The cancer crash course in priorities

Greeting card with two people saying "It appears someone invited a lot of old people to my high school reunion."A while back, I received an invitation to my 35th high school reunion. (Let’s just skip the number of years it’s been since I’ve attended high school and discuss the invitation itself, shall we?) I’ve been invited to prior reunions–I was in the graduating class, so by definition I’m on the list–but I’ve never gone.

I’m as curious as the next gal to see what’s happened to all those people I’ve had no contact with for 35 years. And yes, I take full responsibility for allowing those friendships to lapse. But I haven’t been motivated to allocate my time or funds to a reunion across the country. This year, I have the perfect excuse not to attend: I have leukemia. I no longer have the energy to spend a weekend reliving old times with people I haven’t seen in ages.

There’s another, more compelling reason for me not to go. It’s the bucket list I don’t have. I can’t see “attending high school reunion” anywhere near the top of my non-existent list. Now that I have cancer, I have given myself permission to focus my limited reserves on activities I would enjoy. Would I relish seeing old friends? Probably. I wonder what’s happened to them, and I wish them well. Still, I’d rather spend my limited time and energy with the people who are important to me now.

These reasons are of no matter since the timing of the event is problematic. The reunion falls in the middle of a potential vacation. l don’t envision interfering with this allocated time to attend a reunion. My health has interfered with so many of the best-laid vacation plans in recent years that this time away is especially precious to me.

I was in hospital when the first reunion email arrived so I hadn’t responded by the time I received the second prodding. This week, I informed the organizer I would not be coming. I didn’t mention the leukemia, I didn’t mention the difficulty planning that far ahead, I just said I’d be on a long-planned vacation. This was his response:

Hi Annie,

Sorry you can’t make it; hope to see you at the 40th!
John

[N.B.: Excellent use of a semi-colon, don’t you think?]

John’s response was unknowingly ironic given my current situation. I thanked him politely and that was that, but my inside voice was screaming to say more. Were I not wearing my ill-fitting socially appropriate hat, I’d have written back:

Dear John:

I’m afraid you’ll have to count me out for the 40th. I may well be dead by then, but if I’m not, I can assure you that the reunion will not be any higher on my bucket priority list 5 years hence than it is now. I wish you well and trust you’ll all have a better time without me. Really, I’d just be a downer. Imagine how quickly I’d kill any conversation by disclosing I have leukemia.

All the best,

Annie

I don’t know about you, but I feel better already.

The kindness of most strangers

We’ve been away for a few days on my Mother’s Day surprise weekend vacation. The weather has been grand, the food fantastic, and the company unequalled. I am so busy trying to look busy in my day-to-day life that it’s nice to have a breather every once in a while.

I find that when I’m away, I have time to notice things I might not be aware of were I at home and in my usual routine. I am more open to new experiences and I spend a lot of time thinking. Sometimes I even cry. Oh, don’t worry, dear readers, my tears were happy.

Let’s start with our bus ride. I used to take the bus daily to and from work, but my little car is my primary mode of transport now. When J. and I hopped on the bus to our destination in this unfamiliar city, we checked the fare first and made sure we had exact change for the driver. What we did not realize is that only coins and not bills were accepted on the bus. When the driver alerted us to this fact, he could have kicked us off the bus to get change, but he didn’t. Instead, he told us to make sure we had what we needed for the way back. He really didn’t have to do that. Yes, I teared up a little.

After a bit of wandering, it was time to stop for a quick sandwich. We entered the small cafe soon after an older woman who was clean but very, very thin. She obviously had mental health issues. This woman was asking questions about the options but hung back to allow us time to buy our lunch. Then she proceeded to buy a sandwich and some pastries, eating a large portion with gusto and packing the rest to go. Both girls behind the counter were very kind and patient with her, even though she was different. Of course that made me cry.

After lunch, we headed to a street festival. There was a young fellow dressed in a toga who was handing out pamphlets. (He worked at a local medical marijuana dispensary.) Toga Boy spoke at length with the young people beside us–we overheard he had a shoulder injury–and then approached the young people, and even one woman about our age, on our other side. He ignored us.

