Guest Post: The Story Behind the Story

8 11 2011
By Kristi Rugh Kahl
A few weeks ago, Amy’s husband, Don, was driving home from work in his pick-up truck when he first heard “I’m Gonna Love You Through It,” by Martina McBride, on the radio. He was so deeply moved by the song that he had to veer over to the side of the road afterwards and pull himself back together.
The next day, he forwarded the music video to Amy with a simple message: You need to watch this, babe. Amy did, and her reaction mirrored Don’s. Tears flowed and she found great strength in the knowledge that, like Don, so many people everywhere stood strong in this fight together with their loved ones, right by their side, every day, every moment, every surgery and treatment.
“I can’t imagine what it would feel like to have so many people gather around you to release lanterns of pure white light heavenward,” Amy said. I decided it was time for Amy to experience it for herself. This is the inspiration behind our upcoming benefit, Sky Lights of Love, December 3, 2011, at the Van Buren Township Lookout Point, Van Buren, Michigan. No matter where you live:

You can Participate!

  • Purchase a Lantern, and join us as we gather together to release hundreds of lanterns of light over Belleville Lake in Amy’s honor ! Lanterns will be distributed when you check-in at the event.  Lanterns are available by pre-sale onlyPurchase Lanterns by November 20, 2011.  No Lanterns will be sold at the door.
  • Can’t be there? You can still purchase a lantern, and we will release it on your behalf.
  • You can make a donation to the event here!
We have already been pleasantly surprised by the number of lanterns sold today and donations made for the Benefit — just hours after we announced it yesterday. Thank you! We are off to a good start. We look forward to seeing as many of you there on Dec. 3 as possible!
Don’t forget to check out the Martina McBride video. Not only is the song gorgeous, but it will give you a good visual of just how amazing and beautiful these lanterns are as they soar through the night sky.
Copyright 2011, Kristi Rugh Kahl




“I’m Gonna Love You Through It.”

14 10 2011

A couple of times early on after my diagnosis, Don called me from work to say he’d lined up a sitter for Theo and that he’d like to take me out to dinner. Just the two of us.

Sounds romantic. And it is. Except.

Except that I was gripped by this terrible, irrational fear that he was going to tell me he couldn’t do this anymore, go along with me on this journey.

So, when we got to Carrabba’s and I was looking like a deer caught in the headlights rather than a wife out with her husband on a Friday night, he was confused.

“What’s wrong?” he asked once we were seated in our booth. “Did you want to go somewhere else?”

I stared at the table for a moment, then worked up the courage to say, “I’m afraid you’re going to tell me you can’t do this anymore.” And how could I blame him, really? This, my second cancer diagnosis in five years, the first coming when Don was just 32, me, 37.

Don reached across the table and covered my hands with his.

“I just want to have dinner with the woman I love,” he said. “I’m not going anywhere.”

It isn’t all that irrational if you look at the statistics — as many as 50 percent of marriages dissolve after a cancer diagnosis.

But we all know that when you’ve got the Real Deal — a hubby like mine — statistics are bunk.

It was silly. But I was scared.

A few days ago, Don sent me the most beautiful music video by Martina McBride that captures what this whole journey is all about. Then, this morning, my neighbor, Sue, sent it to me as well.

Me and my hubby, enjoying a ride on our pontoon boat. I just watched it. Again. And cried. Again. But they were very happy tears and a reminder that while the journey is tough, so much of what comes out of it can indeed be beautiful.

It is amazing. But a word of caution before you press “play” — grab a box of Kleenex first. (Click on Martina McBride’s name, above, and it will take you to the video.)

Copyright 2011, Amy Rauch Neilson





Could the Future be NOW?

2 06 2011

Me, modeling the DNA-themed Art Bra I created along with my mother-in-law, at the Bras for a Cause event, Royal Oak Music Theatre, September 18, 2010. The PARP Inhibitor has proven to be particularly effective in BRCA gene carriers like me. Photo by Trish Baden MacDonald.

I’ve got Google Crawler working for me day and night, when I’m working, sleeping, at the infusion center, hoping to catch a ball at a Tiger’s game, making fruit-kabobs for my kid’s kindergarten class.

When GC finds something related to the BRCA 1 or BRCA 2 genes, the PARP Inhibitor — or any of the related key words I’ve sent it out into cyberspace to fetch, I get an alert in my e-mail box. I’m particularly excited about the one that came through today.

From the article:
“This drug is a very potent PARP inhibitor. It has already demonstrated very encouraging activity as an IV formulation and now we know that the oral formulation is also active. This potentially opens up many exciting opportunities for long-term treatment for cancer patients,” said Professor Hilary Calvert, Director of Cancer Drug Discovery and Development at University College London, UK, and a pioneer in the field of human cancer therapy with PARP inhibitors. “We know that PARP inhibitors are active in germline BRCA-mutant (gBRCA) tumors, and that this activity extends beyond this group of tumors into broader patient populations in ovarian cancer and may do so in other cancers as well.

“PF-01367338 is currently in a Phase 1 clinical trial examining the maximum tolerated dose of oral PF-01367338 that can be combined with intravenous platinum chemotherapy (the kind of chemotherapy that I am on) in the treatment of solid tumors. This program is supplemented by two ongoing trials, currently using the IV formulation: a Phase 1/2 study in gBRCA breast and ovarian cancer and a Phase 2 study in the adjuvant treatment of triple negative breast cancer (the kind of breast cancer that I have). Clovis Oncology intends to replace the IV formulation with the oral formulation in these studies.”

Now, some backstory.

One of the most miraculous phrases my oncologist uses in describing the war on breast cancer and how close we are to the end is her belief that breast cancer is already a long-term manageable disease, much like, in her opinion, diabetes and hypertension.

There are so many different breast cancer treatments out there right now that if one doesn’t work, there’s another go-to drug. And while you are holding the disease at bay with one drug, others are coming online. Not over the course of years, she’s explained to me, but in days, weeks, months. In fact, the PARP Inhibitor that is part of my current treatment — and has demonstrated to be particularly effective in patients who carry one of the breast cancer genes, as I do — only came online 14 months ago!

All of this is amazing news that gives breast cancer patients, even those in Stage 4 like me, a lot of hope that long-term survival — and a good quality of life during that survival — is not a pipe dream, but a reality. My doctor has told me numerous times that while she of course has no crystal ball, she believes I will live for years. We are not looking at a prognosis of just three, six, twelve months left to live. Even at Stage 4.

I’m thrilled that I was offered the opportunity for the PARP Inhibitor to be a part of my chemotherapy regimen, along with Carboplatin and Gemzar. The PARP Inhibitor is currently a Phase 3 clinical trial drug, one that Royal Oak Beaumont worked hard to be able to offer. One I am so very blessed to get.

Right now, the PARP Inhibitor is an IV-drug only; its oral form has not yet been proven safe. During the two out of every three weeks that I receive chemo, I receive a dose of the PARP Inhibitor on both Tuesday and Thursday. But my doc has known all along that its oral equivalent was in the works — and she’s kept me updated.

Today, the article that Google Crawler flagged for me details, among other things, another huge leap in the development of an oral form of the PARP Inhibitor. What makes this so exciting is that it means the future my oncologist sees could soon be upon us.

She told me a few months ago that someday, not too far down the road, patients like me will be going to the pharmacy with an Rx for the oral version of the PARP Inhibitor, and going home with pills to take it as part of our daily meds the way a patient with high blood pressure does now.

Imagine the change in my life, in the lives of other people with breast cancer, when drugs like the PARP prove not only effective, but become available in a pill form. Breast cancer is kept at bay, my life does not revolve around trips to the infusion center and days of nausea and fatigue. We reach yet another milestone in the war against breast cancer — and continue to rachet up the quality-of-life factor.

Even better, it seems there is a whole family of PARP Inhibitors coming online that give new hope for a better future not just for breast cancer patients, but prostate and other cancer patients as well.

I am certainly not a medical doctor by any means, but I keep myself a well-informed layperson. Check out the article. The future could be upon us.

