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
Advertisements




Meet the REAL DEAL. Kyle Peterson, Age 5, is a True Hero.

26 09 2011

A true hero: Five year old Kyle Peterson with his parents, David and Kim. Photo courtesy of Fox News.I don’t cry through a lot of news stories. And that’s not because I’m insensitive. It’s just the opposite, in fact. I’m so sensitive that if I started crying, I’d never stop. That’s why so many times, I try to hold it together.

But I couldn’t do that for this story. Nor did I expect to.

Five-year-old Kyle Peterson is a hero in every way. Not only is Kyle in remission from AML, an aggressive form of leukemia, but his DNA is now being used for research around the world. All of that, and he is an amazing kid who smiles, laughs and plays constantly.

How do I know? He’s the son of my bff Kim Boggs Peterson. Kim and I have been friends since high school, when our antics — whether at band camp or the local movie theatre — sometimes got us into trouble. We walk a straighter line now, choosing to take our kids to the pool or the Ypsilanti Firehouse Museum over teenage trouble-making.

We’ve always had a lot of fun together. But now there’s a whole different level to our friendship. We connect not just as long-time friends whose kids splash each other in the pool and run through the house shooting Nerf guns, but as people who know what it’s like to face life-threatening diseases — and to rally for their cures. Kim and her family — husband David, sons Karl and Kyle — are some of the bravest, most inspiring people you’ll ever meet.

Grab a box of Kleenex, then check out the piece Fox 2 News aired on the Peterson Family just last weekend: http://www.myfoxdetroit.com/dpp/health/young-hero-from-plymouth-beats-leukemia-20110223-ms?CMP=201109_emailshare

Then, consider joining us at the Light the Night Walk in Ann Arbor on October 8, where Kyle will be one of the honored heroes. Don, Theo and I will be there. Theo will have the honor of carrying a lighted balloon in honor of his friend Kyle.

You can sign up to walk on Kyle’s team at http://www.lightthenight.org/register. Look for Kim Peterson’s team, Kyles Korner, or register to walk as an individual.

It’s amazing, truly, to stop and think about what Kyle has already achieved in his young life. At the age of five, he’s beaten a fierce opponent and contributed to the world in a way that is beyond measure by allowing scientists to study his DNA in order to help find a cure.

All of that, and he’s got a whole lifetime ahead of him. Amen to that.

Photo courtesy of Fox News.

Copyright 2011, Amy Rauch Neilson








%d bloggers like this: