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





“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





Guest Blog: Sky Lights of Love Benefit December 3, 2011

7 11 2011

By Kristi Rugh Kahl


Imagine if you went to your job every day and it made you feel sick to your stomach. Not just the thought of going to that dreaded place, but so physically sick that you couldn’t get off of the couch or out of bed when you got home. Your head pounds and you feel queasy. It’s difficult to eat, but you know you have to in order to keep up your strength. You’ve got to go back to that job. Your survival depends on it. Then imagine that after two weeks of doing this, you wait for your paycheck thinking, OK, I guess it’s worth it. We’ve got to pay our bills. We have a little boy to feed, a household to run.

But the paycheck never comes. Yet, you have to keep going back, two weeks on, one week off. Repeat.

Sad but true, this is the life of most cancer patients on chemotherapy. Not only are they unable to work, or, like Amy, only able to work limited hours, but the bills continue to pile up. The old bills — like the utilities and the groceries — and the new bills: medical. Amy is blessed to have health insurance. But even with that safety net, there are copays and percentages that have added up to thousands of dollars since her January 12, 2011 diagnosis.

Amy’s schedule is no different.  Every two weeks of chemo (what the doctors call “a Round”) takes its toll on her body and puts a financial strain on her household.

A couple of weeks ago, one of her two employers called to let her know that they could not wait any longer for her to get better. Yes, they loved her writing and editing work and found her to be very talented in both arenas. They had recently told her she was “the whole package” — and they meant it. She was offered other writing work that didn’t have the hard and fast deadlines that her editing work for the company required. She took them up on that offer, and understood, but it broke her heart to lose the copyediting position she had, working with a team she loved.

When she called me to tell me what had happened, one of the last things she said to me during the conversation was this: “It was so very hard to know that I can do the job and do it well. When I was healthy, they loved me and I loved working for them. All those years of education and various jobs in the trenches had paid off. Yet, that day, as I held the phone to my ear, I realized that while my mind wanted to scream, Don’t Replace Me! I can do the job! I want to do the job!, my body was telling me a different story. I knew they needed someone in that position who was healthy. Right now, that person isn’t me. And there’s nothing I can do about it besides keep going to chemo, keep praying and doing everything I know to do in order to get better as soon as possible.”

Yes, this is the price for survival, but it doesn’t have to be so hard if we all come together to celebrate her life and help defray her expenses.

When I first mentioned the idea to Amy, she loved the vision of a gathering of people and the lantern release over the lake. But she wasn’t, at first, comfortable with the idea of another benefit for her family. She didn’t want to keep asking so much of so many people. That’s when I told her that asking for help doesn’t mean you’ve failed; it means you’re not in it alone. And that is the theme of the recently released song by Martina McBride, I’m Gonna Love You Through It, that inspired this event (see more on this personal story about Amy and Don on the Events page).

In celebration of Amy’s birthday (November 29), we are hosting a benefit called Sky Lights of Love on Saturday, December 3, 2011 at the Van Buren Township Park.  We will gather at 4:30 p.m. and, at 6:00 p.m. sharp, we will release the lanterns from the Lookout Point over Belleville Lake — a place that is near and dear to their hearts.

The cost per lantern is $10 and the proceeds will go to the Amy Rauch Neilson Benefit Fund to help Amy with her ongoing medical bills and expenses. 

If you can’t attend, you can still participate by ordering a lantern. We will release it in your name or the name of a loved one.  Or if you’d like, please consider giving a donation. 

We all know times are tough, but they are even tougher if you are fighting for your life. As for me, the time is now for my bff Amy. Together, we can make it better by celebrating life and collectively lifting all of our spirits as we watch hundreds of lanterns filled with pure, white light rise up into the night sky. I hope you can join us on December 3, 2011!

Lanterns available by PRE-SALE ONLY – purchase by 11-20-2011
Purchase Lantern or Make Donation Below:

  • 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 only.  Purchase 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! 




This Yellow Powder Shows Promise — And I’m All Over It!

26 09 2011
Turmeric: A powerful spice that shows promise in both preventing and treating cancer. Photo by Amy Rauch Neilson.

It’s a pungent yellow powder. You can buy it at just about any grocery store. It’s been around for thousands of years. And it’s cheap. The bottle I bought two months ago was $5.99, and there’s perhaps still a quarter of it left.

I use it every single day without fail. It’s a spice called Turmeric and it’s been used liberally in Indian cuisine for milleniums.

I consider it a miracle in both the prevention and treatment of cancer. And I’m in good company.

