7: “Could it be back?” — Chemo, Round 2
- Page ID
- 210562
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\(\newcommand{\avec}{\mathbf a}\) \(\newcommand{\bvec}{\mathbf b}\) \(\newcommand{\cvec}{\mathbf c}\) \(\newcommand{\dvec}{\mathbf d}\) \(\newcommand{\dtil}{\widetilde{\mathbf d}}\) \(\newcommand{\evec}{\mathbf e}\) \(\newcommand{\fvec}{\mathbf f}\) \(\newcommand{\nvec}{\mathbf n}\) \(\newcommand{\pvec}{\mathbf p}\) \(\newcommand{\qvec}{\mathbf q}\) \(\newcommand{\svec}{\mathbf s}\) \(\newcommand{\tvec}{\mathbf t}\) \(\newcommand{\uvec}{\mathbf u}\) \(\newcommand{\vvec}{\mathbf v}\) \(\newcommand{\wvec}{\mathbf w}\) \(\newcommand{\xvec}{\mathbf x}\) \(\newcommand{\yvec}{\mathbf y}\) \(\newcommand{\zvec}{\mathbf z}\) \(\newcommand{\rvec}{\mathbf r}\) \(\newcommand{\mvec}{\mathbf m}\) \(\newcommand{\zerovec}{\mathbf 0}\) \(\newcommand{\onevec}{\mathbf 1}\) \(\newcommand{\real}{\mathbb R}\) \(\newcommand{\twovec}[2]{\left[\begin{array}{r}#1 \\ #2 \end{array}\right]}\) \(\newcommand{\ctwovec}[2]{\left[\begin{array}{c}#1 \\ #2 \end{array}\right]}\) \(\newcommand{\threevec}[3]{\left[\begin{array}{r}#1 \\ #2 \\ #3 \end{array}\right]}\) \(\newcommand{\cthreevec}[3]{\left[\begin{array}{c}#1 \\ #2 \\ #3 \end{array}\right]}\) \(\newcommand{\fourvec}[4]{\left[\begin{array}{r}#1 \\ #2 \\ #3 \\ #4 \end{array}\right]}\) \(\newcommand{\cfourvec}[4]{\left[\begin{array}{c}#1 \\ #2 \\ #3 \\ #4 \end{array}\right]}\) \(\newcommand{\fivevec}[5]{\left[\begin{array}{r}#1 \\ #2 \\ #3 \\ #4 \\ #5 \\ \end{array}\right]}\) \(\newcommand{\cfivevec}[5]{\left[\begin{array}{c}#1 \\ #2 \\ #3 \\ #4 \\ #5 \\ \end{array}\right]}\) \(\newcommand{\mattwo}[4]{\left[\begin{array}{rr}#1 \amp #2 \\ #3 \amp #4 \\ \end{array}\right]}\) \(\newcommand{\laspan}[1]{\text{Span}\{#1\}}\) \(\newcommand{\bcal}{\cal B}\) \(\newcommand{\ccal}{\cal C}\) \(\newcommand{\scal}{\cal S}\) \(\newcommand{\wcal}{\cal W}\) \(\newcommand{\ecal}{\cal E}\) \(\newcommand{\coords}[2]{\left\{#1\right\}_{#2}}\) \(\newcommand{\gray}[1]{\color{gray}{#1}}\) \(\newcommand{\lgray}[1]{\color{lightgray}{#1}}\) \(\newcommand{\rank}{\operatorname{rank}}\) \(\newcommand{\row}{\text{Row}}\) \(\newcommand{\col}{\text{Col}}\) \(\renewcommand{\row}{\text{Row}}\) \(\newcommand{\nul}{\text{Nul}}\) \(\newcommand{\var}{\text{Var}}\) \(\newcommand{\corr}{\text{corr}}\) \(\newcommand{\len}[1]{\left|#1\right|}\) \(\newcommand{\bbar}{\overline{\bvec}}\) \(\newcommand{\bhat}{\widehat{\bvec}}\) \(\newcommand{\bperp}{\bvec^\perp}\) \(\newcommand{\xhat}{\widehat{\xvec}}\) \(\newcommand{\vhat}{\widehat{\vvec}}\) \(\newcommand{\uhat}{\widehat{\uvec}}\) \(\newcommand{\what}{\widehat{\wvec}}\) \(\newcommand{\Sighat}{\widehat{\Sigma}}\) \(\newcommand{\lt}{<}\) \(\newcommand{\gt}{>}\) \(\newcommand{\amp}{&}\) \(\definecolor{fillinmathshade}{gray}{0.9}\)Judging from the ominous title of this chapter you may think that the answer to the question I posed above is a resounding “no.”
I am happy to report that my white blood cell count had indeed improved to the point that I received chemotherapy for the second time on Friday, October 16, 2020, exactly three weeks after my first cycle.
How did it differ from the first treatment? I had to take three steroid pills the night before to help prevent another allergic reaction; the oncologist’s prediction that I was going to be up all night as a result did not come true. Unlike before, I could not bring a support person with me, courtesy of Covid-19 restrictions.
I was not really going to the cancer clinic by myself, however. I had requested a special “chemo angel” (or guide) to join my own as well as the hosts of other angels that had been sent by my clergy friend specifically; only I could visualize and feel these ethereal beings around me. When the nurses announced about one hour into the treatment that I would be given the first of my two chemotherapy drugs, I distinctly remember feeling my main guide — the one with the top hat — tap me on the shoulder and angel wings surrounding me.
As if by magic, the newly requested guide, a female, showed up at the end of my chemo chair — and promptly made me smile. She looked remarkably like Bellini’s powerful opera character Norma, the high priestess of a Druid temple, which I remembered from a recent production by the Metropolitan Opera in New York. I was waiting for her to sing her famous Casta diva aria for me, but she never did.
Beep, beep, beep
Instead, the monitor that measured my blood pressure at regular intervals (because of my adverse reaction in round 1) went off and refused to cooperate.
“Let’s try your other arm,” said the nurse who checked on me.
“Fine,” I said.
“I cannot get a reading here either,” she replied.
“Let’s get another monitor,” her colleague decided.
“Works for me,” I replied. The new monitor disagreed, however (“beep, beep, beep”).
“I have a better one,” said yet another nurse.
“Maybe the new guide is trying to get our attention?” I wondered silently. Eventually, the frustrated staff checked my blood pressure manually; it was fine.
Since repeating such an “old school” approach every half hour or so was too time consuming (“we are really busy today,” I was told), the nurses proceeded to put the blood pressure cuff around my right calf! I will never ever forget the feeling of having it squeezed so hard that I thought I was going to pass out on the spot. Thankfully, I remembered a special mantra my clergy friend had taught me to use in tough situations. So, I recited “I will not die from that today” for hours, which seemed to amuse my invisible company much more than it did me.
Incidentally, the hospital chair that had been reserved for me for round 2 provided solid entertainment as well. It was an older, economy-class (or second-hand?) model with levers instead of a fancy remote control. Not only did it squeak badly, but every time I pulled the lever, I fell backwards and had to call a nurse when I wanted to get out of it to use the washroom.
“This chemo show today is reality TV of the finest,” I chuckled, expecting a camera crew and producer to appear at any moment to offer me a lucrative multi-episode deal. Sadly, they never did.
Ode to Joy
The three weeks that followed this treatment resembled, at least initially, those of round 1. Thanks to evidently very expensive steroid pills (“don’t lose them,” the nurses had said) and effective anti-nausea medication, my energy was good on the weekend. As a result, I got to spend quality time with Winston, Freya, and their human parents as we slowly walked around the big lake near my house, taking frequent breaks to admire the fall colours.
My energy dipped badly on Monday, however, and stayed low for seven days afterwards. The side effects I had experienced last time — including fatigue, sore mouth pain, insomnia, and ear noises — had all increased in severity, and I also struggled with new symptoms, specifically headaches.
“How are you doing with yours?” I asked my best friend during one of our frequent phone calls. She had been experiencing intense fatigue prior to her diagnosis and, given her medical history, was terrified that the doctors were going to send her straight to palliative care. After starting chemotherapy treatments, she had turned into Wonder Woman (her words, not mine) practically overnight, with seemingly limitless energy and comparatively few side effects. “I am so thrilled for you,” I said to her. She was not going to die!
During our cherished weekly visits, we would often watch online concerts — we both missed going to live events so much — on my new smart TV. To our delight, the couple who had helped me with setting up my new TV arranged for complimentary access to online concerts which had been recorded exclusively for a local concert series. My best friend and I were also excited that the performers had chosen music by Beethoven to commemorate the 250th anniversary of his birth in 2020, an occasion which had been completely overshadowed by the pandemic.
We often pondered a multitude of philosophical issues that focused primarily on our shared past (“Remember when…?”) and the present (“Is this really happening?”). After all, thanks to a global pandemic, it was impossible to predict what our respective lives would look like two weeks or even two months from now. We were, therefore, exceedingly grateful that we could support each other in this time of crisis in a variety of meaningful ways.
There was, incidentally, one daily and non-food related activity that involved one other person and always made me feel better. If your imagination just led you astray and conjured up soft pillows, silky bedsheets, and your favourite movie star in a sexy outfit, you are on the wrong track.
Showing up is half the battle
The correct answer is, of course, exercise, specifically indoors during a pandemic.
I cannot stress enough how much it helped me cope with, and manage effectively, the vicious cycle of fatigue that plagued me throughout my journey back to health. Unless I could not physically get off the couch or out of bed, I would meet with my twin sister daily online for gentle stretch routines. She had carefully tailored them to allow me to heal properly from my surgery and had taken side effects into consideration as well. Together, we worked our way up from 15 minutes in bed to an hour on an exercise mat over the course of several months.
I admit that there were days on which showing up at the appointed hour required every ounce of my willpower.
“I won’t last long today,” I remember saying to my favourite personal trainer more than once.
“No worries,” my twin sister replied. “We will just start low and go slow, and you will let me know when it is time to quit.”
“Perfect,” I said. I had learned quickly that I would always feel better physically and mentally when I moved my body, even for a short time.
In hindsight, I am not sure to whom I would have turned to for exercise if there had been no pandemic. All I could find online was a local yoga studio that offered free classes for cancer patients and those in recovery; the local cancer clinic advertised only classes for breast cancer patients. I wondered why I could find no certified cancer exercise specialists in the city where I live, given its population of over 200,000.
And even though cancer is not contagious, I know I would not have been comfortable returning to my regular fitness classes at the local YMCA or teaching aquafit at the pool.
Most importantly, the risk of catching an infection along the way would have been too great, in my opinion, even without Covid-19 keeping the entire world in check. Fortunately, my twin sister accommodated every single exercise and rescheduling wish of mine, as did my walking buddies (and their dogs), who never complained when I cancelled, often at short notice.
On Saturday, October 31, 2020, Halloween — or Reformation Day, take your pick — nasty winds prevented my regular weekend stroll around the big lake near my house. That was fine with me, as I had woken to awful belly pain and spots of bright red blood in my panty liner (“not again”). The symptoms had subsided by the afternoon, which meant that I could walk over to see the couple who had helped me with setting up my new TV and enjoy an evening of live music with them, albeit online. Wearing masks and sitting two metres apart, we first watched a spooky Halloween organ concert that my twin sister, an organist and choral director by training, had helped organize, followed by a wonderful symphony orchestra concert. Life was good!
Actions and reactions
That cheerful feeling changed on Monday when I called the cancer clinic to tell them about my symptoms. “Come in tomorrow at 10 am,” I was told and successfully distracted myself for the remainder of the day by watching TV (My Lottery Dream Home) and chatting with friends (“Mom and dad send their love”).
When I walked into the clinic’s waiting room, an eerie voice in my head suddenly piped up. “What if the cancer is back — what if the cancer is back — what if the cancer is back…?”
My stern “Go away!” instructions did not prevent tears streaming down my face when a kind nurse led me to a treatment room and took my vitals.
“Are you okay?” she asked, clearly concerned.
“Not at all,” I answered truthfully. She gently patted me on the shoulder.
“Don’t worry; the doctor and her resident will be here soon.” Then she left.
They got delayed, and I ended up waiting for 45 minutes by myself on an uncomfortable stretcher. My overactive imagination unfortunately got the better of me and conjured up 1,000 different scenarios, ranging from “it’s going to be fine” (my main guide’s preferred one) to “I am going to be dead before Christmas”, courtesy of the terrified little girl inside me.
When my medical team finally entered the room, I was beside myself. The question “What if the cancer is back?” was still echoing inside my head. “Just try and relax,” the oncologist said patiently.
After a thorough exam, she concluded that there was no indication that the cancer had returned, but that a biopsy would be done to be sure. There was also no reason I could not have my third treatment on Friday. “Take it easy until then, Barb,” the oncologist said. I promised to try my very best.
When I arrived at home, I went straight to my fridge and ate everything in sight, including leftover chili, peanut butter straight from the jar, and half a bag of chips I found in my freezer.
In hindsight, I should have called someone to talk about how I, an emotional eater since childhood, felt about what had just happened. If I had, I would have hopefully admitted to being angry at the oncologist for not warning me in late September about the intense food cravings and the increased appetite that had tormented me since the first treatment. Who knew that they were typical side effects of endometrial cancer and true for ovarian and breast cancer as well?
My post-weight loss persona, or “thin me,” also blamed the doctor’s “don’t diet during treatments” instructions for my current — and future — weight gain. Why could I no longer restrain myself when I shopped for groceries and/or others brought me food like I did prior to the surgery? The line My body needs the extra calories to help me keep up my strength had been a most welcome excuse whenever it happened.
Curiously, I seemed to be the only one worried that my clothes would soon no longer fit. “If that is your biggest problem these days, you are laughing,” my clergy friend in Alberta said perceptively. She reminded me once again to be more patient with myself. “I’ll try,” I said.
I worried in vain about having to step on a scale when I saw my GP a few days later for my annual flu shot. “Get it the day before your next treatment,” the oncologist had said, explaining that my immune system would be strong at the time. To my surprise, my GP did not agree and promptly got on the phone. “She calls the shots, so I guess I will be giving you one today, Barb,” he announced a few minutes later. I laughed out loud. Then, he asked me to roll up my sleeve. “I owe him so much,” I thought, truly impressed with this detail-oriented and caring physician.
“I’ll make sure to keep you posted on everything that is going on as far as my journey back to health is concerned,” I promised him before I left the treatment room.
“Call me anytime,” he replied. He was clearly smiling behind his surgical mask and plastic face shield. What a gem!
Heads up: I will describe some of my least favourite memories in the next few chapters. A line my favourite roommate from graduate school had often used — I laughed; I cried; it became a part of me — perfectly captures what I went through. In other words, I lived to tell the tale.