C is for Colleen

Closing Time

When you get diagnosed with incurable cancer, you just assume that your friends will outlive you. You may think a lot about how long you have left (an exercise in futility, by the way) but you take it for granted that the people you love will still be there.

Over the past week, I was reminded time and time and time again that life is fragile. That whatever I think I might know about beginnings and endings is nothing but a fairytale. In addition to it being scan season yet again, which always finds me anxiously holding my breath and imagining the worst during the agonizing wait for the results, a good friend’s father passed away. A devastating loss I that cannot even begin to imagine.

And then another blow – the sudden, unexpected death of someone who was supposed to always be there; someone who had always been there. A colleague and, more importantly, a friend.

I was lucky to work with Ricky for 12 years – a long time in any job, but not nearly long enough. We quickly discovered that we had a lot in common and we would spend hours talking about everything from politics to restaurants, from the very territorial Canada geese on campus to our families – I may be Auntie extraordinaire, but he definitely held the ‘best uncle’ crown and collectively, we definitely had the best nieces and nephews in the universe.

We both had extremely poor boundaries when it came to work – Ricky was always in the office and answering emails well before the rest of the world was even thinking about getting out of bed. I worked late into the evenings. But we both did it because we cared deeply about the work that we did, about the students we were helping. Sometimes we would jokingly refer to each other as our work spouse, but really, we were more like Statler and Waldorf from the Muppets, especially when we would text each other commentary during Town Halls at work or while watching political debates on TV.

Ricky and I were each other’s sounding boards on all sorts of things. He was the best kind of listener, meeting you where you were and sharing in your joy or your sorrow or your frustration rather than trying to fix things. He would offer suggestions or solutions only if that’s what you asked for. And, inevitably, he would have an awful dad joke, or a movie reference, or a song that would fit the situation perfectly.

Ricky took intense pride in helping others shine. He was like a poppa bear to so many of his students, staff and colleagues – advising, mentoring and guiding them, finding opportunities for them to grow, making sure they had a voice and a seat at the table, stepping back and putting them in the spotlight, inviting everyone out for drinks and never letting anyone else pay. They were family and he would do anything for his family. I was family, and I knew he would do anything for me.

Ricky was among the first people I told about my diagnosis and he continued to be someone I could reach out to when I needed a listening ear. And, just like he always did, he met me in my joy or my sorrow or my frustration. He didn’t try to fix things or find the silver lining because he knew that sometimes bad things just happen. And they don’t happen for a reason. And there isn’t always a bright side.

And that’s how I’m feeling right now about losing my friend. It doesn’t make sense. It’s not fair. I hate everything about it. There is no reason and there is no bright side.

Always ready with a musical reference, after the last time we saw each other in person (shortly before Christmas), Ricky texted me some of the lyrics to a song. It was one we’d sent each other a few times before, including the day I moved to a different building and we were no longer sharing office space, and the day, just over a year ago, that campus shut down and we all started working from home. It seems fitting to end with that text:

“So gather up your jackets, move it to the exits
I hope you have found a friend
Closing time, every new beginning
Comes from some other beginning’s end”
(from Closing Time by Semisonic)

Ricky was the kind of person who would send you a photo of the sunrise just because.

New Year’s “Not Resolutions”

Happy 2021 Everyone! I have had “write a new blog post” on my to-do list for a very long time now. In fact, I’ve started countless posts in my head while on my (almost) daily walks but just haven’t managed to find the energy to actually write. Perhaps because I spend so much of my workday staring at a computer screen and had no desire to spend my evening the same way. Or perhaps it’s just sheer exhaustion from everything 2020. Either way, with a new year, I figure it’s probably time for a new post, although I know better than to resolve to post more often in 2021!

