Thursday 25 February 2016

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:).



Sunday 7 February 2016

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!!


Wednesday 3 February 2016

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.