6.30.2014

One Down

The kids fended for themselves as I laid in bed for days; meticulously timing by nausea pills to hours that were multiples of 4.

All I could do was assume the downstairs looked like a frat house on any given Sunday morning.

I could hear the occasional cabinet door slam, thanked PBS for its endless cartoons and waited for Lachlan to bring me yet another breakfast bar to open.

I listened as Merrick described in intimate detail how he poured the milk onto his cereal without spilling too much on the counter - but it was OK because he just licked up the mess.

I sighed and rolled over, wondering why sleep alluded me and damning the steroids I usually avoided, merely because they kept me awake. I made a mental note to have them removed from my regimen, for I noticed little difference in my nausea with or without them.

I made a mental list of my priorities, like buying room darkening shades, going back to work and exfoliating.

Then the light in the room started to started to shift, and the sound of the garage door opening was like the whistle at shift change. I was off the clock and could roll over in bed and enjoy chemo with my door shut.

6.16.2014

Lucky Me and the Fourth Opinion

I wouldn't call this a second opinion as much as a different opinion. Or maybe a fourth opinion. Or maybe just affirmation. Or maybe just my desire for a doctor that isn't passive.

Kyle and I had a clandestine appointment with a new oncologist, and were hopeful that she might be a tiny bit more aggressive and throw out some options other than maintaining the status quo until my lung mets were big enough to impact my life.

I was partly looking for confirmation that I'm doing the right thing in deciding to do another 6 rounds of that brutal treatment from last summer, but also interested in hearing the opinion and options from a doctor with a reputation for being aggressive and willing to trying anything. We got her name and a full vote of confidence from another colon cancer survivor - and the guarantee that she would indeed be balls to the wall about treating me.

During our visit, she reminded me of something I've already heard, but drove it home in such a way that left me feeling good about having cancer - or at least good about having my cancer. In all my talk of gratefulness, I'm always reminding the world that I still have plenty to be grateful for despite having cancer, and that's partly because of the type of cancer I have and how it has responded to treatment.

Not everyone responds to treatment, and I'm reminded of this all too often when I read stories and meet people whose loved one made it mere months, where I'm looking at years.

She reminded me that I have a chronic disease, and I will be treated as such. It's like I'm no different than someone who has high blood pressure or diabetes. I have a chronic illness, that with proper medication and management, can be controlled. I have the potential to live a long life (relatively speaking) with the right management of my disease, and the fact that I've responded so well to just the first line of defense is excellent. As has been pointed out to me before, they haven't even brought in the big guns yet.

And that makes me one of the lucky ones.

So maybe I can put my morbid outlook in the back of the closet for now. If anything, I walked away with the hope that there might be breaks, and I might find time to escape that damn pump. And there might be a chance for me to pretend to be normal for longer periods of time. And most importantly, that I can step back and really look at this in the long term.

She affirmed my decision to do 6 rounds of full-dose chemo this summer, and agreed that shrinking down what's there is the best idea.

I now have a little more motivation to get though those 6 rounds, and it's motivation greater than getting to wear my size 2 teenager shorts for a 3rd summer in a row, or thinning out my obnoxiously thick hair, or restocking my collection of wet wipes and baby butt paste next to the toilet.

Once done, and assuming the tumors shrink as they did last summer, we will revisit this doctor and consider some other options. That may mean taking a break, continuing with just Avastin (my non-chemo cancer drug that keeps blood supply to tumors from forming and has no debilitating side effects), considering surgery or doing something called RFA (radiofrequency ablation). She heard me loud and clear when I told her I just needed a mental health day away from the chemo life, and wants to help make that happen.

So maybe I won't have to go crazy after all.

My first round of FOLFIRI + Avastin is next Tuesday. I'm going to spend this week running my fingers through my hair without piles of it falling out, drinking multiple Chick-fil-A peach milkshakes in an attempt to pack on a few pounds, and pretending for one more week that I am completely normal!

6.11.2014

Post Kindergarten


I think I've more than clearly expressed how much I take nothing for granted in my post-diagnosis world.

And last week was one of those days.

I sat in Merrick's kindergarten class, trying my best to keep it together as he sang and danced around. And along with every parent in the room, my head toiled with both the angst and joy and expectation of a wide open summer.

