Wednesday, December 21, 2011

Keep On Keeping On: Decorating Cookies for Santa

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.
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Tuesday, December 20, 2011

Rob Cares Guest Post

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.

Saturday, December 17, 2011

Cancer Has Progressed

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.

Friday, December 16, 2011

Kindness Made My Day

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.

Wednesday, December 7, 2011

Oh, Christmas Tree

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.

Tuesday, December 6, 2011

A Walk Up Hill

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.

Monday, December 5, 2011

A New Dawn

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?

Thursday, December 1, 2011

Come Visit Me

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.

Saturday, November 26, 2011

Pure Heaven

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.

Monday, November 21, 2011

Xeloda is Not Finished With Me Yet

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.

Thursday, November 17, 2011

Hand Foot Syndrome

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.

Wednesday, November 16, 2011

Ode to Kaiser Permanente

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.

Sunday, November 13, 2011

Cancerversary: November 12, Two Years

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.

Saturday, November 12, 2011

Weekly Update

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.

Sunday, November 6, 2011

For Your Cancer Survivor, Be a Part of It

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

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.

Friday, November 4, 2011

Port Placement and Oncology Visit

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.

Monday, October 31, 2011

Dizziness

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.

Sunday, October 30, 2011

Feeling Normal

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.

Thursday, October 27, 2011

Feeling Better

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.

Wednesday, October 26, 2011

Counting Hours

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.

Wednesday, October 19, 2011

Chemo Re-Started

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.

Monday, October 17, 2011

My First Public Speech about Me

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.
  1.  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.
  2. 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.
  3. 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.

Saturday, October 15, 2011

Cooper

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.


Thursday, October 6, 2011

R.I.P Steve Jobs

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......

Tuesday, October 4, 2011

Digging Deep: Disappointing Scan Results

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.

Monday, October 3, 2011

Waiting for Test Results

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.

Sunday, October 2, 2011

A Chemo Tired

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.

Wednesday, September 28, 2011

Make Lemonade

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.

Monday, September 26, 2011

Days and Hours until CT Scan

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.

Sunday, September 25, 2011

Quick Post for an Inspired Day

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.

Sunday, September 18, 2011

He Sleeps

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.

Tuesday, September 13, 2011

Broken Down, Cancer Treatment is Not so Scary

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.

Sunday, September 4, 2011

Thoughts of Swimming

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.

Saturday, August 27, 2011

Chemo Calls My Pillow

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.

Tuesday, August 23, 2011

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

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!