Lest she forget

Where oh where has my appetite gone? Who cares? I’m on the easiest diet ever, one that doesn’t involve any planning or effort. Let me revel in it while I can. Don’t be jealous; losing an interest in food isn’t much fun. I don’t recommend it. I’m headed out for lunch today with friends and wondering what I’ll not eat.

Today I can assure you that my appetite loss is not a sign that my health is in peril. Yesterday Dr. Blood confirmed that my blood test results were a-okay. I’m fine.

Enough about that; we had many other more important things than my health to discuss. Dr. Blood is leaving for her overseas adventure at the end of July, so this was my last appointment with her, for now.

I’m going to miss her. We discussed the young hematologist assuming her practice in her absence–I’ll need yet another new name, folks–whom she’s no doubt chosen very carefully. Dr. Blood would not leave her patients with someone she did not trust. She assured us that she’d be back, and I believe her. She told us she rented out her home here for a year; she didn’t sell it. That’s a good sign, isn’t it?

I promised myself I wouldn’t cry and I didn’t, or at least not once I’d arrived at the Cancer Centre. (The drive there is another story.) J. and I asked Dr. Blood about her plans because we’re genuinely interested and we wished her well because that was the appropriate thing to do. I did not plead with her to stay, not even for a nanosecond.

Then I gave her the thank you card I should have written years ago telling her how grateful I’ve been for her diligent care. I reminded her of when we first met and how she saved my life. It’s a great story, and one she should never forget.

I’m an awkward hugger at best, but I was planning to ask if I might hug her at the end of the appointment. She preempted my awkwardness altogether. As we were parting, she asked if she could give me a hug. It was a significant gesture from someone who has been such an important part of my life for the past five years.

Changing of the guards

Just imagine these are doctors.

I am genuinely excited for her, and I hope she has a wonderful year. At the same time, I feel sad that she will not be here to care for me. Am I a bad person for thinking of myself and my needs in this situation? No, I don’t think so. Still, I’m glad I refrained from bringing Sadness into the room. I will miss Dr. Blood, but I will welcome her replacement and put my trust in him. I’ll adapt to someone new because I’ve been through the changing-of-the-doctors drill many times now.

Dr. Blood has also left me with a new goal to strive for. (We cancerous folks like setting goals for our futures.) The new goal? I now have to stay alive until she gets back. Dr. Blood seems convinced that I will still be here, and since her judgement has been 100% thus far, why start doubting her now?

Introducing the incredible shrinking woman!

Shot from the movie The incredible shrinking woman, tiny actress on big armchair

Thanks to all of my witty and creative readers who forwarded inspired names for my new doctor-to-be. (Take a look at last post’s comments if you haven’t already. I guarantee you will laugh out loud.) I may call a vote to decide the winner. Don’t worry, contributors, you’ll be able to vote anonymously for your own brilliant submission.

Today we have something even more remarkable to discuss, if that is possible, since I try to intrigue and delight with every post.

My weight has always been the bane of my existence. I insist I’m large boned, but that excuse will only go so far. I have likened myself to a pufferfish, and have spoken of my 75th trimester pregnancy (“trimester” may not be the appropriate word here). I generally watch my weight, but do not do anything about it, i.e., I am not a dieter. I may try to modify my eating if I fall off my Great Sugar Revolution wagon, for example, but I do not deprive myself of anything. Deprivation leads to bingeing, folks, remember?

For the past few years, my weight has been largely unchanged. I am overweight, but not excessively so.

But no more. My appetite has been MIA for two weeks now. I ate very little breakfast this morning, and now, at 1:20 p.m., I must have missed the lunch bell. I’m making myself consume small portions to keep myself going–I’d hate for my large bones to start protruding–but I have not experienced a hunger pang in some time. This is odd. My large pants are loose, and I even look a little less pregnant (which can happen if you’re not pregnant). I have re-entered the healthy-weight range for the first time in two years.

Normally I love food and I love eating, so why are the pounds are falling off me? I am not intentionally restricting my intake. I can assure you I don’t have an eating disorder. I’d eat if I felt like it. I don’t feel like it.

Of course this change of events could mean that my health is amiss, but there’s no sign of that. I feel absolutely fine, although I’m not sure how I’m functioning on so little food. Rather, I’m wondering if my latest combination of medications is to blame.

