Laura Ingalls Wilder and Me, Part I: In Which A Pioneer Runs Into A Herd of Grizzly Bears and Must Flee

full of pioneer spirit since 1977

From my earliest days as a binge reader, when I would check out the entire Little House series from the school library and read them all cover to cover, I'd imagined myself as a pioneer girl. (Clearly, as the above photo evidence suggests, my mom also had that vision for me.) But then I got older, and realized that pioneers got really dirty, and they hung around outdoors all the time, and they were not deterred by bugs or mosquitoes, and they did not have many books, and they were only allowed one pair of boots..and I so I left my pioneer wagon by the side of the road and went off to find a cozy chair and a large pile of books. And that was that.

UNTIL NOW. Now, I am doubling down on my pioneer dreams and tying that bonnet back on my head, because...I am IN A CLINICAL TRIAL. I am at the frontier of scientific change! I am a part of the cancer revolution! I AM FINALLY THE PIONEER GIRL OF MY DREAMS.

Let me tell you all about it.

It all started back in January, when I had two glorious weeks in a row that indicated my platelets were happily teeming through my bloodstream. (169K! 114K!) There was no reason for this, but we all high-fived each other anyway. In addition, my latest scans had shown stability. I'd been on the same maintenance chemo for 21 months (Xeloda and Avastin); it was still working. And so, my oncologist said, "I think the stars are aligning. Let's go for a clinical trial." I had, of course, been badgering him about clinical trials and which ones might accept me and so on and so forth for many, many months. And he had been keeping an eye out for opportunities, especially for opportunities right here in Denver at my cancer center. And now, in January, with my platelets inexplicably looking great and disease looking pretty stable (immunotherapies take longer to work than chemo so it's not ideal to start one if your disease is on the move),  two possibilities popped up: one at Sarah Cannon's Denver site, and one at the CU Cancer Center. Both were Phase I trials. They both looked very promising, and the Sarah Cannon study had an opening right away. Kismet!

I filled out the paperwork. I visited Sarah Cannon, went over the paperwork again ("You are giving up your right to establish your own schedule, to have any sense of autonomy, and to leave town, go skiing, or do pretty much anything, really, for an indeterminate amount of time in exchange for the opportunity for us to pour some medicines into you that haven't been tested on humans yet. Buckle up!") Dr. Sarah Cannon Trial Guy was very affable, knowledgeable, and patient. He answered all of our questions and explained in detail how the drug combo (it was a three drug combo) would work. Then the nurse took some blood and said they'd be in touch within the next day or two and we would get started. Wow! So easy! 

But hold it right there, Ma! You're not going to earn yourself that cotton handmade bonnet and a seat behind the oxen with Pa just like THAT. You, of all people, should realize that things don't go this smoothly. And sure enough, the next day, Dr. Sarah Cannon Trial Guy called me and said, "We have a problem. Your platelets were 42K. We can't allow you into the study. And actually, since your platelets are so erratic, I wouldn't feel comfortable allowing you a slot in any of our trials. I'm terribly sorry." I said okay and thank you and hung up. It was a big blow. Not just no for this study, but a a major trial center door slammed shut loudly and thoroughly. No trials, maybe ever. None. Sure, Dr. Sarah Cannon Trial Guy was just one doctor, but Sarah Cannon is a big deal. They oversee hundreds of trials each year. It was grim news. 

I gave myself a talking to: traditional medicines are still working for me; this is not the end of the road; maybe someone will finally figure out my platelet problem. Maybe there are studies that don't care about platelets (immunotherapies, unlike chemo, don't attack your platelets like chemo does).  And so on. But the pep talk didn't work. No trial now, and maybe forever. No treatment plan in place (I have to have a plan. I ALWAYS have to have a plan.). It didn't help that winter wasn't just coming - it was here (seriously - it was February).  So I sank into what I now realize (but didn't see at the time) was a pretty deep depression. The world felt so far away. Nearby, it was just me and my pioneer backpack and a broken-down wagon, in the middle of some desolate (bug infested, sharp shards of grass covered) prairie, trying to make fire by scratching a deep hole in the dirt with a stick I'd found. (Of course, anyone who knows me knows that there was zero chance of a prairie fire - virtual prairie fire, that is - because the only way I could make fire would be to get struck by lightning. But I digress.) 

the saddest wagon in the world

I lingered here in my pathetic little space for several weeks. Some days, I just slept. Other days, I slept, took a bubble bath, went downstairs (big deal) and faked it with my family. It felt like a Herculean effort to dress and leave the house, so I basically didn't. I texted people, because texting is easy and no one can easily call you out for faking it. I obsessed over politics. I couldn't read for pleasure. (Total books read in February: 2. Abysmal.)  Even "Friends" offered no respite. I berated myself for feeling like this. My disease was stable. I could restart my maintenance chemo and try again another time. Worst of all, I knew I should be enjoying every moment, squeezing all the lovin' out of life, shouting out from the rooftops how glorious it is to be alive, having daily cuddle piles with my kids, watching new movies, playing board games, planning a trip somewhere...but almost none of that happened. And that made me feel even worse. Of course.

Just around the time I realized that maybe I needed to talk to someone about these depressive feelings, I had a doctor's appointment. Find out about it here...