There’s no way to stop a ticking clock

Clock is ticking with sand timer

Remember when I used to joke about whether this was my last Hanukkah, or Passover, or Rosh Hashanah? I’ve stopped joking.

When Dr. Blood Lite told me I had one year to live, I forbid myself from becoming preoccupied with the clock ticking down my days. A few months have now passed since I received this news, and I’ve been trying to live in the moment rather than focusing on what’s down the road. I’m a realist, though, remember?

I realize no one knows exactly how long I will live. The doctor has given me his best estimate because that’s all he can do. Only time will tell. Maybe it won’t be 365 days, but 364 or 366, or 300 or 400. When I was first diagnosed with polycythemia, I thought I’d be dead within 10 years, and here I am 18 years later. My diagnosis with CML, although scary at the time, turned out to be a minor blip in the story of my health. I know I should be focussing on all the living I’ve done since I’ve been sick and all the living I have left to do, rather than the fact that my life may end sooner than I had hoped.

Then Passover came, followed closely by Easter. This year is supposed to be about creating memories, but last weekend all I could think about was whether I was celebrating these holidays for the last time. All my efforts at living in the moment failed miserably.

I gave myself permission to be sad, which I have to do sometimes. Sad that next year’s Seder would go on without me there to participate. Sad that I’d never again be able to hunt for Easter eggs like all the other preschoolers. I’ve heard of dying people celebrating Christmas early; I guess I could do the same for my favourite holidays as well, but I wouldn’t be fooled.

The thing about being told I have one year to live is that every milestone that passes in that year is potentially my last. Holidays, anniversaries, birthdays, even seasons–any of them could be my last. If my doctor’s prediction of my life span is accurate, I’ll probably live through my 55th birthday next October, but my 56th is unlikely. I should be around for our 6th anniversary this June, but likely not our 7th the following year.

Let’s return to the Seder. Although I was not the designated afikomen seeker–that’s assigned to the youngest person present–I bullied the rightful one into allowing me to conduct the search, figuring it would likely be my last chance to do so. Thankfully, others who were more observant than me guided me to the hidden stash using the red-light/green-light method. This method is effective with toddlers and spacey people like me. Even with this help, the young’un had to rescue me in the end, since, despite all her expert guidance, I still came up dry as a piece of matzah. It may have been my last chance to find the afikomen and I failed miserably.

I will try to create only happy memories in my final year, but some days, I’ll be mourning what’s potentially my last kick at whatever can I’m facing. I thank you in advance for being patient with me.

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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.

My drugs they are a changin’

Cartoon basset hound walking with frisbee in mouth

After my last post I was inundated with comforting comments, texts, and emails from far and wide. Have I mentioned how blessed I am to have such a warm community of support? I don’t know what I’d do without you guys. However hard it was to share my sadness, I don’t regret doing so.

I was a bit disappointed, though, that no one commented on my crying Saddy image. I was quite proud of my first GIPHY. It’s not too late to teach this old dog new tricks, so long as they’re easy ones.

Speaking of old, when I was out shopping today, the cashier spontaneously offered me a seniors’ discount. I wondered if I looked especially palliative to her. And I’d thought I was having a good day….

This brings us to yesterday’s appointment at the cancer centre, which was an improvement over the last few. I needn’t have fretted about what Dr. Blood Lite might find in this week’s blood work. There were even a few positives. My hemoglobin is holding steady, which I can tell–my energy has been much improved this past week–and my platelets are a smidgen higher than last tested. This means my brick-like spleen baby did not devour too many of my healthy blood cells this past week.

These findings warranted a number of medication changes. I am eliminating my steroids because they are not increasing my platelets as much as the doctor had hoped. This means that I can no longer blame my persistent crankiness on this medication. Time to start owning my irritability.

My performance-enhancing hormone, EPO, has been doing such a good job at eliminating my need for red-blood-cell transfusions that Dr. BL is trying to figure out whether I need it at all. He has suspended further injections for now. So much for a sustained increase in athletic stamina.

Dr. BL also suggested a vacation from my TKI, the targeted medication that destroys my CML cells. TKIs, like many chemotherapies, reduce all blood cell production, good cells and bad. When my platelets first started dropping a few months back, Dr. BL suggested a TKI break to see whether eliminating this drug might help increase my blood-cell counts.

The TKI has managed my CML effectively for so long that these mutant leukemia cells have been barely detectable in my blood for years now. Coming off the drug for a month or two is safe, from what I understand. Dr. BL reassured me that if my CML cell counts rise without the drug, I will get back on it and it will get back to work. Eliminating any potentially unnecessary medication is worth a try, especially if doing so will reduce my nosebleeds and bruising and the other annoyances of an inability to clot.

Next time you see me, you may be surprised to encounter an energetic, upbeat senior who, unfortunately, may not be able to keep pace with you on your next marathon. Still, feel free to hug me at the finish line, if I ever get there, taking care you don’t squeeze me too tight. Then we can go for coffee. But don’t even consider inviting me over to hang out on your white couch. Some days I’m still a bloody mess.

