memorable memorial day

Yesterday was the first day I haven't felt like I am going to jump out of my skin, first day I haven't shed a tear all day.

The calming process started with me moving into cheaper digs then moving the furniture around to my liking (clearly not decorated by a homo!), finding a Trader Joe's nearby with my favorite comfort food, finding a meditation center within walking distance, getting to know other cancer family members and of course Tad's health continuing to get better and better.

The decision whether to go back to SF and get some of our belongings and a car was immensely painful. Staying seemed like the right thing to do and going did too. When you're living one day at a time with no obligations - there is very little to tether your decisions to. Everything seems in movement thus some decisions seem impossible. And so I've stayed put.

It is good to meet other people dealing with leukemia. There were times when I felt like we were martians.

It is good to become acquainted with my neighborhood (just west of the UW-Seattle campus) and all the little shops, bars, students and bikes.

It is good to have some simple rituals: coffee at the Ugly Mug, daily walk across campus past the huge reflecting pond, chat with folks in the community kitchen.

More than anything it is good to have Tad being cared for by people who visibly know this pathology forwards and backwards. This place is nothing like UCSF where people hemmed and hawed about transplant. Here it is very clear that we all share that same goal and that time's awastin'.

Tomorrow they will put in a new central line so that Tad can start getting chemo. They will do a bone marrow biopsy so they have a clearer picture of what's going on in the bones. They have him on a floor surrounded by leukemia and transplant patients. Even though all of the details have not been worked out - and there are some biggies -- it is clear that the team are moving him toward transplant - the only possible procedure to rid him of his leukemia.

The oncologists would not do these things if they didn't have treatment options, if they didn't think these options might get Tad into remission or if they thought he was too sick to receive treatment.

We've entered the world of clinical trials and these are rigid by nature. I'm beginning to see it's very easy to "disqualify" someone from a clinical trial if they have anything that is not perfectly in line with the protocol. As Dr Estey pointed out - some folks make it impossible to recruit because the inclusion criteria are so unrealistic.

One doc is a naysayer and unfortunately he is Tad's attending oncologist at the time (the badgering guy from ER who I already wanted to punch in the face). Normally he is one of many oncologists who do two-week rotations on the floor. With a little luck we're approaching the end of his two week shift.

I'm aware I feel less called to be polite and circumnavigational with these folks. I feel like by keeping the tone polite, by not asking cumbersome questions, by not speaking my truth I stayed with our previous doc far too long. And he possibly did irreparable damage.

A French historian made a name for himself when he began studying hospitals, prisons and sanitoriums. He wrote incredible stories of the power dynamics that infuse every relationship in these places. He suggested that something similar plays out all around us in society. He wrote so eloquently that it changed the way social scientists think about power dynamics today.

So let's see: One one side there is a man, lying down, physically tired, living with a sword of Damocles over his head, paying to be there, and possibly dying of a disease he can't possibly comprehend. On the other side is a handsome man, with a group of students following him around listening to his every word, he has no visible illnesses, he is well educated and well paid and he knows an incredible amount of minutiae about the disease that might kill the other guy. Oh....and he has access to the meds that might save the other guy's life.

You tell me: Any chance there might be a bit of a power differential in this picture?

You'd think this guy would be a tad more attentive to being accessible to the patient, open to questions, speaking in ways that are both kind and comprehensible, perhaps bending down to put himself at the patient's level...
Just sayin'.

PS We're secretly hoping we will get a short break between now and the beginning of chemo so that we can slip down to CA and collect some of our fave belongings. Some of the docs feel this is completely possible.