Where our intrepid transplant recipient discovers that being a vampire isn't all it's cracked up to be.
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.
Well, readers, it’s Day 116 since my allogeneic transplant. I've now finished my two days worth of +90 workups, spread over a couple of weeks. Normally, I would have been living at the transplant center until Day 90 and had all that work done before I came home. Instead, I was released to come home three weeks early, and had to make two trips, two weeks apart, to get all the work done. The +90 routine at my center includes a whole lot of tests. One was a psychological workup, including mental health, brain functions, and a driving test (to be cleared to operate my car again, which I passed). Not driving for five months really began to wear on me as I felt better!
Other tests included CT scans; even more blood work than usual (a comment you’ll appreciate if you’re a patient — lots and lots of tubes with multiple sticks); a pulmonary function test (checking out my lungs); another bone marrow biopsy (last one was at +30); two transplant doctor visits; and I was supposed to have an eye exam. That last one didn't happen, due to a major backup in the eye clinic. The eye exam is another way to look for symptoms of graft versus host disease.
In my case, all results are A+++++, (some of this is self-diagnosed based on lab results, not yet confirmed by my doctor — a rather dubious practice on my part).
My wife and I also attended a “going home” class with my social worker and several other couples. Since I’d been home on weekends for a month, and full time for two weeks, it was a bit anticlimactic, but the sharing and discussion from other transplant recipients was very useful.
In the area of 'surprise party!' (see That Wasn't The Way This Day Was Planned
), last week, my doctor told me I wasn't getting enough sun! After living like a vampire, in total fear of the sun for months, only going out before 10 a.m. or after 4 p.m., and even then with long sleeves, a big hat, and whole body sunscreen even under the long clothing (denim leaks UV — who knew?), the doc tells me the reason my vitamin D is low, even with handfuls of supplements, is no sunlight. I now have an prescription for 15 to 20 minutes of sun per day. We're way beyond logic here, so we just roll with it. Nice to be able to go down to the mailbox without having to don Dracula's armor!
The Good Doc Ayala keeps telling me how far ahead of the curve I am, while also reminding me anything can happen. This continues the dichotomy that is cancer. Almost every writer who gets cancer posts an article about the duality of life with cancer — living a normal existence while knowing that, in a parallel universe, life is a sort of slow motion train wreck, each step takes weeks or months. Planning for tomorrow, while also planning for there not to be a tomorrow.
I wasn't ready for the feelings I'm having now. We're all used to the "big event" feeling. Months or years getting ready for a life event like a wedding, retirement or major vacation culminate in a huge success and then it's "what's next?" After my first round with cancer and 17 months of treatment from 2005 to 2007, there was always the spectre of relapse in front of me. We hoarded vacation days against the need to bridge disability time, held off on home improvements and vacations to build a cash reserve for expenses and lived the dual life I mention above. I planned for a long life with a long retirement, while at the same time, I planned for a relapse, another transplant and the possibility of failure.
Well, now, I'm cured! Almost certainly. And the "almost" is close enough to "certainty" that we're able to focus only on one path forward ... the good one. I'm left with a habit I have to break. Nine years of thinking two ways, with limited horizons and a negative pall on long term plans, is over. Yet, my daily drive to work takes me right by my local cancer center, so its a constant reminder of the lurking beast, always out there. That pesky "almost."
The doctor who first found my cancer, herself a lymphoma survivor, told me it was five years before a whole day went by when she didn't think about it at least once. I suspect I won't even make it that soon, but I've decided that's not necessarily a bad thing. Major events in our lives, good and bad, shape who we are and what we do. Cancer is a part of my life experience, and overall I'm a far better person for it. While I wouldn't wish it on my worst enemy (which I actually don't have many of, at least from my side of things), the lessons I've learned have helped me grow in great and wonderful ways.
Thus is the theme of my missionary efforts. It's not just winning battles, it's how you fight the war. In a rapid change of metaphors, it really does matter how you play the game, win or lose. People have asked me how I stay so calm in adversarial work situations. Well, my perspective has changed. Little in my daily job is a matter of life and death. Much of it doesn't affect the greater outcome, launching humans into space safely. Where it does matter, it’s about getting the right thing done, not winning over someone else. And mostly, in life, work, play, family and community, it's about the people.
That's what cancer has really taught me. It's about the people. Little else truly matters in the long run.
Besides the other wonderful blogs on Cure Today’s site, I hope you'll also visit my Taking Vienna site. I also recommend a new blog I have recently become acquainted with by T.J. and Jen Sharpe, Patient #1. For cancer patients and caregivers, and melanoma patients in particular, it’s a great resource.