grateful – 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

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.

Who am I to argue?

IMG_20170425_145007409

A couple of weeks after I returned from Kilimanjaro I received two unexpected yet welcome pieces of mail. First, a note of encouragement from a retired oncology nurse. This woman doesn’t know me. I assume she read my story in the local paper. She congratulated me on my recovery and urged me to keep it up. I’m touched that she would think about me in the midst of her busy life. She has confirmed what I already knew; nurses are extraordinary people. Oncology nurses in particular have a special calling. They work incredibly hard caring for critically ill people. Some patients, like me, can be a pain in the butt. I think I’m funny, but I’m not sure the nurses always agreed.

She also sent me a graphic that said, “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Yup I agree with that. There is no sense waiting around for things to happen. You can enrich the life you’re living today. No matter what the circumstance you can get out of bed in the morning with goals for the day. When I finally came home from the hospital, my goal was to walk ten steps further than I did the day before. My first day I walked from the car to the kitchen, and then I needed a rest. It was about 10 steps so I figured the next day I would double the distance! Kilimanjaro was not on my radar screen I promise you that.

Did I have a great positive attitude every day? No. Somedays I cried, whined, and felt sorry for myself. That usually passed quickly since nobody wants to listen to me whine, especially me. Many days I was extremely frustrated with my progress. That feeling persists today. I still have issues with fatigue and memory. I can’t remember if I used to have a good memory, but I think I did. Ugh, I’m getting tired thinking about it. I question if I will ever completely recover. All I can do is try my best. The only thing I control is my attitude.

Back to my unexpected correspondence. I also received a letter from The Leukemia and Lymphoma Society. They want to give me an award!? LLS funded the research that saved my life. I feel like I should give them an award. Honestly, it baffles me. I’ve done a couple of fundraisers for LLS. That’s it. What I have done for LLS pales in comparison to what they have done for me. In addition to life saving research, they provide online discussion boards, which have been extremely helpful to me. They offer more patient services than I can list here. In the future, I would like to motivate others to fund raise, but to date I’ve done little. Well I intend to accept my award graciously however undeserved it seems to me. Who am I to argue?

IMG_20170425_145304699_BURST000_COVER