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.

 

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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.

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.

The dangers of following in Chicken Little’s footsteps

Newspaper heading: The sky is falling

Warning to all: if you ask me how I am, I will respond honestly. Expect an earful of my medical worries, and of the challenges of waiting for more information. Is Dr. Blood Lite’s recent concern valid? This question will not be answered until next Tuesday morning.

Considering what I was dealing with, I felt that I was holding it together at least somewhat. I wasn’t happy and, in fact, me and my little blue Sadness doll were likely spending an excessive amount of time together on the couch. I also had moments of panic because Chicken Little is my first cousin. After the initial shock passed, I felt I was coming to terms with the fact that my health may be in peril.

Then I got more bad news. Prior to the corkscrew procedure last week, the doctor sent me for blood work, which he reviewed with me before I left. In only a week, my red blood count had dropped significantly, to the point of my potentially needing a transfusion.

These ups and downs in various blood counts are not new. Sometimes the doctors know why and sometimes they don’t. In this case, with so much hanging over me, that little piece of potentially bad news threw me over the edge. I was a basket case for the following few days. A mess. Hopeless and terrified. Many tears were shed between naps.

My discombobulation is a reminder that despite my efforts to prepare myself for whatever may come, when I am truly threatened, all that preparation flies out the window. In this case, when I wasn’t overwhelmed during the day, I had dream after dream of hospitals and illness at night. There was no rest for the very weary.

What I managed to forget was that I don’t cope well emotionally when I’m feeling crummy physically. Because of the anemia, I’m exhausted and all I want to do is sleep. I am also likely dealing with the effects of withdrawal from the chemotherapy Dr. Blood Lite reduced two weeks ago. I recall vividly Dr. Blood telling me long ago that I should stay on it because the side effects of withdrawal are so adverse.

Somehow, Sunday morning at 2 a.m. when I chose insomnia over nightmares, I put one and one together: I realized my moving so quickly from feeling well to feeling sick was not helping my mood one bit. When I woke up Sunday morning, I didn’t have to drag myself out of bed. I made it to yoga, and even stayed awake through not one but two coffee dates later that day. My body did not demand a nap that day, and I felt better on all fronts. Today, despite a sleepless night, I feel even more like myself. Might my anemia be abating? I can only hope.

Sure, I’m still scared of what my little corkscrew procedure will reveal, and I’m expecting a sleepless night next Monday. Still, I can’t imagine feeling worse than I did last week when I could actually see the sky falling. Even if the sky does fall, I expect it will take some time to reach the ground.

Mastering the effective use of imagery in writing

Apple corer with three apples, one cored

How’s your week been? Mine’s been busy. Between blood draws and bone marrows, I’ve been run off my feet.

I’m sure you’re dying for a vivid description of the bone marrow procedure. I wish I could tell you that Ativan knocked out my memory for the experience, but, unfortunately, I took the pill a little late for that. I was barely wobbly through the procedure, but stoned for the two days following. Reminder to self: next time, take the pill early enough for it to take full effect.

The nurse helped me onto the hospital bed fully clothed, only to tell me I’d have to expose a wee bit of flesh. He suggested I half moon the doctor, and he was not referring to the advanced yoga pose. Thank goodness for my best underwear. Then the nurse moved my legs into the fetal position, lightly placing his hands on them so he could hold them down. Some patients feel the urge to kick the doctor once he starts working.

The procedure itself was almost a breeze, truly. Dr. Blood Lite froze my half moon first, and then got to work. The needle itself felt like dull pressure, with the odd brief pain thrown in. At no point did I feel like kicking anyone, so rather than hold me down, the nurse regaled me with stories of his new girlfriend and his world travels. His levity was the perfect antidote.

Through it all, the doctor was calm and efficient, informing me of what he was doing and frequently assessing how I was tolerating the procedure. He could not see my expression since he was facing my half-draped posterior, but he frequently looked to J. for feedback.

