A February Without a Valentine

My apologies for the delay in posting. I just concluded the four toughest weeks of my cancer journey so far.

You may recall, I was relaunching chemo after a five month break to deal with spinal and brain tumours. On February 4 I underwent three days of chemo in hospital, loading up on toxins. I also underwent my first CT scan of my lungs in nearly six months. I had expected some growth after five months of no chemo, but I was surprised. My lung lesions were more numerous and more tumourous. One had sprung up next to a kidney. My oncologist, known for not giving up easily, said we will get a few chemo rounds in and give it a chance to shrink the tumours, which has been my pattern over and over.

I went home, and began my worst chemo reaction ever, one that made me think more realistically about death and fear Paul Newman.  White and red cells dropped, plasma fell and my blood-clotting platelets plummeted. I was exhausted, and short of breath. The breathing was getting tougher every day. I bled urine. That sent me to emergency (empty!) where the nice admissions nurse and I had this exchange:

ME: “I have stage 4 cancer and just completed three days of chemo. I went home, where I suffered the usual nausea, constipation, fatigue, combined with this mounting shortness of breath and sharp pain in my ribs, but the reason I am here now is that, for the first time ever, I just filled a toilet bowl with blood.”

HER: “But apart from that you’re healthy?”

Robin and I laughed at her cheery optimism.

I was sent home with a referral to a urologist.  I returned days later about the worsening breathing. I was told the tumour was producing fluid, filling my right lung. Maybe it could be drained, but the specialist was away for the long weekend. Two days later I returned, coughing blood. It seemed to go away after a day, and so did we. Everything was a daze of illness and hospital visits.

One of the things I learned: no more Paul Newman. Two years ago, I watched Cool Hand Luke. The next day I had a CT that showed, for the first time, tumours were returning. Then, a week ago, I watched The Hustler. The next morning, the skin began tearing off my penis in bloody little patches. (Photos available for purchase). No more Newman movies! He is a blue-eyed harbinger of doom.

I returned to hospital February 16 and stayed for three days while they concluded fibrous pockets of fluid in my lungs could not be drained successfully. Within hours, I was accepted into the home oxygen program, where I realized my new reality was no golf, no long family walks, and as few trips up the stairs as I could manage.

I was a shut-in. Me and all the blue-haired old ladies, watching TV too loud and eating tinned nuts. We cancelled our trip to Hawaii.

Last Friday, I developed chest pains. We called an ambulance, whose staff determined it was not a cardiac event. It might be anxiety. What do I have to feel anxious about?

First thing Monday morning I met with my oncologist for my onward and upward pep talk.

It didn’t go that way.

“Mike, We’ve reached that point we’ve dreaded for years. I’m stopping your chemo.”

“Why?”

“Because it’s killing you.”

“Can’t we just reduce it?”

“It wouldn’t be nearly strong enough to eliminate your disease, which is worsening every few days. So I’m moving you into the palliative care program.”

And that’s where we are, waiting to see what that will mean. And how long that means (no one knows.) I pictured palliative care as 10 people living in a beach house, wearing white gowns and staring at the ocean while someone plays a harp.

More likely, it is going to be lovely home care people visiting, making sure I am not in pain and can move around the house comfortably. I want to see old friends, but mostly I want to hug Robin and Will, as we have some things to explain to him.

I will post again.

Makayla Sault was a child, not a symbol

An 11-year-old girl died Monday. Makayla Sault, an indigenous Ontario girl, had childhood leukaemia and received 12 weeks of chemotherapy last year. She hated it (we all hate it) and asked her parents to remove her from that regime. They did, opting for traditional indigenous healing.

Makayla had a fatal stroke last weekend. The family blames the after-effects of chemo, while doctors point out untreated leukaemia can trigger a stroke.

I absolutely believe her family’s first concern was for her health, but I wonder why she became the focal point of a larger battle about indigenous rights.  Of course, history shows it is exactly this issue — children — where western-European culture has hurt indigenous people the most. Their kids were systemically abducted, culturally whitewashed and often brutalized. From the First Nation perspective, what more important issue is there?

