From Co-Survivor to Survivor - How the Cancer Experience Changed My Advocacy

Hope changes everything. Hope is everything.

This morning there's been an extraordinary dialog on Twitter (http://twitter.com/jbbc) regarding cancer advocacy, and whether or not those who have not been diagnosed with cancer can truly understand survivors/survivorship. The answer is, OF COURSE! In fact, "co-survivors" -- or the daughters, sons, partners, sisters, brothers, friends -- have some of the strongest voices in the survivorship community. What makes an effective advocate is the ability to listen, to bear witness, and then transform that powerful listening into action.

Thousands of people get up and do this every day for one compelling reason: they want to make some aspect of the cancer experience better for someone else. I hear this time and time again. It never ceases to move me, in the same way I'm moved when families line the roads of a charity rides -- and clap. This speaks to what we are all made of more than anything I know.

We need every voice possible in the national and -- with thanks to the Lance Armstrong Foundation -- global dialog on cancer. The more we know about each other's perspective the better off we all are.

As a co-survivor both of my parents and a much-loved uncle had all died of cancer by the time I was 33. As a co-survivor I felt that bolt of lightning fear when my husband was diagnosed with melanoma the first time, then when it recurred. But as I survivor, what grew in me was hope. The hope that together we can defeat this illness called cancer. The hope that together we can speak up for change. And the best possible hope that -- if anything else -- we can discuss all of this in friendship and love.

Thanks again to Marie O'Connor, for her post on Journeying Beyond Breast Cancer.

Beyond Our Words

We remember.

We remember exactly where we were, what we were doing, who we were talking to.   It was a beautiful September day.  And then it wasn't anymore.  And it wasn't for a long time.

Ten years later  I simply need to let my thoughts fall. On Friday night I watched a 9-11 anniversary special on television and oddly enough, I wanted more. But more what?  More words. More words examining, thinking, looking with fresh perspectives. More words leading us to a path that is different from the one this country has traveled since that fateful day. A path that initially brought people together but sadly, began to diverge into hardened stances where compassion seems to have evaporated.

Because it impossible for anyone to forget. All you need is one image. Just one image, of the north tower moments after it was hit, replays all the 9-11 stories, of both towers falling, of people running for their lives in NY and DC, a crater in a Pennsylvania.  And bravery beyond what most of us know - with men who trudged 100 pounds of gear up the down staircases, and men who wouldn't take no for answer and stormed a cockpit. People whose world went dark and reached through their own moment of hellish terror to bring another to safety.

To honor their courage, to truly honor the memory of what happened, we need to do better.  Beyond our words. We need to move beyond our words. Before they grow meaningless.

#  #  #

Samuel Barber, Adagio for Strings http://www.youtube.com/watch?v=BGMwNe9WWmE

Double mastectomy or not?

The latest fashionable breast cancer decision is to have a double mastectomy in a preventive effort. Well there was a super secret twenty year study going on about the benefits of that very same surgery.

Basically what it boils down to is that unless you have the BRCA gene or other hereditary breast cancer, there is no benefit to removing a healthy breast. And the potential complications of the surgery can have a negative effect on the patient.


"Tuttle and his coauthors used published data to develop a model for predicting survival rates over 20 years for women diagnosed with stage I or II cancer at age 40, 50 or 60.

According to the existing data, more than 98 percent of women diagnosed with stage I breast cancer will survive at least 10 years, and 90 percent will survive for 20 years. For stage II breast cancer, 77 percent survive for at least 10 years and 58 percent survive at least 20 years.

For all age groups and tumor types in the study, the risk of developing cancer in the opposite breast after diagnosis was less than one percent each year, the authors wrote in the Journal of the National Cancer Institute."

So this study shows that while some women may want an elective double mastectomy, there is no benefit. I was also pleased to see the ten and twenty year survival rates (which are difficult to find) for stage I and II breast cancer. I am moving away from the five year time frame and starting to think about the ten year time frame and longer. And no I didn't even consider a single or double mastectomy.

The truth is not inthe number of years for cancer patients

Last week a friend  announced rather publicly on Facebook that she was celebrating 34 years since her cancer diagnosis. I think I have mentioned her in posts previously. My first cancer's diagnosis is 33 years in August. The difference is she was stage IV ovarian cancer in 1980. I was stage I thyroid cancer in 1981. But am only at 7 years out from my more troublesome stage II breast cancer.

At first glance those number seem good. I mean we are still here. But they don't talk about the stress and the emotions behind it. We now have had years to learn to deal with it. By now being more open about celebrating, it is clear we are both doing that.

She has clearly defied the odds. But the numbers do not tell the tale of the life behind it.So we are still here but the truth is not in the numbers.

Double mastectomy or not?

The latest fashionable breast cancer decision is to have a double mastectomy in a preventive effort. Well there was a super secret twenty year study going on about the benefits of that very same surgery.

Basically what it boils down to is that unless you have the BRCA gene or other hereditary breast cancer, there is no benefit to removing a healthy breast. And the potential complications of the surgery can have a negative effect on the patient.


"Tuttle and his coauthors used published data to develop a model for predicting survival rates over 20 years for women diagnosed with stage I or II cancer at age 40, 50 or 60.

According to the existing data, more than 98 percent of women diagnosed with stage I breast cancer will survive at least 10 years, and 90 percent will survive for 20 years. For stage II breast cancer, 77 percent survive for at least 10 years and 58 percent survive at least 20 years.

For all age groups and tumor types in the study, the risk of developing cancer in the opposite breast after diagnosis was less than one percent each year, the authors wrote in the Journal of the National Cancer Institute."

So this study shows that while some women may want an elective double mastectomy, there is no benefit. I was also pleased to see the ten and twenty year survival rates (which are difficult to find) for stage I and II breast cancer. I am moving away from the five year time frame and starting to think about the ten year time frame and longer. And no I didn't even consider a single or double mastectomy.

Then there's that survivor thing

I started this post in March of 2009. I keep a bunch of posts in draft format that because I change my mind, something else catches my attention, or I just forget (most common). They can sit for months or years and then the links I was going to write about go away or I change my mind and decide I am still inspired.

I know I have posted on this before. I do not consider myself a cancer survivor. I am someone living with two cancer diagnoses.  I am in a special little class of people (I like being called special. I like calling myself special. Its better than calling myself a survivor to me.) When asked, I do not say I am a cancer survivor. I say 'I've had cancer twice myself.' And only if I think its their business.

I think survivor was dreamed up by someone who isn't dealing with it. When you survive something you out last it. But if there is no cure, how do you survive it? Eventually something is going to do you in - maybe not cancer, maybe you end up on the Titanic or something... Mental note to self, do not take transatlantic trips during ice berg season.

My take is that I survived a bunch of doctor appointments.I am still surviving because I have an unending list of doctor appointments (which reminds me I need to fix some of them that were changed without my permission). That is my project for today, along with holiday cards, gift wrapping, cleaning, folding laundry, going to the gym and the grocery store. I will survive all that as well.

I used to get more aggravated by the use of the word 'survivor' than I am now. I know some people throw around the word survivor to describe themselves. I think I am okay with that. I think I get more irked by the organizations that start labelling people or the news broadcasters which start saying 'she's a SURVIVOR...' and 'as a SURVIVOR...'

I guess I am saying, people can label themselves but don't label others. Its the same if someone wants to call him/herself a fool, that is fine by me. But don't call someone else a fool - that's rude/mean, etc.

So no, do not call me a survivor. Call me someone special. It sounds better and makes me feel good.

The truth is not inthe number of years for cancer patients

Last week a friend  announced rather publicly on Facebook that she was celebrating 34 years since her cancer diagnosis. I think I have mentioned her in posts previously. My first cancer's diagnosis is 33 years in August. The difference is she was stage IV ovarian cancer in 1980. I was stage I thyroid cancer in 1981. But am only at 7 years out from my more troublesome stage II breast cancer.

At first glance those number seem good. I mean we are still here. But they don't talk about the stress and the emotions behind it. We now have had years to learn to deal with it. By now being more open about celebrating, it is clear we are both doing that.

She has clearly defied the odds. But the numbers do not tell the tale of the life behind it.So we are still here but the truth is not in the numbers.