If you have never had chemotherapy, what do you think happens at the hospital during treatments and once you get home?
I only had a vague idea and reading up on it on the internet was more confusing than helpful. According to my breast cancer survivor friends, the lengths of treatments could differ considerably, and I would be sleepy for much of it (“The drugs will knock me out? Excellent,” I thought). Hopefully, I would not have to quit after the first round because of a severe allergic reaction like my beloved pastor friend from Alberta.
Each of my six “cycles” — spaced at least three weeks apart — required, at the very least three things from me: a) preparation (wear comfortable clothing; bring your own food and entertainment device and/or something to read); b) accepting help (from my trusted neighbour, who would give me a ride to and from the hospital); and c) stamina (lie in a hospital chair with an IV in my arm for six to seven hours straight).
“I am going to pretend I am taking trips to ‘the land of healing’ far, far away,” I remember telling everyone who had wished me good luck. Prior to the pandemic, patients had been allowed to bring along a support person each time. Now, only the first visit included that privilege.
Chair 19 adventures
I was glad that my retired colleague, our former College registrar, had volunteered to come with me to the cancer clinic on Friday, September 25, 2020. An unexpectedly business-like nurse first checked my vitals, including blood pressure, weight, pulse rate, and oxygen levels. It turned out that this was standard procedure, as it allowed my medical team to flag potential issues.
“You will be in chair 19 today,” another, much more caring nurse said and led me down a short hallway. The rather uninspired piece of hospital furniture featured a remote control that allowed me to put my feet up and lean back. I decided to pretend it was the chemo ward’s “hospital business class” section and sat down.
“See the smiley face hanging off the monitor? That is to let everyone know that today is your first time, and to give you a little extra love,” the nurse explained.
“Impressive,” I thought.
“You will need to unplug the monitor every time you want to use the toilet, which is around the corner,” she continued.
“So much for privacy,” I thought.
“We will also ask you for your full name and birthday every time the medication is changed,” she pointed out.
“Understood,” I replied.
When I was told that some patients had adverse reactions to one, or both, of the two chemotherapy drugs I would be given, my “inner commentator” finally shut up and let me focus on the task ahead. My right arm was warmed up with a blanket and an IV needle inserted.
Then, the nurse looked me straight in the eye. “If anything feels weird until you get out of this chair to go home several hours from now, you let us know right away, okay?” She was pleased to see me nod in agreement.
Shortly after the first chemotherapy drug (“we call it agent,” the nurse had told me), Paclitaxel, was being administered, something went wrong. Within several minutes, I felt hot and flushed, had trouble breathing, and my ears started ringing.
“I am going to faint,” I said to my friend, who alerted the nurses.
They knew exactly what to do, having called my oncologist as well to ask about which medication I should be given to counteract the allergic reaction, and at which — that is slower — speed. I felt better soon, but an extra dose of Benadryl made it tough to carry on conversations for the remainder of my inaugural trip to the “land of healing.”
In fact, had there been a quiz on any of the instructions given by the pharmacist later that morning, I would have failed it. When constipation was mentioned as a likely side effect, I pointed out that I had Metamucil at home. “That should work,” the pharmacist said, and there was always Senokot, “if it gets worse.” As a “diarrhea girl” I had never heard of this over-the-counter medication and was, therefore, confident I would not need it.
I was wrong.
In fact, I did not know at all what to expect when I returned home after my first chemotherapy treatment. Would all, some, or none of the side effects I had been told about by my oncologist and cancer survivor friends — and read about online — occur when I was “on chemo watch,” i.e., during the three weeks immediately following a treatment?
Better safe than sorry
Symptoms that are commonly associated with chemotherapy treatments, such as hair loss, nausea, and vomiting, also applied to my type of cancer.
“I have highlighted them in pink for you,” the oncology nurse had said at the follow-up appointment.
“How kind,” I thought, while the colour drained from my face.
My older sister in Germany had already pleaded with me in early September to ask someone to stay with me for the first couple of nights after the initial treatment. “I’ll be fine — my wonderful neighbour is only a text away, and she’s given me a plastic bucket already…!” I joked, much to my sister’s dismay. I promised her and everyone else who expressed their concern that I would ask for help if I needed it.
I was confident, however, that I could handle the other likely symptoms — fatigue, insomnia, mild joint pain, and a low blood count — just fine by myself. The thought of numb fingers and toes as well as changes in my hearing (“Great…! I’ll be turning into Beethoven!”) frightened my musician-self, however.
My oncologist had also warned me that chills and a fever over 38.1 degrees Celsius were signs of an infection; if ignored, they could potentially lead to death. Consequently, every time I wanted to take a painkiller (to alleviate belly pain or a headache, for example), I needed to check my temperature first.
