Category: Uncategorized

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

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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

I’m FINE!

I have been struggling a lot lately. I have felt in limbo. Stuck, scared, stagnant…The past 3 years pressing down on me with unrelenting dominance and the future’s haunting unpredictability gnawing on my soul. Needing progress for answers but progress means closer to death. Quality over quantity. I get it, I really do, but I am frustrated!!!! I am tired! I am exhausted from trying to be stronger than I am! Feeling like shit from one degree to another on a daily basis. Nonstop life taxing treatments. Feeling buried under all the bullshit pink ribbons, feeling like my disease is ignored! De Novo at the age of 38. Angry that there is NO ESCAPE, except death, to fighting this disease everyday. Pissed off I lost my breast. Honestly, I wonder what the point is a lot of the time, fighting for life just for it to end!? This does not make sense in my brain! My children having too much knowledge about cancer for their ages and carrying around the burden of their sick mother. My husband having to deal with it all!! My sisters, family and friends…

Yeah yeah, we could all die tomorrow but here is the deal, I know how I am going to die! My death has hit me in the face and keeps backing up and charging forward again and again. It firmly reminds me everyday that I have no control and what will be will be.

I am going to be honest and admit to you all that I have been battling depression for the past while. I tried to ignore it. But it can not be ignored. I felt weak, weak that I was letting my disease take over. I hated how I felt. I had anxiety like crazy or the simplest things. I didn’t want to do anything and my anxiety would not let me. I was trapped and all I wanted to do was sleep and hide away from everything. I tried to hide it from my kids and husband, family and friends. Embarrassed by the fact that I was depressed. I did not want to admit it and I was terrified to say it out loud! But when I finally did, I cried and a tidal wave of emotion swept through my body and soul. That was the moment depression began to release it’s hold over me. Slowly I have started to feel better. Medication, of course was prescribed. But more than that I started to try and do things. A little yard work, grocery shopping on my own, a yoga session or 2. I started using my Valor essential oil again to help calm my mood and inspire me.

I am writing this post to let others know, it is OK. Don’t feel weak or defeated because you may have depression. Depression is serious and debilitating in so many ways. If you think you may be suffering, please please ask for help. I should not have denied and fought so long. I have missed out on living. You are not alone and help is here!! Talk with your doctor. Open up with communication and keep talking. Don’t let this rule your life any longer and begin living again! You are strong enough and you are loved!

feelbetter

 

So what do we do?

Wake up day after day and bravely “take on” living with cancer.

Mind over mammory: Mastectomy

Second verse, different from the first! Another post to help those who are going through a mastectomy but this one is more focused on what your mind might be going through and a couple of tips.  This is just my experience and everyone is different.

My surgery was unexpected, as I said in my Bye Bye Boobie post, I was always told it was too late for surgery so in my mind a mastectomy was never in my future. As always with this disease, it is wise to always keep your mind open because anything can happen. It is so unpredictable and always ongoing and growing. Remember nothing works forever but also remember to enjoy the “pauses”! As the disease progresses treatments get harder and harder. I think that was a part of my sadness with this surgery, new treatment because of progression. Every time this happens I am reminded at how little control I have and my mortality is put in check.

Psychologically this is a hard surgery, no one looks forward to losing a breast and I found that the time before surgery was the hardest, I thank God that I only had a week to think about it. Honestly, it was a very long week. I also highly recommend you stay away from googling pictures, trust me from experience. Two days before my surgery I was trying to find pics of women that had their surgeons manipulate “fake” cleavage from breast tissue but was only horrified and scared to death of what I was going to look like. I swear they only post the most distressful pics out there!! DO NOT look to the internet pics for reassurance!!  Try not to think about what will happen or what it will look like after, it will just add unneeded stress to your recovery!  The reality is you are losing a breast and your chest will look different, accept it and it will make the before and after easier. Focus mostly on your health, there is a reason for this removal, it will bring you life! My biggest advice, be brave and stay strong, you will get through it!

As I said before the waiting is the hardest. In my opinion  do whatever makes you feel better, fuck it, this is hard, so hard.  Get a pedicure before you go in, go out for a great dinner with friends and anything else that brings you happiness.   My wonderful friends helped me get a boudoir photo shoot. This was so amazing and I highly recommend it. It was such a great way to have some beautiful photos taken before your body changes. I decided to go tits out and give my husband some shots to remember my awesome boobs! I also decided after 3 years of fighting this bitch, to take the time to relax and recover at my own pace! No guilt just recover in peace!!

Getting out and about was a problem I didn’t think about beforehand. I couldn’t drive, I have a manual car and my mastectomy happened to be on my gear shift side. This was a big challenge for me, not being able to even leave the house if I wanted to, at the mercy of others but not wanting to bother anyone to take me anywhere, I already feel like a giant burden and I didn’t want to be a bigger one. I did feel a little isolated and lonely but sadly that already comes with the disease.

I also found it was difficult to look at my chest, avoiding a direct long look, not wanting to see it but slowly trying to accept the unavoidable reality.  I would take quick peeks every now and then, and still every time I was surprised by what I saw, that’s not me is it, FUCK! When I put my hand to my chest, so familiar it used to feel. As it went closer and closer with anxious curiosity, expecting to feel my breast, it hesitated as the unfamiliar empty space was entered. This empty space… it means again cancer is winning, for now! it means I feel less than a woman, again! it means forever I will have this emptiness.

So because I only had one boob removed, my remaining boob still needs a bra… I left the house on a couple of occasions feeling awkward. I did not buy anything to wear post surgical because I really was not able to think about the after and partly because I didn’t know what the hell to buy. My surgical site was so tender and I couldn’t wear anything I had at home so off into the world au naturel it was! My one side obviously empty and the other boob flapping in the wind. I felt obvious and vulnerable, again cancer announcing to the world, this body is my bitch! Now here is where planning ahead would have really come in handy. There is a website for knitted knockers! It takes a little while to get them so I suggest ordering before you go in for surgery. These things are amazing and free!!!! Check out the website for these awesome confidence building boobies!!!  http://www.knittedknockerscanada.com/

It has been 3 weeks now and my physical healing is going great! My mental one is still in the works but it is a lot easier to accept now than it was, like anything in life change needs time and time heals! I bought a bra and have stuffed it with socks lol! I am still waiting for my knitted knocker. I have also looked into prosthesis. I have heard they can be uncomfortable to wear and are quite expensive but do whatever you need to do to feel better!  Ontario does have a grant for a chunk of the cost if you are interested here is the link  https://www.ontario.ca/page/breast-prostheses-and-artificial-limbs

I am irritated about future clothes shopping! Trying to figure out how to camouflage my cockeyed chest for the rest of my life. I have already had a lifetime of trying to conceal my fat and now I have to fabricate the illusion of “normal” breasts!

I wonder if my golf swing will improve! 😉
Today I will own it! Battle wounds and battle scars, we all have them let us not give them the power to define us or rule our lives! Whatever life throws at us remember just carry on my soul sisters and brothers we are alive to fight for another day!!!

Laughter, life and love to all xox