Begging for Chemo?

22 02 2011

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





Life, Unscripted: Beyond Chemo

9 02 2011

Theo puts the finishing touches on his Valentine's Day Card Box for school.


Part of my life, for now and the forseeable future, is scripted. The chemo regimen I’m on is not forgiving. I need to be at the hospital each Monday for blood draws and labs. These results ensure that I’m healthy enough to receive chemo. Once I leap that hurdle with flying colors (as I did this week!), I have two rounds of chemo — one on Tuesday, the other on Friday.

I’m on what’s called a Day1-Day4-Day8-Day11 regimen — with a one week break in between, and then it starts again. I’m on the schedule for a minimum of 24 treatments (12 weeks), before the doctors will consider (after a clean PET Scan) stopping or curtailing the regimen. In contrast, when I was a Stage 1 in 2005, I went through four rounds of chemo, period. Done.

Tuesday’s round is the longest and most brutal. I’m in the chemo chair (think recliner with footstool — it’s pretty comfy). The IV goes into the port on the right side of my chest. First I receive a bag of fluids that contains anti-nausea drugs. Anti-nausea drugs have come a long way in the world of chemo. These babies stay in my system and work for about three days — just long enough to get me over the hump.

Next comes the Gemzar (Gemcitabine) and Carboplatin, followed by the one I refer to as the “Magic Elixir” — The PARP Inhibitor, AKA BSI-201. Together, the three infusions take about 4 hours to travel from the IV drip into my body. While I’m waiting, I can do most anything — eat, talk to my chemo buddy/driver, blog, take part in a conference call, visit with somone who stops by (yesterday, it was a surprise visit from Molly MacDonald at The Pink Fund!)

The way home can get a bit dicey. Royal Oak Beaumont is a good distance from our house. It’s a 45 minute drive without traffic, but nine times out of 10, there is traffic and it takes over an hour (or 2 1/2 hours, as it did a few weeks back when I was with my cousin Christine!) The car ride gives me a touch of motion sickness most times, meaning only that I’ve got an upset stomach and don’t eat much when I get home.

Getting chemo means you often feel like you’re coming down with the flu — the body aches, pains, mild nausea. Very rarely do I ever vomit, thanks to the anti-nausea drugs. For that, I am so grateful. So, while I’m not Amy at Full Speed (this is a sight to see, I’ve been told!), I can — and do — spend time with my family before heading off to a pretty early bedtime.

Wednesdays are my worst days, Thursdays about 50 percent better, Fridays pretty good, though I go back for chemo treatment on Friday. That’s the PARP Inhibitor all by itself, so the infusion is much shorter — maybe an hour to an hour and a half. And the side-effects much less brutal. Saturday I won’t be feeling stellar, but I will be feeling pretty good.

But life goes on, despite breast cancer treatments. That’s the key. You can live a fairly normal life during treatment, albeit a slower version where I have to make careful choices of what I can and can’t schedule on the calendar. I’ve got to protect my energy levels, and make sure that I’m not in a crowd very often. I can’t afford to be around sick people, as getting sick would be reason to cancel or postpone my treatment.

But that’s not bad news. We get a lot of one-on-one family time these days, truly relishing in life’s simplest pleasures. Helping Theo decorate his Valentine’s Day Collection Box for school. Running pell-mell with him throughout the house, decorating the windows with Valentine’s Day vinyl clings. Sliding down the sled hill out back and skidding across the lake — whoomp! — into a snow bank. And then doing it again.

There is life beyond chemo — unscripted — and plenty of it.

This week is Amphibian Week at Theo’s school and he’s been invited to bring his American Toad and dwarf frogs to school tomorrow — “For the whole day, Mommy!” he announced after school on Monday.

Then his teacher called and asked if I might be up to coming to school Friday morning for just a few minutes to talk to his classmates about our frog and toad hobby, caring for and keeping them healthy, learning all there is to know about them. I’ll be there. I’ll also be at his school’s Elementary School Round-up later this week and a family bridal shower on Saturday. In between, I will be doing a lot of resting, eating healthy, refilling my empty tank. I’ll be blogging and working on a smaller scale than usual. Who knows? I might even throw a load or two of laundry into the washer.

I’ll be looking forward to my week off next week like a kid counting the days til summer vacation. That said, it’s important to note that life during cancer treatment isn’t black or white. It falls into the gray area of what you have to do, and what you then choose to do.

It’s not “I went from a happy, full life to nothing.”

It’s, “I went from a happy, full life to a life where I am still very happy, have to incorporate regular treatments for a while, but in between, can still do most everything I love and, most importantly, be with those I love.”

There’s a scripted part of my life during treatment, yes. But there’s also the unscripted. And, thank God, plenty of it.

Copyright 2011, Amy Rauch Neilson





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

25 01 2011

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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