My close friend Scott Orwig, who is a prostate cancer survivor, turned me on to this powerful spice a few months ago. He and I trade recipes and articles on the latest developments in cancer treatments like two kids with a stack of baseball cards.

Over the weekend, he forwarded me an article straight from the research laboratory at the world’s most renowned cancer institute: M.D. Anderson in Houston, Texas. That’s where researcher Bharat Aggarwal has been studying the medicinal use of spices, like the turmeric he grew up eating in his native India. Much of his research has focused on curcumin, a substance used to make turmeric and a chief ingredient in curry sauces.

Turmeric has already proven itself in studies several times over — and it continues to do so. “There were at least a half a dozen clinical trials that appeared last year alone on curcumin, where as little as 100 milligrams is enough to down modulate all the inflammatory biomarkers in people,” Aggarwal said.

Yes, people. We are not talking about animal trials that have not yet reached the testing stage on humans. We are already there.

I’ve never been particularly fond of Indian cuisine, so until recently, Indian spices haven’t been a part of my regular diet. But they are now — particularly Turmeric. I eat it every single day, 1/2 teaspoon mixed with black pepper and thrown into a bowl of very healthy minestrone soup. (In order to be assimilated by the body, turmeric must be mixed with black pepper).

I make a batch of Classic Minestrone once a week, then put it into my fridge so it’s easy for me to grab a bowl every day. Here’s the recipe for the one I make — quick, delicious and extremely nutricious:

2 cloves garlic, minced
1 medium onion, chopped
1 T extra virgin olive oil
1 large yellow sweet pepper, chopped
1 medium zucchini, chopped
2 14-oz cans beef broth
1 15-oz can cannellini beans, rinsed
8 oz. green beans
1 C dried mostaccioli
1/4 C coarsely chopped fresh basil
2 medium tomatoes, chopped
2 C fresh baby spinach leaves

In a 4-quart Dutch oven, cook garlic and onion in hot oil until tender. Add sweet pepper, zucchini, broth, and 2 cups water. Bring to boiling. Rinse and drain beans. Add beans and pasta; return to boil. Reduce heat. Simmer, covered, 10-12 minutes or until pasta is tender, stirring occasionally. Stir in basil, tomatoes and spinach, heat through. Season with salt and pepper. (Recipe courtesy of Better Home and Gardens, October 2007.)

I’m not saying that any single spice is a cancer cure-all. But I do believe in the philosophy offered in the international bestseller, Anti-Cancer: A New Way of Life, by David Servan-Schreiber, M.D., Ph. D. We need to take a multi-faceted approach to cancer treatment — which includes the most effective chemotherapy paired with the best spices, foods and supplements nature has to offer. Schreiber outlines just how to do that and I’m on it. I’ve already made major changes in my diet in the past two months, and will continue to do so.

“Turmeric (the yellow powder that is one of the components of yellow curry) is the most powerful natural antiinflammatory identified today,” Schreiber writes. “It also helps stimulate apoptosis (cell death) in cancer cells and inhibit angiogenesis (the formation and development of blood vessels that feed tumors). In the laboratory, it enhances the effectiveness of chemotherapy and reduces tumor growth.”

Need I say more?

I cannot and would not point to any one thing that I or my doctors have been doing since my January 2011 Stage 4 breast cancer diagnosis as the “miracle.” But I can say that I’ve been dedicated to using every available tool out there to bring myself closer and closer to remission — be it chemotherapy, trial drugs like the PARP Inhibitor, foods, spices and supplements.

And something — perhaps all of it, together — is working. My most recent scans were the most dramatic, showing shrinkage of some of my tumors by 3 or 4 millimeters — in just six weeks’ time. That’s a major victory. I also feel dramatically different in the last few months. And time and again, people who have not seen me for two or three months remark that my skin is glowing. I look healthy, not pasty like I did following my diagnosis.

I continue to read everything I can get my hands on in relations to cancer fighting foods, spices and supplements. I also listen to every expert out there. That’s what I’ll be doing this weekend, when I will be attending The Pink Fund Annual Luncheon. Keynote Speaker Kris Carr, New York Times best-selling author and Stage 4 cancer survivor, will be talking about how she radically changed her diet to save her own life — and how all of us can follow her lead in living longer, healthier lives, preventing cancer, and fighting it, if that is among the cards we are dealt.

There are still a few tickets left for Saturday’s event. If your debate is over the ticket price, keep in mind what someone once told me: You can either learn how to take good care of yourself right now and buy and prepare better quality — and likely more costly — foods, or you can pay it out in medical bills later.

Hope to see you there!

