April 23, 2012
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Who’s That Hot Bald Chick? Oh Yeah, It’s Me!!
Posted by Stephanie 10pm CST from the apartment
So, my transition to Super Hot Bald Chick is complete. In other words, my hair is gone. It started the middle of last week. I have this habit of playing with my hair, as short as it may be, when I’m just sitting around on the couch or hanging out surfing the web. Most of the time I don’t even realize I’m doing it. Starting a few days ago, I could get one or two hairs if I reached up and pulled. The next day, that number in certain places on my head became five or six at a time. Yesterday morning, I woke up to find my pillow scattered with short dark hair, and I barely had to reach up and tug to get 30 hairs in a little cluster. I tried to wash it that night, and it was on my hands, all over the bottom of the tub, basically everywhere except on my head! This morning, as I tried to gently comb my super thin hair into something acceptable for leaving the house, I realized I was sporting a few bald spots, and knew without a doubt that it was time. I stuck a hat on my head so no one would have to be subjected to the sadness it was, and this afternoon after bloodwork, I had it shaved off at the beauty/barber shop there at the hospital. As annoying as it was getting, shedding everywhere, I’m glad it’s gone. I know that may sound strange to some people, but this is the fifth time I’ve lost my hair, so I’m not attached to it the way I was the first time.
Immune system update: my body sucks. No, really, I think it’s gone bonkers. Even the triage nurse was telling me everyday that I needed to have a serious chat with my bone marrow. My white count and hemoglobin dropped slightly on Wednesday, and my platelets continued their downward spiral, resulting in a third platelet transfusion for this round. After the first two I had, my platelets went up some, of course, but not as high as they should have been at only around 35K, suggesting they were still dropping. I expected something similar this time, so I was shocked when Thursday’s bloodwork showed they were way down at 22! In addition, my hemoglobin had dropped from 8.0 down to 6.9—low enough to warrant a packed red cell transfusion. And if that weren’t enough, my phosphorus level went from nearly normal at 1.8 to almost nonexistent at 0.7. Huh?! I’m already taking six K-Phos tablets a day to keep it in normal range. Even Dr. Benjamin was stumped by that turn of events. The only good news was that my white count had climbed from 0.5 to 0.9. All in all, I was scheduled for 2 units of packed red cells and a I.V. phosphorus infusion for Thursday evening.
It was a long night. The appointment was at 6pm, but we sat in a packed waiting room for a solid two hours before being taken back. That’s when we learned the phosphorus infusion was going to take six hours. Six hours! I knew the two units of blood would take four total, but I wasn’t anticipating being there much past that. By the time everything was delivered from the pharmacy, got hooked up, and ran it’s course, it was 2:40am when I staggered sleepily from the hospital. Needless to say, mom and I were more than ready for some decent sleep when we collapsed into our beds around 3:15am.
Friday’s labs were far less exciting. White count was the same, hemoglobin was up to 9.5 from the transfusion, and platelets were down to 14K. Saturday, I went for another set (we’re now going on more than a week and a half of daily labs—my poor veins are cursing me), and was thrilled to learn that everything, EVERYTHING was going up. White count up to 1.7 (no more hermitude!), hemoglobin up a couple of tenths, and platelets rose from 14 to 18. It’s not much, but by golly, it’s something, and it’s in the right direction! Yesterday showed things still going up, but today my hemoglobin has dropped almost a whole gram. Platelets continue to be the slowest to recover, coming up only four or five at a time, today’s reading at 28K. Until we show significant progress, I will continue to be on daily labs.
Aside from our daily trips to the hospital, there’s not a ton going on. The move into the apartment last Wednesday went smoothly, and the place is beautiful. The church just updated the apartment, so the couch, recliner and mattresses are just a few weeks old. In addition there’s a lovely patio to sit out on and soak up some vitamin D. It is at the very top of the price range for the church ministry program, at $35 a day. WAY cheaper than a hotel, but it still adds up to more than $1000 a month.
Mom and I try to get in a short walk everyday, be it around the apartment complex or at the hospital. I’m able to handle about 10 minutes at a relatively slow pace before I tire out. Definitely better than this time last week, when mom was pushing me through the hospital in a wheelchair. Speaking of mom, my hat goes off to her for all the time she spends in the kitchen everyday. With the nutrition plan I’m following, plus the couple of complementary/alternative therapies I’m doing, she is making fruit and vegetable smoothies four times a day, blending this cottage cheese and flax seed oil mixture twice a day, plus making breakfast, lunch and dinner from scratch. The amount of dishes done around here everyday is pretty ridiculous, but I’m thankful she’s here to do it, and thrilled we have the time and means to make it happen.
So that’s about it for now. I miss Sammy terribly. We chat on the webcam often, but it’s tough to be apart. I’m looking forward to his next visit at the beginning of May! Goodnight all!
–Steph
