***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!

SIGN THE PLEDGE TO BECOME AN ALLY HERE: https://e-activist.com/page/48027/petition/1?ea.tracking.id=fb&utm_campaign=MBCAllies&utm_source=Facebook&utm_medium=social&fbclid=IwAR2FcvlH79zonUa4ItWBZk22yHFNoCuCba59vFTbqxe1aJf8cXk64LiERhg

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!!!

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.

Surgery for Hubs & Scan Results for Me

2019 has been off to shitsville. It’s not a town I’d ever choose to visit...it’s one you get thrown into and try to escape from but this is life, right? With that said, things could be MUCH worse so I'll continue to remind myself of that.

Just a quick recap from my last post; January 1st started with my hubby ending up in emerg due to excruciating back pain. Long story short, he had a badly herniated disc in his lower back. In the past, physio typically would resolve it but this time was definitely not like the previous times and surgery ended up being warranted. Going into the surgery I think we were both “excited” (that’s really not the right word cause surgery is shit regardless of how you want to paint the picture) but more so ready to be DONE and to start the recovery so we could get back to our usual life.

Surgery itself went great! He went home the same day, followed the instructions of his surgeon to a damn T. Well, I’m sure as many may have guessed it our lives never go as planned. When I talk about being in a torrential downpour, ya we’re past that and moving into hurricane season.  

I had my quarterly scans. I had an early morning brain MRI so I got up before the hubs and let him sleep as he was still recovering himself from surgery. When I got home he didn’t look good. He was complaining of a dull headache, was super diaphoretic, febrile, and was pale as a ghost. He then told me he felt like his back was “wet.” Sure enough the top part of his incision was suddenly leaking quite a bit of fluid. I knew at this point none of this was normal so we headed to his GP to have a look. From there they were worried he had spinal sepsis. Ya, not the words you ever want to hear, so from there we headed back to the hospital where I had just finished up my brain MRI.

I swear everything in our lives always likes to occur at once. It’s like a lightening bolt striking you, whilst you’re already being electrocuted. Scans are stressful in and of itself, BUT this week I didn’t really
even have a second to think about it as I was more stressed about the hubs and whatever was coming out of his back! It literally looked like purulent mixed with serosang drainage. I guess this topped my “regular” level of stress to the point of universe-just-stop-because-I-don’t-identify-with-the-energizer-bunny!!!!!! I’m a turtle or a sloth. Both with physical stamina and mental stamina. My brain just goes nope. I don’t know but this year it’s like the universe decided scans weren’t producing enough stress, sooooo let’s create turmoil in every other aspect of your life. Perfect universe...just f^ck*n perfect. 

I should call this post, “the series of unfortunate events,” as when we got to emerg it was busy but we didn’t think the wait would be too long as they were made aware of all that was going on as his GP sent a letter ahead of time so they knew we were coming. At triage, I noticed they had categorized him as “urgent” to be seen, but were told to just sit in the waiting room for a few minutes while they got a bed. The few minutes rolled into an hour of my hubby pacing as he couldn’t sit and well...yes, I started to get seriously mad when I saw someone who simply needed some sutures in his hand go in before my hubby!! I could write an entire post about the abuse of emergency services with minor nothings that should NOT be there but I’ll leave that for another day. If you can sit in emerg, chit chat, play on your phone, and complain, ya you don’t need to be there!!!! At this point, we went back to the triage desk only to learn that their computers had crashed, and they had completely misplaced his chart and were actually shocked that he was still in the waiting room (insert face slapping emoji here). From there he got a bed, was quickly assessed, and neurosurgery was called. Once neuro came they decided to admit him because they were a bit perplexed by all that was happening.
The next day I had my PET scan, and joked with my hubby that I should have bought a weekly parking pass for the hospital as we were there every day that week! I will say that the PET scan was an hour of sleep I desperately needed and actually wished I could’ve slept a little longer. From there I went back up to see the hubs man and was told they were going to take him back to the OR as even 24hrs later his back continued to leak a significant amount. He went in that evening for an irrigation and debridement as at that point they were querying between an infection or a CSF leak. An infection in that area after spine surgery can be a massive disaster. Like google it and the two most common words to pop up are: paralysis & death. I didn’t want to scare my hubs anymore so I kept that bit of info to myself.

