The Life I Didn't Expect: January 2020

Here we are into another year. Here’s a little recap and update of this past year. With my memory I tried to cram everything I could remember so it’s truly a recap of all I could remember, lol.

This year was a bit more of a shit-show-what-the-hell-happened from literally January 1^st type of a year. Hubby was in emerg on New Years day, then back two days later, then surgery in there to fix his back, then complications from surgery, another ER visit, more surgery, an ambulance ride to cap off his birthday because you know we like to party hard with lights and sirens (NOT). Then in the midst of all these “wonderful” ER visits I caught the spawn of satins awful respiratory illness which then led to a rib fracture. So that was the first quarter of the year, lol. After all that, we were ready to try and find some enjoyment but then my sternum decided to light up more indicating the cancer was becoming unruly again and I mean why not add more shit to the already exhaustingly shitty year we were having. Throw in some targeted radiation to my sternum (SBRT), exhaustion that accompanied it and we were ready for some good ole times. Just as a public service announcement to the peeps who have never had radiation: Don’t assume we are simply “tired” or lazy. NO. It is a very overwhelming type of exhaustion. Sleep does not rectify the exhaustion. Unless you have experienced radiation please don’t assume we are simply sleepy. That’s easy to deal with, just sleep and you’re good, lol. Radiation fatigue is an annoyingly overwhelming feeling. Anyhoo, Scans that came after rads were amazing with reduced activity to my sternum and nothing in my brain and we were finally headed in the right direction!! After these scans we decided to move imaging from every 3mo to every 4mo. I have had brain MRIs and PET scans consistently now every 3mo for over 5yrs. I’ve stated numerously the stress they create and how truly unimaginably difficult they are, so knowing things were headed in the right direction made me feel ready and more than happy to push scans back by a month. I finally felt like we could focus more on the living part and less on the illness part that can be so damn all encompassing. I felt like we could plan a little more and dare I say, think less about cancer?

Somewhere in the shit show of life I also went to Toronto for our annual Rethink MBC advisory board meeting in February as well as heading back in June to attend the Canadian Breast Cancer Symposium. This was the first time they had patient advocates at this conference, something I hope is on the cusp of change. Patients are the most invested in research and I think a patient stream should become a regular event at these national conferences. It was a wonderful experience. As well, I was lucky to take part in Stretch Heal Grow in Emerald Lake later in the year and got to meet some amazing women affected by breast cancer. Amongst all the craziness of life there were also moments of pure joy: my youngest nephew’s first birthday, and a week in BC with family over the summer. I don’t ever want to forget the moments that fuel my soul even amidst some hard times because we all must grab onto something to keep us afloat during those, what feels like never-ending moments of hardship. For myself, I need to hope and think of what’s yet to come even if that means only being able to plan a few months in advance. And sometimes due to the side effects of Xeloda, it may simply mean planning for that day and recognizing that tomorrow will be better.

Throughout the craziness of the year, I made the difficult decision to step down from co-chairing Rethink’s MBC advisory board. After 1.5yrs, between the travel and the commitment and the realization that I could no longer give 100% of myself to this board, I decided to step down. I felt torn in a sense like I needed to advocate, to try and make things better for our community. Advocacy forced me to constantly think about cancer and after 5yrs of immersing myself in this I think I knew deep down that it was finally time to take a step back and focus on my own life and my own health. To not have any additional stress and to not fill my days simply thinking about cancer. The moment I stepped down I felt like this weight was lifted off my shoulders. I truly made the best decision for me and my family and It made me realize that saying no is sometimes a necessity and we should never feel bad for putting ourselves first. Ever.

Fast forward to the end of the year, I had my last scans and posted about my good results! Heck, I posted a stupid boomerang with the hubs about how happy we both were. We celebrated, had my fave annual chestnut praline latte and went out for dinner. The next day I bought myself a pair of shoes I loved because I mean…why not? Remember, ALWAYS buy the shoes😉…and the purse…ok, just buy whatever your heart desires. As well, the SBRT (targeted radiation) I had earlier this year showed that there was continued decrease in metabolic activity to my sternum. Could I seriously end the year on a better note?? I truly felt like our luck was finally shifting and I really felt like life had hit a sweet spot.

