Wednesday, November 21, 2012

Surviving Survivorship Part Deux

I have heard people call cancer 'a gift'. I'm not even kidding, some people refer to cancer as a gift. I think of a gift as something that I would not only like to receive but also something that I would like to give to my family and friends and I can safely say that cancer therefore doesn't qualify. The idea behind the concept is that once someone has had cancer, she develops a new perspective on life, she makes lifelong friends through the experience, she doesn't take life for granted, she lives in the present and doesn't worry about the future, et cetera, et cetera, et cetera. And, I will admit that cancer has been a great teacher and that I have learned life lessons in my twenties that I would have otherwise not learned until my fifties or sixties however I will never refer to cancer as a gift.

Most of the time, I am able to focus on what I have learned from cancer and live life accordingly but every now and again the thought of not making it to thirty because of a cancer sequel creeps into my mind. To be honest, the farther away treatment gets, the less and less I think about it coming back. Don't get me wrong, it's still a daily thought process but it isn't an hourly one anymore and I'm hoping in another few years, it is more like a weekly thing instead of a daily thing. I try not to focus on it because it's not like if I worry about it every day that I will be more prepared for the doctor to say it's back. This is the best way I know how to describe it; once you're diagnosed with cancer it is terrifying not knowing what is coming your way and how you will be affected by all of the poking, the prodding, the surgeries, the appointments, the mental game and everything in between. But, once you've had cancer, once chemotherapy isn't just a word, it's instead a past experience, being diagnosed for a second time means you know exactly what to expect and nothing terrifies me more. Recently, I saw an interview with Michael J. Fox and he said 'If you imagine the worst case scenario and then it actually happens, you've just experienced it twice.' Isn't that the truth?

I don't think survivorship is only about the fear of recurrence though either. I have some pretty hefty body image issues now. Seriously, I joke all the time about not having a breast because it's how I deal with it but to be totally honest, it f*cking sucks. It makes my heart hurt to think that the only way that I could stay alive was to chop off my breast. And I know that many people say things like 'Well, at least it was your breast and not your [insert other body part here]' but I miss her. I miss feeling like a woman or even feeling attractive. My breasts certainly didn't define who I was as a woman but they certainly were part of my womanhood, the same way that being a mother is for other woman (oh wait, cancer may have taken that from me too).

When I pass a mirror anymore, I don't look at my make-up or my hair (really, there's no controlling it) but instead I make sure that my 'boobs' (and I use that word loosely) are straight and I make sure that there is no way to tell which one is real and which one is manufactured in the same factory as stuffed teddy bears and pillows. And my hair, well, I've just given up on it. I don't look like Orphan Annie anymore but it is an interesting look. I try not to worry about it but to be honest I miss my hair. So many people would very easily say 'There is so much more to worry about in the world' and to be honest, I miss my breast more but I think we underestimate the trauma of losing our hair. At the time of treatment, it didn't bother me and even being bald for so many months really didn't phase me but it is now that I am trying to grow it back that I find the injustice of the hair loss of chemo (ugh, especially the thought of having to go through treatment again and losing it all over again).

I think cancer also presents this void in your life once you've finished treatment. I feel as though everyone around me took a huge sigh of relief when treatment was over and managed to translate the end of treatment as being the end of cancer whereas I seemed to look back at what I had just been through and think 'Holy shit, I just had cancer. Now what?' It was almost like it was just beginning for me while it was just ending for every one else. Although the physical warfare is intense, you know that the nausea will pass and the bone pain will lessen but the emotional stuff, it gets suppressed until after treatment. While you're in the thick of things, it's almost like you don't have time, patience, or strength to deal with the emotions that come with a cancer diagnosis and it's not until after treatment, once you stop living day by day (or minute by minute during the bad days), that you start dealing with your diagnosis.

