My BFF Swoops in from Germany

15 09 2011
My bff Jennifer Bopp Stegbauer, just in from Germany, visiting Theo’s classroom this morning. Jennifer and I were Theo’s age when we met! Photo by Amy Rauch Neilson.

What a treat! My bff Jennifer Bopp Stegbauer is in town and I had the joy of picking her up from the airport yesterday and she will be spending the day with me today.

First thing this morning, she accompanied me as I drove Theo to school. She got to peek inside his classroom, where he proudly showed her all around, introduced her to his teacher, Mrs. Sullivan, his friends, and showed her his learning materials. He is so excited about school — what a continuous happy square that is in our lives!
 
Jennifer, who speaks fluent German and French, was able to converse with Theo’s best friend, Kai, who also speaks fluent German. What fun! She also used the globe (above) to show Theo where she lives, and Theo, in turn, pointed out where we are! So cute!
 
We will be meeting our mutual friend and high school classmate Scott Orwig for lunch, then Jennifer will take me to chemotherapy this afternoon.
 
Tuesday’s dose was the first time I went through a round without Gemzar, so I got just the Carboplatin and PARP inhibitor. I had really hoped it would make a difference in how I felt afterwards. It turned out to be a mixed bag. While I felt better than usual directly afterwards on Tuesday evening, and was able to have a bowl of soup with my family and read a couple of books to Theo before bed, Wednesday was a very rough day and I was pretty sick. Today it’s just a dose of the PARP inhibitor, so that should be, hopefully, easier to tolerate.
 
Whatever it is, it is. I’m thrilled to be seeing Jennifer and having lunch with Scott, and enjoying this beautiful, sunshiny day!
 
Copyright 2011, Amy Rauch Neilson
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The Cure: “You’re The One That I Want!”

14 09 2011

"The Cure: You're The One That I Want," the Art Bra that I'll be modeling on the catwalk at the Third Annual Bras for a Cause this Saturday night. And yes, if you must know, that IS my back. Photo by Diane Baldwin.

My involvement with Bras for a Cause of Michigan started the way many things do in our lives. By chance. An opportunity presents itself and we nab it.
 
That’s how it happened in March 2010, when my genetic counselor (the one who oversaw the testing for my BRCA 1 gene), e-mailed me and said Bras for a Cause was looking for models. Not just any models. Breast cancer survivors who were willing to strut their stuff on the catwalk at the Royal Oak Music Theatre — not a small venue by any means.
 
The invitation intrigued me. So, I took at look at their website. The Art Bras were amazing — creative, thoughtful, detailed. Lots of hard work goes into these babies and believe me, after you’ve worked on their creation for a couple of months, they do become your babies!
 
So, I said yes. I didn’t have a clue as to what I’d be wearing on stage in front of say, 1,000 people. But my perspective on life has changed a bit since I’ve been battling breast cancer. Honestly, if I can do that, I can do anything.
 
I’m glad I said yes.
 
It was a day and evening to remember, that first Bras for a Cause that I was involved in on September 18, 2010. Area salons donate their time and skills to professionally make up and style all of the models. And, while we were backstage getting beautiful, we chatted and laughed and shared stories. I met people who are “just like me.”
 
Even though I have the most amazing friends and family and support group worldwide — and you really are amazing — when you are with someone who has been through the same battles you’ve fought, it’s totally different. There’s an instantaneous bond and the rest of the world recedes, blurs like an out-of-focus camera lens, for a  few minutes, while you share, pour out, what’s in your heart.
 
I met a model last year who was ballpark my age and like me, had one child. We got to talking about the extra challenges that young breast cancer survivors face with fertilitiy and family issues. Chemo can throw young women into premature menopause — wayyyy prematurely — and dash the dreams of having babies. Luckily, both of us had already been blessed with one. Even more fortunate is that it has only been in recent years that the medical community has embraced the notion of an early-stage breast cancer survivor going on to have another baby. Studies show that not only is it safe for a Stage 1 or Stage 2 breast cancer survivor to have another baby, but for some as yet unknown reason, it provides a slight bit of extra protection against a recurrence.
 
That’s what we were talking about during a break. Her questions echoed mine and quickly established a knowing between us that is impossible to share with someone who hasn’t walked in our shoes — much as I try to convey it in my blog posts, speeches, conversations, and will do so in my upcoming book, No Safe Place.
 
“My husband and I go back and forth all the time,” she said. “Should we have another baby? Would it put me at too much risk? Should we just count our blessings and move forward?”
 
Yes, she, as I, had both felt this tug on our hearts on multiple occasions. I’d done a lot of research and consulted with my ob-gyn, who sees only BRCA 1 and BRCA 2 positive patients, as well as sitting down for a conversation with the IVF doctor who extracted my eggs and created 8 embryos for Don and I back in 2006 — just weeks before I began chemotherapy. Cryo-preserved embryos are as vital years — even decades — after they’ve been frozen — as they are the day after. So, time isn’t an issue for the embryos.
 
They also have some real plusses for the breast cancer survivor. Those embryos never “age” and, even women who have their ovaries removed as a preventive measure against the higher risk of ovarian cancer that gene carriers face — as I did in June 2010 — can still carry a healthy, full-term baby via cryo-preserved embryos.
 
The natural fertilization process, obviously, has been bypassed. A woman’s uterus, I learned, does not age at the same speed as the rest of a woman’s body, but much more slowly. So, two months before I had my ovaries removed, I had this conversation with my IVF doc, hoping that Don and I still had a chance to try for one more. We did.
 
But with my current Stage 4 diagnosis — no way. Even in remission, I would never take the chance of putting my body through the stress of a pregnancy. That leaves surrogacy as our only option for those embryos. It is an option on paper, but not for us, not now. We are counting our blessings every day in our beautiful Theodore, and praying that I regain my health, stay in remission and am here to see all of the beautiful moments of his life.
 
That was not the case for the other model, as she remained in remission. And so she was faced with a few extra points to consider as she and her husband debated the option of trying for baby #2. Not only do young women who are breast cancer survivors have to consider, as any woman would, whether or not a second child is right for her and her family, but she must also weigh a list of additional factors. How will it affect my body? What if I have a recurrence at some point? What if I won’t live long enough to raise this baby? Is that really fair?
 
These are the kinds of conversations we shared while we were all getting ready for the evening, the bright lights, the music, our trot down the catwalk. Of course, it was by far the only thing we talked about. Most of the day was filled with lighter conversation and laughter. But still. You knew that if you had something that you really wanted to share, you had a roomful of women who had been there, understood, could offer real, true-blue insight.
 
That was priceless, as was walking out on stage and later to loud applause, mingling with a crowd of people who were there to support each of us, and the cause. What an amazing spirit-lifter to walk out on stage and be cheered on by hundreds of people who are also rallying for us, for The Cure.
 
Bras for a Cause is a classy evening that begins with a strolling dinner with food provided by more than a dozen local restaurants and bakeries, followed by live music, the Model Show, mcee’d by Dave Coulier of Full House fame, a Live Auction with amazing packages to bid on, like golf, a year of eating out, even a chef who will come to your home and cook a gourmet dinner for four. There’s also a Silent Auction that runs throughout the evening with too many amazing items to list. It is a fun night that flies by.
 
This Saturday, we’re doing it again. This year, I’ll be speaking briefly, and I’m on the Committee, along with Rachel Hunt, as part of the Media Relations team. Our Committee began meeting in February. Pulling off the night’s events takes about a year of planning and lots of hard work by our relatively small group.
 
We have twice as many models as last year and the event continues to mushroom. 100 percent of proceeds go to Gilda’s Club of Metro Detroit, a place where cancer patients, survivors, friends and family can go for support.
 
Last year, I modeled an Art Bra I created with the help of my mother-in-law, Margaret Neilson, who is a two-time breast cancer survivor and amazing with a needle and thread, amongst other things. We created a bra that I titled “She Blinded Me With Science” that was beaded in the shape of multiple DNA strands, sequins, and test tubes hanging from the bottom. Of course, we used red boa feathers to outline it. What’s an Amy Art Bra without lots of red boa feathers?! I also walked to that song, which was really fun. And later, my bra was sold during the Silent Auction to a physicist who wanted to hang it up in his lab!
 
This year, my brainchild was to wear black leather and take the catwalk to a song from the musical Grease. Months ago, I envisioned a bra that would be strung with pink lights that spelled the word CURE, worn as I strutted to the song “You’re the One That I Want.”
 
With the help of my bff Diane Baldwin and her husband, Matt, this vision became a reality after many tries and lots and lots of hard work. I, of course, escaped the work by landing myself in the hospital the weekend my Art Bra was due. (Perhaps that was a little too dramatic and next time I should just tell them I don’t want to help…grin). They pulled it off marvelously and how they did it is a story for another time. But I can’t thank them enough for turning my vision into reality, and I am thrilled that they will be there Saturday night to see me model it and cheer me on.

You can, too. There are still tickets left. And the Art Bras — including mine — will be auctioned off during the Silent Auction. The event is Saturday night, 6-10 p.m., at the Royal Oak Music Theatre in Royal Oak, Mich. Tickets are $40 in advance or $45 at the door. They are being sold at Gilda’s Club Metro Detroit on 3517 Rochester Rd, Royal Oak, Mich. without a service charge. Tickets also are available for purchase at the Royal Oak Music Theater box office, online at www.royaloakmusictheatre.com, or by phone (800) 919-6272.

Hope to see you there! And if you can’t be there, check out the brasforacausemichigan.com website afterwards for photographs and video footage!

Copyright 2011, Amy Rauch Neilson

 
 




Sputter, Sputter, Back to Life

13 09 2011

Theo and Don giving summer one last hurrah! Photo by Amy Rauch Neilson.


It’s been a rough week or two. I haven’t blogged in a while. And you noticed.

I’m glad.

It’s nice to know that when I don’t blog, there are people out there who notice. Lots of them.

So, what was the hang-up? I’ve thought a lot about it and it really wasn’t any one thing. It was a lot of things.

I was scheduled for chemo last week, but when I got to the infusion center, my white blood counts were still too low from my bout in the hospital, so they had to send me home.

My CT Scan results came in from two weeks ago and they were very good. My condition remains stable to slight improvement. The tumors in my lungs — two on each side that started out the size of blueberries — continue to shrink.

I should be thrilled. I AM thrilled. But I also get scared.

Sometimes, the CT only captures my lungs. This one was more comprehensive, taking a snapshot of my lungs, abdomen and pelvic regions. So, this one showed my liver.

Months ago, a CT report showed spots on my liver. But, because there has never been a baseline of my liver prior to my January diagnosis, no one knows for sure what those spots are. Are they cancer? Could they simply be hemangiomas — harmless clusters of blood vessels that my family is quite prone to?

There’s no way to know without a biopsy. And a biopsy doesn’t make sense. Because, whatever those spots are — cancer or not — my treatment wouldn’t change. A biopsy presents risks. It’s surgery. And there’s always the chance that when the surgeon goes in to take a piece of the suspicious growth, a cell or two could escape in the process — something that’s known as “seeding.” In essence, it’s taking a chance cf spreading cancer as a big downside when the additional information — whatever it is — doesn’t offer an upside.

The CT Scan results showed that the spots on my liver had shrunk considerably since they were first noted in the spring. But no one knows whether that means they are cancer — and the chemotherapy shrunk them — or, that they are something else, and they shrunk for some other, unknown reason.

Regardless, they DID shrink. Everything has. I’m doing really well. That’s the rational interpretation.

The not so rational reaction is the emotions, the fear I feel when I get test results back, wondering about these strange, rogue, uncooperative cells that are in my body. How many and where? And my incessant prayers and continuing journey to annihilate them. When? I wonder. When will this part of my life’s journey be over? When will life return to
“normal.”

So, there was the letdown of not being able to get my “medicine,” followed by the scan results which should have had me leaping for joy, and did, in many ways, while also causing me to question and to fear.

Yet, I feel from the depths of my soul that I am not only moving in the right direction, but that I am going to be on this planet for a long time to come.

My doctors have also been slowly weaning me off one of my three chemo drugs — Gemzar. That is the drug that so ravages my bone marrow and causes my counts to plummet — landing me in the hospital two weekends ago. There are two sides to this news: One, my chemo treatments will be shorter and less toxic. I’m at chemo this very moment with my bff Kristi Lynn Kahl, going through my first “test round” of what it will be like with one less chemo drug entering my body. Will it make a big difference? Will I be a lot less sick as a result? That’s my hope.

It’s also scary. Though I was unable to get chemo from the end of June til mid-August due to low blood counts and hospitalization, and during that time, nothing grew — it actually continued to shrink — there’s always concern when a drug goes away that the cancer could regain its foothold. So, that was on my mind last week.

Thank God I was blessed with a strong spirit that rebounds quickly. This week is a whole new week and I’m feeling quite fine.

Sunday, Don, Theo and I wandered the Toledo Zoo with close friends and had a blast. Monday, I watched dockside (I’m still not allowed in the water) as Don took Theo on a jet ski ride — what a beautiful, big grin on Theo’s face! And today, my counts were in line and I am able to get my chemo treatment.

In short, I’m back. But thank you for noticing my absence. It’s so very uplifting to know there are people out there thinking about you and praying for you, even on the days when it’s hard to offer anything in return.

I may have sputtered, but I am back to life and loving it.

Copyright 2011, Amy Rauch Neilson








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