I remember only two things about the chemotherapy treatment on Friday, December 4, 2020, St. Barbara Day — an obnoxious fellow patient and an early Christmas gift.
An elderly woman had dragged herself into the cancer clinic that morning.
“I feel awful,” she had said to the staff, who asked her to take the chair next to mine.
“The water pills my doctor gave me last time made me drop 12 pounds in the past 14 days,” she shouted. The nurses decided to check with her oncologist about whether to go ahead with the treatment. “Good idea,” I thought. Why had she had not called the clinic at the end of the first week, if not sooner? I certainly would have.
Long story, short: after 30 agonizing minutes, they sent her home. Visibly relieved, yet in a foul mood, she called her husband to ask him to come get her — and then went into a loud and lengthy rant about online banking security issues, and how she would tear a strip off her financial advisor later today.
“Seriously?” I thought. Despite realizing that she was clearly not feeling well, I still found it difficult to show empathy. Was she perhaps this nasty all the time, not just as a cancer patient? In any case, the other patients who were not happy with her rude behaviour either. We breathed a collective sigh of relief when she departed. That made me wonder whether my doctor and nurses found me difficult to deal with; if so, they had never let on.
“It takes a special kind of person to deal with oncology patients day in, day out,” I concluded and shared that observation with the nurse who was changing my medication. “I really admire what you do; thank you so much!” I said before I closed my eyes again.
Several hours later, another nurse touched my arm.
“You are almost done, Barb,” she said when I opened my eyes.
“Will my next appointment be moved because of the Christmas holidays?”
“It says here that you are to return on December 29.”
“I’ll be there.” I was truly thankful that I would not have to struggle (much) with side effects on the Christmas weekend. My immune system would also have several more days to recover from this treatment.
“Only two more rounds to go!” my family and close friends had been quick to point out when I checked in with them at home. The next two days were once again regulated by steroids and nausea medication. As a result, I had enough energy to join my two walking-buddies and their four-legged companions for our cherished weekend afternoon walks, despite cold temperatures and snow on the ground.
On Sunday night, however, things took a turn for the worse.
I experienced the most challenging hot flashes since I had finished my period in late November 2018. Literally dripping all over, I changed my pyjamas and the bedding. I also did my best to cope with crippling fatigue and terrible joint pain for the rest of the day. Was I going to feel well enough to see my oncologist the next morning for the promised check-up?
Looking back, I should have rescheduled that appointment, even though there had been more discharge and belly pains since Friday. I felt horrible but still dragged myself in to see my oncologist. The diagnosis? I was not healing properly on the inside, most likely because the recovery time between surgery and chemotherapy had not been long enough. I had wondered about that myself.
Then, the oncologist warned me. “You could be stuck with these post-surgery symptoms until you are finished with chemotherapy.” I was to take daily sitz baths with unscented Epsom salt to help me heal.
For about a week or so afterwards, I spent quality time in my bathtub filled with lukewarm water. This made me think of all the wonderful times I had spent at the local YMCA pool and fitness centre over the years. The facility had been closed for good in late November 2020, a terrible loss as far as I was concerned. My fellow aquafit instructors and other fitness enthusiasts were an important part of my life outside of work. I missed them as much as I missed putting together and demonstrating both on-deck and in-the-water routines that typically involved aqua weights, plastic balls, and pool noodles. When some participants asked whether I stayed up all night to dream up suitable exercises, I replied, “You bet – it beats counting sheep and marking papers!”
On the following Sunday, much to my surprise and frustration, I had another lengthy weeping episode. “I have no reason to cry,” I told myself (or, more precisely, my inner child), only to open another box with tissues to wipe off the tears. I could not explain why I was so overcome with emotion that morning. It had been a good week, thanks in part to feeling energetic enough to record some organ music for an online carolling event soon to be hosted by my church.
“I have missed playing so much,” I said out loud when putting on my organ shoes — yes, special footwear is required, in case you did not know. I sat down on the organ bench, turned on the power switch, and stepped on the organ pedals. “Oh no,” I moaned. The upper half of my left foot was completely numb. I promptly started cursing in German to cover up how terrified I felt.
Then, I remembered that the oncologist had asked me a couple of check-ups ago whether I had felt any tingling and/or numbness in my hands or feet yet. “No — should I?” was my surprised answer. These symptoms apparently affect over half the patients who are given Paclitaxel. In my case, they had set on late and would linger for months. Thankfully, what musicians refer to as “body memory” came to my rescue, and as a result my “organ feet and hands” knew exactly what to do on the king of the instruments that afternoon.
I found it difficult to focus and concentrate, however.
