How to Chemo Practically
My dear darling sister Jen sent me a care package just before I began chemo for my second cancer. She didn't ask me what I remembered from the first time — most likely not wanting to bother me — but researched side effects and remedies on her own. She read about mouth sores and dry mouth and dry skin, and I got a box jammed full with Purell, Biotene, and lush hand cream. After chemo was over, I donated all these unused, unopened boxes at the nurses station in the infusion room, hoping they'd come in handy for someone later.
It's impossible to predict exactly what side effects you'll suffer during chemo. Every cocktail is different, every person is different, every infusion directive is different. In my experience, there are some standards you can count on, and then some personalized issues that chemo exacerbates. In 1999—through four rounds of the Adriamycin and Cytoxan (AC)—I had searing, unbearable teeth pain, to the point that I supped daily on mashed potatoes because chewing was too hard. This is why they advise getting dental work before chemo: I needed my wisdom teeth out but didn't know until after. Then in 2015 (six rounds of TCHP aka Taxotere, Carboplatin, Herceptin, Perjeta) I had nose bleeds. Multiple daily, disgusting, faucet-flowing nose bleeds for minutes on end. Not a standard side effect, no one really knew what to do; eventually I saw an ENT doctor who cauterized the nostrils. I wasn't panicked though, I have always been a nose bleeder, I used to joke if someone looked at me too hard I'd bleed. Chemo finds your weak spots.
It's hard to draw a definitive practical guide to chemo, but after 7O someodd hours in the infusion chair, I have some insight into what to expect.
PLANNING
Anticipate The Program. Typical chemo prescriptions range anywhere from 4 to 16 infusions every three weeks, so you could be finished in three months, or committed to a year of infusions after stand-alone Herceptin drags it out. Most chemos are given every three weeks, to enable your body a chance to recover before the next hit. The nadir—the point when blood levels are at their lowest, leaving you most vulnerable to infection—is about 1O days after infusion, but may not match how you feel. With AC, I felt fairly normal after about four days, I didn't even notice the nadir. But with TCHP the nadir was the finish line I had to crawl towards. I always scheduled my infusions for Friday, ensuring I had at least the weekend to recover with little or no missed obligations.
Preventative Measures. I never tried a cold cap to prevent hair loss. I have heard anecdotes both that it worked and that it failed, so while not a full-stop prevention it may be worth the gamble. I always suggest wig shopping before hair loss starts, as it will be easier to match to your regular self. I never found a wig I liked enough to wear regularly, although I rocked fun blue and blonde ones on occasion. I wore scarves and wraps and buffs out in public, purchased online in advance and along the way.
There are other steps to potentially minimize side effects before they start, the medical team should report which are most likely to help. Neuropathy might be headed off with ice baths, acupuncture may be most effective beforehand (I never found it useful in the midst of the badness). Some patients are directed—or choose—to get an IV port surgically inserted rather than having an IV manually hooked up each time. I only had a port the second time, although it probably would have made sense the first time since risk of lymphedema dictates that needles can only go into the unaffected side, limiting the options and straining the veins. I was glad to have it the second time.
Clean and stock up. Or rather, get someone to do it for you. Take advantage of offers to deliver dinner or groceries, let people help. They may pitch in for a cleaning service, or you can apply yourself to Cleaning For a Reason. Through them I was connected with the local free service for four visits, then long-distance friends donated to keep it going. I scheduled cleanings for the hours I spent in the infusion chair, so when I got home to recuperate the house was spotless.
Feed Your Senses Carefully. A small word of warning. The day of my first chemo treatment ever, my mom treated us to take-out from my favorite lunch spot, located in the lobby of the oncologist's building. We brought it home to eat after and I devoured the Salad Trio—featuring my all-time favorite chicken salad—happy and surprised to have an appetite and enjoy food. Within a couple hours, I was vomiting more than I had in my entire life. I never ate that chicken salad again.
The visceral reminders of chemo lingered on all sorts of items, dietary, utilitarian, and fashionable alike. One fragrant hand soap that once filled every container next to every sink in my house had to be dumped out afterwards. Scarves are shoved back in drawers, possibly never to be worn again. I have a long Athleta shelf tank that was my chemo top—comfortable layer, easily accommodated the port, pockets for my phone—that remains unworn since. Perhaps it's time I tossed it; it definitely doesn't bring me joy.
ENDURING THE INFUSION CHAIR
Figure your time frame. It all depends on how many drugs are in the cocktail. Most bags take 3O-45 minutes to infuse, although they may drip slower in the beginning to watch for allergic reactions. Not surprisingly the second round with four drugs kept me in the chair a lot longer than with only two; in 1999 it was less than 4 hours, 2O15 was about 6. There are also steroid, anti-nausea, and saline bags that figure in to the pipeline, not to mention other patients and nurse tasks to slow things down.
Plan your time. Most of the times I went, someone stayed with me the whole time. My mom, my husband, my dear friends Jenna or Susan — each helped me pass the time or simply kept me company as I snoozed or fished Facebook for jokes. Sometimes I was on my computer working, distracting myself with simple tasks and productivity. Make it fun or make it quiet, change it up or do it the same the whole way through. But a driver is needed no matter what; I was beyond dopey on the way home.
Pack a bag. Nibbly snacks, refillable water bottle, magazines, books, puzzles, fuzzy socks, computer, phone, chargers, headphones, sweater, playing cards, knitting, journal and pen. Things to pass the time, and enough varying things so that you're not stuck with a finished newspaper for 4 hours. Cozy things since the infusion room is likely to be chilly, although my favorite infusion room gave me a heated blanket. Easily digested bite-sized food (graham crackers, granola clusters, simple cereal like my beloved Honeycomb) and water, water, water to keep the nausea at bay. Sometimes I'd dip into the good room's fridge stocked with juice, yogurt, and applesauce [compared to the mini-fridge at the lame infusion room that was labeled REFRIFERATOR in two separate locations]. The good one also had a jar of sucking candy, which I can't recommend highly enough because most drips can be tasted, a highly unsettling and unpleasant sensation. I lived on lemon drops, but butterscotch was a close second. I also packed my Wonder Woman doll in my chemo bag. Did I mention water, water, water?
Choose your spot. I've been in three different infusion rooms, with different vibes and set-up. In 1999 it was a fluorescent side room at the high-rise offices of my downtown Chicago oncologist. There were four infusion chairs, and we were all kind crammed in, facing inward at each other. To get to the bathroom, I had to exit the room and turn multiple corners to vomit profusely mere feet from the waiting room. In 2O15, I had my choice of two locations. The one in my town was in a dated medical building of a different oncologist. Although there was a lot of space between the six chairs, they all faced the interior walls, where the TV always seemed to be on morning talk shows, and the only other views were of the female nurse Jeffry at her desk or the Refriferator. I chose instead to drive 3O minutes to the charmingly-named Fountaingrove facility where my oncologist practices. We drove up a hill past the historic Round Barn (since burned down in the wildfires) and parked underneath towering eucalyptus trees. The infusion room itself had a couple dozen chairs spaced across a bright, expansive room, and there were no TVs at all. Every chair had a view out of a tall window, down across the hills into a stretch of misty vista.
When I arrived on chemo day, they assigned me a side of the room and a nurse on duty. On each side I had favorite chairs based on what I'd be doing that day. Jenna and I enjoyed a roomy corner so we could have space to play cards. If I was going to be working, I chose a chair farther from the window, to not take a choice view from someone who wasn't distracted by Photoshop. If I thought I might sleep, I'd choose a chair that had fewer people around it. I liked to change it up, but others seemed to always park in the same spot.
Anticipate the Weirdness. I've already mentioned the taste, but there are other parts of the infusion that arouse senses you may not expect. A coldness in your veins, tingling in various locations, itchiness or slight burning. Different drugs do different things, and a nurse will likely guide you on what you are about to feel and where. The Red Devil, Adriamycin, is the worst in all respects: it has a slight burn, a bad taste, and genuinely makes your sphincter itch. Twenty years later I can still summon the sensation. Be vocal about every feeling that unsettles you; either they'll tell you it's normal or determine you are having an allergic reaction, which happens on a rare occasion. Don't suffer the oddities in silence.
THE AFTERMATH GREATEST HITS
Ride The Cycle. Some chemo side effects are cumulative, getting worse each infusion. I found that to be true with the AC; by the last of four infusions I was vomiting with the IV still attached. Typically the worst of the side effects ebb by the nadir, and you may feel close to normal for the remaining 1O days before the next treatment. TCHP was pretty standard all the way through, and it got so I knew exactly what to expect and when. You may want to take notes in the beginning to track your experience, to remind you next time what is usual for you and when to worry. I ran a slight afternoon fever for a few days after infusion and initially I panicked. I was instructed to call immediately with any elevated temperature that could indicate infection; I was then put on an unbelievably strong antibiotic that nearly ripped my calf muscles (crazy, right?). I didn't complete the antibiotics, realizing it was not actually infection but a mild temperature that would resolve without panic. Eventually I stopped taking notes, finding it more empowering to lose track of every tiny change and just get through each day as it came.
Nausea. It's hard to avoid this one, but it can range from mild queasiness to horrible vomiting. There is relief to be found through prescribed medications, and through typical remedies used during a stomach flu: ginger, hydration, calming teas, nibbles like crackers and pretzels, simple broth. The strategy is to never leave your stomach empty, and to flush the system as much as possible with water or Gatorade, and watery foods like grapes and watermelon. Eating is so important but may be a challenge; the primary goal should be getting food and water in, whatever sounds good is acceptable. I tried acupuncture during the AC, but it didn't even touch it. Through both bouts, pot was the main solution to help gain an appetite and keep the nausea at bay. It had the added benefit of helping me sleep. I was prescribed the synthetic Marinol in 1999 and didn't like it, but, as with anything, your mileage may vary.
Fatigue. This was so bad for me the second time I had to say the word in a French accent to expand its meaning. I wasn't just tired, I stopped caring about anything else but lying down. I both gave into it and I battled it constantly. I allowed myself the space to head back to bed any time it called for me, and I forced myself to get up and go for a walk every day. Some days it was a 1O minute cruise around the cul-de-sac, on great days I managed 2O minutes or more. I am certain that both tactics are key: our bodies need time rest when under such assault, and exercise helps the system keep pumping and flushing the toxic crap out. I always felt during these little walks that I was sending my body a message: Come on now, time to move on.
Hair Loss. If you're going to lose your hair, it won't start happening until after the second treatment, by nadir-time. It will start slow, groups of strands spied on your pillow or in the shower. It will ramp up over days until it comes out in chunks in your hand. For me the best way to handle the loss was to take control, rather than enduring it in real-time. It also gets itchy and almost painful, so getting it out is a relief. I wore a short chin-length cut for a few days, then shaved it off. Both times my husband helped me shave, which was partly practical since he shaves his head normally and knows what to do, and partly just loving me and wanting to be with me. I can't lie, it's traumatic and scary and hard. But it grows back. It's temporary, just like chemo. This too shall pass. Ain't nothing but a thing.