What [inappropriate thing] would Annie have said?

Not long ago, my fourth blogaversary and 600th post passed without fanfare. I can’t believe I missed an opportunity to laud my accomplishments; I must have been distracted by other matters. I’ve told you all many times how grateful I am for your keeping in touch through my blog. Your reading has spared me recounting difficult news, especially of late, to each of you individually. I plan to keep you in the loop of my life by writing for as long as I can.

Lately I’ve been thinking about how my life is going to end soon, and how the story I’ve been telling over these four years will end with it. In my blog, I will continue to share my difficulty accepting my prognosis, the end-of-life decisions I have made, and other honest details of my decline. I imagine you may regret my oversharing, but you’ve kindly hung in there with me.

Lately, I’ve been sad thinking that you will know the end of my story, but I won’t know the end of yours. I want to be there to see how your life turns out, but I won’t be. I think of all my beloved nieces and nephews who are nearing or already settling into adulthood, and I will miss watching their lives flourish. If they get married or have children or flourish in other ways, I will not be there as witness. I’d like to think I’ll be cheering from above, but will they be able to hear me?

And if any of you experience hardship, I won’t be there to offer comfort, as you have done for me and J. so magnificently through my illness. I won’t be able to lend an attentive ear or drop off a lasagna or just be there, to do what good friends do. I’ll be leaving you high and dry.

When I was helping a client through grief, I’d often try to bring the person they’d lost into the room with us. No Ouija boards or empty chairs, but we’d talk about the person. I might ask, “What would your (now-deceased) loved one say about your current breakup/job struggle/pregnancy?” Some clients thought I was crazy, but others took comfort in imagining how their beloved might have supported them through their struggle. Conjuring up that person’s voice when they were stuck helped them move forward.

And so I wonder, could I be that voice of love and support in your ear after I’m gone? If you are feeling low or alone or upset, could you imagine how I might comfort you? You know I’d want to be there, and I’d be overjoyed knowing I might help you muddle through, even after I am gone.

I realize that trying to enlist my help after I’ve died may backfire altogether. There’s the risk you may conjure up Loose-Lips Annie, who has blurted out countless inappropriate statements over her lifetime that she wishes she could retract. Hopefully not, though. I’ll try my hardest to contain my overly blunt persona, even from the great beyond. That is, unless I think you could really use a swift kick in the pants. Then all bets are off.

Basset hound on bed comforting person in hospice


Blood, spots, and tears

Mark Twain's quote: Denial ain't just a river in Egypt.

I think we need to clear one thing up. I’M NOT BRAVE. J. is the brave one. She’s the one who’s facing this loss head on, she’s the one who’s going to be left after I’m gone, and she’s the one holding everything together, except when she’s not, which we can all appreciate. Her plate is much fuller than mine.

Sure, the meetings with the rabbi and the funeral director last week weren’t easy, but they were comforting. This week we’ll talk to a community nurse about what the end-of-life placement options are. Will a hospice be better for me, or a hospital, or do I want to die at home? This too will be a hard discussion, but we both need the information to be able to make informed decisions when the time comes.

If you think I’m handling this well, you’re somehow missing my denial. I don’t really believe my death is imminent. I don’t mistrust my doctor; I just don’t feel like a dying person. In fact, this past week, I’ve felt better than I have in some time. No wonder the optometry assistant didn’t grasp what I told her last week; I don’t look palliative, or at least not to the average Jane.

If you look a little closer, you’ll notice my colour is a bit off, and I sport an ugly bruise on my hand that is getting worse rather than better. The rest of my body’s decline is well hidden, mostly under my clothes. Don’t worry, I won’t show you; I haven’t lost all sense of decorum (yet). I’ll just tell you about it all in vivid detail.

My critically low platelets are leaving their mark. Small children would cry were they to see me in a bathing suit. I am covered in large ugly bruises over my limbs and trunk. Over the past few weeks, I’ve also developed red spots of various sizes and shapes. An unyielding waistband, a shoe that is too tight, the arms of my glasses–all of these minor contact points have the potential to spotify me. If I deign to scratch an itch, the evidence of my negligence is imprinted in my skin.

Blood vessels in my mouth are having a heyday as well. I can wake up with a huge burst vessel on my cheek or my tongue that makes eating a challenge. Don’t worry, nothing stops this gal from eating, and the pain and discomfort pass within the day. What is more troublesome is that this is but one of many constant reminders that my body is ailing.

Sometimes I am overwhelmed by all these visible signs of my illness and, yes, I start crying. The tears are close to the surface lately. ((I hate to admit that sometimes denial fails me.) Crying is a huge problem because I am dealing with near-constant nosebleeds as well, and a good cry inevitably gets my nose flowing again.

I’m sure you’ve seen the commercial, “Do you pee a little when you laugh?” Well, it turns out I bleed a little when I cry. So I’m just going to have to turn off the tap already. If I’m feeling well, however marred my body, I must stop weeping and start living. I have no time to waste.


I’ve always worked better with deadlines

Picture of gate into Jewish cemetery

Deadline is a funny word, isn’t it?

All I need is a deadline looming to spur me into action. I have one now, a final one, with no extensions, and lots left to do before it arrives. Boy have I been busy this week! It’s a good thing I got those two pints of red blood cells earlier this week.

Yesterday we met with the Reform rabbi whom I’m hoping will conduct my funeral even though I am not a member of his congregation. I’ve heard only good things about him from those who know him. He was as wonderful in person as he’d been described. I was surprised to learn that wanting to meet the person who will officiate one’s funeral is unusual. Wouldn’t you want to know the person who’d be sending you off? My goal was not to vet him but to know he’d be willing to take the job. He reassured me that he would.

I also wanted him to meet me. How many funerals have you been to where it was clear the officiant knew nothing about the person who’d died? I don’t want an impersonal ceremony. Sure, it was a hard meeting, and tears were shed, but moreso, J. and I were both deeply comforted.

Today we met with the lovely Jewish funeral director and visited the cemetery adjoining the funeral home, where I will ultimately be buried. I would like to choose my cemetery plot, although I’m hoping my spirit will reside elsewhere. Maybe you could all hold on to a bit of it after I’m gone? Just take the parts you like and leave the rest for the worms.

The director explained the process from death to burial, and made himself available for future questions. I was so relieved to hear about the openness of this organization to Jews at all levels observance. Like the rabbi, this fellow did not bat an eye at J.’s presence as my wife.

Finally, and less critically, I dropped by the optometrist’s office to return those contact lenses I’d recently purchased, figuring I likely wouldn’t need them. When I told the assistant I wanted a refund–I spared her an explanation of why–she seemed unusually miffed. She scurried into the back, returning a short time later with a colleague, who questioned my request. Why I was returning lenses that had worked so well for me for so long?

I was trying to spare the ladies my reality, but you know what happens when I’m pushed: I’m honest. So I told her, “I will not need them because I am dying. I won’t have sufficient time to use them.” She then cheerily refunded my money while her colleague looked on sheepishly. As I was leaving, Ms. Refunder said, “Hope to see you soon!” Did she mishear me? Her response was as insensitive as last week’s letter from the psychology college, I’d say.

Anger, anger, go away. You’re not helping matters. Better to focus on gratitude for these two lovely men who will guide us through this process of death and dying. Thanks to them, we both feel supported and comforted as we head into the final stretch. With so little control right now, we’re grateful to be able to make some, any decisions for ourselves.

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….

TMI Guidelines for the Dying Person

yoga class women cross legged eyes closed

Every Sunday morning for the past 10+ years, I have been going to yoga. I have to be out of town or deathly ill to miss a class. Over the years, a community has developed in this class, people who know each other if not by name then by face, who greet one another and struggle together.

This past Sunday, despite how important this class is to me, I almost bailed. I had a low-grade fever, I was physically exhausted, and I simply wasn’t up to it. But I went anyhow because I’m rigid. Every pose felt hard, and I had to modify occasionally to prevent bruising, but I muddled through. I can’t say I felt invigorated after the class–any physical activity is exhausting these days–but I was glad I went.

After class, one of the women who has been part of the Sunday community for years, who left to have a baby and recently returned, approached me as class ended to ask me how I was. It was an innocent question asked out of kindness. Although we’d chatted often over the years, I had never disclosed my health challenges to her.

Maybe because the class had been hard for me, maybe because I was feeling sick, maybe because my declining health is preoccupying me, I responded honestly. I said, “I’m palliative and it’s been a struggle lately.” What a way to kill the calming effects of that yoga class. She responded appropriately and kindly, if with shock. When someone asks, “How are you?” how often is “I’m dying” the answer? She said she would pray for me, and she meant it.

I could have just said, “I’m fine.” Was it fair for me to dump my reality on her? She doesn’t know me well, and she was not expecting that. But if I want support from people, even those I don’t know so well, I need to let them in. I didn’t belabour my point and, as is my nature, I quickly changed the topic to her baby, but I doubt that’s what she was thinking about.

