Games sick people play

Image of EKG one pulse

Sometimes sick people like me don’t get out much, so when we do, we try to make the best of it. I find ways to amuse myself, even if I leave Super Grover at home. The grocery store provides no end of possibilities. Today, I interacted with any young child I met because that’s always fun. Then I spent a half hour whetting my baking appetite at the bulk bins while watching people sneak random tastes.

Then I wandered over to the blood pressure machine at the in-store pharmacy. That’s always the highlight of my outing. My blood pressure is hovering around 85/45 of late, which is well below normal, so I left my results for the next person to find. Did she feel inferior? Or did she call 911 out of fear that someone had died in the store?

Forgive me that awkward segue into my second medication dilemma of the week.

Years ago, Dr. Liver prescribed a medication to protect my liver. This drug keeps my pulse low, ideally between 50 and 60 beats per minute (it was 53 today), but it’s more commonly prescribed to lower blood pressure. I’ve been on this drug for 12 years, but because of recent concerns about my liver, the new Dr. Liver doubled my dose. I was on that dose many years ago, but it made me a zombie, so I reverted back. This time, I don’t have a choice. I can raise the dose by 50% or 100%. I tolerated 50% for a few weeks without incident, so I tried a 100% increase.

Remember all that falling I did over the summer? This drug may be the culprit. People with low blood pressure can become dizzy and fatigued. I found myself looking a bit drunk for a while there. Dr. Blood actually sent me for a brain CT scan to ensure there was nothing lurking inside. I hadn’t mentioned it because nothing untoward was found, only a brain, thank God.

This medication-related dilemma is fueled partly by my competitive nature. If Dr. Liver wants me to keep my pulse between 50 and 60 beats per minute, shouldn’t I aim for 50? Won’t that slow the progression of my liver disease more? But if I keep on this dose, and my blood pressure follows suit, I will be walking around in a haze. Add that to my exhausting chemotherapy and it’s no wonder I’m dragging myself around when I’m not sleeping.

I have compromised by alternating 100% and 50% increases daily, which makes me a bit less woozy. Dr. Blood and J. want me to come down to 50% daily, but they’re not the ones worrying about dying.

So I can continue to walk around in a fog in order to keep my liver happy, or I can lower my medication dose knowing that my liver may rebel sooner. What’s more important, quality of life or staying alive? Maybe you can resolve this one for me, dear reader.

I am hoping dilemmas do not come in threes because I’ve used up all my brain power on these two. Thanks to the recent scan, at least we know I have a brain.

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I didn’t know what a dilemma was until I had one

Person looking into cloudy day with large question mark on head.

This week I am recovering from the intense frivolity of last week’s vacation. (Super Grover wasn’t the only one having fun.) In case you were wondering, I flossed every night we were away. Consider me a living example of the potential for change.

Hey, wasn’t the moon super last night? I figured I’d better take a look, knowing I’d likely miss the next supermoon eclipse 18 years hence. I got so excited when I saw the looming red ball through our window…until I realized it was our streetlight. But less than an hour later, the cloud cover dissipated and I saw a partially eclipsed red moon. Neat-o.

Now on to weightier matters. I always thought a dilemma was trouble choosing between two alternatives. “Do I eat the red velvet or the maple bacon donut?” According to J. and the dictionary, a dilemma is a choice between two equally negative alternatives, as in, should I clean the toilet or clear out the gutters? Who are we kidding? I never do either of those things.

Now that I understand what a dilemma is, I have one regarding my health. I think my new chemo is affecting me in two ways I’m not digging: it’s making me exhausted and it’s making me fat. Remember, this medication is not supposed to affect my cancer at all; it’s to help me with the symptoms associated with my polycythemia. Do I stay on a medication that’s supposed to help me or do I get off the darn stuff? Would you stay on a medication that had such negative side effects?

I’d like to think I’ve accepted that my weight is largely beyond my control of late. I don’t like gaining weight, but if gaining weight is a side effect of a medication’s helping me, I accept that. I even went out and bought a few pairs of pants that I did not have to squeeze my ever-enlarging tuchus into. (The brilliant person who came up with stretch pants should be nominated for the Nobel prize in body image.) I didn’t enjoy the expedition, but I’ve learned that pants fit me better now that my tuchus is almost as large as my spleen-filled belly.

