Something to live for: HBO and sex

Believe me, I'm as surprised as you are.
Believe me, I’m as surprised as you are.

My health, my energy and my spirits are so up-and-down I really don’t know how I’m doing anymore.

In the past month, I have peed blood, sat down mid-stairway, napped all day, puked and fought for each breath. Thanks to a lung tap, a blood transfusion and new drugs, I have also had days of mobility, hours of easy breathing and bursts of energy. On Monday, I golfed, as badly as ever.

Some visitors have seen me folded in a chair, wheezing and falling asleep mid-conversation. One told another on Facebook: “I hear Mike isn’t doing well.”

Others might think “It’s remarkable how he’s bounced back” or  “I knew he was faking.”

I think I figured out one secret to this surprising upsurge: ensure you have something to live for. You know, in case the wife and child are not enough. Six weeks ago, I was deathly ill. Then I watched The Walking Dead to its conclusion. Then Mad Men started. Now there’s Game of Thrones. I come back, week after week, to see how the season turns out. Quality television is keeping me hanging on. I realized that to live longer, I needed to find one show that literally won’t ever end. So I’ve become addicted to the nightly news. Clever, right?

Unfortunately, I picked CBC news. I may get seven months, at most.

I want to make a special appeal. I see many people wearing T-shirts that read: F— Cancer. That’s nice and all. I mean, we cancerous appreciate it. But, if you really want to help, why not f— us? Our sex lives have suffered as a result of our disease. I am wrinkled, emaciated and bald. I don’t feel sexy. I don’t feel masculine. Five years ago, I weighed 200 pounds. Now I weigh 152. (“And this time, I’m keeping it off!” — Mike O, Winnipeg, actual cancer customer.)

The big advantage to sleeping with a terminally ill person is that there will be no drama. You’ll never have to sit by the phone and wonder “Will he call?” He won’t. He doesn’t have that kind of time. “Will he remember my birthday?” Not a chance. On the other hand, you won’t have to worry about us turning creepy and stalking you. Not for more than a couple of weeks anyway.

If you do this one thing, even as a purely charitable act, you will have given another person a beautiful memory they will treasure for the rest of their lives. Again, probably a couple of weeks.

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Safe At Home

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Some people who write me are sad for me. Thanks, but I started this blog to have fun. I’m still smiling and you should too. Besides, when the going gets tough, the tough get morphine.

I took my family to Victoria B.C. last week. It was a lot of things: a final holiday, a chance to see the ocean one more time, to stay at a hotel I had admired for thirty years, and to ride in a plane for the last time (thanks WestJet, for the complimentary bump-up to the big seats).

Anyway, we left our hotel our first morning, and within five minutes, this happened. (And, to be clear, this was absolutely random. The reporter Adam Sawatzky spotted Will and I while we were walking by the ocean.)

They sent the story out on the CTV national story wire, so people across the country saw it, including a friend in Newfoundland.

Good thing I went when I did. On the last day of the trip, my breathing became very laboured. The first day home, I awoke to find I can no longer walk across a room without becoming completely winded. A trip upstairs requires five minutes of huffing and puffing on my bed. Some days are better than others but I am now living life as a true shut-in with a permanent cough and long stretches of immobility. I get to see what my 80s would have been like.

My life is veering between one terrible band and one great song: Air Supply vs. Aqualung. I never thought I would cheer for Air Supply.

vic4

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.

Sharp teeth

I watched HBO’s documenary on Jimmy Valvano, the colourful and successful U.S. college basketball coach. In 1993, two months before he died of cancer, he spoke at the ESPY sports awards. He described three things we should all do each day:

“You should laugh every day. Number two is think. You should spend some time in thought.  And number three is you should have your emotions moved to tears…. If you laugh, and you think, and you cry, that’s a full day. That’s a heck of a day.”

I definitely have the crying part down. I think every day, mostly while lying in bed. And I laugh, because life is funny, and some days even cancer is funny.  That’s why I started this blog; to show that cancer isn’t all sharp teeth and darkness.

But sometimes, cancer reminds me that the laughs are hard to come by, and probably temporary.

Last week, I was still waiting for a date to remove a tumour on my spine (seven weeks and counting). On Wednesday, my back pain returned, so I took morphine. On Thursday, I began to puke, as I sometimes do after morphine. Over the next 11 hours, I vomited 19 times. At day’s end, completely dehydrated, I began to spasm up and down my left side. My wife took me to hospital, where I was hydrated all night. They took a CT scan of my head, which revealed little (make your joke here).

My hope is that a sore back muscle required a painkiller which prompted a drug reaction that led to severe vomiting, that led to dehydration, which begat the spasms, who begat Noah, who begat Seth…

Or maybe I’m just full of tumours.

I feel like cancer is saying “I have ignored you, and allowed you your small daily victories, because I have so many other lives to destroy right now. But I have not forgotten you. My memory is long.”

Maybe cancer is a cat, and I am a bird on the ground.

That’s why I write. The more cancer scares me, the more I need to find the laughter. I need each day to be “a heck of a day.”

Doctors Without Quarters

Last week, I wrote that I am taking naturopathic supplements. I want to update you on the results.

I have grown two large breasts.

Kidding. If that were true, I wouldn’t have any spare time to write this blog.

As part of the treatment, my naturopath told me to take my morning temperature three days in a row. They were 95.5, 95.2, and 94.3. I know that normal is 98.6, give or take. My low temps seemed like a pretty big “take”.

My naturopath put it in a reassuring perspective.

“You have reptile blood.”

He was joking, but concerned.  He told me to get my thyroid checked.

I drove to the nearest medical lab for the blood work. The test was not covered by the provincial health plan. The cost was $53 and change, according to the slightly brusque receptionist. She said they take check or cash.

“You don’t take debit or visa?”

“No, we don’t have the machines,,” she said.

“Great,” I thought to myself. “They probably take the blood with leeches.”

“There is an ATM across the street,” she said. Luckily, I had three twenties.

” I’ll just see if we have change. Sometimes we don’t.” She disappeared into a back room, and then returned with six bucks. All in coins.

After a brief wait, she led me to a cubicle for the blood sampling. “So if you didn’t have any change,” I asked. “Does that mean I wouldn’t get any?”

“Oh, no, ” she said, a bit defensively. “I’d just have to go elsewhere in the building to find some.”

At that point, I laughed out loud. I once bought medicine in rural Uganda. The roads were unpaved and the people lived in shacks, but the pharmacist had change.

I rolled up my sleeve and waited for the nurse. That’s when the same woman returned, holding a needle. So, she’s a receptionist-slash-nurse. And I’m the smart-ass who mocked her workplace. And that’s the sharp object she is gong to insert into my arm. I imagined her repeatedly searching for a vein  — in vain.

In fact, the blood test went fine. The results are pending, but I learned a lesson. Just as you don’t criticize a waiter until after your food has arrived, you don’t heckle a med-lab worker until after they take the needle away.

Yours truly, The Lizard.

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 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.