It did not. Instead of feeling relieved and cheerful to have finished a chemotherapy marathon of sorts, physical and mental exhaustion and a foul mood greeted me the next morning, much to my dismay.
So long, caffeine
My spirits were lifted, at least initially, when the phone rang. It was the same radiology nurse who had shown me the vaginal stretching devices in mid-December. She carefully walked me through what to expect before, during, and after the radiation treatments which were to start in mid-February. “Finally, I’ve got some answers,” I said to her.
“There is one more thing, Barb,” she replied. Effective immediately, I was to cease consuming any caffeinated beverages, fizzy drinks, and fruit juices and substantially increase my water intake. I was stunned; nowhere in the paperwork I had been given had it said anything about turning myself into a cold-blooded animal with fins and scales that breathes with gills.
“Not even herbal tea?”
“You can have one cup today, Barb, but until further notice it is water only.”
“But I just finished my six rounds of chemo yesterday.”
As a devoted black tea aficionado, I would now have to add caffeine withdrawal symptoms to my already long list of side effects.
“We need the chemo drugs to be flushed out of your system before radiation treatments begin, Barb,” the nurse explained. “Caffeine is hard on the bladder, which is one of the organs that will be affected by the radiation.”
Giving up caffeine for a few weeks was a temporary sacrifice for which my body would likely thank me in the long run. I was also hopeful that my discipline as a musician and academic would make a difference. After all, I had spent many hours practising my instrument and countless more to excel as a university professor.
A statement made by Angela Merkel, Germany’s long-time chancellor, came to mind as well. Following a visit to a refugee camp in Dresden in 2015, she said, “Wir schaffen das,” which in English means something along the lines of “We will get through this,” or “We will get this done.” In other words, I was going to adopt a “can-do” attitude, and if I did have to cheat once or twice, the world would surely not come to a screeching halt.
Questions and Answers
Ten minutes later, the phone rang again.
“Your CT simulation appointment will take place on February 5 at 9 am and will last 90 minutes,” another radiation nurse informed me. “We are located directly below the cancer clinic, in the basement; please arrive 10 minutes early,” she requested.
“Could I please see a dietician that morning as well — I have a few questions,” I said.
“You bet,” she answered.
Her cheerful reply made me wonder whether I was not the first one to make such a request. “Dr. Barb” had found the printed information provided by the radiologist to be much less detailed compared to what health authorities in other provinces posted online.
“We will also be able to tell you more about your radiation therapy appointment schedule on that day as well,” the nurse continued. “Please keep all 28 treatment days wide open as starting times could change at short notice.”
“Not a problem,” I replied.
As per my Greek colleague’s suggestion (“This worked for me,” she had said), I had planned to ask the nurse for a favour. Could she kindly schedule all my appointments at the same time or time of day (morning or afternoon)? The nurse’s authoritative tone of voice — which sounded remarkably like “Dr. Barb,” come to think of it — signalled, however, that she would not entertain such a request.
I dreaded having to share this piece of news with my trusted neighbour. She had kindly volunteered to take me to all appointments in February and March. Would she withdraw her offer? When she assured me that she would not (“You won’t know how you will feel every day,” she said), I was grateful. Hopefully, the weather would cooperate as well.
Fifteen minutes later, the phone rang again. It was the radiologist who called about the CT scan and patiently answered all my questions.
“What about the bladder cyst?”
“I expect it to go away by itself, but the PET scan will tell us more.”
“I have been experiencing belly pains; could that be because of the cyst?”
“That’s hard to say. Call immediately if you run a fever because that could be a sign of infection.”
Then, I put the kettle on for some — herbal — tea to enjoy for the last time in a while.
My GP contacted me in the afternoon and asked me about the treatment. Trying to sound upbeat, I told him about the ringing the bell ritual. He was pleased but it quickly became clear that he had called for several different reasons.
“Given that the pandemic numbers keep going up, you must continue to isolate, Barb — and try to get lots of rest over the next few weeks,” he said.
“You bet,” I replied.
“I also read the oncologist’s report from Tuesday — how are you feeling today, Barb?” my GP wondered.
“I had a bad day. But I am doing much better, now that the radiologist and the nurses have told me more about the upcoming radiation treatments,” I stated.
“That’s wonderful,” he replied.
“I also plan to attend a gynecological cancer support meeting on Monday,” I informed him. According to my main guide, I would not regret it.
“That’s an excellent idea — is there anything else I can help you with today?” he wondered.
“Yes — do you have a sense yet when will I be vaccinated?” I asked.
My MD friend had encouraged me to get answers, because each Canadian province managed its vaccination rollout schedule on its own. My GP’s reply was a huge relief. I would likely be fast tracked because I was receiving cancer treatments. It was, however, anyone’s guess as to when I would receive my first shot.
“Before I let you go, I want you to know that you have been my hero ever since I came to see you last year,” I said, and thanked him profusely for everything he had done for me. “You are awesome!”
I could hear him chuckle.
“Take good care of yourself, Barb, and call me if you need anything.”
To everyone’s delight, especially my own, I experienced no vertigo whatsoever after the last chemotherapy treatment. I was, however, still fatigued, my feet and hands were tingling, and my right thumb was often numb which made it tough to write and type. Ringing noises in both ears also bugged me at times.
Those side effects were, however, not the problem.
If you have never had hormonally-induced hot flashes, I would like you to pretend right now that you have a powerful oven in your upper body. It only knows two settings — broil and off — and turns itself randomly at the most inopportune times. Episodes can range from 30 seconds to what feels like an eternity. They will also haunt you for years, if not until the end of your days (or so I am told).
