“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





I Felt Like a Recovering Alcoholic

29 01 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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





Is that Whiplash I’m Feeling?

28 01 2011

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

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

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

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





How Am I Going to Make it Through?

25 01 2011

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

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

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

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








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