Your Dreams Miss You

‘All the lanterns are lighted, the kids are invited, all chorus united, PINATA!’

 

My class was chosen to represent ‘Mexico’ in our ‘Around the World Christmas Concert’ in grade six. The lyrics above are just a few of the gems from the tasty lick that we were given. It was an awful song and at the peak of our social suicidal fears, we had to get up in front of all the cool grade sevens and eights and sing our hearts out to a song that quite honestly, we all mocked.

 

Every year, at Christmas time, I think about this song. It makes me smile. It makes me think of one of my best friends, Heather, who detested the song more than any of us and made her thoughts and opinions quite well known (as we all snickered about what she was saying). This song makes me think about my childhood, my naivety, and the time I showed up in a long floral print dress for my debut in the Christmas choir although it was painfully obvious when I walked in that the uniform was simply black pants and a white shirt.

 

Christmas is my favourite time of year. I love being with family, celebrating life, laughter and childhood and having an excuse to give presents. I still believe in the magic of Santa and the thought of being in bed early to ensure that he stops at my house encourages me to call it an early night every December 24^th.

 

It wasn’t until last year that I experienced the most magical Christmas of all. You often hear people say that their lives flash before them when they are faced with  a traumatic experience. When I was first diagnosed with cancer, it was my future that flashed before me; everything that I hadn’t accomplished or experienced rushed through my mind and this included the next sixty Christmases. Last Christmas was filled with a few tears because back in March, I wasn’t sure if I was going to see Christmas and here I was loving it just as much as I had loved every other Christmas. December 25^th is my survival marker – when it’s Christmas, it means that I’ve made it through another year.

 

As I have learned at an early age; you only get one crack at life, money is just an object, and there are no guarantees so don’t wait your whole life to start living. Based on these life lessons, this year Keith and I decided to head down to New York City to experience Christmas in The Big Apple. I thought I knew about the magic of Christmas, well my friends, I knew nothing until I crossed the George Washington Bridge and entered the land of Manhattan.

 

Keith and I were there for four days and explored the hell out of the city. We did all the touristy stuff during the weekdays and left the walk up 5^th Avenue and the tree at Rockefeller Centre for Saturday. Oh, and on Friday night, we went to see A Christmas Story on Broadway (that’s the movie with the little boy named Ralphie who wants the Red Rider BB Gun). Ugh! It was flippin’ amazing.

 

On Thursday, as we walked through the streets of Greenwich Village, I spotted a little girl singing Frosty The Snowman while she was holding her mom’s hand. It made me think about that time in my life, when I was little, when the thought of cancer never crossed my mind – mostly because I didn’t know what it was, but partially because I was too busy thinking about the amazing life that I was going to live. When I was this little girl's age, I thought about my future husband, my future kids and my future career. I dreamt about my dream home and all the toys that I would fill it with. I never wondered what the inside of a chemo centre looked like, I never pictured myself without a breast, and I knew nothing of this fear of recurrence.

 

The innocence of this little girl, the fact that she was singing like no one was listening, taught me a few lessons. In May, I did a bit of a 'project' where I cut out different words, sayings, pictures, and symbols from magazines and put them into a collage. One of the phrases read 'Your dreams miss you'. I didn't realize how much I had stopped dreaming and how much I had started planning. This little girl reminded me to keep dreaming because if anything, it's a great foundation for what the future will bring.

 

I'm slowly learning that whether I think about a future with cancer or one without, I am not going to be any more prepared to hear the words 'Your cancer is back' - worry and fear do not somehow better prepare us for disaster. In saying that, I feel as though it's this time of year where cancer doesn't get to stand front and centre in my life, it takes a back seat to magic, laughter, lights, family, and warmth.

 

This Christmas will be just as magical as all the Christmas' before and as I lay my head on my pillow on Monday night envisioning sugar plums dancing through my head, I will also be dreaming of my dream career with my dream kids, in my dream home and luckily I already have my dream man.

 

Merry Christmas to all, and to all a good night!

Naturally Normal

On a daily basis, I think different cancer thoughts. I sometimes flip flop between wanting my breast back to the generic 'I'm so lucky to be alive.' What I have started realizing is that although many of my thoughts aren't normal, based on the hand I have been dealt, many of these thoughts are natural. In order to distinguish between the two, I interpret 'normal' as being: average, common, and thought by others whereas 'natural' is more: expected, probable and thought by others in your situation.

I've been thinking about natural vs normal a lot lately and as thoughts drift into my mind, I often wonder if other cancer survivors and/or if people who have never had cancer think these same thoughts. Are these cancer thoughts? Katie thoughts? People thoughts? Or a mixture of all three? (Sometimes I picture some of you reading an entry and thinking 'What the hell is she talking about?'. I hope I haven't lost you this early).

Here's a good one - at least once a week, I think about how long Keith would wait to start dating after I died. I'm not saying someone who has never had cancer has not thought about this, but I highly doubt it's a weekly event. I don't think that's a normal thought however, I feel like it's natural considering I've had cancer. I wonder what his new girlfriend will look like and if he'll talk about me. I wonder if they'll do stuff that we do and if he'll enjoy them as much with her. The weirdest part is that I'm getting used to thinking about this kind of thing. I don't have that same rush of emotion come over me the way I did when I thought about this for the first time - instead, I am genuinely curious about the answer to these questions (here's hoping they stay unanswered forever).

I think about my funeral a lot. Who would come? What songs would they play (this is a really important one for me because I've already picked some out)? How would people remember me? Would I die as Cancer-Katie or as who I was without cancer? I know these aren't normal thoughts (although I will admit that I did think about the VIP list at my funeral before I had cancer because let's be honest, whether I die tomorrow or when I'm 97, my funeral is going to be the event of the year), but they are natural considering that I had cancer.

I know I have written about guilt before, but I still carry a lot of guilt around with me. I feel guilty that my niece has to check 'cancer' on any medical family history forms for the rest of her life. I feel guilty that my mom feels guilty for the cancer 'skipping' her and finding me. I feel guilty for the fear that others have for me, for the future, and for recurrence. I'm Catholic, so I feel guilty for just about everything that I do, but cancer guilt is a new level of guilt. It may not be normal to feel this way, but I've learned, by connecting with other women, that it is indeed natural.

I think about the next time I have cancer. I know that's not good to put that out there, but if I'm going to be honest, I think about getting cancer again. Sometimes, I get a pain in my left arm where my PICC line was by just thinking about going through the procedure again. I envision what my friends will say and I think about how I will respond to people saying 'Well, at least you know you can get through it.' (because I know people are going to say that). I think about chemo and more scars and how I'm going to deal with the needles. I think about growing my hair out just to have to shave it again. No part of these thoughts are normal.

The same way most of us think about our day; plan when Ashley needs to be driven to soccer practice and when Jason needs to be picked up from piano lessons, on top of work, grocery shopping, this weekend's wedding and next week's yard sale, I think about cancer. I plan many futures with many outcomes and depending on what cancer has in store for me, my future will be very different. Now, some of you may be thinking that this is a very sad entry, or that I am 'down in the dumps' but to be quite honest, I am writing this with a smile on my face. Seriously, I can see the reflection of my teeth on the screen as I type... No, I can't... but all joking aside, what I'm trying to say is that my natural thoughts have become my normal thoughts anymore. Thinking these things doesn't make me sad or think negatively, instead they are just my new reality and they are what I think about when I think about the future. These thoughts make me feel naturally normal.

Volunteering Abroad: Being Healed vs Being Cured

Right before my last chemo, I remember thinking that cancer was almost over. I assumed that once the doctors, the hospitals, treatment and tests went away, cancer would go away too and but I learned that it doesn't.

As time passed and the days of chemo were farther and farther away, my physical appearance started looking the way it did before but internally I felt broken. Now that's not an easy thing for me to admit. I'm the one who others come to to fix their problems, I'm the one who can do anything, I'm a 'yes' person, and I not only don't like admitting that I can't do something, I strongly believe that there is nothing that I can't do.

Cancer has left me with this void, an unfulfilled spot in my soul that needs to be filled. You ask, 'what does it need to be filled with Katie?' and I say 'Let me try to explain.' (<----- too much??).

Cancer can quite easily leave you with a sort of post traumatic stress disorder. During diagnosis and treatment, it is common to be in fight or flight mode and while everyone around you is struggling with what you're going through, odds are you're trying to make it through to the next hour without puking. Tomorrow, Saturday night, and next week all don't matter - surviving the chemical warfare of chemo matters. It isn't until the end of treatment when you have to deal with the emotional side because now that you aren't trying to stop from puking or staying up all night with anxiety to only sleep through the day from exhaustion, you have time to think. While you're in the thick of things, you almost don't have time to deal with the psychological aspects of cancer and I think that's why it feels so overwhelming after treatment (which is oddly enough when everyone around you takes a huge sigh of relief and starts treating you like it's over).

Secondly, cancer is about loss. You have to mourn the loss of a body part, potentially. You need to mourn the life that you used to know. In my case, I have to mourn the body that I used to have. To be quite honest, I have to mourn naivety. I liked it a lot and I don't have it anymore. You could compare that loss with the loss of a loved one; a parent, a child, or a sibling. I am not saying it's an exact comparison, but the idea that I am trying to get across is that a year after a loved one dies, you aren't 'over' the trauma and the pain is still right there. As time passes, the pain may not be as fresh but it doesn't mean it's not there. That's the way I feel about having had cancer. Sometimes I feel like my friends or family may think, 'God, why is she STILL talking about cancer, treatment ended over a year ago' but to be honest, the pain is still there. To be fair, once you've had cancer, your perspective changes and what's important to you shifts so the idea of being the same Katie that I used to be doesn't seem possible.

There is no right way to do this cancer thing and I mean that to include; your reaction to your diagnosis, surgery, treatment, survivorship and so much more. You have no idea if your thoughts are totally crazy or totally on par with what others think when they are at the same part as you are in your 'journey' (I still shutter when I write that word. I really don't like it). I knew that the transition period between patient and survivor was difficult for most, but what I didn't know was what I needed to help me through the other side of treatment.

A few months ago, I read a blog post by the amazing Terri Wingham. She talked about wanting to take twelve cancer survivors to India where they could volunteer for two weeks and by helping others they would be helping themselves. Now when I read this post, I thought I was just reading some of Terri's wonderful writing but when I ended up in tears by the end of it, I knew that I needed to be part of the adventure.

Going to India, looking into the eyes of a woman who speaks a different language, comes from a different background, and was most likely not given the same opportunities that I have been given in life, will provide a connection and a unity that someone who has never had cancer cannot understand and although we won't be able to communicate with words, we will understand each other's pain. The thought of that makes me feel the healing power of this trip.

This trip means a lot to not only me but also to future cancer survivors. It is so easy to feel the most isolated and the most alone after treatment ends because for months you have been monitored on a daily basis and now it's a simple 'See you in three months' and your body is totally left to betray you again. This foundation will help fill a huge void in resources for survivorship and a huge void in my post-cancer life.

I would really appreciate your help in getting to India. I am currently trying to fundraise $2400 to be able to go on this adventure. Any donation would be appreciated - if everyone who read this post donated $10, I would reach my goal in a heart beat. Donate Now

I realize that not everyone can afford to donate money and if that's the case, please spread the word about this amazing opportunity to other cancer survivors. This is the beginning of an incredible adventure for future survivors and an essential part of surviving survivorship. Please pass on this link http://www.afreshchapter.com/delhi-2013/delhi2013-expected-outcomes

I know from having taught in grade school and ESL at my university that quite often the teacher becomes the student and quite often, I felt like I learned more than I taught. I anticipate that India will provide the same outcome. I hope to spread laughter and kindness and hope but quite honestly, I believe this is going to be a life changing experience where I will learn much more than I will be able to teach.

Surviving Survivorship Part Deux

I have heard people call cancer 'a gift'. I'm not even kidding, some people refer to cancer as a gift. I think of a gift as something that I would not only like to receive but also something that I would like to give to my family and friends and I can safely say that cancer therefore doesn't qualify. The idea behind the concept is that once someone has had cancer, she develops a new perspective on life, she makes lifelong friends through the experience, she doesn't take life for granted, she lives in the present and doesn't worry about the future, et cetera, et cetera, et cetera. And, I will admit that cancer has been a great teacher and that I have learned life lessons in my twenties that I would have otherwise not learned until my fifties or sixties however I will never refer to cancer as a gift.

Most of the time, I am able to focus on what I have learned from cancer and live life accordingly but every now and again the thought of not making it to thirty because of a cancer sequel creeps into my mind. To be honest, the farther away treatment gets, the less and less I think about it coming back. Don't get me wrong, it's still a daily thought process but it isn't an hourly one anymore and I'm hoping in another few years, it is more like a weekly thing instead of a daily thing. I try not to focus on it because it's not like if I worry about it every day that I will be more prepared for the doctor to say it's back. This is the best way I know how to describe it; once you're diagnosed with cancer it is terrifying not knowing what is coming your way and how you will be affected by all of the poking, the prodding, the surgeries, the appointments, the mental game and everything in between. But, once you've had cancer, once chemotherapy isn't just a word, it's instead a past experience, being diagnosed for a second time means you know exactly what to expect and nothing terrifies me more. Recently, I saw an interview with Michael J. Fox and he said 'If you imagine the worst case scenario and then it actually happens, you've just experienced it twice.' Isn't that the truth?

I don't think survivorship is only about the fear of recurrence though either. I have some pretty hefty body image issues now. Seriously, I joke all the time about not having a breast because it's how I deal with it but to be totally honest, it f*cking sucks. It makes my heart hurt to think that the only way that I could stay alive was to chop off my breast. And I know that many people say things like 'Well, at least it was your breast and not your [insert other body part here]' but I miss her. I miss feeling like a woman or even feeling attractive. My breasts certainly didn't define who I was as a woman but they certainly were part of my womanhood, the same way that being a mother is for other woman (oh wait, cancer may have taken that from me too).

When I pass a mirror anymore, I don't look at my make-up or my hair (really, there's no controlling it) but instead I make sure that my 'boobs' (and I use that word loosely) are straight and I make sure that there is no way to tell which one is real and which one is manufactured in the same factory as stuffed teddy bears and pillows. And my hair, well, I've just given up on it. I don't look like Orphan Annie anymore but it is an interesting look. I try not to worry about it but to be honest I miss my hair. So many people would very easily say 'There is so much more to worry about in the world' and to be honest, I miss my breast more but I think we underestimate the trauma of losing our hair. At the time of treatment, it didn't bother me and even being bald for so many months really didn't phase me but it is now that I am trying to grow it back that I find the injustice of the hair loss of chemo (ugh, especially the thought of having to go through treatment again and losing it all over again).

I think cancer also presents this void in your life once you've finished treatment. I feel as though everyone around me took a huge sigh of relief when treatment was over and managed to translate the end of treatment as being the end of cancer whereas I seemed to look back at what I had just been through and think 'Holy shit, I just had cancer. Now what?' It was almost like it was just beginning for me while it was just ending for every one else. Although the physical warfare is intense, you know that the nausea will pass and the bone pain will lessen but the emotional stuff, it gets suppressed until after treatment. While you're in the thick of things, it's almost like you don't have time, patience, or strength to deal with the emotions that come with a cancer diagnosis and it's not until after treatment, once you stop living day by day (or minute by minute during the bad days), that you start dealing with your diagnosis.

As my physical strength started to return and my hair started to grow back, I stopped looking sick and I was able to go back to work and lead a normal life again except things weren't normal anymore. I don't know how to do anything that I used to do now that I've had cancer. I've used this analogy before but you know how new mothers often explain leaving the hospital with their first child with a lot of anxiety? I have often heard new moms explain it in a way that they are surprised that their medical staff is just going to let them leave with this newborn without a manual and without someone telling them what every coo, and goo goo means. I felt the same way after my mastectomy - 'What do you mean you're just going to let me leave? I don't know how to get through a Tuesday with only one breast. And to be honest, I've never experienced any other day without a breast so you might as well add Wednesday, Thursday, Friday, Saturday, Sunday and Monday to that list. And while we're at it, what's the protocol for holidays?' I somewhat still feel that way now. An example would be when I fly, I often think about my prosthesis (what if they pat me down?). Everything has changed but everyone wants me to be the same. Well, it's not happening. Now, I know at this point all my cancer-sisters are nodding their heads and all my never-had-cancer-peeps are thinking, 'Ok, she's lost it! What the hell is she talking about?' and I'll try my best to explain it.

When I was first diagnosed, like within a week of being told the news, my mom and I were out at a housewares store and the sales rep was trying to tell us about the current promotions and all I kept thinking was 'I have cancer. I have cancer. I have cancer.' Intermittently, my thoughts were interrupted with '50% when you buy the salt andpepper shaker' and 'Buy one get the second for free' but primarily I was focused on cancer. I certainly don't think like that anymore but I still do have a lot of thoughts go through my head that would have otherwise freed up the space to let me dream of my life without cancer. At the same time, although the 'I have cancer. I have cancer.' thought doesn't go through my mind during every waking minute, sometimes I do feel like I am lying or omitting information when someone like a cashier asks 'Would you like to donate a dollar to [insert cancer charity here]'). In this weird way, I feel like I should tell her that I had cancer myself. I think it's because even though you can't tell by looking at me, I still feel like I am in the thick of things and I think in a way that I am; the cancer just moved from my breast to my mind. I still think about it, it's just not in as much of an intense way; now when I think about not having a breast, it isn't traumatic, it's not as fresh and instead it's just sad (and yet normal).

Tomorrow I have a doctor's appointment. It's just a consultation for my future reconstruction but I always fear the look of 'Something's not right' on the doctor's face. I don't know if that fear will ever go away. I just had no concept that even in remission and even after being told that I am cancer free one day, that I will have cancer for my entire lifetime and without writing about it, others won't understand it either.

Does Everything Happen for a Reason?

Is it ok to say 'Everything happens for a reason' to someone who is facing a difficult situation? No, I don't think so either and yet many people have said that to me about getting breast cancer at twenty six years old. For some reason, I don't mind it as much when the person saying this five word phrase is a breast cancer survivor herself but regardless, I feel as though it's fine for me to say this or think it but when someone else says it I want to snap back with 'you have both of your breasts, don't you?' or 'You've never experience the wrath of chemo, have you?'.

I could go on about what people say when you have cancer (actually, I have gone on about it, many times) but instead I want to share a story with you that has made me a believer of 'Everything happens for a reason.'

About a year or two before I was diagnosed, I went to a nutritionist to discuss my weight. Within about 10 minutes of discussing my life, my weight and my lifestyle she had said that she thought that I had something called PCOS (Polycystic Ovarian Syndrome). In order to find out for sure, I needed to get off the pill for three months and get a blood test, neither of which sounded appealing so instead I just assumed she was right and looked into it further.

Two of the most common symptoms of PCOS are being overweight and rarely getting a period, both of which I had. While I was on the pill, I was getting my period of a regular basis but left to my own devices, I had maybe three or four periods a year. I came home after that appointment and did what any normal person does - googled the hell out of PCOS. I read that it was going to be very difficult to get pregnant because my absent periods had meant that I wasn't ovulating. I stared at the computer screen and cried. The more I read, the more I cried.

So what is PCOS, you ask? I took this right off of womenshealth.gov -
The ovaries, where a woman’s eggs are produced, have tiny fluid-filled sacs called follicles or cysts. As the egg grows, the follicle builds up fluid. When the egg matures, the follicle breaks open, the egg is released, and the egg travels through the fallopian tube to the uterus (womb) for fertilization. This is called ovulation. In women with PCOS, the ovary doesn't make all of the hormones it needs for an egg to fully mature. The follicles may start to grow and build up fluid but ovulation does not occur. Instead, some follicles may remain as cysts. For these reasons, ovulation does not occur and the hormone progesterone is not made. Without progesterone, a woman's menstrual cycle is irregular or absent. Plus, the ovaries make male hormones, which also prevent ovulation.

Anyway, I never ended up getting tested and just assumed that I had PCOS. I had prepared myself for a long road of pregnancy difficulties. What I wasn't prepared for was the unexpected obstacle that chemo was about to produce, or so I thought.

Fast forward to March 16th - my mom and I are with the oncology surgeon hearing all about my treatment. I ask if chemo will affect my fertility and she throws out a statistic of 40% - I only have a 40% chance of being able to have a baby after chemo. I burst into tears and the rest is a blur. I seem to black out for the rest of the appointment as I was trying to envision my life without children. I 'come to' in the parking lot as I laugh my way to the car (when things get really bad, I laugh, not intentionally, I think it's just my way of expressing pure frustration - some people cry, I seem to laugh) and saying 'mother f*cker' in too loud of a voice. My oncology surgeon referred me to a fertility doctor that I would see in April.

Keith and I head to the fertility doctor after my surgery but before chemo started. We discuss all of our options with the fertility doctor and I am sent for an internal ultrasound then sent to another doctor who reads the results.

Keith and I are sitting in Dr. C's large office while he reads my imaging results and we hear him say the word 'Excellent'. Keith and I look at each other and what I wanted to say was 'Don't eff with me here doc, I got enough on my plate. What could possibly be excellent in this situation' but I instead sat on the edge of my seat waiting for him to explain himself.

He started with, 'Well, you have something called PCOS.' I filled him in on my prior assumption, he said 'Well, it's no longer an assumption, you have it.' Okay, so?? He continued to explain that the average woman has 24 follicles on her ovaries and I had 60. It just so happens that it is the follicles that get damaged in chemo so even if fifty percent of my follicles get damaged, I will still have more than the average woman. Whoa, he was right, that is excellent!

He then said 'I don't mean to give you false hope but I really do think that you and Keith could have a healthy family after treatment without doing any preservation.' Holy shit, excellent was an understatement.

Months later, I spoke to an oncology fertility doctor and I told her about my situation and she told me about ovarian drilling. In EXTREMELY simplified terms, ovarian drilling is a procedure where a doctor 'damages' your ovaries in order to encourage ovulation. The way it was explained to me was, they go in and damage some of the follicles (because the 'poly' part of PCOS means 'many' and in many cases it means 'too many'). By damaging the follicles, ovulation is more likely to happen. She said essentially, chemo did what ovarian drilling would do for other women.

I kid you not, my periods came back about two months after chemo ended and I have gotten one every 28 days ever since - something that has never happened in my life prior to chemo. Needless to say, I am a bit of a believer in this whole 'everything happens for a reason' business.

My Eggplant Expander

Oh breast reconstruction, how you have plagued me! Ok, maybe that was a little dramatic but it doesn't mean it's not true. Many times I have been asked about the reconstruction choices that I have made and how the process works so I thought I would write about it to explain my experience with reconstruction. I also want to say that I don't know anything other than the option that I chose and for some women, they are quite happy with not having reconstruction- an option that works for some women but it wasn't the right choice for me.

So, I was told that I had cancer by my family doctor (which really isn't fair considering that when I asked a question she couldn't provide an answer [to no fault of her own]). Five days later, I saw my oncology surgeon and she explained the difference between a lumpectomy and a mastectomy but I left that appointment still not understanding anything about reconstruction although she did say that she would set up an appointment with a plastic surgeon to discuss reconstruction. A week later (so twelve days after I found out that I had cancer), I met with my plastic surgeon and I had five days (before my mastectomy surgery) to decide what I wanted to do. In reality, 13 days before I met with a plastic surgeon to decided what kind of breasts I wanted for the rest of my life, I didn't even know I had cancer and now I only had five days to decide - it was an absurd process.

To be honest, the surgeon told me his recommendation and I took it. I regret not doing more research mind you I didn't really have the time and having no concept of how quickly cancer grows or spreads, the thought of getting the cancer out of me was my focus, no matter how mutilated or deformed I looked. I was also told that a nipple sparing procedure was not possible because research showed (insert stat here...) but in reality, there are surgeons who do perform nipple sparing procedures, I just didn't have one of those surgeons. Do I ever miss my nipple.

So, the day of the surgery, I had my right breast removed and at the same time, I had an expander inserted (I refer to it as one stop shopping). Apparently, having a mastectomy and an expander put in during the same surgery is not common practice so I consider myself lucky that I didn't need a separate surgery for the expander. Because my breasts were far from perky, my plastic surgeon suggested that I get a reduction on my left side to try to even them out. It seemed like a good idea at the time.

I woke up from surgery totally bandaged up and for about a week, I could not see anything underneath my bandages (which I was totally fine with). Once the bandages came off those, I can safely say that I was not prepared for what was underneath. My left side was so incredibly small (I had size 'e' breasts before and I asked for 'd' but woke up to a small 'c') and I had no idea that I would never get the sensation back in my reduced side either. If I had known any of this information, I would have seriously reconsidered my decisions.

