How many mitzvot does it take to change a life?

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.

Death by trifle

Thanks to all of you who have provided suggestions for my failed eulogy. You have all been much too kind. Perhaps someone would like to assume this task for me altogether? I am finding myself uncharacteristically paralyzed by my impending deadline.

Plus, I’ve been too busy with death preparations to eulogize. Last week, J. and I met with the palliative home care nurse, for one.  She arrived at our home just as a challah was coming out of the oven and, between her sighs over buttered bites of warm bread, we chatted about the heaviest of topics.

Nurse End-of-Life was lovely, personable, and straight forward. She provided a wealth of information about supports within the health care system for people just like me, and she answered many of the questions a dying person might have. We discussed how and where I might die, and how palliative care can help as I near death. I have always stressed that J. must not assume my nursing care once I am unable to care for myself.

There’s the question of dying at home vs. in a hospice. I don’t know where I’d like to be; I don’t think I’ll know until the end is nearer. I hope I will be well enough to make that decision with J. at that time.

Although we may visit hospices to get familiar with them, neither of us feel a need. Jelly and I had regular PALS visits at a hospice, which provided enough exposure for me. Through my volunteering, I had ample opportunity to witness the peaceful, warm environment for patients and families. Although this hospice is a lovely place with kind, attentive staff, I personally would not choose to die there because each Wednesday afternoon they hold a tea where they served trifle. I hate trifle. If a hospice is in my future, I’m hoping for one with tastier tea time offerings. Also, and perhaps more importantly, I would feel self-conscious dying in a place where residents and staff knew me previously as a volunteer.

We also discussed how people with hematological illnesses die. I’ve managed to avoid seeking this information, although deep down I know. According to Nurse End-of-Life, hematology patients don’t spend much time in palliative care because their deaths are often quick and unexpected.

J. and I had very different reactions to this meeting. J. was eager for the knowledge, and felt many of her questions were answered. I, on the other hand, was completely overwhelmed by the frankness of the discussion. Not surprisingly, my mood took a nosedive, and it hasn’t yet recovered.

Thus far, I’ve avoided asking the hardest of questions. I want to gather information as I need it, but not before. I’m torn between wanting to know the truth and wanting to avoid it for as long as I can. This meeting forced me to consider what might happen to me and my mind has had trouble thinking of anything but death since.

Time to research the teatime offerings at other hospices. That would help to distract me from my death, and I may be pleasantly surprised that not every hospice serves trifle. Thinking about better baked goods is bound to cheer me up. I’m sure of it.

Some assignments are hard to study for

This weekend, at one of my last PALS visits with Jelly–it is time for us to play bow out–a woman I’d visited previously asked if I was taking leave because I was pregnant. From the cradle straight to the grave. I didn’t have the heart to tell her that, in fact, she had mistaken my spleen for a fetus. Please folks, don’t assume you know what’s going on under that tight shirt. Save yourself the embarrassment of being wrong.

I’m telling you this story only to avoid discussing what’s really on my mind. I’ve recently been given the hardest homework assignment of my life death. I envision a big F on my horizon. I’m procrastinating despite my quickly approaching deadline (and I don’t mean “due date” here).

When J. and I met with the rabbi, he suggested I write my own eulogy. Very clever, I thought. This way, he could get to know me and to find out how I’d want him to characterize me. The task seemed so creative and insightful at the time. And I love to write; I was excited to try.

I’m not doing very well. I’ve drafted and redrafted my sendoff to no avail. What I’ve written so far would put you to sleep. What would I want to capture in my eulogy anyway? I could list accomplishments, few that they are, and bore you to tears. I don’t want to be remembered for what I’ve done in my life but for the kind of person I am (I was? But I’m not dead yet!).

If you asked me to write your eulogy, assuming we are close, I’d enjoy trying to capture you to share with others. But characterizing myself? That’s a lot harder.

You know I love to write. Writing my blog has never been a challenge. Absurd ideas come to me and within an hour or two, I’ve dumped them on you. Some posts are better than others because I can’t be at the top of my game every day. No one can. I do the best I can on that day, knowing that on another day, I might be able to do better (or I might do much worse).

But back to the eulogy, which I’ve been writing for 4 years already. I’ve titled it Muddling Through Leukemia, but I’d consider the blog my evolving perspective on life and death. If you want to know who I am, who I’ve aspired to be, and where I’ve failed–oh, how I love to emphasize my failures–read my blog.

I can’t ask the rabbi to read four years of posts to get a flavour of who I am, though; that would be unreasonable. So I will try to draft something for him, if I can find the emotional energy to do so in the midst of all I am dealing with at this time. And if I fail miserably, I trust the rabbi will be able to fill in the blanks. He strikes me as extremely capable, and I imagine he has more experience with eulogies than I do. And he is compassionate, so maybe he’ll cut me a little slack. If I’m lucky, I’ll end up with a D, since I don’t have time to repeat the course.

What happens when illness interferes with real life?

I’m bummed out. I admit it. I had a lovely day planned: tea with a friend I have not seen in ages followed by a PALS visit at the seniors’ residence. Jelly was especially pumped about the potential for couch time with the seniors.

Then I got a call from the lovely nurse practitioner at the cancer centre. I had had routine blood work done yesterday. Stephanie informed me I’d gone from kinda anemic to mucho anemic. I needed two units of blood pronto, i.e., the next day.

Looking back on the last few weeks, I am not surprised by this news. I’ve not been not functioning well, as I’m sure J. could confirm. I’ve had an increasing number of bad, i.e., utterly exhausted, days. On Monday, I was napping by 11 a.m.

I didn’t take well to illness interfering with my real life for the day. As the medical needs associated with my illness are escalating, I am more often cancelling my best laid plans with short notice.

With a chronic progressive illness, little parts of me are being chipped away over time. First there was my livelihood and the joy of helping others. Then all the evening social outings that fell well past my bedtime. Lately, even yoga is a stretch. (Ha ha.) And dog walks are fewer and farther between. Having the energy to cook or bake is often too much these days. Unfortunately, this list may only get longer in the coming months.

But some activities I will maintain if they kill me. Yesterday I contacted my PALS team lead and told her I would be bailing on our visit today. And then I wrote the lovely ladies at the PALS office, the ones who initially welcomed my volunteering despite my precarious medical status, informing them of my situation and asking if I could continue participating despite my unreliability of late.

I was overwhelmed by the responses I received. It may be heartwrenching to tell people that I’m dying, but it’s all the moreso to receive such warm and supportive responses. The sadness at the news, the compassion and caring and kindness in response, and the openness to my doing what I can with PALS until I cannot possibly participate any longer…I was deeply comforted by their words.

I will do what I can to maintain a life outside my illness, knowing that sometimes medical needs will have to take precedence. It won’t be easy, and I’ll resent days like today when my real life is interfered with, but I’ll deal with it. Not with grace, mind you. I did say I was bummed.

Ironically, after waiting 5 hours at the cancer centre today, I learned that, because of my complicated body, my transfusion would have to wait until tomorrow. Had I foreseen this turn of events, both Jelly and I could have had our planned visits. Jelly missed her couch time for nothing.

Tomorrow morning, after yoga, I will head to the hospital for a dose of IV iron followed by the two units of whole blood awaiting me. Hopefully, these interventions will help vanquish those 11 a.m. naps, at least for a little while. Jelly and I have a PALS visit this Sunday. Couches and cuddles await.

Living while I’m dying

That last post was not easy to write. I don’t like having bad news, nor sharing it. Who wants to read a story with such a sad ending? It turns out many people do. Thankfully, only a few of those people LIKED my post.

The reality of my health challenges has not yet hit. I may have suspected bad news was coming, yet that suspicion didn’t temper my surprise. Shock is a common response to learning of a terminal illness. Grief is funny that way. I’ve worried about dying for as long as I’ve been sick, but having to face my own demise head on? That’s another matter altogether.

Now that I have the results of my biopsy, I feel unexpected periods of calm, as if I’m walking around in a fog. Every so often my panic erupts, but I shove it away quickly. Thank goodness for my defences, which help me from falling to pieces at times like this.

I even feel some relief at the news, as weird as that sounds. I don’t want to die, of course, but the threat of death hanging over me for so many years has been wearying. I’ve spent 18 years containing my anxiety about a situation I have no control over. If only I could sustain this relief.

How can my emotions be so chaotic? I think it’s because my body doesn’t feel any different today than it felt yesterday. I know that my health is declining–my biopsy results confirmed that–but my body has not registered these changes. I’m not in hospital, and I’m still able to go about my day. How do I accept that my life may be ending when I don’t feel all that sick?

When I am faced with a crisis, I often get stuck. I can help other people manage their stresses–that’s what a psychologist does–because the solution is always easier to see from the outside. But I’m on the inside this time, and I can’t seem to find my way out. Not worrying about dying is far easier said than done.

I was telling a friend how distressed I’ve been, and she wisely reminded me that focussing on death while I’m still physically well is a waste of precious time. She suggested I might as well keep living for as long as I can. J. has been saying the same for years whenever my anxiety about my health has escalated. My life overfloweth with very wise people. I should listen to them more often.

This afternoon, I had the perfect opportunity to stop feeling sorry for myself while Jelly and I attended a PALS visit at the university. The stressed students needed comforting. Jelly’s howls echoed through the hallways as we approached the visiting room. Once we arrived, Jelly kissed and cuddled dog-loving students for 90 minutes, in between naps. For those 90 minutes, I put my worries aside and remembered that I’m not dead yet.

If you catch me moping over the next while, please tell me to snap out of it. Sometimes an outsider’s wise perspective is all I need.

How Canadian Blood Services saved my life

This 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

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.

A Hanukah Miracle

This time of year, everyone focuses on the Christmas miracle. So what if a baby was born of a virgin? There are many other miracles happening all around us. Take the miracle of Hanukah: the Maccabees lit the smidgen of oil found in the desecrated Temple and it lasted for 8 days! If that’s not a miracle, what is? Who’s the wondrous one who thought of making coins out of chocolate? Yet another Hanukah miracle.

