IMs from God?

30 06 2011

This little box of Theo's reflected a mysterious rainbow. Photo by Amy Rauch Neilson.

I was crying when I called my sister-in-law Carrie the other day. A couple of months ago, she made me a CD mix to get me through the toughest moments. The very first song is Katy Perry’s Fireworks. Carrie picked that one because she knows the Fourth of July is my favorite holiday. And she loves the lyrics.

When I called her the other day, I said, through sniffles and sobs, “What if there’s only a hurricane for me, and no rainbow?”

Without hesitation, she said, “The rainbow is already out there, sweetie. You just can’t see it yet.”

“Promise?”

“Promise.”

She knew I was referring to these lyrics:

After a hurricane comes a rainbow

Maybe your reason why all the doors are closed

So you could open one that leads you to the perfect road

We talked a lot about that rainbow, the one that will appear after I make it through the hurricane-force winds that blew into my life following my Stage 4 breast cancer diagnosis in January.

My fear, I told her, is that after the hurricane, there isn’t going to be a rainbow. Just devastation.

But Carrie won’t hear of this. She doesn’t tell me there’s a rainbow out there because it’s what she thinks I want to hear. She tells me this because she believes it to the very depths of her soul. Never, she says, has she been so certain of something.

This calmed me and after a few minutes, I was able to pull myself back together. I had to. Theo was at summer camp and it was time to go and pick him up.

As I was backing out of our driveway, our neighbor, Dave, walked up to my car. I rolled down the driver-side window, offered him a handful of Cheez-Its. He looked at me and said, “I saw you the other day. You weren’t looking very happy.”

We share a narrow, one-lane road with three other houses, a straight path that leads to the lake like a spoke on a wheel. It’s a private road, which means our mailboxes are at the end, where our street meets the service drive. So, getting the mail means a tenth of a mile trek to the end.

As I was scrolling through the moments when Dave might have observed me, I thought about a day last week when it was dreary and drizzling and I’d made the trek for the mail. The neighborhood was quiet; the kids inside doing puzzles or watching movies on a rainy summer day. A few tears on my cheeks could easily be mistaken for raindrops, should anyone cast a glance out the window.

I was just having a moment. And Dave, who has lived next door for the dozen years since we moved in, reads me well.

“You weren’t looking too happy when I saw you last week,” he said.

I looked him in the eyes and said, “I’m afraid…” But I couldn’t finish. I waited a minute, then tried again.

“I’m afraid I’m going to die,” I said, this time staring straight at the steering wheel.

“You’re not going to die,” Dave said. “You’re going to outlive me.

“You have changed the way I think. You don’t realize how much you influence people, how what you say and do changes the way they think. That’s really powerful.”

I thought about that for a minute, trying to figure out what I do or say that makes that big of an impact. Then I took his words and deposited them into my heart.

Earlier in the day, I’d come across this little box filled with shark’s teeth at a gift shop. I thought of Theo and knew it’d be two bucks well spent. I gave it to him when I picked him up at camp. He was ecstatic and for the rest of the day; it was like nothing else existed save this little, tooth-filled clear plastic box.

Then the strangest thing happened. I was making dinner and Theo called me into the family room.

“Look, Mommy,” he said, pointing to the lid of his little box. “There’s a rainbow.”

Indeed there was. The plastic lid of this tiny box was acting as a prism to the light streaming in through the windows, reflecting the colors and shape of a rainbow. What were the chances, on this day, at this moment, in this way? If the conversation with Dave, the observation by Theo, are not Instant Messages from God, then what are they? Dave said my words and actions are powerful, but they pale in comparison to the messages coming from above.

Maybe all the doors closed so God could lead me to the perfect road.

And yes, I do believe there will be a rainbow.

Copyright 2011, Amy Rauch Neilson





Let’s Talk About You

29 06 2011

A few weeks ago, one of my lifelong best friends called. We chatted about the usual stuff – the kids, the weather, our summer plans. She, of course, also asked me how I’m feeling, how I’m managing my chemotherapy treatments and schedule. Then there was a pause and she said, “I have something to tell you, but I’m not sure if I should.”

I was a bit nervous but still, whatever it was, I wanted to know.

“Yes, of course tell me,” I said. “Please.”

She told me her Dad had been recently diagnosed with cancer and would soon be starting treatment. She’d known for about two weeks, but hadn’t known if she should tell me.

Under ordinary circumstances – as in prior to my recent breast cancer diagnosis – she would have called me right away. But that I was in the midst of fighting my own battle with this disease had called it into question. She’d even discussed it with her sister, whom I also know well: When should they tell me? I’ve been close to my friend and her family since we met in Kindergarten – 30-some years ago.

I can understand the hesitation, the love and concern, the thought that she didn’t want to add anything more to my already very full plate. But not only do I get tired of talking about me, my diagnosis, my treatments, quite honestly, I want to hear about my friends’ lives, what they’re facing, their challenges as well as their joys. It helps me to feel “normal” at a time when my life is anything but.

Several times since my January diagnosis, friends have kept a lid on something big going on in their lives, be it marital troubles, problems at work, a concern about a child. They’re coming from the right place, with the best of intentions.

But it’s important for them to know that I want to know. I want to be “kept in the loop.” I care deeply.

Friendship is a two-way street, even when one of you is facing a life crisis like a cancer diagnosis. Especially then.

For more of my blog posts, visit The Pink Fund.

Copyright 2011, Amy Rauch Neilson





Let’s Be In It to End It

27 06 2011

I often hear this question come up in conversation: Is all that money that is being raised for breast cancer really making a difference?

The quantitative answer would require digging into statistics and the like. But from my personal vantage point — which I often liken to standing on the edge of the Grand Canyon and looking down — the answer is an emphatic YES!

While being on the receiving end of a cancer diagnosis is never the place anyone wants to be, I’ve been told more than once that if I have to have cancer, breast cancer is the one to have. There are more research dollars and treatment options for breast cancer than any other type. And the progress — oh the progress! Treatment options, my doctor often reminds me, change in weeks and months, not years.

I know that the three drugs I’m on didn’t even exist four years ago. Human trials for the experimental drug I’m taking — the PARP inhibitor — began just last year.

In my quiet moments, I’ve often wondered if we’re ever going to Find the Cure. I truly believe that we are, and that we’re not far off. Football star Brian Picolo (Brian’s Song) succumbed to testicular cancer because there simply wasn’t a treatment available in his time that could cure him. What a heartbreak.

Years later, Lance Armstrong was diagnosed with Stage 4 testicular cancer — and with the benefit of new, platinum-based chemotherapy drugs, he was cured. I asked one of my doctors about this a few weeks ago and she told me that yes indeed, Stage 4 testicular cancer is now curable.

Stage 4 breast cancer — what I’m battling right now — is not curable. Not yet. But I believe that if it can happen for testicular cancer, it can and will happen for breast cancer. We need to keep the faith, keep moving toward that ultimate goal of a cure. I see it every day, on a very personal level.

The weekend of August 12-14, three of my friends will be taking on the challenge of The Susan G. Komen Breast Cancer Three Day: Marybeth Greene, Jennifer Amprim Wolf and Trish Baden MacDonald. That’s 20 miles a day — 60 miles total. They walk by day and camp out at night, getting in a little shut-eye and reenergizing, rehydrating so they are ready to take on the challenge again the next morning. I’ve not yet been able to participate in the Three Day, but I hope I can someday. I’ve heard it’s rewarding, but also, grueling.

I’ve seen first-hand what these women do in honor and memory of the loved ones who have been diagnosed with breast cancer. Daily walking schedules of miles and miles, months and months in advance, to get themselves ready. Special shoes to endure that kind of mileage — not to mention researching the kind of socks that will get them through those three long, often very hot days. A month or so ago, Jennifer and I had a long discussion about socks. Yes, socks. Success in this challenge is indeed in the details.

On top of all that, there’s the fundraising arm of the Three Day. In order to participate in the walk, these breast cancer warriors not only need to begin training many months in advance, but they each need to raise $2,300. While Marybeth has already met her goal, Jennifer and Trish still need financial support. With the walk just six weeks away, we haven’t hit the panic button yet, but we’re not too far off. Jennifer is about half-way to her goal; Trish about 40 percent.

