Wednesday, September 23, 2015

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.

Monday, September 21, 2015

Things are getting tough all around

At this point, some of this blogging is just self-indulgence. Maybe I'll say it's a bit a therapy to get it out there as well.... but mostly, I'm just recording what is going on.

And, what is going on is that its getting tough up in here.

It's my back... yeah, my back. Like having giant lung tumors wouldn't be enough, I have this terrible back problem. The cancer moved into my spine a few weeks ago (Quite quickly I might add). It fractured some bones in my back. I needed radiation, which I got in short order. Now, I need to know that the radiation worked and that the bones are starting to settle back into place.

In the mean time, I am supposed to be wearing a brace. At first I embraced the brace, I still do but it's is difficult because the brace itself confines my back, forces me into a postilion that becomes uncomfortable over time and in the end causes me a great deal of pain and muscle ache.

It's this problem that has come to define my days. I cannot drive, I cannot move easily, I cannot pick things up, bend over or lay down easily. I cannot easily work on my computer because I am not supposed to bend that angle. I have to be careful about coughing due to the jarring of my back. I can't eat foods that cause phlem.... ice cream, mild etc..... so a nice comforting chocolate shake is out of the question for me.

I'm simply stuck.... stuck watching TV, vegetating and allowing my my to wander to difficult/dark  places. I'm making it hard on myself and I am making it hard n my husband. I am making it hard all over.

What will help? Fixing my back will help.... but I am not there yet.... right now, I am here... sitting in front a a TV, unable to do much work, but fully capable of going down the Rabbit hole.....

"One pill makes you larger and one pill makes you small....." The one I am looking for is the "one that fixes it all."

Tuesday, September 15, 2015

The mornings are earsier

The past few months (maybe 2?) it's hard to remember.... they have been full. Full of bad news and pain, and doctors and appointments and things that scare me to no end.

I'm afraid too much has gone on to even really attempt to catch others up on what has happened. So, I won't try for now.... for now I will say, the mornings are better.

In the mornings, it takes a minute to move into position but after the night -resting- the joints I am not using enough right now and the muscles that need exercise, they are not so sore and they allow me to feel a little like myself.

I manage to sit myself up, my husband always nearby to help, to say some prayers. The prayers are an amazing comfort.... "I cried out to God, and he healed me."I never knew how much comfort the prayers would bring.... but they have

My spine is fractured from the cancer  in the bone. The radiation is killing that cancer but I cannot move around too much for fear of hurting my back more before the fractures heal. I am in a brace. There are other pains in my lower back and leg and I live in shear terror that these pains must be looked at as well. I can't take more bad news but I can't afford to ignore anything as well. If I could just repair these issues.... I'd be elated to ONLY worry about lung mets.....

In the mornings I get about 4-5 hours of genuine relief. I am trying to fill those hours working on something of value. Working on advocacy, connecting with friends and any other important work I can manage.

I don't know how long I can make it, how lucky I will be with the medicine - all I know is there is work to be done, things to be said and I am not done and the mornings are the easiest.