That said, I think Makayla’s family simply chose wrong. This story should not have been about one culture over another as some tried to frame it.. It’s about accessing the best health resources available. Chemotherapy has a 75-to-90 per cent success rate in treating childhood leukaemia. Victims of other cancers would love odds like that.

I am sure that, for centuries, traditional, nature-based remedies have helped people. However,, when it comes to cancer treatment, there’s something better now; just like we have better transportation and hygiene and communication, and most societies have embraced them. Medical science is not flawless, but I believe it’s the best we’ve got.

I’ve been following a naturopath’s advice for three months. In two weeks, I will resume chemotherapy, and immediately suspend all naturopathic remedies. My oncological team tells me the probiotic supplements diminish the efficacy of the chemo. I have to choose one over another, and I side with doctors, nurses and the years of research that is the foundation of their knowledge.

I wish Makayla’s family had done the same.  My sincere condolences go out to them.

Mmmmm, caramel kale

Apparently, something is up with my pancreas.
Apparently, something is up with my pancreas.

 

I never wanted to see a naturopath for my cancer.  I wasn’t interested in any therapy that might involve birchbark enemas and tea made from dirt. Besides, traditional western medicine has  kept me going for more than three years.

Then, last spring, a friend and cancer survivor told me her naturopath has made her stronger and healthier. She feels less afraid about cancer returning one day.

Who doesn’t want to feel better? I figured, at the very least, natural remedies might boost my immune system so I could better tolerate the chemotherapy.

So I went to the same naturopath my friend had seen. He seemed normal. His office was devoid of crystals, scented candles or Himalayan posters. He did not ask me if my stool sinks or floats. (I’m saving the answer for cocktail conversation.)

The only odd element is his handwriting; his note detailing my digestive health was an indecipherable collage of words, doodles and shapes (see pic above). Actually, indecipherable handwriting is one trait he shares with western doctors.

I told him I would take whatever he prescribed, as long as my oncologist approved. He recommended three supplements… and my oncologist nixed all three. They are probiotic immunity-boosters, and apparently work against the antibiotic chemo drugs. In response, my  naturopath pointed to several medical studies that concluded these supplements do not hinder chemo’s efficacy.

So it was a standstill — until cancer intervened. New tumours on my brain and spine put all chemo on hold while I undergo radiation. I have been off chemo for nearly three months now, and I decided to use this lengthy break to undergo a three-week course of naturopathic drugs.

I am halfway through. I take six pills a day. I drink a powdered beverage that shows why “mushy pea” never caught on as a Crystal Light flavour. I am trying to follow a diet that replaces every food I enjoy with quinoa and kale.

I told my naturopath I don’t expect all this to reduce my tumours. “I just want to improve my immune system.”

“I expect it to reduce your tumours,” he replied.

I hope he’s right.

The Bearable Lightness of Being

Tamara Gignac: Finding lightness. (Photo by Leah Hennel)
Tamara Gignac: Finding lightness. (Photo by Leah Hennel)

Tamara Gignac is a journalist, wife and mom.  She worked with my wife at the Calgary Herald, before Robin moved to Winnipeg to get her hands on my fortune (hundreds).

In June 2014, Tamara was diagnosed with Stage-4 colon cancer. She launched into chemo and her Facebook updates showed she was doing it with the right attitude: fierce and defiant, with humour. She’s enjoyed the restorative benefits of love and support from all around her.

A September fundraiser raised a lot of money for her and her family. While that is no cure, it really does alleviate fears over providing for one’s family in the future. (I was the beneficiary of two fundraisers, in Regina and Winnipeg, that are still helping my family. The fact that Tamara’s fundraiser netted more than mine only tells me I need to be a much better person.)

Last week, Tamara got the call all of the cancerous hope for: the tumours are shrinking. I know how that call feels. It’s not a cure but it buys time; another today with spouse and kids.

In June 2011, I was diagnosed. In August, I started chemo. By October, I was still waiting for news. Was the chemo working?