“Do you even own a thermometer, girl?” my trusted neighbour wanted to know.
“Nope,” I admitted, unable to remember the last time I had been ill. She went to the pharmacy that afternoon and bought one for me.
“Better safe than sorry, Barb,” she said. I had to agree with her.
Overall, I was most worried about my immune system tanking after treatments, especially during the second week, as had been emphasized in the paperwork I had been given.
Most importantly, I could not afford to contract Covid-19, so I followed all the guidelines as far as hygiene and exposure to others were concerned. At the same time, I agreed with my best friend, who was receiving chemotherapy as well, that going into complete hiding was the wrong thing to do, as it would likely be detrimental to my mental health.
“Most of my patients find side effects quite manageable,” my oncologist had assured me at the follow-up appointment. “Some symptoms will get worse over time, while others will only occur after several cycles,” she said. Therefore, I was to track them every day during the first cycle (“Day 1 is the day you received chemo”) and share them with her. This would be done over the phone rather than in person, due to Covid-19 restrictions, and scheduled shortly before the next treatment.
“Sounds easy enough,” I thought.
Side effects of side effects
For the first week after my first treatment, I found it difficult to figure out which of my symptoms were entirely, somewhat, or not at all caused by the chemotherapy drugs I had been given, and/or related to the medication I was to take for two days following the treatment. Moreover, I did not want to ignore or brush off potential side effects. That had happened when I experienced bumpy heartbeat episodes in August and early September, which turned out to be caused by my blood thinner medication.
The first night after receiving chemotherapy drugs for the first time was a sleepless one. Nowhere in the paperwork had it said anything about severe jetlag (“could it be the extra Benadryl?”) and hot flashes of the finest (“I am back in menopause land!”). I concluded that it was my body’s way to flush the cancer drugs out of my system in record time. To that end, I drank even more water than usual and remembered to press the toilet handle twice for two days after the treatment (who knew?).
By the next morning, a Saturday, I felt better, much to the delight of my relatives and close friends. One of them was my retired colleague from Montreal who laughed out loud about my first “experiences in the chemo chair.” I promised her to take chocolates with me to my chemotherapy treatments. “Buy the good stuff, Barb,” she advised. “You got it!” I replied with a smile on my face.
Little did I know that this would be our last conversation ever.
My weekend walking-buddies were thrilled that I had so much energy. Both were special colleague-friends who brought along their beloved dogs.
Winston, the miniature Schnauzer, would get very excited every time his academic-advisor mom took him to see Auntie Barb (“He knows the way to your place!”). During the post-surgery recovery period, whenever we rested on a bench, Winston also could not wait to sit on my lap (“Careful, Winnie, she’s got a belly scar”) and consume some Cheerios, his favourite treat. Freya, the English Springer Spaniel, was much more interested in goose droppings, much to the dismay of her dad, a religious studies professor. Unlike Winston, Freya also did not like taking frequent breaks. I will never forget the “What is wrong with you, lady?” look on her face during our first walk together around the big lake near my house. It did not take her long to figure out that a bench inevitably meant snuggle time with dad and Auntie Barb.
What I did not share with anyone at the time was my ongoing paranoia about having to take a multitude of pills at specific times. The reason? I had forgotten that the oncology pharmacist had said to take one of the pills before 1 pm. Following the instructions on the container instead, I had taken it at supper time. Was God going to penalize this “little sin immediately” as we say in German, and make me sick? Thankfully, nothing happened. It reminded me, however, to be extra careful with timing my meals as well, so the prescription nausea medication (“take 30 minutes before you eat”) could do its job.
Sudden belly pain and vaginal discomfort ailed me throughout the next day. Was the chemo the likely culprit, or was I still healing from the surgery? Or was it a combination of both? I decided to adopt a “wait and see” attitude.
Then, things took a turn for the worse (or so I thought).
I woke up the next morning, a Monday, with a nosebleed and an awful rash on my calves. Could these be side effects as well?
“No,” said my oncologist when I mentioned it to her during our pre-treatment telephone call which the nurses referred to as “chemo review.” The oncologist explained that these symptoms were more likely to have been caused by the air being too dry in my bedroom.
“So, turn on your humidifier,” she advised.
“Consider it done,” I replied.
Getting up that morning I had also felt awfully wobbly on my feet, and my knees were screaming — had I perhaps worn the wrong shoes on the weekend when walking with Winston or Freya? No, balance issues and joint pain were indeed side effects, I read, as was my sore mouth; gargling with a homemade mouthwash soon brought relief. As the day progressed, I felt increasingly like someone (or something?) had “unplugged me,” as I would call it, and was steadily draining my body’s energy battery — for no apparent reason.
