Multiple myeloma survivor: 5 ways I improved my stem cell transplant experience
GARY S. RUDMAN
When I was recovering from a stem cell transplant after my multiple myeloma diagnosis, the nights were always the hardest. Visitors and caregivers had left MD Anderson until daybreak, and I was alone.
After everyone was gone and the room was quiet, I found five things to be helpful in keeping myself comfortable: making a nest, establishing a routine, staying connected to other people, praying, and visualization. Here’s more about these strategies — and how they helped me through my stem cell transplant.
Make a nest
While nothing can ever replace home, having framed photos of loved ones around can help. Bring these and other reminders with you and set them up on the first day where you can see them. They’ll make a big difference in how warm and welcoming your hospital room feels.
Artwork from children is also great to hang on your closet or bathroom door. When kids know what’s going on with you, they can express themselves in a fun way you might not imagine. Posting their art will be a pleasant surprise to them and bring a smile to everyone’s face when they come visit.
Establish a routine
From the blood pressure reading at 4:30 a.m. to the 10 p.m. lights out, I kept going. My high-dose chemotherapy infusion started at 6 a.m. and continued for three hours. I kept two computers going during that time: one for work and one for home. This gave me the opportunity to keep up with my job and my writing.
I wrote and wrote. Paragraphs became pages, and pages became daily blog posts. I wrote about everything — from lessons learned to information I wish someone would’ve told me before my stem cell transplant — and posted it on social media.
I also exercised several times a day, both by walking laps around the stem cell ward and by logging miles on my road bike and trainer, which I brought with me to the hospital room.
Stay connected to others
You spend a lot of time in isolation after a stem cell transplant. To feel less alone, I’d get out of my room and talk to the staff as frequently as possible. I’d ask them about their lives, their families and their hobbies. It was nice to be able to share stories with the doctors, nurses, and technicians, and doing so gave me a chance to focus on someone other than myself. The bonus was that when those staff members were back on shift again, I’d have something to talk to them about.
Social media is also a great way to spend your time. I used my time in the hospital to spread awareness about multiple myeloma and participate in support groups. A simple search on Google or Facebook can reveal many options, depending on your type of cancer.
For me, the hardest part of being in the hospital was going to sleep. The darkness was always the toughest part. I could never really clear my head — and the nightmares were bad. I’d routinely wake up in a cold sweat, or even in tears.
Usually, I was able to slow my breathing down when this happened. I’d tell myself, “I’m all right and I will get through this,” and I would repeat my motto to myself, over and over, “Never Quit. Never Stop. Not Today. Not Ever.”
If that didn’t work, I would turn to prayer. And believe me, my prayer time did increase during my hospital stay.
On one occasion, I actually worried I was dead. I told myself, “If I wake up and walk to the window and see the sunrise, I’ll be OK.” So I did, and it was the most beautiful sunrise I’ve ever seen. After a few tears, I took a picture of that sunrise. Now, I often look back at that picture to realize how resilient we are.
Finally, I would plan vacations, down to the smallest detail. Then I would look for videos and imagine myself in the vacation spot — and not in the hospital.
Alternately, I would close my eyes and visualize my favorite scenery. And for at least a few minutes, I would be on a boat with my family, enjoying a beautiful South Carolina summer day.
A creative mind can reveal limitless options. You can always put “right now” in a lock box and enjoy a Hawaiian vacation. It worked for me. It can work for you, too.