Please Unload Here

Talk to me. Tell me your troubles. Is your cluttered, messy house making you mental? Do you fantasize about giving your nutso kids up for adoption? Is your job driving you bonkers?

Tell me everything. I can take it. I want to take it. Mike died of cancer two-and-a-half months ago but I’m still a half decent sounding board, a good friend (in my opinion), and a fantastic secret keeper. I also love bone-headed husband (and wife) tales.

Being the bereaved is lonely and isolating. You’ve lost your anchor, you become unmoored. But despite the radical change in your life, you’re also fundamentally the same person.

While I haven’t felt any friends pulling away from me—the opposite is true, actually—I wonder sometimes if people are holding back telling me their troubles and triumphs.

Hearing tales about happy lives filled with laughter and love lightens me. And as weird as it sounds, hearing stories about the big and small irritations of life makes me feel normal.

Perhaps friends fear sharing their struggles with the newly bereaved because think their problems are trivial in comparison.

It’s not a contest whose life is crappier or whose really rocks.

But if it were, I would definitely, definitely win (or at least place in the top three) in the crappiest life contest. Look it up—dead husband, single mom of young son and widow (uggh, that word) at 44 trumps bratty kids, irritating spouse and lousy boss any day.

And if you’re afraid to say the wrong thing remember this: no matter what you say, no words can hurt me more than I have already been hurt.

Case in point: A family friend, a devout Catholic with the best of intentions, told me he liked to think of Mike looking up at us. To be clear, he was joking about my dead, agnostic/atheist husband burning in hell. I had to laugh. Mike would be laughing too.

So feel free to unload on me because whatever, whatever you say, it will never be worse than that joker.

Grieving Pains

IMG_7497

 

Just recently, bumps, scratches and bruises have mysteriously appeared all over my body.

A quick inventory: On my left forearm I have an deep yellow, inch-and-a-half-long bruise. On the underside, I have an angry red scrape that curls around from front to back. On one palm, I have a wee boo boo. Further down, I have four pink slashes, in various states of healing, across my shin.

And yesterday, I slightly burned my right forearm accidentally blasting hot water instead of cold while  washing dishes.

Other than the singed forearm, I have absolutely no recollection of how I got these wounds. I don’t remember any fisticuffs in my recent past, or ever, really. I don’t think I’ve challenged anyone to a duel and don’t recall getting up in someone’s grill.

But since Mike died I am a one-woman wrecking crew. Unfortunately, my body is the demolition site.

I am more injury prone than my pre-K son. I run into walls, misjudge the width of door frames and walk into open cupboards with my face.

In the past, I have generally had control of all my faculties and all four limbs. I have never carried myself like a ballerina but I’m no lumbering galoot either.

Many bizarre things happen when your spouse dies, I am discovering. Along with your memory and day-to-day brain power, you lose a sense of your own body and the space you take up. Other than the obvious pain, and feeling like a dummy, it troubles me that I have become a klutz.

Turns out, I am a completely normal klutz. Clumsiness is directly related to stress, my social worker told me. At least I think it was her. My memory is shredded, along with the skin on my shin.

Even though I honestly and truly feel like I am doing quite well with this whole grief thing, my stress tank is full. And when your mind is whirling with every other little and big thing—settling the estate, raising a little man, and doing my nails, for example—there is simply no room for your body to naturally remember what to do and how to navigate through the world. While that’s not a scientific explanation for why I am suddenly Buster Keaton with bruises and a lot less funny, there’s some comfort understanding the method behind my body’s madness.

Like many stages in the grieving process, this too shall pass. Until then, I hope to retain all limbs.

The Making of a Widow

Monday, August 18, 2008  - Calgary, Alberta  Calgary Lawyer, and dual-U.S.-Canadian citizen, Gerald Chipeur in his office on Monday, August 18, 2008. Chipeur the former head of Republicans Abroad Canada displays a photo of himself and Senator John McCain. Chipeur has a long history representing right-of-centre political parties and groups (the Reform, the Alliance, the Conservatives, Focus on the Family, etc.) and is not unknown to U.S. conservative political circles.  Photo by CHRIS BOLIN for Macleans Magazine
(Photo by Chris Bolin)

 

It’s very weird being a widow at age 44. It’s even weirder when people refer to me as ‘a widow.’

For context, I would rather be called the dreaded ‘ma’am’ than ‘widow.’ The ladies out there will know the horror of first hearing themselves referred to as ‘ma’am.’ It is unsettling and icky. It’s as if you cross an invisible threshold into old age. Inside, you may feel like your 20-something self, but your actual, outside 3o-plus-plus self isn’t fooling anyone. That’s how ‘widow’ feels too. It stings.

The truth is I don’t feel 44 and I don’t feel like a widow. I feel married and 80-years-old. In the past four years, I have aged tremendously, both physically, emotionally and mentally. And in my mind, I am still married.

Mike has just been gone a little more than a month. All his clothes remain in the closet and his jackets still hang at the front door. Some mornings, I catch myself thinking he’ll be coming down the stairs to join me for coffee.

