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" 

Loss

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 reality...to 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: https://facedwithmymortality.wordpress.com/

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 nausea...to 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 system..as 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:)

Goodbye Mandi

How do I even begin...how do I express how I feel when I can't even explain it myself? Mandi (http://www.darngoodlemonade.com/) is gone. She went to see the ocean with her husband...to 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 hearts...it'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.

Three Years Later...

Today marks THREE years since I was diagnosed with MBC. I think this acronym for metastatic breast cancer, AKA: MBC can double over as meaning: Major Brunt of Crap! I will never, ever forget this day. It was the start of the Winter Olympics, and also what would be the start of being in treatment for the rest of my life. Three years with MBC is pretty darn good. I mean to still be alive. Not so normal to think I'd be thrilled to still be alive at 31 when most in society don't need to even remotely entertain this thought. The relief that came from hearing that this current therapy is continuing to make it hard for my rogue cells to multiply, & infiltrate my vital organs makes me indescribably happy. I couldn't have gotten better news on the eve of my three year MBC anniversary.

I think back to this day three years ago, and realize how much has happened in the past three years. How many, if not most, of those days were good, fulfilling, and not plagued by this disease. I also think back to all the things this stupid disease has taken from me...my ability to have children...my career...and quite simply put every ounce of innocence I ever had left in me. For all of us with cancer we can no longer get a cough or an ache without analyzing every single aspect of what may be causing it, the duration that it has lasted for, and without our minds instantly going to that one dark place: cancer progression...and one step closer to death. I so longed for those days where I could have an ache or pain that would simply go unnoticed, left in the back of my mind, where it remained a completely innocent nuisance.

I would love for people who DON'T have MBC to understand that simply staying alive is essentially a full time job; constantly trying to balance and keep the cancer at bay, while also trying to manage the toxicities caused by chemo and targeted therapies. At this point, I feel these drugs accumulate quicker and quicker leading to toxicity faster and faster which then leads to feeling generally crappy. After the news of my great results, I was also told to stop both Lapatinb (Tykerb) & Capecitabine (Xeloda) for a couple weeks to allow things to settle down a bit. My hands and feet are swelling like crazy, and I feel like a good portion of the skin on my feet has come off. Don't worry I'll omit the ugly feet pics in this post;). Yes, it's painful to walk and use my hands. They kind of look like acid burns, and I mean chemo is toxic, and this is one of those common, crappy side effects. Secondly, the targeted therapy Lap, has seriously pissed off my GI system. I have been waking up at 3 and 4am with awful abdominal cramps!! I HATE anything waking me up, but pain tops the list of piss off ways to be awoken. Obviously, there's always the option to switch treatments to better manage quality of life, but I can't bring myself to do this when this combo is working so phenomenally well!! This line has lasted me longer then the very first line of therapy I was on which makes me very happy as the farther along you go with treatments the less likely the next one will work as long. If I switched treatments this line of therapy would still be an option I could go back to as I wouldn't have technically "failed" it, but like I said above, I don't want to jinx myself, especially knowing the few options available for brain mets and right now my brain is super chill (I think my brain has become permanently stoned, along with the cancer cells...they've become VERY lazy and that makes me ecstatic:)).

Looking back at this day three years ago I never could have imagined then how these last few years have evolved and unfolded. That day my world came to a screeching halt and my future was no longer guaranteed. I was 28 and told I was terminal but that we could still get "years" as I only had it in my bones at that moment. Fast forward four months and I learnt it was in my brain. Suddenly, I knew this was one of the worst places for it to spread to and I wondered if those "years" would suddenly start to dwindle down. Then as the months went on and I started on Cape and Lap and scan after scan continued to show improvement, I slowly started to realize that I wasn't dying anytime soon!!

Watching so many of my beautiful friends deteriorate, progress rapidly going from no evidence of disease to death within months keeps me focused on the reality and nature of this disease. It makes me question WHY I have been so lucky to last this long, while others have not. Because of this I have dedicated my life to advocacy. For as long as I am humanly able to I refuse to stop until we make this disease better for those going through it, having equity in care for EVERYONE going through this, and ensuring nobody ever feels alone and isolated because of it. Life can be, and is, more fulfilling for me today then it ever was pre-cancer.

Three years ago today I was lost, completely broken, and felt as though my life was already over. Watching others laugh and live carefree upset me because I just couldn't fathom why this had to become MY life, despite "doing everything right." Today, I am here to say that I am happy, grateful, and feel far from broken. Despite the diagnosis, the hardships, the pain, the losses (by far the hardest component), the never ending meds, GI issues, nausea, diarrhea, HFS, and scans; I'm alive...I am deeply loved...I have a perfect family...I have remarkably supportive friends...and I still have the ability to be a productive member of society through advocacy for MBC. Life may get crazy, and I know this treatment will eventually fail me, but TODAY it's still effective and I don't need to go there and worry about it. I'd have to say my life is truly beautifully imperfect and I wouldn't ask for anything more...except for a cure for cancer...that's when life would be perfect in every way imaginable, but until then beautifully imperfect works for me.