If you don’t want the gory details, the short story is that I experienced the first week of chemo as having a bad case of the flu. The second week was better. I knew I’d been sick, and that I was getting better, but still wasn’t at 100%. My hair started falling out on Day 14. The third week of chemo is when I felt like my usual self, except bald. It was a time to catch up on some of what I couldn’t do in the first two weeks of this process, and also a time to prepare for Chemo Round Two, which starts on Day 22 (January 6.)
Day 1: The Encinitas Cancer Center Infusion Bay is a model of good design and very appealing aesthetics. The bay has about 2 dozen reclining chairs spread throughout the room and is set up so that you can draw the curtains for privacy or chat with your neighbors. Each recliner has a guest chair so that someone accompanying you has a place to sit and be with you. A nurse assistant brings you from the reception area and gets you settled with pillows and a blanket, adjusts the blinds and lights, goes through Chair 101 to show you how to get up and down, recline, lock, etc., and how to walk with your IV when you need to use the restroom. The nurse assistant takes your blood pressure, temperature, pulse, and then turns you over to the nurse who inserts your IV, starts your hydration fluids, then pre-meds (mostly anti-nausea drugs), then chemo drugs. I get about 6 hours worth of this on Day 1. Even though I normally drink at least 8 glasses of water a day, the extra hydration is something you never turn down because it really helps cushion some of the immediate chemo side effects.
A physicians’ assistant and a pharmacist individually spend time with each patient going over your meds, side effects, other symptoms, vitamins and supplements, etc., to make you as comfortable as possible during this process. They spend as much time as you need to get all your questions answered (you know I had a lot of questions, especially about how all these new drugs were going to impact the vitamins and meds I’m already taking and how to work with them). These folks were just wonderful, and actually that’s how I’d characterize the entire operation. Without exception, everyone here has been bright, cheerful, thoughtful and genuinely interested in helping.
Although confined to the recliner for many hours, I bring my lap top and work from there. Jess and I bring bottled tea and snacks, and constantly affirm that this process is all a “piece of cake”. After it’s finished, we stopped on the way home at the health food store and got a sandwich and a piece of cake for a late lunch at home. Took a nap and then progressed into our evening. I didn’t actually have any side effects to speak of except that the Dexamethasone that I take the day before chemo and also get during infusion kept me awake most of the night, not wild or wired, just awake.
Day 2: Return to the Infusion Bay for more hydration via IV, followed by the Neulasta injection, about 3 hours in total. And again, I was able to work on my lap top during the process. That afternoon I started to notice smells of food that would normally be okay starting to smell offensive and took the anti-nausea medication, which settled everything down. I found that I was offended by the smells of cinnamon, nutmeg, curry, cumin, chili powder… all things I’m usually just fine with. On the other hand, garlic and Italian spices were not a problem at all.
Day 3: I experienced intense bone and joint pain from the Neulasta injection which speeds up white blood cell production in the bones. This is given to counterbalance the chemo drugs, which depress white blood cell production, lowering the immune system response and increasing risk of infection. At this point, most food odors smelled obnoxious, I needed the anti-nausea meds and Tylenol for pain. I needed 3 long naps during the day, and was dozing in front of the TV by 7:30pm.
Day 4: Now all the flu symptoms (chills, fever, aches, swollen abdomen, bone pain, fever spikes) were present. The paperwork they hand out says call the office if your temperature goes to 100.4. I did, and my nurse case manager said not to ignore it and go to the ER if it doesn’t go under 100 degrees over the weekend. Using the Tylenol, I was able to get it back down, only to have it creep back up repeatedly. But going to the hospital (a germ-infested environment if there ever was one), with a suppressed immune system, to have them run tests to determine if my fever is being induced by chemo reaction instead of infection, just didn’t seem to make a whole lot of sense to me. Since spending hours hanging around an ER is not my idea of fun, and I also didn’t know if my insurance would cover it, I took that Tylenol every few hours and saw the temperature go down enough to be pretty sure it was not an infection. This was another day that I needed 3 naps, and an early bedtime.
Day 5: I felt much better today, the flu symptoms were abating, although I still had intermittent chills and was feverish off and on. Days 3, 4, and 5 were spent mostly on the couch reading. My mind and attention span weren’t up to work at all. I took 2 naps.
Day 6: I felt even better today until late evening when the bone and joint pain returned with a vengeance. This was as intense a pain as I’ve ever experienced and I have a pretty high threshold for pain. I took 2 Vicodin at 3:30am, and slept until 8am.
Day 7: Only needed 1 nap today. Experienced a touch of nausea mid-afternoon. Took the Ondansetron for that and quickly felt better. The entire inside of my mouth feels like I burned it eating a hot cheese pizza.
Day 8: Took 2 shorter naps today. The inside of my mouth still feels burned. This is the first day I have not needed any anti-nausea drugs. My nose and eyes are running as if from allergies. This actually started on Day 4 and has gotten progressively worse. My nasal passage tissues are shredded and bleeding. Dr. Subramanian suggested Vicks on a Q-tip swabbed inside the nose. I tried that, and also Ponaris, which is a nasal emollient. Both helped a little, but not much.
Day 14: Sunday, my hair has started falling out – about 2 or 3 strands every time I ran my hands through it. By Monday, that was 6 to 10 strands every time. After my weekly blood draw (checking white blood cell counts), we stopped at Great Clips and had it cut into a very short pixie style to transition. By Saturday, you could easily see sections of scalp through my hair and Jess shaved it off for me. We went shopping for a couple of hats and scarves to cover my now very bald head.
Day 15 – 21: This is the week that feels sort of normal. I tried to catch up on everything I hadn’t been able to get to during the first two weeks of chemo, and tried to prepare for the next round of chemo. That meant heavy-duty cleaning and housework, extra laundry, menu planning based on the records of what I had, and hadn’t been able to eat during the first two weeks, trying to set up get-togethers with friends so that we don’t end up spending 6 months in isolation.
I am so appreciative that a friend who has dealt with breast cancer for years strongly suggested I keep this chemo diary. Every one reacts differently to these drugs, but typically the reaction you experience the first time is likely to be repeated with subsequent doses, it makes it easier to have a sense of what is likely to come next, how I’m likely to respond to it and how I might be able to mitigate it. Also, with chemo comes something referred to as “chemo brain,” a mental state that makes it hard to stay focused and present, and negatively impacts short-term memory as to what symptoms were experienced when. My doctor found it really useful to keep track of my progress and better fine-tune drugs and suggestions based on this diary. I also did a page of daily temperature readings, which enabled the doctor to tell at a glance that the feverish spikes were in fact caused by the chemo drugs (and not by infection), and that they clearly responded to the Tylenol.
I’ve been told that each round of chemo tends to take more out of you and that the cumulative fatigue can cause unexpected side effects. I get it. But that doesn’t keep me from wanting to look at ways to offset and mitigate the experience to the best of my ability, both for myself and anyone else who might be helped by it.
I'm learning more about my art, and from my art, every day. It's not so much a matter of skill or practice... mostly it's a shift in perspective, a way of shaping how I look at and exist in the world.
Other Great Sites: