Marilyn, Angioimmunoblastic T-cell Lymphoma
Marilyn, Angioimmunoblastic T-cell Lymphoma
It was July 2019, and my husband and I were at a BBQ. As usual, I ate too much and my stomach was hurting, which I attributed to overeating. Also as usual, I vowed to curb my eating habits, but being an overweight foodie, vows to change my eating habits only lasted a few days. This time, however, the stomach pain didn’t go away. It wasn’t distracting, just annoying.
At the same time, I was applying for a social work position at a hospice agency, and they wanted me to get blood tests to see if I had rubella and German measles. I went to my internist who gave me the blood test and as he was finishing, I asked him, “What is this pain I have? It doesn’t seem to go away?”
That was where it all started. He sent me to my gynecologist, and my gastroenterologist to rule out any disorders that they would be able to treat. Then he started sending me for MRIs and CT scans. I followed his direction without fear because in my wildest dreams, I never thought it was anything serious. My parents, sisters, and brother never had serious medical issues, so why should I be any different?
Shortly after the tests were completed, my internist called me to say I needed to see an oncologist. That stunned me! Denial has always been my favorite and most effective defense mechanism, because I still insisted he was trying to rule out other disorders, and thought he was just covering his bases. But my wall of denial started to develop some cracks, because I was beginning to get anxious and scared, but still able to shoo it away.
Eight months passed with more tests than I have taken in a lifetime. It was now March 2020, and my third oncologist, who I trust with my life, informed me that I had stage 3 angioimmunoblastic T-cell lymphoma. It is a rare and aggressive form of lymphoma, and he said that chemotherapy, a clinical trial in between chemo treatments, followed by a stem cell transplant would be my treatment. “You should be fine.”
It was also the beginning of the COVID pandemic which was an added stressor. My only consolation was that the whole world was now as anxious as I was, but for different reasons. We all wore masks and gloves, and isolated ourselves. Because my immune system was compromised, and COVID was everywhere, I spent most of my time at home and at the hospital receiving treatment. My wall of denial crumpled, but I was receiving the best care possible at the best cancer hospital in the country, so I learned for the first time ever to allow myself to be taken care of by others.
My medical team was marvelous, my family came to my rescue and Zoom meetings became my main source of socialization. I joined cancer support groups on Zoom and our family gatherings all took place weekly on Zoom. What an amazing invention!
I got through chemotherapy and the next step in my cancer journey was a stem cell transplant. The entire ordeal was like being in a science fiction movie. It was an amazing experience, but in reality also an exhausting one. I was in the hospital for a month, then went to my sister’s house to recuperate. I was weak and had to rebuild my strength. I had new blood, just like a baby. One year after the transplant, I had to get all my immunization shots all over again. The pandemic was beginning to ease up a bit, but like a baby, I had a new immune system and still had to protect myself from COVID and every other disease.
Eventually, I got used to my new life with cancer and learned that writing about my experiences was a great way to cope. One of my nephews put a blog together for me —I still post essays monthly. I still belong to my cancer group as even though I was in remission, the cancer cloud never really left me. I was always afraid of getting sick, and every twitch or minor ache made me think that cancer was back.
I was already in remission when I finished my treatment in October 2020 but it took me a long time to be able to move out from under the cancer cloud. When I was finally comfortable enough to put cancer behind me, I had a few glorious months where I felt victorious. Then in February 2022, I had a cancer recurrence.
My task in life is to balance the good and the bad.
Apparently, the lymphoma had only shrunk to undetectable proportions, and now it was in full bloom once again. As the most aggressive treatment was apparently unsuccessful, my oncologist recommended a new clinical trial and was very optimistic thinking that this particular drug would attack the lymphoma mutations in my body.
When I was first diagnosed, I was in denial but my fear and anxiety diminished as I went through over 8 months of treatment with the support and guidance of my medical team. They continued to be supportive during my remission but when I learned that cancer was back, there was absolutely nothing that could have made me feel safe.
I was stunned that it was back! I was angry because everything I went through wasn’t enough to get rid of this awful cancer bugger! I was unsure of everything I used to be sure of. It was a terrible time, and I was inconsolable, snapping at my husband daily. It took a long time to realize that I was taking my anger out on him – until a close friend brought that to my attention, I just thought I was angry because he was annoying.
It is now a year and a half later, and I am still on the clinical trial. I still get angry, but I know it is the situation and not my husband or anyone else. I am sad because I have low-level lymphoma, but I am also learning every day how to balance my disappointment with patience and gratitude because, after all, the clinical trial pill is still working.
I am learning the task of accepting uncertainty because I don’t know how long it will continue to work and to balance the uncertainty, I try to make each day meaningful. It also comforts me to remember my oncologist’s assurance that if this stops working, there will be some other treatment available.
I get tired faster than I used to, but when I rest I have enjoyable sedentary activities. I love embroidery and recently embroidered an angel and a devil on my t-shirt. It reminds me that my task in life is to balance the good and the bad. Being able to do that helps me remember how good the good times are, and being grateful is something I work towards daily.