The two medicines of the protocol I have been on, and now have a break from, are AVAstin and TARceva. Ava-tar. There are a small number of us on the protocol at NIH, maybe 20 patients, informally called "Avatars" One of them died this week.
As I am on break from Avatar and considering very limited other options, hearing that news magnified my already roiling waves of emotion. Turns out that my own response to the Avatar protocol is sketchy - some shrinkage and some growth and some spread. WTF do I do now?
Jacki and I were in bed a couple nights ago nearly asleep. My body started jerking as tears insisted on coming out. The jerks awoke Jacki and she asked what's wrong. "This is so hard!" was all I could say and it was enough. Now we both were crying in each others arms because this is so hard for both of us.
All but one of my current options offer slowing or maybe stopping the growth of cancer in my body. It is now in my kidney, my lungs, and growing into my bones. I went off the Avatar protocol in part because the price extracted by side effects became greater than the decreasing benefit of the medicine. Now I look at a couple other drugs that might slow or maybe even stop my tumor spread and growth. They both are extremely expensive. I go on Medicare 1st of July, so maybe then the cost could be covered. I will not break our bank.
"All but one of my options . . .". The spouse/caretaker of the woman who died called it "She became an angel last night." I am not ready to stop seeking a solution for my disease. I will keep "fighting". And, I dream at night of becoming an angel.
This is so hard!
Bill
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Oh Bill, my heart goes out to you and your wife. You have said it so well. this is so hard! I will keep you in my prayers. I wish there were more promising options. I wish nobody had to go through this. I wish no one would have to helplessly watch someone go through this.
ReplyDeleteIt reminds me of my own Grandparents. My Grandma had been receiving treatment for bladder cancer. Then they tested to see how successful they had been. The news was not good. Spread to the liver and pancreas. That night my Grandpa died of a heart attack. He couldn't face losing the one he had loved over 50 years.
It sure is hard to stay positive in the face of such things. I would like to share a Psalm I read the other day.
Psalm 56:13 For Thou hast delivered my soul from death,
Indeed my feet from stumbling, So that I may walk before God
In the light of the living.
God bless you Bill. I'm praying.
I am surely not alone in feeling a tug on my heart from reading your blog and feeling some of your pain. I know that my pain in this is but a drop in the bucket of what you are going through. I am so thankful that you have Jacki and Kate especially at your side. And you have 2 feet that you are obviously striving hard to keeping placing one in front of the other. Keep doing this. Surround yourself with people who love you. Take from them what they offer to give. God bless you, brother. I, too, am praying.
ReplyDeleteDitto to Shane's reply. SLY, Gina
ReplyDeletethank you
ReplyDeleteWow, that naked truth. Damn, what can I do? I wish I could take this away, even for the day.
ReplyDeleteI love you and Jackie.
L
it becomes a choice in quality of life with these sometimes traumatic treatments... best of luck in whatever you decide!
ReplyDeleteBill, I've written to you once before. I have been following this blog on the advice of one of your relatives in Tucson. I admire your bluntness about your medical care, the pharmacologics, and your daily routines and irritants. I myself am 1 year post liver transplant (Hep C), and due to many post op complications, and a new round of Hep C on my NEW liver, I have been on various chemotherapy treatments, along with all the other drugs that maintain my "balance". Unfortunately, like you, I have lost my balance, I have about 6 good hours a day (when I'm not sleeping), and I am constantly TIRED. However, you and I have both learned something very valuable (that most people will never fully appreciate): The love of family, and trust in God makes us able to withstand just about anything thrown our way. I hurt for you, and your trials, but I also rejoice for you to have the family support and love that you have, and your ability to see good in spite of it all. Keep fighting my friend. I am fighting right along with you... from Texas...Mike
ReplyDelete