Unemployment

"You are fired" on sticky note on bulletin boardI was a little out of sorts last week. When I’m seeing clients, one of my jobs is to help them figure out what’s bothering them and what they need to do to feel better. I’m pretty good at helping other people do this, but I’m kind of clueless sometimes when it’s me. Not this time, though. I know exactly what’s bugging me.

My appointment book is empty (of client appointments, not doctors’ appointments, that is). A client fired me last week, and I don’t have any others scheduled right now. I should probably clarify: I told the client to fire me. She had made so many fantastic changes and was doing so well that I knew she could find better ways to spend her money. She agreed that she was ready to go it alone.

My ultimate goal as a psychologist is to be fired (assuming it’s not because the client despises me or thinks I’m a dud; those firings don’t feel so great). I want to see my clients thriving and know they’re on the right track. To remind them how insightful and resourceful they are. Yet, I don’t ever want my clients to feel stuck without my guidance. Clients are ultimately the expert on what’s going to make them feel better; I’m just there to help them sort that out.

And my launchings are flexible; the client knows the door is open if need be. I let clients know they’re welcome back at any time if they feel unsteady. And I’ll admit I enjoy it when they do return because I get to catch up on their lives again, and I appreciate knowing they view me as someone who may help.

Since I stopped work abruptly when I was diagnosed with leukemia, I’ve reopened my office cautiously, seeing only clients I’d seen before. Every so often a former client calls, comes in for a few sessions, and then says goodbye. But there are only so many old clients who call, and some are likely hesitant to do so given my vanishing act not so long ago.

I didn’t realize how important these few clients were to me until I didn’t have any more booked. I thrive on any clinical contact right now, and I’m sad thinking of not having any more. It reminds me of how lonely I used to feel following a breakup when I’d wonder whether I’d ever date again.

I guess I’ll have to sit with this feeling for a bit and figure out what I’m going to do about it, if anything. Am I ready to open up my office doors a bit wider, perhaps even take on a new client or two? Or should I allow myself a break for now and see how that feels?  Maybe I’ll have to discuss this with my therapist when I see her this week. That is, assuming she doesn’t fire me first. Unlike my client, I’m not sure I’m ready to go it alone quite yet.

My most youthful (and useful) organ

Heart with ECG line in background

Ah, to be young of heart!

Last week I had my annual physical. Between prescription renewals and other concerns that arise, my lovely family doctor rarely has the time to do routine maintenance with me. Last week we booked that time. She checked me out head to toe and we reviewed some test results. A few concerns arose, but I’m more focussed on the good news: my heart age is 39.That’s 11 years younger than my chronological age.  Now if my other organs would only hold out long enough, I could be around for a while.

I took those findings with a grain of salt, however. If I understood my doctor correctly, heart age is determined by two things: blood cholesterol levels and blood pressure. My blood pressure always runs low because I’m on medication to suppress it, in order to lessen the potential impact of my blood clot on my liver. So really, those drugs allowed me to cheat on this part of the test. In fact, while your normal may be 120/80, mine is often 80/40. In other words, I’m barely ticking. No wonder I move so slowly: my heart has to catch up with the rest of me.

As for my blood cholesterol levels, I could give myself all the credit: I eat a fairly healthy, mostly vegetarian diet. But I am far from a purist. I love to eat, and except for restricting my sodium intake, anything else goes. Okay, I rarely eat fried foods or cream sauces, but I do indulge in other ways. I am especially fond of sweets, and have never been known to turn down dessert. Nor dessert seconds, if they’re offered. Recent dietary findings on the ills of excessive sugar consumption have not quelled my intake one iota.

When I was initially diagnosed with polycythemia, I mistakenly did some internet research on the disorder. Of course, the majority of that research paralyzed me with fear, hence my decision not to use the internet to research medical issues EVER AGAIN. But the information was not all bad: one of the things I learned is that blood cholesterol runs low in people with polycythemia. Don’t ask me why, though; I don’t recall. If there was an explanation, I probably wouldn’t have understood.