This whole experience made me wonder how a doctor as caring and gentle as mine can undertake a procedure that is going to hurt his patient. He has to gather that information somehow, but how does he tolerate knowing that he’s causing pain? I feel for him.

His discomfort shouldn’t have been my focus during that procedure, however. I am often so worried about others’ distress that I completely forget about how I’m feeling. Or maybe not, at least in this case. Despite my concern for my sensitive doctor, I clutched J.’s hand so fiercely that I could have injured her. When the doctor looked to J. for feedback, he may have mistaken her grimace for smiling.

In the end, after several unsuccessful attempts at tapping me like a maple tree, i.e., bone marrow aspiration, the doctor had to move to the corkscrew–or is it apple coring?–method, known as bone-marrow biopsy. Thus, he removed a small cylindrical sample of my marrow, bone and all, for assessment. No biggie. In a few weeks’ time, my inner core, my deepest darkest self, will be revealed to all.

I will admit that I miss that little piece of me. I barely felt it at the time, but the ache in my lower back is a reminder of my loss. Thankfully Tylenol is effective at eradicating the pain.

I’m glad it’s over. Now I must wait. Since J.’s tooth is now healing, I’m open to happy distractions to pass the time. Coffee, anyone? They say it prevents cancer.

 

This is what happens when J. goes to the doctor (or the dentist)

Yellow upper case: Can I have your attention please?

You must be eager for an update on my last post. First off, thus far Jelly remains an only pup. I’m not hopeful.

Also, I am pleased to report that J.’s condition has improved dramatically. She has reduced her pain medication substantially, is eating more, and even sucked down a few potato chips yesterday. These are all excellent signs. Keep your fingers crossed that her infection has finally been quashed.

This medical crisis was uncharacteristic for J., who rarely visits the doctor. She doesn’t even have any specialists! When she does make an appointment with one of the medical professionals we share (Dr. Family, Dr. Tooth), I know she is terribly ill.

Sometimes when J. sees these docs, instead of focussing on her concerns, they ask about me. “How is Annie?” they inquire timidly. J., who oddly enough is not at the appointment to talk about me, finds their queries annoying. “Hello! I’m the patient here!” screams her inside voice.

I was first to see Dr. Root, the go-to guy for dental crises, years ago when I had a dental emergency that landed me in hospital. He treated me upon my discharge, ably fixing what a colleague had botched.

Dr. Root and I got along famously from the outset. Since my injury was so dramatic, he remembers both me and J. well from that initial encounter. He managed my care so well that J. has sought him out in her subsequent times of need. Of course she landed back in his chair last week.

While J. was writhing in pain in Dr. Root’s office last week, he asked her, not unexpectedly, how I was doing. As they chatted, J. could feel his anger escalating at how I had been treated long ago and the danger his colleague had placed me in. Then he showed J. the PowerPoint presentation he has used in his teaching ever since, which includes two head shots of me at my worst. I look like a monster, one side of my face and neck completely black and blue. When J. told me about this exchange, I realized I’ve become a haunting celebrity to local dental students. Thankfully I am unrecognizable in those shots.

I didn’t meant to hijack J.’s emergency appointment; I wasn’t even there. Even when I’m not there, I am, it seems.

Focus on the positive, J. You should stop complaining about these queries about me since occasionally our sharing medical professionals works in your favour. For example, I know you have slyly asked Dr. Family to check my thyroid if I’ve been crankier than usual. What joy you must feel seeing Dr. Family respond with her knowing smile.

Enough about J. already; let’s get back to me. Shortly, I will head to the Cancer Centre. Once I am in a drug-induced loopy state, Dr. Blood Lite will complete a procedure on me akin to tapping a maple tree. With the help of my Ativan, I will not leap off the hospital bed and flee in a panic. Today is no big deal, I say, but I’d appreciate your praying for me two weeks hence when we will reconvene to review the results. I’d do the same for you.