Copyright 2011, Amy Rauch Neilson





Sputter, Sputter, Back to Life

13 09 2011

Theo and Don giving summer one last hurrah! Photo by Amy Rauch Neilson.


It’s been a rough week or two. I haven’t blogged in a while. And you noticed.

I’m glad.

It’s nice to know that when I don’t blog, there are people out there who notice. Lots of them.

So, what was the hang-up? I’ve thought a lot about it and it really wasn’t any one thing. It was a lot of things.

I was scheduled for chemo last week, but when I got to the infusion center, my white blood counts were still too low from my bout in the hospital, so they had to send me home.

My CT Scan results came in from two weeks ago and they were very good. My condition remains stable to slight improvement. The tumors in my lungs — two on each side that started out the size of blueberries — continue to shrink.

I should be thrilled. I AM thrilled. But I also get scared.

Sometimes, the CT only captures my lungs. This one was more comprehensive, taking a snapshot of my lungs, abdomen and pelvic regions. So, this one showed my liver.

Months ago, a CT report showed spots on my liver. But, because there has never been a baseline of my liver prior to my January diagnosis, no one knows for sure what those spots are. Are they cancer? Could they simply be hemangiomas — harmless clusters of blood vessels that my family is quite prone to?

There’s no way to know without a biopsy. And a biopsy doesn’t make sense. Because, whatever those spots are — cancer or not — my treatment wouldn’t change. A biopsy presents risks. It’s surgery. And there’s always the chance that when the surgeon goes in to take a piece of the suspicious growth, a cell or two could escape in the process — something that’s known as “seeding.” In essence, it’s taking a chance cf spreading cancer as a big downside when the additional information — whatever it is — doesn’t offer an upside.

The CT Scan results showed that the spots on my liver had shrunk considerably since they were first noted in the spring. But no one knows whether that means they are cancer — and the chemotherapy shrunk them — or, that they are something else, and they shrunk for some other, unknown reason.

Regardless, they DID shrink. Everything has. I’m doing really well. That’s the rational interpretation.

The not so rational reaction is the emotions, the fear I feel when I get test results back, wondering about these strange, rogue, uncooperative cells that are in my body. How many and where? And my incessant prayers and continuing journey to annihilate them. When? I wonder. When will this part of my life’s journey be over? When will life return to
“normal.”

So, there was the letdown of not being able to get my “medicine,” followed by the scan results which should have had me leaping for joy, and did, in many ways, while also causing me to question and to fear.

Yet, I feel from the depths of my soul that I am not only moving in the right direction, but that I am going to be on this planet for a long time to come.

My doctors have also been slowly weaning me off one of my three chemo drugs — Gemzar. That is the drug that so ravages my bone marrow and causes my counts to plummet — landing me in the hospital two weekends ago. There are two sides to this news: One, my chemo treatments will be shorter and less toxic. I’m at chemo this very moment with my bff Kristi Lynn Kahl, going through my first “test round” of what it will be like with one less chemo drug entering my body. Will it make a big difference? Will I be a lot less sick as a result? That’s my hope.

It’s also scary. Though I was unable to get chemo from the end of June til mid-August due to low blood counts and hospitalization, and during that time, nothing grew — it actually continued to shrink — there’s always concern when a drug goes away that the cancer could regain its foothold. So, that was on my mind last week.

Thank God I was blessed with a strong spirit that rebounds quickly. This week is a whole new week and I’m feeling quite fine.

Sunday, Don, Theo and I wandered the Toledo Zoo with close friends and had a blast. Monday, I watched dockside (I’m still not allowed in the water) as Don took Theo on a jet ski ride — what a beautiful, big grin on Theo’s face! And today, my counts were in line and I am able to get my chemo treatment.

In short, I’m back. But thank you for noticing my absence. It’s so very uplifting to know there are people out there thinking about you and praying for you, even on the days when it’s hard to offer anything in return.

I may have sputtered, but I am back to life and loving it.

Copyright 2011, Amy Rauch Neilson





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





Dark Clouds, Yes — But Don’t Overlook the Silver Lining

16 08 2011

Photo courtesy of: jittajack.blogspot.com

This is Week 2, Round 8 of chemo. That means I’ve now sat through 30 infusion days — and 120 total infusions — since chemo began Feb. 1, 2011.

Ugh. Yuck. Blech. Ewww. That’s how I feel after today’s chemo. I often have trouble with word retrieval in the hours following my infusions. My Chemo Buds notice this on Tuesdays — my hard chemo days — as the second infusion, Gemzar, makes me go pale and honestly, a little loopy. I sometimes slur my words and feel like a drunk who never had the pleasure of the cocktail — the chemo cocktail, yes, but not the Whiskey Sour that’s my standard order.