I was shocked and dismayed and hurt by his behaviour. (I can’t speak for J.) What was this fellow thinking, ignoring the old people? First of all, we probably have more disposable income than the young’uns, and I can assure you we have more aches and pains than all those flip-flop short-shorts-wearing pipsqueaks. That day, I happened to be nursing a nagging shoulder ache and a sore back from a recent gardening mishap, and my antibiotics were making me nauseous. Heck, I’ve got leukemia. I may not experience pain, but I deserve an escape from my reality, don’t I? Toga Boy’s passing us by didn’t make me cry, though, it made me angry. We didn’t judge him for being so out of style, did we?

Pug sitting on Roman column in a toga

 

The lost art of walking to school

We live in an inner-city neighbourhood a short jaunt from downtown. The local public school is just down the street. Each morning I see parents walking their children to school.

One girl, who is maybe 9 or 10 years old, is old enough to walk on her own. Schoolgirl passes our house on her way to school 15 minutes before the morning bell, and again 15 minutes after school ends, on her way home. I can count on seeing her Monday to Friday without fail, if I happen to be looking out my front window. Schoolgirl’s outfit is always appropriate for the weather, and she is so slight I wonder how she manages her heavy backpack.

There is one more thing I’ve noticed about Schoolgirl: she is always walking alone. I never see her walking with a sibling or a friend. I’ve sometimes wondered whether she’s lonely–I can’t ask her–but hope that she has friends who, for whatever reason, don’t trek home with her after school.

Yesterday Jelly and I were leaving the house as Schoolgirl was heading home. Upon seeing her, I realized for the first time that one of her arms ends just below her elbow, so she has only one hand. I don’t know if she ever wears a prosthesis, but yesterday, in her short-sleeved shirt, her rounded stump was visible.

Maybe I’d never noticed because I’ve most often seen her in long sleeves or a jacket. Or maybe I hadn’t noticed because I hadn’t looked carefully enough. Yesterday I was taken aback when I realized part of her arm was missing. (I hope my surprise didn’t show on my face.) I greeted her and she responded in kind.

Indian decorative pink box with little mirrorsAs she passed, I noticed she was carrying a beautiful little mirrored box in her hand. I commented on it and asked her about it. She moved the box to the crook of her elbow, opened the top with her hand, and showed me the odds and ends inside. She was bringing it home because school would soon be out for the summer. I thanked her for stopping to show me and she continued on her way.

Schoolgirl seemed like a perfectly content young girl, but I assumed, rightly or wrongly, that her life must be hard. Do the kids make fun of her for being different? (Kids can be mean, especially as they approach adolescence.) Has she had to learn to use her non-dominant hand to do many of the things that come easily to most people, like putting toothpaste onto the end of her toothbrush, throwing a ball, or tying her shoes? Imagine how much harder it would be to type with one hand.

The last thing Schoolgirl needs is my pity, though. I can’t assume her life is hard. Having one hand may be all she knows, and I can hope she has learned to work around her difference from an early age. I pray that people treat her with the kindness and respect that she deserves. I’d say she is brave, yet she has no choice but to adapt to her reality. As do we all.

Courage quote: Courage does not always roar. Sometimes it is the quiet voice at the end of the day saying "I will try again tomorrow."

Would you be my Winnie the Pooh?

Winnie the Pooh standing with a smile on his face, hands by his mouth

[Warning: You may never look at this sweet childhood character the same way after reading this post.]

We think of Winnie the Pooh as sweet, naive, and loyal to his friends. And so I find myself in need of a Pooh in my life. I’m seeking a small donation, one of little value to you, something you would normally flush down the toilet.

Before you dump this post in disgust, hear me out. Recall I’ve been a little off lately, and I’ve undergone a few tests recently to figure out what was wrong. Dr. Foie Gras was expecting to find nothing, only because he is as yet unfamiliar with my consistently anomalous test results.

Turns out all that kefir chugging was for naught: I was diagnosed with C. difficile, an infection common among recently hospitalized immunocompromised patients who’ve been on wide-spectrum antibiotics. I was starting to wonder if something might be wrong with my beloved gut flora but it didn’t occur to me to seek medical attention. I figured I’d just wait until I saw the doctor. Will I never learn?

Both Dr. F.G. and Dr. Family called me with the not-so-surprising results, and onto antibiotics I went. These pills aren’t supposed to be as toxic as the ones that led to the infection in the first place, but they do have the unfortunate potential side effect of…wait for it…the runs. As if I haven’t been rushing to the station enough lately. Thanks a lot, medication. In fact, all I’ve noticed so far is the persistent taste of freshly chewed nails and a much happier gut.

