A reminder that things happen in their own time

Vacations are good reminders of how lucky J. and I are. We have the means and the flexibility and the health, especially the health, to travel. Pack a few clothes and my pharmaceuticals, find someone to care for Jelly, and we’re out the door in no time.

As my 5th cancerversary celebration, this trip has special meaning. That J. surprised me isn’t saying much; I’m so oblivious that J. could plan anything without my knowing. My ignorance doesn’t make me any less grateful for her efforts, however. Her summer is absurdly busy–she married 9 couples last weekend alone–yet she managed to squeeze in a few days off somehow.

And so we find ourselves hanging out in another city, walking our socks off (such a strange expression, since shoes hold our socks in place), and enjoying being somewhere different. It wouldn’t really matter where we went or what we did; I’d be happy we acknowledged the milestone.

Packing for this trip was a breeze, at least to start. Sunscreen? Check. Walking shoes? Check. Personal pharmacy? Checks. But what to wear? I am temporarily wardrobe challenged, although you may resent my complaining about my shrinking from Large to Medium. I’m not complaining; I’m simply telling you I need a few clothes that fit.

Cancer killed my love of shopping long ago. I never want to overspend because whatever I buy today may not fit tomorrow. Still, I anticipated shopping success on this trip, so I left space in the suitcase for my purchases, and packed only three shirts for three days. I failed to factor in the possibility of a heat wave and the discomfort of a sweaty t-shirt. I also failed to consider that my search might fail.

Chopped chef with sweaty bald head preparing his dishTwo days passed, two hot and humid days, and my shirt inventory was almost depleted. Last night, after returning to our hotel, making dinner over a hot stove, the sweat dripping off me (I felt like a contestant on Chopped), I had two choices: I could shower or faint from heat stroke. I chose the former.

After the shower, I couldn’t put on the same wet t-shirt without causing a scene. J. suggested I wear my last shirt last night and then again today. Either that or try out the emperor’s new clothes, which would have caused an even better scene. Wearing the same shirt two hot days in a row would have to do.

After my shower, I went to get my last t-shirt from my suitcase, only to discover that I was smarter than I thought: I had brought a fourth shirt just in case, but I forgot I’d packed it. (Now do you understand how easy it would be for J. to pull off a surprise?) Of course the fourth t-shirt was my #grateful shirt. Do you even have to ask? And, yes, I was grateful to find it.

In time, I will outfit myself with a few new shirts that fit. I was reminded that not everything happens on my schedule. Until then, I will make do with voluminous shirts.

“Why no mention of pants?” you ask. For a long time now, I’ve known better than to throw out my skinny jeans. Life is full of surprises.

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!

Introducing Dr. Blood Lite

This one’s for you, Janet.

You may wonder who this Dr. Blood Lite is, and how I named him without consulting you first, my dear readers. This time I didn’t need your help, thanks to a comment on a previous doctor-naming post. In that comment, a beloved beer connoisseur, who would never imbibe the beer of the masses, came up with this perfect name.

If you haven’t yet put one and one together, Dr. Blood Lite is Dr. Blood’s locum for her sabbatical. He is a lovely young doctor and, since he’s been trained by Dr. Blood, I know he’s learned from the best. Dr. Blood had told us she had considered her replacement carefully, and she hit the jackpot. Dr. B.L. seems calm and kind and he even introduced himself using his first name. You know how I like to be on a first-name basis with my physicians. It gives me a false sense of collegiality.

Although I did not recognize the newbie, we had met once before when I was an inpatient on the hospital’s palliative unit. Do you recall that hospital stay, the one where the hematology unit was full so I ended up lodging with the dying people? I could not remember him but J. clearly recalled Dr. B.L.’s Edmonton Oilers lanyard. In fact, I envision her hijacking my future appointments to talk about McJesus. That Dr. B.L. could remember our brief encounter is a miracle on par with McJesus’s MVP performance last year.

