Pinktober means

I have never, not even once in thirteen years, danced with "NED" in my dance with metastatic breast cancer. NED, of course, means no evidence of disease. I started off with bone mets, and once with them, as with a broken bone, there are always leftover reminders. So no, I've never danced with NED.

I've also been overwhelmed by the newest mets-sisters belief that they are dying of mets; that pink is not a cure; and that there is nowhere near enough research on mets. The second and third bits are true: pink isn't a cure and the NCI still funds too little towards any metastatic cancer.

But I have have a hard time grasping the first point. Am I dying from mets? How does that explain 13 years of living with it?

I remind myself that at the very beginning of this dance with advanced cancer I dreamed that my house was too noisy with other people I didn't know. I ran from room to room asking them to be quiet. And when I woke up, I realized that the house was my body and the people were my tumors. I gave my cancer a chance to quiet up and I would give it a home forever, because if I died, my cancer would die.

That's still true after 13 years, and I have to remind myself of it, especially now that I'm involved with younger activists who argue differently. I still want to be involved with them. They are the future of metastatic cancer.

I just am not ready to die.

Think Before You Pink.

The day we died on the Capital.

Awash in Pink.

Story half told

This is the project I couldn't share before today. Go over to Story Half Told and you'll find the stories of five American women living with metastatic breast cancer--  including me!  Or use Instagram or Twitter and  #storyhalftold. I will share more about making the film and being followed by my own paparazzo (singular?).

Big changes

So what do unhealthy people do when they have spare time? They pack up their house and move. Yes we are moving. There are lots of benefits for us in moving. We can cut our monthly expenses in half. I can consider stop working. I can get more rest.

I just have to survive packing and moving.

We have been discussing this for a while. We bought this house when I was healthy and working full time in Boston and commuting by public transportation. As my health has tanked, there is no reason to believe I will ever be going back into Boston daily. If we move 10 miles or so away, we can save big time.

In the meantime, we are packing, house hunting, packing, preparing our house, packing, and packing. These are all things that healthy bodies are capable of but my not quite so healthy body doesn't like any of it. And my mind never likes change either.

Low risk 'cancers'

So is it cancer or not? Sometimes they can't tell. For example which cases of DCIS will go on to turn into a potentially fatal breast cancer. Or which cases of thyroid lesions will actually grow into thyroid cancer? There is a growing epidemic of new cases of thyroid cancer and the question is which cases that are discovered will actually turn into cancer that could be fatal and which will not.

So what do you do? A lot of people fear the word cancer so much they just want it out of their body. One school of thought for the thyroid lesions that should not become a problem is to rename them "papillary lesions of indolent course". That just sounds so 'benign'.....

So if the word 'cancer' is taken out of the discussion, active surveillance might be better. I mean why go through surgery, etc for something that doesn't require treatment?  "In many cases, active surveillance may be preferred over surgery by patients with small, relatively benign cancers that could take decades to grow to any appreciable size or cause life-threatening problems."

I have so many body parts currently under 'active surveillance' for multiple issues that I have lost count. I would be happy with that for additional body parts instead of surgery, chemo or radiation. This is much easier with thyroid cancer where the area can be easily ultrasounded and palpated to monitor growth. But not so much with DCIS where breast cancer can be much quicker to grow and harder to find.

Language can have a big impact on people's opinions of their diagnosis. The word cancer strikes fear into most people's brain. It paralyzes them, they are instantly going to die! But as more and more is learned about cancer, its detection, and treatment, maybe the best bet is to retrain our brains as to what will kill us and what won't.

An example is when AIDS was discovered it was instantly a terminal disease. Now people are living for decades with it and it is now chronic and not fatal. But the term AIDS still strikes fear into many but that is slowly calming.

I hope that the word 'cancer' also does not always strike fear into all as more and more of us are still around to talk about our diagnoses decades later.

Taking the fun out

"Several studies have linked alcohol consumption to a higher risk of many cancers, including breast, mouth, throat, larynx, esophagus, liver, and colon and rectum. The risk rises with the amount of alcohol consumed."

Alcohol is evil and causes cancer. Great. Thanks. Anything else I need to worry about? Besides walking under ladders, playing in traffic, and walking by yourself in bad neighborhoods.

The latest blog post from Dana Farber's Insight (which is actually a pretty good blog) talks about alcohol consumption and cancer. The American Cancer Society recommends 1 drink a day for women and two for men. An oncologist recommends an occasional drink, if any.

My thought process from being the cancer patient is 'Excuse me I have cancer and my life currently sucks, I might want to drink more often than occasionally.' Whatever happened to the medical advice of hot lemonade and whiskey for a sore throat?

When I was 19 and told I had thyroid cancer, I was told by my doctor that my treatment was done and I should take care of myself, eat healthy, and get plenty of sleep. Thanks. I could have figured that out myself. But I did put a few years of thought into it and decided that I was going to live my life on my terms and not be 'boring'.

I was young and wanted to be a normal person and not 'that girl with cancer' for the rest of my life. So I did things my way. Yes I might drink alcohol. I might have partaken of other substances at different times in my life as well.

I don't want my health issues to rule my life. I want to be normal as much as possible. I want to do the things I want. I may not be able to climb a mountain now or ski down one but I can still go to the beach and out for fried clams. (Eeek! Fried food! Cholesterol alert!) Life requires little indulgences to be fun.

The way I see it, it is my body and my life. If I am not harming anyone else and want to have wine with dinner, I can't see a problem in it. However if you see me on a street corner drinking out of a bottle in a paper bag, feel free to interfere.