#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...