LBBC (April 8-10th)

I felt privileged to have been picked for the LBBC (Living Beyond Breast Cancer) Hear My Voice Advocacy Training Program for 2016! LBBC hosts a conference every year in Philly for metastatic breast cancer patients with loads of info from new and up-and-coming treatments to breakouts in relation to simply living well with MBC. I was mostly excited to finally meet many of my metster FB peeps in person:).

My trip started off with flying down. Not gonna lie, but since being diagnosed with mets and realizing my body is like a darn treasure chest with the absolute crappiest of prizes, I was a little worried to fly alone. With MBC you really never know when shit will hit the fan, and the worst time for that to be would be thousands of kilometers from home, away from my family, and in the United States!!

Once I arrived in Philly it was dark and late into the evening, so I went to grab a cab. The kind gentleman quickly grabbed my bags and got it loaded into the cab. Once we were off we started talking. I asked about a neighborhood a friend told me to avoid and asked if it was really that bad and he stated, and I quote: "Even if you asked me to take you there I would never take you there." Ok, fair to say it's an area to avoid. He then proceeded to tell me how many cabbies had been shot to death that month and that everyone in the city pretty much packed a loaded gun:). Welcome to Philadelphia to this completely alone, clueless, cancery chick from Canada;). I appreciated getting to the hotel safe and sound and was ready to lock myself in the room for the night till my roomie Mandi showed up the next day.

I was so happy when Mandi arrived the next day. We had chit chatted frequently before meeting in person, and she was every bit the wonderful person I had assumed her to be, plus a wonderful roomie;). I loved going out with some of these lovely ladies in the evenings. One evening we went out and had some great food and then went walking back to our hotel. The streets were lively, people were out on the weekend enjoying themselves, and us ladies were happy and enjoying each other's company. Then one of my metster friends shouted out to a group gathered on the street: "we love your energy" to which we got a loud, "FU*# YOU." Hmmm...the city of brotherly love became a bit hostile, but the best was yet to come as us metsters stand our ground, and 'J' shouted back: "We all have terminal cancer you fu*%#n asshole." Oh, I so love these ladies:). As we continued to walk back we saw a random shop for psychic readings and it was only $5. We joked if we gave them $10 if they would potentially give us a better future, lol...we chose to keep walking.

The advocacy training was an educational and informative experience that helped empower me to give me the tools needed to further my advocacy work in regards to MBC. However, it was the other women and a man (yes, men get breast cancer too), whom all had MBC that empowered me to make my voice heard. What many people don't understand are these individuals were some of the most amazing people I have ever met in my life!! They were smart, strong, and insanely inspirational. We spent most of our evenings out for dinner, chit chatting, and laughing hysterically. I felt as though I had known them my entire life. This dreadful disease had brought us together and created a bond that I will forever cherish. You see, this conference and advocacy workshop helped to give me the tools needed to be effective in my advocacy work, but the people I met fuelled the fire within me to push myself to enact change because this disease suddenly became deeply personal. This wasn't just about me, but the many people I had met and laughed late into the nights with. My friends were dying and I would do anything and everything I could to help in any way humanly possible. I don't want any of them to suffer and I certainly don't want to keep watching my friends die. It's too much and insanely surreal to have to keep hearing about young mothers leaving behind their babies because of a disease that has not seen increased survival rates in over 20 years, while the rates of MBC in young women has actually INCREASED!! That's NOT ok!!

On the Saturday, the founders of MET-UP ("MET UP is committed to changing the landscape of metastatic cancer through direct action. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer"), had organized a peaceful protest to essentially show the reality and the desperation of our plight. The weather wasn't exactly cooperating as it was cold and raining, but that certainly didn't stop any of us from walking the streets of Philly. Once there, numerous individuals spoke...remembered the many beautiful lives we've lost...and then many of us laid on the ground while a bell rang 110 times to indicate the number of deaths every DAY that are attributed to MBC in the United States. 110. If this number doesn't bother you then what will (I feel like a broken record saying the same thing over and over)?! The statistics essentially show that the number of individuals in the U.S alone that die from this disease every year is equatable to the number of deaths that occurred at the height of the AIDS epidemic: 40,000!!! As well, according to the Canadian Cancer Society, 14 women die from this disease every single day in Canada as well! Yet, much of the world is still living under some fabricated notion that breast cancer is "curable" and "beatable." Sadly, stage IV is NOT. Very little research goes towards studying metastatic breast cancer because it's just "too hard" to study. Where are the damn rebel scientists who say, "screw this shit I'm going to help these people." Someone PLEASE be that guy or gal!! We continue to die and nobody continues to care. I feel that when these lives are lost, those that feel we aren't worth the investment should be forced to look every motherless or fatherless child in the eye and tell them; "I'm sorry but your parent wasn't worth saving." Now tell me, who would do this? Nobody!!! But yet they are doing this in the most pathetic of ways by simply not increasing research funding, whilst sitting behind closed doors never needing to see those whom they are allowing to die and the families forever broken by this disease. I have learnt something as time goes on...people don't care about a cause unless it's personal. Until the CEO of big pharma's mother, wife, or daughter is diagnosed and the harsh reality sinks in; then, and only then, will they care and realize the urgency in our plight. It doesn't matter how rich or successful you may be in business; cancer doesn't give two shits about your socioeconomic status, and money sure as shit won't cure you. Our rogue cancer cells don't care about our pocketbooks, and it will ravage the wealthiest of people and leave them in the same boat as us common folks. Once you have mets it's a race against time...a proverbial clock in which you have zero clue as to when it'll stop. THIS is the most agonizingly difficult and torturous as fu*% ways to live. THIS is why we fight. Why we get angry. We aren't bitter, but we demand MORE. Our lives ARE worth saving and I can certainly say that the lives of my friends are most certainly worth saving...these men and women are not replaceable individuals and I refuse to watch them suffer while everyone sits back and acts like breast cancer is some type of sorority with an onus only on "survivors." We, with MBC, aren't survivors but rather we are the dying and sadly what I have learnt is that it takes a LOT of noise for people to even hear us. However, our voices are no longer whispers. We are united and stronger then ever. We are a vocal bunch that tweets (yes I am now officially on twitter too) and uses social media platforms to ensure we are becoming heard. We will not stop until we are heard, our demands are negotiated, and we are given a real fighting chance at actually "surviving." I will not stop until my friends stop dying. Period.

