Epilogue

Annie had been after me to write a guest post for years and I had always declined. She said we were “muddling through leukaemia” together.  Which is true.  But this blog was HERS.  People wanted to hear from her; to get her wisdom; to be comforted by her words and insight; to be challenged about how they viewed the world.  She taught us all so much about strength and courage, compassion and diversity, right and wrong, living and dying.  She made us laugh and cry, sometimes in the same sentence.

Annie died in hospice yesterday morning.  She wasn’t in pain and was comfortable right to the end.   Despite her earlier misgivings about being in hospice, this time she knew it was where she needed to be.  The amazing staff made her feel safe and eased her mind, which is the most precious gift, both of us could have received.

Over the past few weeks we had daily chats about her life and what her legacy would be.  Her wondering wasn’t because of narcism.  Rather it was because she wanted to know that she made a difference.  That she helped people.  It wasn’t about feeding her own ego.  It was about her overwhelming desire to take care of people.  She actually apologised last week for “abandoning her followers”.  Yes, those were her words.  A true caretaker of hearts and souls until the end.

In keeping with Annie’s strict rule of 500 words or less, I offer this as her legacy.  She will be remembered for her kindness, warmth, and generosity, both of time and money.  She had an amazing ability to make people feel important and that she was truly listening to them. Annie showed us how to touch people’s lives and to make the most of every day.  She reminded us that life is short and precious.  She exemplified the tenet “it’s better to give, than take”.

She had a brilliant mind and made people laugh, often and hard.  She taught us to be honest but never mean or cruel.  She was reliable and always put others before herself.  She was a good friend.  And a great baker.  She set the bar on what it means to be a good person. She inspired us to be brave, strong, and kind.

Gone but never forgotten,  I hope you will continue to be inspired by Anne’s legacy.  I know she inspired me every day to be a better person.   I hope you got as much from Annie’s blog as she did.  Now that would make her smile.

Thank you for all your love and support these past 4 years.

xo  J

Annie in a library (where else would she be?) in Vienna.

 

 

 

 

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Visiting a dying person: It’s not you, it’s me

man struggling in water

As I’ve written recently, my strength and mobility have declined sharply in recent weeks. This decline has rendered me housebound, although I am working on that. The walker has helped, as will the wheelchair we hope to borrow through palliative home-care services. J. is willing walk the dog with me in the wheelchair–sounds like quite the workout to me–which will allow me to leave the house without overexerting myself. We are trying to think of other ways I can get out of the house. As summer is now in full swing, it is hard to be stuck at home.

The other problem is that my time at home is spent primarily watching television and sleeping. Would I feel more alert if I had more to occupy my mind? Using the computer is still a challenge. Typing is still difficult, as is surfing the net because my fingers still jump around randomly. I’m more restricted in what I can do. I don’t read much, except for the newspaper or the odd magazine. I’ve lost the attention span that a novel would require.  Trust me, I’m sick of mindless reading and TV. The distractions have lost their appeal.

Since I am mostly homebound, you’d think I’d want people coming to visit, but, surprisingly, I’m finding I don’t. The odd person has dropped by, and I did ask the rabbi to swing by before he heads off on vacation, but mostly I’ve kept to myself. Visitors are exhausting for me, not just because making conversation can take all I’ve got, but because I don’t know if I’ll see that person again, ever.

Something that may be hard for you not-dying people to understand is that I am constantly thinking about whether this is the last time I will see you. Imagine the emotions this raises in me, and maybe in you too. I’ve had plenty of tearful hugs following visits, and those hugs have not been easy.

And so sometimes I’ll say no to a visit, not because I don’t love you or care about you, but because I’m not up to the emotional turmoil a visit will raise. I’m not up to my own emotional reaction, let alone yours. Will I have to support you emotionally through the visit or will you know how to manage those emotions without my help? I don’t know, but I do know I’m not up to being anyone’s support right now.

I know that I can barely keep my head above water emotionally right now, and I’m not up to being anyone’s lifesaver. It sounds selfish, I know, and it is. I don’t know that I’ve ever been so selfish in my life than I have these past months. But I’ve spent many years supporting other people, in- and outside my office, and those days are done. I wish I could still offer compassion but I’m admittedly self-focussed.

