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.


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.

From this day forward, reader beware

Puppy dog outline in shading of rainbow

I realize that my last post was heavy and depressing. I am grateful to anyone who read it, and for the resulting outpouring of compassion and support. Even as I was writing you, I wondered whether it was fair to dump these tough challenges I’m facing on you. Who would want to know I’m suffering from escalating, excruciating pain? What a downer.

When I first started my blog, my health was precarious but my death was not imminent, so my writing reflected that dichotomy. There were lighter posts to balance the heavier ones, and I worked hard not to overwhelm you, my readers, with depressing topics day after day. But times have changed and I am staring death in the face. Is it fair to expose you to this nitty gritty, or should I keep all that to myself?

You know my answer: I wouldn’t lie to you. You’ve been with me for the long haul and I’m not going to sugar coat my day-to-day experience now that I’m declining. Consider me too honest. I am writing about the reality of death and dying, which rarely involves puppy dogs and rainbows, or rainbowed puppy dogs for that matter.

I can attest from personal experience that dying is not fun. It’s scary and overwhelming and, although there are ways to alleviate my progressively debilitating symptoms, those interventions won’t stop the course of my illness. They won’t change my end date. In the meantime, no more suffering for this gal.

When I was at the cancer centre yesterday for a red-blood-cell transfusion, Dr. Blood Lite dropped by to discuss my pain. He told me pain was unacceptable, and prescribed morphine, which he felt was a better option than codeine. The doctor knows best, so off to the pharmacy I traipsed with my triplicate prescription.

Morphine is used widely in the management of cancer-related pain. Today I picked up my prescription from the pharmacist–I made this lovely young woman cry when I told her I was palliative–and I will start taking this drug tonight because I need to. I am hoping to knock my pain out of the park.

The doctor said I will not notice much difference in my functioning on this dosage of morphine as compared with the amount of codeine I’ve been taking. No walking around like a zombie or drooling out of the side of my mouth at this dosage at least, although I may experience the odd hallucination. I’m okay with that if the drug can reduce my pain. This should allow me to get back to living my life from somewhere other than the couch. I have so many items left on my baking to-do list….

So kids, you have a choice to make. You can ditch me now, and I will fully understand. If you stick with me, consider yourself duly warned that what I write may not be easy to read. But it will be honest, and I’ve always felt that honesty is the best policy. I think you’re strong enough to handle it. If it’s any consolation, I’ll be muddling through it with you since I don’t have a choice.

Pain management for idiots like me

Person with pill in hand

True confession: last week was miserable, and it needn’t have been. Anyone who asked me how I was feeling instantly regretted it, since I responded by weeping. Sorry for that, dear friends; I wasn’t coping well.

I spent the week suffering through debilitating pain unnecessarily. I know better, and you should too. I failed to follow a critical principle of pain management: catch it early and obliterate it before it consumes you. I am passing this wisdom onto you so you don’t make the same mistake I did. Don’t suffer when there’s help available.

Over the past few weeks, I have developed escalating pain in my legs. I don’t know what’s causing the pain, and I’m not sure the cause matters. If it’s a sign that I’m dying, I frankly don’t want to know. Over time, walking and standing became excruciating, and it got to the point where I couldn’t sleep or eat.

Pain is not okay. I cannot imagine the life of a chronic pain sufferer. I was trapped at home, since elevating my legs was the only thing that eased the intensity. Going out doing the simplest of errands, or even being active at home, increased my pain. I couldn’t even bake, which for me is tragic.

I had been trying to manage this pain with over-the-counter drugs, which were helpful initially, but not for long. On Saturday, after a brief walk, I arrived home in such discomfort that I reached for the codeine. Remember how I’d recently given myself permission to take the drugs I needed to manage my symptoms? Why wasn’t I doing that? Because I was an idiot.

I’ve been taking a variety of pills for years, all prescribed by my team of physicians. My granny pill cases are full to overflowing. I take what a doctor prescribes, but I’ve always been resistant to adding to that long list with over-the-counter pharmaceuticals. I had enough toxins flowing through my body on a daily basis; why would I want to add to that mess?

But pills can help. Within half an hour of taking that one dose of codeine, my pain started easing. It didn’t vanish, but it was muted significantly. Why had I waited so long for relief? What was I thinking??!!

My medical team has stressed that I need not experience pain while I am dying. I’ve been offered codeine and even morphine, yet I refused it all since any pain I had at that time was minimal and manageable. Why would I need opioids to manage pain I didn’t have? But I had a prescription for codeine just in case I changed my mind, and it’s a good thing I did. One little pill broke the cycle, and three little pills now gets me through the day.

If you see me walking down the street, I may look a little drunk. I’m wobbly and a little dopey at times. That’s codeine for you. Oh yes, and I’ve relinquished my car keys to J. Reluctantly. Before she had to wrest them out of my hands. Safety first, kids, safety first.