Dying person attends a funeral

Did I happen to mention that J.’s dad died? Probably not. The past three months have been so completely about me that, when she hasn’t been taking care of me,  J. has been dealing with a lot on her own.

Her dad’s death was not unexpected. He was 94 and had been in hospital for weeks. He had long expressed a wish to die because living had become such a struggle for him. He was suffering and eventually his body gave in.

Sometimes there is relief with death–that the person does not have to suffer any longer, that the person is finally at peace. Even in these cases, any death is still sad.

J. was planning to attend the funeral on her own because I was so unwell in the week prior. Of course I wanted to be there to support her, but I wasn’t sure I could manage the exhaustion of the long drive. There was no point in being there if J. would be distracted caring for me.

Then I received my magic red blood cells and so, on Friday, J. booked a hotel room, and we made the trek together. I was glad to be able to attend. The graveside ceremony was touching and thoughtful, and I got to know J.’s dad a bit better after his death. Following the ceremony, the extended family congregated to visit and reminisce. A few hours later, J. and I started our 4-hour drive home.

I must say that going to a funeral was not easy, given what my future holds. Still, my capacity to dissociate from emotion is tremendous when I am overwhelmed. I was largely stoic and focussed almost solely on supporting others that day.

Except when the casket was lowered into the ground. That was hard. I’ll admit I was not thinking about J.’s dad at that moment; I was thinking about myself and my own funeral. I always cry at funerals, but at that moment I was teary knowing that all too soon I’d be the one going six feet under.

I too will be buried rather than cremated because cremation is not the Jewish way. I too will be laid in a casket and lowered into the ground. I have never taken fondly to the whole burial notion though. As it is, I am always cold. I envision myself shivering in perpetuity, and especially if J. forgets to provide my long underwear. Then I remember that once I am dead, I won’t feel anything anymore. No hunger, no anxiety, and certainly no cold. That helps.

As we drove home, J. started asking questions about Jewish funerals and shivas because her knowledge is limited. Our bi-cultural marriage makes this discussion all the more critical. I should have told her that I was spent, and that this would have to be a topic for another day, but instead I became short with her. We’ll have to address Jewish funerals, and many more tough subjects, in the coming months, but I had exceeded my death threshold for the weekend. Next time, I’ll explain my reluctance, and I’m sure she’ll understand. There is a time for everything.

Two Jewish graves, one with stones on top

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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

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.

Variation on a blind date: Session #1 with a new psychologist

woman and man on date, woman looks bored while man is talking excitedly

I’m sure you’re all dying to know how my first meeting with the psychologist went last week. Rather than reveal the details of our conversation (boundaries, my friends), I’ll tell you how it felt to talk to her. I arrived there hopeful, knowing this woman’s training is with palliative types like me. Despite her expertise, the session felt off from the outset.

I was thinking afterward about how going to a first session with a psychologist is a lot like a blind date. Someone sets you up thinking you’ll hit it off. You set a first date and hope for the best. Sometimes it’s a match made in heaven, but other times you’re sorely disappointed. After that first date, or even five minutes into it, you ask yourself, “How could Ms. Matchmaker possibly think I’d like that person?” You have nothing in common, your world views are diametrically opposed, and you know you’ll never get that hour back.

Unfortunately, I’d liken my first session to a bad date. Although I don’t know how the psychologist felt about our time together, I imagine she questioned our future together as well. She made a few observations and interpretations that were so far fetched that I must have worn my disillusionment on my face, despite my efforts not to. I lost all hope when the psychologist suggested an intervention more commonly used with preschoolers or those on the autistic spectrum. As far as I know, I am neither. The conversation felt stilted, and I kept talking simply to try to salvage our time together. Sadly, our connection did not improve over time.

I do not blame the psychologist for the bad date; it takes two to tango. I know I am a difficult client. I am quick to judge, I expect an immediate and easy connection, and I want a sense that the therapist has the potential to understand me better than I understand myself. My hopes were quickly and profoundly dashed.

