3. “A sinister mass” — Being Diagnosed

One more thing you need to know about me is that prior to this health journey, I always preferred folks with PhDs to medical doctors. They do not tend to ask annoying questions (“Could you be pregnant?”) or conclude in record time that I — despite being in excellent health — would die young like my parents.

I knew I had found the right physician in spring 2017 when in response to my admittedly cheeky statement he asked, grinning from ear to ear, “What happens when health professionals have dual degrees…?” I had limped into my university’s walk-in clinic to have someone assess an old injury that refused to heal.

“It clearly states in the radiologist’s report from fall 2016 that you probably broke a small bone in your right foot,” he noted. “You had fallen down some steep church stairs?”

“Yes, but your colleague just told me to go home to rest and ice it,” I replied, stunned.

This physician did not waste any time to get to the bottom of my limp. The broken bone had healed (“good”), but I had developed a heel spur in the other foot (“not good”). To get me back on my feet again, I was to see a physiotherapist immediately. “Wow! This doctor really knows his stuff,” I concluded at the end of our visit.

When I came to see my GP on Thursday, July 23, 2020, he was impressed that I had successfully dropped so much weight. I was impressed that my blood pressure was perfect that day, as I have long suffered from “white coat syndrome.” My blood pressure tends to shoot up when a nurse or a medical doctor check it.

“What are you thinking?” I asked my GP had after he had examined my belly.

“Large fibroids; you will definitely need surgery, and soon,” he replied. His answer was unexpected, but not anything I could not handle; a dear friend with the same diagnosis had recovered quickly and was back at work in no time. A transvaginal ultrasound and a pelvic exam were scheduled for the following Tuesday.

“Call me if there’s any pain,” my GP said. Since there had been none for weeks, I assumed that everything was going to be fine on the weekend.

I was wrong.

 

Drop everything and go now!

The very next day, a Friday, I suddenly felt sharp pains around my belly button and called my GP immediately.

“I had been expecting that,” he said. “I have already made an emergency ultrasound appointment at the hospital for you, so drop everything and go now! I’ll call you tomorrow with the results.”

I was stunned — and then promptly panicked, but not because of his tone: I had just washed my one and only cotton mask, and I needed it to enter the hospital — darn pandemic! So, I spent 10 minutes blow-drying it, donned a pretty summer dress and a hat, and in 30-degree heat walked 12 minutes to the hospital.

An hour later, when the ultrasound technician had outlined whatever was growing in my tummy seemingly a hundred times, I did not know what to think anymore. I also dreaded having to tell my relatives and trusted friends about this sudden turn of events, because I knew they would be worried.

As a level-headed individual who has never been prone to emotional outbursts, I had expected everyone to be shocked to the core (I was!) and then offer their full support (because I would have!). I was not prepared for the deafening silence my difficult news elicited at times, however. Thankfully, nobody ever hung up on me.

When I woke up the next morning — pain-free and full of energy — I was confident that it was all going to work out.

A call from my GP signalled the opposite, however. The ultrasound had shown a large “sinister mass” in my belly, and a CT (computer topography) scan appointment on Monday morning (“that fast — during Covid?”) would tell us more.

“But I feel better than ever! Can I at least play for the church service tomorrow?” I said.

“Yes, but if the pain comes back and increases, please go to the hospital right away,” he replied to my amazement and delight.

“It won’t,” I thought.

Wrong again.

When getting ready the next morning, I noticed a spot of blood in my panty liner which made me sigh out loud. Being post-menopausal, I knew what it meant — an impending cancer diagnosis. Should I call my pastors and arrange for a substitute? I decided against it, given that praying and singing with others always helps me feel grounded and, most importantly, useful.

By noon, the pain returned and increased to the point that I asked a trusted neighbour to drive me to the hospital (no walking this time!). I waited for two hours at emergency, trying to distract myself by reading a historical romance novel with a predictable plot and outcome (“Marriage-resistant duke falls in love with beautiful and incredibly smart commoner”). Finally, I was told by the attending physician that because of my upcoming CT scan, he was not going to do anything but send me home to take painkillers.

