Author: metastaticbreastcancernowwhat

As I was saying about happier days…

Yes my posts have been…grim to say the least for far too long!!! While I know sadness, pain etc. is a part of this, it is not ONLY what it is! lol Does that sentence even make sense?! Whatever, it stays as it is, moving on… my pain and mobility have improved so much since the week in hospital. Meds, radiation and bone treatments have finally kicked in and I am feeling miles away from where I was, can I get an Amen!!! Also, my most recent blood work has shown my liver enzymes are down so the new chemo, Eribulin (Halaven) just might be working. There is only about a 6 percent chance that this one will do anything positive but I could not help but feel such happiness and hope from those results. I have also been furiously researching, trying to find other treatments that might be available to me if this one fails quickly. I have a couple promising leads but I am not an oncologist so I really have no clue, plus we are in Canada and not all treatments are available here. As much as I am accepting my death, I am not welcoming it at all and my promise stands firm, I will not give up!

Enough about treatments!! Some wonderful things have been happening during this rough time and they need to be acknowledged! Starting with the most simple, my beautiful sister Tina took me for a mani/pedi and it was wonderful! There is nothing like getting your nails done, so simple and refreshing, just makes you feel pretty right! As you know, because you are reading my blog, I write a blog. It is with great pride I can tell you I was published in Wildfire Magazine, an online mag for younger women with breast cancer. They were doing a Metastatic issue and I was chosen to be included as one of their contributors!!! I would suggest this magazine for all the under 40’s with breast cancer. It is a really great read and touches on subjects that are important for women with breast cancer under 40, here is the link to them Wildfire. I have also been highlighted on breastcancer.org!!!! I am pretty sure that any of you reading with breast cancer has been on this site many times.  An amazing site for support, information and anything else you could think of. I actually did a podcast, holy shit I was scared lol but from what I hear from others that have listened to it, I did a pretty good job! My daughters video blog post was also shared by them and she was over the moon about that. My husband, Pat had done a blog post a while back and that was also shared on breastcancer.org. Here is the link if anyone is interested in checking it out http://www.breastcancer.org/symptoms/types/recur_metast/blog/curley-family-loveI never thought my little blog would ever reach so many, I am just a mom from Oshawa lol but, I am beyond grateful!

A few months ago I took off my wedding ring for a C/T scan. When I went to put it back on, it was gone. I could not find it anywhere and I was gutted. We all searched the house in every nook and cranny, but it was not to be found. I had planned on leaving it to my son for his wedding and it was driving me crazy that I had lost it. I looked online to see if the store still had my ring and to my surprise they did. So I planned on buying a new one, not quite the same but I was OK with it. Well, my sister, my wonderful amazing sister came up with a plan and my family, god bless them!, rallied together and replaced my ring! I was shocked and cried like a baby! My heart was filled and I found peace in my soul as soon as I put it on!

Another wonderful thing that has happened, my amazing friends!, have proven once again that they can not be beat! So supportive, loving and awesome! They knew I wanted to plan a family trip. I have promised this to my kids and it is so very important that I make this happen. There are a few roadblocks we need to remove before we can make the trip happen. Jenn and Brian automatically wanted to help and offered up their minivan and timeshare in Florida to help. Unreal! Then Mark decided to set up a go fund me campaign to help as well. We can’t thank all who have donated enough!!! The campaign is amazing and aside from a couple more bumps we will hopefully be on our way to geeking out with Harry Potter in Universal Studios and Disney soon.

While I was able to appreciate all these wonderful things, they were clouded by how sick I have been. The shorter life expectancy was also a giant hurdle to get over. I was so heartbroken. I am in a much better head space now and can now give these kick ass amazing happenings the recognition they deserve!

I want to thank all my family and friends for everything they have done. I love you all so much xox I am truly spoiled rotten and one of the luckiest people ever!!!!

