The Winter of our Disconnect
A story about discussing the hard stuff before it’s too late.
Story written and narrated by: Glenn Vanderkloet
Tunes in this episode: “No One’s Home” - Glenn Vanderkloet
Photo Credit: “Stolen Flowers” - Photo Taker Unknown (Glenn’s Mom)
The Winter of our Disconnect
It’s April, 2022, as I open this blank page in my word processing program and begin to type. April is a heavy month for me. Not heavy in the sense that I eat too many hot cross buns during the Easter holidays, but heavy as in difficult to bear. For most of us in the northern hemisphere or for those belonging to the Christian faith (Which I do not), April represents rebirth, regrowth, and a renewed sense of well being due to the warmer weather. Also, if you enjoy hot dogs and dough, it represents National Pigs in a Blanket Day on the 24th. For me, however, April represents something a shade darker than Jesus, tulips, an increase in sunlight, and party snacks. It represents twin tragedies in the form of death. Both my mom and dad passed away in the month of April, seven and 12 years ago, respectively. It always feels strange to me when their death anniversaries come around just as the days are getting brighter and the smiles on stranger’s faces are appearing with more frequency. It seems to me that death should only occur in January or February, when the lack of sunshine and cold weather are already sucking the life out of us. At least that’s how I feel about those cruel months. I guess the same doesn’t apply to those among us who like winter sports and watching the sun set at 4 in the afternoon. Come to think of it though, cold, unforgiving weather does play a small role in my mother’s passing, by way of a snowstorm outside the hospital window, as her doctor delivered the devastating news that her suspected cancer was widespread and likely terminal. This was the second and final time she would hear this.
Mom started feeling “off” a couple of months prior to that life changing meeting with her oncologist. It was mid-October, or more specifically, Canadian Thanksgiving weekend, of 2014. My partner and I drove out to the house I grew up in to have dinner with mom, my two siblings, and their families. We were the first to arrive, around mid afternoon, on what was a spectacularly warm and sunny autumn day. I wouldn’t typically remember a detail like the weather, but unbeknownst to me at the time, that was the first day of what was to be a very challenging six month period in my life and it’s still quite vivid in my memory.
The smells of traditional Thanksgiving fare greeted us as we walked in. Turkey, stuffing, potatoes, and various types of pie. Everything seemed as it should. However, as we took our shoes off and walked from the foyer up to the main level, we saw mom laying on the couch. My mom was something of a busy body so this was unusual. She told us that she didn’t feel well, but had still managed to prepare dinner, and that once my brother and sister arrived, we should go ahead and eat without her. It was unfortunate that she was feeling tough, but we chalked it up to a seasonal flu. The rest of that day was uneventful. We ate, then we ate some more, and then we lounged around with mom and watched Planes, Trains, and Automobiles.
In the days that followed, my siblings and I periodically checked in on mom. My father had died a half decade earlier so she lived on her own. Things remained status quo. She still didn’t feel great. Not much of an appetite and not a lot of energy. This pattern persisted for about two weeks until we convinced her to see a doctor. At this point, we were getting a bit concerned, in large part due to mom’s medical history.
15 years earlier, after discovering a lump on her neck, mom was diagnosed with metastatic breast cancer. The prognosis wasn’t good. It had spread to her bones and lymph nodes and medical staff told her it was terminal. Surgery was not an option and chemotherapy would only help in the palliative sense. Her oncologist felt that mom had nothing to lose, so opted to throw a hail mary in the form of a breast cancer medication called Tamoxifen. What happened next can only be described as a medical miracle because even the doctors treating her could not explain it. A month after starting the Tamoxifen regimen, her tumors had shrunk considerably, after three months, they were barely noticeable on the scans, and after six, they had vanished completely. We were all in shock. It was hard to believe that a tiny pill could wipe out so much disease. We were cautiously optimistic in the months that followed, and felt like we were on pretty solid footing after her one year checkup revealed that she was still cancer free. She carried on with that phenomenal medication until her five year exam cleared her to go on with life as she had before the diagnosis. A truly unbelievable sequence of events that I still have trouble understanding.
Now, having beaten cancer once, there was reason to worry that it had come back. Mom went to see the doctor and after some bloodwork and a urine sample, she was prescribed a sulfonamide to treat a suspected urinary tract infection. This provided some relief, knowing that something was being done, but there was still a nagging feeling within me that something more sinister was at play.
