Leukemia Didn’t Beat Me. I Beat It! – Jason Clark

Being diagnosed with acute leukemia was the most devastating and life-changing event I have ever faced. I was 35, healthy, and fit. I never drank or smoked. About a month before my diagnosis, I got really sick. I thought I had the flu. I was being stubborn and wouldn’t go to the doctor to get it checked out.

I finally went to a walk-in clinic after someone at work insisted I go to a doctor. The doctor who saw me did a blood test and told me that my white blood cell counts were extremely high. He then referred me to an oncologist. When I went and saw her, she was baffled by some of my symptoms. I had a swollen parotid gland (parotid glands are salivary glands located between the ear and the jaw), a mediastinal (abnormal) mass in my chest, my lymph nodes were swollen so badly that you could see them through the skin, and I was having difficulty walking.

A few days later, after getting some blood tests done, the oncologist informed me that I had acute lymphoblastic leukemia (ALL) (T-cell phenotype,) a very aggressive cancer that requires immediate action. When I was diagnosed, I kept asking myself why and how? But, I couldn’t concentrate on that; I had to start my treatment right away and focus on it.

My oncologist actually wanted me to go to the ER to start treatment immediately because of my symptoms, but I told her that I had to take a couple of days to get my affairs in order. I needed time to write a will, to give power of attorney to my parents, and to get a room at my hospital’s cancer ward. She said that would be okay, but that I couldn’t wait any longer than that to start treatment. I was admitted to the hospital on March 3, 2009, two days after my diagnosis.

In the hospital, a team of cancer doctors who worked with my oncologist told me what to expect, and they also told me that it would take years to be cured. Hearing the word cured encouraged me like you wouldn’t believe. Previously, I didn’t know much about leukemia and thought it was untreatable. I was wrong! I was told that treatment involved two stages: chemotherapy to achieve remission, and a bone marrow transplant for the highest chance of cure.

I would be treated first with the Hyper-CVAD protocol which achieves a remission in about 80% of patients. It would involve eight cycles of high-dose chemotherapy, and I would have to be in the hospital for each cycle. I was told that the chemo would severely reduce my blood counts and that I would be at risk of getting serious infections and anemia.

In addition to that, I was worried about the chemo and what it would do to my body. Would I be sick all the time? Would I permanently lose my hair? Would it cause long-term effects after treatment was over? I had a lot going through my mind at this time! But I had to forget about all that and start the treatments.

I had a central line put in my right arm and an Ommaya Reservoir placed beneath my scalp. The central line would remain in my arm for the duration of each cycle, which took about two weeks. This would allow IV lines to be easily attached and removed without having to get constant needle sticks. The Ommaya Reservoir would stay in for all eight treatment cycles.

A couple of weeks later, there was a major incident in which I almost died. The Ommaya Reservoir moved, and I had to have surgery to realign it. During this surgery, the site of the incision became infected with MRSA (methicillin-resistant Staphylococcus aureus). The port was immediately removed, and I was placed on heavy doses of antibiotics. I survived it thanks to the wonderful staff who discovered the MRSA right away. I had to stay in the hospital for over a month to get this treated, so I started my second treatment cycle without going home for a break. I also had spinal taps to finish the intrathecal treatments. They were very tolerable and not painful.

This first stay in the hospital was rough on me; I was afraid that my future treatments would be similar, but I was wrong. The rest of the treatments went much smoother. However, there were more incidents. Chemotherapy made me pretty sick on a few occasions, but the rescue medicines the staff gave me helped a lot. Also, I developed and was treated for a pulmonary embolism, which may have been caused by being in bed all the time. Again, the wonderful staff at the hospital detected it early, and after a regimen of blood thinners, it was swiftly taken care of.

Surviving serious complications like MRSA and a pulmonary embolism during treatment of leukemia is nothing short of a miracle and a blessing. The chances of surviving such complications are very low. Leukemia treatment severely reduces blood counts and greatly increases the chance of a serious infection. The counts have to be raised artificially with drugs, platelet transfusions, and blood transfusions. I am tremendously grateful to all of the people who donate blood and platelets! I can’t remember exactly how many total units of blood and platelets I received, but I am sure it was around 40. I definitely wouldn’t have survived my treatments without them.

After finishing my Hyper-CVAD treatments in 2009 and being told that I had achieved remission, I started maintenance therapy in early 2010, which involved oral chemotherapy by pills. I began to focus on the next stage of treatment: a bone marrow transplant. Moffitt Cancer Center did search of the National Marrow Donor registry, and within a month they found a donor with a perfect match!

After being evaluated and tested for a transplant at Moffitt, I was admitted in June 2010. Knowing that the transplant carries the highest risk of mortality with leukemia treatment, I was a little scared about going through it. However, my fears were unwarranted. The transplant went very well. A few days after admission, the new stem cells arrived. They came from Marieke , a very generous female donor who lives in Germany. She even gave two units of stem cells so that the grafting process would be more successful. I am forever grateful to her! There were no serious complications during the transplant, other than the normal sickness from chemo. I did have problems with a slight pneumonia and mouth sores, but they were temporary and easily treated. I stayed in the hospital for a little over three weeks. On June 27, 2010, I was discharged, and my leukemia treatment was finally over. But, I still had much to do on my road to recovery.

After leaving Moffitt, I temporarily moved into an apartment that was within a few minutes from the hospital. I had to stay close by in case I had any serious issues. I also went back to Moffitt every day for tests. Not only did I have to be monitored for stem cell grafting, graft versus host disease, and low blood counts, I also had to be monitored for leukemia relapse. This lasted about two months, and then the visits became more sporadic as long as I continued to show improvement. These visits tapered off over the next two years, and the leukemia never came back.

Finally, on January 7, 2013, my visits to Moffitt ended. My ordeal with leukemia, from 2009 to 2013, was finally over! In 2015, I reached the five year mark, at which you’re considered cured if the cancer hasn’t relapsed. Considering the aggressiveness of acute lymphoblastic leukemia, I am very fortunate and blessed to be cured. There are so many people that I am grateful for in helping me reach this cure: the staff at the hospitals where I received treatment, the amazingly generous people who donate blood and platelets, the wonderful and caring stem cell donor Marieke from Germany, my friends and family who helped me through this ordeal, and, most importantly, God, who made my cure possible.

Please visit my blog at jdchasfaith.blogspot.com to read more about my ordeal and to stay updated with my progress.

Tampa, FL, USA

[1] The term ‘hyper‘ refers to the hyperfractionated nature of the chemotherapy, which is given in smaller doses, more frequently, to minimize side effects. ‘CVAD‘ is the acronym of the drugs used in course A: cyclophosphamide, vincristine, doxorubicin (also known by its trade name, Adriamycin), and dexamethasone.

[1] An Ommaya reservoir is a synthetic dome that is surgically placed beneath the scalp and attached to a catheter that is inserted within the brain

[1] Intrathecal treatment is a treatment in which anticancer drugs are injected into the fluid-filled space between the thin layers of tissue that cover the brain and spinal cord.