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















Wednesday, 25 September 2019

***TRIGGERED***



The other day Rethink Breast Cancer shared a pledge on social media to increase our allies, so we could stand united to change the future of MBC. It simply stated the reality of MBC and the statistical chances of a metastatic recurrence after an early stage diagnosis which hovers around 20-30%. “Improving outcomes” because those of us with stage IV MBC truly need the help of our healthy counterparts to keep this going. This campaign was essentially created by some very kick ass women volunteering on Rethink Breast Cancer’s MBC Advisory Board with an inherent drive to change the future of this disease by increasing the allies we desperately need. This was the photo linked to the insta post: Simple but truthful…one sentence: “20-30% of people diagnosed with early stage breast cancer will be re-diagnosed with MBC” with more details below:




Then when I went on Instagram to look at the comments, I was SHOCKED. Shocked in a pit-of-your-stomach, disgusted way where you kind of can’t believe what you’re reading. In an effort to better the lives of those with MBC and to stand united was what the pledge was asking for & these were the comments I saw:
“what a terrifying thing to read on a Monday night”… “cue the recurrence fear and triggered panic attacks”… “not what I needed in the morning”… “read this and bang, anxiety through the roof”…“I like positive posts better”
… “Triggering”… “so triggering”… “scrolling my feed & then seeing this is like a punch in the face”… “well happy Monday”




(ya, happy Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, & Sunday over here as I still have MBC every damn day)… “Well that fucking blows” (yup, living it fucken blows even more)… “harmfully triggers”… “the research from my dr doesn’t show this” (umm…maybe he’s aware of how easily you’re triggered & is choosing not to engage. Scientific facts are exactly that: facts)…

 “to bandy about statistics without context and without warning is irresponsible” …(hmmm… what does bandy with statistics mean? It’s statistics and averages. It’s science. It can not possibly be more black and white. SMH)… 



“triggers”… “Worst post ever – I don’t need this and neither does anyone else… disgusting I'm rethinking you” (OK, is it the worst post because we are literally trying to save people’s lives? How
about most ignorant comment on your behalf…SMH & cursing out loud at this point) …“read about positive thinking and psychosomatic healing,” (ok, I’m not even fucken joking with the self healing bullshit – SO DANGEROUS & helps nobody) …

Oh gosh it didn’t stop there…


“I don’t like stats I don’t like stats”...well I fucken don’t like hippos but they still exist and that’s reality!!! Sometimes things can make you uncomfortable, but that doesn’t mean it doesn’t happen. When did this odd shift happen where snowflake culture uprooted common sense & factual reality? Suddenly honesty is viewed as fearmongering. This is why the general population thinks breast cancer is a treatable, good kind of cancer. 
“This type of “statistics” is so triggering.” Ok, firstly, when you quote the word “statistic” you make it seem like it’s not an actual thing, like a unicorn or a far off concept. It’s a FACT!


 It’s not a “query” stat, lol. Oh my gosh I can’t even believe I need to write about this & waste my precious time on some of this shit. And then: “Really unhappy about this post. This gave me nightmares.” Ok, for a person living with MBC we can’t escape our nightmare!! We actually die, so your nightmare is our reality. Seriously, I’m sorry but how incredibly stupid does this sound? And to put the cherry on top or more like the dog shit on your shoes: “I think this post should be removed” 🤦️...I’m just over here shaking my head with how ignorant & awful that comment was. 

 SO, let me digest what you just said? Because a FACTUAL STATISTIC that many women face as their REALITY is “triggering” & hard to digest we should silence & simply erase any evidence that it exists??? Let that sink in...What in the actual bloody fuck is happening??!! We have regressed this badly with the division between the ebc and metastatic community?? Now, when I’ve been advocating for this disease since having my own metastatic recurrence I feel as though I am fighting for these ill informed-pull-the-wool-over-my-eyes-i-need-to-be-sheltered-by-reality-or-else-I’m-sad population & they have zero clue how our actions may one day save THEIR lives!


