My recipe for the perfect nap

Woman napping on couch under blanket

Last week we went on the perfect cancerversary trip. I didn’t have to do anything but show up, we made use of every vacation minute to the fullest, we saw lots, ate well, and even had a beer on the patio (maybe that was J., but I enjoyed my teetotaller’s lemonade). Our frenetic pace unfortunately brought me back to leukemia reality: I have been napping daily since I got home.

I’ve had many years of practice now, and, not meaning to brag, I have an honorary Ph.D. in napping. In the past, I would often lay down, only to toss and turn and drag myself up a while later, not having slept but more tired and more frustrated than before. I can nap almost anytime, almost anywhere, and even if I know I only have a brief reprieve before I must again be up and at ’em. Despite my expertise, I do have several preconditions that bring my likelihood of napping success close to 100%.

The first necessity is absolute utter exhaustion. I have become a good judge of how tired I am at any particular time, even if I can’t rate my exhaustion on a 1-10 scale. If I can barely keep my eyes open, if one or more people tell me I look like a truck has run me over, if I can’t stop myself from yawning, I know I will fall asleep as soon as I allow myself to lay down.

Second, I need a very comfortable couch. It doesn’t have to be my couch, which is handy because it allows for some flexibility of napping location. (Warning: If you happen to have a comfortable couch, you may find me curled up on it when you least expect it.) “Why not a bed?” you ask. I can’t really explain that, except to confess I’m more likely to nap for too long if I allow myself the comfort of a pillow-top mattress.

Third, I need a blanket of some kind. If I am chilled, I will never be able to sleep. I need to be warm and cozy.

And last, I need background noise of some kind, preferably in the form of a trashy television show. Border Security was my show of choice for years, but being able to recite every oft-repeated episode by heart necessitated a change.

I have recently found a suitable substitute in Say Yes to the Dress. On this show, assuming you have never wasted your precious time watching (my time is far from precious), brides-to-be drag an entourage of family and friends to a fancy wedding dress store to choose their gown for their special day. There’s nothing like a roomful of people in utter disagreement about what a bride should wear. I’ve seen tears and anger and, sadly, meanness, and many brides leave without saying yes to a dress.

I have learned so much from this show, when I’ve been able to stay awake. Among other things, it has prepared me for a very special wedding I will be attending this evening. I’ll give you the complete rundown on Friday. Now I must nap, so I can be in good form for the celebration. I am so excited!!

A reminder that things happen in their own time

Vacations are good reminders of how lucky J. and I are. We have the means and the flexibility and the health, especially the health, to travel. Pack a few clothes and my pharmaceuticals, find someone to care for Jelly, and we’re out the door in no time.

As my 5th cancerversary celebration, this trip has special meaning. That J. surprised me isn’t saying much; I’m so oblivious that J. could plan anything without my knowing. My ignorance doesn’t make me any less grateful for her efforts, however. Her summer is absurdly busy–she married 9 couples last weekend alone–yet she managed to squeeze in a few days off somehow.

And so we find ourselves hanging out in another city, walking our socks off (such a strange expression, since shoes hold our socks in place), and enjoying being somewhere different. It wouldn’t really matter where we went or what we did; I’d be happy we acknowledged the milestone.

Packing for this trip was a breeze, at least to start. Sunscreen? Check. Walking shoes? Check. Personal pharmacy? Checks. But what to wear? I am temporarily wardrobe challenged, although you may resent my complaining about my shrinking from Large to Medium. I’m not complaining; I’m simply telling you I need a few clothes that fit.

Cancer killed my love of shopping long ago. I never want to overspend because whatever I buy today may not fit tomorrow. Still, I anticipated shopping success on this trip, so I left space in the suitcase for my purchases, and packed only three shirts for three days. I failed to factor in the possibility of a heat wave and the discomfort of a sweaty t-shirt. I also failed to consider that my search might fail.

Chopped chef with sweaty bald head preparing his dishTwo days passed, two hot and humid days, and my shirt inventory was almost depleted. Last night, after returning to our hotel, making dinner over a hot stove, the sweat dripping off me (I felt like a contestant on Chopped), I had two choices: I could shower or faint from heat stroke. I chose the former.

After the shower, I couldn’t put on the same wet t-shirt without causing a scene. J. suggested I wear my last shirt last night and then again today. Either that or try out the emperor’s new clothes, which would have caused an even better scene. Wearing the same shirt two hot days in a row would have to do.

After my shower, I went to get my last t-shirt from my suitcase, only to discover that I was smarter than I thought: I had brought a fourth shirt just in case, but I forgot I’d packed it. (Now do you understand how easy it would be for J. to pull off a surprise?) Of course the fourth t-shirt was my #grateful shirt. Do you even have to ask? And, yes, I was grateful to find it.

In time, I will outfit myself with a few new shirts that fit. I was reminded that not everything happens on my schedule. Until then, I will make do with voluminous shirts.

“Why no mention of pants?” you ask. For a long time now, I’ve known better than to throw out my skinny jeans. Life is full of surprises.

What kind of survivor are you?

TV Survivor logo

Is today really my 5th Cancerversary? I know, I can’t believe it myself. 5 years ago today I found out I had cancer, then I almost died, but I didn’t. I’m alive, I’m alive, still!

Come to think of it, is today the actual date? It depends on how you define the term. Should I make it the day that the astute on-call hematologist told me she thought I had CML, or her confirmation later that week with results of a bone-marrow biopsy? I’ve chosen the latter as the date of note. By the date CML was confirmed, I had overcome my overwhelming denial and was ready to accept the reality.

I wish I could be celebrating, like many others do, the date that cancer was eradicated from my body, whether through surgery and/or radiation and/or chemotherapy, but I don’t have that kind of cancer. I am celebrating 5 years of living with (or should I say, “not dying from”) cancer, which is a whole lot better than the alternative. With the wisdom and guidance of my stellar medical team, I am still here. Sure, I’d prefer to be rid of my leukemia altogether, but that’s not the CML way. Technically I may be in a remission of sorts, but I am not cured and, as far as I know, I never will be.

Five whole years of leukemia and I’m not dead yet. It begs the question, have I been pulling your leg all these years? Do I really have cancer? Yes, the doctors tell me I do. Remember, I am not a writer of fiction.

This is how I know I still have cancer: I hang out with other cancerous folks every 6 weeks of late. This more frequent cancer-centre visit schedule reflects both Dr. Blood and Dr. Blood Lite’s concerns about my goutiness and my weight loss. I trust I will be on a less frequent cancer-reminder schedule sometime soon.

Have I convinced you that I do have cancer, even though it’s not killing me, or at least not yet? Whatever, I believe strongly that a milestone like this should be celebrated. It’s an accomplishment of sorts, even if I didn’t make it happen.

J. asked me how I wanted to celebrate the day and, after giving me approximately 30 seconds to deliberate, she booked us a quick trip away. And today, when I have coffee with a few dear friends I don’t see often enough, I may order a small hot chocolate, but only to get my doctors off my back. Or maybe I won’t. I’m lactose intolerant.

I also celebrated by wearing my leukemia shirt to the gym. It subtly screams SURVIVOR on the back. A fellow yogi with whom I’ve exchanged pleasantries in the past asked me what kind of survivor I am, so I told her with undeserved pride. I think she was disappointed that I had not won that Survivor television show. Imagine me on a desert island fighting for my life. What if there’s no pharmacy? No blood lab? I’d be sunk.

Tonight I’ll be raising a glass of fizzy fruity soda from a fake champagne bottle. Don’t let that stop you from imbibing something stronger or, alternatively, eating cake. Together let’s toast 5 years of still living. L’chaim!

The luck of the draw

Toddler sitting on sidewalk with little puppy kissing his face

I love my PALS visits with Jelly. I get to go to new places and meet new people and watch them adore my dog. Of course I love to tell them funny stories about her, but I don’t go on and on about her because it’s not all about us, especially during these visits. I have to find other topics of conversation instead.

I’ve long accepted that I’m terrible at small talk. Getting-to-know-you conversations are hard for me in general. I was particularly stumped at a PALS outing last week.

We had volunteered to visit a special nursing home. The residents there are hard-to-place older folks who would not otherwise be accepted into seniors’ homes. Many are alcoholic and/or mentally ill, and many once lived on the street. The alcoholic residents are given controlled amounts of alcohol at regular intervals. Without access to alcohol, these people would likely continue to live in poverty on the streets. The residence’s goals are to reduce these people’s run ins with the police and their need for emergency health care.

