Sure, I’ll do one thing every day that scares me, tomorrow.

Thanks to Eleanor Roosevelt for: “Do one thing every day that scares you.” I consider this sentiment my personal mantra. (Yogis: Please excuse my corruption of the term “mantra”.) As a fearful person by nature, I know I need to push myself through my hesitation. Sometimes I don’t even have time to recover from the last challenge before I’m faced with a new one. Cancer has been a crash course in confronting fear. Last week alone, I talked about my cancer journey with strangers in front of a camera, and I managed the bone marrow procedure (with the help of a pill). Then I feared what doctors would find for a week, only to learn there are more answers than questions in my malfunctioning body. The next night, because of circumstances only partly of my own doing, I arrived very late for a meeting I had committed to. I HATE showing up late.

Two cars on side of road in winter conditions, one  standing upright.

Okay, the roads weren’t quite this bad.

So yesterday, I decided to ditch my mantra. I skipped my beloved yoga class because the icy roads felt too daunting. As much as I love my favourite yoga teacher, I don’t feel all that relaxed by the end of class if I have to fight heavy morning traffic on a snowy day to get there. I am first to admit I totally copped out. And I spent the hour I would have been in yoga wishing I’d gone.

Skipping yoga is a big deal to me. I love yoga. It’s been a constant in my life since long before cancer. I’m inflexible and clumsy and every class is hard. I do what I can, which isn’t much some days, but I’m always glad I’ve gone.

Instead of driving to yoga, I walked to the dog park, where the sheer ice that had been building all week was barely covered by a skiff of fresh snow. I used all four limbs to make it up the first hill, and tread carefully the rest of the way to avert falls. So much for taking the day off fear. When I went for a drive later that morning, I realized I was at higher risk of injury at the dog park than I would have been on the roads.

I don’t have a choice but to tackle the many frightful challenges cancer throws my way. If I don’t deal with them head on, I’ll be letting the illness rule my life. Some days I face these challenges more successfully than others. But every so often I just need a break. I can’t skip having cancer, but there are other things I can say no to if I feel the need. Maybe not yoga, though, because yoga makes me happy.

So I’ll keep doing one thing every day that scares me, just not today. I’ve exceeded my fear quota in recent weeks, and I’ve decided I deserve a break. I’ll be hanging out at home until a special yoga workshop this evening. And my dear friend with snow tires is driving. I can’t wait.

Advertisements

Where oh where has my marrow fat gone?

This blog was supposed to be an anxiety-free zone, but I have been failing at this mandate recently. Here’s our lesson for the day: fearing the worst is a waste of time. The sky is not falling after all. My apologies to any followers who have been as worked up as I’ve been over the past few weeks.

Picture of prepared bone marrow appetizer.

This must be somebody else’s bones.

J. and I met with my fantastic cancer team this morning for results of my bone marrow examination. I learned, not for the first time, that I am a mystery, an anomaly, an enigma. The testing revealed that, although my bad CML cells are greatly diminished, my bone marrow is not in sync. Marrow for someone of my age should approximate a 50/50 ratio of blood/fat cells. Because I am oppositional by nature, I am sitting at 95/5. Yes, indeed, my marrow bones are low fat. They would not make a very tasty appetizer for a cannibal.

This means that too many blood cells–likely white blood cells since I have an abundance of them–are hanging out in my marrow, squeezing out the fat. Why might I have such an excess of white blood cells? Of course I, a lowly layperson, am perplexed, but so is my hematologist, and even the pathologist. This pathologist’s words (yes, we eavesdropped on the speakerphone conversation): “She’s a funny one.” It’s one thing to stump your esteemed specialist, but quite another to stump the one who’s supposed to tell the esteemed specialist what’s going on. I am surrounded by highly respected medical professionals who have no idea what is wrong with me. Frankly, I quite admire them for their honesty.

Layperson or not, I can explain what is going on: my marrow fat cells have migrated to my belly, where they have instigated a sit-in. This migration is serving two purposes that I can think of off the top of my simple head. First, these cells are providing a protective layer for my very delicate spleen. Whether or not I play touch football, my ginormous spleen is a precious specimen that needs buffering. And, second, these congregated cells are beckoning pregnant women and those with young babes to smile sweetly at my little belly, as if to say: “Maybe we’ll meet soon at Mommy and Me.” It’s all good.