“So, I am not going to die tonight?” I asked him, trying to put on a humorous front.

“No, you won’t, and now get out of here before I change my mind,” he replied with a smile on his face. My heart, however, was heavy.

Later that evening, I talked at length to my sisters, several trusted friends, and my pastors. I asked them to keep me in their prayers (“You got it, Barb”); I had a feeling I would need them.

The CT scan itself was a quick affair. Feeling pain-free and full of energy again on that sunny, warm Monday morning, I not only walked home from the hospital, but also sat down to put the final touches on a research project that was due soon: an informative entry on the life and musical works of my favourite composer (“Mr. Fasch”) to be included in the prestigious Grove Music Online Dictionary.

Then the phone rang. It was my GP’s administrative assistant, who asked me to come in to see him in the early afternoon. When she said, “You may bring a support person with you,” I braced myself for the worst. My best friend, a long-time high school teacher and fellow musician, immediately offered to accompany me.

The news was grim. My ovaries had grown all the way up to my belly button, but there was also a lot of free fluid that needed to be drained — immediately. My physical reaction to that bit of news was immediate as well: I felt completely numb.

“I need you to have blood drawn first before you go to the hospital; certain tumour markers need to be checked right away as well,” my GP continued.

“This is serious, Barb,” my best friend, who had miraculously survived a heart attack and a stroke in 2011, commented on our way to the lab. “I have never seen a doctor speak and act with such a sense of urgency.” I agreed.

“Did you also see the look on his face when you started coughing?” I asked her.

Fluids drained after CT scan

I then pleaded with her to have it checked out, as it had been going on for months, and she had often complained about fatigue as well. Neither of us knew at that time that this conversation would be the beginning of her very own cancer journey.

My best friend dropped me off at the hospital, where I spent the next three hours watching, in both horror and relief, as a total of 4.5 litres of fluid were drained. Suddenly, my belly was flat again — and I felt about ten pounds lighter overall, having emptied my bladder completely at the hospital for the first time in months.

 

A visit from the other side

At the same time, I was still rattled from what had transpired earlier on when I was waiting to have the procedure, and the nurse had stepped away for a few moments.

An ethereal being had appeared at the end of my hospital bed.

“Are you ready to come with me?” it asked.

In hindsight, he looked remarkably like Andrew, the Angel of Death in the TV series Touched by an Angel, on whom I had had a secret crush as a university student.

I was stunned, to say the least.

The closest I had ever come to pondering my own demise had been during a beach holiday in Mexico many years ago. I am an excellent swimmer, yet a sudden cramp in my leg prompted the headline “Canadian graduate student tragically killed while belly-boarding near Cabo San Lucas” to flash through my head before making it to shore safely.

I answered the question posed by “Andrew” with a resounding “No!” I also remember feeling both angry and scared that the universe would propose such a ridiculous notion.

I was not ready to die.

Given the fact that my health had been excellent over the years (save for appendicitis in Grade 10 and a couple of broken wrists), there was no reason for me to follow in my parents’ footsteps. Both had died before their respective 60th birthday: my dad of blood cancer at age 52 after having been ill for 13 years, and my mom very suddenly at age 58, after suffering three strokes on three consecutive days despite taking high blood pressure medication for years.

I immediately turned to my intuition or inner guidance system for advice. Ever since I had become interested in energy healing in the mid-2000s, it has contacted me in the form of a distinguished-looking male guide wearing a top hat. He told me not to worry, and a wonderful feeling of a host of angels spreading their wings around me came over me. I knew then that I had nothing to fear.

When I told my twin sister and a long-time clergy friend, a fellow cancer survivor based in Alberta, about this unexpected and initially frightening incident, neither was surprised. The universe was trying to get my attention, they said.

They were right.

The next morning my body sent a message of its own: I felt like 50 tractors were running over me for what seemed like several hours. Thankfully, by the time my GP called in the afternoon via video chat, I was tired but pain-free and had asked my twin sister to join me via telephone to listen to his news. Tumour markers for ovaries, breast, and pancreas were all up, he reported, and it would take another 24 hours to find out whether the fluid they had drained contained malignant cells.

“Would it be a fair assessment, given this news, to conclude that I am not fine?” I asked.

I had thought very carefully about how to word my question ahead of time, given that he was so hesitant to say the word cancer out loud.

“Yes,” he replied simply.

My GP’s short, emotionally charged answer was as devastating to me as his advice not to have any of my family or friends travel 2000 kilometers east or cross the Atlantic to support me in the coming weeks and month. The risk of contracting Covid-19 and passing it on to me was simply too great.

My sisters and I were heartbroken. Who would take their place?

 

Small miracles

“Of course, I will look after you when you come home from the hospital,” said a dear friend who always stayed with me when she was in town. I knew that her schedule as a fellow academic would be flexible because she was on a research sabbatical until the end of the year.

Nevertheless, her heartfelt offer made me — who never cried — burst into tears.

“You have paid into the friendship account all your life, and now it is your time to accept blessings,” she reminded me.

I was possibly even more touched when a trusted neighbour friend who had lost her husband to cancer a long time ago, informed me and my worried relatives that from now on she was going to be my “go-to, in-house person.” She vowed to be there for me — “I will be checking up on you daily now, Barb!” — and to chauffeur me to the hospital, get groceries, etc.

Having lost my own mother at age 17, I felt that she had just gifted me with the most wonderful substitute — or had my trusted neighbour been sent by my “Canadian mom,” who had passed away in October 2019? A fellow German immigrant to Canada, she had, in part, been responsible for me pursuing an academic career (“You are a clever girl, Barb — go for it!”).

I also knew I could rely on her daughter, a close friend since university days and psychiatrist by training, as well as my clergy friend in Alberta for mental health support in the coming months. “We will get you through this,” these “sisters from another mister” told me, and I had every reason to believe them.

The following day my GP called with excellent news, for once — there were no malignant cells in the fluid! I felt relieved beyond words, as did my twin sister who I had asked to be part of the phone conversation. He had also arranged for a gynecological oncologist to see me as soon as possible. Incidentally, the word “cancer” still had not crossed his lips, even when I asked him when and what to tell my employer about having to go on medical leave. I was to wait until I had received a proper diagnosis, he advised.

“I was supposed to teach three classes in the fall,” I pointed out to him.

“Could you move one of them to next year?” he wondered.

“That’s a great idea,” I said and began putting together possible replacement scenarios that evening. Letting someone else teach the “little darlings” did not bother me. I was used to handing over my students to my colleagues whenever I went on research sabbaticals.

However, an e-mail from my academic dean as my immediate supervisor about her upcoming vacation made me disclose my news to her, her assistant, and my new department head the very next day. I will never forget their shocked faces — in gallery view, courtesy of Zoom — as I shared my “this is what’s been going on and what I think we should do next” plans with them. The little girl inside me was shaking, however.

“What are we going to tell the students?” I asked. In response, my department head and I prepared a letter to let them know about my impending surgery and medical leave. “Let’s say something like ‘Dr. Reul looks forward to torturing you again soon’,” I suggested, making my department head chuckle despite the seriousness of the situation.

Finally, we decided that I would contact those faculty members close to me on my own and otherwise say as little as possible for now, also not to worry anyone (“What you don’t know, can’t hurt you”).

Then, another, most welcome “small miracle” occurred. An instructor who was qualified, able, and willing to teach my fall semester classes was found within days. I was incredibly relieved, to say the least.

At the same time, I was wondering whether what was happening to me was, in fact, real. To that end, my clever top-hatted guide suggested that I would let my adult self (“Dr. Barb”) handle all the difficult tasks. This, in turn, would help calm my inner child. She was scared beyond belief by now and ready to throw a nasty temper tantrum at a moment’s notice.

“Make sure you are super patient with yourself and brutally honest as far as your innermost feelings are concerned from now on,” my guide advised. “I will try,” I replied.

Nevertheless, I wondered whether the road ahead would be filled with emotional traffic lights (“Red means ‘Stop!’”) or scary physical potholes (“Caution – Construction ahead!”) that I would need to circumvent carefully, if not avoid altogether. Turning to my guide for answers, I was greeted with silence. I knew from experience that this meant “trouble ahead.”

If nothing else, when the local cancer agency called to assign an ID number to me (“Please quote it every time you call!”) and told me to come in for a biopsy on July 31, my diagnosis had become official. But how could I have cancer, given that I looked like a million bucks and continued to be pain-free with energy to burn?

Maybe it was all a big mistake, and “Dr. Barb” and the little girl inside her would wake up tomorrow from this bizarre dream.

 

Take a deep breath!

I felt unexpectedly calm and even cheerful before the biopsy appointment. It took place at the cancer clinic located inside the other hospital, an easy 10-minute car ride from my place. I was relieved to be able to bring a support person, a welcome exception to the otherwise very restrictive Covid-19 hospital rules. A beloved colleague-friend accompanied me, and together we waited for 45 agonizing minutes and caught up on our respective lives (“Do you miss teaching aquafit classes at the pool, Barb?”) until my name was called.

Much to the merriment of the nurse who took my vitals, we kept cracking jokes in the treatment room. “Who knew that two middle-aged female university profs could be this entertaining, eh?” I concluded with a big grin on my face. I finally sobered up when the medical oncologist entered the room.

“So, who is that GP of yours who managed to get you on my table within one week during a pandemic?” she asked, smiling. It hit me that I owed a huge debt of gratitude to two special “miracle workers” — my fantastic doctor for turning into Superman when I really needed him to, and my wonderful massage therapist for urging me to go and see him in the first place.

I was also thankful beyond measure when the oncologist and her resident finished their examination (“take a deep breath!”). Since the pain had been excruciating — they had, after all, cut a tiny bit of flesh out of my uterus! — and nobody offered me a painkiller, I promptly threw up a few minutes later.

Everyone in the room but me assumed that it was a physical reaction on my part to finally having been told the ugly truth: I had at least endometrial cancer which begins in the uterus, if not two cancers — endometrial as well as ovarian — wreaking havoc inside me. In hindsight, I realized that if vomiting had been my body’s way of acknowledging my illness for the first time, it certainly had taken a long time for it to catch up to my mind.

I was surprised to hear that the specific type(s) of cancer and stage(s) could only be determined during, if not after, surgery.

“Would Monday, August 10, work for you?”

“Then I will spend my 53rd birthday in the hospital.”

“Do you want me to move it by a week?”

“No.”

“Given that you are in excellent physical shape, you might be able to return home that evening to celebrate!”

We were both wrong.

“Do you want me to stick around for a bit?” my colleague-friend asked on our drive home.

“No, I’ll be fine,” I answered.

Using a professional, matter-of-fact tone that had served me well in previous crisis situations, I (or, more precisely, “Dr. Barb”) proceeded to tell my relatives and closest friends about my experiences at the oncologist’s office and the upcoming surgery. They assured me that they would be with me every step of the way on my cancer journey — and that they would keep the information private.

 

It is not your story to tell

Let me fast forward a bit to explain what I mean. I will never forget when a well-meaning friend cancelled a meeting for me in late August (“She is not well”). It prompted a phone call by a concerned acquaintance.

“What is really going on? You are never sick,” she asked.

“I had major abdominal surgery,” I replied. It felt positively bizarre to share my diagnosis and treatment plan with people who were not close to me — it was none of their business. Others had the nerve to scold me for not being in touch, arguing that they would have prayed for me if nothing else. “You can always start now,” was my cheeky response.

In hindsight, I should have anticipated, however, that certain comments would indeed upset me. My academic self was used to being critiqued by her peers (“Thesis statement lacks focus”) and had grown a thick skin over the years. My heart, however, was unsure how to interpret some of the feedback I received. “Then make it a teaching moment,” my wise clergy friend from Alberta suggested after listening to me rant about it repeatedly.

 

What to say when you don’t know what to say

So, how should you talk to individuals who share their diagnosis with you and/or are about to begin or already undergoing cancer treatments?

“Show sincere empathy in your response” and “refrain from giving advice of any kind” are, in my experience, the two most important things to remember in this regard. If you struggle with the first suggestion (“How do I do that?”) and/or resent the second (“That is what I always do because it works!”), you are probably not alone. At the same time, you will arguably risk hurting the other person who likely lacks the energy, if not the confidence, to point out your unintentional faux pas (if not to you, then to others).

Replies such as “my heart goes out to you” or “that really sucks!” always made me feel better. I also appreciated direct offers of assistance — “what can I do to help today — tomorrow — this week?” — more than having to reach out to others (“call me if you need anything”). Why? Because I was used to looking after myself and did not want to be a bother to anyone, especially during a pandemic that kept everyone on their toes already.

Reactions to my news that implied — even unintentionally — that the illness was somehow my fault because of my busy lifestyle, were never welcome because they made me feel like I needed to defend the way I had chosen to live my life so far. Listening to depressing or plain wrong cancer survival statistics (“I am certain you will be amongst the 43% of women who make it”) was similarly annoying. Several people also surprised me by bursting into tears when I did not expect them to and others by staying remarkably calm (you know who you are!).

My least favourite response was to have someone grieve my future for me (“You could die!”) — did this person have access to a special crystal ball or had they acquired a medical degree overnight to make such truly scary predictions with such confidence? I also tired quickly of other, undoubtedly well-intended comments such as “you’ll be just fine,” “you are strong and have nothing to worry about,” and especially “the worst is (soon to be) over.” These comments always made me turn to my favourite, admittedly unhealthy, coping mechanism — Nutella!

“I have a suggestion,” my twin sister said when I told her that I had no interest in watching my waistline expand while simultaneously wasting precious energy on feeling upset, if not angry.

Incidentally, she herself had found my “Do not tell anyone!” command tough to follow.

“I feel like I am pretending everything is fine when the opposite is true,” she said.

“I know,” I replied. “But I want to protect you of all people from being overwhelmed by others wanting to know how I am doing.”

“Fair enough,” she responded. “Why don’t you tell repeat offenders to think of your medical journey as a pregnancy of sorts, with every day being different?”

“That’s a brilliant idea.” I put it at the top of my own “what to say when you don’t know what to say” list. I also requested from my relatives and friends who checked in regularly — bless their hearts! — to open the conversation with the question “How are you doing today?” It allowed me to share as much as I wanted when I felt ready.

The most helpful comments were offered by my fellow cancer survivors (“There’s a pill for that, Barb!”). They also taught me to call my doctor or oncology nurse if I had questions or if something did not feel right (“That’s their job!”). And I was not to ask the internet for advice (“You’ll regret it every time”). In hindsight, they were right, of course.

In fact, “Dr. Google” was not helpful either as I pondered certain big-picture questions that worried “Dr. Barb” the most. The majority focused on the future. What was taking an extended break from both teaching and research going to feel like? Granted, I was a full professor with tenure. Would a lengthy medical leave seriously hurt my career, financial goals, and long-term retirement plans? Would I be devalued, if not stigmatized, in the highly political university environment that valued productivity over all? And what impact, if any, would the pandemic in general and Covid-19 restrictions specifically have on me returning to work, whenever that would be?

One question focused on the recent past. I was the third female faculty member at my College to have been diagnosed with cancer in the past five years. Granted, our types of cancer were all different. But our three offices were hidden away in the northwest corner of the building, far away from our colleagues. Was the shared location a mere coincidence or an important signal that something beyond our control had made us more susceptible to getting sick with cancer?

“Stop worrying,” my main guide said with a stern voice every time “Dr. Barb” pondered the past or the future. “Focus on your little girl inside and the present instead.”

 

The Power of Now

To everyone’s delight, including my own, I felt fabulous during the week that preceded the surgery, probably because of a new and most welcome addition to my living room. Dear friends of mine had asked me a couple of days after the biopsy whether there was something I had always wanted to buy myself that would make a difference in the coming months. I promptly said, “A new, smart TV!” A few minutes later, I hopped into their van to go shopping. A couple of hours later, I happily cued my favourite show on German television (Der Bergdoktor, a series set in the Austrian Alps focusing on a handsome medical doctor on whom my inner child had a big crush) to watch on my new, big screen television.

“Why didn’t I make this purchase much sooner?” I asked my friends, grateful for their help.

“Now is perfect,” they said with a smile.

Staying grounded also helped me manage endless phone calls, get through multiple pre-surgery appointments, and endure being poked in both arms incessantly (“You have good veins, Barb”). Filling out a detailed “Living Will” which communicates my wishes for end-of-life medical care to my medical team as per the hospital’s request, did not scare me too much either. It did, however, necessitate another “which one of us will go first?” conversation with my twin sister.

We had last addressed this admittedly tough topic in January 2020 when I updated my will and had given her a copy as my executor. Even though neither of us was expecting me to not wake up from the surgery, preparing for the worst-case scenario while hoping for the best outcome now made complete sense to both of us. In hindsight, I realized how surreal it must have been for my twin sister to imagine a world without me in it — we had been together ever since conception and exceptionally close ever since our mother’s untimely death.

 

Weekend woes and weekend joys

“Hello, I am calling to remind you about your operation on Monday at 8 am,” said a pleasant female voice three days prior to the surgery, a Friday afternoon.

“How could I forget?” I thought. I had been wearing a hospital wrist band for several days already.

“Do you have any questions about the bowel preparation medication you are to take on Saturday and Sunday?” she asked.

“I was told I did not need to do that,” I replied.

“You do,” the nurse insisted.

Her colleague had apparently not read the doctor’s instructions all the way to the end! (I promptly wondered what else had been missed.)

“Drink apple juice after having taken the medication to keep up your electrolytes,” she said.

“No worries,” I replied. I had just bought some because the oncologist had recommended that I drink it the night before the surgery.

On Saturday morning, my bowels were not at all amused. In the afternoon, my throat suddenly became very sore and half an hour later, my chest was on fire. I checked my temperature: it was normal, which meant that it was probably a cold rather than Covid-19. Should I call the clinic to report my symptoms and risk being told that my surgery would be postponed?

“No way!” I thought. Instead, I consulted “Dr. Google” who diagnosed instantly that acid reflux, specifically the apple juice, was to blame. He suggested switching to a clear carbonated drink which made me run to the corner store for some ginger ale.

By the evening I felt so well again that I walked all the way around the large lake near my house and enjoyed the fantastic weather and gorgeous sunset.

 

Sunset at the lake

“Hello Barbara — how are you doing?” said a familiar voice behind me. It was my favourite yoga instructor, with whom I had lost touch after starting to exercise with my twin sister online. She noticed my wrist band, and when I told her my news promptly offered to drop off food after I returned from the hospital.

“You are on!” I responded, not at all surprised by her generosity. She was surprised, however, when I told her about my favourite part of her wonderful yoga sessions which had kept me sane during stressful work weeks.

“You always reminded us at the very end of class that we are all connected,” I said.

“It has meant that much to you?” she asked, surprised.

“It has meant everything and even more now,” I replied. And then I thanked the universe for reconnecting me with one of the most positive, smiley people I had ever met at a time when I needed her the most.

“I am ready for tomorrow,” I concluded on Sunday evening. My bag was packed, and my twin sister had kindly agreed to update everyone who knew afterwards. My own pre-surgery agenda had included both praying (it pays to be friends with clergy!) and reading, including the classic When Things Fall Apart by Pema Chödron, as suggested by my trusted massage therapist. Moreover, creative visualization exercises had informed my hour-long meditative walks that I (still!) went on almost every day after having been diagnosed. I am strong, I am healthy, I am cancer-free was my chosen mantra, followed by This or something even better now manifests for me, in totally satisfying and harmonious ways, to the highest good of all concerned. This statement — courtesy of Shakti Gawain, whose book on creative visualization is another classic — was perfect for my inner optimist because it focused on the best outcome scenario. When my MD friend’s husband (whom I love dearly) implied that the operation would be “a bumpy ride,” but that in the end I would be fine, I decided to just ignore him.

 

After all, what could go wrong?