A bittersweet celebration

Double scoop ice cream in waffle cone

Six years ago, J. and I tied the knot in our living room. The only ones who knew about the plan were: a) J. and me; b) our two Bassets at the time, Peanut Butter and Jelly; and c) the marriage commissioner we had hired. Even the witnesses, who had driven in from out of town that day, had no idea why we were rushing them through dinner.

During the ceremony, which was short and sweet, we said our vows, exchanged the rings we had already been wearing for many years, and legitimised our relationship after 12 years together. We were no longer living in sin. Peanut Butter brought some levity to the event by dropping her ball by the commissioner’s feet in the middle of the ceremony.

We got a lot of flak over our micro wedding. People were sad they weren’t invited to celebrate with us. We were legitimizing a relationship that was 12 years old already; we didn’t want to register for kitchen appliances we didn’t need, we didn’t want to drag our long-distance families to Calgary for a brief ceremony, and you’ve got to know by looking at me that I’m not the kind of person who would enjoy getting gussied up in a white wedding dress, Not my thing.

Then there was the whole gay thing, and knowing some were uncomfortable with the idea of two women tying the knot. Let’s spare everyone the inconvenience and potential discomfort, we thought.

No, it wasn’t fair of us to make the decision to exclude our loved ones. They would have been happy to celebrate with us, and we should not have taken that choice away from them.

Some days I do regret how we married. I wish we’d had our nearest and dearest there with us. Sometimes J. describes the love and support for the union of a marriage she’s officiated, and I am sad that we deprived ourselves of those sentiments on our wedding day.

I may regret how we married some days, but I never regret that we did marry. However long we’d been together prior, marriage felt different. I’m glad we made that commitment to one another.

Two months following our wedding, I almost died in the ICU following my leukemia diagnosis. In sickness and in health, people joked, in between discussions of funeral arrangements. Sure, we had the documentation in place that would allow J. to make medical decisions on my behalf but being married meant that J.’s decision-making power was assumed.

In the six years since, I could not ask for a more devoted partner, one who has stepped up to every challenge that has crossed her path. Many would have bailed, but not J. The sicker I’ve gotten, the more she’s shone. She is still my spouse but she is also now my caregiver. She cooks, she cleans, she does laundry, and she drives me wherever I need to go. All without complaint.

In the end, the anniversary was bittersweet: cause for celebration mixed with sadness that this would likely be our last. The one thing that salvaged the day was ice cream for dinner. Ice cream cures all ills, I’m told.

Advertisements

Attempting to harness my inner nudist

The other day, I was doing some basic training with Jelly, and she confused Shake a Paw with Down. That is not unusual. When I start firing commands, Jelly goes through random behaviours to garner a treat. Sometimes she hits the correct command and sometimes she doesn’t. Blame it on her trainer (me).

This little mishap led to unfortunate consequences. One of Jelly’s deadly nails scratched my forearm, immediately drawing blood and leaving a gruesome bruise. If I hadn’t been there when it happened, I’d think I had fought off a grizzly.

The incident made me realize how very fragile my skin is, and how prone I am to bleeding with such critically low platelets. There have been other signs, of course. My arms and legs look freckled, although if you look more closely you will notice that the spots are too red to be freckles. J. used to ask where some random bruise was from, but she has become aware that I could have bruised myself simply by knocking one arm against another, or leaning against a wall. Who’d have thought I’d ever become so sensitive?

Because I have become fragile as a flower, finding clothes that will not injure me has become challenging. Anything with elastic or a closer fit is likely to bruise me. The seam of my jeans, the waistband of my yoga pants, and don’t even get me started on bras–snug elastic, metal clasps, adjustable rings–there is no end of potential bodily assaults caused by that oppressive undergarment.

I promised myself that when I my illness progressed, I wouldn’t sit around in my pyjamas all day eating bonbons. First off, bonbons aren’t holding the appeal they once did; I don’t feel like eating much of anything, sweets included. Additionally, what a better reminder that you’re sick than not wearing real clothes ever? Sure I often can’t be bothered and leave the house in (loose) yoga pants, but normally I’m all for getting fully dressed in the morning.

In my current sensitive condition, I’m coming to appreciate the appeal of leisure wear, however. I used to watch my share of Y & R, and I recall the rich wearing all manner of lounge wear. Maybe I should seek out muumuus, or dressing gowns, or some other variation on that loose-clothing theme that will be less likely to injure my fragile skin.

