Thursday, July 16, 2015

I’ve always said that I like unique things. Well, I have something unique & rare that only affects about 1000 people in the US every year. I was handed a diagnosis yesterday at Gene Pashold’s office of large granular lymphocyte leukemia. It’s a killer but it takes its sweet time. Looks like this could be a long journal! He stated that I’m only 1 of 2 patients of his with this form of cancer and that most people can easily live 10 more years. Ten more years…ten more years. Let that sink in.

I took it all in stride for the most part. I had no preconceived ideas of what it could possibly be going in there but assumed it was something that wouldn’t kill me within 6 months or else I would have heard back from them. “Get your bucket list prepared!!” I’ll still prepare a bucket list but it can be more sublime now that I have a long term horizon with which to work. ‘Long term’?? WTF? My dad lived until he was 98 and he had a brother that lived until he was 102. They both had all their faculties up until the last few weeks. That’s not my story it seems. That’s OK, I always thought my brother Joe would be the one to have the longest life. Jeez, that would be a real kick in the ass if he and I both died before mom does. She is in pretty good health at 88. Go mom!!!

My beautiful wife and I went to dinner last night and started getting comfortable with the idea of me exiting the picture in 10 years. Lots of questions and work to do on the bucket list. I’ll make my bucket list the last page of this journal, sort of an appendix, pun intended. We talked about having a living wake where we would just have this huge raucous party while I’m still feeling good in lieu of a dead person wake, which is far more morbid and boring. Who wants to come look at a dead person for God’s sake? I’m not Irish so I can have whatever kind of wake I want! Right? Maybe if I’m still feeling decent and it’s 6 months from death we can have that living wake. We use anything as an excuse to throw a party!!

I’m planning to call WF Baptist Health to see about getting a second opinion. That’s on my immediate to-do list this morning. I wonder if they’ll need a referral from a doc or will simply allow me to show up with my current diagnosis and high lymphocyte count. By the way, they didn’t draw blood yesterday so I don’t know what the count is now. Gene said some people have counts as high as 100,000 and still live a while. According to Gene, it’s my T-cells that are afflicted, produced in my thymus glands, wherever they are. (Google search!!)

Gene put me on a quarterly blood draw schedule to recheck my counts and semi-annual visit schedule with him…until things get crazy. I’ve got a ton of questions like:

Does the long-term LGLL progress to acute LGLL as the counts get more out of whack? (Edit: No, LGLL is, by definition, a chronic, slow-growing leukemia.) How long does that take? When during the progress of the disease do you start feeling really crappy? When do treatments begin? How effective are treatments? What are the treatments? Should I tell my kids about it? Should I tell my brother? I sure as hell am NOT going to tell my mom. I’m actually thinking of calling Joe this morning to discuss. Don’t want to jump to any conclusions but then you never really know how long before things start getting ugly.

Gene suggested that if I start having unexplained night sweats, swollen lymph nodes and anemia, things have progressed to the treatment stage. I had read similar symptoms on a website. Apparently what happens is that all those pesky, out-of-control lymphs start crowding out other equally important stuff in a unit of blood and that can cause the anemia and lead to possible recurring infections. Something to look forward to!