It’s been a good news/bad news kind of month. The good news is that my recent bone marrow biopsy shows no sign of any relapse of my leukemia. It appears that my brother’s killer T-cells are doing a great job of finding and attacking any remaining leukemia cells in my bone marrow.
The bad news is that those same killer T-cells are attacking my eyes and my tear glands. My ophthalmologist at M.D. Anderson, Dr. T, calls it chronic ocular graft vs host disease (GvHD). In layman’s terms it is a condition that causes very extreme and painful dry eyes. It’s a fairly common side effect of stem cell transplants and it is a major quality of life issue for Survivors.
Dr. T gave me a Schirmer’s test that consists of placing paper strips under the eyelids to measure the amount of moisture in the eyes. Healthy eyes should have 10 to 15 millimeters of moisture. My left eye had only 3 and my right eye had only 2.
Dry air, especially air-conditioned indoor air causes pain that can best be described as having sand poured into my eyes. When that happens I can’t see very well and reading is out of the question. These days I often sit with a humidifier blowing in my face while I watch TV or try to read. Last week the moisture from the humidifier landed on the keyboard of my computer and shorted it out.
Mary Pat strapped a humidity meter to my shirt to see what level of humidity would be most comfortable for me. She noticed that I stopped complaining of pain when the humidity got up to about 65% and when there was no breeze or fan blowing on my face.
Dr. T suggested that I get a pair of swim goggles to keep my eyes from drying out. They look strange as hell but they actually work pretty well. There are only two problems with using them. One is that they tend to fog up pretty often which makes driving difficult. The other is that they tend to cause panic amongst TSA agents when I show up at the airport wearing swim goggles and a surgical mask.
Another suggestion from Dr. T was that I buy a case of PuriLens Plus saline to drop into my eyes. I had been using individual vials of Refresh brand saline drops but that became too expensive. PuriLens comes in much larger bottles (4 oz.) which are TSA approved and can be carried onto planes.
Mary Pat and I spent the last six years refurbishing a 1940’s lake house in Evergreen, Colorado which we hoped to make our retirement home some day. Unfortunately, the air is so dry in Evergreen that I could no longer stand to be there. Last week we reluctantly sold that house and bought a home in Naples, Florida, one of the highest humidity areas in our country. I am hopeful that this change of climate will decrease the eye pain. Fortunately Houston also has high humidity so I’m comfortable when I’m outside here. However, the heat is a problem in the Summer. One of the other unfortunate side-effects of GvHD is that my sweat glands don’t appear to be working very well. When people around me are soaked in sweat, my shirt is dry as a bone. I have been warned to avoid getting overheated since heat stroke is a constant danger. So that’s the dilemma for me. My eyes are comfortable outside in the hot and humid weather but I risk having a heat stroke. I can go inside where it is air-conditioned but then my eyes are painful. It’s a problem for me but it sure beats the alternative.
Next week is the last round of chemotherapy for me. The clinical trial of Vidaza has lasted 12 months. I’m not sure what Dr. C has planned for me in the future. He will probably try to wean me from the tacrolimus which has tamped down the GvHD but has also suppressed my immune system. I will need regular blood tests to monitor for a possible relapse. The good news is that most people who relapse do so in the first year. I am now 13 months out from my stem cell transplant and I’m still leukemia free. Onward and upward!