Thursday, November 21, 2013

Challenge Accepted!

For as long as I can remember, I have always put a lot of pressure on myself to be the 'est': tallest, funniest, smartest, youngest, well, you see where I am going with this. By the time I was in grade 4, I was four feet, eleven inches - needless to say, tallest was not difficult through my formative years. In my double cohort graduating high school class, I was voted funniest female and I was not afraid to put that on my resume for the few years that followed (funniest? Check!). By the time I was 24 years old, I had earned three degrees - well, at least three pieces of paper say I'm smart(est). And by the time I was 26, I was diagnosed with breast cancer, something that not many other 26 year olds can achieve (Youngest? Also Check!).

While I spent the first 26 years of my life putting pressure on myself to achieve all the important 'ests', I was not prepared for the pressure that I was about to feel as a cancer survivor. I'm not sure how many times someone has asked me the reason that I was diagnosed with cancer; microwaves? deodorant? the birth control pill? too much meat? not enough meat? too much stress? did you swallow a bottle of cleaner as a kid? did every female ancestor in your family have breast cancer before you? the gene mutation? tap water? And with this barrage of questions comes a certain pressure that no one intentionally puts on me but it weighs heavily none the less. Along with these questions come a deeper questioning; 'Now that you've had cancer, you don't still use a microwave, do you?', 'You're not going to eat that chocolate bar, are you? You know what sugar can do to you, especially now that you've had cancer, don't you?', 'What? You don't eat organic EVERYTHING? You are a failure at being a cancer survivor!'.

I consume so much of my day with questions of 'What would a good cancer survivor do?'

We are faced with so many questions about what to eat, what not to eat, supplements to take, pills to avoid, and interactions to consider that it becomes so overwhelming and the result many times is a guilt induced binge-fest on everything that we know is bad for us. I gained a whopping 33 lbs with cancer and chemo. Wait, aren't you supposed to lose weight when you're going through chemo? Ya, that's what I thought too. But with breast cancer, it's different. When they start playing with your hormones, when you eat anything that you can keep down regardless of nutritional or caloric value and when you limit your physical activity because the thought of walking to the bathroom exhausts you, you pack on the weight. Oh, and because I am in a medically induced menopause, the cancer drugs that I'm on now help pack on the weight, too. Yes, if you're wondering, I AM living the 20-something dream!

Many times, when I would obsess over eating the right thing or avoiding the wrong thing, I would feel so overwhelmed and helpless that I would find myself wondering 'What's the point?' and I would eat myself into oblivion. Anytime I would start to research post-cancer foods or cancer survivor diets, I would find opposing viewpoints; coffee is bad because of the caffeine/coffee is good because of the antioxidants; bananas are good because of the potassium/bananas are bad because of the potassium. Avoid sugar. Avoid fat. Eat enough fat. Avoid carbs. Our body needs carbs. Become a vegan! You need meat... Holy crap, it is so overwhelming. Actually, just out of curiosity, I just googled 'too much broccoli' and articles actually popped up. Seriously?

When our life has just been flipped upside down, we have been hammered with toxic chemicals, we are beaten and battered, we are many pounds heavier than we were, and we have no energy with no promise of any in the near future, where do we go? Where do we start?

Back in January, I started to realize my addiction to pop (soda for my American friends). I loved pop, a lot. It was that 'thing' that I could never give up. Take away chocolate, and candy, and pizza but don't ever take away my pop. In all the research that I had been doing, with all the different food, and all the opposing viewpoints, I couldn't find one article that said that pop was a good thing or that its contents were beneficial in anyway. At that point, I decided to try to make it a week without a pop; a little 7-day challenge if you will. I didn't think I would last three days but one day turned into two which turned into four which turned into a week and ten months later, I haven't had a drop of pop. I mean, I still dream about it, and most mornings I wake up hoping that it was just a nightmare, but to this day, I haven't had any since I gave it up. This gave me a little momentum and I started trying this little challenge with other aspects of my life.

I started upping my veggie intake. I like vegetables, luckily, but I have never been a big vegetable eater (well post-mom's cooking). I decided to try to eat 4-6 servings a day - I challenged myself - and it worked and now I just naturally gravitate towards the vegetables, I even crave them. Don't get me wrong, I still like all the bad stuff but I make sure to get my vegetables in to me and then if there's room, I go for the bad stuff and to be honest, there isn't usually room. I also tried eating less processed foods. I am no pro at this but I definitely limit what I consume when it comes to prepackaged meals in a can/frozen/vacuumed-packed container.

Two weeks ago, I got on a juicing kick and decided to do a three day juicing detox. I know, right? Why would anyone not eat for three full days and only consume homemade juice that isn't the most delicious tasting liquid in the world? Well, I thought after going through chemotherapy and still currently being on cancer drugs that it was a good idea to detox, to give my digestive tract a break from the ups and downs of chemo and cancer (a long overdue break). Day 1 was so hard and if it hadn't been for Keith, I think I would have quit. Day 2 was just as hard but at least I knew that I could say 'tomorrow is the last day' and Day 3 was easiest although we did spend a lot of that evening planning the food we were going to eat the next day. Actually, we had planned to order pizza because we were both craving salt and couldn't imagine anything saltier. And then, when the time came, oddly enough, we both just wanted salad. I know that sounds like I am making it up, or that I am getting paid by a juicing company to say that, but honestly, we both just wanted nutrients. It was like our body had rebooted and once we could eat again, once we could have the salt, and the sugar and the garbage, we didn't even want it. To be honest, I wasn't expecting that. Bonus!

