Today, I turn three - in stem cell transplant years. At the three-year mark after your
transplant, if you're still in remission, the risk of recurrence of acute lymphoblastic leukemia (ALL) goes way down. Not to zero though. No guarantees. But still, it’s kind of a big deal. I've been waiting for this day, a little nervous, a little excited. I wanted to be a leukemia survivor instead of a leukemia patient.
But for me, determining if I was in remission was a bit tricky. How would they know if I was in remission? For most leukemia patients, a bone marrow biopsy is how. But not with me, My bone marrow was normal from the start and
stayed that way. - a fun fact that flummoxed the doctors.
My remission status is determined by a blood test called the BCR-ABL p190. That's the test for the Philadelphia (Ph) chromosome - for which I was positive. This mutant chromosome promotes the growth of leukemia cells and it used to be a predictor of a dismal prognosis. Luckily, the advent of drugs that target the Ph chromosome changed that. When I went into remission, my Ph status became negative. So, every three months, I get tested to see if I am still negative and thus, in remission. Over the years, I never really worried about the results. But this last time was different. This time, I couldn't help but wonder, as my year three birthday approached, would this be the one? Would the universe play one last dirty trick on me and my test would come back positive?
My mind wandered back to August of 2021. I had spent much of the summer in and out of the hospital getting chemo. Then I’d come home where I remained bed-bound for over a week with debilitating, indescribable, life-sucking exhaustion. And then, just as I was feeling better, I'd go back to the hospital for more. Rinse and repeat. This barely bearable cycle would only end if I matched with an anonymous stem cell donor. That’s what could cure me. But it could take months to match with a donor. My care team at UAB signed me up with the Be the Match registry. The matching process is complicated. Getting the best match, based on quite a few criteria, is critical for a successful transplant. It was sort of like online dating for a cure - without the photoshopped profile pic. "Give us your blood and we'll find your perfect match!"
Then one day my oncologist told me they had found a match! Just one, but it was a near perfect one! My donor was a young male in his twenties. That’s all they could tell me about him because of confidentiality and ethics rules. I of course wanted to know more. What motivated him to donate? Did someone he loved die for want of a match? Or did someone he loved live because of an anonymous donor? Whatever his reasons, I was happy I would get his young, healthy stem cells. The doctors warned me that donors can back out at any time. They can rescind permission for the use of their cells for whatever reason. Transplant day couldn’t come soon enough.
When the day of my transplant arrived, the doctors and nurses told me that it would be anticlimactic – not much different than a chemo infusion. My donor’s blood yielded a high number of stem cells. Impressive! The nurse came in with the infusion bag. It looked like a bag of marinara sauce. They hooked it up to my port and started the infusion. The nurse told me to look closely because you can see the stem cells! They looked like little translucent flying saucers racing down the tube – little alien stem cells coming to rescue me. My new cells grafted quickly, and the transplant was a great success.
But the coming months and years proved to be the most difficult and challenging of my life. Recovery was, in turns, painful, exhausting, depressing, and debilitating. The hundred-day post transplant mark, when things were supposed to get better, came and went. The summer's intense chemo regimen made my feet tingle from neuropathy and all but destroyed my vestibular system, making me dizzy and unable to walk without a rollator. I developed Graft versus Host Disease (GVHD). My new stem cells did not like my body's tissues. They rebelled by making dry, flaky rashes on my skin, tightening the fascia in my legs, distorting my limbs with edema from my feet to midriff, attacking my liver, and making my mouth so sore and sensitive that eating was a painful prospect. There were days when I wanted to just die and be done with it. Looking for solace, I tried to find ALL patient stories online that would give me hope. Most of the patient stories I read online only skimmed the misery – like stones skipping over the water instead of sinking into the deep, dark places. I wanted to read about someone like me, someone who was suffering - but then triumphed. The one-year mark, when they say your energy comes back, passed by me with things getting worse not better.
But I did get better. Slowly. Gradually. And now, three transplant years later, I was having
my next lab test to see if I was still in remission. On the day my lab work was scheduled to show up on the UAB Patient Portal, I checked it first thing in the morning, 7 am. Not
there yet. "Expected at 7:35". I checked again at 7:20 and at 7:34. No, they really meant
7:35. I got some more coffee and refreshed the page. And there it was. Negative. It was
negative. I got a little teary. I thought about my donor and the friends, family, and my caregiver boyfriend who got me through. People who still take care of me. Who understand that I still need their help walking in the dark. Who sit outside with me
at a restaurant on a hot Alabama summer night because I'm still a bit too immuno=compromised for inside people-packed places. Who send me birthday cards every August 31. Happy Birthday to Me.
Beth Kitchin PhD RDN
Blogger
Leukemia Survivor
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