I Found a Lump; and other Dreaded Fears

I found a lump in my breast.

I discovered my invader while soaping in the shower six weeks ago.

It was the size of a pea and buried behind my left nipple.

My mind instantly went to the dark side.

I have cancer. I will die. My son will be an orphan. 

Losing a spouse fundamentally shifts your universe. And you become a little paranoid, I have discovered.

On May 24 at 9:30 p.m., I became a single mom. My five-year-old has one parent. And I have only one child. There’s no spare parent if something happens to me. And there’s no spare child if something happens to him.

Mike was diagnosed in June 2011. From that moment on I worried about him and put most every other concern on the back burner. I worried for four years. He died and I stopped worrying. . .about him.

Now it was all about my son and I. Our survival is now a must.

And my paranoia has gone super sonic. The lump didn’t help.

This vicious, life-abreviating alien has been sent to kill me and destroy my son’s life.

I raced to my doctor. She had a feel and ordered a mammogram. In the meantime, she told me not to worry, forget about it for now, and not to touch my breast again. I tried to follow orders.

So I waited for my appointment. Weeks later I sat in the waiting room surrounded by women facing the same fears I had, I’m sure. And that’s when I started to panic.

After my mammogram, I was pulled into a secondary room for an ultrasound. More panic. The doctor came in and took an inside look with her wand. She found nothing.

“This is healthy breast tissue,” she said.

“I’m sorry. I know I’m being paranoid about all of this but my husband just died of cancer,” I replied.

And then she gave me some advice that applies to everyone, regardless of your connection to cancer.

“It’s not being paranoid if you’re taking care of your health.”

It’s great advice, sure, but I don’t know how long I can follow it.

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Physician, ‘heel’ thyself

I’ve experienced the best and worst of medical bedside manner. Four years ago, a Winnipeg physician told me in a straightforward yet reassuring conversation that I had cancer. Months later,  a Toronto doctor proclaimed there “was no real point” in treating my disease because it would just keep returning. (Hey Doc, I’m still here.)

And I wondered what might be the worst way to learn one has cancer……

DOCTOR: Hi  Mike. Let’s get right to it.  After all, you’re sitting here, and I know there’s only one thing you want to know. Is it cancer or is it not? That reminds me of a long story about a previous patient. See, the fellow —

MIKE: Doctor, please!

DOCTOR: What?

MIKE: The test results?

DOCTOR: Right! Now, when I deliver good or bad news, I add little personal touches to balance the impact. Like, if it’s good news, I walk in with a stern, pitying look, so they’re extra relieved when I tell them. But if it’s bad news, I enter smiling, wearing something cheery.

MIKE: You’re wearing a clown suit.

DOCTOR: Yes. Yes I am. So here’s the diagnosis, straight and to the point. Mike, do you ever worry you haven’t saved enough money for retirement?

MIKE: Not really.

DOCTOR: Worry no more. Because I can say, without doubt, you have enough money for the rest of your life.

MIKE: I have about 800 bucks.

DOCTOR: You have enough money for the rest of your life.

MIKE: I don’t follow you.

DOCTOR: True. In fact, I’ll probably follow you by a good thirty years.

MIKE: What kind of cancer is it?

DOCTOR: Oh it’s that new kind that everybody wants. Heh, just kidding.

MIKE: I mean, where is it?

DOCTOR:  Look at this MRI scan of your torso. Do you see these three tiny white spots?

MIKE: Yes.

DOCTOR: It’s not there.

MIKE: So it’s —

DOCTOR: Everywhere else.

MIKE: (Long pause) How much longer do I have?

DOCTOR: I hate to make predictions. Let’s just say, when you use a parking meter, buy the time in half-hour periods.

((HONK))

MIKE: What was that?

DOCTOR: I squeezed the clown nose. Feel better?

MIKE: I don’t think you’re a very good doctor.

DOCTOR: Ah, we call that ‘denial.’

I’m still here!

More or less. About 30 pounds less, although I can’t bring myself to look at a weight scale. I caught a view of myself in the mirror the other day and was shocked. I have the same chest as Audrey Hepburn.

I figured out why super-models look so unhappy all the time. I assumed they were hungry, but it turns out their butts hurt. When your ass is this skinny, it’s good for about five minutes in any position before the chair surface starts reshaping the bone.