Yet even a muumuu has a seam or two–the fabric has to be sewn together somewhere. Which leads me to my final option: nudity. I could hang out around the house in not much at all, thereby eliminating the opportunity for clothing injuries. Unfortunately I’m not the nudist type, and clothes do serve a function of covering my many bodily imperfections. Also, clothes act as a buffer when I bump into a wall or hit some limb on a cupboard door I have forgotten to close.

For now, do not worry: if you drop by, I promise to be be fully clothed at all times. at least until I can come up with a reasonable alternative. I was considering full coverage in bubble wrap. Do you think it would be see through or could I finally ditch the bra altogether?

Woman wrapped neck to knee in bubble wrap

Some assignments are hard to study for

Empty lectern in sanctuary with microphone

This weekend, at one of my last PALS visits with Jelly–it is time for us to play bow out–a woman I’d visited previously asked if I was taking leave because I was pregnant. From the cradle straight to the grave. I didn’t have the heart to tell her that, in fact, she had mistaken my spleen for a fetus. Please folks, don’t assume you know what’s going on under that tight shirt. Save yourself the embarrassment of being wrong.

I’m telling you this story only to avoid discussing what’s really on my mind. I’ve recently been given the hardest homework assignment of my life death. I envision a big F on my horizon. I’m procrastinating despite my quickly approaching deadline (and I don’t mean “due date” here).

When J. and I met with the rabbi, he suggested I write my own eulogy. Very clever, I thought. This way, he could get to know me and to find out how I’d want him to characterize me. The task seemed so creative and insightful at the time. And I love to write; I was excited to try.

I’m not doing very well. I’ve drafted and redrafted my sendoff to no avail. What I’ve written so far would put you to sleep. What would I want to capture in my eulogy anyway? I could list accomplishments, few that they are, and bore you to tears. I don’t want to be remembered for what I’ve done in my life but for the kind of person I am (I was? But I’m not dead yet!).

If you asked me to write your eulogy, assuming we are close, I’d enjoy trying to capture you to share with others. But characterizing myself? That’s a lot harder.

You know I love to write. Writing my blog has never been a challenge. Absurd ideas come to me and within an hour or two, I’ve dumped them on you. Some posts are better than others because I can’t be at the top of my game every day. No one can. I do the best I can on that day, knowing that on another day, I might be able to do better (or I might do much worse).

But back to the eulogy, which I’ve been writing for 4 years already. I’ve titled it Muddling Through Leukemia, but I’d consider the blog my evolving perspective on life and death. If you want to know who I am, who I’ve aspired to be, and where I’ve failed–oh, how I love to emphasize my failures–read my blog.

I can’t ask the rabbi to read four years of posts to get a flavour of who I am, though; that would be unreasonable. So I will try to draft something for him, if I can find the emotional energy to do so in the midst of all I am dealing with at this time. And if I fail miserably, I trust the rabbi will be able to fill in the blanks. He strikes me as extremely capable, and I imagine he has more experience with eulogies than I do. And he is compassionate, so maybe he’ll cut me a little slack. If I’m lucky, I’ll end up with a D, since I don’t have time to repeat the course.

The moment I learned I’m solely the hand that feeds her

Dog curled up fast asleep on her dog bed.

I’ll be with you in a while.

We adopted Jelly over 7 years ago. The little waif was found wandering, abandoned by her human family. Peanut Butter welcomed Jelly warmly into our home–more accurately, over time they developed an understanding–and J. and I embraced her. Now Jelly is our one and only and the focus of our excessive attention.

J. has always been Jelly’s Mother Superior, as you know. J. is the fun parent, and I’m all discipline. Jelly and I have our special times but I’m clearly not as loveable as J. Sadly, I can’t walk Jelly as much as I used to. Our special mother-daughter outings are now primarily our PALS visits.

This brings me to my sad awakening this week. We have an unspoken rule in our house: whosoever is coughing her guts out relocates to the basement bedroom at night. Currently, that would be me.

When she was younger, Jelly did not like to have her pack separated at night. She’d pace in the wee hours of the morning searching for the missing parent, alert for sounds of movement downstairs, and she’d rush to the basement door when she heard the absentee parent climbing the stairs in the morning.

