Status Update: Big Decisions Coming Our Way

5 12 2011
Theo and me, sending off the lantern in memory of my Mom and Dad, the grandparents he never knew. Photo by Don Neilson.

Well, today’s the day. After two weeks of white blood cell counts and platelets that were far too low for me to be able to receive chemotherapy treatment, Don and my sister Lisa and I are headed to the hospital to have a pow-wow with my oncology team. The core issue is my inability to recover from my chemotherapy infusions. And, as my counts remain low, the continuous postponement of my therapy means, bottom line, that the doctors aren’t able to get any treatment, AKA MEDICINE, into my body. Obviously, that’s not a good answer. But there does look to be a great answer in an alternate chemotherapy choice – Xeloda.

I spoke with one of the Clinical Trials nurses this morning and she told me that yes, the plan today is to take me off of the Carboplatin/PARP Inhibitor trial and move me to an oral chemotherapy drug called Xeloda. There would be so many benefits to this move. I would no longer need to go into the hospital three times a week for bloodwork and infusions, schedule chemo drivers and spend hours of my life either in the infusion center or home, trying to recover. If it works — and we so pray it does — it could not only send me into remission, but keep me there. The worst side-effect seems to be a painful reddening of your hands and feet, with possible blistering. But should that happen to me (and I pray it doesn’t, because it would make me crazy not to be able to type for several days!), a dose reduction should solve the problem.
The nurse told me this morning that conversations over the past week between members of my oncology team are pointing to taking me off of the trial and moving me onto Xeloda. She also told me that she has many, many patients — and yes, they are Stage 4 — who have done very well on this drug for years. There are lots of benefits and few side-effects, and all seem to be manageable.
My schedule would be to take Xeloda pills for two weeks, then off a week, repeat. But instead of having to be at the hospital three days a week, my new schedule would mean I’d only need to check in with my oncologist once every three weeks. Xeloda is not hard on the body’s bone marrow and would not ravage my body  like Gemzar and Carboplatin have. It should mean the end of the painful Neupogen shots, blood tranfusions, and hospitalizations.
Perhaps I will be able to turn my handicapped placard back in to the State of Michigan and have less need for wearing protective masks in public. And I can return to a more “normal” life routine, with treatment of my Stage 4 breast cancer as the chronic disease so many medical professionals are now saying that it is. Something I can manage and live with — with a better quality of life, to boot! Wouldn’t that be awesome!
There are other issues that we’ll need to address today, too. I have been experiencing some pretty serious pain for several weeks now, controlled only by continuous doses of Motrin and at night, Vicodin. My shoulders, back, and tailbone hurt continuously and sometimes it’s difficult for me to walk. Then, last week, a new, very strange symptom popped up — my chin is numb. Still is. I pored over the Neopogen pamphlet I got from the pharmacy and did not see it listed as a side-effect. In the couple of moments when I had a break from sanity, I worried that I was having a stroke, induced by my low platelet counts. I don’t know what we’ll need to do to find the answers to this pain. Perhaps additional tests. Whatever it is that needs to be done, it will be a relief to figure out what the pain is so I can stop worrying about it. I’m sure the worry only exacerberates the problem.
When my bff Kristi Rugh Kahl originally began planning Saturday’s Sky Lights of Love Benefit, her hope for me was that we would be celebrating remission that night.  While that part of her dream hasn’t come true yet, I can’t help but think that heaven not only heard all the hopes, wishes and prayers Saturday night, but also saw the golden lights that they were riding on. When remission comes, we will hold another Sky Lights of Love Event — not as a benefit, but as a celebration.
I’ll keep you posted on what happens today. In the meantime, prayers are always, always welcome.
Click on these links to view the three YouTube videos from Saturday night’s benefit that we have uploaded so far (more to come!):
My speech:  http://youtu.be/SlvobyaDrgs
Lantern Send-off:  http://youtu.be/RUBOFVX4t3Q
My birthday lantern: http://youtu.be/rQ1J8EER7j0
Also, please see my facebook fan page for photos — with more of those on the way, too! Click on: http://www.facebook.com/ItsInTheGenes.org
Copyright 2011, Amy Rauch Neilson
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Oh, What a Night!

4 12 2011


That’s me in the picture, sending off the final Sky Lantern last night — the only solid, bright pink one, ordered especially for me by my bff Kristi Rugh Kahl. I released it heavenward, carrying my Birthday Wish. I’d reveal what that was, but you know what superstition says about that…

Oh, what a night
Late December back in ’63
What a very special time for me
‘Cause I remember what a night.
(Franki Valli)

So it was early December in the year 2011, but still, Oh, What a Night! And yes, it was a very special time for me. One that I’ll never forget.

About 200 friends and family members gathered at Van Buren Park. Some drove in from as far as Grand Rapids just for this event (you know who you are, Mike and Therese O’Connor!), and some hailed from New Zealand. Blog reader and new-found friend Deb Biggs, who I met online via my blog when she was living in New Zealand, returned recently to her home state of Michigan. After months of chatting online, we finally got to meet in person last night!

We were so blessed by the weather. 52 degrees on December 3 is not the norm for Michigan by any stretch of the imagination. Not only that, the evening kept its promise of staying rain-free.