Love and laughter all!! xox

Advertisements

The F&#k is strong with this one (not a very uplifting post, just a warning)

So here I am, another sleepless night. It’s 3:30 am and I have been trying to sleep since 10. It has been a rough few days… ok who the fuck am I kidding it’s been a rough 3 years. But this week we were told to expect about 3-6 months left of my life, technically we were told I am not dying tomorrow but be realistic it is definitely less than a year. I am currently doing my last available treatment. The cancer is very aggressive and nothing has been able to stop it’s putrid destructive infiltration.

I will not sugar coat anything, I am fucking terrified, heartbroken and frustrated as hell. How the fuck is this really happening?!  I can’t explain what is going through my mind, it is wrecked right now. I always knew what was to happen at the end of this ride, but to be honest, I always thought I would be one of the lucky ones living for 10 years. Unfortunately, my ride is coming to an end much sooner than I am prepared for. I still have hope, a deep strong hope that is clinging to life and time. I have so much to do still, so much to see.

My husband and soulmate! We have been through so much together and we should have so much more. No one could put up with me like he has. He has already had so much heartbreak in his life and I am adding more, fuck I hate that! My babies, oh dear God, my babies! How can I leave them when they still need their mum for so many things. No highschool graduations, no first loves, no marriages, no chance to be Grams. No more hugs or kisses. No more cuddles. My mother, my sister, my Cindy, my family and best of friends (I will always consider family) I hate what this disease has done to the ones I love so dearly. My heart is broken, no, there is no way for me to describe my pain and utter sadness, I can’t even try right now. The amount of pain I will cause when I go tortures me more and more.
I wan’t to run away from this, but there is no where to run. I want to wake up from this horrible nightmare but I am wide awake.

What we are working on now: Making an appointment with a psychiatrist to help us break the news to Buba and Poo on what is happening. Jesus Christ, how are we supposed to do that! No child should have to deal with this shit!!! Fucking hell, FUCK YOU CANER from the depths of my soul FUCK YOU! Planning my funeral. Planning on where to die, hospital, home hospice? Planning to tie up loose ends. Planning a family trip, as I promised! Trying to enjoy every second I can behind a smile to make each day as normal as possible.

I am not writing this for sympathy, I am simply being honest with this ramble to help get some of this blacknesss out of my head. This is a dark time for me, hopefully I can start bringing more light into my days, you know what, fuck that, I can so do it and I will. But for right now my feelings are what they are and I am allowed to feel them.

I know some of you that are reading this know exactly what I am saying and understand completely. I ask my fellow metsters, what do we do when we are told the news we have been fighting and praying to avoid hearing? How do we push aside the devastation, heartache and horrifying feelings. The mourning of my future’s loss is overwhelming and when I lose control of my thoughts and end up down the rabbit hole, it is madness!! I would much rather be having tea with the Mad Hatter, titmouse and White Rabbit!

Just to touch on the where should I die…this is a really tough one. Funny but not funny, I think about my dog. If I die away from home, she will never know and for the rest of her life look out the window waiting for me to come home. It may sound so ridiculous to some, but honestly, I don’t want to do that to her, she is my Pupup and I love her too and she is a part of my family, so unless there is hospice that allows animals, I will probably end my life at home.  This is an example of the fucked up shit I think about.

I wake up everyday knowing another day has passed, and all I want to do is stop them from passing, knowing I am another day closer to the end. This disease is fucking torture! The pain I have endured from treatment has been so hard but does not come close to the pain I carry in my heart always. Where we, as humans, get the strength to carry on when faced with such tragedy everyday, I have no idea. This has been the toughest trial I have ever endured, but I will continue this fight and dig deeper and deeper until there is nothing left to dig. I pray and hope everyday for another treatment to miraculously appear and give me more time.

Again, my promise:

 

 

It is now 4:30 and I feel a little better letting this out. I think I will make myself a cup of tea and sneak into my daughter’s bed for some cuddles and comfort, maybe I will find a few moments of peace and sleep.

