“Don’t Look Around. Look Up.”

19 11 2011

Photo Copyright 2011, Kathy Stadtfeld

Editor’s Note: A two-part article on me, my family and the BRCA genes appeared Sunday, Nov. 20 on the front page of  The Detroit Free Press. Part II appeared Monday, Nov. 21.  Also, the Canton Observer ran a nice piece on the Dec. 3 Sky Lights of Love Benefit. You can go to the Events tab on the blog homepage and click on Upcoming for more info.
When my close friend Kathy Stadtfeld shared this photograph with me, I was astonished.  I hadn’t yet shared the story of that January night with her, but somehow, she had captured on film the very vision of God’s pure white light as I see it in my mind’s eye.  I begged her to let me use it on my blog.  “But of course,” she said.

It was three-thirty in the morning on a cold winter’s night last January. I was sitting alone in my home office, exhausted from the physical and emotional battering I’d taken. In the two weeks leading up to that night, I’d found a lump wedged between my left implant and the thin layer of skin on my chest. I’d been through a biopsy and very quickly learned that yes, breast cancer is possible without breasts. I’d undergone surgery to have a port inserted on the right side of my chest, in anticipation of numerous rounds of chemotherapy. I’d been through a very painful lung biopsy to confirm what we already suspected — the cancer had spread to my lungs. I was a Stage 4.

That’s a heavy dose of hard reality for anyone, but especially for the mother of a five-year-old boy. Hours earlier, he’d  fallen into a deep sleep, not a care in the world, clutching his stuffed bear. I’d just finished reading to him about the antics of a monkey named Curious George.

Beside me in bed, my husband, Don, had finally succumbed after a string of sleepless nights filled with the terror of my diagnosis, his world closing in and crumbling around him. I couldn’t sleep. My tossing and turning disturbed Don, who would change position or roll over. I decided that if I was going to have insomnia, it’d best be someplace else. I crept downstairs.

Nighttime never seems darker than in January. Gusts of wind blew the tree branches to and fro, and they took turns scraping noisily against the windows, then the side of the house.

I was alone and completely exhausted. I had nothing left to give the night. No more tears, no more worries, no more ‘what ifs’. I was done. After what must have been an hour or more, I thought about heading back upstairs to bed, but couldn’t summon the energy. So, I sat there in the dark, at my desk, the mixture of snow and freezing rain pelting the skylights like so many forks striking champagne glasses at a wedding reception.

And that’s when it happened.

One minute, I was sitting there in complete darkness, silent, ridden with fatigue. The next, I was filled with a white light. A powerful, pure, all-encompassing white light.

I never saw the light, yet I knew instinctively that it was white. Then words: Everything’s going to be OK. YOU are going to be OK.

But the words weren’t audible. I can only describe them as a rapid-fire communication that came from someplace outside of me and entered my mind in a nanosecond. It wasn’t a conversation. It was an understanding.

I felt nothing but peace and serenity in those fleeting moments. And they were fleeting. As quickly as the white light filled me, the message was communicated, they were gone.

I was still sitting in my office, but I was different. I knew. I knew that it had been a message of comfort from God.

And though it took me a while to process, to truly absorb, what had happened that night, I’ve never had any doubt as to what it was. Not for a moment. Not even a flicker.

It’s going to be OK. I’m going to be OK. And I have a lot of work left to do here on earth before it’s my time. This I know for sure.

Yet, I’m a mere mortal and inherently flawed. And though I’d like to tell you that since that night, I’ve been able to push all fear, all doubt, all questions aside, and proceed with utter confidence, I haven’t. There are still times — and plenty of them — when I am wracked with sobs, days that are filled with despair, void of hope.

Perhaps my sister Julie said it best when she told me that during the toughest, most grueling of moments, I must not look around, but rather, up.

That’s a tall order when you’ve been hurled into a world of white coats, blood draws, chemotherapy infusions, regularly scheduled scans to see whether you are one of the lucky ones whose cancer is shrinking…or not. When, in the months that followed, you hear over and over again the words from the people here on earth who preside over your course of treatment:

Stage 4 breast cancer is incurable.

The average lifespan for a patient with your diagnosis is three years.

You think you can live 20, or even 10 more years? That’s just not realistic.

You will need to undergo some form of  chemotherapy for the rest of your life.

Each utterance is a blow, some harder than others, but all require psychological recovery time in much the way my body needs time to rebound physically after each chemotherapy infusion. It is hard to remember to look up when the script is playing out all around you.

I have my tough moments, times when I cannot imagine continuing this course of treatment that on numerous occasions has physically ravaged my body to the point that I’ve needed to be hospitalized in isolation, or transfused with platelets and bags of whole blood. Times when the ER doctor has looked at me and said, “You’ve got about a 50/50 chance of making it.”

