Field trips are not about place, but about time and memories

Hand holding chocolate-vanilla swirl ice cream cone

I’ve been relentless lately. Because my time on this earth is limited, I’ve been demanding J. take me on daily outings. These field trips are as much about getting me out of the house as they are opportunities to reminisce.

Earlier this week, we went to see the pandas at the zoo, and topped that off with a chocolate-vanilla swirl ice-cream cone. It was toss up between the animals and the ice cream. We’ve seen pandas before, and they were just as charming. And that ice cream cone? It tasted identical to the cones from the ice-cream truck that waited outside our school in the spring for eager child consumers like me.

The next day, we couldn’t quite make it to Israel so we did the next best thing: we went to lunch at a great middle eastern restaurant and ordered their falafel plate. We both agreed that the food didn’t compare to the Israeli fare we’d eaten, but it still sparked memories from our trip, which was only six months ago. I was going to live forever back then. A lot has changed in six months.

Then came Friday evening, the beginning of the May long weekend. I dragged J. out for a small hot-fudge sundae, which I will always associate with my running days. Soon after I moved to Calgary, my running mates topped off their long runs with a trip to the Dairy Queen. (Faulty logic, now that I think of it.) I’ve never looked back.

While we were eating, the sun glinted off my pearly whites, one of which J. noticed was not so pearly or white. This tooth had been sensitive on and off but I hadn’t considered a more serious problem. No time for reminiscing; I went into full panic.

By morning, the discolouration had worsened, so I did what any self-respecting dying person would do: I took measures to ensure I would not die of a tooth abscess. I called the hospital, spoke to the hematologist on call, and begged for antibiotics to tide me over the weekend. The kind doctor was very obliging. After a quick visit to the cancer centre (it would have been quicker had she not deemed me in need of platelets), I returned home and left a desperate message for my dentist.

I could tell you this experience had me reminiscing about my last root canal, which was botched so badly I ended up in the hospital under 24-hour watch. Thanks to me, the dentist landed an unprofessional conduct charge. Not my fondest memory. Next.

I will have to deal with this tooth pronto, but then I hope I can get right back to having fun. In a few weeks, we’ll be heading to London (or its closest facsimile, a local historical park), for high tea with scones and mini sandwiches. I’m also dying for dim sum. How better to recall long-ago outings in Toronto’s Chinatown? I can almost taste that warm sticky rice wrapped in a lotus leaf.

Funny how each of these memories has a food focus. (Sorry pandas, you were secondary to the ice cream.) That’s me in a nutshell, always planning my next indulgence. Hey, when’s the last time you shelled a nut? Every Passover when I was growing up….

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Finally, a reason to believe in a Higher Power

I’ve had a fraught relationship with God for many years now. I want to believe in The Guy (or Gal) but it’s hard not to want to blame Him for my predicament. My polycythemia, a disease of older Jewish men, was diagnosed at 36. At age 54, I’ve had this life-threatening illness hanging over me for a third of my adult life.

Twelve years later leukemia revealed itself, followed by my near-death experience. The second diagnosis compounded my health anxiety, especially when my then-hematologist told me that the effective medications for my type of leukemia would fail because of my preexisting polycythemia. I ditched him immediately so I wouldn’t die prematurely of anxiety.

I never wanted to believe that any God I know would want to put me through a long, torturous trial like this. Sure, I could chalk it up to bad luck, but couldn’t He have chosen someone with the emotional resources to handle such challenges? I am not that person.

As I near death, I’m trying to open my mind to God. I’ve been meeting with the rabbi, although we haven’t talked about the Big Guy much, if at all. I do take comfort from the rabbi, who clearly has a better connection to the heavens than I do. He’s got to believe in The Guy or he wouldn’t have chosen this profession that suits him so well. He’s proven himself kind and compassionate and he’s supporting me gently through my impending death.

