May 16, 2023
Intravenous chemotherapy is an exercise in patience, meditation, and fortitude. I can say that easily now that it is 104 days in my rear view. On October 26, 2022, I had no idea what it was all about. I was terrified. I was well aware of all of the possible side effects, but it was a wait and see approach to what would actually happen to me. The promising news was since I tolerated the oral chemo, capecitabine, so well, I potentially could do well with these IV drugs given their similarity.
So like any other day, I began the day with breakfast, did a workout, showered and did my hair and makeup. I choose a cute plaid button up for easy port access, skinny jeans, and knee high boots. If I had to do chemo, I would do it with my style.
We arrived at Northwestern prior to my 2pm appointment to find out that the clinic was already running behind, something that is the status quo. For a gal who is always fifteen minutes early, I would have to learn to take deep breaths, relax, and go with the flow. A visit with my oncology PA to prep for treatment, then a port access visit, followed by admission to the infusion clinic. Height, weight, vitals and then settle into my semi-private suite. Finally, at 4:30, after waiting for the pharmacy to deliver my meds, we began treatment.
My first visit blessed me with an amazing nurse, J, who greeted me warmly, with humor and knowingness. He answered all of my questions and walked me through every medication administered:
dexamethasone: Steroid to reduce inflammation, suppress immune response, enhance effects of other drugs
palonosetron prevents nausea and vomitting associated with chemo, lasts for about 48 hours in the your system
leucovorin calcium injection and oxaliplatin are administered simultaneously for approximately 2 hours, these are the tumor fighting drugs
fluorouracil was then put into a small pump, about the size of a Gameboy, if you are old enough to remember those, and was administered over the next 46 hours as I returned home
As I sat the duration of these two plus hours of infusing, I waited for something to happen, but nothing did. I watched TV, responded to texts, puttered on my iPad, made the journey to the bathroom with my infusion system, and chatted with my husband. I ate snacks, drank room temperature water, then switched to hot tea. Every now and again, I would close my eyes and think, “I am safe, I am grounded,” a meditation I picked up at the outset of this diagnosis and repeated to myself every time I felt scared.
Head’s up, the cold sensitivity caused by oxaliplatin is real! Cold food and beverage is a no-go for the first few days after chemo. Breathing in cold air is like little ice shards in your throat, so face masks and scarves are highly recommended if you get the distinct privilege of doing chemo during the winter in a climate like Chicago. Once that oxaliplatin starts circulating in your system, keeping things warm becomes an occupation.
David and I closed the infusion clinic that night. We were one of the last patients to leave, a quiet waiting room biding us adieu as we went out into a beautiful Chicago autumn’s night. I was exhausted and anxious. So I grounded myself in my bedtime routine: wash face, brush teeth, read. I got as far as brushing teeth when my lips began to quiver involuntarily, and then the lower portion of my face went into spasm. By the time I was on the phone with the after hours answering service, my hands were cramping.
My oncologist called me back, surprised that these side effects took several hours to present, but nonetheless, here they were and they were normal. She advised I drink an electrolyte drink and stay hydrated. This would pass. I mixed up some Magnelevures, my favorite magnesium supplement, and situated myself in bed. I set my pump, whom we later named Herbie, on my left side and surprisingly, fell fast asleep.
The next morning, I woke up and called my parents to tell them how my first chemo went. To my surprise, my voice quivered. I thought at first that it was because as I was tired, but as the day wore on and my voice continued to sound shaky, I realized this also was a side effect of the medications. For the next 48 hours, I ate well and watched a lot of HGTV. I kept up with work, discovering that my hands would cramp while trying to type. I ordered three different types of gloves to protect my hands: driving gloves, typing gloves and compression gloves. Approximately 24 hours after my initial infusion, a rash appeared under my eyes. It lasted for a day and was probably related to the dexamethasone.
I figured out how to navigate my days with Herbie, how to bathe in a shallow bath with Herbie set on the floor outside the tub, where to position Herbie when I was on the toilet, and most importantly, how to keep me two loving cats from walking or laying on my pump, or laying on my port site that Herbie was plugged into.
On the Friday after chemo, feeling fairly back to normal, I dropped in on a few customers before going to the hospital to be disconnected from my pump. The pump is not easy to hide, and it makes a little noise like a cassette player. The pump lent itself to awkward interactions despite my best efforts to act like it was no big deal.
My work allows me to meet so many different health care providers and I get to learn from their expertise. A colleague who had previous experience in colorectal cancer advised that I request IV fluids at the time I was unhooked from the pump. This was not standard protocol and I am glad I asked for it. Every time I went to get unhooked from Herbie, I received a bag of saline to help rehydrate and take the edge off the fatigue that was about to drop in my lap for the weekend.
That weekend, David and I took it easy, replaying the experience and giving thanks that given the circumstances, treatment number one went fairly well. I prophylactically took ondansetron on Saturday, realizing that by Sunday I really didn’t need it. By the time Monday rolled around, I was ready to get back to work knowing that I only had to do this seven more times….
Items I packed in my backpack for every chemo appointment:
Mom’s Homemade Chex Mix
Room temp water
Tea bags, ginger and peppermint
Fresh fruit
Peppermint Oil
Ipad
Magazines
Headphones
Blanket and pillow (both given as gifts from dear friends)
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