But why diminish the positive findings? I’m just glad my heart is healthy. We can live easily without an appendix, I understand, or without a gall bladder–mine’s long gone–or, for some people, a spleen. We can even give a kidney to a stranger. I’m no medical doctor, but I imagine living without a heart would be a challenge. It was nice to hear that one of my organs is thriving. That and my brain, which appears to be largely intact despite last week’s fall.

Sure, there was some concerning news, which I’ll admit gets a little wearying, but I’ll spare you the details. My heart is glowing too bright with youthful pride for me to see that other stuff. I’ll just bask in the good news for now, okay?

It’s not easy being bald

Kermit overlooking desert canyon.

Kermit knows how it feels.

After my fall last week, I decided to check out the bruise on my head with my hand mirror. Because I lack spatial skills, all I could locate was a larger-than-I-had-realized bald spot.  Oh, darn. Men with no hair can look sharp but women, not so much.

I first realized I was losing my hair last November when I stepped out of the shower and caught my wet scalp in the mirror. I could see a heck of a lot of scalp. How I had not noticed before? J. had the good sense not to mention it. I thought my hair was growing back, but in recent weeks I’ve noticed a few more strays gracing my sink.

I should probably come clean about my complicated relationship with my hair: I’ve never much liked my mop. It’s mousy brown, very thin, and I’ve never had a lot of it. In Grade 7, when I realized that long, flat, thin hair was less appealing than shorter, flat, thin hair, I cut most of it off. I’m wholly unsuccessful at harnessing my natural wave to its fullest potential. If I nap or put on a toque, I’m sunk. Calgary’s dry weather certainly doesn’t help.

When my hair was at its thinnest, I even went so far as attending a Cancer School class on wigs. I had fantasies of long, thick blonde hair, or maybe I’d go red and curly, something dramatic and different so no one would recognize me. Thankfully, some hair has grown back so I’ve let that idea go for now.

I watched a beautiful too-young woman lose her hair recently during a much more invasive chemo than mine. As if having cancer when you’re young isn’t hard enough, let’s tell the world! I saw a picture of Kailani sporting her new wig, and my first thought was: she doesn’t need a wig!  (I’ll admit I’m a bit slow.) She looked fantastic and was beaming with pride. I finally understood the emotional toll of chemo hair loss.

Despite my lack of affection for my hair, I had an unexpectedly strong reaction to realizing I was losing some. For the first time, I realized I didn’t mind what I had so much. I figured the loss had something to do with my chemotherapy, which made me even sadder, since my chemo’s forever. The good thing about leukemia is that it’s invisible to others unless you tell them or they catch you hanging out at the Cancer Centre (a dead giveaway).  Sure I’m visibly pale, and I’ve talked ad nauseum about my pregnant-looking belly, but there are many possible explanations for those things.

I was oddly disappointed to learn my hair loss is probably unrelated to my chemo. In fact, many drugs list hair loss as a side effect, yet my bald spot is likely due to an underfunctioning thyroid. I’m just brimming with medical surprises! But for now I’ve let people assume my chemo explains the loss. Let me know if you think I should come clean.

My enduring legacy

When I realized my health challenges might limit how long I’m around, I started to review my life, wondering whether I would leave a legacy of any kind. Is there anything people will remember me for? I have no extraordinary talents, no unique accomplishments, no stunning physical attributes. I’m just your average gal. I can be funny occasionally, usually when I blurt out something completely inappropriate, and hopefully the occasional client has considered me a decent psychologist, but that’s about it. My grandmother, a concert pianist, thought I had the best ear of all my siblings, but I have certainly never fostered this potential. (I’m told I disliked one piano teacher so much I hid under the piano during lessons, but I must have repressed that traumatic memory.) Now all I do with that ear is cringe when others are off key. I just can’t watch those singing reality shows; it’s too painful, especially before the real weeding starts.

So imagine my excitement–okay, after the initial shock and panic–upon my CML diagnosis, when I learned I had earned entry into a very rare club. I had not just one but two genetic mutations, and there were only 8 documented cases like mine in the world. It made me wonder, why are genetic mutations only discovered for bad things?  Why don’t geneticists study mutations that make people gorgeous or talented or brilliant? I’d really like one of those instead of the two duds God gave me.

Picture of JAK-2 genetic mutation

My first special genetic mutation

Most polycythemia patients share my first genetic mutation (the JAK-2 mutation).  Polycythemia is a fairly rare disorder that some view as a precursor to cancer. (I didn’t sleep through the night for five months after a doctor casually told me that. Doctors should be more careful about what they say to anxious psychologists with poor coping skills.) Polycythemia is diagnosed more often in older Jewish chaps than younger Jewish lasses like me. But it’s not a common precursor to the cancer I have. Sometimes polycythemia patients end up with acute leukemia, but not my chronic form. So yes, CML is Genetic Mutation #2, a.k.a. The Philadelphia chromosome. I’ve never even been to Philadelphia!

Does this look anything like Philadelphia?

Does this look anything like Philadelphia?

I wonder if any of those 8 other cases–my siblings in blood disorders–have a blood clot like mine, one that compromises their liver. Maybe I am in fact one in 7+ billion. Wow, I’ve taken “special” to new heights. I must be a true medical enigma.

Maybe, just maybe, I have finally found my legacy. Is it narcissistic to hope that someone might one day write a paper about me, Case #9 with Compromised Liver? I long to be a case study. I want doctors to read about me with curiosity and be fascinated by how I have beaten the odds. Maybe this CML diagnosis will finally give me the recognition I have always longed for. We all have to make our mark somehow; maybe I can as Patient X (for Xtra Special) in some well-respected medical journal. Perhaps I should sell the rights to my medical history. New England Journal of Medicine, anyone?  

The kindness of strangers, friends, and dogs

Polar bear fell on ice despite "Watch for Ice" sign

I should have read the sign.

Yesterday did not start out very well. A mere block and a half into my morning dog walk, I slipped on ice, bonking first my tailbone and then my noggin, hard. Since my brain is one of my better-functioning organs, I’m trying to keep it intact. That was the low point, but immediately thereafter the kindness started, and it lasted the whole day. It was a reminder of how blessed J. and I are.

It took me a few minutes to get myself up from the fall, during which Jelly waited calmly by my side, licking my face. I sat up when I saw a car approaching through the alley. (Getting run over at that point would only add insult to injury.) The kind woman got out, checked on me, and offered to help me home. Shaken by the fall, I thanked her and stumbled home. I didn’t realize until the next block that I was bleeding. When I arrived home, I didn’t fight J.’s suggestion that we go to the hospital to get things checked out. I knew a concussion could potentially be more serious for me because of my propensity to bleed. J. contacted her boss who graciously told her to take her time.

The triage nurse at the emergency room brought me right in, reassuring me I should be there. (Blood on my neck may have legitimized my presence.) I was sent to the lower-risk end of the unit, where two nurses treated me with kindness and concern until I could see the doctor, who was caring and attentive, suggesting wryly that I not go out without a helmet in the future. Ultimately I was sent home with a clean bill of health but not before a CT scan of my head, as well as instructions to return to the ER if any concerning symptoms arose over the following week. I couldn’t have been treated with better care and respect.

On the home front, our incredible friends sprung into action, dropping their plans in order to bring Jelly over for a playdate with her bestie, Rosie. I understand from Jelly that friends and dog all were excellent hosts. Hopefully, Jelly did not spend too much time surfing their new couch.

When I got very sick 18 months ago, I went from being the helper to the helpee, a tough transition for me. (It still is, as I realize I should have accepted that kind stranger’s offer of help home rather than worrying about her arriving late for work.) But yesterday’s events reminded me that when J. or I need help, it is always there, and we are ever grateful.

Even though I am sick, please don’t forget there are ways I can still help you. I can run errands, shop for groceries–my produce-selecting skills are unequalled–bake or cook, provide lifts to doctors and mechanics, and provide emotional support. But as before, please don’t ask me to clean your house. Cleaning is definitely not my forte, as J. would concur.

Muddling through my blog

As I’m sure you’ve noticed, this blog is a work in progress. I’m learning as I go. I hoped my entries would be a comfort to others challenged by health issues, including cancer, and to provide insight into the daily experience of living with illness. I want every post to be engaging and funny and to resonate with readers, but I know that’s not realistic.

Soon after I released my last post, I regretted what I had written. The tone was too self-indulgent and even whiny, which is not the intent of this blog. I was almost tempted to delete the post altogether, but after stewing about it overnight, I decided not to. I need to accept that I’m going to blow it sometimes, at least in my own eyes.

I am quite an expert at blurting out things I later regret, and with this blog, I have a new forum in which to do that. Usually I just offend one person at a time, but I realize I have infinite potential to offend the masses now. Sometimes I marvel at the fact that I’m a psychologist since I’m so impulsive.

What was I thinking?

            What was I thinking?

To make things worse, I am the master of holding on to regret and remorse. In my head, I keep a list of people I owe an apology the next time I see them, and I regularly lose sleep over my buffoonery. “Why did I say that?” is too common an internal refrain.

I know how counterproductive it is to stew about things that have happened, things I can’t change, yet I persist. Over the years, I have often encouraged clients to forgive themselves for things they’ve said or done that they later regret.  What kind of hypocrite does that make me? No wonder I’m a failure at meditation and all that “living in the moment” crap.  Lest my sarcasm be misinterpreted, that “living in the moment” crap isn’t crap at all; it’s a great goal for all of us to aspire to. Come see me and I might even be able to help you focus more on the present, whether or not I can do it myself. I may not practice what I preach, but I certainly try. Getting sick has helped to some degree: why waste however long I have wallowing in remorse? There are so many better ways to pass the time, like eating chocolate.

So in honour of this goal, I have not changed one word from my last blog post. I may regret that I posted something I’m not especially proud of, and I certainly hope I haven’t bored or offended anyone. Nonetheless, what I’ve written will stay in cyberspace in perpetuity, a reminder of all those times I say something I later regret. Let its presence be a gesture of my genuine effort not to dwell in the past.

If you have any tips for stewing less, feel free to send them on. Sure, I might know them already, but we all need gentle reminders sometimes.

The Hematoma

I love yoga, the more the better. The retreat was fantastic. What could be better than devoting a weekend to something you love? Today I’m sore all over in a good way.

I was planning on attending a similar retreat 6 weeks earlier, but unfortunately I created The Bruise To End All Bruises (hereafter, The Hematoma) below my knee. I cried when I had to withdraw. Many yoga positions are challenging if you can’t put any weight on one knee. Child’s pose, anyone?

Woman in child's pose

                      Ouch!

I wish I had a dramatic story for you, perhaps a spectacular outdoor fall this Year of the Icy Sidewalks, but no: I fell at home trying to stop my dog from stealing my lunch off the counter. (A Basset may have short legs but her body is as long as your Labradoodle’s.) Unfortunately, said dog had just soaked the floor after a sloppy drink. And I’m a klutz, so I slipped and fell, hard.

No big deal for most people, but for me it is, for several reasons. I’m on blood thinners to prevent the ugly clot outside my liver from getting any bigger. Blood thinners make people more prone to bruising. Add to that a lack of platelets common among us CMLers. Platelets help us stop bleeding. Oh, and remember the klutz factor. No wonder I’m always covered in various shades of black and blue.

This bruise didn’t look like much at first, but over the following week or two it revealed its splendour. The worst part of bruising is knowing my initial pain is only going to get much worse before it gets better. Think of that tickle in your throat prior to the full-blown cold: you can anticipate feeling crappy soon. But by the time your cold is over a few days later, my bruise is still getting worse. Poor me.

A previous hematoma (dubbed The Uberhematoma) followed a botched dental procedure.  (Couldn’t you have botched someone else’s, dear dentist?) Once the U.H. grew so large that I could not swallow and breathing became difficult, I landed in Emergency. The specialist who looked inside me said, with reverence: “I wish I had a camera.” Had it ruptured, I would have been sunk. I remained in hospital, initially on 24-hour watch, for 6 days. As it healed, thanks to gravity, for days I looked like I had been strangled.

