Smooth Sailing — Well, Pretty Much.

23 11 2011
Me, Don and Theo, testing one of the sky lanterns for the Dec. 3 Sky Lights of Love Benefit. Photo by Kristi Rugh Kahl.

Test runs are important. We learned just how important last Sunday, when Don, Theo and I met at Van Buren Park with Sky Lights of Love Organizer Kristi Kahl and her son, Logan, and friends Jodi and Randy Krueger, to give it a try, figure out the logistics.

I’d never seen a sky lantern up close until my bff Kristi pulled up with a half dozen or so samples. I was surprised by how BIG they are! Even though I’ve seen them in pictures and in videos, I never realized their size. They must easily be three feet tall once they’re fully inflated and ready for lift-off.
The picture of me, above, sending a pink ribbon sky lantern into the skies looks like it went off without a hitch. It did — until it got snagged in a tree. So, though the outlook point at the park, which overlooks gorgeous Belleville Lake, was great in theory, we realized then and there that there are just too many trees. So, we moved to a nearby open field, where, once we got the lanterns lit, they expanded with air and took off. And all of us breathed sighs of relief.
These babies remind me of miniature hot air balloons in both the way they look as well as how they soar into the sky. They ascend higher than I ever imagined. After several minutes, they’re still going up, up, up — until the naked eye can no longer spot them. I love that. They then self-extinguish at some point and fall to the ground. They are biodegradable, so no harm done. Just lots of love and wishes sent into the night sky.
The mechanics are pretty simple, once you get them down. That’s what we worked on with several of these lanterns Sunday — and after a few trial runs and burn marks (on the sides of the lanterns, not us!), we’ve got it. At the Dec. 3 Benefit, I will give everyone a run down of how to do a safe lift-off via the PA system, and we will have people roaming through the crowd to help.
There’s still time to join us. Lanterns can be purchased through Sunday, November 27. We will be sending up a number of the pink ribbon lanterns like the one shown above, but also, some beautiful In Memory Of lanterns that I just this week realized are available. They are white with gold trim and there is a large tag on the top on which we will be writing the name of the person or people indicated by the purchaser. There is a section on the PayPal order form where you can indicate if you’d like to light one off in someone’s memory — or, if you are unable to attend, we will do it for you. The sentiment on the memory lanterns is beautiful: In memory of those who have left us, may this light rise to the heavens to shine with you for all eternity.
To order a lantern, click here, or go to the Events tab on the blog’s homepage and look under Upcoming Events. If you have questions, please feel free to contact Kristi Kahl at If you have already placed an order, and would like to designate a lantern In Memory Of, but haven’t yet done so, please email Kristi. Also, if you are planning to attend the event, please drop Kristi a quick email and let her know. We are looking forward to filling the sky with light, hope and love with all of you on Dec. 3.
Copyright 2011, Amy Rauch Neilson

Life, Unscripted: Beyond Chemo

9 02 2011

Theo puts the finishing touches on his Valentine's Day Card Box for school.

Part of my life, for now and the forseeable future, is scripted. The chemo regimen I’m on is not forgiving. I need to be at the hospital each Monday for blood draws and labs. These results ensure that I’m healthy enough to receive chemo. Once I leap that hurdle with flying colors (as I did this week!), I have two rounds of chemo — one on Tuesday, the other on Friday.

I’m on what’s called a Day1-Day4-Day8-Day11 regimen — with a one week break in between, and then it starts again. I’m on the schedule for a minimum of 24 treatments (12 weeks), before the doctors will consider (after a clean PET Scan) stopping or curtailing the regimen. In contrast, when I was a Stage 1 in 2005, I went through four rounds of chemo, period. Done.

Tuesday’s round is the longest and most brutal. I’m in the chemo chair (think recliner with footstool — it’s pretty comfy). The IV goes into the port on the right side of my chest. First I receive a bag of fluids that contains anti-nausea drugs. Anti-nausea drugs have come a long way in the world of chemo. These babies stay in my system and work for about three days — just long enough to get me over the hump.

Next comes the Gemzar (Gemcitabine) and Carboplatin, followed by the one I refer to as the “Magic Elixir” — The PARP Inhibitor, AKA BSI-201. Together, the three infusions take about 4 hours to travel from the IV drip into my body. While I’m waiting, I can do most anything — eat, talk to my chemo buddy/driver, blog, take part in a conference call, visit with somone who stops by (yesterday, it was a surprise visit from Molly MacDonald at The Pink Fund!)

The way home can get a bit dicey. Royal Oak Beaumont is a good distance from our house. It’s a 45 minute drive without traffic, but nine times out of 10, there is traffic and it takes over an hour (or 2 1/2 hours, as it did a few weeks back when I was with my cousin Christine!) The car ride gives me a touch of motion sickness most times, meaning only that I’ve got an upset stomach and don’t eat much when I get home.

Getting chemo means you often feel like you’re coming down with the flu — the body aches, pains, mild nausea. Very rarely do I ever vomit, thanks to the anti-nausea drugs. For that, I am so grateful. So, while I’m not Amy at Full Speed (this is a sight to see, I’ve been told!), I can — and do — spend time with my family before heading off to a pretty early bedtime.

Wednesdays are my worst days, Thursdays about 50 percent better, Fridays pretty good, though I go back for chemo treatment on Friday. That’s the PARP Inhibitor all by itself, so the infusion is much shorter — maybe an hour to an hour and a half. And the side-effects much less brutal. Saturday I won’t be feeling stellar, but I will be feeling pretty good.

But life goes on, despite breast cancer treatments. That’s the key. You can live a fairly normal life during treatment, albeit a slower version where I have to make careful choices of what I can and can’t schedule on the calendar. I’ve got to protect my energy levels, and make sure that I’m not in a crowd very often. I can’t afford to be around sick people, as getting sick would be reason to cancel or postpone my treatment.