Then came that awkward moment: should we set a second date? Despite the obvious disconnection, the psychologist asked me whether I wanted to rebook. I hesitated a bit too long. I didn’t want to hurt her by suggesting maybe we should see other people. Instead, I took her card and fled, leaving the door open both literally and figuratively.

I am ashamed of myself for wimping out. Had I asked the psychologist how she’d feel if I dated one of her colleagues instead, I’m sure she would have facilitated an alternate referral. She’s a grown up, and she should respect her clients’ needs. I’ve had many clients over the years who haven’t taken to me. I know that if I take issue with their discontent, that’s my problem.

I may seek a private psychologist to talk to rather than contacting this psychologist for a referral to one of her colleagues. Call me a baby, but I’ve had more than my share of awkward conversations these past few weeks. I need a bit of time to get back on the dating horse. I know, time is the one thing I don’t have. Must you really remind me?

Put on your blue suede shoes, or your burgundy patent-leather brogues

Burgundy patent leather brogue

Can we end the week with a story about shoes? I’m not really asking, since I’m the one deciding what I write about here.

For three weeks now, ever since I received my death sentence, I’ve been thinking about a special pair of shoes constantly, and have wanted to tell you about them. Other more important matters have gotten in the way.

I bought a gorgeous pair of patent-leather brogues in Prague last spring. J. and I rarely shop on vacation, but these shoes were an exception. Europeans make such nice shoes.

I love my shoes. They are so comfortable–you know how important comfortable shoes are to me–and snazzy, and people can’t help but admire them when I don them. I am magically transformed into a fashion statement every time I put them on.

The only problem is I’ve barely worn my shoes since I’ve had them, maybe only 3 or 4 times in 8 months. They’re too fancy for everyday wear, and I don’t go out much, so opportunities rarely present themselves. This means that my favourite footwear has been languishing in my closet for months.

These shoes were one of the first things I thought about when the doctor told me I was dying (after I thought about the dying part, that is). I decided then and there that I had to start taking them out of the house. So what if they were a bit dressy for the occasion? I’d schlepped them all the way across the ocean, and for that alone they deserved to be worn. I would not die before they were properly moulded to my feet. I was determined.

My intentions were good, but then winter interfered. The blizzard came, and with it 35 centimetres of snow over two days, leaving high mounds of white fluffy piles in its wake. Then came the deluge of salt to melt the snow. I know better than to subject any good footwear to the caustic effects of salt. And then the temperature rose enough for the salty snow to turn to slush. Despite my best intentions, I refused to wear my unmarred shoes in these adverse conditions.

But yesterday, finally, I threw caution to the wind and pulled my shoes off the rack. J. had made a reservation for a day-after-Valentine’s-Day lunch at a lovely restaurant we’ve long wanted to try. My carefully coordinated outfit begged for my best shoes. So I put them on, and, avoiding all snow and salt and slush along the way, those shoes joined us for lunch. Boy, did they look sharp. Boy, did I look sharp in them.

I have several shoe-worthy outings planned for this weekend. Neither snow, nor salt, nor sleet, nor slush will stop me from wearing my favourite footwear. If you see me, be warned: that shiny patent leather is blinding.

So stop waiting until the time is right; just do it, whatever it is, now. Go to that yoga retreat, or book a coffee with that friend you haven’t seen in months, or take your dog across town to that fantastic off-leash park, or–drumroll please–put on your blue suede shoes. You never know when it’ll be too late.

One injection and my Olympic aspirations are over

Man shelving books from cart at library

Have you been watching the Olympics on television? Go Canada go! I haven’t been watching much since I have other pressing matters to attend to, such as improving my quality of life. That’s the term commonly used with end-stage patients like me. My quality of life could use some improvements of late, I admit.

I’ve been noticing an increase in my number of couch days. Couch days are those days when I am largely horizontal, and often napping, except when I move to the table to eat or head to the potty to…I’ll spare you the details. I’m not fond of couch days; I have a lot left to do in my remaining time.

