Today marks 3 weeks that John has been home; there have been a lot of developments. His hair is regrowing; he is shaving again; he started getting pretty pink again after about a week at home so the steroids were increased from 8 to 32 mg; his legs are very weak, particularly the quads, from proximal muscle wasting caused by the steroids so he walked with a cane briefly but he has been able to hang it up for the last couple of weeks; he has high blood sugar also caused by the steroids; he is eating like crazy (steroids also contribute to that but so does all the weight he lost in the hospital - he is still down 50 pounds); he is driving more and is taking fewer naps and feeling more alert.
Our at home infusion nurse changes his picc line dressing once a week; we flush the picc line every day. Photopheresis in Phila is still 3x/week and that is likely to continue for the foreseeable future. We see someone from his medical team every time we are in Phila to check his meds, rash, and general well being.
We had a wonderful visit with Michael from Friday to Wednesday. He helped with driving, with a video inventory John has been wanting to begin, with hunting potential vacation spots, with a video project for me at work, and jobs around the house too numerous to mention. It was wonderful to have him home; many thanks to Meredith for sharing him with us.
John isn't neutropenic (and platelet and hemoglobin counts are holding steady or slightly improving) so we've been able to eat more diversely but we are still avoiding any fresh fruits and vegies we haven't washed ourselves, anything sitting out under lamps, and lunchmeats. Our good friend Barb gave us a crash course in counting carbs to help us understand diet's effect on high blood sugar. She ended our course with the admonition that since his high blood sugar is steroid induced, diet probably isn't going to have much effect. Leave it to the nutritionist to be right; John's PA has the same opionion and the sugar readings of this week bear out their suspicions. Until the steroids can be reduced, John is on both long lasting and short acting insulin. Yesterday we received another crash course in blood sugar monitoring and insulin injection. He is a champion injector already but we were both a little confused about using the monitor this morning. Which brings us to today...
Which is a terrible, very bad day. It started off great with the arrival of our good friend Barry K who volunteered to go with John to his photopheresis appointment in Phila today. I left for work in the dark right after John and Barry left for Phila and backed up into Barry's van. It was dark and I couldn't see very well but there is minimally a very substantial dent. Barry was gracious when I told him I wrecked his car and he and John finished up in Phila in record time. But, then I got a phone call telling me they would be delayed because John (weak legs) had fallen crossing the street, cutting his head and hand and scratching his glasses. He has been in the ER getting the bleeding stopped, getting a CAT scan, and waiting for a doctor to read it before he can come home. By the time they get here, it will probably already be dark again and Barry might not be able to see his damaged car until morning. And, we still have to do the blood sugar monitoring again - hopefully we'll be more skilled this time and will have a better ending to a pretty crappy day. On the bright side, no one was in the car when I hit it and there were no cars in the street when John fell so maybe the day wasn't nearly as bad as it could have been.
After reading this, if you still feel safe visiting us and if you are healthy, we would love to see you.
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