My Story….in pictures

When Kendal first reach out to me a year ago about her idea to start documenting I honestly didnt know why. I was very up front and told her that the story was mostly done. I had had my double mastectomy, chemo was done and while I was still mostly bald hair was definitely making a come back. While I still had a couple surgeries ahead I was already feeling the pressure to get back to normal. The rush to put cancer behind me. I really thought I had nothing to say and she wouldn’t have much to document. These last few months have very much proved otherwise. 16 months since I lost my breast  (has it really been that long?) Over a year since chemo and things are…different. They haven’t gone back to before. In some ways things are much better and in others I still struggle… a lot actually. Cancer will never be in my past but ingrained into the very fabric of who I am and I’m excited to share that and more. The more because I am so much more than cancer, so so much.

Check out the start of Kendals project here

My story through Kendal

 

#pinktober

It’s pinktober- the time of pinkwashing and a false sense of awareness of breast cancer. A time when companies profit off this horrible disease. Did you know breast cancer is the most marketed cancer? Did you know most of the time it’s mere cents going to cancer research? Did you know that even with all the advancement in treatment the number of women who die every year has remained constant?

Breast cancer is not pink or pretty. It’s not harmless. It’s not a “good type of cancer”

All the marketing has done more harm than good. It has made a horrible disease looks easy. It has downplayed the trauma of having your body ripped apart. It’s made people think it’s more treatable than it really is.

Did you know catching it early doesn’t mean a lot? That 1 in 4 women diagnosed with earl stage breast cancer will later be diagnosed with stage 4. That metastatic  breast cancer is not treatable?

This is a small part of what my breast cancer looks like.

It was fear and tears.

It was feeling like I could’t breathe.

It was crying myself to sleep almost every night.

It was making hard choices.

It was advocating for myself.

It was PTSD.

It was going from ok to barley holding it together in an instant.

It was thinking that maybe all I have done for my kids and all the love I have for the wouldn’t matter because they wouldn’t remember me anyways.

It was planning my funeral.

It was mourning the loss of a very special inmate part of my body.

It was tears rolling down my face as I lay on the operating table knowing I would wake up with no breast.

It was anxiety at being alone after surgery because they didn’t communicate clearly to my partner.

It my heart breaking every single time some asked me why I decide to cut all my hair off.

It was being humbled at the amount of people that wanted to help.

It was being angry that people who work with breast cancer patients day in and out still said the wrong things.

It was relief when my lymph nodes came back clean.

It was breaking down in tears at m first chemo, reliving every one of the 18 rounds of chemo I had for bone cancer.

It was being to weak to walk to the bathroom.

It was injections to help boost my blood count that almost gave me horrible joint pain.

It was being in so much pain I had to be held to fall asleep.

It was running my hands through my hairs and clumps falling out.

It was my kids saying good night from the door because they had colds and couldn’t be near me.

It was snuggling in bed with my children because it was the only way to spend time with them.

It was relying on friends and family.

It was my daughter and I having our breastfeeding relationship taken from us.

It was relief when the PET scan came back clean.

It was anger at having to do this again.

It’s is worry at every follow up appointment.

It’s that my son asks “did they find any new lumps or bumps” with anxiety in his eyes.

It’s my children knowing far to much about cancer.

It’s worry that I passed in this BRCA mutation to them.

 

You really want to help women with breast cancer?

Donate to places like http://www.metavivor.org

Find the women in your community going through this and help.

 

When it comes to cancer, are we ever really done?

It’s something almost all cancer patients hear when we finish treatment, “are you glad you’re done?”

There’s this idea that once the chemo is over, once the last surgery performed ,that we can just go back to how things were before being diagnosed. That life returns to the same simplicity and normalacy. The truth though is not so simple. I am changed, trauma changes people and there’s no getting around the fact that cancer is trauma. It’s trauma on the physical as well as the mental and emotional. Most of my time spent in treatment was spent almost hyper focused on the now. Getting through this day, this hour, this minute. Getting though this pain. Getting through this constant fatigue and chemo brain. There are times when I was so overwhelmed  with pushing though that I would have to stop and ask myself “what do I need to get just through right now?” It makes it hard to process what’s really happening to you when all your energy is spent getting through just one moment at a time.   IMG_6508

Sometimes I could trick myself into believing life would just go back. Daydream about life after chemo. Sometime even now in the day to day of life I can pretend my life is a lot like anyone else’s. That is until my shoe falls off my prosthetic foot, or until someone makes a comment on how my hair is coming in. It’s strange to go from putting away laundry to feeling like the air has been sucked out of you because it jumps into your head ” HEY! YOU’RE THE ONE THAT HAD CANCER, IT WASN’T SOMEONE ELSE.”

The thing is the fist time I had cancer for the most part things did go back to normal.  I really did become a typical teen, a typical woman, a typical mom. Enough time started to pass that check ups became social affairs to catch up with my favourite Doctors and the anxiety of cancer coming back was gone. This time though, there’s is no going back to “before”. I know too much. I know there are no guarantees. I know there is no cured. I will always be at higher risk for reoccurrence, both because of my BRCA 1 mutation and my history with cancer.  I’m forcing myself as well this time to really processing what I’ve been through, instead of shoving it away and pretending it’s a chapter I can close instead of a theme of my life story.  Processing is hard, it has many ups and downs. There are days where I am so fucking grateful I get to live this life. Day’s where I look around  and am in love with just watching my children play, or snuggling into my own bed. Those days I feel like cancer was a weird gift. Then there are days where I wake up soaked in blood because even though I’m in menopause the hormone treatment isn’t quiet working. Days when I want to cry because my children try to whisper secrets in my ear and I can’t hear them because chemo has taken all my high pitch hearing. Those days I seem to focus on what cancer has taken. The funny thing is the grateful for cancer and angry at cancer feelings can come and go as quick as you can turn a light on and change when I least expect it.

I went for my follow up appointment a few days ago and while everything is clear for now I got in my car and just wanted to sob. I brought my kids with me and my oldest asked why we were there, what was the Dr going to do, what was she looking for, what would happen if she found something. When she left he asked “did she find any lumps or bumps?” and look almost relieved but also like he didn’t quiet believe me when I told him “no new lumps or bumps!”

 

There was talk at that appointment of not if but when I get cancer again. There was talk of more surgery due to side effects from my treatment. There was talk of my follow up schedule (every 3-4 months for the next 2 years). There was talk of which scans, bloodwork and referrals come next. There was no talk of done. There will never be talk of done.