But, this challenge approach has not all been about what I consume, it has also been about exercise. I rely on public transit and I walk a lot but I am not someone who exercises for the sole purpose of exercising. I also found that after I felt a little relief from the residual chemo fatigue, Tamoxifen was right there to pick up where chemo left off - I am still tired from cancer. Needless to say, I haven't had the most energy in the past two and a half years. But regardless, I decided that on October 1st I was going to join a gym and go for five days a week for the whole month. I could quit on November 1st if I wanted to but I had to make it through the month and I had to go five days a week. When I go to the gym (I have been a member at a few gyms over the years) I am not someone who likes to ease into it. Every day that I have gone, I've burn 800-1000 calories (an hour on the elliptical and then weights). The first week was the hardest. I was so warm for hours after my workout because my circulation was going crazy and then I would freeze for another few hours. I was sore all the time. I was so tired. I didn't think I could last the week let alone the month. I just kept telling myself that I want to enjoy things like baseball again (which I haven't played since cancer), and I am getting married at some point in the future, and I know about the correlations between being overweight and the recurrence of breast cancer, and an hour on the elliptical gives me time to think about the good stuff - the endorphins just encourage good thoughts. Well, wouldn't you know it, I'm still going to the gym 52 days later, five days a week and I am down 17.5lbs. At the 15.5lbs mark, I had officially lost the last of my chemo/cancer weight. Did that ever feel good! F-U cancer, and the horse you rode in on.

I am going in next Tuesday (the 3rd) for the last of my three surgeries. I am getting my expanders exchanged for implants. So that means six weeks of no elliptical or weights. I am nervous about the break in my routine but let's be honest, no pop is much harder than being on the elliptical for five hours a week and I'm ten months deep with the 'no pop thing' so I should be able to get back to it mid-January.

I know what it's like to feel like you need to make a change but feel powerless. Consider giving yourself a seven day challenge. Start with something achievable (which is different than easy). Giving up pop was achievable but it was not easy. Eating more vegetables was achievable but not always easy. As a cancer survivor, it is so easy to feel the pressures of needing to change your entire life over night but instead of trying change everything and succeed at nothing, try changing one thing at a time; you'll be surprised how long seven days can last.

Thursday, August 22, 2013

A Natural Ambition

Having cancer in your twenties presents issues that you may otherwise not face if diagnosed in your fifties or sixties. Issues include; worrying about student loans, being isolated from your peers, the loss of your womanhood in your prime (in my case, part of it was surgically removed) and the ever-looming (in)fertility.

I had six rounds of chemo and Tamoxifen has put me in a medically induced menopause. Ah, menopause at 27, 28, and now as of last Wednesday, 29. Yep, sure am living the dream these days. I still get my period and (because they just don't have the research about young women on Tamoxifen) they aren't exactly sure if that is a good thing or not - I've been told two opposing viewpoints by two different oncologists. At the start of each period, I have a sense of relief because for another month, I have managed to avoid permanent menopause at 29 years old.

With social media, I am bombarded with pictures of babies. When I see friends who post pictures of their 'positive pee stick' (yes people do that), or their growing bellies or their newborns, 1 year olds or the first day of school pictures, I feel lost.

Not one part of me is angry with friends or frustrated with them, shit if I had a baby, I'd be plastering those pictures on Facebook, Twitter, Tumbler, can you post pictures on LinkedIn?,;you get my drift. But, it seems that if my double mastectomied chest wasn't reminder enough that I may never have children, Facebook and Instagram are right there to reinforce it.
Although I know that being pregnant would not be the safest thing right now, I think about it all the time. In an alternate universe where I didn't have cancer, I would be pregnant with my second baby and in love with my first. But we don't live in an alternate universe and here's my reality; last month, after I was about four weeks post-op, I missed my period. That is my first missed period since chemo ended. On about day three of being late, the thought crossed my mind that I may be pregnant. I have an IUD in place but weirder things have happened. I'm not going to lie to you, day three to five was a bit of a mind-fuck (excuse the language but I have devoted a solid three minutes to coming up with a less abrasive, equally descriptive word to describe my feelings and I couldn't). I kept thinking 'I can't be pregnant, I'm on Tamoxifen, I have an IUD, I only have a 40% chance, there's no way' and the other part of me was cheering, 'I could be PREGNANT.'

On day six, I took a pregnancy test and although I knew better, I had hope (for some twisted, delusional reason). I stared at that test waiting for the second line to appear to signify pregnancy and although the test said results would appear in 90 seconds, I gave that second line at least seven minutes to appear. The second line never showed up but on day seven, my period did. It was late (I'm assuming from the anesthesia and myriad of prescription drugs that I was on after my second mastectomy only weeks before). I know that I can't get pregnant right now (not 'can't' like it's impossible but 'can't' like I'm still in treatment [Tamoxifen]) but that second line would have meant that pregnancy was possible.

I know women who have had babies after chemo, I have even met said babies. I know this isn't impossible and although I am not one for statistics, I had a less than 1% chance of getting breast cancer at 26 so a 40% chance of getting pregnant seems pretty high with my track record. So many friends are enjoying the happiness of parenthood while I'm waiting for my next surgery; being the one who has loved kids since I was six years old and being surrounded by so many people who seem to get pregnant by what seems to be just laughing too hard is heartbreaking.

So in true Katie fashion, in heartbreaking times, I like to torture myself with music that really drives the point home. You know when you hear a song and it’s like it was written for you? Look at these lyrics:
It felt like a given, something a woman’s born to do
A natural ambition to see a reflection of me and you
I'd feel so guilty, if that was a gift I couldn’t give
Could you be happy if life wasn’t how we pictured it?
And sometimes I just want to wait it out to prove everybody wrong
And I need your help to move on ‘cause you know it’s so hard, so hard.

Yep, lyrically, that about sums it up!

The thing about cancer is that it affects so many lives, regardless of whose body it’s harbouring. Keith has had so many choices made for him without ever being asked (and without ever complaining) but how do I not feel guilty for making him wait, for not knowing if I can give him the gift of life?

A few months ago, Keith and I were lying in bed and I asked him if he could picture his life without kids. The conversation went like this:
Katie ‘If I can’t give you children, will you still be happy?’
In true Keith fashion he said ‘It’s not a matter of you giving me children, we can either have children or we can’t.'

Keith and I have stuck with the idea that ‘if it’s meant to be then it’s meant to be'. I will be done Tamoxifen when I'm 32 and although that is not old when it comes to reproduction, chemo accelerates the aging of your ovaries and they could be 'as old as' 44 when I'm only 32.
On March 16th, 2011, my oncology surgeon told me that chemo would significantly lower my chances of having a baby so much that it was more likely that I wouldn't have children. I cried more that day than the five days prior when I found out I had aggressive stage two breast cancer.

I've talked with a few girlfriends about the way we used to see the world. When we were in high school we imagined graduating from university, getting a good job, marrying our prince charming, having a few kids and living the dream. Life was easy, dreams were attainable, the future was definite. Now, some of us have dealt with loss and pain and hurdles that have not only tripped us but have made it hard to get back up. I know that cancer has taught me lessons about life that many adults twice my age still haven't learned but I beg the greater powers at be not to teach me the lesson of being a childless woman.

And sometimes I just want to wait it out to prove everybody wrong
And I need your help to move on ‘cause you know it’s so hard, so hard.

Sunday, June 16, 2013

Turtleneck Nuptials

We stood, with our arms wrapped around each other. He thought it was a long hug, I knew that it was my security blanket. He felt my lungs hiccup with air and asked 'what's wrong', I said in a quivered voice 'I'm scared'.


After being back from India for two weeks, after feeling good about life and living, after feeling a little more fulfilled than before I left and feeling worthy of love, Keith proposed to me. I have been giddy ever since. I am so proud to wear his ring, I am so proud to be his wife someday. I am proud to call him mine.

I haven't tried on a wedding dress yet as I feel like my mastectomy scars will be the spotlight instead of the dress. This prompted a call to my plastic surgeon's office where I had been about five month prior discussing reconstruction options.

So as a refresher, I had a mastectomy in 2011 and at the same time, I had a tissue expander put in as well as having a reduction on my left side to even things out. Once I was fully expanded, the plan was to have the exchange surgery in January of 2012 and 36 hours before my scheduled surgery, my plastic surgeon called saying there was a mix up/ no OR time / he couldn't reschedule me until May / more prolonged cancer garbage. I decided to go back to work in March of 2012 and in August I decided to change plastic surgeons, to someone who I had met and liked immediately and who I knew did great work. I saw her in November and we too had a plan.

During my November appointment, I came to the realization that as long as I had one reduced breast (that I felt like wasn't even my own anymore) and one (partially) reconstructed breast, I would always have one breast that always had cancer in it. They would never be a pair, a set, or a match.

Over the next few months, Keith and I discussed a prophylactic mastectomy on my left side. We weighed the pros and cons and I came to the conclusion that I wanted to get it done. So I called my 'new' plastic surgeon's office in March, once my Indian travels were over, and at that point, I realized that I had fallen through the cracks again. My file had not been dealt with, faxes hadn't been made, calls had not been dialed, I was in limbo again. After expressing my extreme frustration with waiting five months with no resolve, the ball started rolling again.

As a side note, it is extremely difficult to be an advocate for yourself when it comes to reconstruction - let me tell you why. There is an immense sense of vanity that comes along with wanting to have breasts again. I can't imagine that this vanity exists with many other body parts that are reconstructed but because a breast is so closely related to sexuality, it is so incredibly easy to feel vain when trying to regain a part of your body that cancer stole from you.

So, as the ball was rolling again, my plastic surgeon's office advised me to call my oncology surgeon's office to let her know that I wanted the prophylactic mastectomy (which I would like to point out that I wanted in the first place in 2011). I made the call and was left a voicemail in return within a few days explaining that she was not taking on any new patients for prophylactic mastectomies and that I would have to go through my family doctor to get a referral to a new oncology surgeon to do the prophylactic mastectomy. This was all in a voicemail!!!

I called the office back, said that was unacceptable and that I wasn't going to start all over with a brand new surgeon especially because I am not a new patient and that could take years. And then emotion took over and I said 'I am engaged and I refuse to wear a turtleneck wedding dress at my own wedding. I need to move on and without these surgeries, I won't be able to.' The receptionist felt awful (which was not my intention, I just became so emotional) and said she would speak to my oncology surgeon and would get back to me. Within a few days, she got back to me and let me know that she would do the procedure for me.

So, now we are back on track and I presume that surgery will be hopefully by the end of the year until, oh wait, my expander ruptured on May 24th because really, why wouldn't it?? So, in to the plastic surgeon I go and surgery has just become an ASAP situation. Needless to say, surgery is on Tuesday, in about 36 hours, and I am going through a whole whirlwind of emotions.

Because I have wanted a prophylactic mastectomy for two years now and have been told for all 24 months that it is NOT what I want, I feel relieved that it is finally happening however a few realities have set in. Tonight will be my last Sunday night with a real breast and although it has been reduced and it is not the way it was made originally, it is my own tissue and it is mine. I take some comfort in that. Tomorrow will be my last Monday and my last day with my breast and I know that thought will consume my day. How do you prepare for losing a body part and having it be replaced by something that is known in daily conversation as 'fake'?

The other day someone asked how big I was going to go (kind of personal but I am pretty open about it). I told her that it isn't entirely up to me because we have to make sure the skin and muscle stretch to a certain size, your body shape has an impact as well as other factors. Anyway, this woman seemed surprised that it wasn't just as easy as saying 'Double D, please'. I explained to her that this wasn't a breast augmentation but instead a reconstruction - after she still looked confused and confirmed that confusion by saying 'Oh really?', I said 'picture cutting your hand off, and trying to rebuild it, not easy, right?'. I think that drove the point home.

I often wonder if my breasts will ever be sexual again. I am still in the process of mourning the loss of my first breast, and I will have to mourn my second as well but with the reconstruction will I feel like I just have bumps on my chest that fill the place of the location where my breasts used to be or will they feel like breasts one day? I had breasts for 26 years and so by the time I'm 52, I will have had implants for just as long - will I be used to them by then?

I have been thinking about my first surgery a lot. I think about that scared girl who hugged her mom, dad and mother-in-law before she had to register for her cancer surgery. The hospital was incredible and let Keith come with me as far as almost the OR but I was scared. I was naive and somehow the word 'mastectomy', although knowing it meant the removal of the entire breast, did not have the full impact on me until I saw the flat space on my chest. In the case of my first surgery, ignorance was bliss. This time, I know exactly what I am going in for. I am still a little unsure though, how do I prepare for the physical and mental pain that this will cause having known how painful it was in the past? In the past year or so, I have thought about that scared girl and I have thought about what I would say to her knowing what I know now. Then today, I revert back to that scared girl and I feel no farther ahead. I feel so petrified to go through with this that I have spent most of the day crying.

It's funny because I feel like I have known the right thing to say to so many cancer patients that I have met as a result of my own cancer and I usually feel like I provide some comfort in the things that I say but now that it's my turn, now that I need the pep talk or the right words, I have nothing to say to myself. I am scared, that's all I keep coming up with.

At the pre-op last week, the nurse said, 'Now you've had a mastectomy already?' and once I nodded she said 'because of cancer, correct?'. I nodded again. And then she said generically 'Wow, you're young.' At the time I just nodded, smiled and said my generic 'Yep, and it's not in my family history nor do I have the BRCA gene.' You can tell that I have maybe had this conversation 100 times before. It wasn't until this weekend that I finally thought, you know, maybe a double mastectomy at 28 years old is a little young - ya, I guess it's even a 'Holy shit, she's only 28' kinda young. You just start getting used to it I guess but somehow the word 'double' preceding the word 'mastectomy' takes it up a notch for me.

Somehow I have found strength in the thought that this time, if I want to say 'no' or don't want to go through with the surgery, I can because this one isn't cancer's decision, it's mine. By having a choice this time, I feel a little more in control and that I have a little more power. Knowing that I could just walk away from this calms me down a little and knowing that in order to grow my breasts back, this is the way it has to be done gives me strength.

Even though I have experienced this once before, I just don't know how to get a mastectomy. Luckily, having been born with only two breasts, this is the last time I will have to navigate the experience. The two and a half lines at the start of this entry were about today, in the living room, just Keith and I. I have spent a lot of today crying merely because I don't know how I'm going to go through this again.

Wednesday, April 17, 2013

Eureka! It's Not About You!

Months ago, I was asked to speak at the National Women's Show in April. It's easy to say 'Yes' to something when it is months away. The day slowly crept up and before I knew it, it was this past weekend.

I shot my mouth off and invited my mom and aunt to come up for the weekend as I thought it would be a great opportunity to spend the weekend together. Actually, while I was growing up, my mom, my aunt and I would all drive to Montreal twice a year to see my other aunt for the weekend. When I was fifteen, my aunt from Montreal died from pancreatic cancer and so I thought having my mom and aunt come to watch me speak about cancer was somewhat symbolic. As the day got closer, I started to get nervous because I was not only asked to speak, but I was asked to speak for 20 minutes. The longest I had spoken at an event was about 15 minutes and although the time whizzes by, my fear is that no one wants to hear about cancer for 20 minutes.

Regardless, I cranked out a speech and included challenges, hurdles, sweet stories, and times when I laughed in cancer's face. I went over it and over it on Saturday morning in preparation for Sunday afternoon's 2:30 slot. I practiced on Keith too many times to count and after the trillionth time, he said 'You're treating this like an oral presentation. Treat it like you are just having a conversation.' Don't tell him I said this, but he was right. That's exactly what was wrong. I was trying to memorize my own story. I started looking at my 'speech' less as a grade six school presentation and more like a chat with my girlfriends and I felt much more comfortable. Why didn't I think of that?

My mom and aunt got into town at about 4:30 and we met them for dinner. We had a delightful Chinese meal and afterwards, I opened my fortune cookie and it read like this:

Photo: Ok, ok, I get it. Move on.

