update – C is for Colleen

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!

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.

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.

Sliding Doors, Bee Stings and a Parking Rant

It has been a while since I last wrote, in part because I didn’t have much in the way of updates and, in part, because even almost one month on, I’m still trying to wrap my head around things and I don’t seem to be any closer to that than when I wrote my last post. Some of you might remember the 1998 Gwyneth Paltrow movie, Sliding Doors, in which her character’s life follows two very different paths, all based on whether or not she made it through the sliding door of the subway car. That’s perhaps the best way to explain what this summer, and in particular this past month has been like, with two different versions of my life spooling out in front of me (one with “normal life” and one with a much more surreal, not so normal life), neither of which feels like it’s actually happening to me.

However, in real life, I still have metastatic cancer and today was my second “systemic treatment” appointment, meaning a check in with the doctor and my second monthly injection of Leuprolide. If you’ve ever wondered what it feels like to be stung by 1,000 bees, all in the same spot… Well, I’ll leave that to your imagination. Of course, I am well aware that it could be (and probably will be) far, far worse and the stinging doesn’t last forever, but clearly that’s not going to stop me from whining about it a little bit anyway. As for actual updates:

I’m doing ok.
I’m tired pretty much all of the time (given that fatigue is a side effect of having cancer, a side effect of my treatment, and a side effect of stress, this was more or less guaranteed). Sometimes it’s manageable, sometimes every ounce of energy I have just disappears and no amount of latte consumption can help. But I’m doing ok.
I have some sort of ache or pain pretty much all of the time. Again, sometimes it’s manageable, other times, less so. My right elbow is almost always stiff and sore and, for some reason, the vast majority of my other aches and pains are also on my right side (wrist, knee, hand, etc.). But I’m still not having bone pain in the places I have metastases so I’m doing ok.
Mentally and emotionally, I have good days and I have bad days. Thankfully, that’s what family and friends and therapy and prayer and anti-anxiety meds and coffee and potato chips and gummy candies and home made pie and fresh produce from my garden are for. So I’m doing ok.
I had to cancel a planned work trip in September, which would have added another country to my list (Finland) and given me the opportunity to hang out with some great friends and colleagues, so that’s a bummer, but there are worse things, so I’ll be ok.

My treatment plan remains the same for now. They may move the next phase up depending on how I respond to my current treatment in the coming month but for now, we carry on.

Some lessons we are learning as we navigate our way through the system:
1) if you’re going to get cancer, it’s probably best not to get it in the summer. Everyone is on vacation and things just generally take longer. Not to mention, it puts a real damper on your own summer vacation plans and is going to make for some very awkward “how was your summer?” conversations.
2) no matter how much of a buffer you add when you pay for parking at your appointment, double it and it still won’t be enough. One of the great mysteries of my cancer experience so far is how the parking payment systems at medical facilities expect you to know how much time you’ll need in advance. You have no control over how late the doctor may be running or how much extra time they will need to spend with you. It’s not like you can rush out and add money to the meter in the middle of your appointment, after all. Some day, I’m sure we’ll master this part. In the meantime, we’ll just pray we don’t get too many tickets.

And now, because posts are better with a photo, I will leave you with a shot of some ice at a lagoon from my trip to Iceland in 2017 because it was a very surreal place, which seems in keeping with my surreal life.

My Secret Identity

I have always been a private person, which I’m sure is surprising to absolutely nobody! One of my superpowers is being able to give very general and vague answers to personal questions and then turn just about any conversation to someone or something else so that I don’t have to talk about myself. That has become much more difficult in my current situation.

The question of who to tell and when has been something I’ve struggled with from the moment I first suspected something was wrong. In part, I think it’s because cancer has a way of ripping all sense of control right out of your hands. So you try to hold onto whatever small shreds you have left, such as attempting to manage who knows what. The other challenge is that every time you say it out loud, it becomes more and more real.

Initially, I didn’t want to tell anyone outside my “inner circle” of immediate family and a few close friends because dropping the “I have cancer” bomb tends to come with a lot of follow up questions, none of which I was able to answer at the time. My plan was to wait until I had all of the answers and then start sharing the news more widely. After all, at some point it was going to be a lot harder to hide and I thought that moment was rapidly approaching.

After receiving my initial diagnosis and treatment plan, I felt ready to broaden the circle a bit, reaching out to extended family and my team at work (who I presumed were starting to wonder why I kept disappearing when I took off for appointments and tests). I figured that after my oncologist appointment, which was supposed to confirm my initial diagnosis and treatment plan, I was going to go public.

Well, as you know, that’s not quite how it played out. Now I’m undergoing treatment that currently has no visible side effects. My hair is staying put (for now). Surgery is not in the plan. My only major changes in weight will likely be a result of all of the extra chips, ice cream and baked goods I’m eating. Not that I don’t have side effects. It’s just that they’re easy to hide.

So I am now living a double life, in which some people are aware of my secret identity but many more are not. Friends who don’t know ask me how I’m doing and I make up some innocuous answer and talk about the weather. Work colleagues ask if I have any plans for summer vacation and I mumble a reply about work being too busy for time off right now and quickly change the subject. Come to think about it, I’m actually living a triple life because there is a whole set of people (i.e. my team at work) that know I have cancer but aren’t aware of my actual diagnosis.

And if I wanted to, I could probably keep this charade going for months, maybe even longer. Now that I don’t have to tell people, I keep going back and forth on whether I actually want to tell people. It’s kind of nice to pretend to be normal; to have a bunch of people who think you’re the same as you have always been. It’s also much harder to explain now, since my prognosis and treatment don’t fit with most people’s mental image of the typical cancer journey and explaining is exhausting!

I guess for now, I will decide not to decide. I’ll ration out the telling, as I have the desire and the energy. Enough people know that I can’t really control whether or not word gets out but I’m not planning on renting out a billboard or making a giant Facebook announcement anytime soon. So here’s to living a double life!

Also, for those of you wondering how I’m doing, I’m doing as well as can be expected. I’m almost done week two of treatment and so far, the side effects are manageable. I’m seeing a counsellor to help me process everything (her practice focuses on people with breast cancer, so she knows all of the ins and outs of the medical side as well). My family and friends have been absolutely incredible and words can’t express how grateful I am for their ongoing support. I’m going for lots of walks in the sunshine because moving helps with my side effects. I got my hair done because it looks like it will be around a while longer (although I’m still too chicken to try bangs). And my garden is giving me all of the delicious, fresh peas that my heart could desire!

Sorry, it’s a long one…

So, this isn’t the post that I thought I was going to write. The post I was going to write was going to be a perky update about prepping for my first chemo treatment with a few well-placed jokes about IVs, puking and/or hair loss (I hadn’t really figured those out yet). But then came Wednesday.

You know when you think that the worst has already happened? Well, not like treatment was going to be a walk in the park, but believe me, getting diagnosed with cancer is pretty sucky. Well, that wasn’t the worst. Little did I realize, but the week before, my sister captured the moment my life was about to change… again.

It was this bone scan that showed pretty much every bone from my chest to my pelvis all lit up like a Christmas tree. Just FYI, they aren’t supposed to do that. The CT later confirmed what the bone scan indicated: my cancer has metastasized to my bones, and not just a little bit. I’ve seen the scans. My bones look like they have chicken pox! Now I know why the techs from both tests kept asking if I had any bone pain. For the record, I don’t. More on that later.

So what does that mean? That means that I don’t just have breast cancer, I officially have metastatic breast cancer (aka Stage 4, aka incurable) and that changes everything. Here are a few things to know about metastatic breast cancer, because most people don’t know much about it. Consider it your science lesson for the day:

About 6% of people are Stage 4 from their initial diagnosis. So yeah.
In my case, the cancer has spread (metastasized) to my bones. However, I do not have bone cancer. Having bone metastasis is not the same thing as bone cancer as the cancer cells in the bone still look and act the same as breast cancer cells. Silver lining: it hasn’t spread elsewhere. Just my bones.
With metastatic breast cancer, the goal of treatment is not to “cure” the cancer as that is no longer possible. I will have cancer (and be in treatment) for the rest of my life.
The goal of my treatment now is to shrink or weaken the cancer, manage my symptoms and side effects, and prevent the cancer from spreading further. Treatments will change over time as the cancer adapts to, and stops responding to therapies. It is hard to predict how long a specific treatment will work in any person. Some will work for many years while others will need to be changed more often.
My specific cancer’s subtype is called “hormone receptor positive”, which means that I have cancer cells that grow in response to certain hormones. That is why they are treating me with what is called “hormone therapy”.
I have already started treatment (they started me on treatment before I even walked out of my appointment on Wednesday). I am currently on two different hormonal therapies: leuprolide (a once monthly injection) and tamoxifen (a daily pill).
The current plan is that after 3 months of this treatment, I will then switch to what is called a “targeted chemotherapy” called palbociclib, which is apparently the latest and greatest in treatments for my type of cancer. The side effects of palbociclib look a lot like the side effects of regular chemo (so it looks like I may still get to lose my hair and puke a lot), but while hormone therapies, targeted therapies and chemotherapy are all “systemic” therapies (meaning they all travel through the bloodstream and treat the whole body), palbociclib targeted therapy is not the same “atom bomb” that IV chemo is. I might still have that pleasure later on.

What nobody can figure out, however, (including my oncologist) is why I don’t have more symptoms. The symptoms for bone metastases include strong, unexplained aches and pains, compression of the spine (causing numbness in my arms or legs), or even a bone break or fracture. I’ve had none of these! In fact, I’m actually taller than I thought I was (only by 1/2 an inch, but still, that counts when you’re my height!). I am choosing to take the lack of symptoms as a good sign – of what, I don’t know, but a silver lining nonetheless.

I am still trying to wrap my brain around all of this. My family and I were more or less ready to go through an awful year, knowing that then it would be done. But it won’t be done. My oncologist equated it to having a chronic disease like diabetes or heart disease. I will never not have cancer. I don’t get to be one of the people in the ads with all of the cancer success stories – the victor, who fought cancer and won. Most people won’t get it because I won’t follow the traditional path of other cancer patients (chemo, surgery, radiation) and, depending on the treatment, I may not even look like I’m in treatment. But I will be in treatment and having tests and scans and anxiously waiting for results forever.

It has taken me a while to even write about this and I’m not quite ready for talking yet, so at this point, I would politely request no follow up questions and, if we’re hanging out, if we can talk about anything BUT cancer, that would be great. For those of you that pray, however, please do!!! So far, the side effects of my treatment have been minimal. Hopefully they will stay that way! But this is still a lot…

So hug your friends and family today. Thanks for listening.