To be fair, some of this weight is fluid, which suggests that my liver ain’t happy. I know it’s fluid because my eyes are as puffy as my Basset hound’s most mornings, and the deep indentations from my socks take hours to subside at the end of the day. These, folks, are sure signs of fluid retention, and not just my defensive excuse for eating too much of late. We’ll leave the other obvious sign to your vivid imagination, sweet pea pea.

It’s the fatigue that I’m struggling with more. My naps are becoming longer and deeper, and I am awakening more slowly. J. is hiding my car keys more frequently because I’m walking around in a stupor. Is there any point taking medication that’s supposed to make me feel better if I’m not awake to experience it?

Next week I see Dr. Blood, and I will be asking her this very question. I was hopeful about this new chemo, but I’m ready to call it quits. We’ll see what she says.

Another vacation day in the life of Super Grover

After a few days in the country, Super Grover has found his way back to a city again. Can you find him?

He had a leisurely start to the day, hanging about in his robe.

Super Grover in hotel robe draped at corner of couch

Then he enjoyed his morning coffee on the patio. He does enjoy the finer things in life.

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Once we headed out, he met a horse, but he kept his distance. He’s kind of scared of horses.

Super Grover photobombs a horse plant sculpture

Then he met a whale, and, just like Jonah, he ended up in its mouth. But Super Grover begged and pleaded with the whale, so he made it out alive.

Super Grover in mouth of whale-shaped plant

Super Grover understands the importance of getting back on that horse, so to speak, so soon after he met a raven. Did he really have to taunt her? Close call on that one.

Super Grover in mouth of raven on totem pole

Super Grover was a bit traumatized by all those near misses with the animals, but he never stopped smiling. Even monsters with PTSD can hide their true feelings.

In memory of our trip to London, and to distract him from his trauma, Super Grover enjoyed a traditional afternoon tea with us. After that morning coffee and all those early challenges, he ordered herbal tea. You know how caffeine can make anxiety worse.

Super Grover having tea, plate of goodies in front of him.

That was a lot of excitement for one day, so we all think it’s time to head home. Yes, all good vacations must come to an end, even for Super Grover.

 

The Ongoing Adventures of Super Grover

Super Grover continues to enjoy his vacation.

First he visits a working farm. The chicken looks a bit perplexed, and a little angry, don’t you think?

Super Grover photobombing chicken behind wire fence

Then Super Grover leads the way on a not-so-challenging hike in the rainforest and almost falls through the bridge. Thank goodness for his big fat head.

 

Super Grover poking head out of walkway in forest

The view at the end justifies the effort. Super Grover loves a good beach.

Super Grover hides behind dead tree trunk with ocean view in background

Finally, it’s time for a beer. I may not be able to drink but Super Grover can. And he wasn’t driving.

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Who cares where Waldo is anyway?

Super Grover bookmark alongside eggplant adorned as personWaldo has been around for some time, hiding in crowds (doesn’t that guy ever need quiet time?), peeking from amidst the masses. Well, I think his time has passed. For one thing, he’s been wearing the same outfit for years. That red and white striped shirt must be filthy by now. And he never seems to age. I resent him for that. Those big round glasses he’s always had are back in style, at least. How about that constant smile on his face? Nobody can really be that happy.

In honour of my vacation, I thought we might play “Where’s Annie?” The only problem with this notion is that I’ve always gone incognito on my blog–it’s Annie Doe to you–and I don’t plan on giving that up now. A girl needs a little privacy. So I’ve asked Super Grover to fill in for me.

Super Grover is a variation on Grover, that cute, cuddly blue monster on Sesame Street. Except Super Grover is Grover’s superhero persona. He has a cape and flies through the air, in search of little muppets in distress. Somewhere along the way, he always has some disaster and crashes to the ground. I worry he might have a brain injury from all the falls, however. Maybe that explains why he’s so simple and, like Waldo, happy all the time.

So we’ve taken a few shots of Super Grover on our trip. He’s not as elusive as Waldo because he’s secure in his insecurity. You shouldn’t have trouble finding him. Just look for the crash helmet.

Super Grover alongside zucchinis made into racers

I’ll gladly take your gay blood

Chart of groups in high need of blood donations from Canadian Blood Services

Canadian Blood Services’ transfusion needs.

I’ve been posting more than usual in the “Being Gay” category lately. Can you bear with me for one more? I’ll go back in the closet soon.

