Wednesday, October 26, 2011

Cancer Limbo

I've spent the last week trying to think of an idea for this entry. Usually, they just come to me, usually I can open up my laptop, go to the link and start to write but this week is different. When it comes to cancer, I now write 'I used to have cancer', when it comes to doctor's appointments, my next one isn't until the end of November, surgery isn't until January and I haven't been 'cleared' to go back to work until February so what can I talk about? I am no longer consumed with it the way I was however, instead of dealing with the day to day aspects of cancer, now it is part of my way of life.

In the very beginning of my diagnosis (the first week), I didn't want anyone to know that I had cancer because I was embarrassed and I needed to get my head wrapped around the idea before I started sharing it with others. Then, I started telling people so they were aware of what I was going through. That slowly progressed into telling EVERYONE because I wanted women to know that cancer doesn't discriminate against age or family history. Now, my hair is growing back (it looks like I just have a bad hair cut instead of having gone through chemo), I'm not being monitored weekly by medical professionals, and treatment is officially done. It's like there's an expectation to go ahead and start healing when really I'm just starting to realize that I was diagnosed with cancer 7 1/2 months ago.

The thought of getting used to life the way it used to be is scary because I don't want to tempt fate. I don't want to foolishly start 'living' knowing that my body may betray me again. It's like I'm in this weird limbo... treatment is still so recent but at the same time diagnosis seems so far away. It's like I'm at some pivotal moment in life where staying at this stage is safe but stagnant whereas taking a leap forward is scary but the benefits may be worth it. I feel like I have these unspoken expectations placed upon me to be/feel better because chemo is over when in reality 8 months ago, I didn't even have cancer.

It was like while I was in treatment, being strong and positive were impressive and now it's almost like they are expected. It's like there's an assumption that because the physical effects of cancer are over, the emotional side should follow and somehow I feel like it has just begun. Treatment may be over but cancer certainly isn't.

At one point last week, I felt a little 'cancered' out. I was invited to go to an event that helped spread breast cancer awareness and I just couldn't go. The thought of saying "26... Yep, I know, and it's not in my family history either." one more time made me want to cry, not because I was sad but because I am so much more than my cancer diagnosis that I wanted to talk about anything else. Sometimes, it feels like I am retelling someone else's story because it still hasn't set it that I've had cancer. It feels like I know this person's story so well but the thought of actually having had cancer is beyond my mental capacity.

I want to help every woman out there, especially the young ones who have just found out that they have breast cancer however I have to find some way to balance my needs, with the pressure (that I put on myself) to be a part of absolutely every breast cancer organization, charity, program, group, etc.. When I was diagnosed I didn't know of any other young women with breast cancer; my surgeon, my post-op nurse, and so many around me said "You're the youngest women I've ever heard of" and although I now know I am not alone, I want the next 20something who hears "You have cancer" to know that she is not alone. And, absolutely every young woman that I have met who has had breast cancer wants to get involved and help other young women. I've been amazed over the past couple of weeks with the incredible women that I have met who have made it their personal mission to 'be there' for young women with breast cancer.

So, the point of this entry? You got me! I don't know, I guess it goes back to a few weeks ago when I talked about being there for someone who has been diagnosed with cancer; let her know you are thinking about her. Cancer doesn't end when treatment does. Also, I guess I wanted to let you into my brain and take a look around. This is such a mishmash of thoughts but I can't really make sense of what's going on up in that head of mine so I didn't think it was fair to make it clear for you when it's still so foggy to me.

What I have written so far was going to be my complete entry and then tonight happened and it all made sense...

So, over the past few weeks, I've been really involved in cancer. I'm taking part in a study for memory/chemo, I'm going to groups, I'm volunteering some of my afternoons for fundraising and tonight I spoke at an event of 100-150 people. In other words, I have taken on a lot and I am now paying for it because I am sick. Today, I had to go to the hospital to pick up some reports then headed over to a group meeting for young women with cancer then got home and dealt with some more insurance garbage then had a melt down.