Funny enough, my hematologist does not buy my interpretation; rather, she feels additional testing is warranted. Thankfully, she vetoed the pathologist’s suggestion of another look at my marrow. Instead, she sent me back to the lab for additional, more involved bloodwork, which will take about 6 weeks to come back. But since I gave up waiting last week, we’re not sitting around in the meantime. The doctor approved travel to locations free from potentially dangerous infections, so we’re booking a vacation. I’ll let you know where we’re going.

The art of not waiting

Last Tuesday, as you might recall, my doctor decided it was time to take a little look at my bone marrow. One needle and one Ativan later, I was told to return the following week for the results. And so my week of waiting began, for good news or bad news, who knows. My week of trying not to cross that bridge before I come to it. I was wondering, why is it always the bad bridge I try to cross rather than the good, hopeful, optimistic bridge?

I tried to tell myself that my doctor would not find anything of concern, that she’d have some solution to whatever she finds because she always does, that she wouldn’t send me off with cause for alarm. But it didn’t really work. Let’s just say, hypothetically of course, that I’ve been terrified of what my doctor might find. The bridges I was crossing led to nowhere good.

So I decided I’d better stop waiting, i.e., sitting around and stewing about the worst possible outcome. Even if the findings are bad, how would it help me to spend a week worrying? It wouldn’t. So I decided not to.

What would I do instead, though? Well, I had Christmas and Hannukah gifts to buy (the downside–and upside–of being in a bi-cultural relationship), I had healthy meals to cook, I had friends to visit, and I had a dog who, whatever my mood, still needed to be walked. I had yoga to attend and groceries to buy and a blog to write, and I seemed to have a curious amount of eating and not sleeping to do. I could even have cleaned the house if I ran out of activities! No point in waiting when I could be living.

This busy-ness strategy worked for a few days, but then I remembered that I have leukemia and I can’t keep a frenetic pace for long. And so I crashed. When J. offered to take on my usual morning dog walk yesterday, rather than fighting her, I consented readily. And then I had my first morning nap in months. I don’t like morning naps. They feel like giving in to the fatigue, or giving up. But I knew I’d struggle all day if I didn’t.

I’ve now decided I might have to shift my strategy if I’m going to get through the week without dying from overactivity-induced exhaustion. Rather than running myself into the ground, I’m going to focus on the faith I have in my beloved medical team. I’m not going to assume there’s something bad lurking in my bone marrow, just something unknown that may need to be addressed. And it will be. Knowing what’s going on will be better than not knowing, don’t you think?

J. says she’s actually looking forward to Tuesday because we’ll finally get some answers. I’m not quite there yet. J. is a master at not crossing bridges before she comes to them.

And it’s not like I’m going to have to cross that bridge on my own. There’s J. and Jelly and all of you. I am so grateful for all the support.

Line of people crossing bridge at dusk

Shame on you, Tom Cruise

I’ve spent a lot of time at the pharmacy over the past 14 years. I’ve dropped off prescriptions, asked questions in person and by phone (I know the number by heart), and picked up my medications. I consider the place my Cheers, where everyone knows my name. My favourite pharmacy technician–let’s call her Alicia–seems to be working whenever I need her. She always greets me with a huge smile, and she has a wonderful way with grumpy clients. (Never me, of course.)

But last week, for the first time, I felt embarrassed as I approached Alicia at the window. I had to ask her whether my Ativan was there. Yes, you heard me right: Ativan. Ativan is in a class of highly addictive drugs used to manage anxiety. Although I’ve used Ativan on only a few occasions during hospital stays, I’ve never received the drug as an outpatient because I’ve never felt I needed it.

When I learned I would be undergoing a bone marrow procedure a few weeks ago, I decided I might need a little pharmaceutical assistance. I wish I were able to just tough it out, as I usually do, but I decided to make my day easier by taking this pill. I’ve had my bone marrow assessed once before a few years ago, and I coped just fine. The procedure is not something to fear and it’s not overly painful; it’s just a bit uncomfortable at points.

