I thought that after 100 days post-transplant, I would feel great and be back to my normal life. Thinking back, I have no idea why I thought this was true. The first 100 days are the most critical, because that is when major events are more likely to happen, including graft failure or acute graft-versus-host disease. I am well past the 100-day mark, and while I am definitely improving, I still have a long way to go. I was surprised to learn during my survivorship counseling session at three months that most patients don’t start to feel “normal” until a year post-transplant. Indeed, I am revising this article at 11 months post-transplant, and I’m not yet myself. I’m trying to live by the same advice I’m sending out to other patients—give yourself grace and time to heal.
Return Hospital Appointments
My husband read the second part of my blog about staying in the hospital and had only one comment: "It’s not accurate enough, because you didn’t call it a living hell. " My memory of being in the hospital is very fuzzy! I do recall being grateful and extremely relieved to be released from the hospital, even if it meant returning frequently for check-ups. Every hospital group is different. My post-hospital schedule involved going into a specialty ambulatory treatment center at the hospital for blood products, fluids, IV magnesium, and any other needed electrolyte replacements. Initially, I went in every day but after a week or two, I transitioned to a twice-a-week schedule. During those visits, the medical staff checked my vitals, basic blood counts and tacro levels. This created a level of familiarity with my new team that gave me a comfortable space in which to ask questions—the important ones and the dumb ones. While on this twice-a-week hospital schedule, home healthcare delivered daily infusions of fluids plus magnesium that we ran on our own through my CVC.
Once I was declared stable, I graduated to seeing my original stem cell team back in the clinic side of the hospital on a weekly basis and later had my CVC removed around day 90. This did not happen until I was able to tolerate magnesium tablets instead of IV supplements and the team was confident that I would not need any blood transfusions. The CVC removal was a breeze; it was nothing like the CVC insertion. I graduated to seeing my clinic team every two to three weeks for monitoring and routine blood work and now go in every eight to 10 weeks or so.
I also had more extensive testing performed around days 30, 60, 100 and 180 including pulmonary function tests, bone marrow biopsies, chimerism blood work, and mutational studies. I’m expecting a similar round at the year mark, just postponed a bit due to the coronavirus.
Living Locations and Conditions
Every hospital group has different requirements for patients’ living locations after hospital release. I lived near the hospital (within 10 minutes) for thirty days after my hospital release, and then received permission to return home (within 60 minutes) for the rest of my recovery. I don’t have small children, but it's my understanding that patients can live with their family of whatever ages so long as everyone is healthy and establishes clean living patterns.
Many of the restrictions imposed by the hospital remain imposed after being released from the hospital. Post-transplant patients need to be exceptionally careful in public and wear a face mask everywhere. Frequent handwashing and the liberal use of liquid sanitizer are critical safety precautions. Avoid young kids, sick people, large crowds and restaurants during peak times. Dietary restrictions depend on the physician; some impose a neutropenic diet while others do not. Personally, I still avoid hard-to-clean fresh fruit (raspberries, strawberries, etc.), restaurant salads, uncooked meats like sushi or fondue pots, buffet lines and potluck events.
Lung problems are some of the hardest infections to eliminate. Restrictions against doing yard work and housekeeping aren’t in place to keep patients inactive; they’re to help eliminate the amount of dust and bacteria that enter patients’ airways during these activities. In public, face masks act as patients’ number one barrier to the common cold and various flu strains. Pre-corona virus, I wore N95 rated full face masks as opposed to the looser fitting surgical masks anytime I was in public. Post-coronavirus, I just stay home.
Chemo makes food taste terrible. Some patients are better than others at pushing through the nastiness to eat enough to sustain their body weight. I was not one of those patients. I refused to eat anything that tasted metallic (most foods), felt oily in my mouth (butter, cream and olive oil in particular), or had a pervasive smell (all other foods). This left me with a skimpy diet of some sweet cereal with lactose-free milk, applesauce, simple popsicles and fruit smoothies. I lost weight weekly.
My diet eventually expanded to include high-protein liquid supplements, broth and rice, eggs, oatmeal and baked potatoes. Between my limited intake of calories, refusal to eat nasty-tasting food, and ongoing bouts of nausea, I still lost weight weekly. I’ve since abandoned pretty much all of these foods (enough already) and eat small amounts of whatever my family is eating. All I can say is that food for me is a real struggle. I met with a nutritionist during some of my early clinic visits and her recommendations were very helpful. If you’re struggling with food, speak up and ask for a nutrition consult. I’m 11 months post-transplant, and while I’m still skinny, I finally stopped losing weight.
Before leaving the hospital, we ordered a big pill box separated into seven days with medications broken down into three separate times a day. The pharmacist carefully went over the medications before discharge and gave us a print-out to follow at home. My medical team changed the medication schedule as needed, making it critical that we double-checked the pill box and schedule after every visit. My daily medications include anti-rejection drugs and magnesium supplements, as well as anti-viral, anti-fungal, and antibiotic medications.
Starting around the 6-to-12-month mark, patients need to be re-vaccinated. This occurs during clinic visits on a schedule laid out by the survivorship team. Every family member also needs to receive a yearly flu vaccine to help create a safe-zone bubble for patients.
Setting Reasonable Expectations and Quarantining at Home
There are numerous articles out there on stem cell patients’ “new normal” life post-transplant. Check out websites from Be The Match, The Leukemia & Lymphoma Society )LLS) and active transplant hospitals. These sites and others are full of great information for helping all cancer patients return to an active life.
I used to get asked "so what do you do all day"? In this post-coronavirus world where suddenly a large portion of the population is staying home, I get asked for tips on staying home without going crazy. Everyone who knows me knows that I am not good at sitting still. “Relaxing” for me used to mean accomplishing something outside of work. My new normal involves a lot of quiet time reading, doing puzzles, watching baking shows, corresponding with friends and writing these blog posts. I repeatedly remind myself, and my family reminds me, that this is only temporary. It may not be what I’m used to, but it’s what my body needs right now. I can’t lie—it drove me crazy at first, but I settled into my initial period of rest and am more accommodating of this second round of quarantine life.
For everyone recovering from a transplant, assisting another through a transplant, or just having to quarantine at home, here are some suggestions for getting through the day.
Try to get up around the same time every day and go to bed around the same time at night. I’m not talking about a strict schedule—I feel better getting a consistent amount of sleep and I sleep better on a regular routine.
Get up and get dressed every day. It’s too easy to stay in pajamas. Treating the day like the day gives me a sense of normalcy.
Regular exercise promotes good health. Get up and get moving. At first, I could only tolerate short walks around the block. Then my stamina increased to permit longer walks. Post-coronavirus, I walk every day, but I am very careful about where I walk in order to avoid crossing paths with others.
I read, a lot. I work puzzles while listening to a podcast or audio book. Once the smell of food stopped making me sick, I started cooking something every day. Somedays it’s full meals for the family; somedays it’s just cookies.
Try to do something creative. Turns out, I don’t like to color, I can’t carry a tune, and there are only so many pictures I can take of my dog. I can crochet and sew a little. So, I make projects and mail them out to friends. I don’t even care if they like the projects or give them away. It gives me something to do with the more creative side of my brain.
Reconnect with friends and family. Sometimes they won’t reach out because they are afraid of bothering you, or they don’t know what to say, or they’re hunkered down in their own life. Be the person who reaches out via text, call, online meeting, whatever.
Sorry, but I have no suggestions for home-schooling or corralling kids. That’s rough.
I stopped measuring my worth by how much I accomplished in a day. This is a very hard, but crucial lesson. Give yourself a break.
Remember too to be flexible with your recovery. It’s an up and down journey, not a straight-line path. After about three months post-transplant, I significantly increased my physical activity and public outings. I figured I was doing well since I had not suffered from any acute graft-verus-host problems or any other serious ailments. Ondansetron (Zofran) held the nausea at bay and occasional doses of Imodium helped keep my guts under control. Then around 110 days, BAM, I succumbed to the norovirus caught during one of my outings and ended up back in the hospital. I left the hospital four days later starting over weak as a baby.
I am going to repeat here what I said initially—give yourself grace. The chemo and hospitalization may have been the “hard” part of the transplant process, but recovery is a struggle too. Find someone who you can be honest with and talk through your good days as well as your bad days. Eventually, you’ll realize the good days have overcome the bad until one day, the bad days will be left behind on that roller coaster ride while you’re off enjoying life. Until then, I wish you all the best.
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.