I could not have imagined how much the terminal-palliative diagnosis would alter my thinking. Four days after learning I was palliative, I qualified for the home oxygen program. I walk around with two small tubes up my nose followed by 50 feet of plastic tubing following me. This may be normal in Marin County but not on Hill Street, Winnipeg.

My self-image has turned quite odd. I imagine myself connected by tubing to everyone who enters the house. I almost see the tubes that connect us, one to another. Sometimes, the tubing is knit yarn. I imagine it covers each person, head to toe. I am not making this up. These feelings have faded a bit the past week, which is probably good.

After being physically, mentally and emotionally pushed around, I’m amazed at how all this strangeness settles into the new normalcy.I have become used to tubing, resting, and napping. I feel bad about how much Robin is doing around the house. I’m reading, writing, wrapping up legal stuff and watching Survivor. (To find out who survives the 40 days, I’ll have to too.)

I’m trying to live everyday, instead of just waiting, waiting…

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.

The Bearable Lightness of Being

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. 

Life on the fringe

Winnipeg’s Fringe Theatre Festival is wrapping up and cancer is a big hit here. One play is called This Is Cancer, a funny personification of the disease by a Toronto actor. I saw it three years ago.

This year, I took in Expiration Date, by Minnesota’s Candy Simmons. She plays Lucille Barker, a young woman who learns she has late stage cancer and mere months to live. Simmons based her play on interviews with several terminally ill patients.

I was struck by how one disease produces so many different experiences. Simmons’ character wrestles with several issues I have not yet had to face, and likely won’t. She initially keeps her grim prognosis to herself, and struggles to tell her brother. In my case, I told everyone, right away. I’m a sharer. I told cashiers at drive-thru windows.

Lucille contemplates whether she should try chemo; I never pondered this for a minute. I’ve got a boy to raise. She worries she hasn’t experienced enough living. I am older, I’ve travelled, and I’ve had lots of adventures. Not seeing Bali isn’t a big regret. On the other hand, my fear of not seeing Will grow up is overwhelming.

In the funniest scene, Lucille encounters a flustered funeral director while planning her own send-off. It made me wonder if I’m foolish for not making any such plans yet (other than pondering the set list, and so far settling on the Theme From Shaft).

I have spent three years “getting ready” and yet I found little common ground between my experience and Lucille’s (this is not a criticism; it’s a good production).

Despite many shared moments amongst cancer patients, the larger journey is unique. There aren’t five stages of grief, there are five hundred.

We cancerous folk begin in the same place, usually a doctor’s office. Sadly, we often end up in the same place too. The route between those points is variable; it traverses a wide, wild country with back roads and unmarked trails.

 Candy Simmons’ Expiration Date moves to the Edmonton International Fringe Festival, Aug. 14-24. 

Duct cleaning

 

I’ve been so busy lately I haven’t kept up with my crying.

I haven’t taken a moment to make my scrunched-up crying face, the one with the heaving chest and quivering shoulders. The one where it looks like I’m having a baby in reverse.

I’ve always been a big crier. Terms of Endearment sent me out of the theatre with a wet face and an embarrassed date. To Kill A Mockingbird had the same effect. It’s a wonder I never cried about running out of dates.

Before my diagnosis, I cried at manipulative, uplifting commercials for things like Mother’s Day and pet insurance. Since my diagnosis, I cry at commercials for more competitive monthly data plans.

For obvious reasons, nothing makes me tear up like a father-son moment on TV. If a curly-headed six year old throws a wobbly football into the air, I’m weeping before his khaki-wearing dad can catch it. In Game of Thrones, when Tyrion fired an arrow into his father, who was sitting on the crapper, I thought they made a beautiful connection. It reminded me of a similar moment years earlier on the Cosby Show.

I often cry after playing with Will. We start out laughing, and just when the moment couldn’t get any better, I wonder how many of these we have left, and have to turn my reddening face away from him.

That’s okay.

Few things feel as cleansing as a short, sharp cry. Like a deep tissue massage, it hurts, and then feels good. I like the sharp ache that starts in my chest, rises warm into my face and leaves a prickly sensation in my nose. And then the sadness slips away, as if shaken in an emotional etch-a-sketch. I’m often left with a better perspective on life, death and data plans.

