My head may be in the sand but I can still hear you

Many people on a beach with their heads in the sand

While everyone else was back-to-school shopping, I was back-to-size-8 shopping. I wanted a few clothes that fit my new body, however temporary, so I scoured every sale rack I could find. I didn’t buy much since this petiter me may be fleeting, but I was tired of looking schlumpy while my body sorted itself out.

No, I haven’t gained all that weight back. Rather, I’ve lost another kilo in recent weeks. No wonder I was nervous about yesterday’s appointment with Dr. Blood Lite. “I have been eating more,” I told him, “but not enough to gain weight.” Although I feared his wrath, he is too kind to be angry.

After discussed my leukemia, which seems to be stable, he asked whether I’d ever reviewed the progression of my liver disease with Dr. Foie Gras. Where did that question come from? I told Dr. BL that, no, Dr. Fois Gras and I had not discussed my liver’s prognosis, but likely because I had never asked.

As much as I want all the information I need about my various ailments, I don’t want it before I need it. I may not ask the questions but I still know what the potential outcomes are. I told Dr. BL, as I’ve told you, my faithful readers, that I can only think of one of my illnesses at a time or my anxiety overwhelms me. Mostly I pretend I only have leukemia and forget about all that other potentially deadly stuff.

For many years, I have been low on my liver doctors’ totem poles; the patients they focus are often in acute liver failure or have more aggressive liver diseases. They need liver transplants or they are dying. I was one of them once, about five years ago to be exact, but I’m not right now. I only think of myself as someone with liver disease when my liver is malfunctioning. I know what a failing liver looks like, but I choose not to ask for details.

I see Dr. Fois Gras every six months or so, he takes a closer look inside me once a year, and he reviews my blood work quarterly. My blood test results have never garnered a telephone call from his office. No news is supposed to be good news, right?

Usually my denially approach works, but it failed last night between 12:30 and 3:30 a.m. when I stared at my ceiling, listening to both J. and the dog snoring, and wondered if something was terribly wrong with my body and no one was telling me. Maybe Dr. BL was afraid to share his concerns after I’d put on my blinders in front of him. Or maybe he was being thorough since he didn’t know me all that well. It must be the latter.

If he were that concerned, he would have told us to cancel a trip we’ve planned, but he didn’t. He encouraged us to go even though it’s very far away. He even mentioned that our destination country is known for many well-respected hematologists.

You might wonder where we’re going, but that will have to wait for another post. First, I need a good nap.

 

 

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What kind of survivor are you?

TV Survivor logo

Is today really my 5th Cancerversary? I know, I can’t believe it myself. 5 years ago today I found out I had cancer, then I almost died, but I didn’t. I’m alive, I’m alive, still!

Come to think of it, is today the actual date? It depends on how you define the term. Should I make it the day that the astute on-call hematologist told me she thought I had CML, or her confirmation later that week with results of a bone-marrow biopsy? I’ve chosen the latter as the date of note. By the date CML was confirmed, I had overcome my overwhelming denial and was ready to accept the reality.

I wish I could be celebrating, like many others do, the date that cancer was eradicated from my body, whether through surgery and/or radiation and/or chemotherapy, but I don’t have that kind of cancer. I am celebrating 5 years of living with (or should I say, “not dying from”) cancer, which is a whole lot better than the alternative. With the wisdom and guidance of my stellar medical team, I am still here. Sure, I’d prefer to be rid of my leukemia altogether, but that’s not the CML way. Technically I may be in a remission of sorts, but I am not cured and, as far as I know, I never will be.

Five whole years of leukemia and I’m not dead yet. It begs the question, have I been pulling your leg all these years? Do I really have cancer? Yes, the doctors tell me I do. Remember, I am not a writer of fiction.

This is how I know I still have cancer: I hang out with other cancerous folks every 6 weeks of late. This more frequent cancer-centre visit schedule reflects both Dr. Blood and Dr. Blood Lite’s concerns about my goutiness and my weight loss. I trust I will be on a less frequent cancer-reminder schedule sometime soon.

Have I convinced you that I do have cancer, even though it’s not killing me, or at least not yet? Whatever, I believe strongly that a milestone like this should be celebrated. It’s an accomplishment of sorts, even if I didn’t make it happen.

J. asked me how I wanted to celebrate the day and, after giving me approximately 30 seconds to deliberate, she booked us a quick trip away. And today, when I have coffee with a few dear friends I don’t see often enough, I may order a small hot chocolate, but only to get my doctors off my back. Or maybe I won’t. I’m lactose intolerant.

I also celebrated by wearing my leukemia shirt to the gym. It subtly screams SURVIVOR on the back. A fellow yogi with whom I’ve exchanged pleasantries in the past asked me what kind of survivor I am, so I told her with undeserved pride. I think she was disappointed that I had not won that Survivor television show. Imagine me on a desert island fighting for my life. What if there’s no pharmacy? No blood lab? I’d be sunk.

Tonight I’ll be raising a glass of fizzy fruity soda from a fake champagne bottle. Don’t let that stop you from imbibing something stronger or, alternatively, eating cake. Together let’s toast 5 years of still living. L’chaim!

The luck of the draw

Toddler sitting on sidewalk with little puppy kissing his face

I love my PALS visits with Jelly. I get to go to new places and meet new people and watch them adore my dog. Of course I love to tell them funny stories about her, but I don’t go on and on about her because it’s not all about us, especially during these visits. I have to find other topics of conversation instead.

I’ve long accepted that I’m terrible at small talk. Getting-to-know-you conversations are hard for me in general. I was particularly stumped at a PALS outing last week.

We had volunteered to visit a special nursing home. The residents there are hard-to-place older folks who would not otherwise be accepted into seniors’ homes. Many are alcoholic and/or mentally ill, and many once lived on the street. The alcoholic residents are given controlled amounts of alcohol at regular intervals. Without access to alcohol, these people would likely continue to live in poverty on the streets. The residence’s goals are to reduce these people’s run ins with the police and their need for emergency health care.

I’ve been in many seniors’ homes with Jelly and this one was more run down than others I’ve seen. (Imagine the challenges gathering funding for a place like this.) So were the people there, many of whom were socializing in the common area when we arrived. Still, this special residence gives them a roof over their heads and three meals a day, access to laundry facilities, and on-site medical care. There are significant daily supports in place, so they don’t need to be trying to survive on the streets anymore.

I didn’t know what brought these folks to this residence and my asking them would have been inappropriate. Of course I wondered about their pasts, though. Sometimes their mental-health issues were apparent, but others simply appeared poor and downtrodden. I hope my discomfort wasn’t obvious, but I felt even more awkward than usual finding common ground for conversation.

I often fall back on one strategy when I have no idea what to say. On all our PALS outings, people can choose to visit with the dogs or not, so those that do attend are clearly dog lovers (or cat lovers who are willing to accept second best). Their interest in animals gives me an easy inroad: I ask them about their experiences with dogs. That breaks the ice, probably for me more than for them. People love to talk about their dogs–I can relate to that–even if they may be sad recalling better times in their lives.

On this visit, our dog conversations reminded me that our lives may not have been all that different at one point. These people weren’t born mentally ill, although they likely were harbouring bad genes that would reveal themselves later. They likely lived with family when they were younger, just like I did. But at some point, poverty or mental illness or addiction derailed their lives. I expect they’ve had bad luck, while somehow I did not. Life is truly unfair.

I’m glad this special residence can provide these folks a home. Everyone deserves at least that, no matter what.

My 500th blog post, and I am speechless.

What makes this occasion momentous? My having published 500 excessively wordy posts? Or your kindly read 500 instalments of my mind’s random meanderings? I give you a lot more credit for your persistence than I give myself. My job takes will and dedication, yes, but yours takes endurance. By now, you must feel like you’ve run one of those ultra marathons in the desert.

You’ve persisted despite never knowing what’s going to arrive in your inbox. Occasionally Sadness makes an appearance, or I seek a silver lining in some crummy situation. Too often I drag you through the mundane details of my latest medical trials and tribulations for 500 words (x2 or 3 or 10). I drone on and on. But you’ve endured. You deserve credit for that.

You likely thought the time commitment I’ve demanded would be freed up by now. So did I. Plus my memory is so poor that I’m surely repeating myself more than I realize. “Oh, not that joke again,” I hear you muttering. Or, like J., you might be moaning, “Not that dead horse (or painful finger) again.”

Please know, dear readers, that I’m okay with your calling it a day. I’ll keep writing whether you continue to read my ceaseless drivel or not. Writing helps me to work through what is happening in my life. Through my writing, I gain perspective on the absurdity of living with an illness that is incurable, but, to this point, not deadly. Sometimes I find that I’m less scared of my leukemia when I write about it here. That’s why I keep at it.

And so, early this morning, imagine my panic when I was locked out of my blog for the very first time. I wanted to write this post, but I could not access the blogging site. What an opportunity I was granted to remind you, for the 45th time, that not all anxiety is bad. Sometimes people become anxious because they are facing a genuine threat. If you were face to face with a tiger that had escaped its cage at the zoo, even you, brave one, would likely find yourself anxious, and your anxiety would be well founded. And so, this morning, I was paralyzed, with reason I believe, by the thought of losing all the hours I’d devoted to my magnum opus.

