past year than most people learn in a lifetime. I am lucky for that. So, why the dreaded anticipation of my birthday? I am afraid emotion may get the best of me. I do not know that I am ready for that. But, I hope just to keep moving along and deal with it as it comes. Isn't that the only way?

Sisterhood

2010-07-31T09:16:00.000-07:00

I was inspired this week. Or maybe I should say I was reminded of the incredible sisterhood that comes with a breast cancer diagnosis. My reminder came from a series happenings that individually were not really a big deal, but collectively, their story tells me how lucky I am.

It all started by the pool at my friend, Laurie's house on Sunday. Just us four girls, floating around in a pool talking about a little and a lot, planning Wendi's birthday celebration (Happy Birthday, Wendi!) and trying out a new hors d'oeurvres that Julann prepared to test for her upcoming Pampered Chef show. It was an awesome afternoon. I needed some time with the girls to help gain my focus for the coming week.

To paint a picture of what my week looked like, on my plate were three grant proposals, two important reports to prominent charities and a number of stewardship projects that were time sensitive. All to be completed on my part time schedule. Because a deadline is a deadline, regardless of my limitations, I snuck in hours of work at odd moments, usually getting my second wind about 10:00 p.m. That was my second problem. My first was that the radiation fatigue had finally taken hold. I fell asleep typing for the first time in my life. Not to say all this to complain. I love making a difference. I am passionate about Rady Children's programs and want them to succeed. It was just unfortunate that radiation fatigue peaked and numerous pending deadlines all occurred in the same week. As I tell my kids though, that's the way the cookie crumbles, sometimes.

By the end of the week, just when I had about had it, the 'sisterhood' kicked into high gear. I received a phone call from my friend Nancy, a breast cancer survivor. While we only communicated through voicemail, just hearing from her made me smile. I also made a new friend through my blog and I am anxious to read hers. I stumbled across another new blog that I really like on the Livestrong website and also rediscovered the Living with Cancer blog, a blog I have been following for a while. I was particularly attracted to the Livestrong Blog Entry, Two and Too because Renee, the author had reconstructive surgery yesterday. Renee had posted quite a few pictures of her cancer journey. The pictures were reminiscent of my own journey and had me wishing that we took a few more. Not that all of the memories were pleasant...I just liked the way Renee presented them.

All in all, in reading, listening and responding to messages and posts discovered this week, I am reminded of the sisterhood that exists among breast cancer survivors. Now that I am through radiation, I want to be more of a part of it. I want to be there to help, lend an ear and/or offer advice. I know I have a lot to give. I also know that I have a long road ahead of me too, as I face two painful surgeries. I am lucky to have my family and friends to support me. And more than that, I know I can lean on the sisterhood, that in a backwards sort of way, I am happy to be a part of. This is the good stuff. This is my reward from suffering through cancer. And it goes without saying that my girlfriends who are not a part of the breast cancer sisterhood are still sisters...they contribute in a different way that is equally as important. Love you all, my friends!

Moving On Up!

2010-07-25T08:17:00.000-07:00

So much has happened since I last wrote:

I completed radiation treatments on July 13;
My surgery for my left mastectomy and phase one of reconstruction on the left side has been scheduled for August 31; and,
On July 21, my oncologist, Dr. Sweet, changed my medical record from "oncology patient" to "patient has a HISTORY of cancer".

And this list just represents my treatment and recovery. My family life has been just as exciting:

Steve's school is back in session. Like last year, his sixth period class is a bit squirrely. He has three blind kids and three kids that suffer from Asperger's syndrome in the same class. He is the most requested teacher, again and is great with troubled students. I am sure that the fire safety demonstration is this week - one of his favorites. Look out science world, Mr. White is in the house!
We had to buy a new car. Steve's car finely gave up about a week ago. We love his new car though - the Ford Flex. It is so roomy inside and perfect for hauling around the four of us, plus Cooper (our dog) and whomever else would like to join in on the fun.
My daughter finished golf camp this week. She loves to hit the ball, particularly with her driver. My little half-pint! I guess it is time for me to take up golf, now that both kids have caught the golf bug!
My son and his best friend, Ian, finished surf camp. Harrison proudly reported that he caught six waves while surfing yesterday; five of which he actually stood up on the board and rode the wave to shore. I will not be taking up surfing, I am afraid. While I love the beach, I am not as sure about my relationship with the ocean and in particular its waves. Madison tells me the same. Maybe both of us will change our minds, in time.
Harrison played in two soccer tournaments, occurring last weekend and the weekend before that. They won the Albion Cup last weekend, for Boys U11. We were so proud. I have not seen Harrison that excited in a long time. We are really enjoying the team and the parents too. Looking forward to a great season! The next tournaments are August 7,8 and August 14, 15.

My life is full. My cup runneth over. I am one of the lucky ones. I am confident that there is direct correlation between my happiness and my new, official declaration of having a "history of cancer".

Through a review of Twitter this morning (I just began 'tweeting' last week), I found a great article from Prevention Magazine, 10 Secrets of Happy Women. It is a fantastic reminder of how we should acknowledge special moments that happen every day, find what is best in them and intertwine that happiness, fleeting as though it may seem, into the very fabric of our existence. It is worth it, take it from me! I think this is what got me to this point, and will keep me at this point, for years to come.

Oh, and how am I feeling physically? I am a little tired. Actually, a lot tired. I was feeling fairly faint on Friday and Saturday; and I am guessing it was just from exhaustion. I am resting. My radiation burns are starting to heal. Though, they have been rather painful and itchy this week. However, I have passed the 10-day post radiation treatment mark, so I should feel better and better from this point forward. Yay!

Only two more radiation treatments left.....

2010-07-12T08:07:00.000-07:00

Only two more radiation treatments left. As I was thinking about this last night, I was contemplating all that was going on 23 treatments ago. Harrison's baseball championships. School field trips. Work projects. It seems like so long ago. And, I have been back to work for two months now. I can hardly believe it. Five weeks passed with hardly a blink of an eye.

We are a busy family. This past weekend, my brother was visiting from Portland. Also, Harrison's soccer team played in their first of several soccer tournaments. We had a lot of family time, as we tend to have at soccer tournaments and when my brother visits. It was really nice. One thing that has struck me funny over the course of the last week or so, in talking to people at the soccer tournament and such, is the amount of people who have no idea that I am currently undergoing radiation therapy. I guess that is good. Sometimes in my world, it is easy to get wrapped up in the hoopla that has been my family's life for the past nine months. It is usually all about me.

Admittedly, for the last week, I have been too tired to do much else other than sit on the couch, when I am not working or out and about at a family event. I have a bit more energy than I did through chemotherapy treatments, which is good. However, the intense guilt that results from not being able to accomplish what I would like to accomplish is unbearable at times. Still, I try to let others do for the kids, my house, etc. I am just not very good at it. I get frustrated when things are not done in the manner in which I think they should be, or in the time frame that I think they should be. Then, I do them myself. I just hope I am not driving people around me too crazy, ie. my husband. He is a keeper. (And I am probably driving him a lot crazy, though he would never admit it to me.)

In any case, this phase of my treatment is coming to a close. They did tell me that I can expect my symptoms - which are mainly fatigue and the ugly rash that extends from my collar bone to my breast bone - to intensify after my radiation therapy ends. I am armed and ready.

Hooray for DMV!

2010-07-03T08:02:00.000-07:00

The good news....DMV cleared my driver's license this week. I have not received the official piece of paper in the mail, mind you. However, when I completed my behind-the-wheel test, I was told that I was "good to go". Can I tell you how much I loved closing that door? My February seizure added a unwelcome level of stress to my recovery. Yes, cancer hijacked my health for a bit, but my freedom too? That probably bothered me more than losing my eyelashes. I am just saying.

So, radiation week four - check! I have some pretty angry skin, which is sporting an dense series of minuscule, red bumps, reminiscent of a diaper rash. It itches. It is not going to get any better. In fact, I am told it could intensify and my skin could crack and/or blister over the course of the next two-three weeks. Let's hope not. I am currently wearing a foam dressing across part of my chest, about a two-inch strip starting at my collar bone and extending down to my breast bone. The dressing (Mepilex Lite with Safetak technology) allows the skin to heal from the inside. It is pretty cool. I also have prescription for a cream containing hydrocortisone, stronger than the 1% over-the-counter-strength that I was using at the beginning of the week.

I do not mean to sound overly dramatic. Ugly as it is, it does not hurt. It itches a great deal, but the cream should help. In my mind, just like my hair falling out with chemo, my skin's reaction is evidence that the radiation is working. I need it to work; I want it to work. While my cancer is gone (this sounds more awesome every time I say it!), abnormal cells could still be lingering in my chest wall or skin. And it goes without saying that I do not want any abnormal cells floating around and causing problems down the road. It would only take one.

Needless to say, I am very glad the holiday weekend is here. I look forward to reconnecting with friends both and watching my kids eyes light up as they watch the firework shows both tonight and on the 4th. I look forward to hearing their laughter and excitement as they swim and play with friends. I look forward to relaxing on my couch. Mostly, I look forward to a three-day break from radiation treatments. Only six more treatments to go!

Have a happy and safe 4th of July, all!

Radiation, Week Three

2010-06-26T08:10:00.000-07:00

Radiation, week three - check! I am tired. Very, very tired. My skin is starting to show some signs of trauma - just really small bumps right underneath my collar bone. At least, the weekend will give my skin a little time to recover. At the beginning of the week, I was trying to go to bed early - like before the kids. Towards the end, I did not fair as well, in that respect.

I am really trying not to let radiation get the best of me. I was sad to miss my friend's birthday party this week and since, vowed not to let the fact that I am tired limit my participation in the important things. However, I recognize that I need rest, so I will not be a cranky mommy and also, in order to be productive at work. It is just a balancing game, like anything else. It is a game that I am winning!

At work yesterday, I had one of my most productive days in a long time, completing one grant, one letter of intent, two signed grant agreements and communicating with two other of my most favorite/prominent donors. I remind myself that a day like that would have made me tired regardles of receiving radiation treatments. It has been a busy work week, but I found that it helped me to not dwell on my physical symptoms.

The best part about this week is the surprise visit from my great friend and college roommate, who contacted me Monday just to see if we were going to be around, should she and her family come to San Diego. Great fun. Today, one of my other college roommates will be in town with her family. A complete coincidence - what an awesome treat for me! Our kids get along famously, which makes it even more special. And the fun continues, culminating with a trip to Legoland this coming Tuesday.

Just as fun as all this though has been watching the World Cup with my son/family. I love the way Harrison gets so excited to watch the games. The US played at 7:00 a.m. this past Wednesday. We woke up at 6:58 and it was like we were late for Disneyland or something, with Harrison rushing to find his US soccer jersey in order to watch the game in our own living room.

And my daugther? She is not as excited about the World Cup. Though she did lose her two front teeth this week. A right of passage, in her mind. She is too cute for words sometimes.

So radiation will ensue on Monday. I am trying to stay positive. This past week, I have had quite a lot of help. Next week, I know I will find another avenue of distraction, whether it be World Cup, Legoland and/or a good book. I am winning the game! July 13, my last day of radiation, is just around the corner. The countdown is on!

Radiation, Week Two

2010-06-19T07:04:00.000-07:00

I finished week two of radiation yesterday...week two, less one day (I started on a Tuesday). It has been a hectic week. Nothing too out of the ordinary. Though, the stress of work certainly had me ready for the weekend. I am really trying to take a back seat and let my boss make the decisions in my area of expertise, Foundations and Grants. However, I see things that need to be done and I do them. In the past, he counted on me to make recommendations, consult on department-wide on projects, only consulting him for big decisions and to let him know what projects I was working on. This was all within reason of course. Bottom line, I was accountable to him for all business to do with foundations and grants. Now, he assigns me a list of projects....and I just give him progress updates.

By my own accord, my list of projects is growing, though I am trying to abide by my limitations. I work at the office on Monday, Wednesday and Fridays. I work from home as needed on Tuesday and Thursdays. This past Thursday, I was just too tired to work, even though grant deadlines and other work worries deprived me of sleep the night prior (which may have been why I was too tired to work). The old Marsi would have found a couple hours to work, regardless of how I felt. I did not. I opted to read my book and watch Harrison practice soccer in our backyard. I did good.

So....onto week three of radiation, this week. I am a bit tired. My skin is still doing ok, though I learned the hard way on Thursday how sensitive it is when I inadvertently got sunburned after reading my book outside. Ouch! At least I have the weekend to heal.

