Life after cancer calls for yet another new normal.
Kevin Berry is an 11-year mantle cell lymphoma survivor and undergoing his third bone marrow transplant. He works on Human Spaceflight programs, is a freelance writer and editor, and supports newly diagnosed patients through his ministry, Taking Vienna (www.takingvienna.blogspot.com). He lives in Central Florida with his wife and adult children.
About the artist: Andrea Suarez lives with a chronic illness. She exemplifies a trait that most long-term patients master: living a “normal” life while coping with the limitations imposed by her disease.
Andrea Suarez's "Valley of Light" Photo courtesy of Kevin Berry.
After the six-month milestone, which I chronicled in 180 Days From an Allogeneic Stem Cell Transplant
, the next major event for a transplant patient is the one-year anniversary. I celebrated this special day by running another 5K race, turning in the best time since my pre-cancer days a dozen years ago. That’s a pretty good summary of how great a transplant patient can feel!
I have been blessed with a very smooth and rapid recovery. As indicated by my race brag above, I haven’t felt this good since before the onset of my cancer and other illness over a decade ago. Before cancer, a precursor illness knocked me down for a long time. For a 58-year-old man to suddenly have the energy and vigor of a 45-year-old, the change is quite dramatic.
One of the five standard articles all cancer bloggers crank out, detailing a feeling common among cancer survivors, people with diabetes and other patients with chronic disease, is about “the new normal.” Somehow, while physically disabled or emotionally damaged, we seem to find an equilibrium in life. We work, we parent, we play, but we also sit in chemo sessions, struggle with side effects and see surgery as just another event to work into a busy schedule.
Well now, here I am, on The Other Side of the Valley
. My one-year checkup was “typical.” We did a bone marrow biopsy, blood work, scans, exams, vaccinations, yadda yadda. I have done this so many times that I had a routine for the two-day test marathons. Except I don’t need the routine anymore! This was the last time.
Besides the “normal” good news, that I continue to be cured and have avoided serious graft against a host disease, I got another special bit of joy. It was time for the port to come out. If you aren’t a cancer patient, you probably have no idea how much we hate these things. Even when cured or in long-term remission, it still sits there as a bump on the chest that needs monthly care. It is a constant reminder that you are still technically a patient. Having it out is a public and significant symbol of being done!
The thing that surprises me is that I haven’t read many articles about what happens when your new normal of living with cancer turns into another new normal of living after cancer. I now have such a sense of freedom to do long-term planning without that little “but …” thought constantly appearing.
We don’t understand the physical, mental and emotional toll that long-term, grinding stress has on the human body until we’ve experienced it. Lots of people have stress for reasons that aren’t medical in nature. I can’t say how many experience the sudden elimination of that stress and the lift it gives you. But in my case, between being mentally freed and physically renewed, I can say that it is a feeling of freedom that I never dreamed of.
How can I put this into words? The best I could do was bad haiku. So, for those of you still in the valley or just seeing the light, I hope you someday will feel inspired to write your own bad poetry.
I have no chemo port
Cancer is gone, never back
Again I have hair
God bless you all. Hang in there. Goodness can happen to you!
Besides the other wonderful blogs on CURE’s site, I hope you'll visit my Taking Vienna
site. I also recommend T.J. and Jen Sharpe’s blog, Patient #1
. For cancer patients and caregivers, and melanoma patients in particular, it’s a great resource. I also encourage readers to visit the Be The Match
site to learn about registering as a potential stem cell donor.