How My Father's Battle With Leukemia Brought Us Closer Together
Yes, I knew I was getting older. Yes, I felt that at some point, I would be faced with my parents having a debilitating illness. But still, when it happened, I was shocked and had to quickly adjust my life for my father. Let me back up a bit.
During spring break 2012, we went on a family cruise with my children, in-laws and parents to celebrate my son, Andy’s, high school graduation. During the cruise, my father noticed a swelling on his neck that was rapidly growing. He did not realize at the time this would change his life and ours, and begin an incredible journey with cancer and a lesson in compassion.
When he returned home, dad’s primary doctor sent him to an otolaryngologist, who removed the two swollen lymph nodes in his neck and sent them for a biopsy. The diagnosis came back a few days later — small B-cell lymphocytic lymphoma (SLL), an uncommon, indolent form of leukemia that is very treatable with chemotherapy resulting in remissions of many years — sometimes 20 or more.
His primary doctor referred him to a hematologist/oncologist for treatment, and because he was otherwise in good health and 69-years-old, they opted for an aggressive six-month course of chemotherapy with three different drugs to put him in remission.
Dad gathered the family around and explained his course of treatment and some of the risks. My sister had been through a similar course of chemotherapy for breast cancer two years earlier with a great deal of emotional support and compassion from mom and dad, and she was very empathetic to dad’s situation and helped him cope with his fears of treatment and its side effects. The odds of serious side effects were very low, but we all knew in the backs of our minds that they could occur.
Dad had a chemotherapy port inserted in his chest and began treatment that summer. Mom bought dad an iPad to keep him entertained during his long chemo sessions, and that was when he discovered the value of social media in treating cancer.
As with my sister, but unlike many other cancer patients, he was very open about his condition and published his diagnosis and progress with treatment on social media so friends, family and neighbors could get the latest news. But for me, I was going through my own bout of anxiety and depression. How could I help him?
Dad was bolstered by the compassion and empathy he received from family, friends and neighbors and became an exemplary cancer patient. The two nurses in his infusion center were very busy treating up to nine patients at a time. Because he had minimal side effects from his treatment, he would often get up from his chair and talk with other patients to help ease their own anxieties.
About halfway through his treatment, he said to me: “We all learned fast. We all feared that neighboring patients were terminal when they didn’t come back after a chemo session. One time, the patient next to me started exhibiting chills and fever. With her permission, I held her hand for a half hour until the chills and fever subsided. Her response to my therapy was a whispered ‘Thank you.’ We never saw her again, and we all understood why. We asked the nurses and they confirmed our suspicions.”
This was taking a toll on all of us and I still felt useless to helping my father. But dad, ever the trooper, said he found nothing anywhere near as rewarding as helping someone find peace in their final hours. After four treatments, dad’s cancer was in remission by October, and he received two more treatments to ensure it stayed in remission.
Because of his exemplary response to treatment and his compassion for others, his nurses nicknamed him “Superman.” But his journey was not over.
And then it happened.
After completing dad’s successful treatment in December, mom and dad scheduled a trip to Las Vegas in January to celebrate his 70th birthday with friends and family from the area. When they returned, dad was feeling tired and easily out of breath, so he scheduled a blood test with his oncologist.
The next day his oncologist Dr. C. called, and said, “Come to my office immediately. You are in serious condition and need to go to the hospital for a blood transfusion.” Dr. C. explained in the office, “You’ve had an unusual delayed side effect from your chemotherapy. You not only have hemolytic anemia (which occurs in 20-30 percent of those undergoing dad’s type of chemotherapy), but you also have Evans Syndrome (extremely rare). Your immune system is attacking both your red blood cells and platelets.”
“You are a very lucky person,” he said. “You just put your heart through a stress test and you survived.”
The next week Dr. C. started him on heavy doses of steroids and more chemotherapy to suppress his immune system, along with monthly blood transfusions to raise his red blood cell and platelet levels. When this treatment did not prove effective by March, he sent dad to Johns Hopkins University Hospital for further diagnosis and treatment.