My right side was flat and as I have written about many times, I struggled being able to accept that my breast was gone. Instead of accepting it, for weeks Keith got me dressed and cleaned my wounds (while I kept my eyes closed). I was petrified of my first expansion but soon learned that because I had lost so much sensation, I could barely feel anything (although I did still take sedatives and used an Emla patch). I had a total of seven expansions and because of my fear of needles, I asked that he double up (so rather than having the usual 50cc-60cc per injection, I was getting 100cc-120cc per injection to limit the number of needles that I needed). It caused a lot of pain doing it this way but the anxiety that my needle phobia puts me through is so crippling that it was worth it.

As I got more and more expansions, I assumed that the expander would start looking like a breast but instead it continued to look like an eggplant (thank you AnneMarie) was growing under my skin. And of course with no nipple, it looked like there was a lump in the place where my breast used to be, but in no way was this a breast.

As time moved on, the expander seemed to 'deflate' but what I think actually happened was that it slipped out of place and was now somewhat 'pooling' at the bottom of my 'breast' (and I use that word strictly for location not for description). While going to different doctor's appointments, I had four different doctors tell me that I should make an appointment with my plastic surgeon because my expander didn't look 'normal'. So, I made an appointment with him and he said, word for word, 'It should be ok.' I don't know about you, but that's not an appropriate response for me. If I've had to experience the bull shit that is breast cancer, I better end up with the best damn real looking boobs that are humanly possible and not something that 'should be ok.'

At the time of making decisions about what my breasts were going to look like, I was told that they wouldn't be symmetrical because one was a natural breast and one was a 'fake' breast but again at the time, I didn't care - just get this cancer out of me. Because doctors don't like touching healthy breast tissue and therefore the idea of getting two implants was shot down, I was prepared for my unsymmetrical set however, I expected them to look like boobs and not like vegetables. But now, now I care. Now that the cancer has been cut out of me, there has got to be something better than what I'm left with. I can't go from having 'e' breasts my entire life to then have a small 'c' and an eggplant. I am not ok with this. And because I've waited this long for my implant, what's another few months - I've decided to get a second opinion.

I know as much about reconstruction as I do about the Buckingham Palace, or building a house, or raising chickens, (that would be nothing at all) so why not talk to another expert who can maybe shed some light on breast reconstruction and give me some guidance. I am currently, I am on a waiting list for a surgeon who I have only heard amazing things about and I am hoping that she will be able to give me my breasts back, even though I am aware that nothing will ever replace my original pair, there has got to be something better than this.

Talkin' Breast Cancer with an Old Lady

Because of my age, I have been given many opportunities to speak about my experience as a 26 year old cancer patient and the most recent experience allowed me to spread my own awareness to young girls. I was asked to speak to a group of Girl Guides between the ages of 15 and 18 and it was quite honestly an amazing experience.

October is a busy month for breast cancer organizations and many times survivors because it's Breast Cancer Awareness Month. It means different things to different people. The blogging world is lit up with 'pink washing' and you hear a lot about the pink ribbon, consumerism, and how corporations take advantage of this month. I have been told by a number of people that 'the public is aware, now we need a cure' or 'why do we focus on awareness when prevention is what we need?' Although I agree that we need a cure, that we should focus on prevention, and that we should use the pink ribbon for good, I don't think we are all aware. Well, and maybe my awareness means something different than other's awareness.

Before I had breast cancer, I had seen the pink ribbon, knew that it represented breast cancer and knew that if someone was wearing it that they were touched by breast cancer in some way. Does that make me aware? I don't think so. I had zero awareness of what breast cancer is or more importantly that it could happen to me. I didn't know about the emotional effects, about the process, about the pain, about survivorship, the required support, where my donations went - I knew none of it.

I get a little frustrated during breast cancer awareness because I, among other young breast cancer patients/survivors are forgotten about again. The ads target grandmothers, women with grown children, women in menopause and they miss us youngins. It is true that 80% of all breast cancer diagnoses are in the 50+ age group so I understand why so much of this month is devoted to our aunts, mothers and grandmothers but if anything, that group is more aware of breast cancer than anyone. Aren't women in their 20s, 30s and 40s a missed demographic? Shouldn't we (daughters, nieces, sisters, and granddaughter) be the ones that are targeted by awareness?

When I was asked to speak to the Girl Guides, I was pretty excited about it. During the weeks leading up to the engagement, I kept thinking, 'these girls must be really looking forward to this night (<---- pure sarcasm). How excited would I be at 15 years old to hear an old lady talk about breast cancer? Cancer is the most depressing topic ever and on top of it, we have to discuss our breast?' I tried to keep these thoughts in mind while I was preparing what I was going to say to them. I wanted them to feel comfortable with me and ask any question that they could think of. In my own experience, primarily with my Aunt Sandra who died of pancreatic cancer when I was 15, I didn't ask any of my own questions because I didn't want to upset anyone. I didn't know what cancer was, I didn't understand how having cancer made someone so sick and could kill them, I didn't know how she got it, I knew very little but didn't want to bring it up so instead I said nothing. Because I was someone who had no personal connection to these girls, I wanted them to know that they could ask any question without me getting emotional, being sad, or saying that I would explain it to them when they were older and I wanted them to be aware that breast cancer doesn't only happen to 'old ladies' (although I'm sure that at 28, I am still 'old' in their minds).

I told them stories about cancer, chemo, things people say, supportive things that people had done for me, how cancer doesn't end when treatment does - primarily my story. I handed out pamphlets that explained how to examine your breasts and told them at their age, it was important to know what was normal so if anything abnormal showed up, they would be able to identify it, tell someone, and catch it early. I didn't want to scare them and I think I was able to balance awareness and education.

I had them laughing, tried to spare them the stories of my PICC lines, the constant nausea that comes with chemo, and the grossness of my post-surgery drain. Instead I tried to explain how I dealt with the loss of a breast, how people helped me when I was in need, and most importantly how I was so relieved in the end that I told someone when I found a lump even though I was so scared to find out what it was.

Every so often I would stop talking and ask if anyone had any questions and there was the odd one here and there but as time progressed, more hands went up and more girls were asking more questions. "How long did it take your hair to grow back", "You mentioned your periods went away, why?", "Can you have kids now", "Why was it hard to look down at your chest after surgery?" All I kept thinking was, "We've started a dialogue!" Together, we are talking about breast cancer and these girls feel safe. I don't know if I said the words 'period' and 'breast' in front of my peers when I was 15 but these girls are not only saying the words, but they are also asking questions. I loved it.

They thanked me at the end with a box of Girl Guide cookies (which are all gone - oops) and all I kept thinking was 'What I did was easy, what you girls did was the hard part.' I speak and write about cancer all the time, it's those girls that deserve a thank you. The fact that they welcomed me into their group, invited me to speak about breast cancer and then were interested enough to ask questions - it was amazing and it was awareness.

There are conflicting ideas about the right age to start breast cancer screening and whether the pink ribbon is a good representation of breast cancer anymore. No one can agree if we should focus more on prevention or on the cure. Some want more funds devoted to research while others want more support for survivorship programs. To be honest, I don't know what the right answer is but what's clear to me and what I've learned is that it's never too early to talk to young women (in high school, in college, pre-med, etc.) about breast cancer.

Thank you to the Girl Guides for letting me share my story and for having a conversation with an old lady.

Lost in Translation

I have had many conversations with other cancer survivors about the insensitive things that people say when you have cancer. There are some classics like 'it's only hair' (to which I started responding 'Oh great, so you're going to shave your head with me') to 'Well, just stay positive' (like it's as easy as breathing or blinking).

As time moved on and more and more people said the same things, I started realizing that no one was trying to be hurtful or insensitive, they just didn't know what to say. Another common thing was 'How are you feeling?' and I usually responded with 'fine' for a few reasons. First of all, most people don't want to hear about my diarrhea, my vomit, and the number of drugs that I'm on, most of which seem to be counteracting the side effects of the others. The other reason was that I found that sometimes people would almost try to compete with me. For example, when I said 'I am really tired' I was met with 'Uh, I know what you mean, my son is sick and I stayed up all night last night'????? Nope, you don't know what I mean. The anxiety of the disease, the chemicals of chemo, the restlessness that some of the drugs cause and the fatigue of being sick all mixed together keeps you in this zombie-like state where it's almost impossible to sleep regardless of if it's the only thing that you want to do.

