Two years ago today, on Friday, August 31, 2018 at around 11:30am I found out that what they initially thought was a stage II diagnosis, was actually stage IV.
That all of the scans I'd just completed over the last month showed that the cancer had metastasized to my liver.
I remember my oncologist coming into the exam room, and not really looking me in the eye.
It’s incredible though, how your mind works in situations like these, because it didn’t register as anything that I should be concerned about. Even though I was there to get the results from a months worth of tests, scans and bloodwork, denial is a powerful powerful thing.
Instead I proceeded to make light banter with him ... until I finally realized that he wasn’t making eye contact. And that his face was fixed on the folder in his hand.
At that point I just stopped talking. And he took his window.
He told me that the results weren’t at all what they had expected. And he just looked so fuckin’ sad that I knew right away it was bad. Like really bad.
Finding out that you have cancer is a gut punch. However, finding out that you have stage IV terminal, incura and inoperable breast cancer, just one month after finding out that you even have cancer at all, is a whole other ballgame.
It’s the only time in my life that I literally felt the air get sucked out of a room.
It just doesn’t feel real. It’s like your whole entire being just goes numb. Almost an out of body experience.
And then you run the whole gamut of emotions. Shock, sad, scared, denial, deal making, defeat. And you run through those at about 100 miles a minute, on repeat.
The thoughts and emotions come and go so fast that you can’t keep up. And all of these questions come flooding in, but you can’t spit them out.
It feels like the end of the world ... LITERALLY!
But I’m here, two years later, to tell you that it’s not the end of the world.
For many of us, there is life after a stage 4 cancer diagnosis.
A LOT OF LIFE!
Cancer (and fatigue) aside, I’m still regular ole Alison.
I can still do everything now, that I did before cancer, chemo, and continued immunotherapy — only slower (sometimes), and with a few more naps!
I count my lucky stars every day that I’ve tolerated and continue to respond to treatment the way I have. It’s not lost on me that it could have gone in a much different direction.
But it didn’t!!
And I understand that there are a lot of people out there who haven’t had as easy a run as I have thus far. And my heart aches and breaks for all of them and their families.
The one thing I’m so thankful that I allowed myself, after hearing the news, was a poor woe is me weekend.
A pity party, if you will.
The first thing that I did when I got home was call my mom, my dad and my brother to tell each of them. I didn’t want to, and I certainly didn’t feel like it, but I knew I had to. I told them what I could without losing it, and then asked that they give me some time and space to process.
And from there I put on my pyjama’s, I laid on my couch and I slept, cried, watched mindless tv, cried some more, slept some more, and processed ... for three whole days. I got up to go to the bathroom and to refill my water bottle, but that was it.
I’d had some “moments” in the month prior too, since finding out that I had cancer ... but I hadn’t allowed myself to fully let go. To fully feel and be consumed by these terrifying emotions.
But that stage IV bomb provided me that courtesy.
And while it didn’t take away how scared I was, it was a necessary process. I don’t know that I would have started this fight with the mindset that I did, had I not allowed myself those days to grieve.
I didn’t recognize, at the time, what a favor I was doing for myself. But I sure do now!
Unfortunately, just one day after I had picked myself up and dusted myself off from that weekend, I had one more grenade dropped in my lap.
The dictation from my appointment was posted to my online portal. And in that report, Dr W (my oncologist) noted; “I have reviewed the CT scans and unfortunately, the CT abdomen shows more than 20 liver metastases.“
I’m pretty sure he made a judgment call during our meeting by omitting that detail. And rightfully so, as I was in a fair amount of shock. Metastatic cancer is metastatic cancer, regardless of how many metastasizes there are. So that detail was not something I needed on that specific day, on top of everything else.
But man oh man, did reading that sentence in that report ever do a number on me. I spiralled HARD from that one. And I had my first ever panic attack.
I was hyperventilating, the room was spinning, my entire body was shaking, and I could not stop frantically pacing around my living room. I thought I was gonna die - literally and figuratively.
Thankfully I had the sense to call my amazing friend Elisa, and she was able to tell me I was having an anxiety attack. She told me to to sit down, lean forward, and take slow deep breaths - and eventually it subsided and I could breath again.
She then gave me one of the best tips I’d been given so far —— call your doctor and get an Ativan script!
While I’ve not had anxiety even close to that, since that day, I’ve had bits and bobs here and there. So having that script on hand has helped.
Something else that has helped is NOT giving energy to the worst case scenarios. And NOT paying attention to the statistics on things like life expectancy, or how long the drugs are likely to work. I don’t need to know what some years (and sometimes decades) old study has shown. Or even a more recent study, that doesn’t tell us if any of the subjects made any sort of lifestyle changes like I have.
Dr W did mention early on what my approximate life expectancy was likely to be. And after hearing this from him three or four times, I mentioned (respectfully) that this wasn’t something I needed to be reminded of every three weeks when I saw him. And bless him, he never mentioned it again!
I’ve seen and heard and read about too many people beating the odds. And while I don’t live in some alternate reality where I don’t comprehend what the possibilities could be, I’m simply choosing to believe that I’ll fall under the “she beat the odds” category!
With all of that being said however, there is a lot more that needs to be done in the way of metastatic breast cancer (MBC) research and awareness. Like A LOT MORE!
Here are a few stats that I DO pay attention to. And that more people should be aware of.
"MBC focused research made up only 7% of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom." and "Only 5 Percent of Cancer Research Funds Are Spent On Metastases, Yet It Kills 90 Percent of All Cancer Patients." [source]
“In the United States, someone dies from breast cancer every 14 minutes. This number has not decreased significantly in nearly 40 years despite a huge movement to raise awareness and funds for breast cancer research. Just wearing, buying, or even walking for "pink" does not reduce deaths from breast cancer. Scientists know that research specifically focused on metastasis is crucial to significantly reduce the breast cancer mortality rate. Metastasis research is challenging for various reasons. However, the biggest obstacle is lack of funding: only an estimated 2-5% of the funds raised for breast cancer research is spent on studies of metastasis.” [source]
And, if you're looking to help change this, RETHINK Breast Cancer has created a great campaign called the MBC Ally Movement, with the goal of doubling the overall survival rate for MBC patients by 2025 - and they are almost halfway to their goal of 10,000 pledges.
RETHINK is a Canadian organization that provides incredible resources for young women with breast cancer. And they are a huge advocate for raising funds and awareness for the metastatic breast cancer community.
So, if you've got a minute or two, could you please pledge to be an ally. MY ALLY! I promise, it won't cost you anything but a few moments of your time.
p.s. READ HERE for my post from August 31, 2018.