Maybe I’m a stereotype, the kind of person who seeks God as her days are numbered. I wouldn’t put it past me, opportunist that I am.

But over the past few weeks, He’s finally given me a sign that He’s watching and he cares. I’m talking about the annual hockey pool. Every year, J. selects a team for me and a different team for herself. I would have no idea who to choose, so I leave it up to her. Through the playoffs, we skip the hockey, but check our pool standings diligently every morning.

In past years, my players have started out near the top of the standings, but by the end I’m close to the bottom. And every year, for as long as I’ve been participating, one woman wins the pool by a long shot. She must pay for insider information.

The playoffs are three rounds in and not only am I still standing, I’m leading Ms. Insider by 6 points. Barring an unforeseen disaster, I am on track to win the pool this year. Not only that, I’ve left J. in the dust: she is currently 48 points behind me.

You do see the irony here, don’t you? I say I’m beating J., when in fact she’s the one who chose both her team and mine. Had she decided to switch our teams between us, she would be the one eliminating my chances and testing Ms. Insider’s invincibility. Too late for that, honey. It’s Annie for the win.

Although He may have beaten me down for many years now, I am grateful that in this, my final months, God has seen fit to allow me a victory, however unearned. I’ve finally found my compassionate God. Thank heavens for small mercies.

Picture of ice with four hockey players, inlaid "Stanley Cup Playoffs"

 

A moratorium on my role as a teaching case

Monkey wielding large needle says: "Relax, I've practiced on hundreds of grapefruits."

True confession: J. and I were both a little freaked out by the neck swelling. It was an odd, new symptom. I’m brimming with odd, new symptoms these days and often I can’t help but worry about what the changes might mean.

But after the nurse’s telephone reassurance that I would live to see another day, I thought my anxiety had dissipated. That’s until I tried to sleep and, unexpectedly, stared at the ceiling for hours whilst concurrently coughing up a lung. “Maybe I have a simple chest cold, ” I tried to tell myself while counting a lot of sheep.

By the time we saw Dr. Blood Lite yesterday, other than looking like a no-neck gym rat, and losing that lung, I felt fine. The doctor’s physical exam revealed nothing of concern; an unhappy lymph node is small potatoes to a hematologist. He wondered if I had a throat infection, and my nodes wanted in on the party, so he started me on antibiotics.

Just to be sure, though, he sent me for a neck CT scan. And guess who got the newbie? I’m not sure Ms. First Day on the Job had ever inserted an IV before, but the contrast dye required one. So I told Ms. FDOTJ what I’ve been telling any medical professional who wields a needle in my vicinity of late: I HAVE NO PLATELETS AND I BRUISE MORE EASILY THAN AN OVERRIPE OKANAGAN PEACH, SO DON’T EVEN THINK OF USING ME AS A PINCUSHION.

This young lass must have been so nervous that she did not hear (or understand?) a word I had said. She poked once, searched around a little. First mistake? If at first you don’t succeed, don’t try, try, try again on peachy me. Strike 1. Enter her supervisor, who orally guided her through a second stab. Strike 2.

I was gauzed and taped but no one placed pressure on the wounds. I didn’t have a hand free, and neither professional stepped in. News flash: no pressure post poke results in greater bruising. Needless to say, today my arm looks like a toddler took a black marker to it.

Then the supervisor said, “How about our trying the other arm?” How should I have responded at that point? I knew the procedure needed to be done, yet all I could see was a strikeout. I could have said “Over my almost-dead body!” but I stayed silent, for fear I might share my deepest (read: most hostile) feelings.

After 18 years as a teaching case, I’m dying, and I’m done with students. No more palpating my ginormous spleen, no more missed veins, no more virgin hands on this body. Students need to learn–I know because I was one once–but they’ll have to find another subject to hone their skills on.

I’m still kicking myself for not speaking up. Sure, I’m angry with how I was mishandled, but I’m angrier at myself for staying silent. Since when do I not assert myself? No one else is going to do it for me.

