Decisions, decisions….

Person deciding on which path to take on the road

Dear Patient Followers:

Thank you for all your support after my last post, which wasn’t easy to write. It was hard to abandon you for as long as I did, but I wanted you to know I have not died. I was at home on my couch on a weekend pass from the hospice. Yesterday I had to decide whether I would remain at home or return to the hospice.

While I was at home, my lovely friend, K.. loaned me her mother’s walker, which I’ve used both in and out of the house. I still need J.’s help going up or down stairs, but can now walk short distances with the walker. I’ve also scored a generous friend’s deluxe toilet riser and a little stool for the bathtub. Yeah, old people stuff.

I’m not embarrassed to tell you about these physical supports because they’re helping me get up and move around on my own. I can’t believe I can’t push myself up from the toilet, but my decline in strength over the past few weeks has been profound.

This is what happens when anemia progresses and there is not enough oxygen to feed my muscles. I am weak because my hemoglobin is likely very low. I can’t tell you how low because I have not had my blood tested in some time. Without transfusions–which unfortunately will not make me feel better at this late stage in my illness–I will continue to get weaker. Nevertheless, I did leave the house today, and not just to move from hospice to home. That felt great.

Yesterday we had to decide whether I’d return to the hospice. The hospice was kind enough to hold my bed over the weekend. So J. and I talked. It felt better to be at home with my little family, and although I know the hospice has more supports on site, we both decided I’d prefer to be with my family right now.

If my situation changes, I will seek out the hospice again, and hope that they will have a spot there. (This hospice is small, with only 14 beds.) I will accept the risk that they will not have space for me if I want to return.

How do I ever know what the right decision is and what my needs will be today vs. a week from now? I don’t. That’s what makes decisions like these hard ones. But as it stands, being at home seems right, despite knowing my health could turn anytime. At home I can wake and sleep without interruption.

I don’t miss the middle-of-the-the-night hospice checks involving flashlights shining in my eyes, or the nurses who were a bit too chatty some days, forgetting that they were to be caring for me. Lovely people with poor boundaries. It is difficult to ask a kind but overly chatty nurse to leave my room.

So home it is and we’ll see how it goes. Our palliative home-care nurse is coming this afternoon to check in. I know I’ll feel more comfortable in my own bed. And you know I’ll keep you posted if my situation changes, or J. will if I can’t. Thanks for being tremendous supports to me during this difficult time.

 

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Brace yourselves for a bad news post

Magen David within heart, Jewish hospice symbol

I’ve been a little quiet lately, or at least quieter than normal. That’s because I’ve spent the week wondering whether I was dying.

I am writing you from one of our local hospices, where I was moved on Wednesday, after three days of sleeping day and night. I spent three days sleeping on the couch, then moved to bed and slept through the night. Three days of profound fatigue and a very sore throat.

Initially I thought it was the flu but J. called the palliative home care nurse, who suggested  I’d enter the hospice. I put my name in for a bed here and by that evening, we knew that a spot would be available the next morning. So after three days of sleeping day and night, on the morning of day 4, an ambulance transported me to my new home.

I will be honest with you: moving to a place I will be in until I die has been tough. It may be the right decision but it has been scary and overwhelming to move in. I don’t know how I’ve not died from the emotional upheaval of moving to a place like this, even though the care has been exemplary. J., bless her soul, has been sleeping on a cot by my side. She has been fed generously at mealtimes, the same meals as the residents, and is welcome to be here as much as she wants. And this place starts the day out with the best iced water around, and there’s nothing I like as much as a good cold glassa iced water. These folks know what dying people need; I couldn’t be in better hands.

After a few days of lazing around in my new bed, I’m questioning whether my admission was premature. I believe I am dying, and that it will happen sooner rather than later, but my death does not seem to be as imminent as it was when I was admitted. My mornings are fatigue and naps, but by noon I’m alert and even up to a visitor or two.

Late this afternoon, we spoke with the doctor. She heard my concerns and suggested the best of both worlds, for now at least: a day pass to see how I’d function in the community. If she takes me home, J. will be responsible for caring for me, but she seems up to the task. I am not incontinent, I do not need help with self care, and, although I am weak, I can make it to the washroom and fridge on my own. J. will need to feed me and do my laundry, but she’s been doing that for some time already. If my condition declines, I’ll return to the hospice pronto.

Blogging is low priority now. J. has access to my blog, and you will know if I die. But know that the end is near and, day passes or not, I imagine I will die in this spacious room with large windows and caring staff and great food. (If only our hospitals fed us so well! Two meals with bacon so far.)