So in comparison, except for the pain and inconvenience, this knee bump was nothing. It was merely the size of a golf ball but so painful after a week that I sought relief from the doctor. Getting into bed, walking down stairs and, of course, yoga–anything requiring bending or putting pressure on my leg–were all very painful. And I get pretty cranky when anything interferes with my yoga. (Just ask J.) Now, almost three months later, the swelling is down and my knee is just (just?) black and blue.

My newfound fear of bruising rendered me a little cautious on the mat this weekend. Call me a wimp, but I was just not up to another Big H. so soon. I trust my yoga teachers understood.

A weekend reprieve

I’m writing you from a wonderful yoga retreat in the mountains. The weather is beautiful, the women lovely, and the yoga inspiring. The thoughtful instructors have even arranged for me to get low-sodium meals so I’ll have nothing to worry about.

I could say this is a break for me, but really it’s a reprieve for J. You see, I’m always home. The poor woman doesn’t get a break from me, and she deserves it since I’m high maintenance. I’d blame my medical issues but I know it’s a broader personality trait.

J. encouraged me to move my office to our basement in 2008. I’d be able to work less, and she guaranteed a better lease. There’s a separate entrance so even if J. were occasionally home during work hours, she’d still have privacy upstairs. My health was fairly stable back then, but I needed to slow my pace and knew it would be easier if clients came to me. So they did. They loved the new arrangement: I tried to create a welcoming space and parking was a breeze. I worried I’d be terribly isolated working alone, but the human contact with clients did the trick. I have had no regrets, and J. has been incredibly supportive.

So even before I stopped working, I was always home. Since my work has slowed to a snail’s pace, I am still home but without the distraction of clients. Reporting on my day often includes a rundown of my interaction with the grocery cashier or the friendly neighbourhood librarian. I imagine it feels something like a couple’s adjustment to staggered retirements. When I have the energy, I go out earlier in the day but I’m usually on the couch by late afternoon. By the time J. gets home, I crave details about her life in the real world, including a play-by-play of her workday. (I have to live vicariously.) She can count on time to herself on Sunday mornings when I attend my favourite yoga teacher’s class, or during occasional coffee jaunts with friends, but that’s about it.

Picture of dog curled up on couch

Nothing’s better than couch time.

When I go away without her, which happens rarely, J. loves having the place to herself. She becomes a hermit, shamelessly feasting on organic KD, potato chips, and other high-sodium foods. She watches Hockey Night in Canada all night, even if she doesn’t like the teams. She enjoys the quiet and the tidiness–I’ve often been likened to Pig Pen–and couch time with the dog. (GET OFF THE COUCH, PEANUT!)

But, bless her soul, J. always tells me she misses me and that she looks forward to my return. She describes her walk with the dog or the novel she’s reading, or she tells me that the high-sodium meals she had planned for herself weren’t nearly as good as she imagined they’d be. I would understand if she didn’t really miss me at all; she deserves the alone time.

Maybe I should go away more often so I’d have more interesting stories to share with J. when I got home. I imagine the rundown of my grocery store visit isn’t so inspiring sometimes.

Who cares if I still look pregnant?

Picture of normal and enlarged spleen

This enlarged spleen is puny compared to mine.

Disappointing news last week: I went to the hospital hoping for a five-minute five-lb weight loss and a miraculous reduction in the size of my pregnant-looking belly. No go. I thought my swelling was due to excess fluid (bum livers can do that), but no. The radiologist I saw suggested another possibility for my distension: my ginormous spleen.

Blood disorders enlarge spleens, and I’ve got two (blood disorders, that is, not spleens), so the darn thing should be huge. Liver problems and enlarged spleens also go together.  Yet more reasons someone my age may look pregnant when she (or he) is not.

