About Amy

Avatar_632490About Amy Rauch Neilson

Since I was eight years old, I knew I was a writer. I followed a very predictable path to realizing my dream — a bachelor’s in journalism, several years writing for newspapers, magazines, and then in the age of the Internet, websites, a master’s degree in Creative Non-Fiction.

But all this time, I tried to deny what I knew was a big part of what I’d been put on this earth to do — provide as much real, no-holds-barred information for women with breast cancer, and in particular, those who carry the BRCA 1 or BRCA 2 breast cancer genes — as I could.

From the time I was a teenager, I felt God urging me to write about breast cancer. Sometimes, the feeling would be so strong that I’d look up at the sky, throw up my hands and say, “But WHAT in the world would I write about? Everything that there is to say about breast cancer has been said!”

Besides, I didn’t want to spend my days writing about breast cancer. That would mean I’d have to think about this disease — the one that took my grandmother’s life at the age of 46, the one my mom battled for 19 years before succumbing at age 53, the one that caught my sister Julie off guard at age 26.

But, then, it happened. Six months after delivering my son, I was diagnosed with breast cancer and subsequently identified as a carrier of the BRCA 1 gene. A short time later, during a conversation with my oncologist, Dr. Dana Zakalik, God dropped me yet another hint. “There’s a lot of information out there about breast cancer in general,” she told me. “But very little information about genetic breast cancer.”

Was I crazy to think that God was guiding me in this direction? I thought to myself on more than one occasion. Finally, one Sunday night in November 2008, just before I drifted off to sleep, I prayed this prayer: God, if I am not crazy and this really is what you want me to be doing, please give me a sign that I can’t shrug off as coincidence.

The next morning, as I gathered my son’s sippy cup and dressed him for preschool, my husband said to me, “I’ll take him today, honey.”

That was the first in a series of events that morning that changed everything. First, my husband decided to take our son to school. Then, I was trying to find a shirt to wear and all I could come up with was my T-shirt, which reads: Yes! They’re Fake! My Real Ones Tried to Kill Me! I knew I wouldn’t be seeing any clients that day — so I threw it on and headed out the door.

On the way to the office, I decided to stop for gas. I never do that in the morning. Then, as I was standing at the pump, I noticed a new coffee shop in the strip mall adjacent to the gas station. “Hmm,” I thought to myself. “I ought to give that place a try.”

As I was standing in line five minutes later, waiting to order a Cafe Mocha, the young man behind me tapped me on the shoulder. “Excuse me,” he said. “I couldn’t help but notice your shirt.”

And then he just started talking. His 28-year-old wife, Leza, had just been diagnosed with breast cancer. She was from Albania and had only been here a short while. She’d come to the United States when her sister was diagnosed with breast cancer, but by the time they reached New York and sought treatment, it was too late. They thought it was genetic. “We just wish there was a book out there, something that could help us, guide us through this whole thing,” he said finally.

There was no denying it this time. I had, after all, asked God for a sign that I couldn’t possibly shrug off.

In the days and weeks that followed, I talked with Leza and her husband, Tony, a number of times. I shared what I knew, I offered her support, I gave her hope. I did what I knew I was put here to do. And I realized that, more than anything else ever before in my life, it was what I wanted to do.

God had given me the gift of writing and part of His intent was for me to use it to spread as much information as possible on the topic of genetic breast cancer. For the carriers. And their families. And their friends.

Because genetic breast cancer IS different. Women who carry one of the two genes that have been identified so far have some tough decisions to make that their non-genetic breast cancer counterparts do not. Decisions like: Should I have a double mastectomy to significantly lower my risk of breast cancer? Knowing I carry this gene, should I have kids? If I am diagnosed and need chemo, should I go through in-vitro so that I can have kids later on? I know I carry a secondary risk of ovarian cancer and that I should have my ovaries removed. But when?

These are the questions that I — and every other carrier — face. I certainly don’t have all of the answers — or even most of them. What I do have are real-life experiences — the pain, the grit, the will, the determination, and yes, even the humor — to share. And I’m willing to do that, to tell it like it is, to bare my soul, in the hopes that it will reach the many Lezas who are out there, somewhere.

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26 responses

15 05 2009
Meaux

Well…I love it. I love reading your writing. And I love you. Good work.

16 05 2009
Kristi

Great expression of yourself. Your emotions, both sensitive and funny, shine through……..continue doing what you do best!

21 05 2009
Kate

Wonderful blog Amy. You truly have a way with words. You write what you feel and its a gift. Keep it going. Love you.

30 05 2009
Jennifer Fink

I just found your blog — belatedly — through the May Blogathon. (I’m participating too). And I can’t believe I haven’t found you before. Genetic breast cancer is in my family too. BRCA2. No solid decisions made yet, but the time is coming.

All the best,
Jenny
http://www.bloggingboutboys.blogspot.com

10 08 2009
Lauren

hello – i found your blog through blogcatalog (i was looking for others blogging about cancer like i do). my family is in the process of getting genetic testing done for several different things. i was diagnosed with hodgkin’s a couple of months ago, my mom had breast cancer 10 years ago, and my little brother had two different types of bone cancer when he was younger. i’ve tested negative for several genetic syndromes, and my mom is getting tested for breast cancer genes tomorrow. i wanted to let you know that i think your blog is very helpful, especially if my mom’s test comes back positive and i end up getting tested. you have a wonderful way with words.

Lauren

7 10 2009
Amy

Am finally visiting your blog, Amy. I love it! Keep up the good work.

Amy

31 01 2011
Francine Knowles

Amy –
Friend of Patti M.’s – she told me of your journey and your blog. My families prayers are with you and may the Holy Mother Herself keep you near her and bless you through your surgery and beyond.
God Bless – Francine K.

31 01 2011
Nancy

Thanks for sharing your story. I had breast cancer 10 years ago, thought it was gone — came back and I am going through all the treatment again <<>>. Now I have learned that I also have thyroid cancer. Just beginning to participate in genetic counseling…it will be interesting to see what I learn. Some of the decisions I face are less urgent than yours because I am much older — well beyond child-bearing years– but obtaining information and sharing it with family is still very important.

31 01 2011
Belkis

2 02 2011
Laurie Alpers

My heart reaches out to you. LOVE your can-do spirit. You go girl! I’m BRCA1, 6-year survivor with a daughter that tested positive with the gene. She is struggling months after finding out. But, reading your blog, it reinforces that knowledge is power. We know that, but it’s still tough to put your arms around it all. All the best in your journey…

2 02 2011
Vaibhav Bawa

I feel a little ignorant giving you any advice without reading through your blog but this is the best I can do for you right now. Time is the key here. If you haven’t heard of the Gerson Treatment yet, I would urge you to check it out. It’s been around for over 60 years, only never got into the mainstream cancer treatment due to commercial interests of the pharma industry. I am certain it would be worth your while to at least get familiarized with it, whether or not you decide to pursue it.
Check out gerson.org if you’d like to know more. Check out their facebook page at http://www.facebook.com/GersonInstitute
All the Best!

3 02 2011
Norma Shenesky

Keep the faith and do your research so that you can make intelligent decisions.

4 02 2011
PAT JACOT

THIS IS A GREAT CONTRIBUTION TOWARDS THE FIGHT FOR BREAST CANCER. THANK YOU FOR BEING THE TALENTED WRITER AND CARING PERSON YOU ARE. YOU DEFINITELY HAVE MY SUPPORT. WRITE THAT BOOK!

6 02 2011
Ken Dupay

We lost my oldest sister in 1983 at the age of 37. I do not know if hers was genetic or not. She was the only one of us three siblings to have children. To date, neither of her daughters have been diagnosed with breast cancer.

Best wishes with getting your book published to keep pushing the awareness of this cruel disease.

7 02 2011
Sherri Novis

Here is a must watch link on Vit D and combating cancer: http://www.youtube.com/watch?v=TQ-qekFoi-o

On Budwig and diet – thank you Dori. Aims – was going to share similar info. Recently learned that high carbohydrate diets interefere with your sleep patterns – specifically the fourth state of sleep (when your brain emits the most delta waves). It is the deepest and most physically and psychically restorative stage of sleep, and is necessary to achieve edochrine (hormone) rebalancing in the body. For the general population reading this, alcohol messes with this sleep stage as well. Two drinks before bed will rob you of delta sleep.

The body goes through 5 stages of sleep (a 90 minute cycle), that repeat throughout the night. They’ve also just discoved that we dream in delta sleep too, not just REM.

Taking as much care of your sleep cycle as possible will help your body and your mind.

[Sugar in the morning makes it 10X harder not to over-eat and eat sugar all day… so if you need sugar snacks, middle of the day is when to have them.]

Some things that help sleep hygiene: No electromagnetic exposure before sleep (no TVs, laptops, even electric blankets can intefere with your bodies bio-rhythms). No lights at night – only dim, or red light. Melatonin (as you know) can reset your circadiam rhythms. If your body does not need it, it does no harm. Humans are supposed to take naps in the afternoon. We are the only specied with circadian rhythms that dip about 3, that do not sleep at this time. Pretend you are spanish and take your ciesta if you can!

Also, as Dori said, 15 minutes of mid-day sun exposure will help your body replentish seratonin – however it has to hit your retina, so no sun glasses. Just walk outside will do.

Also, vitamin D suppliments – (you need more than in calcium suppliments). It is important to drink lots and lots of water when you are taking vitamin D suppliments, because they can contribute to calcium build up in your urine.

Health, wellness and healing –
Love,
s

7 02 2011
Evelyn

Thank you for sharing your story!

8 02 2011
Sue

Hi Amy,

Just found out about your blog from Crystal S. Thanks so much for sharing your very personal story to help others!! I have enjoyed reading a lot of your blog tonight. I would just like for you to know that I will be praying for you, your family & your friends each & every single day….not only for your strength in handling your treatment, but, for your total remission & your survival!! May God always be with you. Keep the positive attitude! Love the humor you put in your blogs, too. Looking forward to reading your BOOK, someday!!

19 02 2011
Janine

Hi Amy,
I am 40yrs old, and a BRCA1 Breast Cancer Survivor. For some reason, I’ve been having a tough time lately…with my emotions and all. Maybe it’s just because I’m coming up on the one year anniversary of my BC diagnosis…who knows. But anyway, just stumbled upon your blog through FORCE. I love your writing style and I’m looking forward to getting my hands on the book 🙂

Wishing you the very best,
Janine

24 02 2011
Riley

I hope your book gets published. My whole family does. (:
My mom’s sister knows you, leading to my mom interviewing you for her blog. We’re all hoping for the best! (; (; (;
–Best wishes,
R.T.S.

5 03 2011
Kelly Millard

Amy – I have been reading your website and all about your strength and courage. I wanted you to know that your story has really touched my heart and that you will remain in my thoughts and prayers. You are so incredibly brave! I hope that your book gets to publication because it would give strength to so many!
Warm Blessings!
Kelly

11 03 2011
Carrie

Amy, one of the things I have admired most about you (even before the latest diagnosis) is that you LIVE; you LIVE LIFE in the moment (the good and not so good…), you don’t seem to take the small joys for granted (like most of us do…), and your writting reminds me that we all overcome our tragedies; however, I think more of us need to celebrate our triumphs (even the little ones), like you do. You truly do inspire! You have a gift, and, I for one, am happy that you share it with us. Wear your dancing shoes and celebrate lifes joys – big and small!

27 10 2011
Lynn

Amy,

I just found your blog and I can certainly relate. I was diagnosed with stage 3 ovarian cancer in December 2009 at the age of 46. I had genetic testing done and I came back negative for BRAC1 and 2, which didn’t really surprise me because there’s no history of cancer in my family.

Which PARP inhibitor are you on? I’m currently in a drug trial for AMG 386–an anti-angiogenic. I get it weekly with topotecan, a chemo drug. I’ve had six months of normal CT scans, but my ca125 tumor marker is still elevated (which I’m not particularly worried about anymore). Except for some fairly minor side effects of the drugs, I feel well.

I write two blogs:
http://livingwithovariancancer.wordpress.com/
and
http://effortlesshealthyeating.wordpress.com/
which I started after becoming a vegetarian last February.

-Lynn

21 11 2011
Dr. Chris Niedzinski

Amy, I read the article yesterday in the news. I would like to help. My company has had many successes with dealing with cancer and even it’s reversal. At this point would you be willing to at least hear another approach that will do nothing but help you? You never know unless you take that leap of faith. Please call 2483490300.
Maximum Blessings, DC

21 11 2011
David Veselenak

Hi Amy,
This is David Veselenak from Heritage Media, the chain of newspapers based in Saline which includes the Belleville View. I just read the story on you in the Detroit Free Press, and was curious if we could link to your blog on heritage.com/blogs. All we would do is link to the most recent posts on your site through RSS and display a photo, title and description of your blog. If you’re interested, I’d love to add your blog, it’s definitely an inspiring read. Feel free to email me at dveselenak@heritage.com and I’d love to list this site.

Thanks!

16 12 2011
mlsspaskvan

Found you! Thanks for following my blog, TNBC, I Won’t Back Down… like you, I’m trying to get the word out on Triple Negative Breast Cancer, not enough people know about this subtype and is striking younger woman. It was your calling to write about BRCA genetic breast cancer and I pray that your new treatment plan gives you hope to keep fighting. By chance are you from the Toledo area… You mentioned a letter from your childhood friend, Marne Leonard. There was a Marne Leonard from my childhood neighborhood area. Take care and I wish you happiness for the holidays.
Melissa
mlsspaskvan.blogspot.com

2 05 2012
Facing Cancer (@cancer2gether)

Just found your blog, Amy. If it’s as good as your bio than I look forward to some heart-felt readings. Good luck on your mission to spread the word about BRCA. I’ve met other women in your situation, and they too are trying to help others through the difficult moments. If you’d ever like to connect they’re at FacingCancer.ca page. Otherwise just keep writing. Each post makes a difference. 🙂

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