In my gut, I did not expect it to end well. So there I was, that October day, golfing with a friend and my father-in-law. My cell rang. It was my oncologist. His message, delivered succinctly and a bit excitedly, was that half the tumours were shrinking and the other half were gone.

I thanked him, and started crying  My golf mates walked up and put their arms around me. I finished the hole and called my wife, who tearfully asked me to hurry home. (I did, the minute I finished the round).

I remember most the palpable lightness throughout my body. I could feel something growing in my chest, like a balloon. My golf shoes seemed a few inches above the ground. For the first time in four months, I knew what genuine hope felt like.

I hope this is what Tamara is feeling right now. I am so happy for her.

 

Follow Tamara’s story at Team Tamara, a Facebook page started by her vast and loving group of friends and family. 

The Ouchiest

House of Pain
House of Pain

 

It was the tumour that broke the camel’s back. I was the camel.

One evening last week, I was reading a book (okay, a comic book) when I noticed a slow throb in the middle of my back. By 2 a.m., I lay on the floor, crying. My wife called an ambulance (a 40-minute wait for a 5-minute drive). I waited an hour for a bed, my back spasming the entire time. I yelped, growled and pleaded with my back to “Stop it, stop it, stop it!”  I finally got a bed, where I was reunited with my one true love. Morphine.

The next day, a CT scan found a new tumour had caused a hairline fracture in my seventh vertebrae. I am awaiting stereotactic radiation to eliminate the tumour.

I told Robin how the fracture felt like I was growing knife-edged angel wings. She remarked how much time we’ve spent talking about pain over the past three-and-a-half years.

It’s true. Before cancer, my pain threshold had been established through a hiking-related back injury. Since then, I’ve pushed that threshold again and again.

First, I suffered lightning bolts down my left leg, where the undetected tumour pushed against my sciatic nerve. After my first lung surgery, I felt a deep, sharp stab every time I moved. Morphine got me through two weeks of a sizzling radiation burn on my thigh. I have spent two days on a couch, unable to stand because a blood clot felt like needles being pushed through my legs. I’ve awoken in the middle of the night with chemo-related cramps that imploded my calves.

I can even rank them, pain-wise: 1) the broken back, 2) the lung resection, 3) the radiation burn, 4) the calf cramps, 5) the initial tumour, 6) the blood clot. That earlier hiking injury — once the greatest pain I had ever known — now ranks a lowly seventh.

There are silver linings. When I get my next blood clot, I can tell myself  “Could be worse. Could be a (see 1 through 5).”

I’ve also become a connoisseur of pain medication. Percocet? It’s okay. Oxycodone? Meh. Morphine? “You had me at hello.”

Also, I can play “Would you rather…?” really well. Example: “Would you rather have a spinal fracture or a radiation burn?”

I can answer that.

But I would love to stop playing.

Great news! Another brain tumour!

The future's so bright, we have to wear embarrassingly large shades.
The future’s so bright, we have to wear embarrassingly large shades.

 

For the cancerous, the best reprieve is when your oncologist says, “The latest scan is negative.”

I’ve never heard that.

The second-best reprieve happened to me this week. I was girding myself for another three days of in-hospital chemotherapy. It’s more boring than anything else, as the nausea and other side-effects tend to arrive a few days later. Still, entering hospital for those three days does take a lot of stiff-upper-lipping. I bring photos of Robin and Will, to remind me why I submit to this.

However, this time, fate intervened. A routine MRI (yes, my life now includes “routine” brain scans) located a tiny tumour in the back of my skull. Like the three tumours found in the spring, this is not as dangerous as it sounds. It can be removed by a gamma knife — a non-invasive radiation treatment I’ve described in past blogs.

My gamma procedure is scheduled for Sept. 24.  On Tuesday, my oncologist told me he wanted to remove any risk of chemo-radiation conflict in the weeks before and after the procedure. Radiation and chemotherapy work toward the same goal, but they don’t play well together, like Al Qaeda and ISIS, or the Oasis brothers.

So he cancelled this round of chemo, one day before it was scheduled to begin. Even better, my next round won’t start until  late October.

