I’m All In

31 01 2011

On the way to my first chemo appointment in May 2006, following my first breast cancer diagnosis, I was trying to figure out how to get out of it. My husband, Don, was driving. I sat passenger seat, jittery, my eyes searching for an escape hatch, eject button, anything to get me out of the four rounds of A/C chemo I was about to start. I even contemplated — during a moment of temporary insanity — if I could open the car door, duck and roll…

How things change.

Fast-forward almost five years to January 26, 2010. I’m in the car with my friend Elaine, heading for the pet store to replace Mr. Green Jeans — our Monkey Tiger-legged Tree Frog — who I’d found lying lifeless in the cage that morning. We were racing against the clock to get the Mr. Green Jeans Body-Double home and in place before Theo came racing in the door from school. That’s when the phone rang.

It was Claire from Royal Oak Beaumont, calling to share what ranks up there as perhaps the very best news of my whole life — my name had been selected from the National Pool of breast cancer patients waiting for the PARP Inhibitor. I was in.

I cheered. Elaine gave me a high-five. You have thought I’d won the lotto. And in a way, I had.

Claire asked me if I’d be willing to start chemo Friday. Without hesitation I said, “I’d LOVE to!” Imagine that counter-intuitiveness of such a statement, at least, on its face.

So, here I am, almost five years later, on the eve of hard-core chemo treatments two times a week for two weeks, repeat, keep going. This isn’t a scenario of four rounds of chemo, done. This is four-rounds-of-chemo every two weeks. And I can’t get there fast enough.

In May 2006, the soles of my shoes must have left skid marks in the parking lot of the Rose Cancer Center as Don dragged me in. Tomorrow morning, I’ll only be leaving skid marks if someone tries to take me out before I get what I’ve come for — that magic elixir called BSI-201.

How things change.

I don’t care what I have to do to get to the other side of this.

I’m. All. In.

— 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?


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…

If There’s Anything We Can Do…

30 01 2011

More people than I can count have uttered these words in the past three weeks:

If there’s anything we can do to help, please let us know.

There is something. In fact, there are two somethings.

The first is what many of you are already doing: Praying for me and my family. God’s pure white light has touched us to our very cores here in the Neilson household and we have been surrounded by daily miracles (I’ll be sharing these in an upcoming post). For that, there are no words. We are deeply humbled and very grateful.

The second request is this: Please subscribe to my blog.

Hang in there; there’s a method to my madness.

I had a lengthy discussion with my literary agent, Jessica Faust of Bookends, LLC, last Monday. She and I have been working together on a memoir for several months, one that would tell the story of the BRCA genes as well as of the four generations of women in my family who have been identified as carriers.

Three weeks ago, this story took a sudden, jerky turn in the road. And I am more compelled and driven to complete it than ever before. It seems that there was a final piece that I had been waiting for — I just didn’t know it.

Jessica is an extremely talented, successful, well-respected and highly-sought agent and I am indeed blessed to have her on my team. She believes so strongly in my writing abilities and this story that she told me last Monday that she will go into the trenches to sell it to a publisher.

In order to do that, though, I have to supply a final missing piece from my end: blog subscribers. Publishers in the year 2011 are not only looking for talented writers, but also for proof that a writer has a “platform” — defined in many ways, but in this case, they’d be looking at my existing social network, including a facebook page, twitter account, blog — and at least 5,000 blog subscribers.

That’s where you come in. The number of daily hits on my blog has skyrocketed in the past three weeks. But publishers want more than just hits — they want subscribers. It’s free, involves hitting the Email Subscription button on my blog, and entering your email addy. Baadaaboom — baadaabing — you are a subscriber. You will receive an email alert each time I post something new. That’s it.

But this small act on your part will make all the difference. It’ll give me the best shot of grabbing a publisher’s attention. Which would lead to the publication of my book — a story of hope and also of life-saving scientific advancements. I want to spread the word far and wide. I know it won’t just touch lives — it will save them.

My goal is to reach 5,000 subscriptions to my blog by March 3, 2011 — the day that would have marked five years cancer-free for me. Though I won’t be celebrating that mark on that day — not this year, anyway — help me to make it a day of celebration. Subscribe to my blog and ask everyone you know to do the same.

I’ve added an Email Subscription option to my blog. Scroll down and you’ll see it appear along the right side. Enter your email addy. Pass the word on to others to do the same.

Meanwhile, I’ll keep posting updates to my blog’s subscription numbers — until we are up and over the 5,000 mark.

Give Me Just a Minute…

30 01 2011


Most days, I am steadfast in my belief that I will be on this planet for a long time to come. Today is not one of those days.