But that’s not bad news. We get a lot of one-on-one family time these days, truly relishing in life’s simplest pleasures. Helping Theo decorate his Valentine’s Day Collection Box for school. Running pell-mell with him throughout the house, decorating the windows with Valentine’s Day vinyl clings. Sliding down the sled hill out back and skidding across the lake — whoomp! — into a snow bank. And then doing it again.

There is life beyond chemo — unscripted — and plenty of it.

This week is Amphibian Week at Theo’s school and he’s been invited to bring his American Toad and dwarf frogs to school tomorrow — “For the whole day, Mommy!” he announced after school on Monday.

Then his teacher called and asked if I might be up to coming to school Friday morning for just a few minutes to talk to his classmates about our frog and toad hobby, caring for and keeping them healthy, learning all there is to know about them. I’ll be there. I’ll also be at his school’s Elementary School Round-up later this week and a family bridal shower on Saturday. In between, I will be doing a lot of resting, eating healthy, refilling my empty tank. I’ll be blogging and working on a smaller scale than usual. Who knows? I might even throw a load or two of laundry into the washer.

I’ll be looking forward to my week off next week like a kid counting the days til summer vacation. That said, it’s important to note that life during cancer treatment isn’t black or white. It falls into the gray area of what you have to do, and what you then choose to do.

It’s not “I went from a happy, full life to nothing.”

It’s, “I went from a happy, full life to a life where I am still very happy, have to incorporate regular treatments for a while, but in between, can still do most everything I love and, most importantly, be with those I love.”

There’s a scripted part of my life during treatment, yes. But there’s also the unscripted. And, thank God, plenty of it.

Copyright 2011, Amy Rauch Neilson

Breast Cancer — Without Breasts?

5 02 2011

This wasn’t supposed to happen to me. Truly.

I know lots of women with breast cancer utter those words, as I also did during my first go-round with Stage 1 in 2006.

Following my 2006 diagnosis, my doctors offered this advice:

“Treat this cancer to the max. It’ll be a year of hell, but it’ll buy you 40 more.”

“I can do a year of hell for 40 more,” I said. “I’m in.”

What did “in” mean? It meant a radical double mastectomy, chemotherapy, an oophorectomy (removal of my ovaries and fallopian tubes).

I did it. I did it all. I did it to the max. I was 4 years, 10 months cancer free when it happened.

On January 9, 2011, I had just come in from ice skating out on the lake with Don and Theo. We were cold, but happy, exhilarated from the rush of the skates gliding on the smooth surface, trails of shaved ice left behind in our wake.

I flopped on the couch, turned on the news, and pulled a polar fleece blanket over me up to my chest. That’s when I felt it.

Even though I was wearing a thick sweatshirt, I felt it.

My forearm brushed over something that felt like a large marble.

“What in the heck is that?” I thought to myself.

I reached down into my sweatshirt and there it was — a lump the size of a large, red, round grape just below my left nipple.

Don was sitting in the easy chair next to me.

“Honey?” I said. “Could you come here? Check this out?”

He did. I saw a shadow cross his face.

“Was this here before?”

“No,” he said. “This was definitely not here before.”

I contacted the oncologist on call at William Beaumont. I knew there wasn’t anything he could tell me over the phone. But it was comforting just to talk to someone, let them know what’s going on, ask them to start putting the ball in motion.

The next day, with my sister Lisa and husband Don by my side, I went to see my oncologist. She felt the lump. Could be a necrosis, she said. Could be something to do with your implant. Or scar tissue. Or early stage breast cancer.

She left the room and conferred with her colleagues and the breast cancer surgeon, Dr. Nayana Dehkne. Dr. Dehkne ordered a biopsy, stat. I went straight from my oncologist’s office to the other wing of the hospital, where I was prepped for a biopsy.

Dr. Dehkne ruled out a problem with my implant and scar tissue via ultrasound. That left two options: necrosis (hard lump caused by trauma to an area) — or a return of my breast cancer.

Two days later, the biopsy results confirmed what I already knew in my gut. Breast cancer.

So, how does this happen? How, many of my friends have asked, can you get breast cancer when you no longer have breasts?

Science is not perfect.

When I had my double mastectomy, the doctors told me that it is impossible to get every single cell of breast tissue that exists in my body. They try. They vacuum it out from around my collar bone area, under my arms, scrape the cells off of my chest wall. But even in the best circumstances, they can only get 98 or 99 percent. There are some left behind.

Science is damned good. But it’s not perfect.

So, in that 1 or 2 percent of the cells that remained, the Monster found a foothold. Between my left breast implant and my left nipple — which isn’t EVEN a nipple, but a reconstructed, very well done look-alike — it found a few leftover cells of healthy breast tissue to invade.

That’s how it happened.

That’s how I went from planning a square dance to celebrate five years cancer free to battling cancer again — and this time, a Stage 4.

What’s my prognosis? No one knows for sure. But, at least when I asked THE question — Are we talking weeks? Months? A year? My oncologist said, “No, we are not talking months. I do not have a crystal ball, but I believe you could live for years.”

That will likely mean I will move in and out of remission, and will require chemo when the Ugly Monster rears his hideous head.

But that I will happily do, given the alternative.

Once again, I’ll do whatever it takes. I’ll do treatment — and to the max.

Just let it work.

Dear God, when they scan my body in a few weeks to gauge the impact the chemo is having on the cancer in my body, may it be receding, not static, or, even worse, spreading.

Please let the chemo dissolve cancer cells like the dots on a Pac Man game.

Let me score high. Let me enter my initials as the new Champ.

I’ll gladly do another year of hell to buy myself 40 more.

— Amy Rauch Neilson

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