Now that she is getting older, she takes these separations in stride. She does not react excitedly when the banished one resurfaces from the basement. By this I mean she’s too busy sleeping to say hello.

Last Tuesday morning, however, when we needed to arise early to get to the cancer centre, Jelly did not get kibbled immediately upon awakening as she normally does; she had to wait half an hour for her repast. While she was waiting, I arrived upstairs from my seclusion. The dog who is usually fast asleep when I resurface was wagging her tail furiously at the basement door. She greeted me effusively for the first time in the three mornings I’d been absent. I asked J., “Has she been fed?” (Consider this an excellent example of a rhetorical question.)

Petless people, don’t pretend you can’t relate to this scenario. I’m sure your teenager has never ignored you for days, only to be all lovey dovey when he wants something, like a lift across town or a later curfew that night or cold hard cash. And when you indulge him, I’m sure he remains sweet as pie for weeks afterward. Or maybe not, until he needs something again, that is.

The only difference for me is that food is my only bargaining chip. Jelly has never seemed interested in the car keys or a later curfew. And have I mentioned she’s started putting herself to bed early in recent weeks? Around 9 p.m., she saunters down the hall and looks back to see if we’re following. When we don’t budge, she shrugs and continues on to the bedroom. Of course her earlier bedtime is unrelated to her wanting her nighttime treat.

I told you, Jelly loves me for my capacity to feed her and that’s all. I’m hurt but I accept that parenting is often a thankless job. Except for the occasional tail wag and snuggle, and the unbridled adoration when she hears the treat bag crinkle.

Twenty-four hours in the life of a medically fragile patient

Shot inside infinity room, lots of mirrored glowing lights, by Yayoi Kusama

Did I happen to mention that we almost didn’t make it to Toronto? After a month of planning, scheduling doctors’ appointments and transfusions, and corralling the whole family together in one place, we almost bailed.

Last Friday morning, a few hours before our flight, my nose started bleeding, which is not unusual given my critically low platelets. It wasn’t a gusher, but a slow leak that I couldn’t seem to stop, despite my best efforts. I wasn’t worried about the little blood I was losing (although it seemed a waste of the precious transfusion I’d received the previous day), but I was worried about the impact the pressure change on the plane might have. Over the course of the morning, I was becoming increasingly panicked, which I’m sure wasn’t helping.

As the time for our departure neared, J. called on our on-call nurse friend Karen, who wisely suggested ice. The ice added glamour to my appearance and slowed my leak significantly, until I removed it for fear of frostbite, only to restart the bleeding. Tick tock tick tock.

We were at a loss, so J. called the cancer centre for advice. Dr. Blood Lite responded to our 9-1-1 call, confirming that we were safe to fly if: a) I kept icing; b) I used a nasal decongestant to shrink the vessels in my nasal passages (why didn’t I think of that?); c)  I lowered my head during take off and landing. With his okay, J. haphazardly threw our clothes into a suitcase so our dear friend Triple D could whisk us to the airport.

Once we finally arrived at our departure gate, who greeted us but two PALS dogs. Of course I cried when I saw them. I wasn’t expecting to see any PALS because we were at the airport outside their usual visiting times. Their kind humans had arranged a special visit especially for us, although we reluctantly shared the dogs with those around us. Boy did I need a little doggy calming by then. They were the perfect antidote to my frenzied morning.

Finally we boarded the plane and I set myself up in my window seat with ice and tissues, trying to hide my bloodiness as best I could. The stewards were attentive to us throughout the flight, replenishing my ice as needed, and even offering me free potato chips as if that would help. Ah, the unexpected perks granted a dying person.

We arrived and my bleeding tapered off so we could carry on with our weekend. I needed this trip, not only to see family, but also to attend a special visit to an art exhibit I’d expressed interest in. Free chips are one thing, but a highly coveted entry to an art exhibit? My sis contacted someone she knew at the gallery and explained my situation, whereupon he granted her two golden tickets to the show. Because of these tickets, we were treated like royalty. What a spectacular experience.

People have shown no end of unexpected kindnesses when they’ve learned I am dying. Given all the challenges I am up against daily, I am so appreciative of their generosity. Their gestures are the perfect distraction from my daily challenges.