One of the groups marching in the Pride Parade was the Canadian Institute of Diversity and Inclusion (CCDI [do you think their acronym writer has a learning disability?]). The group’s motto? “There’s no such thing as gay blood.” CCDI is challenging Canadian Blood Services’ longstanding ban on sexually active gay men’s blood donations.

In the mid-80s, Canadian Blood Services instigated a lifetime ban on sexually active gay men (their acronym is “MSM” for men having sex with men) donating blood. Anyone who wants to donate blood has to answer a series of screening questions, and if a man acknowledges he’s an MSM, he is turned away.

In 2013 the rules changed, but not by much: gay males who have abstained from sex for the past 5 years are free to give, but any gay man who has been sexually active more recently is refused. (In the US, it’s 12 months, but even that limitation is being challenged.) Does this not presume that every gay man is recklessly sexually promiscuous and takes no precautions to lessen the possibility of HIV transmission? What about all the promiscuous straight people? Does the name “Ashley Madison” ring a not-too-distant bell?

I understand why this ban was instigated: HIV was a very scary beast when it first appeared in the early 80s, and there were not yet ways of screening for it. That resulted in the tainted blood scandal, a horrific time when too many people, including a generation of hemophiliacs, were infected with diseased blood. But those days are long past. Blood can now be tested for HIV and other pathogens, and unsafe blood is not transfused. Given that, the ongoing ban is prejudicial.

People with blood cancers often need top ups. Other cancer patients undergoing treatment often need blood products too because many chemotherapies suppress blood cell production. Even zapping (radiation) can interfere with blood counts.

I have needed a ton of blood products since my leukemia diagnosis 3 years ago. Plasma, platelets, red blood cells, I’ve received them all. I was most in need when I was first diagnosed with leukemia and could not keep my counts up. I’d have been sunk if blood donors had not given generously of themselves.

So, Canadian Blood Services, maybe you could start collecting gay blood again. Next time I need some, I’ll take it. I don’t care who it came from, and I’m trusting you’ll screen it carefully. And I imagine I’m not the only gay person willing to take those blood products off your hands. Start with giving gay blood to the gays, and when they don’t get sick, maybe the straight people will take some too. You never know. This is Canada, the home of gay marriage and equal rights for people of all shapes and sizes and persuasions. I hope you never find yourself in need, but if you do, wouldn’t you appreciate those donors?

Just call me Granny Annie

Pill case with "Keep calm and take a pill" inscribed on topI’ve been such a diligent patient for so many years now, nose to the grindstone, completing all assigned tasks diligently, that I’m amazed I have not yet merited an administrative assistant. This past weekend, I got a harsh reminder of my need for one.

Over the past six months or so, I’ve become a teensy bit overwhelmed with my drug regimen. I’m up to 12 pills (medications and supplements) each day split over four doses from two different pharmacies. I used to have many of my pills coordinated for simultaneous refills, but I’m well beyond that point now. Yes, I’m officially pharmaceutically challenged.

I reluctantly broke down and bought a granny pill case. You know the kind: they have four compartments each day. Trying to manage more than one dose in a little compartment was becoming too challenging for my indelicate fingers.

Last Saturday, when I started my regular pill sorting, I realized I was short two medications I had recently renewed. I found three other prescriptions I’d ordered that day, but these two drugs were nowhere to be found. I first checked my cluttered medication drawer. (Yes, one full kitchen drawer looks like an overstocked pharmacy shelf.) After an hour of searching, I spent several more fretting.

I know I lose a lot of things. I leave the house without my keys, my wallet, my common sense and my better judgement many days. But I’ve never lost my pills.

To understand what happens next, you need to appreciate that there are several pharmacists at the local pharmacy. Some are lazy, others abrupt, and when those ones are behind the counter, I avoid stopping by unless it’s urgent. The kind and accommodating pharmacists I’ve known for many years are my go-to guys.

I swung by the pharmacy on Saturday and spied a lazy one. When I was last there, she told me I owed $121 for my prescriptions, which are covered 100% by our health plans. No other pharmacist has ever made this mistake with me. Her careless error delayed our transaction significantly. I, unfortunately, lack patience or forgiveness.

My favourites would not have made this mistake. They would also have mentioned, when they saw my file, that my doctor had never gotten back to them about the renewal request on those other two medications, and they’d offer to renew them or send another request for me.