Dammit, I know. I get it. Move on! Quit dwelling on cancer. Enjoy life. You survived. Sometimes, I feel like life is begging me to move on and I just keep wanting to hold on because by moving on I am accepting that cancer was allowed to do this to me and I am admitting that I have accepted it. And by moving on, I fear that I won't know who I am without cancer by my side. And if I move on, what is my excuse of being tired, and not having a breast?

That was a bit of an aside but it'll tie in later, I promise. Anyway, Keith left us girls and we stayed up much too late chatting. I took one last attempt at practicing my speech then closed my eyes.

We headed to the women's show at about 11am the next morning and as my mom and aunt went from booth to booth my stomach got tighter and tighter. I read that there were supposed to be 35 000 women go through this show this weekend and although I saw the stage that I was speaking on and saw that there was only room for about 35 women to sit while listening to me, I was freaking out a little bit. I have spoken in front of eight hundred people before, why was I nervous about this?

I started thinking about being perfect. I started thinking about being hilarious at the right times and getting the attention of the right person so that I could share my story at the next big event or write an article for a magazine or start a new career in public speaking (I think you get the drift and maybe a little of the delusion, too).

And then as I watched my mom and aunt booth-hop from the end of the aisles anxiously waiting for 2:30pm, I all of a sudden realized that this wasn't about me. This wasn't about how 'well' I did. This wasn't about being funny, or witty, or clever or smart looking. This was about that one woman in the audience who felt alone until today or that one woman who felt a lump but she was told that she was too young to have breast cancer. Like a huge bag of hammers slamming over my head, it hit me that this wasn't about me.

I had a sense of calm come over me and as I flicked my headset microphone from 'off' to 'on' I was completely ready to go on stage. So here we were, it was 2:30pm and it was time for the Professional Breast Cancer Ass-Kicker to go on stage.

As I was about a minute into my speech, a woman in her fifties came over, sat down and had a look on her face that said 'Oh good, I didn't miss this.' Throughout the twenty minutes, she did a lot of nodding, some crying, some laughing, and a lot of tear wiping. When I was finished, I got off the stage and went over to my mom and aunt. The woman in the audience was speaking to one of the women who belonged to the group that I was speaking for. I could see that she had been crying and so I went over to her and put my hand on her back and asked if she was ok. She told me that she had been diagnosed when she was 20 and then again when she was 40 and she could relate to so much of what I said (she continued to wipe the tears). Then, what made it all worth it was her saying, 'You know, I didn't know why I came here today. I came by myself and wasn't sure why I was here. Now I know. I came to hear you speak.' Regardless of being out of treatment for years, she still had pain, and still had tears that hadn't been cried yet. She got the contact information for the group that I was speaking for and is going to contact them for support. Why did I ever think that this was about me?

It's women like this that make me get up in front of ten, a hundred, or eight hundred people and share my story. Once I realized that it wasn't about me, I was able to help someone - the same way I was in India. I struggled for the first couple of days of my placement in Delhi because I didn't know where to start, or how I would fit in or how the children would take to me but once I stopped making it about me and made it about the children, learning happened. This weekend, once I made my speech about someone else, I was able and prepared and that woman ended up getting what she needed from my speech.

I think that damn fortune cookie was right and I think as soon as I realized that it wasn't about me, I was able to take another step towards closing my cancer chapter - not leaving cancer behind, but growing from my experience in order to help others and starting my next chapter. I think I am learning to use my story to help someone else rather than needing the help myself. Oh Lord, is this what they call an epiphany?

Monday, April 8, 2013

Cancerville: Population Me

I know, I know, it has been weeks – months even. I don’t even know if I have a good excuse.

Well, I went to India, that’s gotta count for something. And, yes, it was amazing. I just keep thinking, ‘India exists’ and not just in textbooks anymore. I went with A Fresh Chapter along with 11 other survivors, Terri (the founder of A Fresh Chapter) and Hal, the world’s greatest digital story teller. I volunteered at a school that doesn’t have enough money for an actual school structure so we taught in a park. I have 1400 pictures to prove that I was there, friendships that will last a lifetime, and my heart was stolen about seven different times by different children whose different eyes told different stories.

About three weeks before I left for India, I asked Terri if it would be ok if I just told people that I went to India but didn’t actually go because I was scared, shitless. I was afraid for my safety. I was afraid of how the poverty was going to affect me. I was afraid that I was going to teach nothing to the children. I was afraid that I was going to be overwhelmed. And you know what happened? None of it.

I projected this sadness and depression on the people of Delhi before I even met them because I assumed that the importance that we put into ‘stuff’ here whether that means clothes, possessions, cars, money, accessories, etc. was what the people of India would be missing but instead I saw more smiles than I see here. I saw more pride in one person showing me her dirt floor home than I see here. I mean, I think it’s all safe to say that we all know that it’s what’s on the inside that counts, and that money can’t buy love/life/experience/personality/insertanythingelsethatyoucan’tbuywithmoneyhere but until you see someone surviving, nay, thriving on $200/month, until you see children sitting, LISTENING, and happy to be at school because to them it’s a privilege not a right, and until you see a woman smile back at you simply because you have taken the time to acknowledge her, it’s difficult to express what that’s like.

I have struggled with the question ‘How was your trip?’. Quite often, I just say ‘Oh, it was great.’ because I don’t know how to formulate my thoughts and experiences into words or into a concise explanation that isn’t going to make someone want to gouge their eyes out.

What I think I can put into words is the feeling of giving. I’ll try to explain. Since the day that I was diagnosed, I became the focus of a lot of people’s lives. Every time I walked into a room, people would stop talking and start asking about me, if I needed anything, about my latest doctor’s appointment and when I was going to grow my boob back. I got quite used to talking about myself and expecting the conversation to be about me (now, I’m not going to lie to you, before cancer I quite enjoyed attention and talking about myself, it’s just that cancer really lit up that spotlight).

Unintentionally, sometimes I think I would make the conversation about me because I just became used to it. And because of this, I lived in a cancer bubble, where it was all cancer, all the time. And, I think I have dreaded the day that someone forgets that I had cancer,that I struggled, that I survived because when that day happens, I will feel like my entire experience will be undermined. If I accept that it's time to move on, I feel like I am contradicting that lesson that I have been trying to teach so many people - 'Cancer doesn't end when treatment does.' I don't feel any less associated with cancer now than when I was in the middle of treatment. The way I keep explaining it is through the loss of a loved one. I have explained many times how cancer is about loss and so when you compare it to the loss of a loved one, it's not like once you bury someone, you get in your car, drive out of the cemetery and say 'Geez, that was a hard week. I'm glad that's over.' It doesn't work like that. And cancer doesn't work like that either. I keep waiting to wake up one day without this cancer-monkey on my back but the little banana eating piece of shit won't leave. Ok, sorry, that may have been a little angry. In saying all of this, something that I did experience in India that I have yet to experience here was that with the children at my placement, I didn’t have time to worry about me and worry if these children remembered that I didn’t have a breast, the focus wasn’t on me, it was on them and it felt wonderful.

Although this was a wonderful feeling, to take a little from what Terri and I have talked about since our return to Canada, I think my problem is that I expected India to not be A Fresh Chapter in my life, but instead be the entire book. I expected to fly to India for two weeks, volunteer, meet new people, and become an entirely enlightened, clear, sorted, healed person. I put the pressure of my post-cancer struggles and (if I can coin a term here for a minute that my cancer peeps may understand) my 'stuckness' on India and so when I came home and I wasn't transformed (Changed? Yes. An entirely different person? No), I felt like I had failed at being a cancer survivor - regardless of how many times I tell other people that there is no right way to do this cancer thing.

This has led to a little soul searching and sometimes I wonder if I stay in my cancer bubble, in Cancerville (population me) because I don’t want anyone to forget that I had CANCER and the thought of not mentioning it within 20 minutes of meeting someone new makes me feel like I am lying to them because I have learned to identify with cancer, it is part of me, and I’m used to it, and I want to teach people about it (for example – the other day someone said to me [after finding out moments before that I had cancer] 'Well, I'm glad you made it.' Huh? I'm glad you made it? Isn't that kind of comparable to 'Hey, I'm glad you didn't die'? Sometimes I am a little sensitive to these things but when I got home, Keith assured me that that wasn't okay to say.).

I mean there's also the obvious angle of 'So, what you're saying is, if you attempt to move on, you won't be able to associate with cancer, and without cancer, who are you?' Yes, I have thought of this. And in a weird way, I think the timing of my cancer has somewhat defined me. I had just graduated for the third time from university and I was trying to find myself, trying to start a career and make a name for myself. I found a job and after 15 months, I was diagnosed with cancer. By the time I went back to work, I was as much a professional cancer patient as I was a professional working girl. At that point, the majority of my career life had been spent in a hospital. So who am I without cancer? I don't really know and to be honest, it frightens me a little to think about it.

How am I supposed to move on from cancer when the physical and emotional effects are at the forefront of my life?

Thursday, January 31, 2013

A Slight Resolution

The other day I was sitting in my office, crunching numbers and pushing paper – needless to say, my brain wasn’t all that engaged – and I started thinking ‘If I could be anyone, in the entire world, who would it be?’ I scrolled through a few beautiful actresses, rich people crossed my mind, people who have never had cancer came rushing in too but I kept coming back to the same person – me. Now, that is not a normal reaction to this question that I’ve been asking myself for as long as I can remember.
I've spent many years wanting to be anyone skinny (I’m still kinda partial to this one), I spent years wanting to be someone rich, someone famous, someone who has traveled the world, someone who wasn’t afraid of needles and a variety of other people who had traits that I admired or characteristics that I envied. It was only the other day that I realized that I wanted to be me.
I have said this before, but although getting cancer at 26 wasn’t exactly what I would call ideal, I have learned life lessons in my twenties that I may not have learned until my sixties or maybe even ever. Don’t get me wrong, I don’t buy into that whole ‘Cancer is a gift’ garbage, I am just trying to turn a horrible situation into a manageable one.
I think Keith and I have done things that we wouldn’t have done otherwise, like our Christmas trip to NYC. I think we would have put that off, until ‘next year’ and India – can you believe that I’m going to India? I fly out on the 14th of February to Delhi along with 11 other cancer survivors to volunteer for two weeks. I am at a point in this cancer business (I just can’t write ‘journey’ anymore) where I am starting not to feel like a cancer patient anymore and I feel as though it’s time to look to the future rather than the past. I am hoping that this adventure helps answer the 'now what' post-cancer question. I would have never gone to India if I didn't have cancer and didn't have questions that needed answering. It is way out of my comfort zone and I have never been more excited about something.
I am also not trying to convince anyone (including myself) that my life is problem-free or perfect. My weight is at the forefront of my thoughts every day (who am I kidding, it's every minute) and this one breast thing is really getting old. I don't have much money and I owe a lot to the student-loan department of the government. I went to school for six years for three degrees in education and I am working in accounting. I still rent an apartment and aspire to own a home one day. I live four hours away from family and am missing out on our nieces and nephews milestones.
I am alive. I have surrounded myself with the kind of people that you only hear about in books. Keith and I spend the majority of our time laughing at cancer, at each other, and together. I have a roof over my head, food in my belly, and a pony tail. Although not having a breast does give me some anxiety and only feeds into my body image issues, I am starting to accept that it was part of the price that had to be paid to stay alive. I am slow moving on the reconstruction train but I am getting there.
I am surrounding by such generous, kind, and caring people. Your know, after coming to and supporting my benefit in 2011, friends and family dug deep into their pockets again and donated to Team Katie at the Relay for Life and then when I told people I was going to India as part of my survivorship business, they stepped up again to get me there. Saying 'thank you' seems like a slap in the face compared to how I feel. I am so grateful to so many people.
Some days I struggle, some days the bone pain from chemo that still ails me puts me into a recurrence tail spin and other days I can convince myself that it's the chemo still working hard to fend off any potential cancer. I have the regular challenges that everyone has - too much to do - not enough time - need to organize - don't eat this - gotta eat that - and so on - but I think I have just learned how to compartmentalize what's important, what needs to be dealt with, and what can wait. I've learned to take a deep breath and work my way through life. I feel like I am living and not plowing through each year so I can get to the next like I used to. I can safely say that I am enjoying each day.
Keith and I have made a slight resolution. We have decided to do what makes us feel good in 2013. I am very hard on myself for just about everything and many times it results in guilt and struggle. I'm going to do my best to reassure myself that I am enough. As I have said, 2011 was awful, 2012 was great, and if this pattern continues, 2013 is going to be spectacular!

