Chemo Infusion 3: Meet Nurse Evil
Yesterday's chemotherapy infusion outfit featured lavender hair, big purple glasses, and an "I love Unicorns" T-shirt made from a vintage iron-on transfer. I named this outfit "Becky." If it wouldn't have been too much trouble, I would have added roller skates that I could sling over my shoulder, but dragging around a big cooler is bad enough!
This time I saw my oncologist. Last time I saw her nurse practitioner and since she didn't have my file, she had to take notes on a separate piece of paper. Of course, that paper didn't make its way back into the file, so I had to give my oncologist a recap of the side effects from the first two infusions.
I pulled out my 'Kemo' Log and read off the side effects I had written down. It went something like this: "Dizziness from steroids, loopy and forgetful for several days, extreme fatigue for 10 days, nausea without vomiting, frequent migraines, extreme light sensitivity, thrush, stomach cramps, diarrhea, a variety of rashes, vertigo, acid reflux, inability to taste salty foods, difficulty swallowing, and low back pain."
She looked at me and said, "Wow, your body is really not tolerating chemo." I'll tell you, my first instinct was to take offense and object with, "I tolerate things just fine!" Good thing I said nothing, because after a moment I realized she wasn't criticizing me.
After taking a bunch of notes, she said, "The only thing you didn't mention was body aches." I caught sight of Kathy's pointed look and I said, "Oh, right. Well, I have a hard time sitting in movie theaters because my legs ache so much. Do you think that's related?" She nodded slowly to underscore the obvious.
As she approached me for the physical exam, I was concerned that this was sounding like too much of a downer. So I offered up, happily, "Well, at least I don't have neuropathy and my eyes aren't streaming!" She gently put her hand on me and said, "Um, that still could happen." Oh, well.
She made some changes in medications (the ones I take in the days after chemo) to try to get a jump start on problems that we know will develop. Looking at today's blood counts, she said that some of my tiredness was because I've become anemic, so she called ahead to the infusion center to prescribe an injection of Arinesp, a red blood cell booster. She said that I'm probably not going to feel the difference for a few weeks, but we may as well start treating it now.
Kathy and I then headed up to the infusion center. The waiting area was crowded; apparently they were backed up. We waited over an hour, giving us time to eat the sandwiches we brought. We're now clear that the lunch volunteers will never show up on the days I have an infusion, or they will forget to come by my chair. It's just how it goes. The extra wait also gave us enough time to read all the flyers for support groups, classes, and events...and notice that they were mostly expired. Huh.
Lucky me, when I was finally assigned a nurse, I was given Nurse Evil. I could call her Bossy-Crabby-Chemo Nurse, but Nurse Evil works just as well. She was some piece of work. She clearly felt that the vital signs nurse (as I refer to her) was getting in the way, so she snapped, "Take her blood pressure quickly!" While the vital signs nurse leaned over me, I whispered conspiratorially, "Exactly how do you take blood pressure 'quickly'?" She whispered back, "You just say 'yes, ma'am!'" She rolled her eyes. That told me that Nurse Evil was probably the terror of the staff. I later heard her complaining loudly to the other nurses and refusing to do anything that would help them out. Yikes!
Next, she was annoyed by the fact that I couldn't have the IV fed into my hand, where it would have interfered with the ice mitts. Apparently, she doesn't like to do it in the forearm. After a few painful and unsuccessful tries to insert the IV, she said that if it didn't work the next time I'd have to get someone else to start it, because she certainly wasn't going to do it. I think she was offended that I was bleeding. She was also very up front about how she felt my ice treatments were ridiculous and she seemed to think the whole thing inconvenienced her a great deal. I suppose that's because she needed to do outrageous things like alert me 15 minutes before she started the flow of Taxotere.
Was that all? Of course not! She didn't like the fact that I wanted Kathy to stay with me. You know how when they show chemo infusions in movies or on TV, friends and family get to be with the patient? I don't know if it's the UCSF infusion center or what, but it has never been that easy for me to have Kathy sit with me. Most patients are there alone and there are only a couple of patient spots in each room that can even accommodate having a guest chair placed next to them. Guest chairs are always the uncomfortable chairs, too, shoved between the infusion chair and a glass wall. Nurse Evil made sure to make lots of exasperated sounds whenever she approached, no matter how far Kathy scooted herself back.
When we started, I requested that I skip the Ativan before the infusion. I did this because Ativan combined with 50 mg. of Benadryl made me way too loopy in previous infusions. I can't say that doing without helped hugely (that's still a lot of Benadryl for me) but it did help a little bit. Though, honestly, I almost wished I could slip the anti-anxiety meds to Kathy, as she bore the brunt of Nurse Evil's wrath. In retrospect, I suppose it's good that the nurse almost never checked on me during the infusions.
The one good thing is that I saw the patient that I had met the last time I visited the infusion center (for IV fluids). It was good to see her. We chatted until the Benadryl overtook her. She told me that she was going to a UCSF center across the street for complementary care, like acupuncture and massage. I had never heard of it before. She said, "I know, I keep telling them they have to inform more patients about it, and they say they do, but...." We exchanged that knowing look that UCSF patients share.
Her nurse was good but overburdened with patients who had serious difficulties, so I was Little Miss Helpful and would get up to find her nurse when she needed her, dragging my IV equipment behind me. I am always happier when I'm helping. Hmmm, kind of like a four-year old, don't you think?
By the end, we were just happy to get out of there and go home. I really wanted to rest, but because of all the steroids pumped into my system (a lot of dexamethasone) I ended up being awake all night long. But because I spent part of that time working on my pirate shadowbox, not all was lost. Even so, tonight I am taking sleep medication for sure.
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