By Brenda Cummings
This is the last part of Brenda's story. To read part 2 click here.
The ensuing period brought more worries. The alendronate I’d started taking for my osteoporosis proved problematic for someone with acid reflux, which I’d reported to my GP but hadn’t changed her prescription. On the day before my scheduled CT I awoke to find a strange lump in my throat, and when I tried to swallow a bit of orange I found it impossible. My throat was locking up like a zipper, preventing anything from going down, with copious saliva production needing to be expelled. When it didn’t settle after a few hours I went to the local ER where I sat for four hours, spitting into a sink, and was given a proton pump inhibitor to reduce the production of acid. That was a no-go, being unable to swallow, so they injected a muscle relaxant. Forcing down that tiny pill was excruciating, but the only alternative was to get myself to the Chatham hospital for an emergency esophageal dilation.
In advance of my CT scheduled the next morning – in Chatham – I was required to drink two bottles of thick barium contrast. This clearly wasn’t happening as I spent the 50-minute bus ride spitting into a cup I’d brought along for the purpose. At least the chest portion, I reasoned, used an IV contrast so the most critical aspects of the imaging should still come through.
Five days passed before I could swallow anything beyond small sips of water, for the daily PPI, and variously flavoured liquid meal replacements. At 5 feet 5 inches I was barely a hundred pounds and losing my energy. I had a history of urinary tract infections, and the following Saturday felt the telltale signs of another one coming on, this time with bleeding which I’d never before experienced. Back to the emergency department for another prescription. It didn’t work and in two weeks I was at the hospital again with intense pain and profuse bleeding, returning home with a prescription for Sulfatrim antibiotics.
With the UTI now under control, I got the call from my respirologist. He asked to book an immediate Zoom appointment to discuss my CT results. At my request, he gave me access to the online dynamic imaging, which he walked me through. There was moderate swelling of the thoracic lymph nodes, with a series of small lesions detected in the right pleural lining. (Through my own research I discovered that these lesions can damage the phrenic nerve, which controls the diaphragm and can ultimately paralyze it.) Half a dozen lesions were also observed in the liver, four of which were under a centimetre.
While the next cytology definitively confirmed stage IV cancer, it was insufficient to determine the presence or absence of the HER2 protein, which is normally gleaned via a tissue biopsy. It did, however, reveal something interesting to me. The cancer, I was told, was highly responsive to hormones – 90 percent estrogen and 60 percent progesterone. This gave reason for optimism since some targeted drugs had been developed in recent years, with promising results for this type of cancer. What surprised me was my clear recollection that the original cancer was unresponsive to hormones. Discrepancy aside, the news was reassuring.
In the short term, I was booked to have a catheter inserted in my chest to drain the pleural fluid via home care visits. Once the procedure was completed, I opted to attend the VON clinic at my local hospital every 48 hours to perform the drains, becoming quick friends with the kindly nurses.
Ahead of my first consultation, the London cancer centre was busy researching my history to compare my primary cancer of a quarter century earlier with the current version. Three weeks passed before I finally received a phone call from the intake representative. They were having a difficult time locating my previous records, with repeated requests to the Toronto hospital turning up nothing. On providing the names of my oncologists, who had obviously moved on in their careers or possibly even retired, I was gobsmacked to be told that patient records remain with the doctors themselves. Doesn’t the province maintain a central repository of patient records? No, it doesn’t. Then doesn’t the hospital at least maintain its own records? Apparently not.
My adrenaline now pumping, I knew what she was going to ask. I was already reaching into the back of a dark closet as the rep faintly suggested, “You wouldn’t happen to have…?” “Yes!” I replied excitedly. It was the Thursday before Easter and the cancer centre was closing for the four-day weekend, but I promised to scan the documents and email them to the rep before her return on Tuesday. My initial consultation with the lead oncologist was scheduled for the following Friday and there was no time to lose. “Let’s get this show on the road!” I rallied.
* * * * *
To those who’ve been there, I don’t need to describe how it feels to join the “club” of cancer patients as we check into cavernous waiting rooms and take our numbers. The sign in Haematology that reads, “If you’re going through hell, keep going.” Sitting with pagers as we wait for prescriptions. Hearing the gongs and applauding as others complete radiation or chemotherapy treatment. Or the chilling “Code Blue” announcement as we wait in empty exam rooms to see our doctors, and those in training.
But eventually, we see them, and progress is made. The first question to my team was obviously, “How could I get metastatic breast cancer on the same side where I had a mastectomy?” They speculated that the current cancer slowly developed from residual tissue left behind from the mastectomy. OK, so why is it so much different from the primary cancer? Shockingly, it was determined to likely be a new cancer and not a recurrence of the original. While not definitive without a biopsy, it seems I was just unlucky.
The welcome news that I was indeed a candidate for one of the new targeted drugs was tempered by the fact it was still under patent. In addition to costing over $5,000 per month (I don’t have private insurance), palbociclib requires Exceptional Access Approval from the province and there’d be more nail-biting as I waited weeks for the decision. When it finally came, I was surprised to be informed first by the manufacturer, Pfizer, and not by my doctors. A few days later I was paying a Purolator driver for delivery of a small white bag containing the precious medication, along with an aromatase inhibitor to reduce estrogen. I celebrated by emailing the words “Down the hatch!” to my family.
Miraculous as it seems, I was feeling better within a few days. I slept for the first time in weeks and slowly but surely the volume of fluid drained from my chest started to decline. Four months after inserting the catheter, it was finally removed last July. I couldn’t have been happier.
Throughout the past year, I’ve had seven CT scans, two MRIs and a bone scan that revealed trauma to three ribs and degenerated lumbar vertebrae, in addition to the more common degeneration of hands, hips and knees. With past and present chemo drugs potentially accelerating bone thinning, I was put on semi-annual intravenous infusions of zoledronic acid to deal with the osteoporosis. I’ve undergone two gastroscopies with esophageal dilation to “stretch” an identified throat stricture, with a third procedure in the calendar. While the right hemi-diaphragm is still stuck in exhalation mode, meaning that it does not fully relax after exhaling, my oxygen conversion consistently measures between 97 and 100 percent.
Best of all, recent CTs have indicated shrinkage of liver lesions, with the larger two assessed as unlikely to be related, and pleural lesions spotted on the first scan have sunken into scar tissue.
If I’ve learned anything from this experience, it’s that nothing is a given when it comes to cancer. I savour each day and begin the next with simple gratitude. I know that everything can change in a heartbeat, but worrying about the next beat can only bring palpitations. And when it comes to mBC, stress is the number one enemy.
Am I in denial? Partly perhaps, but that is how I get up in the morning. I will deal with tomorrow when it comes and do what I can today to lead a life without regret. If you are facing this journey, may yours be long and happy.
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