Please learn from my mistakes. Speak up and see what happens. Despite what your psychic may suggest, no one can read your mind.

Even when things are going well, thoughts of dying sneak in.

Picture of new Calgary Central Library

So many wonderful initiatives are happening on my behalf, I don’t know where to start. Supercousin has already confirmed 24 family and friends in Toronto, and many more who wished they could donate but are unable, for the June 16 Toronto blood donor clinic in my honour.

Now Superfriend in Calgary has stepped in to arrange for a donor clinic here on the same day. She has already confirmed 10 people, many of whom I don’t even know, to fill the 15 chairs she’s holding. Contact me if you’re in Calgary and you have it in you to give; I’ll connect you with Superfriend. I’m sure we can fill those chairs. Those who can’t donate for whatever reason have offered moral and culinary support.

As if that’s not enough, over the past few months, my Superkin have been arranging another special honour. You know what a library nerd I am, how I worked in libraries for years and how I still love to hang out in the stacks. Every so often I even reshelve a book that’s out of place, for old time’s sake.

On November 1, 2018, Calgary will be opening its architecturally stunning new downtown library. As a fundraiser, people can buy windows for inscription. So my Superkin arranged to buy me a window, which will be inscribed for the next 25 years with my name and a few descriptive words of J.’s choosing.

But Superkins’ donations were so generous that they quickly purchased one window, and, with the overflow, decided to purchase a second window for J. Truly, she deserves a window more than me,. She’s been by my side through years of illness, caring for me without complaint, patiently adjusting to my slowing pace, and never abandoning ship. I was overjoyed to come up with her inscription, which not surprisingly ends with, “Never an overdue fine.”

I am trying to see only the joy in all of this, but there is something hanging over me: I’m going to die, and it may happen before any of these events transpire. It didn’t help that I woke up with a visible lump on my neck this morning, perhaps a lymph node saying hello. My mind immediately went to dying, as it tends to do. J. called the cancer centre and the nurse told us to hang loose until we see Dr. Blood Lite tomorrow. No need to contact the funeral home after all.

Since I’ve learned that I am palliative, I’ve tried to keep living my life, planning for events down the road as if I would be there to participate. No one has given me an exact end date, and even if I knew the date, wouldn’t I want to keep living until I die?

There’s a Jewish cooking class being offered at the end of May, and I signed up, after some hesitation. How often do you think Jewish cooking classes are offered in Calgary? Never. Signing up for the class gave me a goal. Then there’s the blood donor clinic in mid-June, and the library opening in mid-November.

Hey, do you think they’d let us don hard hats so we could view our library windows before the official opening? I might just have to inquire.

 

Desperately seeking eulogy, or maybe not

Woman in jeans holding crotch to stop self from peeing

Remember how the rabbi tasked with writing my own eulogy? He wasn’t expecting me to deliver it at my funeral–that would pose one obvious logistical problem–but thought my input could guide him. Some have suggested he was trying to get me to do his work for him but I disagree. He was simply exercising his due diligence. How better to get to know me than by soliciting my input on the eulogy?

I like this rabbi’s philosophy. He prefers to deliver the eulogy because, by so doing, he is allowing those attending the funeral to focus on mourning. If I didn’t like him or trust him so much, I might have trouble with his assuming this task, but I think he’s the perfect man for the job.

That being said, I’m sure many of you are dying to eulogize me. I’m sure you all have a funny story or ten that I’ve neglected to share in my blog, where I’ve been incredibly difficult or my outside voice has said something outrageously inappropriate. Everyone has an Annie story.

Also, I don’t want to be idealized after my death as so many are; I want you to retain a balanced picture of me for eternity. I’m sure your words would highlight many areas where the rabbi would appropriately fear to tread.

