#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.

 

…you will grieve forever.

Last year my son had been asking me for a playdate with one of his classmates over and over. My answer every time was ” I need to meet his mom first.” In the spring last year I  finally met Sandra on the playground each of us picking up our boys from school.

I remember the sun was out and she was wearing a beautiful scarf. I can’t remember how we started our conversation but it flowed so easily. Within minutes she had disclosed to me she had been diagnosed with cervical cancer not to long ago and was in the process of separating from her husband.  She said she wasn’t sure why she was telling a total stranger this as she was a private person but she felt like she could. I then told her about my own similarities to her. How my own divorce was very fresh and that I too had dealt with cancer (albeit a different kind and a long time ago) We hugged, exchanged numbers. I told her to call me, that she could call me to talk or vent or get her mind off things.

A few days later my phone rang and I was pleasantly surprised to see  it was Sandra. She said she had been in a funk, wasn’t dealing with her diagnoses well and was taking me up on doing something fun. To know that she felt like she could reach out to me meant a lot.  It wasn’t long after, that her and her son were over for a playdate, dinner and a campfire. We sat around like normal parents and just talked while the kids ran around. As she was about to leave I felt a huge urge to give her something I hold dear to me, my trust rock. This is a rock that was beautifully painted for me by a friend when I was pregnant with my last child.  It’s like something inside me was yelling that she needed it more than I did. We hugged and cried as I gave this women I barely knew something I cherish and I told her to trust herself.

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painted rock with trust

I wish I could say this forged a tight immediate friendship. What happened though was life. I was busy, she was busy. School ended, summer started and she started treatment. For some reason something held me back from really reaching out more even though she crossed my mind a lot. Maybe it was my own fear. In her I saw my worst nightmare come true. Cancer at 14 is not the same as cancer as a mother with young kids. School started again and I was excited to see her, talk to her and hug her. The day after her last treatment is when I got the news of my own new cancer diagnosis. I knew I should tell her and I simply didn’t know how. They say news travels fast, in a small town news travels even faster. Soon on the same playground, at the same spot we met, picking up our kids from school she came up to me and hugged me, she had heard. We held each other and cried, I hated that we both understood each other so well.

As I went through surgeries and chemo, Sandras name would pop up on my text messages just when I needed it most. ” thinking of you”……”sending you pure love”. She even came over with dinner for my family one night. The fact that she could think of me and do for me so soon after her own cancer journey blew me away. I didn’t feel worthy of her goodness and selflessness.

This past spring I discovered both our boys were on the same baseball team. I knew I was going to do better and get to know this wonderful woman. Sitting on one of the baseball bleachers early in the season she told me that a couple months before the Drs let her know treatment hadn’t worked, her cancer had spread and there wasn’t anything they could do. While I heard her words and I knew they were true I don’t think I really believed them. She still looked so healthy, so full of life, so vibrant. We sat next to each other almost every Monday and Wednesday night this baseball season. She sang silly songs to my girls and they sat on her lap. I got to know more about her on those baseball nights, and I looked forward to them. She understood me in a way very few people did. We both knew the struggle of being moms with cancer. We could both say how done we were with everyone wanting us to be positive when sometimes all we wanted was to cry or scream. How sometimes all we wanted was to be “normal” She would sit in my car and we would just say things you can only say to someone else with cancer.

On a Saturday not to long ago I was standing in my kitchen when my partner came down holding my phone. ” Sandras messaged you like 5 times, you need to see what she needs.” I opened my phone and the wind was knocked out of me. Her cancer had spread again, this time extensively to her brain. I sobbed, caught my breath and sobbed some more. The next days were intense, processing, grieving, crying, screaming and planning her end of life. I was consumed with helping her and loving her. Not even 2 weeks later she was in the hospital, as I packed for my vacation I got a text from one of our mutual  friends, ” you need to go visit her before you go.” I called her, I wanted honesty…..”am I going to say goodbye?”

I went up and spent 2 hours with Sandra. I rubbed her legs, gave her water and talked to other women who were visiting and loved her. She slept almost the whole time.  When I had to go I asked for some time alone. I put down the bedrail and crawled in next to her. I stroked her hair and told her how beautiful she was, how loved she was and that we would all help look out for her kids. I sent all my love into her and then I walked out the door. 4 days later I got the call, she was gone. She had gone peacefully.

Her death has left my heart both heavier and lighter. This pure and beautiful women is finally free of the pain she had been in, she wasn’t alone, she left this world in the most loving way possible and I think that’s something that brings all of us comfort. We will all miss her though. We will all wish that she was the one watching her children grow up. We all wish we had selfishly gotten more time. We will all grieve for her forever.

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Why does my knee hurt? Part 1

The first time I remember my knee hurting was the summer of 1997.

I was 13 and would turn on Spice Girls or No Doubt and dance around my backyard. I  figured my knee hurt because I was NOT a dancer.  I was a clumsy kid having fun during summer break. It got to the point though where the pain changed. I went from thinking maybe I hurt myself, to maybe growing pains, to something is wrong. One day when the pain hit harder than usual I asked my mom to take me to the DR. We went to the ER where I begged for an X-Ray and was told instead to buy some new shoes. I was blown off and treated like an over dramatic teen.

The weeks passed. I started grade 8, my mom gave birth to my baby sister, I turned 14 and my leg was hurting more and more. It got to the point where rumours started at school that I was a hypochondriac and I was just looking for attention. The bullying was horrible.

Then it happened, one day while playing basketball I was pushed. My knee slammed onto the gym floor and started swelling. The swelling wouldn’t go down. Finally a DR took me seriously and I was told I would need 6 weeks of physio.  6 weeks of almost daily physio and al that happened was the pain got worse and my knee got bigger. I took a break for a Christmas and to visit family. One night I woke  crying in pain, I begged for my mom to do something, anything. I cried “please just cut it (my leg) off” we came home  and went back to the Doctor. An x-ray and Ultrasound were ordered. When the day came and I had to leave school early for the appointment I was excited! I was so happy, finally I was being taken seriously. Finally we were going to find out what was wrong. Finally I would be able to prove I wasn’t an attention seeking hypochondriac.

The next day January 22, 1998. I was blissfully unaware what was happening at home and that soon my world would come crashing down. Instead I enjoyed the unusual sunshine, hung out with friends, got excited for the upcoming school dance and walked home.

I knew something was wrong when I noticed my mom was waiting for me, she saw me walking up to the house and opened the door with my baby sister on her hip. She told me to put my backpack away and to sit down. I started racking my brain for what was going on. Was I in trouble? What had I done? My mom started crying as I sat down ” Analyn, you have bone cancer.”