Kevin finally understands his place in the cancer universe.
Kevin Berry is an 13-year mantle cell lymphoma survivor, in his third remission. He works on Human Spaceflight programs, is a freelance writer and editor, and supports newly diagnosed patients through his ministry, Taking Vienna. He lives in Central Florida with his wife and adult children.
One of the real frustrations with long, planned hospital stays is that you change your entire routine of life, and you’re really in control of nothing. At the end of a particularly trying day early this week, I tried to just sit and puzzle through what was bothering me so much.
Well, first, all cancer patients are used to the “out of control” feeling. Your own body betrayed you, and your life is in the hands of others. Still, many of us (including articles by other CURE contributors) talk about this duality. There’s Cancer Kevin, doing chemo, radiation, and planning time off from work for “side effects day.” Then there’s still Regular Kevin; husband, dad, boss, neighbor, doing the same old things.
I realized that going in for this transplant, there’s not much Regular Kevin left. Everyone is far away, and while calls, texts, and visits are great, they’re still to Cancer Kevin.
Second, the transplant process, while overall very consistent, is also very individual. Some get mouth sores, some don’t. Some retain fluid and have breathing problems, like I did, and some don’t. Things happen with a span of a few days, but not the same day for everyone.
The third, of course, is just the hospital environment. Your room is a freeway for dozens of people each day. Sometimes there is a line to talk to you or give a treatment, or you might go two hours without seeing anyone. If you try to set up a daily schedule, say, to shower right after breakfast every day, the odds are virtually zero you’ll be able to do that, and might wind up showering in the afternoon, wearing yesterdays clothes all day again, or maybe using up a whole extra set of laundry.
Staff will try to respect your wishes, but it’s hard on them. Each patient’s daily needs change wildly. One day, I might need little care except changing I.V. bags. The next, a crisis hits and consumes a nurse all day.
So, your disease is out of your control. Your treatment is driving your body places the doctors need it to go, but you sure don’t like it. You have no appetite, no taste and no hunger, but you need to eat. You have no energy, but you need to walk. And then, after forcing yourself through your self care, along comes the surprise!
I’d just finished fighting my way back from a bad infection, inability to breath, and lots of fluid retention. I got up with a bit of energy, planning to get back to walking, doing computer work, and just generally having a “normal” day. That’s when the nose bleed hits. In a patient with no clotting, this is a serious event. The nurse worked with me full time for six hours to control it, get platelet transfusion, and get me in a stable situation. When things finally settled down, around dinner time, the name of this post came into my head, and thinking began.
Today, I actually had no unplanned events, the hospital pushed me around to meet their short staffing, and I was OK with all that. I now have a new paradigm about control. Today, I will attempt to do these things, and if I do, great! If not, then tomorrow is another day.
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