Chemo Rules: Don’t leave home without
Imodium and extra underwear
Because of the aggressive nature of Inflammatory Breast Cancer, the oncology team hustled me into chemo within weeks of my first diagnosis. As a result, I missed the information class to which most patients are referred. Before long, the treatment team became exasperated with my continual questions and failures to follow chemo protocol. After they discovered that I had continued taking Vitamin C and flossing my teeth, I was referred to Integrative Medicine for a pep talk. A steep learning curve awaited.
Early on, I adopted an unorthodox approach to side effect management, which is that I didn’t want to know. Concerned that the power of suggestion might create or exacerbate symptoms, I opted for minimal information. If a potential side effect popped up, I asked my sisters to research on my behalf. This strategy worked remarkably well, and whether for this reason or others, I didn’t experience the most debilitating symptoms that chemo can deliver. When I received my second diagnosis, the oncologist scheduled a meeting to discuss side effects of a new chemo regimen. He laughed when I told him I preferred to opt out of the discussion. “But that’s what we do,” he protested, at what became a short appointment. As a cancer survivor himself, I figured he would understand that sometimes ignorance is bliss, or at least best.
Everyone knows that chemo for breast cancer causes baldness, but that’s only the beginning. It slowly dawned on me that chemo didn’t just eradicate the hair on my head, but everywhere else on my body too. The first chemo cocktail that went down the hatch was Adriamycin and Cytoxan, also known as the Red Devil, which wastes no time separating a person from all body hair. Its moniker comes from the red color and malevolent side effects although, to be fair, Red Devil fights cancer with a fury and possesses near-miraculous powers to dissolve outsized tumors. It may be a brute but Red Devil plays to win and scored big for me, eradicating tumors that measured 13 cm, 7 cm and 2 cm at the time of diagnosis.
A few weeks into the Red Devil regimen, I sat at my kitchen table and noticed thousands of tiny hairs escaping my scalp, falling onto the laptop keyboard like rain. I’d already shaved my head but now that the chemo engines had revved up, the hair follicles completely let loose. It all came off; eyelashes, eyebrows, the hair under my arms and on my legs, and all pubic hair as well. Having spent a total of 12 months of my life in infusion chemo, I saved a lot of money on hair products and substantial time on body hygiene. No need for razors or waxing!
Chemo famously causes nausea but, these days, it is mostly controlled by pre-meds delivered directly into the port at the time of infusion. The medications were so effective that I never once vomited during or after 36 rounds of chemo. Still, a peculiar mix of nausea and dizziness persisted in the hours after I left the hospital. Following my first infusion of Red Devil, delivered slowly to ensure I didn’t have an allergic reaction, I stopped at Trader Joe’s on the way home. I felt like I was walking along the deck of a sharply-tilted ship, and the product shelves appeared to lean at the angle of the Tower of Pisa. I couldn’t convince myself that I was standing straight up. As promised, the Red Devil packed a punch.
After a few infusions, a strange phenomenon developed. Driving to chemo, I felt nearly as nauseous as I had at Trader Joe’s a few weeks before, although not a drop of the Red Devil had yet entered my veins. My mind had created an exact replica of chemo-induced side effects, which I found fascinating, if not somewhat disagreeable. I was so enthralled that I remarked upon it within earshot of the infusion nurse. Before long, a pill appeared in a tiny cup. It was a benzodiazepine, prescribed for anxiety. I declined the medication but continued to marvel over the power of the mind. Known as “anticipatory nausea,” this phenomenon is common among cancer patients. An oncology nurse told me she knew of patients who became nauseous while driving by the hospital even years after treatment concluded. Recently, I heard a familiar sound as I loaded groceries into my car; a piercing beeping noise that emanated from across the street. Before I could identify its origins, nausea descended like a fast-moving storm cloud. Within seconds, I realized the noise came from a nearby car wash but it sounded exactly like the alarm on a chemo pump, something I had heard hundreds of times during infusion.
Before I started chemo, the pharmacy messaged that a flotilla of prescriptions awaited pick-up. Two types of anti-nausea medications were in the mix, and I quickly realized that there would be no free ride. The side effect meds came with their own side effects. In the early weeks of Red Devil chemo, I overdid it with the anti-nausea medications. I’d been warned to “stay ahead of the nausea,” and indeed the medication proved useful. However, it also turned my guts into rocks and caused severe constipation. Ultimately, this led to a weekend call to the triage unit, where it was recommended that I imbibe a concoction of liquid magnesium citrate, prune juice and melted butter. “It’s what they use after intestinal surgery,” the nurse claimed encouragingly. After that, I dialed back on the prescription meds. Supportive family members had mailed a box of Vernors ginger ale from Detroit, and it became my “go-to” for nausea. Turns out my great-grandmother knew best; Vernors handled it just like Grandma promised.
By the time I finished chemo, my cabinets were littered with both imodium and miralax because side effects were contradictory, swinging from one end of the digestive continuum to the other. If it wasn’t constipation, diarrhea stepped up, such that I never left the house without a packet of imodium pills and extra underwear.
Red Devil notoriously causes mouth sores, which in severe cases makes eating impossible. I religiously upheld the recommended routine of swishing with water and baking soda three times a day, which held at bay the worst of the sores. Along with my fellow infusion patients, I relied on the godsend that is Magic Mouthwash, a thick, pink brew that is prepared on-site by a pharmacist and coats the mouth with a fibrous concoction that feels like cotton. It got the job done even though I felt like I had chewed on Pepto-Bismol colored fabric. I couldn’t wait to brush my teeth due to a bizarre sensation that all my teeth were clothed in tiny T-shirts.
The treatment team helpfully scheduled Red Devil infusions on Wednesdays so that the “down days” would occur on the weekend, thereby preventing lost time from work. The first few days after treatment, I felt mostly normal, but by Friday afternoon an anesthetizing fatigue would descend, dense as a thick fog hugging the coast. The exhaustion paired poorly with steroid pills, which were prescribed for several days following infusion, resulting in a peculiar buzzy sensation. Dragged into oblivion by the undertow of intense weariness, I simultaneously felt jumpy while the steroids whizzed around as if playing pinball in my bloodstream. Props to Red Devil!
Having wrestled me onto the couch for a day and a half, Red Devil would eventually loosen its grip, and I would rise again by Sunday afternoon with a few hours left for laundry and household chores. Just in time, I’d be ready for work on Monday morning, as though nothing had ever happened.
Nighttime dreams are always strange, but any trace of a narrative disappeared for much of the time I was on chemo. My dreams dissolved into a series of blinking objects, such as roadside hazard markers that flashed monotonously through the night. Devoid of a storyline or the presence of people, the freakish images left me with a perpetual sense of having slept poorly. Immensely relieved when normal, oddball dreams returned, I vowed not to take them for granted ever again.
Because chemo compromises the immune system, the treatment team kept a constant vigil for any signs of infection. This resulted in a prohibition on flossing my teeth, to prevent a bleeding gum, but I couldn’t abide by it. A dedicated flosser for my entire adult life, my teeth felt like wood if I didn’t floss. With a sigh, my doctor agreed that I could continue my dental hygiene routine. Although dental appointments for routine teeth cleaning were off the table during treatment, chemo has a reputation for causing dental problems years into the future. Any dental appointments missed during chemo will likely be made up for later.
Developing an infection during chemo may become life-threatening and frequently requires hospitalization. Therefore, other strongly discouraged activities included manicures or pedicures, going barefoot, or hanging out in crowds. I pushed the limits by attending a July 4th fireworks display at the park, but sometimes cancer encourages bold moves. This event being before the pandemic, there were no COVID concerns, and I took what was then an unusual precaution of wearing a surgical mask on the local light rail, where I squeezed cheek-to-cheek with other fireworks enthusiasts. Fortunately, I escaped illness and arrived home with splendid memories of glittery colors exploding in the sky.
