Why does my knee hurt Pt 2

It’s funny as much as I can recall the day I was diagnosed with bone cancer after the words were out there it’s suddenly a blur.

I mean I can see the sunshine of that day. I can see my mom with my baby sister on her hip. I can remember walking home from school. I can even remember how I felt. So light, carefree and excited.

After my mom told me I had cancer she cried and then I cried. My dad walked in the house and looked at me and said “Sorry Daughter”

I can’t tell you what happened after that though. What did we have for dinner? Did we even have dinner that night? Where was my little brother? What did we talk about? Who else did we tell? The more I try to remember the darker it gets. I do know later that night I felt it was important that I tell my 2 best friends. I felt pretty calm and called one friend, she didn’t answer. Then I called the other. The second I heard her voice I started sobbing.  This wasn’t crying because everyone around me was crying. These were my first real tears over the fact that I had cancer. It hit me hard and I couldn’t get the words out. Thankfully my mom was right there and she took the phone, I have no idea what she said or how the conversation went, all I could do was cry.

The next few days went in the same blurred fashion. We were thrown information at us faster than it could be processed. We met with oncologist and surgeons. I had bloodwork and endless scans and x-rays. We learned words we had never heard before. Plans were made, things went so fast. It was learned that I probably had Osteosarcoma (surgery would confirm that) and that my tumour was big, approximately the size of a softball. I was lucky it hadn’t spread anywhere else and very lucky that with how unstable the tumour had made my bones that I hadn’t broken my leg.  To ensure I didn’t break leg before I started treatment I was either in a wheelchair or on crutches. In the blink of an eye I went from the girl that dances and jumps around to being so careful and cautious. I remember the days being so long and coming home and just sleeping. I wanted to escape so bad.

Escape though would not come. Instead I went to what would end up being my last day of 8th grade. On the one day I didn’t have to be at the hospital I wanted to be at school. I wanted to be the one to tell my peers what was happening. We gathered in the library and I told everyone I had cancer. It was the first time I had said it out loud and I didn’t cry. Everyone asked questions and I answered what I could. As badly as I wanted to spend the rest of the day with my friends, unfortunately  between the rain that day and my crutches I fell and the fear that I would get hurt outweighed me getting one last day as a normal teenager. I went home, I napped and I truly became a cancer patient.

Next would be putting the plans into action. Surgery, chemo, more surgery and more chemo. It would be a long year.

 

 

2018 in Review

I have a friend who does this every year and I love it. I asked her if I could steal her questions. I think what I love most is her honesty, her ability to be real about what the past year has really been like, all the ups and downs.
So now here we go, my 2018 year in review.
1. What did you do in 2018 that you’d never done before?
  • Had my ovaries removed
  • Went through surgical menopause
  • Had breast reconstruction completed
  • Went to Great Wold Lodge
  • Drove to Alberta
  • Connected with other young adults with cancer
  • Danced my first burlesque show!
  • Went to Tigh-Na-Mara and did a full spa day
  • Float plane ride
  • Embraced my new body and showed it off
  • Sang Karaoke
  • Started my blog
  • Went to the unicorn bar in seattle
  • Rode in an Uber
2. Did you keep your new years’ resolutions and will you make more for next year?
I’m not big on New Year’s resolutions. I set different goals for myself throughout the year and I’ll be honest I did try but didn’t do as well with them as I would have liked. I am continuing on with some of my goals and setting new intentions.
3. Did anyone close to you give birth?
None of my friends or family close to me had babies this year however I did start attending births again in September and got to be a part of the birth stories of 3 beautiful babies. Very excited for a special birth that’s coming up and growing my business more. Have some spring babies to look forward to.
4. Did anyone close to you die?
Yes. My friend Sandra passed away this summer and her death has left a permanent mark. I keep thinking I see her randomly and have to tell myself it’s not her.
5. What countries did you visit?
Only the USA – Washington state and Texas
6. What would you like to have in 2019 that you lacked in 2018?
Health and Energy
7. What dates from 2018 will remain etched upon your memory, and why?
January 30 – Finished Chemo for the second time in my life
April 19- ovaries removed and the adventures of early menopause
November 10- burlesque show
8. What was your biggest achievement of the year?
Getting on stage for my burlesque debut. A few months prior I couldn’t even go to a show and watch women who loved their bodies let alone be one of them.
9. What was your biggest failure?
Being on my phone too much.
10. Did you suffer illness or injury?
2018 was about finishing what I started with my cancer treatments. Every day/month has brought me closer to feeling better.
11. What was the best thing you bought?
Anything that created an experience/memory
12. Whose behaviour merited celebration?
My Kids. As hard as it can be to be a mom, and as much as they challenge me they also are some of the best people I know. We have been stopped more than once this year to have people comment on how great the kids are. They have big hearts and watching how much they love and help those around them makes my heart happy.
13. Whose behaviour made you appalled and depressed?
I’ll keep that to myself.
14. Where did most of your money go?
Day to day expenses, family vacations, self care
15. What did you get really, really, really excited about?
Getting rid of my tissue expanders, GWL, Texas Ren Fest, Seattle/Blue Jays trip.
16. What song will always remind you of 2018?
I Put a spell on you- def not a new song, but one that will remind me of this year.
17. Compared to this time last year, are you:
i. happier or sadder? happier ii. thinner or fatter? thinner iii. richer or poorer? the same
18. What do you wish you’d done more of?
Played outside
19. What do you wish you’d done less of?
Screen time
20. How did you spend Christmas?
With my kids my love , my brother and sister and her boyfriend. Opened presents, played and napped.
21. Did you fall in love in 2018?
Over and Over again
22. How many one-night stands?
Zero
23. What was your favourite TV program?
 Survivor, Scandal, RuPauls Drag Race, Outlander
24. Do you hate anyone now that you didn’t hate this time last year?
No
25. What was the best book you read?
I don’t think I actually read a whole book this year and that makes me really sad because it’s def a first. My brain fog has been bad and I will pick up books read a bit and can’t focus. Something I hope to change this year.
26. What was your greatest musical discovery?
Can’t think of anyone
27. What did you want and get?
Time away with my love and time away with my kids
28. What did you want and not get?
a better co-parenting relationship
29. What was your favourite film of this year?
Small town living and being a busy mom means I didn’t go to the movies this year. I did really like Dumplin on Netflix. Man I need to get out more.
30. What did you do on your birthday, and how old were you?
I was at a birth! I had been there since the day before and made a joke that I was going to have a birthday buddy. Pulled an all nighter and baby boy came earthside in the afternoon. I came home just in time for dinner and mug cake with my family, took a bath and fell into my bed. Was def a birthday to remember!
31. What one thing would have made your year immeasurably more satisfying?
Stressing less. Recognizing that there are just something not worth my time and energy.
32. How would you describe your personal fashion concept in 2018?
Comfortable Leggings and converse.
33. What kept you sane?
My children (although they helped make me insane so…..) my love, snuggles on the couch, the women who have ket me soul my heart out to them, my small getaways.
34. Which celebrity/public figure did you fancy the most?
None that I can think of
35. What political issue stirred you the most?
Too many to count.
36. Who did you miss?
My New York Family, my mom.
37. Who was the best new person you met?
All my YACC (Young Adult Cancer Canada) people.
38. Tell us a valuable life lesson you learned in 2018.
So many lessons. Be more mindful. Embrace the moments. Be more gentle with everyone, myself included.

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.