Speaking of New Year’s resolutions, I’ve really never been a fan. My own personal annual resolution is typically to not make any resolutions (making me one of the few people who actually manage to keep theirs!) All jokes aside though, setting grand New Year’s goals implies a level of control that few of us actually have. For example, living with Stage IV cancer, my biggest goal for 2020 was simply to still be here in 2021! (Although perhaps I should have been more specific, since by “being here” I didn’t actually mean exactly right here in my living room, since I can’t really go anywhere else due to the lockdown…) But no matter what goal-setting strategy I apply, I don’t have much control over how long my current treatment will keep working. And 2020 clearly showed us that there are a lot of other things we can’t control either. So perhaps those big, ambitious goals aren’t the way to go.

That being said, I do like the idea of taking time to reflect and trying to be better and do better but shouldn’t we be doing that more than just once a year? I guess there’s just something about starting a fresh calendar that makes us feel like it’s our big chance to do things differently than last year; or that it’s a clean slate, allowing us to imagine our ideal self and hopefully will that into being (although I’m starting to suspect that “really wanting it” isn’t quite enough as I’ve been trying to will 6-pack abs into being for years).

2020 made most of our worlds a whole lot smaller, so perhaps that is where we start – with the little things. Forget the clean slate, forget the fresh start, forget the massive list of big, hairy, ambitious goals for things you can’t actually control. Instead, just find one small thing – one small thing you can be grateful for today, or one small thing you can do today to be healthier, or one small act of kindness that you can do for someone else today. And let that be enough.

One not-so-small thing that I am grateful for today is that my treatment is still working and my cancer has been stable since I started treatment just over 17 months ago. I’m somewhat less grateful for having to spend part of my Christmas vacation having various radioactive substances injected into my body for the CT and bone scans that I have the pleasure of getting every 3 and 6 months respectively, but I am hopeful that the results will be a repeat of previous scan reports. And as I wait on those, I will be grateful that I was able to enjoy my mom’s traditional New Year’s “ollie bollen” while I go on another walk to try to burn off all of that delicious fried dough. And for today, that’s enough.

Going Public

Those of you that know me know that I tend to be a fairly private person. So the circle of people who knew about my diagnosis was deliberately kept small for a long time. In part, I was still processing and didn’t want to deal with everyone else’s questions when I had so many myself. In part, it was extremely draining to tell people and I simply didn’t have the energy. In part, I didn’t want to become “Colleen with cancer” and have all of my interactions filtered through that lens.

Of course, those who know me also know I like to be in control of things. As I have detailed in a previous post, one of the many challenges of my diagnosis is that that it takes all of that away. You can’t control when your appointments and tests are scheduled, can’t control whether your treatment is working, can’t control many of your side effects. So controlling who knew and what they knew was one of the few things I COULD do. Not that I actively kept my diagnosis a secret. I just stopped telling people and left it at that, which meant that every once in a while, word would spread, but for the most part, it was my secret identity.

However, after many months of keeping my diagnosis quiet, every so often (and with increasing frequency), I would be surprised by someone approaching me with the head tilt and sad eyes that were an obvious signal that they knew. I had no way of knowing who knew and what they knew and I was rarely prepared for a conversation that they wanted to have and I did not. And it felt like what semblance of control I had was slipping away yet again.

And then, as I started going through all of my cancerversaries, I realized that I was in a much better place mentally and emotionally than I have been since this whole thing began. And I realized that in keeping such a big part of me hidden, I was cutting myself off from people I loved. Cancer is lonely and isolating enough and keeping it a secret was no longer protecting me. Don’t get me wrong, it was a helpful and necessary thing to do during that phase of my life. But I wasn’t in that phase anymore and isolating myself was no longer helpful.

I also noticed that, just as I didn’t really understand metastatic cancer before this, and had no idea how different it is from the typical depiction of cancer in movies and fundraising campaigns, etc., most other people had a fairly one dimensional image of this disease as well. And perhaps in going public, I could help change that. Having more or less lived my life this past year (from the outside, at least), anyone reading my news for the first time would hopefully view it through that lens and see that cancer isn’t always IV drips and hair loss.

So after much deliberation, I finally wrote an extended Facebook post and after much more deliberation, I eventually gathered up the courage to hit the “post” button. I then immediately shut down my computer and contemplated running away and deleting Facebook entirely! I was so worried that it would change everything.

