Leukemia Survivor

Survivor pays back by navigating care of cancer patients

Sean Hunt, RN, BSN, OCN, is a survivor of acute lymphocytic leukemia (ALL) and acute myeloid leukemia (AML) who chose his profession largely because of his personal experience with cancer. He is an Oncology Nurse Navigator at Marian Cancer Care Services in Santa Maria, California and works daily with cancer patients. Sean also speaks nationally about his cancer journey and participates in long-term survivor studies. He and his wife, Valerie, live in Nipomo, California and have twin boys.

 

I tell my newly diagnosed patients that you will come out of this process on the other side a changed person — for better or worse. For me, when I was first diagnosed, I was angry. I was a typical 24-year-old who was going to conquer the world, so get out of my way. And being young and dumb, I didn’t have the slightest idea about leukemia.

I was in college at the time and was so tired that I had trouble walking from my car to school. I went to see my doctor — thinking I had a sinus infection. They drew blood, gave me a prescription and sent me home with pain medication. Within two hours, the office was calling me back frantically and from that point, my life changed forever.

My blood levels were so low that I was admitted to the hospital immediately. They repeated the tests and gave me rapid blood and platelet transfusions, and within 48 hours, I had my first of 18 bone marrow biopsies over the next 17 years. I also quickly gained a medical oncologist, who took my mom, dad and brother aside in the waiting room and told them they suspected I had ALL.

So the same day as my doctor’s visit, I was diagnosed with leukemia, and I did not know enough to be scared, but I was scared. My doctor liked my oncologist, so I jumped on for the ride. I was going to do anything they asked me to do in order to beat this. Fortunately, I didn’t find out until later — the doctors had initially given me a 30 percent chance of making it.

I began 10 months of treatment with multiple chemotherapy regimens that included CHOP (cyclophosphamide, doxorubicin, vincristine and prednisone), methotrexate and others. Additionally, I had radiation to my skull and central nervous system. Three months into my treatment, additional blood work indicated that I also had AML so my doctors modified the plan. I now would need a bone marrow transplant, coupled with total body radiation and methotrexate chemotherapy.

The bone marrow transplant was a lengthy ordeal, partly because we had to harvest my own cells. My dad was with me, which was great. Being a typical Irishman, he voiced all the possible difficulties that could result from having leukemia. I’m very obstinate and if you tell me I can’t do something, I’ll do my best to show you otherwise. I think my dad instinctively knew that and he was firing up my determination. One of my doctors later told me it was due to sheer stubbornness that I didn’t die.

I had my bone marrow transplant on May 3, 1995. While the results were excellent, the next few months were rough. I had been in remission since my first round of CHOP, but because I was 24, my doctors wanted to blast any potential leukemia cells, and they thought my body could take it. I had terrible sores in my mouth after my treatment finished. I couldn’t eat anything solid for months, so I lived on Gatorade and chicken noodle soup broth. When I was diagnosed, I weighed 215. By the end of the summer, I was at 140.

As I slowly recovered over the next six months, I reflected on my life and realized what I wanted to do was to “give back.” I wanted to help people with cancer, because there were so many who had helped me.

I decided to become a nurse, and I love what I do. I now help guide cancer patients every day, and it’s all about paying back. I have continuing physical and mental challenges, but then I wasn’t expected to make it to 40. I am still going strong despite a hip replacement two years ago, as a result of one of the side effects of treatment. You have to keep a good outlook — poke fun at your situation and have a good laugh, which I still do with a group of friends who have stuck with me through it all.

I have now been in remission for 17 years, and while I wish I didn’t have this perspective, I am a better person because of the journey. I began this process angry and naive, now I am thankful and the wiser for it.

 

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