Many of my medications list loss of appetite as a possible side effect, but I never have the pleasure of experiencing that. I gravitate toward the tired side effect instead. Whatever combination of pharmaceuticals I’m consuming, I’m always famished. In fact, when I was speaking to Dr. Family the other day about my many medications, I told her I was hoping for the possible nausea from one, since I’d like to lose a few lbs. She looked at me quizzically, and then, despite herself, she laughed.

Perhaps the answer to this mystery is in my blood work, which Dr. Blood will review with me tomorrow. Whatever the reason for my incredible vanishing appetite, I’m hoping to extend my disinterest in food for a few more weeks. By then I should fit into my favourite jeans again.

 

Remission by any other name….

Did you notice I popped the R word into the last blog post? Perhaps it would have been more accurate for me to write “complete molecular response”. What is this, you ask (or maybe you don’t, but since I think it’s kind of interesting I’m going to tell you anyway)?

As I explain, please understand as I dumb this math down for myself. Math isn’t my strong point. Did I ever tell you my high-school math teacher, after tutoring me for months, suggested I drop the course before the exam to spare me an F on my graduating report card? Thank you, Mr. Fox.

The very smart hematologist who suspected I had CML took a bone-marrow biopsy, both to confirm her diagnosis, to stage the illness, and to get a baseline count of how many mutated cells I had. She determined, from this information, that I was in the chronic phase of the disorder, which is the first of three stages. Forget the F in math; thanks to this doctor, I received an A in CML. Now, every three to six months, I undergo genetic testing of my blood (commonly known as a PCR in CML circles) to determine how many cells with my special Philadelphia chromosome are coursing through my blood.

Within 12 months of treatment, I had attained a 4-log reduction (apologies to any mathematicians if I’ve written this incorrectly) in these cells, which means I had 1/10,000 of the leukemia cells I’d had upon diagnosis. Most CML patients who are diligent about taking their special Philadelphia-busting medications fall within this range or even lower within the first year of treatment. I am nothing if not diligent. I imagine you would be too if a doctor told you that carelessness could result in your leukemia progressing and potentially killing you.

So here’s the $128,000 question (inflation and all): If CML patients are in remission, a.k.a., at the stage of major molecular response, what would happen if we stopped taking the medication we were initially told we’d have to remain on for the rest of our lives? Sounds like an interesting research question, doesn’t it?

Normally I’m first in line to try something new. Hot new restaurant in town? I may not eat there, but I’ll know all about it. Hot new clothing store? I’ll tell you where it is. Hot new park in town? Let’s check it out, Jelly.

How about a hot new study for CML patients who want to rid themselves of the nasty side effects of their medications and are willing to stop taking the drugs altogether just to see what happens? No thanks. I’ll pass.

I’ve been a guinea pig for physicians in training over the last 17 years now. I can’t tell you (and not simply because I’m terrible at math) how many hands have palpated my ginormous spleen. That being said, I’m perfectly happy with my major molecular response, thanks; some other brave CML patients can step up to this plate and ditch their drugs in my stead. Once you docs are sure my leukemia won’t return or even progress to a more dangerous stage without my medication, maybe then I’ll consider going drug free. Good luck finding subjects!

Guinea pig

This is the old me.

 

Ah, ha, ha, ha, stayin’ alive

 

Did you miss National Cancer Survivors Day yesterday? Not to worry, so did I. I scored nary an invite to any of the festivities. I’m not even sure I am a cancer survivor; all I know is that my cancer hasn’t killed me yet.

Turns out I’ve got a good cancer, if there is such a thing, one that people can live with for many years. And since most of the time I’m in complete denial about my co-existing conditions (my impaired liver and my polycythemia–Happy 17th Polycythemaversary, by the way), I can pretend I too will be one of these people who will live a long life.

One of the main reasons I don’t feel like a true survivor is that I still take daily medications to keep my leukemia at bay. Oh, and my regular visits to the Cancer Centre. There’s nothing like hanging out amongst my cancerous peers to remind me I’ve still got the big C.

Unlike many other cancerous folk, I have very few leukemia cells now, according to most recent testing. So few that, in a CML patient booklet I just read, I am considered in remission. No one has used the R word with me before; in fact, when I was first diagnosed, I was told people with CML don’t go into remission. I was as surprised as you may be. If I’ve misled you, I did it unintentionally.