I lack emotional energy for anyone but myself. I trust you’ll understand, but if you don’t, I’m afraid you’ll have to catch the next bus. This one has run out of gas,

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.

 

Should I stay or should I go?

traffic sign with stay pointing one way, go pointing the other

Good news! I’ve learned how to use voice-activated dictation.

I’ve been struggling with my fine motor skills, including my typing. This has made it difficult for me to communicate with you, my dear readers. Were my hands steadier, I would have posted to my blog sooner. I feel like my thoughts are trapped in my head and I am unable to share them with you. Being unable to text on my cell phone, something I didn’t think twice about doing previously, is tough too. Just yesterday I learned how to use voice activated dictation. I am clumsy but I will get it.

Because we have been questioning whether I need to be in the hospice–I am less sick than I was when I was admitted there–I am still alive, although it has been a difficult week. I am less steady on my feet and do a lot of sitting around. And sleeping, often through the mornings. My poor balance frustrates me. Judy needs support me as I walk. I am often more alert in the afternoons but my days are shrinking.

The hospice has granted me day passes so I can spend time at home, where I am more comfortable. Also, I have a pass for this long weekend. With this pass, J. and I will be able to determine whether I need to be at hospice or whether, with her support, I might be able to function at home. It would certainly be less exhausting travelling between hospice and home every day.

Here’s my bigger dilemma: do I stay at the hospice, where the resources are immediately available if am in medical distress, or do I take the risk of moving back home, knowing I may not be able to access those supports when I need them? Also do I stay at a place where I am comfortable knowing I am waiting to die, when I would rather be at home with my family?

By the end of this long weekend, we will make this decision. I am not in denial about my impending death and neither is Judy. I arrived at the hospice sicker than I am today. So I have the weekend to decide where I need to be, and am lucky that the hospice will hold my bed. If I need to return to the hospice, even over the weekend, that’s what I’ll do.

If we decide we don’t need hospice yet, I will reengage with the palliative home-care team and they will support me in the home as needed. Maybe that will mean home viisits or telephone calls with the palliative home-care nurse. Either way I will have supports available to me.

It is strange to check into a facility assuming I would never check out, except perhaps by checking out. But we may decide my dying at home is a better option. So I’ll have the weekend to decide where it would be best for me to die (assuming I don’t die over the weekend). Some time will help us to sort this out.

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.

How many mitzvot does it take to change a life?

All it takes is one good deed--doves flying around world with banner

It has come to my attention that I need to clarify last Friday’s post. Do you really think I’d hallucinate a perfectly braided six-strand challah? Or a hockey pool trophy? A prize-worthy freshly baked pie? Is my hockey pool win that unfathomable?

But do you really think I’d go so far as to fake a morphine hallucination? Would I stoop that low? No, kids, I was not hallucinating. I’m sorry if my tongue was not implanted firmly enough in my cheek. Despite my persistent proclamations otherwise, I am sad to report that I would lie to you after all. In the coming weeks, perhaps we can work on rebuilding trust.

The last week has been a whirlwind. Out-of-town visitors, two units of red blood cells, a baking extravaganza, and not just one but two blood donor clinics held in my honour last Saturday. After weeks of preparation, Supercousin in Toronto and Superfriend in Calgary pulled off the impossible: they gathered donors near and far to give the Gift of Life in my honour.

Those who could not give blood contributed in other selfless ways–they provided home-baked goods, singing, and moral support–while those who could donate made time, some overcoming paralyzing needle phobias, in support of an important cause.

Those donors who were not available at either site that day made appointments to donate on other days. There were many first-time donors who breezed right through, realizing that the process is easy peasy and wondering why they’d never donated previously. I wouldn’t be surprised if they found themselves donating again in the future.

The generous donors, young and old, first timers and repeat attenders, who participated on Saturday, know that I am dying. They want to feel they can contribute to prolonging my life in whatever way they can. Our dear Calgary friends who happened to be in Toronto this past weekend dropped in on the Toronto clinic so they could participate, roping their relatives into donating on their behalf. Many of the mensches I had not even met before.

So how many mitzvot does it take to change a life? One would have been enough, but there were so many freely given on Saturday, I lost count. All of these mensches taking an hour or two or three out of their day to give that most precious gift, not just of life but of hope and support. Were our roles reversed, I’d only hope I would do the same for you.