One bout of C. diff may increase my likelihood of getting another, and certain strains of this infection are antibiotic resistant. That’s where you come in. Turns out the newest and most effective treatment for recurrent C. diff is a fecal transplant. It’s not really the poo that does the trick but the healthy gut bacteria within it. Yes, patients have been miraculously cured of their GI ills when someone else’s poo is inserted through one end or the other.

Researchers are even working on “crapsules”. (I’d love to take credit, but I stole that term from this very funny New Yorker article on the subject. Take a look and you’ll understand my reference to Winnie the Pooh.) These pills will have a thick outer coating that will not dissolve in the mouth. Actually, even I, a brave unflavoured-kefir guzzler, may have a little trouble choking this cure-all down, but I’ll do anything for health. It would certainly help if I didn’t have to taste it.

And so, dear friends, do not be surprised if one day I ask to borrow your excrement. “Borrow” is the wrong word, since I won’t return it. I’ll be asking out of faith in your healthy gut bacteria, so consider the request a compliment. Also, you could potentially save my life. I’m giving you a heads up so you can acclimatize yourself to the idea.

If you’re too squeamish, thankfully a dear dog-loving friend has already stepped up. She said: “I don’t mind picking up my dogs’ poop, so for sure no issues with collecting my own.” Now that’s a true friend.

 

 

Our True North strong and free is making progress

Cupcake cake with icing in shape of Canadian flag

Oh Canada!

Did you know we recently changed the lyrics to our national anthem to make the song more gender neutral? Way to go, parliament!

Then the Canadian Red Cross shortened the blood-donation prohibition period for men who have sex with men from 5 years celibacy to 1 year, which is on par with the U.S. Zero years would be even better but it’s a step in the right direction.

As if that weren’t enough, Canada’s assisted dying legislation passed last week. Soon dying people the world over will be flocking to Canada for their lethal injections. Think of the potential financial boon from medical tourists.

This type of legislation cannot be easy to write. How can one ruling address everyone’s needs? By “everyone”, I am referring to people with chronic, debilitating medical conditions (e.g., severe chronic pain), those with chronic, progressive, terminal ailments (e.g., ALS), those with untreatable or too-far-gone-to-be-treated cancers, even those with psychiatric conditions whose quality of life is grossly impaired. No wonder there was considerable dissent over this bill.

In (not just) my opinion, the legislation as written fell short. As it stands, the ruling applies only to people whose death is reasonably foreseeable and who are able to give consent, thereby excluding all people who are suffering from irremediable debilitating conditions, e.g., intense chronic pain or serious mental illness. The government felt the legislation as written would protect the vulnerable, but in the process many people who may want access to medically supervised death will not have it despite the new law.

I don’t want to get stuck in this quagmire of a ruling if my quality of life tanks. Since I don’t expect changes to the legislation overnight, I’ve decided on a different approach to dying: I will drop dead. That’s right, I’ll have a heart attack or a stroke. My proneness to clotting may give me an advantage here. Or maybe one day I just won’t wake up, even when my four-legged furry alarm goes off.

But, perfectionist that I am, I’ll do my best to complete the job I started; I won’t incur brain damage that leaves me stuck in hospital indefinitely. If that happens, the current legislation will be of no help because my death may not be imminent. Even if I’m expected to die in the near future, the legislation won’t apply because I won’t have the mental capacity to provide consent.

I refuse to waste away in limbo land. And so, my dear friends, if I somehow fail to drop dead despite my best intentions, and no doctor is willing to do the deed, could one of you step up to the plate and finish me off? If I am unresponsive and hooked up to machines with no chance of improvement, I beseech you to place a pillow over my head and hold it there. I will not put up a fight. I may not be able to articulate it, yet I will be grateful because this is what I will have wanted. But I encourage you to do it under cover of darkness, lest you be charged with my murder.

You might want to sit down for this one, with your lukewarm latte.

Small dog nagging big dog, both sitting on antique blue couch

It’s a good thing you’ve got me, an esteemed psychologist, to keep you up to date on the latest medical research. Sure, I may be a behavioural scientist, but does that really matter?  I still have insights, however ill informed. There’s been so much cancer-relevant research in the news lately, I’m not sure where to start.

