Chemo Infusion 1: Okay, This is Strange...
Happy birthday, Johnny Depp!
Today was my first chemotherapy infusion, which meant that last night I had to start taking Decadron (dexamethasone). I know that a lot of people have trouble sleeping when they take a steroid like that, but my main side effect was vertigo. When I got up in the middle of the night, I almost fell against the wall from it. Very weird. I was still dizzy in the morning.
We packed the ice chest with the frozen mitts and slippers, along with zip bags full of ice. The hypothermia mitts only stay cold for 45 minutes and the infusion lasts longer than that, so my plan was to sandwich my hands and feet between bags of ice after that. Sounds cozy, doesn't it?
Arriving in time for my 9:30 appointment meant that I was put in an exam room at 11 am. That's how it goes at UCSF. Then you wait for the doctor. I saw the nurse practitioner first so that she could gather information. My surgeon's nurse stopped by because she had to examine me for fluid build-up, since they don't want me to go into chemotherapy with a potential infection site. She gave me the go ahead for chemo, then held my hands and said compassionate things. She's the prototype for a Good Nurse.
The oncologist came in next, along with a pharmacy resident. The resident was there so that he could watch her plan the dosing and write up the pharmaceutical orders. I was a little nervous as I heard her explain why we chose chemo for me and the benefit we expected it would give. I think she said that it might drop my risk down to 12% and I was hoping for 10%. That might sound like no big deal, but when you are deciding to have poison put into your body, 2% matters.
When I told her that I never did get the prescription for the motion sickness patch (which would have really come in handy last night!) I could tell she was frustrated. She gave me a prescription and said we could try to fill it immediately, but it wouldn't work instantly. She had me take two more Decadron tablets and then two of the heavy duty anti-nausea meds. (It turned out I wasn't given the right instructions for that.) I needed to go to the lab to have blood drawn for blood counts, eat a quick snack so that the Decadron didn't give me heartburn, and then rush upstairs for the infusion.
Through all of this, Kathy and I were wheeling the big ice chest full of hypothermia stuff. It looked very suspicious. Wickedly, I wanted to put a label on the ice chest that said: CAUTION! HUMAN HEART. However, after seeing how vulnerable the patients were as the day went on, I was more inclined to label it: NOTHING SCARY INSIDE. I'm not mean.
We were very rushed and barely got to half a package of breadsticks and processed cheese. (I know you're thinking, yum! After today, I don't think I can ever look at those things again.) We got the lab work and then went up to the infusion center.
I think they are supposed to give you a tour of the infusion center at the chemo teaching appointment, but that didn't happen at mine. I wasn't really sure what to do. I checked in and the receptionist handed me a chilled bag with my Neulasta syringe . She said that someone would show me how to do the injection for tomorrow. Then she had me go to a waiting room in the back. A nurse came to take my vital signs and then a chemo nurse came over to take me to a chair.
The infusion center is on the top, 5th floor of the comprehensive cancer center. There are glassed-in rooms (each is maybe 10 or 15 feet square, I think) along the windowed walls. Each room has vinyl reclining infusion chairs to accommodate five to eight patients, with a portable IV dispensing station and a little table next to each chair. We were able to find a chair that we could pull up next to my infusion chair and Kathy settled in.
The nurse gave me 1 mg of Ativan (which serves as both an anti-anxiety and anti-nausea medication) before I started. She wrapped a hot, damp towel around my right forearm so that she could see my veins better. I had explained to her about the ice mitts that I'd be wearing (she hadn't heard of those before) and so she was choosing a location to start the IV. A lot of chemo patients get a port-a-cath put into their upper chest that the nurse can easily "hook up" to for an IV. Those save a lot of poking. However, they didn't plan that for me, perhaps because I am scheduled for just four infusions, so the nurse had to start it the old-fashioned way. I'm fine as long as I look away. I forgot that Kathy would be watching!
She gave me IV Benadryl to start with. Allergic reactions to Taxotere are common, so that's to reduce them. We set up a portable DVD player with headphones so that I could watch Pirates of the Caribbean: Curse of the Black Pearl. Yay! Captain Jack! (Who cannot smile when he's on screen? I don't want to know them.) Kathy helped me put on the frozen mitts and slippers (brrrr!) for the Taxotere infusion, which meant that I had to have her operate the controls. I kind of looked like a harbor seal.
What I didn't realize was that they were starting me on saline only for the first 45 minutes. That meant that by the time the saline was done, I had to take the now-warm mitts and slippers off and switch to bags of ice for the actual Taxotere. I put a pillow on my lap, then set two smaller zip bags of ice on top of that. I set my hands on those bags, then Kathy put two more bags on top of my hands. She then draped big bags of ice over my feet. That's really cold.
My nurse started the Taxotere slowly since it was my first time. She told me what kind of symptoms I should report that could indicate an allergic reaction. Shortly after the infusion started, I felt this strange pain creep up my back, in two lines that were parallel to my spin. In seconds, it intensified dramatically. I really wanted to thrash about, but I didn't. Kathy said that she could see by my eyes how much it hurt. The nurse stopped the drip and called my oncologist. Then she started me on more Benedryl and more Decadron. This made me feel very unfocused and drowsy, but this is the last place where I wanted to take a nap.
She restarted the Taxotere in excruciatingly slow step-up intervals. I didn't have any more reactions, but it took three hours and my feet were hurting from the cold. We had to keep changing the ice bags to keep everything frozen. When I was finally done with the Taxotere, I almost threw the ice packs off of me.
Next, the nurse gave me the Cytoxan infusion. This took about an hour. I was tired of sitting there for so long and wanted to get this over with. Kathy and I hadn't eaten anything but a few tiny breadsticks all day and we were hungry. Another patient I know had told me that there are volunteers who take lunch orders from the cafeteria, but apparently we arrived just a little too late for that, what with oncology taking so long.
Once the infusions were done, my nurse showed me how to give myself the Neulasta injection tomorrow. She said that one of the best spots was my tummy, provided it wasn't really flat. Um, no problem. After demonstrating how to do it, she gave me something to practice with. Even so, I'm a little nervous.
When I was finally done, it was after five. The nurse said that because they are going to have to go so slowly each time (they have to do the pre-meds again, too), I will need to start earlier. Let's see if oncology can see me on time!
On the way home, we picked up some food and that helped me feel a little better. Mostly, I feel very tired and my head is strange. It's like having jet lag or being incredibly sleep deprived, where I keep forgetting what I was just thinking. My tummy is a little upset from Decadron (which I take again tonight). But no nausea, at least, not yet. They tell me that usually doesn't start until 12 or more hours after the infusion is done, anyway.
I asked Kathy if she thought they would notice at the infusion center if I bring the same movie with me to every appointment. She said, not to worry, just put it in a different case. You know, Mona Lisa Smile...starring Johnny Depp as Captain Jack Sparrow!
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