I will be undergoing two specific interventions with the specific aim of decreasing my lethargy. Later this afternoon, while you are preparing a romantic dinner for two, I’ll be at the hospital receiving an IV iron infusion. I’ve been taking oral iron supplements for a few years already, but since my hemoglobin has started dropping, the doctor is calling in the big guns.

But wait, there’s more. I will also soon be starting on injections of synthetic erythropoietin. EPO, as you might know it, is a hormone produced by the kidneys that increases red blood cell production.

As helpful as this intervention will be for me, EPO does have a bad reputation. The higher red blood cell counts prevent fatigue, thereby enhancing the performance of endurance athletes. For that reason, athletes are banned if they’re caught artificially raising their EPO levels. Thereafter, they are allowed to compete only with the Olympic Athletes of Russia.

As soon as I receive my first EPO injection, I will be classified as a doper, and will become ineligible for the Canadian Olympic Team. What sport do I compete in, you ask? Well, none that are officially recognized by the International Olympic Committee yet. But I can think of several special talents that, were they recognized, would make me a gold-medal competitor.

Imagine an Olympic competition for library geeks, assessing mastery of the Dewey Decimal system. (Melvil Dewey is my idol.) Watch me shelve a huge stack of books in record time with my eyes closed! Doesn’t that sound like high-level sport to you?

How about my ability to dirty every single mixing bowl in my kitchen each time I bake one measly batch of cookies? Bet you can’t do that. One-bowl brownies? Who are you kidding?

Then there are my stellar grammar skills. Anyone can ace a spelling bee, but how about a grammar bee? Give me your subjunctives, conjunctives, and presumptives (I know, that’s not a grammar word, but it sounded good there). Not to sound arrogant, but I think I’d be a shoe-in for a medal. Whoops! Did I just dangle a participle? If need be, I’ll simply bribe the judges.

As you can see, my dreams of an Olympic medal are soon to be dashed. Even if I weren’t about to become a doper, the IOC does not yet recognize my unusual gifts. Oh, who cares? An Olympic medal was never on my bucket-less list anyhow.

Dying comes with unexpected perks

You know how much I love to look on the bright side. If I look hard enough, I can always find a silver lining. Take dying for example: it may seem like a real downer, but it comes with a variety of side benefits.

The day Dr. Blood Lite gave me The News, he suggested hooking me up with the palliative team, even though I might not need the team yet. (Palliative? Who me?) Not one to turn down such a generous offer, of course I said yes. Little did I know that the following day, I’d get a call from someone on the Pain and Symptom Management team, which is quite the euphemism. I had no idea who she was until she explained, “We’re also known as the Palliative Care Team.” Why is the Palliative Team afraid of using its real name?

We set an appointment for the following week, when I’d be at the cancer centre anyhow. J. and I met briefly with a palliative nurse practitioner and learned more about her team’s services. We agreed that I didn’t need the team’s support currently, but would welcome their involvement as my condition progressed. I may be palliative, but I’m not approaching the pearly gates yet.

The other service at my fingertips is a real live psychologist. No sooner did I admit it might help me to talk to someone than I received a call, and scheduled a session within a week. This Friday, I will be hoping to connect well with the psychologist assigned to patients just like me.

You may be wondering why I’d see a psychologist now. No therapist can prevent my impending death, so what’s the point? In the past, clients have often shared similar sentiments with me. “Why talk about my ex-spouse/dead parent/severely disabled child since there’s nothing you can do to change my situation?” All the more reason to talk, I say.

Yes, there’s nothing this psychologist can do to prevent my death, but maybe I’d still benefit from talking about my grief. I’ve had a very tough few weeks, as expected. Imagine having to tell your family that your death is looming. Then imagine having to tell your friends, and your dog. (Jelly is taking the news especially hard.) Imagine knowing you are going to abandon your beloved spouse, who has cared for you selflessly through your illness. Imagine knowing you can’t do anything to ease others’ pain because you have caused it. Sure, I feel helpless and hopeless and despairing some days.