I took an insane amount of photos...sorry in advance...

So lovely to meet the founder of Stupid Dumb Breast Cancer!!! This lovely is amazing in all she does for the metastatic community. XOXO

We were both tired and in a bit of pain to go to the steps where Rocky was filmed, so this had to suffice!

April I am so happy we met...She is simply amazing and such a sweet person!! This was at the Die-in.

Laura...another lovely I feel so privileged to have met in Philly.

Mandi and Marci...Missing one other 'J' in this pic...but I simply adore these amazing women!

Peaceful protest

I love these houses!! So stinkin cute!!

Downtown Philly

The Liberty Bell and me!! Surprisingly not as big as I anticipated it to be!!

Love the art behind us!!

This is for my hubs;)...inside joke, hehe

Flying High...Not Literally:)

I always notice this when flying...the sheer vastness of the world we live in. Of the complexities and intricacies of our lives, and our very existence. I don't know why, but it's always when I'm up in the sky when I realize just how such a tiny part of the universe I really am. How each of us seemingly makes up a 'blip' of the world we live in, yet that 'blip,' that seemingly tiny component, has connections with others that are so deeply rooted and intertwined that when just one of us perishes it causes a ripple effect of sadness and trauma to all the relationships we garner.

When you're flying above the clouds you wonder (at least I do)...what's going on below you, whose having quite possibly the best day of their lives and who is quite possibly having the worst. We know so little about others...their struggles, their joys, fears, and triumphs. The key to each of our "blips" is to make the time here on Earth count, and I mean really count. Imagine if every single individual in this world realized the frantic urgency of life, as those of us with a terminal illness do? We would all be walking around happy, knowingly doing exactly what we were put on this Earth to do. You see, the thing with urgency and feverishly living out the life you truly want is that you end up living the life you were meant to live...the life that leads to HAPPINESS. My definition of success no longer involves anything monetary...it strictly comes down to pure happiness. For people with children, strive for them to achieve joy, fulfilment, and happiness. If they have all three, then count your blessings that your child is a success. (I'm certain I've said this before but my memory is that of a piece of bread...non-existent).

I always wondered why after accomplishing everything I ever set out to do (go to university and get my nursing degree, work in the area I always dreamed, get married, build a house, travel, etc...) why I was still stressed. I was stressed because, although I loved my career, my life revolved around work. I mean I understand we need jobs and careers, but something happened when I was diagnosed with stage IV, and could no longer work. I was forced to reflect on everything. My life came to a screeching halt. There was a big ass barricade in the way and it came in the form of rogue cells going ape shit in my body. Not cool. It took me months to even feel like I was me again...I felt like a hollow shell that would wake up every morning and have the realization that yup I still had cancer. My routine was same old and depressing as fuck...I actually felt like an 80 year old in all aspects...retired, achy, shitty memory, and even shittier vision, but the one distinction that set me apart from my senior citizen counterparts was my inability to wake up early. The struggle is real people!! It was depressing, crappy, and I was lost. I was stripped of my identity and everything that made me who I was. Suddenly, I felt like I WAS cancer. Yup, I felt like a tiny body infiltrated by rogue cells, but the thing that changed as the months went on was I, myself, my life, and identity had gone rogue too. My passions, desires, and all had made a drastic shift, but it was something that had to happen in order to thrive as a metster. I think once I realized that I wasn't going to drop dead at the blink of an eye after my diagnosis, only then was I able to realize that I could still be a productive member of society and had lots to contribute.

People always state things such as, "You're so strong," but what's the other option??!! I could roll over and die, but that's most certainly not the way I roll. The strength that has surprised me isn't so much the physical tenacity needed to go round after round of chemo, but how I have become less fearful of things that, in the past, would have made me embarrassed, quiet, and submissive. Now, I feel like an amplified vocal machine and have no problem stating MY opinion, even if it differs from others. What's the worst that could happen? Someone disagrees with me?? And my cancer won't explode like an atomic bomb, seeding cancer deposits into every crevice of my body?? Ok then, I will speak my mind because the absolute worst thing that could happen to me is quite simple: others disagree. But, what if there's one other person who states that's exactly how they feel, and you have now validated that it's ok to be, and to feel this way. When you think about it, we live in a fairly unrealistic and fake world. We all do. I mean can you say that the way you act at home is the same as in your workplace? Think about it?? If you said YES, then you're either a Nun or a Priest, or you're riding the denial pony into the sunset. I'm thinking my followers fall more into the latter category, and if not well then welcome my spiritual leaders and forgive me of all my sins. Ok...back on track... I will say we hold back certain thoughts because we aren't sure how others may perceive it...but why? We try so desperately to conform to being someone who we inherently aren't simply to please those around us, but in actuality the most important person any of us should be trying to please is ourselves. Once you please yourself happiness follows. Don't get me wrong, as there is most definitely workplace etiquette...without a doubt! For example, when I worked as a nurse there would be times where patient's families would say, request, and do the most absurd, non common sense things you could ever humanly fathom, and in the process curse me out because I didn't adhere to their dietary requests (aka: the gourmet meals hospitals don't have, but of course this was the nurses fault) or grab them the right movie to watch. Yes, very much non life sustaining requests, all the while I'd have two other patients deteriorating, having gotten nillo breaks to shove any ounce of food in my trap, running from room to room while barely staying afloat, and trying to contain an ever so full bladder. In that moment, I could have cursed the individual making requests and replied with; "You know you have two feet that I'm Pretty sure haven't hit the ground (ambulation is important post-op, and I wasn't trying to be mean...I actually wanted them to live), yet as you snack in bed, refuse to get up to the bathroom despite your full capability to do so, but I have likely taken 20,000 steps, and the majority were into your room for shit that demeans the fact that I even went to University for, but yes you are right as I forgot this hospital is the Ritz-Carlton...ya...nope...nopety nope." You know how much I would have loved to have said that to some patients when I used to work with adults...just not even explain anything and simply say nopety nope at stupid requests with a smile and an elevated, cheery voice! Today I would likely also get a hot flash with it! I want to make it clear these were individuals who abused drugs and would continually get readmitted because they didn't care to change their behaviors. I did my part, but I was saddened when an individual had no self worth...my help was a temporary Band-Aid that would be torn off days after release. However, as much as I would want to release my inner volatile rage I know in that instance it would not be appropriate...like at all. So...not working is probably the best decision I could have made, plus I get to focus all my time and energy into things that are so vitally important to me, my survival, and the survival of all my metastatic friends.

If I were to give any advice, from the perspective of someone who has to feverishly live because I have no other option; find your source of happiness. If there was something you always wanted to do, but "life got in the way," well it's your life, so punt the things that don't contribute to your happiness, and tell it to go get lost because you're a busy bee searching for your "happy." Find your happy and I promise everything else will follow...fall into place, and then, and only then will you see just how astoundingly beautiful this life can be.

Just like my necklace states...Live. Can't stop, won't stop.

"NED in The Head is Better Then Being Dead"

I know this sounds like a twisted Dr. Seuss title, but I have to give props to my hubbies friend who cleverly came up with the ending. This gentleman's name ends in "eff," is missing only one letter at the beginning, and rhymes with deaf!! However, I'm all for anonymity, hence why I didn't straight up mention his name;)

I feel I need to clarify my most recent scans as I think that some people got a little confused, but that's ok as I'll explain. I am literally NED (no evidence of disease) in my head as NOTHING was visible on the MRI, however this is ONLY in my head. Don't get me wrong, the meds are working super duper well systemically as my bone mets are chilling and not super excited. I'll try my best to explain, and break this down so it's easy to understand.

When you get a PET scan they inject a radioactive substance that is essentially glucose (the technical term is FDG: fluorodeoxyglucose). The theory is that cancer picks up more of this radioactive tracer and then lights up on the scan...and...BINGO that's the sites where you have cancer. Maybe BINGO isn't the best word to use as we don't win anything good, but rather get a deadly disease, toxic drugs, and...well...essentially nothing else. Cancer lights up like hot spots on a PET scan because it is highly metabolically active. Visualizing the brain is better done with an MRI as our brains uptake a lot of glucose anyways, so it's difficult to visualize mets. I've heard people say that to visualize brain mets on a PET is equivalent to writing with a white marker on white paper: everything just blends in and makes it difficult to spot cancer. Therefore, when I had my PET scan it showed low metabolic activity in my hip and sternum. Plus, after having the previous two PETs showing cancer in my clavicle, this radiologist stated that the cancer was actually in my first rib and never in my clavicle. I like knowing where cancer is residing, and now it's apparently in the rib. It's sad to think that my reaction is simply "oh well at least it's just another bone." Never thought I'd be quite so nonchalant about where my cancer is, but these are the things I need to just accept. Now, back to PET scans...If it showed "high" metabolic activity that would be more indicative of cancer being a pain in my ass and deciding to riot and possibly "break out." Therefore, when it showed "low" activity that simply meant that the cancer is there but simply chilling out....kind of like what I do when I go on a beach vacation!! I plant myself on the beach, with a fruity drink in hand, and simply relax without getting up. Well, that's essentially what my cancer is doing. It's being lazy and not really on the move looking for more real estate!! I LOVE lazy cancer. This equates to being stable mable!! A cancer patients only dream.

Now onto my brain. NED in my head means my treatment is working so phenomenally well that we can't see cancer!!! This means the cancer has been beaten back far enough that it is not visible on the scan. Yaaay!!! This does NOT mean I am cured and cancer free...I mean I wish, but this is the reality that so many of us live with. I feel I need to clarify as when I told a family friend she proceeded to say, "that's wonderful you're cured and you can stop all your medications." Ummmm....I felt bad breaking her naivety bubble, but I feel the reality of this disease needs to be spoken about because who will ever donate to our cause if they think it's curable?? Sadly, I will always have cancer. It has spread and I just happen to be lucky enough to be on meds that are working so well on my subtype, at the moment. It's not a matter of "if" I'll fail my current therapy, but rather "when." However, I can never stop treatment. If I were to stop then the cancer would progress and kill me. That's a guarantee, hence why I am in treatment for LIFE, along with thousands of others who are living with metastatic breast cancer.

Now with all this wonderful news we needed to figure out how to manage the toxicity better. The meds that are working so well are also making my life less then ideal. It's hard to complain about this, but I can't just accept living life to simply existing, having a heartbeat, and being alive. These treatments that keep us alive are HARD, and my current therapy is cumulative, meaning it just gets harder and harder the longer I'm on it. I started back on chemo (Xeloda, also known as Capecitabine) just over a week ago after a 3 week break due to the toxicity. So here is the plan moving forward. There is no chance in hell I will switch treatments while it's still working as I am very aware that my treatments are finite. Therefore, we are switching my chemo cycles from two weeks on & one week off, to one week on & one week off. We had to bump the chemo dose for this type of cycle, but we are hoping less builds up so the side effects don't become so horrible. After two weeks, I will reintroduce Tykerb (Lapatinib) at a lower dose. Funny thing is, my most troublesome side effects are likely not even due to chemo but due to the Tykerb. This drug is giving me a tough time. By staggering the reintroduction of each we will have a better idea as to which drug is causing what side effect. Right now I can say that the chemo is causing my nausea...everyday... with moments where it peaks, and I need to lay down or I'll vomit. As well, I thought it was due to the time change that I have been feeling overwhelmingly exhausted, but nope I can attribute that to the chemo as well. I can and I will live with these side effects because I know it could be waaaay worse. We need to find my "sweet spot" because I can't go on with this regimen feeling how I did the last little while. I've only been searching for this sweet spot for the last 8 months!!!!!!!!!!! I just want to find my sweet spot, settle into it, and ride this wave of life, so that maybe I could live a day where I'm not reminded of the fact that I have cancer. That would be super sweet:).

Update

It has been an interesting few weeks. When I say "interesting" this means it has not quite gone as planned. Essentially it went to crap. My slight lack of appetite and thirst turned into an "oh shit 3 weeks have passed and I may be starving moment." I don't even know how to describe this other than oddly concerning!! Everyday that passed, I kept assuming that this sensation of feeling like I could simply hibernate with nillo reserve would pass. It didn't.

I must say that after three weeks of trying to consume Boost just to get calories, awful nausea, and limited oral intake, I was exhausted. I felt like I could barely keep my eyes open. It felt like this vicious cycle. Now the part to this that bothers me, and some may think it's insignificant, but this is simply what bothered me. I had made plans, and suddenly I felt like I was cancelling on everyone last minute. If you happened to be one of those individuals I am truly sorry. I hate ruining plans, but right now it's really hard to keep them, so I may be a little selfish in the coming weeks and retreat and simply take care of myself. I've realized as time goes on, that if I simply keep burning through reserves that I no longer have...well...I'll feel like complete crap and be miserable. I have enough of those days as is, so I would like to limit them any further if possible.

Then my feet literally went to craptown within 24hours. This lovely oral chemo we call Xeloda, DESTROYS your hands and feet, but I was surprised by the speed as to which it happened this time. It's as if the drug kept accumulating until one day my body said, "screw you," and voila just like that I was screwed! I've never had blisters and feet that hurt so bad. Truthfully, it was horrendous and that's when I stopped my chemo early.

On top of all this I had mentioned some hip pain that has worried me a bit. It's just this deep, aching pain. I suppose why it worried me the most is it had a resemblance to what my sternum felt like before being diagnosed stage IV. The pain at this point comes and goes, but I did NOT like how I would really notice it when I went to bed. Night pain & cancer go hand in hand which is likely why it made me mention it to my onc who then ordered an x-ray. Anyone who knows me knows that I think x-rays are fairly useless. Therefore, I wasn't in this urgent rush to get it done. Anywho, I got the req and forgot about it...that can be attributed to another lovely chemo side effect...thanks chemo I'm turning into someone who can't remember ANYTHING...it's bad. After over 7months on chemo I can officially say my memory is non existent...it's fleeting...it's not even comparable to the memory deficit I had when I was treated for my "early stage" breast cancer...oh no, this is far worse, lol. Sometimes when I write these blogs I have to go back to see if I've already written about it because I have this annoyingly fleeting memory (like I mentioned in the sentence above. I actually forgot I wrote it until I read back, and decided to keep this bit in, so you can appreciate what it is that I'm talking about). After a week and a reminder by my onc's nurse I went to get my x-ray. Sure as shit the x-ray showed something. WTF...absolutely not what I was expecting!! It showed a 10mm osteosclerotic focus. Ok, what this means is something showed on the x-ray, but we have validated nothing to certainty: Judit hates x-rays for this exact reason as well!!! It may be cancer but it might not be. This guessing game sucks!! I have never gotten a definitive answer from an x-ray, but rather always a hmmm... I'm really hoping it's arthritis or something not so deadly like cancer. Now I cross my fingers as I wait for my PET scan....hoping I don't illuminate anymore. Until then, the pain kindly reminds me of what I'm fearful of in the back of my mind.

After all this x-ray business I still wasn't eating. Therefore, I had to get IV rehydration. After 6 pokes of simply blowing through veins, and truthfully at one point I just wanted to leave and tell them I'd try to drink, very well knowing I'd likely just throw up. My hubby was NOT willing to take me home without getting fluids first. I suppose I scared him with my 'ungawdly' horrendous blood pressure, and my 'face' as he would later tell me, lol. Even after a single litre I felt ever so slightly, even a smidgen more perky. I wouldn't run to my car or anything, but my eyes were open!! That night I woke up three times due to extreme thirst. I was soooo happy because up until that point I never had any urge to drink! The next day I had my Zometa along with more fluids and some antiemetics. After that second litre, and the IV Zofran I felt pretty good. I managed to eat a bit more for dinner that day. After a few days of forcing more fluids I managed to get a litre in and I started getting hungry. This made me happy:).

My feet are slowly healing as I can now step on them without spewing profanities from my mouth, and I'm able to not starve to death as I'm eating and drinking!! The only reason I feel this way is because I was told to stop both my chemo and Tykerb...AKA: very effective meds, but will accumulate in your body and make your life a living hell. I get a minimum of two weeks off, but now I'm just crossing my fingers for good scans. I'd be lying if I said I'm not worried. These aren't yearly physicals, these darn tests literally determine whether I'm dying. They suck. They're overwhelming. However, this is the reality of living with metastatic breast cancer. Scan. Treat. Repeat. I want more. I, along with thousands of others living with MBC, want to be able to live life without the doom and gloom that hangs over our heads. I would love to go back to that time when I finished treatments for the first time. Where I moved on with my life in the most profound of ways, and truly relished in my life. I was aware of the fragility, but didn't require more toxic treatments. Life was so good!! I got married, loved more deeply, and went back to the best job ever. I valued my interactions with people, went to Antigua, and I LOVED every single second because I finally realized what was truly important in life, and what brought me the greatest joy! I so wish for that life again, but until then I'll do everything I can to educate the public, raise awareness for MBC, but more importantly I will fight like crazy to demand for increased research funding. I miss the "easy" life...AKA: my

life without cancer, BUT I have a sneaking suspicion that I will make the absolute most out of the life I have now been given. We all have a purpose in this world, but maybe I didn't quite realize what mine was supposed to be until now. Stay tuned...I don't want pity, I simply want the MBC community to be represented and finally heard. We don't need more awareness around early stage breast cancer, but rather more focus on the harsh reality of metastatic breast cancer. After all, it is the ONLY breast cancer that kills. 

This was the biggest blister I had. It's a bit hard to see in the pic but this blister essentially made up the entire top part of my toe. To say severe hand/foot is painful would be an understatement...It's bloody horrendous!!! It literally affected my ability to walk.

The only reason there is a smile on my face is because we finally got IV access!!!!

Honestly, this man is the most calming, loving, and wonderful advocate!! I've said it before, and I'll say it again, but I couldn't imagine any of this without him. Love you babes:).

Two Years

Two years. Two years ago today was the opening ceremonies of the 2014 Winter Olympics. Two years ago today my hubby and I sat in the hospital parking lot and cried...cried because today two years ago I learnt the cancer was never going away. Statistically speaking, depending on the source of your stats, I should be dead, but obviously you're reading this and I am very much ALIVE, and well. Plus, I always hated statistics, so this is very much the reason I like to slap it in the face! Stats schmats (no the latter is not a word, but rather what I'll start calling a 'Judit-ism' AKA a fabricated word that I have no desire of correcting, so just go with it). I mean cancer is still taking up residence in my body, but today marks two years since I heard of my recurrence, or my jump to "advanced stage" breast cancer. On average, two years is a number they like to throw out there and although I am beyond thrilled I'm also oddly scared. I feel as though a sniper is lurking and ready to take me out!!! However, I can't hide from my sniper because it's literally attacking me from the inside. Cancer is like a terrorist in your darn body, hiding amongst thousands of others, and you need to somehow kill the one bad guy, however if you open fire you know that there will be innocent victims. That's cancer...you need chemo to get the cancer terrorist, but in doing so you end up killing the good guy, or cells, that were innocent, essentially ending up with some major collateral damage.  Cancer is such a roller coaster that it becomes impossible to define. I miss my healthy and carefree days. As the years progress it's becoming harder and harder to remember the person I was pre-cancer. I've had to re-prioritize EVERYTHING because everything is different. The career I went to University for is just now simply a piece of paper, and not much more unfortunately. I was just told that my benefits will expire in the summer. Thanks...good thing I'm married or I'd be screwed! I mean we all evolve and grow, but cancer I feel has both sped up my life and halted it, frozen in time. It's an all around odd world to live in.

