Tuesday 15 September 2020

Pandemic. Progression. Perspective

2020 where has it gone? Oh right we are still circling the drain with this one. I think as a collective society this year is one where you just look back and go WTF just happened? I think I said the same thing about last year actually, lol. I feel like I stepped in shit and can’t get it off my shoes...that’s a fair way to sum up this year. This shit is stuck to us and we can’t escape it. I feel as though as I am living in a circus watching as decision makers use us as puppets, as literally everything has become politicized. Cue vomit emoji & plead for common sense and understanding.

 

For months I have written, saved, deleted, written, forgotten, and then just got stuck. At the start of the pandemic and everything else that has happened since, everything became ‘judgy’ and if you didn’t do X,Y, Z  then you were…you guessed it…judged. I lost a bit of desire to even write because of it. Yet, then I wondered WHY do I even care? I never cared in the past so why do I care now? I mean, seriously and truly, we can all have differing views on everything but we don’t need to go down people’s throats disagreeing with them, their beliefs, and how they choose to deal with everything that all started with ONE person eating a bat???? I’ve often wondered what it would be like to be patient zero – in fact, I’ve thought about this a lot once I’ve consumed my medicinals late in the evenings, lol.  ALL this shit due to a damn BAT??!! I never was a fan of bats but now I utterly hate them. I’m sure “Bob the bat” never thought he would change the living world as we know it… should have been the year of the bat.

 

Now we are into the part of the year where we have stopped hoarding mass amounts of toilet paper, hand sanitizer, or craft supplies, and into the part where everyone has a differing opinion on everything and suddenly every living creature has an expert opinion on this pandemic! We have a mass amount of graduates this year from Dr. Google PhD. Not sure when they graduated but they are ready to give their “expert” opinions in a hot minute. Then you provide scientific facts and their amazing counter argument is: agree to disagree…ummm…ok, but science is science. Sometimes I wonder WTF is happening to the world in which we live? Common sense is as rampant as…well…it’s not rampant and that’s the problem. Common sense has sailed away…likely on that Princess Cruise line. For those of us living with advanced cancer I’ll tell you the worst has happened. We are living on a timer as is, doing therapies that are toxic AF, but we do it because we want to LIVE. Let me give a little perspective on how this pandemic impacted me, and many others with cancer…

 

This pandemic put a serious pickle jam into my plans. I know I know everyone will say: “no shit Sherlock do you know how it impacted me?” Yes, yes I know. HOWEVS, for many advanced cancer patients, this halt in everything may have been what ended their lives. This disease is always about treading water and simply trying to stay afloat before the next wave hits you. The hardest part of this pandemic for me was watching as the world shifted to COVID research and cancer research took a massive backseat. Many clinical trials stopped enrolling patients and, in turn as a result, many succumbed to the disease. THIS has been the hardest part of the pandemic for me. The isolation that many with advanced cancer already feel became heightened and worse. For some, they planned their bucket list vacations, only to lose not only a substantial amount of money but also the very last opportunity they had to take a trip. Ever again. You see, for many, the pandemic was simply the last roadblock to living that sealed their fate towards death. This pandemic was never about “The Pandemic” for many of us.

 

For those that have died, there were no funeral services. Some died alone. Nobody there to hold their hand. The death of a respected and amazing young mom just the other day was my tipping point. HOW can we possibly allow anyone to die alone? HOW? I can’t find the words to express my anger and disbelief that this was allowed to even occur. Families never got closure for their loved ones death. Allowing a young child to see his mother before death is not closure. It’s TRAUMA that he will need to live with for the rest of his life and there is nothing even remotely ok about this. Yet, it was done and it’s over. It’s not televised because it does not fit the mainstream media’s narrative which is all about politics and COVID – Selfish and self promotional. That’s it. Those that have suffered unimaginable loss had their grief contained to the four walls of their home because people couldn’t gather to offer support. Let that sink in. I know we can quantify the number of deaths from COVID, but what if you could quantify the psychological distress that we have created? We have mentally tormented many and left them spiraling in grief. But, we gotta keep people safe from COVID? Our reality is distorted and people are suffering immensely as a result.  