I’ve been in many seniors’ homes with Jelly and this one was more run down than others I’ve seen. (Imagine the challenges gathering funding for a place like this.) So were the people there, many of whom were socializing in the common area when we arrived. Still, this special residence gives them a roof over their heads and three meals a day, access to laundry facilities, and on-site medical care. There are significant daily supports in place, so they don’t need to be trying to survive on the streets anymore.

I didn’t know what brought these folks to this residence and my asking them would have been inappropriate. Of course I wondered about their pasts, though. Sometimes their mental-health issues were apparent, but others simply appeared poor and downtrodden. I hope my discomfort wasn’t obvious, but I felt even more awkward than usual finding common ground for conversation.

I often fall back on one strategy when I have no idea what to say. On all our PALS outings, people can choose to visit with the dogs or not, so those that do attend are clearly dog lovers (or cat lovers who are willing to accept second best). Their interest in animals gives me an easy inroad: I ask them about their experiences with dogs. That breaks the ice, probably for me more than for them. People love to talk about their dogs–I can relate to that–even if they may be sad recalling better times in their lives.

On this visit, our dog conversations reminded me that our lives may not have been all that different at one point. These people weren’t born mentally ill, although they likely were harbouring bad genes that would reveal themselves later. They likely lived with family when they were younger, just like I did. But at some point, poverty or mental illness or addiction derailed their lives. I expect they’ve had bad luck, while somehow I did not. Life is truly unfair.

I’m glad this special residence can provide these folks a home. Everyone deserves at least that, no matter what.

Introducing Dr. Blood Lite

This one’s for you, Janet.

You may wonder who this Dr. Blood Lite is, and how I named him without consulting you first, my dear readers. This time I didn’t need your help, thanks to a comment on a previous doctor-naming post. In that comment, a beloved beer connoisseur, who would never imbibe the beer of the masses, came up with this perfect name.

If you haven’t yet put one and one together, Dr. Blood Lite is Dr. Blood’s locum for her sabbatical. He is a lovely young doctor and, since he’s been trained by Dr. Blood, I know he’s learned from the best. Dr. Blood had told us she had considered her replacement carefully, and she hit the jackpot. Dr. B.L. seems calm and kind and he even introduced himself using his first name. You know how I like to be on a first-name basis with my physicians. It gives me a false sense of collegiality.

Although I did not recognize the newbie, we had met once before when I was an inpatient on the hospital’s palliative unit. Do you recall that hospital stay, the one where the hematology unit was full so I ended up lodging with the dying people? I could not remember him but J. clearly recalled Dr. B.L.’s Edmonton Oilers lanyard. In fact, I envision her hijacking my future appointments to talk about McJesus. That Dr. B.L. could remember our brief encounter is a miracle on par with McJesus’s MVP performance last year.

Back to my health for a moment. Dr. B.L. told me that, if my blood work is to be believed, I am holding steady on all fronts. This is good news. There are no significant changes since last visit, which means I will stay on my current treatment plan.

My blood work did not explain my appetite loss, which was a relief. I had pretended I wasn’t worried about my disinterest in food, but I was lying, as you probably suspected. I may have a perfectly reasonable medication-related explanation for the pounds melting off me, but as a graduate of the School of Something Could Always Be Seriously Wrong, I’ve still wondered whether my liver might be tanking. As of today, I worry no more. My liver is a-okay.

Despite my apparent well-being, Dr. B.L. was alarmed by my rapid weight loss. So alarmed, in fact, that he said something that no doctor has ever said to me before: he told me to start eating more. He forbid me from losing any more weight and said he expects me to pack on a few pounds by the next time I see him. He even suggested ways I might increase my caloric intake.

My inside voice could not help but giggle in response to Dr. B.L.’s concern. I wanted to say, “Do you realize who you are talking to? I am a glutton! Cookie Monster is my doppelganger. Or is it Miss Piggy? Whatever, you’ve got me all wrong, doc.” Instead, I listened respectfully and told the doctor I would take his concerns under advisement. Yes, I used those words. And he smiled, just a little. I think we’re going to get along.