The next day as I was sitting enjoying another chestnut praline latte (I was really happy about my scan results & life in general at this point), I got a call from my oncologist noting that the actual radiologist report was received and unfortunately there was something concerning noted on my brain MRI. First thing I thought was fuck NOOOOOO, not my damn brain…again!!! The pickily situation was the fact that this spot was noted just adjacent to an area I had radiated in 2014, and so there was some confusion about whether it was cancer progression or radiation necrosis. Radiation necrosis is basically a type of radiation injury which causes the loss of blood supply to an area, and essentially that area starts to become necrotic, or in other words the area dies. I suppose the “good” news is that it is still tiny (mm’s in size) but damn, why did it need to pop up in my brain☹. I could deal with a tiny new spot to a bone but the thing with the brain is that it’s contained within the skull so things can’t grow and flourish in there without causing significant issues. I kept this info on the downlow as I didn’t know myself what the heck was happening and I’ve found having people ask questions when I don’t have the answers simply causes me more stress.

The scans were further reviewed by both my neuro radiation onc along with the rest of the radiation team and they came back stating that they believed it was indeed radiation necrosis. Yay-ish (??), but not really. I know as soon as everyone hears that it is anything other than cancer it’s this huge relief, but it’s not really the greatest thing either. On imaging, a radiologist can’t decipher between necrosis or cancer as they look basically the same and they can both continue to grow and essentially cause detrimental issues within the brain. It can also cause symptoms identical to cancer so essentially, it’s kinda like the asshole friend of cancer – both are like the shittiest gifts that keep on giving.

With that, I went away to Cabo with my mom for one week because I just needed a break. Hubby was a gem as we wanted to get away but told me he would hold down the fort with the dogs and to just get away with my mom as I had the opportunity which I was beyond thankful for. There’s something about the ocean that literally draws me in and allows me to simply be. Maybe it’s because the waves in Cabo are unpredictable so I’m too focused on not being swept away into the Pacific, lol, but there’s nothing more perfect then to sit and be by the ocean all day. To relax away from any stress that occupies my mind with the everyday life back home. We ate a LOT, ate anything and everything I felt like having, enjoyed a glass of wine with zero guilt with dinner and was just simply so damn thankful that I could still travel and enjoy it.

This year I learned that regardless of how hard we try to plan for anything they are exactly that; simply plans with no guarantees. I’m thankful my hubby’s back is finally fixed. I’m grateful for another year, and I’m thankful that all those I love have their health. Now moving forward, I am back to imaging every 3mo and we will watch this area of necrosis. If I become symptomatic then we will deal with it. Typically, they start with steroids so here’s hoping things remain chill as the last thing I want is to go into 2020 needing steroids which I utterly can’t stand. Oh life you keep me on my toes. Obviously, I know how much worse it could be – trust me, I watch far too many beautiful people suffer and die from this disease but I won’t pretend as if my life is all sunshine and roses all the time either. I first heard I had cancer when I was 26, came back with a vengeance when I was 28 and have been living on some form of toxic therapy ever since. I simply want more research and better therapies that not only extend our lives but give us a better quality as well. Here’s to another year…I want nothing more then to be happy…to feel physically well & not wake up at night feeling awful…less drama…more sunshine and oceans and family. Cheers everyone and hope 2020 is a good one😊

This is just a fraction of treatments from 2019, but all these moments were worth it for the moments below

Canadian Breast Cancer Symposium with some amazing advocates

This boy turned ONE:). Oh gosh I love his squishiness and basically everything about this sweet little dude. Can't help but smile when I'm around him:)

This is the mould from SBRT. Told the hubs that pretty soon I'll have a full body worth of this...so far I've got a head, neck, and chest, lol. Truthfully though, THIS IS ENOUGH! However, I'm thankful SBRT was even available as a treatment option for me

Vacationing with this little dude who is like a retired, old soul. He truly is one of the sweetest boys you'll ever meet and I simply hope his massive heart and empathetic soul stays with him forever