With all honesty, that week seemed to have melted together as I lived off of coffee for days and went a couple days without eating anything at all. The day he went back to the OR I got home after 11pm, had a shower and fell into bed, only to repeat it the next day. Correction: I had to lay down on the floor before ever making it into my bed as I physically couldn’t make it. I laid there for 5min before finishing my voyage that extra two feet into

bed, lol. I was doing a shitty job adulting. It always amazes me how much we can go through, reach a point of exhaustion we didn’t even know existed, and yet we continue to still be able to just deal with it and move on! It also happened to be my off week of chemo which in theory sounds nice, but in actuality that’s when side effects peak so the exhaustion was intense. I found as long as I didn’t actually stop I would stay awake.  

Post-op I spoke with the surgeon and he stated everything looked quite good when he opened him up which was such good news, and that he wasn’t quite sold that it was an infection but wondered if it could have possibly had been the very start of one but assured me that this would be the end of it as they also instilled some powdered antibiotics and gave him a few doses of IV antibiotics. You have to understand one thing. My hubby wanted to leave the hospital the moment we got there, complained the whole day about not being able to eat, lol, & his birthday was a mere couple days away. I asked the surgeon what the odds of him being in hospital on his bday or this happening again and he said: “If he’s here on his birthday I’ll shoot myself in the head.” Ok, that made me more confident and I finally exhaled that this was finally coming to an end, the problem was solved, and he would come home the next day!! At this point, he’d been in recovery for a little while so I went back up to his room to wait, which turned into an a hour long conversation with his super sweet, elderly roommate who really was the kindest, spunkiest, & loveliest little lady.

As I waited and ten minutes turned into an hour my phone rang and it was his recovery room nurse who was thoughtful enough to ask me if I wanted to go into the PACU to see him as it was pretty much empty as he was done at the end of the day. Shout out to this nurse (you know who you are;)) whom I realized later I actually knew because let’s be real every nurse knows a nurse who knows another nurse, etc... it’s like six degrees of separation. I will say it’s these little things that nurses do (call me and let me see my husband instead of sitting and waiting and stressing) that really mean the most. So THANK YOU for your kindness as it truly was beyond

This is how I felt once he was out of the OR and got the all clear!!

appreciated & I did enjoy shoving ice chips in his mouth, hahaha. From here we truly felt this was the end of the madness that had turned into this week. The hubs would get to go home the next day and we could put all this behind us.

The next day I went to get my scan results. I actually didn’t even have a second to stress over them and made my hubs stay home as he himself was recovering. Overall, my scans are still stable-ish! The radiologist hadn’t sent the official dictated report but my onc had read it. The area that is lighting up and showing increased metabolism is growing and spanning a greater portion of my sternum than even 3mo ago.  Essentially, my sternum continues to be pesky & active so we discussed stereotactic body radiation (SBRT). He told me that there’s some newer studies that have shown a survival benefit to doing such. Listen, anytime you say increased survival I’m all for that game plan but in the same token I want to know what the risks associated with it are. The thing with cancer treatments, whether it be radiation or systemic therapies, is they’re all toxic in some way. I don’t make these decisions lightly. We decided to have a consult with a rad onc who specializes in stereotactic radiation specifically to discuss this further and see what the best approach would be moving forward. Systemically, we are staying the course and I will continue on with my current chemo (Xeloda), Herceptin, etc... The only other spot that was noted was one on my rib that wasn’t there before but I think we collectively came to the conclusion that that was a healed rib fracture from a couple months earlier, and NOT cancer. Overall, it was good news as my brain continues to be clear and all my other bone mets are dormant. Always a big yaay and relief to hear that! Now maybe with SBRT, I can get complete control over my sternum which does have a great deal of appeal to me for the obvious reasons: Less active cancer=longer life.