Thursday, January 17, 2013

The Blame Game

As time passed from my initial diagnosis, more and more people asked me the reason for my cancer. I think they wanted an answer so it gave them something to avoid and somehow provided them with more protection from the disease. They were hoping that I said ‘Uh, well, when I was a kid I swallowed some poisonous floor cleaner and it gathered in my breast and turned into a tumour’ so they could in turn say ‘Oh, thank God I never swallowed floor cleaner and therefore will never have cancer.’ People seemed to want to be able to put their blame somewhere, so they felt less threatened by the reality of cancer and it seemed harder and harder for people to grasp the concept that my cancer is a big question mark.

Never the less, I have been told by many, many people, who don’t have any medical or oncological training, that my cancer has a cause. Some people think it was the hormones from the birth control pill, others think it was stress, others think it was the food I eat or the deodorant I used, and others have blamed it on our environment. I continue to assure them that my entire medical team is baffled but regardless of genetic testing being negative, having no family history, and being only twenty six when I was diagnosed, they feel as though they know the answer.

In the beginning, I would let this kind of thing go, or just agree with the different conclusions to the cause of my cancer but I am starting to get annoyed – pissed even – because I think this blame game that we are playing is detrimental to our health. On Facebook yesterday I saw a picture of a bald woman, obviously hooked up to chemo, with IV bags lingering everywhere with a picture of a green fruit in the forefront and it said ‘The Soursop [it is some kind of fruit] – Totally ignored by the criminally murderous pharmaceutical industry, this medicinal tropical fruit kills cancer cells up to 10, 000 times more effectively than their expensive failure called chemotherapy with no side effects.’ Are you fucking serious? This just pisses me off. This picture blames me for losing my hair, for feeling like shit for 6 months, for not having a breast anymore, for taking a year off work, for everything that comes with cancer. It’s saying that I had a choice and when I had to choose my course of survival, I chose chemotherapy; a treatment that has horrible side effects and may have left me infertile instead of a simple fruit. What an idiot! The choice is so obvious, pick the fruit you moron, you like fruit, and it's 10000 times better than chemo and the bonus? No side effects. Man, people are stupid who decide to go through chemo. (You see where I’m going with this?).

What pisses me off even more is that I know of women who have been fit their entire lives, who don’t smoke or drink and who eat organically and guess what – they got cancer. Is their cancer somehow not their fault but because I didn’t eat organically and am overweight, my cancer is my fault? I was told by a doctor who specializes in nutrition and health that at 26 years old, it is physically impossible for me to be the reason for my cancer – I have not had enough time to be the cause because in 26 years, my body cannot produce a tumour because of something that I’ve done. Wow, did that feel good to hear. It doesn’t give me a free pass to live a reckless life but it does relieve some of the guilt that I have felt about somehow causing my own cancer due to stupid shit like this Facebook post (as someone who doesn’t smoke, drinks maybe 3 drinks a month, and has a relatively healthy diet).

This soursop fruit might be wonderfully healthy and it might have cancer killing agents but I absolutely detest when people who have never had cancer preach about how they would react if they were faced with it. I fully support alternative medicine and if anything, I am envious of those who are brave enough to refuse chemo because they believe in a more natural route but to say that chemo doesn’t work or that drinking green tea will cure the aggressive cancer tumour growing at a rapid pace in my breast is morally irresponsible and ill informed. And oddly enough, in all of the research that I did on breast cancer, treatment, chemo, fertility, etc. etc. etc. I found actual data and research about how chemo works and the survival rate and yet, I didn’t come across one thing that said ‘soursop is the cure.’