I’m all for open dialogue and speaking up & I would love if people had insightful, fact-based arguments but at this point the only thing that seems to gain traction is: “agree to disagree.” “I’m triggered.” Oh man, I googled where in the actual fuck did this stupid, millennial word pop up from? “Triggered” vs “dying,” ya it’s just maybe a bit of a perspective shift. It’s as though one person used this word and everyone jumped onto the bandwagon like it somehow validated the argument of silencing those with MBC. You want to know what triggers me & many with MBC: knowing that this disease is terminal and I need to be on some form of toxic treatment for the rest of my life and never being able to stop! TRIGGER: watching many, many friends die. Listen, I come from the world of healthcare and I never in my career saw as many people die as I do now due to MBC. We are talking weekly. It’s horrendous! TRIGGER: Knowing the amount of funds allocated to actual research is dismal and the rest goes towards awareness and prevention which has not led to increased survival! TRIGGER: having to face your mortality in your 20s & 30s! TRIGGER: Getting scanned every few months to find out if the cancer is spreading or if you may be nearing the end of your life! I could go on and on because when someone tells me they’re triggered by STATISTICAL FACTS I simply wonder what would they do if they actually had the triggers of those with MBC? If reality is just too much then I don’t know what else is left to say? 


Aaaand what gets me is when the argument comes back as “but this is how I FEEL.” There’s a reason the word FEEL is in bold. Because that’s a subjective sort of thing but stats are objective and factual, sooo it’s like comparing apples to oranges and I’m just like WTF am I being pranked??!! Like these are not the actual comments are they
🤯?!!!! 


I just end up going...WOW...and fuck...seriously…holy shit where did all these people come from & under what rock were they living under up until now??!!!
I’m just over here like: holey moley guacamole and that’s the G version of the F version that came out of my mouth, which left me with a series of hot flashes because it was so infuriating!!



You try to start a conversation and they end the conversation...you ask for facts and they simply respond; “ Agree to disagree.” “Unfollow.” Oh gosh you totally validated yourself with that peace out …cop-out...running away response. 



 With that, do others see past this garbage as I do? It’s just I’m all for opening the conversation and talking about things but they just state how they feel when they wake up to this. And I’m over here just going it’s not about feelings so much with this post as it is “hey, I’m trying not to die. Can you help? Please?" Don’t know how else to sell the dire nature of it all? I don’t know how to be clearer anymore. I literally put it into 5 words but it’s still... “I’m triggered” 🤦️...and until we can stand united, lean into the nitty gritty horribleness that is MBC, this disease will never become chronic. The fear that boils over with the early stagers and their comments is a direct result of what they actually don't want to acknowledge which means to progress...to become metastatic...and die. By shying away from this issue, it won’t make it go away. Until we start talking and discussing the reality that is MBC, we won’t make strides to end it. When people say “I’m angry” I say, “ya, I am angry I’ve been faced with my mortality with MBC since I was 28yrs old & I’ve known more people die from this then I’d like to.” Asking to simply live is viewed as though it’s a privilege but it is my right and I am done with the silencing of our voices...of invalidating the importance of OUR LIVES. Let the uncomfortable begin because we are silent no more.

Did anyone not think that maybe if this disease wasn’t deadly then all you early stagers over there popping your Ativan due to being “triggered” wouldn’t be fearful anymore because people would no longer die? Just stop and THINK about it. THINK…EMPATHIZE...and then THINK about it some more. I don’t know how to make this more understandable. I don’t know how to make it clearer?! I have plenty of early stage friends who get it and stand united with the MBC community, but then when comments propagate to try to shut the MBC community up…ya, you’ve picked the wrong gal for that because I am done. Respect is earned and it’s a two way street. However, many comments simply want us to stop talking about it. We need to hide under a rock and just die apparently or else we have caused people to feel “triggered.” Hypocrisy at it’s finest… Ignorance at it’s peak… Stupidity in it’s lowest form.



The one thing I am done doing is apologizing for what my reality is. Don’t ever apologize for vocalizing your reality. EVER. The moment we apologize, simply because of other’s comfort levels we begin to deny the truth and what it truly means to have MBC. When did silence change the course of the future with anything? When did not standing up for all that you believe in have a positive impact on the future? The more we try to silence and deny what is happening the more we become a part of the problem and not a part of the solution.

My life for the past 5yrs has been about survival, whilst researching everything under the face of the sun to try and change the grim stats and learn about MBC. We are trying to help YOU. If you were drowning and I threw you a life jacket to help, but rather you say “no no I won’t drown I can tread water”…ya, for how long before you, yourself drown? You can’t tread forever!! There will come a point where you need that life jacket, and will realize that those throwing it at you are us; those with MBC.

In closing, I ask others to try and understand how awful this all was. The individual who has worked tirelessly to help start this entire allies campaign does not herself have MBC, but she is currently watching her mother actively die from it. She is an ally that stands with us, despite her immense heartache due to her own reality. In my heart, when I saw this campaign launch I thought how amazing it was that this woman is spending her own time, while her mother is near the end of her life, very well knowing that this campaign won’t help her own mother but may help others. Can you let that sink in? She has used her precious time in an effort to possibly better the lives of those with MBC & those early stage bc patients who will progress from becoming a statistic, and the responses literally were as dumb, uninformed, and simply so disgusting that my jaw dropped. If we can’t talk about the hard stuff, then we are failing. We are failing ourselves from recognizing what the reality of this disease is. We are failing society by pretending this doesn’t happen. If you think a single sentence noting the statistical odds of a recurrence are “triggering” then god have mercy on you because the day you learn your cancer has spread and your time is limited…ya, you’ll realize what an actual “trigger” is. 

I have realized that after being diplomatic in educating the public on MBC that diplomacy is out the window at this point. If you choose to write a completely ignorant response, by all means expect to hear my wrath because I am fucken over it! I am over trying to be nice to simply ensure I don’t “trigger” a panic attack. OK snowflake, let me start here by saying that life is not fair. Bad shit happens to good people ALL the
time, but by pretending it does NOT happen what in the actual name of all that is holy do you think will change? We will never make this disease chronic because we are burying our head in the sand to simply protect our “comfort” levels because “I don’t want to hear this.” We need to stop soothing and catering and apologizing to those that are uncomfortable hearing this because people are continuing to die right now and they need actual help!  This entire pledge has absolutely NOTHING to do with feelings. It has to do with life & not dying. It has to do with helping to change the future of which that is triggering you and your panic attack. That’s it.

With all the awful comments came the rally of the MBC community, along with early stagers and those who love them to stand up for what is right. I thank you all for not backing down and for educating with facts what is the sobering reality for far too many. I am proud of those who chose to
speak up instead of retreating to silence. I heard you. WE heard you and I applaud the hard work that many do in desperation to try and change the current statistics. You will be what moves the pendulum forward. These conversations NEED to happen so let’s keep it going. Advocate for yourself. Hiding won't change a thing. Spread the word. 

Educate yourself…and please will you stand with us by signing the pledge to show your solidarity that we will no longer sit on the sidelines and pretend this doesn’t happen. Rise above all the background noise & let’s make the biggest noise anyone has ever heard because quite frankly silence = death and chatter in the background can be our fuel to burn and ignite our collective voices to once and for all say: WE ARE HERE. YOU WILL HEAR US & WE WON’T BE SILENT NO MORE!


WARNING there are FACTS below so if you’re triggered by reality now is the time to pop that Ativan and work on your deep breathing & eat a pickle (I love pickles):

-        If you are one of the people who responded with: “that’s not true” to statistical facts about the fact that survival hasn’t increased in decades then you should educate yourself on something called lead time bias which you can find here from the NIH : https://www.cancer.gov/about-cancer/screening/research/what-screening-statistics-mean



-        If you want some quick facts about MBC check it out here at MBCN: http://mbcn.org/13-facts-about-metastatic-breast-cancer/



-        If you want a detailed report on MBC check out the Global Status of Advanced/Metastatic Breast Cancer Decade Report: https://www.breastcancervision.com/sites/default/files/review-mbc/global_status_of_mbc_report_summary_041416_digital.pdf