Yes, the two prescriptions had never been filled; I hadn’t lost them. Which is exactly what my beloved pharmacist told me when I showed up Monday panicking but apologetic (a minor relapse on the apology front), thinking I had been a bad patient.

There are three morals to this story: 1) A good pharmacist is worth his weight in expensive prescriptions; 2) I need to learn Excel. A spreadsheet would have alerted me to the problem and preempted this panic; and 3) Most importantly, J. is always right. While I was stressed out, she calmly told me that the prescriptions were probably never filled because, however scatterbrained I am, I never lose my drugs. Then she made me say, “Yes, honey, you are always right.” Sometimes it’s hard living with perfection.

 

L’Shanah Tovah u’Mitukah

Happy New Year to all my Jewish readers. I hope you have a good and sweet year, to translate for those who cannot understand my transliteration. I think the Jews got it right making the New Year in the Fall because it’s a good time to: a) review the past year and consider our intentions for the following year; and b) to buy new clothes and office supplies. I love office supplies.

Although I’m not a synagogue goer, the holiday still holds special meaning to me. Often J. and I vacation around this time so we miss out on celebrating with friends but this year, because we’ve cut our vacation short–yes, J. won that one–we are in town. Unfortunately, our local Jews had all made other plans by the time we confirmed our last-minute vacation dates.

sliced apples on plate, one hand dipping one slice in honey in bowlBut rather than sitting home eating apples and honey on our own, we were saved by some neighbours we’ve gotten to know through our shared love of Bassets. We have only one to their three, but they are still willing to associate with us. Drs. Hound and their hounds invited us over for the first evening of Rosh HaShanah. Anyone who would not only invite us into their home but encourage us to bring our ill-behaved dog and feed us? We’d have been fools to decline. They assured us Jelly could do no more harm than their own dogs had already done. We went to prove them wrong.

First off, it’s worth noting that Jelly may be three years older than their two mischievous two-year-old boys, but Jelly entertained the young’uns all night. She quickly figured out that this home is set up like our own, with a circuit around rooms on the main floor, so she decided to take everyone on an indoor off-leash romp. And then she did it again. And then she did it again. Eventually we lost count.

While the dogs were playing, our hosts prepared quite the feast. Today’s piece of unsolicited advice: If ever two Ph.D. neuroscientists invite you over for dinner, accept without hesitation. What is cooking but science, after all? We had a 4-star Michelin meal (okay, okay, Michelin only gives up to 3 stars, but it was that good). We tasted our first sous-vide salmon, creatively made using equipment reclaimed from their lab’s discard pile, and carrot-top pesto from carrots they’d grown, among other delicacies.

My dessert, although the best apple-ginger galette I’ve ever made, felt a bit underwhelming after that 4-star performance. Considering the meal, I should have rolled my own puff pastry rather than relying on the President. (That was a truly Canadian inside joke.) After all the effort the Drs. Hound had gone to, I felt a bit embarrassed. Still, they perked up when I offered to leave leftovers behind, which suggests it was passable.

This wasn’t our most traditional Rosh Hashanah dinner, but it was a lovely evening with new friends who welcomed us into their beautiful home and bestowed wonderful food upon us. And even Jelly, amidst her counter surfing, had a blast with her Basset buddies. What are holidays for if not celebrating for with friends?

Four basset hounds running at full speed.

Now just imagine all this activity indoors.

The Truck Scale of Holistic Well-Being

Red and white 18 wheeler with long loadLast Tuesday, following all the weekend excitement–out-of-town company, crying at the Pride Parade, visiting with friends, and perhaps a bit of the flu thrown in for good measure–I felt crummy. I had the kind of day I call a Leukemia Day, where I’m acutely aware that I have cancer. On a scale of 1-10 of general unwellness, I was a 10.

But I’ve told you before that 1-10 scales don’t really work for me. Either I feel sick or I don’t. I’m concrete and I can’t distinguish fine gradations easily. Am I a 4 or 5 or 6 today? I have no idea. And I can’t compare how I feel today with how I felt yesterday. I was a 4 yesterday and I’m a 6 today? Beats me.

But I get annoyed by people who complain about things and don’t come up with a solution. So, in order to practice what I preach, I created my own wellness scale that I thought would better capture how I’m feeling day to day. I’m speaking of global wellness here, which may include fatigue, pain, mood, and whatever other factors make a person feel unwell.

