Because That’s How I Roll…

31 01 2011

Don't Call the Fashion Police. And anyway, they're tired of coming out here to give me citations.

I’d say it myself, but the Eurythymics do it so much better:

Would I lie to you?
Would I lie to you, honey?
Now would I say something that wasn’t true?
I’m asking you Sugar, would I lie to you?

Nope.

So, when I tell you that this is how I rolled over the weekend, it’s true. 37 times down the sledhill out back with my hubby, son, friends, neighbors, family.

It’s also true that I don’t/can’t/won’t be able to roll this way every single minute of every single day that lies ahead.

But I’ll be rolling this way a lot more than not.

That I can promise.

And no, I would not lie to you.

— Amy Rauch Neilson

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Blog Readers, You Are Warriors!

31 01 2011

Blog Readers, you are already proving to be Email Subscription Warriors! Since I sent out my appeal for blog subscribers at 10 p.m. last night, 37 of you have signed up!

The site had just 8 “official subscribers” as of early yesterday, when I began my quest to figure out how to add the Email Subscription Widget (yes, it’s really called a Widget!), and sent out the call that my goal is 5,000 by March 3, 2011.

That takes us to 45…and counting…watch for more updates…





The Good News, the Bad News…but always, Hope

25 01 2011

I am really scared. Yesterday’s doctor’s appt. did indeed bring the fabulous news that my tumor is triple-negative. It also brought the shocking news that my cancer is at a Stage 3 or Stage 4. I had not heard these “staging numbers” before yesterday and early on in this journey that is only 16 days old but feels like 16 years, the hope was that we were looking at an early stage breast cancer, Stage 1 or Stage 2.

The MRI results yesterday told a different story, with a sizeable tumor and lymph node involvement in my left breast as well as a possible spot on my clavicle and right lung. I leave for the lung biopsy in a little over an hour. Results should be in by Friday. Please pray that the results are negative, that it’s a scar from a previous bronchitis. That result would scale me back to a Stage 3, with a much more favorable, long-term manageable hope.

All of that said, in breast cancer, Stage 3 or Stage 4 is not necessarily a death sentence. I have not been given weeks or months to live. Though no one has a crystal ball, I could conceivably live for many years through the amazing new treatments — like Iniparib — that are becoming available almost daily. For that, I thank God in heaven above and all of the amazing, dedicated scientists whose work is saving more and more lives every day.

I had a few hours of terror and trembling and crying. But through it all, with the help of my breast care surgeon, clinical trials staff and my AMAZING oncologist Dr. Dana Zakalik, I have learned that despite the “staging numbers” that sent me into a downward spiral with an expectation that the Grim Reaper was waiting outside the Examining Room door, I actually have a very good chance of long-term survival. I am a candidate for the PARP Inhibitor (Iniparib), which will be used in combination with two chemotherapy drugs: Gemcitabine and Carboplatin. Because Iniparib is still in the clinical trial phase, my name will be submitted into a national pool today. Names are drawn weekly, but at Royal Oak Beaumont, the 12 women who have needed this drug have all been able to get it through the pool, and the expectation is that it will also be available to me very soon.

I will sign the consent forms to partipate in this clinical trial before I go in for my lung biopsy this morning. That means that I will get in under the deadline for this week’s drawing and will hear back either Weds. or Thurs. as to whether or not my name has been drawn. If it has, I start the Iniparib next Tuesday. If not, I’ll be in the drawing each week until my name is selected. In the meantime, I will begin chemotherapy with the G & C drugs on Friday, and will also have a chemo port inserted Friday morning. I never thought I could say this about chemotherapy, but I cannot wait to get started.

Dr. Zakalik has explained to me that breast cancer is becoming less of a killer and more of a lifetime, manageable disease. I hope and pray I fall into the latter category. I truly have found peace in this overnight. I feel a peace that I am going to be OK, that I am going to survive this. Not a false hope, but a warm, emcompassing white light that comes from somewhere outside of me and shines into the depths of my soul.

Please pray for the negative result on the lung biopsy and that my name is chosen in this week’s Iniparib drawing.

.





The Cause is Plenty of Reason for the Bras

17 09 2010


Tomorrow evening, I’m going to stand up in front of a crowd of 1,000 people at the Royal Oak Music Theatre in my bra.

Before you begin thinking that this is not reality, but perhaps an anxiety-provoked nightmare — let me explain. It’s a very special bra, it’s for a great cause, and I won’t be the only one.

Saturday night is the second annual Bras for a Cause event, featuring Art Bras modeled by breast cancer survivors. There will be 22 of us modeling the 70 Art Bras donated by local celebrities, artisans, survivors and their family and friends. Last year’s event raised a whopping $50,000 for Gilda’s Club of Metro Detroit.

I was going to wear one of the bras that had already been created. Then, I had an idea.

I was sitting around one day thinking about DNA and the double helix — everyone does this from time to time, right? — when it hit me. I could design a bra featuring the double helix!

Great Idea. Now, how to get it from my head and onto a brassiere? Enter my mother-in-law, Margaret Neilson, also a breast cancer survivor and one smart cookie.

I showed her my idea on paper and within a couple of days, she had created the pattern and sewn the beads onto a bra in the shape of the Double Helix. Then, she and I added red feathers from a boa, sequins, test tubes I’d ordered from an online lab (they probably think they’ve got a new customer!), and red trim.

Wallah! One DNA double-helix bra!

But the wheels in my brain couldn’t stop turning. The bra was the beginning of a Science theme — complete with lab coat, Geek glasses (I found them in the Geek section at the Halloween store!), a five-foot-tall inflatable DNA double-helix beach toy, and music choice: Thomas Dolby’s Blinded Me With Science. Not only am I a science geek, but this theme is particularly meaningful to me as the form of breast cancer I carry is indeed in my genes — identified as the Breast Cancer 1 gene (BRCA 1).