-        Did you know we do not keep track of metastatic recurrences of breast cancer? Therefore, people such as myself who were initially diagnosed at an earlier stage are deemed “cured” and a success, despite later advancing to MBC. We have absolutely no idea how many people in North America are living & dying of MBC as we only keep track of de novo patients. If you would like to know more about this very important topic check out this piece written by the Huffington Post discussing this very issue: https://www.huffpost.com/entry/where-is-the-data-the-epi_b_12311030



And please go to Rethink Breast Cancer’s Insta page (@RethinkBreastCancer) to find this thread and leave your comments. We can’t stop talking about this. This is about people’s lives and we need to recognize that this is happening. Stop sugar coating a deadly disease and stand up for what is right! Goodnight & peace out!!!


Thursday, 4 July 2019

This Is How We Rad...SBRT specifically;)

In my last post I noted having a consult with a radiation oncologist to discuss possibly doing some targeted radiation to my pesky sternum. After that consult I ended up deciding to go ahead with radiation. I realized this may be a good post to share the process of getting rads as I remember the first time ever in my life getting radiation and being completely afraid and just creeped out by the whole process.

The first time around with early stage breast ca (ebc), I remember really hoping I wouldn’t need to get radiation. I mean I think part of me truly knew the answer but I tried to be ignorant and hopeful which with this disease sometimes ends up biting you in the butt! For myself, I always had an association that radiation exposure=cancer.

I think one of the most helpful components, for me anyways, that reduces my stress level is to know exactly what’s happening and how things are to be done. I’m super anal with everything and have copies of all my bloodwork results, scans, basically everything so you get the picture of my anal retentive nature with staying on top of my health. I stop just short of trending my bloodwork just for simple sanity purposes clearly.

I always went looking for fellow bloggers when I looked for answers on what certain treatments may look like. You can read and be informed and educated on what to expect, BUT I have found only those living a shared experience can truly tell you with complete transparency what it’s actually like.

With that said, here’s the run down of the treatment I received, why, and the steps involved along the way:

I had about 2.5cm of active cancer in my sternum (3mo ago it was 1.9cm) so we knew it was growing and since the rest of my bones with a history of cancer essentially only show sclerosis and my brain 🧠 is totally empty (clear of mets but at times I feel like I’m missing more🙄) this option was more appealing. With that, my oncologist felt it may be a good time to explore the possibility of stereotactic body radiation therapy (SBRT). This is basically a very high dose of radiation directed at a very targeted area, without requiring a long course of treatment. SBRT typically goes up to a max of 5days (doses) really depending mainly on the size of the area being treated and the actual burden of disease. It doesn’t damage as much surrounding tissue which is wonderful for moi, getting it!

So with that all said, the cancer center I’m a patient at noted only starting to do this type of radiation (SBRT) here on sites other than the spine 6mo ago so I guess I’m glad I never radiated my sternum previously or earlier on in the disease course as this option wouldn’t have been available to me. They considered doing this rads on my sternum as “investigational.”

Some of the risks associated with radiating my sternum are actually linked to the fact that I had previous rads in 2012 to my chest wall after my ebc diagnosis and some of the radiation lines/beams would cross over, hence increasing some risks slightly. Those included possibly more skin issues and there’s a longer term risk of fracturing the sternum as the bone would weaken, along with one of my ribs. This bothered me but when I asked the rad onc he basically told me I could leave it and not radiate and my sternum would eventually break due to the cancer itself, or I could radiate and have that as a LONG term POSSIBLE risk. So that made rads seem even more worthwhile at this point. I really appreciate it when a physician lays it all out there because I feel the decision becomes a bit easier to make. As well, I would double my long-term risk of lymphoma and sarcoma down the road, but this is the deal with cancer: You need to evaluate the risks that exist right now to the potential risk that could happen 15yrs down the road. Where will cancer therapy be in 15yrs? You’re always left pegging and weighing one risk over another. It’s always a fine line and a constant balancing act of keeping the cancer at bay, whilst trying not to overtreat as that is also very taxing on the body, and this isn’t like accidentally taking a course of antibiotics when your illness is actually viral, although don’t get me started on the overuse of antibiotics and the fact that I feel superbugs are going to take over and kill a LOT of people - that’s a story for another time but come on people, NOT every little ailment needs that damn amoxil : public service announcement and random fun fact😉😁


