After Kilimanjaro – 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

Celebrity?

Sometimes I wonder if I share too much. Is it necessary for me to reveal my most private issues like social anxiety?

I wrote this months ago and I didn’t post it to the blog. Why? Sometimes I wonder if I share too much. Is it necessary for me to reveal my most private issues like social anxiety? Well, after some thought I have decided yes it is necessary. This blog is about self-discovery and pushing myself to be a more self-aware person so here goes.

Recently the local TV station, WMCT-TV, interviewed me. I had done a couple of newspaper interviews about climbing Kilimanjaro, but this was the first TV spot. Of course, climbing Mt Kilimanjaro is not remarkable on its own; many people climb Kili every year. The fact that I did it eighteen months after a Bone Marrow Transplant makes it noteworthy. Also raising money for the Leukemia and Lymphoma Society gives the story another wrinkle. I was surprisingly relaxed about appearing on camera. It is easier to talk to a camera than a flesh and blood human being. No stress about remembering a name or saying the wrong thing. I have social anxiety, which most people would find hard to believe. I hide it well I think. On the surface, I try to smile and concentrate on what people are saying. On the inside, I have nagging fears. I am sure I will call someone by the wrong name or misspeak and offend them. It is a constant drumbeat of doubt and it can be exhausting. It would be easier to stay home, but I do not want to be a hermit.

I enjoy forming meaningful relationships with people. It’s the struggle of small talk that bedevils me. I want to know what you love to do; what brings you joy? What do you fear? What makes you laugh? Tell me about your life experience. We are all products of our upbringing and events. What makes you, you? Of course, you can’t delve into the inner workings of someone’s mind until you know them a bit. Some people I would rather not get to know better (being honest). Hence the need for small talk. You have to dip your toe in the water before you decide to dive in. Therefore, I push myself to meet new people and socialize. I know I sometimes come across as standoffish (is that a word?) or conceited. That is not the case. I feel insecure approaching strangers.

Recently, my stepson Chris got married to his sweetheart Bri. I have met Chris and Bri’s friends several times at various parties. Even though I know their friends, I’m extremely hesitant to call them by name. The entire reception I don’t think I addressed a single person by name. The drumbeat of doubt continually pounds away. You’ll say the wrong name or something inappropriate, you’re going to offend someone says the negative ninny in my mind. I smile, socialize and pray I don’t have to introduce anyone. I told my husband years ago “Don’t wait for me to introduce you, just stick your hand out and say hi I’m Steve. If you wait for me to make the introductions, you’ll be waiting a long time.” It can be awkward at times, but I can’t seem to get over it.

Back to my rising star of celebrity. I have been asked to speak at the Rotary Club about my experience battling leukemia and climbing Kilimanjaro. A second ago, I said I have social anxiety so you might think public speaking would be an issue right? I know people that have heart palpitations when they think about public speaking. It doesn’t bother me; in fact I enjoy it. I have an interesting story to tell and I want to raise awareness of blood cancers. When you’re in front of people there is no personal interaction. You are talking at them, not with them. No small talk, no names to remember. I’m looking forward to it.

All told, I have done two newspaper pieces, one TV interview and now an upcoming speaking engagement. Oh yes this cancer gig is working out for me. I’m a celebrity in my own mind. Can fame and fortune be far behind?

Below are links to my press:

Wmct-TV interview

https://www.youtube.com/watch?v=iAxGy6Vq57E

Metrowest News

http://www.metrowestdailynews.com/news/20170130/hudson-cancer-survivor-to-climb-mt-kilimanjaro

http://www.metrowestdailynews.com/news/20170405/hudson-cancer-survivor-scales-mt-kilimanjaro

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?

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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?

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It’s Complicated

I had just dropped my luggage on the kitchen floor after traveling 22+ hours home from Tanzania. I was badly in need of a shower and a nap, but instead I called Laurie’s son Brian and asked if I could come visit.

“I don’t know how to say this or when is the right time so I’m just going to say it. Laurie is much worse, her cancer has spread, you need to call Brian. Honey it’s really bad.” My Husband said the moment we entered the house. I had just dropped my luggage on the kitchen floor after traveling 22+ hours home from Tanzania. I was badly in need of a shower and a nap, but instead I called Laurie’s son Brian and asked if I could come visit. Steve and I drove to New Hampshire to visit my childhood friend of 48 years. Laurie was entering the end stage of her earthly life, although I would not believe that for another week.

Four days prior, I stood on the summit of Mt. Kilimanjaro. I had achieved both of my lofty goals: raise over $10,000. For LLS and climb Kili. Eighteen months after enduring a brutal chemo regimen and a bone marrow transplant, I slammed the door on Leukemia. Cancer was in the rear view mirror as far as I was concerned. I returned home full of confidence, my customary optimism front and center. I could handle whatever life threw at me, or so I thought. My celebratory mood was short lived.

We arrived at Laurie and Ken’s house Thursday afternoon. Only immediate family were there; Laurie’s parents, two children and husband Kenny. We went to the living room and talked with Ken and Tom (Laurie’s dad) for a bit. Shortly thereafter Kenny’s two older children arrived. One of the beautiful characteristics about Laurie was her loving acceptance. Ken had two children by two different women when he and Laurie started dating. She was unperturbed by their existence. Beyond that, she completely accepted and loved them. Remarkable. Anyway, we stayed in the living room and talked. I was anxious to see Laurie, but sensitive that this was precious time for her family. Before too long I was able to enter the darkened room where Laurie was lying in a hospital bed. We talked for a few minutes, nothing earth shattering. I mentioned our grade school days, and then asked her if she had the strength to keep fighting. She looked me in the eye and said, “Yes I’m going to fight just like you did, I am still fighting.” She tired quickly. I know all about fatigue so I took my cue and said goodbye. It was time for us to leave. I felt that we had imposed on family time already. “I know you will have relatives visiting all weekend. Would it be possible for me to stop in early next week?” I inquired. “Yes of course” was the kind reply.

I returned alone, the following Tuesday. Again, her family allowed me to spend valuable time with her. Kenny and I went in together. Laurie was in and out of consciousness. Kenny left us alone and I lay in the bed next to her and held her hand. She recognized me and we exchanged a few words. Even though her condition had deteriorated, I still believed she could recover. Her breathing was strong and regular. I remarked on it and she humored me, “yes I’m doing well” was her response. Yvonne, Laurie’s oldest and closest friend arrived. I know Yvonne well, but my connection to her has always been through Laurie. It was time for these dear friends to be alone. I surrendered my spot on the bed. As I stood by her bedside, stroking her hair and saying goodbye Laurie looked at me and said, “I’m sorry.” I was stunned. “Laurie you have nothing to apologize for” I assured her. Those were her last words to me. She knew the end was near and she was concerned about me. I was notified of her passing Thursday morning.

The wake and the funeral were beautiful. Several people, including Yvonne spoke eloquently at the wake. There were some good laughs. Laurie had a tremendous sense of humor and she loved to laugh. I felt terribly conspicuous. Everyone knows that I survived cancer. Was my presence an ugly reminder of life’s capricious nature? Would her family resent seeing me? It would be natural to wonder why I lived and Laurie died. I wondered myself. Why was Laurie taken from us? It made no sense. I survived a cancer that kills 74% of adults that are afflicted with it. Laurie succumbed to breast cancer. Why?

Don’t misinterpret my words. This is not survivors’ guilt. I am profoundly grateful to be alive. I understand exactly how fortunate I am and how miraculous my recovery is. For a long time it was all about me. My survival. My recovery. My triumph over cancer. Suddenly I need to develop a coping mechanism for the loss of a friend. This is hard. My post cancer life is complicated. So this is Life after Leukemia as well, learning to deal with people you love dying from cancer.