Monday, November 28, 2011

My Cancer-Free Weekend

Last weekend was by far one of the best weekends of my life. Friday, I got to Toronto and was lucky enough to attend a film festival devoted to breast cancer ( Friday night, a number of us had dinner together. Across the table from me, one woman was introducing herself to one of my friends and she turned to me and said "Hi, I'm Terri". I think my response was something like "Uh, I'm Katie" like she should know who I am, like "THE Katie". Anyway, it was fellow-blogger Terri from afreshchapter. Terri who, when everyone else was saying "Yeah, you're half way through" after my third chemo, said "I won’t sit here and say, you’re halfway through (insert peppy look and cheerleader first pump), instead I will say, ugh…you’re half way through." Terri is pretty much awesome, both online and in person.

From dinner, we headed to the ROM, met up with Catherine (Bumpyboobs) and watched a screening of 'Baring it All' which is a documentary about 'The Scar Project'. What an incredible film and quite the amazing photography exhibition (having seen it via the film). One of the women from the film was in the audience and was part of the Q&A afterwards along with her husband, the director and the photographer. She was my age when she was diagnosed and I think we had the same stage of cancer as well. We had similar treatment and her husband reminded me a bit of Keith. Needless to say, I related to this woman very easily. Near the end of the film, she explained that after breaking her finger, and going to the hospital to get it looked at, tests showed that her cancer (that she thought was gone) had moved into her bones and she now had stage 4 cancer. The girl that I related to the most, the girl who had a similar diagnosis to mine now has stage 4 cancer. I didn't fight any harder than she did, and my treatment was the same as hers so who's to say that it's not going to happen to me? Sometimes, it boils down to "it's just not fair". I can be as positive as I want, drink the special wheat-grass cocktails, never smoke, stop drinking, exercise all I want and cancer can come back. I spoke with her at the reception afterwards and thanked her for being a part of the Scar Project and for representing women like me.

The rest of the weekend was spent with other young women who had been 'there' and knew words like 'expander' without having to explain what it was and understood that 'chemo' isn't just a five letter word that means cancer treatment but instead represents the hardest months of my life and without having to utter one word about it, I knew that they knew what it was like. I don't know how many women I spoke to this weekend whose names I never learned because names didn't matter, we were united through our experience. It was so relieving to not see the face of sympathy when I said "I was 26 when I was diagnosed" and instead be met with a "me too." It's amazing that cancer is what connected us all and yet for the first time since I was diagnosed, I felt like I had a cancer-free weekend. I didn't stand out because I had cancer because everyone there had had cancer. I was an individual for other reasons than having breast cancer and it felt amazing.

In the middle of this incredible weekend was the once in a lifetime night; it was the CCTFA's Mirror Ball. I won't go into too much detail as afreshchapter (Terri) and Bumpyboobs (Catherine) have already hit the nail on the head with both of their descriptions, but what a magical night. The three of us were lucky enough to speak during the night's events and like Terri said, during the soup portion of the meal (we were previously told that we were going to speak right after the soup was served), I was pretty nervous.

We were all gathered and brought back stage. I was still nervous but then I thought (and I think verbalized) "If we can get through cancer, we can go out and speak for a few minutes about having it" and seriously, my nerves went away. I led the way onto the stage, was introduced along with the other two, and when the spotlight shone on me and I went for it. There were over 700 people staring back at me, waiting for me to talk about having cancer, and I think I did a pretty good job. It felt natural, and everyone cheered when I said 'I finished chemo 2 months ago and officially kicked cancer's ass' and it felt so good to be on stage with two other women who were there for me during my treatment when it was so difficult to connect with anyone.

A week later, I am still on a high from Saturday night. We had so many people come up to us afterwards and thank us for speaking, and tell us that we're an inspiration. I loved every minute of it. It's almost like cancer has turned me into this warrior that isn't afraid anymore. I'm not afraid of someone commenting of the size of my hips (or ass for that matter) because my message is so much bigger (even though that's hard to believe) than either one of them. I'm not insecure about walking in heels, something I never do, in front of hundreds of people because it's not my walking that should be evaluated, it's my words.

So, the magical night is over and I am back to reality. I made some incredible friends last weekend and although my contact with most of them is restricted to online, knowing that these incredible women exist and that breast cancer at such a young age doesn't have to be so isolating is so empowering.

Back to reality means back to the world of worry, and doctors and day to day issues. Keith and I were decorating our Christmas tree the other night (as a kid, we weren't allowed to put the tree up much before the 20th of December so I am totally rebelling and putting mine up in November now that I'm an adult and I can make grown-up decisions like that). We had the 'Holiday Hits' station playing on the television and as Tony Bennett sang "Have Yourself a Merry Little Christmas" my eyes filled with tears. Back in March, I didn't know if I was going to make it through the summer let alone to Christmas and here I was decorating a Christmas tree. It was such a surreal feeling, like out of a movie. I find out my blood test results and if I have the BRCA gene this week and go for a mammogram next week to identify the lump in my left breast. Regardless of the future test results, I will make it through (probably with some sort of smile on my face too).