It feels like a bout of the flu coming on — headache, body aches, nausea. But I slept for a couple of hours this afternoon after I got home and it recharged me enough that I could eat a few slices of bread and a couple of peaches along with the antioxidant green tea that is super good for me and that I am drinking by the gallon daily. This little hiatis won’t last long — I need to hit the sack shortly. But first, some silver linings to share with you. A few of my favorites:

1. Support of Friends and Family. I keep waiting for chemo to be fun (I’m the eternal optimist), but so far, it’s disappointed me. I CAN say that it is really reassuring and supportive to have the many loving family and friends in my life who show up on time, drive me to chemo, sit there beside me, drive me home and tuck me into bed. Today, my Chemo Buddy was my bff Elaine Schultz. I enjoy the conversations with each of you and treasure you and your friendship. Not only that, studies PROVE that cancer survivors who are surrounded by a loving network of their peeps have much higher rates of long-term survival. Thank you.

2. Positive Test Results. My tumors have remained stable and/or shrunk every time since February that I’ve had a CT Scan. The latest one taken in the hospital mid-July showed the same results. That’s a LOT to be happy about!

If that isn’t enough, the way I FEEL is! The coughing linked to the tumors in my lungs stopped two months after chemo began; three months later, Don noticed that my stamina had dramatically improved, and honestly, I am feeling terrific. People have been noticing — people who haven’t seen me in two or three months. They’re surprised.

“You look really good,” they say.

I shrug it off and say, “Maybe it’s the tan?”

I mean, that seems like a reasonable explanation.

Nope. They’ve already taken that into account and they are sure I look better, healthier than just two or three months ago. Waaahhoooo!!!!!!!!

3. Amazing Blood Counts! This is a biggie. For the first time in many, many months, my blood counts were SO good today that I don’t have to do those awful, painful Neupogen (white blood cell booster shots) this round! They are worse than chemo, as I’ve said many a time. Very painful side effects in my bones (think rib bones that THROB) that last for 24 hours per shot, and the regimen calls for five days of shots. So, hooray for a small victory that is actually quite BIG!

My doctor attributed it partially to my changeover to a more healthy diet. It’s a slow but sure process, but I’ve already whacked most of the refined white sugar from my diet — replacing it with natural Blue Agave (available at most health food stores and quite good) that does not cause blood insulin levels to spike. I’ve got to keep my glycemic index in check. (For more on the glycemic index and cancer fighting foods, etc., see David Schreiber’s book, Anti-Cancer: A New Way of Life. I can’t recommend it highly enough.)

I’m also eating tons of fresh peaches now in season from our local orchard, raw veggies, whole grains, tomatoes and fresh green beans (raw) from my garden, and EEEK! I ate a mushroom yesterday. For those of you who know me, I’ve had a lifelong hate-relationship with mushrooms. They are one of the only foods I cannot stand to eat.

But.

But they are extremely beneficial cancer fighters — lots and lots of great, healthy properties. So, I’m gonna find a way to get them down. Eww. Ick. My close friend and Theo’s godfather Ken Bagnall tried to lessen the pain of my palate yesterday by covering a raw mushroom in spinach dip.

Still yuck. I nearly hurled. I compare it as being on equal footing with the one time I ate a huge, garlic and butter sauted escargot. That was 20 years ago and I swear, I need to bring it up in a counseling session sometime.

4. Back on Track. It is a victory in and of itself that I was finally able to get through a full round — four sessions — of chemo after all these weeks. I’d been off since the end of June due to low blood counts and the infection that hospitalized me. I am so grateful that I am back on my regimen. That really is a silver lining!

5. The End of Chemo is Near. Nope. I’m not holding out on you. I still don’t know when the end of chemo will come. No one but God knows that. But I do know that getting back on schedule means that I’mmmm bacccckkkk and heading in the right direction, AKA The Finish Line.

Let’s get this chemo thing over and done with ASAP so I can return to my regularly-scheduled life, shall we?

Copyright 2011 Amy Rauch Neilson





Status Update: Back to Chemo

9 08 2011

I’m just now back from a day of chemo. Tuesdays are always the long day of the week, with three back-to-back-to-back infusions. My blood counts were well within range, no fever, all vital signs were good. Whew!

I’m so very pleased that I was able to return to my chemo regimen and get back on my schedule of fighting and beating this beast. I’ve been off/unable to have chemo since the end of June. We are back on track!

