Monday, June 27, 2011

Cancer of The Mind

Originally, I had something completely different planned but it didn't feel right. This one is going to be one from the heart. I am not writing it keeping the reader in mind, I'm writing it keeping me in mind...

When I was first diagnosed, I was in disbelief. Cancer is something that happens when you're older, and is really serious and too often fatal. It's impossible that it's what's growing inside of me.

I had a hard time knowing that once 'they' knew it was cancer, they expected me to wait 17 days until they were going to remove it from my body. I realize 2 1/2 weeks is not very long, but when you have cancer growing inside of you, it feels like years. They want this thing to keep growing while I try to continue living a normal life? You know that feeling when someone close to you dies, and you wonder why the world around doesn't acknowledge it or even stop entirely? Like, going through the check-out at the grocery store, you want to ask the cashier 'How can you just stand there and ring through my bananas when my grandfather died today?' Even though it's irrational that the cashier would know, it feels surreal that she doesn't. Well, that's how I felt. I was on auto-pilot and while I was saying "Yes, we need bags, we didn't bring our own", I was actually thinking "I have cancer, I have cancer, I have cancer."

For the 17 days between diagnosis and surgery, there were more laughs than tears, fortunately. I still, to this day, firmly believe that there should be a '20% Off Everything Card' for those with cancer. You need a new car? 20% off for you, you have cancer. Going grocery shopping? Don't forget your 20% Off Everything Card!

Keith (my bf) and I would joke about a pretty girl walking down the street for example, "She's really pretty", I'd say. Then I'd follow it up with, "Ya, but she probably has both boobs; real women only have one." I'm lucky that Keith is a one-boob kinda guy; he keeps me grounded. I feel sad (it feels like guilt but I know it's sadness) that at 34, he is dating someone with one breast and cancer. He didn't sign up for this as much as I didn't but he has the choice to leave and he doesn't. I respect him and love him forever because of that.

The night before surgery, I was a mess. My house was full with my mom and dad, my mother-in-law, and Keith, and one of my brother's and sister-in-law came to town too. It felt like we were celebrating a birthday or a momentous occasion because we were all together but I was too anxious for it to be a good thing. I was so scared and cried while everyone could only watch and try to say positive and calming things. But how do you prepare your 26 year old girlfriend/sister/daughter to have her breast removed? To be honest, I don't remember any one thing standing out from that night, maybe that it was my last night of actual sleep in the past 3 1/2 months.

The surgery went well and I came out of it in great spirits. The pain wasn't too bad but the pressure on my chest was intense. For about a week, Keith had to help me to the washroom and for about 3 weeks he had to help me get dressed. I couldn't look down when he was changing my shirt because I just couldn't accept that I had had a mastectomy. I remember when the bandages came off, I kept my eyes closed, put my shirt back on, and went home. I remember the first day I got dressed by myself, it was tough but I did it and I did it without looking at my chest. It was probably 3 weeks before I seriously acknowledged that I had lost a breast and at least 4 weeks before I could touch it. So many nerve endings are effected that it's still numb.

The next step was surgery #2. They hadn't expected my lymph nodes to be involved but the first of the seven that were removed had microscopic levels of cancer so they wanted to remove my remaining lymph nodes. Current cancer research proved that it would be more detrimental to take them at my age and if there was any cancer left in them, chemo would kill it.

So, that meant no second surgery, so no second recovery, which meant chemo had just been moved up. Chemo is a word that we just throw around now and have unfortunately become desensitized to. You throw it around until you're the one who's about to go through it. It's one of those things that once you've experienced it, you've crossed over to the other side. This may be a weird comparison, but to me it was like losing your virginity - you're either a virgin or you're not; you've either had chemo or you haven't. You can never undo chemo or the side effects.

My first chemo went 'well'. My nausea reached maybe a 2 out of 10 and within a week, I felt good again. I spent the remaining two weeks cleaning the house, running errands, and living my life kind of the way I used to. My 2nd chemo, on the other hand, was awful. I had all the side effects and ended up on an IV drip for 2 days. You know when you don't feel good and when you finally throw up you have some relief? Well my friends, it was nothing like that. It didn't matter how much came up, there was no relief. I would officially like to resign from chemo, please.

