Status Update: On the Operating Room Table

13 10 2011

The scene is a vivid one, as I’ve been there many times before and I know what those final moments are like, when the surgeon comes to your side, places his or her hand on your arm, asks you if you are ready to go.

You nod and try to smile from beneath the blue hair net, already groggy from the IV drugs that are the first phase of the anesthesia. They roll you into the operating room, you look up long enough to see the bright cluster of lights overhead, and then everything goes black.

My niece Natalie’s surgery began at 7 a.m. this morning. The surgeon will first perform a Sentinel Node biopsy on both sides just as an extreme precaution. I am thrilled that Natalie has a surgeon with that kind of wisdom. The results will answer the question as to whether or not any breast cancer cells had begun to develop prior to her surgery and if so, if they had had a chance to spread. Chances are very slim, so we are not worried. We are just happy that her doctors are taking the extra step.

Next, her surgeon will perform the double mastectomy and then the plastic surgeon will step in immediately to begin the first steps of Natalie’s reconstruction — placement of her temporary implants, which will slowly be inflated with fluids in the coming months. She will likely be released from the hospital tomorrow or Saturday.

Please keep her in your prayers today and in the upcoming days and weeks. The surgery is both physically a nightmare (my sister Julie says she remembers every detail and she had hers back in the late 1980s) and mentally a challenge as well.

I must add, however, that all of the anxiety that I was feeling dissipated after conversations with both my sister Julie, and my niece (Julie’s daughter) Natalie. Both were so at peace with the decision that after talking with them, I was able to calm myself and work through the pain of seeing Natalie go through this.

There are, and have been, some interesting signs along the way. Back in 2006, my double-mastecomy was scheduled for Good Friday — the same day we lost my Mom to cancer in 1992. It was such an odd day for the surgeons to schedule surgery, and it was just odd that that was the date that came up on their calendars, that they offered to me. I found comfort in that, that somehow, it was a sign from my parents in heaven above that they were watching over me and that all would be fine.

More irony in today’s date. Today would have been my Dad’s 76th birthday. How strange that the surgeons looked at their calendars, coordinated their schedules, and today is the date that came up. When I mentioned this to my bff Kristi Rugh Kahl, she said there was no other explanation than that my parents were once again sending a sign that they are right beside us as my sisters and niece and our families go through this together, and do what must be done. There’s not a doubt in my mind that she’s right.

Meanwhile, I will also be at the hospital today, receiving the second of four treatments in Round 10 of my chemotherapy. I guess our family is keeping the hospital staff quite busy today.

Please continue to pray for Natalie, that the surgery goes off without a hitch, and that her healing does, too. She will be sent home with drainage tubes, as was I, which will remain in place for a couple of weeks. I couldn’t wait to get those things out.

The recovery is pretty grueling as well. I remember my sister Julie taking me to the park on a fresh, sunny spring day — out for my first walk since surgery. I envisioned myself, well, walking. Not a 5K or anything, but hey, a quarter mile would have been terrific. I couldn’t do more than shuffle about 10 steps — and that was about 10 days after my surgery. I remember being just oh so shocked at how reluctant my body was, how desperately it wanted to hang on to all it had so that every ounce could go toward my healing.

But Natalie is amazing, and the fourth woman in our family to undergo this procedure. I know she will come through with flying colors. And what I wish for her, what we all wish and pray for her, is a long, happy, cancer-free life. After today, she is well on her way to just that.

Copyright 2011, Amy Rauch Neilson


Cautiously Victorious

12 10 2011
This morning’s breakfast — green go-go juice! Yummy! Photo by Amy Rauch Neilson.

The first thing that came to mind after I saw the fruits — and veggies — of my labor begin to drizzle into the bottom cup of my juicer was the color. Green. Grass green. First leaves of spring green.

Oh who cares what color green? The fact that it was green was plenty for starters.