Then there are the many local miracles that happen this time of year. Imagine being a visitor at our local children’s hospital this week, only to look out a window and spy four local real live reindeer walking by. Nifty.

J. has been a busy little elf this past while performing Christmas miracles in support of the children at the hospital. She helped Santa dole out gifts to the inpatients, and sold gifts at a gala in support of the hospital. If she asked you, after purchasing your $250 ticket to attend this gala, “Would you like to buy a $40 gift for a child who will be hospitalized over Christmas?” Only a scrooge would say no.

Last Sunday she co-opted our special friend to volunteer with her at the Teddy Bear Toss, an annual Calgary Hitmen hockey game. Each year, attendees throw teddy bears onto the ice following the first Calgary Hitmen goal. The bears (or other stuffies, including two dreidels that J. saw) then need to be sorted into bags to be distributed to the children at 60 recipient agencies, including the hospital.

Our special friend is always dressed to the nines whenever she goes out, so let’s call her Ms. Glam. After hours of sorting stuffies, Ms. Glam realized she had lost the precious watch she had worn to complement her outfit that day. The watch was a beloved Christmas gift from her adoring husband last year. By the time she realized her wrist was bare, the watch could have been anywhere, including the garbage or amongst the bags of 24,605 stuffies. She figured it was lost forever. She accepted that perhaps she hadn’t made the best choice of accessories that day. She was not happy.

J. emailed her volunteer coordinator, described the lost watch as best she could, and figured that would probably be the end of it. J. firmly believes that, however unlikely the outcome, she always has to ask. Had the watch been found and J. had not alerted her coordinator to the loss, how could it ever make its way back to Ms. Glam?

Miracle of miracles, J. received notice last night. “I think we’ve found the missing watch.” An employee at one of the stuffie-recipient agencies found the watch when she unpacked a bag, and let someone know who let someone know who…you know how this story ends.

Ms. Glam couldn’t believe her luck. She’d thought it so unlikely that the watch would be returned that she had already replaced it. This afternoon, Ms. Glam is returning her purchase since it turns out she doesn’t need a new watch after all.

So be sure to ask, even if the outcome is unlikely, and then don’t give up hope. And don’t forget that people are basically good at heart. You already knew that, but the occasional reminder won’t hurt. Oh, and leave your special watch at home if you’ll be sorting stuffies.

It takes an introvert to know an introvert, or does it?

During our PALS visits at the university last week, Jelly became quite tired early on, as she often does. Despite the chaos all around her–other dogs, exam-fearing students–she lay down and fell asleep. I apologized to the student petting her at the time, telling her that Jelly often finds the visits exhausting. The student responded, “Maybe she’s an introvert.” Kids these days. They’re so smart.

I’d never really thought of Jelly as an introvert before, which is odd because I am one myself. Introverts like their alone time. They may also enjoy being with others, but they can find social interaction draining. Extraverts, on the other hand, are energized by spending time with others. They leave the party wound up rather than needing a nap. Most of us are ambiverts, falling somewhere in the middle.

Sometimes I compare myself to my extraverted friend, Ms. Bubbly (it’s Dr. Bubbly to you, but Ms. has a nicer ring to it), who is at the other end of the spectrum from me. She’s constantly running from one social event to another. I don’t know how she does it.

Ms. B always invites me to the frequent large social gatherings she holds at her home. She understands when I politely decline each and every time. She knows I’ve always found such get togethers overwhelming.

Later this month, Ms. B will be hosting her annual Hanukah party, which I have already declined. I need to save my limited social energy for two engagements we’d previously scheduled for the nights following. This means I will not get to eat any of the 12 dozen latkes she has ordered for the occasion. (You read that right: 12 dozen. She has a lot of friends.) The authentic latkes alone spur my motivation to go, but my introversion still won out. That and the potential for bruising from having to battle the crowds to get to the latkes.

Ms. B and I often go for coffee after Sunday yoga, a sign that introverts do not avoid all social interaction. They may prefer more intimate gatherings, and they enjoy solo time to regroup occasionally. When we go out, Ms. B and I have lovely visits during which we catch up on each other’s lives. I relish this one-on-one time.

I can manage small groups, so long as I don’t overdo it. Two major social engagements last weekend necessitated a day on the couch. My introversion long predated my leukemia, so I can’t blame my health. If I hang out with you, whether alone or with others, and my eyes start glossing over after a time, please trust it’s not you, it’s me.

Now that I think about it, I realize that Jelly hasn’t fallen far from this introverted tree. She prefers small groups of dogs, cowering in the bushes when larger packs approach. She, like me, assesses any situation fully before jumping in with four paws. And just as I enjoy my alone time, she is fine to amble the off-leash park on her own, stopping to greet only the most fragrant of dogs. When she is overwhelmed by a group, she does exactly what I do: she avoids the situation altogether, or she lies down and takes a nap. Like mother, like daughter.