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 a quick 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 have another 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 date 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?

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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 the 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 used. 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 days.

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 up 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." Vicki Harrison

 

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

If you’ve followed my blog for a while, you would 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 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

 

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.

Several hands petting Jelly as she lays on the floor, head raised

You are not going to LIKE this post

thumbs down emoji

I created this blog as a way of sharing news about my health. When I first started writing, blogging seemed an effective way to keep people in the loop. Thanks to your diligent readership, the blog has helped me feel connected with you.

It can’t have been easy to read my posts sometimes. You have joined me on the ups and downs of my cancer roller coaster, sharing your wisdom and words of support. You’ve laughed at my jokes, which I realize are often funny only to me. You’ve stuck with me as I’ve muddled through both physically and emotionally. I couldn’t have asked for more from all of you.

You know my worries about my health have been rampant of late. I was hoping that my concerns about my recent bone marrow biopsy were unfounded, that my anxiety had gotten the better of me, that I was facing a challenge that was surmountable. Unfortunately, I was wrong. My story will not have a fairy tale ending today.

The results of the biopsy were not good. The fibrosis in my marrow has increased significantly since it was last assessed three years ago. The more scarring there is, the less space is left for healthy blood cells to be produced. This progression explains my recent anemia and my drop in platelets. Unfortunately, as the fibrosis continues to take over my marrow, my body will have increasing difficulty producing blood cells.

All is not lost, however. With the help of a red-blood-cell producing hormone and IV iron infusions, my red blood cell counts should improve in the immediate future. This will help me to feel less fatigued, thank goodness. I will also receive the occasional whole blood transfusion as needed. The doctor has reassured me that my low platelet count is manageable. We’ve agreed to my abstaining from touch football and full-contact hockey for now.

Sadly, my health will continue to decline from here. At some point, there will be no more room in my bone marrow for the creation of blood cells. The methods I described of raising my red blood cell counts will no longer be effective. I will feel increasingly unwell, and yes, I will die.

The doctor asked if I wanted a time line. However anxious I am, I find not knowing much more stressful than knowing, so I said yes. He believes that I have a year or so left to live. This may not seem like much, but for me it is an eternity. I’ve had the fear of death hanging over me since I was first diagnosed with polycythemia 18 years ago, and I have outlived all predictions. Now I will be grateful for however long I have and will do my best to relish every moment. So will J.

There is so much more to tell you about what I’ve learned and what the next steps are, but I think this post has been heavy enough for one day. Furthermore, I rigidly adhere to my 500-word post limit no matter what. Thanks as always for reading. I’ll continue blogging for as long as I can, and hope you’ll stay on board. I could use your support now more than ever.

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.