An Early and Unexpected Birthday Present

28 11 2011
Me, about to light the candles on one of my favorite “birthday cakes” — pumpkin pie! — in 2007, one year after finishing treatments for my Stage 1 breast cancer diagnosis in 2006. And yes, those are my boys — Don and Theo – in the background.

Let me tell you about my birthday. When my birthday is coming up, EVERYONE KNOWS. I make sure of it. And it’s always been that way.

Until this year. I can’t put my finger on exactly why I feel differently about my birthday this time around. Of course, there’s the cancer diagnosis from January. But to me, that should be MORE reason to celebrate November 29, 2011. Still, so far, I’ve been unusually quiet about the occasion.
When it comes to my birthday, I’ve got a rep for being downright obnoxious — in a way that has earned me a label as a prankster. One year, when I was an English/Writing Instructor at Washtenaw Community College in Ann Arbor, Mich., I told my freshmen Composition I class that there were “just 14 shopping days ’til my birthday,” and that if they wanted to view my Birthday Wish List, they could go to www.amysbirthday.com. Of course, the site didn’t really exist, and after watching several of my freshmen students (poor things) taking copious notes, I let them know that it was all a ruse.
But I have always loved my birthday, and the occasion has grown from my birthDAY to my birthWEEK and finally, in recent years, my birthMONTH! I’ve been known to call close family and friends to remind them that there are “only 28 shopping days left til MY BIG DAY,” and to continue the countdown via text and email, unti they are weary, though I am still grinning.
So, why the kabash on the joy I feel every year about the celebration of the day I came into this world? Is it the new diet, and the fact that I can’t eat birthday cake? No. I don’t think that’s it. My best guess is that perhaps I feel some sort of irrational need to stay “under the radar” this year — lest some power out in the universe hear the ruckus and decide that this birthday is my last.
Or, maybe it’s more simple than that — that somewhere, deep down inside, I hold a terror in my heart that that could simply be true. That’s the way I felt yesterday afternoon, as I unwrapped bulbs to put on the Christmas tree. Each time, I wondered if it would be the last time I’d be unwrapping and hanging that bulb.
Then came today. Today, I received an unexpected birthday present.
Last week was supposed to be a chemo “on” week, but my platelets — low enough to send me to the ER on Nov. 18 — still had not recovered. Typically, after one week of rest, they will bounce back and I can get treatment. So, this morning, quite expecting that this would be Day 1 of four infusions over the next 11 days, I got into the car with my cousin and chemo driver, Lori Parker, and off we went.
When we got to the hospital, my blood counts told a different story. And truly, I was surprised. I’ve been feeling a little tired lately, it has indeed been a looonnnggggggg year, but what could I — what could anyone expect after 10 months of chemo? My counts — even with the extra week of rest — had not recovered. My platelets were actually even lower than they had been when I was in the ER. Time is what it takes to create platelets and send my counts back into the normal range. But a lot of time had elapsed, and still, nothing. To add to the issue, my white blood cell counts were low and had also not budged.
What to do? That was the question.
So, me, my cousin Lori, my Physician’s Assistant, and the nurse from Clinical Trials all put our heads together and ran through the options. What is becoming more and more clear to everyone on my team as I continue this brutal protocol (my current protocol in comparison with others is quite taxing both in the time commitment and the potency/side effects of the drugs I’m taking) is that my body has just had it. I’ve been saying that for weeks to those close to me: This chemo regimen is really wiping me out.
I feel like I’m in the boxing ring and every time I get knocked down and the referree stands above me, counting to 10, it’s taking me til 8 or 9 to get back up, rather than the 2 or 3 of several months ago. And I mean that from not just a physical, but also a psychological, standpoint. I have a pretty high threshold for the pain and misery the treatments have brought this year, as the trade-off of LIVING is something I cannot put a pricetag on — but even I feel like I’m at my wit’s end. And that’s exactly what my PA saw in me this morning.
Still, the question remained: What to do?
The options are better than I imagined. Though I’ve always known that there is an arsenal of breast cancer drugs from which my doctors can pull in our continued quest to battle the monster and win, I didn’t realize just how much some of these drugs could change my life — for the better. Not only in their efficacy, of course. But also, in my quality of life. That’s a biggie, as lately, between the beating I’ve been taking via the chemo drugs and the huge adjustment I’ve had to make with the new anti-cancer diet that I’m on, I’ve been watching my quality of life wither.
Though my blood counts do eventually rebound each time into a range that allows me to go through yet another round of chemo, each time, they not only bounce back a little more slowly, but they fail to reach the threshold of previous levels. This, in short, means my bone marrow is having a very hard time recovering.
What to do? Perhaps move to a different chemotherapy drug. While my results this year have been very good — after all, my cancer has not grown and has actually shrunk some — were the PARP Inhibitor in combination with other chemotherapy agents the “silver bullet,” as my PA pointed out today — I’d likely be in remission. The results are good, but we can hope for — and work toward — better. And, with the message my body is clearly sending out — now might be the time. I may be moving to a new drug as early as next week. My oncologists will be discussing my options this week and I’ll learn more at next Monday’s appointment.
What does this mean for me? Things I hadn’t even yet considered; places I hadn’t yet allowed my mind to go. The drug that was proposed today is an oral form of chemotherapy with little toxicity and few, if any, side effects. And if I do exhibit the side effects, the dose can be adjusted accordingly to eliminate them.
The “frosting” on this “birthday cake” is that this new drug would give me back something that has been steadily waning over the course of the year — my quality of life. I would no longer need to go to the hospital three days a week as part of my treatment protocol. Instead, I would take this drug orally, at home, 14 days on, 7 days off. I would need to see my doctor only once every three weeks, just to check in.
Instead of spending my days lining up chemo drivers and people to pick up or drop off Theo when I’m just too sick, or drawing up a schedule that includes days when I KNOW I’ll be sick, I could potentially and very hopefully return to a more normal — or even a normal — work schedule. What a thrill that would be! And no longer would so much of my life revolve around my chemo schedule — like travel — as my chemo would be “portable.” Should we decide we’d like to get away and visit friends, I don’t have to search the calendar for my “week off” — and then wonder if it really will be my week off  — or if chemo will be delayed for any number of reasons, our plans thrown by the wayside.
The best part of all is that this drug has proven to be very successful in breast cancer patients and is one that I could stay on for years, should I need to. Even if I go into remission, this is a drug that I could continue to take in order to keep me there. A maintenance drug.
And, as my PA pointed out, this drug would continue to buy me time as we wait for the even better ones that are coming down the pike. Next week, she’ll be in attendance at a breast cancer conference in Texas, where she’ll be learning all about what’s on the cutting edge in breast cancer treatment.
All of this came as a complete surprise to me this morning — a delight. And just ask Don — surprising me is one challenging task. (He long ago nicknamed me “micro” because he says I’m such a micro-manager.) But indeed, I was surprised, and it couldn’t have come at a better time.
I’ll learn more next Monday, but, as I left the doctor’s office this morning, the potential of moving over to this new drug, based on the feedback from my medical team, seems quite real and very likely. Not only that, but my exam today went very well. My team is really pleased with how well I’ve battled the cancer this year. I do not exhibit the signs of a “cancer patient” — like shortness of breath, cough, extreme fatigue, or “looking sick.” My lungs sound beautifully clear as a church bell, ringing through the air on a crisp, clear Sunday morning.
I’ve been lucky enough to carry on with much of my “normal life” since my diagnosis — as you know from reading my blog posts. There has still been plenty of real life there for the taking — and I’ve been pouncing on the opportunities. Now, it looks like we might be moving forward into a place that would allow me even more of those opportunities. What a thrill! Way to make me smile!
Happy Birthday to Me. And, when I blow out the candles on my cake tomorrow (even though I CAN’T eat it), you know what will be on my mind as I make that magical wish.

Copyright 2011, Amy Rauch Neilson

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Bright Lights, Big City

27 08 2011

Theo waking up to the Windy City on his sixth birthday. Photo by Amy Rauch Neilson.

Theo woke up on the morning of his sixth birthday, August 22, 2011, threw open the heavy room darkening curtains and the whisper light sheers behind them, and peered out the window in awe and amazement.

Twenty-three floors below, the city of Chicago was wide awake and had been for hours. Tourists and city dwellers alike were bustling to and from their destinations. As for us, we, too, had things to do, places to go, and yes — even people  to see!

Our plans for Theo’s birthday were to find an awesome breakfast spot, hop on a water taxi and spend the day at the Navy Pier. Check, check and CHECK! We learned of a breakfast place just a few blocks from our hotel called The Yolk. I LOVED it — from the bright, mustard-colored decor to the outside terrace where we were seated, and yes, of course, the MENU! Think cinnamon roll french toast with a side of fresh blackberries, blueberries and strawberries. I also had the best glass of freshly-squeezed orange juice of my life — so good I ordered a second! And I’m not even a big fan of orange juice.

Pure heaven.

Next, it was off to the riverfront a few blocks away to catch the water taxi. How cool that in Chicago, you can travel by foot, car, traditional taxi, or water taxi!  Theo wanted to sit on the top deck of the boat, where the summer breeze rippled through our hair and the sun warmed our faces.

We got off at the first stop and began wandering the Navy Pier. There’s the famous Ferris Wheel — which I happily rode by myself, as both Don and Theo are wary of heights. A miniature golf course on which each of us had a hole-in-one! The Children’s Museum and Store, where Theo spent his birthday money.

Though I have had the privilege of traveling across a good part of the globe, Don and Theo are newbies. Neither of them had ever been to Chicago. For Don, the biggest city he’d ever seen was L.A., many years ago, when he was there on business, not pleasure. He spent most of his time in buildings, rather than outside, taking in their enormity and majesty. So, truly, they were both new to Big City Life.

But why the quest to share places near and far with my family? Couldn’t we accomplish many of the same goals closer to home?

Yes. And no.

Yes, because we live in a beautiful place where opportunities to embark on an adventure and enjoy family time together abound. And we consciously take advantage of that on a regular basis, be it a trip to the Cider Mill, a boat ride, a board game on the family room floor.

No, because there’s nothing like being away from home and the daily responsibilities and distractions of dishes, laundry, pet care, and discovering, together, all this wondrous planet has to offer. That’s how I grew up, and it’s what I want to share with both Don and Theo.

Some of the best memories are the times I traveled with my family when I was growing up — my parents and my sisters, Julie and Lisa. We saw the Grand Canyon, Hawaii Volcanoes National Park (I still have a piece of black lava from that trip), New York’s Central Park from a horse-drawn carriage, San Francisco’s Golden Gate Bridge.

But perhaps just as important as the what we saw is the why we saw it.

My Mom was first diagnosed with breast cancer in May 1973, when I was four years old. My Dad, who, along with two of his brothers, owned Rauch Brothers Paving Co., often worked long hours in his quest to make our family’s life easier than the one he’d experienced alongside 11 brothers and sisters in the years following the Great Depression.

There was nothing more important in the world to my Dad than his family. And so, when my Mom was diagnosed, he took a serious look at the long hours of work he put in to build his company. Then, one day, he sat us down and told us this: No matter what,  from this day forward, we are going to take at least one family vacation a year, every year, no exceptions.

And we did.

That’s been my philosophy and my intention for my own family, even before my first breast cancer diagnosis of Stage 1 in March 2006. After that diagnosis, it became even more imperative to me. And I’m sure I don’t need to point out how the news of my recurrence this past January accelerated my desire.

I have the desire to share the wonders of the world with my family, sans the panic of doing it just because I’m currently undergoing breast cancer treatment. I believe from the very core of my being that God has work for me to do on this planet, that I’m going to go into remission, and that I’m going to be here for a long time to come.

Still. Time passes quickly, and if we don’t set intentional goals for ourselves, too often, we look back and see the missed opportunities. Our goals for ourselves, for our families, have to be intentional and conscious.

When Theo was born, Don and I decided that every year, at the very least, we would plan a family get-away. Now that he is in school, our tradition is to plan at least three nights away together as a family in the weeks before the first school bell rings.

Some of the people in our lives asked us why we would do such a crazy thing — travel to Chicago the day after Theo’s big birthday bash — with my cancer diagnosis and tough chemo regimen. I think it’s also safe to say that though others may not have articulated it, it was on their mind. Why now? Is it safe for Amy’s health? Isn’t it just going to wear her out? Can you really afford to be off galavanting in another city, with the financial responsibilities of medical bills on top of Amy’s reduced ability to work?

The real question is: Can we afford not to?

My Dad, although a good steward of our family’s finances, also used to say that you can always make more money. But time spent and experiences together — those are priceless.

Indeed.

Copyright 2011, Amy Rauch Neilson





I Shot Myself in the Stomach…

29 04 2011
Neupogen shot. Photo by Amy Rauch Neilson.

today at lunch. Right after making myself an egg salad sandwich.

But it wasn’t the first time. Not for the shot or the egg salad sandwich, for that matter.

While it’s true that my chemo regimen was delayed a week, I still didn’t get off scott-free. I had to take a series of three Neupogen shots. The nurse gave me the first one at the hospital Wednesday, at Noon. Then she sent me home with two more.

Usually, Don gives me the injections. But because they need to be timed at precisely 24 hours apart, this round, that took me to Noon on Thursday and Noon again on Friday, when Don’s at work.

Could I find someone to give it to me? Sure. But that’s a lot of work and unnecessary, really, when I can do it myself. Get it over with. Get back to my sandwich.

I was just talking to a Stage 3 breast cancer survivor last night who mentioned that when she read that I’d still be taking Neupogen shots this week, she felt for me. She’s been there, done that, and she knows how painful the side-effects of these shots are.

Not the tiny prick of the needle. That’s no biggie. But the after-effects. Neupogen has a job to do — working in the bone marrow to generate more white blood cells and help to boost the recipient’s counts. That job is accompanied by aches and sometimes sharp bone pain.

The first time I had such a shot was in the summer of 2006, when I was undergoing treatment for Stage 1 breast cancer. I recall my shock at how much the stimulation of the bone marrow hurt. I remember calling my sister, Julie, and describing to her that for the first time in my life, I was aware of every single, individual bone in my skull. Who knew there were so many?

Typically, the side-effects wear off 24 hours or so after the last shot. So, by Noon tomorrow, I bet I’ll be feeling like a million bucks. Let’s hope so. And let’s hope the Neupogen does its job so that next week, my body will be ready for chemo, Round 5.

It’s not fun, but I’ve learned to stay on top of the pain by getting some Motrin into my system beforehand. Distraction is also a beautiful thing. Tonight, I’ll be making a special dessert for my close friend Diane, who is graduating from the University of Michigan tomorrow with a master’s degree from the School of Education. I’m so darned proud of her. I can’t wait to see her cross the stage at Hill Auditorium.

And just wait til she sees the little blue and gold frosted cupcakes adorned with tiny, edible mortarboards and tassles afterwards.

Copyright 2011, Amy Rauch Neilson





There’s Still Cause for Celebration

3 03 2011

Fireworks are one of my favorite sights in all the world. Photograph Courtesy of Smashing Magazine.

Today would have marked my five-year, cancer-free anniversary.

What that means is that five years ago today was the last time that any cancer was found in my body, not the last time I underwent treatment.

I was diagnosed with breast cancer on March 3, 2006 following a lumpectomy to remove what the doctors suspected was breast cancer. Indeed it was, though thankfully, only a Stage 1, the size of a blueberry, completely contained, no lymph node involvement.

Chance of being cured at that moment in time? 98 to 99 percent – particularly if I underwent a double mastectomy, four rounds of “just in case” chemotherapy, and an oophorectomy. Which I did. And it worked.

At least until the defective BRCA 1 gene I carry refired in the smallest bit of leftover, healthy, microscopic breast tissue, causing the tumor that wedged itself between my left breast implant and my reconstructed, “fake” nipple. That’s what grew into the grape-sized tumor that I detected on January 9, 2011, quite by accident.

Don, Theo and I had been out back, ice-skating on the lake. We came in when our ears were burning from the cold, our skate blades dull. I flopped on our couch and pulled up a blanket to warm myself. And that’s when it happened.

I brushed my forearm over my left breast as I was pulling that blanket up and over my chest when I felt it. A weird, marble-hard sensation through the sweatshirt I was wearing. I reached down under my sweatshirt and felt it again. Then I called Don over. He felt it. “Was this there before?” I asked him.

“No,” he said.

And just like that, we were thrust into this latest diagnosis, Stage 4 breast cancer. Just like that, our world was turned upside-down. Again.

Don and I, along with all of our friends and family, had been ticking off the days, weeks, months, years to that five-year, cancer-free date that would have been today. It wasn’t to be.

But that doesn’t mean today is not cause for celebration. I may not be cancer-free, but I am still here. I am still a Survivor! And a five-year Survivor at that!

Tonight, I will celebrate with the members of my girls’ group, the Six Pack, at Famous Dave’s BBQ. If you happen to be at Famous Dave’s tonight, look for me.

You’ll know me when you see me. I streaked my blonde hair Breast Cancer Pink — actually, fuschia — this morning.

Copyright 2011, Amy Rauch Neilson





Hair Today, Gone Tomorrow? Maybe, Maybe Not.

18 02 2011

Me, hairless and happy, at Alpenfest, Gaylord, Mich., July 2006

Two days ago, I called and made an appointment for an up-do. We have a family wedding this weekend and I love to have my hair done up for special occasions.

That call was actually quite ballsy, quite brazen of me.

That’s because, by the time my appointment rolls around on Saturday afternoon, I might not have any hair to “do.” At which point I’ll have to call my hair stylist and say, “Yeah, about that appointment…I need to cancel. My hair fell out overnight.”

Overnight?!

Yes, that’s a realistic time frame for how it happens. It not only happens quickly, it happens on schedule.

During my last go-round with breast cancer and chemo in the summer of 2006, it was exactly as my doctors predicted. Seventeen days after my first treatment, my hair began falling out. Within 24 hours, I was bald.

We were at a family reunion in the mountains of northern Georgia at the time, camping out in a pull-behind when I lost the first patch. I had just showered and blown my hair dry. I was standing in front of the mirror over the tiny bathroom sink when it happened. I ran a comb from my scalp to the ends of a section of hair. I felt an odd “release,” and when I looked at the comb, I saw that my blonde tresses were enmeshed in the teeth.

I remember thinking, “Oh geez. Here it comes, and there it goes.”

I tried to salvage it as best I could, but by the next morning, most of it lay on my pillow. I
acknowledged that it was a lost cause and I shaved my head. Even is better than patchy. Trust me on that.

When it comes to chemo and hair loss, it is literally hair today, gone tomorrow.

But this time could be all together different.

Yes, it is possible to go through chemotherapy treatments and not lose your hair in the year 2011. Though not even five years have passed since I last went through chemo, it’s a whole new ballgame. A paradigm shift, if you will.

In 2006, I was on a chemo regimen of Adriamycin and Cytoxan. Probability of hair loss: 99 percent.

This time, I’m on a regimen of Gemzar, Carboplatin and BSI-201 — the PARP Inhibitor. Probability of hair loss, according to the Clinical Trials nurse, Robin, about one in six. If you do the math, that means I have about an 83 percent chance I won’t lose my hair this time.

Why is that so important at a time like this? Lots of reasons, the least of which is vanity.

Last time, my son was an infant. He didn’t know the difference. This time, he’s a bright, five-year-old little boy. He’ll know the difference. And I want to shelter him from the blow of my illness as much as I can.

Last time, as a Stage 1, I only had to do two months of chemo, and then my hair began growing back. I had a short ‘do by Thanksgiving. This time, as a Stage 4, I’m looking at about nine months of chemo. I’d be bald a long, long time.

Last time, every time I was out and about sans wig, people stared. Sometimes, they looked on with pity. Other times, they stopped me and asked questions.

I don’t have to tell you that I don’t mind talking about what I’m going through. But I don’t want to talk about it all the time. Keeping my hair means I can go out into public, a cancer patient incognito, if you will, and enjoy being with my friends and family. No stares. No looks of pity. No questions from strangers.

So, when will I know? According to my doctors’ calculations, if I’m going to lose my hair this go-round, it ought to happen any day now. But, if it doesn’t happen by Tuesday, I very well could be…home free!

Last night, we had dinner at my bff Tabitha’s house. After we finished off the spaghetti and piled our plates in the sink, we were sitting on the couch when she noticed. In the last few days, I’ve taken to twirling a lock of hair around my fingers, and then giving it a gentle, almost imperceptible tug. Most people wouldn’t have caught it. But Tabitha knows me too well. She did.

“Honey,” she said. “Try not to get your hopes up too high. I don’t want you to be devastated if it does fall out.”

“It’s not going to,” I said. And I made her reach over and do “the tug.”

My Dad used to say, “If I were a betting man…”

Well, I am a betting woman.

And I’m betting that this time, I keep it.

By Tuesday, I’ll know. And I’ll let you know.

In the meantime, please “root” me on. Pun fully intended.

Copyright 2011, Amy Rauch Neilson








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