Our Cancer Journey – So Far

Back in June I wrote about a diagnosis of spinal cancer that my wife, Mary, received, and many of you have been wondering how she’s doing. So here’s our story so far, plus a question I have for you.

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A Sudden Change

Here in Canada our socialized medicine system is under a heavy load, with long wait times. Some people say the wheels are falling off Canadian health care. That’s why a phone call from our local medical clinic at 9am in late May came as such an ominous surprise. Normally, if you want to make an appointment for not-too-urgent issues at this place, you could easily wait 4 to 6 weeks to see a doctor. But apparently that’s not always the case . . .

“Hello Mary? This is the doctor’s office. I need you to come into the clinic today at 2pm. And be sure to bring Steve with you.”

Clearly, this would be no social visit.

Long story short, a CAT scan Mary had two weeks earlier because of a strange feeling in her throat turned out to be a large growth on the second vertebrae from the top. It had pressed your esophagus nearly shut. The C2 vertebrae involved was also sufficiently eaten away that Mary’s spine could break at any moment. We didn’t know what the growth was yet, but we would find out. This is when things kicked into high gear.

Who You Know

Our local doctor was and is great, and promised to get things fast-tracked with the nearest big city hospital, a couple of hours drive away. But “fast tracked” in Canada right now meant we were warned that we probably would not hear from a surgeon for five weeks. “If I don’t hear back by then”, our doctor explained, “I’ll follow up.” Five weeks is a long time when you’ve been told to immediately put on a neck brace because your spine could break at any moment, resulting in more-or-less instant death or the remained of life in a wheelchair. Besides this, cancer doesn’t usually wait around.

As a Canadian I’m grieved to see our once-beloved healthcare system struggling under an impossible load, both grieved and guiltily thankful that we found a way around the delay in Mary’s case. According to Canadian government numbers, as reported by secondstreet.org, at least 17,032 patients died in the 2022 – 2023 time period in Canada while waiting for procedures that could have saved their lives if that care had been delivered in a timely way. Depending on how you look at the numbers from all provinces, this could be as high as 30,000. Sad, especially considering I’ve never seen any political leadership that offers a substantial plan to turn things around.

Mary has a relative who is an executive at one of the biggest and most advanced hospitals in Canada. After a few messages and phone calls, Mary had a bed waiting at one of the best cancer hospitals in Toronto. The next day she was on a plane to the big city. Should things have to happen this way? Definitely not. That said, I’m thankful there was some way to get some attention in a timely fashion. As it turns out, when we finally did hear from that first hospital, they told us the case was too complex and they couldn’t handle it. In the end she would have been in St. Michael’s anyway, she just got there sooner.

One in a Million Cancer

Mary has what’s called chordoma cancer. It literally happens in one person per million each year, and chordoma’s have the strangest cause I’ve ever heard of. When human beings are growing in their mother’s womb, tiny, flexible guides called notochords develop as a pattern along which the spine will eventually form. Normally these notochords disappear just before or after birth. But when they don’t disappear notochords can sometimes trigger chordoma cancer. How often, or what the mechanism is, no one knows.

On the plus side, chordomas are typically slow growing. 18 months before her diagnosis this past spring, Mary had a neck X-ray because of extreme neck pain that kept her sleeping in a chair for 6 weeks, unable to lie down. That incident may have been because of the chordoma or maybe not. The old X-ray was instructive, though. While none of the radiologists or doctors who examined the X-ray at the time when neck pain was the issue spotted the tumour and decayed vertebrae. But the surgeon who would remove the cancer in a few days spotted it right away when I showed him the old image after he lamented that “it would be nice if we had some benchmark imaging.” That old X-ray on my laptop served as a useful tool, showing us that the tumour hadn’t grown appreciably over the last 18 months. A little good news.

The thing about chordomas is that since they’re so rare, it’s not at the leading edge of research. Clearly Mary needed to have the tumour removed, and also to have her top four vertebrae fused because of the decay of C2 (that’s the second vertebrae from the top). Chemotherapy does not work with chordomas, we’re told, and radiation is the only recommended followup procedure from mainstream medicine. More on this later.

