Saturday, 13 April 2019

Surgery for Hubs & Scan Results for Me

2019 has been off to shitsville. It’s not a town I’d ever choose to’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:)

Friday, 29 March 2019

Two Months Behind...

I should start by saying this post is from JANUARY, & I just realized I simply forgot to post it. Story of my heads up I’m only 2mo behind! I promise it won’t take me another 2mo to post my next one as I have a newer update and will try to post that one in the next couple days...or within the next week;)...

Here we are into 2019 and I’m pondering the realization that I did not discuss my urban garden veggie planting from the summer of 2018, nor did I show any pictures of my urban garden that yielded some great veggies and left me a little bit in the mood to continue to build some raised planters. Correction: left me wanting my HUBBY to build more raised planters;). I felt this hobby turned me into the young-elderly neighbour, and that’s ok with me because I am living a zero fu*ks given lifestyle at this point:), and there’s something so incredibly enjoyable about pulling your dinner right from your garden! If the suspense is killing you to know what else I grew, simply scroll to the bottom as my Hungarian banana peppers were one of my faves!

In all seriousness, kind of, I have been so MIA on here and truthfully I’ve missed it! I’ve become so busy doing so many other things but I feel at the sacrifice of the only thing I really enjoy doing and that which feeds my soul which includes blogging and connecting with others living a similar experience. I’m not a New Years resolution type of gal anymore because really the only major goal I have on my resolution list is: continue living. That’s it. I can fill in the days however I choose to and I am ok with that. I don’t need an epic bucket list type of day everyday like feeding a lemur in the wild, while doing yoga, and embarking on some epic mountain voyage only wearing one shoe or some random shit that is just more extreme then the next. Truthfully, it just exhausts me even thinking about it, and with full disclosure I had to google what a lemur was because I suck horribly at identifying animals. I feel I’ve discussed my lack of animal kingdom knowledge in some previous post but lord knows at this point as my memory is one thing that reeeaaaallly bothers me!! The basic animals I’m good with (cat, dog, bear, tiger) but throw in there any other thing (animal) and my brain just instantly throws that out of the memory bank. At this point my brain is trying to remember where I put my keys or did I take my chemo today?? I can’t fill my brain with leisurely animal facts. Anyhow, now I’m just rambling...

Some days i’m just tired and want to do absolutely nothing. Nill. Then I feel guilty and get back into it and end up more busy then I'd like to be. At times I feel I give so much of myself to everyone else that I feel bad to just say NO, and so I continue say YES and guess what? It has brought me zero happiness, just increased stress. Cancer advocacy is also bloody tiring as well, thankless, emotionally draining and an exhausting area to get involved in. Add the terminal illness cloud looming over your head to the mix and it brings a whole new bag of emotions and difficulties. I constantly want to feel like I’m doing something to better the lives of those living with cancer, but at the same time I’m noticing my own life fly by while others in the same situation are out vacationing and enjoying their lives. Please don’t confuse not having children with not having a life!! Sometimes I feel as though others have come to expect advocacy out of me because I am doing “well” currently so I should be helping others. But here’s the thing, doing “well” is a very relative term. YES, I am “well” because I’m not actively dying and in hospice, BUT what has become so difficult with advocacy is just how different my brain is from even 10yrs ago. I mean, hello, this post is TWO MONTHS old & I finally just remembered to post it, lol. I have been on chemotherapy for almost FOUR YEARS straight! Thinking, attempting to memorize anything, takes on a whole new meaning. It’s HARD. And that is highly frustrating because I never used to be like this. So now, something as simple as volunteering, isn’t easy for me because it requires a lot of concentration, rereading the same shit a dozen times and still not knowing where I’m headed with it. It disturbs me and makes me feel stupid. I don't consider myself dumb (other than the animal facts I suppose) and I used to pride myself with always getting on the honour roll in jr high and high school, gold pencil awards in elementary, and finishing my university degree with distinction. Now, I’m lucky if I can get through a sentence or a story before my fleeting memory kicks in. People laugh and I’ll laugh but overall it’s not funny and just another thing this disease and its treatments have etched away at, taking away any known intellect I had left. 

