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




19 responses

9 02 2011
sean oconnor

Amy, u rite rilly rilly goode.

Rock onward,


9 02 2011
Amy Rauch Neilson

Thanks, Sean. And just when I was feeling my latest post wasn’t “up to par” — it is, afterall, the day after the worst chemo treatment of my week. Whew! Guess I haven’t lost it after all!

9 02 2011
Linda Stanislawski

I admire your determination and outlook. God bless and give you the strength you need to get through each day. Praying for exceptional results from your treatments

9 02 2011

Hi Amy,
You are such an inspiration. I have three other women in the office that would like to subscribe. I lost your new blog address. What is that again?

Thanks Amy!!!!

9 02 2011
Ken Peters

Dear Amy,
On the practical side, have you looked into
The thing that is frustrating for me is being in a position of not being able to help you in any way. Perhaps this might.

9 02 2011
Danielle Neilson

You are awesome Amy! I love you!
Tracey, the new address is

9 02 2011

Valentine’s Day just happened to be one of the funnest days at school!! Great Memories!! Amy looking forward to hearing from you soon. Kel

Don’t over due!!

9 02 2011
brian Murphy

Oh, Amy, you DO write well, and you got the whole deal right at the end of today’s blog” Love IS the Answer! (Maybe listening to the beatles would help.)

9 02 2011
Amy Rauch Neilson

I so appreciate that, Brian! Today is the worst day of the week for Chemo Brain, so I was unsure as to how well I actually wrote that post! I feel much relieved after your input.

9 02 2011
Henri Russell

I am so in awe of you. You are doing such a great job blogging this experience and letting other that may be in the same situation know that as you say, your happy life goes on, just at a slower pace. It give you time to “smell the roses” and enjoy everyone around you. God bless you and you should know you are in my prayers.

9 02 2011
Carol Clemens

Dear Amy:

I share Ken’s frustration that I’m not near enough to be able to offer help. But I remind my prayer partners of how important our support for you is. And it amazes me that you can write with such clarity in the midst of your regime. When it’s bad, close your eyes and imagine all of us wrapping you up in a blanket of love, and holding your hand until you drift into relief. Thank God for these newer meds!


9 02 2011
Sherri Novis

This was so helpful trying to imagine what you are going through. I was so grateful to see that you still get to do some of the things you love. Then the laundry comment hit… and I thought about how unmanageable life is when I am healthy and just trying to take care of myself. It must make it near impossible to keep the basic home support moving… Wish I could come do some basics for you. I love you Aim – you are a SUPER WOMAN!

9 02 2011

My favorite post yet! LOVE IT !!

9 02 2011
Tracy Jani

I am a friend of Marnie Fender and she shared your blog with me. I have to be honest – I was going to check in briefly and subscribe to help – but I ended up staying for a long time. You are a gifted writer with such an incredible story to tell. I wish you the best – and that you kick this pain in the breast thing for good this time! By the way, I LOVE the t-shirt. Being able to find humor in the big, bad “C” word – cuts its menacing power into little itty bitty pieces! I look forward to following your blog to your recovery – your writing shows a strong spirit and I know it will get you there!

9 02 2011

I love the honesty of it. I think others will love hearing about your everyday life and could feel the warmth that’s inside of you, that even though you are battling this horrible thing, you are still enjoying everyday life and yes, life does go on even while getting chemo. I think after knowing what my vision/thought was of Chemo, then witnessing it first-hand with you, you captured it perfectly for others to know who don’t get to see if first hand. While this SUCKS that you are going through it again, I’m so happy to be sharing this journey with you! You are a fabulous writer and I look forward to reading your posts every day. Love when you add a picture, too! Theo’s sooo cute doing his Valentine box.

Forever #5 BFF !!

Hope you aren’t too sick today……….rest and take care!


9 02 2011
Scott Orwig

Amazing post, Amy, that does so many things at once. It paints a picture of the chemo experience for those of us who haven’t (yet) lived it, dials down the fear for everyone, tells some great motherhood stories, and inspires us all.

Some of the great American writers were known for their drinking. Maybe chemo is the new writer’s cocktail?

9 02 2011
Pat Douglas

Amy, I really hope that you can reach your goal and you get published. I think that you could help so many people who are going through the same experiences. I find myself saying over and over that this is not fair. No one should have to go through this twice. I truly applaud you for your courage and willingness to help others through your journey. You are in my prayers.

9 02 2011

Your such an inspiring woman!!!!

10 02 2011
Naida Okray

Amy, I do not know you, but am truly inspired by you and your blog. My prayers are with you. Stay strong.

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