But within seconds, I envisioned the worst possible scenario, as is my anxious nature. Had I been hacked? Had I lost my blog forever? What kind of idiot doesn’t back up her life’s work? A few hours and a downloaded malwear program later, I learned my computer was fine. And then, magically, I could log in to my blog again. From what I could tell, everything was intact. Most likely the blogging program was down when I’d tried to visit earlier.

So my blog was saved, but my idiocy is still problematic. And so, in honour of this 500th post, may I remind you to back up your work. You’d hate to lose everything you’ve worked so hard on forever and know you could have prevented the disaster. Now I must learn how to back up my blog. Better late than too late, I say.

Man clutching head on down on computer keyboard

 

Dr. Whatever, for now

I write you today with some trepidation, knowing that I will lose at least my favourite follower because of the subject matter. After the last post I published on gout, J. informed me that she would stop reading my blog if I wrote ever again on this subject. Her point was valid, but I can’t just make this whole saga go away. I have provided due warning for what follows.

Lost readership or not, I know you’re dying to hear about my visit with my new specialist on Friday. I told you the appointment was upcoming, I solicited creative doctor names, and now I have to tell you how it went. I’ve said before that I’d never leave you on tenterhooks, mostly because tenterhooks sounds painful.

Dr. Whatever–I’ve not yet committed to a name–was lovely and thorough. She reviewed my medical history, and then completed a physical exam, bending all my joints this way and that. She questioned me about joint stiffness because deposits are inevitable after prolonged high blood levels of uric acid. I may be uptight, but I am not stiff, I told her. “It must be the yoga,” I said.

Dr. Whatever informed me that I might be surprised to notice my joints moving more freely as these deposits disintegrate with the help of my magic pills. I couldn’t help but ask, “Will I be less clumsy?” She laughed at this question, which was probably her kind way of saying no, you will forever be a klutz.

Then she took a look at my not-so-little inflamed finger, the one that has been haunting me for weeks now. It is much improved but the progress has come to a halt of late. Because it is still so “angry” (her word), she would like me to get a teeny weeny ultrasound to determine what’s going on under there, and to rule out an infection. In fact, she seemed somewhat alarmed by the inflammation. Depending on the results of the ultrasound, she may enlist a plastic surgeon to fix me up once and for all.

I am sharing this information with you because I’m imagining that this intervention may make it difficult for me to type my blog, unless I can recall the two-finger typing that got me through graduate school. Like any good therapist, I’m providing ample warning of my unavailability so you can find other vacuous ways to fill your time in my absence.

Premature baby undergoing ultrasound on headThis little surgery, if needed, may not happen until August, however. One of the few downsides of public health care is that a doctor’s sense of urgency may not result in an immediate appointment for assessment. My attempt to book my “urgent” ultrasound resulted in an appointment three weeks hence. But I understand. I imagine there are many preemies in line for those teeny weenie ultrasound machinies. I will gladly wait.

Boy, J. is going to have no idea what’s going on in my life if she ditches my blog. You old faithfuls may have to fill her in.

What’s in a name? Everything to me.

I lied. I promised you the gout saga was over, and largely it is for you, dear readers, but for me it has only just begun. This last episode was my greatest ever. After years of practice, I have finally attained a an A in Advanced Gout. How about that?

My dear Dr. Family is part of a conglomerate of physicians and health professionals in the city known as a primary health network. Her participation in this network facilitates her access, on an as-needed basis, to a variety of specialists for consultation. Last Friday when I stumped her–gifted patients do that to their docs sometimes–Dr. Family contacted the health-network rheumatologist for guidance. From this specialist, Dr. Family gained useful information on gout management. The specialist also noted that, if I felt it would be helpful, she would gladly meet with me directly at some point. Good to know. Now that I have achieved the pinnacle of goutiness, I have become a coveted patient to any self-respecting rheumatologist. No wonder specialists fight over me.

A few days after this consult, the rheumatologist called me to set an appointment. Somehow my stellar achievement in Advanced Gout warranted me an urgent referral. Wow. I felt like I’d just won a 4-year all-expenses-paid scholarship to Oxford. When I called to book in, I was offered my pick of possible appointment times within the next two weeks. I have done so well in gout that I have been awarded the most valuable scholarship ever: immediate access to a specialist.

There’s a reason I’m telling you all of this, beyond my wanting to revel in my rheumatological prowess: I can’t think of a good name for this doctor. I’m stumped.