Because I prefer pictures to numbers, I decided to use trucks as reference points, hence the Truck Scale. This scale is based on the size of truck that has hit me that day. (For you to accept this premise, you’ll have to suspend concerns about my bruising or even getting killed when the truck hits me. If I can, you can.)

There are rare days when I don’t get hit by any truck at all. No sleeping drivers send me flying, no zombie-like Annie walking out into the road without looking both ways. Those days are the best, and are lowest on the scale. I don’t have tons of days like these.

Next on this scale are the days I get hit by a Tonka truck or maybe one of those electric vehicles parents buy their overindulged preschoolers. Those days aren’t too bad, but I’m still aware I’m not quite myself. Maybe I’ll forget to do up my fly or lose my wallet or some such half-awake thing.

Getting hit by an F150 would fall somewhere in the middle because F150s are built Ford tough. I imagine it wouldn’t feel great if a truck this size took me down. And imagine how I might describe my unwellness that day: Sorry if I seem a bit out of it, honey, but I was RAMmed by an F150.

On the worst days, I feel like an 18-wheeler with a full and heavy load has taken me down. Recall Tuesday. I felt crummy all day, napped hard in the afternoon, and got very little accomplished. I hate those days. I also get frustrated when I wake up feeling okay (smaller truck day), and crash later (18-wheeler appears out of nowhere).

Wednesday wasn’t much improved, perhaps an F150 day. Come to think of it, I’ve been up and down the Truck Scale all week. During those 18-wheeler days (a.k.a., Leukemia Days), I remind myself that those days don’t occur that often. That helps.

Tonka truck

Another doctor wants a piece of me. Just not that piece.

Woman holding cell phone, upset by text she's readingI spend a lot of time in waiting rooms, as you know, and sometimes texting is my distraction of choice. My poor Sister in Liver Disorders is often the textee because no one understands waiting better than her. She’s already heard this story. In fact, there would be no story without her.

Have you been on tenterhooks wondering what happened with Dr. Eye Surgeon last week? I ended up driving, despite my fatigue. Not one of my better decisions. As always, don’t do what I do.

The receptionist greeted me with the same medical history form that I had already forwarded to the office as requested. When I reminded her, she said: “Oh, no one input it.” Rather than responding, “Chop chop!” I returned her clipboard and started my waiting.

The technician started on all the same eye tests Dr. Eye’s assistant had completed a few months prior. The problem is not with my eye; it’s a lump on my eyelid, kids. Eventually, the reason for my visit dawned on her, so she kiboshed the rest of her usual routine and sent me out. But first she remarked, upon seeing my discoloured legs, which my shorts exposed: “Boy, I don’t know anyone who bruises worse than me.” You’d be very proud of me for looking at her quizzically rather than sharing my inside voice. She caught her own inappropriateness without my help and muttered, “I guess I shouldn’t have said that.” Trust me, I’m not competing for bruising excellence.

I was moved to wait for the doctor, who flew in and out. It was all a blur. Since he hadn’t reviewed my history, he had no idea I had leukemia. He believes my lump is simply a response to infection but because I have leukemia I get the full meal deal–removal and biopsy–which will be quick but will require a needle to my eyelid. “You won’t like that very much,” he added–why do doctors say such things?–which prompted a first-date discussion about my need for sedation. Yes, Dr. E.S. would have left in 120 seconds had I not needed another 60 to address sedation.

Somehow in that three minutes, Dr. E.S. shared that he used to drive while he was so tired that he’d fall asleep at the stoplight, only to be woken by honking cars once the light turned green. And this man will be wielding a scalpel near my eye? Oh my!

To complete my suffering, the booking assistant beckoned me after yet another wait. She opened by stating I should be grateful my surgery was scheduled within 6 weeks as the doctor had requested, and that she’d had to move two other patients to do so. I would have bowed to kiss her feet in gratitude but I was just too darn tired by then.

During my play by play to my dear Liver Sister, I texted, “I’ll have to have it out.” Since I’d omitted one essential detail, she responded, “YOUR EYE?” [Yes, the caps are hers.] Ah, the dangers of texting. I clarified that miscommunication quickly so I could drive home before I too fell asleep at the wheel. If I had, I sure wouldn’t have bragged about it.