We all tried to be patient and let the antibiotic do its work, but after the drug had run its 14 day course, nothing had changed. In fact, mom was even more lethargic, and the thought, or worse, the smell of food was repulsive to her. We did our best to avoid the elephant in the room that was a potential cancer recurrence by attempting to stay positive.
After another hospital visit, which included a battery of tests and scans, we went home to continue the waiting game. This may be one of the most punishing, and least considered aspects of dealing with a potentially life threatening health issue. Waiting for results. Whether it’s only a couple days of waiting or a couple of weeks or more, it’s impossible to concentrate on anything but that impending phone call.
Finally, after what seemed like a lifetime, mom received a call to meet with an oncologist regarding her ultrasounds at a cancer facility in a larger, neighboring city. You don’t need to be an investigative journalist to figure out that this was not the call we wanted. Unfortunately, we didn’t have a choice in the matter. There was nothing to do except get in the car and go meet with the doctor. I offered to drive and mom and I set off on what was a quiet, nerve wracking trip to the cancer center for that stormy, December meeting that I touched on off the top.
My mom was an anxious person. Of course, she wasn’t only anxious. She was loving, caring, reassuring, and always available for a phone call, but she was also anxious. A worrier, you might say. Ostensibly, she tried to quell her anxiety and obsessive worrying by keeping busy. Whether it be yardwork, cooking and baking, spending time with her grandchildren, or keeping an active social life, mom had a functional system to maintain a healthy mind and body. Like a lot of us, whether we’ll admit it or not, mom felt better when she had a sense of control over her environment and she fostered this by keeping an immaculate yard and flower beds, maintaining a clean and welcoming house, and being extremely organized. For her, staying on top of things kept the undesirable thoughts at bay. This strategy works when it’s just negative thoughts that you’re trying to prevent, but when something like cancer comes along, the strategy is less effective. Cancer isn’t something you can control by keeping your floors clean. It totally envelops your day to day. It forces you to surrender to uncertainty. It challenges your mind to stay present and not worry about the future. Mom found the mental and emotional toll of cancer extremely difficult. Perhaps even more so than the physical symptoms.
The meeting with the oncologist was brief considering what was at stake. Mom’s ultrasounds showed evidence of what was suspected to be cancer in multiple areas of her body including the liver, ovaries, kidneys, and abdomen. You can’t be 100 percent sure based on ultrasounds alone, but apparently, you can be 99 percent. That was what a gynecologist told us later that afternoon in another consultation at the hospital. There was a 99 percent probability that the masses detected throughout multiple organs of mom’s body were cancerous. To say that was an emotional punch to the stomach doesn’t begin to describe the pain attached to news like that. I looked over at mom after the doctor was finished speaking and could see her eyes well up with tears. She asked the doctor if this meant she had a long, rough stretch of road ahead and the doctor nodded solemnly. The doctor also said that a biopsy would still need to be taken to confirm the cancer, but that this was mostly a formality. As the snow battered the landscape three floors down, mom and I slowly got up from our chairs and walked with weak legs and in stunned silence through the drab, beige hospital corridor toward the elevator.
The drive home was challenging in a couple of ways. First, the snowy, near whiteout conditions, made for low visibility and treacherous road conditions, and second, mom was obviously devastated, and finding comforting words after absorbing such awful news is next to impossible. We drove along at a snail’s pace, trying to avoid an accident, and listening to the radio at a low enough volume so as to not serve as a distraction but high enough to cut through the silent, suffocating sadness hanging in the air.
As we neared our exit off the highway after what seemed like an eternity, mom reminded me that she needed to pick up some pain medication that her doctor had prescribed. I pulled into the pharmacy lot and we went in. While we waited for the prescription to be filled, mom, who still didn’t have an appetite, suggested that we go to a nearby hamburger restaurant so she could at least force some food into her malnourished body. As mom unenthusiastically ate her cheeseburger, she wondered aloud why some people who get cancer can live with it for years, while in her and my dad’s case, the disease seemed to be on an expedited war path. She looked utterly defeated, as sad as I’ve seen a person look. Of course, I didn’t know what to say, and sadly, my silence was becoming a theme. My mom’s suffering had rendered me speechless when she needed positivity and encouragement the most.
When we finally arrived home after that hellish day, I immediately went to my bedroom and sobbed for several minutes. It takes a lot for me to cry. I’m not sure why but it does. In fact, I wish I could cry more. It might relieve some of the ever present tension within me. In any case, I’m glad it came out of me on that day. It was definitely cathartic and it reset my energy and focus for the challenges ahead.
A few days later, and as the Christmas season was approaching, mom went in to have her biopsy performed. She was told that the results wouldn’t be returned until after Christmas. More waiting. Back home, we tried to have as normal a holiday season as we could. We decorated the house for mom and put up a tree, but her condition was worsening. She was drinking meal replacement shakes to maintain some nutrition and she was in considerable pain and sleeping or dozing most of the time due to a heavy regimen of pain medication.
On the 23rd of December, mom’s back and chest pain became excruciating. She didn’t want to go into hospital so close to Christmas but she was left with no choice. The pain was unbearable and the medicine wasn’t touching it. We drove her to the emergency ward and the attending physician discovered fluid around mom’s lungs. This is also referred to as a pleural effusion. We were told that a procedure to drain the fluid would need to be arranged but being that it was so close to Christmas, it would take some creative scheduling to make it happen before the 25th. Christmas in the hospital did not sound ideal but mom was in rough shape, and having medical professionals by her side was a comfort we couldn’t replicate by looking after her at home.
The procedure was completed on Christmas morning. My siblings and I went in to see her in the afternoon and she was resting as comfortably as she could manage. She was definitely in less pain, but still far from a relaxed state. Unfortunately, the doctor said she was not well enough to go home and would have to stay in hospital until a confirmation of her diagnosis arrived, after which, the next steps would be decided.
We spent from the completion of the procedure on the 25th until New Year’s Eve morning by her side, day and night, waiting with increasing trepidation for the biopsy results. Finally, at around 10am, her doctor came in carrying a folder under his arm. One of my mom’s brothers, as well as a sister of hers were with me by her bedside. My brother and sister had stepped out for a bit. The doctor asked my mom’s siblings to leave and for me to stay while he gave mom the news. It wasn’t surprising but it was still devastating to hear officially. It was cancer and it had spread to her liver, kidneys, ovaries, abdomen, and lungs. It was inoperable and it would take her life. The only treatment option was palliative chemotherapy which might give her some pain relief and potentially extend her life by a few months. Mom started to cry, followed by me, and then mom’s siblings came back into the room and we all shared a moment of profound grief that I’ll never forget.
After notifying extended family and friends of the grim news, my mom, with support from my siblings and I, had to swallow hard, take a few breaths, and meet with the oncologist to discuss a plan moving forward. As mentioned above, none of the options were good. The oncologist said that mom could either double up on pain medication and let the disease run its course, likely meaning two to three months to live, or she could opt for chemotherapy with the hope of living around six months, possibly a bit longer. There was also a miniscule chance that the chemo would beat back a significant portion of the disease and extend her life for a year or more. After an emotional discussion with my brother and I, she opted for chemo.
With a plan in place, albeit a plan ultimately destined to end badly, my brother, sister, and I began to discuss the logistics. Someone would have to drive my mom to and from her weekly treatments, and we also decided that we should take turns staying overnight with mom at her house. The thought was that with pain medication and chemotherapy, mom would be well enough to stay at her house between treatments, until of course, she wasn’t. Since I was the only one of us without children, it was agreed that I would be driving and staying with mom the most.
This is the period of time throughout mom’s entire sickness that I remember with the most clarity. The trips to the cancer center for chemo treatments, and the evenings and overnights we spent together at what was now her house, and my childhood home. It was the dead of winter, everything was bleak, and somehow, the two of us had to find a way to get through this poorly dealt hand together. In particular, I had to find a way to buoy my mom’s dwindling spirits.
For as long as I’ve been able to form thoughts, I’ve had an active imagination. Always dreaming up fantasies and movie script like scenarios to protect myself from the harshness of reality. I imagined that this time spent with my mother would be incredibly special. The way I had it mapped out, mom and I would spend those car rides to chemo and quiet evenings at home together talking about the meaning of life and waxing philosophical about the profound, literal life and death experience she was dealing with. She would comfort me and tell me she wasn’t afraid of dying. We’d talk about gratitude and inner strength and a paradisiacal afterlife. We’d discuss what a wonderful life she had led and how she had zero regrets. I envisioned the lines of communication being wide open and we’d put each other at ease concerning all the fears and unknowns that were in front of us. I wanted us to connect on a deep level. I wanted her to tell me how much she loved me and how much I had meant to her as a son. I wanted to return that sentiment. To tell her what a loving mother she had been and how I always felt proud and bulletproof in her presence.
Needless to say, this ideal scenario did not play out the way I had imagined. Mom was terrified and so was I. We spent the bulk of those chemo commutes and winter evenings at home not saying much at all. Besides asking her if she needed her water re-filled or when it was time to take another round of medication, we mostly stayed silent. Both of our anxiety filled brains were too occupied with the hardship to come to make the most of the time we had left. In other words, neither of us wanted to breach the topic of eternal darkness. Instead of those profound conversations I was dreaming up, we watched hockey, terrible crime dramas, and reality shows on television, avoiding the topic of her sickness altogether. To be fair, mom was incredibly ill and on a heavy dose of morphine so it was definitely unreasonable of me to have grand expectations. In fact, it’s quite selfish to have any expectations of someone who is dying but that’s human nature I guess, always concerned with our own wants and needs. I blame it on human nature, but of course it could also mean that I’m just more selfish than most people. For what it’s worth, I try my best not to be. In any case, death is hard to come to terms with, even with a lifetime of warning.
Even in good times, our conversations rarely went to great depths. We loved each other and we both made that known in our own ways, but we seldomly, if ever, dipped into the heavy stuff. We never talked about what was bothering us or our emotional well being in general. In my parent’s eyes, life needed to be lived, not reflected upon. You were to keep busy so your mind didn’t drift into the strange and troubling corners of existence. Questions beget problems and we already had plenty of those. I don’t say any of this lightly or as a slight against my mother. She did not grow up as part of a generation that valued open, honest dialogue, and that’s not her fault. Unfortunately, these things are sometimes passed to the next generation and I’ve also picked up some of these emotional repression techniques. Ultimately, when mom was dying, we both lacked the tools to discuss the uncomfortable stuff.
Alas, the chemotherapy had very little positive effect. It did, however, stabilize mom enough to be able to stay out of hospital for a month or so. During this time, family and friends were able to visit mom in her space and not in the sterile confines of a hospital. Also, after the weekly chemotherapy sessions, mom was given a cocktail of steroids to lessen the effects of the poison and this meant that the day after the treatment, mom had more energy and pep than usual. She called these her “good days.” The energy boost from the steroids only lasted a day though and then it was back to feeling miserable.
In late March of 2015, two months after starting chemo, it was becoming clear that nothing was going to stop this disease. Mom deteriorated to the point where she needed to be hospitalized again and her doctor made the difficult decision to stop chemotherapy. After a week or so in our local general hospital, mom was moved to hospice care. There’s not a whole lot to say or do at the palliative stage except cherish the final days with your loved one. The last two weeks of her life were mostly spent sleeping while family and friends gathered to share memories. Mom died on April 17th, 2015, with many loved ones watching as she took her final few breaths.
I’m not exactly sure what I’m trying to say or do with all of the paragraphs above, other than to write about an emotionally complex and distressing time in hopes of it being somewhat therapeutic. Also, it still feels like there is something unfinished about the way my mom died and writing about it can sometimes lead to new insights. What I can say after this writing exercise is that I wish I had been more successful at putting mom’s mind at ease around some of the obvious fear and panic she was experiencing. It is heartbreaking to watch hope fade to despondence in a person you love. It was also frustrating to see that same fear and despondence infect me and my ability to be as strong as I would’ve liked to have been. Finally, it bothers me that mom seemingly did not feel comfortable discussing the end of her life with me. Again, I don’t place any blame on her at all, she was going through hell, but I do feel like an opportunity was missed to bring meaning to a common, yet, transformative part of life. I’m not suggesting here that I have regrets that keep me awake at night, but I am saying that it still weighs on me that my parents’ were often either too proud or too afraid to discuss the messiness of life. There’s no shame in talking about difficult things. It brings us closer to one another and the lingering doubts and questions that we all have can potentially be resolved. It’s also easier said than done. I gather that most emotionally healthy families are already aware of the power of honest and transparent communication but it took me a while and a few critical missteps to understand the importance. I’ve always been a late bloomer.
We only get so many cracks at telling the people we care about how we feel about them, and once they’ve died, that opportunity is extinguished. It would be nice to have another hour with mom, to talk about some things that would’ve paved the way for a more life affirming conclusion to her story, at least from my perspective. Unfortunately, resurrection is reserved for Jesus on Easter and not mortals like us, so I live with my missed opportunities and what ifs, and try to learn from the past as I keep moving forward.