Amy, Unplugged

25 03 2011

When the nurse accesses my port, the pressure feels a lot like being plugged in -- only I'm the outlet. Photo by Amy Rauch Neilson.

After today’s chemotherapy treatment, it’s 12 down, 36 to go. That’s the best estimate I’ve got at this point.

No one really knows, of course. Because it all depends. It depends on how quickly the Big Ugly Monster is wiped out of my body by the chemotherapy drugs and the power of prayer. Forty-eight treatments is a generous estimate, so I’m hoping that we’ll lick this thing far short of that.

After today, I could very well be a quarter of the way there — or even better than a quarter. That’s, of course, what I’m hoping for. What we’re all hoping for.

I need big-time prayers for Monday, as the first CT Scan of my chest has been scheduled for 2:30 p.m. I don’t expect to have results right away. The images will be sent to my doctors to be read. I hope for some clue as to how close we are to winning this war by week’s end, maybe sooner. Rest assured that as soon as I hear something, I’ll let you know.

In the meantime, I’m off to chemotherapy in a little while. I’m not feeling so brave this morning. In fact, I feel pretty awful, physically and mentally.

When I was at the hospital getting my treatment on Tuesday, the Clinical Trials nurse, Robin, went over my blood panel results with me. My white blood cell counts are way down. Something needs to be done about that. And that something comes in the form of a big shot called Neulasta, which I loathe, because it makes my bones ache for 24 hours afterwards.

But when Robin laid out the options — one Neulasta, or five Neupogen, OR, if I pick up an infection, a hospital stay because I have nothing with which to fight it, well, you can see why I chose the single Neulasta shot today, even if it is the size of a Cuban missile.

When my white blood counts are down, I feel yucky all around. Don said he can tell even before the lab results are in. I don’t rebound as quickly. I’m tired. I have constant nausea. I think I want to eat something, then after I make it or order it, I find that I don’t want it afterall.

So, the bright side is, after I have the Neulasta shot and wait out the aches and pains that accompany it, I ought to start feeling a lot better. And, there’s a lot to look forward to, as next week is my week “off” chemo.

But I still have to get through today. My friend Sandy Sherman Sarlund — we grew up in the same neighborhood and go all the way back to elementary school — will be here in a few minutes. I’m really looking forward to that. She’s bringing breakfast for now and dinner for later, and we’ll hang out a bit and chat over coffee. Then my friend Diane Baldwin will pick me up and take me to my chemo appointment.

I’m only getting one infusion today — the PARP Inhibitor — yet still, I’m feeling grumpy about it. I get so tired of the poking and prodding sometimes. I try to counter those feelings with, “Well, at least they can do something for me. At least there is a treatment and I’m getting it. At least they didn’t tell me at diagnosis, ‘You need to get your affairs in order.'” It could be worse.

Yet, somehow, today, even the “it could be worse” scenario is only brushing the surface. I want to get today’s treatment over with asap so I can come home and be with my family.

What do I dread most about the actual treatments themselves? A couple of things. The flushing of my port, for one.

My port needs to be flushed both before and after every infusion. As soon as that liquid enters my port, my mouth fills with a horrible, metallic taste. Blech.

And then there’s the insertion of the needle into my port itself. I do have a prescription for a lidocaine cream that numbs the area that I apply before leaving for the hospital. I only forgot to do that once. Believe me, you forget to do it once, and you’ll never forget again.

So, I don’t feel pain upon insertion. What I do feel is this weird pressure that I can only compare to the sensation of plugging something into an outlet — only my chest is the outlet.

I can’t wait til I’m back to life as usual, unplugged.

Note: Yesterday, I was having some technical difficulties with my blog site, so I’m not sure that yesterday’s blog entry went out via email to my subscribers. If you didn’t get a notice in your email box yesterday regarding a new post, know that there was indeed a new one — It’s called Lose Yourself.

Copyright 2011, Amy Rauch Neilson


Lose Yourself in the Moment

24 03 2011

Me and Theo, losing ourselves in the moment during a sack race last weekend. Theo won by a longshot. Photo by Tina Grindall.

Eminem, in Lose Yourself, raps:

You better lose yourself in the music, the moment
You own it, you better never let it go.

I love the beat, I love the message.

It works for me on so many levels. And here’s how.

When you’ve got something BIG going on in your life, something difficult, a struggle, a life change, it’s very difficult to ever push it completely out of your head. To get that breathing room, that sense of release and freedom from whatever’s weighing you down. Sure, you might be momentarily distracted — enough so that whatever you’re going through isn’t the first thought in your head. But it’s still there, in the back of your mind, draining your energy.

Enter my interpretation of those particular lines in Eminem’s Lose Yourself.

What does it really mean to Lose Yourself?

For me, it’s another way of saying, Live in the Moment, the Here and Now. The way young kids are able to do. Nothing else exists in the moment, nothing else invades their thoughts except what’s going on right in front of them in the here and now, be it a game of Whiffle Ball, a sidewalk chalk drawing, a curious bug on a leaf.

When you’re a grown up, it’s harder to do that. But it’s not impossible. In fact, it’s quite possible. You just have to work at it a little bit, find your sweet spots — those places, people, things that so engross you that before you even realize it, you’ve pushed every last bit of the struggle you’re working through out of your mind. And you’ve given that hat rack of yours something it really needs. A break.

Maybe it’s for five minutes. Or two hours. Or even a whole day.

For me, it can be — and has been — every one of those at one time or another.

In recent weeks, it’s happened to me at the pet store, the bowling alley, a kid’s birthday party.

The day we got the good news from my oncologist that the tumor in my breast, upon physical examination, seems to have shrunk quite significantly, is the day that Don, Theo and I went to the pet store. We walked in to get some crickets and a few pointers on amphibian care. Two hours later, we walked out with two new frogs — our red-eyed tree frogs, Goliath and Red.

But it was what happened in those two hours that was really important. I was so engrossed in walking up and down the aisles with Don and Theo, looking at the various kinds of frogs and toads, fish, birds, asking questions, observing, staring at them in fascination and wonder, that I completely forgot I had cancer.

My current struggle wasn’t even in the back of my mind. It was nowhere to be found. Gone. Lonnnggg gone, as Ernie Harwell used to say. When I realized that, somewhere on the way home between the Mickey D’s and Burger King drive-thrus (yes, it took both to make the whole family happy), I recognized how relaxed and restored my body felt from just that short break.

Same was true at the Bowling Benefit last Friday night. You wouldn’t think I’d be able to forget my diagnosis when that was the reason why we were all gathered. But in the excitement and pure joy of seeing people I hadn’t seen in years, making new friends, hanging out with those familiar to me, those thoughts fell by the wayside.

The next day, at my friend Tabitha’s daughter Lauren’s 10th birthday party, I found myself in a pink sack that barely reached to my knees, a picture of a pig on the front, hopping across the front yard and giving it my all in the sack race before collapsing in a heap at the finish line. My only focus in those sixty-odd seconds was how I could most strategically plot out my course. (And perhaps how to push a couple of kids out of the way. Yes, I am ohhh so competitive!)

Whether it’s a couple of minutes or a few hours, it’s good for the soul. It’s restorative. It’s healing.

So go ahead. Lose Yourself in the Moment. You Own It.

Copyright 2011, Amy Rauch Neilson

First the Student, Now the Teacher?

23 03 2011
"AUM Graduation"

Me, sharing my story before 3,000 people at my master's degree graduation ceremony, June 2008. Could it have been a sign of things to come? Photo credit: e.l.hubbard.

It was an ah-hah! moment. But not one I came up with on my own.

This one came from my friend Jennifer Hughes Alkoum, whom I’ve known since kindergarten. When I read the words she’d written to me, I had an ephiphany. I’d never thought of it the way she presented it, but once I did, it just made so much sense.

To make sure it wasn’t just me, I picked up the phone and called my friend Diane. I shared Jennifer’s words with her. And she said, “Wow. That is so profound.”

That confirmed what I’d suspected: I needed to share Jennifer’s words with you.

I asked Jennifer if I could share her words on my blog, as I can’t say it any better, express her idea any more profoundly, than she did. She said yes, so here they are:

“You once asked in a post why you have to go through this lesson again,” she wrote. “You asked: ‘Didn’t I learn and grow enough the first time?'”

Yes, indeed, that’s exactly the question I posted on this blog just a short time after my latest breast cancer diagnosis on Jan. 12, 2011. And the question I’ve been sending up to heaven and asking God over and over again ever since.

Sometimes, I just look heavenward, throw my hands in the air in exasperation, and shout, “Really?!!!! I have to go through this AGAIN?! Are you kidding?!”

We know that God not only works through us, but also speaks to us through people. I don’t believe it is such a big leap to say that God worked through Jennifer, communicated His words for me through her, in a way I could understand, touch, hold on to, truly hear: “I think that the first time around, you were the student,” Jennifer wrote. “This time, you are the teacher. And what an incredible teacher you are.”

It has never crossed my mind to think of it that way, to think of myself as the teacher this time around, in that kind of capacity.

I know the Great Teacher, the Great Physician, the Great Healer. I have a personal relationship with him that I treasure, one that has, ironically and to my great surprise, grown even stronger through my recent trials.

But I’d forgotten this basic truth: He depends on us, His followers, to be the Messengers of His Word, to be the example, to give all that we have, to share everything we can with the people around us, messages that can help to shed light on and pull them through their own struggles and circumstances.

Still, could I really be a teacher in this capacity? It seemed a job so, well, above me. One that I was unprepared for. One that should go to oh, I don’t know, someone beyond my mere mortal status. At the very least, someone more qualified.

It’s true that I spent more than a decade as a part-time Writing and English Instructor for Washtenaw Community College in Ann Arbor, Mich., loving my students with all my heart, so proud of their ability, in many cases, to overcome the tough and unfair circumstances they’d already encountered so early on in their young lives. So moved by their accomplishments as I watched them not only thrive and succeed in my own classroom, but go forward with the skill sets and confidence to become teachers, nurses, writers, lawyers. To pursue their passions and use their God-given talents to bring to the world what noone else can — what they alone were uniquely created to do.

But that was a “teacher” in the earthly terms in which we are used to defining it. It was a career — one that I trained for through years of schooling and experience. One where I applied for a job, got the job, did my job, collected a paycheck. The terms in which all of us think of as “employment, job, career.”

This, what Jennifer suggests, is different.

When I went through career counseling as a high school senior, pressing buttons on a computer screen, making choices on some grid that was going to tell me which careers I’d be best suited for — well, let’s just say this one that Jennifer describes didn’t appear anywhere on that grid. Nor did the training, preparation, or degree required. Nor could it.

What Jennifer speaks of is one where the training would be “Unique Life Experiences” and the position, well, is one that will never appear in the Classifieds along with a laundry list of Job Responsibilities.

Yet, I know what they are. At least, some of them, for starters:

Write about everything I’m experiencing as openly and candidly as possible, even if it means I feel a momentary twitch of fear when I press the “post” button.

Live the example as best I can, knowing that I will have “my moments,” that I’m but a mere mortal, and that’s OK.

Share all I know and learn with others who can then, in turn, spread the knowledge more quickly and efficiently than one person alone can do.

I can do that, and more. I will do that, if that is what He is asking of me. And I believe it is.

There have been signs all along the way. Hang in there. I’ll be sharing them in future blog posts.

Copyright 2011, Amy Rauch Neilson.

The Summer of My Discontent

22 03 2011

A Chicago Peace Rose from my garden serves as a reminder that even when I'm navigating rough waters, I can and will find peace again. Photo by Amy Rauch Neilson.

I never saw it coming. Then it hit me. Like a brick wall or a Mack truck, or any other large, unyielding object you can think of. A Supermoon, perhaps.

I don’t even know specifically what triggered it. I wish I did, because that would be some pretty important Need to Know Information to pass on.

It was June 2007. Chemo had ended in late July, 2006, and I’d had my final reconstructive surgery in December. My breast cancer had been a Stage 1. The tumor was the size of a blueberry and hadn’t spread to my lymphatic system. The surgeons got it all — I had what they call “clear margins.” The percentages were so in my favor — 98 percent cure rate — that I should have bought a lotto ticket.

I had the best possible case scenario in a very scary diagnosis.

Still, I had what could probably best be described as a nervous breakdown that summer of 2007.

I couldn’t eat. Everything tasted like sand. I lost 30 pounds in two months. I couldn’t sleep.  Couldn’t function. Couldn’t do much more, really, than cry most of the time. Yet, I wasn’t able to articulate why.

Don would come home on his lunch hour just to try to get me to eat something, anything. I’d sit at the island in our kitchen, a PB&J on a plate in front of me, as Don coaxed me bite by bite.

