"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!

When Will Society Hear Us??

It has been a while since I've wrote an update on here, so thought this would be a good time as quite a lot has happened in these past few weeks. Things have been relatively good the last little while minus the hand/foot syndrome bit (HFS). I also just had scans. Firstly, scans around Christmas time are always so stressful. The thing with this disease is you truly never do know what it's doing inside your body and the type of havoc it's wreaking!!

As many may know I had my PET scan and brain MRI and I am happy to report the results were beyond amazing!!! The brain mets are no longer visible on MRI with no new lesions noted...AKA: thank friggin goodness my brain gets a cancer break. BIG thumbs up for this one! Then the mets to my clavicle, hip and sternum essentially showed low to NO metabolic activity on the PET scan!!! My spine hasn't even been mentioned, meaning it's completely gone from there too!!! This news left me completely elated because this is essentially the closest I have gotten to NED (No evidence of disease) since being diagnosed metastatic. My hubby and I couldn't have been happier. As we left the appointment we both sighed a collective sense of relief knowing I could enjoy the Christmas holidays without worrying about different treatment options, side effects, or worse having to have the difficult conversation about end of life. We both realized how truly stressed we were going into this appointment as we felt a huge weight was lifted off our shoulders after hearing the results.

We spread the news to our friends and family with as much excitement as when we announced our engagement, but this excitement exuded a sense of overwhelming relief and peace with the knowledge that today, things were ok. That's all we wanted for Christmas was to be ok; health wise. The meds I'm on are no doubt working as evidenced by my most recent scans, but this also comes at a price. Now don't get me wrong, as it is a small price to pay, but on some days these side effects get to me. The skin toxicity caused by Xeloda has forced me to take an extra week off so that my hands and feet can recover as the HFS became so severe that walking became near next to impossible without having severe pain. Half my toes are sprouting blisters and six of my fingers have simply split open. I was told that I could super glue my fingers back together. When I asked where I would get this medical super glue I was told; Home Depot. Hmmm...I kind of felt like my health care is spanning to hardware stores now!! First, I thought I needed to go to a vet to get udder cream for my hands and feet and now this??!!! Plus, a not so lovely side effect of Tykerb are peronychial infections which basically occur around the skins of your toes. So now I have multiple infected looking toes too with one great toenail completely separating and lifting up down to the cuticle. So now I'm applying approximately 8-10 bandaids on numerous fingers and toes, twice a day, with the clindamycin ointment and topical steroid. Yes, I am flying through band aids like it's going out of style...heck, I wished for bandaids this Christmas as my stocking stuffer, and the sad part is this would truly make me happy!!! Oh, how my life has changed. If the topical antibiotics don't cut it then I'm on oral antibiotics for 3weeks so here's hoping the topicals work well!!!

After we left our appointment we made plans to head to Banff the next day to relax and celebrate the great news. When I thought the day couldn't get any better I was shocked and saddened to hear that a fellow metster had passed away. We had messaged each other back and forth and realized our close age, stage IV diagnosis, and that even our oncs were the same! I finally had the pleasure of meeting her 3 short weeks ago as I waited for my oncology appointment. We talked, hugged, and wished each other the best. Never would I have thought that that would be the last time I ever saw her again. How could this happen?? How was it that just under 3weeks ago her scans were looking better and she was optimistic things would work...at least a little while longer?? I was speechless and beyond heartbroken for not only her husband but her 2 year old son. A baby needs his mother. This news simply reiterated the nature of this beast we call cancer. It does not discriminate. Doesn't matter your age or what a lovely person you may be. And sadly it doesn't care if you have babies that are relying on you to be there for them. Cancer makes our lives grossly unpredictable, but leaves us holding onto any sliver of hope to allow us to believe that our mortality isn't truly as close as it appears in reality. You see. a fellow metster once explained this and now it resonates with me more than ever. The scans we receive every three months aren't an indicator of our health for the next three months, as in an insurance that we'll get by these three months. Rather, it simply solidifies that the PAST three months were good. That's the scary part of cancer....there is NEVER going to be a guarantee. If I manage to completely enter into the mystical and magical land of NED, even then I won't know if it'll last a year, a month, or a couple of weeks. This disease strips us of the ability to plan for a future...we are forced to take each day as it comes. With so many friends entering hospice, dying, and deteriorating as of late it again reiterates the importance of finding the beauty in TODAY. Today is all we can be guaranteed so why not guarantee it to be worth it.


