There’s a part of Brené Brown’s The Gifts of Imperfection that discusses the idea of expectation. How if you tell yourself you have ZERO expectations for name-your-thing, that you’re not actually protecting yourself from disappointment or that you don’t care. Instead, you’re denying yourself the joy of the thing happening or the support if the thing doesn’t happen.
I’m paraphrasing, but I think about that idea a lot, particularly as I consider where I’m at with the Portland trial.
By 99% of accounts, I’m in. I signed the consent; they gathered a ton of medical history; and, from a medical standpoint, everything looks to be in order.
Enter health care insurance bureaucracy. I can’t get into the trial until I take particular tests (blood & CT; oh how I wish they were written exams). To take these tests, I need a referral. I was told a few weeks ago that I couldn’t get a referral until I got into the trial. Welcome to the “who’s gonna pay for what” catch-22.
Luckily for me, the PI personally knows my oncologist so she left him a voicemail on his cell phone requesting the referral ASAP. Unluckily for me, the referral did not come through while I was up there, so I’ll be headed back in a few weeks to do this last push of items to make sure we’re 100% good.
Some good news: I’m an ideal candidate. My disease activity, health and age are exactly what they are looking for. The trial was actually closed, but they opened up a spot specifically for me since I’m traveling from Southern California. The preliminary results of the study are being released in November and the outcomes so good, they thought they might have had the data wrong.
Which brings me back to expectations. The little pragmatist that has grown inside me these past nearly 4 years is convinced something will go wrong. The optimist (she’s bigger and stronger) is really, REALLY hopeful. She’s gunning for the possibility of it all. For getting into the trial with no further issues, for good outcomes, and really, for everything.
For me, it’s all about balancing these potential realities (and the many others that fall in between). Anything is possible. Something will go wrong (that’s just fucking life, man), but it will also be okay.
I hope you get to celebrate the joy that may come from this trial with me. And, I’m grateful that if it doesn’t go the way I hope, you will also lift me up and support me as we move on to the next option. (And there are MANY options. It’s a good time to be alive with cancer.)
More to come…XO