To everyone around me, friends, family, my behavior seemed, well, peculiar. It didn’t jive. Why now? they asked, kindly, compassionately, but curiously.

I didn’t have an answer.

But, little by little, I did summon the energy to do one of the things I do best – find resources, someone who could help.

I called a friend of a friend who is a genetic counselor at the University of Michigan. I knew I sounded like a nut case. Heck, I was a nut case.

That’s when I found the piece of the puzzle that had thus far eluded me. And here it is: About 50 percent of cancer patients wind up with clinical depression after they’ve gone through treatment. This, from the University of Michigan Department of Psych-Oncology (note that there is an entire department dedicated to this phenomenon):

“Am I going crazy?” Cancer patients often ask themselves this question, but according to psychiatrist Michelle B. Riba, M.D., M.S., the answer is usually no. “The distress is most difficult right at diagnosis and after treatment is complete, when the person re-enters his or her normal routine,” says Riba.

Emotional distress can be caused by any number of factors, including uncertainty about the future, pain, side effects of treatment, feelings of isolation or guilt, information overload, worries about recurrence, physical limitations, as well as financial and family problems. In addition, there may be psychiatric symptoms that pre-date the cancer diagnosis.

Furthermore, patients often don’t realize that chemotherapy, surgery and other treatments can directly cause or contribute to their psychological condition.

So is it normal for cancer patients to be depressed and anxious?

Riba says depression and anxiety are very common; 50 percent or more of cancer patients have depressed mood or anxiety or both at various times. Symptoms may include difficulty concentrating, inability to carry out one’s usual daily routine, intrusive thoughts and fears about their diagnosis and the future. “But it’s very important for people to seek professional help if these symptoms last for more than a few weeks,” she says.

I saw one of my chemo buddies at the infusion center last Tuesday, and something she said made all of this come rushing back. Last Friday was her last day of chemo. She was, of course, elated. But she was also feeling a bit tentative. Suddenly, she was going to be out in the world once again, on her own, no doctor looking over her shoulder every few days.

And that’s scary.

“I know they’re going to be checking me every three months,” she told me. “But what if? What if something happens in the meantime?” Like me, she’s a young woman with a young child and a husband to think about.

That’s when the summer of 2007 came rushing back.

It’s important for cancer patients and their friends and family to know this truth: Treatment doesn’t always end at the sounding of the last chemo bell. The physical part of the treatment, sure. But many of us need mental health support services at some point. We need to know how to reenter the world, go on with our lives, after having the pants scared off of us.

For me, that summer, it was the University of Michigan Psych-Oncology. That’s when I met Patty, who I still check in with about once a month. I am so grateful that we found each other. She has helped me to navigate many a twist and turn in my life and I thanked God she was still a part of my life when I got my most recent diagnosis.

If you’re a cancer patient or a close friend or family member, don’t overlook this important piece of the healthcare puzzle. There are people who can help. Give them a call, make an appointment, touch base.

Getting better truly is about treating the whole person, physically, emotionally, psychologically.

I blog for The Pink Fund every Monday. This post first appeared there on March 21, 2011. Look for more of my writing there.

Copyright 2011, Amy Rauch Neilson

Bracelet Requests?! I Haven’t Forgotten You!

21 03 2011

It's In the Genes Poster Boy Sean Norton modeling his very own! Photo courtesy of Sean Norton.

Just a quick note to say that if you sent a request for bracelets, I haven’t forgotten you!

I should be able to make my way through the whole list this week and get ’em in the mail.

Thank you for your requests — and patience!

Copyright 2011, Amy Rauch Neilson

Got Pictures? Post ‘Em on My Fan Page!

21 03 2011

My Little Cutie after bowling a Strike! Photo by Emily Sybert.

Got pics from Friday night’s Bowling Benefit?!

Well, then, don’t just sit there and read this! POST ‘EM!

Go to:


Post your pics.

You’re done! (And I’m deliriously happy!)

How easy is that?

Copyright 2011, Amy Rauch Neilson

Bowling and Blessings Beyond Belief

21 03 2011

And they said it couldn't be done! Ha! Here we are, the Bowling Crew, taking up lanes 43 and 44! There were so many cameras going off, I have no idea who took this picture! I think it was Sheldon from the Super Bowl!

Whatta night!

