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.



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.

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.

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.

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….

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….


I’ve always worked better with deadlines

Picture of gate into Jewish cemetery

Deadline is a funny word, isn’t it?

All I need is a deadline looming to spur me into action. I have one now, a final one, with no extensions, and lots left to do before it arrives. Boy have I been busy this week! It’s a good thing I got those two pints of red blood cells earlier this week.

Yesterday we met with the Reform rabbi whom I’m hoping will conduct my funeral even though I am not a member of his congregation. I’ve heard only good things about him from those who know him. He was as wonderful in person as he’d been described. I was surprised to learn that wanting to meet the person who will officiate one’s funeral is unusual. Wouldn’t you want to know the person who’d be sending you off? My goal was not to vet him but to know he’d be willing to take the job. He reassured me that he would.

I also wanted him to meet me. How many funerals have you been to where it was clear the officiant knew nothing about the person who’d died? I don’t want an impersonal ceremony. Sure, it was a hard meeting, and tears were shed, but moreso, J. and I were both deeply comforted.

Today we met with the lovely Jewish funeral director and visited the cemetery adjoining the funeral home, where I will ultimately be buried. I would like to choose my cemetery plot, although I’m hoping my spirit will reside elsewhere. Maybe you could all hold on to a bit of it after I’m gone? Just take the parts you like and leave the rest for the worms.

The director explained the process from death to burial, and made himself available for future questions. I was so relieved to hear about the openness of this organization to Jews at all levels observance. Like the rabbi, this fellow did not bat an eye at J.’s presence as my wife.

Finally, and less critically, I dropped by the optometrist’s office to return those contact lenses I’d recently purchased, figuring I likely wouldn’t need them. When I told the assistant I wanted a refund–I spared her an explanation of why–she seemed unusually miffed. She scurried into the back, returning a short time later with a colleague, who questioned my request. Why I was returning lenses that had worked so well for me for so long?

I was trying to spare the ladies my reality, but you know what happens when I’m pushed: I’m honest. So I told her, “I will not need them because I am dying. I won’t have sufficient time to use them.” She then cheerily refunded my money while her colleague looked on sheepishly. As I was leaving, Ms. Refunder said, “Hope to see you soon!” Did she mishear me? Her response was as insensitive as last week’s letter from the psychology college, I’d say.

Anger, anger, go away. You’re not helping matters. Better to focus on gratitude for these two lovely men who will guide us through this process of death and dying. Thanks to them, we both feel supported and comforted as we head into the final stretch. With so little control right now, we’re grateful to be able to make some, any decisions for ourselves.

All I wanted was a week off cancer :(

Basset hound outside on leash

After three consecutive Tuesdays spent hanging out at the cancer centre, I scored a reprieve this week. I was granted 5 whole weekdays to do with what I chose, except for Monday, when I’d take a jaunt to the lab for blood work. Otherwise, I had a brief respite to make plans, have a life, and forget I had terminal cancer. (A dying person never forgets.)

Then disaster struck. (I’m being a touch overdramatic here.) Early Tuesday morning, I got the dreaded call from the hematology clinic. The nurse’s opening question was, “Are you bleeding anywhere?” Sure, my gums were leaky despite my extra sensitive tooth brush–good decision not to see the dentist–and I’m covered head to toe in bruises. I know what this means, as should you, if you’ve been paying attention: my platelets are precariously low yet again.

I must admit I was surprised by this news. I had bet with J. that, if anything, only my hemoglobin had dropped. I’d been napping daily, and deeply, over the past week. I lost the bet. I’ve got the same number of red blood cells I had last week. I should be happy that my hemoglobin is holding steady, but I’d rather not hold steady where I’m at. Within this range, I feel anemic, but I’m not quite low enough to warrant a red-blood-cell transfusion. Consider me in hemoglobin purgatory.

The nurse suggested I come in immediately for a platelet transfusion. I boldly asked her if I’d die if it waited until the next day. You see, I’d had the gall to plan some activities–a dog walk, a Pilates class I love that conflicts with my cancer centre appointments, and coffee with a dear friend I’ve been missing. Sounds like a perfect day in the life of a dying person, doesn’t it?

After I hung up, I told J. I wanted one full week where I could pretend I didn’t have cancer. She doubts I’m going to have any more weeks like that, and she’s the optimist in our relationship! She’s probably right.

I fear my life may be all about cancer for the duration, with frequent visits to the cancer centre, last-minute transfusions, and other random medical interventions. I need to get my head around that, but I don’t really want to.

Still, I’m going to hold on to whatever normalcy I can despite the chaos of cancer. When I’m told to jump, rather than automatically asking, “How high?”, I may occasionally ask if there’s room for negotiation.

The nurse agreed to ask Dr. Blood Lite if I could safely delay my transfusion until the next day so I wouldn’t have to cancel my best laid plans. She actually sounded relieved that she’d have more time to organize my transfusion.

I had a lovely day yesterday, although I’m regretting the Pilates class. Attending a class like this is tough at the best of times, and this is not the best of times. Add on the dog walk, and the coffee and I wore myself out. Today I am recuperating from all that frivolity, and tomorrow I will receive platelets since there was no room today. I’ve even lived to tell the tale.

My drugs they are a changin’

Cartoon basset hound walking with frisbee in mouth

After my last post I was inundated with comforting comments, texts, and emails from far and wide. Have I mentioned how blessed I am to have such a warm community of support? I don’t know what I’d do without you guys. However hard it was to share my sadness, I don’t regret doing so.

I was a bit disappointed, though, that no one commented on my crying Saddy image. I was quite proud of my first GIPHY. It’s not too late to teach this old dog new tricks, so long as they’re easy ones.

Speaking of old, when I was out shopping today, the cashier spontaneously offered me a seniors’ discount. I wondered if I looked especially palliative to her. And I’d thought I was having a good day….

This brings us to yesterday’s appointment at the cancer centre, which was an improvement over the last few. I needn’t have fretted about what Dr. Blood Lite might find in this week’s blood work. There were even a few positives. My hemoglobin is holding steady, which I can tell–my energy has been much improved this past week–and my platelets are a smidgen higher than last tested. This means my brick-like spleen baby did not devour too many of my healthy blood cells this past week.

These findings warranted a number of medication changes. I am eliminating my steroids because they are not increasing my platelets as much as the doctor had hoped. This means that I can no longer blame my persistent crankiness on this medication. Time to start owning my irritability.

My performance-enhancing hormone, EPO, has been doing such a good job at eliminating my need for red-blood-cell transfusions that Dr. BL is trying to figure out whether I need it at all. He has suspended further injections for now. So much for a sustained increase in athletic stamina.

Dr. BL also suggested a vacation from my TKI, the targeted medication that destroys my CML cells. TKIs, like many chemotherapies, reduce all blood cell production, good cells and bad. When my platelets first started dropping a few months back, Dr. BL suggested a TKI break to see whether eliminating this drug might help increase my blood-cell counts.

The TKI has managed my CML effectively for so long that these mutant leukemia cells have been barely detectable in my blood for years now. Coming off the drug for a month or two is safe, from what I understand. Dr. BL reassured me that if my CML cell counts rise without the drug, I will get back on it and it will get back to work. Eliminating any potentially unnecessary medication is worth a try, especially if doing so will reduce my nosebleeds and bruising and the other annoyances of an inability to clot.

Next time you see me, you may be surprised to encounter an energetic, upbeat senior who, unfortunately, may not be able to keep pace with you on your next marathon. Still, feel free to hug me at the finish line, if I ever get there, taking care you don’t squeeze me too tight. Then we can go for coffee. But don’t even consider inviting me over to hang out on your white couch. Some days I’m still a bloody mess.