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.
I’m a couple of weeks late posting this update, because I’ve been waiting for a few things to settle down. Now, both unfortunately and fortunately, they have. I’m withholding the name to respect the privacy of the family, but I’ve been doing this transplant process right behind another gentleman who works for the same company I do. We didn’t know each other before, and actually never crossed paths in the hospital or clinic, but through common friends we’ve stayed in touch. Last weekend (8 days ago), he was doing fine. His release date to go home (+90) was April 15. In a horrible turn of events, over just a few days he developed serious acute graft versus host disease, other complications arose, and by Tuesday he was sent home from Moffitt into hospice care. He passed away Friday morning.
The shock for his family, from doing well to gone in just a week, cannot be imagined by anyone who hasn’t experienced it. For me (and this sounds a bit selfish, and possibly it is, but it’s also real) the loss of the man who was my pathfinder came as a stunning blow. I’m doing very well (more on that later) and the thought that I could turn that quickly is frightening beyond words.
After I got the news, I had to run through my mantra I’ve developed since first being diagnosed in 2005. It helps me get re-oriented after a shock like this. My wife, friend and caregiver also went through it with me, as did one of my doctors a few days later. It goes like this:
I don’t have the same kind of cancer he did
My cancer is very unique to me, and is different than anyone else’s
I came into this transplant after 15 months of healthy physical conditioning and healthy living, whereas most transplant patients come in right after firstline chemo, and often aren’t in as good a shape to begin with
He and I had different donors, matches, genetics and regimes
Only a very few people get acute GVHD at a serious level. Not everyone gets it at all, and of those who do, it’s usually mild or moderate, and very controllable.
All of which is absolutely true. And when the reasoning part of my brain is engaged, I take comfort and solace in these facts. When my lizard brain gets involved, none of that means a damn thing. It's fight or flight, survive or die, and it takes a real effort to haul myself around to the front left part of my (usually) very logical personality.
The “up” side of the past couple of weeks is my own progress. Two weeks ago, (around day +42) my primary transplant doctor let me know that, barring complications, I could go home every weekend until full release. He also said he might release me a couple of weeks early (ahead of +90). This was great news! We weren’t able to work it out for that weekend (Easter) which turned out to be good, because we’d have gotten home Friday only to turn around and come back. On Saturday, I woke with a red puffy lump where my central line used to go in the vein in my neck. It had been removed eight days earlier, and had shown no complications until then. So we spent eight hours in the clinic getting tests done for clots, infections, etc. It basically is a minor thing, and has since resolved.
Last week, during my weekly checkup with him, (Day +49), he told us if I kept going like this, in two weeks (+62) he’d send me home a whole month early! This kind of progress and affirmation makes me feel like I’m on top of the world. Coming against the backdrop of my cohort’s rapid decline and loss, it sure put me on the emotional roller coaster, though.
I had a great weekend at home, relaxing in my own town, my own home, on my own couch. I had my first tub bath after two full months of showers (a luxury I’d really missed), slept in my own bed, got to spend time with our wacky dog, and just generally got a dose of mental medicine that made me feel even better than I could imagine. I had to remember to keep all the “Moffitt” rules in place about what I couldn’t do, how to stay safe & infection free, etc. (Basically “do nothing in a very sanitary way.”)
During the drive back, I got another disturbing text. A long time co-worker and two time cancer survivor, who’d been living a pretty high quality of life despite her tribulations, is hospitalized with another serious disease. So the roller coaster descends.
I struggled with what to say in this post. Usually I’m pretty inspired, and they come naturally. With all the turmoil, I kept trying to come up with something to say, and decided to just wait. After I got the latest news, during our drive across the state, I finally figured out what the message is.
When I went through my first 17 months of treatment back in 2005-2007, I noticed something. People would come up to me and tell me very positive things they thought about me, in a way they never would have in a normal situation. I got to joking that it was like going to my own funeral without the need to die first! Up to that point, through being a husband, dad, kids leader, and manager, I’d been gradually learning to open up and share my feelings. Since 2007, up until I relapsed in 2012, I worked harder on that. Over the last 32 months, between cancer and a new work culture from my new company, I’ve completely changed. I now believe in telling people what you like about them, out in the open and freely, at every opportunity. Having cancer twice and being so public about my fight has given me a chance to really realize what’s important.
It’s all about the people.
Work is about people, not things or processes. Commerce (buying and selling) is about meeting people’s needs, not the store. A home is about the family, not the house. Sure, we know that a clean, safe, secure, comfortable home or workplace is important. But not because of the building, but because of the people.
I’m living in a building full of cancer victims, on a floor full of bone marrow transplant patients. We talk every day, sharing our medical concerns, family stories, progress, gossip about doctors and staff, and our wish to be home. We all know, but no one says, that we are in a high risk situation, and the next one to fall could be anyone sitting in the dining room with us.
So here’s my bottom line message: Stop being afraid to tell people what you like about them. Family member you’ve got some strain with? Talk to them. Coworker that always makes you smile? Tell them. Boss that you respect? Say something. It’s never too early but it’s always too late to build up the people around you.
Besides the other wonderful blogs on Curetoday’s site, I hope you'll also visit my Taking Vienna