Bone marrow transplant – Life after Leukemia

What Now??

I feel better than I have in years. Literally two and a half years of varying degrees of illness. So…What do I do now?

Missing-Brain-Jigsaw-Puzzle-Prismatic — I’m puzzled

My cancer is cured. That is what my doctor told me at my two-year visit. The FLT3 genetic mutation that I had increased my chance of relapse early on. The first hundred days after transplant were a high-risk time for me. Every day that passed decreased my risk of relapse. Today the chance that I will relapse is infinitesimal. My cancer journey is over. I will always be a transplant patient and I still have to see my doctor every six months, but leukemia is in my past.

Dr. El-Jawahri discontinued my last two prescriptions and what a relief that was/is. I have been taking an anti-viral and oral chemo daily for two years. The side effects were unpleasant. My intestines have been a jumbly, rumbly mess. I learned to be careful about what I ate. Still, some days I didn’t dare stray too far from the house. And the fatigue, a ball and chain I dragged through the day, mostly gone now. I feel better than I have in years. Literally two and a half years of varying degrees of illness. So…What do I do now?

When I was diagnosed in 2015 I was in the midst of a career change. I was one course short of getting an associate’s degree in web development. I was an A student and I had every intention of taking the final class in the next semester. In the third week of an internship, I was suddenly hospitalized and received massive amounts of chemo. For the next six months, I was incredibly ill. Guess what happened to my newfound knowledge? It evaporated. Chemo was like a blowtorch to my brain. I can’t blame it entirely on chemotherapy. Anytime you learn a new tech skill, it’s important to use it. Practice and practical application cements the information in your brain. It’s mostly the chemo though. It seems to have carved a hole in my memory.

So… what do I do. I spent time, energy and money on programming classes. Should I start over and try to relearn C++, HTML, CSS and Visual Basic? Alternatively, should I take this as a message from God? “Gayle, take a hint, a career in web development is not for you.” said the almighty one. What to do, what to do? I wake up at night with this question ringing in my ears. Let me be honest. It’s not just the career question that has me puzzled. My life changed abruptly in June 2015. Now it has happened again. Until recently, my world revolved around Leukemia, treatment and recovery. Today I am free to return to a normal life. You would think that would be easy. I’m sure I’ll figure it out although it might take some trial and error. No one can do it for me. Stay tuned in, the life after leukemia adventure continues.

image of Christ

What does that feel like?

It is odd. I owe so much to this young woman. Without a Bone Marrow Transplant, my Leukemia would have almost certainly returned. That would be curtains for me.

We left Massachusetts at 5am August 10^th to head to Wisconsin. After twelve hours of traveling west on interstate 90 we stopped for the night just short of the Indiana border. Friday morning we finished the trip, just over 1100 miles. It’s a long drive but well worth the effort. I’m going to meet my bone marrow donor. Steve and I have been anxious to meet Kelly and thank her in person. It’s not possible to express the level of gratitude we feel, but we can at least buy her dinner.

It is odd. I owe so much to this young woman. Without a Bone Marrow Transplant, my Leukemia would have almost certainly returned. That would be curtains for me. I had Acute Myeloid Leukemia with the FLT genetic mutation. That genetic mutation means that my leukemia would not stay in remission with chemo alone. My best and statistically only chance was a successful transplant. If the match had been less than one hundred percent, I would probably have had significant rejection issues. I am in contact with people on the LLS community forums whose side effects are disabling. Leg swelling, skin disorders, intestinal, lung and liver issues to name a few. For some people life after transplant is a living hell, but life nonetheless. My recovery has been nothing short of miraculous. I’m nearly two years post-transplant and my complications are minimal and manageable.

Did you notice I said “had” acute myeloid leukemia? According to the medical professionals, I have AML that is in remission. They won’t consider me healed until the fifth anniversary of my transplant. I declared myself cured the day I got the transplant. That is my attitude. Leukemia is behind me. When I reached the summit of Kilimanjaro, I asserted my recovery from treatment and transplant as complete. Again, my doctor disagrees. I still drive into MGH every other month so they can draw blood, monitor my blood cell counts, check my general health and give me injections. In September, I get the final installment of my childhood immunizations. I hope the appointments will be quarterly soon. I’m not complaining. I am the lucky recipient of a 100 percent matching, unrelated, bone marrow transplant.

Which brings me back to Kelly, my donor. We met her and various members of her family Saturday night for dinner. I wanted to hear her side of the story. She tried to make it sound like not a big deal. She was in the college library when a donor drive was going on. Being the altruistic gal that she is she went ahead and filled out the paperwork and had her cheek swabbed. The chance that she would ever be called to donate was slight. Then it happened. The registry contacted her for further testing. Lo and behold, she was a perfect match! She flew to a Detroit hospital and spent a few hours in the operating room. The doctor pushed a coring/extraction tool into her pelvis and drew out marrow many times. She spent a night in Detroit and flew back to Wisconsin. She had swelling across her lower back for over a week. It sounds uncomfortable and inconvenient. I thought her marrow would be drawn at a local hospital. I didn’t realize she would need to travel. It would have been far easier to say no. Thank God, she said yes. No matter where life takes her she will always have the certain knowledge that she saved a life. What does that feel like?

Oh, by the way Kelly and her family are delightful people. They invited Steve and me over for a cook out Sunday, which happened to be my birthday. We chatted and laughed. They surprised me with homemade birthday cake and sang happy birthday. It was a perfect endnote until I meet my lifesaver again.

Kelly, Steve and I — We met my donor Kelly

The Whiny Cranky Phase

Apparently, I have entered the whiny cranky phase of my cancer journey. Lately I have been feeling down because of the aftermath of treatment. I had a bone density test last week and the results are Osteopenia. I’m not yet 55 and I already have degeneration of my bones. Chemotherapy and Prednisone, which I was on for an extended amount of time, are the culprits.

My feet have been bothering me since I returned from Kilimanjaro and my knees have been killing me for 2 or 3 weeks. All of this makes me feel old and vulnerable. Should I buy my walker now or wait until I fracture my hip? Come to think of it, I have a walker in the closet. It’s good to be prepared. When I first got out of the hospital, I was so happy to be alive nothing else mattered. Well the bloom is off the rose. Now I’m coping with the repercussions of treatment. In addition to having Osteopenia, I am at an increased risk for both breast and skin cancer. Great, something to look forward to.

While wallowing in self-pity I went on the LLS web site. I participate in several online groups so I was looking for someone to commiserate with. Instead, I found a woman with the exact same leukemia as me. Her name is Miranda. She was diagnosed in January with Acute Myeloid Leukemia with the FLT3 genetic mutation. The FLT3 mutation increases the chance of relapse exponentially. She was looking for someone who could relate to her situation. Miranda has relapsed and the hospital will readmit her Monday. She will undergo grueling 7&3 induction chemo (intravenous chemo 24/7 with additional chemo the first 3 days) again. Hopefully, this will put her cancer into remission. The doctors are searching for a bone marrow donor, which is her best chance of survival.

Her post brought me to tears. Steve was surprised to find me in the kitchen staring at my phone and weeping. Suddenly everything came flooding back. You have AML with FLT3. That statement changed my life forever. When the doctors explained what it meant I was scared out of my mind. Instantly I am reminded how well things have gone for me.

After that devastating diagnosis, everything went my way. First, I had the good fortune to live near Mass. General, a world-class medical institution. Induction chemo successfully subdued my cancer into remission the first time. If the cancer doesn’t go into remission they up the chemo dosage and repeat the treatment which would be horrible. Miraculously I had an unrelated 100% matching bone marrow donor. That saved my life. Without a donor, my chance of relapse was extremely high. I have had few complications from the transplant. Only minor issues that are manageable. I consider myself exceedingly lucky. In fact, I am the luckiest person I know.