I'm not trying to be dramatic but sometimes I just seem to be overwhelmed and don't want to have to fight insurance anymore, and wish I had a 'normal' life, I want my breast back, I hate that I've had cancer, I hate that I can navigate you through any hospital just because I'm good at and used to figuring out their layouts, I want to substitute my estrogen inhibiting pills with folic acid pills, my hair is awful, and now I'm sick. I had a bit of break-down today and then I had to put on a smile for this event that I was speaking at. So, I headed out, got to the event early, and at 7:40pm they announced that it was my turn to speak.

I get up there and all the saliva from my mouth disappears (luckily someone noticed and gave me a glass of water). I took a drink, made a joke, and kept going. The microphone had about a half second delay so it was hard to speak when all I could hear myself saying was what I had actually said 1/2 second ago. It was hard to speak because it was like you were trying to speak over someone else. Anyway, all that aside, I was well received - I got my story out there and everyone cheered and clapped when I finished. For the rest of the night women were coming over to me saying that I was brave and inspirational which meant so much to me (I promise, there's a point to this).

Anyway, it all wrapped up at 9:30 and as I was walking down the street to meet Keith, I heard "excuse me" from behind me. I stopped and turned around and a young woman approached me and said "I was in there tonight and I heard your story. How did they find out it was cancer?" So, I went over the whole process of the ultrasounds that led to a mammogram and the eventual biopsy. She said "I found a lump a year ago and the doctor said he would monitor it but they won't do a mammogram because I'm so young." I asked her how old she was and she said she was 35. I reassured her that it probably was nothing but told her to tell her doctor that she now knows of someone who is 26 who was diagnosed and you want further testing. I forced my email address on her in case she had any questions or concerns, no matter how small she thought they may be. She said 'because of you, I am getting a mammogram! I need to know what this is."

In that moment all the other cancer bull shit that I had dealt with today disappeared. In that moment when she said that after hearing my story, she was going to get her lump properly checked out, it made it all worth it. Yes, my mouth was dry and yes, the acoustics weren't great but that girl heard my message and she is going to do something about her lump because I shared my story. It's amazing that I went there to 'teach' and I ended up doing more learning than teaching.

Monday, October 17, 2011

Laughing in Cancer's Face

I like to laugh and even more I like to make other people laugh. I was voted 'funniest female' in our graduating year of high school and I take pride in that (in fact, I think I had it on my resume for a while [I'm not even joking]). Any time I have faced something hard in life, I usually turn to humour. Yes, I do use it sometimes as a defense mechanism and to be honest, I think the reason I started to use humour was because of my weight. I wanted people to describe me as the 'funny girl' instead of the 'fat girl'.

In the beginning of my 'journey' (can someone come up with a different word than 'journey', I am tired of using it), humour would be my first reaction after the tears. After I found out I needed a 2nd surgery (that ended up being cancelled thanks to current cancer research) my facebook status was something along the lines of "Touché cancer, well played. Surgery #2 is May 12" or something like that. Did others find that funny? I don't think so. But it helped me deliver shitty news a-la-Katie and made me feel like I was being myself. I just never let cancer change who I was.

I got an e-mail a few days ago from a friend's mom who had been diagnosed with breast cancer a few years ago and she said 'the kids tell me that you have been really positive during this whole thing, good for you.' I was happy to hear that others saw me as being positive and I think I have humour to thank for that. I have used jokes to help me cope with cancer. I never make fun of others, only myself and my situation but I think it makes people feel comfortable in an otherwise uncomfortable situation. So many people don't know what to say, so when I'm still myself and make some crack about dressing up like Uncle Fester this year for Halloween or having to draw on eyebrows in order to see any expression on my face, it puts every one at ease (including me). I feel like saying, "See, I'm still me, I'm just bald and down a breast."