As a post-menopausal woman over 50, the concept of “brain fog” was nothing new to me (“why can I not remember my access code to the faculty printer all of a sudden?”). To keep my mental faculties sharp throughout treatments, I played Bananagrams, a Scrabble-like game, as often as possible and continued to listen to a lot of Classical music, especially works written by my favourite early 18th-century composers: Fasch, Bach, Handel, Telemann, and Vivaldi. In case you missed it — listening to Classical music has been proven to have beneficial side effects on all ages, including improved memory, reduced stress, and better sleep.
But what exactly was chemo brain, a phenomenon I had read about online? At first, I noticed only that answering texts and e-mails took much longer. Then, my excellent proofreading skills seemed to have disappeared seemingly overnight. Eventually, it became increasingly difficult for me to get through more than a paragraph at a time, regardless of literary genre and difficulty level. “So much for reading any historical romances any time soon,” I concluded regretfully. On the inside, I was starting to freak out.
Since daily news now comes in bit-sized pieces online, and my best friend always brought magazines when she came to visit, I ended up reading a lot, but much more slowly and taking many breaks. Curiously, handwriting cards and envelopes to go with Christmas presents also seemed to take me forever now.
“What is happening to me?” I wondered when words in German and English began to elude me. As a bilingual person, I am used to the occasional translation issue, but this was decidedly different. Carrying on a conversation in either language occasionally felt like trying to stir a newly opened jar of crunchy peanut butter with oil at the top. The bottom line: I could no longer rely on my brain like I did before — and that scared me.
The other reason for crying so hard on that Sunday morning was likely a philosophical one. I was remembering — or, more precisely, grieving — a future I would never have; the Danish philosopher Søren Kierkegaard had already figured this out in the 19th century. Most importantly, for the first time in over five decades, I would have to spend the Christmas holidays by myself, courtesy of Covid-19. My brain and my body agreed fully with the pandemic travel restrictions that had been put in place by the government to keep me and others safe. I also very much appreciated technology that allowed me to stay in touch.
The little girl inside me, however, was devastated that she could not leave town to be with loved ones in person.
As if by magic, Christmas cards and presents began showing up in my mailbox and at my doorstep to help me deal with this new reality. Twenty-four different tea samples, a giant poinsettia, and more chocolates, jams, and soaps than a single person would ever need in a year soon graced my kitchen table. Moreover, my niece’s mother-in-law had sent a ton of Lebkuchen cookies from Germany after learning from my sister how much I liked them. “Feel free to share them with others,” she told me when I called to thank her (“I will”). Another parcel arrived all the way from Newfoundland, courtesy of my MD friend and her husband. It contained locally sourced jams, chocolates, candles, and lip balm as well, plus the softest, most gorgeous wool scarf, perfect for wintry days. Life was good!
I was overwhelmed by everyone’s generosity and unsure how to reciprocate. My friends’ standard reply — “You do not owe us anything, Barb, on the contrary” — signalled that I seemed to have made a difference in people’s lives over the years. That, in turn, made me cry many more tears of gratitude and happily acknowledge that life was good indeed.
My nurse will tell you what to expect
“Will you come with me on December 17 to the radiation oncologist’s assessment appointment?” I had asked my trusted neighbour when a nurse called and told me that I could bring a support person with me. We waited patiently for 45 minutes that morning until a frazzled physician appeared. He skipped an apology for the delay in favour of detailing my treatment plan.
“I want you to have a CT scan prior to your last round of chemotherapy,” he said. “I want to know exactly what is going on inside your body. And I also want you to have a PET scan.” The Positron Emission Tomography would have to be done in a different hospital, which was 260 km north of where I lived.
“What about the radiation therapy treatments?” I asked.
“There will be 28 in total,” the radiologist answered. They would take place at the local cancer clinic (“oh, good — no travel required”) and would begin four weeks after I had finished chemotherapy.
“My nurse will now tell you more about what to expect,” he said, and left.
The conversation that followed was bizarre and hilarious at the same time. First, I would need to undergo a so-called “CT scan simulation” procedure; no radiation patient can begin treatments without one. It would help determine, amongst other things, where three radiation beam tattoos on my belly would go.
“They are tiny and won’t hurt,” the nurse said.
“The 25 external treatments require a full bladder, will take about 10 to 15 minutes each, and be scheduled on consecutive weekdays,” she explained further.
“What about the three internal treatments?” I asked.
“Brachytherapy sessions require a vaginal sizing appointment first. A plastic radiation device will be inserted each time,” she answered. “It comes in various sizes — did you want me to show you some samples?”
“Um, sure,” I replied. When she left the room, my neighbour and I promptly started laughing, since we had no idea what to expect.
