My blood counts had actually improved from their downward trend in December, and all of the biggies were back within normal range when I saw the Dr. on Jan. 2nd:
Blood counts:
HGB: 13.7
PLT: 222
WBC: 4.93
ANC: 2.6
Something weird is going on with my joints in my hands/feet, though. It started on Christmas, and I felt like maybe I had just done too much that day, and that my hands were just fatigued...but then it didn't get better. The joints in my fingers are very sore and stiff - almost like I have severe arthritis. The thumbs are especially painful. I have a hard time opening bottles and jars, and they feel weak, like if I needed to pick up or hold something large or something heavy, they would fail altogether, and I would drop it. The doctor tested my uric acid levels to make sure it wasn't gout, tested my tacro level to make sure that it wasn't too high, and was otherwise stumped as to what it may be causing my discomfort. I told her that I felt stupid for mentioning it, but she noted that my liver enzymes were high (for me) and that my potassium was high - so there was definitely something going on there, they just don't know what yet. She said that they could send me to a reumatologist, but that it was generally unhelpful. I asked if people get GVHD in their joints, is that a thing? and she told me that it does sometime manifest in joints and connective tissues, but that it generally causes a stiffening and limits the range of motion, instead of causing pain.
As of my last appointment, she told me to go ahead and take occasional ibuprofen for the discomfort, but that if it didn't get better, they may want me to go back on a small dosage of steroids to see if that improves the situation. (Not a fan of this plan. Finally starting to see improvement from some of the awful steroid side effects, like not being able to sleep, wanting to eat everything that's not nailed down, and my lovely moon face and camel hump has finally receded a bit, so I'm not too keen on inviting all of those things back into my life.) It's been almost two weeks. My hands still hurt, so we will see.
Finally growing a little peach fuzz on my head. It's strange colored, and like a fuzzy baby duck. I don't think that I was prepared when I lost my hair for how long it would take to start growing back. I am still very bald. You can still see my bare head through the little bit of hair that has decided to grow. It's been four months since I lost my hair, and it isn't coming in very quickly or very evenly. The sides of my head are still quite sparce. I will be wearing hats for quite some time.
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| Fuzz |
I'll be seeing the doctor again this week. At my +100 day appointment I was told that my tests came back < 97% donor - or donor to the limits of the test - which is great, but at my last appointment, the doctor told me that more of the tests had come back and that one of the cell lines - my T-cells - testing came back 90% donor, 10% me, so they'll be continuing to test and monitor this every 4 weeks or so to check my chimerism.
Still keeping myself very isolated. Whenever I do venture out, I'm shocked about how icky people are in public places. Way too much coughing and snarfling - I think I physically recoiled when I kid sneezed on his mom, behind me, in line at Walgreens last week. I think I'll just order as much as I can online for home delivery. Heading out to the store for a sale on toilet paper is just not worth it. Getting sick terrifies me right now.
Stay well. I plan to do the same.
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