And then, Dr. Suess’s beloved Green Eggs and Ham. Would I, could I drink this on a train? Or throw it down my kitchen drain?
Neither. In the end, I, like Dr. Suess’s character, tried it — and though my palate wasn’t quite as thrilled as his, I’m OK with it. I’ve become a daily juicer and, after a few adjustments, it’s getting a bit tastier (first batch mishap — Theo threw in three inches of raw ginger root when I wasn’t looking. I about burned my lips off on the first sip of that concoction!)
But most importantly, I believe it works. It is working. Just yesterday, my oncologist performed a manual exam of my left breast, and guess what she found? NOTHING! She could not feel the tumor, no matter how hard she pressed or from what angle! That is amazing progress! I feel cautiously hopeful — no, make that cautiously victorious, that remission may be within sight, the light at end of the tunnel not too far away.
It does not mean that my breast tumor is completely gone, but that is the most hopeful sign of that that we’ve noted since my Jan. 12, 2011 diagnosis. Back on Jan. 10, when I discovered the tumor, it was so large I felt it through my sweatshirt when my forearm grazed my left breast. I felt it through thick sweatshirt material. That’s quite a difference from what the manual exam concluded yesterday.
And there is still the matter of ridding my body of the small tumors in my lungs and possibly my liver (my lung tumors were biopsied; my liver was not). But little by little, I will whittle away at them with the chemo, green go-go juice, vitamins, and whatever else I come across through my own studies and the direction and advice of Dr. Waldo, the specialist I’m seeing in Indianapolis, that will cause my body to reject the breast cancer cells for their rightful healthy counterparts.
I believe that our best chance of success when we’re faced with such a devious and calculating foe is to attack it from all angles: Chemotherapy, diet, supplements. I’ve changed my diet tremendously since mid-July, when I first saw Dr. Ralph Waldo, an MD, biochemist and Ph.D. in Indianapolis who specializes in individualizing your treatment based on what he discovers about your body at the blood cellular and DNA level. I go for my recheck next week and I’m very excited.
Though I missed many sessions of chemo over the summer due to low blood counts and hospitalization, my very best scan so far came back Aug. 30 — six weeks after I started following Dr. Waldo’s basic food and supplement directions.
Juicing is the next step, something that’s come highly recommended to me by cancer survivors everywhere. And I’ve continued to read and read and read and study all the information that’s out there. One of the most fascinating facts I’ve come across from several different resources lately is this:
One fundamental quality of green juice recipes is chlorophyll, which is the product of plants turning light into energy for
insects and animals to eat. Without this, life as we know it, would not exist. Some of the many amazing benefits of chlorophyll include; powerful detoxifying properties including that of the liver, as well as removing unfriendly bacteria,
parasites and mold. Chlorophyll can also improve our blood quality due to its molecular make up, similar to hemoglobin.
It helps increase red blood cell count and increases the movement of oxygen throughout our blood. It also helps the repair and growth of all tissues in the body. (Source:
How fascinating is that? I’m hoping that I will be able to naturally keep my red blood cells at a healthy, normal level, perhaps avoiding the need for future blood transfusions — or at least, delaying my need for them.
And, of course, I believe God and all of your continued prayers have played a huge role in my slow and steady progress. Thank you for that. I will win the race.
Please keep it up and, while you are on your knees, please also include prayers for my niece Natalie, who will undergo a preventive double mastectomy tomorrow at the age of 27. What a courageous, beautiful young lady she is. I am so very proud of her and the very tough decision she’s made. She is at peace with it and I marvel at her rock-solid faith and confidence to just go in there and get ‘er done. I come from a family of very brave women of whom I am in awe of and so very proud.
I pray that makes the difference — that she will never have to face the road I’m currently on. That’s the goal. And in the meantime, I’m headed back to the kitchen for some more of that green go-go juice. I’ll find a recipe that I love yet!
Copyright 2011, Amy Rauch Neilson

Kyle’s Corner Lights the Way With $10,000 + in Donations!

