Tuesday, December 28, 2010

Down But Not Out

Last Wednesday, I packed up the pieces of what had been me and went to see Dr. Shore, my oncologist. The only time I'd felt worse than this was during chemotherapy or transplant. I was so unsure of my psychological footing that I brought my friend Jeff along for cognitive and emotional support.

On the blood front, white cells are normal, reds are rising and platelets are falling a bit. I don't have leukemia. But I'm experiencing a significant flare-up of graft versus host disease. Mr. Donor's lymphocytes are giving my organs a hard time, targeting my skin and liver in particular. I'd been looking forward to ending my rocky relationship with steroids, but instead of finally throwing the bum out for good, I'm increasing my exposure from 5 to 20 mg daily. It's demoralizing.

After explaining why she wasn't happy with upping my dose, Dr. Shore suggested I consider a treatment called photopheresis. This is a non-toxic way to handcuff lymphocytes, but it's time-consuming in the extreme. I would have to go twice weekly for six to twelve months. I would be hooked up to a machine for four to six hours, have my blood sucked out of me, lymphocytes isolated and irradiated with ultraviolet light, and then have my blood pumped back into my body. All the sucking and pumping will probably collapse my veins in no time, so I would have to have a catheter inserted in my chest, which makes treatment easier but life harder. Back to line-flushing, dressing changes, possible infection, problematic showering and the creepy feeling you get from have tubes protruding from your body.

Obviously, this is something to chew on a bit. Dr. Shore told me to think about it and call her with a decision because she has to get the approval of my insurance company first. It must cost a fortune. Thankfully, an Arizona politician won't be deciding my case.

I just want to put all this stuff behind me and get on with my life but I can't. Rolling Stones tunes keep popping into my head: Shattered, Emotional Rescue, Mother's Little Helper, 19th Nervous Breakdown.

To ward off the latter, I'm taking the pharmacological route: 20 mg. of Celexa daily.


Ann said...

Arghhh. I'm sorry about the GvHD flare-up & I think I can relate to you on the emotional front. These days it seems like if it's not one thing, it's another. Chin up, you'll kick this in the ass, I'm sure of it.

Ronni Gordon said...

Hey, your writing is still good.

I'm right with you on the frustration of going up from 5 to 20 mg. But we'll decrease again!

In the meantime, glad you got some Celexa.

Anonymous said...

patty, Happy New Year!! Time keeps flying by and I have not taken the time to say "Hello" so I am now. I think I have caught up with the plog. Brian is doing well, he too has been taking EXJADE, we are going to DFCI about every six weeks. We think of you often. Happy New year again.
MB :)