The nurse returned with several pieces of clear plastic that ranged in size and shape from a certain male appendage to an extra-large tampon with an applicator.
“Um, I’ll take that one,” I said. (I leave it up to you to decide at which one I had pointed.)
“One of the side effects of pelvic radiation therapy is that the vaginal walls can close, which is very serious,” the nurse went on to explain. Patients who had finished radiation treatments therefore needed to stretch them on a regular basis, also to facilitate pelvic exams. Specifically, I was to start using this device one week after finishing treatments three to five times a week, for three to five minutes.
“And you want me to do this for how many months?” I asked.
“Twelve,” she answered.
“You are kidding me, right?” I blurted out, stunned but with a big smile on my face.
The nurse was dead-serious — unlike me, who on our drive home went straight into a stand-up comedy routine. “Who knew that at my advanced age, and as a confirmed single, I would be asked to put a decidedly unattractive sex toy of sorts to good use every other day for an entire year?”
“Too bad this thing does not come with an on-switch or will be delivered by my favourite movie boyfriend,” I added.
But it was my twin sister who brought down the house when I told her about what I had promptly dubbed “Barb’s pelvic homework.”
“Is this how nuns die?” she asked with a worried tone in her voice.
“Only those nuns who received radiation therapy and failed to follow instructions,” I responded. We both laughed out loud, realizing that humour will get you through pretty much everything.
Two days later, I did not want to laugh anymore.
I had felt very tired after the oncologist’s visit and had gone to bed early that evening, waking up in the middle of the night to severe hot flashes and chills. The following morning, I also suffered from a bad headache that warranted a pain killer. As always, I checked my temperature first. It had risen to 37.6 degrees Celsius; typical for me is between 36.1 and 36.5 degrees Celsius. “Odd,” I thought. “I better take my temperature again in a couple of hours when I am back from my massage appointment,” I decided.
To my relief, it had gone down to 37.1, so I made myself a tuna sandwich for lunch, watched TV (Caribbean Life), and even had a little nap. I woke up at around 5 pm to severe chills, and my forehead was suddenly on fire. “Oh no,” I thought, grabbing the thermometer — it read 38.1 at 5:35 pm. “You must contact us immediately if your temperature rises above 38 degrees Celsius,” it had said in the paperwork from the cancer clinic. “Do not try to figure out why you are running a fever — just call us!”
That is exactly what I did at 5:38 pm; there was a special number given for weekend emergencies.
“Come in as soon as possible,” said the resident on call. I remembered her well from the last check-up.
“Should I bring an overnight bag?”
Her reply did not come as a surprise. My Greek colleague had told me early on in my treatment journey about her two hospital stays while undergoing chemotherapy. “Be ready at a moment’s notice and expect to be there for about three days,” she had advised. My trusted neighbour immediately offered to drive me to the hospital when I called her with my news.
After showing a small card that read “I am currently receiving chemotherapy” to the triage nurse at 6:30 pm (I had been told to always carry the card with me), I was immediately led to the acute care treatment area.
“Please put a gown on and lie down on the stretcher,” the nurse said, closing the curtains around me. I followed his instructions and then grabbed my phone to get in touch with my twin sister about being in the hospital. Replying via text with a simple “OK”, she was clearly taken aback but trying to stay calm, as were our oldest sister and other close friends whom I contacted over the next half hour or so.
I found out only much later that my cheerful “Hi! I am in the hospital, but don’t worry” texts scared them all profoundly.
I, on the other hand, was calm — and oddly proud because I had jumped into action rather than questioning or, worse, ignoring explicit directions. I also had not argued with my inner guidance system, specifically my main guide with the top hat. He had already predicted during the drive to the hospital that I would have to stay there to heal properly.
“We will let the doctors decide,” I thought, while having blood drawn from both arms. A quick Covid-19 nose swab, a urine sample, and a chest x-ray followed. Then, a first-year neurologist checked me thoroughly from top to bottom. Since he apparently played the cello and his favourite composer was J. S. Bach, I figured I was in good hands.
“You are fine,” he determined 20 minutes later.
“I can go home then?” I asked.
“If all your tests come back negative, yes, you will be able to,” he replied.
He was wrong. About an hour later a nurse informed me that I was being admitted.
“So, they found something?”
“They are running another test that takes 72 hours, so we will put you in an isolation room, let the antibiotics do their job, and wait for the results.”
By the time the oncology resident on call came to see me the next morning, my temperature was normal, but I felt weak despite receiving antibiotics every six hours.
“The nurse woke me up at 4 am to change the IV bag, and I could not fall sleep because it was so loud outside,” I complained while the resident performed yet another pelvic exam.
“I know,” she responded. “I’ll do everything in my power to get you moved to a different part of the emergency department. Unfortunately, we do not have a bed for you in a ward because of Covid-19 patients.”
As a result, I spent the next two days and nights by myself in the ambulatory care unit. Was this perhaps the universe’s twisted way of sending me on an all-expenses-paid trip to the “land of healing”? Regardless of the answer, I was going to make the best of it.
On my way back from the shared washroom I asked one of the nurses what Code Burgundy stood for.
“It was first used when hospitals put sick patients in the morgue because they had run out of space elsewhere,” she said.
She laughed. “It just means that it is our job to look after the overflow patients.”
“Are there lots?”
“It is not too bad right now — you should have been here a couple of months ago when the second Covid-19 wave hit.” In other words, I was lucky to have been given my own room instead of twiddling my thumbs on a stretcher in the hallway.
“I need to get out of here as fast as humanly possible,” I decided right there and then.
To that end, I would make sure to annoy the medical staff with a “I feel fine and want to go home now” mantra, including the resident and my oncologist. They dropped by on Sunday afternoon and made me chuckle when they first admitted to each other that neither of them had been to this part of the hospital before and then realized that they had both gotten lost on their way to find my room.
“So, what’s the verdict?” I wanted to know.
“Well, the tests we ran yesterday all came back negative, Barb,” the resident said.
“That’s great,” I thought, winking invisibly at my main guide.
“In fact, that neurologist wanted me to send you home last night,” the resident reported.
“So, isn’t keeping me here overkill?” I wondered.
“No.” She smiled.
“I taught him a lesson,” the resident stated, much to the oncologist’s delight and my own. “When chemotherapy patients run a fever, we admit them, because if we don’t, they could potentially die from an infection,” she explained. The oncologist nodded in agreement.
“I will stay here as long as you want me to, ladies,” I replied.
In practical terms, that meant making do with a stretcher instead of a proper bed, coping with wildly fluctuating room temperatures, and tasting my way through decidedly non-gourmet hospital food once again.
“Pureed fruit salad for dessert? You’ve got to be kidding me,” I said to my twin sister, having sent her a picture of my less-than-appetizing supper. “I guess until I get out of here, I will have to live on antibiotics and black tea,” I joked.
My plan was flawed, however, as there was no kettle to be found anywhere in the ambulatory care unit. The nurses had to ask their colleagues in the nearby emergency department to heat water for me in their microwave.
“I am very sorry to be such a bother,” I apologized to the nurses on Monday morning when the hospital kitchen had sent coffee by mistake (I am a “tea girl”). Having been awake since 4 am when my bag of IV-antibiotics had been changed, I was in desperate need of caffeine — and still chuckling about what had happened the evening before.
I was already half-asleep with my eyes closed when I heard the night nurse fiddling with the monitor.
“Shut the @#$% up,” she said.
Stunned, I opened my eyes and looked straight at her.
“I didn’t say anything,” I replied. She immediately apologized, and we both laughed heartily.
A lot of rest to combat belly pain and long-lasting chemotherapy side effects as well as chatting with friends from as far away as New Zealand and Australia made the rest of the day go by quickly and another night on a stretcher bearable.
On Tuesday morning, December 22, 2020, I was told I could go home (“finally”), a prescription for an oral antibiotic in hand. “They ran out at the hospital,” I quipped, much to the delight of my three sisters, my MD friend, and my clergy friend from Alberta. They had anxiously been awaiting my return.
So had my GP, it turned out. He called before lunch. I promptly began to pester him with questions.
“Do you have a sense as to why did the tests all came back negative?”
“Likely because the fever was not caused by an infection. You probably caught a virus, Barb, but not Covid-19.”
“A virus? How? I have been so careful.”
“You could have picked it up anywhere and from anyone. I want you to go into absolute isolation until further notice.”
I was not impressed.
“You do not want to go back to the hospital or your chemotherapy treatments to be delayed again, do you?” he asked.
“No way,” I thought.
Much of the Christmas weekend was therefore spent on the couch. My favourite memories include watching my church’s beautiful Zoom worship service on Christmas Eve and taking my car for a spin on Christmas morning. As had become my custom, I prayed while driving. “Thank you, universe,” I said. I was grateful not only for the beautiful weather and my miraculous recovery, but also for the yummy Christmas dinners I would be served today and tomorrow, courtesy of my trusted neighbour and the couple who had helped me with setting up my new TV. On Boxing Day, I video chatted with my elderly aunt and uncle, their children, and grandchildren in Germany for the first time ever. They were thrilled to see me and complimented me on my Santa hat. Life was good!
I had no idea that the worst chemotherapy round ever was just around the corner.