I will be writing as long as I can. If I do not respond to your comments, I trust you will understand. I am grateful for your persistence and support. You have motivated me to keep going.

A night to remember and cherish

Plate of latke, salad, and bagel with lox and cream cheese along with brochure for cooking class

I try not to speak for others, but I daresay we all enjoyed ourselves at last night’s Jewish cooking class. Thanks to the we’ll-try-anything attitude of 14 special friends, and Judy’s powers of persuasion, the previously cancelled class ended up filled to overflowing with dear friends from all walks of our lives. They mingled and fumbled and helped one another to assemble rugalach and knishes, ending up with substantial overflow to bake up at home.

The instructor made a mean knish. Sure, the potential knish fillings he provided included bacon, but at least he acknowledged the irony. My conscience allowed me to add a few porky bits. (Any moral superiority implied in adding a few vs. a ton of bacon is questionable.) I didn’t ask, but I imagine the other two Jews present added bacon to theirs as well. J. added a lot more bacony goodness, and hers tasted better for it.

The instructor also demoed latke making, which we weren’t expecting, for good measure. Sure, Bubi would never have added garlic to her latkes, but I granted him creative license and choked that fried deliciousness down. We were there for tasty Jewish food, but more importantly, the company of good friends.

Could it have been a more perfect evening? When I looked around the room, I saw people having fun, enjoying one another, and glad to be there. I could not have asked for anything more.

But the wonders of the evening didn’t stop there. One friend secretly sewed me a gorgeous apron that all attendees signed. The inscriptions were beautiful, and J. had to wrest it from me at bedtime before I put it on over my pyjamas because of the greasy, floury mess I’d made. What a beautiful and thoughtful memory of the evening.

Another couple shared news of their long-awaited pregnancy, complete with ultrasound photo. I have been biting my tongue until it bleeds not to ask if there are any challah buns in the oven. Parents extraordinaire they will be.

Kudos to every person there, who showed up simply because it was important to us.

At the end of the class, the instructor pulled me aside to ask if I was happy with the outcome. I told him I was indeed, and explained that the class was especially important to me because I didn’t expect to live long enough to attend. He told me he was happy to be able to provide a distraction from my reality for at least a few hours.

A few hours?? How about the whole week leading up to the class when, after being so distressed over the cancellation, I learned J. had resurrected the evening with a little help from our friends? The joy I felt when J. described the immediate responses to the invitations? The friends who regretted they could not attend but offered to pay for a spot to ensure the class would happen? The excitement of anticipating everyone’s enjoyment of the evening, and creating memories for all?

The distraction is not over yet. We have a lot of baking left to do. Anyone want some porky potato knishes hot from the oven? I’m sure J. would be more than willing to share.

 

The elephant grew and grew until it didn’t fit in the room anymore

Picture of seated elephant taking up the bulk of the roomI’ve had an elephant named Leukemia accompanying me to every large social gathering for the past 6 years or so. I am inevitably preoccupied with who knows Leukemia, who doesn’t know, and when I’ll be asked a question that forces me to disclose Leukemia’s presence.

Over the past few months, Leukemia has been consumed by his bigger, more imposing cousin, Dying. Dying is clingier than Leukemia; wherever I go, he’s always by my side. It’s not a secret that Dying is there–you, my readers, are well aware–but not everyone I encounter knows. So when I arrive at a get together with unfamiliar people or those I haven’t seen for years, I’m on high alert. Who will ask the first question that will force me to introduce my imaginary friend?

Last Friday, we were invited to a lovely celebration for a friend who had been recently granted Canadian citizenship. We wouldn’t have missed it. I tried to leave Dying at home–this was our friend’s special night–but the elephant is clingy.

What I failed to consider was how emotional I’d find being at this gathering with Dying by my side. I’d be seeing a number of people I hadn’t seen in some time, only some of whom would know about Dying.

Soon after the initial greetings and congratulations, I became teary, which surprised me. I realized that I would not see many of the guests again after that night. Then came the awkward questions from the ones who did know Dying. “Are you still fostering dogs/doing yoga/working?” Some who knew about Dying avoided me altogether. I get that; who wants to talk about Dying at a party? Still, if you can see the elephant, I’d be grateful if you’d acknowledge him. It’s not like Dying is great company for me either.