I was texting with a dear longtime friend the other day who kindly reminded me of an incident soon after we’d met. I had invited a few friends to my home for a social evening. (Once upon a time, I socialized.) I recall hours of raucous frivolity. I laughed so hard that, late in the evening, I ended up wetting my pants.

Remember I recently disclosed that I bleed a little when I cry? Well, it turns out, on very rare occasions, I also pee a little when I laugh. My dear friend has never let me forget this incident, and with good reason. He is the elephant who never forgets.

As we were texting about this special memory, I mistyped, “I understand your vivid recollection of the pee incident. That’s why I’m now asking you to do my eulogy.” But I meant to write “not” instead of “now”. My friend received this text while he was in a work meeting, which elicited tears and a barrage of texts about how we’d have to meet to discuss what he’d say, and whether he’d even be able to speak without weeping.

After several perplexing exchanges–I didn’t ask the elephant to do my eulogy, did I?–I reviewed my texts and realized my grave error. My correction was swift and firm. No, dear friend, you willl never be tasked with my eulogy because your impulse control is poorer than mine (if that is indeed possible)! Plus, I’ve herein already shared your favourite memory, the pee story.

For the rest of you lining up to speak on my behalf, thank you for your interest but the position has been filled. No hard feelings. I’d prefer we stick with someone who does not know me well enough to humiliate me completely in front of a crowd. As you well know, I am perfectly competent of doing that myself.

 

The mystery of the angels in my midst

Patti Labelle quote: You don't have to be an angel, you just have to be someone who can give

When I think of angels, I often think of the heavenly ones with gauzy wings and glowing halos. Kind of like Tinkerbell. Recently, however, I have come to realize that there are many angels here on earth. Don’t worry, I’m not getting all religious on you; I’m making an observation based on personal experience.

Angels have been jumping out of the woodwork recently. There are the long lost friends who have heard I am dying and are reaching out with loving letters of comfort and support.They have shared happy memories of our time together and reminded me of what our relationship has meant to them. Others who live closer by are sharing similar sentiments with me face to face. It’s uplifting to learn I am loved before I die.

I can’t imagine it is easy to communicate these feelings, whether in person or in writing, but these friends are pushing through the discomfort to share frankly and honestly. Knowing that I have had a positive impact on their lives, or that I have brought them joy, or provided support when they’ve needed it–these acknowledgements make me feel my life has had value.

Then there are the doers. The deliverers of lasagna and grapefruit and other various and sundry delicacies, the visitors who drop in at the cancer centre on short notice to pass the time of a transfusion, and the dog lovers who ensure Jelly is cared for if we are waylaid or slip out of town for the day. Their importance cannot be understated.

But there is one particular angel, hereafter named Supercousin, who takes the chocolate cake this week. Supercousin has arranged a Canadian Blood Services clinic in my honour in Toronto on Saturday, June 16. She has initiated this clinic  because she, like many others, feels helpless from afar and wants to do something tangible to show that she cares. She has announced the clinic to close friends and family, and the response has been swift and magnificent. Already 20 donors have stepped up, plus several others who unfortunately are ineligible to donate at this time. Through this venture, Supercousin is raising awareness of the critical need for blood donations. I know I am using more than my fair share of blood products of late, so any efforts to replenish the stocks I deplete can only help others.

If you happen to live in Toronto and would like to donate at this clinic, let me know and I will connect you with my awe-inspiring Supercousin. (To reach me, you can comment on the blog, text, or email me.) If you do not live in Toronto, but would still like to donate, let me know. Maybe a group of us can crash the Calgary clinic (or wherever else you live) while the scheduled Toronto clinic is underway. We may not be able to add to the official Toronto-clinic tally, but I have a feeling the overflow of blood products will find good homes.

I’d love to be in Toronto June 16 to cheer these generous donors on, but my horoscope stresses that travel is out. You can be sure I’ll be there in spirit, however, or Skype, or maybe even FaceTime, assuming a young person can show me how.