As I finished writing this post four fellow metster friends have died in total in a matter of a few short weeks. Two were 31 and 34 years old and they were both mothers of adorable two year old boys. One was no evidence of disease four short months ago...what happened??!! My other friend I visited in hospice just a couple weeks ago, and I will always cherish that time we had together...she's gone now too. Then, another friend, in her 30s, was just told she likely only has months left...there's nothing more that can be done. See, these are only a few faces and whenever I post these pics people seem shocked by these women's beauty, their relative vibrancy in the photos and people think: this is so very sad and our hearts break for their families, especially when they have young children. However, I don't know if people understand that THOUSANDS of women die every single year. And well over one hundred people die PER DAY from this disease in North America alone!!! Someone told me why dont you take a break from social media so that I'm not exposed to this. In my eyes, this would be an indescribably selfish thing to do. Is it hard to keep watching my friends slip away from the exact same disease that I am inflicted with?? Yes, exponentially hard but you want to know what's harder?? Dying alone and being forgotten. I'm sorry, but as hard as all this is to bear I am not a piece of shit individual who will abandon someone during the most difficult and gut wrenching time of their life. If running and hiding from the problem seems to be the solution that many feel is appropriate then we will never get any closer to a cure. These women's faces and stories NEED to be told. They NEED to be spoken about, so that the world can see that this has become an epidemic. These were simply AMAZING women who have inspired me like no other.  We are dying at such an alarming rate that I can't take this anymore without making some noise, standing up, and becoming the biggest pain in the ass out there!! But what happens when I can no longer keep advocating, and essentially begging for change?? Will anybody else do it for us?? I will sure as shit not let the deaths of these beauties be in vain, and I don't think the world should either. Let's stand together and demand more. One day this could be you, your mother, or your child. Do you have any idea how hard it is for me to watch my mother crying out of fear for her own daughter when she sees my friends dying? I know what she's thinking and I hate that I'm the source of her sadness, or rather the damn cancer is. Would you be ok with this? When will this madness end??!!! None of this is ok, but I will promise every single one of these beautiful women that their memories will never be forgotten. They deserve more. The number of children who no longer have their mothers deserve so much more and up until now we have failed them....failed them miserably. Society as a whole has failed every single one of these women and I am so heartbroken and sorry for this. This needs to END!! Lyndsey, Adrienne, Carolyn, and Regina may you all rest in peace....when will the world hear us and finally HELP us??!!! This should not have been any of their fates, but sadly it was. Hug your loved ones just a little tighter and when you tuck your children in tonight, remember these lovely ladies whose toddlers no longer have what every child deserves: their mother. HELP US. Why are we not worth saving??

Lyndsey, Carolyn, Regina, & Adrienne

Lyndsey...Passed away two days after turning 31. I saw her less than three weeks before her passing. She was optimistic because she finally received better scan results. I was so happy and excited for her that she could enjoy her Christmas...she never lived to see another Christmas. The complete epitome of REAL beauty...She was a kind, compassionate, and beautiful soul who was so dearly loved. She leaves behind her husband and her adorable 2 year old son.

Adrienne...Passed away at the age of 34. Adrienne was such a ray of light. It's easy to see just from these pictures how she exuded such pure joy and happiness...that was Adrienne. Always smiling and hanging onto any sliver of hope. Adrienne was strong. Simply days before her passing, she asked if she could borrow a wheelchair from someone just temporarily until she was back on her feet...sadly, she died not long after. She didn't get to live to see another Christmas. She leaves behind her husband, and also her sweet little boy who was also only 2. He was most definitely the centre of her universe. My heart breaks at the thought of him crying for his mommy. I am so sorry sweet Kellan.

Carolyn...Passed away at the age of 54. Oh sweet Carolyn where do I begin. Carolyn was the epitome of kindness. She was so witty, exceptionally funny, and one of the kindest people I have ever had the privilege of meeting. Carolyn went from having a relatively low burden of disease to the cancer spreading everywhere, ultimately leading to liver failure. Carolyn was so dearly loved and I will cherish our conversations we had when she was in hospice...it was an undeniably huge privilege to meet her in person. She leaves behind 3 sons, her mother whom she helped care for, these two beautiful grandsons you see in the pic that she adored so much, and Julie; her sister. I feel it's important to speak of the families touched by cancer. Julie stood by her sister through EVERYTHING. Their bond will never be broken because their relationship is something we can only wish for in our own lives. Carolyn was a fierce advocate for the metastatic community. You will NEVER be forgotten.

Regina...Passed away at 51. Regina actually started following my public FB page and we messaged each other regularly to see how the other was doing. Regina also exuded such a strong sense of caring and kindness. She had a low burden of disease in her bones and truly felt that she had many years of living with this disease. Then came the message that I wish never would have been. She informed me that her cancer spread to her heart. Apparently an extremely rare occurrence, however it happened to Regina. Regina had a family and many who loved her as well. Sadly, not long after the cancer progressed she also passed away.

All these lovely women should still be here today, but they're not. It was too late and research did not advance to the rate at which they died. We DON'T have time! I don't know how to communicate the urgency any longer. These were simply four of hundreds of women who die from this disease Every. Single. DAY...they all have names, faces, families, and a purpose. If this doesn't effect you then what will?? What will it take?? When oh when will the lightbulb go off?? I can only hope that it's before another friend dies. Sadly, deaths won't stop for the holidays, children will continue to lose their mothers, and those that knew them will mourn. We will cry. We will curse and continue to ask "why," and the rest of the world will continue to live, unconcerned and unaffected by any of it...until of course they are personally touched by cancer themselves. THIS NEEDS TO CHANGE. Please, please help us!

Please consider making a donation to a wonderful organization where 100% of the funds go to metastatic breast cancer research - METAvivor. http://www.metavivor.org
Or to BCRF where over 90% goes directly to research at: http://www.bcrfcure.org/get-involved?gclid=CO2UuaPc88kCFQuSaQodun0Pbw

Chemocation (AKA: a vacation from chemo)

Yup I got one week off of Tykerb and my chemo, Xeloda, due to the side effects. At first I felt a bit disappointed because, according to my latest scans, it has created stability among all my mets, including the one location that still makes me cringe: my brain. However, along the same lines I knew I couldn't keep going on the current dose, simply due to how horrible I felt. That week off ended up being AMAZEBALLS!!!!!! I didn't do anything extravagant or exciting, but rather the way I felt was the best I've felt in a pretty long time. I suppose I didn't realize how truly horrible I felt until I stopped the meds. I was kind of hoping they wouldn't call me to restart because I just didn't want to...I know that's bad, but it's like letting a child get a glimpse into Disneyland and then saying nope we aren't going there, but rather you're going to a park. No, not an exciting park but one of those cheapo parks that you feel cheated by, like one that has a seesaw and a slide. Yup, no swing...everybody's favourite component to a playground is absent!! This dragged out comparison is to demonstrate my point that you realize how much better it could be, and just how much more fun you could be having, but you have little control over the choice because in my scenario I kind of need to stay alive, so crappy meds it is!!

Now I certainly hope these meds work on the reduced dose as well as they worked on a full dose!! Sometimes it makes me feel like a smidgen of a failure. To be honest, although I was happy to have achieved stability on my current drug regimen I was kind of hoping for NED. NED amongst the metastatic community is like winning the lottery as it stands for: no evidence of disease. Yes, you still have cancer but the drugs have knocked it back so much and it's so tiny that it's not detectable on scans. I know I feel a bit selfish even saying this because it makes me feel greedy, but I felt I sacrificed so much of my quality of life on this drug that I expected no cancer to be found. Yes, I can be delusional. I was really hoping I could tough it out (as in the dose of the Xeloda), but by the time I got back from vacation I just felt so...ugh. Deep down I knew I needed a dose reduction, and it couldn't have come at a better time as my skin was starting to split on my palms and on the soles of my feet. Yup, I now officially have elderly hands and feet. I resorted to wearing Sketchers!! Yes, that's significant for me because I love shoes, and cute little flats would have been my preferred choice of footwear but I was in so much pain we had to part ways....BUT thank heavens that was temporary because I bought a cute pair of flats in Vegas;).

The other "smidgen" of an issue I had, which is also amongst the many desirable (aka: just another nasty, slap in the face side effect) side effects I've experienced was an ingrown toenail. So the last time I had my appointment with my onc I was given a prescription for oral antibiotics because the toe was a "SMIDGEN" bit infected. One thing you need to understand about Judit is I don't pop antibiotics like candy. I need to have a better infection than popping em for a toe!! Pneumonia or a fever pops in my mind where I would tackle those pills like it's nobody's business, but I just didn't find my toe justified. However, I smiled, nodded, and pretended like I would be a compliant patient because I really wasn't in the mood to argue. I even filled the script so I feel the intention was there so I would say I was moderately compliant;).

Overall, round 4 (I feel like a boxer using this terminology) was much more tolerable. If anything, by the end of this round my hands and feet were starting to swell again but it was not the severe swelling and pain where my hands and feet were deemed useless like with the previous rounds. The GI side effects have become waaaay better. Stomach cramping annoys me. Intermittent nausea persists so I went back to popping the Zofran, but this too is tolerable. The last little bit that has annoyed me is dizziness, but oh well. All in all these are tolerable and livable side effects in my eye. I feel that I can continue to live on this dose because I have learnt to manage these side effects for the most part. Bring on round 5...oy vay the boxing match that has an indefinite number of rounds...I feel like I'm getting my butt kicked!