Now I must force feed myself some dinner. Doctor’s orders.

arm reaching table full of appetizers

With age comes wisdom, sometimes

Basset hound running behind greyhoundI am slowly coming to accept that I am not the young buckette (is that doe?) I once was. I had a crash course in recognizing my limitations when I got sick. Now I know that I won’t run any more marathons, climb any more mountains, or participate in any more aerobics classes that will cause me to break a sweat.

But every so often I forget. Occasionally I try to run a little bit and my body quickly reminds me to stop. I seem to be the last person leaving every yoga class I attend–I roll my mat and collect my things at a snail’s pace. Everything takes longer than it used to when I was youthful. I moved with vigour once, but now I’m slow as molasses. In fact, recently I gave up rushing altogether, and I must say I don’t miss it.

I’m not the only one who is aging. Jelly turned 7 last month, which means she is now  a doggy senior. Although she looked like a puppy until a year or two ago–even dogs want to believe they look younger than they are–even her little red eyelashes are now turning grey. I’ve noticed she’s never been asked for identification for a senior’s discount.

There are other signs of Jelly’s advancing age: she is more likely to amble than gambol when we visit the park. Still, we go there so she can venture as far as she wants that day and visiting with her four-legged friends. I do miss the days when she’d chase her peers over hill and dale, barking frantically as she brought up the rear, “Wait for me! Wait for me!”

Except for last Friday morning, when Jelly temporarily forgot that she too is no young buckette anymore. She met up with Kona, a lovely tall greyhound cross, who seemed intent on a running mate. Kona egged Jelly on persistently, resulting in an all-out no-holds-barred chase around the park. Kona was born to run. She easily outpaced Jelly, who persevered nonetheless, cutting the odd corner when she needed to. Jelly fought the good fight, until she tanked, whereupon she slowly limped back to the car.

I knew exactly how Jelly would feel following that romp. I knew she would regret running herself ragged, but there was no way I could convince her to pass on the opportunity. We all need to learn from experience. Has anyone ever heeded the wisdom of elders?

I was not surprised that Jelly spent most of the weekend recuperating. Will her stiffness stop her from trying to outrace the next greyhound that wants to be chased? Probably not. She’s a dog, and she does not always learn from experience. Come to think of it, neither do I.

But all is not lost. Despite Jelly’s recent stiffness and fatigue, every time the wind blows, she rises from lounging and leaps off the deck, positioning herself under the apple tree in case a delicious snack happens to fall. Each time, I drag myself agedly out of my chair, thereby granting Jelly ample time to wolf down her spoils. Jelly’s body may be old, but, at least when it comes to food, her mind is forever young.

What goes down must come up

Once upon a time I was a dieter. I lost weight, sometimes too rapidly, for short periods of time, but most often I gained it back. I have come to believe that I cannot sustain restricted eating for any period of time. Eventually I fall far off the perpetually-hungry wagon. As soon as I start forbidding myself certain foods or food groups, I crave them all the more.

Some things I have been advised not to eat for health reasons, and I can live with those few restrictions. Grapefruit is a no-no with many of my medications. Organ meats are one of the worst things a gout-prone person can eat. Although chopped liver is a Jewish staple I consumed frequently in my youth, I’m surviving fine without the delicacy as an adult. I may be on a low-sodium diet, but I still eat the odd sodium-laden restaurant meal and I enjoy the occasional potato chip from J.’s stash.

Cookie Monster in Oscar the Grouch's garbage can saying "I hate cookies"Right now, I’m losing weight rapidly, but I can assure you I’m not dieting. Six weeks ago now, my hunger switch blew a fuse. I went from eating normally, sometimes excessively, to nary a hunger pang. Normally I’m one of those people who goes from zero to ravenous in seconds. I’m perplexed I haven’t been approached to star in one of those Snickers commercials. My hungry alter ego would be a hybrid of Oscar the Grouch and Cookie Monster. Currently my hungry-grumpy self is on vacation. I eat because I know I have to, but I’m full in no time. I’m oddly fascinated by this turn of events.

When I was discussing this problem with one of my doctors, she said that there is a fine line between lack of appetite and nausea. I have been straddling that line, but remain firmly on the lack-of-appetite side. I’ve told you many times that I am not a puker.