If you haven’t already heard, coffee doesn’t cause cancer, but it’s time to stop ordering your latte extra hot. Also, quit sending your soup back because it is not bubbling in your bowl. Turns out by ingesting hot liquids, you may be burning your esophagus, thereby increasing your risk of cancer. Let that coffee cool before you drink it so you can live a long and healthy life. I, for one, like it hot, so I have work to do. Just ask my microwave.

Now that you’ve reconsidered your coffee order, you might want to get married, especially if you’re a guy. A recent study of 60,000 blood cancer patients found that married men survive the longest following a cancer diagnosis. Marriage is associated with longevity for both genders, but especially for men. Single people, and single men in particular, are at higher risk of dying sooner following a diagnosis of cancer.

The researchers related these differences in longevity to the greater social supports that married people have. They suggested cancerous married men’s longevity is attributable to their wives’ nagging. Yes, “nagging” is the word the male researcher used. (Why do only hags nag and not gents? Beats me, but might there be a misogynistic insinuation here?)

I may not be a man, but I’m hopeful about my longevity nonetheless. First off, I cleverly tied the knot two months before I was diagnosed with cancer. Sure, I’m a woman but, because my spouse is too, I am married to someone who assumedly is biologically predisposed to nagging.

And count on me to be eminently naggable (spellcheck scoffed at that word). I leave clutter all around me–in the sink, on tables, on counters, in piles everywhere throughout the house–although I do manage to throw my dirty laundry in the hamper and to replace the cap on the toothpaste tube. If J. nags me, I’m sure I deserve it. And, since I’m a woman, I am biologically predisposed to nag her back, which can be fun sometimes. Consider ours an equal opportunity household when it comes to nagging.

But I doubt this study’s researchers were referring to the protective effects of nagging about uncapped toothpaste tubes. No, it turns out men might not even go to the doctor with concerns or follow through with cancer treatment without a wife to nag them to do so. No wonder that by the time single men seek medical attention, they’re in trouble.

I follow my treatment regimen to the letter–I’m too anxious not to–and I don’t need J. to nag me to see the doctor. But I’ll admit that sometimes she reassures me that I won’t be wasting the doctor’s time if I get checked out for a potentially deadly infection. Thanks to you, J., I’m staying alive, staying alive.

Pity the poor medical student who has me as a patient

Thanks for the thoughtful comments on my last post. They were insightful and informative. I do pray that this tragedy will bring change for the better.

This morning I was scheduled to see Dr. Foie Gras, but first I had the pleasure of meeting his medical student, Matt. The rookie made the rookie mistake of calling me “Mrs.”. After a quick lesson in how to address women in same-sex relationships, we proceeded.

I have been visiting this clinic for so many years that I have amassed two thick volumes of medical history, so I asked Matt if he had reviewed it all. Thankfully he giggled in the way that only a nervous grown man can, while his big brain furiously tried to determine whether I was serious.

Before he’d managed to warm his seat, I facilitated Matt’s assessment by offering my score on the Bristol Poop Scale, which was conveniently located on the office wall for my reference. We then discussed my transit time, which, by the way, does not refer to the speed of travelling by subway vs. by bus. In this context, transit time indicates how long it takes for food to move from one end of the alimentary canal to the other. Mine has been faster than a high-speed train of late.

Then Matt completed my physical exam, including pounding ruthlessly on my belly with his cold hands. With experience comes palpating finesse, I have determined. Matt’s frigid paws prompted a discussion of whether cold hands are preferable to warm, clammy ones. While J. and I debated this important matter, Matt’s inside voice screamed: “TMI! TMI!”

Then I traipsed off to the Fibroscan, a funky specialized ultrasound that measures fibrosis in the liver, thereby circumventing the need for an intrusive liver biopsy. Matt joined me for fun or education, I’m not sure which, but he refused to undergo the procedure in my stead. No matter, it was quick and less painful than those cold paws pounding my belly. Despite my current symptoms and elevated enzymes, I am normal, at least on the liver-fibrosis front. My recent fears of liver failure have been for naught.

The esteemed doctor joined us back in the office, with Matt not far behind. We learned that since we last saw him, Dr. F.G. has married and bought his first home. Ah, to be young and have a mortgage.

