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I’m Learning to Live With Chronic Cancer

The fear cancer survivors have should never be underestimated by oncologists.



Treating the emotional part of having cancer is just as important as treating the physical part of it. You can’t ignore the human factor of what it means to live with the uncertainty of chronic cancer.
— Amanda Blair

I was feeling a bit more tired than usual as the Christmas holidays approached in December 2012, but I chocked it up to the frenetic pace of the season and keeping up with caring for my two young children, ages 4 and 12. I had none of the other typical warning signs of chronic myeloid leukemia (CML): night sweats, fever, and weight loss. I was, however, experiencing severe pain in my side and back, which sent me to the emergency room on Christmas day; it later was determined to be caused by a kidney stone making its way through my urinary tract.

As I waited for the blood and other laboratory test results to come back, a doctor came to tell me that my blood test result showed a white blood cell count of 150,000 cells/mm3 (way beyond the normal range of between 4,000 and 10,000 cells/mm3) and that I had leukemia, although he wasn’t sure which type of the cancer I had. Additional diagnostic tests revealed it was CML. My grandmother had died the year before from AML, and I wondered whether I would also soon die, terrified at the prospect of having to explain to my young children that I had cancer and how the disease might impact their lives. The possibility that I might have to leave them was the hardest part for me to accept during my diagnosis, and it remains so today.

Confronting Fear

I was initially treated with the tyrosine kinase inhibitor dasatinib ­(Sprycel) and later switched to twice-daily doses of nilotinib (Tasigna), which I still take. Although my CML is not in remission, it is stable and at the moment manageable. I have minimal side effects from treatment—mostly muscle pain and fatigue—and I’m grateful I’ve been able to live a fairly normal life over the past 4 years and to be here to watch my children grow and thrive. But, I admit, having a cancer diagnosis has made me a more fearful person, even as I have become more appreciative for what I have.

I know that treatments such as nilotinib are allowing many CML survivors to live many years after their diagnosis. I’m also aware that some survivors become resistant to the drug; I’m confronted by that thought every 3 months when I see my oncologist for a follow-up visit and wonder whether this is the day I learn my cancer is progressing or it is still stable.

The fear cancer survivors have is something oncologists should never underestimate. Treating the emotional part of having cancer is just as important as treating the physical part of it. You can’t ignore the human factor of what it means to live with the uncertainty of chronic cancer.

Living a Joyful Life

I’ve become a more sensitive person since my diagnosis 4 years ago. Special occasions such as birthdays, anniversaries, and holidays are more precious to me, and I revel in their celebration. Although my cancer will always be a source of fear for me, I’m getting better at managing that fear and living my life as fully and joyfully as I can. ■

Ms. Blair lives in Jacksonville, Indiana.



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