Then my guardian angel appeared: the sister of the host, who, despite her rushing around laying out food, visited with J. and me briefly when we arrived. She greeted us with a big hug, and, in the process of offering us drinks, acknowledged what I was going through and expressed her sadness for us both. Her kindness couldn’t have been better timed, and more needed, in that moment. We were away from the group so my unbridled tears did not destroy the evening for everyone. She gave me a chance to be sad, which I’d been trying unsuccessfully to contain, and she shared her sadness too.

A while back, a palliative home care nurse told us how dying people’s worlds shrink as they become increasingly ill. She was right. I leave the house less, and, other than medical appointments, my calendar is sparse at best. No more yoga classes or PALS outings, rare social engagements, and lots more time at home sleeping. Social outings with unfamiliar people are simply too stressful now that Dying insists on joining me everywhere I go.

Congratulations to my dear friend and may he enjoy many happy years as a Canadian. J. and I were grateful to be included in his celebration. I do wish that Dying hadn’t insisted on crashing the party. Trust me, I’d turf him if I could.

Never say never again

Freshly baked rugelach, a Jewish rolled pastry

Monday was a tough day. I called to enrol an interested friend in the upcoming Jewish cooking class, only to learn the class had been cancelled for lack of enrolment. Then I was chastised for not signing my friend up earlier. Are there not 16 Jewish-food-obsessed people in this whole town? This class was important to me, not only because it was a Jewish theme, but because I’d set it as a goal to work, or shall I say “live”, toward.

I had been hesitant to enrol because I thought I’d be dead by that date. J. encouraged me to take the risk so I did. No wonder I was heartbroken when I received news of the cancellation. The bearer of bad news encouraged me to maintain my credit at the school rather than receiving a refund so I could take another class in the future. I insisted that a refund would be preferable, but appropriately withheld my rationale. You would have been proud of me.

As I moped around the house over the following few days, my much better half–perhaps we should call her Jane Bond today?–started scheming. Guided by one of her favourite mantras–it never hurts to ask nicely–she took action. Unbeknownst to me, she called the cooking school and asked whether they would reinstate the class if she could muster up sufficient enrolment. Then she emailed a number of our foodiest friends to let them know how important this class was to me, and asked if they’d consider signing up. The response was overwhelming. Within 5 minutes she had 7 definites. By day’s end, she had 19 takers for 16 spots. Sorry to those who were too late to make the cut but you gotta be quick with my girl.

Late yesterday afternoon, J. told me what she’d been up to. I’d noticed that her phone had been pinging off the hook with texts, and she seemed in especially good humour as the day progressed. A more astute person than me would have sensed that something was up.

In the late afternoon, J. let me in on the secret. She told me that friends had responded immediately and excitedly and that already she had enough people to hold the class. For the rest of the day, she kept me in the loop as the class filled with our friends. My tears took a sharp turn from sad to happy.

Kudos to J. for making this happen. When an obstacle arises, I lay down and die (pun intended) while she rises to the challenge. As the class enrolment shows, J. can be very persuasive.

And kudos to our incredible community of support, who jump whenever called into action. J. shared how important this cooking class was to me, and to us, and our friends wanted to make that happen. What a precious gift.

I am so grateful and excited, and not just because I can almost taste the knishes and rugelach we’ll be making. Sure, gravlax is Swedish–I imagine our teacher is not Jewish–but it’s a close enough facsimile to lox. The night should be a spectacular. I hope that everyone who attends will enjoy both the food and the memories we create together.

 

 

Desperately seeking eulogy, or maybe not

Woman in jeans holding crotch to stop self from peeing

Remember how the rabbi tasked me 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.

TMI Guidelines for the Dying Person

yoga class women cross legged eyes closed

Every Sunday morning for the past 10+ years, I have been going to yoga. I have to be out of town or deathly ill to miss a class. Over the years, a community has developed in this class, people who know each other if not by name then by face, who greet one another and struggle together.

This past Sunday, despite how important this class is to me, I almost bailed. I had a low-grade fever, I was physically exhausted, and I simply wasn’t up to it. But I went anyhow because I’m rigid. Every pose felt hard, and I had to modify occasionally to prevent bruising, but I muddled through. I can’t say I felt invigorated after the class–any physical activity is exhausting these days–but I was glad I went.

After class, one of the women who has been part of the Sunday community for years, who left to have a baby and recently returned, approached me as class ended to ask me how I was. It was an innocent question asked out of kindness. Although we’d chatted often over the years, I had never disclosed my health challenges to her.

