So, there is a joke in here somewhere; the punchline being ask the same question to three different people and get three different answers... Today John's doctor tells us that the stem cells do not cause severe GI symptoms, fevers etc. This is great news both because that is so awful and exhausting AND because it has not been happening. We were beginning to wonder if we were missing out on some lousy but necessary part of the engraftment process. Mucositis has begun in earnest; John's simile description of it is it's "like swallowing razor blades." Still, he is able to swallow oral meds and some chocolate Boost. We're thinking a morphine pump is in his near future - tonight or tomorrow. Today's information is that mucositis is most likely the result of the total body radiation and the cumulative effect of his previous chemos, especially pralatrexate; not a result of the stem cells.
Today's complications are brought to you by the letters H and R. John has some persistent hiccups (H) that can be successfully treated with baclofen or thorazine; saving the thorazine for bedtime because it also helps him sleep. Sleep deprivation is unavoidable and we choose to see it as a necessary by-product of excellent and very frequent medical care and procedures. John is having some very realistic, colorful almost psychedelic dreams of disturbing natures especially since they seem so real (if bizarre) and like they are really happening. Effect of meds? lack of sleep? some combination??
"R" is for radiation burns; John has several on his hands. Aquaphor gives temporary relief. Funny how history repeats itself... Seth and Rebecca recommended Aquaphor for my dad's dry skin last summer and John went to the drug store to pick it up for him. John's doctors have said he will experience more of the radiation side effects like hair loss, burns and mucositis this week. This seems like more deja vu. John used to teach Hiroshima; the novel described radiation sickness and how it could kick in days and weeks after exposure; Never expected to be living through the symptoms ourselves.
Everyone tells us all in all, things are going well.
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