I left the hospital with a lightness I haven’t known in months. Despite hosting a cranial tumour and postponing life-sustaining chemotherapy, I felt… happy! As Pharrell says, “Raise your hands if you feel like a room without doxorubicin or ifosfamide.”

That reaction revealed how much I  dislike chemotherapy. For years, I have assured myself and others “It’s not so bad” and “I’m used to it now.” This week has made something very clear.

I hate chemo!

PS. I didn’t think anything could make me feel sympathy for Rob Ford, but I was wrong. I wish him well.

Tempting fate

willmike1

 

I don’t believe in a God of Cancer, since I’m still not convinced about a God of Everything Else. I concede there may be Cancer Faeries, or Gnomes or Sprites, because there are moments that seem guided by some outside force other than my oncologist. The mysterious vertigo that led to the discovery of three tiny brain tumours is one example.

A less celebratory example: I don’t talk much about the mouth sores some patients get, because I don’t get them. Yet there I was talking about these painful little dots last week, telling three different people that I have been spared. Within days, mouth sores appeared on my tongue and inside my cheeks. Eating is tough; so is talking. So, I get it Cancer Elves. I will no longer tempt you. I will keep my head down and my mouth shut. Unless that pushes the sores up against a tooth, in which case I will remain slack-jawed.

I do have certain superstitions and I suspect I am not alone among the cancerous. These are small things I do each time I check into hospital, from the practical (my own toilet paper roll from home) to the less logical (I won’t wear hospital scrubs).

The most obvious rule is that I never say “Damn, we have really got this disease BEAT!” Especially before a CT scan.

I don’t talk about retirement planning.

I think happy thoughts during an MRI, so I might give the tumour-fighting residue one last spark of strength.

I often cry during my first night in hospital, especially if I feel I have been a mediocre dad lately.

There are a few new superstitions I am thinking of adopting, such as : No walking under a ladder while receiving chemotherapy.

Just as actors refuse to utter the name of Shakespeare’s “Scottish Play” inside a theatre, I wouldn’t say “MacBeth” inside an operating theatre.

And I will never look into a mirror and say “Tumour Man” five times out loud.

The Walking Dead (gratuitous reference)

Where's that remote?
Where’s that remote?

How do I feel right now?

Tired. Knackered. Lacklustre. Pooped out (not really; this is constipation week). Fatigued. And yet, none of these words convey the pulse-deadening loss of strength I currently feel. For example, if I need to move from the couch to the big chair to grab the remote, I spend twenty minutes visualizing that action before attempting it. I’m talking about a remote, and I’m a guy. We carry remotes from room to room just to feel those reassuring contours.

I’m no doctor, but it feels like having AIDS and mono at the same time. Sorry, that’s insensitive. AIDS and Chronic Fatigue Syndrome. This is not typical. It’s one thing to be tired after chemo, quite another to feel like the Costa Concordia.

Here’s what happened.

I left hospital after three days of chemo, armed with a brand new type of pill to perk up my low potassium. And that was it. That was the pill that broke the pill counter’s back. I now take so many pills and needles that I can no longer keep track of my prescription drugs.

Thus, I forgot to take my daily dose of Apprepitant during the first two days at home. I also stopped my regimen of Ondansetron a day too early. So when the nausea hit, I was armed with only two-thirds of my usual anti-nauseants.

I puked ten times that day. None of it graceful. And because I couldn’t keep anything down, I became dehydrated. I even threw up the slow-release potassium pills, so that problem wasn’t getting any relief either.

I am now off to the hospital for four hours of saline hydration. Then, I will have to decide if I need one of those plastic pill-planner containers, compartmentalized for each day of the week. If the answer is yes, sell me some pleated white pants and a fanny pack and book me on an ocean cruise.

I need to feel better right now. After a record-breaking winter, cold spring and wet June, summer weather has finally arrived, just in time for the Winnipeg Fringe Festival, a weekend road trip, golf, and beach days. And I plan to be in the middle of it all. Bright-eyed and bushy-tailed.

Now, someone help me lift this laptop off of me.