I don’t recommend this extreme approach to weight loss and I can’t tell you how to shut your appetite loss. I am not intentionally trying to lose weight; I am having trouble eating. There is a huge difference. It’s been a while since I’ve craved a particular food and felt compelled to satisfy the craving. I miss the old days when I ate with enjoyment.

This experience is not all bad, of course. I can leave the house unconcerned about missing a meal. I no longer need an emergency snack ready for consumption at all times. And I am miraculously slipping into clothes that haven’t fit for some time. Whenever I clear out my closet, J. encourages me to hold on to some smaller-sized clothes just in case. I must be going through a just-in-case phase.

I may sound too cavalier about my shrinkage, but my doctors have reassured me there is no cause for concern. So long as I’m feeling alright (which I am), and my blood work is largely unchanged (which it is), I am not worried. I expect my appetite will come back with a vengeance once I figure out how to replace the fuse. With my renewed appetite, my lost weight will miraculously reappear. In the meantime, let me enjoy a few weeks in my skinny jeans, alright?

 

Yeah, sure, sometimes I’m grateful.

Let’s start this post by saying that I don’t buy a lot of clothes. But a few days ago I bought a t-shirt, size medium. (Hopefully it will still fit me when my unintentional hunger strike ends.) It says #grateful across the front, which I find a little Oprah-esque, but I liked it anyhow.

I don’t like to preach gratitude but occasionally I do find myself thinking of things I’m grateful for. Being alive is the most obvious one.

Soon after I bought the shirt, as if by fate, I had a texting exchange with a doctor friend, my second debrief of sorts with him following last week’s adventure at the urgent care clinic. He was kind enough to check in the evening of my incident, and somehow we got to texting again on Friday afternoon.

I was worried my friend might be angry with me for what I’d recently posted about my visit to the clinic because he’s the kind kind of guy (no, that was not one of my frequent editing errors) whom I imagine feels responsible for anyone’s mistreatment by a medical professional. That’s quite a burden to bear, don’t you think? I reminded him that he can let that go.

When I asked him whether he was angry with me for what I’d written, he responded: I could never be angry with you. To say I was touched by his response would be a gross understatement. The sentiment actually brought tears to my eyes. I know, you’re not surprised.

Sometimes someone says something to me that I know I will never forget. Some are traumatic moments, the ones where someone has blurted out something very hurtful or mean. We all have moments like those, interactions where we feel shamed or belittled or bullied. I try to let these incidents go because I don’t find stewing about them helpful. Sometimes I am successful but sometimes I am not.

But the moments where someone says something that so kind and supportive, those are moments I want to hold on to. I must have reread the text several times before I deleted it. It has been a great comfort.

Has anyone ever told me that I could never evoke anger? No one, ever. I understand why. I spend my days infuriating people with my irritability and cluelessness and rigidity and all my other tiresome quirks. Maybe this dear friend doesn’t know those annoying sides of me that would drive him crazy were we to spend too much time together.

Or maybe he does know how difficult I can be, and he still chose these words of support. That’s a true friend. So everyone should know how grateful I am. Thanks, dear friend, for debriefing with me after your very long day of work. And thanks for your continued kindness when we caught up a few days later, even if you were disinhibited by your first vacation beer. This post’s for you, bud.

And now I must go put on my new t-shirt, to drive the point home.

 Beer stein filled with beer on a wooden table at a pub

 

Why remove my tongue from my cheek? I like it there.

Very large needle

I had a long day yesterday, which I’m now going to review in excessive detail. Consider yourself warned.

Yesterday Dr. As-Yet-Nameless sent me to the urgent care clinic to address my ailing finger once and for all. Following my teeny weeny ultrasound, Dr. AYN tried to treat the infection with antibiotics, which failed, so a more intrusive approach was called for. Needless to say, I wasn’t so excited about prospect.

I commonly suffer from performance anxiety in triage. Rating my current pain as a 2 out of 10 would lead any triager to wonder why I came. I neglected to clarify that at one point the pain was a 10, and that the medication that is stopping my finger from returning to a 10 has resulted in my dramatic weight loss over the past month. I should have mentioned that, before I disappeared into nothingness, I needed action taken pronto. I understand why I was placed in the wait-forever line. I wasn’t in searing pain, I could easily skip lunch, and the problem would still be there whenever the doctor saw me.

