It's been an exhausting 12 hour day at the NIH. I will send more details later. This was a very sobering, late day, meeting with 6 doctors and alot of testing. Dr Marti was spokesperson and told me that I was in end stage disease. That is difficult to hear and receive.
My counts were too poor to qualify for either the Revlimid or ABT 263 trials. So those doors (especially the Revlimid trial) have been closed for me. The only option they are suggesting is transplant. (You know my feelings there - however, I consented to begin the donor search tomorrow. It will be valuable information to receive - if there is no 10/10 match then that door will also close for me.)
We return at 7 AM tomorrow - another full day - bone marrow biopsy at 8 and again, nonstop testing and consults all day. I must return to my faith and know that God is the giver and the taker of life. He has ordained my number of days for me before I was born. Yet, it was heartbreaking to hear spoken what I probably already knew somewhere in my heart.
I brought up the prospect of Low Dose Rituxan at home. I will pursue that more tomorrow as I know I need someone to support it and who will instruct the local oncologist as to how most safely administer that. It remains a consideration in my playbook.
Hemoglobin was 8.8 and that is approaching transfusion level. No one could believe I walked nearly 4 miles in DC yesterday afternoon with counts that low. I am once agin neutropenic - I was going to take Neupogen tonight as I brought a vial, but I don't believe the pain I'm in tonight combined with Neupogen bone pain will be a good combination for tomorrow and our trip home. So I may delay that injection.
I am amazed at the number of people I still know here (my last trip was in 2002). To have access to hospital care like this, on a local basis, would be amazing. Before my CT they came and wrapped me up in a warmed blanket. It was so comforting.
Lymphadenopathy was minimal but you know the spleen's story. They said splenectomy will pose about the same risks as other treatments - substantial. So their logic is if I am going to risk my life, I might as well risk it going for a transplant.It was so good to see Dr Marti - he has cared for me for over 10 years and is a wonderful physician. He is coming to see me again tomorrow before we leave.
2 comments:
Your a fighter!!
Wonderful photos!!! I am still praying for you Staci! Stay strong!
Dear Stacie,
Oh, how I remember the agony of making such a decision. (5+ years ago when I chose transfusions over chemo) I am going to share with you how I came to my decision, in case it might be of help to you.....
I pictured myself on my deathbed in two different scenarios. In the first one, I had chosen chemo. I was kicking myself and thinking, "I KNEW I shouldn't have done tx".
In the other scenario, I had refused tx. Even though I was dying soon after my decision, I had no regrets about refusing tx. I was comfortable, both emotionally and physically. When I shared this view with my oncologist, he finally accepted my decision.
Each person will imagine the two scenarios in her own way. I think it provides a window into our hearts and souls.
May peace be with you.
Kathy
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