Picture of tap running out of maple tree

Resolutions are made to be broken

How are those resolutions going? Are you eating better? Are you down a size yet? Have you thrown out your money on that new gym membership? Well, if you’re struggling maintaining your commitment to yourself, you’re not alone.

My resolution to stop catastrophizing about my health lasted a total of 8 days. Then I went to the cancer centre for my regularly scheduled check in. I arrived with my resolution in tow, fully expecting an uneventful visit. I hadn’t noticed any new or different symptoms. Sure I’ve been napping most days, I’ve had the odd bruise, and I don’t quite feel myself, but that’s nothing new.

I knew I was in trouble when the lovely Dr. Blood Lite entered the room with an unusually grim look on his face. He pulled his chair in close to mine and asked how I’d been feeling. Then he said, “I’m worried that….” I can’t tell you how that sentence ended because, frankly, I was stunned by his lead in. A opening like “I’m worried that” is pretty high on the list of sentiments no cancer patient wants to hear.

It turns out my blood counts are dropping and the doctor is not sure why. I’m tired because I’m increasingly anemic and I’m bruising because my platelets continue to drop. Since my leukemia is well controlled, these changes likely reflect my wild card, polycythemia. I’ve had polycythemia for 18 years now, and in that time no brilliant medical researcher has devised a way to stop its advancing. The symptoms are manageable but the polycythemia train keeps moving, and I can’t jump off.

There are other possible explanations for my changing blood counts but this one needs to be investigated. The doctor suggested I reduce the nonessential chemotherapy that addresses my polycythemia symptoms since this drug could be responsible for my declining counts. No problem. If, after 6 weeks, reducing the meds is not the answer, the doctor will have to inspect my bone marrow for clues.

A long time ago, I wrote about the little minions who might one day start squatting in my marrow, building homes in the spaces needed to produce healthy blood cells. I’ve never invited them, but I have no means of kicking them out. Landlord-tenant bylaws do not apply. The only way to know whether the minions are squatting is to take a closer look.

J. knew that waiting six weeks to search for the minions would torture me. She asked whether I might have the bone marrow aspiration sooner so at least I’d know what I was–and we were–dealing with. For me, not knowing is much worse than knowing, even if the news is grim.

And so, dear readers, I blew my resolution completely yesterday. The doctor’s appropriately asking me about my advanced care plan didn’t help. (More on that another day.) I will now reinstate my resolution forthwith, knowing that in some situations, follow through can be challenging despite our best intentions. Next week, I will have no trouble following through since an Ativan will help me visit La La Land during the procedure.

I will keep you posted. I always do. If I can deal with this, so can you. And don’t forget, inside every anxious person is a brave person itching to get out.

Weiner dog in cape flying through air

This psychologist’s theories of fostering close relationships

Quote: Strangers are just friends waiting to happen. Rod McKuen

You may have thought I was finished talking about last Thursday’s fiasco, but of course I’m not. I spent the weekend reviewing what happened and how I resolved the situation. I’ve decided that, except for driving into a parking lot knee deep in slush, I would not change anything else. This conclusion has nothing to do with getting home in time for my client, nor sparing myself the cost of a tow truck.

I relied on three people that day, two of whom I have an established relationship with, and a third who is a friendly acquaintance. All came through with flying colours. I told them what I needed and they graciously jumped at the chance to help. Shouldn’t that be the way the world works?

I frankly expected Drs. Basset to help me if they could. Our friendship is well established and built on give and take, as is any good relationship. When I first got sick, I realized how extensive our incredible community of support is.

I don’t know Ms. Good Neighbour nearly as well as Drs. Basset. She’s told me her name before but it took last Thursday’s encounter for me to commit it to memory. I’ve never seen her outside the park (that’s often the way with these relationships) but I know she lives in the neighbourhood. She happened to be there when I needed help, and I sensed that she would come through. I asked, and she graciously took 20 or so minutes out of her day to do what she could.

While Ms. Good Neighbour was accepting my thanks (I believe I only thanked her 7 or 8 times over that 20 minutes), she wisely said, likely to shut me up, “If I were in your situation, wouldn’t you do the same for me?” Of course I would, and I have when asked, and sometimes even without asking. Easing another person’s load makes me feel needed, useful, trusted, even happy.

You all know that I’m not the sort to rely on others; in fact, I abhor having to do so. Leukemia has been an excellent teacher here, rendering me without a choice some days. Leukemia had nothing to do with last week’s incident, however, unless the illness has unknowingly interfered with my problem solving. (That’s a distinct possibility.) Let’s say there was a carryover effect from the needy person leukemia has made me some days: I needed help on Thursday because I did something stupid, so I asked for it.

If someone is needy all the time, that person may burn out the people around her. Recall the energy vampire described in an earlier post. But I believe it is possible to be needy on occasion without breeding resentment and friendship fatigue. According to my newly developed theory of human relationships, Neediness + Reciprocity = True Friendship.

I haven’t been back to the park since that day–I’m a little car shy–but when I do, I’m hoping I’ll bump into Ms. Good Neighbour. Now that I know her name, this friendship may take off, especially once she tastes my baked goods.

Which leads to my second theory of human relationships: Appreciation x Unsolicited Baked Goods = Undying Devotion. You know it’s true.

New Year, Same Old Me

Typewriter with paper typed: New Year, Chapter One

Have you noticed I’ve been quiet on the blogging front? You know my motto: If I don’t have anything to say, I don’t say anything at all. I wanted to come up with a compelling post that would provide inspiration for the year ahead, but I drew a blank. I decided to wait until inspiration struck.

I can’t come up with a decent New Year’s resolution, despite asking everyone around me for their resolutions so I could steal their ideas. I envy people who say, “I don’t make resolutions.” Why do I get caught up in this absurdity every year?

In 2017, I had resolved to be happy with myself the way I was. You’d have to ask J. how successful I was at this goal; I’m not the best judge. Nonetheless, I intend to reinstate the self-acceptance resolution again this year. Let’s assume I am the best me I can be at this time, and that I’ll do what I can to maintain that me going forward. I’ll take care of my body, be kind to myself and others, and stop apologizing for my existence. The third one will be the most challenging for me.

But I can’t merely recycle old resolutions; I have to add something new, so here it is: I hereby resolve to jump off the health-catastrophizing bandwagon. No more making deadly mountains out of molehills. If my body is off, I’ll assume it will right itself rather than concluding my death is imminent. I’ll focus on living rather than dying. It’s only taken me 5 years (18 if we count all those other ugly health issues) to consider addressing this issue.

Rather than viewing bad news as deadly, I’ll consider it a blip. Blips pass. I anticipate setbacks, especially when one of my doctors expresses concern, but I can manage this. I’ve got all the tools in my psychologist’s toolbox; it’s time I apply them more consistently to my own life. My new mantra is, “Who, me? Worry?”

Plus, when my mind turns to the death monologue, I’ll remind myself of all that contradictory evidence. This past year, I’ve been healthier by all objective standards than I have been since my leukemia diagnosis in 2012. I’ve had no hospitalizations, no blood transfusions, and no major medical issues. Even the health challenges I’ve had have been manageable.

I’ve been remarkably stable for someone with leukemia and all that other ugly stuff. I am truly the picture of living well despite cancer. Sure, I brought a virus back from Israel, but it passed. At least the virus had the good sense not to interfere with my trip. I would have been angry if it had.

In the future, when I start thinking of my impending death, I’ll have to remind myself of how strong and healthy I’ve been. I am not going down without a fight. My body is in a good place to overcome whatever health challenges come its way. And if I fall off the anxiety-free horse, I trust you will be there to hoist me back up. Thanks for that.

Happy New Year. May you resolve to be happy in 2018. That’s all that really matters.