AML survivor: What I wish I would have known before my stem cell transplant
You're getting ready to go to the hospital for your stem cell transplant. You've made your list, you've checked it twice. You're ready.
But there's nothing like the wisdom that comes from experience. I underwent an umbilical cord blood transplant as a part of my acute myeloid leukemia (AML) treatment. Here are five things I wish I would have known before checking in.
1. Bring walking shoes.
You've heard this thousands of times: You'll walk a lot with the nurses. This is no exaggeration.
Each time you complete a lap, you'll get some sort of paper recognition from a nurse. Display these tokens on your door.
Many times when I felt too tired or sick to walk, I looked at my door and saw what I had already accomplished. This helped me feel better, either by reminding me of my strength or reassuring me that it was OK to take a day off. Plus, the signs on your door may help motivate other patients.
2. Bring calling cards.
If you have business cards, bring them. If not, cut some paper and make your own.
I know you're going into the hospital, not a business convention, but you'll want a way to remember and get in touch with the patients you meet. Your fellow patients get it. They know what you're going through. Know how to find them. You will be so happy you did.
3. Don't compare your stem cell transplant recovery to another patient's.
Don't judge your success on other patients' progress or hurdles. It's easy to judge how you're doing based on what you see or hear other patients doing.
But it's important to remember everyone's circumstances are different.
My transplant required cells from two different umbilical cords, so my engraftment took longer than others. I was frustrated when I saw patients who had transplants after I did leave the hospital before I was discharged. But I healed in my own time, and that's what matters.
4. Say no to online search engines.
Bring your phone, laptop or tablet, but use it only for entertainment. While it's tempting to try to find information about your transplant online, trust that your nurses and doctors have it under control. After all, that's why you came to MD Anderson. They're the best.
5. Remember this will pass.
Sometimes I couldn't help but wonder: Will I ever get well? Will I ever be healthy? Will I ever feel good? Will I ever reclaim any sort of life and enjoyment again?
Seeing other survivors helped me know that there was an end in sight and returning to a healthy, fun life was possible. Now I can be that person to other patients.
So remember, many people have done this, and you can do this, too.