Maybe because the class had been hard for me, maybe because I was feeling sick, maybe because my declining health is preoccupying me, I responded honestly. I said, “I’m palliative and it’s been a struggle lately.” What a way to kill the calming effects of that yoga class. She responded appropriately and kindly, if with shock. When someone asks, “How are you?” how often is “I’m dying” the answer? She said she would pray for me, and she meant it.

I could have just said, “I’m fine.” Was it fair for me to dump my reality on her? She doesn’t know me well, and she was not expecting that. But if I want support from people, even those I don’t know so well, I need to let them in. I didn’t belabour my point and, as is my nature, I quickly changed the topic to her baby, but I doubt that’s what she was thinking about.

Within minutes, another kind woman from class asked me how I was as I left the room. By this point, I was a little overwhelmed so I told her I was unwell but couldn’t talk about it. She accepted that, but we crossed paths again as we exited so I called to her. I apologized for mishandling her well-meaning question and told her that I was dying as well. She too was warm and supportive, but because she knew I’d had leukemia, she was less surprised.

What qualifies as too much information when you’re dying? I’ve decided that nothing does. I’m not going to start telling strangers about my impending death, but to tell people I know that I’m fine when I’m dying feels unsettling. Isolating.

I take comfort in knowing that there are two more people in Sunday’s class who know of my declining health. When I stop coming to class altogether, they’ll know why I’m absent. Who knows? Maybe they’ll even miss me. More likely, they’ll be glad my spot by the wall is finally vacant. I’ve been occupying prime real estate in that class for years.

Even a realist believes in miracles

Israelites leaving Egypt through parting of Red Sea

Tonight Jews the world over will be eating matzah, bitter herbs, and greens dipped in salt water and retelling the story of the Jews’ exodus from Egypt. How did that Red Sea magically part? And how is it that in 54 years, I’ve never noticed the hiding the afikomen, that special piece of matzah, for the kids to find?

While we Jews celebrate our freedom, Christians will be celebrating the miracle of the abundance of chocolate eggs. (That is what Easter is all about, isn’t it? The annual chocolate egg hunt?) The kids will be wondering whether the Easter bunny stole the eggs from an unknowing chicken (rabbits lay bunnies, not eggs), how they too were hidden without anybody noticing, and, this year in Calgary, whether they’ll be able to locate them underneath several inches of fresh snow. Dress well for the hunt, wee ones, it’s cold out there.

I will admit I am somewhat distracted from the holiday festivities this year. Rather than focussing on the miracles of the season, I am focussed on the miracle that I am alive and feeling fairly well. I have a roof over my head, food in my fridge, a loving partner, a dog who adores me when I feed her, and friends surrounding me. I couldn’t ask for more.

But I am also a realist. I don’t believe a miracle will alter what happens to me over the next year. No magic potions, no oddball interventions, no flying down to Mexico for the unvalidated treatment that preys on those who are betting on life. I also don’t believe a doctor will discover a cure for my condition just in time for me. If that were going to happen, it would have already.

I have not consulted a naturopath or a witch doctor or an airy fairy shamanic healer. I don’t think chiropractic care or reiki can halt the progress of my illness in its tracks. Others may pursue those alternative interventions, and more power to them for so doing. I’m solidly a Western medicine girl. My Western-trained doctors have kept me alive this long, and I’m going to trust them to do whatever they can for as long as they can to keep me well.

Please don’t be offended if I politely decline the miracle intervention you suggest. You want me to try those magic mushrooms (not the psychedelic kind) that saved that guy with advanced cancer? They sound amazing, but I’ll pass. I don’t believe they’d help me.

Don’t cry for me, Argentina. I’m oddly at peace with what’s going to happen to me. Knowing I have no control over my impending death is freeing, and easier than hoping for a miracle cure. In the meantime, I plan to treat my body with respect, barring the list of unhealthy foods I plan to eat before I die (Big Mac anyone?), to move my body as much as I can, and to spend time doing things I enjoy with people I love. My goal is more happy than sad days. If I can keep Saddy on side, I’ll be fine.

Happy Holidays! May you all have many personal miracles to celebrate.

The Five-Year Rule: Absence makes the heart grow indifferent

If you know anything about me, you know that I love structure. I crave rules and boundaries and knowing where I (and others) stand. Structure allows me to get through my day and my month and my life. In some ways, dying has helped me let go of some boundaries, while other boundaries I have firmed up.

For example, because my medical needs are so high of late, some days I have to skip yoga. In the past, skipping yoga would have been a near-death experience for me, but I am getting better at letting such intrusions roll off my back. That may be a slight overstatement. Maybe they’re rolling off my back, but my back is like a washboard: each bump, I say, “I wish I could go. I resent being sick. I hate losing control over my day-to-day life.” By the time the annoyance reaches the drop off point at my tailbone, I am resigned to my mediocre home yoga practice.

