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 year...Yet....it 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 have....it 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, Metavivor.org.  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. MBCaware.org 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!

Reconstruction or Not...

Ok...so 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.

Thinking Pink

Today I took a look at the Dayton Daily News and was just a little revolted by the fact that they used pink paper as part of their Breast Cancer Awareness push. Pink newsprint isn't very pretty....and it isn't very easy to read through.

Sometimes I think that the "thinking pink" campaigns have gone a little far. For those of us who live with breast cancer, thinking of breast cancer only during Breast Cancer Awareness month (October) or around Mother's Day (when there is another push) seems a little trite.

I also object to all the items which are sold in pink and report a "portion of the sale of this item goes for Breast Cancer Awareness". ...or something similar. Sometimes, these donation from the sale of pink items are only a very small percentage of the item's profit. The other thing which annoys me about this is that the company selling the item is able to take the tax write off as a charitable gift whereas the person making the purchase, ostensibly to help breast cancer programs gets to deduct nothing.

I suppose I'm wrong. Something is better than nothing. I suppose if 10 women are encouraged to go get mammograms or are able to be helped by the foundations supported by these companies, then the promotions are worthwhile.

On the other hand, I had been involved in the Susan Koman Race for the Cure in Connecticut for all the years it ran there while I lived there save one, and that was the first year I was diagnosed and was having surgery on the Friday before the race at Walnut Hill. Yet, in the years which have passed, we have made precious little progress.

The treatments available since the last treatment I had 12 years ago haven't changed. Tiny steps have been made forward.

How could breast cancer survivors be better served and why haven't we made more progress? I expressed this quandary with a friend of mine who was at breakfast with me. She related that someone had pointed out that what we need is a Breast specialist...just as we have specialists in various heart, brain or whatever diseases. We are treating breast cancer and breast issues piecemeal.

I agree. If someone would look at us as whole individuals and how the cancer effects all portions of our lives, perhaps we would be able to be better helped. I think of the things I have experienced, from the sexual side effects (pain, lack of interest etc) from the chemo and subsequent oophrectomy to the current issue with the fracture in my pelvis caused by the cancer and the high-dose radiation to the pelvis long after the radiation occurred. There's sort of a lackadaisical response.

I also think back to when I was nursing. I had plugged ducts. The OBGYN wasn't too interested....they were more interested in the pregnancy issues. The pediatrician didn't really know, they were interested in the health of my baby. What was really happening was the the cancer in the ductal tissue was blocking the ducts......and I simply didn't know.

Think about how it might have turned out if I was able to go to someone who actually studied the breast and knew about breast health. Think about how it might be even now if there was someone to look at all the side effects and how best to manage them now that I am a long term breast cancer survivor.

Maybe we'll get there someday. Maybe buying and thinking pink will help us get there. It just needs to be sooner....not later. Think pink, but better yet, Act Pink.