I realized my fear was less about actual procedure than about what the doctors would find. I knew I’d cope better if I used medication to help me through. So I asked my hematologist for one and only one Ativan. Her instructions on the bottle were: “Take this pill prior to bone marrow procedure.” I like her succinctness.

When I went to the pharmacy to pick up my pill, dear Alicia was there. She handed over my pill with a smile. And I told her, although I needn’t have justified anything, that I was a bit embarrassed by this prescription. She smiled warmly in response and said: “You never need to be embarrassed.” Sometimes people say something because it’s the right thing to say. Well, Alicia said this because she meant it. I could tell. I’m an excellent judge of character.

So I say to you, dear readers, if ever you are on a medication that you are ashamed to be taking, for whatever reason, don’t be. Tom Cruise didn’t know what he was talking about when he went on his anti-antidepressant rant. You and your doctor have determined that you would benefit from whatever drug awaits you at the pharmacy. The pharmacist’s job is not to judge you. But first you need to stop judging yourself.

By the way, I’m glad I let myself take my pill. But I’m still a little hung over today, so I’m going to beg off ironing or signing legal documents. Speak to you tomorrow, okay?

Woman in lab coat (pharmacist) standing in front of pharmacy

Does this woman look judgemental?

Do I deserve to be a cancer poster child?

Sometimes I feel like a cancer fraud. No, I’ve never lied to you about having cancer; I do really have leukemia. My fraud relates to the cancer itself. Although I’ve had my ups and downs with illness, and some especially tough times with leukemia, I haven’t gone through the trials and tribulations that many of my cancer-surviving peers have. My chemo is fairly benign. I’ve spent only a few days rather than weeks or months without an immune system. I’ve needed some blood products but not all that often compared to my other Cancer Club peers. Sure, my energy isn’t great, but I can still walk my dog every morning, make healthy meals for our family, and even manage (barely) a challenging yoga class.

I have a cancer that has a fairly newly discovered simple treatment regimen. Each year, new drugs are being patented to destroy my type of leukemia cells, so if the drug I’m on stops working, other options may be out there. Not everyone is this lucky. I know this from people in my life who’ve had cancer, as well as the many volunteers I’ve met through the Calgary Cancer Project. Treatment is often much more invasive and disruptive, and many patients feel much sicker before they start feeling better.

I’m worried I’ve duped the magnificent Jessica Dollard, the Patient Centred Experience Advisor with this Project, into thinking I’m a prototypical cancer patient when I’m not. Still, she has chosen me, along with some other (in my view) worthier volunteers, as one of the faces of cancer in Calgary. She would like to bring some real-life stories of cancer survivors to those bidding on the new Cancer Centre. Our stories may be used to solicit funds for the new Cancer Centre as well. I love this idea. Potential bidders and donors should know who they’re building the facility for. Jess believes, rightly or wrongly, that I could be one of those people.

So yesterday, some people came to my house to take my picture and film a brief interview on my experience with cancer. There were photographers and a videographer, and cases and cases of lighting. I’m going to be a cancer star! But will everyone think that I’m a fraud?

Scratch that. How many times have I told my clients we can’t compare our experiences, and their impact on us, with those of others? I have leukemia and, easy cancer or not, it’s had a profound impact on my life and the life of my family. It’s made me a demanding, needy friend. It’s interfered with my working and what I do in my my leisure time, added financial stress, disrupted our retirement plan, and made life especially challenging for J., my primary support person.

So no more apologies. I deserve to be that poster child. Bring on the cameras! Now, what to wear, what to wear? But where’s the person to do my makeup and my hair? I’m a failure at all that stuff. Well, I guess if I am unadorned, I’ll be a more genuine face of cancer.

Picture of multicoloured stars within a star outline.

I deserve to be a star, don’t I?

Sure, I fear dying

You might think that someone with various and sundry health challenges, including cancer, might worry a lot about dying. The thought does cross my mind every so often, but not for the reasons you might expect. Surprisingly, I’m not all that worried about dying because my health gives out. I’ve survived so many serious health challenges that I feel somewhat invincible on that front, perhaps excessively so.