When this inexplicable tiredness got worse the next day, I checked with my cancer survivor friends. They confirmed that I was dealing with the famous “chemo fatigue,” best described as an energy war of sorts going on inside me. In fact, the nurses had given me an entire booklet with information on the topic which I found difficult to read, and not just because of the heavy content (“these sections could use some copy-editing”).
My trusted neighbour suggested — and my cancer survivor friends concurred — that I should “rally my external troops.” In other words, I was to combat my symptoms with lots of rest, gentle exercise, a balanced diet, and a cheerful, optimistic attitude. My top-hatted guide agreed.
According to my diary entries this strategy worked: two “good” days followed. In practical terms this meant that I had enough energy to do stretching exercises with my twin sister; go for a 30-minute walk each day; take my car for a short spin on the highway; and play the organ at church for half an hour for the first time after my surgery.
“Aren’t you overdoing it?” my worried relatives asked.
“You don’t understand,” I said. “This first week has taught me that a Carpe Diem way of life is the way to go,” I explained, and I meant it.
The next night I had a dream in which I acknowledged my cancer diagnosis to others. When I shared that with my best friend, she was not surprised.
“Your subconscious has finally also come to terms with your new reality,” she commented. “That’s real progress, Barb!”
What had evidently not sunk in yet was the fact that I did not have to be what I like to call a stubborn hero. The very next morning, I woke up with bad post-surgery pain which warranted an extra-strength Tylenol. It brought relief until sudden, excruciating constipation pains made me wonder what I had done wrong in a past life. “Is this chemo karma?” I wondered.
“Increase your fibre intake — drink plenty of water — exercise” were “Dr. Google’s” top three suggestions online. I had turned to him for advice because I was not ready to do anything weird (“stand on your head and count your wrinkles”) or be judged for my post-chemo eating habits (“if you eat crap, you will feel like crap”). Following his instructions carefully, I consumed every high-fibre food in my pantry, drank like a fish, and even went on two walks instead of my usual one.
Sadly, my bowels were not moved at all by my activities. When the picture of a huge whale which had mistakenly swallowed a year’s supply of soaked beans appeared in my mind’s eye, I was not amused.
“Have you considered taking Metamucil?” my twin sister asked when I started whining to her during our daily stretching routine.
“I already did, first thing in the morning,” I replied, but otherwise kept my mouth shut. I was not going to admit how frightened I had been when my ears would not stop ringing for what seemed like 15 minutes straight after lunch. “Is this what Beethoven had gone through?” I wondered, feeling closer than ever to this musical genius. He had been stricken with permanent hearing loss and even written a suicide note of sorts at age 32 because of it. Thankfully, he did not give up on life and nor would I!
Nevertheless, I was at my wit’s end by supper time and considered praying to the patron saint of bowel disorders (according to the internet, it is St. Bonaventure). At that point, my trusted guide with the top hat could not contain himself any longer. “Check your diary — the solution is right there,” he said.
Of course! The pharmacist at the clinic had mentioned an over-the-counter medication, Senokot. I quickly looked it up online before heading to the drug store. It was an age-old, all-natural product that contained a stool softener. “Whatever,” I thought, horribly grumpy after having read the instructions.
“Seriously, you are going to make me wait until tomorrow for this stuff to begin working?” I complained to my guide as if he had anything to do with it.
“Patience is a virtue, Barb,” he replied. To my great relief, and that of my bowels, the medication worked — except that I could not shake the strange feeling that Senokot had transformed me overnight into an overweight rabbit which left little gifts behind at the most inopportune times. In any case, I had learned my lesson: get rid of “old @#$%” before it catches up with you.
The highlight of the following week was a drive in the countryside. My friends who had helped me set up my new TV told me that there were beautiful early fall colours to be admired. “We’ll pick you up at 1:30 pm and wear masks,” they said. Thinking ahead, I brought a comfy pillow with me to put over my belly to protect my scar. I was not prepared to sit in the car for over an hour, however, and even less to take a bumpy shortcut gravel road to get to the other side of the Qu’Appelle valley. To distract myself, I kept commenting on the rugged landscape (“I love the yellow and red leaves on the trees”) and my new TV (“I have been overdosing on Chopped because the Food Channel is free in October”). I finally felt better when we walked alongside a creek for 30 minutes (“I can finally breathe,” I remember thinking) before heading back into the city. My favourite part of the outing was the end — enjoying a burger and fries from a drive-through at a picnic table. Life was good!
Gains and losses
The next weekend was Canadian Thanksgiving, which is celebrated on the second Monday in October. Under normal circumstances, I would have thanked the universe for looking after me while playing for a church service, and then marked assignments and possibly taught an aquafit class at the pool. This year, my trusted neighbour treated me to a festive Thanksgiving meal (roasted Brussels sprouts with walnuts, yum!). I also watched my very first Thanksgiving service online and cried when my church community told me in the virtual coffee hour afterwards how much they had missed me — the feeling was mutual.