What I couldn't be prepared for, that no website or book managed to warn me about, is the mental game of cancer that you start playing the day of your diagnosis. Everything changes. Cancer is something you have for the rest of your life, whether it's in your body or your mind. I've read about women going through severe depression during their cancer diagnosis and treatment. I didn't think I would ever be effected but after the past few weeks, I can understand how easily it could happen.
I was working 45-50 hour weeks prior to my diagnosis and now I'm not working at all. Now, I only set my alarm for doctor's appointments. Personally, I do well with a busy schedule. I liked being a full time student and working 30 hours a week; I work well under pressure. I just don't feel like I am an active participant of society anymore. If anything, I feel like I am a drain on the health care system. I am not looking for support or strength, I have that, I'm just frustrated.

I have thrown myself into scrapbooking. I had planned on scrapbooking for a while but I didn't know what to include and I wanted it to be something I looked back on and smiled at, not something that made me sad. With the recent articles running in the local, provincial, and national papers, I found my focus. I copied and pasted all of the private messages that I received via facebook into a word document and printed off all 15 pages of inspiration and support. I'm going to include pictures from the Relay for Life as well as cards that I've gotten from family and friends. Just like this blog, the scrapbooking gives me a purpose and gives me something to look forward to with an eventual end result.

I'm just trying to find a purpose in life for the time being. That's not to be confused with the meaning of life, I just want to find a reason for living, right now. I feel good about what I have done so far. I honestly do feel like I am making a difference with getting my story out there, but it's not enough. I want to be the reason that someone else isn't as scared of cancer once they've heard they have it. I want to be the reason that someone feels optimistic about the future. I want to be the reason someone found the lump at stage one and not stage four. I want to help! Too many people suffer from this bull shit disease and I want to be the reason for some relief.

Tuesday, June 21, 2011

A Cancer 'How-to'

Having cancer teaches you a lot about people interaction with individuals both with and without cancer. I didn't realize how relatively ignorant I was about cancer and well, about people in general, prior to my diagnosis.

Now, others may be able to relate to this but in no way am I trying to speak for everyone who has cancer. Everyone deals with it differently and so, to be clear, these are my personal accounts of my individual interactions.

Firstly, I want you to know that it's never too late to tell someone who has cancer that you are thinking of them. I just had a friend message me on facebook last week, over 3 months past my date of diagnosis, to tell me she was constantly thinking about me and was proud of me. Not once did I think, 'Gee, why has it taken her so long to say anything?" and instead thought "Well, that was nice, thanks." I am somewhat surprised by some friends who I have not heard from. People who I considered relevant in my life have not even sent me a "How are you?" text. Maybe some people are scared or don't know what to say. That's why I'm writing this; say something, anything, just acknowledge that I'm sick. I've also heard some people say (I was one of these people 6 months ago), "I didn't know what to say so I didn't bring it up" or "I didn't want to remind her of it so I didn't ask." You know what? I don't have the luxury to forget that I have cancer. When in doubt, ask how I am doing. Just knowing that someone is thinking about me or cares how I am doing, gets me through the day sometimes.

Don't feel guilty about talking about yourself. If you've had a bad day, week, or month (depending on the last time we've spoken), share it with me. I have had friends explain a situation in their lives and then follow it up with "not that it compares to what you're dealing with." I'm fully aware that something like losing your keys for a few hours has nothing on cancer but it's still a pain in the ass and I'm sorry you've had to deal with it. Just because I'm sick doesn't mean you're not allowed to have a bad day. Trust me, I talk about cancer a lot, it's kind of a nice break to hear where you ended up finding your keys. On the other hand, I have found myself getting a little annoyed when losing your keys turns out to be the worst thing that has happened to you in the past 3 months...

I feel like I have dealt with this whole garbage cancer 'thing' quite well, if I do say so myself. For some reason, it somewhat aggravates me when someone says, "Well, just stay positive." I want to fire back with "I am!!" because they make it sound so easy. I realize that many times, people just don't know what to say, and no one knows that four other people who I have talked to today have ended the conversation with "Just stay positive." But staying positive while you learn you have cancer, need a part of your womanhood cut off, have to go through 6 chemo treatments, potentially become infertile because of those 6 chemo treatments and worry about cancer coming back in a different form for the rest of your life isn't the easiest thing I've ever done so forgive me if I just nod and smile next time someone tells me to stay positive. I'm currently reading a book called I Am Not My Breast Cancer. A woman who has gone through chemo writes, 'I got tired of people telling me how important it was to be positive. I had to bite my tongue not to say 'You come over and stick your head in my toilet and I'll go over to you house and be positive.''' Once I read that, I stopped feeling guilty and realized that I wasn't the only one who felt that way. It falls under the same category as when someone tells me "Well, it's just hair." Oh yeah? So, you're going to shave your head with me then?

Something else I didn't know was that when your hair falls out due to chemo, it hurts. You know that feeling when you wear a hat all day, or wear your hair up for a long time or when you wake up in the morning and try to brush your hair and it's all folded/slicked to one side and it hurts to move it? Well, when your hair falls out because of chemo, your hair constantly hurts and just touching your head can be painful. I have shockingly, had more than 3 people come up to me and rub my head (kind of a-la-noogie) telling me I look good with a shaved head. I appreciate the compliment, thank you, however don't touch my head, no matter how tempting. My sister-in-law compared it to touching a woman's pregnant belly that you don't know that well. I've never been pregnant but I can imagine that is pretty uncomfortable to have a stranger rub your belly (to my sister-in-law and to every pregnant woman I have done that to, I am sorry, I have learned my lesson).

As my final thought, I want to discuss cancer and dying. I am in disbelief over how many people have said something like "My aunt had cancer, she died three years ago." I am really sorry for your loss, my aunt died of cancer too and that scares the hell out of me. It's petrifying to know that what was growing in my body is the leading cause of death in Canada. I'm sure that I have gone up to someone with cancer and because I didn't know what to say, I tried to relate. However, when that means reminding someone who is fighting cancer that it was the reason for another's death, it just isn't supportive. I love hearing about stories of hope and strength, about determination and will. Those are stories of support and those are stories I can use during my fight. And again, my point is not to offend anyone, but my heart sinks and my eyes often swell every time someone tells me about another life taken by the same disease that is currently in my body.

I have adjusted and rewritten this blog a number of times in fears that I am coming across too negative or that I am offending someone. Knowing that I have so many people behind me means so much and I hope I haven't ranted or rambled and haven't upset or annoyed anyone with my personal observations. Please know that wasn't my intention. The last thing I want to do is bite the hand that feeds me; I don't want to chastise those who have been there from the beginning, I just want to express my reactions to experiences I've had on this journey thus far. I wanted somewhat of a 'how-to' when approaching that friend of yours who has just been diagnosed or running into someone from high school who is going through chemo. Cancer hits 1 in 3 people; 1 in 3. We are still so awkward about it and don't know how to approach the subject and yet so many of us are affected by it. I hope this helps with some of the awkwardness and uncertainty that cancer can bring. I appreciate having this forum to both express what I have learned and to be able to teach (and hopefully not preach) from my experiences.

Tuesday, June 14, 2011

I Can't Wait...

I have to share two important pieces of news before I get into my blog;

I would first like to say that the Relay for Life was incredible. Team Katie raised, now are you ready for this, over $10 000. I am still amazed. The initial goal was $1000 so I would say that we successfully beat our goal by, oh I don't know, 10 times! Fantastic work guys! I am so proud to be the 'Katie' of Team Katie. Thank you for all your hard work! A special thanks goes out to Kristi for
entering the team and being such a fantastic captain.

Secondly, last night I got quite an amazing phone call. It went like this;
Caller: "Hi, can I speak to Katie, please?"
Me: "This is Katie."
Caller: "Hi Katie, this is Dr. Smith (not her real name). I just wanted to say 'thank you' for getting your story out there' (she had seen my picture in the 24hours article yesterday).

