Saturday, July 12, 2014

Clinical trial update and Gratitude

Cycle 4, MLN0128

 Every four weeks is the start if a new cycle in the clinical trial. On Day 1 of each cycle, I see either my oncologist or the nurse practitioner (NP). I have lasted through the first three cycles which required multiple visits for EKGs and PK blood draws that measure how long the drug stays in my system. From now until the drug stops working, I only need to go once every four weeks. However, I still have to prick my finger to measure my blood glucose every day.

I saw the NP and had the usual blood draws on Day 1, Cycle 4. I had lost 8 lbs. since my last visit three weeks prior. This weight loss was alarming as that translates to about 7% of my total body weight. I have had out-of-control diarrhea for a week, ever since I got back from my convention. I needed drugs to stop it. Now most anti-diarrhea medications are anti-cholinergic which I cannot take.  I have a severe reaction to the smallest amount that results in an ER visit.  The diarrhea was now Grade 3. That means that the drug protocol requires that the patient should take a lower dose of the clinical trial drug. However, after much discussion, the doctors decided that the reason the diarrhea was grade 3 was not due to the drug but my inability to take over-the-counter medication to combat the diarrhea. So I skipped a day of the drug and a gastroenterologist was consulted. Tincture of opium was prescribed. I thought the problem was now solved and I loved the romance of taking an ancient drug because I could not tolerate the new ones. There was something so Sherlock Holmes about it. However, the situation no longer seemed romantic when I tried to get the prescription filled at the usual pharmacies, and was told it would take two weeks. I called the hospital and they had one bottle that they were not permitted to place on hold. I had to drive back immediately and pick it up.

My husband rearranged his schedule and drove me to get it. By this time, he felt that I had had enough of trying to do it all. I finally had the opium in hand at 3 PM.  I took the first dose in the car. By then I was in serious trouble, feeling weak and dizzy. The opium tasted terrible. It comes in a liquid and it tastes like engine cleaning fluid smells. However, the effect was instantaneous.  The cramps stopped and within 30 minutes I started to get that far-away dreamy feeling that you get just before you go to sleep. My husband put on a Beatles CD and life felt very very good.

I went back to the hospital next day to get the all clear for the trial drug. The diarrhea was under control and I had put on 2 lbs. now that I wasn’t quite so dehydrated.

I am taking the opium twice or three times a day and it works wonderfully. Unless there are any nasty surprises, I should be all set for the next month and the two conventions that I am going to.

 Gratitude for those who care

Although I feel immensely sad at prematurely leaving those who love and need me, there is a special heartbreak in thinking about my darling husband living another 20 – 30 years without me. I am profoundly fortunate to have been deeply and truly loved by one man for most of my life. In May 2013, he was the one with me who heard the words, “Lulu’s cancer is back” and the unspoken, “and she will need you to be there for her.” As I rocked on the floor in grief for my suddenly clipped life, he held me. I could feel the pain coursing through his body, but he never cracked.
I met John at the college fencing club when I was 17 and he was 20. We fenced like we lived. I was impulsive and reckless and he was controlled and precise.  He was good and I was terrible. I did everything with whole-hearted abandon and he was thoughtful and steady.
We were typical college students. My skirts were too short and his hair was too long. I protested while he worked. He brought me joy. I am laughing in all the photos with him. We grew up together and planned to grow old together. We embraced our differences and molded each other. I read everything. He read the sport and business section of the paper. He knew a lot about music. I knew a lot about the Beatles. I was a vegetarian. He was not. He knew how to deal with difficult people I had poor fool-tolerance. He had a perfect sense of direction. I was a spatial idiot.
I qualified as a nurse and he as an accountant. He did a master’s in business and I did one in education. He did another master’s and PhD in accounting and I did a master’s and PhD in psychology. In between, we married, homeschooled our four children, and moved countries three times.
Through everything, John has loved me unconditionally. He puts me together when I sabotage myself. He is a useless critic, praising everything I do. He is not sentimental but gives me cards that are deeply romantic. On his list of contacts, I am Darling. He is not adventurous but inevitably agrees to the adventures I suggest. He hates cherries and does not eat chocolate (go figure), but cannot walk past them without buying them for me.

He is still stoic and I am still emotional. When his brother died, I screamed and sobbed while he held me and let me vent our pain. Then I made tea and he made funeral plans. He watches sport on TV and I have no idea whether it is a game with runs or goals. He still reads the sport and business section of the paper and I read the world news and comics.
He stops to pick up pennies. He is quiet and clever. He plays Sudoku. He has a few beers every night. He hates to be driven. He has never been lost, but writes out the best directions. We run road races together. He races ahead to the finish then he turns back to run with me at my pace. He does the laundry and the grocery shopping. He mocks me for being a bleeding heart when I give away my last dollar and then good naturedly lets me raid his wallet. His students love him.
We still go for long brisk walks together. He walks on the outside, protecting me from wildly out-of-control cars or pillaging pirates but he is helpless against the marauding cancer cells that are causing havoc in our lives.

It isn’t supposed to be like this. I am supposed to be taking care of him, making up for the lifetime he has spent taking care of me. Instead, he drives me when he can, he comforts me, he gets my prescriptions filled and he makes my life the best it can be. Every day he does a thousand things that tell me how much he cares. If one of the ways we can measure the worth of a man is in how he cares for his wife as she lives out her last, my husband has won all the awards.
I have a pendant that has a quote from Rowling’s Harry Potter. On the front it reads, “After all this time” and on the back is “Always.”  
John and I have no beliefs in an afterlife, but when I wake at 2 AM to the helplessness of a disease that is spinning out of control, I can hear his steady breathing and I reach out and touch him. After all this time, he is my always.

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