My own personal crying game

An Open Letter to Joan & Hoda

NOTE: Every time a patient is the subject of an article, post, blog etc…. it should be first noted that PATIENTS have the right to describe, interpret, feel and portray their own experience in any way they want. Any way they want. I make no judgment on patients attempting to help the broader community and applaud all efforts, even when I have a different view.

Sitting up each morning poses a challenge for me these days. Recently my metastasized metaplastic breast cancer moved into my spine. It’s been radiated to relieve pressure but there is still damage and I am very careful about how I move out of my bed and into the day.

Emotionally, the mornings are difficult for me. It is still dark out and I am in some pain from the stiffness. I cannot help my husband get ready for the day, he must do all of the household chores, feeding the dogs, making the bed etc…. I feel  a bit of an invalid.

Tuesday morning I turned on the TV  hoping to lighten the mood and move my mind from the pain to a topic that would distract me. The TODAY show was on and so that seemed like the ticket for the moment.

A few news items were on and then a promo for an upcoming segment “Joan Lunden” talking about her cancer and how she is moving from the treatment phase and choosing to work as an advocate for patients. I was interested in hearing how she was and hoping the news was good.

The piece was nice, a repeat of her struggles and then onto her new goals and efforts. Mentally, I gave her a big hug and wished the best. I was glad to hear some good news and as the piece wrapped up feeling fine about the interview.

And then….. I cried. And cried, and cried.

Why? Because Joan and Hoda cut me to the bone.

Of course they didn’t mean to, but they did…. And it hurt. A lot.

Here: you can see what they said.

Joan Lunden and Hoda Kotb (go to 5:20)

“The whole thing is that you want to catch it early… and the other thing, ‘expect to win.”

These are two of the most hurtful platitudes that are tossed around the breast cancer community and to hear them on national television is difficult.  Let me tell you why.

Catch it early:

I think about this one often.  Technically, my first tumor was found at 2.0 CM…. that’s about stage 1b-2a. This is early by most standards. It isn’t too big and it hasn’t spread out of the breast.

By the “Catch it early standard” I should be cured and happily on my way to a long life, not on my third diagnosis.

But there is actually more to my ‘Catch it early” story. The truth is that I was considered high risk for years and been getting checked every 6 months. I had multiple benign lumps removed through my life and for months prior to my first diagnosis I had been on tamoxifen to help my body fight off the chance of a tumor.  This is called “Chemoprevention.” The point of the “Chemoprevention” is to stop you from ever getting cancer.

So, in the “early detection’ world, I should have been golden. I was under the care of an oncologist and being watched closely for months BEFORE I ever had a tumor.

How much earlier could I catch it?

This is what I call the “early detection myth.’ Advocacy groups, medical professionals and misguided patients have repeated this myth so often that the public actually believes that women DON’T die of cancer if they catch it early. People think we are NOT dying. Don’t take my word for it…. Talk to others…. People believe breast cancer is cured for the vast majority of women. And so, I cried…. And cried…. And cried because I am dying and there was literally nothing I could do about it. Cancer wants to kill me and it most likely will and all the monitoring in the world did nothing for me at all.

 

“Your attitude will cure your cancer”

Right after telling me that I will not die of cancer if I am vigilant and ‘catch it early.’  Things got worse. Joan and Hoda were not done telling me that I had done something wrong. They piled on with the deepest cut of all….

“Expect to win and stay engaged in life,” Joan said and Hoda continued the thought with these words, “….I know a lot of women with breast cancer and they all have one thing in common, ‘they are still here.’ 

And so then I cried…. Even more…. And even more deeply and longer.

Of course this sounds like such innocuous advice "be positive!" It can't hurt and could likely help you deal with side effects and emotional problems.... but will it cure cancer? No, it will not. "Expecting to win" is not a medical intervention, it might make your days better but it will not change your outcome.

So why on earth do people say such ridiculous things?  There is more to it than simply implying that positive thinking will cure cancer, consider this:

Joan and Hoda, I know what you think you said but I want you to actually hear what you said.

You told me that:

1. My cancer is my fault (I wasn't vigilant enough)

2. If I had "expected to win" each time I was diagnosed I would not be dying

3. Only stupid women die of cancer because only stupid women don’t get screened, advocate for themselves or take care of their breast health

4. Other women are living because they WANT to…. So by extension, I must not want to live.

5. Only survivors are winners, if you don’t survive there is something wrong with you.

I cried…. And cried…. For myself  and I cried and cried for the other women who will get an aggressive cancer and die. It won’t matter what treatment they take, how much they love their families or how well the follow doctors orders, they will die and before they do…. Other patients will publicly denounce them as women who did not expect to survive, women who do not have valid experiences, women who failed themselves and their families. And THAT is why I cried.