73 days ago, I was officially diagnosed with cancer. 47 days ago, I was told it was metastatic. And 51 days ago, I slowly started telling people outside of my “inner circle” about what was going on. Some of those days have been better than others. However, it seems that whenever I have needed it most, I’ve received an encouraging text or email, a thoughtful card or letter, a surprise delivery of baked goods, or books, or crystals, or tea, or a meal, or one of a hundred other little acts of kindness from one of you!
The top of my piano is covered in cards, which serve as a daily visible reminder of all of the people out there thinking of and praying for me. And while I am infinitely grateful for each and every one of them, they are also evidence that, as Kate Bowler so aptly puts it in her amazing podcast, there’s no good card for that!
Be that as it may, I truly appreciate them all. So thank you, thank you, thank you! If you spend much time following the news today, it is very easy to come to the conclusion that people are the worst. However, all of you are simply the best and I wanted to take a moment to acknowledge that! I know that many of you are going through your own crappy stuff, which makes me appreciate your thoughtfulness even more.
In terms of updates, I’m almost 2/3 of the way through my initial treatment and am eagerly anticipating my next and final “sting of 1000 bees” in just over a week. After that, if all goes as planned, I should be moving on to the next phase of treatment (treatment 2.0?). I don’t have an actual timeline on that, but am guessing likely in late October. They’ve already scheduled my next bone scan and CT, but those won’t be until mid November.
In the meantime, I am looking forward to picking all of the beets and carrots in my garden and having another pickling extravaganza with my mom, hanging out with my nieces and nephews and hearing about their back to school adventures, and reliving my Downton Abbey obsession when the movie comes out in a couple of weeks.
Thanks again to all of you and big hugs to those of you going through your own things!!! This one is for you:
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.
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!
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.
I have spent the past 6 weeks taking all sorts of fun (and by fun, I mean not fun at all) tests: ultrasounds, mammograms, two different types of biopsies (spoiler alert – they both suck), a bone scan, a CT… and I’m not done yet. I’m still waiting on genetic testing.
Since a lot of these tests have involved drinking copious amounts of water beforehand (and, in one case, also drinking 3 giant glasses of contrast liquid) and then drinking even more water after to flush out whatever it was they injected into me for the test itself, I have never been more hydrated! So there’s that!
The culmination of all of these tests is tomorrow’s appointment with the medical oncologist where I will (hopefully) finally get specifics on my next steps. Once I finish processing what I expect will be a massive amount of information, I will keep you all updated. In the meantime, I will leave you with photos of me having a bone scan (by far, the least sucky of all of the tests), courtesy of my sister who was kind enough to keep me entertained throughout. Good thing I’m not claustrophobic!
Waiting in line, waiting at a red light, waiting for summer, waiting for your Starbucks order. Sometimes it feels like all we do is wait. However, waiting takes on a whole new dimension when you’re waiting to find out what’s wrong with you.
Waiting for the doctor’s appointment after finding the lump. Waiting for the phone to ring to tell you when and where your test will be. Waiting in the exam room in an ill-fitting gown that doesn’t close properly. Waiting while they call in the radiologist, which you know is not a good thing. Waiting for the diagnosis. Waiting for the myriad of appointments and tests and results that follow…
And if that isn’t bad enough, you have to hit pause on everything else as well. So much for planning a summer vacation. You wanted a new haircut? No point if you’re not going to have hair in a month (or is now the best time to experiment with bangs?!). What about that work trip you’re supposed to go on?
Unfortunately, finally having a diagnosis doesn’t stop the waiting. Now I’m waiting for treatment to start. Waiting until I’m ready to tell people. And still, like the rest of Calgary, waiting for summer to finally arrive! I wish I could say I was getting better at it. They say that practice makes perfect and I’ll certainly be getting a lot more practice waiting in the coming days and weeks and months. As long as it doesn’t come with elevator music, right?!