 

Don’t get me wrong, I fully understand the magnitude of this virus, but at this point I’m left to wonder about the real toll this pandemic has taken on all of us. Cancer screening took a hit and I can’t help but wonder the death rate we created because our world took a hard stall and froze to delve into everything COVID related. I can’t help but wonder why cancer research never felt as urgent as COVID research? “It’s so we don’t overwhelm the healthcare system/the hospitals” they said. OK. They placed a temporary tent-like structure to deal with the influx of COVID patients at one of the hospitals in our city. It has since been dismantled as it wasn’t even used. However, we are building a massive cancer centre that is as big as a large hospital because cancer cases are through the roof and we have completely outgrown our current centre…we outgrew it many, many years ago (I mean like over 20yrs ago). Unfortunately, I feel more so that as a society, we have reached such complacency that we just feel we have some form of control over developing cancer. That’s about the biggest myth out there or is it because it isn’t contagious that people live in a delusional state of assumption that it can’t happen to them? When stats show almost 50% of the population will get cancer at some point in their life, I would think the urgency would be greater. When I see the daily count of people who got COVID in our province I can’t help but think, why dont you show the picture of every child diagnosed with cancer? You want perspective? In our province, according to the Canadian Cancer Society & the Gov’t of Canada stats, in 2019 alone, approximately 19 people died of cancer. EVERY. SINGLE. DAY. If you look at the most populated province of Ontario, the cancer deaths are approximately 81 DEATHS. EVERY. SINGLE. DAY. Nobody cares. It’s a complacency I truly hope people wake up from before they become a part of this statistic.

 

During the height of the pandemic I had scans. I went alone as the hospital didn’t allow visitors. I have been on the same oral chemotherapy now for almost 5yrs and really had no reason to think anything would be any different. I went to my scan results alone because, again, they didn’t allow visitors, but if you were celebrating the happiest day of your life by giving birth you could still take your partner. Hmmm…really? So happy times are exempt from this highly infectious virus? Those in the depths of hell, so sick from treatments and the disease ravishing their bodies, need to do it alone? WOW. That was the biggest disservice we could have ever done. Inhumane really. Loved ones sitting alone in their cars in the cancer centre parking lot waiting for their loved one to come out. Cancer is the pandemic of lowest priority. And then I heard the words that my current treatment was no longer working. Say whaaaat???!!! The SBRT I did to my sternum one year prior did not work the way we had hoped. Apparently, this happens to less than 5% of people…oh how I fucken love numbers…and cancer… and all the shitty stats one falls under. Truthfully, the ONLY good thing to come of this pandemic has been the free parking at the hospital. That’s about it. Correction: They are now charging for parking again, lol. Not sure why they think touching these machines when flu season is around the corner is the way to go but welcome to our profit driven world and NO, not a dime you pay for parking goes into our healthcare system. Moving forward, treatment-wise, I decided to go on T-DM1/Kadcyla (drug conjugate which binds Herceptin to a potent chemo called Emtansine). Side effects and all the deets on this therapy I’ll discuss in another post otherwise this one will keep on going and that’s not the purpose of this post.

 

This year has been hard as I am sure it has been for many. I’ve found some who use the pandemic as an excuse for everything, whilst I have never really been scared of this virus. I do all the things that they recommend – wearing a mask, hand washing, social distancing, etc… I have already heard the worst news one can hear and I choose to live my life with perspective. Perspective that I literally have not known one person, personally, who died of COVID, but innumerable number of friends who have died from cancer. Sometimes on a weekly basis. And sometimes so unexpectedly that I can’t quite grasp how or why…or if this will ever get better? Perspective that the couple people I did know recovered from COVID with no lingering consequences, and yet those living with stage IV cancer are still on some form of therapy for the rest of their lives, whilst remaining isolated even further. I think perspective can help us see that there has always been a horrible pandemic that has inflicted our society for millions of years and that’s called cancer. We are dropping like flies over here, but our biggest concerns have been reopening bars and strip clubs and then we panic when 4 more people have been diagnosed and we hurriedly go into panic mode? Here’s a thought, bars and strip clubs are somehow essential but the future generation’s education is not? Is this seriously the fu*^ed-up world we live in? If we aren’t worried about children’s mental health and the detrimental impact we have created by having an overly media obsessed frenzy over everything COVID COVID COVID, then God help us all. Perspective needs to be placed on COVID screening and the impact that has. YES, when we test 6,455 people in a 24hr period and have 7 new cases, why is this even on the news? I would hope basic math is something we can still do and hasn’t been lost in the hysteria of “breaking news headlines”. That is less than 1% of that population. LESS THAN ONE PERCENT. Hey, here’s a nice lil comparison: If we were to tell everyone in our province to have some form of cancer screening tomorrow, do you know what would likely happen? We would see a large increase in cancer cases. SHOCKING!! Ya, not so much. We can instill fear by talking about new cases or you can switch perspective by giving out the percentage of people who have recovered. You know that whole glass half full or empty shit?