Cancer changed me. My hair is greyer, my waistline is thicker and I have permanent dark circles under my eyes. Add a perpetual lack of sleep and a lot less energy and I am a perfect shadow of my former self.

Emotionally, I am hollowed out. Cancer took so much from me, besides Mike. My spirit is heavier. I feel wiser and stronger, sure, but it came at a very big cost. I have depression. It is under control according to me, my doctor and my CancerCare therapist.

Mentally, I am impaired. My brain is mushy and if I didn’t know better, I’d think I had dementia. My  therapist assures me I am not losing my mind. It’s just temporarily misplaced. A year from now I won’t remember a stitch of what I am going through right now. Grief and trauma messes with minds. So, until my synapses start firing properly again, I write everything down. My day timer has become my diary and my to-do list. This blog becomes a record of my life. (Keep on reading, I promise lighter posts are coming soon.)

Even with all that, I try not to dwell on all the things cancer has tried to take away from Mike, Will and I.  In time, my spirit will be lighter, my mind will be sharper and I will be happy. Who knows, maybe love will find me again.

But please, please, until then, don’t call me ‘widow.’ Or ‘ma’am.’

Tell it like it is

We are so polite, as a society; so gosh-darned polite. Pardon the language.

We refer, in whispers, to someone’s alcoholism as their “condition.” An obese person is “unhealthy, but sturdy.”

I’ve noticed few people are willing to use the word “cancer” in front of me. They’re more likely to say  “How are things?” with a slight elongation of  the final word. “How are thiinnggs?” Or “How are (pause here) you (or here) doing with (definitely here) everything?” Everythiinngg.

I wouldn’t mind a refreshing “I thought you were dead.” Or even “I’m sorry about your cancer and also wondering how long before Robin might be ‘dateable’ again”?

I realize people feel uncomfortable discussing a sensitive topic. Many times, I’ve mumbled “So, is it true that you…you plan to vote for the (pause here) current federal government? Like, for real and not ironically?”

I get it. Some things are too dark to talk about.

In my case, I have no problem being all Chatty-Cathy about what ails me. I have no reservations about using the C word (cancer, not Conservative).

What really surprises me is how many of my health care providers avoid these direct words and phrases. My own oncologist, normally as plain-spoken as can be, repeatedly refers to my “disease.” It might just be a matter of preference for him, but I’ve noticed most nurses and other cancer specialists do the same. In fact, I rarely hear the word “tumour.” It’s usually a “lesion” or a “mass.”

I like the word “tumour.” It’s concrete. I know what I’m dealing with. It makes the intruder sound small, and beatable. “Mass” sounds like a piece of carry-on luggage hiding inside of me.

And referring to my “disease” makes me sound… diseased.

I have cancer folks.

One wobbly step sideways….

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

 

Bucking the Bucket List

Number 8 on my bucket list: This lovely model from Home Depot. (photo: degrassi.wikia.com)
Number 8 on my bucket list: This lovely model from Home Depot (degrassi.wikia.com)

 

This weekend we bought the Globe and Mail because of an article headlined “The Good Death.” It chronicled a Canadian woman who spent the past year preparing for her death, which came this month. Hoping for insights that would spur me into some inspired final gesture, I read her story. And was disappointed.

Here was her  “good death”: she wrote her will, went on a final family holiday and maintained an upbeat attitude. Isn’t that exactly what most palliative patients do? Dying 101. I am criticizing the newspaper, not the woman. The Globe’s headline promised depths it never plumbed.

Ever since my diagnosis, I’ve been putting legal and financial affairs in order, writing letters for Will to read some day, and scouring the house for flaws to fix. As for leaving behind a heroic final legacy project, I’ve got nothing. Some nights I don’t have the energy to watch the shows I’ve PVRed.

I’m reminded of a conversation I had a year ago, while recuperating from lung surgery. My roommate was a 60ish gent with many health issues. His wife was a younger, somewhat impatient woman who reminded him “this was not what I signed up for.”

One day she peeked around the curtain and introduced herself. She was civil, but blunt and brassy, like the monthly sales leader at a realty office. She asked why I was in hospital. And then: “So Mike, do you have a bucket list? Something you really want to do?”

In fact, I do have a bucket list—dubbed the Fucket List—that describes small projects, big trips and classic books I want to savour before I go. The most important item on the list is to do more things with Will, since we’re likely to be short-changed some father-son time. And I told her that.

“Honestly, I just want to spend every moment I can with my son.”

She looked at me as if I said I didn’t eat food.

With her chin in her hand, she said “Hmmph.”

I guess I should have said “I’d like to swim with dolphins while skydiving and learning a second language.”

I think she would have understood that answer, but it’s a lie. I would much rather teach my son how to skip a flat rock on a lake.

While the Globe oversold its story, the woman in the article had it right.

A good death is much like a good life. It doesn’t have to be a huge production.

 

Why me? Why not them?

One phrase forbidden in our home is “It’s so unfair.” Of course cancer is unfair, but saying that aloud is self-pitying and likely invokes bad kharma. There’s nothing fair about cancer. Short of smoking or using your microwave to make a roast, there’s not much people do that invites this disease.