I also learned from that informative booklet that, with the advances in treatment of CML, many of us are living to a ripe old age. The focus of intervention has shifted from treatment to our quality of life. That part I get, now that I have reached Day 7 of The Wrath of the Gouty Finger. The leukemia isn’t so bad; it’s the symptoms and medication side effects that I find challenging.

So I’d like to suggest a new day of celebration more appropriate to those of us with CML. Let’s call it National Cancer-Symptoms Survivors Day. We’d be celebrating maintaining our quality of life while living with the threat of a potentially terminal illness hanging over our heads. We gatherers could compare notes on our various medication side effects and how we have survived them. We could share information about the interventions we’ve added on to manage those side effects.

I can think of many ways such a get together could benefit me. I’m sure there’s a CML survivor out there who would know how to manage yoga postures that require my lying on my belly. “Do you also have to rearrange the position of your football-sized spleen when you lie down?” I’d ask. Or how about our unrelenting fatigue? “Do you too fall asleep during matinees? How do you keep yourself from snoring?” Then there are the challenges of taking all those drugs. “How do you manage to time your medications to minimize all drug and food interactions?” The possibilities are endless!

We’ll plan our special day to coincide with the National Cancer Survivors Day. Then those of us who feel left out will have somewhere to go where we feel a sense of belonging. We all need to feel we belong somewhere.

Cut out figures holding hands

Things I should know by now, but sometimes forget

Handicapped door button

I’ve been going to have my blood taken on a regular basis for 17 years now. After all that practice, you’d think I’d know all there was to know about the process. This is what I know to do following the procedure:

  1. Put pressure on spot where the needle left a wee hole for at least a few minutes to promote clotting and minimize bruising.
  2. Anything that interferes with clotting makes this pressure all the more critical. Consider factors such as being on blood thinners (that was me once) or being low in platelets (that is me now).
  3. Any heavy lifting soon after the procedure, like holding the absurdly heavy lab door open for the person behind me as I exit, is contraindicated because it could interfere with clotting.
  4. Wearing a white shirt to the procedure is just plain dumb in light of my propensity to bleed.
  5. If any of these procedures aren’t followed, I may end up with blood stains on my clothing and/or a bruise.

Can you tell where this story is headed? Do I still get to tell you what happened this morning when I went to the lab to have my blood taken? It started off well. The needle prick was painless. I placed pressure on my wound following the needle withdrawal and, upon inspection prior to bandaging the spot, I appeared to be clotting well. Then I got up, put my jacket back on, walked through the waiting room, and pushed the heavy outside door open with the same arm that had just been taped up, first allowing the woman behind me through.

As I got outside, I felt a strange wetness on the same arm of my blood draw. “What might that be?” I thought curiously. “Why is my arm feeling increasingly drenched as I walk toward the car?” No lightbulb yet.

I’m sure you know exactly why my arm was wet. I too should have known, but it was fairly early in the morning and all my cylinders were not yet firing. I stood by my car, the unexplained wetness spreading down my arm, at which point the blood made its way beyond my jacket to my exposed hand. I have felt this wetness many times before, yet the physical sensation was not enough to jog my memory; I needed visual proof before accepting that I’d need to do a load of wash that day (or two, because I was wearing a white t-shirt).

With my evidence firmly in hand, I returned to the lab, using the handicapped button to open those heavy doors. I marched straight to the desk to seek help from the phlebotomist. My bloody hand proved sufficient evidence for her rally her troops to clean me up forthwith before I spread my gift of life all over the lab.

Oh well. What’s another load of laundry? Easy for me to say since J. does the laundry. She worries I’ll fall down the basement stairs. The ways I can be a danger to myself are infinite. Oh, and I bruise easily. Let me show you my arm….

The dangers of dependence: a tale of two doctors

A tree that is unbending is easily broken

Did I happen to mention that my beloved Dr. Family will be heading off on maternity leave in August? The gall of that fantastic physician to place her family ahead of her patients, placing her family ahead of her patients. I was diagnosed with leukemia during her first maternity leave. Who knows what will happen this time she leaves?

I don’t talk about Dr. Family much because she is, in some ways, a peripheral member of my care team. By necessity, I spend more time with my specialists than with her. She has always diligently reviewed my file before I do visit, though. She is an astute diagnostician and has cared for me well over the years I have known her. She has arranged for excellent coverage during her two prior leaves.

Her upcoming departure for baby #3 happens to coincide with Dr. Blood’s leaving for her year-long sabbatical. That’s a lot of change at one time for a change-averse gal like me. Thus I considered becoming completely overwhelmed when I first saw Dr. Family’s baby bump, but I’d recently reached my fretting threshold over Dr. Blood.

That’s how I decided to approach to Dr. Family’s leave differently. I recalled my shutting my practice temporarily–unlike me, my clients had no opportunity to ready themselves for my departure–and how, unsurprisingly, my clients survived without me. I’d expect no less of them.

As a clinician, I am always walking a tightrope between assuring my clients they can rely on me when they are distressed and encouraging them not to become overly reliant on my support. From the outset, we discuss those supports available to clients outside the occasional hour that we meet. I’d never want a client to think he needed to talk to me and only me in a crisis because that would set him up to be overly dependent on my care.

I’ve always known I’m not the only psychologist in town. Other highly competent clinicians jumped in when I got sick because they had to. I redirected clients that asked; others muddled through in their own way. Some clients may have ditched therapy altogether to see how they’d do without a therapist’s support. I trust they managed well.

Those who transferred to someone new may have had to share their story from the beginning, which is certainly harder than returning to someone who knows them. Nonetheless, unexpected change like this can be good for clients. I may have missed something or focussed excessively on one domain when they could have used a different kind of support. I realize my former clients may have found a therapist who was better suited to care for them. Sometimes a client reaches an endpoint with a psychologist and a new perspective is beneficial.

If my clients can survive or even thrive without me, maybe I can do the same with my new physicians. I’d hate to become a needy patient, and I trust both my physicians will find solid interim replacements. Who knows? Maybe the change will give my flexibility muscle a good workout. I may even learn that there’s more than one doctor in the world who can keep me alive. That would be reassuring.

Increasing my blog’s readership, one visitor at a time

It was a record week with two real live clients. For whatever reason, my second client found the session helpful and decided to rebook. At this rate, I may actually have a bit of income to declare at year end. Do you think her rebooking had anything to do with the despairing look on my face as the session neared its end? Or my begging? I thought so too.

I commended this client for making contact since we hadn’t seen each other for some time. I can’t imagine calling my therapist not knowing if she’d died since we’d last met. Kudos to her for taking the risk. I believe she could see, once she arrived, that my death is not imminent, or at least doesn’t seem to be so.

On a much triter note, I’d love my writing to find a larger audience. All writers would, wouldn’t they? Sometimes my narcissistic side wonders why my blog hasn’t garnered more attention over time. Is it my abrasively opinionated stance? My biting humour? How about my many random syntax errors? You’re probably wondering whether I’ll ever learn to stop my participles from dangling.

Despite my ongoing efforts to keep you entertained–“Enough already,” you say, “I wouldn’t have committed to this blog if I knew we’d be forging a long-term relationship”–I haven’t yet garnered any publishing contracts, I’ve had no requests for guest articles in esteemed newspapers, no talk-show appearances, not even any invitations to relocate to L.A. Perhaps my fame will follow my death, just like that of Bach or van Gogh.

It would probably help if I used social media to broaden my reading audience, but, because I don’t live with a teenager, I’m at a loss. I’ve taken a more primitive approach to expanding readership instead: I awkwardly tell people about the blog and ask them to take a look.

Sadness doll

Can you see the resemblance?

Take, for example, Mr. Platelet at the Calgary Blood Services clinic, the regular platelet donor who likened me to Little Miss Sunshine a few weeks back rather than my soulmate, Sadness, from Inside Out. You know Sadness, who’s forever trying to bring Joy down. (As a side note, notwithstanding the pale blue facial tone, I bear a striking resemblance to Sadness, even when I’m happy. The higher-than-average BMI, the frumpy sweater, the glasses, and the eyes that are always wide open. Hey, maybe that’s why Sadness is always sad. She’s tired all the time!)

I caught up with Mr. Platelet–would “Little Mr. Sunshine” be a better moniker?–this past Monday when I was volunteering and, while he was quietly eating his soup, I told him how touched I was by his kind words last time he was in. And then I clumsily directed him to the recent blog post where he’d played a starring role. In yet another act of kindness, he gamely read the post while consuming his soup. And just like that, I increased my readership that day. Poor fellow probably didn’t know what hit him. Even my clients would say I’ve never been known for my delicate touch.

No wonder my blog readership is increasing at a snail’s pace. Should I reconsider the social media approach? It’s less intrusive. Now I just need a teenager….

Social media icons (twitter, Pinterest, youtube

If you don’t have anything nice to say, don’t say anything at all.

Young girl holding lips closed, as if zipping lips

I am returning to the fold after the longest hiatus I’ve taken since initiating the blog. I’ll skip asking whether you missed me because I don’t want to know. I missed writing, but I didn’t have anything to say, so I didn’t say anything at all. I look back on all my grasping-at-straws posts with shame.

We are now back from vacation. Let’s say the trip was not Facebook worthy, even though I lack a Facebook account. I had no beautiful pictures or inspiring moments to share, and, failing those, no great insights or lessons learned. I was too busy trying to keep dry and warm amidst the torrential rain, the pounding sleet, and the gale-force winds.

We travelled into a disaster zone, a bracingly cold and unpleasant spring in la belle province. While we wandered the streets of Old Town, fearing that our umbrella would do a Mary Poppins at any moment, flooding displaced two thousand residents from their homes. There’s something discordant about enjoying the splendours of the area knowing so many people were being profoundly affected.

Maybe that wasn’t it at all. Maybe it was not having Grover, who stars in so many of my vacation pictures, with me. But he would have been so scared by the wind and the rain and the sleet and the snow (yes, there was snow, in May), and he doesn’t own a raincoat to protect his blue fur from the elements. It’s best I left him at home.

We needn’t factor in the exhaustion of trying to think and speak in French. Let’s just say that, beyond understanding French menus, food labels, and public signs, I failed abysmally at speaking and oral understanding. I am in awe of people relocating from foreign lands who master our language.

No, my silence was mostly due to utter exhaustion, I’m afraid. Usually, the excitement of exploring a new place keeps me awake and alert. (That, and the hyperstimulating morning coffee.) When I go away, I leave fatigue, and leukemia, and all those worries I usually carry around with me, at home and pretend I’m healthy for the duration. I crash once I return home. But this time, for whatever reason, fatigue insisted on joining us.

Baby screaming (shot of head only)In fact, I was so exhausted that, to stop my falling asleep on the way to the airport, we moved up our return flight by a few hours. A nap on the plane, and I’d be fine, I figured. I was all ready, earplugs in hand, and then the screaming started. No, not mine, that of the baby one row back. She started wailing before take off and kept it up past landing, with only a few short breaks. I kept telling myself, “I’m sure I was that child” so as to keep myself calm. By flight’s end, my exhaustion gave way to giddiness, which, thankfully, the harried mother could not hear over her screeching daughter.

And so, dear readers, now that that baby and I have parted ways, I am catching up on my sleep. I will be back to regular posting soon. Stay tuned for a “Believe It or Not” story about my day with my pharmacist. It’s truly ah (awe? ugh?) inspiring.

Fatigue is a many-splendoured thing

I’ve been struggling with more fatigue than usual of late. I should be napping daily, and on the days that I don’t, despite my best efforts, I spend part of the day in a fog. Last Monday, I napped before my volunteer shift so I’d be able to serve soup safely.

Despite my fatigue, I dragged myself out of bed this morning so I could write this post. If I let myself, I could return to bed and sleep for another few hours. My self-denial does not allow for the stimulating effects of caffeine. I am hoping writing will get my brain cells firing.

I try not to belabour you with stories of my fatigue day in and day out. I’d hate for your reading to put you to sleep. And I don’t want you to view me as a whiner. But since people often ask me why I’m tired, I thought I might list the known reasons here.

  1. Medical factors:
    1. Leukemia (I expect you to know that one)
    2. Polycythemia (maybe less obvious)
    3. Liver disease (yes, my sick liver makes me tired)
    4. Related to C, pharmaceutically-induced low blood pressure
    5. Several other medications with those little warning stickers on the bottle, “Do not operate heavy machinery….”
  2. Environmental factors:
    1. Bedroom is too hot/too cold/not just right
    2. Pesky songbirds that awaken early in these parts
    3. Pesky dog who takes her cues from the pesky songbirds
    4. Stanley Cup playoffs

Let’s focus on 2D, since the playoffs, however transitory, are currently compounding the chronic fatigue caused by medical factors (1A through 1E). Now that Calgary is out, I am rooting for the Edmonton Oilers under duress. They are making a notable run for the Stanley Cup. Now in the second round, they continue to play brilliantly, despite last night’s loss.

The Oilers’ performance should be of no matter except (and this is a big “except”) their games have been taking place late in the evening. Because I am a devoted hockey pool member with players selected by my beloved (my love for hockey only goes so far), I am invested in how well all teams are performing.

(For the benefit of those who do not know what a hockey pool is [primarily my family], I choose the well-performing players from teams I believe will have success in the playoffs. [Liar. J. chose my players.] Players are eliminated as their corresponding teams are. By retaining the most players through the final round, I have the best chance of winning the title.)

So I’ve been staying up late watching hockey and counting my points. Thanks to J.’s wise selections, Annie’s Agitators is currently second, neck and neck with Jesse’s Water Wings. J. lags well behind, having chosen an inferior team for herself. (I take credit for my success, despite J.’s doing all the heavy lifting.)

But, let’s not forget the compounding role of factor 2C: Jelly, never an avid hockey fan, sleeps through long evenings of our rooting for the underdogs. She startled awake once to J.’s raucous cheering after a goal, but the rest of the time she has slept soundly through our deriding the referees. Jelly would never manage to awaken with the birds if she stayed up with us to watch. Perhaps I should follow her lead?

Basset hound Jelly sleeping in awkward twisted position

 

Tears for fears

Pill with image of Canadian flag on it

I visited the pharmacy today and left $74 poorer with a large medication stash. I whipped out my credit card to pay for the portion that was not covered by my insurance plan. I am lucky that I have adequate funds to pay for my drugs. Some people don’t take their drugs as prescribed because they can’t afford to.

The prohibitive cost of drugs in our land of universal health care has been in the news recently. The reality of the problem hit me last week, when Dr. Foie Gras seemed overly preoccupied with the prohibitive cost of the new gout-busting drug he thought might help me. He actually checked whether my drug coverage would be adequate during our visit.

Then yesterday at the Cancer Centre, I asked Dr. Blood’s fellow about the safety of my taking this new medication. Dr. Fellow noted that, in order to cover the drug, the insurance company would need a letter explaining that I could not take the cheaper alternative. Since the cheaper drug may have caused my liver to fail 4-1/2 years ago, I’d imagine that letter would be fairly straightforward: I’d be taking my life in my hands if I took the cheaper drug.

Then Dr. Fellow questioned who would write the letter, asserting that hematology was too busy and that I should ask Dr. F.G. or even Dr. Family, although he wondered whether Dr. Family would have the authority to speak to my exceptional status, blah blah blah. After Dr. Fellow left the room, I became overwhelmed and even a bit teary.

J., a master at not reacting prematurely, ignored Dr. Fellow–or is that Dr. Roadblock?–and hushed me up so she could listen to his conferring with Dr. Blood. Dr. Blood immediately recruited the clinic pharmacist, who wrote the necessary letter.

Then Dr. Blood came in to inform me that she would be facilitating my approval for that drug. She noticed I was a wreck and said, “You look teary.” Of course her compassion sparked more tears. As I collected myself, J. said, to my surprise, “Annie is just worried about your leaving.” Why hadn’t I thought of that? Of course I was, and am, worried about Dr. Blood’s departure and how I’ll manage with her replacement. I’m worried that simple things, like getting approval for a new drug, will become more difficult. That’s enough to make anyone cry, isn’t it?

There is an ease that comes with a doctor’s knowing me and understanding my needs. Were I not so overwhelmed by her imminent departure, I’d have trusted that Dr. Blood would solve that day’s problem on the spot. And now I must trust that whomever she chooses to replace her will do the same. I am relieved to report that Dr. Roadblock won’t be her replacement; he told us as much.

I have one more appointment with Dr. Blood before her sabbatical starts. I’ll probably cry since, among other things, she’ll be missing my fifth cancerversary. Without her, there would be no fifth cancerversary. But there’s a more important matter at stake: what if the new doctor doesn’t like my baking? I’d rather worry about something trite for a while, if you don’t mind.