The team didn’t approve of my exercising at the gym because they are “too germy.” However, throughout my first treatment experience, I continued to attend boot camp classes. I adored my instructor and gym buddies and the challenge kept me feeling healthy and like my “normal” self. By the time of my second diagnosis, the pandemic had settled in and I didn’t risk the gym. Public swimming pools were off-limits, and even a family pool used by relatively few people may be risky. I observantly followed the mandate to change out cat litter while wearing a mask and gloves.
Although I have rarely seen it discussed outside of breast cancer circles, chemo devastates fertility and sexual functioning. Younger women who hope to bear children must act quickly to preserve fertility before starting chemo. This is a massive added stress in the wake of a cancer diagnosis, demanding quick decisions and the likelihood of painful procedures in the midst of a destabilizing health crisis. I know several women who were diagnosed during pregnancy, making chemo a delicate balance as they sought to save two lives at once. Although it requires special management, women have birthed healthy babies during or after chemo. Mothers who are breast-feeding must cease in the 48 hours after infusion, as breast milk is considered toxic in the aftermath of a chemo treatment.
At age 52, I was past child-bearing age when I started chemo but had not yet reached menopause. Chemo got me there – and fast. My second Red Devil treatment coincided with the last period of my life. I dove into menopause like a rapidly descending aircraft and there was no soft landing. Hot flashes reliably swallowed me up several times a day for years, and I frequently awoke to soaked sheets after intense night sweats. Due to an estrogen-positive cancer, I took daily medications to gobble up any remaining female hormone, and thus could not use any menopause treatment that involved estrogen. I concluded that being alive trumped the aggravations of menopause.
Chemo frequently takes a toll on relationships and marriages as it almost always impairs sexual functioning. Sexual intercourse is not allowed in the 48 hours following chemo, as toxins are excreted through bodily fluids. Sex isn’t recommended during the entire time a patient is on chemo, due to the potential for irritation and infection, and women who have had chemo typically experience debilitating vaginal atrophy. This is openly discussed in our breast cancer support group, during which women frequently report abstaining from sex for years due to excruciating pain. My oncologist acknowledged that post-chemo atrophy can become “a big problem” beyond its scorched earth tactics applied to sexuality. The side effects may result in abrasions and tissue tearing after wiping with toilet paper. Without intervention, bicycling, long walks or hikes may result in pain. Women with estrogen-positive cancers cannot use any estrogen-based lubricants, and the market hasn’t many products devoid of hormones. My gynecologist decried the lack of options and products for her breast cancer patients. “You have all suffered enough,” she said.
Chemo tormented with other side effects, such as a persistently runny or bloody nose, odd bouts of hiccups, dry skin, agonizing heartburn, painful sores on my bald head, and a puzzling combination of dry and watery eyes. Chemo drugs don’t play well with chemicals that guard our eyes and I often had trouble wearing my contacts. Once, I made an emergency trip to the optometrist because pulsing lights appeared whenever I closed my eyes. They looked exactly like vintage bulbs strung along a patio. Fortunately, I didn’t have a detached retina, and chemo was identified as the culprit.
During the time I took Abraxane, my finger- and toe-nails turned yellow and came loose in the nail beds. I felt like someone had hammered my fingernails to the point of detaching but they managed to stay on, which wasn’t the case for some of my fellow patients. I found it difficult to peel labels, extract a credit card from a wallet, wash dishes or even type. For much of the day, I kept an ice pack atop my nails which significantly reduced the discomfort.
After I completed four rounds of the Red Devil, I began 12 rounds of Taxol, which caused neuropathy in my hands and feet. I’d been warned that I might lose the ability to button shirts, but the neuropathy in my hands never got that severe and disappeared entirely after I finished chemo. Still, my hands went numb, like when I had been stung by a scorpion years before, and I dropped things more often, although I was still able to type and text. My feet were another story. While I was on Taxol, I experienced complete numbness in my feet and the lower parts of my legs. For months, I felt like I walked on sponges glued to the bottom of my soles and heels. Later, when I was on Abraxane and CMF, I experienced a persistent and strong sensation that water sloshed in my shoes. Although the neuropathy disappeared from my calves, a mushy numbness persists in my feet. Even a year after my last infusion, I often feel as though I am walking through a river.
Some chemo prohibitions were counterintuitive and downright mystifying. Fearful of being vulnerable to colds with a compromised immune system, and this being before COVID-era precautions, I doubled down on Vitamin C and other supplements that boost immune health. My oncologist went ballistic. “We need this chemo to work and we must not interfere with it in ANY WAY,” came the stern admonition. Many supplements, including the commonplace Vitamin C, have the potential to disrupt chemo and reduce its effectiveness. Ditto with antioxidants, which came with a directive to steer clear of berries, something I ate on a daily basis. The treatment team kindly but firmly impressed upon me that I could not afford the slightest blunder and insisted that I check with them before taking any prescribed medication, vitamin or supplement. Once when I showed up with an herbal remedy for sleep, I saw the fury creep into my oncologist’s face. She patiently waited for me to explain, and as I watched her face harden, I anticipated the explosion. “Absolutely not,” she said. “Under no circumstances. We don’t know enough about how herbs interact with chemo.”
When the second diagnosis came and I prepared to start chemo, I dutifully packed all meds and supplements, and even packets of my favorite mushroom coffee, into a bag and handed it over to the pharmacist who worked alongside the oncology team. He examined every container, concluding that most were destined for the sidelines while I was in treatment, including the coffee alternative. I had learned my lesson. Chemo Rules.
Notes:
Chemotherapy regimen for first diagnosis:
Adriamycin, Cytoxan (Red Devil): 4 rounds
Taxol (Paclitaxel): 12 rounds
Chemotherapy regimen for the second diagnosis:
Abraxane: 12 rounds
CMF (Cyclophosphamide, Methotrexate, Fluorouracil AKA 5FU): 8 rounds
Acupuncture helped significantly with side effects during my first cancer treatment but was not available during the second due to COVID
Chemo-related nausea and appetite disruptions are discussed in a separate piece, titled “Two Summers of Eating Sand.” (to be posted at a future date).
This one really stuck to me. I can relate to most of what you discussed. from the nausea, diarrhea, the oncologist telling me I have to stop all supplements and receive all nutrients from food, which is hard to do when you feel nauseous. I remember when I first developed neuropathy. I was getting out of bed and as soon as I hit the floor i couldn’t feel my feet and my hands felt numb. I immediately called the oncology team because I thought some other potentially terminal disease was developing. I have found that snap button shirts are lymphedema and nephropathy friendly. I also wore them consistently post surgery when I couldn’t raise my arms to put on a basic t-shirt.
Thank you for your comments! I agree – those snap button shirts are handy. And the velcro ones for post-surgery. You are so right about “getting all nutrients from food” – but then having to contend with nausea.
Clare, you were SO wise on not wanting to hear about side effects before having your own experience of them. As the caregiver, I made a deal with my partner–I’ll listen and learn about all the things that can happen while you pay attention to how you actually feel. And while she had some side effects, I think the ones which could have been experienced due to expectation were lessened (different cancer, different treatment). The part about losing all body hair, not just head hair, resonates. No one told us about that, and losing eyebrows and eye lashes can be very upsetting. Losing nasal hair caused my partner to have a constant runny nose and nose bleeds. Your writing is excellent and I think all your entries are a future book. Sending our love from Michigan, N & S
Nancy! Delighted to hear from you and thank you so much for taking the time to read and comment. I know you have been through it. I so appreciate your comments and much love to you and S! Miss you!