When I initially read this Facebook post (along with a variety of other ones that say marijuana will cure cancer, eating sugar is a sure way to get cancer, drinking green tea is a sure way to avoid it, etc.) I was pretty angry and it led to a tweet that resulted in a number of replies that I want to share with you (keep in mind that you only have 140 characters in a tweet so grammar doesn’t really count on Twitter).

My original tweet – ‘I hate reading about how people who have never had cancer would not do chemo and would instead eat a certain fruit or drink a special tea.


From @ChristinaNewman – ‘talking to hubby about this – I used to be that girl – refused treatment for 11 months till I realized I would die w/o treatment.’ I loved her honesty. You just don’t know how you would react unless you are faced with these decisions.

From @zapladybug ‘When I was first diagnosed *two* people told me green tea cures #breastcancer. Two. To my face. And they were sober.’ I loved this. It was retweet worthy. Seriously, who says that?

From @arielnoriega5 ‘Agreed! People think they would do one thing but when you are put in the situation, one thing is clear… treatment!! #Life’. Yep, couldn’t agree more.

From @terriwingham ‘Seriously. I think it’s total garbage as I sip my red wine ;-) Everything in moderation even moderation is my mantra :)’. Terri, you’re so friggin’ great!

From @slieks ‘Even worse when they try to convince you it’s the key to your survival.’ Couldn’t have said it better myself.

From @lexieann73 ‘Agree! Unless they have been there and done that they should keep their mouth shut.’ I don’t pretend to know how I would treat MS if I was diagnosed and the same should be said for cancer.

From @iamnotcancer ‘After I finished chemo, an acquaintance told me a friend’s mother was cured by marijuana oil. Pot cures.’ Don’t forget your green tea!

From @nancebeth ‘I was told that grilled food caused my #breastcancer and that there was an herbal tea available that would cure it’. Aha! I knew there was a tea for that.

To my cancer peeps – thanks for listening, this post was brewing for months. To non-cancer peeps, please be very conscious of telling people why you think they have cancer and how to treat their cancer and don’t forget that sometimes bad cancer happens to good people, and instead of trying to get to the bottom of it, accept it – we have.

Thursday, January 3, 2013

There Is No Less Pain

Today, I write with a heavy heart.
On the 28th of December, I got an e-mail from someone at YACC (Young Adult Cancer Canada) and the subject said ‘Open when you have some time and privacy.’ I was in my office, at work, and for some reason, when I heard the ‘ding’ of my phone, I checked it. I didn’t really read the subject and instead just started reading the e-mail. It was an e-mail that informed us ‘YACCers’ that one of our own had died, on Christmas Day.
Back in May, Keith and I went out to Alberta for a YACC Retreat and I was lucky enough to meet Naomi. Naomi was one of about 25 other survivors, caregivers, and healthcare providers at the retreat. We all arrived as strangers and we all left as hugging friends and although it was mentioned (as a form of preparation) that sometimes we lose some of our friends to cancer, I just never really expected it to happen. Although Naomi and I didn’t stay in contact after the retreat, we were united by cancer and by the experience of the retreat.
Reading of her passing was difficult. I was grateful that my office door was closed as I shed a few tears at my desk. I have never asked myself why I got cancer, it really doesn’t matter, and to be honest, I have convinced myself that it’s so my mom, mother-in-law, sister, sister-in-laws, aunts, cousins, and nieces never have to go through it. I do however ask myself why I was spared. Why was I ‘cured’ while others are diagnosed with a more aggressive cancer or a cancer that is farther along? Naomi’s family and new husband don’t hurt any less than my family would, there is no less pain in the world because Naomi died from cancer and I didn’t.
This is the first time that I have experienced someone dying from the same thing that I had and I don’t know how to deal with it. I am having a hard time getting through this blog entry - I’ve wanted to write something for a few days now but I just haven’t found the right words or the strength. I so wanted to go to her wake and I selfishly didn’t because I was too scared. I was afraid that I would sob, loudly, the entire time. I didn’t want to take away from her, I didn’t want anyone consoling me when it wasn’t about me, it was about her. On the 31st, via facebook, it was ‘Wear something Sparkly for Naomi Day’ and I participated; I felt like I was doing something in an otherwise helpless situation.
I feel as though cancer is that one thing you hope your doctor doesn’t say. It’s what we are all afraid of happening. For some reason, cancer didn’t seem as scary to me once I finished treatment as it did before my diagnosis because I knew that I could survive it. I mean the thought of having it again is horrifying but for some reason, it doesn’t scare me in the same way that it once did, that is, up until I found out about Naomi. It’s like her death has really brought everything to the surface again, it makes cancer real, the feelings new, and the pain as fresh as it was on March 11th, 2011.
Up until I had cancer, when I heard about someone who had died, I thought about the family of the deceased and how they were coping and to be honest, I have thought about her family and her husband every day since I found out. But since cancer, when I hear of someone who has died, I have started thinking about what he or she thought about during his or her last day on earth. I think about the way I would be, and if I would be crying because I’d be scared to be alone, I think I’d be scared for what the after-life looks like, I'd think about what I hadn't accomplished and how everyone would deal with my death. Does that make sense? I guess it’s because for the first time in my life, I could picture myself in a hospital bed, surrounded by family…
Although I put a lot of pressure on myself to be the 'old Katie' I know that deep down she is gone and along with 'new Katie' comes new challenges, new heartache, and new loss and although I would like to resign as a cancer survivor and just be me again, I am learning that alongside cancer comes continual struggle well after treatment is over.
I want to dedicate this entry to Naomi. You were a star on earth and now you are a star in the sky. Thank you for brightening my life.