Yet, I will continue. Because I know I am on the path to healing and that my work here, God’s work, is not done. Not only did He tell me so, but I’m watching it play out. Just this past week, a member of my medical team remarked that my results from nearly a year of treatment — 44 chemotherapy infusions — have been “robust.” I love that word and the context in which it was used. Indeed, my progress has been steady, with each scan revealing a continually shrinking cancer, along with areas that have fully healed.

Still, I know the road ahead will continue to have its twists and turns, its bumps and potholes. It is in those darkest of moments when I need to remember the light and the communication from that dark January night, and my sister Julie’s words. “Don’t look around. Look up.”

Copyright 2011, Amy Rauch Neilson

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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




The Gift Is The Present

5 10 2011
Monopoly Junior — one of Theo’s favorite games. Photo by Amy Rauch Neilson.

Where have I been?

Thinking. Pondering, Wondering. Questioning.
The last 10 days or so have been particularly harsh.
I lost a good friend, quite unexpectedly, to a brain tumor.
I lived through a couple of days while doctors ruled out ovarian and uterine cancer in my sister, Lisa.
And I’ve been giving a great deal of thought to my niece’s surgery next week. As a carrier of the BRCA 1 gene, and the daughter of a two-time breast cancer survivor, she has opted to take the preventive measure of having an elective double mastectomy and reconstruction.
So many times in the last couple of months, since we learned her surgery date, which, ironically, would have been my Dad’s 76th birthday, I’ve wished. I’ve wished that I could change things, that her risk of developing breast cancer without taking this drastic step wasn’t 88 percent. I’ve pictured myself running into pre-op — just moments before the doctors whisk her off into surgery — with the answer, the cure, whatever it would take to give her a surgery-free, cancer-free life, without the emotional and physical pain of the surgery.
But I don’t have the answer. No one can offer a more reliable preventive step than what she is about to undergo next week. And so we move forward in the realm of what is current scientific reality — this is the best we can do, she can do, for herself, her husband, her brand-new baby boy, her family. It’s what must be done. But it doesn’t make it any easier for any of us.
I so hoped and prayed over the years that we would find a better way before it was her time. But we haven’t, yet.
We will. Someday — and I believe it will be in my lifetime — we will have a better answer to genetic breast cancer prevention. I picture myself far down the road, decades from now, a grandmother, telling my grandchildren the story of what we had to do to save my life, my sisters’ lives, my niece’s life, all those years ago. The surgeries, the treatments, the frequent scans and doctor appointments. I picture the shock on their faces as they hear the stories of the harsh reality that was genetic breast cancer early on in the millenium, much the way I recoil when I hear the stories of the best medicine had to offer in the 1920s, 1930s and beyond.
We’ve come a long way, and we’ve got a long way yet to go.
But I know we will get there. Medicine has already made amazing progress, with new discoveries every single day that will impact our present and our future.
In the meantime, I try to be aware of the place I am, wherever that may be — walking a trail with the crunch of fall leaves beneath my feet, at the Tiger’s Playoff Game #3 with my bff Jodi Wolford Krueger, watching as Justin Verlander strikes out batter after batter, on the floor with my son, Theo, and husband, Don, playing Theo’s favorite game — Monopoly Junior.
The squeal of Theo’s belly laugh each time one of us lands on “his property” is a beautiful sound. You can’t help but light up with joy when you hear it — even if you do have to hand over your Monopoly cash.
The gift really is the present and one of the best gifts we can give ourselves is to stay there, to be present, to create an awareness of the moment we are living in, and all of the beauty that is there before us to enjoy, lest we miss it.
It’s not realistic or possible 100 percent of the time. That much I know.
There will be times when each of us must grieve a loss, or wonder why life has put something undesireable in our path, or in the path of someone we love deeply.
There will be those times. I’ve been experiencing quite a few of them lately.
They’re tough. Grueling, even. But we must not let them rules our lives. We can’t change them, but we can choose how we respond.
We must make a conscious effort to truly be in the moment whenever we can, taking in everything that is all around us, stretching our senses to the very brink, whenever possible, whether we find ourselves skiing a Black Diamond run or listening to the belly laugh of a six-year-old child.
Copyright 2011, Amy Rauch Neilson




Living with the Lump…But Only for Now

8 04 2011

This "Hop to a Cure Frog," a gift from my niece Danielle, reminds me that every day, were that much closer to finding a cure. Photo by Amy Rauch Neilson.

Last time is so different from this time.

The first time I was diagnosed with breast cancer was in March 2006. I was a Stage 1; the lump was the size of a blueberry and extensive testing, including a Sentinel Node biopsy, showed that, thank God, the lump was contained to my left breast.

I had a protocol of treatment that felt intuitive. It was through a lumpectomy on March 3, 2006 and the subsequent biopsy results that the margins around my tumor were declared “clear.”

