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.

.





Guest Post: Gene Positive Status is Not a Life Sentence

4 02 2010

Editor’s Note: The first email I opened this morning was from across the pond, written by a young woman who had just received news of her BRCA 2 positive status. Her words are so poignant, so valuable, that I wrote to her immediately and asked if I could share them as a Guest Post. With Natalie’s blessing, here they are:

by Natalie

I received the results of my test today – and I carry the BRCA2 gene. I guess I knew I did, although until this morning I still lived with that tension between being resigned to the fact that I probably did have the gene, and that secret, guilty hope that I might not. The probability having been 50/50, I always had that image of a coin flipping, or Schrodinger’s cat, and imagined myself getting either the good, or bad, news, and my two very different reactions.

I’m 29, my mother first got cancer when I was 11 (when she was 39), so the time for me to start the process of preventative treatment is now. I’m British and I live and work in Spain, and the one thing that shocks me, culturally, reading the posts on this blog, is the additional stress that these women have to go through regarding what the insurance will or will not pay for. Obviously health care is free in the UK and Spain and my mother, having had three separate cancers, is still alive, happy and strong and has never had to pay a single penny.

I also just happen to work as a researcher in a medical anthropology department and plan on writing a paper on the differences that my sister and I have encountered in the Spanish and British genetic testing services (genetic counselling is obligatory in the UK, whereas it is not offered here in Spain).

I plan to make further posts in the future and I’d be interested to hear about other peoples experiences of genetic testing etc.

Like my doctor said today, this is not a life sentence. There are actions we can take, and it is not the end of the world.

After writing this post, I’m starting to feel better already.





Guest Blog: BRCA2 and Don’t Know What to Do

10 06 2009
Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Please meet Jenny Fink, a BRCA 2 carrier, who pens Blogging ‘Bout Boys. (Check it out — I’m guest blogging over there tomorrow.)

Breast cancer has haunted me my entire life.

From the time I was little, I knew that breast cancer stalked my family. My maternal grandmother died of breast cancer when I was just five, and one of my maternal aunts had breast cancer sometime when I was a kid. I don’t remember the details, but I do remember my mom ducking into the bathroom to see her scar.

My own mother didn’t develop breast cancer until I was an adult, a married twenty-something living out-of-state. Still, I remember seeing my mother’s mastected breast, dyed green and slice for analysis. It’s not the kind of thing you forget. (My mother, a nurse, specifically asked to see the samples, and I was in the room when they wheeled them in.)

It wasn’t until she was diagnosed with ovarian cancer ten years later that we learned about our genetic mutation. Despite the fact that we knew we were at risk for breast cancer, no one had ever bothered to inform us that ovarian cancer is sometimes linked to hereditary breast cancer.

When we learned about the link between breast and ovarian cancer, I pushed for genetic testing. I’d had enough of health care professionals pushing my concerns under the rug. If I tested positive, I reasoned, I’d have absolute, solid proof of my risk status – and no one could ever again brush off my concerns by saying, “Yes, but has your sister had breast cancer?”

That was a little over two years ago. Finding out I had a BRCA2 mutation was really no big deal; strange as it may sound, for me, the bigger deal would have been finding out I was negative.

Doing something about it has proved to be a little harder.

First, I was nursing. My youngest child was not yet a year, and I was determined to breastfeed him to completion. Continued breastfeeding, I reasoned, was best for both of us.

Now, though, he’s been weaned for the better part of year. It’s time to schedule a screening, but our health insurance recently changed from full coverage to a high deductible ($5,000!) policy. I’d scheduled an appointment at the regional academic medical center to discuss screening and my options, but cancelled it when I realized I’d be paying out of pocket. My plan now is to wait til my annual physical (covered at 100%) and to ask my family doc to recommend a mammogram (which, I think, should also be covered.) As for the MRI I should probably have – well, I’m not sure how I’m going to pay for that just yet.

My situation is not unique. How many of you have a mutation, but limited insurance coverage?

I’m not sure yet what I’ll do regarding prevention; if I’ll try Tamoxifen (though I recently learned that some antidepressants basically disable Tamoxifen) or if I’ll schedule preventive surgery. The scary thing is that I’ve already calculated that surgery may be the cheaper route: if I decide on a prophylactic mastectomy and oophorectomy, I’m pretty sure I’ll meet my $5,000 deductible. If I simply decide to do screening each year… each year, I’ll have to pay $1,500 out-of-pocket for an MRI.

How do you cope financially? Has insurance coverage (or lack of coverage) influenced your healthcare choices?





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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