The last week has been a continuation of the roller-coaster ride. Karen delayed the chemo last week so she had more time to size up the situation, and simply to have some time away from the chemo.
After being turned down for the clinical trial we reached back out to the James Cancer Hospital for advice. We’re still trying to move past our initial rocky experiences to establish a productive relationship with somebody there. Karen’s appointment is in two weeks and they have asked Karen to forego staring a new treatment at the Zangmeister Center pending that meeting, in the hopes she can start a clinical trial for one of the new immunotherapy treatments at the James.
We’re a bit concerned that if she stops treatment for another couple weeks, and then still has to turn elsewhere for an opportunity at a clinical trial, that we’ll have lost a lot of time. The nurse at the James said she would bring this with the doctor prior to the appointment. It seemed like a good conversation and was a positive interaction with the James. If we thought it was a roller-coaster ride of uncertainty last week, I’m not sure what to qualify it as this week.
We’ve had an overwhelmingly negative experience at the James, with the specialist we’re now relying upon, and his office. And that’s not a comfortable situation to be in, not that anything about cancer is comfortable. But the stakes seem even higher with the decisions we make now, and the options less certain. Or maybe the risks are the same, but the options poorly defined, and the outcomes less predictable. That’s not quite right either. Perhaps it’s clear that our ability to size up the situation is a little cloudy.
What is the quote from Frank Herbert’s Dune? “Fear is the mind-killer. Fear is the little-death that brings total obliteration.” Right now we’re trying to avoid making decisions based upon our fears. But there’s more to that quote from Dune, and I think it’s rather appropriate to our situation…
I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when my fear is gone I will turn and face fear’s path, and only I will remain.
So, how do we move beyond choosing paths based upon our fears, when each path seems to instill a different fear? The Zangmeister Center has provided us world class service and support, but lacks the right clinical trials for Karen. This is the path that is easiest to choose, and it offers comfort and support.
The James has provided really lousy service and no support (yet), and we don’t even know if it has the right trials, let alone know if Karen qualifies for them. The fear about placing trust in the James seems well founded to us. We’ve been treated unprofessionally, and this was a shocker for us, given how highly they are regarded. Choosing the James instills a fear that we’ll be giving up the extremely professional medical care Karen receives at the Zang (what we call the Zangmeister Center).
There is an example I’d like to provide which paints a picture of what we see when we look at the Zang path. A few months ago Karen had a complication from the chemo that required a minor surgical procedure. When we visited the center with the problem, it was our surgeon’s day off. Even though other surgeons at the center were willing and able to perform the procedure, our surgeon insisted on coming in to care for Karen himself. From diagnosis to completion it was probably only a couple hours, on his day off. We KNOW that if Karen has complications that she will be well cared for at the Zang. Every interaction, during every visit, with every person at the Zang, has been professional. Every time.
Many of our friends have spoken very positively about the James, so we are open to the idea that the same service is available there. We don’t need to like the doctors, and frankly, this isn’t even a qualification for us. I don’t particularly like Karen’s surgeon at the Zang, but he’s fantastic, and I’m grateful we have him to rely upon. He and the people he surrounds himself with are professionals, and Karen needs professional service, so we respect him and his staff. It’s just not been our experience at the James. Our experience is admittedly anecdotal, even so, we feel that turning to the James is a riskier choice for us, because we fear that the lack of professionalism we’ve received so far will extend into the medical services we will receive, if we choose to rely upon the James for treatment.
The Cleveland Clinic has seemed just out of reach for Karen, but seems a little closer this week. We’re working on getting an appointment there now, instead of keeping all our eggs where they are. The drive up there isn’t so bad, and our opinion of the clinic is high, so there is a third path yet to explore. We’re trying hard not to just choose what is comfortable, or choose for convenience sake, so the James is still our current focus. In many ways, it seems just out of reach. We were exploring switching to the James early on, and the doctor there told us not to, so this isn’t our first time reaching out. I’m confident it will be our last, for better or worse.
In business we rarely take the easy path. It’s been scary at times, but overall we’ve made more good decisions than bad ones. We’re trying to do the same with this.