The good news is that wearing layers helps, including at night. Nevertheless, I have always hated having my glasses fog up, turning beet red, and engaging in what I have dubbed “The Barb striptease.” It typically involves taking off as many layers of clothing as fast as possible without embarrassing myself in front of others who might be watching while standing, for instance, in university lecture halls or church sanctuaries.
For a couple of nights after the last chemotherapy treatments, night sweats involving wildly fluctuating temperature changes (“where did my duvet go?”) kept me up but did not make me lose my cool. After all, I was a seasoned hot flash professional with many years of experience who had successfully dealt with, for instance, melting makeup and slippery piano keyboards. But I had never ever encountered a soaking-wet pillow.
“This was a disgusting first in the long and horrid history of hot flashes at my house,” I said to my twin sister the next morning. I was also annoyed that the second pillowcase I had put on the night before had made no difference. “But where else is body sweat supposed to go if you have no hair on your head?” we both wondered.
“I’ve got a plan,” I said to her. I would put on the cute little pink, very stylish sleeping cap my Greek colleague had loaned me and wrap a big towel around my pillow at bedtime.
Sadly, I had forgotten all about it when I went to sleep.
“My entire body is on fire,” I thought when I woke up at 1:45 am. Seconds later, I jumped out of bed and ripped off my night clothes in record time, only to feel horrified. My pyjamas, panties, and one-of-a-kind German wool socks were completely drenched, and my sleeping bra was so heavy with sweat that I could wring it out over the sink. There was also no question that the bedding needed to be changed — again. After toweling myself off from top to bottom in the bathroom, I went to the linen closet to grab new pillowcases and sheets when another hot flash hit.
“Oh, my Lord, this one feels like a volcano is erupting inside me!” I blurted out. I concluded that the devil himself had sent it straight from (chemo?) hell. When I could feel more hot flashes coming on that were increasing in both strength and length, I knew I needed to do something drastic to cool myself off.
However, instead of drinking cold water and/or jumping into the shower, I ran from my bedroom to my living room, opened the balcony door, and stepped outside into the snow in my bare feet.
“Ahhh,” I groaned. I was thrilled to bits about the -35 degrees Celsius winds that suddenly caressed my body. “This is heaven,” I said and let out a huge sigh of relief. It was a super-cold, but beautiful starry night, and I remember admiring the moon when I suddenly realized that I had been standing out there in my birthday suit for several minutes, if not longer.
“Well, I hope the devil and whoever else was watching enjoyed the sight,” I declared and came back inside, feeling much more like myself. Incidentally, the risk of severe frostbite never entered my mind. All I cared about was for my body temperature to return to normal, so I could get a few more hours of sleep. To that end, I changed my bedding, put on a new set of night clothes, fell into bed, and dreamed of — wait for it — polar bears on fire!
The next morning, I realized two things. Those annoying night sweats had culminated in my very own “balcony scene” — but where was Romeo when you really needed him? “I am right here,” my top-hatted guide promptly replied with a smile. More importantly, the other side effects had been much less challenging the week after my last treatment. For obvious reasons, I had been prepared for — and imagined in gory detail — the worst post-treatment period ever. What had been different this time around, besides having the medication changed back to what it had been before? Drinking water only, meditating and exercising daily, and getting a lot of rest.
“I wish I had known that at the beginning of this journey,” I said to my relatives and close friends, who were grateful that I was doing well.
“Are you still planning to show up for the gynecological cancer support group Zoom meeting tonight?” my twin sister asked during our stretching routine the next day.
“Yes,” I answered. “But I have no clue what to expect.”
The social worker had said that the meeting was geared at gynecological cancer survivors. It turned out, however, that the other 22 ladies in attendance had either received an ovarian cancer diagnosis themselves in the past five years or had relatives who did.
“These are not my people,” I thought, ready to make up a phony excuse and sign off.
“Stay put,” my main guide said with a stern voice.
I sobered right up when most of the attendees shared, in a matter-of-fact tone, that they had faced at least one recurrence. “Where is my tissue box?” I wondered. I realized that my own journey, while equally valid, suddenly seemed insignificant in comparison.
As the only participant wearing a turban, I laughed out loud when one the attendees began complaining about not being able to visit her hairdresser anytime soon because of Covid-19 restrictions. In fact, seeing every single participant with hair on her head — and lots of it — cheered me up no end. I also appreciated the suggestions made regarding follow-up appointments.
“You don’t want to fall off the doctor’s radar,” several ladies said.
“I’ll definitely keep that in mind,” I replied.
I was also wondering whether that was the real reason I needed to stay until the end of the meeting. In the past, I had successfully steered clear of medical doctors and hospitals. Now, I could not imagine my life without the ongoing advice of trusted health professionals. “I am going to be in touch with my medical team and/or GP for the rest of my life,” I promised my relatives and friends and, most importantly, my little girl and main guide — that is, myself.
A week later I told one of my favourite new colleagues, a former student, about the support group meeting. She replied that her mother had been diagnosed with the exact same type of cancer many years ago.
“Do you think your mom would be willing to chat with me?” I asked.
“You bet — here is her number,” she replied.
Our talk took about an hour and was most enlightening.
“Like you, I gained weight during chemo, but I lost it all eventually.”
“What do you remember about radiation treatments?”
“Not much because it was a long time ago; but I did drive myself there, an hour each way, on most days.”
“Did you struggle with side effects?”
“There were a few days of discomfort, but for the most part, I felt good.”
That was the answer I had secretly been hoping for. Then, my colleague’s mom shared a most unexpected piece of information: she and her own mother had been diagnosed with cancer at the same time. As a result, they had gone through chemotherapy and radiation together. Thankfully, both did well after their treatments.
“I am so happy for both of you,” I said.
“You will be just fine, Barb,” she emphasized.
I very much wanted to believe her.