10 10 2011

Top row: Me with Kim Boggs Peterson (Kyle's Mom). Bottom row left to right: Theo with Kyle and two of Kyle's other supporters for Light The Night. Photo by Donald Neilson.The numbers are in! Congratulations to Kyle’s Corner — Kyle Peterson’s family and friends raised more than $10,500 for this year’s walk — coming in as the top family/friend team!

The total raised for the Ann Arbor, Mich. walk last Saturday night was a whopping $104,000!

Those funds will be used to continue the effort to find cures for blood cancers. For more about the walk and The Leukemia & Lymphoma Society, go to:

Congrats to Kyle’s Corner and everyone who participated! Whatta night! What an inspiring night!

For more on Kyle’s story, see my September 26, 2011 blog post.

Photo: That’s me, left, next to Kyle’s Mom, my long-time friend Kim Boggs Peterson; bottom row, left to right: Theo, Kyle and two of Kyle’s other biggest fans. Photo by Don Neilson.

Copyright 2011, Amy Rauch Neilson

Could There Be Pioneers in the Year 2011?

10 10 2011
Blog reader Nancy Allison, left, and me, at the Light the Night Walk for The Leukemia & Lymphoma Society in Ann Arbor, Oct. 8.
Photo by Don Neilson.

I was walking through a crowd of a few hundred people late Saturday afternoon with Don and Theo when I heard someone calling my name.

“Amy? Are you Amy from the Its In the Genes blog?”
I stopped and turned around and met Nancy Allison, a blog reader who actually recognized me out and about in downtown Ann Arbor, getting ready for The Leukemia & Lymphoma Society’s Light the Night walk. She’s a regular reader of my blog and actually recognized me from the blog photos.
“I thought it was you,” she said. “Then I saw Theo and Don and I knew it was you!”
It was great to meet Nancy. And I was quite surprised that someone could actually recognize me from the blog pics.
But it was exciting. It was exciting to meet someone who regularly reads my blog, and who believes it makes a difference.
That’s what it’s all about.
Back when I was in the hospital for a week in July, my bff Anita Griglio Kelly came to visit one afternoon. She sat on the edge of the bed as I was having a particularly hard moment and comforted me with a big hug, despite the gown, mask and gloves she had to wear because I was in isolation.
“I just want to make a difference,” I told her through sobs.
“You already are,” she said. “You have touched more lives through your blog than you will ever know.”
I hadn’t thought of it that way. I don’t know what I expected “a difference” to look like, or how it would arrive. From that day forward, I began thinking of making a difference as part of an ongoing journey, rather than a destination.
The word “journey” came to mind again yesterday, as I was reading through the Beaumont Hospital breast cancer newsletter. In the Ask the Expert section, Dr. Marissa Weiss, president of, had this to say:
“New therapies for breast cancer are usually first introduced in clinical trials for women with metastatic disease, so women with metastatic disease truly are pioneers for new treatments and approaches in the future.”
I’d never thought of myself that way — as a pioneer in the year 2011. Until I read that article, the word “pioneer” in my mind had always been reserved for those people who had battled the elements and traveled cross country in covered wagons in the hopes of a better life. The brave ones who had gone ahead of us, into the unknown.
Though the covered wagon days are over, perhaps there are still pioneers in the year 2011 — pioneers in all of the women like me who are undergoing chemotherapy with drugs that haven’t yet gained the approval of the FDA. We’re willing to be among the first to blaze the trail for drugs like BSI-201 (the PARP inhibitor) in the hopes that they will not only prove effective in treating cancer in our own personal battles, but that they will light the way to better cancer treatments in the future.
Speaking of lighting the way, Don, Theo and I walked a mile through the streets of downtown Ann Arbor Saturday evening along with hundreds of other people who walked to raise money and awareness for blood cancers, like the lymphoma our friend Frank battled successfully 9 years ago and the childhood leukemia that my friend Kim’s five-year-old son, Kyle, battled at the age of three. Kyle, who is in remission, was one of the honored heroes that night. He, too, is a pioneer, as his DNA is being tested by scientists near and far in an effort to discover better treatments and even a cure. And all around him were supporters of the cause — including my husband, Don, who signed up to become a registered bone marrow donor.
That night, I learned that often it is the progress made in treating and curing blood cancers that leads to better treatments and cures for all other types of cancers. Childhood leukemia, which in 1960 had only a 5 percent cure rate, now has a 98 percent cure rate. Stage 4 breast cancer, a diagnosis that not so long ago was a death sentence, is becoming a long-term, treatable disease.
In that same Beaumont newsletter, I came across these words of hope from Dr. Larry Norton, the Medical Director at the Evelyn H. Lauder Breast Center, Memorial Sloan-Kettering Cancer Center — one of the top cancer hospitals in the world. “One of the major changes in metastatic breast cancer over the years is the conversion from an acute fatal disease to a chronic one that people can live with,” he said. “I have people with metastatic breast cancer that I’ve cared for for 25 years. I expect that we are going to see more and more people with long survival with this disease, which is always a prelude towards disease cure. I suspect we’re in that transition now.”
As we carried red (signifying supporters), white (survivors), and gold (loved ones we’ve lost to the disease) balloons that glowed in the night via small batteries hidden inside the latex, we walked with the hope that each step was bringing us closer to what will one day be a cancer-free world.
Pioneers in the year 2011. What an empowering thought.
Copyright 2011, Amy Rauch Neilson