Here's to the next 75 Christmases and if you are a young women who was just diagnosed with breast cancer, please reach out to other young women, we are out there and I can now tell you that it is such an incredible feeling to be just one of the girls again instead of the cancer girl.

Friday, November 18, 2011

Cancer's A Real Jerk

Things are going pretty well right now with the exception of being exhausted 100% of the time. My hair is growing back, and I even have a part in it, I would say 'style' but I think that's jumping the gun a little. Chemo seems like a distant memory and I have started to sleep on my stomach again, it is glorious. I guess it's the small victories that I have learned to celebrate.

Although things are falling into place, I still can't get over how much of a jerk cancer really is. My hair will grow out and I will forget the pains of chemo as time passes but I am starting to learn that once you've had cancer, it becomes a part of you, the same way your fingers or nose or knees are a part of you. It doesn't matter what I do, I will always have had cancer. Even though it's been 8 months since I found out and 2 months since chemo ended, I will always have had cancer.

There are so many reminders in one day of my cancer. I tried on a dress the other day that criss-crossed over my chest. In other words, it had a sort of V-neck neck line. Anyway, the sales lady came over to me and told me that all I needed was a good push-up bra. Ha! I would pay good money for a push-up bra if it made me look like I had breasts to be pushing up. I didn't bother telling her that there was nothing there to push up and instead just told her that I didn't like the colour. It's amazing how insecure you can feel in that quick of a moment. It wasn't a big deal, I forgot about it by the time I left the store (dress-less) but it just makes me realize that cancer is going to affect my day to day living for the rest of my life.

Two days prior to trying on the dress, I was looking for a hair clip of sorts. I asked a sales woman if she had what I was looking for and she showed me a headband. I can't wear a headband without looking like a new born baby but I didn't want to tell her that so I told her that I was looking for a hair clip not band. She assured me that I was foolish for trying to get a hair clip to stay in my hair as it was too short. She was really snotty! I didn't tell her that I didn't have a choice in looking like a boy and what she didn't know was that I had a fascinator in my hair the weekend before that stayed in all night. I wanted to say "you know what, when I wear a headband, I look like a new born baby about to get my first professional pictures taken. I have hair for the first time since June so, when I ask for a hair clip, even if I need to use a whole package of bobby pins to keep it attached to my hair, I don't want a headband!" but of course, I said "Ok, thank you very much."

I didn't bother telling either sales woman because it only makes them embarrassed, apologize and leaves us both in an awkward situation. I know this from experience, I have told a sales woman that I had a mastectomy after she told me to wear a different bra to change the look of a shirt that I was trying on and I foolishly told her that no bra would fix what I had going on under the shirt. She felt bad and I felt bad for telling her.

Needless to say, I ended up going with a dress that I already owned and decided to go with a headband that blended in with my hair ('my hair' what beautiful words) and didn't make me look like I was 3 weeks old.

While I'm on the topic of cancer being a jerk, I found another lump in my breast only this time it is in my left breast. Apparently it's from the reconstruction; the tissue hasn't attached itself to the skin and it's nothing to worry about. Will it reattach itself? And is it nothing to worry about? Or is it the same 'nothing' that my first lump was? Is it normal breast tissue or is it righty's cousin back for revenge? I have looked into a prophylactic mastectomy (they go in and shell out the breast tissue and replace it with an implant) but it's not that easy. I have an 80% chance of losing my nipple and there's no guarantee that it will be a one-step reconstruction and instead I might end up needing another expander and that means I would need a third surgery. Finally, it still doesn't 100% protect me from getting breast cancer and in the future, screening tests will have a more difficult time identifying any abnormalities. Oh, and I have an appointment on December 2nd to find out the results of my BRCA test. You think that once you've heard "you have cancer" there will be no more huge surprises but unfortnately, the past 8 months has been packed full of mean surprises; here's hoping on December 2nd I don't find out about another one.

You know how you seem to be able to hire someone to do just about anything anymore? You can hire someone to plan your entire wedding and you can hire someone to help choose something as personal as a baby name for you, well, I want to hire someone who will make all of my cancer-related decisions for me. I'd like to ask that person, assuming he or she 'exists'; What surgeries should I avoid and which ones should I go through and what foods should I avoid eating in order to never have cancer again? And while you're at it, you might at well stick around for the next five years to help with the side effects of Tamoxifen and how to deal with the constant fear of recurrence, oh, and fertility and child bearing, and child rearing and... you know what, can you move in with me and Keith?

Do you know what I actually need? I need that wand that they use in Men in Black to erase people's memory. I need to be flashed by the wand, have my memory erased, and then told some elaborate story about why I'm not working right now, why I'm so exhausted, and where my right breast went and of course, this story cannot include the word 'cancer'. Does anyone know where I can find such a thing? Cancer has controlled the past 8 months, I don't want it to control the next 8 decades.

