My Little Bs Have the Big C

A Breast Cancer Blog For Young Women

Better Luck Next Time

15 Comments

If you couldn’t already tell from previous blog posts, I like to be in control.  Leaving things up to fate is not really my style, although I try it once in a while.  Mostly, I like to make sure I’m taking the steps necessary to ensure I can achieve the outcome I desire.  That’s one of the reasons cancer was so hard for me.  I controlled very little.  I put my fate in the hands of my doctors and nurses and the only control I had was to listen to them or not.  Obey or not.  Keep smiling or not.

So, when I was told about a study that NYU was doing around healthy eating to prevent cancer recurrence, I was interested.  Very interested.  Here was something tangible I could do to possibly decrease my chances for getting cancer again, improve my lifestyle, try out new yummy recipes and maybe shed a few pounds in the process.  The study was not only free, there would be a chef working with us and we would get to eat while we were there.  Sweet!  AND…there would also be some modest compensation which I would use to buy myself something pretty.  I signed up for the study and was randomly placed in a section that would be meeting in the summer.  That worked out perfectly for me and my schedule.

The meetings started in late July on a Wednesday evening.  I don’t know why I was shocked by this but I was by far the youngest person in the room.  This is not a problem for me but it was weird being the only young breast cancer survivor.  On the first day we talked about healthy fruits and vegetables.  I should have known this was going to be a bad experience when the nutritionist asked us to go around the room, give our name and favorite healthy food and most of the people couldn’t think of one.  Really.  Most people passed, scoffing at the idea of a “favorite” healthy food as if the idea was too ridiculous to answer.  You couldn’t stop me from making my list.  Lentils, zucchini, tomatoes, avocado, kale, salmon, quinoa, black beans, carrots, mango….I could go on and on.  They even asked questions like,

Which food has the most healthy nutrients?

A. Potato Chips

B. Apple

C. Sausage

D. Crackers

These weren’t the exact food choices in the question but the ones they listed were just as obvious and stupid.  But still, it was just the first day.  I could forgive a boring and overly simplistic first day for the sake of going over the basics which included….drum roll please….how to ROAST VEGETABLES WITH OLIVE OIL!!!!!!!!!!!!!   Oooooooooo!  Fancy!!!!!  (note my sarcasm here)

The second session was about portion sizes and how to eat a variety of foods for a maximum healthy punch.  Lots of color and texture.  Variety.  Whole wheat pasta is better than white pasta.  A plate with a hamburger and french fries is not as nutritious as lean chicken with roasted veggies and brown rice.  SHUT. THE. FRONT. DOOR!!!!!!  Then the chef started to cook and one of the things she made was quinoa.

“What is quinoa,” one of the ladies asked?  “Yes, what is quinoa?”  “I’ve never heard of quinoa”  And on and on.  I think my jaw hit the floor.  Most of these women had never eaten, never heard of quinoa!!!!  Where have they been?  We don’t live in some rural town that has limited access to a variety of foods (don’t get angry rural town people!  I know you know what quinoa is, I’m just saying this for effect.).  We live in NYC!!!  Even the corner bodegas sell quinoa!!!  Who are you people?

I left the session frustrated, having learned not heck of a lot again.  When were they going to get to the part that pertained to me?  When were we going to start creating a bunch of recipes that we could  use when we got home?

The third week they had a psychologist and two physical therapists.  The goal was to get us to see that we really don’t move very much and that maintaining an active lifestyle is conducive to healthy living.  They made us take a quiz where we could score anywhere from a 5 to 15 (you couldn’t score below 5) and it measured how active we are in our daily lives.  It asked if we take the stairs, have an active job, walk to the store, etc… I scored a 14.  They started telling us that instead of getting our milk delivered, we should walk to the store.  Take the stairs for two flights instead of the elevator.  Walk two to three miles a day.  If we do these things and add in exercise, we will lower our chance of cancer recurrence.

Cue hand raised high in the sky.

“What role does genetics play in this?”

“It can’t really help if you are genetically predisposed.”

They kept talking more.  Cue hand up again.

“Well, what if you do these things already?  What if you have been doing them for years?  What then?  You’re telling me to keep doing what I’m doing!  But here’s the thing.  I got cancer anyway!  I’ve been walking to the store, taking the stairs, roasting my vegetables, eating a balanced diet.  I’m far from perfect but I do all these things.  So, what am I supposed to do NOW?  Why did I get cancer if I’ve been doing everything you’re saying to do to prevent it from coming back?  And do I keep doing what I’ve been doing?  What are you saying?  Better luck next time?”

And I started to cry.  I was so angry.  Furious, in fact.  That they had the nerve to put me in this room for three weeks just to tell me to keep on keepin’ on.  That I’m doing great.  But the thing is, I’m not.  I got cancer.  No amount of broccoli in the world was going to change that.  No amount of stairs, push-ups or quinoa.  I don’t know why I got cancer.  I just did.  Because life sucks sometimes.

But here’s the thing.  I like to be in control.  I want to make sure this never happens to me again.  So I put a lot of hope into this study and I was let down.  The other women in my group assured me that they were learning a great deal.  I believe them.

In education, we talk a lot about differentiation.  We teach in classes with students of all levels and abilities.  As educators, we are expected to teach in a way that is inclusive of each student, from those who are the most in need of guidance to those who need to be challenged more and everyone in between.  In this class, this study, there was no differentiation.  They taught to the lowest level.  There was nothing for me.  So I left.  I walked out, crying, but I didn’t turn back.

It’s a shame, really.  To leave a place realizing, once again, I have no control.

The message was loud and clear.  Better luck next time.

Advertisements

15 thoughts on “Better Luck Next Time

  1. Great post, Carrie! I totally relate. Have you thought of forming a group of like minded folk who are at your level, to focus more specifically on your needs?

  2. Carrie, we both love to be in control. cancer was challenging for me for the same reason. It’s a good thing you’ve been doing things “right” regardless. It probably made your body strong enough to take all those treatments — of course, it would have been way better if it prevented the cancer.

    There are studies that suggest that combining both: a good diet and exercises can help prevent a re-occurrence by as high as 50%. I’ve heard this from my nutritionist at Sloan over and over again but I don’t exercise, really. So if we do only one of the two, then it wouldn’t matter, they say. We need to do both.

    I understand your frustrations about trying to find a way to control this cancer situation. I try to eat better and have spent a lot of money on organic foods (shouldn’t these foods be organic to begin with?!?!? It’s not like we don’t know the damage GMOs can make?). These are just studies. No one knows what it takes to prevent cancer and it all sucks! But I say we continue to eat healthy and try (hard) to exercise (really telling myself that). And I am sorry this study was not as you expected.

  3. Great post–I could feel your frustrations vividly. I’m sorry that it was such a disappointing experience.

    It sucks that there is so much beyond our control. I feel at such a loss because I, too, did things “right” most of the time and still got cancer. (No extensive family history of cancer, either.) I guess I was just unlucky. I feel like I should be making an active effort to make changes, but it feels futile, ultimately.

    • That’s the feeling I had at these meetings! I’ve done everything right? I got cancer. So maybe I should just eat ice cream every day and see what happens. I wish I could do that.

  4. Hi Carrie, I live in the UK in a very rural area and like you, know what quinoa is and all about resveratol, lycopene, indoles and the rest. Sadly none of that made any difference because I got cancer as did my Mom, Aunt and a plethora of other female relavtives. I still eat healthily, exercise and attempt to stay as free from stress as possible because I guess my body doesn’t need any extra help in damaging or failing to repair its DNA! I spent a long time feeling I should’ve done more to avoid cancer. Now I realise my genes meant it was virtually impossible – all the exercise and healthy eating in the world wouldn’t have stopped this happening. I’m sorry you got treated the way you did and I wish people could be more honest with us – sometimes cancer can’t be prevented and it isn’t our fault.

    • Thank you for writing this. It’s so hard when it’s all out of our control. I never thought that they were placing blame. They didn’t have that attitude but I felt like when they were talking about preventing recurrence, they weren’t taking into consideration people like me and that was hard. I told this all to the woman who runs the study. She said she will take my criticism seriously. I hope she does.

  5. Urgh I’m sorry that partaking in the study made you feel like that! It must have been such a disappointment after all of your hopes. Will there be any follow up to this course that might be of help to you?

    I can understand a bit how you feel, I tried to keep a good diet & exercise and now I feel a bit powerless when medical professionals tell us that one of our key ways to reduce our risk is what we already were doing while we bloody developed cancer!

    All the best x

    • There is no follow up, unfortunately. They said if I ever needed any help or services that I might find useful, I should contact them. I might do that at some point but I need some distance first. I’d love some really great recipes!

  6. Hi Carrie, I think it’s horrible you left that study in tears. As an educator, I find it rather inexcusable that as you said, they taught only to the lowest level. Before cancer, I certainly can’t say I did everything right and sometimes I do feel guilty for not doing a better job of taking care of myself and exercising more. Of course, I was no slouch either and did a reasonably good job of eating healthy and exercising. But who am I kidding, right? Doing everything ‘right’ is no guarantee either. Control, we think we have a fair amount of it, but in reality, with many things we have very little.

  7. This really hit a nerve for me for a couple of reasons:
    1-like many others here, cancer has been for me a struggle about control, and the food thing has always driven me nuts. So many people I know eat worse and while I was not vegan or whatever, I still made better choices and got cancer anyway. Which of course has led me to a bit of a “what the hell have a whole cheesecake for dinner” attitude in these post treatment years. Not always, but, let’s just say I have little incentive to make the healthy choice like I would have in m y pre-cancer days.
    2-I do live in the rural area, but it is a place that attracts retirees from DC-Philly-Balto-NYC, so quinoa (and all that) is well known here. In fact most people in my life (excluding my redneck family) are the earthy crunchy Whole Foods type. So I get very frustrated every time I see headlines on women’s magazines touting the wonders of blueberries (or whatever), or some serious studies about how doctors need to educate patients about nutrition and exercise. I am shocked at this–I learned this in school in the 70s & 80s. I mean really? This kind of thing is why I am a misanthrope Curmudgeon. People who do not know basics about nutrition are just not paying attention! Unacceptable.

    • YES! But this is who they were teaching to!! Let me tell you, the day I got my second opinion on my diagnosis I brought my lunch to the hospital. I was eating a quinoa salad with chopped vegetables! The day I was diagnosed!!!!! I was really offended by the class as well. And I mentioned some of the things you said like, “Just pick up any magazine and we can learn what you are teaching here.” And, “We are New Yorkers? You think I don’t know that I have to walk and get my milk?” I was infuriated. But maybe they were speaking to a different generation. But I don’t know about that either because I work with seniors and they walk everywhere!!!! It was ridiculous and a waste of my time.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s