In the world of bone marrow transplants (BMT), everything is measured in terms of how many days have passed since my “new birthday,” the day I received the life-saving stem cells from my anonymous donor who we affectionately call “Mr. International.” The day of my BMT was March 19, 2014, and that day is called “Day Zero.”
For the first 100 days, there are a lot of serious restrictions placed on people like me who have received bone marrow transplants; the body is very weak, tired, sensitive, prone to infection, and trying to adjust to an entirely new and foreign bone marrow and blood system.
Today, I’m at Day 50 and living with my Mom near Stanford Hospital, with appointments at the hospital twice a week. I’m required to basically stay inside the rented townhouse all the time, except for hospital appointments or when we’re in the car. I can go outside for walks but only at dusk (as I need to completely avoid sun exposure). Anytime I’m out of the townhouse I have to wear a big, bulky HEPA filter mask to protect me from microorganisms (bacteria, viruses or fungus) that can circulate in the air. Mostly, I’m in isolation with my Mom (my amazing caregiver) and I look forward to short visits from friends and weekends with my partner Andy Peri. To pass the time I read, blog, watch movies, meditate, do yoga and nap (I’m very low energy still). Soon I’ll be getting an indoor cycle from Saris which I’m really excited about, and I have aspirations about learning to play piano.
However, things will change (as they always do). I’m quite excited that as of today, I’m half way to 100 days! Here is what I’ll be able to do starting Day 100, which is June 27:
- I’ll be able to go home to Marin! Stanford is nice, but I miss Fairfax.
- I’ll be able to go outside without the HEPA filter mask, as long as I’m not on a dirt trail
- I’ll be able to open windows in my house (right now the windows have to stay shut, which was really hard during the recent heat wave).
- I’ll be able to eat at a restaurant, but not yet a buffet or pot luck.
- I’ll be able to go to public locations that are not too crowded, like grocery stores and parks.
- I should be able to go dancing! (still pending a discussion with my doctor, I’ll be begging…)
- I will be able to drive again (which has not been a big deal for me, as I don’t own a car anyway and prefer when others drive).
It will be wonderful to have these new freedoms after I reach 100 days this summer, but I’m still going to have to wait quite some time to do a number of things that I love:
- I will be unable to go in a hot tub or public body of water until I’m off immunosuppressant medications, which is probably a year from the time of the BMT.
- I will need to continue to avoid the sun as it can trigger graft versus host disease (where the donor cells attack my cells). I’m looking into buying some SPF 50 clothing and hope I can get an umbrella for my bike, but I’ve already seen how sensitive I am to the sun, so expect to see me more at night.
- I won’t be able to go on an airplane until cleared by the doctor – this is usually about 12 months after the transplant, maybe sooner if I’m lucky.
- I won’t be able to go back to work until cleared by the doctor – I’m hoping to start working again in January 2015, but they often say to wait 12 months. It’s different for each person, some never regain the energy to go back to what they were doing before.
- I can’t go on any dirt trails or paths for a year unless I wear my HEPA mask (so I’ll probably be avoiding these situations until I can be mask-free).
- After 180 days, I can take some vitamins, herbs and nutritional supplements; for now this is prohibited due to potential interactions with the medications I’m taking for the BMT recovery.
Over the months, my energy will return too. I’d say that right now I have only about 20% of the energy that I used to have before I was diagnosed with acute myeloid leukemia in the fall of 2013. Doctors say it can take up to a year to regain full energy. Of course, I’m hoping to regain my energy more quickly, but I’ve realized that the healing process is not something I can “push” or “rush” or even put on a timeline. I need to take it easy, listen to my body, rest, and integrate. All good things in all good time… And 100 days will be here before we know it! For now, I’m taking it day by day and practicing patience.