I think one of my favourite examples, because it happened so much, was the number of times someone said 'You have breast cancer? My aunt had breast cancer and she died three years ago.' What in the hell am I supposed to do with that?' I wanted to say 'Well, I hope I don't die.' But, as time went on, I started to realize that people were trying to relate to me. They weren't really saying 'Gee, you might die', they were more likely saying 'I had an aunt who suffered through breast cancer and because of her pain I have an idea of what you're experiencing.' It definitely took a while to understand this but after almost pulling my hair out (wait, I guess I can't use this expressing in this instance...) from the things people said, I needed to cling to some explanation. I also tried to think of my life before cancer (maybe it's just me, but I feel like I didn't have a life without cancer, anyway) and I'm sure I said things like this because I had no concept of the psychological side of cancer.

Another favourite is 'God works in mysterious ways', I wanted to say 'That's easy for you to say, you've never had cancer.' I think people wanted to find a reason for my cancer so they would feel better about it themselves. If they are able to blame stress, or the environment, or food, or deodorant, or the microwave, or genetics, or plastic, or the birth control pill, or God, they can decide that my cancer was caused by one of these many factors and can try to avoid it. When I tell them that no oncologist can tell me why I got cancer, they get scared and realize that it can happen to them.

I think one of my favourite (and I use that word loosely) things someone said to me was all in the span of a red light. I was driving and my mom was in the passenger seat. We pulled up to someone that we knew and rolled down the window. The driver asked how I was doing and I told her that I was just about the start my fourth chemo the following week and that I was a little nervous about it. In my case, my chemo cocktail changed half way through (at my 4th treatment) and I had heard of people being allergic to this cocktail causing severe vomiting, etc. So anyway, the driver of the other car says 'Oh my friend Lois almost died from her fourth chemo.' My mouth dropped, the light turned green, and we both drove away. ALMOST DIED? Who says that??

The rest of the drive home, I was freaking out, 'almost died, almost DIED'. My mom tried to calm me down by coming up with excuses for the driver but she knew that what was said was so insensitive and just stupid. Again, I tried to find a reason that someone would say that and I know, deep down, that she was trying to relate. What she meant was 'I know you must be scared because Lois really struggled with her fourth treatment.'

Even now, I seem to get a lot of 'Ugh, you must be glad that's over.' And I know that people don't understand that cancer doesn't end when treatment does but it's still hard for me to have a conversation when that is the starting point. I try to calmly explain that I am still experiencing cancer even if it is out of my body. I know what they mean is 'I bet you're glad that your hair has grown back, aren't in chemo any more, and aren't experiencing the same physical side effects that you were a year ago' but it's still a struggle to hear someone say that to me.

My mom has compared it to being pregnant. She said that when her ankles were really swollen, people would come up to her and tell her horror stories about a friend of theirs who almost lost her baby when her ankles looked like that. Why do we do this to each other? As I said, I think we choose relations over mindfulness and rather than thinking of the consequences of our words, we try to let the other person know that we have a slight understanding of what they are going through. If I can give any advice, try to translate what people are saying to you into what they could possibly mean, I know it kept me sane as I went through treatment.

A Modern Day Love Story

When I was a kid, I thought about my Prince Charming, the perfect man, who always knew what to say, took care of my every need, and no matter how fat I was, never said that I looked fat in anything. When I was a kid, things were easy, I would finish school, go to university, be rich by twenty five years old, have two kids and be married by the time I was thirty. When I was a kid, I had it planned, and the possibility of not achieving any of this never crossed my mind.

 

When I was in high school, I never really had a boyfriend. I like to pretend that it was because they were all too immature but I think it’s safe to say that the size of my hips scared most of them away. At the ripe old age of 18, I wasn’t sure if love was ever going to happen for me.

 

I considered myself someone who hadn't faced much adversity in my life. I mean, I have always struggled with my weight and I had arthritis by the time I was sixteen but everyone has something, right? When my aunt died of pancreatic cancer, I started looking at life a little differently. Why her? Why so young? Why cancer?

 

Fast forward about six years and after I had come to terms with my aunt's death, as I ploughed through university my childhood dreams slipped away. After 20 years of marriage, my parents split up shattering much of what I believed in, instead of being rich, I was borrowing more and more money from the government to sustain my six years at university, kids were nowhere in sight and I had just broken up with who I had considered to be my soul mate. Boy, did I miss being six years old and seeing the world with rose coloured glasses. 

 

So as I entered my fourth year of university, I was determined to get through the year and graduate. In the mean time, I got to know Keith. I mean I had known him for five years at this point but I knew him as my brothers’ friend. We started hanging out and once he started making the four hour drive to Ottawa to see me on weekends, I knew we were becoming more than friends. Near the end of my first semester of my last year, we made it official.

 

One year turned into two and between going back to university for two more degrees and working at a pretty steady pace, Keith packed up all of his life and moved it to Ottawa to be with me. After a few more years, it started to become apparent that Prince Charming doesn’t exist. Hahaha, just kidding Babe! But seriously, what I started to realize is that Keith and I work very hard (as a team) to make our relationship work. There is no secret, and we aren't perfect but damn we make a good pair.

 

I graduated in 2009 and Keith and I took a six week trip to Europe. When we came back, I got a decent job, as did Keith and things were starting to fall into place. After the split of my parents, I didn't know if I was prepared to get married but Keith and I were discussing starting a family, certainly not right away, but within a couple of years. Then right in the middle of careers and baby came cancer. 

 

The morning of my diagnosis, my mom came with me to the appointment and although we were convinced that it was nothing, I didn't want to go alone in case it was something. I called Keith at work and said 'I have cancer.' There are no words for the feeling that I had at that moment. What I wanted to say was 'I have cancer but I promise I'll do my best not to die, okay?' and although I wanted to be strong for him (knowing how scared he must have been to hear me say those words) I needed him to be strong for me.

 

As time moved on, we were able to joke about cancer. I still insist that everyone should have a 20% off everything card while in treatment (including big purchases like cars, houses, and student loans). A week after my diagnosis, I came home to a gift on the kitchen table. I opened it to find a journal inside and a card that said 'for everything you can't tell me.' 

 

As one appointment turned into twenty, Keith was by my side for everything and as my needle phobia only worsened, his protective hugs and his tear wiping abilities only got stronger. He walked me to the washroom when I could barely walk myself there after surgery, he emptied my drain because I couldn't do it myself, he would shower with me just so I wouldn't have to accept my mastectomy by touching it and to be honest, he even dressed me for a couple of weeks.

 

After surgery was chemo and although I was bald with only one breast and packing on the steroid pounds, I never questioned his love for me once. After chemo #3, I hadn't left the house in six days. After responding 'no' to the daily 'are we going to leave the house today' question, on day six he told me that it was time to leave the house. I told him that I wasn't feeling well and he said 'Sweetie, you have to try.' It took about a half an hour to get dressed (between the nausea and the fatigue) but I did it. I walked to the end of the hallway, took the elevator downstairs and went outside. I made it about nine steps into the parking lot and said 'I'm going to throw up' and he quickly said 'Ok, let's turn around.' I got back into bed and Keith said 'I'm proud of you for trying.' The next day I walked for about fifteen minutes and the next even longer. Without Keith, I would still be in bed.

 

I have heard of too many women who deal with breast cancer alone or whose partners throw themselves into work or turn to alcohol to cope. Keith heard the diagnosis and instantly treated my cancer as our cancer. I never had a choice in having cancer, I knew what my fate was, but he did. Keith could have left, he had the choice and he chose to stay.

 

Chemo ended but the fatigue didn't. I spent a lot of time sleeping for the months after chemo and again, some days I didn't leave the house.  Keith never made me feel guilty or pressured me to 'get more done' or to go back to work. A week after chemo ended, I posted a blog called 'My New Normal' and this is the one and only comment that Keith has ever written on my blog;

 

Katie,

I have tried to tell you all the positive “comments” in person about your blog. I didn’t want to have it become about us, as much as it should be about you. You deserve your own place to write about all the feelings you have, (which are a lot) and as we all know, you react well to a reward system.

You are an amazing woman. It’s no suprise you have so much support and love surrounding you, seeing as that you can brighten anyone’s day just by being yourself. You have taken over not only my friends, but my family with your charm. I can’t tell you how many times I will tell friends or family, “yes, I will be there” and the first words out of their mouths are “is Katie coming?”. I used to be popular, but now I’m just the guy who brings Katie.

I sincerely believe you have found your true calling through this awful experience, and will take the education and passion you have for teaching and use it to change peoples’ lives. You have the gift of being able to express an idea to someone in a way they can comprehend, without coming across as superior or pretentious. Your amazing sense of humour and quick wit can pull people out of their shell and help them open up to you and your ideas.

There are great things in store for you my sweet, and this is only the beginning.

Love Keith

 

I'm not trying to pretend that at 28 years old or after six years of a relationship that we've got it figured out. I somewhat think that the idea of a 'soulmate' takes away from a relationship. It gives us the idea that once you find that one person in the world that you are destined to be with, everything will work itself out, that there is no work involved and that you don't have to try, and until you find that person, it is you that is doing something wrong by looking in the wrong places. I don't believe in soul mates, I believe in working hard, giving and taking, being on the same team, and communication.

 

In May, we were at a cancer retreat and at the end of the weekend, one of the cancer survivors came over to Keith and I and said 'Do you guys always laugh this much?' and together we said 'Yes.' We just get each other. Keith still makes me laugh harder than anyone else and what I'm most proud of is that I can make him laugh just as hard. I can safely say that I still have a crush on my boyfriend after six years.

 

To Keith,

I'm proud to be yours and to call you mine

Thank you for caring enough to stay.

Singing in the Rain

On Sunday afternoon, I seemed to have a lot of energy which I must say is rather unusual lately. I have been told, by both survivors and doctors that at the two year mark (post-treatment), the fatigue will be noticeably different. I guess I just have to power through the next year then. Anyway, on Sunday morning I had just downloaded some of the latest girl music mostly from Rihanna, Pink, and Nicki Minaj and as I was sitting at my desk, searching Twitter, Facebook and Google for the latest breast cancer ‘stuff’, dancing in my chair, I thought ‘I should go for a walk’. As I said, with my lack of energy, this kind of thought doesn’t go through my head very often.

I looked outside and it was raining. I went to The Weather Network website to see what the weather was supposed to be like for the rest of the day, and the forecast said rain. And although popular belief is that I’m made of sugar (just kidding), I decided to brave the rain, because as Keith says when he eats things like a cinnamon bun for breakfast, ‘I’m an adult and I can make these kind of decisions.’ What's the worst that's going to happen, I'm going to get wet? I threw a sweater on, grabbed my running shoes, turned on my MP3 player (I’m not fancy enough to have an ‘i’ anything – just an old fashion MP3 player) and before I was out the door, I was already dancing.

It felt so good to walk, and although not every day is an active one, I am really trying to get in thirty minutes of walking a day. I chose not to bring an umbrella mostly because I didn’t want to carry it and lets be honest, my hands needed to be free for my dance moves. Yes, I got some looks and I was wet (like really wet) by the time I got home but I felt good. I was singing in the rain, dancing in the rain, and mostly, I was kicking ass in the rain.

 

It’s so easy to feel sorry for myself. It’s so easy to focus on cancer. It’s so easy to feel like a victim. And some days, I do feel all of these things but I really try to look at the positive side. Nothing can change the fact that I had cancer, nothing can change the fact that it took my breast and that I will never have my nipple back but I am trying my best to make sure that that's all cancer takes from me.

I’m not trying to make it sound like I sleep with a smile on my face or like cancer isn’t a profound part of my every day routine because it certainly is but whether I worry about the future or dwell on the past, I won’t be able to grow a breast back and the scars on my chest and in my heart will always be there so for now, I am trying to do what makes me happy.

I had someone (who I only met a few months ago) say to me the other day ‘I had no idea that you had cancer. You’re just so happy all of the time.’ She wasn't trying to imply that if you've had cancer, you need to be miserable - her point was that if SHE had cancer, she would be miserable. She’s right in some respect, I do have a lot to be upset about but I keep coming back to; what good is that going to do? Some days are easier than others but through the tears are always smiles because to be quite honest, it's cost me less energy to laugh than to cry and if anything, I am doing my best to conserve my energy.

 

I think it was this walk that felt so good because I realized how empowered I was as a survivor. A year ago, I was stuck inside in a chemo haze, feeling like garbage, dreaming about going for a walk - this year I'm walking! I don’t want to let cancer have a hold on the rest of my life the way that it once did. Not being a patient anymore and having transitioned to a survivor comes with some empowerment and as I think about the days during treatment when walking to the washroom was a challenge, I refuse to let the memory of treatment affect my present. I am so grateful to have my health back and I feel like I should be celebrating it by not taking it for granted.

#Delhi2013 is My Fresh Chapter

For those of you who don't know, I want to go on a trip to India with 12 other cancer survivors. Terri Wingham, a trailblazer in the cancer (survivorship) world, it taking 12 survivors to India for two weeks in February to volunteer, give back and find a little bit out about themselves.

Terri has asked that all applicants write a blog entry with a max of 500 words about why they are ready for A Fresh Chapter (which is the name of Terri's blog and foundation).

Here's my entry...

After being told for seven months that 'it was nothing', on March 11th, 2011, I was diagnosed with stage II breast cancer at the age of 26. With no family history of the disease and being otherwise healthy, being blindsided is the only way I know how to describe my diagnosis.

I had a mastectomy 17 days after hearing the news and then went through six aggressive chemo treatments. As I approached the end of treatment, I kept thinking 'It's almost over' but I soon realized that even though treatment was coming to an end, cancer is never over.

I went through a transition or 'cancer limbo' as I like to call it where I couldn't identify as a patient any more but I certainly didn't feel like a survivor. As a part of this transition, I also had to get used to my new (post-treatment) normal.

When I finished treatment, I felt like everyone around me took a huge sigh of relief, and I took a huge sigh of 'what now?' I somewhat feel that it was the end of treatment where my journey really began. I am trying to find a place for myself in this world now. I am trying to balance my cancer life and my career, my personal life, and my relationships.

I don't think I necessarily understood how much of a void cancer left in my life until I read Terri's blog about taking a group of 12 survivors to India. I was in tears after reading about the trip and I knew I had to be one of those 12 survivors. #Delhi2013 gives me a sense of purpose, a way to give back (or pay forward what so many people did for me), a way to help others when I know so much about needing help.

Cancer can be (and was) so isolating and to be able to volunteer in a country like India gives me hope; hope for learning about others, hope for learning about myself and hope for my future as a healed (not to be confused with 'cured') breast cancer survivor.

I think this trip would provide a lot of emotional healing that I may not be able to find in another capacity. Having been out of treatment for a year now, I think I am ready to grow as an individual and truly learn what it means to start a fresh chapter.

'Sometimes you need to be on the other side to find your way back to yourself.'

Hope Floats

As a breast cancer patient and now survivor, I was inundated with a variety of words, symbols and phrases. 'Stay positive' and 'It's only hair' were very common phrases and the pink ribbon symbol was just about every where (including places like the shrink wrap packaging on mushrooms, K-cups for Keurig coffee machines, and umbrellas -to name a few). A word that kept coming up was the word 'hope'. I've seen this word written in every colour but most popularly pink, tattooed, and with letters substituted with the pink ribbon. I have said in previous posts that the words 'cancer' and 'mastectomy' were only words before my diagnosis and now they carry meaning and substance and somehow, I seem to feel a little bit of the opposite towards the word 'hope'.

Before my diagnosis, having had family members experience it, I considered myself well versed in cancer (I mean in comparison to what I know now, I knew NOTHING) and a mastectomy was a surgery that women get when they have breast cancer, I had no emotion attached to the word, it was just a procedure - those were simpler times. I knew what I needed to know about those two words. Hope on the other hand, I was a pro at hope, I could explain it, give examples from my life, I had experienced hope and wished hope onto others. Hope was easy. Well, hope was easy until I had cancer then hope went away. I couldn't rely on hope because I had cancer. I had to rely on doctors, on chemo, or family and on myself. Hope took a back seat and to be honest, I thought she jumped out of the car somewhere between My New Normal and Cancer Limbo.

Hope used to be (pre-diagnosis) positive, achievable, gave me strength and provided some sense of motivation. Now, I feel like it's breast cancer's word, it is used on shopping bags, on t-shirts, and bandannas and has become such a part of pink ribbon consumerism that I think it has lost its luster. To me, hope isn't what got me through breast cancer; positivity, strength, motivation, courage, vulnerability, they got me through breast cancer. To be honest, I don't feel like I have felt 'hope' since my diagnosis, not in a negative way, it's just not something that I have been able to capture or feel. This may sound really childish, but hope is magical to me, it's something you have to believe in and it's not always easy to see.

I have gotten used to saying things like 'I hope it doesn't rain tomorrow' or 'I hope my car doesn't blow up on the way to work tonight'. I feel like I started to use 'hope' in cases where I had no control of the outcome and although cancer can be a helpless situation, I just never hoped that I would survive breast cancer because whether cancer liked it or not, I was taking control of the outcome.

After living in a 'hope-less' world since my diagnosis, the other day, with only two little words, I was given hope.

I am on a committee for young women with breast cancer. We meet once a month and connect in a way that others wouldn't understand. We all miss our nipple(s), short hair is a prerequisite, and if you have two natural breasts, you're not welcome. We get it because we've been there. Anyway, each time we meet, we have an organized activity or speaker and then get to socialize afterwards. It's such a fantastic group to be a part of.

So on Sunday night, I was setting up the sign-in table and one of the other committee members (who had gone through eight chemo treatments in 2009) made some comment about her shirt not fitting properly [insert hope here] because, she said, "I'm pregnant." First Try! No Fertility Help! Good Old Fashion Sex=Pregnant! I had goosebumps (and do again as I write the word 'goosebumps'). I wanted to say 'What about the struggles? What about the 40% chance? What about the... and the ....?' In my heart, I felt hope.

I struggle with 'faith' (not religion but faith) and unfortunately I sometimes cling to stats and what can be proven. I'm one for achieving in the 90th percentile of everything (math tests, English assignments, height) and a 40% chance of me being able to have a baby isn't exactly what I call 'cohesive with my plans'. When I see a baby bump in front of me, on a girl who was supposed to struggle, who was supposed to have to seek help and only get pregnant by a miracle, it gives me hope. According to a 2011 study, I had a 1 in 383142 chance of getting breast cancer at my age and I did so a 2 in 5 chance of having a baby should be a breeze. Those two little words 'I'm pregnant' put everything into perspective again.

I am Strong! I am Invincible! I am Woman??

For the last week, I keep thinking about what it means to be a woman. Is a woman defined by what she does? How she acts? Her appearance? Her anatomy? And well, I think it's easy to say it's a mixture of all of this. I have always had strong examples of women in my life who have taught me a thing or two about the definition of a woman.

I think different occasions in our lives change the way we define ourselves and change the way we define each other. I know when it comes to being a woman, occasions like losing your virginity, getting married, having a child, etc. can change what we think it means to be a woman. I can't help but thinking about Erin Brockovich (the movie not the woman) when I think about being a woman. There is a character in that film who has had different forms of women's cancers and she says something like 'Erin, do you think that with no uterus, and no ovaries, and one breast, I am still considered a woman?'. And for some reason, I can't get that line out of my head. I guess I feel similarly about myself; with only one breast (one that was reduced and doesn't even feel like my own) and the potential of not being able to reproduce, am I still considered a woman?

Part of me (the kick-ass, I can take on anything, nothing will get me down, part) thinks, 'I'm not going to let cancer take this from me. Cancer may have taken my breast but it can't take my womanhood. I am a woman for many other reasons than my breast(s).' And then the other part of me (the insecure, put-it-all-out-there, vulnerable, part of me) says, you are not the (amount of) woman you used to be. I feel like my boobs helped define me, and I don't want that to be confused with anything other than I was proud to have large breasts, the same way I was to have curves; they made me feel womanly. Anymore, I feel like I am fighting with myself to say 'I am still a woman.' Do you know that song by Pink called 'Don't Let Me Get Me'? Well it goes 'Don't let me get me, I'm my own worst enemy. It's bad when you annoy yourself, so irritating, don't want to be my friend no more, I want to be somebody else' - that describes it pretty well.

Last week, while thinking about what it meant to be a woman, I read a blog post about Kathy Bates' decision to have a double mastectomy and in one of the comments, a woman (who has never had breast cancer or any cancer) wrote something like 'I don't find that my breasts are part of my sexual identity or femininity and because I have used them for their true purpose of breastfeeding, I wouldn't think twice about chopping them off.' I think in that one comment, she managed to discredit so much of what I feel, so many of my insecurities, and it makes me feel shallow about missing my breasts. Mind you, it is safe to say that I will never be able to breastfeed (I'm missing one, and the other one was reduced which means it's a no-go either). My pre-cancer breasts were already pointing south but I would give just about anything to have them back, they weren't perky or firm but they were mine and they made me feel like more of a woman than I will ever feel like again.

I just don't seem to have that innate 'feminine' feeling anymore. It's a rare occasion that I want to dress up, or go out, or get dolled up, I think because primarily I would feel like I was trying to fool everyone (including myself). I know what my chest looks like and I know that I am not who I used to be (I'm sure many of you are thinking 'Yes, but you need to mourn the old you and embrace the new you' and trust me, I KNOW). And like so many survivors said, it has gotten better and I am getting used to it but I guess it's just sad to think that this is what I have to get used to. Sometimes, I feel like I want to throw a tantrum yelling 'I want my old breast back' (mind you, I'm not sure what that would accomplish or who would be able to appease me considering there is nothing that can be done.)

I remember seeing a movie with Diane Keaton, and Rachel McAdams and the guy who played 'Coach' on the show 'Coach.' Anyway, it's a Christmas movie (totally irrelevant to the story) and at one point Diane Keaton (a breast cancer survivor in the film) takes 'Coach's' hand (her husband in the film) and puts it on her mastectomied breast and although I watched this film pre-diagnosis, I had a hard time not looking away from the screen. I remember thinking, 'how awful would that be?' How could she ever feel sexy? Those scars represent so much more than surgery! And now, the difference is, I can't put my hands over my eyes until the scene is over. I'm the one in the movie and those thoughts and fears are now directed at myself.

Listen, I give myself a pep talk every day and I know there is more to being a woman than breasts, I just miss my old one. I know it's what's on the inside that counts but I miss putting on that shirt and feeling good about the way I looked. I miss filling out clothes and buying a NORMAL bra not a mastectomy bra. I miss feeling sexy and mostly, I miss feeling like a woman.

Potpourri

There are many 'things' that go through my mind in a day that I couldn't write an entire blog post about, well to be honest, I couldn't write more than a couple sentences about but that I wanted to share. So this is a mixed bag post, with a variety of different thoughts and perspectives. I have also been told some interesting things by people who just don't think since I have had cancer. I have documented some of them in previous posts but I've included some more. I have also included some tips that I have found really helpful so far.

The other day, I was walking to work in the rain without an umbrella and thought 'Am I going to have to ring out my prosthesis when I get there?' (mine is cotton and is taking the place of the implant that I will be getting in a few months). I'm being quite serious too, I honestly wondered if I was going to have to ring out my boob.

What was said: “I used to feel sorry for you that you had cancer, now I feel sorry for your that you’re a Leafs fan”
My response: “Cancer has nothing on the pain that the Leafs cause.”
My thought: I don’t need you to feel sorry for me for anything, especially having cancer. Your pity isn’t welcomed here!

Tip: I have been struggling with these hot flashes that so nicely accompany Tamoxifen and so for my birthday, I asked for a gel filled pillow that stays cool. Keith got it for me and it really seems to be improving my sleep. They aren't cheap (mine was $55 at Costco) but they are supposed to last a long time and can you really put a price on sleep?

What was said: “Ok, well keep me abreast” My response: <Angry Look>
My thought: After finding out that he was genuine in his comment and hadn’t intended on saying anything about breasts he just meant ‘keep me informed’, he hadn’t even noticed that he used the word ‘aBREAST’.

I can't believe what I'm about to write is true, but sometimes I wish that I was back in chemo. I felt safe there and I knew that cancer couldn't survive the treatment. I almost feel like if they found another cancerous lump, I would feel relief, relief that they caught it and relief that I would be monitored again. I find it nerve racking to leave my body to its own devices anymore.

I have found that humour unites people and it makes everyone feel comfortable. It's not for everyone but for me it has allowed for many discussions that wouldn't have otherwise happened. I find that people my age are so disconnected from cancer and assume it's something we get when we're older and I try to use my humour to make them feel comfortable with the idea of talking about it which in the end brings awareness to it.

What was said: “…Oh yeah, he was asking about you and I told him that you were on holidays until April.”
My response: “Oh that’s nice.”
My thought: “HOLIDAYS???????”

I have found that Twitter is SHOCKINGLY supportive. For anyone who is going through (breast) cancer, whether you're a patient or survivor, you need to get onto Twitter. I am still learning but it is amazing. I have read so many articles and connected with so many people that I would otherwise not have found.

What was said: “I’d give anything for your hair.”
My response: “Oh thanks, I can’t say that I love this style. I feel like I should have Daddy Warbucks right beside me.”
My thought: “How about giving your right breast, that’s all it took for me to get this style.”

I have been very blessed my entire life and especially since I have been diagnosed with cancer. I have had many opportunities that I would have otherwise never had but sometimes I miss my boring, NAIVE life that I used to live (with two breasts that were my own). Sometimes, just looking at pictures of myself pre-cancer makes me tear up.

What was said: After finding out that I was off for a year, 3 different people assumed that I was on mat-leave.
My response: “Well, I wasn’t on mat-leave, I had cancer”
My thought: It was just that much harder because I may never experience mat-leave.

Tip: Sometimes, wearing lingerie helps make you feel good and dare I say 'sexy'. Although, I never feel good enough to bare my chest, a nice bra or teddy sure beats a t-shirt.

When I was in treatment, and cancer survivorsreached out to me, I was so jealous of where they were because it was 'over' for them. I had absolutely no concept of the struggles that come along with survivorship. I just didn't understand the difference between surviving cancer and finishing it (I thought they were one in the same). Oh how I sing a different tune now. I guess that's why we aren't called 'Cancer Completers' or 'Cancer Finishers' - I kid.

What was said: 'Well, at least you get a free boob job out of it.'
My response: 'Yeah...'
My thought: Are you f*cking kidding me? A mastectomy with an implant shoved underneath where my breast used to be isn't exactly a breast augmentation.

Sometimes I wonder if my plastic surgeon looked at me and thought 'She's overweight and already had a mastectomy - I'm sure she'll be happy with whatever I give her' because this lump on my chest is the farthest thing from a breast that I've ever seen.

What was said: After telling someone that an oncology surgeon told me that I did not have cancer - 'You didn't think to get a second opinion?'
My response: 'No.'
My thought: Are you kidding me? I was 26, with no family history and no one was concerned. No, I trusted my doctor. I'm sorry, is that your way of saying that you think it's my fault for getting cancer? When someone tells you that you don't have a disease (a disease that you have less than 1% chance of getting and that you carry non of the symptoms), do YOU usually go and get a second opinion?

Tip: Although I don't always follow my own advice, I have found that the more active I am, the less tired I am. This cancer/treatment recovery/Tamoxifen fatigue is really kicking my ass but every time I start moving, I always feel better, sleep better, and am less tired in the end.

What was said: 'You can always adopt.'
My response: 'Did you have a choice in bearing your own children?'
My thought: Who says that? People say this in a way like they think they are providing me with an option that I had never considered. I think it's about the way they approach it. If someone said 'Have you and Keith discussed adoption?', that wouldn't offend me but because they make it sound so simple and cut and dry, it drives me crazy.

Writing is incredibly therapeutic and healing. I am NOT a writer and mostly feel like I am talking out of my ass sometimes but I can't believe how many things I have worked through by just writing. I encourage you to do the same. I feel like I am validating others' feelings and when others write comments, they totally validate me and that's what so much of this emotional cancer thing is about, feeling less isolated and validated.

What was said: After watching me put something in the microwave - 'Do you have to watch what you eat now that you've had cancer?'
My response: 'Well, everyone should watch what they eat.'
My thought: RAHHHHHHH! I just get so annoyed when I feel like people are criticizing me. This person SMOKES for God sakes, worry about your own shit!

Tip: When I finished treatment, I found like I wanted to give back, for a variety of reasons. I feel like so many people provided me with support that I wanted to pay it forward, and there are so many women who go through this alone and feel so isolated, that I wanted to help now that I was on the other side. I have found that volunteering with different organizations has proven to be so rewarding and has filled a bit of that void. If you are feeling that void, I suggest you look into volunteering.

I have found that you need to be gentle with yourself and when your body is telling you something, you need to listen. Sleep when you need to sleep (within reason - haha), move when you need to move and most importantly be patient with yourself - you just kicked or are currently kicking cancer's ass, that's no easy feat!

Surviving Survivorship

Living in the moment! Don’t worry about tomorrow, dream about it! Live in the now! Take risks! Be less predictable!

I try to remind myself of these little sayings every day. Am I always successful? Nope! But does it ever feel fantastic when I am.

I have always been one to plan; my meals, my wardrobe, my finances, my life. Obviously cancer doesn’t give a shit about your plans and so I have had to change. Eeeeeek! Change! I hate change. I like predictability, I like knowing what to expect, and I like organization, expectations and highlighters; highlighters are great.

So now that treatment is over and it’s just me and Tamoxifen hanging out for the next few years, what do I have to worry about, right? Wrong! I feel like when I finished treatment, every one around me took a huge sigh of relief but I felt like I was just starting my ‘journey’ (ok, seriously, I am really starting to hate that word. A journey sounds adventurous, exciting, PLANNED – cancer is not a journey). Anyway, now I’m kind of lost - at a 'what now?’ point in my life. How do I give back? How do I pay forward what others have done for me? How do I live a more fulfilling life? How do I apply what I have learned from cancer to my every day life? How do I ‘teach’ about cancer without preaching or complaining? How do I take the pressure off myself to be the ‘perfect’ cancer survivor and just learn to be (the new) me?

It’s almost like there’s a void in my life now, and I’m not talking about the void on my chest. I feel like something is missing (again, not talking about 'Righty'). In a weird way though, I think every thing is going the way it’s supposed to be going. I went to university for six years and got three degrees in education and yet I have always known that I don’t want to be a teacher. Weird, right? Why keep going back for different degrees and racking up an unspeakable student loan if you know that you don’t want to teach? Well, I just always knew that I wanted to be in education and make a difference, but just not in a classroom. Now that I have a bachelor's degree in cancer, I feel like I know how to use my education degrees. I was right to keep going back to school, and I was right that I didn't want to be in a classroom; I want to be a part of cancer education.

Ok, so that answers part of the 'what now' but what about the planning, the predictability, the need to live in the moment? Well, I am taking baby steps. Here's an example; before I had cancer, I had decided that I didn't want to get married, ever. I wanted to be with Keith for the rest of my life, but I didn't want to get married (for a variety of reasons that I don't necessarily want to get into here). Then I got sick, really sick, and my life was potentially going to be taken from me, and marriage all of a sudden became very important to me. I think I just assumed that Keith and I would both live until we were 100 and die together, the way the old couple from 'The Note Book' did. But then cancer happened and I realized that may not be the case. I decided that the day I die, whether that means at 28 years old, 50 years old, or 100 years old (like I had planned), I want to die as Keith's wife. Wow, this took a really morbid turn, really quickly.

There is a point, I promise.

So, ever since I finished treatment, I have wanted a ring, well, not just a ring, THE ring. And I mean it's not enough that the entire world is putting pressure on Keith, but now I am adding pressure, pressure that he hadn't felt before I was sick. But I have recently started to try to live in the moment and trying not to plan my life away (you know, that whole 'it's about the journey not the destination' thing). Here's the conclusion that I've come to; as soon as we get engaged, I will start planning the wedding, then we'll get married and somewhere in there buy a house, my student loans will slowly be paid off, if we're lucky, a few kids will show up along the way, I'll find my dream job and then what? When will I be happy? At what point will I look at my life and say 'I am enough'? At what point will I enjoy the life I live instead of the life I want to live?

So, I have (tried to) stopped pressuring Keith. I love our lives. I love him. Why am I wishing away this part of our lives together to just move to the next part? Is our love going to change when I have a ring on my finger? I hope not. Am I going to feel more fulfilled? I hope not. I hope I get happiness from within not externally. It may not seem like anything significant to anyone else, but to me, this is huge. Focus on making myself happy now, not in the future because you just never know...