Should you become an "expert",and if so, how?

Your chief job as cabana boy is to fight for her - support her, yes - but the whole process from initial discovery to diagnosis to treatment is confusing, complicated, not black and white in terms of choices and consequences, and if she is in the midst of trying to cope emotionally who else is going to be the one to help? Most of the hospitals do not have it figured out yet, to make it easy for you. In the business world you can hire system integrators who can assess your situation and then bring you a total solution, without you having to worry about which silo any particular part of the solution came from. Cancer care is still pretty specialized, you have your surgeon, your oncologist, your radiologist, and then if you are in a clinical trial, your clinical research nurse. They have started a person at Swedish Hospital who is supposed to be a single point of contact and help you navigate the system. Bad solution. Because all they are trying to do is figure out how to help you deal with the silos, rather than fixing the problem. We were fortunate to be able to ask, and have our oncologist commit to being our team quarterback. That helps, but I suspect the average person is shuttled from one part of the process to another without an overall perspective on where they are are going and being able to have an integrated view. I shudder to think of the people who are not educated patients able to devote time to working both the system and the range of solutions.

Waiting rooms.....

I’m not a really patient person. But when you’ve got a patient on your hands, waiting is the name of the game. We have spent a lot of time in waiting rooms. Inevitably we bring a host of things to keep us occupied: iPhone, books, Kindle, magazines. Often I just end up people watching. Mostly we use our iPhones and update Facebook, check and write emails, respond to text messages from our concerned friends, or I sometimes play Scrabble - an iPhone app. When we are together we are often holding hands so you learn the art of one hand iPhone manipulation. But when she’s off getting blood draws or scans it’s just me hanging out. I like to watch the reception staff - it tells you a lot about the ethos of the place. Swedish Cancer Institute is great - they greet people and get to know people and you hear a lot of “Hi Honey”, or Hi Sweetie”. Lots of arm touching and small hugs - pretty meaningful to the people in for treatment. It’s interesting to see the range of people, meaning at various stages of treatment. The ones in the thick of it - looking and feeling pretty awful. Offset by the ones who have come out the other side, hair growing back, a pep in their step, a smile on their face. Of course Meagan looks fantastic, as she doesn’t appear to have cancer, so sometimes you get the feeling people are looking at her and wondering, what the hell is she doing here messing up our ‘hood - this is for CANCER patients. I sometimes feel like standing up and announcing, “we are here for a reason - my lovely wife has fuckin’ metastatic melanoma!”. Being the well behaved person I am, I don’t though, I just smile sweetly when we make eye contact and I see the curiosity in their eyes. Keeps ‘em guessing.