Healthwise I had scans right at the turn of the new year. I made that standard stupid top nine collage on insta for 2018 and I wrote some shit about how well 2018 treated me...wish I didn’t. January 1st came around and I spent it in emerg with my hubby....then back again on the 3rd. Both these times it had nothing to do with me but my hubby and his back. In between this time I also had my scans so between lack of sleep, stressing over the hubs and his health, and then throwing some imaging on there I was stressed, exhausted, oh and then also sick with some respiratory virus (self diagnosed) hacking like a chain smoker along with a fever. I didn’t bother calling in or going to emerg because frankly there was so much other shit on the go. I dealt with it and my fever only really lasted one day! Then one day I started getting this insanely intense pain on the right side of my chest. It reached a point where I needed to know the cause of it because it was affecting my ability to sleep along with affecting my ability to take deep breaths. Essentially, I broke a rib from coughing. Nice conclusion to a simple upper respiratory tract infection...totally just needed some more obstacles for 2019:/. 

The day I had my brain MRI, I was going on little sleep, stressed and just tired. My brain MRI was at night so I made the brilliant idea to take my medicinals PRIOR to the scan and I would just have a nice, relaxing nap. Holy shit that did NOT happen. Long story short, I was visibly high when I got there (No, I did not drive but my lovely mom did, lol). My eyes were so blood shot and my mouth was so dry I felt like I had trekked the desert for days and needed water before the scan, lol. There was a vending machine so I thought thank goodness. I put my money in and went to press the picture of the water. It didn’t dispense. So I pressed it harder. Nothing!! At this point I was perplexed so I started pressing it repeatedly. Finally, my lovely mom looked at me and asked what I was doing to which I just turned because she heard about my dry mouth complaints, and she pressed the BUTTON under the picture which is the typical standard way 99% of vending machines work. I was so happy to get my water, whilst feeling like I cracked some mysterious code to get it. I was just really high people. There was nothing challenging to getting a bottle of water, other than my own lack of awareness. 

Once I got called back for my MRI I was looking forward to having a nap. I laid down, put the ear plugs in, and then they secured that head contraption thingy over my head. As soon as I went into the MRI I felt panicky. I instantly knew what an absolutely terrible and awful decision I had made in regards to the medicinal consumption PRIOR to my scan. I couldn’t even open my eyes cause I was worried I’d panic. All I could think was don’t become the crazy person who wants out. So naturally I thought of ways to distract myself and the only thing I could think of in my time of panic was to sing the alphabet in my head. I kept singing it over and over and over. I think it was a bloody miracle I made it through without pressing the button for an immediate escape. 

This is how you look getting scanned when you are CRAZY high!! Oh gosh, how my life has evolved or regressed?? I don't even know anymore

Essentially, my scans remained stable-ish for the most part! My sternum continues to be pesky with increased metabolism noted on the PET scan but all my other bone mets remain virtually asleep, while my brain shows nothing!! My sternum has been sore for a while and I can always radiate for pain relief but I like to use the radiation for unbearable pain and I am definitely not there so we will just continue to stay the course with my current treatment.  Since needing to slow down, to taking my hubby to his appointments & trying to care for him as well as myself, I’ve realized this year I MUST put MYSELF and my health FIRST and start to say no and not feel bad about it. I need to spend more time with my family. My husband. My mom. My brother. My nieces and nephews. It's time to realize life is becoming chaotic and I can't sacrifice my good days simply to please others. Those good days should belong to those I love the most. Here's to life slowing down a bit....

        I'm sure everyone was scrolling to see the garden pics below , lol, so here they are:

THIS boy is the same little boy I wrote a blog post about when he was born in 2015 and now he is a whole FOUR years old!!! He is my little garden helper, mini chef, smart, polite, & kind little boy. Honestly, he is a dream & I don't think I could ever sum up just how much I love him!!

My Hungarian peppers were delicious and this was the first time they actually turned out well!!! Excited for the 2019 season to start:)

Pickled carrots are my go-to


Tuesday, 2 October 2018

Back to the Bell & a Dose of Reality

Here I am four years after writing a post about the chemo bell writing again about that lovely, shiny ringer. Recently, the discussion around this bell came up on Twitter and I wanted to once again discuss the opinion I have around it, along with many others with MBC. This is my personal opinion. I am all for celebrating treatment completion, and by all means give a certificate, a pin, or anything to mark that monumental day. If you are one of my early stager friends and thinking “oh lordy is she referring to me in this piece?” If you have enough insight to even think that then you are most definitely not one of these people so don't, for even a second, worry about that. OK, now that we have established that, I want to do my best to try and EXPLAIN why this bell bothers me still and please try, for the love of God, to just put yourself in the shoes of someone who is living with an advanced/terminal cancer diagnosis. Heck, some people with mets like the bell so by all means, but then there are others who feel as I do about it and since this is my blog I'll express my thoughts on this once again:). OK, you got your empathy shoes on? Here is my own personal why...

The chemo bell is literally just a bell that individuals ring victoriously once they have completed their said course of chemotherapy treatments. Once they are all done they ring this bell with such happiness and emotion. This bell is typically found at the nursing station, and everyone celebrates with smiles and applauds this victorious milestone. You did it!!! Now before you get nestled into your empathetic shoes, I want to make sure I make myself clear: I wish every single person who has ever rung or not rung that bell to remain cancer free. To move on with their lives and find joy, and beauty, and all that good shit for eternity and never ever have to face a metastatic recurrence, or incurable diagnosis. Got it? Good. Now with that out of the way, I will speak about the metastatic community because we hear the survivor stories. All. The. Time. Firstly, metastatic cancer makes everyone uncomfortable and gloomy because it is the worst case scenario. We are viewed as the Eeyore in the infusion room – yes, I'm becoming philosophical here and referring to Winnie the Pooh. And guess what? It is bloody terrible!! I'm not going to sugar coat it. NOPE. The problem is we have become a society about comfort...about always celebrating the good, and showing the triumphs of overcoming illness; specifically in this case cancer. Unfortunately, what becomes sadder is many don't overcome or survive this disease and that's not due to any fault of the individual. It isn't something they did or didn't do. It's quite simply because it's a disease that does whatever the hell it wants to whoever it wants. We can't meditate, eat vegan, run a marathon, or do anything ourselves to stop our rogue cells from killing us. I'm sorry if any bubbles burst with this news flash...reality can be a tough pill to swallow, but it's still reality which means it happens, therefore we MUST TALK ABOUT IT.

Now you might be wanting to know, what does this have to do with the bell?? I have reached my peak limit in my life of constantly trying to make others around me comfortable. Since being diagnosed with a metastatic recurrence I have seen time and time again just how uncomfortable I make others, mainly others who have had early stage breast cancer, when I note I have MBC. I have gone from light hearted conversation prior to them realizing I have stage IV cancer to complete silence. I have hair after all and I'm young-ish, so I must be in peak, optimum health (Insert face slapping emoji here...actually I would rather have an emoji of me slapping with a fly swatter the next person who has such ignorance to think that hair=good health). People stop talking and walk away. No jokes. We have become a society so knee deep in inspirational quotes and looking on the bright side that we do not acknowledge those who are in the depths of complete fucken despair because we “just can't think like that.” Gotta stay'm a survivor. I'm sorry it's hard to move on with life, but do you know what's even harder? Having to fucken actually live with cancer until it kills you!!  Now try to envision being on che-
motherapy for the rest of your life with zero expectation of it curing you, and just waiting for the other shoe, or atomic bomb, to drop on your world, only to blow it up further. No reprieve. Just trying your absolute fucken hardest to live the best life humanly possible when the side effects from treatment or the cancer itself are robbing you of the ability to actually feel good. Or having to travel and use your life savings to enroll in clinical trials for the slim chance to extend your life by mere months because you are simply so damn desperate to live. We can't mentally try to move on and the uncertainty from having scans every few months is by far the biggest mindfuck, cluster of stress, you could never even remotely fathom. Why? Because you could never even remotely understand unless you too are living it. The stress I experienced with my early stage diagnosis was the tip of the iceberg compared to the stress I live with since being diagnosed with MBC. Stress with MBC is stress induced by reality, whereas the stress I had with my early stage diagnosis was stress induced by my fear of the possibility of what else may happen. I was afraid of getting mets because then I would be living with the reality of what I feared the most. This disease isn't about our breasts. The fear that comes for me is the fear of suffering and death. What I have seen with my own eyes watching my friends die one after another, after another, after another... Where the bad days start to outnumber the good. Can you see the difference?

I have tried SO hard to not make others uncomfortable, but I have now learnt that by doing so I am only doing a disservice to myself and to others who truly need the most comfort, empathy, and support. Those who will never complete treatment. Those with MBC are typically shunned at support groups because they are what everyone fears. To me the bell is a way of screaming “I am OK, treatment is done, and I have my life back!!” Great. For you. Have you spent a minute looking around the waiting room in your cancer center? Have you taken a minute to look around your infusion room? Do you know how many of these people are simply trying to extend their lives at the expense of horrific side effects you couldn't even comprehend to simply live a little bit longer? When you ring that bell, it reminds those of us in treatment forever what will never be. How unlucky we truly are. We get to watch you and reminisce of all we have lost, of all that will never be, and of just how different everyone in that infusion room is. We are not as lucky as you ringing that bell.

Let's try and bring some perspective to this. If you found out your loved one was in a car accident and you rushed to the ER, walked into the trauma bay and learnt your loved one was going to be OK with only minor injuries sustained, BUT at the same time there was a trauma patient in the bed next to your loved one, with only a curtain separating the two, and you could hear them trying to desperately resuscitate this individual while their loved ones looked onto this dire situation. Would you ring a bell in the trauma bay and have a dance party simply because your loved one survived and could move on with their life if they so chose to?? Ummm. NO, unless you are a spineless, mean, and evil person!! Truly, how insensitive and inappropriate would that be? THIS is what it feels like to many who have incurable cancers sitting in the treatment rooms while someone who just had better luck then you, for now anyways, celebrates loudly and publicly. Why is cancer so different? Instead of trying to pretend anything good came of this disease, why not acknowledge that we need to do better.

Those with advanced cancers always need to consider and make those around them comfortable. Not for themselves, but for those around them. I think it's time all people with incurable cancers stand up and start changing the conversation so they can become heard, so that they don't simply become further isolated and shunned. Do you know how heartbreaking it is to hear of MBC patients attend
support groups only to become further isolated because nobody else in that room could relate to their stage IV diagnosis? People act as though you have an infectious disease that they too may catch from you, but they're more afraid of how it will make THEM feel. Pop an ativan and listen up ladies and gents!! To hear of a newly diagnosed woman with MBC, in tears, getting escorted out the back way after a surgical consult so she wouldn't need to pass the women in the waiting room due to the realization that her breast cancer had spread beyond the breast? This wasn't to make the woman with the stage IV diagnosis comfortable, but to make those early stage women in the waiting room not feel uncomfortable by a woman in tears because of her very uncertain future that suddenly became scarily finite. YES, this is NOT OK and yet it continues to happen!! Does anyone see what I'm saying? We value, or seemingly don't care about the most vulnerable and those inflicted with the absolute most dire prognosis. This NEEDS to change. We are leaving those that need the most help stranded and alone while we continue to listen to the “survivor” stories. We need to hear ALL the stories. When mass amounts of people are continuing to die from this disease, we need to hear the other side too. We need to hear from these men and women. YES, men get breast cancer too so we need to include them in this as well, along with the spouses who have lost their loved ones. Their stories are not any less important than those of survivors. We will never solve this if we don't recognize that there are two very different sides to this and right now the stories are skewed in one direction: one towards survivorship.

As screening techniques become more and more sensitive to malignancies, or potential malignancies, cancer rates continue to increase. We need to recognize that many will never get a clean bill of health, and that those who are long term “survivors” got there due to current, scientifically proven, advancements in therapies and sheer luck. I'm not going to get into the depths of survivorship and people assuming it was their alternative therapies, coffee enemas, juice cleanse, mindful meditation, and vegan diets that got them there. You know why? Because I have known far too many young women who did all of these things prior to getting cancer. And yet they still got cancer. And died.

I want everyone to become a long term survivor. I want everyone to never hear the words; “You have cancer.” I want everyone to find joy, fulfilment, love, and happiness in their lives and to simply live. But I know that that is not reality as much as I would love it to be. With that, I am simply asking people to become mindful to what is happening around them. Next time you step foot in a cancer center or an infusion room, look around. Many people get these therapies for palliation to simply extend their lives. They will never finish treatment. Their life will be taken by this disease. If you are one of the lucky ones who gets to one day walk out of that cancer center and are given the opportunity to LIVE, please recognize the unbelievable gift you have been given. Please, I understand how hard it can be to move on (I was one of the early stagers initially before having my cancer recur), but at some point life becomes about choices. You can choose to make your life whatever you want it to be. Don't allow fear to squander the potential for a beautiful life. Pick up the pieces and move the fuck on...those of us with metastatic disease can only dream of such a luxury, and yet we watch so many become debilitated by fear. Fear won't reduce your chance of recurrence. Fear won't add any value to your life. Fear will slowly erode the beauty that exists right in front of you. I don't know what tomorrow will bring, but I do know that there is more to life then just me. Therefore, every month when I go get an infusion I thank my lucky stars that I can still go back every month, and I am alive. If you're a cancer survivor and are still reading this, thank you and I truly wish you good health. Go home, have a party, and celebrate your good fortune...just always remember how immensely lucky you are compared to those who have had their entire future stripped away from them. If you can't find a way to move on with your life, talk to someone and seek professional help. Mental health is an often overlooked component upon treatment completion and what these individuals need is not to continue seeing their oncologists but to get referred to the proper mental health professsional in order to help facilitate a plan to move on, to have the most fullfilling and meaningful life possible post-cancer. You HAD cancer and need the proper facilitation to not continue to live in agonizing fear. I don't want that type of life for any of my early stage friends.