My bff Jennifer Amprim Wolf just dropped me off at home. She sat beside me all day and I shared a new-found secret with her: there’s a room in the chemo infusion center with heat/massage chairs…today was a “slow” day, so we were able to snag that room — and the chairs! Score!

Jennifer is walking the Susan G. Komen Three-Day for the first time this weekend in my honor as well as for others who have fought or are currently fighting the breast cancer battle. Go Jennifer! She has trained long and hard for this weekend. Please send prayers of sustanance and good fellowship her way. What a trooper!

Someday very soon, I hope to be at a place where I can do the Three-Day alongside her and my many other friends who take on this challenge every year. I will be touching base with Jennifer over the weekend to see if I can pop in and walk beside her for a short distance. Seeing a sea of pink is always uplifting and inspiring, if not downright euphoric!

But until then, it’s off to bed for me so I can recover from today. If I get a few hours in, I may feel well enough to spend some time with Don and Theo this evening. Low-key time. Maybe Theo and I will be able to watch the second half of Scoobie Doo and the Lake Monster, which we began watching last night.

Thursday’s chemo will also knock me down, but not quite as hard. Rest, as difficult as that concept is for me, is what I must do now.

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





Blood, Sweat, and Tears…But Not in That Order

16 04 2011

Image Courtesy of the American Red Cross.

There was blood, sweat, and tears yesterday, but not in that order.

First came the tears.

Friday was Parent/Teacher Conference Day at Theo’s school. I pride myself on being organized and efficient. I claimed our slot the first day the sign-up sheets were posted. Then, I came home and marked it on our family calendar. I’m sure somewhere in my subconcious, this thought lurked: I may be fighting breast cancer, but I can still manage our daily life with the best of ’em!

I thought our conference was at 10:20 a.m. I would have bet money on it. Big money.

So, when we arrived at 10:15, I thought we were right on schedule.

Not.

There was another parent waiting awkwardly in the wings as Theo’s teacher explained that we were late; our 20-minute conference slot had been at 10 a.m.

There was a perfectly reasonable solution to this problem — 11 a.m was wide open and in the meantime, we could meet with Theo’s music teacher. But I broke down sobbing anyway. Right there, in the school lobby.

That should have been my first clue.

I pulled myself together — well, mostly — and we met with Theo’s music teacher and then his classroom teacher. They are both terrific and, despite my earlier breakdown, it went well.

Next, the sweat.

My bff Anita Griglio Kelly chauffered me to yesterday’s chemo infusion. I was feeling pretty weak when we arrived, but I was determined to get my treatment. I had chills, then sweats, then chills again. That mystery was short-lived after the lab results of blood drawn when I arrived at the Infusion Center came back. Although I’d had an infusion of Procrit on Tuesday in an effort to raise my red blood cell counts, they had continued to plummet. I needed two units of blood, asap.

Finally, the blood.

Following my chemo infusion, I went straight to the ER, where the doctors and nurses prepared me for the first blood tranfusions of my life. I’d been on the giving end many a time. It was a bit surreal to be on the receiving end.

My blood was sent to the lab to confirm and reconfirm that my blood type is indeed A+, then “cross-matched” for other markers that would indicate which packets of the donor blood available were the least likely to be rejected by my body.

Finally, two units of the most beautiful crimson liquid I’ve ever seen in my life arrived in Room 8 of the ER. Might as well have been liquid gold. The nurse accessed my port and the tranfusions began.

During the next six hours, as I watched the blood slowly drip from the bag and travel through clear plastic tubing to the port in my chest, I wondered who it was who had been kind, generous, and selfless enough to donate blood for a complete stranger. I would never know.

But if I could, I would tell that person that their gift restored and rejuvenated the Mom of a little five-year-old boy named Theo and the Wife of a loving husband named Don who just yesterday told me that he is treasuring every day we have together on this planet. I’d tell them that I went from a woman so low on “fuel” that she could barely sustain a simple Parent/Teacher conference earlier that day, to one who cooked a breakfast of french toast and bacon with her family the very next morning. Most of all, I’d say two simple words: Thank you.

Several times last evening I looked up at that donor bag of blood and thanked God that there was someone out there who was willing to give it, destination unknown.

So, although I am humbled and grateful for the many people who are stepping forward to donate blood on my behalf, designated specifically for me should I need it in the upcoming months, I also have another request.

Whether or not you are A+, whether or not you can help me specifically, please give blood.

There are lots of “Amys” out there who desperately need it. Go to The Red Cross website and make an appointment. There are convenient donation sites all around, it takes but a few minutes, and it is truly a life-changing gift.

Copyright 2011, Amy Rauch Neilson








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