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 positive...smile...I'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 anything...it won't change anything...it 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 bound...do 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 today...it 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."

Sunday, 3 June 2018

Day to Day Life

As of late, I feel as though life has been busy, as in I have no clue what day of the week it is anymore. I can typically gauge if it's a weekend or weekday simply based on the television programming that's on. Weekdays you have the morning & daytime shows (Live with Kelly & Ryan & Ellen) and weekends are all about HGTV, lol. I now feel, in my own head obviously, that I am an interior designer and contractor as I tell my hubby how they should simply take the wall out and expand the kitchen, or add an accent wall in the bedroom. I know...I haven't written a post cause this is a super ridiculous and mundane topic, hence the radio silence (again) but I feel it's important to talk about the days in-between scans, vacations, and all the big, enjoyable, momentus occasions along with the oh-fu*k-what is happening moments...so here we go...

The warmer weather has FINALLY made its appearance in Calgary recently and I truly couldn't be more happy about it. I was starting to wonder if the ski season would roll on into our summer because at one point it did seem as though the snow was a nasty April fool's joke. But nope, thank god, and I finally managed to plant my veggies and flowers. For anyone who knows me, they'll tell you I LOVE gardening. I get inappropriately excited by watching my garden grow. However, the one issue with gardening after having been on chemo for the past, almost 3yrs straight, along with having had brain radiation, is when you go to buy flowers you quickly forget how many pots you have at home, along with just how many flowers you bought from the garden centre you just visited the day before. I literally went home and thought holy shit I have a problem!!! I had trays of flowers and then realized I now didn't have enough pots. Plus my hubby's spot in the garage was overtaken by flowers. He parked on the driveway that night. Well ok...so off I went the next day to purchase FOUR more pots. Don't get me wrong, they were good purchases but that's not the point... After I bought the pots I then realized with the size of a couple of them, I now didn't have enough flowers. Wonderful. So I went and bought more flowers....aaand you guessed it....I now once again had too many flowers. I was going to go back and buy more pots, but at that point I had reached even my threshold. You see, it became a vicious cycle!! My hubby now just looks at me and says, "Ok...how many did you buy?" He's aware of my problem. I then remind him about what he feels is worse; is it better to have a flower/gardening addiction or an addiction to heroin or cocaine?? Obviously, my gardening addiction always wins and I justify my purchases:).

The last few months I also got back into skiing which I hadn't done in probably a decade. I initially stopped after I did my final practicum in nursing in pediatric emergency. I loved everything about it, but after seeing numerous ski related traumas that I couldn't even quite fathom occurring pre-emergency focus, I officially became an adult. As in I became scared as shit of breaking something or puncturing something or just about anything you could imagine happening, so I simply stopped. I put my skis and all the equipment in the basement and thought if I want to play it safe, build a bloody snowman. Or stay inside and have a cup of tea. The latter seems to be a more popular choice the older and older I get. I swear, we all become adults when we can realize an injury that can occur to us that may break multiple bones or be deemed "dangerous" and that's it we are peace ✌️ outing, and then we fearmonger by telling our friends who still ski all the ways they could die doing it!! I do much prefer the oblivion of being a child.

Anyhoo, back to actually actively skiing... I had heard it was similar to getting back on a bike, except it's obviously freezing out and you're barreling down a snow-covered-with-ice-patches mountain. I mean really just like getting on a bike! Ok, that's dramatic as it really did come back to me except I felt slightly old-ish as I definitely felt it in a few bones, but honestly I loved it and when I thought back to when I was diagnosed with mets I was proud of even trying again, especially with bone mets. Obviously, if I had bones that were on the verge of breaking I would have rethought this decision, but my scans have been stable and it was one more part of my life I just wasn't going to allow cancer to erode. It was nice to be able to head up to the mountains a few times this past season with some good friends and great company.

After I got back from Toronto at the end of April, I appeared to have caught some respiratory infection that lasted waaaaaaaay longer then I had anticipated or hoped for it to last. With that, maybe from coughing so much, I ended up getting pretty bad sternal pain that would wrap around my upper back. I don't want to say I was incapacitated by it (that's dramatic), but I will say it was bloody painful to the point that just slightly touching certain parts of my sternum would make me want to wince in pain. Plus, the location where I live just isn't conducive to sticking to ONE season, but rather we have huge fluxes up and down with the temperature, causing pressure changes which, without a doubt, cause bone pain. The pressure changes also fuck with my head. Not the cancer bit, although I do get headaches on and off but not enough to warrant calling my onc in a panic but I think just the common folk headaches. With all that said, and despite the very real logic behind it, the first thing I think of is: Is the cancer progressing? That's the one thing once you get cancer that is a component that nobody understands, unless you're also living it or have had cancer. Cancer, just as the rogue cells hide undetected in our bodies, it also hides in the back of our minds slowly eroding our sanity, whilst those around us have absolutely no idea just how much it impacts our every day, and every moment of our lives. It truly is the biggest as*hole invader in ones life.

Soooo, if you're still reading at this point, you're essentially pretty much caught up with much of my life! I wish I could say I'm travelling constantly or sitting on a beach or on a patio in some tropical or desert climate, but that's not how life works. I'm actually busy watering the nine hundred and eighty two plants I bought, lol. Just kidding:) BUT I am leaving on vacation this upcoming week and I am planning on zoning out, and enjoying every single second of warmth, sunshine, my hubby, a pool, and just being alive in the moment...in a state with legal cannabis:). BRING IT ON I CAN'T WAIT ANY LONGER!!!!!!!

Ok, does anybody else just smile when they see bright and beautiful flowers too?? From the smell to their individual uniqueness...they make me happy:)


The start of my veggie garden. Right now it looks a lot like planters full of dirt but we got an AMAZING yield last year, so here's hoping it continues this year (I'll post more pics near the end of the season to show my yield...stay tuned...I know SUPER exciting, haha). Decided to do lettuce, tomatoes, radishes, beets, carrots, zucchini's, peas, potatoes, and Hungarian peppers. Now to watch them grow!!!


It was SO nice to get back into skiing!!


It really is seriously beautiful in the mountains and you might as well embrace where you live, right? However, I am quite content, ready, and over seeing anymore snow for quite some time.....soooooo bring on the sunshine:)


I can't round off a post without a Lola pic. Seriously love this little dog & all the added craziness she brings into my life;)





Wednesday, 7 February 2018

4 Years

4 years...

4 years ago today was the start of the Winter Olympics. 4 years ago today was also the day that my life got turned upside down and changed the course of everything. My life's trajectory became derailed, uncertain, and my life became scarily finite. 4 years ago today I was diagnosed with MBC. It's almost as if the “old me” died and I had to completely figure out who I would now be. How long would I even be alive for? What would ongoing treatments do to my body and quality of life? And the notorious what the fuck just happened whirled through my head?! How could life change so drastically in one single moment.

Statistically speaking, I have already lived past the typical 2-3year survival rate noted for those diagnosed with MBC. Part of me feels thankful and happy and part of me constantly asks why were others not as lucky? Why am I still here and why are my many friends gone in a matter of months? I know I will never know the answer, but it's still one I constantly question.

My life is different now. The things I find important, and that which I find stressful, pales in comparison to the things I now allow myself to stress about. Death is the greatest fear and when I look at the things that I used to worry about, or listen to others daily struggles (late to work, spilled coffee, stuck in traffic, I have a cold, work was too busy, etc..) I simply laugh at the silly and mundane nature of these “troubles.” It amazes me that we live in a world of opportunity but the only REAL barrier to achieving what we want is truly our health. If you want something bad enough you go and get it! Don't complain but DO. If you're waiting to be spoon-fed opportunity then you are delusional. When death becomes your greatest barrier, fear becomes a relative term.

Every year I am thankful for simply being alive. For being able to watch my nieces and nephew grow into amazing little people. Another year I get to spend with my husband, exploring the world, and simply being in each others presence doing everyday things that I no longer take for granted. Another year that I appreciate just how much my mom has done for me and my family from cooking to cleaning to coming to appointments...no mother should have to constantly worry that they will outlive their child; that eats away at my heart because this disease doesn't just affect me. It affects my entire family and creates a type of stress I can not even put into words. The constant uncertainty of when the other proverbial shoe will drop. It makes you more humbled, but also scares the complete and utter shit out of you. As much as having MBC has opened my eyes to the fragility of life it has also made me more aware of appreciating even the tiniest of “good” that may shine through in midst of the storm of some pretty crappy days.

4 years I honestly didn't think I might make especially after I first heard I had brain mets. Cancer in my brain truly made me think that my life span would be much shorter, but yet here I am. My brain, as of my last scans, is clear. Essentially, nothing noted to be growing. Obviously, I am aware that this can change ever so swiftly, but RIGHT NOW I am good. I am thankful to see the snow fall outside, to see every giggle and smile, and embrace every big hug and kiss my nephew places on me; a milestone when he was born just over three years ago, I never thought I would be alive to still be apart of. To watch my middle niece excel in gymnastics and basically any sport she tries. She reminds me of my youth and the times my body could do just a little bit more. To seeing my oldest niece become a teenager and turn into a smart, empathetic, and kind person. These are the things I am thankful for. These are truly the only things that matter to me.

At this point in my life I really just want to see changes in respect to MBC. I don't (I CAN'T) keep watching so many beautiful people continue to succumb to this disease, leaving behind children, spouses, friends, and family too soon. Something has got to give. We need better therapies that can extend our lives. We need government and pharma to hear us, and collaborate with patients to help change the landscape of this disease. We need to hold them accountable as sadly this could be any of us. To understand that delays in access to treatments are killing Canadians. I don't want others to need to care when it's them or their loved ones because at that point it may be too late. Nobody wants to talk about stage IV, incurable disease, as it doesn't evoke “happy” feelings or the sense of survivorship and moving on. We, with MBC, don't get that luxury to move on. We are in a cycle of getting scanned regularly with the knowledge that the next scan may be the one that completely derails our life further towards death. Yes, it's terrible and depressing, but yet it's our reality. If we continue to live in our bubble of positivity and ignore those that are dying we are contributing to the problem by being dismissive. Many of us don't complain but simply try to put our energy into living as complaining changes nothing. With that, I truly hope that for all those who have their health today that you can take value away from knowing that you are living a life full of promise and opportunity..something that many, TOO MANY, others never got the chance to. Life is short, but it's up to us to give it meaning.

Just a few (or maybe two dozen) pics from the last 4 years...

This photo may just look like a selfie but this was my first infusion days after finding out my cancer had recurred and was no longer deemed curable. Smiling amidst the never-ending tears...
 ...
Watching these girls grow into beautiful little people has been a privilege in my life

Scans..scans...and more scans! The life of a metster and of never ending appointments and waiting. Waiting has become a part time job! Not having control over your own life, and sitting in waiting rooms with people twice your age doesn't evoke a warm and happy feeling...such is life

My supportive hubby. Love him and his patience with his 32yr old menopausal wife, lol. This was not the life either of us envisioned but I think we are making the most of it and I would never choose to do life with anyone but him:)


Another New Year and just another day to celebrate life with those I love the most

Oh this BOY!!! He has gone from this tiny babe to a 3yr old who is sweet, strong, and loves to be naked, lol. I feel immensely blessed to continue to watch him grow into a toddler I adore

Enjoying life in Hawaii


Perfection on vacation

1st dose of Xeloda..I am beyond thankful that this chemo has controlled my cancer for 2.5year now!!!!

Oh Tykerb...this is how I felt for the two years you destroyed my guts and left me in so much pain. I don't miss you. At all!!

The joys of never-ending scans. In between living it is the pause that makes me stop and realize how quickly everything can change 

Having the opportunity to go to a Blue Jays game 

My mom. The most selfless person I have ever met. I am beyond thankful that I won the mom lottery with this one!!

Alive to do silly pics like this, lol

Just hanging out in Central park

Central Park, NYC

Never lose hope

NYC landscape

Going to Broadway! 

Self explanatory...its my husband people don't worry

My support

I bought a dog in the midst of these years...I love her:)

Always enjoy life...in moderation...or just do whatever makes you happy:)

Treatment #2 of Herceptin. Thankful for this life extending therapy


And just live as noted above:)

Friday, 26 January 2018

Happy New Year!!!

Now here I am in 2018 reflecting on how much happened this past year and looking at what 2018 has in store... I had the highs of some amazing opportunities and trips. 2017 took me to Mexico, Philadelphia, Toronto, and New York. Plus, I'm still alive so that's by far the best component!! The lows were also soul crushing...the deaths of Mandi, Beth, and my closest friend O, and countless others, continues to be that part of my life that I compartmentalize, but constantly think of and try to keep to myself. The heartache and sadness that these deaths have created has made me take steps back from some online groups on occasion because at times it becomes way too much to take. The deaths don't stop. It doesn't get easier. It never gets easier....if anything it gets harder and harder because the realization that nobody gets out alive from this gawd-awful disease only becomes more apparent. This is NOT normal, and we continue to desperately plead for increased research funding, and a faster/more transparent process to approving new and innovative therapies in this country. There's so much work to be done and the longer I live with this disease the more I realize the many roadblocks in our way, and how government and pharma's delays in approving new cancer therapies, directly causes death. People with advanced cancers can NOT wait years for drug approvals to take place. There's a simple formula that can be used to understand what these delays mean....Delays in getting treatment therapies to those with terminal cancer equals death. That's it. I live in Canada and this is NOT ok.

This year I refuse to let cancer stop or limit me from doing all the things I love. I took a couple extra weeks off of my chemo over the holidays simply due to toxicity. I feel like I haven't taken much of a break for quite some time so once the drug was out of my system I was completely shocked as to just how good I felt! It's bittersweet as I felt AMAZING (essentially I felt like a normal person) and I realized just how much the chemo effects my overall energy levels which I assumed was pretty decent before, but once I took the break I realized the actual impact it has had on my overall wellbeing and quality of life. I envy those who can wake up day in and day out, go to work, and then manage their home life, and then go to bed and repeat over and over again. I suppose I look at people and just think to myself; "You are so damn lucky," and yet they have absolutely no clue just how lucky they are, and what a privileged life it truly is to have good health. Oh well, I'll take sporadic moments and continue to be thankful that things aren't any worse and that I am only on my SECOND line of therapy since 2014. That's a pretty big silver lining, especially because I know many don't even get to live this long with MBC.

This past year for Christmas I decided to get my nieces an "experience" as opposed to gifts, although I did still get a couple little things as well, lol. We went up to the mountains and stayed in a beautiful hotel, went swimming, ate out at some amazing restaurants, and went skating. For anyone who knows me, they know I am big on safety...ok, impulsively persistent with wearing helmets for basically any sport that could cause a head injury. Therefore, when we went skating and I realized they didn't have helmets I thought; you're in this beautiful, picturesque place and now you're not going to skate due to not getting a helmet, but you have cancer?! Hmmm....I took the risk and, with all things as of late, I forgot that I'm much older and not as flexible as when I was a child. Well, when I made one more loop around with nothing but utmost confidence (as once you face your mortality the things that scare you become less and less) I caught an edge and essentially fell flat on my face. I mean Flat. On. My. Face. Yup, I didn't even have time to put my hands out to cushion the fall, and the ice ate my cheekbone. To say it hurt would be an understatement as I hobbled up and then realized the vision in my right eye was completely blurry:/. That was the end of skating and my public service announcement is: ALWAYS WEAR A HELMET. Anything that requires a faster pace then skipping just put a helmet on...trust me you'll thank me later:).

After a great weekend away I came back to have my quarterly scans, and the first set of scans of the new year. I am ECSTATIC to report that my brain has "nothing going on up there" as per my onc, lol. I have to agree there's little going on up there, other than an AWFUL memory and a limited ability to concentrate and focus on virtually anything. My sternum showed some metabolic activity but it continues to decrease which is also a major thumbs up. I would really, really, really love to be able to worry less about these scans. I suppose I continue to tell myself if I'm feeling relatively good then the results MUST be good. Yet, after knowing so many women go from no evidence of disease (NED) to hospice in a matter of months, I don't think these scans can truly become "easy." Ever. However, today I'll take it and continue to enjoy this life that I am lucky enough to live, and I promise to continue to learn from my many metastatic friends just how to really do life. Happy 2018 everyone...here's to good health....everything else is simply secondary...

There is something so peaceful and beautiful about a snowy mountain landscape. This year I want to enjoy the beauty that is literally right in our backyard...Tourism pitch: If you want a picturesque/ski outdoor vacation then head on up to Banff:)

My nieces enjoying the pool...it is near impossible to get a pic where everyone is actually looking at the camera, so this was almost a win!

This made me laugh as this is how focused we are when someone is taking a pic...as in we are literally in our own worlds. The tree and the staircase in the background are pretty, so let's just focus on that.

Fairmont Banff Springs...this view never gets old

My niece skating

Aaaand not skating anymore. That side of my face that's swollen then turned into some lovely shades of purple and blue the days that followed...Beyond thankful I didn't break anything in my face!!

PET scan day!!!! AKA: the most stressful waiting period known to man!!!!



Aaaand post scan results & how I felt:) Welcome 2018..let's do this...but please be kind!!!





Monday, 11 December 2017

Long Overdue Update


This post is long overdue, and I realized I should probably give a little update. I notice when it has been too long as I start getting random messages from people, essentially the inquiries when you write a blog about living with MBC have to do with; are you still alive?? Ok, people aren't quite that blunt but I do get more messages just about "checking in" and "haven't heard from you in a while," lol.  I appreciate all the love I have received through the years from friends near and far and even complete strangers, and for that I feel immensely thankful. I'm hoping that after this post I can get back into regularly blogging because quite honestly I have missed it! With that said, here is an update.

The last little while has been oddly busy. I have had two PET scans and two brain MRIs since my last blog post, and have continued to watch so many, TOO many, beautiful people pass from this awful, nightmare of a disease. Survivors guilt is real people!! My scans are good and I'll go into slightly more detail below, but at times repeatedly posting "I'm stable" and doing well in the midst of watching so many friends suffer in ways that many couldn't even fathom, makes me wish I could simply spread my stable results on to those desperately trying to grasp onto any lifeline. The MBC community continues to grow sadly, and with that comes more and more losses. That's why Rethink Breast Cancer's new initiative excites me and many others living with MBC. Rethink is looking for individuals with MBC, advocates, caregivers, and health allies to join an MBC advisory board. If you want to join this committee please fill out this application by December 22nd: https://goo.gl/forms/JtAOkjcl38N5MF5w2. The one disclaimer is you must be a Canadian resident. If this is something you are interested in here is a little background behind the vision of what this MBC advisory roll would entail from Rethink Breast Cancer's FB page:

"Vision:
Rethink Breast Cancer’s MBC Advisory Board will help empower Canadians living with MBC through providing education, advocacy and support that addresses their unique needs. Comprised of MBC patients, caregivers, health allies and advocates, our MBC board will represent all people nationally who are concerned and affected by MBC.
Objective:
Help Rethink Breast Cancer to Educate, Advocate, Support and Empower those concerned and affected by MBC
Role:
• Advise Rethink Breast Cancer as it expands and enhances its activities to assist people living with metastatic breast cancer and their caregivers.
• Help inform Rethink’s annual priorities for MBC initiatives.
• Give some transparency and accessibility to the development of MBC government policy by ensuring the voices and values of patients are heard.
• Work on specific MBC projects as assigned
• Share Rethink’s/advisory board’s MBC priorities and campaigns with networks
• 2 year term"

Now in regards to treatments, these meds that I have been on for TWO years this past July are still working!!! Essentially, the targeted med I have been receiving (Tykerb also known as Lapatanib) along with my chemo (Xeloda also known as Capecitabine) became no longer tolerable. Now I have tried EVERYTHING to manage the GI side effects, but honestly they just seemed to have gotten worse and worse. I would wake up at night with severe abdominal pain. I mean to the point that I would be sweating in pain. At first it would occur only a couple days a week to then happening more often then not. I kept telling myself that the med is working so just “tough it out,” but truthfully I reached the point where I was taking this med less often then I was actually taking it due to the side effects. This medication targets the fact that I am HER-2 positive. HER-2 is a protein, that when amplified, essentially promotes cancer growth. Therefore, you MUST target this with targeted therapy because chemo alone will not stop the cancer and when not targeting HER-2...well...it's aggressive and will lock down new real estate in my body in a jiffy. And...well...I really like being alive so this where I reached a crossroads.

I do feel like I tried everything humanly possible to tolerate Tykerb longer, but after 2 years of feeling like I had food poisoning most nights I had reached my breaking point. As well, although my scans were stable, my sternum was noted as being active again based on my PET report at the end of July. I think this was likely due to my wishy washy compliance of taking Tykerb as I had to take frequent breaks or risk getting dehydrated and sicker due to the side effects. There was no win win situation, therefore we decided to part ways with Tykerb and go back on Herceptin infusions every 4weeks. I received Herceptin the first time I was diagnosed with cancer for a year and then I was on it for 16 months after my metastatic recurrence and truthfully I have always found this med very tolerable and relatively easy, so it was kind of nice knowing that I could sleep through the night without worrying about waking up in the wee hours in pain. As well, since I didn't technically "fail" Tykerb this hellish, pain promoting, GI destroying crap of a med it means it is still something I can resort back to in the future:). I'm oddly happy that this option is still there, but even more happy that it is not something I need to take right now and hopefully not for a long time.

The only reason I tolerated Tykerb for so long was because the one benefit of Tykerb over Herceptin is the fact that it is a small molecule that is known to cross the BBB. There are very few drugs unfortunately that can cross over and this has always been one of those sites that continue to scare me. My brain is pretty darn important, but I wanted to do everything humanly possible to prevent more mets from popping up in my brain, and I think that was a huge part as to why I didn't want to switch earlier. With all that said, I am hoping Herceptin, which is a larger molecule and in the past was thought to not be able to cross over the BBB, will still be able to cross. Now the reason it may still have effectiveness on my brain is because I have already had 3 established brain mets in the past, along with targeted radiation on my brain, all of which would have already disrupted my BBB allowing larger molecules to get through. Once your BBB is disrupted it never really “heals” to its pre-cancer invasion status. Therefore, I am really hoping Herceptin gets through and keeps my brain uneventful and free of any foreign little invaders... As of my last scans in November I am very happy to report that this combo of Herceptin and Xeloda are continuing to work, and work well! My brain has remained clear and my bones stable, including my sternum which no longer shows any metabolic activity as per these last scans in November, and the last sets of scans for 2017!!

These couple random pics I post are a reflection of how my brain seems to work nowadays...scattered, forgetful, & consistently random;)

Throwback to the summer and back to Herceptin. Honestly, I was just so bloody happy to part ways with Tykerb!! Yaay to anything but Tykerb!!


I simply love the visual step-by-step as to how to put on a hospital gown with photos. Maybe the gowns suck?? 

I couldn't resist not posting this pic of Lola. Everyone remember the puppy we bought that I was losing my sanity with early on?? Sanity restored and I ADORE this sassy fluff ball!!!


Her 1st "haircut"