Why I don’t hide.

I try to take my girls swimming once a week. 

I take them in the Womens change room when I could use the family one or even the disability rooms. 

I get changed with them in the middle of the room instead of behind the privacy curtains. 

 I’ll be honest though, this is hard. It’s one thing to take off my leg at cancer camp or when I am speaking to a room full of middle schoolers. It’s one thing to show my reconstructed breast to other women going through it or through a photographers lens. In a locker room where the people around me don’t know me or my story and have to come up with their own narrative is a lot more scary.

 I have no idea what they think when I take off my prosthetic to drain the water and change my wet stump sock into a dry one. Do they wonder if I was born like this? Do they think it’s gross or weird?

I have no idea if they look at my “breast” and wonder why I would get fake boobs. Or what thoughts they have about my “boob job”

It takes some deep breaths, some telling myself I am safe, some telling myself that what they wonder or think doesn’t matter. But I  go through this process each and every time I go to the pool, each and every time I get changed in a room of strangers. 

I know I am making a choice to do that. 

My choice in changing in a room full of strangers is intentional. 

It is intentional. 

Me dressing and undressing right in the open where other women can see me. I do it because I want to show my girls they don’t have to hide their bodies. I do it because I want them to grow up knowing what body positivity looks like. 

I am making that choice for me, to build my own confidence. To hope that one day I won’t wonder let alone care what others think about me. I hope to raise strong and powerful girls who can say “if my mom can love her body scars, amputations and all then so can I”

Today though the hard was harder than usual. Today a mom was nursing her baby. My girls are not shy and they engaged in a conversation with her. Soon it was talk about boobies. K made an observation “you have boobies.” The women looked at her and said “all mommies have boobies.” I could feel my heart in my throat. I wanted to cry because no, not all mommies have boobies. E piped up “my mom doesn’t, she had hers cut off” The women looked at me confused and half naked in a pool change room I told a small part of my story. Without preparation. Without wanting to. 

It will come up again. My children will make conversation and it will come up that mommy had cancer. It will come up that mommy had her boobies cut off. That mommy has a robot leg. They will hear their mom tell her story and one day they might now how hard that is sometimes and in knowing how hard it is I hope they see my strength. I hope they know I could have hidden but I chose not to. I hope it gives them the strength not to hide either. 

A night of Burlesque

I’ve been to a few burlesque shows. I have loved the glitz, glamour and art of seduction. I’ve always sat in the audience happy with my view from my seat.

Something happened last year though. A shift. A friend asked me to come to the local burlesque show with her. I was still recovering from my double mastectomy and about to start chemo and honestly I was on the fence because I didn’t know how I would feel. The night came and I just wasn’t ready to be out and about. I didn’t want to have people tell me I looked good or ask how my surgery had gone (I live in a small town, going out means being ready to see a lot of people you know)

A few months later my best friend asked me if I wanted to go see Dita Von Teese with her. You can read about that here. It’s what led me from being unable to even go to a show to being on stage a couple weeks ago.

As I practised my solo (honestly who the fuck does a solo their first time doing burlesque) I was so nervous. So many thought went through my head. “Why am I doing this. What if I mess up? What if I throw up” The first time I did my routine in front of all the other dances my heart was beating so loud I couldn’t hear the music. My timing was WAY off, I messed up, but I heard our leader say “keep going!” so I did, I kept going and it was ok. The world didn’t collapse and no one told me I was horrible. I came home that night and practiced over and over. I listened to my song on repeat. The next time we had rehearsal I was better, and the next time after that even better. With each practice my confidence grew, my heart was beating less. I could actually hear the music.

One night after I had practiced in front of my partner he has asked me why I was doing this. My first response was that I’m doing it for other women. That I wanted women in the audience to go “if she can love her body with one leg and reconstructed breast than I can love my body too”  Since then I’ve thought a lot about why I’ve entered this world of burlesque and here are my so many reasons why.

I do it because I don’t just want to find beauty in normal, I want to find beauty in all bodies period.

I do it because I’m told over and over again that disabled people are less worthy and I’m tired of it.

I do it as a fuck you to all the men who told me they would date me “if only you had 2 legs” and anyone else who has shown my pity because I only have one leg.

I do it because I love my body.

I do it because I love to dance.

I do it because I needed to take ownership of that this new body is in fact mine and mine alone.

I do it because I LOVE seeing people with disabilities challenging peoples perceptions of what we can and can not do.

I got on stage and I was addicted. The music, the lights, the audience. I went into another world. I got off stage after and it was all I could do not to burst into tears from the rush of emotions. I did it and trust me I’ll do it again.

 

Introducing…..Ms Eileen Wright 😉

Kendal Blacker PhotographyKendal Blacker PhotographyKendal Blacker Photography

 

 

All photos credited to Kendal Blacker Birth and Photography. Please do not edit or alter in anyway.

Becoming a mom after becoming a survivor

Happy Birthing day today me.

8 years ago today I became a mom. I gave birth to my beautiful son, I heard him cry before I saw his face and I remember trying to etch that sound in my brain. I remember thinking I ever want to forget this sound. They placed him in my arms and life has never quite been the same.

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I would like to say I can’t remember the struggle that my journey to motherhood was, but I can actually take myself back to that place very easily. When I was diagnosed at 14 with bone cancer no one stopped to ask the effects the Chemo, meds, scans, x-rays would have on my reproductive system, especially as I had just gone through puberty. Of course no on asked, we were so focused on just getting me through cancer. We focused on the now, with my future so uncertain the priority was making sure I even had a future. It wasn’t until the dust settled, that I was in remission that I started talking to other childhood cancer survivors. It was then that I found out that some had taken steps regarding their fertility. I always knew I had wanted to be a mom and the realization that it might look different for me took some time to process.

Once I hit my early 20’s I started researching more. I asked more questions at my follow up appointments. What I was told over and over was that while no one could say for sure what the side effects the chemo had, that I was at risk for earlier menopause and if I wanted babies it would be a good idea to start before I was in my 30’s, that when I did start trying to only try for 6 months before seeking fertility help rather than a year. I never imagined myself as someones wife, but I could always imagine myself as someone’s mom. So there I was, single, working, living on my own and saving up. I made a plan. I was going to save all that I could so that if I wasn’t with someone I had a future with at 28 I would become a single mom by choice. I was going to make motherhood happen for me.

A few years later I met the father of my children. I was up front and honest with him. That whether I could have kids at all was a big unknown, but no matter what I was going to be a mother. After we got married, once we were ready to start trying I lost myself. I read books and learned how to chart my cycles. I got up the same time every day and took my temperature. I analyzed and over overanalyzed every possible sign that I might be pregnant. When my cycle weren’t regular I started seeing an acupuncturist. Every month I sat and cried. Every negative pregnancy test I tried my best to hold it together. I got closer and closer to the 6 month timeframe my Doctors had given me. Finally the time had come to go to that fertility appointment. Before it happened I woke up one morning and instead of my period I saw 2 pink lines. I couldn’t believe it and promptly took a digital. the magic word popped up “Pregnant.” It was December and all I could think was this was the best Christmas Present ever. I bought a sleeper and an ornament for expectant parents. I envisioned what it would be like to be pregnant in the spring and have a summer baby. It’s amazing how quick a dream can form and seem like reality. I spent a couple weeks in a state of total bliss, until I woke up one morning to cramps and blood, Too much blood. I called in sick to work and went straight to my Dr’s office. Bloodwork was done and I went home to wait. My best friend came over to keep me company, we watch TV, played games and she hugged me when I got the phone call that crumbled me. I spent Christmas Eve that year having my empty uterus looked to make sure every thing had been cleaned out. I grieved for longer than I had even been pregnant for. Finally I started making plans, I made a list of all the things I wanted to do before having a baby. I was going to live my life and see what happened next. What happened was 2 weeks before my trip to Vegas I found I was pregnant. I asked for bloodwork to ensure my hormones levels were normal and rising (they were) I was actually happy to get my firs bout of morning sickness. I loved every single milestone and was so happy to be the cranky pregnant lady. My pregnancy wasn’t an easy one, no one really knew how things would go with my leg. I started having bad back and pelvic pain fairly early on and at 32 weeks my prosthetic didn’t fit. If I had known how hard my pregnancy would be I still would have done it, over and over (and I did do it 2 more times!). I always say I didn’t fight so hard for my life to not truly live it. Becoming a mom is hands down the most wonderful thing I have done with my life.

 

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Goodbye Cancer,

On November 4th  I “should” have celebrated 19 years cancer free. 19 years ago I had a lobectomy to remove the small tumours that had metastasized to my lung from my leg. Every year since that surgery I have celebrated. Some years it’s been quiet celebrations other years it’s been big and loud. A couple years ago I even told a friend to be ready for year 20 cancer free because I was going to plan something epic. That’s the thing when you’ve been cancer free for so long, you forget that it could always come back. You start taking the years for granted. I mean talking about a party 2 years away didn’t feel like I was jinxing anything of tempting fate.

Instead of celebrating, I’m still struggling with the fact that a few days ago I had another “should” On Nov 2nd the expectations was that I should be celebrating 1 year cancer free really big and really loud. That I should just be shout from the rooftops that I’m grateful I’m alive. And don’t get me wrong I Am. I am SO fucking grateful. I am grateful every single day, even though it may be quieter than people expect.. Every single time I get to sleep in my own bed, every single time I get to snuggle my little people, every single time I wake up and feel good enough to get up and make myself coffee, and make lunches, and yell at my children to get dressed. I am grateful trust me. I am also a person. I am a person that gets sad, a person that grieves. I will never force a smile on my face because society tells me I have to be happy on this particular day. I will never shove down feelings because it makes someone else more comfortable.

I don’t want to celebrate the loss of my breast. I don’t want to celebrate the loss of my breastfeeding relationship with my youngest. I don’t want to celebrate wearing bras 24/7 because of my reconstruction or the fact that I can’t feel my breast. I don’t want to celebrate how much I cringe every time some one hugs me tight because I can feel how  hard and unmovable my reconstructed breast are. I don’t want to celebrate starting over. I don’t want to celebrate what cancer took from me and my family.

There may come a day where I do for dinner and celebrate. There may come a day where I throw big parties. Right now though it’s too soon. I’m still recovering, I’m still scared every single time something doesn’t feel right in my body. I still hold my breath at every appointment and come home emotionally drained. The first 5 years my chances for reocurrance are high and I’ll be honest doing something big feels like a challenge to cancer. It feels like I AM testing fate or jinxing things when I celebrate being cancer free.

The things is when you’ve had cancer 3 times in 20 years you lose the optimism. You lose the “Im going to beat cancer” attitude. Not because we’ve given up, because trust me I haven’t. But because the perspective  goes from one of optimism to realism.  We know too much, we’ve seen too much. I know that I can never smoke a day in my life, I can limit my alcohol intake, eat healthy, exercise and do all the right things. Heck one of the many reasons I wanted to breastfeed so bad was because it lowers the risk of breast cancer. Well 3 babies and 7 years of lactation didn’t help me so much. I’ll be honest when I was first diagnosed I was angry about that. I was angry that I worked so hard doing things to lower my risk and I STILL got cancer again.  Here’s the thing while I’m sure doing certain things can help, but at the end of the day cancer doesn’t give a shit. Cancer didn’t care that I already had childhood cancer. It didn’t care that I have 3 small children, it didn’t care that I was in the happiest time of my life.

So just like I don’t need Valentines day to show my partner how much I love him and how much he means to me. I don’t need a day to show my gratitude that I am right now cancer free. I show it every day. Every time I hug my kids extra tight, every time I giggle when I brush my hair, every time I do something that pushed me out of my comfort zone because fuck it you only live once. Every single day that I open my eyes, I am celebrating being cancer free.

October is over and thank goodness for that!

It’s no longer October!! Thank fucking goodness.

October used to be my favourite month of the year. All in one month there are my 2 most favourite holidays (thanksgiving and Halloween) and my birthday! There is something to celebrate almost every weekend.

This year I’ll admit was it was hard. In between the fun and celebrations, in the moments of every day living I was constantly assaulted with the pain of my trauma. There was pink fucking everywhere. I tried to escape for a weekend and went on a trip with my partner. I got on the plane only to be served drinks on napkins with pink ribbons, to walk in an airport COVERED in banners of pink ribbons. I tried hard not to jump to conclusions and every time I saw something else promoting pink and support of breast cancer I would research. How are they helping? How are they bringing awareness. Not ONE product made reference to self exams or mammograms and a large majority supported charities where less than 10% actually goes to research. Each time I checked and each time I realized how much money companies make off this disease my heart dropped.

I found myself taking a lot of deep breaths. This month I got angry, and I got sad. My family was affected because I was affected. I lost my patience more and I struggled HARD. I struggled so hard to take care of myself and I feel like I failed over and over, I would work through one trigger only to go out in the world and have my face shoved into the next.

Can you imagine going through a trauma and having that trauma shoved in your face for one whole month. Where you can’t even go to the grocery store for bananas without seeing a sticker that represents your trauma. Or go to the bathroom without seeing how yet anther company PROFITS from your trauma. Can you imagine the anxiety, triggers and PTSD you would have to deal with because in “support” of you people are actually causing MORE harm. 

Knowing people profit off a disease that kills thousands of women a year makes me sick. Knowing that people are willing to put countless women through the experience of relieving their trauma so they can feel good makes me want to cry.

For the first time I in my life I’m happy to be saying good bye to October. I’m happy that this month I will take less deep breaths and that I will feel more present for myself and my children. Because breast cancer awareness should be about helping women with this shitty disease, not harming them more.

Body Positive??

I used to walk around my house naked. blinds up, windows open. I didn’t care. When other were busy covering up I was letting it all hang out.

I don’t do that anymore. Ever since my last surgery I have to be in a sports bra almost 24/7 for the next few months. It’s been an adjustment. Going from someone that takes my bra off the second I can, finding them the next day under the couch and in the corner of the living room to always having it on my body. Being naked so much meant I often caught glimpses of my nakedness in the mirrors or reflection of widows. It means I had an intimate knowledge of my body and what it looked like and how it moved.

Breast cancer and my surgeries have taken the once intimate knowledge I held. The other day I was in my closet where the only full length mirror in my house exits and I got naked and I looked. I turned, I made myself look at each part of my body individually and then pulled back and looked at it as a whole. I don’t know why but it felt so important to look at myself and really see.  It no longer felt like mine, and I so badly need it to feel like mine. It’s taken me months to really look at how my new breast have settled. To really see the dimples in my implants. To look at the new stretch marks created by steroids from chemo.

A few months ago I went to a Dita Von Teese show. My best friend and I bought tickets months before and it ended up that the show was a mere 2 weeks after my exchange surgery to swap my tissue expanders to implants. I sat there loving all the beautiful and natural bodies, but there was a part of me chocking back silent tears. This was a celebration of the various body types, all the ways to show that normal bodies are beautiful bodies. It’s an important message for sure, but it’s one I feel very left out of.

I looked down at my fake breast stuffed in my corset, seeing every simple hardness and imperfection. I sat there  watching and wondering where the scars were. Where the disabilities were. Where the mastectomy breast were. My body is not in the range of “normal.” While every one is shouting the beauty of stretch marks and cellulite (which lets be honest we ALL have) I wanted to know where were the voices shouting the beauty of disability? The beauty in sheer survival etched in skin. Where were the breast that didn’t bounce because that beautiful softness had been forcefully replaces with hardened implants. Where were the women who can’t dance so gracefully because they are in wheelchairs or amputees? If something happened to anyone of these women in the same way it had happened to me, if parts of them had been slowly cut off and replaced by artificialness would they still be happily shouting about loving their bodies?

It opened my eyes once again, that if I want to see the beauty in these things I have to be the one to put it out there.

I have been asked to be in the local burlesque show coming up. I said yes almost immediately and felt that maybe it would be healing for me because it’s so close to the one year anniversary of my double mastectomy . Today though as I was  driving and thinking about it, I burst into tears. Going up on that stage is me reclaiming my body as my own. It’s saying fuck normal. It’s saying there are many ways to be confident and secure and beautiful. Hopefully soon it will get me back to walking around naked, blind open, windows open for all to see.

 

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Breastfeeding to breast cancer.

I wrote these words only a few weeks before I knew. Before I knew that my intense nursing aversion was because of the cancer growing in my breast. Before I knew was that the same vessels that were nourishing her life were growing a tumour that wanted to take me.

I had so many thoughts and dreams of how our breastfeeding relationship was going to go. She was going to be my one child that would get to self-wean. She was going to set the time and pace that she was ready for. I was already struggling so hard with thoughts of weaning her, so conflicted. Having the choice made for me was just one more way I felt so out of control. I stopped nursing the second I found out. I put cabbage leaves in my bra, I drank cold medication all in attempt to dry my milk. My milk had to be gone in time for my double mastectomy. She cried a lot, if distracting her didn’t work with a gentle weaning process is definitely wasn’t going to work in a cold turkey weaning process. My surgeon told me when they cut my breast open milk poured out, they wondered if I had actually tried to dry up my milk at all. They had no idea the agony I has gone through. It’s a year later. She still talks about momma milk. She still mentions that it’s all gone. Until recently she even still put her mouth when my nipples used to be. Each time it breaks my heart.

 

Breathe in and out, breathe in and out, snuggle, kiss, grimace, distract myself, kisses, breath, relax, relax, get off, get off, get off.

These are my thoughts in my final days of breastfeeding my final baby. My day is a constant struggle of  holding onto this time. Of trying to push myself through just one more day, one more nursing session, and at the same time wanting so badly to be done.

As this chapter is coming to a close I’m having some very real reactions to it. I am processing, I am celebrating, I am grieving. When this last baby takes her last drink of milk there will be no one to take her place. This feeling has come as a surprise for me. I felt complete the moment I saw two pink lines with her. I’ve watched her go through milestones and have jokingly said that I don’t want her to grow up, while also happy to see what’s next. This milestone, this end has brought me to tears more than I expected. Maybe it’s because this is so far from how I imagined the end of my breastfeeding journey, so far sooner.

My goal was to nurse her until 2 and beyond, my goal was to let her self wean. It wasn’t even a goal so much as something that I was just going to do, I mean I have nursed two children before. I’ve been coming to terms with the fact that I won’t reach either goal. Her latch is terrible, she moves constantly as most toddlers do and accidentally bites me almost daily. She grabs at my top and screams in my face for “mine boobies”, she twiddles my nipples and demands, demands, demands  and I simply can’t do it anymore. I’ve tried to wean her as gently as possible, slowly reducing how often and how much, singing songs to signal the end. Giving more snuggles. Still she is having a hard time with this and it breaks my heart. Distracting her is hit and miss. Her screams are more intense, her grabbing more insistent and her biting intentional each time I tell her no, each time I say “all done boobies.”  It makes me wonder if I am making the right decision, and then she nurses and I feel anxious, I’m doing all I can not to push her off and I remember this has to work for me to. The truth is it’s not.

My body has been shared with another person for 90 months. For approximatly 2,750 days I have either been pregnant or breastfeeding with no breaks. I have had the joys of knowing my children from the inside, of feeling their kicks and tumbles, I have watched my belly jump in awe. My body has brought them earthside, where they have snuggled in and suckled at my breast. They have been nursed to sleep. They have been breastfeed through growth spurts, colds and scraped knees. My body has been a place where three children have been nourished and comforted. What will it be now? 

I’m  trying to find the silver lining to this end. To see my new beginning. Of not having to plan outfits around access to my breasts, of being able to go out of town and not pack my pump, of my first week long kid free vacation, of having some freedom. I’m moving into a new phase of motherhood and I’m embracing it as best as I know how, with some tears, apprehension and the possibility of what’s next.