Cancer is not for wimps. As I sat here receiving this toxic treatment this morning, Rituxan pulsating through my veins, I had to return the call to the NIH Transplant Coordinator. I pondered and debated this morning if I should call since I am so loopy from the premedicines. I didn't want to sound like a fool with slurred speech and few comprehension skills. I arrived at the decision, that there was no way my curiosity could remain sated until Friday and that I would make the telephone call. I decided that as soon as the Transplant Coordinator answered, I would introduce myself and offer the warning that I am heavily medicated.
Dialing her number, I knew a vital portion of my destiny was hanging in the balance - waiting on the donor search results to determine if there was a perfect match for my transplant - a genetic twin, more like me than my own flesh and blood. As I stated above, cancer is not for wimps. Her phone rang and my heart raced. A portion of my heart wanted my call to be directed to voice mail. Then the voice of Jennifer - the NIH Transplant Coordinator, who had been managing my donor search, was on the line.
As with all life-altering decisions I have been faced with during this cancer journey, I have been praying and asking God for His clear guidance on this transplant decision. A stem cell transplant is one of the procedures where the experts take the human body nearest to the point of no return and then try to salvage your life. My own immune system would be virtually annihilated by chemotherapies (I believe this trial is using seven - yes seven - different toxic agents) to accomplish this task. Then the donor stem cells would be infused into my body and we would pray that before an infection killed me (with no immune system to defend me) that the donor's stem cells would engraft. In addition, serious, life-threatening complications with Graft Versus Host Disease are of the utmost concern. This is where the donor's cells would view my body as an invader and could turn on my own body and attack it. Some people with serious Graft Versus Host Disease have actually committed suicide due to the unrelenting pain and suffering it can cause.
Jennifer was straightforward and within minutes of making contact with her, I was told that I DO NOT have a 10/10 match - AT BEST they anticipate a 9/10 match. The donor search team will discontinue further search activity until/if I make a more dedicated commitment to transplant. I was thankful to know this as I didn't want my potential donors to be contacted too soon and have to ponder how their own lives would be changed by agreeing to attempt to save my life. I could not be told any great detail about these potential donors who could generate a 9/10 match for me. I was told part of them live in the USA and part of them live outside of the USA.
If I was already assuming a possible mortality rate of 40 percent from undergoing the transplant with a perfect 10/10 match, those odds would further decline by approximately 9 percent for each non-match (9/10). Graft Versus Host Disease threatens approximately 40-50 percent of the transplant participants with 10/10 matches and that figure would increase to approximately 60 percent for a 9/10 transplant.
I am processing this information (in the presence of benadryl and Rituxan infusing) and I am not certain how I feel about it at this moment - I had prayed for the transplant door to be closed if there was no perfect match - and that appears to be happening - at least for this time and season. Obviously, with each month, new potential donors are added to the registry and thus, a perfect donor could yet emerge. I knew that a very perfect match would still result in my facing a very serious procedure with a very high chance that I would not survive it. Without a perfect match, considering a transplant seems more daunting and threatening.
It is now very sobering to realize my one "secret weapon" (transplant with a perfect match) that I always pondered keeping in my back pocket to pull out when death was banging loudly on my life, no longer exists. Although it previously only dwelled in my heart and mind, there was a degree of security in just believeing there was a perfect match for me.
My life is in His hands.
1 comment:
Wow, Stacie. This is quite sobering news. I can't imagine talking to the transplant coordinator & hearing what she had to say that could affect my life so much. May God strengthen your emotions & give wisdom during this time. We are all in His Hands.
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