Fatigue and insomnia do not good bedfellows make

baby yawning with eyes closed

Sleep has been hard to come by these days. Soon after my final deadline was moved up, I started spending a good portion of the night stewing rather than snoring. I’d awaken in the middle of the night and take hours to fall back to sleep. My mind was consumed with thoughts of death.

Lack of sleep is not good for me, or for anyone, for that matter. When I’m exhausted, I’m an emotional wreck, and you know how crying makes me bleed. Chronic exhaustion affects all aspects of my functioning during the day. My concentration is shot, my balance is off, and I become a danger to myself. J. wisely hides my car keys, as she should.

We psychologists are stoic ones, hesitating to ask for help unless we really need it. Insomnia? No problem. I know how to manage that, as I’ve proven through past sleep disruptions.

Through this most recent upheaval, I kept to my usual wake-sleep schedule, I tried not to nap unless my body demanded it, and I maintained my usual bedtime rituals to ready my body for bed, i.e., completing my bathroom routine (yes, flossing included), taking my bedtime pills, and finally reading in bed until I was drowsy. Once lights were out, or if I woke during the night, I shifted focus to my breath, which often helps me fall asleep.

Despite my efforts, nothing was working. Out of desperation, I did something I never thought I’d do: I asked for help. Pharmaceutical help. My medical team obliged without hesitation. Within minutes, I had a prescription for a highly addictive anti-anxiety medication awaiting me at my local pharmacy. I requested the lowest dose possible, but I was advised to allow myself to use what I needed to benefit me.

I have taken one of these pills every night since they were prescribed, and on one occasion, with great hesitation, two pills. Some nights the medication is more effective than others. I was concerned I might feel hung over in the mornings, but my quality of sleep has improved greatly and I wake up feeling as refreshed as a chronically fatigued person can feel.

I realize I run the risk of becoming addicted to these pills, but this point in my life, does that really matter? So I am doing something I never thought I would do: relying on medication to help me sleep. And I’m trying to tell you without feeling embarrassed about it. If you were in my shoes, I know I wouldn’t judge you. Why am I always so much harder on myself? Maybe it’s time to give that up.

The pills are not a panacea, however. My sleep is still poor some nights, and even after a good sleep, I’m still fatigued, especially if I’m anemic. After a great sleep on the weekend, I needed a nap by 11 a.m. Countering the insomnia has not eliminated the fatigue; it has simply eased it until my next red-blood-cell transfusion.

I am scheduled for two units of little reds tomorrow. I envision an excellent sleep Tuesday night, and a perky day, or maybe even a week or two following. And my pharmaceutically improved sleep can only help. Now, if I could just take those little pills without shame….

 

My Last Suppers, and Lunches, and Breakfasts

I think I clarified in my last post that I will not be consuming any trifle before I die. But dying does open the door for a host of long-neglected culinary indulgences. For an eternity, as you know, sodium has been my nemesis. I have been on a sodium-restricted diet since 2013, with occasional lapses when I venture out for a meal like a normal person.

With my death sentence, all food restrictions have flown out the window. A little sodium isn’t going to kill me now; my failing bone marrow is taking care of that. I dare say that my burgeoning baby bump may be surrounded by a fair bit of fluid due to my recent increase in sodium consumption. It turns out all the foods I want to consume with abandon before I die are all salt bombs. Pizza, dim sum, Thai food, grilled cheese with bacon, anything that actually has some salt flavour. You may have some suggestions for me. I’m listening.

You can recall I recently tackled the Golden Arches, to my deep disappointment–darn that excess special sauce–but I have had many more tasty indulgences since. Why, just yesterday a dear friend treated me to a lovely Thai lunch. I approached the meal cautiously, ordering vegetarian salad rolls and coconut rice, but I thoroughly enjoyed every bite. My friend’s Pad Thai was to die for, but I’m taking small steps.

