Wednesday, October 31, 2012

It's almost over...and yet it has only just begun

Thank goodness....October is almost over.  With it's barrage of that...and we'll help cure cancer.  I know...I've talked about how jaded I've become.  I feel that after more than 20 years, we should be farther along with this....and while the trials for breast cancer drugs are done on advanced cancer cases....very few trials are actually looking at what can defeat cancer which has metastasized.

This time of well as around mother's day, all the television celebrities come out and tell their stories....this year was no different.  I watched Hoda Kotb talk about being saved....and I wrote on the Today Show with Kathy Lee and Hoda Kotb's facebook page asking her to not forget us....the MBC'ers.  I also pointed out that many of those stage I and stage 0 cancer survivors would find that it had returned....many as stage IV, many after that magical date of five years out.  I asked that she would look at us and allow us to have a voice.
I doubt it will make a difference.  I doubt many people saw and thought about what I said.

I probably shouldn't have written about this....I know that it makes many survivors and their families sad.  We don't want to remember the rather dire statistics.  For a little would be nice to live in denial.  But, we are surrounded with pink....Just like my daughter and I were in this photo....Fortunately, soon, after the stuff has landed in the clearance bins...we may just not have to have it in our faces anymore.

In the meantime, run over to the Metastatic Breast Cancer site....they are extending their campaign until November 30....for ever click to the website, for every share and tweet, $1 will be donated to MBC. Yah.  Now that's the way to do it!  The Elephant in the Pink Metastatic Breast Cancer

Monday, October 22, 2012

The Possible Impossible

Not too long ago, I got an email from Anne Copeland and as a tag line on the bottom of her email, Annie wrote this:

"The impossible could not have happened, therefore the impossible must be possible in spite of appearances." - Agatha Christie

Wow.  I couldn't agree more.  Anne Copeland is a pretty interesting person and one we all could take a leaf from.  Anne started Fiberarts Connection in 2003 for physically challenged and emerging artists.  In 2005, the organization achieved 501(c)3 status.  Annie started Fiberarts Connection because of her brother who developed a brain tumor after service in Vietnam.  Anne herself is physically challenged having among other things, neuropathy in her hands and feet.  I remember this as I do too.

So....take Anne as your inspiration and do something impossible....because it is by definition, just might be a little challenge.   You can find more about Fiberarts Connection here

Thursday, October 18, 2012

Coming unhinged

Earlier this week, I got an email from someone who had just been diagnosed with metastatic Breast cancer.  She was asking me what I did, how I handled it.  

I think I have actually posted on this before, but it is worth repeating here.  Although I responded to her about finding out about MBC, it could just as easily be something else...or even the stress and anxiety we feel when we get ready for a scan.  Here's what I told her:

Take a deep breath.  I cried.  a lot.  I had a 4 year old daughter for heaven sakes.  I was terrified....then I decided that most people who got this news were probably not as healthy as I was , and most were not as young.....and if I were a betting person, I would bet on me.  10% survived, and that was an average, so I decided I would do what I had to and that I would beat it.  

Be with friends,  pray of you are a praying sort, and do what you can to help your body defeat it....get sleep, eat well and exercise as you are able.   Get with a support group and certainly keep on calling out to your other stage 4 peeps.....we know what it is like....most people don't.  

Remember, this is a process, and you will work through it.  Let yourself grieve.  Let yourself get 
angry....and take care of yourself.

That is the best I can offer.  It does get easier, and sometime you are doing well and then the feelings and fear smack you....but, take one day at a time, don't look down the road as all you will be doing is making a fantasy of fear ( unless of course, you are seeing yourself as very healthy, but stay away from the accepted prognosis), and doing what my mom always called borrowing trouble.  

I still stand by this advice.....We do go through this as a process....we grow, even in the face of death.  We come to new realizations and understandings.  We have an unwelcome companion by our side, but it is possible to learn to walk with him and accept, maybe begrudgingly, that he is there.  Sometimes it can even produce some interesting conversations. 

Wednesday, October 10, 2012

An Answer to Pinktober

A couple of weeks ago, I took my husband to the airport at 5:00 am.  I was stunned to see this pink lighted control tower....done in recognition of Breast Cancer Awareness Month.  My response? YOU HAVE TO BE FRIGGING KIDDING ME!  Does this pink phallic symbol have ANYTHING to do to HELP those of us who have been stricken? Does it really do anything to help "breast cancer awareness?"

I have to admit, some of us are getting a little bit militant about this.  Me included.  After 20 years of "breast cancer awareness" don't you think we ARE aware?  While strides have been made, those of us who have metastatic breast cancer (MBC or stage IV breast cancer where it has attacked a site outside of the breast of the lymph nodes) are largely ignored by the pink tide.  For most people, they have no clue.

Yes, catching breast cancer early does help...but 25-30% of those diagnosed with breast cancer will have a recurrence, quite a few of those early breast cancer diagnoses will have it return as a stage IV cancer.  In all the funds raised for breast cancer awareness only 5% of the funds go to study MBC.  Over 40,000 people (MEN and women) die of breast cancer each often seems like in the pink hoop-de-la, we're forgotten.  I am aware...and I have a second recurrence of mets to the bone...this time in many areas.

For a lot of people who were diagnosed with MBC, talking about it is scary.  Those of us putting out the numbers are putting out a lot of scary information.  Yes, it IS scary.  But we have to talk about it.  It was only through the promotion of various organizations, the Pink Ribbon project and Susan G. Komen that we have brought the fight to the stage we is rare these days for a woman to go in for a biopsy and come out without a breast like Nancy Reagan did, and that's a good thing.   But we need to do more.

Nancy's Point did a really good post on why it is important to talk about it and to remind people that there are those of us who are literally fighting for our lives.  Take a look at her blog post here  In addition, there is a great website for those of us who have it,  Their website has a lot of information, but their blog is very useful.

And here is a simple thing....sort of a silly thing....but oh so needed. has put out a call..if you go to their site, $1 is donated to MBC research; if you share it on Face Book, another $1 is donated...if you tweet or share through other social media, then more money is donated.  So...go here and read more.  I will be very glad you did...and if you share? Well, I'll be happier yet again!

Saturday, October 6, 2012

Reconstruction or Not... this is a restoration of an 1887 building, not a reconstruction (Birdseye Mercantile in Avon, Montana, see my other blog for more info).

Breast reconstruction is a highly personal choice.  One which needs to be considered carefully.  Recently, a friend of mine who had a bi-lateral mastectomy told me that after several years, she's decided to have reconstruction in the spring.  I chose not to have reconstruction.  My sister-in-law had reconstruction but confided in me several years ago that if she had it to do over again, she wouldn't.

I chose not to have reconstruction because in 1998, my choices were limited to one which took abdominal muscles, and another which took muscles from the back.  I couldn't face another surgery, and it seemed to me that these two muscle groups were pretty important.  While I once had nice breasts, I decided to just use a prosthesis, and not worry about it.

My sister-in-law told me that it never really felt like a breast (reconstruction doesn't replace the nerves, so you don't have the sensation that you would normally have with a breast).  Another person I knew in Connecticut had horrible results, even though she went to a very good surgeon.  Yet another friend here went to New Orleans to have surgery which at the time was only offered there which used muscles from your derriere.  She was very happy with that surgery.

Melanie Testa, who had a bi-lateral mastectomy has chosen to not use prosthesis at all....Something I wouldn't do because I have one breast and I found while waiting for the surgery site to heal and to be fitted for the mastectomy prosthesis, my remaining breast (being a 34C) was large enough that it threw my alignment out and gave me a back ache. By wearing the prosthesis, the weight of the silicone once again balances me and I don't have back issues because of it.

Melanie calls herself a "flattie."  I would be a "con-cavey" as I suspect I had more tissue taken than she did, and I definitely have a divot where the breast once was.  She is of normal weight...and I know that some of my friends who have had bilaterals and are larger women sometimes have a little roll...which shows if they don't have the breasts....

Melanie has experienced some interesting things since she has chosen not to wear the prosthesis or have reconstruction.  While she says that prosthesis can contribute to lymphedema, I am not sure that that is the case.  I haven't known women who have it who can attribute it to that, it is more often a result of the scar tissue tightening, an injury, or a muscle pull or other damage to the area.  She also mentions that the prosthesis rubs against the scars....and I can attest that that has never happened to me.  I have never had irritated tissue from wearing the prosthesis.  However, I do agree that reconstruction is not a given, and that people should be well informed as to their choices.

To that end, she is hosting a Pocket challenge.  She is collecting pockets made in recognition of people who have chosen NOT to have reconstruction.  You are to make a pocket per her instructions on her blog, and send it to her during the week of October 22.  You need to sign up on her blog, and she will send you the information to return the pieces to her.  She wants to collect 1,000 in order to submit it for an article to bring it to the awareness of people during this deluge of pink month...Please pass the word on.