Is it time to change my outdated blog title?

twisted cord with beginning and end untwisted, muddling in middle twisted

Dear Powers That Be:

In addition to the death sentence you handed me a few months back, you had the gall to give me a post-vacation cold? Do you really think I want to spend any of my remaining time blowing my nose and coughing through the night? I’ve accepted the deadly illness. Least you could do is give the cold to someone healthy.

With heartfelt irritation,

Annie

Now that that’s off my chest, we can return to the matter at hand. My blog was first published under its current name, Muddling Through Leukemia. The name came to me in a dream (not really) and it’s worked. I’ve had no desire to alter it in any way for four years. But times have changed, as you know.

I’m not really muddling through leukemia anymore. CML is the least of my worries. Nor am I muddling through polycythemia. In fact, what I’m dealing with is a rare bone marrow disorder known as myelofibrosis. Ever heard of that?

Myelofibrosis and polycythemia fall in the category of bone-marrow disorders known as myeloproliferative neoplasms. (Try saying that quickly three times.) Polycythemia may transform into myelofibrosis over time. Myeloproliferative disorders are a subtype of blood cancers treated by hematologists using the cancer-fighting arsenal. More internet research might help me better define this category of disorders for you, but you know how much I abhor internet health research, especially since everything I’d look up now would be dire. I do know that people with these disorders all have wonky bone marrow, so that’s enough for me.

I have described myelofibrosis to you previously; I simply neglected to name it. Remember that day I received my one-year notice, when Dr. Blood Lite confirmed the increase in fibrous tissue in my bone marrow? He was telling me that my polycythemia had transformed into myelofibrosis.

I must say that Muddling Through Myelofibrosis has a nice alliterative ring to it, and you know how I love my alliteration. Muddling Through Myeloproliferative Neoplasms almost rolls off the tongue, but no one would have any idea what I was talking about. Also, there are several disorders that fall in this category so it’s a bit broad.

I’ve decided, despite what I’m dealing with, that I’m too attached to my blog title to change it now. Muddling is what I’ve been doing for years, through life and anxiety and health crises and now even through dying. If I change the blog’s name, I’ll be abandoning all those people who search the blog by title. If they can’t locate me, they’ll think I’ve died already, and I’m not dead yet. Plus no one will have any idea what myelofibrosis is, except for you, my faithful readers, so who’d want to read about something they’d never heard of?

That’s why I’ve decided to stick with my inaccurate blog title for the duration, trusting you can make the leap to my current reality. Sadly, it’s also possible that my title will regain its accuracy some day, if I am one of the 12% of patients with myelofibrosis whose illness becomes Acute Myelogenous Leukemia (AML). I’m told AML is no party, so let’s not even go there yet. One step at a time.

The last time I [insert activity here]

Woman holding dental floss in front of blurry face

I bet you can imagine how little I want to complete my taxes this year. Why would I want to devote my time to such an annoying, exhausting task? My usual search for distractions has been less successful this year. There are so many activities that I no longer need to do, ever.

For example, last Friday, to avoid my paperwork, I accompanied J. to the optometrist. She had an appointment, and my glasses needed adjusting. Then I ordered 6 months’ worth of contact lenses since I’m running low. Will I need 6 months’ worth? I’ve been awfully tired lately, and when I’m bushed, the last thing I want to do is shove plastic disks in my eyes, knowing I’ll be removing them within a few hours so I can nap.

As I was at the optometry office, I didn’t even look at all the new frames. Why would I now? I have two perfectly suitable pairs of glasses that will not need to be replaced before I die. My frame search is over, forever, for me.

That’s only one of the activities I have no more need for. I have enough clothes in various sizes to get me through, so clothes shopping is officially in my past. I think I’ve stocked piled enough toiletries to last for the duration. I have scheduled a hair cut this week. How many more of those will I need?

Then there are my trips to the beloved library. I have limited time left to read, so what should I take out? For sure no more self-help books to guide me through death and dying. I think I’m dying quite well without help. Should I cancel the high-demand books I’ve placed on hold behind 300 other avid readers, knowing I’ll never reach the top of the list before I expire?

I am filling a small portion of this reclaimed time by considering who to bequeath my remaining possessions to (I’m speaking here of the items that J. will not need). I’ll never use up my remaining dental floss, and J. is not a flosser, so is anyone running low? I have several tubes of sunscreen. Since skin cancer can’t possibly kill me faster than my bone marrow will, maybe someone could use my stash? J. refuses to use sunscreen, despite my persistent nagging.

Come to think of it, will someone be willing to remind J. to use sunscreen, and keep herself well in other ways, since I won’t be around much longer to guide her? (I’m speaking ironically since you must know by now that J. is 100% self guiding.) She’d never admit it, but I think J. will miss my nagging. Imagine the time I’d save if I gave up nagging before I die, accepting my defeat….

Then I was thinking that maybe not needing new clothes or haircuts will free up some time for me to nap as I need to. Is this nature’s way of easing me into this last phase of my life? Without these distractions, my taxes will surely become the perfect respite from my reality. Just kidding.

Now, if you’ll excuse me, I need to rip my contact lenses out. Then I’ll get started on my taxes. Maybe tomorrow?

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

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.

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.

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 tackle 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.