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.

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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….

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

Picture of new Calgary Central Library

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

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

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

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

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

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

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

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

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

 

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.

Returning to the shock stage, whether I want to or not

Signpost showing 5 stages of grief: denial anger bargaining depression acceptance

Last week, I failed to skip grief’s anger stage. Today, to reinforce our moving between the stages of grief in a nonlinear fashion, I reintroduce shock. You might want to sit down. I am.

Do you remember a few months back when I told you I had a year or so to live? (How could you forget, since I’ve reminded you regularly in subsequent posts.) I genuinely thought this news was the hardest I would ever receive, but I was wrong.

First, I should confess that I have not been well of late. I’ve been exhausted and weak (the couch has been craving, but not getting, alone time), and my appetite has been low. I’ve also developed a chronic low-grade fever and night sweats. I knew something had shifted; I just didn’t know what.

During yesterday’s visit with Dr. Blood Lite, I learned that my illness is progressing at a much faster pace than he anticipated. Despite recent transfusions, my blood counts are on a downward spiral. My bone marrow has apparently reached the point where it is no longer producing blood cells.

The short-term solution to this problem is weekly transfusions. Over the next while, I will be spending one day per week at the cancer centre receiving other people’s blood. If you haven’t yet donated blood but are eligible to do so, I really need you now. If you can’t donate, bully a friend into it, would you? Transfusions are truly a matter of life and death for me.

But–and there is always a “but”–transfusions will only sustain me for so long. At some point, my blood counts will drop so low despite those transfusions that there will no point continuing them. Once they end, I will die. I don’t know how long that will take, but it will happen.

Because I am a seeker of the truth, I questioned the timeline I’d initially been given. Dr. B.L. concurred that it was unlikely I would survive the year, and suggested that perhaps I would live until the summer. That’s not very long.

When I thought I had a year, I could get my head around dying. I figured by the time the year (and I) ended, I’d be ready. I wasn’t expecting this curveball. I will admit I’m not coping as well with my shortened life span. I have less time to prepare myself, and I have so much left to do.

There are some difficult matters to be addressed, now sooner rather than later. J. and I are talking about where and how I want to die and then, even harder, how I want to be put to rest (even I appreciate the odd euphemism). I have placed my end-of-life wishes on file at the hospital, and set up a meeting with the home-care team that will assist my transition to a hospice if I choose that route. J. and I are also meeting with the kind local rabbi who, despite my not being a temple member, will conduct my funeral.

Shock isn’t a bad thing; it buffers the worst blows, except at 3 a.m., when it is MIA, leaving panic it its wake. Why isn’t panic one of the stages? Maybe grief staging is due for a revamp….

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.

Regrets, I’ve had but one.

Open mouth with dental mirror inserted

A long time ago, I wrote a post about living life without regrets. No regrets was someone else’s idea, of course–I would never consider absolving myself of all the messes I had made of my life. How would I occupy my mind if I didn’t stew about my mistakes? The notion of living without regrets is quite freeing, though, and I’ll admit, I’ve tried to uphold it.

I think of my 18+ years of illness and see how much I’ve kept living through that time, as best I could. I ran a somewhat successful business, I made enough money to live comfortably and still have some left over, I made good friends, I found J. and with her parented a series of wayward dogs, I even baked croissants and danishes not so long ago, and I travelled near and far. These are all wonderful things. Sure, there have been periods when my illness has constrained what I could do, but for the most part, I’ve lived my life.

Yesterday a friend whose husband is dealing with life-threatening medical issues told me, “Each day is a gift.” I hate to be Anti Annie, but I challenged her on this. At this point, each day is not a gift, or if it is, some days it’s a gift I want to return to sender. Lately, some days are spent in bed, others accomplishing much less than I’d planned, and yet others hanging out at the cancer centre, often for hours. Sure, everyone at the cancer centre is lovely, but why would I want to be passing my precious time there?