I shed even more tears while counting the many blessings I had received ever since my surgery. Most importantly, I had gained a new appreciation of how many friends considered me part of their extended family. Every single ride to the hospital and grocery shopping trip, every fun walk in the neighbourhood, and every container with food prepared for me made me feel beyond cherished, as did the online concert tickets and the hand-crocheted prayer shawl I had been gifted as well. Life was good!
I was not at all thankful, however, for the gift of hair loss. “What evil crap is in these chemo drugs to make me shed like a dog preparing for winter?” I asked myself every time I found more hair in the sink and on the couch that weekend.
It started to dawn on me why so many women invested in a quality hair piece early on in their health journey. It helps with mirror shock and prevents awkward questions that some folks will ask jokingly (“Bad hair day or chemo?”). Nevertheless, I was going to have my hairdresser shave it all off. That meant not only wearing turbans and scarves in front of others from now on, but also acknowledging, or, more precisely, no longer hiding or even denying that something sinister was going on in my life.
A meditative walk brought much-needed clarity as to how I was going to deal with channelling my inner “Professor X” (or Captain Picard, if not Telly Savalas; take your pick) on the outside. My strategy was to be like a strong, grounded tree which sheds its leaves in the fall and regrows them in the spring. It was tougher than expected, however, to watch body hair disappear one by one over the course of the next three months. Granted, I did not miss my mustache and goatee (“thank you, menopause”) at all.
But I grieved for every single eyelash and — wait for it — all the hairs inside my nose. It is the weirdest feeling when the latter starts running like a waterfall without warning, especially during or after outdoor walks in the cold (which is the case for six months of the year where I live). As a result, I now carry tissues in every jacket and purse.
I’ll be missing you
Offering my body hair to the chemo gods as a sacrifice for continued good health was, however, not the worst part of the Thanksgiving long weekend.
“Hi, Barb. I am calling from Montreal to let you know that my mom is in palliative care and will pass away sometime today.” It was still early on Thanksgiving Monday.
“She would want you to know that before I post something on Facebook because the two of you were so close,” said my friend’s son.
I had been increasingly worried when she had failed to reply to my texts. I was shocked to hear that she was taken to hospital the day after we had last talked.
“This cannot be happening! She was cancer-free for over a decade,” I remember thinking.
“Do you know how proud your mom has been of you?” I asked her son.
“Not really,” he answered. I proceeded to share many of the wonderful things she had told me about him over the years.
“To hear this while she is still alive means so much to me, Barb,” he replied, crying.
“I am going to keep you and your dad in my prayers,” I told him before I said goodbye, beside myself. I spent the rest of the day reliving favourite memories, including how she helped me overcome a fear of – wait for it – taking my vehicle through the car wash (autoplenophobia). “Just pretend you are watching a snowstorm through the windows,” she advised, sitting in the passenger seat and holding my hand the entire time. Then I contemplated what life without my wonderful friend, a fellow music historian and professional clarinetist, would look like.
She passed away that evening. Having shared the devastating news with my family, friends, and colleagues, I could not stop sobbing while listening to her favourite piece of music, Mozart’s clarinet concerto. “It mimics life,” she had once said to me, “because it is fiendishly difficult to play, yet you must make it sound effortless.”
Would a relative of mine have to call my closest friends a decade from now, if not earlier, and deliver a similar message while listening to my favourite piece by “Mr. Fasch”?
Fortunately, I knew that in times of crises like these, I could always turn to my amazing, long-time clergy friend from Alberta for comfort. She reminded me that there was a time for every season, including death. “Welcome the grief.” she said. “It will come in waves; just ride them out the best you can.”
A week later, my oncology nurse phoned.
“We just got the results of your pre-treatment blood work back, Barb.”
“Are they okay?”
“Your white blood cell count is really low, which means that your next treatment may have to be rescheduled.”
I was stunned.
“Did I do anything wrong?” (Maybe I had overdosed on Nutella?)
“No, it’s a side effect, Barb.”
Then, it hit me. This was what my oncologist had meant by “your body will decide,” rather than the calendar. To my amazement, she contacted me the next day and decided to gamble. “I am confident that your blood count will be fine by Friday,” the oncologist said. I was to come in a half hour earlier, repeat the blood work, and then hopefully stay for the day.
I cannot tell you how much I prayed for my second trip to the “land of healing” not to be delayed. As far as I was concerned, the sooner this journey was going to be over, the better, even if the first round had been manageable overall.
Was my body going to cooperate?