This week, when I may well need a red-blood-cell top up yet again, I will be thinking of all of you, whether you donated or not, knowing that you did whatever you could for me.

For the months leading up to Super Saturday, I felt loved and nurtured. People understood the urgent need for blood, not just for me but for others in my predicament. I’m not the only one benefitting from mensches like you.

So thanks. A lot. I wouldn’t be alive without you.

I’ve decided it takes only one mitzvah to change a life. Everything else is icing on the lemon-poppy seed cake. And I’d hope, were our roles reversed, I’d give as freely to you as you have given to me.

And then the hallucinations started….

Annie hiding behind hockey trophyAfter that long day receiving red blood cells at the cancer centre, I was pooped. I had been forewarned that my wonder drug, morphine, might cause hallucinations. I have slowly been increasing my dose, and had recently taken a booster dose upon experiencing breakthrough pain. That’s when strange things started occurring. 

First, my non-Jewish friend with Jewish baking prowess unexpectedly showed up at our door with a six-strand challah. Yes, you read that right, six strands of gorgeous challah braided to perfection. I have never seen such a gorgeous loaf, even at a Jewish celebration. This is the same friend who outdid all of us, Jewish or not, at the recent Jewish baking class, assembling those bacon-filled knishes adeptly as she did. She’d also dropped off a chocolate babka she’d made one day long ago, as if she whips together Jewish gourmet offerings all the time. I knew her history and her skills and YouTube cheater videos, yet I was sure I was hallucinating the challah.

The friend brought the challah in, removed her shoes, and settled in. I figured it was all a dream. Then, as the morphine took hold, I tried to keep myself from nodding off altogether, while another friend appeared unexpectedly with a trophy-like object in one hand, and a gorgeous rhubarb-apple pie in the other. How odd. I couldn’t recall winning the Spelling or Grammar Bee (I would have been a shoo-in had I entered) or tried out for Name that Classical Tune. I was becoming very confused.

I took a closer look at the trophy and realized that the figure was holding a stick of some kind. Was it lacrosse or hockey? All I knew was that this friend too seemed to be expected, and he too assumed a place on the couch. Then his wife, Ms. Challah Bun in the Oven, arrived to join the festivities. Everyone else seemed to know why we were gathered, except for spacey old me.

If you thought you could easily pull off a surprise on me before, imagine how oblivious I am now. With morphine, I am off to La La Land, and I won’t be back for some time. A nap would have helped, but that seemed rude in present company, if indeed present company was not a mirage.

At some point, I was informed that we were celebrating my hockey pool win, that unfathomable victory I’d secured the week prior. Judy had chosen me such an excellent roster this year that I’d left even her own team choices in the dust. I’d have jumped for joy at the victory–surprise, surprise, this Jewish lass had never received a sports trophy in her life–but injury would have ensued. I can’t even walk in a straight line right now; do you think I can lift both feet off the ground simultaneously without risking serious injury?

This morphine is a potent drug. In no time, I’ve had my greatest dreams fulfilled. There I sat Tuesday afternoon, celebrating my first ever major sports victory, as I lay dying hallucinating. No, I will not share my morphine with you. Dying people are selfish.

 

P.S. I’m so excited about tomorrow’s Blood Donor Clinics in Toronto and Calgary. Your support has been tremendous.

Pain, pain go away. Don’t come back another day.

One hand reaching up through a variety of pills on flat surface

I thought I could stop boring you with all this drivel about pain management, but I was wrong. Prepare to be bored. My pain is escalating again. Despite my slowly raising my morphine dose, what the professionals call “breakthrough pain” is becoming a problem. The pain has started interfering with my sleep. When I awoke in pain yesterday and my early-morning morphine dose did not kick in for one hour, I was mad.

Off we were headed to the cancer centre. Before I was strapped to a bed for 5 hours receiving two lovely units of red blood cells, I discussed my situation with Dr. Blood Lite. His suggestion, as I anticipated, was to bring in the big guns. He said that beyond prescribing the short-acting version of the drug, his capacity to help me with a long-term pain-management plan was limited.