Ringing a bell won't do won't change won't help anyone...just walk out of the cancer center and take a breath of that fresh air (well, not right outside the doors of the cancer center where people continue to smoke despite it clearly stating NO SMOKING, but that's another post in and of itself). Now recognize the amazing luck you have to be able to walk away from that cancer center once and for all. You can walk away...we are forever you see the difference yet?

Friday, 13 July 2018

20 Years & Scan Results

July 12th is 20yrs...20yrs ago today my father died of cancer. 20yrs to the day I sit in the same cancer centre waiting to hear the results of my most recent scans. It's impossible not to think of all he went through while trying to raise a young family, all well knowing that everything they tried was simply a Hail Mary. Nobody survived his type of cancer. In fact, at the time, they told him chemo would have no benefit. Surgery was too late to offer any form of extension of life, so he endured. Symptom management...all the while feeling like he was drowning. Out of all the scans I've had through the years, awaiting results today was by far the hardest. Hardest because my father lived less than two years after his diagnosis and the cancer steadily just progressed. I think back to his hopeless situation and can't even mentally fathom living it and what his thoughts may have been that he never expressed to his family. Ask any of us with stage IV cancer, and I believe many don't disclose every day that they can't get out of bed, are unable to eat, and are in so much pain they can't picture things getting any better. Sadly, the hardest component is simply living in your head with the "what ifs," the constant uncertainty of what your scans may unveil while living with the certainty that it's not a fixable situation. You keep the darkest thoughts to yourself because you don't want those you love to feel the same level of fear, sadness, anger, and uncertainty that one with metastatic cancer feels daily.

I'll keep this short as it was good news at my appointment. Still stable with some activity noted in my sternum. Not super surprised as I've had some more pain to my chest, but all within a bearable parameter. I will say once you've been diagnosed with metastatic cancer, the word "bearable" takes on a different meaning as sometimes you don't realize how bad the pain is as you just kind of get used to it and live with it. What all this means is I will continue on with my current chemo and Herceptin infusions. This month officially makes it THREE YEARS I have been kept stable on this chemo which, in the metastatic setting, is beyond unbelievable considering the average life expectancy once diagnosed with MBC wavers around 2-3yrs. Yes, I'm thankful I'm alive and my scans are good, but today wasn't about celebrating as much as it was about remembering the fact that, despite 20yrs going by, people continue to die of cancer. Not just MBC, but many, many other types of horrible cancers that rob too many people in the prime of their lives. Will it ever get better?

I have been "lucky" in the sense that I have gotten over 4yrs since my MBC diagnosis and, despite toxic side effects, I live my life. I speak of all cancers when I say just how purely horrible and sinister they are. This isn't just about all the physical pain, but the psychological torment it perpetuates on a day to day basis.

My father taught me what true strength and resiliency was. I'm happy to still be here and I am forever grateful that I lucked out with an amazing medical oncologist and nurse that have kept me alive and sane through these years. Here's to life continuing on, stability remaining, and for better days for so many that are currently struggling to simply stay alive. This is about the massive cancer pandemic that exists in our world isn't going away, and it sure isn't getting better. It makes me sad that despite 20years passing, new technology popping up every year (iPhones i'm looking at you), space travel, and all the major feats through the years; cancer still exists and we still can't figure out how to cure these complex diseases. I will continue to live off hope that one day we can see advancements in cancer that can parallel the rate as to which we see technological advancements...because if we don't, I can't even imagine how many families will be impacted in some way by all the awfulness that a cancer diagnosis imparts. Here's to more days...more research funding...and continued hope that leads to better outcomes for everyone who ever needs to hear those dreaded words: "I'm sorry but you're cancer can no longer be cured."