In the name of awareness

January 8, 2010

(by Susan) If you’re on Facebook, you’ve seen the meme going around the past couple of days. Women the world over are posting colors to their status updates. Lots of black, some pink, some white, a virtual rainbow. It’s a game that several of my circles (high school, local friends, blogging friends) are playing right now, and it looked cute if harmless. I wanted to play.

I tracked the game back a couple hours and figured it out — they were writing their bra colors! I put hands to keyboard and wrote … nothing. Truth is, I didn’t know what to write. I wanted to frivilously play along — the boys had gone to bed, and this was MY time, after all — but I couldn’t. And why couldn’t I? If you know me, you don’t have to ask. But if you’re new here, I couldn’t play along by posting the color of my bra because I don’t have one. I don’t own one.

Two years ago this month, I underwent surgery, you see. I had a double mastectomy to remove the cancer that was trying to kill me. In my right breast, Stage III inflammatory breast cancer, a fast-moving, deadly cancer that kills more than 60% of women in the first five years. (Statistics have improved somewhat since my diagnosis, but it’s still the second-deadliest cancer, second only to prostate cancer.) In my left breast, potential. Potential that the same cancer would recur, as it was in my lymph system, coursing through my body, even as we tried to kill it with six months of tri-weekly, then weekly chemotherapy.

We had been through hell. First the cancer, then the chemo tried to kill me, and both of them almost succeeded. I was in bed for months, too tired to move. I couldn’t leave the house for fear of infection during flu season — and we had to take my oldest out of preschool, to keep those germs at bay. At one point, the taxol had ravaged my nervous system so much that I lost the use of my legs.

After all that, we had to wait for my body to rally after the last chemotherapy treatment and become strong enough to survive the surgery. As each day went by, I would grow stronger — but so would the cancer. and if it grew faster than my white blood cells rebounded, then the surgery might not happen, and the tumor would be inoperable again.

It was terrible.

But eventually the day came, January 23, 2007, and I was able to have my breasts removed. I’ve never felt so relieved in all my life. This was my one big shot at getting rid of (most of) the cancer in my body, and starting life anew. This was it. This HAD to work.

And it did. I made it through surgery just fine (twittering when I woke up, and blogging about it the same day). I went through the gory aftermath of breast removal, and the difficulty of explaining it to my children. We found out that the second breast was not innocent at all, but fostering its own little type of cancer, Paget’s disease. If I had not removed it preventatively, I could have been back in chemo within the year — if it were found in time.

So I have some history here.

But I tried to shrug it off and play along. I wrote “None — In fact, I don’t even OWN one! :-)” and watched my friends play along in their own way, hoping I didn’t make anyone uncomfortable.

But what I saw was nothing short of amazing. I’d forgotten for an instant that this wasn’t about my story. This was about our story, and the Mothers With Cancer were coming out to play too. Here’s what they wrote:

“Nude.”

“Nothing.”

“White, with pockets.”

And then, in the comments, some amazing things began to happen. Their friends came out to support them, cheering them on. Friends engaged me on FB and twitter too, talking about it, asking why I felt left out, and letting me know that the whole meme was staged by some women in the midwest urging awareness of breast cancer.

Really?

Awareness?

Aren’t we aware by now, people? Don’t we know that we need to understand our own bodies, take notice of changes in one breast but not the other, and call the doctor when we see that something’s changed? Don’t we know that we need to talk to our doctor about thermography or mammograms? Don’t we know?

As I talked to friends on twitter about it last night, a single message came through from my friend and fellow survivor @stales. She said something that struck me to the core. She wrote to all: “Time for a little less “awareness” and a whole lot of “action”: the time to act is now: address the causes!” She’s smart, that @stales.

Other cancer survivors joined in, telling me that they felt left out too. After all, this was ostensibly an effort to raise awareness of breast cancer — but one in which breast cancer survivors themselves could not participate, and were reminded (as if we needed a reminder) that we didn’t need bras anymore, that most basic undergarment of women everywhere, that symbol of sexuality, for the simple reason that we had already sacrificed our breasts in a hail mary attempt to keep the rest of our bodies from dying of cancer.

That’s what it is, you know. It’s not a choice. It’s not just another treatment option. Women have mastectomies, double mastectomies, reconstruction (or not) because we have no other choice remaining that will give us a shot at life — life with our children, our partners, our families, and our friends. And so we tearfully bid our breasts goodbye. We submit to surgery, weeks of the aftermath, drains and gashes where our breasts once were. We submit to doctors and nurses and students gawking with surprise when we disrobe for exams (not the oncologists, of course, but we still need regular checkups like everyone else, you know). We submit to months of physical therapy to rip the scar tissue off the muscles that stretch to cover our ribcage. We submit to lymphedema therapy, taking up precious time, time that we fought for, time that we sacrificed for, but time that nonetheless much be used for even more medical treatment, to deal with the aftermath.

And then we go shopping.

Clothes that fit just a few months previously don’t fit anymore, you see. Every. single. shirt. is stretched out over the chest, and most new ones don’t fit right either. Princess seams, sewn to flatter the big-busted and small-busted alike only serve to remind us, the no-busted, that we are no longer princesses. V-necks are flattering, but only if they are not too deep, cut to show no cleavage, as our cleavage has been taken from us as well.

And, for a while, the reminders are everywhere. Every TV commercial with the Victoria’s Secret angels rankles. Every low-cut shirt sparks the tears. Every nightgown cut to flatter falls — flat — and we cry into our pillow.

We are aware, you see. We are all too aware, and we work to escape the reminders. Our friends dance around us for a while. They don’t invite us to the pool (have you ever gone swimsuit shopping without your breasts?). They are gentle, and careful, and form a wall of support around you.

But eventually, life moves on, and the wounds scab over, and the scars begin to form.

Until one day, one day, when a harmless meme rips them off, and you realize once again that you will never be the same.

Cross posted at Toddler Planet. If this interests you, check out the comments over there. Quite a variety!


My Cancer Lesson…

October 15, 2008

The biggest lesson that I learned from cancer is very basic and simple… Stop and Smell the Flowers. I can hear many of you now… “That’s it…that’s your lesson?”  Yes, that is it.

 

I was asked to write a guest post on the women’s website ….capessa in honor of breast cancer awareness month and their Real Women, Real Survivors theme.

 

So read the rest of my post over here today….


friend as client or client as friend

September 18, 2008

The bell rang and I just thought it was my nanny forgetting her keys again, but no. There before my eyes was a dear friend that I had not seen in months. Later that same week my girlfriend I call Roomie called and had a watershed moment. Not a moment could be found after that, about wanting to get on the first plane to the states, because I missed my room-mate so dearly.

Just when I was feeling lonely because my silly little car had a flat tire and I did not have the strength to turn a lug nut. I waited out side my door for the road service person. While the gentleman fixed my flat tire, along strolls my Irish friend with a big hug and a how are you.  I retort: Fine, what are you doing in my neck of the woods today? She said:Didn’t you remember you have physical therapy. I said yes I just don’t know who is going to show up. She and I had a good laugh, because it was her. She is officially my new physical therapist. She said there was something great about having a friend as a client or was it client as a friend. Either way it was a win win situation for both of us.

I thanked the AAA road service gentleman, and we were on our way to have a good catch up chat  during the treatment and knowing that she gets paid to visit and I have a constant time to see her weekly. It’s a perfect situation. I am so happy I could burst!


Stick to your goals!

September 10, 2008

Do not alter your ambitions to match the ambitions of others. Stick to your goals! Well that was my Horror-scope today, and as I screen through what other mom bloggers are writing about, I ponder if my blog is interesting enough or down right stale.

I hear the school children play baseball in the park below my house and I stop for more than a few moments and enjoy the sounds of cheering children, cheering for their classmates and fellow team members. Then I am really drawn in as if it is the world series, I found myself cheering.

Then it struck me…

This is my goal. Not only do I want to blog about breast cancer, but I also want to cheer for the other players- IE. researcher, docs and specialists and I want to be drawn in enough to find myself cheering for each and every individual on the field of cancer… people like  the children below in the park.

So I am taking the plunge and agreed to read the contract for Trusera. I hope to start cheering /blogging as soon as possible. For those who have be following this process, thanks for your input. I will look out for all the pitfalls that are suggested.


flying high on the good news

September 8, 2008

http://cancervisa.wordpress.com/2008/07/14/blood-levels-are-up-and-my-tumor-markers-are-down/

More good news, tumor marker only 52 point off of what is considered normal.  25 is normal, I have 77. I just wanted to share and spread the love and joy I am feeling. I can’t wait to let my family know that their diligent prayers are working!


inspired by Philly gig

September 4, 2008

I was happily inspired to see some of the gals getting lime light on what my ex use to call the Rubber Chicken circuit. Meals paid, cushy hotel room  in Philly  (love Philly folk) use of the facilities, IE sauna/ spa rooms.

I don’t know if any one else has been approached to blog for a health organization before. If so, what does it entail? I just was watching a report about housing problems in the USA and gas crunch. It was a how to survive story. Being a natural cancer survivalist I listened to the half lame advise of Augmenting my income.

Augmentation has an entirely different meaning in breast cancer. Augmented breast are way different than augmented income. So I ponder how I as  cancer patient can get a little fun money without losing my face to ad sense or the like. I am not even promoting my own star on Stand up to cancer. I don’t want to spin my wheels. But the attraction of blogging, which I love to do anyway and get paid for my input seems right up my alley. However, I know I am walking into this situation a bit blind, not knowing what to expect exactly.

Feel reminiscent of my first breast doc appointment. Unsure of what was really going on at first. Any clue?  Let me know via a comment or a private e-mail what I should be looking out for.  ie copyright, picture on promotional items, I don’t need my sweetie to be the poster child for breast cancer. That is where I draw the line, but maybe you could help me draw some other lines that you have faced that I will be shortly confronted with. ( please don’t cringe that I ended the sentence with a preposition) I might have bigger fish to fry than I am aware of.


count down to 2 years of chemo

September 1, 2008
sunrise balloon

sunrise balloon

September 14Th is my second anniversary of Life Long Chemotherapy. It is also my one year Anniversary of my blog. I have been thinking about gifts for the “girls” at the outpatient treatment wing.  The nurses have become quite attached to me and I am grateful for their interest in the development of my little one. Last year I gave them all a tea cup and saucer with a card in it reading… thanks for the care. I feel I need to buy something that lives. small plant or flowering bush for all 14 staff.

Time for me to hunt down a thank you for everything gift. Any suggestions? I’ve got 7 days or 13 if I show up on the exact day, which is not my chemo day.

Indoor cherry tomato plants, cactus, miniture rose bush? time for some shopping