This article on PARP Inhibitors is the optimistic one. I’m not going to post the links to the Jan. 20 issue of the New England Journal of Medicine articles on the PARP Inhibitor (BSI-201) – they are tough to read and have greatly affected me this weekend – me and my family. Estimates in those articles is that the PARP would only prolong my life by 5-12 months. That’s a best-case scenario.

That said, I am finally and for once in my life happy to be BRCA 1 positive, as THIS is the population of breast cancer patients for which the PARP Inhibitors are the most effective. THIS is the population of breast cancer victims who, along with a triple-negative tumor receptor status — stand the best chance of beating this monster and living for a long, long time. THIS is me; my scientific, DNA profile.

I know I am far from a statistic. And that is why I am trying right now NOT to read some of the numbers — 15 percent chance of survival per my staging, certain number of months per the PARP study, etc. I don’t need to know this right now. Maybe not ever. Cancer survival is a mental as well as a physical task and I need not flood my most imaginative mind with images of the worst-case scenario.

Give me just a minute. I’ll pick myself back up in no time flat and I’ll be outside sledding down the hill in our back yard with Don and Theo. Just as I did yesterday. Thirty-seven trips down the sled run on a small blue saucer, screaming, spinning, yelling “look! no hands!” as if I were riding a roller coaster.

Then again, maybe that’s exactly what I am doing.

Give me just a minute.

— Amy Rauch Neilson

I Felt Like a Recovering Alcoholic

29 01 2011

I’ve been thinking long and hard about which is worse: getting ready for surgery or the actual surgery itself. I think I’ve got a winner: it’s the surgery prep — the “Here’s a list of what you have to do. Oh, and nothing to eat or drink after midnight.”

I’ve lost count of the number of procedures and preps I’ve had to do in the 19 days since I first found the lump. Today’s surgery wasn’t scheduled until 2 p.m. Typically, afternoon surgeries require fasting 8 hours prior. But because the schedule was in flux — they might decide at the last minute to take me earlier in the day — midnight was my deadline.

Not a biggie in the food department. But not to be able to take a drink of H2O? That was like some sort of twisted Chinese water torture. I caught myself in the bathroom this morning, looking longingly at the faucet, wondering if I could sneak just a tiny sip. Surely I could keep this dirty little secret. No one had to know.

After all, a little sip of water couldn’t possibly be the dividing line in a successful surgery. Could it? I felt like a recovering alcoholic, tempted almost beyond the brink.

In the end, I chose the high road. I closed the bathroom door and avoided the kitchen. No agua for me. This surgery was simply too important to risk compromising. And it paid off.

Everything went like clockwork. Wiith some input from my sister, Julie, an RN, anesthesiology was able to take some preventative measures so I wouldn’t have a repeat of Tuesday’s uncontrollable, relentless post-surgical heaving and wretching. Some anti-nausea drugs added to my anesthetic cocktail did the trick, and I made it through recovery without incident. I happily sucked down apple juice and chewed on graham crackers all the way home.

The port is in and though there’s a two-inch incision just below my right shoulder, it’s not causing any pain. My surgeon even worked around the outline of one of my summer tank tops so that the port won’t show!

It’s going to be a fantastic addition to my arsenal in the weeks ahead as it will not only mean that I won’t need an IV poke every time I go in for an infusion, but will allow the direct injection of dyes used for the tests to track my progress as well as prevent or minimize the damage that repeated IV pricks and strong chemotherapy agents can cause to smaller veins, such as those in the arm and hand.

No news yet on the results of Tueday’s lung biopsy. Perhaps that is a blessing for now, as though a positive result will change my staging from Stage 3 to Stage 4, it won’t change the treatment protocol. Sometimes, it’s key to keep your mental focus on all that is good, all that is working in your favor, rather than hearing results or reading survival stats by stage.

My gut tells me that the lung biopsy will be positive for cancer. But I can deal with that because even if that is the case, this cancer is still survivable by a long shot. I don’t care what treatments I have to endure as long as the end result is survival. The means will be what they will be; my eyes are on the prize: remission.

This evening, I gathered around the dining room table with my family — my sister Julie, sister Lisa and family, niece Natalie and hubby Blake, Don and Theo. We all held hands and thanked God for all of the miracles we are witnessing on a daily basis. It is truly amazing. We enjoyed a pot roast dinner and cherry cobbler. And we sat around a roaring fire, just enjoying each other.

All is as well as it can be at this juncture. Chemo was postponed til Tuesday at 1 p.m., when I will begin my regular schedule of Tuesdays and Fridays for two weeks, one week off, repeat.

It was another excellent call by my physicians. As desperately as I wanted to get started today — my breast tumor continues to grow at a steady and alarming rate, there is pain radiating from my right clavicle, and I’m coughing — three days isn’t going to make or break my prognosis. I do not think my body could have tolerated being pumped full of anesthesia, the surgical procedure itself, and recovery, followed by 3 1/2 hours of chemo.

I look forward to a weekend in which I can regain my strength in preparation for Tuesday’s chemo kick-off, as well as one in which I can simply hang out and enjoy my family.

Is that Whiplash I’m Feeling?

28 01 2011

Everything is changing so quickly lately I think I’ve got whiplash. Today I will have surgery to implant the chemo port @ 2 p.m. I will not begin chemo today as originally planned, but will begin Tuesday @ 1 p.m. This is for many reasons, but most importantly, because the doctors really aren’t sure if starting my chemo right after I come out of surgical recovery is a wise decision, especially since I was so very sick from the anesthesia after Tuesday’s procedure. I’m at peace with all of this. I was wretchedly ill Tuesday and I don’t see how a repeat would do my body any good.

Please pray for today’s procedure to go off without a hitch. I will also likely receive the results of Tuesday’s lung biopsy today. Please continue to pray that it is negative.

My sister Julie flew in Wednesday and we have lots of family plans for this weekend, so it will be nice to enjoy them without the side-effects of chemo. Many people have inquired about the info regarding the Yahoo! Calendar. Thank you. We are very grateful. We have everything we need for the next week or so, it looks like. I will send out that access information this weekend.

I’ll also post an update on today’s procedure as soon as super-humanly possible…:)

How Am I Going to Make it Through?

25 01 2011

Lung biopsy was uneventful — went as it should have. Results should be back Friday. Afterwards was a different story. You must lie on your back and NOT TALK for two hours. During that time, a headache came on. I told the nurse twice, but she said I couldn’t have anything for it as I was not allowed to sit up and swallow a pill and sip water.

Ten minutes before my “waiting period” was up, I got a migraine. I started dry heaving and couldn’t stop. It was awful. The nurses pumped me full of anti-nausea meds and gave me a migraine med.

After clutching my head for several minutes and cursing every light, sound and smell, it finally started to ease. My beautiful niece Natalie was there by my side, holding a cold washcloth to my head. Don was there, too, telling me we are going to get through this.

I felt despair, wondering how we ARE going to get through this since I’m still in the testing stage and haven’t even started treatment yet and I’m already feeling ravaged and weak. That is a scary thought. One day at a time.
We just got home from the hospital. I am off to bed to rest for a while.

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.


“Like There’s Gonna Be a Run on Red-Eyed Tree Frogs!”

23 01 2011

Soooo excited! After months of research and saving up, we got our tree frogs yesterday! We did not end up with a red-eyed tree frog…yet. The pet store, House of Pets in Garden City, did have three that came in Friday. When I called Friday and heard they had some, I was jumping up and down telling Don, “Honey! We gotta go get them before someone else does!”

“Like there’s going to be a run on red-eyed tree frogs,” he said.

Well, now the joke is on him, as there WAS a run on red-eyed tree frogs! There was only one left when we got there yesterday and he had an abrasion on his nose – – a sign of certain, impending death for many frogs as they easily succumb to infection and red-eyeds are particularly fragile. That one was not expected to live through the night.

So there I was, in front of the tank, having just gotten the news, telling Don, “See? I TOLD you so!” Now this has become the new family joke and I’m sure Theo and I will be razzing Don for years. “Watch out! There’s gonna be a run on red-eyed tree frogs!”

So, onward to the other aquariums and that’s when we found them. A pair of marble tree frogs that had just come in – so rare that the pet store (specializes in amphibians) hasn’t had them before in their 32-year history!

I have read extensively about Marble Tree Frogs and they are one of my uber-favs that I didn’t think we’d have the opportunity to buy.

We also ended up with a beautiful Monkey Tiger-Legged Frog — named so because they are the only tree frogs with opposable thumbs, so they actually climb rather than hop!

Both species are full grown at about 1.5 inches!

Theo came running downstairs to get me this morning as soon as he got up. “Mom Mom! You gotta come see!”

Our little nocturnal babes were still up, so Theo and I got our cameras and were taking pictures of them, trying politely to push each other out of the way so we could get THE shot. That’s when Don walked in. He shook his head and said, “If I told people this is what you were doing at 7:30 a.m. on a Sunday morning, they’d never believe me.”

Or would they?

These little precious tree frogs are gorgeous and cute, with their big eyes and bright colors and teeny tiny size.

I told Don I felt a bit guilty spending money on the tree frogs and their habitat when I know I’m headed for pull-out-all-the-stops chemo and won’t be able to log as many hours at work. But he said, “You will be home and sometimes, so sick you won’t be able to do much besides gaze into their cage and watch these beautiful little creatures. It’ll make your heart happy when the rest of your body isn’t feeling so good. And that’s worth it.”

I’m with him on that one.

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