Then there are those rules I’ve firmed up. Curiously, once word got out that I was dying, I started hearing from long-lost souls eager to meet. Perhaps they wanted to rekindle our friendship, or maybe they wanted to say their good byes. This phenomenon, the return of the disappeared, has led to some difficult interactions and tough decisions, but only for them, not me. I know where I stand in these cases.

At the risk of offending some, (or many, as I often do), I have no plans to make time for people who have already absented themselves from my life for a significant period of time. Your definition of this time period may differ from mine, but I arbitrarily picked 5 years, figuring that was more than fair. If I haven’t seen you in the past five years, I’m not hanging out with you in my final year. However hard you try, you won’t be able to score tickets to my Farewell Tour. The people I will spend time with are those who have been in my life through thick and thin; they’re the ones I didn’t have to tell I was dying for them to surface. I am blessed with many less-than-half-decaders in my life; they are my priority now.

Believe it or not, I feel absolutely no guilt applying this rule far and wide. At the risk of further offending you, I don’t care if I hurt your feelings by rejecting your eleventh-hour advances. You missed your chance, buddy. I’m a decent person and I’m fun to be around, despite my looming death. The people I want in my life have met and exceeded expectations thus far, even with my death approaching. If you didn’t appreciate my finer attributes before, I don’t care that you’ll never experience the pleasure of my company again.

All requests are considered on a case-by-case basis. That’s why some may be permitted a 10-year lapse, while others’ absenteeism cutoff is 2 years or 6 months or even yesterday. You’d have to have really messed up for the Yesterday Rule to apply, though. Thus far it has not been employed.

So no need to fret: if you’re on the A List now, you’ll most likely remain there for the duration. Unless you really blow it, but there’s not much time left for that.

Out of sight out of mind printed on top of picture of shoreline

Bowling is always the answer.

Glow in the dark bowling lanes

My first stop on the Farewell Tour was Toronto, where J. and I flew to visit with my family. Relatives bought tickets for the show, flying in from near and far so we could spend time together, despite the fact that we hadn’t been able to give them much lead time.

“Farewell Tour” may sound foreboding, but really it’s not. Despite what you might think, it does not involve sitting around and weeping about my impending death, although I can understand why your mind would go there. Rather, this tour provides an opportunity to catch up with the people that matter to me so I can tell them as much.

There has been a lot of Jewish brunch food involved. I made an advance request for cheese blintzes, whole smoked fish, and chopped liver, which awaited me upon my arrival. There were even a few other items that other relatives might enjoy eating. That’s when I learned this tour was not all about me, and I was okay with that.

Even I can’t spend a whole weekend eating Jewish brunch food. In fact, I’ve been oddly disinterested in food this past while. So we had to come up with a different plan. J.’s creative inspiration led us to the idea of bowling together. My local administrative assistant offered to book two lanes for an hour of 5-pin bowling, and everyone readily, sportingly, agreed to attend.

Bowler getting ready to let go of ballThe proprietors of the bowling alley were gruff initially but we let that go; nothing would interfere with our happy hour. It turns out that bowling is the great equalizer (unless you have friends who bowl in a competitive league). None of us had set foot in a bowling alley in years. Except for J.’s magnificent performance–once an athlete, always an athlete–the rest of us fumbled our way through one game. Even the grande dame (or is that la grand-mère) joined us and, although she chose not to shame anyone by outplaying us all, she closely monitored the scorekeeping to ensure there was no cheating.

I can’t speak for the others, but I had a great time, athletic humiliation aside. We all had a chance to be together and enjoy one another’s company for a full hour. Pictures were taken and there were no winners (maybe there was one, who shall remain nameless, as she always has) and no losers. Today my poor left buttock may be unexpectedly sore from all that lunging, but I consider that pain a good reminder of the special day too.

Any Farewell Tour is not all fun and games, however; it also has its sad moments. We enjoyed our hour of frivolity, but the reason for this get together was always on my mind. Over the weekend together, heartrending sentiments were shared, hugs were exchanged, and tears were shed. Because we are spread so far and wide, I may not see some of these lovely people again, except perhaps over Skype.

In the meantime, I will hold onto the memories of our time together when I am missing my people, and trust they will do the same when the time comes to miss me. Sometimes memories are all we have. Hopefully an afternoon of bowling has created some happy ones. That and those delicious blintzes.