What do you Expect?

Way back in 2001 or 2002, during or right after chemo for breast cancer, I agreed to walk a 5K. Before cancer, I had run many 5Ks, 10Ks, half-marathons, and 4 marathons. I knew how to run a 5K: As fast as I could. I didn’t know how to walk a 5K. But I couldn’t have run if I’d wanted to, which I didn’t. How bad could it be? At the one-mile marker, my watch read 18-minutes and change. 18 minutes. 18. In the 5K race I was more familiar with, I wouldn’t be far from crossing the finish line at 18-minutes. I was appalled. I don’t know what I was expecting… yes, actually, I do. I was expecting to go FASTER. Maybe clock a THIRTEEN minute mile. That was my expectation. Much later, I appreciated the fact that I was out there at all. But on that hot summer day at that Track Shack race in Orlando, expectation brought disappointment. Cancer has made that happen more than a few times.

Through the ensuing 12 cancer-free years, I have had all different levels of expectations, some of which materialized, some of which didn’t. None of my expectations had a potential life-or-death outcome (although if you’ve ever experienced an Orlando Magic game with me, you might disagree. I have died 1,000 deaths being a fan of that team and expecting them to win. If only an NBA game were 3-quarters long…..). I have also learned and come to appreciate the difference between expectation and hope. Because though I hoped mightily that cancer wouldn’t come back into my life, I really never expected that. So when the beast reappeared in 2013, I wasn’t devastated.

This next part may sound callous or ungrateful to you, but hear me out. My first CT scans since being in the Sutent trial showed brilliant response, if you remember. The tumors shrank more than 40-percent, an unforeseen and thrilling first outcome. But when friends jubilantly suggested that we celebrate, I balked. I have learned that expectation has no place in cancer. Even Dr Rajan says this explosive start doesn’t foreshadow continued good results or even good results at all. Expectation might mean I sit back and wait for continued success. Hope means that I am already tracking another clinical trial should this one falter. In the grand scheme of things, celebrating felt like throwing out a double dog dare to the universe. I LOVE the great results, and they fill me with great hope and immeasurable gratitude, but understand that for me anyway, it stops at celebration. This is, after all, my third go-round with the beast.

Hope has replaced expectation for me. I am full of hope that this drug regimen will knock the cancer to its knees. Dr. Rajan says of 200 people in the study, only one has been “cured,” so expecting that to happen would be a waste of time. BUT, there are mechanisms in place for if the tumors become too small to track. And because I am ever hopeful, I asked and now know what would happen in that case. (2 additional rounds of Sutent, then I’d be drug-free, until the tumors started to grow again.)

I went back to the NCI last week for a blood panel, and my Neutrophil count was 2200, way way way over what I needed to get on the fourth cycle of Sutent. I am cautiously optimistic (and hopeful!) that I can plan my summer in 3-week increments. In fact, I have done that all the way to July (with back-up plans, of course).

So how do I feel? Well, the weeklong “drug holiday” (I love that. The NCI has a sense of humor.)  apparently isn’t long enough for my side effects to completely clear out. I can’t taste much anymore… although that hasn’t stopped me from eating. I get blisters in my mouth, I’m constantly dehydrated, I get heartburn, my blood pressure is high and worst of all, my resting heart rate is ridiculous. It’s usually about 64 beats per minute. Yesterday, it was 98, first thing in the morning. That makes for some pretty slow miles on the bike and in the Newtons. And you know what? I’ll take it. I’ll take it all. The trade-off is way worth it. I’m not complaining. I just don’t want to respond to the question with “I’m fine.” There’s more to it than that.

All that being said, there is something that I do expect of myself, and that is to seek adventure, of  course. In the last few weeks, thanks to my brother, I have seen two Stanley Cup play-off games. GO CAPS!

We went to Saint George for Patrick to race the half-Ironman. It was a great weekend with great friends that included the Best Location for a Long Run Ever…

…. a stop at the world famous Veyo pie store. I had pie for breakfast (lunch and dinner).

… and a Clark Griswold family-type visit to Zion National Park (“Do you have to get out of the car to take the picture? Can’t you just take it through the window?”)

(Of course, we got out of the car here, on the way home

Now, I am about to leave for Portland to race the half-marathon for Team Chocolate Milk. This is my favorite distance and type of race. I can’t even count how many I’ve run. I used to sign up for half-marathons so I could use them as long runs in training for even longer races. This is the first time in my life I’ve had to train specifically for a half-marathon. Besides teaching you that having expectations can be a lesson in futility, cancer makes you humble! The race folks asked how long I expected to take to run on Sunday. I told them 2 hours and 15 minutes. But doing the math from my long runs these last few weeks, I won’t make that. I HOPE not to have any 18-minute miles, but I can’t promise that. I can promise that no matter what happens, I will have a really great day, and after however long it takes me to run the stupid course, I’ll be in PORTLAND. You’ll find me in a coffee house. Or a bike shop. Or a beer garden. Or maybe at the organic catnip booth at the farmer’s market. I can only hope.