Still, because I am BRCA 1 positive and the likelihood of a new primary was statistically quite high, I opted for a double mastectomy on April 14, 2006. Then, as “insurance” against the possibility that there was a rogue cell or two lying in wait someplace in my body, I opted for the recommended four doses of chemotherapy.

I began my protocol of Adriamycin and Cytoxan on May 31, 2006. I was done by July 28, 2006. I knew I would be. My schedule was pre-set – every third Tuesday, four chemotherapy treatments total. I could count the days, cross them off on the calendar, feel myself getting closer and closer to the end of treatment and the beginning of my new, cancer-free life. But best of all, I knew that the cancer was gone from my body and that all of the additional treatments I was undergoing were “just to make sure.”

This time around is so counter-intuitive. I’m not saying that the treatment approach I’m doing is anything but what it should be. It definitely IS as it should be and I am grateful to have it. The protocol just feels odd and takes some getting used to.

Because I was diagnosed as a Stage 4 this past January, with metastasis in my breast lymph nodes and both my lungs, chemotherapy comes first, surgery later. I understand the logic. First we treat and get rid of the metastatic breast cancer in my nodes and lungs, because that’s where the true danger lies — in its ability to continue to grow or even spread. Then we go for the lump in my breast.

This approach, I’ve learned, is called neoadjuvant chemotherapy – chemotherapy that is given before surgery to help shrink the tumor(s) before removal. Once we’re “down to the last tumor,” – which will likely and hopefully be the one in my left breast that started this whole thing – the surgeon will go in, remove my left breast implant, and get rid of that lump. Then, I’ll go through a series of radiation treatments to make sure we got every last cell.

That’s when the lump in my left breast will be gone for sure. And I’m so looking forward to that day. Because even though I understand the course of my treatment, it is psychologically difficult to walk around with a lump in your breast every day, knowing full well that this hard tumor the size of a shooter marble is cancer.

I feel it. I know it’s there. I want it gone.

All things in their time.

Copyright 2011, Amy Rauch Neilson





A Bunny Named MarTEN

24 02 2011

Theo's much loved, stuffed bunny, MarTEN.


I get these questions a lot: How much does Theo know? What do you tell him?

I share with him whatever I think is age-appropriate. Theo is a very bright, inquisitive five-year-old little boy. But he’s still a five-year-old little boy.

The first time I was diagnosed with breast cancer, Stage 1, March 3, 2006, Theo was six months old. That he was an infant was to our advantage, at least in the “what to tell him” part of the equation. I knew he wouldn’t remember all that our family went through in the months of my treatment – including my hair loss from the Adriamycin/Cytoxan chemo cocktail I was on.

In fact, it was a little bit humorous that both Theo and I were bald at the same time – his hair grew in very slowly from birth – and our hair seemed to grow in tandem until somewhere around Thanksgiving 2006, we both had a short ‘do!

This time around, my first thoughts after diagnosis were of Theo and what and how we would tell him. I knew there was an age-appropriate way to do it; I just wasn’t sure what it was. So, I called a close friend, Helene Rabinowitz, who had spent more than 30 years as a practicing psychologist, and bounced it off of her.

“Tell him in little bits and dribbles, as best you can,” she said.

“But how will I know when it’s enough, or too much?”

“Trust me,” she said. “You’ll know.”

And she was right. The first time I broached the subject with Theo, we were sitting on the couch together in the family room.

Theo had been asking me why I had to go to the doctor’s all of the time, and why Daddy had to go with me, too.

“Honey, Mommy is sick, and so the doctors have to give her medicine.” I went on to explain as best I could that I was going to get better, but it was going to take a little bit of time.

He listened for a while, then abruptly, he jumped down off the couch and went and picked up his favorite monster truck. He started racing it on the kitchen floor, accompanied by very loud “zooooooooooommmmmmmmm” ing sound effects. Helene had been right. I knew when he’d had enough.

Last week, we made much more progress – and some very amazing progress at that.
Theo has bunk beds in his room. He sleeps on the bottom bunk and I am the one who puts him to bed about 90 percent of the time, even in this period of chemo. I’m determined to do as much of our “normal” life as I possibly can throughout my treatment.

A few nights ago, we were laying together on his bottom bunk. There’s a little light that hangs down from the bottom of the top bunk, and all the lights were off except that one. I got out a book to read to him, as I do every night.

I always wear a tank-top to bed. I’ve always run very warm – my whole life. So, even on the coldest winter nights, I wear a tank top and pj bottoms. This is significant because it’s one of the few times Theo can actually see my chemo port. He doesn’t like it. He doesn’t like the incision next to it, where they went in to place it. He doesn’t like the port itself, which is under my skin but is a decent-sized lump – like the size of a silver dollar, raised.