More than 200 people showed up to bowl, browse the Silent Auction, hug each other (and me) and screech, “I’m sooooooo happy to see you!”

It’s amazing to me how many perfect days God has blessed me with since my diagnosis. It would seem an oxymoron — Perfect Days and Stage 4 Breast Cancer. Yet, somehow, that’s exactly what’s happening. It must be way fun to be God sometimes (though I don’t envy Him his job), and be able to pull off the miraculous — especially when people least expect it.

Friday night around 6 p.m., Don, Theo, and I walked into the bowling alley and it was nonstop laughter and bowling, pizza and stories of old times and new until we rolled out of there a little after 10 p.m. I was so busy being social I only bowled two frames! Imagine! (Grin.)

The turnout was simply astounding. Cheryl Mato Buck, who grew up next-door to me on Greythorne Trail, was there with her hubby, Dave. So was Lisa Inman from just around the corner on Westmeath. I hadn’t seen Lisa in years, though we’d been in touch on Facebook — where I tease her mercilessly for being the one who chewed the toes off our Barbie dolls growing up! My former high school marching band drum major and classmate, Scott Orwig, was there with his wife, Sarah, and their four adorable little ones. (If there’d been a football field nearby, surely he would have made me run laps.)

Cindy Kahle had the great idea of coordinating a Group Photo. Then Sheldon, one of the employees at Super Bowl, grabbed the baton and arranged for all of us to gather on Lanes 43 and 44 when the last person finished the last frame at 9:00. Kristi Rugh Kahl had a wide-angle lens. And the rest, as they say, is history. I LOVE that photo and will treasure it!

People came from near and far. Carlton Wright drove in from Grand Rapids, and when I thanked him, shrugged and said, “No biggie. I wanted to be here.” I also caught him helping with take-down at the end of the night, collapsing tables and folding up the tableclothes we’d used for the Silent Auction. Big heart.

Speaking of big hearts, they were not in short supply. More than once, someone who won the bid on a Silent Auction item paid for the item — then told Kristi to “keep the change” — often in the neighborhood of tens of dollars, more than once, overpaying for an item by $50. What do you say to such generosity? What can you say, besides thank you?

Friday’s Bowling Benefit and Silent Auction raised more money than I could ever have imagined it would when Kristi Rugh Kahl told me several weeks ago that she was entertaining the idea. Kristi, along with Jodi Wolford Krueger, Michelle Wolford Ball, Trish Baden MacDonald, and Amy Pankas Allen, were the forces behind the logistics of the night, from reserving the lanes at the Super Bowl to getting the word out there, tracking down items for the Silent Auction, setting up, taking down, keeping everything organized and running smoothly. Thank you, ladies. The auction may have been silent, but my gratitude is not.

So many people gave so much of their time, their energy, themselves. Carrie Ramsay handmade some of the most beautiful jewelry I’ve ever seen. Rumor has it she spent more than a week intensely focused on getting the earrings, bracelets, and necklaces made for the event. She also presented me with a special one made just for me — white Swarvorski crystals on Sterling Silver with a beautiful silver breast cancer ribbon dangling from the end. Carrie chose those specific crystals for their healing power.

My cousin Mary Dougherty hand-crocheted a beautiful, breast-cancer themed blanket with a hot pink stripe. Kristi’s parents, Sheri and Richard Torch — who have been a second set of parents to me since I was a teenager — created a beautiful coffee-themed basket with handmade towels and got it to us all the way from northern Georgia. They’ve both been wearing my neon yellow bracelets faithfully since the moment they received them in the mail. And the list goes on…

People who know me gave, but so did people who don’t. Some were friends of friends, my sister’s neighbors, Jodi’s boss. Janet from Miche Bags donated some of the night’s hottest items. Checks came in from people who live out of state and others who could not attend. It was just an outpouring of love that has deeply touched me, Don, and Theo. As Theo often says to me, “Mommy, my heart is overflowing with love and I’m giving it to you.”  We definitely felt the overflow.

A few weeks ago, Kristi set up a designated account for the Amy Rauch Neilson Benefit. All of the proceeds from  Friday night were deposited into that account and, bright and early this morning, I picked a medical bill out of the pile — one that had really been bothering me in its unpaid status — and Kristi took care of it with a phone check from the account. One down. What a relief.

Thank you, everyone.

Whatta night!

Copyright 2011, Amy Rauch Neilson

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