A quick check-in and a few words by me and we were off and lighting! As this was our first time setting off such a large number of lanterns in such a big crowd, we had expected the process to be a little bit, er, a, slower. We had 150 lanterns to send skyward. Don tried to organize the crowd into concentric circles so that we could let the lanterns off in some sort of organized way, but that quickly fell by the wayside.

Maybe I have a lot of pyromaniacs for friends, or maybe they’re just really enthusiastic (I prefer to think the latter), but once the first lantern went up, suddenly, there were both small and large groups of people spread out across the field, lighting off one lantern after another after another. Up they went, and it was a beautiful and amazing sight as the lanterns filled the sky with streaks of golden light. The winds pulled them off into a north-easternly direction and we watched the lights ascend and travel farther and farther until we couldn’t see them anymore.

That’s when we started getting the reports. Cell phones went off in the crowd. The sky lanterns had been spotted over Willow Run Airport, floating over the annual downtown Belleville Christmas parade (perhaps the spectators there thought it was all part of the grand plan) — and eventually, miles away, hovering over I-94 and I-275, still blazing brightly. People drove into the park, just to see what was going on. They pulled over to the side of the road along the I-94 Service Drive to watch as the magical lights floated overhead, beaming and twinkling heavenward, ever so brightly. (Rumor has it that my hot pink birthday lantern did not follow the others, but blazed its own trail up there in the sky. Hmm…)

Just a few minutes past six o’clock, our mission was complete. We had lift-off! 120 lanterns bearing the pink ribbon breast cancer symbol and 30 memory lanterns, inscripted with the names of those who were being remembered or honored last night, along with one special, hot pink lantern just for me that I released as I simultaneously made my birthday wish for the upcoming year. And, in various places around the country and the globe, friends and family had synchronized their clocks to our time zone and joined us in the lantern release.

Countless people told me afterwards that it was one of the most beautiful sights they’ve ever experienced. Don Theo and I are right there with them on that. My niece Danielle Neilson videotaped the various lantern lift-offs throughout the crowd, and she’s posted her video to YouTube. Watching the lanterns make their way skyward as well as listening to the candid chatter in the background offers a really good feel for what the evening was like. We wanted to make every effort to post video of the event for all of the people across the country and around the world who purchased lanterns or donated to the event, but were unable to participate. Wish granted. Kudos, Danielle!

A great big shout out and very special thank you to my bff Kristi Rugh Kahl and her husband, Brian, and son, Logan, for all of their hard work and preparation in the past several weeks. (They were running around like maniacs the night before the event, making sure every last detail had been accounted for.) Thank you also to my mother-in-law, Margaret Neilson, for creating the custom CD of songs I hand-picked for the event, and to Anita Griglio Kelly for making sure the band shell and stage were properly lit and the PA system and microphone would do their job. And they did. The event went off without a hitch! (We had a couple of fire extinguishers waiting in the wings, but thank God, there was no need!)

One last shout out to the people at www.theskylantern.com, who made sure we had the lanterns we needed by the date we needed them by — and even gave us some wiggle room so we could extend the purchase deadline by a week. These sky lanterns are so amazing and there are so many cool designs that I’m planning to order a few of my own, just to have on hand at home, for those moments when I want to walk out into the back yard and send one off with whispered wishes and prayers, hope and love, up, up, and away, to greet the moon and stars.

Copyright 2011, Amy Rauch Neilson





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 kristikahl@comcast.net. 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




Guest Post: The Story Behind the Story

8 11 2011
By Kristi Rugh Kahl
A few weeks ago, Amy’s husband, Don, was driving home from work in his pick-up truck when he first heard “I’m Gonna Love You Through It,” by Martina McBride, on the radio. He was so deeply moved by the song that he had to veer over to the side of the road afterwards and pull himself back together.
The next day, he forwarded the music video to Amy with a simple message: You need to watch this, babe. Amy did, and her reaction mirrored Don’s. Tears flowed and she found great strength in the knowledge that, like Don, so many people everywhere stood strong in this fight together with their loved ones, right by their side, every day, every moment, every surgery and treatment.
“I can’t imagine what it would feel like to have so many people gather around you to release lanterns of pure white light heavenward,” Amy said. I decided it was time for Amy to experience it for herself. This is the inspiration behind our upcoming benefit, Sky Lights of Love, December 3, 2011, at the Van Buren Township Lookout Point, Van Buren, Michigan. No matter where you live:

You can Participate!

  • Purchase a Lantern, and join us as we gather together to release hundreds of lanterns of light over Belleville Lake in Amy’s honor ! Lanterns will be distributed when you check-in at the event.  Lanterns are available by pre-sale onlyPurchase Lanterns by November 20, 2011.  No Lanterns will be sold at the door.
  • Can’t be there? You can still purchase a lantern, and we will release it on your behalf.
  • You can make a donation to the event here!
We have already been pleasantly surprised by the number of lanterns sold today and donations made for the Benefit — just hours after we announced it yesterday. Thank you! We are off to a good start. We look forward to seeing as many of you there on Dec. 3 as possible!
Don’t forget to check out the Martina McBride video. Not only is the song gorgeous, but it will give you a good visual of just how amazing and beautiful these lanterns are as they soar through the night sky.
Copyright 2011, Kristi Rugh Kahl




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! 







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