I met with my radiation oncologist on Tuesday. She told me that my worst side affects will occur the two weeks after radiation ends. Hmmm.... My last day of radiation is July 13. I am not so excited about dealing with this stuff into August. Steve and I also met with my neurologist on Thursday. Apparently, my EEG shows significant improvement over my previous EEG. Since I am epileptic, as expected, it is still abnormal but improvement? Wow, maybe the chemo had an adverse effect on my epilepsy? Another hmm....

My job for the weekend is to sleep and to make sure that Steve has a great Father's Day. In honor of Father's Day, my friend suggested that we all change our Facebook profile pictures to a picture of our dad. I found a picture that I liked so much that I thought I would share it here too. It was taken at Christmas after my third round of chemo. (By the way, unlike this picture, my hair is coming back in full force....not enough to share a picture here, but hopefully soon!) Included in the picture are myself, my dad and my brother. I love my dad! He is such a great person and my hero, really. Well, both of my parents are my heroes. But this picture is how I always think of him, smiling. Happy Father's Day, Dad. I love you!

Defense

2010-06-12T06:33:00.000-07:00

I was devastated as I watched Harrison hug my mom last night, tears running down his face. It was a hard game to watch, especially knowing that to advance in TOC is something that Harrison wanted so badly.

Baseball. It is so much different than soccer. During soccer, kids get the chance to make 100 or more good plays a game. Well, maybe not 100, but sometimes it comes close. In baseball, not so much. In soccer, Harrison plays every position. He loves to play goalie, or "keeper" as I have learned is the preferred phrase. But his speed and dexterity also lend themselves to forward and sweeper. However, I think he is a natural defender. Put him in fullback on the left side (he is left-footed) and not much is going to get past him. He makes impressive defensive plays.

I felt like that is what he was doing yesterday in his baseball game. Defending. The other team was aggressive. They were playing with intensity and spirit. Opportunities to make those great plays come few and far between. Harrison's team needed to make more of them. Though they rallied, in the end, they fell short.

As I previously mentioned in another blog entry, his team was the SCLL Minor League Champions last year too. They did not make it past the first week of TOC play last year - I think this made Harrison even more driven to make it past the first week this year. Harrison laid his heart on the line. He fought hard, but in the end, popped up his last hit and it was caught in the infield, resulting in out three of the sixth inning. Game over. The Mudcats are not advancing. His heart was broken, at that moment. My heart broke for him.

When I was putting him to bed last night, he looked at me and said, "There is still a chance that we play Monday, right?" There is still a slight chance, based on a complicated calculation that I do not know enough about to explain. (Essentially, there is a three way tie for 2nd place and the top two teams advance.)

His hope is my hope. And there is plenty of that to go around.

Reflecting back on my experiences of the week and in particular my radiation therapy, I realize that hope and defense have been an every day practice for me. As the best defense is a good offense, I slather salve on my skin whenever possible. I also started going to bed at 9:00 p.m. This is very early for me....so, it also means that I have been waking up at 4:00 a.m., having already had what my body feels is a good nights sleep. However, if fatigue sets in, I have already implemented a preemptive strike. I am also taking my vitamins. Or trying to remember them anyway. My memory for this kind of stuff is not fantastic.

Interesting thing, I had a skin care session with a nurse this week, who told me that my worst side effects will occur in the two weeks after radiation therapy ends. Ugh. Obviously, I knew that the side effects were cumulative my skin would take a while to heal...but this means that the harsher side effects may last into August.

I am doing well, however. If there is anything I have learned from Harrison, it is that defense and hope are not mutually exclusive. My success will require a balance of the two. I can do that.

Moving forward, watching Harrison play soccer is one of my favorite things to do. He just left for an indoor soccer game this morning, as a matter of fact. (Go United!) I know it will lift his spirits. Baseball is in the past now...and he will focus his ambitions towards the upcoming soccer season. My little defender. My little princess is sitting next to me on the couch, singing. All is right in my world. Only four more weeks of radiation...and counting.

So today is Steve and my 14th wedding anniversary...

2010-06-08T19:18:00.001-07:00

So today is Steve and my 14th wedding anniversary. It is also my first day of radiation therapy. A bit ironic, I think.

I was prescribed 25 radiation sessions that will occur five days a week, for five weeks. They are radiating the right side of my chest wall and my remaining lymphnodes, which reside under my collar bone. After having my first radiation therapy session this evening, I do not have much to say about it. It did not hurt, though I did feel something. I would equate it too one of those times where at days end you may say to yourself, "I think I am a little sunburned", but it does not really hurt to move. One of those sunburns that would not classify you as a lobster and is gone the next day. Something like that. However, side effects from radiation are cumulative, just like chemo. I guess it is good thing that I am permanently numb (for the most part) on the right side of my chest.

Anyway, I have decided to treat radiation as if it were just a normal part of my routine. I have a theory that if I make a big deal about it, I have given radiation power and its side effects will intensify. Please know that I appreciate offers to help in any and all capacity - but I am going to try this on my own first, as least the transportation and routine part.

And, if you ask me how radiation is going. I might say, "fine" or "it's going". Not that I am asking you not to ask, I just do not want you to be surprised by my answer. I am trying not to get in the habit of complaining, because I do not think it helps me, or anybody else.

So yes, I may be too tired from time to time. Or I may not be able to go to the beach and sit in the sun. But please ask. I will let you know.

And, happy anniversary to my beautiful husband. It has been a tough year. I know this is not exactly the way he envisioned spending any of his days with me, much less an anniversary. Yet, he has been my champion through it all. If you know Steve, you would expect nothing else. I am truly lucky.

Harrison and the Mudcats

2010-06-05T07:23:00.000-07:00

I am so sore this morning. I knew I was tense yesterday at Harrison's championship baseball game, but holy cow!

I write this post this morning, thinking not of my cancer or radiation but about my son. Harrison is 10 years old. He is the light of my life. Madison too. Last night, however, Harrison stole the show. For those of you who know Harrison, you know that Harrison has an inherent, natural athleticism that allows him to hold his own at about any sport he tries. Last night was baseball's turn - championship game for San Carlos Little League's minor division: the Mudcats vs. the Riverdogs.

I cannot say that Harrison made any remarkable plays. I can't say that he hit a home run or made a diving catch. Like in every game though, he hit, he threw, he caught and did his job very well at every position he played. He has the third highest batting average on the team. He has a great arm and is consistent.

Last year, Harrison played for the Durham Bulls and they won the league championship. Last year, Harrison was the pitcher they put in the close the game, with bases loaded and a score of 19-18. We prayed. Harrison did his job, the Bulls defense did their's. The Bulls won. There is no better feeling than that.

So you might imagine how Steve and I were feeling last night. The score was 12-12 and Harrison was the next pitcher in line. But that was not the worst part. All season long, Harrison's team has had a remarkable way of falling apart (sometimes a little, sometimes a lot) for an inning or two and then pulling it together and winning the game. This is not every game, but of course, this is what happened during last night's game. Finally, in the 7th inning, which is overtime in little league play, one of Harrison's teammates stole home and we won the game, 13-12. Us parents started breathing again. Harrison never had to pitch.

I wanted this win so bad for Harrison and the Mudcats, a desire even more intensified by the fact that he was on the winning team last year and would be the only one from the Bulls that achieved this accomplishment this year.

I am so happy for Harrison. He is a champion - two years and a row. Now, we move on to regionals....and Harrison is pitching on Monday night. He needs to pitch the game of his short career. Since he did not have to pitch in regionals last year, this is a new challenge! Count on me and Steve not breathing while he is on the mound.

As I sit here and write this, my family is waking up. My daughter just came downstairs and apologized to my son for being "late". Late for cartoons, I guess. So cute. And even with my sore body and the fact that we have to race off to Harrison's indoor soccer games this morning, I am happy. Cancer be gone and stay that way, please. Yesterday was just a great reminder that life goes on....and so will I.

I visited the radiation machine today....

2010-06-03T21:00:00.000-07:00

I visited the radiation machine today. I had a "mock run" of my radiation therapy. They lined me up. They took x-rays. The doctor gave a sign of approval. I stared right into the mouth of the machine where the radiation will emanate. It looked like it had teeth, as it stood ready and waiting to zap its electronic medicine.

Lying there, perfectly still as instructed by the technicians, alone in the room, the moments felt like an hour. I was emotional, fleeting as it was. I made myself take deep breaths. I thought about how I did not want to go back into treatment. I thought about the cancer and how it was gone. I thought about the beach. I thought about Steve and the kids. I thought about my beautiful skin and what I am about put it through.

I know radiation therapy is the right decision for me. Cancer is a beast. Much more ugly than the machine I laid under today. Not at all discriminating. It does not have technicians that line it up in the perfect spot. And in my case, with my type of cancer, if it comes back and metastasizes, outcomes are not good.

So, radiation is definitely the way to go. I just have to get there. And I will. Emotions in check.

Radiation, here I come!

2010-06-01T11:30:00.000-07:00

So, I have to get my game face on. Radiation starts June 7 and plain and simple, I do not want to do it. All the tests/studies say that I should...and in my head, I agree. Just the mom, the wife and the girl in me is just done. I am tired.

I went back to work, part time on May 20. I am working three days a week for 24 hours in total. It feels good. I like feeling useful. I like knowing that cancer and chemo did not over run my brain entirely. In the week and a half that I have been back, my muscle memory is returning. I still know how to write at the same caliber as before, and I am comfortable with the grant process. Just like riding a bicycle. I am working on a couple of great projects and thriving.

Today, I have a couple of doctor's appointments unrelated to radiation. I have an EEG at 1 followed by an appointment with my plastic surgeon at 3:30. My EEG will put me one step closer to keeping my driver's license and our meeting with my plastic surgeon will help us verify that the plan for my reconstructive surgery that Steve and I have mapped out in our heads is truly on the right track.

And yes, I said keep my driver's license. I have a driver's behind the wheel test on June 30. Last week, I called DMV due to the fact that the paperwork said, "Your license will be suspended if you do not show up." Turns out, they never suspended my license at all since I had the seizure on February 12. Hmm. This does not change the fact that my neurologist recommended that I do not drive. However, in my mind, it does give me "license" to drive occassionally. Afterall, I do not want to go to my driver's test cold. I had enough trouble with that the first time around.

So, I need to get my game face on. I know my driver's test will be just fine. I know radiation will be just fine. Before chemo, to help get me fired up, us girls all put purple streaks in our hair. I do not have enough hair yet to do that. Although, after leaving Ally's shop after getting her hair cut, Madison told me this weekend that she wants a red streak in her hair. Another hmm. Not sure that I am down with a permanent red streak in my six year old daughter's hair.

Anyway, not sure what it will take to get my mind where it needs to be come Monday...maybe nothing. Maybe just another wonderful date with Steve, like I had this weekend (Thanks, Mom and Dad!). Maybe another good conversation with a good friend, like I had with my friend Barbara yesterday. Maybe Lahaina's. One thing is for sure, I will get there. I have no doubt that on Monday, June 7, I will be ready for my next therapy that will finally kick cancer to the curb for good.

Tomorrow, Work; Thursday, Hair?

2010-05-18T07:47:00.000-07:00

I cried. I sat with Steve and cried like I had not cried in a long time. My emotions are usually in check, as I am quick to not give power to negativity that may result otherwise. BUT on Sunday, when I saw the 5 o'clock shadow on my head and felt stubble where there was none just two days before, I cried. My hair is finally starting to grow back. Steve says that my hairline resembles that of Captain Picard, Star Trek, The Next Generation. I am hoping my hair resembles that of G.I. Jane towards the end of this week or next. Either way, I am just happy to have something more than a little stubble on the very top of my head. For a while, I thought it would grow back in the shape of a mohawk because my head was so smooth on both sides. Now, I actually have a hairline that is filling in every day.

My scar is healing nicely. However, if I have spoken with you recently, you know that I am a little "over" having one breast, a six inch scar, no feeling and extra skin across my chest to about half way down my upper arm, no eyelashes on my left eye, a very few on my right, eyebrows that are just barely hanging on and no hair. No matter how great anyone tells me I look, the combination just is wearing on me a bit. That and I am tired of my head and neck being cold. I think this is why I was particularly emotional on Sunday, or maybe it was because I had not had a good cry in a while. Either way, it was a moment I will never forget.

Tomorrow, I will dawn my wig and start working again. I have an early morning appointment at Rady Children's Occupational Health. Assuming they grant me clearance to return to work, I have a 9:00 meeting with my supervisor. We have already briefly spoken about a couple of projects where I will need to focus my energy. I am going to work Monday, Wednesday, Friday for now, full days, which I imagine I will continue through the duration of my radiation treatments. Am I ready? Sure. I know any day I start back will be exhausting for me. I will miss being "around" for my kids and Steve. However, routine is good and I am needed at work. That and I have a new found focus now that I am cancer free. My health and my family are at the forefront, but I have more energy and brain power that I have had in a long time.

On another note, Steve and I meet with my radiation oncologist on Thursday. I am guessing I could start radiation as early as next week. I am not terribly thrilled but in researching my options, I am about 99% sure that having radiation provides the best chance at keeping cancer at bay (more to follow after Thursday's appointment).

In the interim, I am just going to focus on making today the most relaxing day possible. I started a new book last night. I am thinking that reading and pajamas seem to be the order for the day. Hmmmm, I think I need more coffee......

Dance Like No One's Watching

2010-05-10T19:19:00.001-07:00

I have been feeling good. Actually feeling really good, until I tried to dig through and lift several boxes today in my garage. I was searching for a scrapbook for my daughter. I used to sell Creative Memories (scrapbooking supplies). After Harrison was born, I could not keep up with my CM customers or even scrapping my own books. That was 10 years ago. I have held on to ALL the materials and am now getting back into it...with Madison in tow. She loves it. She has a knack for it. (Shhh! Harrison does too.) Today, Madison graduated from her "Hello Kitty" kiddie album to a 12x12 scrapbook. If you have seen my garage, you know that my plight to find my CM materials was not an easy one. To the detriment of my right arm, I persevered, though. Thankfully, the swelling has gone down mostly. I guess I just needed the reminder that NO, I am not completely healed.

Still sore, I was determined to take Cooper for a walk, this evening. I was not going to let a little swelling get me down. (My remaining lymph nodes can get over it.) When I got back from my walk, I found a loose piece of paper lying amongst my scrapbooking materials. It is only page "one of two" and I have no way to easily reference its origin. Still, I wanted to share it on my blog. I am sure its title is familiar to to many of you. It is a perspective I share, now more than ever. It is funny to think that I printed it off of the Internet so long ago. Enjoy!

Dance Like No One's Watching

We convince ourselves that life will be better after we get married, have a baby, then another. Then we are frustrated that the kids aren't old enough and we'll be more content when they are. After that, we're frustrated that we have a teenager to deal with, we will certainly be happy when they are out of that stage.

We tell ourselves that our life will be complete when our spouse gets his or her act together, when we get a nicer car, are able to go on a nice vacation, when we retire. The truth is there's no time to be happier than right now. If not now, when?

Your life will always be filled with challenges. It's best to admit this to yourself and decide to be happy now anyway. One of my favorite quotes comes from Alfred D. Souza.

He said, "For a long time it had seemed to me that life was about to begin - real life. But there was always some obstacle in the way, something to be gotten through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life."

This perspective has helped me to see that there is no way to happiness. Happiness is the way, so, treasure every moment that you have. And treasure it more because you shared it with someone special, special enough to spend your time...and remember that time waits for no one.

So stop waiting until you finish school, until you go back to school, until you lose ten pounds, until you gain ten pounds, until you have kids, until your kids leave the house, until you start work, until you retire, until you get married, until you get divorced, until Friday night, until Sunday morning, until your car or home is paid off, until spring, until summer, until fall, until winter, until you are off welfare, until the first or the fifteenth, until your song comes on, until you have had a drink, until you have sobered up, until you die, until you are born again to decide that there is no better time than right now to be happy....Happiness is a journey, not a destination.

I Cleaned My Fire Place Today

2010-05-05T18:30:00.001-07:00

I cleaned my fireplace today. I kind of cleaned it anyway. I am no chimney sweep, after all. This is not a task I typically consider completing. In fact, I do not think I have ever considered cleaning it. However, yesterday, I cleared the boxes from the hearth and sitting in my usual spot on the couch this morning, I could not keep my eyes off the dusty grate in the fireplace. So, I cleaned it.

Before yesterday and the result of our remodel, all pictures not in photo boxes or rodent-proof containers were stacked on my fireplace hearth instead of the garage. The unorganized piles were an eyesore. BUT as I tirelessly sorted...oh, the memories I found scattered throughout: precious family memories; evidence of current and past friendships; the birth of both of my children; birthday parties; our wedding; college; vacations; and pictures of people who have left us long ago. All day long, the project kept my mind on happier times and off my impending oncology appointment.

Today, Steve and I visited my oncologist, Dr. Sweet. Much to our dismay, he did not give us a definitive answer on if I should pursue radiation therapy. He did say that my outcomes from my chemo/surgery combo are excellent. We also discussed some of the recent published studies that say cancer patients who suffered from my type of cancer have a better survivor rate if they have radiation. Thanks to Kelly I already knew of these studies. And really, based on what Kelly already told me, I knew that Dr. Sweet would refer me to a radiation therapist. That is exactly what he did.

Dr. Deree (my surgeon) says there is nothing left to radiate. Steve and I are not sure where we stand. Part of me does not want to put my body through any more harsh treatments. I feel like maybe I should take it as a sign that I came through chemo and my modified radical mastectomy strong and that maybe this strategy is not the best idea. I still have another mastectomy and reconstruction to tackle.

Another part of me wants to do whatever I possibly can to keep cancer at bay for as long as possible. However, as cancer is a different sort of animal, whose to say anything really keeps it at bay. I know diet and exercise are a given, but who is to say that radiation is going to kill the only abnormal cell in my body? As Steve said, any cell can mutate at any point.

Either way, I am confident that the radiation therapist will be brilliant and Steve and I will make a very informed decision. I bet I even end up having radiation.

As for an update on my healing process from surgery, my scar looks incredible. It is about six inches long and despite looking a little haggard on each end, it barely looks like anything. I am still bandaged where my drains lived for 10 days. I also still am not using my right side for anything strenuous, but I am walking Cooper, our 80-lb golden retriever, for 15 minutes each day. My pain has subsided substantially.

So what now? Until we decide on radiation, I am going to enjoy my days of leisure at home. I am going to enjoy my newly decorated house. I am going to continue going through pictures and am even going to take up scrapbooking again. Most importantly, I am going to make new memories with Steve, my family, the kids and friends. Isn't that what it is all about?