Tuesday, November 8, 2011

A Thanks to All Caregivers

I am currently in the waiting room of a dentist's office. Keith is getting a root canal (one he's been putting off since the summer). He is in with the dentist while I write this entry. He was pretty scared (he's a root canal first timer and doesn't know what to expect) and I feel so helpless out here just waiting. I started to wonder, if I feel this helpless during a root canal, how helpless must he have felt for the past 8 months?

I talk a lot about there being missing resources for young women with breast cancer; we seem to be forgotten about when it comes to pictures on pamphlets (usually pictures of 50-60 year old women), guidelines for women and breast health (usually they start at 40), and you rarely see mention of fertility or dealing with menopause in your twenties or thirties (thank you chemo). These are all issues that I think need attention (which is why I write about them) but what also needs attention, rather recognition, is caregivers. Excuse the term 'caregivers' as I know some people are offended by the term but for this purpose it is all encompassing.

My primary caregiver was Keith. I have said this before but, I will never be able to properly express my gratitude (which isn't even close to a strong enough word for how I feel) for what he has done for me. Losing a breats at 26 is awful but knowing that you have a man who loved you when you had 2 breasts and is going to love you with one or none is, if nothing else, a relief and a comfort. He has sacrificed his life (social, financial, work, etc.) for me since March. I could have said "I want to fly to the moon because I think it would help relieve some of this pain" and he would have been on the phone with NASA to inquire how to make it possible. I know he felt so helpless from the day of diagnosis but he has done more for me than I ever expected someone could do.

Six days after I was diagnosed, I came home to a gift on our kitchen table. He explained in the card that with everyone around me who loves me, I am not going through this alone. He said that he would always love me and always be there for me. I opened the gift bag and inside was a journal. He said "I want you to write everything that you can't tell me, in this journal and I will never read it." It was exactly what I needed. I have EVERY day from the day of diagnosis accounted for in that journal. I still write in it to this day.

He has listened to me laugh, cry, talk about recurrence, fertility, and the word 'cancer' has been said more in the past 8 months than it should be in a lifetime. Not once has he said "I don't want to do this anymore" or "I need a break". I'm sure he has felt that way once or twice but not once has he conveyed that to me.

Although there is very little out there for women my age (or at my stage of life) with breast cancer, there is even less for caregivers (especially in Keith's situation). I talk a lot about having a great support system but because I wasn't going through it alone, my supporters need support too. When I think about hugging my parents and my mother-in-law goodbye in the registration area of the hospital as Keith and I left to register for my surgery, it brings tears to my eyes. I wish I could go back in time, take 'that' Katie aside and hug her, tell her it was going to be ok, tell her that she will be able to live without a breast, that there are other women out there just like me, and tell her that no one is disputing that cancer is a jerk but in order to beat it, my breast would need to be removed. Once 'that Katie' was okay, I would go over and reassure my parents of the exact same thing.

While I was in surgery, my family was waiting for me, praying for me, and trying to protect me while I was in the OR. I can imagine that they were petrified. I was getting cancer cut out of my body and there was nothing any of us could do about it but wait, and hope all of it was caught. Then, when I was going through chemo, all anyone could do was watch. They could try to make me more comfortable but they couldn't stop the pain, the puking, the mean thoughts in my head or how chemo was affecting my thinking.

Those around me, those who supported me, didn't express their pain, frustration, sadness, etc. that they were feeling because they thought I had enough on my plate. So, who did they tell? Who did they have to turn to? Who would understand how they were feeling? They could lean on each other but sometimes it's nice to talk to someone who is a third party, someone who doesn't need the same support you do, someone to validate your feelings, someone who can be strong for you without you having to reciprocate. I sometimes wonder what I would have done without Keith, my parents, and my in-laws. I think I would still be in my bed, under the sheets, crying. I couldn't have faced those needles alone, I couldn't have survived chemo without Keith, and lets not forget all that he did for me after surgery (emptying my drain, cleaning me, feeding me, helping me clean my incisions, walking me to the bathroom, changing my shirt because I couldn't accept the loss of my breast).

This entry is devoted to caregivers. I was the one who got the cards when I was diagnosed, I was the one who was sent info about support groups, and about peer counselling but what about the people in my life who were experiencing this diagnosis along with me? No one wanted to lean on me because I wasn't strong enough to handle it but they all had their own individual needs to deal with and no where to deal with them. There needs to be greater resources for caregivers because their needs are separate and unique in comparison to the patient's needs. How many 34 year old men know as much about breast cancer as Keith? Not that many but those who do would surely benefit from each other's support.

Here's to my family, my in-laws and to Keith. Thank you for being strong when I was weak, for saying the right things, for making a joke after you've said the wrong things, and for loving me when I wasn't easy to love. Thanks for believing that I could be strong when I knew I couldn't and thanks for continuing to talk about the 'after-cancer' days and reminding me that I am so much more than my cancer. I love you.