But while I wait, I will count my blessings: family and friends who go out of their way to distract me, bring me baked goods, and keep my mind off of my worries! Universal healthcare, new episodes of the Great British Baking Show, fresh veggies in my garden, non-fat extra hot lattes, nephews and nieces full of stories about summer camp… They do say that good things come to those that wait. Maybe it’s finally time to buy a lottery ticket!
So, one of the most exhausting things about having cancer so far (and there are many exhausting things about having cancer) is having to answer all of the questions that people have. To that end, please find the following handy resource guide to everything you want to know that I don’t have the energy to tell you:
I have bilateral invasive lobular breast cancer. And because having cancer in not one, but both breasts isn’t good enough, I have it in a lymph node as well. I have always been an overachiever!
What stage, you ask? Because that is typically everyone’s follow up question. Well guess what? They don’t tell you that until after a bunch more tests* and possibly not even until after surgery, so it might be a while before I can answer that question because:
My treatment plan* is chemo first, followed by surgery and then likely radiation and hormone therapy. Yes, they are throwing everything but the kitchen sink at me! Go big or go home, right?!
It’s going to be a long haul*. If we are talking 6 months of chemo, followed by 4 weeks recovery, followed by surgery, followed by 6 weeks recovery, followed by 3-4 weeks of radiation… well, that’s a lot!
Typically the next question is, “How are you doing?” Ummm, how do you think I’m doing?! Sometimes I’m in pain, sometimes my energy levels are super low, sometimes I’m stressed and anxious, sometimes I’m just fine.
What can I do?/How can I help?
Don’t just talk to me/ask me questions about cancer. Believe me, it’s on my mind enough without having to talk about it all the time. Feel free to let me know how much you think it sucks and if I want to talk more, I will. But otherwise, let’s talk about the weather, work, the trip you just took, my garden, the latest episode of the Bachelorette, what a great movie Yesterday was, climate change, politics, there are so many options!!! And it’s ok to talk about the crappy things in your life, too, but only if you feel like talking about them.
If you’re a praying person, pray! I’ll take all that I can get. Pray that I can sleep at night and that my anxiety and stress go away. Pray that the side effects of chemo are minimal so that I can keep living a relatively normal life, which includes still working (my choice so I really don’t care what you think). Pray that the chemo significantly reduces the size of my tumours and gets rid of the lymph node tumour entirely. Pray for my family and the close friends who form my main support network. This is happening to them too, which is stressful. And they are putting their own lives on hold to care for me.
If you feel the need to do things, stay tuned! There will definitely be lots of opportunity to do that. I hate to cook and will happily welcome any and all donations of meals and/or baked goods. Feel free to recommend podcasts or books to download. I know that as treatment progresses, I will need people to hang out with or to run errands for me, etc. My amazing sister, Carla, will be your go-to for all of that so watch this space.
*Edited to add that, in light of my updated diagnosis, the course and length of treatment is now completely different, so feel free to ignore those bits, or see them as a record of what is now what I wish were happening.
C is for Colleen. C is for Calgary, where I live and the university where I work. C is for coffee, which makes everything better. C is for countries (I have traveled to more than 50 so far). C is for carrots (and all of the other things I like to grow in my garden). C is for children (specifically my 9 nieces and nephews whom I love more than anything). C is for cynical (as in my sense of humour). C is for climbing around in the mountains (well, hiking really, but it was the only c-word I could find). C is for Christian (although C is definitely NOT for conservative, either politically or as relates to my beliefs – love is love!). C is for chocolate and chips and cupcakes, the most important of food groups. C is for creative, curious, clever, and courageous.
And C is also for cancer, which is why I’m writing this blog. And while this is the place where family and friends can come for updates and bad cancer jokes and irreverent reflections on my diagnosis and treatment, you may also be subject to posts about my garden, the weather and other random thoughts on life. Because talking about cancer all day is both boring and depressing and I am more than my diagnosis.
And with that, I will leave you with today’s inspirational quote:
C is for cookie. That’s good enough for me – Cookie Monster
C is for Colleen 