I remember a friend of mine saying that after you have a baby and you're still recovering in the hospital, you get used to people coming into your room and checking out your business' to ensure you're healing alright. That's the way I felt, showing my boobs started feeling the same as showing someone my elbow or foot; it's just another body part. After surgery, every doctor that I saw wanted to do a quick exam of the new ladies (or should I say lady?). Housekeeping would come into the room to change the garbage and they'd get a free show; I was showing them to everyone assuming that they wanted/needed to see them.

After chemo #5, I ended up in Emerg. because of a fever that wouldn't stop climbing. I put the gown on so that it would open at the front. The nurse came in and said "You have that on backwards", I said "You don't want to see my boobs?" in an almost disappointed way. She said "You're here for a fever, we don't need to see your breasts". I took it off and put the opening at the back.

At my niece's 4th birthday dinner, we were all sitting around the table and she randomly said, "Uncle Keith's a boy." and I said, "No, Uncle Keith's a girl." She said, "Well, he's got a boy hair cut." She had me there. In trying to prepare them for me losing my hair, I said "Auntie Katie is going to cut her hair like Uncle Keith really soon." Now, my sister-in-law's mother (my niece and nephew's grandma) had been diagnosed within a year before me, had chemo and radiation, so these kids were not new to the whole breast cancer thing. My 6 year old nephew pipes up about my 'new hair cut' and says "No, it's going to fall out." All 6 of us adults just burst into laughter. Is my hair falling out funny? No. But having a 6 year old tell it how it is was priceless.

I can list endless hardships that I've had to deal with in the past six months; the numbness of the initial diagnosis, the loss of a breast, chemo, the weight gain, the procedures, the psychological mind games, etc. but I still have a smile on my face every day and I have humour to thank for that. I was told last week that I should go on the road with my 'shtick' but I don't know how funny people think it would be. As I said, those around me can laugh because they know me and know that I like being the funny one, I wouldn't be me if I didn't crack a joke about having explosive diarrhea during chemo. I make jokes about having one breast all the time; is a mastectomy funny? Absolutely not, not even one bit but I almost feel like by laughing at it, cancer has lost and I have won. Even taking my breast can't keep me from being me. Cancer may have mutilated my body but nothing can touch my spirit.

I used to use 'the cancer card' to get out of doing house work etc. but that got old fast. I saw it as a way to benefit from a shitty situation; if I have to deal with this garbage disease then I should be able to get out of making dinner every once in a while. If I try it now Keith reminds me that I am now cancer-free so the 'cancer card' is no longer accepted.

I've said it so many times; if 1in 3 people are going to have some form of cancer in their lives and we continue to be so awkward about it, how is anyone going to learn about it. Maybe using humour could help teach people a few things. I'm trying to make a point that I had cancer and it can't stop me from being who I am. But, I want to make a few things clear. First, I have found humour has made MY situation easier to deal with. If I had a different form of cancer or had a different prognosis, I have no idea how I would react to it. I would hope I would still be able to laugh at myself but I have no idea how I would react. At the same time, a year ago, I wouldn't have thought that I would be able to laugh during my current diagnosis, so you never know.

The way I look at it is, being diagnosed with cancer has just provided me with more material. Comedian, I am not but I think humour makes people feel comfortable and I think it makes me feel comfortable so I have used it in the past six months to help cope with my diagnosis. That's not to say that there haven't been tears or times of sadness but for me, if I have to go down this shitty road known as breast cancer, why not try to laugh the majority of the time?

It's all the way you approach life, right? When someone says "You're so young to have had breast cancer" I just tell them that I'm an overachiever; I've accomplished what very few other women in their 20s are able to achieve...