Basset hound with head cocked, quote: "What's in a name?"If you’ve followed my blog for any length of time, you’ll know that I take great pride in naming the characters in my stories. Forgive the anything-but-humble brag, but I am proud of my name creativity. There’s Dr. Blood and her entourage of Bloody Residents, Dr. Liver, who evolved into Dr. Fois Gras, and Dr. Heartless, the only doc I’ve ever had who failed me. You may recall Dr. Skeeter, the infectious disease specialist, Dr. Woman, (woman parts), and Dr. Knife (figure it out). Remember Dr. Skin, the kind dermatologist who had, to quote my funny self here, “chosen to spend his adult life examining people’s zits”? Even Jelly has Dr. Animal. Then there are the other non-medical folks: Ms. Making Me Postal at the post office, Ms. Druggie (the pharmacist), and Little Mr. Sunshine, the generous platelet donor, to name a few.

Enter Dr. Rheumy (that’s lame), and I’m stumped. “Dr. Ouch” would suggest she’s hurting me when in fact she’s trying to relieve me of my pain, and “Dr. Gout” would suggest an unduly narrow scope of practice. I have two weeks until my initial appointment to arrive at an appropriate moniker. (Yes, you too can see a specialist remarkably quickly when a mushroom cluster erupts in your finger.)

I welcome your naming ideas, but, because this is my blog, I will make the final decision. Once I’m underground, I’ll relinquish all creative control to you, dear readers. I urge you patience since I may be here for a while yet.

 

 

Out, darn gout: the neverending story

I love Dr. Family, in a patient-doctor sort of way. She is sharp, effective, and compassionate. When I need her, she is there, three days per week. I simply have to plan my medical crises on Mondays, Wednesdays, and Fridays.

In the past when I’ve called her office needing an urgent appointment, her assistants have slotted me in promptly, usually the same day. But because there are many babies being born amongst her staff, these assistants are largely unfamiliar with me. They do not realize that I never call without a reason, and that, when I do call, I need to be seen promptly.

Last week, in the midst of fretting about Jelly’s health, I was also concerned about my own. My gouty finger was not healing and I decided a call to my trusted professional was overdue. I contacted the office first thing Monday morning and had an appointment within a few hours.

Dr. Family assessed me, and gave me a clear plan of action, which I followed to the letter. It helped but only temporarily. She also told me to call later in the week if I needed further help. So I did, only to be told that the doctor was too busy to see me that day.

I understand. Dr. Family only has so many hours in the day, and as attentive as she is when I see her, she could not slot in another appointment that day. But I still needed help before the weekend, so I asked Ms. New Girl if I might email the doctor a picture so she could give me some direction. I was pushing the boundaries here, but only because I was at a loss.

Tight bunch of tiny white enoki mushroomsI’d love to publish the picture I sent Dr. Family here, but to date I’ve spared you all gruesome images of my ailing body parts. I fear I’d give many of you, my faithful readers, nightmares if I shared the frightening shot of my gouty finger here.

Imagine a cluster of tiny mushrooms trying to burst through the end of my finger. That’s not as scary as the real thing, is it? I guess you can’t really judge since you haven’t seen the photograph, but trust me, it is.

Upon seeing my miraculous feat of nature, Dr. Family called me promptly but I missed her. Then she diligently consulted with a colleague, who suggested a new course of action. When I called back, Ms. New Girl told me not only to come in, but to stop by my pharmacy along the way to pick up a medication she would be injecting. Saved by the picture.

I’m not Dr. Family’s only patient, and I can’t expect her to fit me in whenever I need her. I could go to a drop-in medical clinic and discuss the matter with an unfamiliar doctor that does not have access to my medical history, but imagine how long it would take to bring that doctor up to speed. Whenever I can, I prefer to return to the doctors’ office where everybody (now) knows my name. Thankfully, Dr. Family agrees.

The injection worked famously. My little mushrooms are slowly disappearing, along with the pain they’ve caused. And so the saga comes to an end.

Green Thumb, meet Red Finger

a few radish sprouts growing

I feel so proud. After a week of building (I drilled two screws in) and seeding (I was deemed competent to seed, after intensive instruction) our vegetable garden, I am thrilled to report our radishes have sprouted. I can’t wait to eat the vegetables of my labour.

I’d hoped to continue to be involved in our burgeoning garden, but a medical complication has arisen: the last joint of my right ring finger is swollen, red, and hot enough to brand you, and even the lightest pressure on it brings excruciating pain. That O I just typed? It hurt like the dickens. So did each L and every period. I considered writing this post as one run-on sentence, but I didn’t have the gumption.