Room of big pink spotted spheres by yayoi kusama

Who let the dog out? Me! Me! Me!

I am still recovering from Wednesday’s fiasco. Hours spent waiting in hospital only to be sent home with nothing to show for it. I learned that repeated transfusions make the crossmatching process (finding donor blood the patient won’t react to) take longer and longer.

This complex crossmatching caused the delay, so that by the time they’d identified a match for me, it was too late to start the transfusion. That’s why I was sent home until the next day.

Finding a place to transfuse me the next day was an issue. Space is so limited at the cancer centre that the best they could do was schedule me at two different hospital locations, one for each of my transfusions. First, though, I’d have to go to yet another location for my IV iron infusion. It was going to be a long, complicated day.

I arrived early for the iron, but the nurses had trouble locating a vein for the IV. Three nurses, three pokes, and 40 minutes later, I was panicking about making it to my second location on time. That is, until the Wonder Women got involved. Two of my very competent nurses simultaneously realized that my running all over the hospital would add to my stress. I was blinded by the lightbulb that went off simultaneously in their sharp noggins. They said, “Why don’t we arrange for all three procedures here? Wouldn’t that be easier for you? We’ve got the space today.”

As soon as they raised this idea, I felt so relieved that I immediately welled up with tears of gratitude. For the next half hour, the whole unit was abuzz with the prospect of making my day so much easier.

The phone calls started. The O+ blood I would be receiving–Ms. B+ thanks you, Universal Blood Donor–was redirected to this unit, and as soon as my iron was infused, the blood transfusion was started. Without my having to move an inch, a whack of red blood cells began coursing through my veins. This is what we call patient-centred care: putting the patient’s needs first. My wonder women had a busier day because they assumed my care, but they told me how happy it made them to help make my life easier.

This small gesture probably shaved a full hour or more off my time at the hospital. As it is, I was attached to an IV for almost 7 hours, arriving home in time for dinner. I was utterly exhausted after two long days at the hospital. I sent Jeeves (J.) to get the car, she took me home, we enjoyed a lovely vegetarian lasagna prepared by a caring friend, and after a few immobile hours on the couch, I went to bed. And I slept like the baby I am.

The beauty of blood transfusions is that they take effect immediately. Today I feel like a new person. This morning, when Jelly woke me from my sleep with a mushy kiss, I got up and I let the dog out. For the first time in two months. All those other days, I’ve rolled over and gone back to sleep, leaving J. to drag herself out of bed.

Amazing what a few red blood cells can do, isn’t it?

Basset hound sitting on grass

The challenges of ladling hot soup

Soup in bowl with crackers on side

Do you folks recall when I started volunteering? In the summer of 2016 I started applying for positions, unsure whether I’d be accepted for work because of my leukemia. Neither agency I approached seemed to exclude me on the basis of my illness, so unexpectedly I ended up with two volunteer gigs rather than one. I started at Canadian Blood Services in September 2016 and at PALS with Jelly a few months later.

I never thought I could sustain two weekly commitments for long, as much as I enjoyed both. I figured keeping up that pace would draw on too much of my precious energy. Some weeks were tough but I managed to attend the vast majority of my scheduled shifts. My health has been so remarkably stable over this time that there’s been no need to bail.

But, as you well know, loyal readers, my health is changing in ways I don’t yet understand. And these changes have necessitated an increasing number of doctors appointments. Jelly and I had to bail on our scheduled PALS visit last week because of my corkscrew procedure, for example.

Over the next while, I anticipate ramping up my time at the cancer centre, whether for appointments with Dr. Blood Lite, blood transfusions (thank you dear donors), or other procedures. Sometimes I’ll have sufficient notice to work around my volunteer schedule but at other times, like last week’s biopsy which I was informed of the day prior, I will not.

After considerable deliberation during one of my sleepless nights–I’m trying to make my middle-of-the-night awakenings productive–I gave notice at Canadian Blood Services a few days ago. I will have one final shift next week and then I will no longer be spending my Monday afternoons feeding people soup, juice, and cookies. I can no longer manage the two hours of heavy lifting–those soup cans weigh a ton–and dishwashing and table wiping and encouraging the donors to come back again soon. I am so wiped by the end of my shifts that even the drive home through rush hour traffic is becoming a challenge.

