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.
A few weeks before hospital admission, you undergo the cancer center's version of the Navy Seal hell week. At Moffitt they schedule three days of appointments, six or more each day. Some of them are counseling in finances, insurance, nutrition, social services and tons of paperwork. Others include the most comprehensive set of blood work ever (cancer patients know about giving blood. When I was told I was having a "mega panel" the phlebotomy techs actually said "ooh, my."). Twenty tubes. There was a MUGA (multi-gated acquisition) scan of my heart ; a full body CT; and a really interesting pulmonary function test in a phone booth-like device. There's a pretty thorough set of psychological testing, meetings with nurses, doctors and physician assistants.
The week before transplant, there's another meeting with the transplant doctors, where final decisions about treatments are made. In my case, the doctor, after careful consideration, changed my protocol to one used successfully for 10 years at another center, which he is introducing at Moffitt. In certain cases, this combination of chemo and transplant drugs has shown great success in reducing chronic graft-versus-host disease.
To step back a bit. After an allogeneic transplant, patients may develop either or both of two different forms of GvHD. One type, called acute, happens around 60 to 90 days, and may be very controllable and overcome within a few months. Another type, chronic, may occur much later and last for a year or more. So the chance to reduce this possibility is worth it.
The last thing, usually done the day before admission, is placement of a central venous catheter, in the chest. This line, with two or three ports, goes under the skin, over the collar bone, and into a major vein leading to the heart. This lets medicines go quickly into circulation, and eliminates the restriction of an I.V. needle, so the stem cells aren't damaged on the way in. This procedure was done in a procedure room, under a twilight anesthesia. I was sore afterwards, but by the next day it wasn't too bad, and within a few it was just part of my body. Granted, a dangly annoying must-be-protected-in-the-shower part, but still just another thing to deal with, like a chemo port but on the outside.
The Early Days
My admission was on Day -5, and the first chemo that night. Each day up to Day -2 is pretty much the same. Early morning rounds from a passel (gaggle? pod? herd?) of doctors, vital signs every four hours including all night, and eat three meals (shout out to Moffitt's kitchen, they've stepped up the hospital food game quite a bit since I was here eight years ago.) What is different for me, compared with last time, is the strong emphasis on walking. They encourage people to walk at least a mile a day, trying for two. Since the unit is a short square, it takes 11 round trip laps of the hallways to make a mile. The theory is simple: people who are up, out of bed and moving do much better than those who spend their days laying down or sitting. Even if walking is out of the question, which certainly can happen, getting out of bed and sitting up is still an improvement.
Blood counts are, of course, monitored carefully. As the chemo proceeds, white counts begin to drop as marrow stops functioning. Red cells live longer, and platelets even longer. There's a whiteboard calendar in each room where treatment plans, blood counts and major events are planned and logged so the patient is very well informed about their progress. It's a very consistent process, with most patients hitting milestones to the day, especially before the transplant.
Somewhere around Day -1, things start to get tougher. Blood counts are down, chemo infusions are done but really starting to kick in. Appetite goes away, nausea and fatigue start to really show. It's very important during this period not to be a hero. Little things that in normal life you'd just shrug off, could be indicators of big problems to come. Nurses will tell you it's far better to shut down an issue early, than chase along after a symptom or problem when it's grown into a real issue. Over the past years, I've had to bludgeon myself with my own motto: "I NEED to be a hypochondriac!"
For me, Day -1 is cataloged as a day of rest. Chemo over, only necessary medications, getting ready for the Big Day: Transplant.
Late on the night before this was written, I had what should be my LAST chemo session. After nine years, 48 chemo sessions, 24 radiation treatments, 18 months of oral treatments, and an autologous transplant, I realized that, with a very high likelihood, I might actually be cured of this horrid disease.
To those of you just starting down this road, please know that there are no certainties in cancer. But, millions of people have walked through the valley of the shadow, and emerged into the sunshine on the other side. God willing, and with stunningly hard work on your part, you may see the warm light again. It isn't easy, but it can be done.
I hope you'll also visit my Taking Vienna