Day 79
Tomorrow John will have his next bone marrow biopsy. If you are new to such things, it involves a thing the size of a first grade pencil that is pushed down into the hip from behind far enough to be able to suck out several vials of marrow. You can count the dark blue dents in his back. That one gets used to such things speaks a quiet lot.
It was cloudy here today, which prompted John to venture out with me for a trip to the grocery - he has to avoid the sun to keep GVHD from flaring up. Given all the drugs, the emotional ups and drains and the numbing boredom, it's hard to know how he keeps going along. There are moments and days when he is snappy and even surly, mind you, but when I was his age - no, there were also things to worry about, but then you can see what that kind of thing turns you into if you look at me.
But for the lack of hair, puffy cheeks, gray tint to his skin and the tubes that are occasionally visible, you might not realize that John was anything other than any other college student on the five year plan muddling along like the rest. You see worse at the clinic. The other day a woman who could have been 40 or 70 got off the elevator wearing elf shoes and ears. You had to look twice to realize she was well into chemo treatments. It was a good look for her. John mostly wears his Andy Warhol wig and a knit cap when he goes out. Sometimes he hides behind heavy rimmed glasses too. "Whatever gets you through the night", I think is the line from the song.
Lunch today for John was my special homemade nacho mix. It's not much, but it's hot food. Tonight I am cooking a tamale pie and some fresh salad, which he has been able to eat again for a bit.
There won't be much news from the biopsy until next week, but the results should be good, given the secondary reports from John's recent blood tests.
White blood count - 4.2 ("normal" is 4.3 to 10)
Hemacrit (red count) - 40% (38 to50%)
Platelets (in economics these would be "leading indicators") - 86 (150-400) Low, but rising
Neutrophils (the immune cells) - 2.89 (1.8-7)
Some of John's electrolytes remain low, mostly due to immune supressants, which will be reduced shortly. If we can pick those up, he can get off daily fluids and just might get rid of his Hickman line before we are gone.
We were driving my an overpass and saw some people with a sign that said, "Bush talk to Cindy". Cindy Sheehan is from around here and is the mother of a reserve soldier killed 5 days into the war. She is sitting on the side of the road 5 miles from Crawford, Texas because she wants to talk to the President. According to reports from all sides, her vigil is personal and not political and if so, I think I have some sense of the hurt, grief and helplessness she must feel. There is so much of life that is wrong and so little that can be done. Occasionally, one gets a chance to do try while there is time.
It was cloudy here today, which prompted John to venture out with me for a trip to the grocery - he has to avoid the sun to keep GVHD from flaring up. Given all the drugs, the emotional ups and drains and the numbing boredom, it's hard to know how he keeps going along. There are moments and days when he is snappy and even surly, mind you, but when I was his age - no, there were also things to worry about, but then you can see what that kind of thing turns you into if you look at me.
But for the lack of hair, puffy cheeks, gray tint to his skin and the tubes that are occasionally visible, you might not realize that John was anything other than any other college student on the five year plan muddling along like the rest. You see worse at the clinic. The other day a woman who could have been 40 or 70 got off the elevator wearing elf shoes and ears. You had to look twice to realize she was well into chemo treatments. It was a good look for her. John mostly wears his Andy Warhol wig and a knit cap when he goes out. Sometimes he hides behind heavy rimmed glasses too. "Whatever gets you through the night", I think is the line from the song.
Lunch today for John was my special homemade nacho mix. It's not much, but it's hot food. Tonight I am cooking a tamale pie and some fresh salad, which he has been able to eat again for a bit.
There won't be much news from the biopsy until next week, but the results should be good, given the secondary reports from John's recent blood tests.
White blood count - 4.2 ("normal" is 4.3 to 10)
Hemacrit (red count) - 40% (38 to50%)
Platelets (in economics these would be "leading indicators") - 86 (150-400) Low, but rising
Neutrophils (the immune cells) - 2.89 (1.8-7)
Some of John's electrolytes remain low, mostly due to immune supressants, which will be reduced shortly. If we can pick those up, he can get off daily fluids and just might get rid of his Hickman line before we are gone.
We were driving my an overpass and saw some people with a sign that said, "Bush talk to Cindy". Cindy Sheehan is from around here and is the mother of a reserve soldier killed 5 days into the war. She is sitting on the side of the road 5 miles from Crawford, Texas because she wants to talk to the President. According to reports from all sides, her vigil is personal and not political and if so, I think I have some sense of the hurt, grief and helplessness she must feel. There is so much of life that is wrong and so little that can be done. Occasionally, one gets a chance to do try while there is time.
