I have been taking things easy since my last hospital stay. When I saw Motzer almost two weeks ago, he commented that my pneumonia-like symptoms could be a side effect of the treatment. They never found any bacteria in the cultures. Torisel can cause lung problems, but usually more diffuse that my very localized distress. However my first round of pneumonia was before I was on the Torisel. But Afinitor, which I was taking before, and Torisel are closely related. So dealing with more uncertainty, we are working on the hypothesis for now that it was pneumonia, so weekly Torisel infusions have resumed.
I still have residual chest pain which comes and goes. Time-release Morphine is very nice. The other complaint when I left the hospital (I hope my blog does not become simply a litany of complaints) was that I was terribly bloated: face, legs, etc. My skin actually felt as if it was too small. As I shed the excess fluid over the next few days my skin became itchy and sore in various places; this is mostly gone now. I also learned in the hospital that part of the reason for my protruding belly (my soccer ball) is that I have developed a fairly large hernia along the nephrectomy incision. While this could be repaired surgically, the advice of Motzer’s people is that the hernia is not dangerous (larger is apparently less problematic than smaller, since it is less likely to pinch the intestine), so I don’t need to add that to my plate. It continues to astound me how varied the complications of this illness continue to be!
I have been getting a bit of Barnard work done, but mostly relaxing, enjoying some visits from friends. Off to Annapolis on Friday to spend Christmas weekend with most of my family, then back to NYC with Diana and Chris for a few days. Treatment and the next round of CT scans on the 29th, then off to PLP for New Year’s weekend.
I promised on the previous post to comment on roommates. Let me tell you about one: Pepsi. She arrived around 2 AM Saturday morning. The nurses were coming and going to get her settled in, so it was noisy, and I am a very light sleeper. I heard her ask the nurses in her broad Brooklyn accent whether they were disturbing me. After things settled down, I, somewhat warily, introduced myself through the curtain. We exchanged a few pleasantries and I fell back asleep. The following morning when we were both awake I heard her story. She is on twice-daily blood thinner injections, as I was previously. Her insurance company entered the prescription information wrong, and approved her for one syringe a day. (These are very expensive; a box of 14 is about $2000. The irony is that I have an unused box at home; prescription medications cannot be returned.) Friday morning she called them to try to straighten things out. Many long conversations. By late afternoon, her insurance person told her their computer was down, so they could do nothing before Monday. Eventually her doctor told her to come to the hospital, so she was admitted, arriving by ambulance. Insurance will cover three days in the hospital (maybe $25K), but not the medicine.
Once she had her meds, she was doing fine. She asked me when I was going up to fifteen. Fifteen, I asked? Yes, the 15th floor of Memorial Hospital has a library, pool table, card games, movies, activities like watercolor painting, etc. She had taken up watercolor painting in a previous admission, and was now quite accomplished. (Pepsi did not lack self-esteem, but she was utterly charming.) She wanted to get up there ASAP. She offered to help me with my IV line, and promised wonderful fun. Alas, I declined. A bit later (she was finishing her breakfast) she rang for the nurse, and asked for some disposable underwear. The nurse came back quickly and handed her a package. After the nurse left, Pepsi told me that she was going to sneak up to the 10th floor (which deals with gynecological cancers) since they had much nicer disposable undies! She then put in a request for a transfer to 10, which came through the following day. As she left, she said she had enjoyed having me as a roommate, but there was just better stuff on 10. The power of pink ribbons, I surmise. I did not make it to 15 this time.