Who, would you imagine, are the big guns in pain management? The palliative team, of course. Remember they call themselves the Pain and Symptom Management Team for those dying people who fear the “palliative” word. I am only making fun of those avoidant people because I am clearly one of them.

It’s one thing to know the Dying Team is assigned to my care, but another altogether to actively involve the Dying Team. I had delayed engaging the team for as long as I could. Judie, the Dying Team’s nurse assigned to care for me, is a lovely woman but her job is to deal with dying people. And thus far I’ve managed to avoid addressing my impending death.

But call Judie I did, after I arrived home with fresh red blood cells coursing through my veins. I almost asked J. to do it–she’s better equipped to get through the tough calls without crying than me–but I rediscovered my inner grown up and called Judie myself. I was the one with the problem, I can best describe my pain, so why dump the call on J.?

After all that fretting, Judie was not in yesterday. Upon hearing the word “pain”, her receptionist encouraged me to speak to the nurse covering for my nurse. “No, no, no,” I said, “I will survive another day.” I will continue to pop short-acting pills until Judie can help me with a long-term plan. I need help, Dying Team receptionist, but not urgently. Leaving her a voicemail would be fine.

Early this morning, Judie called me back. She wanted to visit today–all Dying Team members are clearly in the no-suffering camp–but J. and I had other ideas. We had planned a nice drive to the mountains, followed by dinner with friends. Judie will come by tomorrow, assess me, and we’ll go from there. In the meantime, I will start track my morphine dosing for her information.

I’ll admit I’m bummed. I’m sick of pain, and I question whether it will be under control before I die. I don’t want to spend my remaining time fiddling with my optimal dose, the one that will allow me to function without sedating me excessively. No point eliminating all my pain if all I want to do is sleep. Judie agrees. She may be on the Dying Team, but so am I, it turns out. And she’s the one best equipped to help.

There’s a reason we call them magic mushrooms

Picture of three bright red mushrooms with white spots on them

Last week, I replaced codeine with morphine in my pain-vanquishing arsenal. Dr. Blood Lite prescribed me a low dose that I could take up to four times daily. He then sent me away for a week to give it a try.

The first day, I took the drug at the prescribed dose. I can’t tell you if I had any pain because I was busy sleeping. I had 4 deep couldn’t-keep-my-eyes-open naps during the day. I couldn’t even make it through a half-hour Food Network show. My eyes kept closing, and one hour later I dragged myself back to life, until the next wave of exhaustion took over. At bedtime, I was sure I would not be able to sleep since one of those naps was in the early evening, but as soon as my head hit the pillow, I was out cold.

I realized that I would have to manage my morphine dosing so I could stay awake during the day. There’s no point eliminating my pain if I’m too busy sleeping to notice. So I tried to split my hard little pills. This was not easy. I made a mess. The little line on the back was deceptive; I ended up with chunks rather than halves, and considerable white powder was left behind on my cutting board.

So what did I do? I took one of the small halves I had created, and then, like any true addict, I refused to let the remaining pill residue go to waste. I was not going to lose one microgram of my dose. At this point, I could have retrieved a mirror and a straw, like I see addicts do on television. You may find this surprising, but my life experience does not include snorting high-potency drugs.

Instead of inhaling the drug (and I’m not suggesting I took a more civilized approach), I licked my finger, dragged it through that residue, and stuck it in my mouth. Really, I was trying to ensure the next time we cut vegetables, we didn’t get high from dinner, although I realize that washing the cutting board might have been just as or more effective to this end.

Then I told J. how much trouble I was having splitting my pills. She responded with, “You didn’t…” Yes, I did. She started laughing as she envisioned me sucking drug residue off my finger.

Need I remind you that most people do not become addicted to pain medication used to target pain? Sure, those more prone to addiction may develop an drug dependency over time, but I am addiction phobic.

I decided it would be best for all if I took the pills to the pharmacist and told her I did not want to waste my remaining days mangling my pills. The pharmacist agreed with me and assumed the task willingly.

I’m still working toward 100% pain elimination but I’m close. Turns out, some days the pain is worse than others, and I have to adjust my dosing on those days. I am so much better that I can assure you I will no longer start crying if you ask me how I am. Also, if you come for dinner, I can assure you our mushroom lasagne will not result in hallucinations.

 

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.