In June 2013 Dad went through a difficult six-and-a-half-hour laparoscopic surgery to remove his spleen after receiving immunizations for a number of infectious diseases. He survived the surgery and his blood levels were back to normal within a few weeks.
This was not the only problem. The steroids made dad depressed and bipolar and his personality alternated between that of a meek little boy and an omnipotent adult who thought he was God. He would often exhibit violent behavior and mom would have to call in neighbors and family to help calm him down.
It was time to find out how I could support my father.
Being the closest family member by distance, mom called me one night and said that she thought dad wanted to hurt her and she wanted to have him committed to a psych ward at a hospital. I rushed over to their house.
I found what I could do for my dad. I had just learned my recover techniques from stress, anxiety and depression. I sat him down, even though he was panting and talking gibberish. I had never seen him like that. I used what I learned in therapy to calm him:
Breath deep from the belly and close your eyes.
Try to be still and envision a color in the center of your forehead. Now turn it white.
Stop talking for a minute and just listen.
Think “I want to be calm, I want to be free.” Say it over and over in your head.
I held his hands and as he calmed down, I hugged him. He took something to help him sleep and calmed down. I would often go over to talk with him, hug him and tell him how much I loved him, and he would calm down within a few minutes, and we could talk things out.
Psychiatric medication helped alleviate his bipolar condition and helped him sleep, but it was seven months before he could be weaned off the steroids because his adrenal gland could have shut down and killed him if he had been suddenly withdrawn from the steroids.
By September 2013 dad was back to normal. He hiked and exercised to get his strength back. We often hiked together for four or five miles on weekends and developed a father-son bond like we had never had before. In my childhood, we were always distant. But this shared experience actually brought us closer together.
After a few months, my dad began to recover. He also trained as a counselor with the First Connection program, which pairs newly-diagnosed cancer patients and their families with survivors, who help them get through the fears of treatment and the emotional trauma all cancer patients and their families experience.
He did not need referrals from LLS, as he was very open about his own experiences on social media, and friends, family and neighbors would come to him for help. He would hug and cry with them and became more compassionate with others and empathetic to their circumstances than he had ever been before.
And then it happened again.
In early July 2017 dad started getting short of breath and he scheduled a visit with his primary physician. He had a blood test a week before his appointment, and his physician posted the blood test results on his portal for dad to see. He looked at the blood test results and knew something was wrong.
But what happened after that was totally unexpected.
Dad checked himself into the emergency room on a Saturday with a copy of his blood test and told them what was happening. They gave him another blood test and immediately called Doctor C. with the results. Dr. C ordered a blood transfusion and a marrow biopsy, and dad spent the weekend in the hospital until he completed his marrow biopsy on Monday.
Dr. C. called mom and dad into his office on Tuesday and said, “We have your preliminary biopsy results, and I’m not going to beat around the bush. You have AML (acute myeloid leukemia).”
Dad’s cancer had morphed from the most indolent form of leukemia (SLL) to the most virulent and aggressive form of leukemia (AML).
Mom and dad had lost two close friends to AML in the past two years. This was not the news any of us wanted.
I stood by his side again and he worked through his next battle, which again showed his resilience. He is now a five-year cancer survivor, and his prognosis of surviving for another five years or more is very good.
One of the patients who dad counseled is an engineer like my Dad and is now in hospice, and Dad likes to paraphrase what he said about his condition: “I’m an engineer and I continue to drive my own train, and it is only he who will decide when my journey ends.”
There are 14 million people living with cancer in the United States today, and due to the miracles of modern medicine and large doses of compassion and empathy, dad is still one of them.
We took a short walk the other day and talked about our feelings — nothing that would have ever happened when I was young. More so, I am finding those that call him “Superman” were right.
He truly is my hero through his cancer, and I’m glad the journey — no matter how hard — has brought us closer.
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Thinkstock photo by MariaDubova