Day +33 (Day 171)
Chris has declared that he is taking a vacation from blogging and I am now in charge. I think this is really funny, since he kept asking me when I was going to blog today. He finally handed me the computer with a knowing look, and so here I sit typing away. He'll crack in a day or two. :)
Our appointment at the clinic today was at noon with a blood draw at 11am. Appointments at the ATC in the middle of the day are dicey. You might get in right away, or you might wait for up to two hours. Essentially, you are at the mercy of the patients who had morning appointments. Occasionally, there are complications, and patients have to stay for transfusions, or extra infusions. Today, we waited for an hour and a half. A nurse came out and apologized and informed the patients in the waiting room that the wait would be long due to complications. I've been that patient, so I didn't mind the wait. We took the opportunity to go get lunch. I only mention this because I got a chance to go to the cafeteria and sit in public. I haven't done this in so long, I had to look at everything. Of course, I had to sit in a far corner away from everyone, just to be on the safe side, due to my baby immune system.
It was absolutely bizarre to be eating in public. I kept wanting to put my mask on in between bites, just in case someone coughed or sneezed. This was ridiculously paranoid on my part, since the closest person to me beside Chris was over 15 feet away. People can't spit that far, let alone propel their nefarious sneezy germs at me. I will admit that I had the mask on immediately after I finished eating and I purelled my hands twice. I'm not taking any chances. I've made it this far, and I'm not letting my guard down just yet.
We finally got into a room and I got hooked up immediately. My team came in shortly after and informed me that I'd be going back on the intermate. I just can't absorb magnesium. I take 2000mg orally and I get a big bag of saline and magnesium in clinic as well as the intermate at home. My PharmD is slowly increasing my oral magnesium. By Friday, I should be on 2500mg. He seems to be increasing it every four days. My nurse told me that she's seen patients take as many as 15 magnesium pills a day. These pills are honkers. Truly enormous. I couldn't imagine taking 15 of them a day. It would be like a meal.
I also got a bag of lasiks today. Chris ratted me out to the APN--because he loves me, and I forgot to bring it up. I've been getting short of breath, especially when I'm active. Active not in the sense that I'm jogging, but active in the sense that I'm trying to do normal things, like walk from point A to point B at a moderate pace. I've been complaining about retaining fluid due to all of my infusions. My fat pants don't fit anymore. The waist bands all have started rolling over when I sit. Very sexy stuff. My team has been watching my weight creep up over the last two weeks, and my doctor was of the opinion that it's better to be too wet than too dry. To put things in perspective, I'm carrying an extra gallon of fluid give or take, according to my weight. That's around eight pounds. If you start to retain too much fluid, it puts your heart and lungs at risk. The lasiks did it's job and I was running to the bathroom every 10 minutes. I don't think it took care of everything, but it's nice to be able to take a full breath.
Now for the good stuff.
We got the pathology report back on my bone marrow biopsy. (My butt still hurts from the puncture site). My counts are through the roof because I got neupogen yesterday. They'll level off again, because I'm off neupogen again. The pathology report showed "no morphologic evidence of residual acute leukemia." Yippee! No leukemia. We're still waiting on the DNA and chimerism tests. This will take a few weeks and I can't wait.