My spleen has been getting larger year by year since my polycythemia diagnosis in 2000.  Most spleens are shy, retiring organs, tucked behind the lower ribs on the left side and hard to palpate except in really skinny people. Mine is three times normal size, bold and brazen, outgoing, maybe even exhibitionistic. Nothing like me. My special organ creeps all the way down to my belly button, creating an outie out of my innie, and can’t be missed by anyone looking for it. (Note to fitness instructors: do NOT tell me to draw my belly button toward my spine. I just can’t do it; there’s always something in the way.)

Many a physician-in-training has uttered “Wow!” upon palpation of my belly. A first-year medical student who has difficulty locating my really big spleen should be removed from the program. Symptoms of an enlarged spleen can include pressure in the abdomen–seems pretty obvious since there’s only so much space in there–and shortness of breath from that pressure. A feeling of fullness after a small meal is common, even a loss of appetite, although I’ve never experienced any of that.

I’ve asked my doctors whether they could remove the darn thing, but unfortunately that’s not an option. I’d consider it cosmetic surgery–anything to get back my innie–but I guess doctors view the situation as a little more complicated. People can live without a spleen but the liver has to jump in to do its job, and my liver is already taxed as it is. Would it be able to go from working half time to two full-time jobs? I don’t think it’s up to the challenge. So for now, I am resigned to my pregnancy. I will continue to avoid all contact sports, which isn’t a problem because I’m wholly unathletic and afraid of objects flying toward me.

So I guess I can’t rely on the usual quick fix for my belly this time. Oh well. But there’s an important silver lining here: my liver is functioning pretty well right now and I can reduce my diuretics, which help me to keep that fluid down. When my liver shut down a few years back, every few days I had to undergo this fluid-reduction intervention I was hoping for, so I’ve come a long way. Just don’t expect to see me in a bikini anytime soon. And, as before, please don’t ask when the baby is due. This baby is very happy where she is.

The pros and cons of being an excellent teaching case

Medical students around patient in hospital room.

I love being the centre of attention!

I must be a medical marvel. Sounds a little grandiose, I realize, but whenever I have been in hospital, I have proven myself to be an excellent teaching case. Large groups of medical students and residents and medical fellows flock to me because I am such an interesting specimen.

As a psychologist, I was once “the student” in a professional training program, so I appreciate the importance of teaching cases. If a student can learn from my complex medical condition, I am pleased to make myself available. I often feel that the care I receive when a student is involved is as good as or better than that I receive from the physician alone–no offence to my doctors, who are incredible caregivers–because a student cannot take the shortcuts that come with experience. Students’ assessments are often very, very thorough, followed by review of their findings with their mentor. Then both physician and student return to share their impressions and I benefit from everyone’s insights and expertise.

Psychology training focuses on developing relationships, for obvious reasons. Really, bedside manner is what psychologists do. If clients don’t take to me, I may not be the one to help them, and I understand their seeking someone else; I would do the same. So it makes sense that bedside manner is important to me and the first thing I notice in any doctor. There are only a few student physicians I have really had difficulty with: one who was not true to her word, and another who could not address me using my first name, as I had requested. I may be married but I am not “Mrs.”. (The title just doesn’t resonate with many lesbians, married or not.)

And sometimes, since I am prone to anxiety, the physician-in-training will say something that will make me worry. I have been told that my liver is cirrhotic—it is not—and that I am in kidney failure—when I have not been—and that I must have leukemia—long before I did.    (Okay, maybe that last one was on to something.) To be fair to these students, in my panic I disagree with their diagnoses defensively, so I can’t blame them for insisting they are right. I have learned to review these concerns with my core physicians, and am reassured when I do.

It’s nice being the centre of attention, but sometimes I wish I weren’t. What if I’m not feeling well or I’m just dozing off when the troops arrive? When I become impatient or frustrated with a student, I remind myself that I hope to live long enough for my current physicians to have children or take a sabbatical or even retire. Then their underlings will have to assume my care. I’d better do all I can to ready those docs-in-training for the next generation of sickies, whether I’m still around to be their patient or not. So I take a few deep breaths and do my best to hide any discontent. Sometimes I’m successful but sometimes, I’m sure, I’m not. My deepest apologies for those times. It’s just exhausting to be so popular sometimes.