As my physical strength started to return and my hair started to grow back, I stopped looking sick and I was able to go back to work and lead a normal life again except things weren't normal anymore. I don't know how to do anything that I used to do now that I've had cancer. I've used this analogy before but you know how new mothers often explain leaving the hospital with their first child with a lot of anxiety? I have often heard new moms explain it in a way that they are surprised that their medical staff is just going to let them leave with this newborn without a manual and without someone telling them what every coo, and goo goo means. I felt the same way after my mastectomy - 'What do you mean you're just going to let me leave? I don't know how to get through a Tuesday with only one breast. And to be honest, I've never experienced any other day without a breast so you might as well add Wednesday, Thursday, Friday, Saturday, Sunday and Monday to that list. And while we're at it, what's the protocol for holidays?' I somewhat still feel that way now. An example would be when I fly, I often think about my prosthesis (what if they pat me down?). Everything has changed but everyone wants me to be the same. Well, it's not happening. Now, I know at this point all my cancer-sisters are nodding their heads and all my never-had-cancer-peeps are thinking, 'Ok, she's lost it! What the hell is she talking about?' and I'll try my best to explain it.

When I was first diagnosed, like within a week of being told the news, my mom and I were out at a housewares store and the sales rep was trying to tell us about the current promotions and all I kept thinking was 'I have cancer. I have cancer. I have cancer.' Intermittently, my thoughts were interrupted with '50% when you buy the salt andpepper shaker' and 'Buy one get the second for free' but primarily I was focused on cancer. I certainly don't think like that anymore but I still do have a lot of thoughts go through my head that would have otherwise freed up the space to let me dream of my life without cancer. At the same time, although the 'I have cancer. I have cancer.' thought doesn't go through my mind during every waking minute, sometimes I do feel like I am lying or omitting information when someone like a cashier asks 'Would you like to donate a dollar to [insert cancer charity here]'). In this weird way, I feel like I should tell her that I had cancer myself. I think it's because even though you can't tell by looking at me, I still feel like I am in the thick of things and I think in a way that I am; the cancer just moved from my breast to my mind. I still think about it, it's just not in as much of an intense way; now when I think about not having a breast, it isn't traumatic, it's not as fresh and instead it's just sad (and yet normal).

Tomorrow I have a doctor's appointment. It's just a consultation for my future reconstruction but I always fear the look of 'Something's not right' on the doctor's face. I don't know if that fear will ever go away. I just had no concept that even in remission and even after being told that I am cancer free one day, that I will have cancer for my entire lifetime and without writing about it, others won't understand it either.

10 comments:

  1. When I hear the cancer as a gift idea, I always remember that in German "gift" means poison.

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    1. Uh, how did I not know that??? That is my new response to when people say cancer is a gift.

      Thank you!

      Katie

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  2. oh Katie, you describe this so well. Cancer is neither a gift nor a welcome teacher. Sometimes, based on the way the world has responded to me, I think I have myself convinced that cancer never happened/is happening/will happen again. I cannot imagine it barging in on me before I turned 30. I imagine I would have needed a resource like your blog, so keep writing.

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    1. I certainly know what you mean by feeling like cancer never happened. I feel like that a lot.

      Thank you for the kind words. I really appreciate you connecting with me.

      Katie.

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  3. another one nodding over here!

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    1. Ciel I can always count on you to have my back.

      Thanks for the 'me too'.

      Katie

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  4. Im right here with ya Katie! Cancer is so not over after treatment.

    I too did that whole "I have cancer." thing in my head the first month after diagnosis. It was something Id randomly just want to say out loud too in public. I actually did once to someone in a Home Depot. It was awkward. But I didnt care. lol.

    Thanks for writing about issues we face... it helps validate feelings all of us are having.

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    1. Thank you so much Ashley. I so appreciate you taking the time to make me feel less alone!

      Katie

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  5. Katie,
    I have to tell you that I appreciate your blog so much. I was diagnosed with AML (leukemia) last year and had a bone marrow transplant 16 months ago. I know we had different cancers, but I find myself forwarding your blog to my mom and sister every time I read it and saying, "This is what I feel like, even though I don't know how to put it to words!" So keep doing what you're doing..it helps! Thanks :)
    ~Jodi

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    1. Well, Jodi, thank YOU for your message. I have to tell you that you had me choked up with your message. I really appreciate that you took the time to leave this beautiful message and for being able to relate to my feelings even with a different cancer.

      Thanks for connecting!

      Katie

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