I had a great weekend. Wonderful to see my friend, so nice to just relax and feel like I was in college again. Nothing like seeing good friends to put you in a good mood.
Nothing else is going well.
I had a lumbar puncture (spinal tap) a couple of weeks ago that showed a few leukemia cells in the spinal fluid. At the time I really didn't see it as a big deal - literally they found seven cells, and though it technically counts as a relapse, I was already slated to get more chemotherapy as part of my maintenance plan to prevent another relapse, so I just saw it as more of the same with a variation. The treatment for CNS (central nervous system) disease is chemotherapy injected directly into the spinal fluid, which sounds really creepy and does freak me out a little, but with some good sedative drugs isn't terribly anxiety inducing. You can get headaches from it but luckily I didn't. I had some low grade nausea and was a little tired but that was it. I'll get that twice a month for a certain period and eventually go down to once a month with treatment to continue for a year.
We decided to move ahead with my maintenance chemo, which is this drug called Vidaza that also has very minimal side effects. I get it for a week once a month. It's a short infusion and I will spend more time waiting around to get it at the outpatient infusion clinic then actually sitting in the chair getting the drug. That's nice. I started that yesterday, and I feel fine.
Fast forward to this morning when I got a call from my nurse at clinic. I had a bone marrow biopsy last Friday because with the relapse they have to check everywhere the disease could be hiding now to see if it's coming back. Remember, I haven't had any disease in my marrow (the main spot where leukemia likes to live) since before my first transplant four and a half years ago. There are no signs in my peripheral blood counts that there's disease in my marrow.
Biopsy came back inconclusive. There are some abnormal cells, not enough to qualify as a relapse, but too many for it to be clean.
I don't even know how to react to this.
I'm really upset. I feel like the walls are closing in on me. Granted, I will probably feel better about this in a few days when I get my fighting face back on and put things in perspective - not a full out relapse, I'm getting chemotherapy, I know my doctor is fighting for me and doing everything he can.
But is it going to be enough? Or is this just the beginning of more bad news?
I really hate it when the reality of my situation breaks through. I hate writing negative posts, I hate feeling negative about things, I hate not being cheerful, I hate feeling this vulnerable and putting it out for the entire world to read about. But I also hate lying, and I would be lying if I tried to pretend that I wasn't having a bad couple of weeks.
For now, I'm going to go take a walk outside in the sun to a cafe, get a smoothie, and then head over to the hospital for a blood draw, infusion, and to see my nurse.