Saturday, November 26, 2011

Pure Heaven

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 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 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 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

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.