cancer – day 94

Spent thirty minutes on the phone with the nurse this morning, after a night completely void of sleep and wreaked with discomfort, a rash that seems to be progressing rather than receeding, constant gut pains, and some severe central chest pains if I slouch or lower my head . . . it was time to talk to someone who knew whether what the hell I was trying to describe to them was of side effects that they are or are not surprised that I am having. No surprises, except that I apparently have experienced every known side effect of chemo, and then some.

Friday night we finally decided we should call the doctor about my pain and discomfort, to make sure there wasn’t anything wrong and that what’s happening is within the norm for chemo patients. Mark called in and left a message for the on-call doctor to call him back on his cell phone (Lombardi wasn’t on call Friday night, too bad it turns out), and then when the guy called back, Mark just handed his phone to me (ugh, I can hardly think, let alone express what the heck I just spent ten minutes trying to describe to Mark and hearing him succinctly summarize when he explained why he wanted a return call). Anyway, I don’t even remember the whole conversation with the on-call doc now (that’s what I get for not journaling about it right away or at least the next day, eh?) But I do remember the guy had a really strong accent and talked really fast, tough combo for chemo girl’s brain to process and converse at the level the guy apparently expected, since at one point he even said “are you still there?” Next time, I’m not letting Mark give me the phone in a situation like that until they insist AND he tells them I’m having a hard time communicating quickly. The outcome of my conversation with the on-call doc Friday night was that he was going to send a message to the emergency room at Sutter telling them to expect me and get me attention right away. That was for the constant central chest pain from curving forward (unlike heartburn, which I guess is a temporary flare up, fairly literally, and has nothing to do with your body position). But I was so exhausted at that point, and the pain hadn’t gotten any worse in the hour it took us to have all those conversations and phone calls, and so we decided to wait just a little bit longer and if it didn’t get worse, give it the night to see how I felt in the morning. It’s not like I had a fever or anything suggesting an infection (which is apparently what scares the bejeebbers out of oncologists), and it was conceivable that everything I was feeling were the “normal” side-effects . . . though perhaps side effects more severe and/or much earlier than anyone expected I would have at this early stage in my first chemo cycle.

Oh right, I almost logged off without explaining how the phone call with the oncology nurse, Michael, went this morning. (How about that? My cousin Mike is a nurse out in Nebraska, and here I am talking with my second oncology nurse out here who happens to have the same name!)

So I was on the phone with Michael about 30 minutes, ticking off all the side effects and being told what to do about each. Then Mark had to take me to the drugstore for a quick run up on the things Michael suggested, and now I am literally a walking pharmacy. I have this lunch bag sort of thing full of meds and directions and our charting of my meds, food, and liquid intake. I should scan one of those charts so people know what I’m talking about. It’s basically a printed out page of our google calendar for the cancer treatment, and then I write in everything as we go, if it something that isn’t scheduled for a particular day and time. So like Monday the 21st, I had two pre-chemo meds to take at certain times before the infusion, and I had to put lidocaine on the port in preparation for the infusion. That was pre-printed on the calendar. Then we hand-wrote in everything else as we went, what time I took what meds, how much fluid I had to drink, what food I ate at what time. Going into next week, I need to start charting the actual side effects too, not just the meds I’m taking (though it is obvious that taking compazine means I was having nausea and midol means I was having bone pain, and so on). Maybe the side effects charting should be separate from the treatment charting. My treatment chart is already really small font and hard to read as it is.