Status Update: Second Opinion Today

9 06 2011

Well, Don and I are off to the University of Michigan Breast Care Center this afternoon for a second opinion on my diagnosis and treatment. Long story of how we ended up there instead of at MD Anderson right now. But it’s a good story. I’ll share it later.

I’m nervous. I’m hoping for a doctor with a great bedside manner who has lots of encouraging information to share.

I’ll let you know how it goes. Thank God Don is by my side.

Copyright 2011, Amy Rauch Neilson

My Book: Chapter One

8 06 2011

I am lucky enough to be represented by a top-notch literary agent, Jessica Faust of BookEnds, LLC. With her guidance, I’m telling my story, the story of my family, the generations of women affected by the breast cancer gene. I wrote the first draft a couple of years ago, after I’d finished treatment for Stage 1 breast cancer. Jessica and I then had a pow-wow and went over the areas I needed to rework. I’ve just about completed what Jessica needs to “shop” my book to a publisher. I’ll be turning in the new chapters and proposal on Friday. In the meantime, Jessica has granted me permission to share just one chapter with my blog audience. Something you should know before you begin reading: I am calling it a “Suspense Memoir.” And if this genre didn’t exist before, it does now.

Chapter One
I woke up face down on the ground, covered in something green and slimy. There was a clump of it in my hair, hanging down onto my forehead, another wrapped tightly around the fingers of my right hand, a third clinging to my right knee. I remember thinking that it felt like the bowl of icy, unpeeled grapes I’d once plunged my hand into at a makeshift haunted house.

I don’t know how or why that memory came to me at that moment. But there it was – the bowl, the young girl dressed like a Ghoul, a hood shrouding her face, the sounds of zombies and their screaming victims turned up so loud they hissed through the overtaxed speakers from the back of the garage. I remember how the little Ghoul grabbed my left hand and forced it into the bowl, then leaned in to me and whispered, “Gen-u-whiine Eye of Newt.”

I lay there, my nose in the soil, taking in shallow breaths, afraid to turn my head to the left or right. There was dirt on my lips and on my tongue. I could feel the grit on my teeth. I lay that way for what felt like a moment, but could easily have been an hour. Maybe longer. It was a dark, starless night, a night with no point of reference, no use, no care for time.

I was clamped by fear. Held in place like a chunk of wood in a vice, that big, old, clunky tool that sat on the edge of my Dad’s greasy basement workbench. The one that’d hold a piece of lumber to be sanded or metal to be bent. When I was a little girl, I used to test it, swinging the arm round and round to see just how tight it could get, stopping only when the arm quit mid-cycle, couldn’t budge any further.

I tried to suck in a breath. I waited. And I listened. The earth was cool and damp. The air was still. The acrid scent of decaying leaves entered my nostrils, that, along with the pungent smell of manure.

I closed my eyes and tried to concentrate. No sound. Not a Barn Owl or the buzz of a mosquito homing in on tender skin, the promise of a good meal on a humid mid-summer’s night.

I knew then that it was too quiet. There was a void. A blackness. Like time had ceased, the very life sucked out of it.

I turned my head to one side and dared to open my eyes. I reached out and began to cautiously pat the ground around me. I felt something strong, thick coming up from the earth. I followed it, running my hand up as far as I could reach, maybe a foot, maybe two. I touched another. Then another. The next one was bent, broken, lying on the ground. I moved my fingers up the strong stem to the silky, stringy top. It felt like the tassle on a graduation cap.

Corn. I was in a cornfield.

Oh my God! Not again!

My heart began pumping so hard my chest hurt and for a moment, I felt disoriented. I brushed the soggy leaves from my forehead and reached down to pull them from my right knee. Beneath them, my skin was warm and wet; sticky. Blood. I’d been bleeding. I must have fallen. Had I been running?

That’s when I heard them. Helicopter blades, slicing through the preternaturally quiet night sky like the sails of a large ship, whipping in a violent storm at sea.