I recommend a good cry to anyone. You don’t have to have Stage 4 cancer (but it helps). Acknowledge your sadness; you may not be that sad after all.

One wobbly step sideways….

Need these in a 36″ waist, cotton- spandex blend. (photo: whereibuyit.com)

 

Two weeks ago I began to experience vertigo. It wasn’t as interesting as in the Hitchcock movie. There was no murder and no Kim Novak — just a lot of swaying from side to side.

On Monday, it was worse.  I walked the dog around the block and I’m sure my neighbours concluded I’m a drunk.

Luckily, I was scheduled to enter hospital Tuesday for three days of chemo. I told them about it. They said, don’t worry, it’s likely an inner ear infection, not a brain tumour. They ran a CT scan on my head.

Tumours. Two of them, both small, sitting on the back of my brain, causing no ill effects at this point. (The vertigo was completely unrelated, which leaves me wondering what cosmic force gave me the spins in order to find two tumours no one knew existed.)

My oncologist called me with the news and did his best to put my vandalized mind to rest. These are tiny, very treatable, and “a minor setback.”  He told me I am an excellent candidate for a gamma knife procedure. That’s a newish technology that burns tumours with focused beams of radiation, without opening up the skull.

It sounded good, but later that evening I was struck by a frightening epiphany. Gamma radiation. Gamma rays? I know what that means. I’ve read the literature and I’m well aware of the risks.

I could transform into a hulking green rage monster with super-strength and an affinity for purple pants. I might turn into an elasticized man, a flaming torch or a walking pile of orange rocks. I could end up an invisible girl.

Where would I even find a pair of purple pants? I guess I could go clothes-shopping with my mother; she always found me clothes I wouldn’t be caught dead in.

Maybe my powers would be less jarring. Given the advances in medical science, they may have gained some control over the side-effects. I could, for example, gain semi-super-hearing, allowing me to listen in on conversations a full 20 feet away. (Maybe not the whole conversation, but enough to glean the gist of it.) Maybe I’ll be able to predict which elevator door will open first.

And then, how would I use those powers to benefit mankind?

With mediocre power comes a sliver of responsibility.

All right gamma rays, do your worst. Or best. And to the surgeon, please, don’t drop the gamma knife and cut my brain in half.

And thank goodness for vertigo. Now please make it go away.

 

My cancer, part III (in a trilogy)

Post-diagnosis, pre-chemo, still coiffed.

For a few weeks in June of 2011, there was a lovely moment each morning when I awoke, stretched and thought about coffee. That all took about two seconds. Then my new reality covered me like a heavy blanket. Back then, those two seconds were the highlight of every day. It didn’t last.

About a month after diagnosis, Robin called me in tears. Our original oncologist had just called to report the biopsy results, showing probable synovial sarcoma, as suspected. She also used a phrase we hadn’t heard before. Stage four.

“What happened to stage two and three?” I asked, dismayed that there were still ways for the news to get worse.

When you google synovial sarcoma, you will read that stage one is very treatable; a surgical snip, perhaps followed by a cleansing dose of radiation. It sounds like a spa weekend. But stage four triggers a different, near-unanimous prediction. The phrase I recall is: “The outcome is grim.”

Grim? That’s my word? That’s like pulling  “onomatopoeia” at the county spelling bee.
Website after website confirmed it. One went with “very grim”, lest hope linger. It could be a lyric from the worst musical ever: “Grim is the word, is the place, is the motion. Grim is the way we are feeling!” 

The main thing I learned from researching my disease on the internet was to stay off the internet. (I did google “celebrities who died from synovial cancer.” The best-known is Robert Urich, a handsome early ’80s actor who had his own crime-solving series.)

So that was Robin and I, back in the summer of 2011, searching for optimism in a coal mine. We wondered if an earlier diagnosis might have identified the cancer before it metastasized, but no amount of second-guessing could change that. My family doctor told me he was a general practitioner who might not recognize every cancer he encountered. I appreciated his candour; I just wished he had referred me months earlier, when I first reported the visible lump. We hugged it out, over the phone.

If I  don’t have time remaining to travel the world, write a screenplay, or watch my son grow up, then I definitely don’t have time for anger.