I could have left PALS instead, but our visits are shorter and less physically demanding. I transport Jelly to the visit site, sit on a chair while Jelly lays on the floor, and don’t move much until the visit is over. Also, Jelly has told me she’d like to keep PALSing, especially since some days her ageing body is not up to a walk. These visits get both of us out of the house with minimal effort.

Still, CBS had its own rewards. I was thrilled by the sight of a busy clinic, or of regular donors reaching milestone donations. I loved meeting first-time donors who realized the process was a breeze and planned to return. And I took great pride in eventually mastering soup ladling without major spillage or skin burnage. Not everyone belongs in food services.

I was an abject failure at one responsibility, however: I panicked on the rare occasion when someone fainted after donating. My ability to manage such crises did not improve over time. Thank goodness others could step in when I froze. We all have our shortcomings.

This is what happens when J. goes to the doctor (or the dentist)

Yellow upper case: Can I have your attention please?

You must be eager for an update on my last post. First off, thus far Jelly remains an only pup. I’m not hopeful.

Also, I am pleased to report that J.’s condition has improved dramatically. She has reduced her pain medication substantially, is eating more, and even sucked down a few potato chips yesterday. These are all excellent signs. Keep your fingers crossed that her infection has finally been quashed.

This medical crisis was uncharacteristic for J., who rarely visits the doctor. She doesn’t even have any specialists! When she does make an appointment with one of the medical professionals we share (Dr. Family, Dr. Tooth), I know she is terribly ill.

Sometimes when J. sees these docs, instead of focussing on her concerns, they ask about me. “How is Annie?” they inquire timidly. J., who oddly enough is not at the appointment to talk about me, finds their queries annoying. “Hello! I’m the patient here!” screams her inside voice.

I was first to see Dr. Root, the go-to guy for dental crises, years ago when I had a dental emergency that landed me in hospital. He treated me upon my discharge, ably fixing what a colleague had botched.

Dr. Root and I got along famously from the outset. Since my injury was so dramatic, he remembers both me and J. well from that initial encounter. He managed my care so well that J. has sought him out in her subsequent times of need. Of course she landed back in his chair last week.

While J. was writhing in pain in Dr. Root’s office last week, he asked her, not unexpectedly, how I was doing. As they chatted, J. could feel his anger escalating at how I had been treated long ago and the danger his colleague had placed me in. Then he showed J. the PowerPoint presentation he has used in his teaching ever since, which includes two head shots of me at my worst. I look like a monster, one side of my face and neck completely black and blue. When J. told me about this exchange, I realized I’ve become a haunting celebrity to local dental students. Thankfully I am unrecognizable in those shots.

I didn’t meant to hijack J.’s emergency appointment; I wasn’t even there. Even when I’m not there, I am, it seems.

Focus on the positive, J. You should stop complaining about these queries about me since occasionally our sharing medical professionals works in your favour. For example, I know you have slyly asked Dr. Family to check my thyroid if I’ve been crankier than usual. What joy you must feel seeing Dr. Family respond with her knowing smile.

Enough about J. already; let’s get back to me. Shortly, I will head to the Cancer Centre. Once I am in a drug-induced loopy state, Dr. Blood Lite will complete a procedure on me akin to tapping a maple tree. With the help of my Ativan, I will not leap off the hospital bed and flee in a panic. Today is no big deal, I say, but I’d appreciate your praying for me two weeks hence when we will reconvene to review the results. I’d do the same for you.

Picture of tap running out of maple tree

The glories of distraction, sometimes

When my life is in upheaval, as it was last week (Who am I kidding? It still is), distractions can help. I hope for good distractions, like the birth of a baby or a wedding or coming home to the new puppy I’ve been begging J. for.

[Insert short break here to complete daily check of rescue animal websites.]

What do you think of this one, J.?

Basset hound looking up at camera.Alas this New Year has been dismal from the start. My health issues are small potatoes; J. has provided the sought-for distractions, but not the kind I was hoping for.

On Christmas Eve, her elderly father was admitted to hospital three hours away. He is still in hospital and fighting a terrible infection.

How about this one? Just trying to distract you from your pain, honey.