Tuesday, October 11, 2011


This October has a whole new meaning for me. October, as many of you know is Breast Cancer Awareness Month and up until 2011, it has had much less of an impact on me. I have always been a fan of pink but I am certainly more conscious of it now. Wearing my pink wig to chemo meant I was a supporter of all women (and men) going through breast cancer but it also represented me kicking cancer's ass. Now, when I see someone wearing a pink ribbon, I feel supported or feel like I have some connection with that person because he or she has felt the effects, whether it was directly or indirectly, of breast cancer.

What actually is breast cancer awareness? Does wearing a pink ribbon signify that you are actually aware? What do people mean when they say they are promoting awareness? Does being aware of the disease provide you with the knowledge to arm yourself against breast cancer? Do you know how to give yourself a self-examination and if you found a lump would you know what to do? Awareness is more than the colour pink and buying something like mushrooms that have pink ribbon packaging doesn't make me aware. Does buying items that support breast cancer organizations who provide awareness programs, funding, and outreach initiatives make the consumer aware?

There is talk about reclaiming October; so many people on social networks are outraged by 'Pinktober' because it overshadows the other awareness months. How many people knew that September was Ovarian Awareness Month?, probably not that many. In October, the whole world seems to turn pink; NFL players wear pink, 'breast cancer' is plastered everywhere and grocery stores start selling things like fruit trays in the form of pink ribbons (not joking, saw it with my own two eyes last week). Now, I've always been one to be conscious, even prior to my diagnosis, not to buy something based on a product stating they 'support cancer research/funding/awareness'. My 6 year old nephew supports all those things, it doesn't mean he donates any money to them. Just because a product supports a program or charity doesn't mean that by buying that product, any money is going to be donated to the cause. There is also sometimes a limit. So, a company can say "$1 from the purchase of every (insert product here) will go towards (insert group here)', however it can say in fine print "up until $10000 is reached" but they continue to sell the product with the pink ribbon and get 100% of the profit because their maximum has been reached.

Take the fruit tray for example, there was nothing different about the pink ribbon fruit tray compared to the yellow round fruit tray beside it but the company who makes them are going to sell more pink ribbon fruit trays because of what it represents. Is that smart on their part? Absolutely! Is it right? Maybe not. Breast cancer sells and companies know that. And, who could possibly look down on a company for supporting the pink ribbon? Right? Again, maybe not! I think a lot of the argument is, if you want to support breast cancer research, why not donate directly to it? Why buy a product that is going to donate $0.50 to a charity (the specific product that I am thinking of supports an American charity which is fine except I am going to benefit more from research and studies done in Canada) instead of donating $5 to the charity of your choice? Or instead, get involved yourself. You don't have to have had cancer to be a volunteer for a cancer organization. This way you know 100% of your support is going towards the cause not into a company's pocket. There's a belief that activism was replaced by consumerism and it's money that 'they're' after not awareness.

In my case, I felt like I wasn't aware. I am a well educated girl but I assumed that breast cancer didn't happen to women in their 20s. After I was diagnosed, I thought I was going to be in textbooks and world record books for being the youngest person diagnosed. Then, I find out that I am far from alone. I don't think awareness among young women is properly funded or supported. It wasn't easy for me to find any information about women in their 20s getting breast cancer and quite frankly all I heard was "26? You're so young to get breast cancer." You're telling me! Now walking the line between needing more funding for awareness among young women and needing funding for women like me who have been diagnosed, I don't know the appropriate division of funds.

There was a recent magazine article that stated that less than 40% of all money raised goes to actual research. I see that this stat can be bothersome however, with no money raised, no money goes towards research and charities can't run themselves. I don't have a huge problem with this because without the charity, group, etc. there would be no money donated. This is assuming that there isn't a frivolous amount going to overhead and that no one is becoming a millionaire while posing as an activist for the cause. Volunteers do a lot but there are still employees, costs for programs, events, bills for the headquarters (rent, etc.) so I think it's a little naive to assume that all money raised will go directly towards research. Research saved me from a second surgery a week before my surgery date so I realize the importance of it but without money going to support the financial needs of the organization there would be no organization to support any research. Maybe it should be made public where the funding goes and the break-down of the allocation of all the money raised, that way someone could make an informed decision of if they want to donate and to whom they want to make the donation.