When the doctor entered my room, I learned that she considered the barbaric procedure I sought elective. When I think “elective” I naively think “breast implants” or “facelift” or “liposuction”. (Perhaps the surgery I should get to remove my tongue from its permanent lodging inside my cheek would also be elective.) After considerable internet research, I learned that “elective” does include those procedures that are sought out and paid for, but more broadly includes any procedure that is not deemed emergent. I’m sure you knew that already.

The doctor and I may have differed on whether my procedure was elective. To me, what she needed to do to me needed to be done promptly. It wasn’t a tummy tuck! (I’ve always wanted a tummy tuck, but where would the surgeon tuck my ginormous spleen?) My finger needed to be dealt with before the infection spread to my bone (although at that point she’d likely agree it was emergent). If I could have done it myself, I would have.

I am assertive with doctors. If I am at odds with something they say, I tell them. That very day, I questioned Dr. AYN’s directive that I attend the clinic rather than waiting for her to refer me to a specialist, but she insisted.

There was no point in quibbling with Dr. Annoyed-With-Me over the definition of “elective” because, within minutes, elective or emergent, she’d be performing a barbaric procedure on me. Why anger her before she started causing me pain? She’d already proven she wasn’t the coddling type.

Procedure now done, I still wonder whether I could have handled myself differently. Was Dr. AWM punishing me for Dr. AYN’s misjudgement? Should I have protested Dr. AYN’s plan more vociferously? Was I at fault? Does it matter? It’s over, and my finger is really sore. And, Dr. AWM is referring me to a specialist to finish the job she started. Oh, I can’t wait!

In the spirit of volunteerism, would anyone like to attend that appointment in my place? I’ll gladly loan you my photo-less health care card. I guess you’d need to borrow my finger as well, though. That could be more complicated. Forget it.

Volunteering by proxy

Calgary Stampede midway crowded with people

That’s me in the top right corner.

I must apologize for not writing yesterday, especially since I know how you hang on my every word. I spent the day carousing at the Stampede grounds. Just kidding. I’d rather sleep than watch adults young and old embarrassing themselves in public.

Stampede is a time for reckless alcohol overconsumption. With that comes an increase in philandering, and of course, STIs and unwanted pregnancies, despite the local campaign to “put a condom on your cowboy.” Not surprisingly, divorces spike following the week-long party. Stampeding sounds too risky to me, so I hunker down at home instead.

J., on the other hand, plans two visits to the grounds with our good friend, Triple D. They will be there from supper time until midnight both nights, but they won’t have time for drinking or philandering; they’ll be selling lottery tickets for fancy cars. They are volunteering for this task in support of PALS. J. noticed that PALS was seeking people for this fundraising event, and not only did she volunteer for two long shifts, she signed up Triple D, who is known for always making time for a good deed.

When I became a PAL, I learned that, in addition to our regularly scheduled visits, I’d be expected to support the organization in other ways. This included, for example, interviewing new recruits, helping out on the multi-station dog-assessment day, or attending fundraising events with or without my little pal in tow.

Most of these activities involve longer hours than I have the stamina for, so I pass. I do my part by volunteering for one-time visits–last week’s parade is a recent example, although that day felt more like a gift than an obligation–on top of our regularly scheduled visits with the old folks.

The same is true for Calgary Blood Services. I can’t donate blood, so I feed soup and cookies to those who can, and try to encourage healthy others to donate in my stead. I’m grateful to J. for persisting in giving despite her fainting after her second blood donation, and to my dear friend known affectionately as Spongebob (for reasons that will remain a mystery to you) who donated for the first time last month with no ill effects. Anticipating the milkshake he’d be buying on his way home probably helped him through the itty bitty pin prick.

Maybe I shouldn’t say that I pass on the volunteer duties I can’t fulfill since the truth is that I pass them on to gracious and willing others wherever I can. I wish I could volunteer myself, but I know my limits. A 6-hour sales shift ending at midnight–assuming I did not sleep through the chaos like Jelly did at that parade–would knock me out for days. I also know that the screening interviewers at Canadian Blood Services would laugh at me if I tried to donate blood despite my leukemia. I know what my limits are, and that there are some things I can’t do, however much I wish I could.

Kudos to those folks, J. et al., who donate their time or their gift of life (blood, that is) in my stead. Their generosity makes my heart sing, and I’m not the heart-singing type.