 

We all balance and assume risks - Every. Single. Day. When we get in our cars and drive somewhere – we assume risk. When we go for a walk – we assume an element of risk. Right now, I feel we have disproportionally balanced risk over benefit and the toll this will have will be far worse than what the media is reporting in regards to COVID deaths. We need to see that this isn’t only an issue that equates to ONE cause. This is simply what is above the surface. It’s what lays below that we are ignoring that is the REAL problem and we need to start to open our own eyes. People not seeking medical attention in a timely manner for cardiac issues, cancer screening, & the toll on mental health which I feel is horrifying and will far outlive this COVID pandemic. According to the NCI, cancer remains one of the leading causes of death worldwide. In 2012 alone, 8.2 MILLION people died of cancer worldwide. 8.2 MILLION in ONE YEAR. Oh, and according to the World Health Organization in 2018, 9.6 MILLION died of cancer globally. You see how much that number is increasing??? This number continues to increase and cancer has been around for MILLIONS of years, yet we have normalized it. It has become a disease where people give off the cuff remarks as soon as one is diagnosed such as; “Did you smoke?” or “Did you breastfeed and have babies young?” We literally try to find a reason to place blame on the patient as if they had any control over their rogue cells. Is this the way in which people look for immunity from this disease?  

 

At this point, I think we all need to evaluate our own risks and assess what is best for us and STOP attacking others behind a damn keyboard if their actions don’t align with yours. I can’t help but think back to my grandparent’s generation and think about what they all lived through – Wars, the Great Depression, the Spanish flu, Communism, etc… I think they dealt with it like a bunch of adults without all the “stuff” we have today to simply complain. There was no Instagram to post about your current feelings or what random crap one ate that day. NO, they just dealt with it. Without all the hoards of technology we have today to sit around and whine and complain every second there’s a news story that we don’t agree with. Great. Don’t agree but can we get back to civility? Our obsession with technology is eroding our common sense. How about build some resilience into our future generations as opposed to creating fear and impending doom? We are becoming passive aggressive assholes on social media and what does that accomplish, other than prove one is an asshole? None of us knows what the future holds, but I chose to let fear go on this one because perspective opens the door to my reality and I refuse to live in a shell fearful of all that I have zero control over. Treat people with dignity, keep your opinions to yourself when you know nothing about somebody’s personal circumstance, and let’s see if we can get back to humanity, decency, and self respect. Perspective is a beautiful thing but only if you choose to open your eyes, take a deep breath, and see it.




Thursday 9 January 2020

2019 Recap


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 1st 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


yup, my niece got me on a horse again


Some of my fave times were mornings on vacay with this guy


This face!!! Summers are the best


I couldn't resist not posting a pic of Lola



My summer days, just relaxing with a cup of coffee and obviously Lola are my type of days. Oh gosh I am craving the summer already!!


Another wedding anniversary - year 7!!


Tolerating the freezing cold, lol. Tried to embrace it with some sledding


This sign in Mexico made me laugh. This pharmacy had EVERYTHING clearly, but my fave was probably the "smart pills," hahahaha


Seriously, love my mom and all she has sacrificed and done for me. Thank you is never enough & had an amazing time with her in Mexico


Give me all the sun...love love love the ocean


Cabo you were good to me...seeya 2019