For example, this morning, J. and I headed up to the hospital to meet with Dr. Liver. Last week’s ER doc, upon noticing my liver enzymes were wonkier than usual, suggested I make this appointment. I wasn’t all that nervous about seeing Dr. Liver, even though my liver’s happiness is somewhat critical to my staying alive. I didn’t expect Dr. Liver to be all that worried–he’s not a very reactive fellow, and he’s seen my liver enzymes much higher–but you never know what might transpire.

Woman applying makeup in car while driving, both hands off wheel

It was much too easy to find this picture.

As we neared the hospital, we passed a well-dressed woman in a red Mercedes applying her eye make up while she was driving. We were on snow-covered roads in a 70-km-per-hour zone, no less. I’ve seen people do a lot of crazy things behind the wheel, but I’ve never seen anyone, male or female, apply eye makeup while the car is moving. Suddenly my liver functioning was farthest from my mind; I was terrified of dying in a car crash.

Yes, sometimes I feel like I’m taking my life in my hands when I get behind the wheel of my car. Whether the driver beside me is drunk or high, talking or texting on her phone, eating breakfast, reading a map, or applying eye make up, she so often is not focussing on the potential death trap she’s manoeuvring at high speeds through busy streets. And my awareness of what’s going on around me can only protect me so far. Wouldn’t it be the ultimate irony if, on my way to an appointment with a doctor who has kept me well for so many years, I was killed by a driver applying her eye make up while she drove 70 km per hour in winter road conditions?

So how does this story end? That impeccably mascaraed driver turned where we turned. Yes, Ms. Red Mercedes was driving to the hospital. Perhaps she too was a patient, wanting to look her finest for the doctor she was seeing, or maybe she was heading to her medical office to help patients like me. Good thing she didn’t kill any along the way. (Doctors don’t get paid for patients they don’t see.)

And my appointment with Dr. Liver? He said, as he always does, “Despite the numbers, from a liver perspective, you’re doing okay.” He’s a wait-and-see kind of guy, which I like. He won’t intervene until he has to. And if my doctor doesn’t panic, I don’t panic.

I can only hope I won’t get killed by a distracted driver en route to next week’s bone marrow aspiration. I’m not so keen on the procedure, but I’d still like to arrive alive. Trust me, I’ll be on the lookout for Ms. (or is that Dr.?) Mercedes.

When the elephant takes over the room

This past weekend, I bumped into a fellow I hadn’t seen in a long while. Let’s call him Adam, since it’s the first name that I (and God) came up with. Adam and I run in some similar circles, so I often know snippets about what’s going on in his life. I imagine he knows snippets about what’s happening in my life too, not to exaggerate my importance to him.

Our conversation started out just fine. I caught up on Adam’s work life, which I knew had undergone some changes since we last spoke. He seemed interested to tell me what was happening, and I appreciated his update.

As the focus shifted to me, Adam asked: “Keeping busy?” We can assume, given what we had just been discussing, that Adam was asking about my work life as well. I was a bit perplexed by Adam’s question, and I’m sure my expression betrayed me.

I should mention that although I had not seen Adam since I was diagnosed with leukemia, I was 99.9% sure he knew I was ill. (Remember, we run in similar circles and all. Word gets around.) I assume, rightly or wrongly, that when I bump into someone who knows I have leukemia, someone who hasn’t seen me since I was diagnosed, that that person might acknowledge my health challenges in some way. Is that a fair assumption? Probably not. Maybe I’m just hoping the person I’m talking to will bring it up, so I won’t have to do it myself.

There are so many ways I could have responded to Adam’s query. I could have told him I was indeed busy and left it at that–I was late for yoga after all–but that didn’t feel right. I could have told him that in fact I’ve been really busy lately with doctor’s appointments and medical tests and hospital visits and, in between all that, worrying about my health–in fact, cancer is running me off my feet lately–but I don’t think that’s what he was after.

Instead, I paused and said: “I have leukemia [stated as a question, as if I wasn’t sure he knew], so, no, I’m not working much at all lately.” The conversation died soon thereafter. Yes, I killed it. Or did he? I know he didn’t mean to with his innocent question. Most normal adults would have easily been able to answer him.

I don’t always talk about my elephant, but when I know she’s in the room, as she was with Adam, I find it hard to pretend she’s not. Sure, the conversation died, but I believe, in this case, I’d have felt worse if I’d ignored my reality altogether. Sometimes I have to acknowledge the cancer before I can move on to talk about anything else, even if cancer will bring the conversation to a standstill. But I’m risking the other person’s discomfort in the process. Is that fair?

Maybe I’d feel unsettled either way, come to think of it. I hate it when there’s not just one right answer. Or maybe there is, and I just don’t see it. Feel free to help me out here.

Elephant on therapist's couch

My recurring (chronic?) pregnancy

With all this recent health craziness going on these past several weeks, I’ve had a lot of medical hands on my belly. Eyes have widened when those hands have found my spleen, which has been especially prominent lately. In order to figure out what’s going on inside me, my doctor sent me for an abdominal ultrasound this week.

Ultrasound image of abdomen.

Any idea what this means?

Ultrasound technicians are somehow able to look at their screens and see many things that look to me like 50 shades of grey. They are also highly skilled at not telling the patient what they are seeing. I started the examination by asking what I considered an educated question, quickly followed by, “You’re not going to answer that, are you?” Her dry response, accompanied by a smile: “Good try.” With this, I knew we’d get along well.

But I broke this lovely woman down later in the exam when I pleaded with her to give me some explanation for my expanding girth. Not that I have much say in what she finds, but I provided the options of abdominal fluid or a growing spleen. I told her otherwise I’d just have to admit I was getting fat, and I wasn’t quite ready for that.

My timing could not have been better. Turns out the day before, someone had asked this lovely technician whether she was pregnant, and she is not pregnant, she assured me. I know not to ask any woman if she is pregnant until the precious newborn is cooing in her mother’s arms. (I didn’t really know that until J. taught me. Her social graces are light years ahead of mine.) Let’s clarify that this woman did not in any way look pregnant; she looked like a healthy, young athletic sort. She acknowledged that, out of protest, she had dipped into a few extra leftover Hallowe’en chocolates and was planning on skipping her aerobics class that day. Sounds like my kind of revenge. I imagine this insensitive query gave her some compassion for my current preggo-like predicament.

And so she let the cat out of the bag: my spleen was 23 cm long, 4 cm longer than at my last ultrasound 10 months ago. Since I’ve likened my huge belly to a never-ending pregnancy for a long time, my curiosity led me to the internet. Thanks to Google, within seconds I discovered that my spleen is about the size of a healthy almost-five-month-old fetus.

Of course, it’s still possible that I’m getting fat–I, too, have quickly diminishing leftover Hallowe’en candy in my house–but my ultrasound technician, in light of her own experience the day prior, was sensitive enough not to suggest that. She was instead fascinated by my spleen’s outsizing my liver, which she does not see very often.

Did the technician break the rules by sharing this information with me? Not really; she wasn’t telling me anything I didn’t already know in my gut. And she helped me make sense of how my body was feeling. In return, I was appropriately indignant over the insensitive question she’d been asked the day before. Least I could do.

It all started with a porcupine

There are many different ways that roles are established in a relationship. But early in my relationship with J., my dog’s first encounter with a porcupine defined ours. Yes, my beloved first born, Grover, greeted a porcupine at the park. Bad mistake. After the encounter, he looked something like this:

Dog with many porcupine quills in its muzzle.

J. and I couldn’t have reacted more differently. As soon as I saw him, I started crying, while Grover’s stepmother, J., leashed him, took him to the car, and drove to the vet, where I spent $400 on quill removal. From that point on, our roles were clear: I’d fall apart in a crisis while J. would be crisis manager.

Our roles remain to this day. When we go through a stressful time, J. is calm and collected and moves us through. I cry. Of course, I just cry so J. will feel competent and needed, as I’m sure she knows.

So let’s say this past week one of us has needed to cope. My leg is swollen for reasons unknown, and my blood counts are perplexing even to my all-knowing doctors. When I saw Dr. Blood yesterday, she decided she’d need to assess my bone marrow. No biggie, I whimpered. I’ve had it done before, just a little needle poke to answer some nagging questions. It’ll be a breeze, don’t you think?

I’ve been a teeny bit stressed by this recent upheaval while J. has been her usual calm self. How does she do it? She manages to support me through my medical ups and downs while having to manage her own life and her feelings and reactions at the same time. Does she even have time to focus on herself? Not much. Something great happened to her at work on Monday, and I was so consumed with myself that she didn’t even mention it until Tuesday. I feel crummy about that.

I feel bad about a lot of things with J., and I’ve often told her I regret what I’ve saddled her with. Our life with cancer was not her choice. And, thinking back to that porcupine, I was needy enough before cancer. Imagine me now! So in a brief texting exchange this morning–God forbid J. should have 8 workday hours off Annie duty–I apologized for the hard week. And she responded: “If you’d just stop having cancer.” Touché, J. And she’s right: I didn’t make myself utterly irresistible to her knowing I’d get cancer. And I didn’t choose this cancer thing any more than she did.

I try to imagine what being a caregiver is like because I so rarely am now. Sure, I may be supportive with clients or with friends, and as much as I can with J., but on a day-to-day basis, more often than not, J. is supporting me. I’d hope that were she the sickie, I’d step up to the plate. Believe it or not, when I was on my own, I was fairly good in a crisis. Were Grover still here, he’d vouch for me.

A guide to dressing for the ER

I seem to need to check in at the ER on a fairly regular basis. Yesterday, I woke up with what had felt like a bruise the day before but became a painfully swollen thigh overnight. Because I am recently and anxiously off my bloodthinners, I needed a doctor to tell me my symptoms were not those of a blood clot. So off to the hospital we traipsed.

I’m first to admit I’m a bit overwhelmed when I’m headed to the hospital. I’ve learned to dress in comfortable clothes that I can easily whisk on or off as needed. I sorted out the yoga pants that would accommodate the swollen leg, the t-shirt, and the hoodie fairly easily. I didn’t think much about the undergarments (they were clean), although I know some people do. But I was very negligent in picking socks. I was wearing my runners so I randomly chose short old sport socks.

Feet of person wearing dirty sport socks.

Are these lesbo socks?

I should probably explain that, although I generally take considerable pride in my appearance, my sports sock collection is old. Savers of the earth that we are, we don’t wash with bleach, and so my formerly white socks are, indeed, formerly white. Add to this the shedding dog and let’s just say these socks, although very clean, looked filthy. In fact, J. was utterly mortified when I removed my shoes to hop up on the bed. If I recall correctly, her words were: “How could you wear lesbian socks?” I can’t tell you what a lesbian sock is, however; you’ll have to ask J. for the definition.

To be fair, I was a bit mortified by my socks as well. Since the doctor had not yet come in, I begged J. to switch socks with me. (The ability to share clothes is one of many benefits of a same-sex relationship.) Ever the devoted and self-sacrificing partner that she is, J. did indeed agree to switch socks with me. She then proceeded to keep her lesbo-socked feet well hidden under the bed for the rest of our stay.

We remained at the hospital for many hours and left with more questions than answers, thanks to a kind, caring ER doc who concluded: “You are complex.” Because I was not in any immediate danger, this doctor eventually sent me home to follow up with Dr. Blood and Dr. Liver. I’ll admit I shed a few tears out of fear of what this swelling, and some new abnormal blood tests, might indicate. And, because of my vanity, I worried I might now have to deal with a third-trimester leg in addition to my pregnant-looking belly. I see Dr. Blood on Tuesday and hope to have more answers by the end of the week.

Very dirty sport socks

Lesbo socks, for sure.

When I’m scared, I often distract myself by finding something to laugh about. Yesterday it was socks, the previous ER visit, the fellow who chose to groom his toenails in the waiting room. (I am not making this up.)

Laughing about my lesbo socks helped me through an otherwise gruelling and stressful day. If I can’t find the humour myself, I can trust J. to find us both something to chuckle over. I don’t know what I’d do without her (and her socks).