Within minutes, another kind woman from class asked me how I was as I left the room. By this point, I was a little overwhelmed so I told her I was unwell but couldn’t talk about it. She accepted that, but we crossed paths again as we exited so I called to her. I apologized for mishandling her well-meaning question and told her that I was dying as well. She too was warm and supportive, but because she knew I’d had leukemia, she was less surprised.

What qualifies as too much information when you’re dying? I’ve decided that nothing does. I’m not going to start telling strangers about my impending death, but to tell people I know that I’m fine when I’m dying feels unsettling. Isolating.

I take comfort in knowing that there are two more people in Sunday’s class who know of my declining health. When I stop coming to class altogether, they’ll know why I’m absent. Who knows? Maybe they’ll even miss me. More likely, they’ll be glad my spot by the wall is finally vacant. I’ve been occupying prime real estate in that class for years.

I was hoping to skip the anger stage altogether

In and out character Anger raging mad, fire coming out of his head

I’ve written before about the many stages of grief. I’m a pro at denial, and encourage you to rely on it liberally when death is staring you in the face. I’ve acknowledged sadness, albeit reluctantly. Bargaining is my favourite. “If I don’t eat any more Big Macs, may I live an extra month?” I’ve even had moments of acceptance, and the calm that they bring, but they are fleeting.

I haven’t forgotten anger, but I’d planned to skip it altogether. Being angry seems such a waste of my limited time. It’s not a place I want to linger. I’ve had angry moments, but I’ve moved through them and tucked them away.

Then I received the good-bye letter from our professional college, of which I’ve been a member in good standing for 24 years. A few months back, I had informed the college that I would not be renewing my membership when it came due at the end of March. I had a brief exchange with an administrator who confirmed that she would ensure my request was forwarded. The process was actually easy, if heart wrenching.

The letter I received this week confirmed my withdrawal from the psychology register. It couldn’t have possibly been more impersonal. Since it’s not very long, I’ll reproduce it for you.

Dear Dr. Doe:

Re:    Removal from Psychologist Register by Request

(Hang on to your seats. It gets really personal from here.)

In accordance with Section 43(5) of the Health Profession Act, the College has accepted your request to remove your name from the register, thereby canceling your registration as a Psychologist in the province effective April 1, 2018.

We wish you all the best in your future endeavors.


Dr. Registrar

For some reason, this letter made me screaming mad. I’ve been composing my bitter response all week. Please allow me to share it with you.

Dear Dr. Registrar:

Let’s ignore the fact that the Act you are referring to regulates many professions, and is in fact called the Health Professions Act. I thought you might have known this, but, oh well. Thanks for the bold-faced Psychologist, in case I’d forgotten my professional designation. I may be dying, but thus far I’m cognitively intact.

I’m wondering, though, are there people whose requests to leave the register you do not accept? And under what conditions are such requests denied? Considering this, I’m so grateful you’re letting me go to greener pastures, literally.

Your closing sentiment wishing me all the best at my future endeavors was the cream cheese icing on the carrot cake. I imagine your administrator did not inform you that I am ending my registration due to ill health. As such, my future endeavors involve trying to stay alive. I hope to be the best dying person I can be, but I don’t necessarily consider this an “endeavor”. You may want to consider that not all former registrants go on to bigger and better things.


Dr. Annie Doe

I realize my anger is much more about dying than the form letter I received, and that’s why I’d never forward my response. But let me blame Dr. Registrar for a few more days, okay? I’m sure my denial will kick back in soon.

All I wanted was a week off cancer :(

Basset hound outside on leash

After three consecutive Tuesdays spent hanging out at the cancer centre, I scored a reprieve this week. I was granted 5 whole weekdays to do with what I chose, except for Monday, when I’d take a jaunt to the lab for blood work. Otherwise, I had a brief respite to make plans, have a life, and forget I had terminal cancer. (A dying person never forgets.)

Then disaster struck. (I’m being a touch overdramatic here.) Early Tuesday morning, I got the dreaded call from the hematology clinic. The nurse’s opening question was, “Are you bleeding anywhere?” Sure, my gums were leaky despite my extra sensitive tooth brush–good decision not to see the dentist–and I’m covered head to toe in bruises. I know what this means, as should you, if you’ve been paying attention: my platelets are precariously low yet again.

I must admit I was surprised by this news. I had bet with J. that, if anything, only my hemoglobin had dropped. I’d been napping daily, and deeply, over the past week. I lost the bet. I’ve got the same number of red blood cells I had last week. I should be happy that my hemoglobin is holding steady, but I’d rather not hold steady where I’m at. Within this range, I feel anemic, but I’m not quite low enough to warrant a red-blood-cell transfusion. Consider me in hemoglobin purgatory.