I recently realized that, while I was busy living in the moment, especially over this past year, I’d completely forgotten to go to the dentist. That’s one full year without a cavity check or cleaning, and you know how seriously I take my oral health. Sure, I may not brush after every meal, except if greens were consumed, but I still floss daily without fail. Flossing also happens to minimize the bleeding from my gums that is symptomatic of low platelets.

And so here we are, almost 18 months since I last graced my dentist’s chair, and my teeth are in desperate need of dental care. So I asked Dr. Blood Lite one day whether I could see the dentist.

Dr. Blood Lite is a very kind man, a gentle man, a supportive man, who does not like to refuse me anything. He diligently explained what a dental cleaning would require for someone in my condition. First I’d need a platelet top up, which likely would fail to raise me to the level necessary to inhibit bleeding. Then I’d need to rinse before and after the procedure with an expensive prescription clotting rinse. Oh, and the hygienist would need to use tools fit for a toddler, and not fear a blood bath. That would be a no, don’t you think?

Let my one regret be my going to the grave with decaying teeth. I’ll keep up my diligent brushing and flossing for the duration because that’s all I can do. Will they let me through the pearly gates without pearly whites? At this point, I can only hope.

 

Restaurant review: The Golden Arches

Big mac laying on french fries

Last Tuesday, J. and I spent a long morning at the cancer centre. I’d received not-as-bad-as-it-could-have-been news from the doctor. My body is stabilizing somewhat, and my brick is less thick. After a quick infusion of platelets, I was sent off for two weeks. Since a celebration was in order, and we were both peckish, J. suggested the Golden Arches on the way home from the hospital. Off we went.

There is ample free parking outside the restaurant. If you are lazy enough to want your fast food without even leaving your car, there is also a drive-through window. Such conveniences for the lazy cannot be overstated.

It’s been 25 years or more since I’ve entered a Golden Arches. The decor was updated minimally from what I recall, and there was ample seating. Unfortunately, moulded plastic is not an especially comfortable seating choice, perhaps used to discourage patrons from lingering. We found ourselves a table for two. Surroundings were spic and span, especially considering the heavy traffic through the restaurant.

Unfortunately, we arrived 15 minutes before the grill was open for lunch. Although the Golden Arches now offers all-day breakfast, burgers are not available until 11 a.m. We returned to our uncomfortable seats to wait.

The menu has expanded considerably since I was last there, but I only had eyes for the Big Mac I have been coveting for months now. Also, I was worried that were I to sample an absurd variety of items, like a real restaurant reviewer, I might hasten my own death. Thus, J. and I agreed on splitting one Big Mac (my choice) and a large fries (her choice).

At the top of the hour, J. placed our order. Prices have certainly gone up since I was last here. Can you imagine nearly $10 for these two measly items? Our food was ready within minutes and J. brought our tray to our table. With it came considerable packaging waste, and the restaurant does not provide composting bins. Shame on you, Golden Arches!

I must note that portion sizes have decreased since I last visited. That Big Mac was anything but big. The basic recipe was unchanged, however: there were indeed two all-beef patties, special sauce, lettuce, cheese, pickles, and onions on a sesame bun. J. and I agreed that the chef had been overly generous with the special sauce, drowning out all the other elements. Overall, the burger was meh. The shoestring fries arrived steaming hot, and there were more than enough for two to share. We managed to scarf every single one down easily.

Overall, this experience was a huge disappointment. Although I had consumed a larger lunch than I normally would, and an excess of sodium and fat, I was hungry within an hour of eating. Perhaps I should have also ordered the chocolate shake I used to buy when I was younger and had a faster metabolism. Does this omission warrant another visit? Likely not. Once in 25 years is more than enough for me.

Reservations: Not required
Alcohol: Not licensed
Free Wi-Fi: Yes
Open: 24 hours daily
Ambience: A little too bright and cheery for me
Locations: On every major street corner
Good for: Rich people, including those with small children
Overall Rating: 2/5 stars

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.