My job is to hang in there — even on days like last Thursday, when I was sobbing as I waited for my ride to chemo, because I simply did not want to go. I did not want the infusion or the sickness that follows, that I already know all too well.

But my job is to go and keep on going, no matter what. To take advantage of the very best science and medicine has to offer while I await the next best. Until someday, my disease is in full remission and I’m able to keep it that way.

As I was walking to the ballpark Tuesday evening with my friend Jodi, I said, “You know, Jodi, even if this was the best we could do, the best we could ever do — two weeks on, one week off — I still have a darned good quality of life in between infusions and I’d take this gladly over the alternative, any day of the week.”

But my bet is, I won’t have to.

Copyright 2011, Amy Rauch Neilson





Oh, Great Crappy Day!

14 04 2011

Today, I felt physically horrible. Yet, great things happened.

Physically horrible because not only are my white blood cell counts down — which meant Don has had to give me shots of Neupogen the past two nights, the injection that helps my white counts to recover, but makes every bone and muscle in my body ache in the process.

This Chemo Round, there’s also the added complication of a low Hemoglobin count. Tuesday’s chemo was a game-time decision; the doctors considered my counts before finally deciding to go ahead with my infusions. I was given an extra infusion of a drug called Procrit on Tuesday along with my standard chemotherapy drugs, in the hopes that my counts will recover and I will not need a transfusion.

But speaking of great things, I was humbled and deeply touched by the number of people who stepped forward yesterday and today to offer to roll up their sleeves and donate their blood for me, in case I do need a transfusion. Don’t ever bother to tell me there aren’t a lot of wonderful, giving people in the world, because I won’t believe you. Not for a second. I’ve seen way too much to the contrary to ever believe anything else.

And on to more great things — today, I heard from television, print, and radio media regarding upcoming interviews to help get the word out there about my story, the unlikelihood of this diagnosis after all of the preventative measures I took and the aggressive treatments I underwent, and the hope that this information will help to save lives, many lives through better methods of self-examination post-mastectomy as well as monitoring.

I have dreamed of starting a foundation for more than two decades. I wasn’t sure exactly what shape it would take, but I’ve always wanted to find a way to help people on a large scale. I think the pieces of the puzzle of just how that will happen in my life are beginning to fit together.

I had the good fortune to end up spending more than two decades as a financial writer/editor, which means I have acquired a good understanding of investment vehicles and how they work. My plan is to use this background down the road to manage the financial end of my foundation to help all donations and revenues to grow and thrive so that the funds can help as many people as possible.

I see the foundation as growing out of http://www.itsinthegenes.org in a multi-faceted way. I have big plans, many of which I am already moving from the planning stages into the actual implementation of the ideas.

It’s all, always, in God’s time. And He, no matter how confusing or difficult the circumstances in which you find yourself, is always right.

Copyright 2011, Amy Rauch Neilson





Status Update: Positive News!

11 04 2011

Yes, I know you must feel like yo-yos. I do, too.

But the meeting with my oncologist today went very well. What she said made a lot of sense. And I trust her and her insights and medical knowledge. She is a good egg.

I was accompanied by my husband, Don, and sister, Lisa. We covered all the bases, got all our questions answered, such as:

Yes! the CT Scan really does indicate shrinkage in the four lung tumors! Yes, it is entirely possible that the three spots showing on my liver are benign/hemangiomas! Yes! There are lots and lots of treatments available and for now, there’s no need to worry about that, as this one is working!

I’m wiped out at the moment, but wanted to post and say, Yes! I think we are indeed headed in the right direction!

More later…promise. This takes a lot outta a girl.

Copyright 2011, Amy Rauch Neilson





Status Update: Doctor’s Office

11 04 2011

At doctor’s office waiting to see my Oncologist and hoping for answers. Also hope I don’t start sobbing. I hate when I do that.

I smell hyacinths which remind me of Spring and miracles. Maybe I’ll pick some up on the way home.

Copyright 2011 Amy Rauch Neilson





And I’m Off and Running! (Chemo, the Day After)

2 02 2011

OK, maybe more like running, collapsing on the bed, sleeping, getting back up, running some more. Running just my natural state of being, so that’s actually good news. It’s my “normal.”

Yesterday’s round of chemo was, in keeping with the racing theme here, a trifecta. Gemzar and Carboplatin were first, followed by that magic elixir, the PARP Inhibitor BSI-201.

Tuesday is my longer day. It was about a 4 1/2 hour infusion. Friday I will get my second dose of the PARP Inhibitor, and that will take only about 1 1/2 hours. Chemo will continue on a Tuesday/Friday regimen, with labs drawn on Mondays, for two weeks. Then I’ll be off a week, repeat.

No one knows for how long I’ll be undergoing chemo. It’s different for everyone. Right now, it looks like it will be about four to six months. But, I will go through body scans at regular intervals to see how effective these medicines are. Hopefully, they will put me into remission very quickly.

I got the call about my lung biopsy results from my oncologist, Dr. Dana Zakalik, about 10:15 yesterday morning. I was scurrying about the house, trying to help my sister Julie get her luggage packed and grabbing my iPad and a blanket for chemo, when the phone rang.

My gut told me that the biopsy results would just confirm what we already suspected — that the breast cancer had spread to my lung. The results were positive; that IS indeed breast cancer in my lung. Looks right now like it’s just my right lung, and that it has affected two of the lobes. And yes, this takes me to a Stage 4.

My next step was to find my sister, who was in the shower, and tell her, “I need you now!”

She shut off the water, still covered in soap lather, wrapped herself in a towel, and threw her arms around me.

I couldn’t speak. My body was vibrating from the wracking sobs.

“Is it what we thought, baby?” she whispered as she rocked me back and forth.

I nodded. We moved to the edge of the bed in the guestroom and sat down. When I was able to compose myself well enough to speak, I said, “You can’t let people forget me when I’m gone. Pleeassseee don’t let people forget me. People always say they’ll never forget you, but then their lives get busy, and then…”

I told her my wish would be that she and our other sister Lisa, my nieces Natalie and Emily, all of our family and friends who wanted to, would find a way to use my name and my journey and battle to further the cause, to move ever closer to the day when this disease will be eradicated. When it would no longer be allowed to run about, pell-mell, wreaking havoc and wrecking lifes. I said, “Something like Susan G. Komen’s sister promised Susan — and then carried out.”

I never have been one to do anything in a small way. As my Dad always told me, “Shoot for the moon, Aim. And even if you don’t reach it, you’ll still be among the stars.”

Julie promised me. She promised me that they would work together to come up with the perfect idea — the one that would help the greatest number of people, in my name. So, I wouldn’t be forgotten, and I could contribute to this cause long after I’m gone.

But that is a conversation that can be tabled for a while. Months. Maybe even years. The PARP Inhibitor could not only melt away the cancer cells that are present, but would put and keep me in remission. And there’s a very good chance that this is exactly what’s going to happen. Maybe, in this best-case scenario, I’ll be around to lead this project, whatever it turns out to be, whenever it’s my turn to carry the torch for this cause.

So, how does yesterday’s news change things? It doesn’t. Not, at least, in terms of my treatment protocol. It did pull me down mentally for a little while, an hour, maybe two. But I picked myself back up and was off to my chemo treatment. Happy. Happy to have the chance to get the drugs that may save my life.

Does it change my prognosis? Probably not in any way that’s worth measuring. This new invader, afterall, announced its intentions from the get-go. Now, I’m voicing mine. I will live. For many, many, many years. I will be by my husband’s side to raise our five-year-old son into adulthood, and beyond. I will lobby for this cause from the depths of my very being, in every way that God asks me to, in every direction He leads me.

I made a new friend in the chemo chair next to me. Her name is Alicia, and like me, she is the mother of a young child. She’s brave and I know she’s going to make it. We’re now also on facebook together, and might I shamelessly add, she’s a new subscriber to my blog. PR for this cause, afterall, is a 24-7 job. Cancer never sleeps.

I feel OK today. A little nauseous, dizzy, fatigued. Not too bad for the day after chemo. I was just going to post a short update and here I am, 892 words later. I’m tired. Back to bed for me.

– Amy Rauch Neilson





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





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.

.








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