Wednesday, October 31, 2012

My Eggplant Expander

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

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

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

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

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

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

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

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

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

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

Wednesday, October 24, 2012

Talkin' Breast Cancer with an Old Lady

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

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

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

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

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

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

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

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

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

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

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

Wednesday, October 17, 2012

Lost in Translation

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

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

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

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

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

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

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

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

Thursday, October 11, 2012

A Modern Day Love Story

When I was a kid, I thought about my Prince Charming, the perfect man, who always knew what to say, took care of my every need, and no matter how fat I was, never said that I looked fat in anything. When I was a kid, things were easy, I would finish school, go to university, be rich by twenty five years old, have two kids and be married by the time I was thirty. When I was a kid, I had it planned, and the possibility of not achieving any of this never crossed my mind.
When I was in high school, I never really had a boyfriend. I like to pretend that it was because they were all too immature but I think it’s safe to say that the size of my hips scared most of them away. At the ripe old age of 18, I wasn’t sure if love was ever going to happen for me.
I considered myself someone who hadn't faced much adversity in my life. I mean, I have always struggled with my weight and I had arthritis by the time I was sixteen but everyone has something, right? When my aunt died of pancreatic cancer, I started looking at life a little differently. Why her? Why so young? Why cancer?
Fast forward about six years and after I had come to terms with my aunt's death, as I ploughed through university my childhood dreams slipped away. After 20 years of marriage, my parents split up shattering much of what I believed in, instead of being rich, I was borrowing more and more money from the government to sustain my six years at university, kids were nowhere in sight and I had just broken up with who I had considered to be my soul mate. Boy, did I miss being six years old and seeing the world with rose coloured glasses. 
So as I entered my fourth year of university, I was determined to get through the year and graduate. In the mean time, I got to know Keith. I mean I had known him for five years at this point but I knew him as my brothers’ friend. We started hanging out and once he started making the four hour drive to Ottawa to see me on weekends, I knew we were becoming more than friends. Near the end of my first semester of my last year, we made it official.
One year turned into two and between going back to university for two more degrees and working at a pretty steady pace, Keith packed up all of his life and moved it to Ottawa to be with me. After a few more years, it started to become apparent that Prince Charming doesn’t exist. Hahaha, just kidding Babe! But seriously, what I started to realize is that Keith and I work very hard (as a team) to make our relationship work. There is no secret, and we aren't perfect but damn we make a good pair.
I graduated in 2009 and Keith and I took a six week trip to Europe. When we came back, I got a decent job, as did Keith and things were starting to fall into place. After the split of my parents, I didn't know if I was prepared to get married but Keith and I were discussing starting a family, certainly not right away, but within a couple of years. Then right in the middle of careers and baby came cancer. 
The morning of my diagnosis, my mom came with me to the appointment and although we were convinced that it was nothing, I didn't want to go alone in case it was something. I called Keith at work and said 'I have cancer.' There are no words for the feeling that I had at that moment. What I wanted to say was 'I have cancer but I promise I'll do my best not to die, okay?' and although I wanted to be strong for him (knowing how scared he must have been to hear me say those words) I needed him to be strong for me.
As time moved on, we were able to joke about cancer. I still insist that everyone should have a 20% off everything card while in treatment (including big purchases like cars, houses, and student loans). A week after my diagnosis, I came home to a gift on the kitchen table. I opened it to find a journal inside and a card that said 'for everything you can't tell me.' 
As one appointment turned into twenty, Keith was by my side for everything and as my needle phobia only worsened, his protective hugs and his tear wiping abilities only got stronger. He walked me to the washroom when I could barely walk myself there after surgery, he emptied my drain because I couldn't do it myself, he would shower with me just so I wouldn't have to accept my mastectomy by touching it and to be honest, he even dressed me for a couple of weeks.
After surgery was chemo and although I was bald with only one breast and packing on the steroid pounds, I never questioned his love for me once. After chemo #3, I hadn't left the house in six days. After responding 'no' to the daily 'are we going to leave the house today' question, on day six he told me that it was time to leave the house. I told him that I wasn't feeling well and he said 'Sweetie, you have to try.' It took about a half an hour to get dressed (between the nausea and the fatigue) but I did it. I walked to the end of the hallway, took the elevator downstairs and went outside. I made it about nine steps into the parking lot and said 'I'm going to throw up' and he quickly said 'Ok, let's turn around.' I got back into bed and Keith said 'I'm proud of you for trying.' The next day I walked for about fifteen minutes and the next even longer. Without Keith, I would still be in bed.
I have heard of too many women who deal with breast cancer alone or whose partners throw themselves into work or turn to alcohol to cope. Keith heard the diagnosis and instantly treated my cancer as our cancer. I never had a choice in having cancer, I knew what my fate was, but he did. Keith could have left, he had the choice and he chose to stay.
Chemo ended but the fatigue didn't. I spent a lot of time sleeping for the months after chemo and again, some days I didn't leave the house.  Keith never made me feel guilty or pressured me to 'get more done' or to go back to work. A week after chemo ended, I posted a blog called 'My New Normal' and this is the one and only comment that Keith has ever written on my blog;