Maybe I’d feel a bit better if I could talk about these issues with a therapist.  Maybe I wouldn’t feel so down, or so scared, if I weren’t trying to manage my feelings on my own. God knows I could use more sleep; fatigue and insomnia are horrendous bedfellows. I may know how to help others through their grief, but I can’t be my own grief therapist. This psychologist has been known to need a psychologist on occasion. Like now.

I expect other potential support services for dying people will reveal themselves over time. It will be a comfort to know what’s available, and I’ll be open to anything that might help. So will J. I believe we deserve all the support we can get.

Quote: Grief is like the ocean. It comes in waves, ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.

Preparing for the end of my life: the bucket-less lists

If you’ve followed my blog for a while, you know that I abhor bucket lists. Once everything on the list is completed, either you have to add items or die. That’s why all the aspirations I’ve had in my life have never hung out in a bucket.

I am not without lists, however, and all the moreso since I received my bad news. First, there’s the list of things I probably won’t need to do over the next year. I can’t see myself needing any new clothes, and I probably have enough toiletries stockpiled to see me through. Think of all the time I can devote to other activities I find more pleasurable, like napping.

Then there’s the list of tasks hanging over me, ones I’d prefer not to do, and my long-neglected filing is only the tip of this iceberg. I have to notify the college that I’m not renewing my psychology registration this year. Tears may be shed, but the time is right. Then I have to cancel my library holds so piles of books aren’t waiting for me unclaimed after I die. I must get my taxes in order and be up to date on my paperwork so J. is not left with a mess after I die. I will make her a list of all I can’t do before I die, like cancelling my supplementary health care. I’m sure she’ll appreciate my organizational skills after I’m gone.

This leads us to the good list, that of things I really want to do before I die. Travel out of the country is not an option, as you know, but I fulfilled my wildest dream during our recent trip to Israel. Following my leukemia diagnosis, I’d never have thought I’d be stable enough to go so far.

Since travel is out, I need to think of other possibilities closer to home. So far everything I’ve come up with is food focussed. (I am no more surprised than you are.) Maybe one night we’ll go crazy and order in pizza or Chinese food. Maybe we’ll go out for lunch or dinner to a hot new restaurant in town like normal people. The possibilities are endless.

My food ventures will not be limited to restaurants, however. There are so many meals I want to make before I die, so many baked goods to perfect. Time is running short.

I’ve always been a lazy baker. My repertoire is limited to cookies, squares, and muffins, with the odd cake thrown in. I leave the finicky items for people who know what they’re doing.

I was perusing advanced baking classes in town because it’s never too late to acquire a new skill. Lo and behold, I came across an offering in which we’ll learn to bake danishes, croissants, and brioches. I’ll be attending knowing I’ll never bake these items again; I simply want to reach the pinnacle of baking once in my life. These days, that is reason enough for me.

I’m told I’ll arrive home with mounds (note I didn’t say “bucketfuls”) of freshly baked wares. Feel free to drop by for a treat later that day. I’ll be napping after all that hard work, so please leave me one cheese danish. Thanks.

Picture of two baked cheese danishes

No need to panic. We’ve got time.

Man's hand holding stopwatch

You must be dreading my posts lately. How long can I focus on my mortality without a break? I promise you a reprieve from all this seriousness come Friday, but today is only Wednesday. Please understand it’s taking me some time to process the news of my impending demise.

I hadn’t considered how overwhelming sharing this bad health news would be. There have been so many people to tell, and I’m only just beginning. Beware those acquaintances who ask me how I am. They will live to regret it.

I find it hard not to cry when I tell my story, yet I try to hold it together for others’ sakes. It’s ridiculous for me to try to shield other people from my distress, but that’s me. As a helper, not a hurter, the last thing I want to do is to cause another person pain. Still, I’m upsetting others wherever I turn, and I can’t do anything to soften the blow. That pain may only escalate as my health deteriorates.

