Leaving the hospital is a huge relief, but there's still lots of work to do.
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.
Assuming no major complications, (there are always
minor complications!), somewhere around Day 24 after transplant you’re ready to leave the hospital. It’s never going to be smooth, because some lingering little thing seems to conspire to keep you there. A new side effect, an I.V. med that needs just a couple more days, or even paperwork snarls with your outpatient facility. Somehow, though, the day arrives when it’s time to leave the hospital. In my case, it was a round the clock I.V. antibiotic than needed another week. The solution was to set up a home health company to bring me a portable infusion pump, a supply of bags of antibiotic, and provide a nurse to teach me how to use it.
Release day is a long and tedious one. There are many hoops that the staff has to jump through, and a constant parade of counselors, advisors, pharmacists, nutritionists, and nurses in and out of your room. Finally, almost always late in the day, you’re released. A wheelchair ride to the front door, and you get that breath of fresh air you’ve craved for nearly a month.
You may stay at a local hotel, apartment, or in my case, the American Cancer Society’s Hope Lodge. No matter where, you will find the move stressful. A complete change in routine, coupled with the exhilaration of being “out” may lead you to overdo. Often, there is grocery shopping to be done by your caregiver, with you along. Or, if they were lucky enough to be able to move into the offsite facility early, you may just find yourself sitting on a couch, tired and happy, back in the real world.
The trap I fell into is a common one: just because you are out of the hospital, doesn’t mean you are magically going to feel better. My head associated “out” with “healed.” Turns out you feel exactly the same, but in a different place. So take it very, very, easy. Don’t try long walks, go out to eat, or shopping junkets. For the first few days, let yourself find a new rhythm. You’ll have to go to the outpatient clinic daily for the first week, including weekends, for labs or doctor visits. You’ll find that outing very tiring, and probably will be the focus of your day. Right now, at my Day +32, 11 days out of the hospital, my routine is simple: 12 hours sleep a night, breakfast, a one-mile walk, a long nap. Lunch, clinic visit, nap. Short trip to the store, or maybe an hour’s work on the computer, nap. Dinner, shower, an hour of TV and it’s bedtime. Not exciting, but very healing.
Progress will be slow and steady. Each day you won’t feel different, but as each week passes, you can look back and see how much you’ve gained. With me, my biggest problem (and a very common one) is eating. No appetite, no hunger, no taste for anything. Eating is a frustrating time of finding some non-objectionable substance to slowly force down. The thing is, eating and exercise put you into a positive healing spiral. The more you eat, and the more active you are (within reason), the more appetite and energy you gain. It was over a week (that’s 21 meals) before any food at all tweaked my interest as possibly something I might want to actually try to eat. That was a bean burrito at Taco Bell, and when I actually sat down to eat it, my comment was “well, that didn’t taste bad.” Each day since, we’ve tried to find something that has even minor appeal. Today, Day +32, I am starting to actually enjoy sitting down to eat, although many foods are still not on the list of things I’m willing to try.
It helps a lot that the clinic staff can show you your blood work, and point to markers that tell how your eating has improved your health. That motivates me to try a little harder, shift more from carbs to protein, and increase my quantity each day.
There is a long way to go, but I’m feeling much better. Had I had an autologous transplant, I’d be within a week of going home. Since I had a donor, or allogeneic transplant, I’m still looking at two more months of the same routine. However, my quality of life gets better each day. Next week, I’ll have a bone marrow biopsy to prove that my donor cells are established and working. I’ll also have the catheter removed from my chest, freeing me from many clinic visits to maintain it, and best of all, full showers without wrapping my chest in Glad Wrap! These things will reduce my trips to the clinic from daily to 2-3 times a week.
I know many readers are following a month or two behind me in their transplant process. The simple message is: Hang in there. The days pass, seeming the same. The weeks pass, and you improve measurable each week. Setbacks may happen, they can be dealt with. The key is to listen to your body for the amount of rest you need, but push it, gently but steadily, in the area of food and exercise.
And try to find a little joy in each day. A phone call with a family member, texting with friends, or sitting outside on a bench watching the birds are markers that help understand the reason you’re doing this.
Besides the other wonderful blogs on Curetoday’s site, I hope you'll also visit my Taking Vienna