I was born in New York City and attended public schools in New York, Cleveland and Munich, Germany. I graduated from Ohio University, worked in the Information Technology field and then moved into the IT staffing field in Dallas, where I work today. I was 57 in 2002 when I went to my annual physical examination after experiencing several days of extreme fatigue. Two days after the exam, my Internist called and ordered me immediately to check into Baylor Hospital in Dallas, Texas for anemia. Two days after admittance and after receiving 5 units of blood, marrow was extracted from my hip. The next day I was told I had Acute Myelogenous Leukemia (AML), and was started immediately on chemotherapy for a week to put AML in remission.
After several weeks, I was released from the hospital and put on the bone marrow list to get a possible donor through the National Marrow Donor Program (NMDP). Three months later, I returned to Baylor and, after 4 days of chemotherapy followed by 3 days of full body radiation, I received a (unrelated donor) stem cell transplant from a female in Washington DC through the NMDP. I then returned to work (in a reduced capacity) after being on medical leave for a total of 11 months.
Before diagnosis, I was active, fit and healthy missing only an occasional day of work due to a cold or the flu in 30+ years. Activities/hobbies included motorcycling (street and dirt), horseback riding, fishing, swimming, teaching Judo (earned a Black Belt) and photographing the Dallas Cowboys NFL football games for a local newspaper. After transplant and return to work in 2003, I was 30 pounds lighter with reduced energy (70-90%), and started the long road back to what would become a new normalcy. That road included sporadic bouts with Graft vs. Host Disease (GVHD) that would come and go, which required various medical specialties needing monitored medical care, drugs and treatment:
Stomotology (mouth sores that affected eating, less than 20% saliva due to salivary gland damage, lack of saliva (requiring more often teeth cleaning by a Dentist), sensitivity to heat, cold and spicy food, etc) Dermatology (damage of nails, skin patches with no pigmentation on face, scalp and legs, large patches of hair-loss on head, thin skin in areas of the feet which affected walking, etc) Ophthalmology (cataracts removed, tear gland damage requiring daily artificial tears) Urology/Dermatology (skin growing or skin hardening in the wrong places).
On the financial end, I was fortunate to have had medical insurance through my employer. Co-workers, friends and family also contributed financially through donations and fundraising activities. After my return to work, my work-production was considerably lower to the point that my employment was terminated. However, I was able to continue working by working with a smaller firm. The reduction in income due to medical expenses as well as the expenses associated with paying for my medical insurance and my older daughter’s college education put a serious strain on our finances that we are still dealing with today. However, the stem cell transplant saved my life and even though my income isn’t what it was, I am still able to work and contribute financially as head-of-household to take care of my family.
On balance, the hassle and experience with the various stages of chronic GVHD above has been manageable and tolerable. Through all of that, and since my transplant, I watched my older daughter graduate from high school and college, and I am excited about my younger daughter’s upcoming high school graduation and assisting her with her college search activities. Further, the unwavering support of my wife from the beginning allows my spirits and my family’s sprits to stay high.
Today, I am actively working with no intentions to quit any time soon.
Everett Lee