Prior to ever getting rads, it starts with a simulation session so that the radiation onc & physicist can plan out the treatments to follow. Essentially, they take CT images whilst creating a mould over the spot of your body to be treated (the mould was more specific to SBRT). I was told that the type of mould I required would be one that would tightly
CT scanner for radiation planning
secure over my chest to prevent significant movement, along with deep breathing. These moulds are placed into this box with hot water which they quickly pull out and apply over the area to be secured as the mould hardens quite quickly. I did have to laugh as the lovely tech pulled it out & kind of threw it over and it half slapped across my face (think the cheese challenge where parents are throwing a piece of cheese on their kids face, lol) and all I kept thinking was this mould seems to cover my whole body. By the time she turned and realized where it landed, she apologized and threw the mould back in the bath as it was clearly hardening in the wrong position...aka my face
😂, lol. Once fitted, the mould was secured over my chest, neck, and chin, and then CT images were taken in place after it was bolted to the table. I think this entire planning process took about 45min, with the techs explaining the entire process. These planning sessions are typically also when they would give radiation tattoos to have markings that align. Since I had chest wall rads for my ebc diagnosis I had 4 tattoos that they stated they could reuse for my treatments, so I didn’t require more...that’s as bad ass as I am with “tattoos,” lol. I’ve essentially got four Polk-a-dot type tattoos.


Once the mould was created, it's secured to the table

They also take pics to see how your hands sit, and the position of the mould etc.. so that they can
make the set-up identical for when you actually receive radiation


After the CT simulation planning, they typically give a max of around 2wks to have it all planned out. My rad onc felt based on my specific circumstance that I could get through with 4sessions total. SBRT is essentially the same type of radiation I had on my brain 5yrs ago but that was referred to as stereotactic radiosurgery (SRS). It’s essentially as effective as having surgery to remove it as it pretty much burns a hole and obliterates the cancer. That radiation was very effective on my brain and I have never had regrowth at the site or any lingering issues. Plus, to be honest, I was quite shocked as to how well I felt when I had SRS on my brain. I truly felt pretty good when they radiated my head and it was a one-time session. Actually, I didn’t even take steroids with that one so I wasn’t expecting SBRT to my sternum to be too hard.
Essentially the part that is red
is the part that receives the highest
target of radiation with the other beams
showing what else will get radiated simply 
from being in the field. There's a reason 
these physicians go to school for many years
but that's the Coles notes version I suppose
Prior to starting rads I was instructed to start steroids the day of (anyone who knows me knows I HATE steroids so I wasn’t super fond of this idea and did want to ask the rad onc if it was an absolute necessity to take). I was also told to start panto (for heartburn and continue for 30days post rads), along with Zofran (for any potential nausea).

The first radiation treatment is typically slightly longer as they set up & ensure everything is properly lined up, and lasted approximately 30min from start to finish. My rad onc was there and spoke with the hubs while I was being treated, and he inquired about my questions about the steroids. He explained that the purpose of the Dex would be to try and mitigate a pain flare and inflammation that would happen. He did note that once swelling starts it could prove difficult to fit me into the mould and that it would likely be quite painful to squeeze me in, so it seemed like the most logical decision, especially when he felt I could double the dose of steroids if need be😳
. He also told the hubs to be aware of any signs of pneumonia once treatments were complete as that was a risk based on my one lung being in the treatment field. Long story short, I chose to be optimistic about the steroids and I truly felt I would have a burst of energy and so I made tentative plans to clean my house. I mean hard core, on my hands and knees cleaning every nook and cranny, as steroids typically would make me into the energizer bunny. Ya, that did NOT happen!!! Epic fail for spring cleaning over here 🙋...I’m still trying to find the energy to do this deep clean, lol.
The room & machine where you receive radiation


The room where you get radiation is large with one big machine that circles around you. Prior to every SBRT treatment they align you with the beams, secure the mould over you which, once hardened, is super TIGHT. Like good luck chatting as I couldn’t even really open my mouth (maybe the underlying motive was to shut me up🙈🙊
...the queen of rambling and random “fun” facts right here 🙋, lol)! They then also put my hands into this contraption which simply further secured and stabilizes to reduce any movement, along with a knee wedge for comfort.