It was an exhilirating moment when we hot-glued the last of the trim on the bra and held it up. Then, I began to worry.

I worried about how I’d look on stage. I’m not model thin. Then I happened across the words from some of last year’s models, reminding me of what I already know: It’s not about being model thin. It’s a celebration of life — beating breast cancer and coming out on the other side healthy enough to create such a bra — and model it in front of 1,000 people.

Through a silent and live auction of the bras as well as items donated by businesses and celebrities (think autographed Red Wings’ jerseys!), as well as through ticket sales (100 percent of proceeds go to the charity), I’m playing a small part in raising money to support other young people diagnosed with the disease in their 20s and 30s.

And that is plenty of reason to strut a runway in a bra!





Rapunzel…Let Down Your Hair!

27 02 2010

Me, sporting one of my wigs and a crown of flowers, with Theo at the 2006 Gaylord, Mich. Alpenfest

It took me nearly four years, but I finally did it. Yesterday. I donated all of the wigs, bandanas and a knit cap I wore when I was going through chemo. It wasn’t as easy as it sounds.

I came across them a couple of months ago, when I was cleaning out my closet. There was the wig with the long, thick blonde hair that I’d sometimes pull up into a ponytail or through the back of a baseball cap, the shoulder-length one with soft waves that had fooled everyone at my high school reunion, the sexy Marilyn Monroe platinum blonde one that I wore when I was feeling well enough for a night on the town.

As I searched a little farther back on the shelf, I saw all of the bandanas my cousin Christine had made for me — the wedgewood blue one covered in tiny silver stars, the bright yellow one with jewels sewn in the shape of flowers, the breast-cancer-ribbon pink one, and my favorite — the tie-dye one. At the very back, I came across the sable knit cap my friend Maureen had knitted for me over the course of the cold winter weekend when I’d first received my diagnosis. I took everything off of the shelf, packed it carefully and set it aside. I’d bring it with me to my next appointment at the Beaumont Breast Care Center.

Yesterday morning, I grabbed the bag and threw it in the car. I was off for my quarterly blood draw.

After my appointment, I stopped by the Resource Center. That’s where I met Ruth, the soft-spoken woman with the silver hair who oversees the Center.

“I thought maybe someone else could use these,” I said. As I opened the bag and began unpacking its contents, I found myself sharing moments from 2006. “I wore this tie-dyed bandana to a Tigers game in June, and here’s the wig I wore to my high school reunion. It did the trick — no one even realized I was going through chemo.

“This one — well, it made me feel sexy when my husband and I were out celebrating our 7th wedding annivesary,” I continued. “And surely someone could use this knit cap in weather like this,” I said, thinking of an older, bald-headed woman being pushed in a wheelchair I’d seen in the Cancer Center just a few minutes earlier.

Ruth listened intently and patiently as I made my way down to the bottom of the bag. There was a brief silence and then I looked into her eyes and, by way of explanation, said, “I’ve had this stuff for four years now, and I meant to donate it sooner. But I guess I was afraid to — afraid, somehow, that I’d be tempting fate.”

Ruth put her hand over mine, nodded gently and said, “Lots of women feel that way.”

I told her that I’d be celebrating my fourth anniversary cancer-free on March 3, 2010, and that I was finally beginning to feel a little more secure, a little more sure that I was going to be OK.

“I won’t be needing these anymore,” I said, perhaps more to myself than to her. I turned then, leaving everything sprawled on the table in her office,

The bandanas, the wigs, the knit cap have a job to do for other women who are going through what I once did, not so long ago. It was time for me — and for them — to move on.





Oh Baby! Do We Dare Go For #2? (Part I)

21 05 2009
Theo, October 2005, age six months

Theo, October 2005, age six months

Ever seen that list that shrinks pull out when you’re stressed to the max? It’s about the length of a medieval scroll and on it is the list of life’s biggest stressors — the ones that probably landed you on the couch in their office in the first place.

There are the life events that you can’t control — like the serious illness or death of someone close to you. Then there are the ones that you can control, the ones that are considered “happy” stressors — like getting married, buying a house, getting a new job — and yes, having a baby.

If the thought of becoming a parent has ever seriously crossed your mind, you are familiar with the barrage of questions that filter through your gray matter day and night — particularly when you can’t sleep. Or perhaps they’re the reason you’ve got insomnia.
Will I be a good parent? Can we afford it? Does this new creature come with an instruction manual?

When you’ve been identified as a carrier of a breast cancer gene (BRCA 1 or BRCA 1), there’s a second list of questions you have to answer — even more so if you’re a survivor. At the top of the list is this one:
Could a pregnancy trigger a recurrence?

When my sister, Julie, who was diagnosed with breast cancer at the age of 26, posed this question post-treatment, the doctors felt quite confident that it could — and discouraged her from considering the idea. But that was twenty-some years ago, and a lot has changed.

Conventional wisdom — based on the brave women who not only went on to have babies post treatment, but volunteered for medical research studies — tells us that survivors who go on to have a baby do not have a higher risk of recurrence than those who don’t. In fact, for some reason that the medical community cannot put its finger on, these women actually have a slightly lower risk of recurrence. Go figure. If you want to find out more, check out the study:
http://www.thebreastsite.com/breast-cancer/pregnancy.aspx

So, we have the answer to the first of many questions we need to answer, with brutal honesty, before we make our decision. Next up is perhaps the toughest question of them all:
Is it ethical?








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