And it did.

To my surprise, it felt like a weight had been lifted – keeping my diagnosis quiet had become a burden I didn’t know I was carrying. The outpouring of love and support I’ve received has filled my heart and soul to overflowing. I have spent the last few weeks reconnecting with old friends and connecting with people in a whole different way. And my circle of support has grown exponentially. My friend Dee-Ann put it best when she sent me the following photo:

And all that is left is for me to say thank you to all of you for your ongoing support, whether that takes the form of a Facebook message or email, the perfect card (thank you, Paula!), baked goods, lattes, ice cream and a walk along the river, funny videos and memes, books, Netflix recommendations, pulling up a lawn chair in the park or walking around and around the Inglewood bird sanctuary and talking for hours – it means more than you’ll ever know.

Cancerversaries (year 1)

Today (June 28) is my cancerversary – well, one of them at any rate. As with many major life events, it’s more of a series of moments that are indelibly etched in my memory:

the first time I knew I wasn’t just “burnt out” and that there was definitely something wrong
when I went to see my doctor and said the words, “I think I might have breast cancer” out loud for the first time. The speed at which she set up a mammogram and ultrasound was both reassuring and terrifying.
the mammogram and ultrasound appointment during which, the technician said, “You didn’t mention anything about lumps in your right breast too.” Just one of many “surprise, it’s way worse than you thought” moments to come…
the Father’s Day where I broke my parents’ hearts by telling them the news
the biopsies during which I discovered I don’t take to freezing well and felt EVERYTHING
the hypothetical date in an alternate timeline in which, if I were only stage 1, 2 or 3 and had gone through the “normal” course of treatment (chemo, surgery, radiation), I would have rung the bell and officially been a cancer survivor

But today is one of the big ones: the one year anniversary of getting the phone call from my doctor asking, “How soon can you come in?” And of sitting (and waiting and waiting and waiting) in my doctor’s office (well after closing time because she was running behind) and the nurse kept bringing me tea and looking at me with sad eyes, so I knew it wasn’t good news. And of my doctor confirming that I had invasive malignant breast cancer, not only in both breasts, but in my lymph nodes as well (surprise, it’s way worse than you thought). And of walking out of the office and sitting on a bench under a tree trying to process everything, and being taken aback that the sun was still shining and the rest of the world was carrying on as if nothing had happened.

These past few weeks, as each anniversary has come and gone, I have been doing my best to “write over” the memory by doing something positive – hiking in the mountains surrounded by nature, enjoying ice cream with my entire family, going on long walks with good friends (appropriately socially distanced, of course), eating an excessive amount of baked goods (thanks to my mom and my niece). But I have also been doing a lot of reflecting on the last twelve months.

For the most part, it feels as though the past year is something that happened TO me: I was swept along by the endless tsunami of tests and treatment – waiting, always waiting for appointments, for tests and then for test results; waiting to see what the side effects would be as treatment began, changed and progressed; waiting for my energy to return after every round of chemo. It was a year of uncertainty, not knowing whether I could continue working and at what capacity (still figuring that part out); not knowing which side effects were an expected part of treatment and which were cause for concern; not knowing whether I could still do the things that I loved. It was a year of holding my breath after every scan, hoping for the best but fearing the worst.

Looking back, I don’t know that I could have done things any differently. But I also know that this is not how I want to spend the next year, or the years after that, however many there are. I spent the past year doing my best just to keep my head above water, trying to survive not only physically but mentally, emotionally, spiritually. However, the thought of even one more month of that, let alone twelve is disheartening, to say the least. Moving forward, I want to live with intention. I’m not exactly sure what that looks like yet, but I’m working on it. Hopefully this time next year, the things that are indelibly etched in my memory are countless good times spent with family and friends, exciting new adventures, delicious food (keep the baked goods coming!), a life not quite so consumed by work (as rewarding as it can be), more travel (if it’s ever safe enough to do so), more time reading and gardening and doing puzzles and playing the piano, more walks in parks, more hikes in the mountains, making it through my never-ending to-do list…

I still have a few more cancerversaries to go: my first bone scan, throughout which the technician asked over and over whether I had any bone pain (I just thought she was being thorough); my first CT, during which they kept asking the same question again (I still didn’t take the hint); and the first appointment with my oncologist, where an inexperienced and tactless intern pulled the ultimate “surprise, it’s way worse than you thought” by casually announcing that my treatment plans had changed completely because the extent of my bone metastases meant that surgery, chemo and radiation were obviously pointless (obvious to her, maybe, but until that moment, I had no idea I was stage 4).

However, each of the the coming anniversaries will be yet another reminder that I’m tired of letting life happen TO me. Slowly but surely, I want to take back control of my story.

Still not great at selfies, but oh well.

Recalibrating

“How are you?” It seems a simple enough query, albeit one that is rarely answered truthfully (or even asked as a real question, for that matter). However even when you’re dutifully responding, “fine, how are you?” you generally have some idea of how you actually feel. Or so I thought.

About a month ago, my oncologist started our appointment with that very question. Of course, in his case, he was actually asking and so I gave him what I thought was a genuine answer: that I was having a fair amount of back pain and sciatica and that I was a little tired, but my mouth sores were clearing up so overall, I was feeling ok. He then proceeded to pull out my bloodwork and tell me just how not ok I was! Apparently my neutrophil (a type of white blood cell) count was critically low and I had a condition called neutropenia (which coincidentally causes fatigue, aches and pains, and mouth sores).

So if objective, scientific measurements were telling me there was a problem, why on earth did that feel normal to me? I mean, obviously I don’t have a strong track record of knowing how I’m doing – a year ago I thought I was burnt out only to discover I had Stage IV cancer! But having paid extremely close attention to every little symptom since then, you would think I would be a bit better at gauging my present condition.

Unfortunately, like the proverbial frog in the boiling water, my sense of “ok” appears to be out of alignment. It probably doesn’t help that I refuse to let my illness slow me down, particularly at work, where I just can’t shake the need to prove that I can do just as much as I used to and then some! Perhaps I’m still in the denial phase of the stages of grief. Regardless, I have some recalibrating to do (if I can just figure out how) because I am apparently on a cross-country road trip with a non-functioning gas gauge.

That being said, these days, the whole world seems to be out of alignment! Three plus months of quarantine are making many of us re-evaluate our priorities and causing us to question individual convenience vs. the greater good. Breonna Taylor, Ahmaud Arbery, Amy Cooper, Chief Allan Adam, George Floyd and more have shown us just how deeply the roots of white privilege run. All of us have become the frog in the boiling water when it comes to what we thought was “normal” back at the start of the year.

So while I try to figure out what “fine” actually does and does not feel like, hopefully the rest of the world can join me in recalibrating because clearly, we all have some work to do!

As a quick status update, I am happy to report that my most recent bone scan and CT are both showing no sign of progression, which means my treatment is doing exactly what it’s supposed to. However, my most recent bloodwork tells me I’m neutropenic again (fortunately this time without the mouth sores) so it’s 1 more week of rest before I start my next round of chemo. If you’d asked me how I felt this morning, I would have still said, “fine” so maybe I should just stop answering that particular question!

C is for Covid-19

Well, clearly my New Year’s resolution to write at least one post a month was a non-starter! Who knew when I wrote my last post that this was what was in store for 2020? That being said, Coronavirus started taking over my (work) life back in December. By mid-January, we had already started recalling students and from mid-February to late March, the pandemic had me working 12-16 hours a day, 7 days a week. Looking back, I’m still not quite sure how I managed, since I’m often exhausted after a typical 8-hour workday. Pretty sure I’m still paying for it (particularly since work is still surprisingly busy), but you do what you gotta do and adrenaline got me through. And then Covid came to Calgary and here we are!

We’re currently going on week 1,000,000 of working from home and it has been interesting to see how my experience actually differs from so many around me. For one, being immunocompromised, germaphobia was already part of my norm. Now, I’m not the only one looking suspiciously and trying to subtly inch away if someone coughs or sniffles. And I’m positively gleeful at the thought that handshakes might never make a comeback!

What really struck me, though, was that the palpable anxiety that hit so many people – an understandable result of so much uncertainty – seemed to bypass me altogether. We humans are not great with ambiguity. And add to that the inability to control much about this situation, and well, you actually get a small sense of what it’s like to live with metastatic cancer. Not to say that I enjoy uncertainty any more than the next person, and I’m the first to admit that I can be a bit of a control freak! But while many are being confronted with large scale precarity for the first time, this is what I’ve been living every day for the past year.

It was actually just around this time last year that I started to realize there might be something wrong. But I was so busy with work, I kept putting off going to the doctor (although it’s important to note that my procrastination had zero effect on the end result). Anxiety and uncertainty have been my daily companions ever since. So for me, this new situation, as strange as it is, is just more of the same for the most part.

That being said, living alone, the pandemic has made me feel even more isolated at times, and it sucks having to go to appointments and treatment by myself. And when someone I love dearly was very sick with Covid-19, I felt powerless because I couldn’t go out and help. I’m also resentful that this stupid virus is stealing time from however many good years I will have – time that I could (and would much rather) be spending with family and friends, or traveling, or hiking in the mountains, or one of a million other things.

However, this too shall pass and things will return to normal (or some form thereof). And that’s where my experience will differ once again. Because for many, the anxiety, uncertainty and loss of control will eventually be a distant, unpleasant memory. But I will still be living in the space between scans.

signs of spring – always good for the soul

New Year, New Post!

Well, according to a few people who have been dropping some not-so-subtle hints, it has been far too long since my last post (almost 3 months to be exact, so they probably have a point). Part of me just didn’t feel like talking/writing about things and the other part of me was just too tired after some very long days/weeks/months. However, since I didn’t send out Christmas letters this year (who am I kidding, I never send out Christmas letters), I figured some sort of update was in order.

The last time we chatted, I was in the midst of my 1st round of chemo and experiencing the daily delights of side effect roulette. At the time, I naively thought that my body would eventually settle on a few favourites and would leave the rest behind. Well, I am now just starting the 2nd week of my 4th round of chemo and one thing I have learned with certainty is that I can’t ever be certain how I’ll feel on any given day. Not only is every day a grab bag of random aches and pains, hot flashes, fatigue, etc., my past 2 rounds have had the added bonus of mouth sores, which have been a real treat. They do say that variety is the spice of life, but spice and mouth sores are not a great combination, so…

For those of you that are wondering, my chemo is pill based (daily, 3 weeks on, 1 week off*) and is paired with another pill treatment that I take daily (aka 4 weeks on, 0 weeks off) along with an injection that was initially monthly and has since switched to a 3 month dose (thank goodness, because it’s a doozy!). In addition, I go in for a bone building infusion treatment every 3 months.

*I should probably add that while my chemo cycle is supposed to be 3 weeks on, 1 week off, in 2 of my 3 previous rounds, I’ve had to take an extra “rest” week because my white blood cell counts were too low. As a result, they’ve lowered my chemo dose slightly for this 4th round in the hopes that it doesn’t wipe me out quite as much. Fingers crossed!

In November, I also had another set of scans done (both a bone scan and a CT) – my 2nd set but my 1st since starting treatment. My oncologist was fairly pleased with the results as they showed no active cancer growth and, in fact, a couple of my lymph node tumors have even shrunk slightly. So my treatment is working, which is great news!

However, great news is all relative. For me, better is a continuum, not a destination. I have often been asked how long my treatment will last. The answer to that is that it will last until it stops working. And then they’ll try something else until that stops working. And so on, and so on. As abnormal as it is, this is my new normal. And while 2019 didn’t quite turn out the way I expected (understatement of the century), here’s hoping 2020 has lots of good things in store for each and every one of us.

Almost 3K for Walking 5K!