I have tried to tell you all the positive “comments” in person about your blog. I didn’t want to have it become about us, as much as it should be about you. You deserve your own place to write about all the feelings you have, (which are a lot) and as we all know, you react well to a reward system.
You are an amazing woman. It’s no suprise you have so much support and love surrounding you, seeing as that you can brighten anyone’s day just by being yourself. You have taken over not only my friends, but my family with your charm. I can’t tell you how many times I will tell friends or family, “yes, I will be there” and the first words out of their mouths are “is Katie coming?”. I used to be popular, but now I’m just the guy who brings Katie.
I sincerely believe you have found your true calling through this awful experience, and will take the education and passion you have for teaching and use it to change peoples’ lives. You have the gift of being able to express an idea to someone in a way they can comprehend, without coming across as superior or pretentious. Your amazing sense of humour and quick wit can pull people out of their shell and help them open up to you and your ideas.
There are great things in store for you my sweet, and this is only the beginning.
Love Keith

I'm not trying to pretend that at 28 years old or after six years of a relationship that we've got it figured out. I somewhat think that the idea of a 'soulmate' takes away from a relationship. It gives us the idea that once you find that one person in the world that you are destined to be with, everything will work itself out, that there is no work involved and that you don't have to try, and until you find that person, it is you that is doing something wrong by looking in the wrong places. I don't believe in soul mates, I believe in working hard, giving and taking, being on the same team, and communication.
In May, we were at a cancer retreat and at the end of the weekend, one of the cancer survivors came over to Keith and I and said 'Do you guys always laugh this much?' and together we said 'Yes.' We just get each other. Keith still makes me laugh harder than anyone else and what I'm most proud of is that I can make him laugh just as hard. I can safely say that I still have a crush on my boyfriend after six years.

To Keith,
I'm proud to be yours and to call you mine
Thank you for caring enough to stay.

Wednesday, October 3, 2012

Singing in the Rain

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

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

It felt so good to walk, and although not every day is an active one, I am really trying to get in thirty minutes of walking a day. I chose not to bring an umbrella mostly because I didn’t want to carry it and lets be honest, my hands needed to be free for my dance moves. Yes, I got some looks and I was wet (like really wet) by the time I got home but I felt good. I was singing in the rain, dancing in the rain, and mostly, I was kicking ass in the rain.
It’s so easy to feel sorry for myself. It’s so easy to focus on cancer. It’s so easy to feel like a victim. And some days, I do feel all of these things but I really try to look at the positive side. Nothing can change the fact that I had cancer, nothing can change the fact that it took my breast and that I will never have my nipple back but I am trying my best to make sure that that's all cancer takes from me.

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

I had someone (who I only met a few months ago) say to me the other day ‘I had no idea that you had cancer. You’re just so happy all of the time.’ She wasn't trying to imply that if you've had cancer, you need to be miserable - her point was that if SHE had cancer, she would be miserable. She’s right in some respect, I do have a lot to be upset about but I keep coming back to; what good is that going to do? Some days are easier than others but through the tears are always smiles because to be quite honest, it's cost me less energy to laugh than to cry and if anything, I am doing my best to conserve my energy.
I think it was this walk that felt so good because I realized how empowered I was as a survivor. A year ago, I was stuck inside in a chemo haze, feeling like garbage, dreaming about going for a walk - this year I'm walking! I don’t want to let cancer have a hold on the rest of my life the way that it once did. Not being a patient anymore and having transitioned to a survivor comes with some empowerment and as I think about the days during treatment when walking to the washroom was a challenge, I refuse to let the memory of treatment affect my present. I am so grateful to have my health back and I feel like I should be celebrating it by not taking it for granted.