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:
Lantern Send-off:
My birthday lantern:
Also, please see my facebook fan page for photos — with more of those on the way, too! Click on:
Copyright 2011, Amy Rauch Neilson



16 responses

5 12 2011
Kristi Rugh Kahl

Prayers for a great meeting today with your doctors! Glad to hear Don and Lisa will be with you as will thousands of us in spirit! I pray the oral drug will be the “magic” pill for you as I know it will take away a lot of stress and fatigue not having to schedule drivers and go to the hospital several times a week. Week after week……it’s exhausting just hearing about it, let alone actually doing it. And YES we will have a lantern celebration as soon as we get the great news that you are in remission! It will be my pleasure to help with that!!!!!!! xoxo

5 12 2011
Kristi Rugh Kahl

PS: LOVE the picture of you and Theo! How adorable 🙂 And what a great way to honor his grandparents.

5 12 2011

It all sounds so promising! Sorry to have missed Saturday night, but I was following everything online. Keep us posted; prayers are always with you. (((HUGS))) CP

5 12 2011
Mary Goedert

Amy……I can sense the hope and happiness in your post. All your BI friends (Street Smarts/Saginaw) are PULLING FOR YOU!!!! Much love, Mary

5 12 2011

Bonne chance for the meeting!
Thinking of you!
XOXO Alice

5 12 2011

So hoping the meeting today with the docs is a good one……hoping the new treatment will be the answer to our prayers

5 12 2011

The event sounds and looks amazing!
Sorry about your white blood cells, but the new plan sounds excellent! Hoping those pains can be fixed. Xxooxxoo

5 12 2011
kerri daugherty

Amy u are always in our prayers. Saturday nite was as beautiful an amazing as u are. God bless u an know ur always in prayer an thoughts. Best of luck today! Love ya

5 12 2011
Carol Clemens

Amy-I am so grateful to you and your friends for sending up my memory balloons. I don’t write much, but have you in my prayers as often as I glance at my bracelet. Am holding you close today a I pray that your team finds just the right drug to put you in remission and lessen the strain on you and your family. You are loved!


5 12 2011
Marie Petrides

Sending you happy and healing thoughts. I am sure that your chin will be fine soon, because lets face it you have a mighty tough chin for putting up with all you have over the last 11 months….stay strong sweetie!

5 12 2011
Cheryl Buck

Sending all my prayers and positive energy your way. So sorry we could not make it Saturday, we were thinking of you. After the crazy holidays are over, it is time for a visit. Unless Julie is in town for the holdiays, then maybe the Rauch sisters and Mato sisters can get together. Love you.

5 12 2011

Praying that this new treatment will be the magic one that God has in store for you.

5 12 2011
Cathy Carey

Hoping that the new plan is a winner and your pain problems are easily solved.

5 12 2011
Linda Stanislawski

Keeping the prayers coming. Health and long life to you .

5 12 2011
Mary Dougherty

Cousin Amy, our love and prayers are always with you. Bill and I truly beleive that you are going to be in remission any day now. You have so much to do and so much to give. Love to you. Bill and Mary

5 12 2011

I am very hopeful that the new treatment will bring many blessings…better health and better living. I still remember how my mom’s chronic cancer experience changed dramatically for the better when she began taking self-administered shots of the then trial drug Interferon at home – it worked well, had much lower side-effects, and gave her alot of freedom – it gave her back time, privacy, rest, and peace of mind – she was able to enjoy full emersion in the family, etc.
I didn’t realize that you have been suffering from the back/neck pain. I’m sad about that. I hope that this is quickly remedied once you start your new treatment. You truly looked beautiful, radiant and healthy at the lantern event…maybe the new nutrition is helping too.
I was watching a PBS special last night with a Dr. Joel Fuhrman on it. He mentioned that eating mushrooms is an important factor in reducing incidences of breast cancer. His micronutrient directed nutritional plan centered around greens, onions, mushrooms, berries, nuts, etc. Power foods. (I know you would rather eat worms than mushrooms..but maybe there are some ways to incorporate them into foods that you wouldn’t mind.) XOXOX Looking forward to Friday.

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