Then suddenly, I was bathed in an intense white light. A spotlight. And I knew.
The enemy was in pursuit.

I squinted. The helicopter made a pass, the blades whipping up a breeze that stirred and rattled the corn husks as they rippled and swayed. Had I been spotted? Then the sound of the blades faded as the helicopter moved off into the distance.

I dragged myself into the row of corn and lay there, my legs wrapped around the stalks, face down in the dirt, my arms above my head, scarcely breathing, trying desperately to blend in. I felt the sting of a half-dozen mosquitoes dining on my arms, my legs, my neck. I willed myself not to move.

I remembered this cornfield. I remembered it all too well. The enemy had found me here once before, five Harvest moons ago.

But how? How had it found me a second time, after all these years? After all I’d done to evade it? To disguise myself? To vanquish what it was really after?

The first time, it’d taken body parts in trade for my very survival, and I’d gladly given them up. I’d fought back with all I had. It’d been taken from my body, examined, then destroyed. I’d hit it with the most toxic, targeted chemicals known. Its weakness. Its Kryptonite. There wasn’t supposed to be a second time.

I heard the copter circling back, the spotlight illuminating a wide swath in the dark of the night. It passed over me once again.

I dared look down to examine myself. I was clad in a ripped, muddied, white tank top. My chest wall, covered only in a thin, tight layer of skin, showed through. My artificial nipples made indentations in the thin, damp cotton. I was wearing a pair of boxer shorts so thread-bare that the material was nearly transparent. I’d seen them once before. Only once. Last time.

The chopper blades hovered overhead, loud and unyielding. The corn stalks stirred frantically, violently in the windstorm. Together, they sounded like a thousand metal marbles rolling down a playground slide. The enemy was closing in. I pushed my nose even further into the dirt, holding my long blonde hair tightly to my head. I held my breath. I lay perfectly still. No use. The spotlight, the enemy locked in on me.

It must be the boxer shorts. I tried to pull them down, get them off, fling them far into the field. But I couldn’t even manage to wriggle them to my knees. They clung to my skin like they’d been painted on.

On the front, they were a seemingly innocent blue and white plaid. But the back. I knew what was on the back.

A bulls eye.

The chopper was circling, looking for a place to land among the cornstalks. The spotlight blinded me; the roar of the engine deafening as it closed in, ready to make its vertical descent.

It had found me. Again.

Copyright 2011, Amy Rauch Neilson

Grab a Hold and Yank Yourself Up by Those Bootstraps

7 06 2011

Photo by Amy Rauch Neilson.

Yesterday was bittersweet. I feel like — know I should — be so happy and grateful. I had an extensive appointment with my oncologist and she confirmed what Don and I already suspected — the tumor in my breast is much smaller and softer. The chemo, she says, is working. What better news could a Stage 4 breast cancer patient hope to hear?

And yet, there was more. First of all, my oncologist was surprised to find that I already knew about the deal between Clovis and Pfizer (See Could the Future Be Now?) to manufacture an oral version of a PARP inhibitor. She herself had just heard the news at an oncology conference over the weekend. At that same conference, she learned of the upcoming Second Generation of PARP Inhibitors, among many other promising breast cancer treatments and therapies, that she is very excited about. Second Generation PARP Inhibitors already on the move when the First Generation has barely been introduced. So much hope for my future, for the future of other breast cancer patients.

I am grateful and happy. I’m ecstatic, actually.


But my counts were down — my platelets low. This postpones chemo for a week. No chemo this week; we’ll try again next week.

Why does that feel so frustrating, in light of the other, very good news I heard?

I’ve been contemplating that and what I’ve come up with is this: It’s challenging to feel out of control in your life, no matter how little or how much control you actually have. I have already been feeling so out of control since my Jan. 12, 2011 diagnosis. I go where I have to go, do what I have to do where and when I have to do it. My whole life, as well as my family’s life, revolves around it. So, it makes sense that the little control I do have — such as when I’ll be having my chemo treatments — is something I tend to cling to.

My “very little control” comes in the form of getting myself mentally ready to start a new round of chemo. It also comes in the organization of my calendar of chemo drivers and getting my son’s Summer Camp schedule nailed down. I’ve already submitted two calendars to his summer camp, and now with this new pothole in the road, I’m going to have to sit down and figure it all out again, submit #3 with the hopes that it truly will be his schedule for the summer — and that the camp owners aren’t going to get frustrated at my constant change of plans.

Yesterday, I felt frustrated at my body. Nothing I do will make it happen — my platelets rise — any faster. It takes time. I have to wait. I’m not very good at waiting. I never have been. Oh, the lessons God must be trying to teach me on this path and the frustrations He must have, dealing with a blockhead like me.

So, even if the very little control I seem to have these days comes in the form of a rock-solid chemo schedule — two weeks on, one week off, repeat — at least it’s some sort of control. Even if it comes in the form of getting my chemo driver and summer day camp schedule down in ink, at least it’s something I can be sure of. Or so I thought.

All of this reminded me of those times when we find ourselves in those unsavory parts of our lives, circumstances we don’t want to be in, for whatever reason, but circumstances that we are in due to choices we’ve made. What causes us to sink into those valleys — and stay — for extended periods?

Comfort, I think. The known — even when it’s miserable — somehow can be so much more comfortable and reassuring than venturing out into the unknown, even when we’ve got a pretty good shot at making our circumstances and our lives better. I think we’ve all been there. I know I have. There are times when you really have to yank on those bootstraps to pull yourself up and over.

So, even in these difficult times of a long-term chemotherapy regimen and limited choices, there is a small dose of comfort in the routine, that there is a routine, and that though there may be 50,212 other things I’d rather be doing than going through yet another infusion, at least it’s a known, something that feels like a bit of control at a time when my life feels like a planet spinning off its axis.

But the reality is, things are not static. They are constantly in flux.

I guess that’s just something I’m going to keep on having to try to get used to.

I need to go find those boots.

Copyright 2011, Amy Rauch Neilson

Fighting a Cancer State of Mind

6 06 2011

Kicking back at our annual Fourth of July Bash, 2010. Photo by Amy Rauch Neilson.

I catch myself doing it every so often. Looking forward to a holiday one minute, then, the next minute, wondering if I will be here to see it.

Do I believe I’m getting better? Absolutely. The physical evidence is there. My tumors have shrunk. And all around, I feel really good. Yes, I get tired a bit more easily. But as my husband Don often reminds me, my treatments have only reduced me to “mere mortal” status — down a few notches from Superwoman.

Still, those thoughts nag at me from time to time. Come on out of nowhere. Make my heart beat a little faster, maybe trigger a few tears.

It’ll be Easter, and I’ll find myself breathing a sigh of relief that I lived to see (or be) the Easter Bunny. Wondering if I’ll be here for Memorial Day. Or, my favorite holiday, the Fourth of July. Then my mind wanders on to Labor Day…and Halloween. Will I be here to take Theo out trick-or-treating in my sister-in-law’s neighborhood as has become our tradition? What about Thanksgiving? Will I be stuffing a turkey, watching the parade, wishing that evening that I’d had a bit more self-control at the table? And then there’s Christmas…that’s a biggie. Finding and chopping down the “perfect” tree. Lighting candles at Christmas Eve service. Watching Theo open his presents.

Each month, as I flip the calendar to the next page, I realize I’m still here. Not only am I still here, but I’m doing well. I’m doing life.

As I put more and more distance between my Jan. 12, 2011 diagnosis and today, I breathe a little easier, feel a bit more confident, find my thoughts turning less often to what might not be, more often to what I think will indeed be.

I may be fighting a Cancer State of Mind every day, but every day, it’s a little less than the day before.

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

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