What chemo alumni know is that the side effects usually come hours or a day after the infusion. I felt a bit peakish before every infusion, so I asked for saltines or ginger ale at the start. One time, I asked for Tums. There are lots of knowledgeable people to help in the infusion center.
When my sister started seeing her treatment loop pitches in 2003, she was positively flattened by nausea and vomiting by the first night. It was traumatizing for her husband, me, and her. My biggest fear was having the same type of reaction as my sister, and to make the treatment pitches less nauseating, I had to stay ahead of the nausea.
It’s a funny thing to treat yourself for symptoms you don’t have because by the time you have symptoms, it’s too late. When I’ve had to rehab from an injury, my physical therapist and doctors advised me to stay ahead of the pain (and inflammation) by taking anti-inflammatories on a schedule. When my children were babies, I (mostly) stayed ahead of the tears by putting them to sleep before they were’s the same idea with chemo.
With chemo, you are performing a chemistry test on yourself. Will Zofran minimize nausea? Because Zofran doesn't make you sleepy. You can take the Zofran every 6 hours. If that doesn't work or if there's any sense of discomfort, take Compazine. It will make you sleepy, and you can take it every 8 hours. You should wait 3 hours after the Zofran to try it. Or, try Ativan. It will also make you sleepy, and it reduces anxiety as well as nausea. Every six hours. Remember to take Claritin 24 hours after your infusion.
Let’s see that as a table.
If I had taken them all, it would have been Zofran at 5pm, and if I didn't feel great, I was supposed to take Compazine or Ativan at 8pm. Then, if awake, take a Zofran at 11pm. Then Compazine at 4am OR Ativan at 2am. Then Zofran at 5am. Then Ativan at 8am or Compazine at noon. With a Zofran at 11am. Frankly - it's crazy making. Sleep is essential, and I needed to sleep as much as possible AND stay ahead of the nausea.
My head is already spinning with how to keep track of it when I'm not dealing with the side effects themselves. I hate being a bother to my family. And I don't like to complain.
My brother-in-law kept a detailed journal of the meds my sister took as they conducted their chemistry test. My Dad did it for my mother. Both my brother-in-law and my Dad became the medication alarm clocks. I really didn't want Neal to be logging my vomit and scheduling my meds.
After the first infusion, I found the app Max and set it up to track and remind me of my medication schedule to stay ahead of the nausea. For the first few infusions, I was pretty religious about the Zofran but didn't need anything else except the THC. I had never used THC before - something that shocked my kids and my friends. I needed it because the steroid kicked in around 4pm and made me jittery and couldn't sleep at night. THC knocked me out - but that was another chemistry test as I was a novice to the amount, strain, and delivery mechanism. Until Dr. Chien and I adjusted the steroid dosage, I found that a 5mg THC/CBT gummy with a small dropper of olive oil infused with THC was enough to make me sleepy and keep me asleep all night.
The chemo upset my GI tract and then the Zofran confused it. Suffice to say, my relationship with my toilet became closer. After week 3, Dr. Chien suggested I try avoiding the Zofran altogether and see how I felt. With some trepidation, I did it and discovered that just like my sister, Zofran did nothing for me. After week 6, with my labs looking like I wasn’t having chemo, Dr. Chien was open to reducing the steroid dose to the bare minimum. From that point forward, I didn’t need any help sleeping. And the Cinvanti had eliminated the nausea issue. Max could go on holiday until my surgery, when I’d need him to stay ahead of the pain.
That's my first treatment routine - arrive early for the port draw and hope for good labs. Get comfortable in the recliner for the day and get my scalp soaked for the Dignicap. Pre-treat for 30 minutes. Put on the ice mittens (the WORST) and ice socks. Pre-cool for 15 minutes. 90 minutes of chemo. Take off the ice mittens and ice socks. Use the bathroom (extra hydration has that side effect). Start post-treatment cooling (2 hours for me). Every three weeks, get immunotherapy during post-treatment cooling. With the natural waiting of the process, the end-to-end treatment loop was 5 hours. After a few weeks, I realized that I didn't have much else to do for 6 days that weren't chemo day, so I stepped out of the batter's box, exercised, worked, traveled, lived my life being careful about large, indoor spaces because even if my labs were good, I was still immunosuppressed.
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