Once everything is placed, the mould bolted to the table, then the techs leave the room and do x-rays prior to receiving the actual radiation treatments. From there, if the target is even slightly off they’ll reposition you or adjust where the bed is prior to beginning. The actual radiation involves this large machine rotating around your body, with
A view from above

radiation essentially coming from different angles which were carefully planned by the radiation team. The machine makes a slight buzzing noise, and then before you know it it’s done and finished! You don’t feel anything during the actual rads, BUT I did realize even after the very first one that this felt different from when I had SRS on my brain.


Later after the first dose I was bagged and SO tired. It felt like it hit me out of nowhere and I was a bit surprised (not sure why as it is radiation), but I think I was expecting it to be more similar and easy as when they did that one spot on my brain, granted this was a larger area being hit so maybe that’s why? I decided to go for a little walk with our dogs and my hubs to see if the fresh air would help. Ya, not so much. That night, the hubs and I started a new series on Chernobyl. Ironic. Don’t know how we thought that was the show to watch literally after just having radiation😳. Holy shit balls!



After the third treatment I had noticed very slight pain to my sternum but nothing that required any additional pain meds, but the sleepiness was a whole other beast. I absolutely take care of myself, drink, and rest as need be but I honestly haven’t napped in years...maybe even before 2012!! The thing that’s tough with radiation fatigue is rest doesn’t do anything. You sleep, you wake up, and you feel exactly as tired as you did before going to bed. It’s a bit frustrating & so I rest and lay on the couch and lotion my chest with the Galaxyl cream. Just living the life in my 30s, lol.

At this point I think it’s fair to say that I feel a bit like a nuclear
☢
️ disaster!! I had 20 rounds of regular rads to my chest wall, axillary nodes, and supraclavicular nodes in 2012, one round of SRS to a solitary brain met in 2014, and now 4rounds of SBRT to my sternum. I’m hoping this treatment obliterates what cancer I have in my sternum and provides good local control for a very, very long time!!
It was at around week 3 when I noticed my skin start changing and we were at about episode 4 of Chernobyl, lol. Spoiler alert: it’s about the time when the workers started losing all the skin on their faces and bodies, so really stellar timing on that too😬👎. The fatigue is cumulative, so you guessed it, I am dragging my butt and I’m bloody tired!! I did end up needing to stop chemo prior to, during, and after rads so I had 5wks off which I was excited about but in the end it really did feel like I replaced one toxicity with another. Super peachy😄. 
And just for good measure this was the change room selfies documenting 
each radiation session.

UPDATE: It has been two months since I completed SBRT (and clearly this blog post, lol) and my skin held up great to the point that it looks pretty much completely normal! I had a lingering cough that lasted about a month along with some issues swallowing in the immediate post-rad interval that they thought may have been related to a radiation burn to my esophagus. Really the one thing that lingers is this fatigue that comes on out of nowhere and makes me feel exhausted. I think what is important to mention that I feel many don’t quite understand, is the fatigue can come on out of nowhere, and despite looking like everyone else I struggle with the overwhelming sense of it. Therefore, if you know someone who has cancer and has recently completed radiation therapy please be mindful and respectful of the fact that we may look well but that does NOT translate to actually feeling well!! I’m trying my best to be there for friends and get together, but at times I feel like a shitty friend because I just can’t do it. So please understand that this isn’t a feeling of being tired because that’s easy to fix with sleep but this is an exhaustion that no amount of sleep or rest will fix. With that said, the SBRT I completed two months ago already shows a significant decrease in metabolic activity to my sternum which makes all the fatigue, lack of appetite, and basically everything worth it!! Now if only others could be as lucky that would be the only thing that could make all of this good news any sweeter.