Now, like I mention below, I am petrified of needles. After my second ultrasound (my first ultrasound with Dr.Smith, my radiologist), she recommended that I get a biopsy but I started hysterically crying because I knew that many needles were involved. She put me at ease and we rescheduled a follow-up, 3 months later. After my 3rd ultrasound (2nd with Dr.Smith) and mammogram, Dr.Smith told me that they found something on the mammagram that could be the signs of breast cancer and the only way to know for sure was to do a biopsy.

She called me the night before my biopsy just to make sure that I was still coming. I may not have gone back to get the biopsy if I would have had a different radiologist. I don't know how to explain her approach but she was both sweet and expressed the severity of the situation without scaring me away. The most amazing part about Dr.Smith is that the week before my biopsy was her last week before she went on maternity leave and knowing how scared I was, she came back in, while on leave, so that she could be the one to perform the biopsy.

The reason for her call last night was to see how I was feeling physically and doing mentally. Now if that isn't dedication and devotion, I don't know what is. Then, to top it off, she called to thank me? I had sent her a thank you card about 2 months ago because without her 'push' I would probably still have a lump in my breast and be in denial. Thank you Dr.Smith for everything you

Now, on to blog #2...

From as far back as I can remember, I have used the phrase "I can't wait..." on a consistent basis. I can't wait until I'm 4 and go to 'real' school and not pre-school. I can't wait until I'm 13 because I will be considered a teenager and not a kid. I can't wait until I'm 16 and can drive. I can't wait until I'm 18 and considered an adult (and vote, of course). I can't wait until I'm 19 so I can drink (legally) and 21 so I can drink internationally. I can't wait until I'm 25, then my car insurance goes down, I can get into the 25+ clubs downtown and my life will be in order.

At 26 I look back and think, why was I in such a hurry? Now don't get me wrong, I'm not trying to say at the ripe old age of 26, I am wise. I just wish I would have slowed down. Once you hit 25 there are no exciting ages to reach (no offense to anyone over 26). Everyone seems to be scared of 30 and and the thought of 40, well, yikes! Why was I rushing? I loved my childhood and my high school years were great too. It has been very easy to think "I can't wait until 2012", actually, I have said it a few times. I've said that I want to find a fast-forward button and zoom right past this year. I don't want to feel each chemo, the mastectomy was enough, and each doctor's appointment where new results are revealed can easily be skipped (today, I found out that my bone scan was clear; yahoo!).


Early on, my mom came into my bedroom and started to cry (now, if you know my mom, she breaks down at Bell commercials so it wasn't all that out of the ordinary). Regardless, she was crying and said "I just wish you didn't have to go through this." I had to agree with her. I wish I didn't have to go through it either. Cancer sucks! However, what I said to her was, "Mom,
there is a reason that I have to feel all of this. There's a reason that I have breast cancer." Now I may be fooling myself into thinking that because it gives me some hope, faith even, but so far it has worked. I have to feel each painful step of this journey in order to learn from it. And hopefully, I will teach from it. I have learned more in the past 3 months than I have in the past 3 years. I have learned about kindness, selflessness, support systems, pain, compassion, love, fear, and thoughtfulness.

I think it's just easier for me to see the preciousness of life because I've felt my stomach sink after hearing "You have cancer". If anything, instead of my life flashing before me, it was almost the opposite. Everything that I hadn't accomplished seemed to rush through my brain. Babies, a career, a house, a car, a big wedding, etc. etc. etc. all stormed my brain until I couldn't think. I think all I said was "Holy, shit! I wasn't expecting that!"

The girl in the bed next to me at chemo last week wasn't very pleasant. She just stayed silent and didn't speak to her friend that she brought; she just stared out the window. The nurse was saying things like, 'it's a rule that you have to smile' but that only made the frown bigger. At first, all I thought was, 'how can you be so negative?' but it wasn't long until I realized the assumptions that I was making. Maybe she doesn't have the support system I have or maybe she just found out some test results or maybe she hasn't been given many months to live. Then I thought, maybe her dog died this morning. Just because someone has cancer doesn't mean that her life revolves around it. It doesn't mean that when she is having a bad day it has anything to do with cancer, maybe she is just having a bad day. Maybe she got into a fender-bender on the way to the grocery store. Maybe she just woke up on the wrong side of the bed.

I have learned that life is so precious and is taken for granted on a daily basis by all of us. I have realized that I am not invincible and I will not live forever. I have tried to incorporate that into the way I live now. I was in the shower the other day worrying about something (my next needle [I am petrified, like I take 3 Ativan and use Emla cream, to get blood drawn oh, and let's not forget the uncontrollable crying - thank you, mom.], chemo, weight gain, etc.) and thought "you can worry about this and you might get hit by a bus today OR you can deal with it as it comes and try to RELAX." I chose the latter and I was able to survive that day without consuming myself with all the 'what-ifs' of cancer.

I think, with all of the lessons that I am learning, when it comes to this event in my life, I think I CAN wait.

Wednesday, June 8, 2011

We Make Plans & God Laughs

I have spent the last 48 hours contemplating what to write in my first blog. Do I include a little about who I am? Do I explain my cancer journey thus far? Do I jump right in to a topic like being positive or what it feels like to be referred to as an 'inspiration'? Well, I think I will do a little bit of everything.

I was that kid that did everything 'right'. 99% of the time, where I told my parents I was going to be was actually where I was. I put a lot of pressure on myself to do well academically and in doing so I successfully earned three degrees. My life was on track and being in my 20s, I was excited about marriage, babies, and a new career however, cancer had other things planned for me.

I was diagnosed with stage 2 breast cancer. I had a mastectomy 17 days after hearing the diagnosis. I had the choice of a lumpectomy but the tumour was the size of a golf ball so the deformation would have been severe and the odds of the cancer coming back with a lumpectomy was 10-20% versus 5-10% with a mastectomy. I was lucky enough to have an implant (well, an expander to be exact) inserted at the time of my mastectomy. I had a reduction on my other side as well. My boyfriend jokes that he is lucky enough to have 2 sets of boobs while being with one woman.

Since I found out I had cancer 3 months ago, my focus has changed from having a baby in the next 2-3 years to being able to have a baby at all. During the cyclophosphamide part of my chemo cocktail, I give my ovaries a bit of a pep-talk to ward off as many harmful chemicals as possible. Here's hoping it works. And as for marriage, I was actually not planning on getting married any time soon (I've been with the same wonderful man for 5 years) but since my diagnosis, marriage has become very important to me. I heard the saying, 'we make plans and God laughs' the other day and it has never felt more applicable.

I shaved my head on Sunday. I wanted to have some control over losing my hair so after donating as much as I could (about 12 inches) and sporting a short style for a few weeks, I decided to shave it to avoid it coming out in clumps. I wasn't sure how I was going to react but I loved it. I mean, yes, I wish I had hair but I've always wondered what it would be like to have a shaved head and now I know. Once I stood up to look in the mirror, my boyfriend couldn't get me back in the chair to do final touches because I was too busy walking around the kitchen letting the air graze through my scalp. I actually had to wear a hat to bed that night because I was a little too cool.

My friends and family have been unbelievably supportive and I owe a lot of my strength and courage to them. Not a day goes by where I don't receive a card, a text, a fb message, or a phone call from someone asking about how I'm feeling and if they can do anything. Soon after I was diagnosed, my friends entered a team in the Relay for Life in my honour and appropriately called it 'Team Katie.' It is this weekend. They have raised almost $7000 and my mom has raised over $1500 of that $7000. I am so proud of them. I have been surrounded by so much support that it's hard for me not to stay positive. I am really looking forward to seeing everyone and walking the victory lap at the start of the event.

Thank you to everyone who has read this first blog. I'm really excited about this experience and plan to use this tool to both be inspired and doing a little inspiring myself.