Don't get me wrong, I am so darn happy to be alive, but then some days I'm just sad over my friends who aren't doing as well. Their cancers are progressing and I'm doing well. It's hard to be happy when I know the problem is just being fixed by compounding bandaids that never really 'fix' the underlying problem, just a temporary Hail Mary of sorts. I wish I could be fixed...to be better....to wake up one day and be told the sniper has been shot, ran over a million times by a semi trailer, then dragged, before being thrown off a cliff into an arctic glacier fed lake, and only then I'd know for CERTAIN it's not coming back. I wish. This life I feel is in a parallel dimension. One foot in deaths door, but one still very much alive. It's messed up and indescribably hard. I mean hard to the point that I don't bother trying to get others to try and understand. People will sympathize for a second and move on with their own lives. I mean this is heavy stuff, but our lives never get the opportunity to get a break. I felt so lucky to meet with a fellow young woman (also in her 30s) right here in the city I live in!! Plus, ironically, we also had the same onc!! It was so refreshing to be able to talk openly with someone else who just "gets it." We both ordered rather large pastries and just picked away at it, lol. It was nice to not be asked or told why aren't you eating more??!! Why don't you eat more?? Well...because I have ZERO appetite, nausea, and if I shove more food in my mouth I will literally vomit. STOP asking me and please worry about your own meal. When I hear this repeatedly, although it's said with love and from a genuine place of caring, it makes me feel like I'm not doing what I should be to stay alive. I'm trying harder than you could ever in a million years understand or even imagine. I've started to resort to drinking Boost as it has gotten so bad as of late:(. I'm 30 and I drink Boost...yes sometimes you're desperate and have no other darn choice but to get your calories through a source that individuals triple your age typically need to use!!

I have so much excitement and hope for the next year. Becoming involved with a few different things that have kept me both busy and have gotten me excited. Goal is to do as much as possible to change the face of this disease. We need more. We demand more. We deserve more. Here's to many, many more years. Cheers!!

Broken

I had made high hopes for 2016, but it seems like things are crumbling around me. I went for my regular bloodwork before my next cycle of chemo. This is uneventful, simple, and I do it every few weeks. I've been checking my tumor markers more regularly then the every 3 months my onc had stated as I noticed they started creeping up again. I essentially kept checking until I got a lower number than the previous and now I'm blissfully ignorant as I ended it on a good note;). Cancer is a complete minfu*k!! This time when I checked in the lady told me where to proceed, where I sat down waiting for my blood to be taken. There was an elderly gentleman sitting next to me having his blood taken. I glanced at him, smiled, and sat down. He looked at me and then went on to proceed to tell the lab tech, "Be happy you're young and don't have cancer. I have cancer and it's so hard, and I don't get when these doctors send YOUNG, healthy people for bloodwork. They have nothing to worry about." When he stated the last bit he glanced over at me. Firstly, this collective ignorance by many "older" individuals has seriously got me upset. I looked at him and said the only words I could muster as I felt so ridiculously hurt by his judgemental comment: "ya cancer really sucks at all ages." Believe me I felt like completely going off, but I'm just sick of this collective mentality that having hair, putting a little effort into yourself to look half decent, automatically somehow equates to stellar health. Guess what: it doesn't!!! I would give everything to have been diagnosed with this disease when I was 80. Yes, I could have easily rebutted your remarks with; "You are so damn lucky and blessed to have grown old. To have gotten to grow old with your spouse, raise your kids, retire at retirement age, have grandkids, and maybe even great grandkids!!" That's what I wish I said because otherwise how can people learn when to keep their bloody mouths shut. Young people are not immune! I said nothing and instead sat there feeling like I was wasting people's time as I was "young and healthy." I shouldn't take this and after this last event I have decided I won't. Not ever again! If someone wants to be bold with their remarks, well then I certainly hope they're ready for my very BOLD response back;).

I don't get what on earth just happened to the month of January. I feel like this past month has been so unassumingly dedicated to heavy, sad, and overwhelming news. One of my closest friends, whom I have known since I was 5, was dealt a circumstance I couldn't even fathom. She had met the man of her dreams, and they celebrated their love by getting married just last year. I remember in August the pure joy they exuded. I can still remember telling my hubby how happy I was for her. She so deserved this beautiful person by her side because she had always worked so dang hard for everything she ever had. She did everything on her own. Never asking for handouts. Heck, never even asking her parents for help!

Then...the message that still makes me cry. At the time she couldn't speak, so she sent me a text message. I was out for lunch with my mom, after going for bloodwork, and I opened the text and couldn't believe what I was reading. The amazing man she had married only months earlier had passed away suddenly from a massive brain aneurysm. I honestly couldn't wrap my head around it. He was healthy. He was only 34. And he was a good, kind, thoughtful, and all around stand up man. Why??!!!!! In that moment I was numb. Numb over the fact that he was living, and living well, and then one day it was all over?? The thought of my beautiful bestie...the fact that she's a widow one month after turning 30!! How is any of this fair!!??? I look back on our childhood pics and wonder how our lives became so deeply rooted in tragedy. Why is it that others get to live, never experiencing tragedy or illness, and seem almost immune to it? While others have to get past hurdle after hurdle, simply treading away at life in order to stay afloat. Why do the individuals in our society who are delving into shady behaviour, and treating their bodies as a trash bin live into old age?? Of all these deaths these past couple of months I can honestly say they were ALL stand out, kind, caring, genuine, and beautiful people. I'm sorry, but nobody tell me it's "because God had a plan," or that it was "meant to be," or that those affected "will now find their purpose." NO! This is all garbage. Nothing good will come of my friend's spouses death other than never ending grief for his wife, and all those who loved him!! The sudden, unexpected nature of his death honestly made me question everything about life. I'm sick of people just letting their lives pass them by. Why don't you care??!!! Those that would give anything to live longer are shaking their heads as to why people don't value the life they're given!!!!

Then just a couple days after this my hubby called me from work (or so I thought he was at work) in the morning. The first words out of his mouth were: "Please don't panic." Oh for the love of God when you start like that I panic!! He was at work, and his laces weren't done up (yes, we will go back to the elementary days where lacing up your shoes was required, and I will remind him....actually I'm going to search for Velcro shoes at this point...the privilege of laces will be no more) so when he went to slide down the fire pole, he essentially never got hold of the pole. As in he fell 15 feet onto concrete, and the medics had to take him in to get checked out. The same medics who came out to our place to rehydrate me when I was really sick last year, lol. They're like the Saunder's family household personal medics!! Yup, I thought my heart was going to blow up. I instantly thought of my friend whose hubby had suddenly died and I was so scared!! Your mind always goes to the worst case scenario. I, along with the doctors, were shocked that he didn't sustain any broken bones. Like none!! They were fairly certain he would have had a broken foot, fractured wrist, fractured ribs, and fractured shoulder as he seemed to have landed on his side. He is unbreakable, and I was just beyond relieved that he was ok. How lucky he was he didn't land on his head...his back...people die from falls that high!! Then I thought of my lovely friend. Why couldn't they save her hubby...why oh why couldn't he be one of the "lucky" ones. I don't know but all of this was so mentally devastating. I like answers, and reasons for things happening. To me...all of it is senseless.

Due to all that has happened the past couple of months, I sometimes check out of people's conversations. I don't care about how you got stuck in traffic. Did you make it to your final destination? Yes, ok then you didn't die in an accident, sooooo who cares?? You're coffee was cold?? Yes....ok, luckily we live in 2016 where microwaves are readily available to heat it up!!! Problem solved. Oh, you spillt coffee on yourself? Shoot...however, have you heard of washing machines??? Problem solved. People... I'm going to admit something now. I don't give two shits about these issues that you claim to be "problems." These are FIXABLE, minor, day to day nothings!!!! For the love of my sanity just shut up!!!! Our society has become whiney and needy over the most unsubstantial loads of crap known to man!!! Think of the earlier days where wars were happening and people grew all their own foods, and had to WORK for everything. Then look at today. Yes, modern technology is great, BUT sometimes I scroll through facebook and think of the absurd, useless garbage that people post. I don't care to see what you ate, what you drank, what time you woke up at, and I don't care if you work out!! Wouldn't it be a nice surprise to wake up to a news feed that chronicles what good you did that day, or the one act of kindness you committed. I would much rather see that then the blurry selfie you post doing lord knows what as the only definable object in the pic is your big, ole head!! Have we become a society where every darn thing we do needs to be publicized, so that the most mundane things become something that should concern others??! I'm saying these things not to hurt people's feelings, but in an attempt to get people to just THINK. When did thinking become a difficult concept? Think about more than yourself. Think about some of the more pressing issues...as in BIG issues in the world. I'm not saying to donate to a cause even!! I just would love for people to be conscious of the things they say and to who they say it to. At this point in my life I must say that If verbal diarrhea is what you're going to spew at me I'll likely be thinking of whether my current chemo regimen is working....how much longer will it work for even...and the obvious of when you'll just stop talking and I can slowly move away from you before you tell me another story of how "hard" your pregnancy was. Yes, I surely couldn't imagine the "difficulty" of being blessed with the greatest gift of life because I would NEVER consider that a difficulty. I'm sorry, but if a healthy pregnancy is the biggest difficulty in your life then you must be a damn unicorn because you are the luckiest, and sparkliest person out there!!!

We never know what others are struggling with. The battles they're facing. Just when you think you have a grip on everything it's like this semi decides to come and roll right over you!
What happened to those days when my biggest, and most pressing issue was traffic? I know of many others who simply reminisce about all that could have been...all that we wished for...all that we lost. Next time, how about we all think of something other than ourselves.  And if you choose to focus on yourself, then please recognize the blessing bestowed upon you: LIFE.

Year End Review...A Couple Days Late;)

Another year is over. I planned to post this before 2016...but...I don't know life got in the way somehow...maybe efficiency should be my New Years Resolution?? Nah...the only resolution I have for 2016 is to be happy, live it up in any and every capacity possible, and enjoy my time with my loved ones. That's it...oh Lordy and good health!! HEALTH: please be on my side this year. I honestly can't believe that an entire year has passed...already!! Can we stop time for just a little while!! The past year had so many ups and some pretty crappy lows. However, I'd have to say the highs HUGELY outweighed the lows. Here's a little recap of this past year:

January 4th/2015: One of the best days, yet bittersweet, of my life! This was the day my nephew, my little "bubby" was born. I LOVE him to pieces!! He tries to escape from me at this point because he has been up and walking, more like sprinting, since he has been 9 months old. I have enjoyed watching him grow and being a part of his life. Can't wait to celebrate the big #1 Birthday!

End of January-February: Oh cancer you really, really messed with me during this time. I remember waking up and being unable to move due to excruciating pain that was either coming from my sternum, my shoulder, my back....I had no clue other than I was in a LOT of pain and felt pretty desperate for relief. This was the little while where I was taking Morphine hourly, Dex, Gabapentin, Advil...essentially this was the time of year as well where NOBODY wanted to be around me due to the "bitchiness" side effect. This was the time I really knew my family loved me because nobody killed me;). Trust me, during this time it would have been justified.

February: This month also gave me a wonderful opportunity to fly to Toronto and take part in a workshop offered by RETHINK breast cancer...a phenomenal organization in Canada geared towards education, support, and advocacy initiatives for young women under 45 affected by breast cancer. It was a wonderful opportunity to meet other young women with similar circumstances and to finally meet the amazing Steph in person;). This was definitely a weekend "high" point to my year, and thank you to RETHINK for giving me the opportunity.

April: This was a month that had an epically crappy week intertwined into it. I mean ultimate crapness! I ended up getting sick. Initially, I assumed it was simply gastro that would last a day or two. Oh no...this was the WORST diarrhea/vomiting I have ever had. I mean ever! Dehydration when severe is no joke people!! I was dizzy, had the worst headache ever, and was getting confused at the height of it. I actually scared myself during this time because I couldn't physically even walk without help. This was a very low point this year. Never would I think, looking back at my ENTIRE year, that diarrhea would be my low point...crappy. Really crappy. Oh the puns could continue on and on, but I'll stop out of fear that many people have stopped reading right about now;). However, the peak was most certainly when my husband asked the lovely medics at his hall to come and give me fluids/antiemetics, etc.. These lovely medics were my godsend because I didn't need to leave my house, but I was finally able to get fluids in that stayed in me and essentially helped perk me back up. After a couple days I felt like I was starting to get back on the mend. This was definitely the lowest of lows in terms of how I felt this year.

March: Yup, another wonderful month!! This was the month my hubby and I went to Oahu and Maui for just under two weeks. I mean the flight there wasn't my "shining moment," but we did make it there and we had an absolutely wonderful time!! Oh the waterfalls...the ocean....the beautiful green landscape...GORGEOUS. We made some pretty wonderful memories, so obviously this was another "high" moment for me:). We won't delve into losing my bathing suit top and bottom due to the strong waves, but ya that was a "moment" for sure. FYI and fun tip: The ocean will always be stronger than you. Always;).

June: June was a mixture of highs and lows so I'd say it balanced out! I learnt that my cancer was no longer responding to my first line of treatment so it was time for me to move on. Plus, I learnt of a couple new brain mets that decided to take up residence in my noggin. Again. This was crappy news. I was sad, I was scared, and my stability bubble that lasted a good 16months was over. However, this was also the month my bestie and I went to Vegas to collectively celebrate our 30th birthdays!! I was sooo thankful I didn't need to start my new treatment including chemo until I got back from Vegas...this may seem like a tiny thing, but to me this allowed me to have one of my "high" points this year because I was able to feel great on our vacation.

July: Oh July...I started chemo again, Xeloda, along with a targeted therapy called Tykerb. Yup this month was dedicated to the shitter. Literally. Tykerb is essentially the liquid crap stimulator in terms of drugs and side effects. I also had nausea and vomiting and in general was worried that this would become my "new normal." However, after some adjustments with the dosage I was able to get on a dose that was tolerable. I could leave the close vicinity of a bathroom and that was lovely. I also turned 30 this month and had a wonderful day!! I didn't shit my pants either, sooooo I'd say it was a successful birthday!! Here's to another year of life:).

September: This month I went to Lake Las Vegas for my mom's birthday. We had a completely relaxing and beautiful time. By this point I completed 3 rounds of chemo and by the end of the first week in Vegas I felt like crap. The side effects became pretty unbearable and the flight back was the first time I felt as though I just wanted to be home. Lesson learned! When the side effects become severe from these drugs: STOP taking them. The side effects were most certainly NOT worth it. I got a dose reduction from my chemo plus an additional week off to recover... Yaaaay to chemocations:) (a vacay from chemo).

December: My scans came back looking amazing. This meant my current treatment was working sooooo well!! This was such wonderful news that our entire family was elated by all of this!! Sadly, it was also a reality check to the nature and reality of this disease when four fellow metsters passed away in a short time span. It seems as though, looking back, that every month had some good and some bad. Once you have cancer it's intertwined into every aspect of your life. I wish I could ignore it but it's impossible to. This is the reality of living with cancer and what the past year has entailed to make it to 2016:

The first 6 months I took Letrozole daily (Approx. 181 pills)
8 Herceptin Infusions
I have taken over 500 pills of Tykerb since July
I have taken over 670 Pills of chemo (Xeloda) since July
I have had about 7 Zometa infusions
I have had 4 PET scans
I have had 5 Brain MRIs
5 ECHOs
I have taken countless amounts of supportive meds to combat side effects like nausea and pain such as Zofran, antacids, pain meds, etc...
I have had 4  Zoladex injection...AKA the dagger needle in the abdomen that takes a nice chunk out of my stomach every 3months just to ensure my ovaries remain the chronological age of an 80 year old:)...menopause in your 30s is like a very cruel, bullshit joke!

For all these therapies, scans, and meds I am thankful. Thankful that these therapies exist and have kept me alive and relatively well so I could enjoy another birthday, watch my nieces and nephew grow one year older, and spend time with my family and all those I love. Every side effect or pain was worth it and I'm happy I live in a world, and a country, where this is available to me at essentially little to minimal cost financially.

Going into 2016 I am excited, ready, with just a tiny ounce of fear. Fear of what this stupid disease has in store, but I'm excited for new research, for new therapies...for HOPE to prevail into 2016; NOT fear. Honestly, there seems to be so many exciting new treatments that are on the horizon that it truly does catch my attention and makes me realize that there is ALWAYS hope...I'll choose to hang onto that tightly this year and refuse to let go! Happy New Year everyone...let's make this year the best yet!!


        

New Years Eve and day with my family...these are the moments and people who mean the world to me... My hubby, nieces, & mom. Happy for many more moments like this in 2016!