Back to my health for a moment. Dr. B.L. told me that, if my blood work is to be believed, I am holding steady on all fronts. This is good news. There are no significant changes since last visit, which means I will stay on my current treatment plan.

My blood work did not explain my appetite loss, which was a relief. I had pretended I wasn’t worried about my disinterest in food, but I was lying, as you probably suspected. I may have a perfectly reasonable medication-related explanation for the pounds melting off me, but as a graduate of the School of Something Could Always Be Seriously Wrong, I’ve still wondered whether my liver might be tanking. As of today, I worry no more. My liver is a-okay.

Despite my apparent well-being, Dr. B.L. was alarmed by my rapid weight loss. So alarmed, in fact, that he said something that no doctor has ever said to me before: he told me to start eating more. He forbid me from losing any more weight and said he expects me to pack on a few pounds by the next time I see him. He even suggested ways I might increase my caloric intake.

My inside voice could not help but giggle in response to Dr. B.L.’s concern. I wanted to say, “Do you realize who you are talking to? I am a glutton! Cookie Monster is my doppelganger. Or is it Miss Piggy? Whatever, you’ve got me all wrong, doc.” Instead, I listened respectfully and told the doctor I would take his concerns under advisement. Yes, I used those words. And he smiled, just a little. I think we’re going to get along.

Now I must force feed myself some dinner. Doctor’s orders.

arm reaching table full of appetizers

Volunteering by proxy

Calgary Stampede midway crowded with people

That’s me in the top right corner.

I must apologize for not writing yesterday, especially since I know how you hang on my every word. I spent the day carousing at the Stampede grounds. Just kidding. I’d rather sleep than watch adults young and old embarrassing themselves in public.

Stampede is a time for reckless alcohol overconsumption. With that comes an increase in philandering, and of course, STIs and unwanted pregnancies, despite the local campaign to “put a condom on your cowboy.” Not surprisingly, divorces spike following the week-long party. Stampeding sounds too risky to me, so I hunker down at home instead.

J., on the other hand, plans two visits to the grounds with our good friend, Triple D. They will be there from supper time until midnight both nights, but they won’t have time for drinking or philandering; they’ll be selling lottery tickets for fancy cars. They are volunteering for this task in support of PALS. J. noticed that PALS was seeking people for this fundraising event, and not only did she volunteer for two long shifts, she signed up Triple D, who is known for always making time for a good deed.

When I became a PAL, I learned that, in addition to our regularly scheduled visits, I’d be expected to support the organization in other ways. This included, for example, interviewing new recruits, helping out on the multi-station dog-assessment day, or attending fundraising events with or without my little pal in tow.

Most of these activities involve longer hours than I have the stamina for, so I pass. I do my part by volunteering for one-time visits–last week’s parade is a recent example, although that day felt more like a gift than an obligation–on top of our regularly scheduled visits with the old folks.

The same is true for Calgary Blood Services. I can’t donate blood, so I feed soup and cookies to those who can, and try to encourage healthy others to donate in my stead. I’m grateful to J. for persisting in giving despite her fainting after her second blood donation, and to my dear friend known affectionately as Spongebob (for reasons that will remain a mystery to you) who donated for the first time last month with no ill effects. Anticipating the milkshake he’d be buying on his way home probably helped him through the itty bitty pin prick.

Maybe I shouldn’t say that I pass on the volunteer duties I can’t fulfill since the truth is that I pass them on to gracious and willing others wherever I can. I wish I could volunteer myself, but I know my limits. A 6-hour sales shift ending at midnight–assuming I did not sleep through the chaos like Jelly did at that parade–would knock me out for days. I also know that the screening interviewers at Canadian Blood Services would laugh at me if I tried to donate blood despite my leukemia. I know what my limits are, and that there are some things I can’t do, however much I wish I could.

Kudos to those folks, J. et al., who donate their time or their gift of life (blood, that is) in my stead. Their generosity makes my heart sing, and I’m not the heart-singing type.

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

 

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….