I felt like I was so close to getting over the hump, so close to getting back to the “old me.” I’ve been feeling well most of the time. The headaches are fewer and less intense. My skin and eye GVHD are manageable and almost gone. I worked four days this week without getting too tired and even felt bold enough to submit an application to attend the resident Army War College next year. I recently subscribed to Outsidemagazine and have been eager to hike, camp, do a mud run, and just be outdoors.
Unlucky Roll
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| By Gaz at en.wikipedia (Transferred from en.wikipedia) [GFDL (www.gnu.org/copyleft/fdl.html) |
Yesterday I drew a card in the game of life that said “GO BACK THREE MONTHS.” That’s the way it felt to learn that I have not responded to the chemotherapy regimen I’ve been on since the previous biopsy showed I am FLT3 positive (the genetic mutation causing the leukemia). Last week’s biopsy showed that the level of FLT3+ cells has actually increased slightly, and so a different plan of attack is needed.
The best treatment for me is Sorafenib, a FLT3 inhibitor taken orally. It worked well pre-transplant. Post-transplant, however, has been a different story. I’ve tried taking it twice, but each time it has caused my skin GVHD to flare up. We’re at the point now where the risk of not taking Sorafenib exceeds the risk of worsening GVHD, and so I’ll start it on Monday, along with a much higher dose of steroids to (hopefully) ward off any reaction.
The frustrating part is that I was nearly off steroids completely. I was also down to less than 20 pills a day and feeling pretty good. The steroids have generally made me feel bad much of the day, and bring with them weak legs, fatigue, and a feeling of malaise. I’ll also resume taking other prophylactic medicines, including an anti-viral and anti-fungal. My chemotherapy drug will also change and will be administered subcutaneously (an injection in my stomach area), rather than by IV.
Let me be clear: the sky is NOT falling. I am still technically in remission and remain fairly healthy, other than a nagging cough. For now at least, my energy level is good and I’m seeing well. I am able to interact with my family most of the time, which is alone enough reason to be joyful.
It’s probably a bit exaggerated to say that I’ve lost three months of progress. That’s not the whole story, since my body has healed and strengthened over the last three months. Hopefully it and my donor cells are on better terms, as well, lowering the risk of GVHD.
But this is very frustrating. It has seemed for the last thirteen months that every positive turn has been followed by a setback. I’m not suddenly losing faith or turning bearish on my recovery, but I am being honest. God is still good. He is still sovereign. His ways are still higher than my ways. I realize that last statement to be truer all the time. But, man, I want to be healthy.
Getting to the Right Place
A friend sent me a word just yesterday: “His delays aren’t denial.” How true. Just because something doesn’t happen when I think it should doesn’t mean that God doesn’t hear me, or that it won’t happen in His timing.
God writes straight with crooked lines. The path He takes us on usually doesn’t seem the most “logical” or “expedient” in our own understanding, but the end result is always the perfect one—perfectly timed, perfectly arranged, perfectly ordained. This isn’t the next step I would have chosen, but it was allowed by the God I have chosen. As a follower of Jesus, I am committed to go with him on whatever path He chooses, knowing it will lead me to the perfect destination.
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By the way, this is my 100th blog post! Thanks for continuing to support and pray for me and my family. May God receive all the glory.