Beyond the scars

Hey blog! I’m sorry I’ve been neglecting you. I haven’t felt too inspired to write lately. Most of my brain power has been focused on writing cover letters and going on interviews, which is actually quite mentally taxing, although necessary. But writing and talking about job stuff is kind of boring after awhile. I mean, as much as I love writing/talking about what a stellar employee and brilliant human being I am, it can be a bit draining. Sometimes I wish the whole “having cancer” thing could just give me a free pass, and serve as a kind of certificate of excellence – proof that I can “deal with stressful situations” and “overcome challenges.” I mean, any kind of workplace high pressure situation really now pales in comparison to the kind of stress and types of decisions I’ve had to make. Alas, cancer doesn’t get you a free pass, and I’m just the same as all you other cancer-free unemployed suckers out there. C’est la vie.

Other than spending my days in pursuit of the next job, there really isn’t too much else to report. It’s been over a month since my last cancer-related appointment, which I think is the longest I’ve gone since 2012. And I must say, I really am enjoying the break. It’s nice to see things on my calendar like “movie night” or “girls’ brunch” instead of “MRI” or “blood draw.” More and more, I am distancing myself from the cancer community and feeling like it was all some sort of drawn-out, psychotic dream. The potential for a normal existence, at least for the immediate future, really feels like a reality now. I wish I could just completely ignore and forget about it all, but the hot flashes and chest tightness and various other bodily defects stop me from doing so. I am living every day with all of the effects of trying REALLY hard to prevent my cancer from spreading, and although I have zero regrets about any of the choices I have made, it’s still a challenge to live with the many consequences of my so-called “battle.”

There’s an art exhibit in Toronto right now called the SCAR Project. You might have heard of it — photographs of young women with breast cancer, with their chests exposed, scars and all. I’ve seen a lot of press about the exhibit, especially since I’m wrapped up in this “young breast cancer community” so it’s impossible not to be aware of these types of things. The gallery is actually very close to where I live, so I thought of popping by one day while it’s here. It seems like something I should “support” since these are “my people.” Yet there’s also something keeping me away from it. I believe in the importance of these images, especially as contrast to all the “pinkifying” of breast cancer, where all we see is images of women who look healthy, and happy, and whole. Breast cancer, in my humble opinion, is extremely ugly and horrific, and I think we do the “cause” a great injustice when we try to cover that up.

However, right now, I’m kind of in a place where I’m trying to move past the harsh realities of breast cancer. I don’t know if I really need to stare at a bunch of images that remind me of what’s happened to me. I don’t need the reminder or the education — I get it every single time I look in the mirror and see gigantic scars. I am my own “real image” of a young woman with breast cancer. All I have to do is lift my shirt, and there I have it, my very own art exhibit. And for right now, I think that’s enough for me. I commend the women who posed for these photos and truly think they’re brave for doing so. But I think I’ll likely avoid checking out the images in person, at least for the time being. I don’t want to compare my scars to their scars or my reconstruction to theirs. I don’t want to feel any more anger or sadness than I already do about breast cancer and what it has done to me, and continues to do to way too many young women. I guess, in a sense, I’m taking shelter with the exact group that the SCAR Project is trying to oppose – the group that wants to ignore the ugliness of breast cancer and look away and pretend it doesn’t exist.

I guess for now, that’s just where I’m at. I want to pretend it doesn’t exist. I want to live in ignorance, just for a single second. I have spent so much time in the ugly, scary, dark world of breast cancer. I don’t wish to immerse myself in it anymore right now. I want a pretty, fuzzy, pink, happy image. I know it’s not real. I can’t un-know it. I know what lies beneath it all. But sometimes, we all need to allow ourselves to “make-believe” and pretend and imagine that everything is just fine and dandy and perfect and everything will be okay. And who knows. Maybe it will be.

 

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Who am I?

Lately, I’ve been starting to get a bit more of the “old me” back. Little by little, cancer is transforming from the star performer to a backup singer, ever so slowly fading into the background. This is obviously a good thing, and I know it’s what my doctors want me to do: to live my life.

The thing is, as much as it starts to become less of a key player in my life, the cancer is still there (not literally, I hope). I feel its presence and its impact, and I think about it every day. How can I not? Last night as I was squirming in bed, my ribs aching from lying on my implant, and my body dripping sweat from my drug-induced hot flashes, I wasn’t thinking of my to-do list or my summer plans. I was thinking of the stupid cancer that caused these issues and prevents me from sleeping. I am accepting of my reality, but I am still angry that it’s my reality, and that I will always feel the remnants of what cancer left behind.

