Status Update: Big Decisions Coming Our Way

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

Begging for Chemo?

Theo insisted we "picnic" on my bedroom floor before I left for the hospital yesterday.

Mondays are blood draw days. The docs need to check my counts to make sure my body can tolerate the chemotherapy treatment. I offer up my arm, they take the sample, and within a few minutes, they’ve got their answer.

Yesterday, everything looked good. Except.

Except one of my blood counts, which was at 1.2. It needs to be at least 1.5, or I can’t have the Carboplatin & Gemzar component of my chemotherapy today.

You’d think I’d be happy to be able to duck out of it. After all, I got a taste of the good life last week — my week off chemo — and, hey, I could get used to that. Real quick. Not to mention my worst side-effects come from the C&G. The PARP is mild in comparison.

The C & G drugs are part of my Tuesday trio — Carboplatin, Gemzar, and the PARP Inhibitor. Whatever my counts, I can still get the PARP.

But I’m a glutton. I want all three.

I was sitting on the edge of my seat — OK, make that the edge of the examining table — when Cynthia Kresge, the Physician’s Assistant from my team, came in with the run down.

“One-point-two is too low,” she said as she skimmed the stats, zeroing in on the single outlier.

My heart began racing, my mind churning with possibilities of how I could get around that number and get my full dose.

“Is there anything I can do?” I asked.

“Well, yes,” she said. “We’ve found that exercise — like a brisk 15 minute walk — can boost this count enough to get it to where it needs to be.”

“I’m so there,” I said, already visualizing myself doing laps around the hospital corridors before offering up my arm once again Tuesday morning.

Then, I realized how strange it sounded, this begging for a chemo treatment thing that I was doing.

“Bet you don’t get that much,” I said.

“Actually, we get it all the time,” Cynthia said. “People want their treatments.”

So do I.

Send up some prayers to heaven today that my count is up and over the top by the time I get to the hospital.

I’ll get back to you later on that.

Copyright 2011, Amy Rauch Neilson

The Good News, the Bad News…but always, Hope

I am really scared. Yesterday’s doctor’s appt. did indeed bring the fabulous news that my tumor is triple-negative. It also brought the shocking news that my cancer is at a Stage 3 or Stage 4. I had not heard these “staging numbers” before yesterday and early on in this journey that is only 16 days old but feels like 16 years, the hope was that we were looking at an early stage breast cancer, Stage 1 or Stage 2.

The MRI results yesterday told a different story, with a sizeable tumor and lymph node involvement in my left breast as well as a possible spot on my clavicle and right lung. I leave for the lung biopsy in a little over an hour. Results should be in by Friday. Please pray that the results are negative, that it’s a scar from a previous bronchitis. That result would scale me back to a Stage 3, with a much more favorable, long-term manageable hope.

All of that said, in breast cancer, Stage 3 or Stage 4 is not necessarily a death sentence. I have not been given weeks or months to live. Though no one has a crystal ball, I could conceivably live for many years through the amazing new treatments — like Iniparib — that are becoming available almost daily. For that, I thank God in heaven above and all of the amazing, dedicated scientists whose work is saving more and more lives every day.

I had a few hours of terror and trembling and crying. But through it all, with the help of my breast care surgeon, clinical trials staff and my AMAZING oncologist Dr. Dana Zakalik, I have learned that despite the “staging numbers” that sent me into a downward spiral with an expectation that the Grim Reaper was waiting outside the Examining Room door, I actually have a very good chance of long-term survival. I am a candidate for the PARP Inhibitor (Iniparib), which will be used in combination with two chemotherapy drugs: Gemcitabine and Carboplatin. Because Iniparib is still in the clinical trial phase, my name will be submitted into a national pool today. Names are drawn weekly, but at Royal Oak Beaumont, the 12 women who have needed this drug have all been able to get it through the pool, and the expectation is that it will also be available to me very soon.

I will sign the consent forms to partipate in this clinical trial before I go in for my lung biopsy this morning. That means that I will get in under the deadline for this week’s drawing and will hear back either Weds. or Thurs. as to whether or not my name has been drawn. If it has, I start the Iniparib next Tuesday. If not, I’ll be in the drawing each week until my name is selected. In the meantime, I will begin chemotherapy with the G & C drugs on Friday, and will also have a chemo port inserted Friday morning. I never thought I could say this about chemotherapy, but I cannot wait to get started.

Dr. Zakalik has explained to me that breast cancer is becoming less of a killer and more of a lifetime, manageable disease. I hope and pray I fall into the latter category. I truly have found peace in this overnight. I feel a peace that I am going to be OK, that I am going to survive this. Not a false hope, but a warm, emcompassing white light that comes from somewhere outside of me and shines into the depths of my soul.

Please pray for the negative result on the lung biopsy and that my name is chosen in this week’s Iniparib drawing.

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