Some think that the pink ribbon has taken away from the severity of it all, that being represented by a cute little, pink, perfect ribbon doesn't represent breast cancer properly or the way it should. Wrapping breast cancer up in a pink ribbon can give the impression that it's not as severe as other cancers. Breast cancer isn't always curable, many people die from it and have people forgotten that is it cancer? What about metastatic breast cancer? I've read that as many as 1/3 of all breast cancers can become metastatic and if that's the case then why isn't there more funding/focus on it? I didn't even know what that was prior to being diagnosed. If you want to be aware then look it up. Some (maybe even most) 'pink' money is going to awareness but what about the women (and men) who are already diagnosed, how does the money generated from the pink ribbon go to help them? Does the pink ribbon focus on those without breast cancer (awareness, early detection, screening, prevention) rather than those who have been diagnosed?

I've heard the same thing about calling breasts anything other than breasts like boobs, knockers, tatas, (you get the point), by calling breasts 'cute names' it takes away from the severity of breast cancer. I realize I'm a newbie to this whole thing and maybe in 2-5-10 years I will feel a whole lot differently but for right now, I don't care what you call them, if money is raised and it brings awareness to young women then call them whatever you want.

I am trying to present the argument that is out there right now about the pink ribbon but I don't necessarily believe that Breast Cancer Awareness Month represents evil the way some people seem to perceive it. I think there is some truth with being inundated with pink in the month of October and that it makes us a little apathetic and overwhelmed. It's like we are used to it and it gives the illusion of being aware of breast cancer (prevention, screening, symptoms, stats, research, funding, odds, etc.) when really we are just aware that pink signifies breast cancer. I also think that some people put a little too much pressure on the pink ribbon. There is a difference between what it was initially created to do and what it has been manipulated into representing. I have seen some pretty angry individuals who think the pink ribbon should be destroyed and never heard from again but isn't it the message that needs to change not necessarily the medium. It is (one of) the most recognizable symbols for a disease and you want to start all over? I would rather put my energy into making all other coloured ribbons equally as recognizable than starting all over with the most popular.

Again, I am new to breast cancer and the pink ribbon has a whole new significance to me but the way I see it; we need to educate the general public about the consumerism of the pink ribbon, the importance of knowing how your donation is being allocated and the true meaning of awareness.

Monday, October 3, 2011

I Just Have Cancer

Last night, I was cooking with garlic and the smell took me back to my second year of university (you know how a scent can take you away to a memory and it's like you're living in that moment for just a few seconds?). It was a great year full of parties, drinking, balancing a job with school, self awareness and 2 breasts. I swear, I was in that moment for 3 seconds last night and it felt amazing. Unfortunately when I came back to reality, I came back to cancer.

Friday would have been a chemo day but like I said on my facebook 'I don't do that anymore, I quit cold turkey.' I've spent this past week looking back at the past 6 months, what I've accomplished, how I approached things, etc. I wanted to write a little bit about the beginning of my diagnosis. I was diagnosed in March and started writing in June so I wanted to go back to the start of my journey.

I remember the day of diagnosis; I haven't really talked about it because it seemed like the one thing I couldn't talk about. I kind of felt embarrassed, because it was like I thought I had some control over what the doctor was going to say and 'cancer' was not supposed to be part of her script. Keith and I were supposed to go on the Monday to hear my results from my surgeon but that appointment was cancelled so I had to reschedule with my family doctor for the previous Friday. Keith had to work that day so I called my mom and asked if she could come with me. My mom lives four hours away but the 'what-if' inside me felt like it was necessary to ask her to make the drive. She came up the Thursday night and planned on leaving Saturday morning.

On the Friday morning, I got up and got in the shower. I remember thinking 'it's cancer' but of course all signs pointed to 'no'; my radiologist said she was 99% sure it was nothing, my surgeon said 'don't worry, you don't have cancer', my age, and of course I have no family history of it. I got out of the shower and asked my mom if she thought that a cancer diagnosis was karma's way of 'paying me back' for any pain I'd caused anyone in my 26 years. She said "NO!" in an annoyed 'you don't have cancer and why are you saying things like that' kind of way.

We drove to the appointment. Rihanna's 'What's my name' was playing in the pharmacy on the bottom floor of my doctor's office building. We got on the elevator and I could have thrown up with fear. I was vibrating in my chair in the waiting room. My name was FINALLY called and I walked past the room I normally go into to get my blood pressure taken and asked why I had booked an appointment. That was clue #1, this isn't normal. My mom was trying to talk to me about anything that would take my mind off cancer but I wasn't listening.

The doctor finally came in and started asking how I did with the biopsy knowing that I am petrifed of needles. My answers were really short and I said "I just need to know the results." She said "it isn't good, it's breast cancer." You know that feeling when you have just been caught doing something you weren't supposed to, it's like when guilt takes over your whole body and you feel numb, scared, embarrassed, and breathless all at once? It was kind of like that. I wanted to say 'No, No, you've grabbed the wrong file. It's Katherine Evans, E-V-A-N...." but what came out was "Holy shit, I wasn't expecting that." I was kind of mad at myself that I asked my mom to come with me because all I kept thinking was "she doesn't need this right now." Her mouth was wide open in shock and she came over, hugged me and rubbed my back. To be honest, I didn't cry. I think I still thought they had the wrong file.

The doctor told me that I would need surgery, chemo, and radiation. I called the surgeon from the doctor's office to make an appointment. My mom and I walked out of there and once we got to the car, I called Keith. In retrospect, I would have broken the news a little differently but instead, when he said "Hello" I said, "Well, I have cancer". I then called my dad; we were both on our cell phones. It was one of those conversations where there was just enough delay that we kept talking over each other and finally I just blurted out "I have cancer'. I wish I could take that one back. You just never plan on how you're going to tell someone about your cancer diagnosis, and evidently, I could have used a little practice. Needless to say, my mom stayed until the Monday.

Next was the mastectomy. Prior to surgery, I knew what a mastectomy looked like but I guess I just though it would look differently on me. And to be honest, I wanted that shit out of my body that I didn't care what they took and what was left afterwards. One of my friends said "I always thought you'd be the last one to get a boob job" - didn't we all? (I had 'huge' boobs prior to surgery).

After surgery, I had an idea of what the future held for me and I could start getting my affairs in order. I called OSAP to let them know that I wasn't working anymore and needed to lower my payment. The guy I was talking to said that because I was on E.I. and therefore still had an income, I would have to continue to make payments. I asked if there was any program set up for people who were sick. He said something about a long term disability program that they had in place and I remember saying 'I'm not disabled, I just have cancer'. After I said it, I thought 'just have cancer?' people 'just have colds' but no one 'just has cancer'.

Up until my last chemo, I had the mentality that I did 'just have cancer' and that allowed me to deal with the day to day issues and not the severity of it all. I was so focused on getting through each day without throwing up, or focusing on going farther than the mailbox to satisfy my 'leaving the house mission', and not focusing on what cancer was capable of. When I said the words "I have cancer" it felt like I was lying. It felt like I was telling the story of someone I knew or a dream I had. 'Cancer' no longer means the division of rogue cells once you're diagnosed with it, it takes on a meaning that far exceeds the medical one and to this day, I still find it hard to think about the day I was diagnosis. It was the day everything changed, the day my body betrayed me, the day I wasn't invincible anymore.

Here's to Breast Cancer Awareness Month- Check your breasts via self examination, a breast exam from your doctor, or book your mammogram if you're old enough. If you find a lump, don't ignore it, early detection is key.