Cloud Nine

2010-04-27T10:01:00.000-07:00

"Walking on cloud nine" - that is what it felt like as my mom and I walked out of Kaiser General Surgery yesterday. Last week, I found out that the cancer as diagnosed last November, is gone. Yesterday, eleven days after surgery, the bandages came off and the drainage tubes came out of my right side.

I did not expect this feeling after I saw my scar for the first time. However, there was so much more to this appointment than its meager purpose. Do not get me wrong, nothing about having the drains removed felt meager. It hurt - at least for a few seconds and in my entry yesterday, I described my anguish over the drains. Still, I think it was the combination having them taken out, seeing the scar and the recommendation of my surgeon that helped me sky rocket to "cloud nine".

The recommendation: No radiation. Because, we chose the mastectomy, and all of my tests came back clean, Dr. Deree feels like there is nothing to radiate. I am comfortable with that - so is Steve - let's see if Dr. Sweet (Oncology) agrees.

The scar: This was the scary part. At first I told her that I did not want to see it, but when my mom peeked first and said it looked good, I got a little braver. It is about nine inches long, running horizontally. It looks really clean. Dr. Deree said that I am a "super fast" healer, but the surprised look on her face said it all. I have been taking 1000 mg of vitamin C at dinner every night, as recommended by one of Kaiser's surgical nurses. Since healing occurs while you sleep, this is what must have done the trick. (This is a tip that will carry through to all types of injuries, surgeries or illnesses. I am assuming this will even help with the common cold.)

The drains: There is not much more I can say about these without my repeating myself, outside of AAAAAWWWWWW! Relief! Though, I took extra pain meds last night and I am having a pajama day today, as I now am nursing those wounds.

Since released from the hospital after my surgery, I had always planned on my mom taking me to this appointment. I told her it was a good one for her to take me to. I believed it but never though about why. Last night, it occurred to me. My mom has been to almost all of the chemo sessions with me. More importantly, she was there during my second meeting with Dr. Deree, where Dr. Deree unexpectedly recommended my mastectomy. Mom and I both cried - it was a very emotional moment. It seemed fitting that my mom was there as Dr. Deree removed the bandages on my cancer-free body. Having my mom there made me braver and together, we completed the cycle.

As I looked at the scar again last night, I felt strong. In the words of my friend, Jan, it is a badge of honor that will always remind of my journey. I do not know what lies ahead for me. I still have some recovering to do, and I will find out next steps when I meet with Dr. Sweet on May 5. Until then, like I said in my last blog entry, the rest is up to me!

Comfort

2010-04-26T08:38:00.000-07:00

I woke up comfortable this morning. Honestly, it was an odd feeling, dramatic as it may sound. Somewhere in the middle of the night, I flipped on the opposite side from which I am used to sleeping and it must have done the trick. I laid in bed as long as I possibly could. BUT...in the end, I got up to send the kids off to school. It was short lived, but a good reminder of what is to come.

The tubes that remain in my side and the drains to which they are attached make me look pregnant. I try to cleverly disguise this with scarves and blousy tops. It is still annoying. Still, more bothersome is the pain that falls somewhere in between a dull ache and constant itch where the tubes are attached to my body. This is complicated by the part of my arm where they rub (which is part way numb) seeming consistently irritated (which is especially a strange feeling because it is part way numb). With help from Vicodin and Ibuprofen, physical comfort comes and goes. However, looking at the bright side of it all (my friend Shanna would be proud!), I find comfort in a hundred other little things. Below are some recent examples:

-a good laugh with Steve last night when I came out of the bathroom looking like a Christmas elf;
-a movie with my parents yesterday, "Date Night";
-a hysterical laugh with them when I realized that the cow my brother and Kelly were buying with a few friends was not for milk. Gotta love my chemo brain;
-the magical moment when brownies anonymously showed up on my front porch just as I was craving chocolate!;
-a beautiful, sunny Friday afternoon at Lahaina's in Pacific Beach with friends;
-comic strips sent anonymously to me in the mail - they made me giggle!;
-random groceries left anonymously on my front porch;
-dinners provided by families of San Diego United Futbol Club;
-a friend making our COSTCO trip for us last week and cleaning out our freezer to put our groceries away;
-home-made pickles;
-my dog ever so patiently sitting by my side every day;
-starting to get my concentration skills back so I can read book two of The Lightning Thief series. Harrison is anxiously awaiting my opinion, which is the real reason that I am reading the series at all;
-a walk with my family after dinner Saturday night; and,
-all your thoughtful, emails, texts, phone calls and Facebook posts!

As I sit here and type this post, I received a phone call from my surgeon. She is taking my tubes this afternoon. Yay! She is also removing my bandages from my mastectomy too. Not so, yay. I am not sure that I am ready. However, I believe I can endure anything to rid myself of my "drain friends" as I have been calling them. Seeing my scar is just one more check off my list.

Last week, I saw Melissa Etheridge interviewed on OPRAH. She is also a breast cancer survivor. Her new album, Fearless Love, is being released tomorrow and in the title song, she sings of living life "fearlessly". Among other points, in her interview with Oprah, she explains that instead of questioning why she got her cancer or "why me?", she views it as a wake up call that her body was not in balance. Further, she has no "bucket list" as she feels like she should live every day as if it were her last.

I was inspired. As I think about her words in context of my journey, I think that if aspire to live "fearlessly", internal comfort will follow, as well as a whole lot of fun. The rest will be up to me.

Ode to a Wonderful Man

2010-04-22T09:27:00.000-07:00

Steve had to give me a shower last night. There was nothing sexy about it. Just a man helping his wife, taking care of her "for better or for worse".

My having breast cancer definitely falls under this vow. Steve has a big job. He has to be my confidante, best friend, punching bag, nurse, caretaker of the kids, caretaker of me, runner of our household, cook, dishwasher, homework police, taxi cab, accountant, coach and many other roles along the way. Everyday, I always try to think of something I can get done or arrange to get done for us, in order to help Steve. For instance, yesterday, Evelyn went to the COSTCO for us (Thank you, Ev!)- something that we had been trying to squeeze in all weekend - and my mom went to the grocery store for milk and bananas and picked up Maddie at school (Thanks, Mom!). I looked at the kids' homework and asked Harrison to take Cooper for a short walk. BUT...this is about all I accomplished.

What did this leave for Steve? Since I was in so much pain yesterday (a story in itself), I hardly helped get the kids ready for school in the morning. After work, Steve came home, prepared dinner (dinners are being provided for us, but getting it on the table is a different story), did dishes, helped with homework and put the kids in bed and that is even simplifying his task list a bit. I did chime in here and there (I am a great supervisor!)...but really, Steve ran the household. This was followed by a providing a late-night shower for his wife, running out to get cash for Gaby (who is here cleaning our house today) and a few other menial chores. Last night, he did not grade papers. Usually, he throws in some of that too.

I think this is the same type of stuff we all do everyday. Nothing too extraordinary. However, in order to pay tribute to the wonderful man that is my husband, I wanted to describe how his day is filled. And this is only what I see after he gets home.

When speaking with my Uncle Bruce last week, he advised that my Aunt Debbie (one of the kindest ladies whoever walked this Earth - may she rest in peace) always healed faster when she had no responsibility. I know that Steve is trying to make this a reality for me. As I get stronger, I will do more. In fact, I always try to do too much too soon. It is kind of my "MO". In the end, I am just extremely blessed to be married to a wonderful man who has a stronger will than I do.

Cancer Free!

2010-04-20T07:44:00.000-07:00

My recovery is going. I move around fairly decently and have unexpected flexibility on my right side. I made it to Harrison's baseball and Maddie's softball games on Saturday. Yesterday, I went to see Maddie compete at Green Elementary's Junior Olympics. Drains in tow for all. (I look a little bit pregnant - who'd thought they would attach these drains so they would hang across my belly?) My brother, Darin and sister-in-law, Kelly flew in from Portland on Wednesday night. It has been very comforting for me to have them here and my parents around as well. All have been fabulous. Kelly says my incision looks great. I miss her already and she only left yesterday. Darin leaves tonight. Thank you all for the phone calls and visits. They really brighten my day!

Today, the house is quiet. I am sitting by our front window. Regardless of the clutter remaining from our remodel, the new design of my front room looks beautiful in the morning light, as I sit on my new comfy couch. I am actually sitting in the space next to the window which our dog Cooper, considers his spot, to my parents' chagrin. (I can see why he likes it - the fresh air and view out the window is outstanding.) I have my coffee and both phones should someone call. I am at peace.

The phones are amazingly silent. I mean this in a good way. Yesterday, I received a fantastic report from my surgeon - all pathology reports from my mastectomy returned clean. The phone did not stop ringing for the rest of the day. When I heard the results, the first thing I wanted to do was tell the world, hug someone, jump up and down and scream. I was by myself in the house - but I made a fair attempt.

Before my mastectomy, I knew chemo had been approximately 75% effective. After the surgery, I knew that three of the "seven or more" lymph nodes that looked concerning in my PET scan (November, 2009) looked unhealthy. While I did not dwell on the pathology report too much, I knew it would be the determining factor in what happens next. I also knew that know matter which scans are performed, physicians cannot really "stage" cancer until they perform surgery and receive the pathology report. So, even though my surgery went well, the skeptical side of me could not celebrate the milestone until the pathology report returned.

That being said, I was not prepared for my emotions yesterday. I compare it to the emotions I felt when I found out that my second child was going to be a baby girl. Having my baby boy (Harrison) in 2000, I learned that while I am a "girly girl", I really love everything about my son. Boy clothes are cool. Boy toys are cool. Harrison was an easy baby. When I got pregnant for the second time, I had resolved myself to the fact that we would inevitably have another boy because Steve was essentially the determining factor in the sex of our child and we have five nephews and one niece on Steve's side of the family. When I found out that we were having our Madison, uncontrollable happy tears streamed down my face and I felt an overwhelming sense of emotion that I never knew was there. I guess I wanted a girl more than I knew.

This is exactly how I felt yesterday, after speaking with my surgeon. I never considered the fact that I could be "cancer free". I was OK with that. I knew radiation and time would take care of any residual micro-disease and honestly, I was really more scared that they would find some lurking tumor that did not show up in scans. Crazier things have happened.

Now, I can focus on healing and prevention. I will likely still have radiation. I will also have my second mastectomy at the time of reconstruction, some time this fall, I presume. The reality is that the type of cancer that I just fought (and beat) is still a puzzle to doctors - they do not know its cause, unlike other forms of breast cancer. This makes it a bit more of a threat for a repeat visit in the next 2.5 years. At the same time, if I can keep it at bay for the next 2.5 years, then it is unlikely to return. At least, this is the way I understand it. Either way, I still have some work to do. A lot of it also involves changing my diet and adding supplements geared towards cancer prevention. I can do that. Easy, peasy.

For now, I just want to relish in the the words "cancer free". Wow. In the words of my good friend Doug, "That is something."

Home Again, Home Again

2010-04-15T15:12:00.000-07:00

This is Steve again - Marsi stayed the night at the hospital, which was well needed due to the nausea and pain she was in. They took care of her all night and the surgeon saw her in the morning, clearing her to go home. All did go well and Marsi is recovering perfectly. I picked her up at 10AM, after seeing H run the 880 at school for his Jr Olympics and brought her home. She is too tired to write, concentrate or post anything on Facebook yet, so I am continuing my duties. She is in good spirits and continues to amaze me with her strength and positive attitude. The surgeon did indicate that she feels she got all the cancer due to the tumor being located more forward (as opposed to closer to the chest wall) and shrinking much as it did during chemo. Also, she was encouraged by the fact the lymph nodes looked surprisingly unaffected. We have to wait about a week and the surgeon will call back with the pathology results. Then, we will know for sure if the cancer has spread or not, which will determine our next step on this long journey. Until then keep all your prayers and positive energy pointed our way. Marsi still has a long road ahead of her, but now we know, without a doubt, that my beautiful warrior WILL be a survivor.

Nesting Away

2010-04-11T17:52:00.000-07:00

I am nesting. I find it incredibly exhausting yet at the same time it calms my nerves. I have especially been on edge for the last 72-hours or so, with each hour bringing me closer to being cancer free.

Surgery is Wednesday. I am checking in at 12:30; "OR time" is scheduled for 2:30-4:30; and, then, I should be in recovery until about 6:30 p.m. I had a call from my surgeon yesterday, and then today, a woman from Kaiser Admitting called me to begin their process.

With the surgery and its preparations on the forefront of my mind, I am reminded of when I was pregnant and the "nesting" phenomenon that almost all pregnant women experience. The garage sale we had planned motivated me earlier this week to clean out several drawers in the kitchen. The fact that there were very few customers in the early hours of the garage sale motivated me to keep going. My friend had called the day before and offered to help with the garage sale. Since, Steve had it under control, we charged ahead with organizing my Tupperware drawer. (Thanks, Lisa!) I did not stop there. One thing lead to another and I have been cleaning and organizing my house for the past 12 hours. Yes, I am definitely nesting.

However, tired as I am, as I sit down to write, I realize that I am not overly emotional, I am not coughing and all in all, I feel pretty good. Let's just hope that the experiment I threw in the oven to serve for dinner tonight (we are low on groceries) will not cause too much of a commotion and we will be all set!

Cancer Be Gone!

2010-04-05T21:05:00.000-07:00

I have writer's block. I think it is due to the fact that I am having a hard time putting into words how I am feeling about my mastectomy, to occur next week (April 14).

I have started to prepare. However, I find myself focusing more on family activities and obligations rather than my feelings about the surgery. Maybe this is a good thing.

Typically, this blog has helped me express these feelings. Writing is my outlet. What I am finding is that my feelings about my mastectomy are so personal that I cannot put them into words. Maybe this is a good thing as well.

What I can say is that I have had a wonderful break from cancer treatments. Finishing my sixth chemotherapy treatment was a major accomplishment. Steve and I celebrated at Disneyland, while the kids were visiting Darin and Kelly in Portland.

Recovery from the sixth treatment is still in process. My taste buds are still off and my mouth is still healing from the dozen or more mouth sores that got me in the end. (A very common side affect of Adriamycin, I successfully avoided getting mouth sores through treatment five thanks to my vitamin regimen of lysine and folic acid.) I am still tired and a little bit anemic. Naps are helpful.

Tomorrow, I will complete the pre-testing for surgery, which is mainly blood work and an EKG. Monday, we will meet with a plastic surgeon. Other than that, I am waiting for an exact surgery time. I should know early next week. I believe the surgery will occur on Wednesday afternoon. I will stay the night and return home on Thursday.

I have heard all kinds of accounts as to how easy and hard the surgery has been for others. I have heard everything - not all are completely relevant due to when surgeries were performed and/or the fact that they were not all radical mastectomies, meaning there was no lymph node involvement. People mean well, however. So I do not mind hearing the stories, I just can't say that they do much to alleviate my concerns.

Mostly, I am worried about the emotions involved in losing such a personal part of my body. I am also worried I could end up with lyphedema in my right arm when they take out my lymph nodes, though I know chances are slight. I am worried that the pathology report after the surgery will determine I need more chemo. I am worried that my body is a bit weak and this weakness may delay my recovery. I am worried about losing feeling in my arm once when they sacrifice the nerve necessary to remove my lymph nodes. This list could go on and on, but this is where my writer's block impedes my ability to share. It is just too personal.

Despite my concerns, last night, it occurred to me that I ought to focus on the fact that they are removing my cancer next week. After watching Crazy Sexy Cancer this weekend (see previous post), I appreciate that they can remove my tumors and I am hopeful that the only existing cancer is that which they have seen in scans. I am more than ready to give these tumors the boot and get on with my life. Can I keep my focus here? Maybe not, but I am sure going to try.

Crazy Sexy Cancer - A Movie that Inspires

2010-04-02T19:37:00.000-07:00

Steve and I watched the movie today, Crazy Sexy Cancer, a documentary by Kris Carr for TLC. Kris is a survivor of cancer of the vascular system. It was really well done. Steve thought it was really positive and hopeful - and for me, that says it all. If you would like to see clips and Oprah's segment as presented by Dr. Oz, click here. I highly recommend it.

I'm Going to Disneyland!

2010-03-24T21:15:00.000-07:00

Steve and I met with my surgeon yesterday, Dr. Jessica Deree. After much discussion and deliberation, we decided that I would have a single mastectomy as well as removal of my lymph nodes on my right side. The surgery is scheduled for April 14. During the appointment, as previously reported, we learned that my cancer is approximately 25% of its original size. I left Kaiser walking a little lighter and feeling like a giant weight had been lifted off of my shoulders. It was a great day.

I have always liked Dr. Deree, but as we were discussing the possibility of a bilateral mastectomy, I had requested and received a second opinion. We liked him too (Dr. Ditmars). I also talked quite a bit to my American Cancer Society Reach Counselor and also learned a great deal through the research of Kelly and Darin. (Sorry for kind of late night call, Kelly!) We were prepared.

Still, as Dr. Deree explained her recommendations, I began to get scared. It was real. However, by the end of our discussion, I was even more convinced that Dr. Deree was the right surgeon for me. Her recommendations seemed to be truly in my best interest. She did not tell me her plan; she presented options. Good options.

It is important to note that while my tumor has shrunk approximately 75%, it is currently disk-shaped and flat. Since the tumor was initially the size of a golf ball and is located at the very top of my breast, it is easy to envision why a lumpectomy or a quadrantectomy (basically a larger lumpectomy) is not a desirable option. Plus, neither of these options ensures that the maximum amount of the cancer and/or micro-disease can be removed.

So my best option is mastectomy. Because I am a candidate for radiation post-surgery, re-construction cannot occur at the time of surgery. Instead, the tentative plan is to have re-construction once I am healed from radiation. At this time, they will remove my other breast and re-construct both during the same surgery. Overall, this is a much less painful/traumatic surgery for me now and ensures that I will be the happiest with the results of reconstruction when all is said and done. The whole process will take up to year.

Dr. Deree also referred me to plastic surgery for a consultation. While the consultation is not really necessary before surgery, from what I have learned, I would feel better about having it. Dr. Deree is trying to make this happen for us.

What now? We are going to Disneyland! Steve is on Spring Break and tomorrow, the kids are flying as "unaccompanied minors" to see Darin and Kelly in Portland for the weekend. On Friday, Steve and I are heading out! I am really excited to celebrate this milestone at the Happiest Place on Earth...because really, I am the happiest I have been in a long time.

Good News!

2010-03-23T23:32:00.000-07:00

Good News! We saw the surgeon today and she told us that my tumor is approximately 25% of its original size! More news on surgery as soon as we have a date schedule; and I will more than likely also need radiation. I just could not wait to share the good news on my blog.

Have a great week, all!