Lewis Christie is an acute myeloid leukemia (AML) survivor. He is a peer mentor with the National Bone Marrow Transplant Link (nbmtLINK) and Imerman Angels, where he assists other people with cancer near his age who are either contemplating a bone marrow transplant or who have already had one. He is also a patient advisor to a company developing artificial intelligence (AI) applications to help people with cancer. He is retired from his work as an information technology professional and is now an avid reader of history books, loves to listen to music, and likes to cook.
My story begins as a 9/11 cancer survivor. I had been in a building at Ground Zero on September 11, 2001, and returned there every day afterward for over a year, breathing in the carcinogenic ash that would compromise my immune system. Then, 10 years later, at the age of 71, I was diagnosed with acute myeloid leukemia (AML).
I received my diagnosis after having a bone marrow biopsy, where a needle was inserted in my lower back to remove some fluid. The doctor evaluating the biopsy sample said that my white blood cell count was way too high, and my red blood cells were being squeezed out. He immediately sent me to the hospital to receive 2 blood transfusions. There, I learned that my red blood cell count was dangerously low.
Receiving my cancer diagnosis was devastating because I had always been in good health. Also, I had no idea what I should do next. The first oncologist I consulted advised me that my prognosis was very bad and that I only had 1 year left to live. My wife and I then scheduled appointments with other oncologists who told me to take a vacation while I could, since they also felt I had 1 year left to live. So far, there was no encouragement or path to take to survive.
Turning to bone marrow transplant for life-saving treatment
Eventually, my wife and I found an oncologist who provided some hope. I started chemotherapy, which lasted for 14 months. When planning treatment, my oncologist said that I should think about receiving a bone marrow transplant after chemotherapy because my cancer could come back much worse, and she typically only saw success with the chemotherapy for about 14 months. She gave me hope that a transplant could save or prolong my life. So, my oncologist searched for a donor through the national bone marrow registry and found a donor who was a match.
In March 2014, I received the transplant. I spent 30 days in the hospital and had relatively few side effects. However, 6 months later, the transplant failed for unknown reasons. My red and white blood counts dropped to 0. I was then put back on chemotherapy while my doctor searched for another donor. But, unfortunately, another donor could not be found through the registry.
At that point, my oncologist advised that she had seen transplant success using stem cells from the children of the person with cancer. So, in September 2014, my younger daughter donated her stem cells. She spent a day in the hospital where they took her blood through a machine. Her stem cells were taken out, and the rest of her blood was returned to her body. After, I was given a blood transfusion with her stem cells.
Recovering from my bone marrow transplant
After this transplant, the side effects were completely different from my first transplant. I could hardly walk and experienced rashes, coughing, blurred eyesight, uncontrollable hiccups, loss of appetite, muscle cramping, indigestion, numbness in my feet, and night sweats. But after 30 days, when I could walk again, I was released from the hospital.
Being home was not easy. Our home had to be thoroughly cleaned so that I would not develop an infection, and I had to be very careful of what I ate. There was a list of things I could not eat, including any deli meats, fruits like strawberries and raspberries that could not be properly washed, and any bakery products. My wife cooked all of our meals; we had absolutely no takeout food. I was also generally confined to my home for 1 year. If I went out, I had to wear gloves and a mask. I only went out to doctor visits.
After coming home, I still had low blood counts, so I went to the cancer center weekly to receive blood platelets to help stop me from bleeding and an injection to boost my white blood cell count. It took months before I was feeling much better. I slowly returned to where I could start eating normally, going outside to walk, and seeing friends and relatives. I had to avoid any physical contact with them so that I wouldn’t get an infection.
Life after bone marrow transplant
It has now been nearly 11 years since I first received my leukemia diagnosis. I feel very good and back to an almost normal life. My brother got me started playing golf, and my wife and I walk every day. I used to be a runner, but that is something I am no longer able to do.
However, my cancer story does not end there. After my second transplant, I developed chronic graft-versus-host disease (GVHD), a sometimes serious disease that only affects people with cancer who have received a bone marrow transplant using donor cells. With GVHD, the donor cells attack your body. Thankfully, my case of chronic GVHD has not been very bad. The symptoms I have experienced include easily bruising, constant skin peeling, trouble swallowing, hardening and cracking of my toenails and fingernails, dry eyes, reduced lung capacity that makes it hard to breathe at times, tooth decay, and annoying white patches in my mouth. While this may sound terrible, it’s not as bad as it seems. After being through 2 transplants, I can certainly handle all of this because I am still here!
I have found that being positive is probably one key to getting better. What really helped me as I was navigating cancer treatment and survivorship was attending support groups, talking to other people with cancer who had either thought about having a bone marrow transplant or who had received one, and working as a patient advisor to a company that was developing a computer program to relieve stress in people with cancer. Now, I have a lot of good things to look forward to for the rest of my life.
The author has no relevant relationships to disclose.