A massive thank you to everyone who supported my 5km walk as part of today’s CIBC Run for the Cure. And by that, I don’t just mean those of you who stepped up financially (and believe me, I have been completely overwhelmed by your generosity). I have also been so moved by all of your encouraging messages and prayers. When I made the very last-minute decision to participate, I figured I’d maybe raise $300 if I was lucky. Well, you all proved me very wrong! Together we have raised almost $3,000 that will be specifically designated to fund metastatic breast cancer research and support.

It was a great day and I was so fortunate to be joined by my sister and brother-in-law and my nephews and niece (and, of course, the ever-energetic Nala, my dog-niece, if that’s a thing). They made the day both meaningful and fun. And with that, I will leave you with a few photos (with photo credits for most of them to Drew Myers and Carla Myers):

I’m Walking for the Cure!

Hello everyone,

It’s a bit of a last-minute thing but this Sunday, I will be walking in the CIBC Run for the Cure to help raise money for breast cancer research (emphasis on walking, I am definitely not a runner!). If anyone is interested in making a donation in my name, please feel free to donate online:
Visit my personal page

If you pay attention to the stats, you’ll know that 1 in 8 women are expected to develop breast cancer in their lifetime and more than 26,500 women and men are diagnosed every year in Canada. With your donation, the Canadian Cancer Society will be able to invest in breast cancer research as well as breast cancer information and support programs, all of which I have benefited from already.

I hope you’ll consider contributing what you can. Thank you in advance for your generosity.

Side Effect Roulette

It has been a while since my last post. As you know, I’m still working full time and while my job tends to be busy pretty much any time of year, September is particularly hectic. And, since I’m still more or less in denial mode when it comes to my condition, I figured I could push myself to work similar hours to what I put in pre-diagnosis. That meant that by the time I got home, I didn’t have much left in the way of blog-post-writing-energy.

That all came to a screeching halt on September 17, which happened to be both the day of my third treatment and the day of one of the more important meetings of my career. Having to go straight from a meeting with my oncologist to a meeting with Presidents and Vice-Presidents of various universities and research organizations was a little stressful to say the least. To make things even more fun, I went into my appointment thinking it was going to be round 3 of the treatment I’ve been on since July only to find out that, surprise, I was starting a form of chemo that day! As someone who likes to have a plan and know what to expect, this was yet another reminder that between me and cancer, I am not the one in control.

In addition to my brain having to adjust to the next phase of treatment being moved up (the original plan was for me to start this phase in mid-October), my body was (is?) not quite sure what to make of it either. It has been going through what I like to refer to as side effect roulette. In the almost 2 weeks that I have been on these new drugs, I have been cycling through just about every side effect on the warning label. It’s almost as if my body is trying them all on for size and hasn’t quite decided which ones to stick with. Nausea? Check! Fatigue? Double check! Muscle, bone and joint pain? Check, check, and check! Headaches, yup. Hot flashes, you betcha. Trouble sleeping? How does a full week of severe insomnia sound?! I’ll spare you the details on some of the others. It’s also supposed to mess with my white blood cell count and increase my risk of infection so there’s that to look forward to as well!

Fortunately some, like nausea and headaches, have come and gone (for now) and I’ve got other medications to help with the insomnia and the muscle and joint pain (yes, I feel like a walking pharmacy!). I still haven’t managed to crack the fatigue thing but at least I’m sleeping again and there’s always coffee!

Needless to say, I’ve let a few things slide in recent weeks, like gardening! I left it to Mother Nature to keep things watered and figured my flowers and veggies would have to fend for themselves against the weeds. My beans and peas weren’t very pleased with the neglect but apparently my zucchini enjoyed the independence as you can see from the photo below! Sadly, this particular specimen was stolen before I had the chance to figure out what to do with it.

Those of you in Calgary know that zucchini season is now officially over so I can now neglect my garden without any guilt. I’m also finding ways to work around my side effects, which means I’m back to putting in longer hours at work. Or which means (according to my counsellor) that I’m neglecting myself. So far, one of my side effects has not been improved work life balance, so I guess I still have something to work on.