Mary and I were 50+ days in Toronto this summer, with me spending each day at the hospital. She received three major surgeries during this time:

1. A major biopsy through a 3″-long incise in the back of her throat to examine and assess the growth.
2. A 7 hour operation to remove the tumour, going in from the side of her neck. The tumour was located in a very congested area, with the spinal cord, nerves, and major blood vessels all in the same place.
3. A 4 hour surgery to fuse the top vertebrae with two titanium rods to stabilize the spine because of the damage caused by the chordoma.

Mary’s surgeries were about as extensive as these things get. She came out of them with a tracheostomy for breathing, a stomach tube for feeding, and every tube and machine imaginable hooked to her. The surgeons did a masterful job and their work turned out as well as anyone could expect. But when it comes to cancer, it’s rarely a “one-and-done” affair.

When I was allowed to visit her in the intensive care unit after the second operation (the most involved one), Mary couldn’t speak, but was somewhat conscious. “How are you feeling?” I bent down to ask.

I couldn’t hear anything so I grabbed a pencil and paper for her to write an answer. “I feel like I’m in a five star hotel in purgatory”, she joked. A sense of humour is always a great thing, especially at times like this.

Rapid Healing, But . . .

The doctors were genuinely surprised how fast and well Mary healed from the three surgeries. She’s 61 years old, a healthy weight, and fairly vibrant. If you saw her today she looks completely normal. Her neck is stiff (and always will be because of the titanium rods), the back of her head remains numb, Mary tells me her head feels harder than it did before, and until new bone grows completely over the screws securing the titanium rods, caution needs to be exercise to avoid the anchoring screws becoming loose. So Mary likes to joke about this: “I’m a stiff-necked, hard-headed numb-skull with possibly some screws loose!”

Not All Gone

As I write this, next week Mary will have the results of MRI scans she’ll have to have every 3 months for a while. The scan that happened three months ago shows a 0.5 x 0.7 x 1.0 cm remnant tumour that could not be removed surgically. Even if this had not remained, microscopic cancer cells can still exist and continue to grow. All of this leads to a question. Two questions, actually, one for us, and one for you.

Radiation is the only conventional treatment that’s recommended at this stage, but it seems to us that there are too many drawbacks to make this look attractive. Besides the tissue damage that could result in permanently losing her ability to swallow (stomach tube feeding for the rest of her life), and the permanent damage and weakness to surrounding bone, there’s the fact that according to one doctor on the case, radiation generally just sets chordomas back for a while, but doesn’t eliminate them. Chordoma’s are typically slow growing, and we know one case where surgery only (no radiation) has led to 10 years of good health with no regrowth. But on the other hand, chordomas can sometimes get very active after surgery, growing and spreading rather quickly. Cancer brings many things into your life. Uncertainty is one.

Alternative Treatments

All of this has gotten Mary and I looking at alternatives to get her chordoma dead and gone. I had no idea how many clinics around the world do this kind of thing. There are even services out there that help you sift through all the alternative clinic options. Most use various approaches to get the body to recognize the cancer and get the immune system working to kill it. Where conventional treatments fit into one of three categories – cutting (surgery), burning (radiation), and poison (chemotherapy) – most of the alternatives attempt to get your own body to fight the tumours.

So, our big question is this: What should we do? We’ll know better in a week where we stand, and I’m curious to see how Mary’s twice-daily use of Essiac has affected things. This is a herbal mixture pioneer by a Canadian nurse name Rene Caisse about 100 years ago. I’ve seen Essiac do great things for people with incurable cancer. Will it help Mary? She’s been taking it ever since she got out of hospital, so we’ll see after the scan.

A Question for You

Do you have experience with alternative cancer treatments? Perhaps even involving chordoma? We’re gathering information right now, looking for wisdom on how to proceed. One of the problems with many alternative cancer clinics is that they’re so massively expensive – it’s easy to spend $50K. Another is the lack of clinical data about how effective these many alternative treatments are.

Since clinical trials are so expensive to conduct, no one is going to carry them out on treatment regimes where the investment cannot be recouped. None of the alternatives I’ve heard of are patentable, so the investment in trials cannot be recovered with profits. And while it’s not logical to conclude that alternatives don’t work just because there’s no trial data (alternatives certainly do work for some people who were given up as terminal), it’s just that there are precious few numbers to look at while assessing.

Thoughts, prayers and insights would be appreciated. Thanks for reading. You can connect with me at [email protected]

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– Steve Maxwell