I thank you all again for reading and supporting me, I love you

Love & Laughter always
Krista

P.S I will try to keep some of my posts a little lighter and happier as my days coming will be filled with mostly love and laughter! 😉

Another treatment bites the dust

About a month ago, I started to feel more pain. Pain has been a part of my everyday for as long as I can remember, but with MBC it has strongly progressed through these almost 4 years. Every time I think pain has hit it’s highest point and could not get any worse, it hits another high and I am shocked when it hurts more. A week ago, I had to send myself to the hospital as I was experiencing the worst pain I have felt so far. Literally, I was crying and screaming and did not know how to escape it. My poor mom was so freaked out. After a weeks stay with palliative care, we finally were able to somewhat control this awful pain and I came home with a plan to start radiation on quite a few spots of my skeleton. I am nervous about the rads but excited to know it will help with the pain. I am focusing on trying to get passed all the nastiness it will bring until the relief comes.

We sadly learned that after only 3 treatments of the last chemo, it has failed and there is again progression. No one, not even my Onc was expecting this devastating news. The plan right now is to control the pain first! And we are doing a CT soon to check what organ involvement may be happening.

This is a hard post for me. I am terrified and very sad. I have initially been given these 3 choices: give the last chemo a try (which has a probability of 5 percent working for only 3 mths), search for a trial drug that I might fit into (in hopes that I get meds and not placebo) or do nothing.

Since we were blindsided a bit and we did not have ALL info, I am hoping after these next 2 weeks we can find some sort of miracle to give me life. I will not speculate on time, there is really no way of knowing.

Here is my promise to my family and friends, I will not stop fighting, I will not stop treatments until I have exhausted them all, I will fight for my life with every ounce of strength I have.

Thank you all for caring, supporting, loving and reading!!

I will keep you posted with updates

Love and laughter xo
Krista

Fear & Loathing in Oshawa

Ahhh Autumn! Fall is awesome! Cozy sweaters, jackets, hats, scarves and boots! This is one of my favorite seasons including pumpkin spice everything!!! YUM! Sorry, back on track… I recently made a trip to the mall in search of some cute boots. As I entered my first stop, I was so excited, God I love shoes!! Looking for my first choice of a Chelsea boot, I picked out a couple and began trying them on. Loved the first pair, comfortable and adorable and not a bad price, but as I checked them out in the mirror my eyes started at the shoe and began the journey upwards. What was looking back at me was immediately cringe worthy. A giant hot mess! Aside from the boots, there was nothing cute about it! Big ol’body showing every ounce of my unescapable and irritating weight gain, awful hair, no lashes and a just a giant sweaty mess, sweet Jesus even my fake boob was sticking out of my top! I was done and I could not escape fast enough! I put my flip flops back on and made a quick dash down the hall, filled with anxiety, thinking everyone was looking at the drippy blimp of a woman walking down the mall. I got into to the elevator taking in a deep breath and back into the car where I succumbed to sobbing. How ridiculous!

So let’s talk body image! For reasons I will not talk about here, it began when I was a child.  I can not ever remember feeling good in my own skin or really loving myself. Having cancer sure has not helped in the department. I know I am not the only person in the world and I know it could be worse but this is how I feel and I know others feel it as well. I have touched on this subject throughout my blog and it seems to be a theme of most others lives with cancer as well. Things that have affected the view of myself include: no eyebrows, no eyelashes, thinning/baldness altogether horrible hair, weight gain, port insertion scars, absurd sweating, mastectomy scar, uneven boobage, fat arms, honestly fat everything! I find it so challenging to keep a positive self image. It is hard enough facing daily pain, depression, exhaustion and my eventual death everyday without self hatred added to the pile. Daily fear of progression and what may come next is a constant nuisance but a negative body image that stops one from wanting to leave the house and causes anxiety is the pits!

So the question is, how does one keep her/his chin up during all of this? I was doing great for the first 3 years or so of my diagnosis, but I have found it hard, that word does not quite describe it, daunting, alarming, demoralizing, disconcerting, discouraging, disheartening, frightening, intimidating, off-putting, unnerving and any other words I can steal from the online thesaurus! I need to rekindle my fire for living and not let my self loathing interfere with the life I have left.

As I was retelling the story of my shoe shopping failure, my amazing son reminded me, “You look great mom, even when you say you look terrible, you don’t and you are beautiful!” Come on!!! How on earth did I get so lucky to have such an outstanding 16 year old! My husband is always telling me he wishes I could see me through his eyes because I am beautiful! I wish I could, he is so sweet. I think most women can understand, that while it is nice to hear such positive things and being so supported is awesome, the vision we see through our own eyes can not be changed by this. It is up to me (us) to accept who I am and change the adjectives to positive loving ones! Adjectives like cute, beautiful,luscious and glistening! 😉  Acceptance, this is the key! Learning to love the person I am now, scars, sweat, big booty and all! I have committed to changing the view. So daunting and difficult but worth it, I am worth it!

Love and laughter everyone!! xo

Bucket list- Pasta

So a while back I talked about a bucket list. I can not express how important this list is!! Not just for people with a limited life but for ALL! My hope is that every person checks off a list item once a week. Remember, things put on this list do not always have to be sky high and hard to reach. Sometimes the more simple ones can bring just as much joy and sense of accomplishment and can be so satisfying!! Recently I checked off making pasta. It is just something I have always wanted to do. So my sister, Tina and I were able to spend a few days together and we decided to make it. The dish was pappardelle pasta with a homemade beef ragu. The sauce was spectacular and I highly recommend making it! We used a pressure cooker with stewed beef chunks, celery,carrots, garlic,crushed tomatoes,beef stock and a little tomato paste (I think that’s it), a very simple but delicious sauce. When we started making the pasta, I have to admit, we were nervous. TV always makes it seem so difficult and easily screwed! Don’t overwork or underwork the dough, too dry or too wet, do not overcook or undercook even by seconds!!! This was a lot of pressure lol So we said screw it! We are going to have fun and make this pasta!! ( we had a bag of dry store bought just in case 😉 ) So away we went sifted our dry ingredients made the oh so important “well”. We are still trying to figure out the purpose of this “well”, why is it so important? Why can’t we just add the wet mixed ingredients to the dry slowly? Oh so many questions…  Whatever, if that is the way it is done, then that is the way we will do it! It was messy and we thought we were doing it all wrong but slowly it started to come together and then voila! pasta dough!! No pasta machine, no problem!! A rolling pin was all we needed! Rolled it out, cut it up and popped into boiling water! We had such a great time! My nephew and daughter helped and it was such an amazing memory to be made! Our dinner was a hit for all and we are looking forward to making it again.

So, an easy cheap bucket list item checked off the list!! Start to think of things you have always wanted to do. Big or small! Experience and adventure are waiting for you, just open your mind and start doing, start living!!! You will not regret it!!

Progression

MBC is always progressing. Whether it be slow or fast, always forward this monster claws. Mine, once again has grown. For the past little while I have experienced pain in a few areas of my skull ( bruise like feeling),pressure, headaches, fatigue and nausea. So scans have revealed mets to the skull and liver.

Please don’t tell me to stay positive, I promise you I am being as positive as I can be!! Please do not tell me “I got this!” or “Everything will be OK!” Everything is not going to be OK. I feel the need to remind everyone, the end game of this disease is death. It has no cure. The only hope is to slow it’s growth.
My doc, the amazing Dr. Chang, has never been able to give a time frame even after years of me (annoyingly lol) constantly asking how much time I may have left. This changed last week and because I feel like I know him and a little on how his brain works, it scares the hell out of me. My life has basically been calculated to about 2 years. He has worked so hard to try and slow this cancer down. He is so smart and has so much knowledge. I think it has frustrated him that my cancer has eluded his plans of attack.

So I have vowed, once again, to fight fight fight for my life and plan on proving those stupid STAT’s wrong!

The plan for next week: a new chemotherapy called Xeloda and a biphosphonate injection Zometa. An MRI for the liver will also be done to check out the extent of the liver tumors.

Progression is not great news but it has been expected, sadly 😦   BUT, I am feeling pretty positive and surprisingly mind strong.

Love, live and laugh everyone!!! Much love xox