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. 

#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.