Wild haired rescue dog--terrier typeOn top of that tremendous stress, J. is also suffering from a painful tooth infection that has spread to the surrounding bone. This is J., who has the highest pain threshold of anyone I know. She left hospital the day after abdominal surgery, and was completely off pain medication within a few days. It is heartbreaking to see her in so much agony that she is unable to function.

This one’s precious, don’t you think? 

Rescue puppy mixed breedThere are several other signs of the seriousness of this infection:

  1. J. has placed her kind and caring periodontist on speed dial.
  2. She is on her second round of antibiotics, which so far have not put a significant dent in her pain.
  3. J. actually allowed me to drive her home from the periodontist this morning. (We all know there are drivers in relationships and there are passengers. 99% of the time, I am the passenger.)
  4. Since eating has caused her such pain, J. has been on a mostly fluid diet for a few weeks now. She is hallucinating about the first hamburger she will eat once she can return to solid food.
  5. Because she is not eating, her nightly indulgence of a small bowl of potato chips has gone unfulfilled, and unfilled. A bag of chips has never lasted this long in our home, and you know I’m not the one dipping in to this sodium bomb.

So what if my bone marrow is misbehaving? I’ll sort that out soon enough. Right now what matters is that I be there to support J. It is not the distraction I might have hoped for–I still want that puppy–and hopefully it will end soon, for J.’s sake, but it will divert my attention from my own health, which is a good thing.

How about this one? Does she remind you of anyone?

Heeler cross rescue dogThis is a dramatic role reversal, as I’m sure you are aware. J. needs to be well so she can take care of me. We joke about this often, but it’s true. I am a naturally born caregiver with limited resources of late. Taking care of anyone for any length of time exhausts me.

Let’s all hope that J. is feeling much better soon, for her sake but also for mine. I’d hate for those chips to go wasted. And I’m thinking I may need her help over the next few weeks. She’ll have to get back behind the wheel the day I take that Ativan, for sure.

The things Dutch people say

Small car in deep snow

Yesterday, J. headed out on a day-long field trip, leaving Jelly and me to get into trouble on our own. And so we did.

Soon after J.’s departure, Jelly and I drove to the park to see our friends. Do you know that experience of realizing, as you’re doing something, that you’ve made a terrible mistake? An impulsive expensive purchase you know you’ll need to return, or an order of pasta when you know you’d prefer the burger and fries? Imagine how I felt when I parked in our usual parking lot at the off-leash area, which is down a small slope. I immediately questioned whether my car would get stuck in the deep slush when I tried to leave.

The answer to this question could wait. First, we were there to walk. Jelly had a great romp with her buddies, and I couldn’t delay our return to the car any longer. A client would be at my office within the hour, so I had to leave.

I could tell you that hindsight is 20/20 vision. My Dutch friends have a better way of expressing this sentiment. “Afterward, it is easier to look the cow in the ass.” Had I only noticed the cow, I would have not risked entering that parking lot.

Somehow I missed the cow. In my attempts to drive out, I circled and circled and circled the lot, my tires unable to grip anything through the slush. A kind woman I walk with occasionally, Ms. Good Neighbour, took the wheel and gave up in no time. I parked my car in the lot again and Ms. Good Neighbour drove Jelly and me home in time for my client. I’d deal with my predicament later in the day.

Following my client, I contacted my friends, Drs. Basset, who happened to be on staycation this week. Faster than a speeding bullet, they jumped into action, driving me back to the park. One friend got behind the wheel while I pushed the car with the other. Let’s be honest: if it were between me and another person to push a car, I’d choose anyone over me anytime. Anyone over 12, at least. I am a self-proclaimed weakling. For the final stretch, I got behind the wheel while my very strong friends pushed. Thanks to their brute strength, my car was back on the road in no time.

When I first contacted them, my friends could have refused to help, telling me I’d have to get myself out of my own mess. In a situation like this, the Dutch say, “When you burn your butt, you need to sit on the blisters.” That’s a bit harsh, don’t you think? Still, I can’t disagree.

All’s well that ends well for me. I have promised Drs. Basset my best Dutch baked goods in thanks. Upon their first bite, I’m expecting they’ll say, “It’s like an angel is peeing on my tongue.” A true Dutch compliment couched in divine urine. I won’t forget Ms. Good Neighbour. as well Hopefully she won’t liken my baking to the taste of peeing angels, unless she too is Dutch, in which case I’ll take it as a compliment.