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