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 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 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 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'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 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 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: 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:

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.
Help Rethink Breast Cancer to Educate, Advocate, Support and Empower those concerned and affected by MBC
• 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'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" 

Wednesday, 23 August 2017


Loss. Watching one of my best friends suffer from MBC was one of the hardest things to witness, yet it taught me about resilience in the face of major adversity. It taught me that grace was something you either possessed or you didn't (which for the record she possessed like nobody else). And it taught me about hope. Of always wanting more from this life and deeply yearning for not just a miracle but for some sense of calm and reprieve from all the pain, the tears, and the hardship. My beautiful friend 'O' taught me all these things. As you watch someone you love endure more in this life then you ever thought possible, it starts to etch away at your heart. Slowly but surely, the optimism starts to fade and turns into a hope seeded in desperation. When I watched 'O' handle every single bad hand that was dealt to her I tried to fathom having an ounce of her strength and tenacity through it all. The day she passed away was the day a piece of my heart permanently broke.

In order to understand the depth of what I am even trying to say you have to know a little about this beautiful soul. She embodied an infectious personality that made it irresistible to not be around her. We could laugh for hours upon hours. One of the things we always talked about was essentially how on earth did we both end up with MBC?? We both lived respectable lives and while others were out partying during their teen years, and into early adulthood , we were focused on academics and on the long term goals of what we wanted in life: a career, a family, etc.. Yet, those that spent the majority of their lives using their bodies as a personal trash bin got to live...relatively unscathed by their recklessness. Ok, I will say that the extent of our rebelliousness came in the form of speeding...not always...but enough for photo radar to catch us at times, lol. We always wondered why some were so lucky, but then we reckoned that we just must have had bad luck. Really, really, life shattering type of bad luck. We would say it and then simply move on...what other choice did we have in the matter?

Talking about life it was clear to the both of us that we collectively felt like our lives were perfect before MBC slithered its way in and tried to erode the beauty we had built. However, cancer could not destroy the love that one feels towards another. It could not steal the ability to still smile and laugh. To love with every ounce of our being. I think back to our fun days of pottery making, and for her openness and willingness to take part in my "crazy..." by this I mean every artsy fartsy activity I invited her to partake in... from making Christmas ornaments to trying to figure out how to use a selfie stick, whilst joking that an engineer should most certainly know how to use this special "pic stick, lol."

I even think back to one of her more recent hospital admissions. Prior to getting to the hospital we stopped to get some good food, and she accidentally purchased an alcoholic beverage as we were both too naive to realize that apple cider had alcohol in it until we saw the alcohol content and promptly returned it, lol. We laughed pretty hard thinking that it would have probably looked a bit sketchy to head to the hospital for pain control whilst intoxicated, hahaha. I wish our ignorance towards alcohol could have paralleled our ignorance towards this disease. But it didn't because we both knew, far too well, that this disease was like an evil monster that inhabited our bodies and we were at its mercy. You simply try to put the beast to sleep, but with MBC we knew far too well that it was always a matter of when, and not if, it tried to destroy us. Trust me, we both knew what it meant to live this life as we knew far too many taken too soon from MBC. The balancing act of naivety contrasted always with our stark the balancing act of trying to live as if life was never ending, all the while our bodies were slowly being overtaken by a disease that would kill us.

'O' was by far one of the kindest, funniest, most intelligent, personable, honest, and loyal friends I have ever had the privilege of having. She was a wife, a daughter, a mother to a beautiful toddler, a sister, a cousin, and a friend that everyone would gravitate towards. It's hard to fathom the ripple effect of her loss and how many people, from so many parts of the world, have been devastated and left with broken hearts. She was like no other person I have ever known in my life...she will forever be irreplaceable, but will be loved and remembered forever. Love you my friend. Xoxoxox

If you would like to read more about my amazing friend, and her life with MBC this is the link to her blog that she updated regularly:

Tuesday, 20 June 2017

Update...Life... And Puppies!!

Wow...its been a while. Time has seemed to have flown by since April onwards. How is it the middle of June...halfway through 2017 already??!! I went to the the annual Living Beyond Breast Cancer conference at the end of April in Philly and had a wonderful time learning and catching up with friends:). However, what has kept me very busy has been my most recent purchase....a PUPPY!! I'll get back to the puppy shortly;).

Scans this year have been uneventful and I am happy to say that next month, July, will be two years on this current treatment combo! TWO FRIGGIN YEARS!!! This is amazing and I am grateful, appreciative, happy, and completely aware of how "lucky" I am. BUT, yes there's a but,  these drugs never get any easier to take. Every single cycle I tell myself maybe his one will be the one my body finally gets used to, lol...ya...nope. The HFS...mouths sores...the the stomach cramps...heartburn...diarrhea...GI issues galore...ok, I'm complaining. Every single time I try to tell myself how lucky I am I realize that I don't need to sit around and sugarcoat the reality of living with MBC. I suppose not having a day of diarrhea or stomach cramps is a day of total bliss in my books.

Now onto the more important aspect of this post: the PUPPY!! I had always loved these tiny little furry fluff balls and then I met this one and I knew she was THE ONE. Her name is Lola and she is a high energy, feisty, tough, crazy, and simply irresistible pup. She's also got my attention span, so collectively we seem to wander the world in a daze of distraction, lol.  In fact, much of my absence from social media has been because of the non-stop busyness this two pound ms. Lola has occupied me with. She had a rough start as she suffered a seizure days after bringing her home and she most certainly has a LOT of fight in her, lol. A lot. As per the vet: "I have never seen a dog of this breed have absolutely no fear." That's Lola in a nutshell. I also learned that although I can deal with sick people I am NOT good with sick animals, and also learned that veterinary care may be similar to the American healthcare in it's bloody pricey $$$$!! Now we are trying to rectify the non-existent relationship she has with our 6yr old dog Max. After bringing in a dog trainer to try and help us understand how to bring down the DOUBLE baby gates so our dogs can be around each other, as opposed to the maximum security penitentiary we have created to keep them apart, we learnt that our older dog has some major fear issues which is why he wants to attack anybody who enters our home; including Lola. Lola doesn't stop wanting to play and keeps jumping at his face and Max being the old man dog he is wants none of it, so he growl, nips, and I'm sweating with back to back hot flashes as he will most certainly kill her (simply due to her size) even with a nip. After the trainer took a brief history,she essentially told us that our older dog is the way he is because of my first diagnosis of cancer which occurred not too long after we got him:(. She said my scent would have changed from chemo, and my appearance as I lost my hair the first time. He was traumatized. Truthfully, when she said this I almost started crying right there. I mean...seriously??!!! The stupid disease has not only impacted my family and all those I love but also our DOG??!!!! I couldn't help but wonder if this second puppy would also be somehow "traumatized" by me which is the very last thing I would ever want. I waited for the trainer to leave before I went to the bathroom and cried my eyes out.I'm sick of the  constant losses...the consistency of all the things in life this disease erodes and destroys. I'm sick of it. A part of the reason I got the pup was to bring some more carefree fun and joy into my life. I love advocating for MBC, but I also want to LIVE and enjoy life without the constant cancer halo hanging over my head like a dark cloud that goes everywhere with me. Then, I get the pup and learn about how my older dog is fearful and scared due to my initial diagnosis almost 6years ago?! Pretty soon they'll tell us to take our dog to a damn therapist it seems, lol.

So, as of now, I'm loving this cute little fluff ball, feel guilty as fuck for the way Max turned out, and am desperate to get rid of the baby gates that segregate our dogs like we are living in a maximum security prison, THEREFORE anybody reading this a dog trainer, dog therapist (I'm sure they have those too as they have chiropractic and just about everything else in the world for dogs), or just someone who can offer any insight into how to get two dogs to live harmoniously together, I'm all ears! I typically write about wanting more for cancer research, and trust me that'll always be my number one, but right now a dog trainer will do.

Now I am going to shamelessly post pics of my new pup Lola. Enjoy...

"Hi, my name is Lola and I am super fast, think I am 100lbs even though I don't register on our home scale, have pipes that can pierce my owners ears, but I love to cuddle, bite hair, bite my new brother constantly, bite my owners feet, and walk on my two front feet like I am a member of Cirque du Soleil."

This was when we first brought her home..she melted my heart. I mean seriously that FACE & the FLUFF!!

Just to show you how tiny she is

Her ears flopping in the wind, lol

Bringing her home from the vet post-seizure. Seriously, that face though??!!

Yes, she has an outfit on and before you judge, she actually calms right down when she puts on her ELLEN attire, lol. It's like a thundershirt for her and pure cuteness to watch on my end, so a win win for both of us!

That face!!

I need more memory on my phone at this rate!!

These are our dogs. I LOVE Max as he is a wonderful dog if he knows you, and as long as you don't come into the house as he does not like strangers...this is Max's kingdom and we just pay the bills, lol. One day we will live harmoniously:)

Tuesday, 11 April 2017

Goodbye Mandi

How do I even do I express how I feel when I can't even explain it myself? Mandi ( is gone. She went to see the ocean with her have a nice vacation whilst dealing with stage IV, but she never made it back home. How? why???!! This disease takes and takes and takes and takes and.... how much of this can a person withstand in ones life before they say I can't continue to watch these deaths continue!!! For those of us living it; we are begging, pleading, and desperate beyond what one could even fathom. But for those never personally affected it remains an afterthought. And THAT, that nonchalant "I'm so sorry for your loss," followed a day later by complete normalcy as if this is a normal part of life; that makes me realize they just don't quite get the magnitude of this issue. They've moved on, but I haven't! I'll tell you what I'm feeling right now and maybe some people won't like it, but I'm not writing to please anyone...I'm writing because I can't continue to watch people I care about deeply die, and die, and die, while the rest of the world throws a measly "I'm so sorry for your loss." Your words are no longer enough. We NEED ACTION!! We are DYING!!! If you're sorry then for the love of god HELP US!!

 In the last few weeks alone I have had 5 friends pass away...some I had the pleasure of meeting in person and others I simply knew through our shared experience of living with this disease through social media. Another entered hospice. One must understand that the relationships forged are truly unlike any other friendships. We are collectively facing our mortality and we simply get it. We are aware of time like you could never even understand. We make plans and execute them ferociously because our clock is ticking and we are ever so aware. We take trips when in questionable health because it's not getting better and if we hold off we may never even get the chance to go. That's our reality. A reality so distant to many that they can't quite wrap their heads around this type of uncertainty. Morning, day and night we think of this disease. We try desperately to get so much out of life, whilst watching others simply waste theres. How many people lose their young friends at a rate like this??!! This is not ok, and I am at my wits end with complete fu*ken anger for the world's utter; "I could give a shit" about this pandemic attitude, but I am also tired and completely heartbroken because they're all dead and dying. It continues to happen. Everyday. We advocate at our own expense and we die. Nobody is saving us and that's what hurts. There's so much we can do, but when our healthy counterparts simply state; "I'm sorry" or "I'll pray for you." That's NOT ENOUGH!!! I don't need more prayers I need a fu*ken cure. Nothing else. So please dig deeper...educate yourself about this horrendous thief of a disease that steals our vitality...our youth...our careers...our friends...and ultimately our lives. The only thing that can save any of us is research.

In just a couple weeks I was so looking forward to seeing Mandi in Philly again at the annual Living Beyond Breast Cancer Conference. Last year she cried because she didn't think she would be alive to attend this year, and sadly her fears became her reality. She knew. I simply couldn't entertain that thought. Now I have no choice. She's gone. I was excited to wrap my arms around her and give her a big hug in just a few short weeks. Last year we shared a room, explored Philly, and talked about our lives...and our fears. The last time I saw Mandi was at the airport in Salt Lake City. I was continuing on home to catch a connection and Mandi was home. I truly never thought that that would be the last time I would see her. Just like that another life is snuffed out and the MBC community collectively cries and loses another piece of their's just that our hearts are so broken it's becoming harder to pick up the pieces. But we will. We will continue to fight for more, even as our health continues to decline because otherwise who will? I promise Mandi and every other beautiful soul we have lost that I will continue to advocate to the best of my capacity because they deserved it. They fought for my life and I will never stop fighting for there's...even if their lives are now just a memory. I am so sorry we failed you my friend. I'm so sorry we couldn't save you and now there's nothing we can do to bring you back.