The conclusion of the week with scan results felt like we could all exhale and finally just relax. Really we were both excited to sleep and I was excited to celebrate, low key, Chris’ 39th Birthday. I would’ve typically had baked a cake, but despite sleeping I felt like I was behind a week with sleep and so I turned to buying a cake. I had to let go of my perfect idea of what I wanted that day to be and accept that this was ok, and honestly the hubs really didn’t have any expectations for the day because he was just happy to not be in the hospital.
As this story continues, I’ll remind those that read this blog that I typically take cannabis oil in the evenings prior to dinner so that I can actually eat and then sleep at night. I got the cake earlier in the day, had ordered a pizza, & was literally just getting super hungry, and high, and was about to call the hubs to come for din din when he yelled down to me to come upstairs as he felt something running down his leg. I went up, pulled his shirt up and saw that the dressing on his back was completely saturated with blood. Fu*k. Let’s just say I’m not

My brain is similar to dial up internet: very SLOW

a rapid mover once my medicinals kick in but I was calm as a cucumber, & I instantly knew that this was once again NOT normal. I could actually see the blood actively coming out from the bottom of the dressing and I knew I didn’t want to repeatedly expose the site so I grabbed what 4X4s I had left and put it on his back and reinforced it with tape. I couldn’t drive him because...well...we likely would have ended up at a 711 for snacks, and with how much it was actively bleeding we decided to call 911.

Hubs told the medics my precarious reasoning as to why I couldn’t drive and they were lovely and completely understanding & I was horrified. I got in the passenger side of the ambulance and thought I need to pull it together as my medicinals were in full effect at this point & I longed for the pizza we left at home. As we left I realized we were not exactly headed the way I would go to the hospital, so I quietly asked the medic driving: “Can I help you get to the hospital. I don’t want to overstep but do you know how to get there, lol?” She was lovely and quickly chimed in by telling me; “absolutely I don’t usually work in this end of the city so I’ll take any help.” As much as those medicinals had kicked in I knew I had to pull myself together by the time we got to the hospital as I know the trajectory of where I’m headed after taking cannabis and that’s typically towards munchies, food eating, laughing, & ending with comatose sleep. Right now, NONE of those options were feasible or bloody appropriate!

We ended up being seen quickly, thank goodness, and neuro came and saw the top part of the darn incision had opened up and felt there may have been a hematoma below the surface which possibly burst, and with the top part open that was an outlet for it to get out, hence why it kept on draining. They decided to restitch the top portion of the wound and reassured us that that would be the end of it. We got home after midnight and decided to celebrate with cake and all the next day.

Overall, I can’t believe it’s already April. I think we are ready to get back to a slower pace and to have some more mundane days in our near future. I suppose the last month made me acutely aware of how non-linear life can be. I mean it's not like I wasn't acutely aware before any of this. We learned that even when something is supposed to be a simple surgery, in actuality, don’t ever let anyone tell you a surgery on your spine is “simple.” It’s not. I am happy to say the hubs is now doing great and his incision finally looks nicely healed! Big shout out to both our families for all your help & for taking care of our wild pups during this time. Here’s to a new month that is MUCH quieter than the last!

This was right before the hubs went into the OR. Now let me give you a little background on this pic. Firstly, since he hasn't been able to work he currently looks like a lumberjack with his bushy beard, hahaha. I may be smiling but I joked I would smother him as he was HANGRY and if I needed to hear it one more time I may have sedated him myself (i'm not mean, but remember I hadn't eaten either)! He was in the midst of telling me for the tenth time, both how much he just wanted to get outta there and how hungry he was.

The typical scan pics when you're going on minimal sleep and just trying to stay afloat as an adult

We kinda just quickly lit the numbers as the #3 was broken right in half. Honestly, it was a fair representation of his 39th birthday and all the cracks and complications that week had in it

Where that crane is, is where they are currently building the new cancer centre here in Calgary. With that said, this city has needed a new cancer centre for probably two decades at this point!! It will be nice to see it come to fruition because seriously we can do SO much better for this population of people impacted by cancer

Just for good measure I had to post a pic of our dog Lola because she always makes me happy:)