But unlike every parent in that room, I had that extra layer of appreciation for that moment and the chaos that precedes a summer vacation that is so close these kids could taste it.

I fought back the tears as I watched him move around, collect accolades, show me his progress and mingle with his friends. I couldn't help but think back on those days when I wondered if I'd even be around to see him off to kindergarten, and here I was, faithfully wearing my infusion pump, witnessing him finish his year and soaking it all in. As tired as I was, I was basking in this moment.

He was so happy I was there, often distracted by my presence - clueless to the very real thought I once had of never being there at all.

In his first week of summer, he finally lost that first top tooth that's been dangling for months. And after noticing that he was riding his bike without the training wheels hitting the ground, we determined he could actually ride a bike after all. It's been a week of milestones that I bask in, watching my little kid turn into a real boy and taking it all in.
Photo bombing complete.
He burned rubber out of the driveway with no help from us.
Dear Orthodontic Fairy, please make them grow in straight.


6.02.2014

Using Grown Up Words

Merrick has the opportunity to attend a special camp for kids who have a parent with cancer next week, which has somewhat forced the need to usher him in to using those big kid words about what's really going on around here. He got a good dose of it during our 5K, when mom was clearly called out as a survivor and he heard the words "colon cancer" blared over a bullhorn all morning long.

Now that we've had that talk, I'm looking forward to him hanging out with those big kids that just happen to be walking his same harsh path.

Using code words in conversations about cancer has been our way of life around his overly-perceptive mind (and selectively listening ears). It's in the same realm of me spelling out everything S-A-N-T-A is B-R-I-N-G-I-N-G for C-H-R-I-S-T-M-A-S. We're continually amazed that he will pay attention to a conversation that is completely irrelevant to him from another room, but can't bother to hear us when we are staring directly at him and less than 3 feet away. Most days I feel like I'm already raising a teenager.

The time has come and gone when we referred to "mommy being sick" and having "bad germs in her body" and getting "special medicine," and started talking about all those c-words. Merrick now has a working understanding of cancer, and exactly what is going on inside of my body with the most grown-up of terms.

And as expected, the conversation went something like this:
Me: "You know those germs that are in mommy's lungs? They are called cancer. "
Merrick: "Yeah, I know that already."
Me: "And cancer is a very bad thing because it can make you so sick you die." 
Merrick: "Yeah, but you're really OLD so you're going to die soon anyway."
Me: "I'm not old!"
Merrick: "Yes you are. All you talk about is wrinkles and getting your face fixed at the doctor because it looks so old."
Me: "Leave my sun-damaged face out of this! Off topic!"
Merrick: "OK. Can I have a snack?"
Me: "So you have a good grasp of what's going on then?" 
Merrick: "Yeah. Did you know that Darth Sidious and Palpatine are the same guy? Why haven't you made my snack yet?"
It was only fair to finally bring him into the grown-up loop. It's partly his age, and partly the position he keeps finding himself in as one of my caregivers. Obviously not in the grand and powerful ways of a grown-up, but in the little but important ways of a child.

He has tried to heal me with excessive heart drawings, opened innumerable breakfast bars for Lachlan while I lazed on the couch, and just last week brought my nausea pills and a cup of water to the bathroom while I sat with my head buried in the toilet thanks to a post-treatment migraine.

I think that's when it hit me in the saddest of ways. My 6-year-old just fished around in my purse for a little red bottle of pills and had to see me in one of the worst possible states in the bathroom. No one wants to be seen when they're kneeling before the mighty bowl, awaiting the retching, damning anyone who turns on the lights. Yet he has once again become the one to help mommy in her most dire of needs and once again seen her in a position even my closest friends haven't seen me in since a few select nights in college and possibly in my early 20s and maybe in the parking lot after watching that Van Halen cover band. And it's in those moments that he knows to put someone else's needs before his own - a small feat for any small child.

I'm hopeful for his camp experience. I'm ironically excited that he gets to hang around with kids paddling his same canoe. I know he can't possibly grasp the importance of these peers at the ripe old age of 6, but I think in time he will. I'm sure in his little perceptive heart, he will know he is around his own people and this camp experience will do some good for his little soul.