Forget that; I haven’t time for small steps. I’m going to eat every previously banned food between now and my end. If only my appetite weren’t suppressed by my spleen’s pressing on my stomach, and by the progression of the illness itself. I’m eating, but not enjoying the food as much as I might have in the past. Sadly, eating to my heart’s content gives me heartburn. Hunger pangs are largely absent. I know, I don’t believe it either.

Then it hit me how selfish I am to indulge in relentless sodium-laden meals before I die. There are grave consequences of my doing so, especially to my pallbearers. How much extra weight will they have to lug around because of my overindulgence in long-forbidden foods? My nearest and dearest are getting older. Many of them have back or hip or other joint injuries. Will my excess necessitate orthopedic surgery?

Hopefully not. Pallbearers these days often aren’t tasked with the physical labour they once were. Now there are wheelie carts to move the coffin and suspension systems to lower the casket (and whatever ginormous body lies within) into the ground. (Let’s assume I’m not the only one trying to move through my long list of Last Suppers.)

So I will continue to work through my coveted food list, hoping I reach its end before I reach my end. Truth is, I can only eat so much at a time, and thus far my weight has barely budged. I don’t envision my BMI reaching the obese, or even the overweight, range before I die, although stranger things have happened. Even if I do balloon, I’ll rest assured that advances in graveside services will prevent serious injury to others. If you decline the request to be my pallbearer, I vow no hard feelings. I’ll be dead by then.

Pallbearers pushing coffin on wheelie cart

Death by trifle

Berry trifle in a large bowl

Thanks to all of you who have provided suggestions for my failed eulogy. You have all been much too kind. Perhaps someone would like to assume this task for me altogether? I am finding myself uncharacteristically paralyzed by my impending deadline.

Plus, I’ve been too busy with death preparations to eulogize. Last week, J. and I met with the palliative home care nurse, for one.  She arrived at our home just as a challah was coming out of the oven and, between her sighs over buttered bites of warm bread, we chatted about the heaviest of topics.

Nurse End-of-Life was lovely, personable, and straight forward. She provided a wealth of information about supports within the health care system for people just like me, and she answered many of the questions a dying person might have. We discussed how and where I might die, and how palliative care can help as I near death. I have always stressed that J. must not assume my nursing care once I am unable to care for myself.

There’s the question of dying at home vs. in a hospice. I don’t know where I’d like to be; I don’t think I’ll know until the end is nearer. I hope I will be well enough to make that decision with J. at that time.

Although we may visit hospices to get familiar with them, neither of us feel a need. Jelly and I had regular PALS visits at a hospice, which provided enough exposure for me. Through my volunteering, I had ample opportunity to witness the peaceful, warm environment for patients and families. Although this hospice is a lovely place with kind, attentive staff, I personally would not choose to die there because each Wednesday afternoon they hold a tea where they served trifle. I hate trifle. If a hospice is in my future, I’m hoping for one with tastier tea time offerings. Also, and perhaps more importantly, I would feel self-conscious dying in a place where residents and staff knew me previously as a volunteer.

We also discussed how people with hematological illnesses die. I’ve managed to avoid seeking this information, although deep down I know. According to Nurse End-of-Life, hematology patients don’t spend much time in palliative care because their deaths are often quick and unexpected.

J. and I had very different reactions to this meeting. J. was eager for the knowledge, and felt many of her questions were answered. I, on the other hand, was completely overwhelmed by the frankness of the discussion. Not surprisingly, my mood took a nosedive, and it hasn’t yet recovered.

Thus far, I’ve avoided asking the hardest of questions. I want to gather information as I need it, but not before. I’m torn between wanting to know the truth and wanting to avoid it for as long as I can. This meeting forced me to consider what might happen to me and my mind has had trouble thinking of anything but death since.

Time to research the teatime offerings at other hospices. That would help to distract me from my death, and I may be pleasantly surprised that not every hospice serves trifle. Thinking about better baked goods is bound to cheer me up. I’m sure of it.

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.