As the seventh anniversary of my fourth bone marrow transplant approaches, I am haunted by the fear that I will not make it, that it is too good to be true, that something will happen in the next 36 days to hijack it.
Last night I dreamt that I was covered in a rash and that when I went to the doctor he said that meant I had relapsed. He took out needles and syringes. It was going to begin all over again. I was going to lose my hair. I had a 70 percent chance of surviving. I tried to look at this in a positive way, but then I thought of PJ and Ann and Dori who didn't make it, and I thought that could also be me.
It doesn't take much to spark a relapse nightmare these days. For example, I have noticed a couple of my fingernails splitting. I wondered why this was happening because my nails have stayed strong through everything. I dreamt that the nail problem was a sign I was relapsing. In reality, I filed the split ones, and they are OK now.
On Dec. 23, Susan Strother Carrier, who used to blog about leukemia, posted on Facebook, "Just received clean bill of health from oncologist during my annual visit. it's been 8 years since my stem cell transplant. Best present ever!"
I congratulated her and then said my anniversary is coming up too (Jan. 31), but that I am still superstitious about saying it will happen for sure. Maybe that is also the journalist in me. You don't write, "The meeting will take place next Sunday." What if it doesn't? You write, "The meeting is expected to take place..."
I expect that my seventh birthday will arrive. After five years, I was officially cured. Still...
A woman who I met at a party said she had ovarian cancer eight years ago and she does not worry about it coming back. I told her my fear of counting my chickens before they are hatched (sometimes a cliche works). She said she is the opposite. "I don't worry about getting hit by a bus," she said.
Maybe it's because I was hit by a bus so many times. Or because I go to Dana-Farber so often that it is hard to put it out of my mind.
It was good to wake up this morning and realize it was only a dream, but still, difficult to shake it off.
This is also known as extracorporeal photopheresis or light therapy. Photopheresis can improve skin, liver and mouth GVHD.
Doctors normally give photopheresis after other treatment hasn’t worked or has stopped working. Photopheresis is a complicated process and it may take up to 6 months before you see any real improvement in symptoms.
To have the treatment your nurse will connect you to a machine by a drip. Your blood then goes through the machine, which separates off some of your white blood cells. You then have your blood, minus the white blood cells, given back into your vein. The separated white blood cells are treated with a special drug and then exposed to ultraviolet light. This light activates the drug so that it is able to destroy the abnormal white blood cells. After this process your nurse gives back the treated white blood cells into your vein.
Each treatment takes between 3 and 4 hours. Having this procedure does not hurt, but some people may feel a bit weak or dizzy during or after the treatment. After the treatment your skin and eyes may be more sensitive to sunlight for about 24 hours, so you need to protect yourself from the sun and wear sunglasses.
The Kraft Blood Donor Center (where I get the procedure done) is technically at Brigham and Women's Hospital, but I usually say Dana-Farber because I come through that building and it is halfway down the corridor connecting the two. Ellen, the PA, was not happy with all of the outdoor tennis I played this summer, and neither was Dr. Alyea, but I applied a ton of sunscreen, and, even on the hottest days, sometimes wore long sleeves.
In the department of "learning more than I never wanted to know," I learned the the procedure was originally developed to give lymphoma patients radiation only to their blood without having to do it to their whole body, and then some genius researcher realized it works for graft vs. host disease of the skin. If you click on the link, you can read about how GVHD is a common side effect of an allogenic bone marrow transplant (a transplant using a donor's stem cells). It caused areas of my skin the thicken and harden, and my hands to swell, constricting my movement in a way that I did not totally realize until the procedure began to work, meaning the swelling went away and my skin softened, with the net benefit of helping me move better on the tennis court!
I hope to cut back in the near future to every other week. For some four months, I have been going every week, and for the three months before, twice a week. You don't get to ever totally stop because if you don't get the procedure periodically, the problem is likely to return.
During the times when I was dehydrated from diarrhea or from extreme sweating over the summer, my veins flattened out and they had trouble getting the big needle in. A few times I even got fluids before. I am going today and I hope I do OK in light of two factors that might cause some dehydration: the wine that I drank last night at our dinner, and the coffee that I plan to drink today at the tennis tea following the round robin.
I'll have to drink a lot (of water) on the way to Boston. I was going to drive myself straight from Longmeadow, but I decided to only spend a short time at the tea so I can come back and get a ride. Fingers crossed that the ride will be non eventful.