After reviewing Dr. F.G.’s stresses, including the huge transfer out of his savings and the many boxes he has left to pack, we discussed my health. The doctor is unbothered by my elevated liver enzymes, so I will be unbothered too. Sure. He sent me for testing to rule out a virus, since I am immunocompromised after all. He said he’d be surprised to find anything–no news is good news–but if he did, he might be able to treat it. Our business complete, off he went, with his underling in tow.

Let’s hope I was Matt’s only two-volume patient today, for his sake. I may have been first up, but he looked exhausted by the time I left.

Now, if you’ll excuse me, my fast-moving train is quickly approaching. Thankfully, I’ve never missed my stop.

Sleek white train in train station

#OrlandoStrong

As of this moment, 49 are dead and over 50 injured following a tragic shooting at an Orlando gay bar yesterday. Obama called it “an act of terror and an act of hate.” An act of terror because of the killer’s religious ideology, and an act of hate because it targeted the LGBTQ community in a space that should have been safe. I’m stuck on the “act of hate” part since I’m among the demographic this killer saw fit to kill. Anti-gay sentiments run rampant among the highly devout of many religions, including my own.

Here in Canada, our laws protecting sexual and gender minorities have come far, but we still have a ways to go. If our work were done, people wouldn’t still ask: “Why do students need gay-straight alliances at high schools? Or washrooms that are safe for all students, whatever their expressed gender? What’s the point of the annual pride parade? And why do gay people insist on marrying? Why can’t they just live together?”

J. and I are openly gay, yet we don’t hold hands walking down the street, we don’t kiss in public, and we don’t proclaim our marriage from the rooftops every time we go out. I can’t speak for J. but I am conscious of our difference and self-conscious in public because, despite the progress of anti-discrimination laws, tolerance and acceptance still abound.

A few years back, a fellow running for a seat in the Alberta legislature stated, with reference to gays and lesbians: “You can live the way you were born, and if you die the way you were born, then you will suffer the rest of eternity in the lake of fire, hell, a place of eternal suffering.” Thanks for that. More recently, and many years after gay marriage became legal in Canada, our Conservative party ditched their definition of marriage as between a man and a woman, thereby not endorsing gay marriage but not precluding it anymore either.

I will attend our local pride parade this year with J. and our friends, gay and straight. I will enjoy seeing “my people” out in droves. But even moreso, I will look forward to seeing the families, both gay couples with children and straight ones too. Those parents are teaching their children tolerance so that they will grow up in a world that is more open to difference.

Any life that is lost senselessly merits outrage and action. This killer happened to choose a gay bar, but he could have gone to a bustling cafe, a tourist resort, an office building, or a crowded subway station. He could have hunted down university students or grocery shoppers. But he didn’t.

It’s trite to say that good will come from this tragedy, but I can only hope. The outpouring of support for the LGBTQ community has been tremendous, not to mention all those who have stepped up to donate blood to the injured. We can’t forget the good in people at a time like this.

My dog is more beautiful than your honour student, and I have proofs.

Basset with wreath of flowers around her neck, tongue sticking outAs a psychologist who has performed many cognitive assessments over the years, I know what intelligence is. I can tell you with assurance, then, that Jelly is not the sharpest tack in the box, even without formally assessing her. I’ve provided many examples of her slow learning in the past, including, for example, her persistent awakening for breakfast a full hour before we feed her.

She does have her sharper moments, though. Imagine my delight yesterday when I caught her on our new bed. She somehow realized that, at 5 inches lower, she can easily manage the jump. I praised her and sent a photo to J. rather than yelling at her to get down, as I should have. I’m not very bright either.

Jelly may lack smarts, but she is lovable and she is adorable. I’m sure you’ll agree as I share a few shots from a recent professional photography session. Yes, we had portraits taken of our beauty queen. Sounds out of character, doesn’t it? Well, it was for a good cause.

A few weeks ago, J. spent the evening emaiing back and forth with a mystery correspondent. She refused to tell me who it was, so I got grumpy and pouted like any childish adult would. Eventually the exchange ended, although my pouting did not, and we got ready to call it a night.

