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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Guest Post: Tonight’s the Night! One Last Request…

3 12 2011

By Krist Rugh Kahl

Tonight’s THE night! Thank you all so very much for your stellar support of my bff Amy Rauch Neilson! People from all over the country and the world purchased sky lanterns for tonight’s event! We are truly humbled and Amy is in awe.

We are so excited for the Sky Lights of Love Benefit tonight at Van Buren Township Park!  Check-in is at 4:30 p.m. and lantern release is at 6:00 p.m. sharp! We are also blessed with unseasonably warm weather for this time of year in Michigan. Today’s forecast calls for mostly sunny skies and near 50 degrees! We have enjoyed some beautiful winter sunsets in recent days and we’re looking forward to another one tonight, in the minutes before lift-off!

You have all been incredibly generous, supportive and giving. But please help us by doing one more thing…

We are expecting a few hundred people to attend tonight. While we all know that Amy, with her warm and loving nature, would LOVE more than anything to hug each and every one of you tonight, her immune system is so low right now that this would be very dangerous for her. PLEASE do NOT hug or kiss Amy.  Instead, let’s all greet her with a fist pump to show our support and love for her.  She has not been able to have chemo treatments for a few weeks now due to her low blood counts, so we need to help her to get stronger so she can regain her ability to fight off any illness — especially now that we’re in the middle of cold and flu season.

We are looking forward to seeing all of you who can make it tonight as we release 120 pink ribbon lanterns and 30 memory lanterns. 150 points of light, fanning out over Belleville Lake and the surrounding communities. What an amazing sight the sky will be and so uplifting for Amy, for all of us, at this time of year.

Watch for future blogs as well as Amy’s Facebook fan page for photos and videos of tonight’s amazing event! (And while you are on her fan page, don’t forget to hit the “like”button if you haven’t already done so!)

Copyright 2011, Kristi Rugh Kahl





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







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