Bad news. My PET results were not what we had expected. I was supposed to see my transplant doctor on July 3. But, the results were so bad that he just decided to call me to discuss them. The lymph nodes in my stomach are enlarged again and they seem to be very active on the PET scan. So we can’t go through with the transplant just yet.
He wants to do two cycles of another chemotherapy regimen of Gemzar and Bendamustine. I don’t know how long that will take. I think I may lose my hair again. He has to discuss the plan with my regular oncologist to see when to start up the new treatment, etc. I guess this explains why I’ve been having so much abdominal pain and I haven’t had an appetite.
Since the end of April, I’ve probably been to the ER ten times. I spent a week in the hospital. Don’t tell my parents! They’ll overreact and make me move in with them or something. I feel like I’m just poisoning my body with more and more drugs and nothing is working. It’s really frustrating. Every time I get a little glimpse of good news, it’s followed with something worse.
I don’t mean to sound pessimistic or negative, but Hodgkins is supposed to be relatively easy to cure. But, somehow mine is so stubborn that nothing is working. I think we should all prepare ourselves for the worst case scenario. I’ve accepted the fact that I may die sooner than I’d like. It’s not that I’m giving up, but I’m just being realistic here and looking at the statistics. I’m so tired. I wish I could just take a break and come back. Could we just put all of this on pause for a little bit so that I can breathe a little easier? Just for one day. That would be a dream.
I’d like to be cremated. No need for me to take up space in the ground. Put my ashes into a firework and let me light up the night sky over the ocean. Play “Dog Days Are Over” by Florence and the Machine at my celebration of life. No black clothing. Do NOT play “If I Die Young.” So cliche. I think those are my only requests that I can think of so far. I’m just putting this information out there because I want you all to be prepared. Better to know what to do.
In other news, Northside Hospital chose me as one of 4 survivors to represent them at their cancer survivor celebration at the Atlanta Braves game this past Saturday. I got to be in front of the pack during the pre-game survivor parade around the field. Then, I got to go onto the field during the special presentation. They had me on the big screen with my name and everything! It was pretty cool.
My 10 year high school reunion was this past weekend. I couldn’t make it but they gave me the 10 year superlative of “Most Likely to Kick Cancer’s Ass.” That was pretty sweet of them.
My sister came to visit this past weekend too. We didn’t do anything too exciting, but she got to see my house and where I live. She was able to see me at the Braves game too. It was a short trip, but well worth the time. We had fun.
I have my first physical therapy appointment today. I had my consult last week. It should help me with my pain and keeping my strength up. I hope it helps.
This was a quick post. Slightly depressing, but realistic. I promised to keep everyone in the loop so that’s what’s going on.
Maybe my next post will be a little more upbeat.