All of this is causing a bit of an identity crisis, as I try to find my way back to my former reality. Slowly but surely, I am having conversations with people that have nothing to do with cancer (most having to do with television shows… obviously). I’m feeling interested in topics that have nothing to do with cancer. Last year, when cancer was my life 24/7, it was really hard to focus on anything else, or to feel like anything else was really that important. I had a lot of  trouble relating to people’s worries and daily concerns. Everything in my world felt so heavy and serious. But now, it is much less so.

There is the occasional doctor’s appointment, and the occasional pain that brings all the fears rushing back and makes me wonder if the cancer is still growing and traveling somewhere else. But it is no longer at the very front of my mind, at least not always. I am less interested in “cancer talk” and “cancer news” and increasingly more interested in all the things I loved before that I had put aside for a bit: exploring new restaurants, listening to new music, reading a good book, geeking out over new tv season trailers, going to the movies, analyzing the disaster that was The Bachelor finale, spending time with friends (usually while eating and/or watching TV… I’m starting to see a common theme here). All that good stuff. It feels great to find my way back to these things and to find joy in many of the same things I used to.

But then the “cancer side” pulls me back in, and I do feel this odd split in my personality, this feeling that I don’t exactly know how to define who I am anymore. Yes, I’ve heard about whatever pop culture thing people are tweeting about on most given days and yes, just like you, I’m annoyed with Rob Ford and annoyed with the shitty weather and complaining about all the same dumb crap most people are. But then I hear about another young cancer patient who died, or I see a link to a new study about breast cancer outcomes, or I get an email from someone newly diagnosed who wants my advice. And I’m pulled right back into that world, and it still feels very familiar, and somewhat natural. There is still that need to connect with people and reach out to people in the same boat, regardless if we have anything else in common — cancer is what connects us, and that’s all that’s needed, because it is such a huge, fundamental part of my history. And if I’m really being honest, it is still a dominant force in my present, and likely in my future.

As much as I adjust to my new reality and try to get things back to how they once were, there is no denying it — I am forever changed, and I view the world through a very different lens.

So, who am I?* I don’t really think it can be summed up in one clean definition. I am a 29 year-old woman. I’m a wife. I’m a daughter and sister and friend. I’m creative. I’m intelligent. I’m (sometimes) funny. I’m compassionate and loyal. I’m a writer. I’m a film/tv person. And one time, I also had cancer.

I guess that will have to do for now.

*After writing “who am I?” I totally can’t get this out of my head now. Sorry if the same thing happens to you.

Another part of the story

Besides a minor mention here and there, I have never really written about fertility and cancer — specifically, my fertility and my cancer. I’ve had numerous reasons why I didn’t want to write about it: feeling that it was too personal and private, something only to be discussed by me and my husband, or worrying about friends who are moms or soon-to-be-moms feeling they can’t talk about anything baby-related in front of me. But I’ve come to realize that by not writing about it, it sometimes puts me in uncomfortable or awkward situations, which other people likely aren’t even aware of. And why should they be? I don’t talk about it, so their ignorance is really my own doing. I also know that a lot of people read my blog as a way to educate themselves about how it feels to have cancer, especially as a young person, and by not broaching the very important issue of cancer and fertility, I’m not doing a really great job as cancer teacher.

So, here we are. And I am ready to talk about it. Or at least, some of it.

When I was first diagnosed with breast cancer at the age of 28, one of the first things my doctor told me was that she wanted me to see a fertility specialist immediately, since certain cancer treatments can have a negative effect on one’s fertility. This is one of the very major issues facing young adult cancer patients, and unfortunately, it is often overlooked. I have heard countless stories of young men and women who were thrust into cancer treatment, without their fertility being discussed. This is a huge problem, and one I think all young people and all doctors should be aware of. So in that regard, I was very fortunate that both my family doctor and oncologist had discussions with me about how my treatment might impact the potential for me to have children.

Learning that my ability to have children might be compromised on the same day as learning that I had cancer was a major double whammy. It was a tough pill to swallow, when I was already considering the possibility that I might not even live long enough to start a family in the first place. Most people who get cancer are quite a bit older, and don’t have to deal with such things. But unfortunately for me, and for my husband, we had to deal with it, and fast.

The same week that I was meeting with breast surgeons, trying to decide if I should remove one breast or two, I was also meeting with a fertility specialist to discuss my options. To say I was a bit overwhelmed would be a wild understatement. I had tons of information coming at me from every angle, and very little time to make decisions that would greatly affect my future. It was kind of a shitty week, you might say.

The fertility specialist did various tests and exams, where my husband and I learned that, yep, we were indeed fertile. Yippee. Too bad I was about to shoot my body full of drugs that could potentially ruin all that.

There are specific chemotherapy drugs that are known to have a damaging effect on fertility. Unfortunately, I had to get one of them. This was not an option. You can’t get pregnant if you’re not alive (lesson of the day!), so staying alive was my first priority, above and beyond everything else. And sadly, in the world of cancer, the best proven method of doing this is often by poisoning yourself.

We were given the option of retrieving embryos, which we could then “store” for  the future, if needed. At first, this seemed like a good solution. An insurance policy, in case the worst case scenario became a reality. (A very, very expensive insurance policy, mind you, as these procedures aren’t covered in Ontario for cancer patients.) With barely any time to think about it, it seemed like the smart thing to do. I got a bunch of prescriptions for shots I would need to give myself and a million consent forms that needed to be signed, and we were off to the races. At least, that was the initial plan.

As I began doing more research about the hormones I would have to take, despite some limited studies showing it was safe, I started to feel uncomfortable by the idea of messing with my hormones, especially when I have a hormone-sensitive type of cancer. It felt risky, especially when knowing that a) we might not even need the embryos and b) if we did need them, there’s not even any guarantee that the procedure would work. In many cases, it doesn’t.

I was also presented with the option of joining a clinical trial, where I could potentially receive a drug that could benefit me, targeting my specific type of cancer. If I chose to do the fertility preservation, there was a good chance the start of my chemo would have to be pushed, and I might not qualify for the trial.

To top it off, the thought of injecting myself with hormones and dealing with potential side effects from that and having to undergo the egg retrieval, at the same time as being in tremendous pain from my double mastectomy with immediate reconstruction and gearing up to start chemo… well, it became less and less appealing.

One night, I was filling out the form where we had to decide what to do with the embryos if we ended up not needing them. Would we donate them to another couple? Give them to research? Have them destroyed?

Suddenly, it all just felt like too much. It felt like I was doing what I thought I should do, rather than what my gut was really telling me to do.

After expressing my concerns to my husband, he admitted to having the same concerns too. We discussed it some more, and then came to our final decision that we were going to put the brakes on the preservation process, and have faith that things would work out for us. Dealing with the cancer felt like more than enough for us to have on our plate at that time. So with that, we put 100% of our focus into making me healthy. I joined the trial, began my treatment, and tried to push thoughts of babies and pregnancy far out of my mind.

None of this has been easy. I remember being so angry that I had to make such hideous choices. I shed a lot of tears, cursing cancer for destroying my dreams. I have wanted to have children since I was a child myself. Anyone who knows me knows this fact about me. We had hoped to have a mini S or mini J pretty much… right now. But cancer decided to show up and derailed the plans and the future we had envisioned for ourselves. At least for now.

So where does that leave me now? I am not quite sure. It is not really possible to tell what effects the chemo had on my fertility, since I’m taking a drug which messes with my hormones. And, to top it all off, I am not allowed to be pregnant while taking said drug… which I am supposed to be taking for a minimum of 5 years, and possibly 10. Or, I have the (not medically-approved) option of coming off of it early, which there are NO good studies to support, and possibly increase my risk of having the cancer come back and not surviving. So my big decisions are not over. Not even close.

It is hard seeing people around me getting pregnant and having their babies turn into toddlers. It is hard seeing photos posted at every hour of the day. I’m fairly certain anyone who has wrestled with any type of fertility issues can relate on that one. We live in a very baby-centric world, especially when you are my age. It ain’t easy. (Although I make myself feel better constantly by thinking of the vacations and nights out my husband and I can take whenever we please, and our ability to sleep in on the weekends as late as we wish. We often say “If we had a kid right now, we couldn’t be doing x,y, or z.” It makes me feel better… for a moment, at least.) If anything, this whole ordeal has made me much more sensitive and empathetic toward couples who are experiencing infertility problems.

I do have a lot of hope for our future, and our family. I know, regardless of fertility issues, there are options. I like to think that all of this sad stuff will eventually lead to somewhere happy. I need that hope, and I hang on to it.