That said, I am granting myself a one-day exception. Today, I am asking:  “Why me? Why not one of them?”

Here are ten people more deserving of cancer.

10) That guy who talks on his cell phone LOUDER than in his normal voice. Wouldn’t it make more sense to lower his voice during a private conversation? If there’s any justice, he will catch cancer from his phone.

9) Anne Hathaway. Everyone loved her, and then everyone hated her. I don’t know why, since she seems really nice, but I’ll go along.

8) Movie talkers. Every one. Cancer of the tongue. When their doctor enters the hospital room for the first time, they can whisper “Who’s this guy?  Have we seen him before?”

7) Vladimir Putin. Because he’s lived a good, full life, and yet it still seems like there’s so much more he wants to accomplish. I know this one seems really unfair, but that’s cancer.

6) People who generalize. All of them.

5) Hitler as a baby.

4) Anne Hathaway as a baby.

3) The world’s oldest living person. I mean, come on!

2) A mean blind person’s seeing eye dog.

1) Former leaders of the Khmer Rouge who talk in movie theatres.

And that’s it! If they can’t get cancer, maybe a really bad toothache or dial-up internet.

Thank You MJ

egg by robin summerfield

Thank You, Michael Jordan. Thank you for that day in the 1980s when you showed up on court without your thinning pelt of barely-there hair.

Instead, you gleamed, the court lights reflecting off your smooth dome, like a halo. Your sweat even looked regal.

Gone were the days of Fudd-like comb overs, as practiced by every balding NHL player n the 1970s. Instead, here was a new, unashamed look. This was bald, and it was beautiful. From that moment on, men actually shaved away that which they once tried so hard to hold on to. Michael Jordan made it cool to be bald.

(Mind you, he owed me one. When I was a toddler, I often dunked from the foul line, sometimes with my arm tied behind another kid’s back. Years later, Jordan stole this move and made it cool. You’re welcome.)

Jordan’s smooth melon has been a comfort to a generation of male chemotherapy patients like myself.

Similar thanks go to Patrick Stewart, the most authoritative, charismatic bald leader since Mussolini. And Bruce Willis, who proved that even without hair, you can be attractive. If you’re funny, rich and muscular with chiselled features.

These are the men who influenced modern tastes, but let’s not forget the pioneers—the guys who first braved the sting of a cool breeze on a smooth scalp. The Hall of Fame: Yul Brynner, the Silver Surfer, Caspar, Mr. Peanut, and the little loser who never quite pulled it off: Charlie Brown.

Together, this brave, shiny army made it cool to be bald. Now, if only the Evil Queen from Snow White had done the same for gnarled cracked fingernails….

Chemocide

Chemotherapy is the ultimate frenemy. One day it hangs out with you at the mall. The next day it tells your friends you’re a bitch. It can save your life, but it will make you so very sick.

I was initially on chemo for 12 months and then off it for 13 months. Then new tumours appeared, and I began a second course in August, 2013. That’s 19 months of chemo, or about 24 rounds and counting. The drugs in question are ifosfamide and doxorubicin.

Here is a list of all the side-efffects I have experienced, in the rough order that I encountered them. Some were temporary; some appear after every round.

Fatigue: I had an infant son, so this was nothing new.

Nausea: Not as bad as you think, thanks to six different pills.

Infertility: That one hurt.

Hair loss, head: For a few terrible days, I became one of those knobs who wears a fedora.

Sore mouth: Gargling salt helped.

Abscessed tooth: With a depressed immunity system, a minor infection ballooned and I lost a molar. It made a crunching sound when the dentist pulled it from my jaw.

Dehydration: Which lead to…

Constipation: The worst. So bad that I have twice gone to Emergency. Both times, I walked out after a six-hour wait, because Emergency nurses prioritize the guy with the gunshot wound above the guy who can’t poop.

Change in taste: Even water tastes gross after chemo.

Infection: The port implanted in my chest to receive chemo injections became infected. I went septic. My doctor, who can be dryly funny, called it “a minor life-threatening incident.”

Hair loss, eyebrows: I officially looked “sick”.

Hair loss, eyelashes: My eyes compensated by secreting a protective goop overnight. Most mornings, I literally pull my crusty lids open.

Cracked, soft fingernails: This one costs me money, as I cannot pick up a dropped coin from a flat surface.

Neuropathy: Tingling “pins and needles” feet.

Hair loss, everywhere else: Great, it’s grade nine gym class all over again.

Mucositis: Inflamed esophagus caused heartburn and made every meal feel like I was swallowing rocks.

A blood clot in my leg: I spent a week on the couch, unable to move. Painful, but what really hurt was daytime television.

Low platelets: My nose bled like water. My doctor called this “a major life-threatening incident” that could have triggered a stroke. He reduced my chemo load by 20 per cent.

Rashes: Two types at once, on my face and body. Itchy!

Then there’s the most dangerous side-effects: the ongoing damage to my heart, kidneys and bone-marrow.

On the plus side, the periodic loss of appetite has me at my ideal weight!

Some side effects you work around. (Photo by robin summerfield.)
Some side effects you work around. (Photo by Mike O’Brien.)