About Me

When people find out a person has or has had cancer, they get nervous. They don't want to "intrude" but they are full of questions. How did you find the cancer? Aren't you young for this? How long have you had it? Did you lose your hair? What is the prognosis?
For me, I think the story begins in January 2003. I had a horrible cold, which developed into what I thought was bronchitis. Of course, being raised to be tough, I didn't go to the doctor. After a week I was feeling better, but noticed that what I had thought were swollen glands in my neck, had not decreased on the left side. I continued to monitor
this bump, making jokes and calling it my lymphoma friend. Little did I know that's what it actually was! I had friends who were nurses feel it, and of course they all said to go to the doctor, which I still didn't do! Finally, in early June I was forced to the doctor to get my allergies checked or she wouldn't give me new prescriptions!
I knew this was something serious when the doctor said I couldn't wait 3 weeks for a CAT scan. Like most teachers, I wanted to wait until school was out for the summer to do all my appointments! I had the CAT scan the next day and was told a few days later that there was "activity". Don'tcha love that word?! My GP sent me to a general surgeon who was going to "explore the mass". I still didn't quite realize that they thought it was cancer, until I said to the doctor, "Isn't that a nice term for biopsy?" and he finally used the word!
The doctor was great telling me it was
Hodgkin's Disease when I woke up in recovery. He was very gentle, had already spoken to my family in the waiting room, and explained about the different kinds of lymphoma. If you have to have cancer, this is the one to have. Very high remission rate!
BUT... I am one of the exceptions! I did the standard ABVD chemo plus radiation treatment. It went pretty well, the radiation really burned me up, but the chemo was fine.

In February 2005, a year after I was told I was in remission, spots started appearing on scans again, and I was sent to Dana Farber Cancer Institute in Boston for an autologous bone marrow transplant, also know as a stem-cell transplant. Autologous means they used my own bone marrow, after extreme radiation. At first it seemed like it worked, but it didn't; now sludgy stuff was showing up in my lungs on the scans! I was hopeful that it was "just" fungus, instead of cancer, but a lung biopsy told us it was cancer again. BTW, of all the things that have been done to my body in these 5 years, the lung biopsy was by far the worst and most painful with the longest recovery.
Now I was switched to a new doctor at Dana Farber and got prepared for an allogenous transplant, from a donor. Of course you first have to find a donor, and this is not "House"! My only potential match would have been a sibling, and she didn't match. We waited about 6 months until a donor was found. I did not feel or act sick during this time, exept after I had the maintenance chemotherapy I would be a little weak for a few days.
The transplant took place on October 5, 2006 and I went home the next day! This picture shows me w/ my "bag o' blood." It's just a simple transfusion, no pain at all!

The transplant was a success, so I have been in remission for over 18 months, but now I have something that can be as lethal as cancer, Chronic Graft vs. Host disease. Basically, the donor bone marrow has killed off the cancer, but does not yet recognize its new host (me) as its home, so it is now fighting my organs. This is something that will just take time, and the goal is to keep it at bay and keep me alive until the new cells realize they are in a permanent home!
Of course there's lots more information about medications, treatments, clinical trials of new treatments that I've tried, my hair (which is what so many people care about) how it has effected my family and my overall quality of life, etc. I can address those things in future posts if people have any interest.