He asked me what my port was for. I put down the book we had been reading and said, “Honey, that’s what the doctors use to give me medicine.”

He thought about that for a moment. Then he said, “Is what you have an allergy?”

“No, honey, it’s not an allergy.”

More thought and contemplation.

“Is it a germ?”

“No, honey, it’s not a germ.”

“Then, what is it?”

I started really calling upon my brain power to figure out how I could best explain this to him. Finally, I said, “Do you know what a cell is?”

“No,” he said.

“Well, our bodies are made up of all these teenie pieces called cells. They’re so small we can’t see them without a microscope. Our cells do good things for our bodies – they help us to grow bigger and stronger, and they repair our skin when we’ve got a boo-boo.

“But sometimes, cells can be bad. Mommy has some of these cells in her body right now. These cells are the ‘bad guys’ – like the bad guys vs. the good guys in some of the games you play. The bad guys try to take over, so the doctors give me medicine that makes the bad guys go away.

“Does that make sense?”

He nodded.

Then he said, “Mommy? Will I get what you have?”

“No, honey. What Mommy has isn’t something you can get. (This is true from the perspective of the BRCA 1 gene. He can be a carrier, but he won’t “get” genetic breast cancer.)

“Does that help?”

He nodded again.

“Mommy? Will you always have to have a port?”

“No, honey. When the doctors are done giving me medicine, they’ll take my port out.”

I thought the conversation was over and started to go back to reading the book.

That’s when Theo began talking to his stuffed bunny, whose name is MarTEN – not Martin. Theo insists the bunny’s name is MarTEN.

He told me that MarTEN was sick and had a port. He showed me where the port was on Marten’s body. Then he told me that since Marten’s legs aren’t working, the doctors were giving him medicine to make him all better. As soon as Marten’s legs start working again, the doctors will take his port out.

It was quite profound – the way this kid was able to understand and transfer this information I’d given him from me to his pet stuffed bunny.

Wow. Five years old.

Copyright 2011, 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.





Rapunzel…Let Down Your Hair!

27 02 2010

Me, sporting one of my wigs and a crown of flowers, with Theo at the 2006 Gaylord, Mich. Alpenfest

It took me nearly four years, but I finally did it. Yesterday. I donated all of the wigs, bandanas and a knit cap I wore when I was going through chemo. It wasn’t as easy as it sounds.

I came across them a couple of months ago, when I was cleaning out my closet. There was the wig with the long, thick blonde hair that I’d sometimes pull up into a ponytail or through the back of a baseball cap, the shoulder-length one with soft waves that had fooled everyone at my high school reunion, the sexy Marilyn Monroe platinum blonde one that I wore when I was feeling well enough for a night on the town.

As I searched a little farther back on the shelf, I saw all of the bandanas my cousin Christine had made for me — the wedgewood blue one covered in tiny silver stars, the bright yellow one with jewels sewn in the shape of flowers, the breast-cancer-ribbon pink one, and my favorite — the tie-dye one. At the very back, I came across the sable knit cap my friend Maureen had knitted for me over the course of the cold winter weekend when I’d first received my diagnosis. I took everything off of the shelf, packed it carefully and set it aside. I’d bring it with me to my next appointment at the Beaumont Breast Care Center.

Yesterday morning, I grabbed the bag and threw it in the car. I was off for my quarterly blood draw.

After my appointment, I stopped by the Resource Center. That’s where I met Ruth, the soft-spoken woman with the silver hair who oversees the Center.

“I thought maybe someone else could use these,” I said. As I opened the bag and began unpacking its contents, I found myself sharing moments from 2006. “I wore this tie-dyed bandana to a Tigers game in June, and here’s the wig I wore to my high school reunion. It did the trick — no one even realized I was going through chemo.

“This one — well, it made me feel sexy when my husband and I were out celebrating our 7th wedding annivesary,” I continued. “And surely someone could use this knit cap in weather like this,” I said, thinking of an older, bald-headed woman being pushed in a wheelchair I’d seen in the Cancer Center just a few minutes earlier.

Ruth listened intently and patiently as I made my way down to the bottom of the bag. There was a brief silence and then I looked into her eyes and, by way of explanation, said, “I’ve had this stuff for four years now, and I meant to donate it sooner. But I guess I was afraid to — afraid, somehow, that I’d be tempting fate.”

Ruth put her hand over mine, nodded gently and said, “Lots of women feel that way.”

I told her that I’d be celebrating my fourth anniversary cancer-free on March 3, 2010, and that I was finally beginning to feel a little more secure, a little more sure that I was going to be OK.

“I won’t be needing these anymore,” I said, perhaps more to myself than to her. I turned then, leaving everything sprawled on the table in her office,

The bandanas, the wigs, the knit cap have a job to do for other women who are going through what I once did, not so long ago. It was time for me — and for them — to move on.








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