Summer is Flying By

hello all -
So 40 seems to be treating me so far so good ... I don't understand what the big hype was all about. I mean, I wear my "forty and fabulous" t-shirt everyday to remind myself and it seems to be working. Is that too much? I loved all the messages and emails, the roast and toast by my family, special night with some friends, my airplane ride and upcoming get away to Quebec City from my dear Troy, and my groovy new bike from my four boys. Forty is great!!

Thought I'd do a quick update in between our four-day get aways we've been doing to the Adirondacks; York,ME; and before we take off to Lake Willoughby tomorrow for a week. Lots of fun, play, and water activities from swimming to kayaking to sailing and waterskiing. Never a dull moment with us!
So I had a PET scan a couple of weeks ago and to no surprise to Dr. Meehan, these is still a tiny bit of disease there, very little he says. In spots that it was present in March, it's mostly no longer. It presents a spot in the liver and in my left armpit. Again, each spot is so small, Dr. Meehan and Beth both can't feel anything there even. For now we presume it's disease. What the PET does for Dr. Meehan is provide him with information as to how fast to taper my immune suppresant. As I said, it did not surprise him that there was disease, (sure it would have been nice for none, but not a surprise that there was). Dr. Meehan reminded me that he was surprised LAST year at this time that it was gone. That with a mini transplant (such as I had both times), it is a process, and works sort of in waves. So first is the transplant itself (hospital time and just after), then the goal so far has been to keep me stable from infections and getting too much GVHD (graft vs host disease), keeping counts stable, and getting to day 100 unevenfully ..... so far so good. So when we've been saying I'm doing great, that's what we're basing this on.
Now begins another wave, tapering off my immune suppresant. The beauty of having a normal PET last time was that my taper was quite gradual, therefore lessening any GVHD. Because the disease is present, Dr. Meehan with taper my Neurol pretty aggressively (like in half!) this time. This will most likely induce graft vs host, which is what he's hoping, to hopefully induce graft vs tumor (or Lymphoma in my case). My liver and kidneys have been rock solid. My skin has had some recent changes (discoloration they call "dirty neck"), but my lips have been hit hard with sores that almost look like bad burns. They are getting in better shape now, but we're afraid that will return. Ouch!!! That's where we're at. We'll repeat a PET again in 2-3 months after I'm off my Neurol and maybe even some other meds. Step by step, it is a process.
Off for another fun week ... hoping for sunny and warm skies. A little more Bethel time and maybe even another beach stay before summer is over.
Love - Pam

p.s. oh .... something cool .... I got a letter from my donor that was sent via the National Bone Marrow Institute. Wishing me well and continued wellness too. It was really nice. After a year+ I believe is when I can have contact back.