I’ve shed many tears over the outpouring of love and support we’ve received. People near and far are reaching out, eager to help in whatever way they can. I shouldn’t be surprised by these loving responses to my news because we are surrounded by mensches.

Dealing with death is not new to me, although I’m the one dying this time. I’ve experienced that urgency to tell the dying person how much our relationship has meant to me before I lose the opportunity. When the person has died suddenly or unexpectedly, I haven’t always had that chance. In those cases, I could only hope the person knew how I felt, and that I’d found ways to express my affection during our times together.

As the one whose health is failing, my perspective on telling the dying person how I feel has shifted. Since I’ve gotten my news, as much as I appreciate others’ warmth toward me, I’ve been fixated on what I need to say before I die. Would I have the opportunity to tell my people how much they’ve meant to me? If I didn’t get to everyone before I died, would they know?

Why do we wait until death looms to tell others how we feel about them? It would make more sense to affirm our relationships along the way so we didn’t feel the pressure to connect once time got tight. Since I was diagnosed with leukemia several years ago, I’ve tried to share my feelings for others freely out of fear I wouldn’t have the chance later. Maybe you think it’s weird that I tell you I love you before I hang up the phone, or that I close my letters with so many Xs and Os. Think I’m weird if you must, but I’ll hope you’ve gotten the message nonetheless.

Now that this news is sinking in, I’ve realized there’s no need to rush. My death is nearing but not imminent. For all I know, the clock on my final year hasn’t started ticking yet. We’ll have time to say what we need to say to one another. If we don’t, I’ll still know how you felt. I think you’ll know how I felt too.

When you say nothing at all

As you can imagine, it’s been an exhausting week. Having to share my bad news with people has been difficult. I’ve tried to provide some information in my blog so I don’t have to answer too many questions. Repeating the same story ad nauseum is exhausting at the best of times, let alone the worst of times.

I’ve had a variety of responses to the news. The large majority have been comforting and helpful, especially since it’s so hard to know what to say. Talking to me about my dire prognosis can’t be easy. Some days even I’d rather talk about the weather, but I can’t seem to focus on the weather right now.

You can stop worrying that you’ll make things worse if you bring up the topic of my death. I can assure you that you will not. You can’t possibly make me feel worse than I do right now, whatever you say. Okay, maybe you could. Even if you’re thinking these things, please don’t tell me I brought my death on myself by eating too many Jelly Bellies, or that I’d have been spared had I had only found God. I trust you won’t blame me for my predicament because we both know that my deadly genetic mutations are not my fault.

Are you worried you’ll start crying if we talk about my future? Worry not, dear friend. Cry your heart out. What a better way to show me that you care, that my life has had some meaning to you, and that maybe you’ll even miss me when I’m gone? In the depths of my despair, I worry that no one will miss me at all; that, in fact, the universe will heave a huge sigh of relief. Your tears could convince me otherwise.

You may feel a need to cheer me up. If so, give that one up. There’s not much that anyone can say to soften this blow. You can’t take my fear for the future away, however much you might want to. What you can do is to be there to support me for the duration.

On that note, please don’t ask J. how I’m doing; I’d rather you ask me directly. I’m fully capable of answering even the hard questions. If you want to ask J. anything, ask her how she is doing since she’s got quite the burden on her right now. She could certainly use your support, now and in the future, since she’s the one who’s going to be left behind.

Thanks for acknowledging what I’m going through in whatever way you can. The elephant is in the room, and it will be here with me for the duration. If you pretend none of this is happening, I’m going to feel terribly lonely, and I know you wouldn’t want that for me.

Talking about death is scary. I wish my dying didn’t force you to face your own mortality, but maybe it’s for the best. You’d hate to be caught by surprise like I was.

Once we’ve got the heavy stuff out of the way, let’s do lunch. I’ll choose the restaurant. There are so many places I want to try before…well, you know.

Indian feast--butter chicken and naan on table at restaurant