And Cotton-Batting Filled Monopoly Players?

7 10 2011
Monopoly for Four? Photo by Amy Rauch Neilson.

At first I said no.

Theo wanted to play Monopoly Junior this morning with me and I was all in for that. But then he wanted to see what the game would be like with four players, and tried to convince me that Bunny and Fishy should play the other two positions.
That sounded laborious at best.
“No,” I told him. “That would just be sooo complicated, honey.”
But he persisted, setting up the animals, choosing their pawns, doling out their starter money.
Sigh. Really, who was I to discourage such imagination?
“Well, I suppose we could give this a try,” I said.
We did. And though it was a little chaotic, it was also a lot of fun.
Theo belly-laughed when Fishy, Bunny or I landed on his property. Now he had three players to compete against, three players to collect “rent” from.
What a hoot. Or should I say, a hop. Or a dip in the pond.
We are making memories I hope he never forgets. I know I won’t.
Copyright 2011, Amy Rauch Neilson

A Paleontologist in My Kitchen!

7 10 2011
Theo, unearthing T-Rex bones in our kitchen. Photo by Amy Rauch Neilson.

I woke up this morning and found a paleontologist hard at work in my kitchen!

He didn’t look like the picture of a paleontologist I had in my mind’s eye. But he certainly seemed to know what he was doing.

There was a pile of debris on one end of my kitchen island, and a pile of bones at the other. I quickly forgot that this young dinosaur scientist was clad in Elvis Rock ‘n Roll pajamas when he began to explain to me how the T-Rex once ruled the earth, and that likely a meteor strike was the beginning of the end for the dinosaurs.

Theo is home from school today, part of a two-day mini-break that began with a fabulous field trip with his class to Wiard’s Orchards in Ypsilanti, Mich. yesterday. The weather has been phenomenal all week and we are drinking it in, every moment. We are living the gift — the present.

In a week filled with Happy Squares, our next move will be lunch with Daddy, who is taking a half-day off work, then on to see our niece Emily march in the Brighton High School Homecoming Parade, followed by the football game and the band’s halftime performance. We can’t wait!

By the way, though Theo is intrigued by the life of a paleontologist, he stated quite clearly this morning that he is better suited to a life as a herpetologist.

Copyright 2011, Amy Rauch Neilson

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

%d bloggers like this: