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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