In yet another case of forgetting what I should know by now, I’ve been ignoring increasing pain in this finger over the last few days. The pain is at its worst in the middle of the night, and has woken me from a deep sleep four nights in a row. “What could that be?” I asked my oblivious self. Eureka! It’s gout.

I’ve never experienced full-blown gout in a finger before, although it was numbness in this finger that led to my new gout-busting regimen (recall those unsplittable pills). I didn’t realize how much I used my right ring finger–ah, to be a leftie–until it caused me jarring pain to do so. Brushing my teeth, washing the dishes, anything that involves holding, my ailing finger wants to jump in and help out. I squander considerable mental effort to stop myself from using this finger.

People usually experience gout pain in major lower-body joints, characteristically in the ball of the foot. Imagine searing pain with every step you take, your foot so swollen that your shoes don’t fit. In the past, my feet have usually taken turns being gouty, although sometimes they want the simultaneous privilege of paining me.

So when I finally realized what was happening, rather than jump on the medication bandwagon, I let it escalate for a while longer. What kind of baby uses liver-toxic medication for pain at the end of a finger? This kind of baby. Now that I’ve started self-medicating, I hope the attack will pass soon.

There are several ways I could view this turn of events. I could focus on how painful gout is and how miserable it makes me, misery that is only compounded by the lack of sleep. (The pain is worse at night.) That attitude isn’t helpful, is it? Or I could be hopeful that the new gout-busting medication I’m on, those other unsplittable pills, is working. I knew those pills would make things worse before it made them better. I’ve decided to make this my first gouty step toward eliminating my gout forever.

I’m anticipating one more collateral benefit: for now, I must delegate all gardening and other household tasks, including dish-washing, to J. (Not just pressure but heat exacerbates the swelling, compounding the pain.) J. may especially resent the extensive garden thinning required when she realizes how much I have overseeded. Oh well, she’ll get over it, as will I.

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….

Musings on avocado toast

Avocados have gotten a bum rap of late on two fronts. In case you missed it, an Australian real-estate mogul had the gall to assert that the younger generations cannot afford to buy their own homes because they are wasting their money on frivolous items like $19 avocado toast. Needless to say, the social-media backlash was fierce.

Don’t tell me you’ve missed the trendy toast movement altogether. FYI, it’s not all melted margarine slathered on highly processed white bread anymore. The toast I’m speaking of has fancy toppings, including but not limited to avocados, smushed on thick slices of organic sourdough toast. You can order it in restaurants with a variety of additional toppings, at unfathomable prices.

I’ve read about the toast movement but I’ve never gone out to a restaurant in search of avocado toast because I don’t eat out, remember? Since I was placed on a sodium-restricted diet in 2004, I have largely been restricted to reading about the hot new restaurants in town on the internet. Sometimes I salivate at the pictures, but God would punish me if I deigned to consume their wares. Did I mention how much weight I gained on my last vacation, despite my only eating only one pain au chocolate over two weeks? No? Well, let’s keep it that way.

The mogul’s lame argument was countered by a respected business writer at the Globe and Mail. Said writer noted that young people would need to consume over 33 slices of overpriced avocado toast daily to spend the $180,000+ dollars Toronto house prices have risen over the past year alone. Anyone consuming that much avocado toast has a bigger problem than covering her house payments. I suspect a binge eating disorder, but I’d need more information to make a definitive diagnosis.

If these house-less restaurant-going kids decide, instead, to make avocado toast at home in order to save a few dollars, they need to be aware of the second strike against the poor avocado: the potential dangers of avocado-pit removal. According to recent medical reports, a phenomenon dubbed avocado hand is showing up increasingly in ERs everywhere. The injury results from a missed stab at the avocado pit, where the knife slips off and pierces the palm of the hand. These cuts can be deep, and may therefore result in serious infection. A local emerg doc noted that his hospital sees approximately one case of avocado hand weekly.

Thankfully we have socialized medicine in Canada, so that your ER visit will not cost the you anything except your pride. Rest assured the ER docs will view you as one of those earthy millennial types who needed a healthy snack following hot yoga to sustain you through the afternoon.

I’m not that person–I prefer to keep my yoga sweat to myself–yet I confess that I too like avocado toast. I often slather half an avocado on my morning toast, sometimes topping it with an also-trendy poached egg. It’s a surprisingly filling meal. But I’m too cheap to pay $15 for all this rigamarole at a restaurant. I’ll pit my own avocado, thank you very much, very carefully, and pray for no deep-tissue injury since I’m infection prone. Already I’ve cost the health system much more than my share.

Picture of avocado on toast topped with poached egg and herbs