Sunday, November 11, 2007

Happy day +166

Day +166

The whole week has been blah, except for Friday morning. I'm still having problems thinking clearly, so there's no telling where this will go.

Friday morning we got a call from Toby, Dr. Kebriaei's PA with news about some pending tests. I know I'm going to forget something, so please bare with me. My EBV test came back negative. This means that the test they use can't detect the number of viral copies in my blood. Great news on the PTLD front. I've already been told that if my EBV numbers go up, I'll automatically get PTLD treatment. This is just so it doesn't go full blown again. Fine by me.

My LP came back clean. No PTLD in my spine or brain and no leukemia. Yippee! Three more LP procedures to do. Three more months of brain freeze to go.

There is still no news on the last of my cytogenic tests. For the life of me, I can't remember what it was for. I'm sure Chris will update on it later. This is the test that gets sent off to a lab in California and has been pending for about three weeks or so.

I've been feeling a little up and down since my last dose of Rituxan. I always feel great for a day or so following a dosing, then the little critters inside me start to die off and that starts to make me feel a little run down. This is also about the time when my temperature starts to fluctuate, which puts Chris on the edge. I ran a temperature of 100.3 Friday night and that caused quite a stir.

I forgot to mention that I was told that I could have my PICC line removed. Hurray! Toby advised us to find a doctor locally to have the procedure done. For the life of me, I couldn't think of who to call. Do you call your GP, or Internalist, or do you track down a vein specialist? I know I was putting way too much thought into it, but when you've had a stem cell transplant, other doctors who don't specialize in your particular "uniqueness" tend to freak out.

Since it was early in the day, Chris and I decided to just drive down to Houston and have it done at IV therapy. We called in to MDA and left a message asking for a doctor's order and took off. Because of traffic and other stops, we didn't' get into Houston until 4pm on the dot. We had my line taken out by 5pm and headed back to Baton Rouge.

Here's where the fun part starts. Remember me carrying on about how my brain takes a vacation after chemo treatments? Well, I had methyltrexate injected into my spine during my last lumbar puncture. I am well and truly 50 IQ points off of my game and I have ADD worse than you've ever seen it. Shiny things fascinate me. Chris and I take turns driving back and forth to Houston and since my night vision is better, I usually do the return trip. Mistake. There are a lot of shiny things at night, I'm just saying. I managed to miss the turn off to LA and headed for Dallas, instead. In my defense, I was fixated on the shiny white car ahead of us and when they turned off, I just automatically followed. It took about 15 minutes to find our way back to the interstate and then I managed to miss another turn and ended up heading back into Houston.

We got back into Baton Rouge just after 10:30. I console myself with the fact that I was minus my PICC line. This leads me to wonder if the scar on my arm will match the one on my chest. This is when my temperature registered so high. Chris and I were too tired to drive back to the emergency center at MDA, so there was a bit of contention about what to do. We decided to get some sleep and see what my temperature was in the morning. 98.4.

My skin continues to be dry and Chris has almost convinced himself that I have a light case of GVHD. There are areas of raised redness on the backs of my calves and the tops of my forearms. They don't itch, but they do occasionally feel irritated. I'm continuing on with the treatment that my doctor recommended and I have an appointment with the oncology dermatologist next month. My transplant doctor wondered if I was having a delayed reaction to chemotherapy, i.e. skin toxicity. I wouldn't be surprised at all.

I threw up on myself yesterday, which hasn't happened in a long time. I've always managed to get to something before it happened. Chris and I were driving back from Whole Foods when I just started to feel bad. It just crept up on me and I thought that it was lack of food since I hadn't eaten yet. Chris stopped to get me something to eat and five minutes after I finished, I vomited. Not an all around good day. I felt better by evening and after a light dinner I vegged out on the couch.

That sums up my weekend.


pj said...

I know exactly what you mean by blahness but it's very hard to describe, as far as symptoms go. Sometimes fresh air works for me, or I try to do something distracting that makes me forget about my body for a bit.

Congrats on getting the PICC out. I've had three at different times. The scarring is minimal.

Paige said...

Whoa, right now some of the stuff on your blog is in French... like, at the moment I am "enregistrer un commentaire". I'm sufficiently confused...

But anyway, it's great that things are getting better! You should go to Swarovski's crystal store in the mall, Ann. I saw all kinds of shiny things in there!

Carilou said...

So you are like a magpie with scales and motion sickness?