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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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….

Neglecting my practice of gratitude

Scrabble letters randomly thrown saying

While I’ve been whining and snivelling, I’ve been forgetting to share all that I’m grateful for, because there is so much. Gratitude is the best distraction.

First, there’s Marie, the vein magician. The nurses have been struggling to insert my IVs of late, but not Marie. She always finds a vein on the first try, after everyone else has failed. I don’t know how she does it. One attempt means fewer pokes and fewer bruises. I don’t know what I’d do without her.

I’d be a mess without Canadian Blood Services and the generous donors that give the gift of life. I’ve had four platelet transfusions and three units of red blood cells in recent weeks and, without them, I’d be sunk. The difference between anemia and a unit of red blood cells is profound. I’m veritably perky, for a few days at least.

Then there’s Dr. Blood Lite, and Stephanie, my nurse practitioner, who have both supported me tremendously through this downslide. First, recall the compassion with which Dr. B.L. told me I was dying. He and Stephanie both have been by my side in the following weeks. When my body was misbehaving last week, Stephanie called me daily. Then Dr. B.L. and I crossed paths unexpectedly in the hospital corridor. He asked me how I was, and took the time for a quick consultation, calling the next day to follow up. I have been a high-needs patient over the past while, and my team has provided incredible support.

Our dear friends have been keeping in close touch, offering to help whenever we need them, and sharing their love and support and concern. They have not shied away from us despite my doom and gloom. The dog recently had a last-minute sleepover when we left town for the funeral. We were gifted with a delicious homemade lasagna, and. with it, the relief of two meals we didn’t have to cook ourselves. I’ve had friends hang out with me during my transfusions, some even bearing edible gifts. We could not ask for better day-to-day support.

Finally, now that the people close to us know about my prognosis, I’ve had to start telling those people who are a part of my life but more on the periphery. My acquaintances, for lack of a better descriptor. People whose paths I cross on a regular basis, but who are not as close. Some didn’t even know I was sick. Because I’d been so stable for so long, I’d stopped telling the world.

The warmth and caring and concern I’ve received from these people I’m less close to has been unbelievable, and largely no different than our friends. “What exactly can I do to help you?” they’ve said over and over again. I’ve even had very specific offers from people to make my life easier. I am in awe of the kindness of these people, who have blurred the line between friends and acquaintances.

Dying is not the path I’d have chosen, but I’m so grateful for all the generous support I, and we, have received since my health has turned. I don’t know what we’d do without it.

Now we head off on the first leg of my Farewell Tour. I hope you’ve bought tickets. It should be a blast.

Who let the dog out? Me! Me! Me!

I am still recovering from Wednesday’s fiasco. Hours spent waiting in hospital only to be sent home with nothing to show for it. I learned that repeated transfusions make the crossmatching process (finding donor blood the patient won’t react to) take longer and longer.

This complex crossmatching caused the delay, so that by the time they’d identified a match for me, it was too late to start the transfusion. That’s why I was sent home until the next day.

Finding a place to transfuse me the next day was an issue. Space is so limited at the cancer centre that the best they could do was schedule me at two different hospital locations, one for each of my transfusions. First, though, I’d have to go to yet another location for my IV iron infusion. It was going to be a long, complicated day.

I arrived early for the iron, but the nurses had trouble locating a vein for the IV. Three nurses, three pokes, and 40 minutes later, I was panicking about making it to my second location on time. That is, until the Wonder Women got involved. Two of my very competent nurses simultaneously realized that my running all over the hospital would add to my stress. I was blinded by the lightbulb that went off simultaneously in their sharp noggins. They said, “Why don’t we arrange for all three procedures here? Wouldn’t that be easier for you? We’ve got the space today.”

As soon as they raised this idea, I felt so relieved that I immediately welled up with tears of gratitude. For the next half hour, the whole unit was abuzz with the prospect of making my day so much easier.

The phone calls started. The O+ blood I would be receiving–Ms. B+ thanks you, Universal Blood Donor–was redirected to this unit, and as soon as my iron was infused, the blood transfusion was started. Without my having to move an inch, a whack of red blood cells began coursing through my veins. This is what we call patient-centred care: putting the patient’s needs first. My wonder women had a busier day because they assumed my care, but they told me how happy it made them to help make my life easier.

This small gesture probably shaved a full hour or more off my time at the hospital. As it is, I was attached to an IV for almost 7 hours, arriving home in time for dinner. I was utterly exhausted after two long days at the hospital. I sent Jeeves (J.) to get the car, she took me home, we enjoyed a lovely vegetarian lasagna prepared by a caring friend, and after a few immobile hours on the couch, I went to bed. And I slept like the baby I am.

The beauty of blood transfusions is that they take effect immediately. Today I feel like a new person. This morning, when Jelly woke me from my sleep with a mushy kiss, I got up and I let the dog out. For the first time in two months. All those other days, I’ve rolled over and gone back to sleep, leaving J. to drag herself out of bed.

Amazing what a few red blood cells can do, isn’t it?

Basset hound sitting on grass

How Canadian Blood Services saved my life

Woman's hand spraying and wiping a table clean, bucket in backgroundThis afternoon. I will be volunteering for the last time at Canadian Blood Services. I am hoping for a busy shift, so I can serve a lot of soup and dole out a lot of cookies. Time passes quickly when all those donor chairs are filled.

I owe a great deal to CBS. We are blessed with easy access to blood products when we need them in Canada. In the past, I have needed them. Whenever I did, the gift of life was there, thanks to the generosity of donors. When I was bleeding internally several years back and doctors couldn’t easily identify the source, a series of transfusions kept me alive.

I seem to be entering a phase of my illness where I may again need frequent topping up. Last week I was infused with mega doses of platelets. On Friday, I was due to receive two units of whole blood but the transfusion was cancelled last minute when my body decided to ramp up its own blood-cell production. I am leaving CBS as my need for its products is rising.

Sometimes I worry about how the clinic will run without me, which is ridiculous because it was running well without me before I got there and will thrive with the fresh blood of new volunteers. I’m not irreplaceable. But who can better thank the donors for coming? Who will be able to stress how important their donations are from personal experience? And who will wipe the tables after the donors leave? There’s a stray cookie crumb hiding on every table.

I have worked with many wonderful volunteers over the past year and a half at CBS. Many are students seeking entry to science programs or medicine. Others are grown adults like me who have some connection to blood donation through their own or others’ need. Some have set ways of doing things, while others go with the flow.

Some volunteers provide soup with one package of salty crackers while others give two packs; some push the cookies while others encourage fluids, offering juice or pop; some stock the shelves while others schmooze with donors. There have been long discussions over whether to place the spoons facing up or down in the dishwasher. This I do not feel strongly about, although I’ve learned that others do.

Somehow I have become obsessed with wiping the tables. Whichever shift I’m on, I assume the task of cleaning up after donors leave. Call me the table-wiping overfunctioner. Knowing I am quick to eradicate table messes, my fellow volunteers have learned to underfunction, i.e., to neglect that task altogether. Take note, all you overfunctioners out there: leave work for others to do; they will do it in their own time.

It’s a good thing I’m leaving, then, since cleaning tables is a good skill for all to acquire, especially the young ones who will soon move out of their parents’ homes. I’ll do one final swipe before I depart this afternoon. Then I’ll say good bye, knowing someone will pick up the cloth within minutes of my leaving. Maybe the new table wiper will do a better job than me. Maybe I’ll surprise J. and start wiping counters at home. Stranger things have happened.

The challenges of ladling hot soup

Soup in bowl with crackers on side

Do you folks recall when I started volunteering? In the summer of 2016 I started applying for positions, unsure whether I’d be accepted for work because of my leukemia. Neither agency I approached seemed to exclude me on the basis of my illness, so unexpectedly I ended up with two volunteer gigs rather than one. I started at Canadian Blood Services in September 2016 and at PALS with Jelly a few months later.

I never thought I could sustain two weekly commitments for long, as much as I enjoyed both. I figured keeping up that pace would draw on too much of my precious energy. Some weeks were tough but I managed to attend the vast majority of my scheduled shifts. My health has been so remarkably stable over this time that there’s been no need to bail.

But, as you well know, loyal readers, my health is changing in ways I don’t yet understand. And these changes have necessitated an increasing number of doctors appointments. Jelly and I had to bail on our scheduled PALS visit last week because of my corkscrew procedure, for example.

Over the next while, I anticipate ramping up my time at the cancer centre, whether for appointments with Dr. Blood Lite, blood transfusions (thank you dear donors), or other procedures. Sometimes I’ll have sufficient notice to work around my volunteer schedule but at other times, like last week’s biopsy which I was informed of the day prior, I will not.

After considerable deliberation during one of my sleepless nights–I’m trying to make my middle-of-the-night awakenings productive–I gave notice at Canadian Blood Services a few days ago. I will have one final shift next week and then I will no longer be spending my Monday afternoons feeding people soup, juice, and cookies. I can no longer manage the two hours of heavy lifting–those soup cans weigh a ton–and dishwashing and table wiping and encouraging the donors to come back again soon. I am so wiped by the end of my shifts that even the drive home through rush hour traffic is becoming a challenge.

I could have left PALS instead, but our visits are shorter and less physically demanding. I transport Jelly to the visit site, sit on a chair while Jelly lays on the floor, and don’t move much until the visit is over. Also, Jelly has told me she’d like to keep PALSing, especially since some days her ageing body is not up to a walk. These visits get both of us out of the house with minimal effort.

Still, CBS had its own rewards. I was thrilled by the sight of a busy clinic, or of regular donors reaching milestone donations. I loved meeting first-time donors who realized the process was a breeze and planned to return. And I took great pride in eventually mastering soup ladling without major spillage or skin burnage. Not everyone belongs in food services.

I was an abject failure at one responsibility, however: I panicked on the rare occasion when someone fainted after donating. My ability to manage such crises did not improve over time. Thank goodness others could step in when I froze. We all have our shortcomings.

The Syrians are coming! The Syrians are coming!

Over the holidays, I was seated beside a lovely fellow at a get together. Out of nowhere, he said he didn’t understand why Muslim women had to wear head coverings now that they were living in Canada. “They should dress more like us,” he said. Then, to my alarm, he added, “We won’t be able to tell if they are terrorists.” Whoa! I wasn’t expecting that.

I challenged him politely, suggesting I thought everybody should be able to choose the way they dressed. Maybe I was too polite, though, because he then asked me if I agreed with him. I fumbled. I didn’t want to offend someone I’d known for a long time and would likely see again, but I strongly disagreed, and told him so. The conversation was unsettling.

I frequently interact with Muslim women wearing traditional garb in my day-to-day life. They may be students at the university who pet Jelly during her visits, or professional women, or moms shopping with their children at the grocery store. I’ve never worried that they were terrorists because of the way they were dressed. Why would I? We’re all more similar than different.

Thank goodness my unsettling experience was followed by a quick counterexample when I volunteered at Canadian Blood Services on New Year’s Day. For weeks now, the volunteers had been reminded that a large group of recent Syrian immigrants would be donating blood that day for the first time in Canada.

When I arrived, the clinic was hopping. I’ve never seen it so busy. Syrians filled every donor bed. Giving blood is ingrained in the Syrian culture because of all the political unrest: when they were back home, they never knew when a sister or child or friend might need blood, so they gave just in case. They may have donated blood regularly in Syria, but they were out of practice since their arrival here.

The Syrian group was accompanied by a bevy of interpreters to ensure they understood the process. There was genuine camaraderie amongst the (mostly) men. It was a social outing for them, a time to hang out with friends. I couldn’t understand their language, but it looked like some donors were being chided by the others for being nervous. Each donor had the company of a friend or two to chat with while he gave. We volunteers were to provide refreshments to these donors after they’d finished donating.

I am pleased to report I didn’t spot one terrorist among the group. These were warm, friendly fellows who seemed happy to be there that day and grateful for the chance to socialize with fellow Syrians. Whatever stresses they’d surely endured since arriving in Canada seemed irrelevant for that short time. They were simply enjoying the company of compatriots.

I wasn’t the greatest volunteer that day. I was too busy tearing up, astounded as I was by the generosity of this group of newcomers. It was quite a sight to see such a crowd making an effort to give back to the country that had welcomed them. Know that I’ll gladly take your blood if I need it, Syrians. I, for one, thank you for donating.

Nurse with Syrian blood donor making peace sign as he donates

Celebrate your milestones, whatever they are

3 Light the Night walkers with their Survivor t-shirts

We leave on our big vacation in 12 sleeps. When we were first planning this vacation, J. told me her rush of fall weddings would end immediately following Thanksgiving. We could be on the plane already, except I didn’t want to miss the annual leukemia walk. Which would you choose, a trip to Israel or a leukemia walk? Don’t answer that.

This decision to delay the vacation may not make sense to you; I’m a little bewildered by it myself. Going on this annual walk, hanging out with my fellow leukemics, wearing my guest-of-honour SURVIVOR t-shirt, has become a significant event in my year. I’ll try to explain.

My definition of a milestone has changed over my five years with leukemia. After I became so sick, I was proud of being able to walk unassisted and to tie my shoes without falling over. I vividly recall my first post-diagnosis yoga class, which I survived despite falling over a few times. I remember cooking my first real dinner post diagnosis, and seeing my first client. Being alert enough to drive again was another milestone.

As time passes, the goals have shifted. There’s the annual Cancer Centre’s Christmas gift-basket draw, which means I’m alive to lose my money again for a good cause. I don’t hate my birthday anymore, and the importance of cancerversaries is self-explanatory. For whatever reason, this leukemia walk has taken on an odd significance in my annual calendar. It’s my prize for getting leukemia and not dying from it.

This year’s will be all the more special because I will finally receive my 5-year pin. Now you know the real reason I delayed my vacation: I wanted a silly little commemorative pin. Frankly, I could have lied about how many years I’d had the illness and received this pin anytime–no one asks for a doctor’s letter–but I’m too honest for such deception.

This coveted pin is nothing to speak of. It’s the shape and colour of a drop of blood with a 5 on it. The blood-drop symbol is almost identical to that used by Canadian Blood Services. When I wear my pin proudly, people may well assume I am a blood donor (I selfishly only take blood), and not a leukemia survivor.

Does it matter that the pin will have meaning only to me? Of course not. If anyone asks, I can always set them straight. (Ha ha. “Gay person sets unknowing one straight.” And they say we’re out [no pun intended, truly] to convert people!)

When I was first diagnosed with cancer, I never envisioned reaching goals like these. Now, planning for my next milestone keeps me hopeful that leukemia is not going to take my life. No wonder cancer-related goals, however insignificant, have become so important to me.

Then, two days later, J. and I will leave for Israel. Who ever thought I’d get any doctor’s blessing to travel so far? Yet another cause for celebration. That and anticipation of the best hummus and falafel anywhere. I can almost taste it….

A plate of hummus with falafel balls in the middle