The nurse suggested I come in immediately for a platelet transfusion. I boldly asked her if I’d die if it waited until the next day. You see, I’d had the gall to plan some activities–a dog walk, a Pilates class I love that conflicts with my cancer centre appointments, and coffee with a dear friend I’ve been missing. Sounds like a perfect day in the life of a dying person, doesn’t it?

After I hung up, I told J. I wanted one full week where I could pretend I didn’t have cancer. She doubts I’m going to have any more weeks like that, and she’s the optimist in our relationship! She’s probably right.

I fear my life may be all about cancer for the duration, with frequent visits to the cancer centre, last-minute transfusions, and other random medical interventions. I need to get my head around that, but I don’t really want to.

Still, I’m going to hold on to whatever normalcy I can despite the chaos of cancer. When I’m told to jump, rather than automatically asking, “How high?”, I may occasionally ask if there’s room for negotiation.

The nurse agreed to ask Dr. Blood Lite if I could safely delay my transfusion until the next day so I wouldn’t have to cancel my best laid plans. She actually sounded relieved that she’d have more time to organize my transfusion.

I had a lovely day yesterday, although I’m regretting the Pilates class. Attending a class like this is tough at the best of times, and this is not the best of times. Add on the dog walk, and the coffee and I wore myself out. Today I am recuperating from all that frivolity, and tomorrow I will receive platelets since there was no room today. I’ve even lived to tell the tale.

Regrets, I’ve had but one.

Open mouth with dental mirror inserted

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

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

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

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

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

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

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


Restaurant review: The Golden Arches

Big mac laying on french fries

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

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

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

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

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

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

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

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

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

Partaking of the forbidden fruit

Whole grapefruit and cut into parts

Were I a more diligent Jew, I’d be depriving myself of leavened bread through the 8 days of Passover, along with my fellow tribe members. But I haven’t been diligent. Apologies, Almighty, I have failed you in so many ways. Bread is merely the tip of the iceberg.

Yesterday, J. and I dropped by the specialty grocer and were inundated with generous samples. Cubes of roasted maple ham, bacon and avocado panini bites, need I say more? Then we enjoyed a delicious Easter dinner with friends. The menu? Pancetta-wrapped pork roast. I could have refused it all, but I didn’t. Leavened bread aside, I’ve also broken the no-pork-over-Passover rule. I am a sinner, not a saint.

This is not the subject of my post, however. I wanted to write about the real forbidden fruit. I’m speaking of grapefruit. For 5-1/2 long years, I have been on CML-busting medication that interacts with a compound found in grapefruit. For those 5-1/2 years, I have been grapefruit free, barring the occasional grapefruit Jelly Belly or wine gum. I lapsed once, relishing one piece of J.’s freshly peeled grapefruit, but otherwise, I have heeded orders of complete abstention.

Through the many recent changes to my medications, I wondered whether I had eliminated all the drugs that made grapefruit my forbidden fruit. I stopped by the pharmacy to inquire, and my trusty pharmacist reassured me that I could again safely consume grapefruit. Hallelujah! Grapefruit, here I come.

Do you know what happens when I’m told there’s something I cannot eat? I want it more. I crave it desperately. I can’t imagine my life without it. Until, eventually, my preoccupation wanes and I move on. I understand a smoker can feel this way years after quitting, as can an alcoholic who has long stopped boozing.

When the pharmacist confirmed that grapefruit was off my no-eat list, I headed directly to the produce section of the supermarket and assessed every single grapefruit until I found the best one there. Unfortunately, prime grapefruit season has passed, so the pickings were slim. Most of the remaining fruit were shrivelled and old, but there was one perfect specimen with a nice thin shiny skin. So I bought myself this gift of grapefruit, brought it home, and snarfed it down.

This first grapefruit was almost perfect. It was delicious and sweet, but sadly it was overripe and mushy. Grapefruit needs a bit of texture, don’t you think? If I’d wanted juice, I could have bought juice. I tried to focus on the taste rather than the texture, but I admit it was a letdown. Truth is, my prohibition has lifted as grapefruit season is ending, and that grapefruit is probably the best I’m going to find over the next several months.

And so I must ask you a small favour: next time you’re at the grocery store, would you look for the freshest, shiniest, tastiest grapefruit you can find? If you love me, you’ll buy it and drop it off at my house. I’ll be forever grateful.

As far as I know, there are no prohibitions against eating grapefruit over Passover. So eat it I will, with no fear of reprisal. Who knows? Maybe it will curb my craving for pork.