Before we tucked her in, Jelly needed her pre-sleep piddle. J. beckoned her: “C’mon Miss October, you have to go out.” Miss October? What? Turns out J. had been participating in a silent-auction bidding war for a spot in next year’s Calgary Basset Rescue Society calendar. Thanks to J.’s efforts, Jelly was crowned Miss October, in honour of my birthday.

Basset with tutu and flowers around her neckAnd so it came to pass that the talented pet photographer, Nayla Chamoun, and her lighting specialist (her lovely husband Fadi), volunteered their time and services for Jelly’s photo shoot last weekend. Nayla brought the seasonal wardrobe, including a custom-made tutu and an autumnal wreath of flowers. Then she lowered herself to Jelly’s vertically challenged level to take some beautiful shots of our little princess. In one photo, Jelly bears a remarkable resemblance to a turkey, as I’m sure you’ll agree.

Basset hound looking in the distance with wreath of flowers around her headBut my favourite is the one on the right, in which Jelly appears pensive, perhaps even wistful. She’s staring off into the distance. I like to imagine she’s contemplating her full life, her doting parents, and her gratitude that we opened our home to her. As if. Jelly was far from wistful at that moment; rather, she was coveting the treat in J.’s hand. Had Nayla waited a second longer to take the shot, drool would have started dripping from the corner of Jelly’s mouth.

What a perfect gift. I am the gal who wants for nothing but fun times and family togetherness and opportunities to meet wonderful people. Oh, and for the world to see our beautiful furry child. All those things I received.

When I asked Nayla if I might share a few of her beautiful photos in this post, she said she would be honoured. The honour is all mine, Nayla.

P.S. Be sure to check out Nayla’s website here. Trust me when I tell you she is truly gifted.

The healing power of the homemade samosa

Four samosas with garnishes on a white plateI received a call from Dr. Foie Gras’s office last week scheduling an appointment for June 15. I’m imagining my repeat blood work last Monday revealed ongoing liver-enzyme elevations, and that Dr. Blood initiated the referral, but someone forgot to inform me. I’ve surprisingly taken it all in stride. Anxious Annie is nowhere to be found. What’s up with that?

Here’s what’s up: I’ve lived with a wonky liver for many years now, so I can tell when my liver ain’t happy. I get tired, and I am pretty wiped of late, but it’s manageable. More importantly, I lose my appetite. I know we’ve discussed this before but it bears repeating here. I cannot fathom putting any food into my mouth. J. begs me to eat, but my meals become uncharacteristically microscopic. A piece of toast here, a bowl of broth there. You’ve had a fever or a stomach bug at some point. This is no different.

My loss of appetite was at its worst soon after my leukemia diagnosis, and especially following my discharge from the ICU. For a good two months plus, I could not fathom food. No wonder I lost 30 lbs.

I also know from experience what it’s like when my appetite returns, as I’m sure you do too. I find I don’t want to eat a large pizza with fries on the side right away; I want bland food to start. Plain rice, toast with jam, maybe apple juice or the odd scrambled egg. Anything else is unfathomable.

When I stop eating, J.’s intake drops too. During my prolonged hospitalization, friends generously plied J. with food. One friend dropped off an abundant supply of her mother-in-law’s delectable homemade samosas. There were so many that J. had barely made a dent in them by the time I was discharged. As J. was desperately trying to find things I might eat–I had graduated to potato perogies by this point–she ran some options by me, each of which I nixed. Then, as a lark, she mentioned the samosas. I paused rather than immediately saying “Are you crazy?”, as she expected. Despite my limited diet, a samosa sounded oddly appealing. Samosas are just perogies in evening wear, aren’t they? Normally something fried and spicy if delicious would be out of the question but, to J,’s surprise, I gave one a try.

I have never tasted such a good samosa in my life. I recall eating many of these delicious bundles over the following weeks as my appetite slowly returned. I was starkly underweight back then, and J. was thrilled I was eating something, anything. Word got back to our friend’s mother-in-law, who has donated additional samosas to my health cause ever since. In fact, we just picked up another generous bagful a few days ago.

It must be an omen that this latest samosa stash has arrived while my liver is acting up. This fortuitous timing sparked an idea: I’ll eat one prior to my next blood work and see if the results improve. Even better, I’ll snarf one down right before my appointment with Dr. Foie Gras, for good luck. Forget Jewish penicillin, I’m going for Indian this time. Desperate times call for delicious measures.