So, I’m going to do something I haven’t done before on my blog. If you’ve been thinking of making a donation toward finding the cure for breast cancer, consider supporting my friends Jennifer Amprim Wolf and Trish Baden MacDonald in the Breast Cancer Three Day. They’re both walking in honor of me, as well as in honor and memory of others who are fighting or have fought this battle.

Many times, people tell me they can’t go anywhere without running into someone who has been touched by breast cancer in one way or another.

We’re all in this together. Let’s be in it to end it.

(To donate on behalf of either Jennifer or Trish, visit their Three Day homepages by clicking on their names above. I’m on my way there now.)

Copyright 2011, Amy Rauch Neilson





Is Breast Cancer Inevitable for Women with the BRCA1 Gene?

21 06 2011

genetic breast cancer, brca 1, brca 2, chromosome 17, triple negative

Editor’s Note: This Blog post, written by Amy Rauch Neilson, is reprinted with permission from the GE Healthymagination site. It appeared there originally on June 21, 2011 at 12:00 p.m.

Is a breast cancer diagnosis inevitable?

For women who are carriers of the BRCA 1 (breast cancer) gene, it is so close to an absolute certainty that to learn you are positive for the mutation is nearly as terrifying as a breast cancer diagnosis itself.

The BRCA 1 gene, discovered in the mid-1990s on Chromosome 17, like its sister, BRCA 2, is a tough opponent. Women who carry either mutation have up to an 85 percent lifetime risk of breast cancer. As if that weren’t enough, there’s also an increased risk – up to 60 percent, depending on the mutation — of ovarian cancer.

Reading the statistics is one thing. But the reality hits home when it happens in your family. Over and over again. As it has in mine.

My grandmother died in 1948 at the age of 46 of what her doctors described as a “female cancer.” My mother was diagnosed with breast cancer in 1973, at the age of 34, and battled metastases for 19 years before succumbing to cancer in 1992. My sister Julie – a two-time survivor — was first diagnosed in 1985 at age 26.

The gene mutation is more prevalent than many people realize. According to FORCE, a national non-profit foundation for individuals and families affected by hereditary breast and ovarian cancer, experts estimate that, in the general population, one in every 300 to 500 people harbors a BRCA mutation.

The discovery of the gene mutation and subsequent testing available to women with a strong family history of breast and/or ovarian cancer has armed our generation with a powerful tool: Prevention.

Women with this gene can significantly reduce their chances of a cancer diagnosis by ridding themselves of the body parts where this gene mutation fires up – breast and ovarian tissue. That’s what I decided to do. I was in the midst of being tested for the gene in early 2006 when I discovered a lump the size of a blueberry in my left breast. Even though my tumor was a Stage 1 and I could have opted for what is known as “breast-conserving” surgery – a lumpectomy – when I learned I was positive for the BRCA 1 gene, I instead chose the more radical double-mastectomy.

But even that, sometimes, isn’t enough.

On January 9, 2011, I discovered a hard lump the size of a shooter marble wedged between my left breast implant and my reconstructed “fake” left nipple. Three days later, I was diagnosed with breast cancer once again. This was not a recurrence, but a new primary. Even worse, subsequent testing showed that this time, I am a Stage 4, as the breast cancer has spread through my lymph nodes and into my lungs.

Even though my decision to undergo a double-mastectomy had significantly reduced my chances of a second breast cancer, my gene mutation had indeed refired in the few healthy breast cells that the surgeons had left behind. According to the National Cancer Institute, “Existing data suggest that preventive mastectomy may significantly reduce (by about 90 percent) the chance of developing breast cancer in moderate- and high-risk women… Because it is impossible for a surgeon to remove all breast tissue, breast cancer can still develop in the small amount of remaining tissue.”

So often we think of medical science as a modern-day Superhero – able to fix any obstacle we face, no matter how harrowing.

I am currently undergoing chemotherapy treatment with two drugs that didn’t even exist when I was diagnosed with my first breast cancer in 2006. And I was fortunate to be selected to participate in a clinical trial which offers hope for breast cancer patients like myself who are diagnosed with the particularly hard-to-treat triple negative breast cancer.

But we still have a long way to go. In the meantime, prevention through self-breast exams and risk-reduction surgeries is still key.

Amy’s Bio, which appeared on the GE Healthymagination site: Guest blogger Amy Rauch Neilson is a freelance writer who specializes in personal finance and investing. Her work has appeared in national publications and websites including Better Investing Magazine, StockCentral.com, BizActions.com, The Detroit News, Efinancialcareers .com, Pages Magazine, and USA Today, among others. She is putting the finishing touches on her memoir, No Safe Place, about the four generations of women in her family who have been identified as carriers of the BRCA 1 gene. Her blog, http://www.itsinthegenes.org, has subscribers from 17 countries and all 50 states.





Will There Ever Be a Time Again…

18 06 2011

When every day will seem normal again, and not life-or-death? When my biggest decision will be water park or sprinkler park with my son on a hot summer’s day? Free of days when I must choose to get treatment and give myself shots that will cause severe bone pain, which is far better than the other choice — no treatment at all and the unthinkable consequences that would follow?

Will there every come a time again when it’ll be second nature to be able to do the things that make us human, that make us feel normal, like get frustrated when someone cuts us off in traffic or worry about something a client said? To wonder how I’m going to squeeze in stopping for a gallon of milk or how we’ll scrape together the cash for something we really need?

I am not even sure sometimes that I know or even recall, after just a few months of enduring the terror of and treatment for a Stage 4 cancer diagnosis, what normal is, but I do know that I want it back.

Copyright 2011, Amy Rauch Neilson





Let’s Party in Pink — Tomorrow!

15 06 2011

Howell's Annual Pink Party is TOMORROW! Photo (from the 2010 celebration) courtesy of Becky Cwiek.

Tomorrow’s the night. The Big Event in Howell, Michigan: The Pink Party!

It’s just a 45 minute or so ride for me. I’ll be picking up my bff Kristi Rugh Kahl on the way. (How, she wonders, does she always get roped into these things? Ah, the duties of long-term friendship).

We’ll be shopping the downtown, which is open for Pink Party attendees and many shops and restaurants are offering free food (free food always gets ’em), and discounts on purchases.

Well, if you’re in the area or can make it to Howell, you’re in for a very good time. The party goes from 5 – 10 p.m.

Plus, I’ll be addressing the crowd at about 7:15, following the Queen’s Parade. And Lord only knows what I might say if you give me a microphone and a captive audience!

Some info on the event:

The Pink Party is an after hours, town wide ticketed event for retail shops to help raise funds for a great cause, invigorate a small downtown and strengthen our sense of community. 100% of ticket price will be donated to the Susan G. Komen fund and the Michigan Breast Cancer Coalition. Tickets can be purchased in advanced for $25 at participating businesses.

Your ticket includes:

• A generous discount at participating retail stores

• Food and Wine Tasting

• Pink Flamingo Silent Auction

• Bras for a Cause Auction

• Massage Stations (My personal favorite!)

• Queen of the Night Awards for Most Creative Pink Outfit

• Festive Party-like atmosphere throughout town

• Event Laminate

• Art exhibit

• Roaming entertainment

• Belly dancing

And no, I’m not belly dancing, either! Maybe next year…

If you do make it out there, please find me and say hi! I’ll also be handing out free It’s In the Genes bracelets, while supplies last…

Copyright 2010, Amy Rauch Neilson





Status: Chemo Bound

14 06 2011

On my way to chemo today for the beginning of Round 7. It sounds like a boxing match and really, it is one.

My bff Jennifer Voisin Murray is picking me up. We go all the way back to junior high.

We are stopping for breakfast on the way. Hey, if I gotta do this, I might as well enjoy my friend and eat a ham and cheese omelette on the way!

Theo wanted me to take him to school this morning. I explained that I couldn’t; that Jennifer was picking me up as I had to go to the doctor’s today to get medicine. He said, “But I want to be with you tonight.” He knows that chemo often means I am down for the count for the rest of the day, often in the guest bedroom because I feel so horrible.

That’s a chemo translation from the world of a five-year-old.

I promised him that we will be together this evening, and I will make good on that promise.

Copyright 2011, Amy Rauch Neilson








%d bloggers like this: