Cleveland, Here We Come!

The trip to Cleveland Clinic (CC) exceeded our expectations. It was a model of professionalism that is still a little unbelievable.

Karen and I traveled up to Cleveland the night before her appointment so we would be well rested. We didn’t really know what to expect from the visit and were a little nervous, but having just been through the new patient routine with the James we felt we knew what to expect.

We were impressed with the efficiency of the check-in process. The staff greeted us immediately upon entering the office and checked Karen in quickly. When that was finished, we were shown right back to triage without even being seated first.

The triage process when visiting a new office is usually a bit irritating. Most often during this part of the process you get asked questions that you’ve already answered twice. But the nurse during this visit indicated that “Oh, you’ve filled out the forms… this will be easy,” asked a few follow-up questions, took her vitals, and showed us directly to an exam room.

I doubt we were in the office five minutes before we were shown to an exam room. Karen and I were talking appreciatively about this when the first doctor came in to greet us.

The first doc was what’s called a Fellow, which is a surgeon who has chosen to specialize in a specific area of medicine. For the story’s sake, I’ll refer to him as the Fellow, and the main surgeon as the surgeon or doctor, even though both are surgeons with doctorates.

We spoke with a Fellow first at other centers as well, but this experience was a bit different. They always started something that felt more like “who are you, and what do you want,” and included the doctors reading through the file while we were present, looking up tests and information we pointed out during conversation. This Fellow at the CC had our file open as well, but used it for accuracy during the conversation, not for reading material.

He came into the exam room already having already read all of Karen’s file with enough thoroughness that her medical history was fresh in his mind, including tests she’s had, medications she’s received, and complications she’s had. He spent his time sizing up how Karen responded to the things in the file, and asking her for her impression of them. It was a comforting conversation because it showed that they already spent significant time learning about Karen and her history. We wasted no time.

What do we find comforting? It’s important to me that we don’t cloud this issue, because we don’t view it as puppies and rainbows. Not even kittens and rainbows! We want the best medical care for Karen. Each time the two of us work with a new doctor we run through an evaluation process much the same as we do with business. We ask each other if we like the doctor, and then why. We list the things we like, and the things we don’t, and try to size up our confidence level, and evaluate our reasoning.

All we can do is judge a surgeon by our interaction with them and their staff, and up to this point during the visit both were professional and efficient. When the Fellow finished up his conversation with us we settled down for the “long wait” for the surgeon… Which lasted about five minutes.

Much to our surprise, it was immediately obvious that even those five minutes weren’t wasted. The doctor came in already having discussed key points with the Fellow. When we’d visited other institutions, it was always a day of telling the same information (that the doctors should already know) time and time again, but not this visit.

By the time we left we felt that we had options we didn’t have earlier that morning. We spoke of the choices available, the dangers and opportunities, and for once it seemed like the doctors were working toward the same goal as ours. Up to this point, everybody else seemed to be working on a delaying action, but the surgeon at the CC laid out plans for how we might achieve remission. Okay, our plan is for a cure, but to do that we all agree that we need remission first.

The doctors at the CC believe that the best chance for remission would be achieved by surgically removing the tumors and treating whatever they can’t remove. This would be followed up with treatment which may include clinical trials not offered to us at the James or Zangmeister centers.

I’ll post updates when I have them, but tentatively, Karen has surgery scheduled for April 14^th. The doctor urged getting the surgery date set on his schedule, but his office is also working on a list of clinical trials for Karen to consider as alternate courses of action, and running their own array of tests on the biopsy samples to look for more information, and better options.

We were struggling to find even one path to some sort of remission, and sizing up options near and far. But it now seems like we have a support team working to provide an array of medical/surgical options only about three hours away. We’ll continue to do things ourselves to keep Karen as healthy as possible, and our friends and family continue to offer love and support to keep her in the fight mentally as well. Hopefully we have a more well-rounded team now.

I’ll follow up when I can.