stanford hospital - day five

Stanford hospital wanted us to be in Oncology early Wednesday morning: "We need you here at 9AM." This meant loading the car with Tad's belongings for a month and slogging through crazy Silicon Valley morning traffic - an idea that makes me shiver with anticipation.

I called to ask for an extension and they never called me back. When after forty-eight hours I rang to get a reply they called back with a completely different answer because they hadn't really understood the question. The day before our arrival I finally spoke to a human being and got things squared away so I would at least know where we were going. I decided to pick my battles and not say anything about my feeling of not being respected in the face of this cavalier behavior.

So I was only half surprised when we arrived and the staff kept asking questions as if they knew absolutely nothing about Tad and our arrival there. This went on for about 48 hours.

Turns out in the three weeks between our initial meeting with the oncologist in an outpatient clinic and our arrival there - no one bothered to collect our files from Tad's previous hospitalizations.

When the attending oncologist finally came through for rounds and explained to us that it would be a couple days before starting chemo - Tad and I both politely but very firmly expressed our discontent.

(Keep in mind that during this whole time we're in a sort of basement room which is a bit dark despite the beautiful gardens outside, it's very technical in case of emergency despite the warm color and the flat screen TV, people have to gown up before coming in the room except me for some strange reason, and it sorta feels like very costly captivity - so you don't want to just come here to do crossword puzzles for three days).

Here's how I imagine the scene would flow in a normal setting:
Doc: "Oh I'm sorry to hear you're upset. Yes I think there must have been a mistake because no one told us about your meeting three weeks ago with Dr Medeiros hence we don't have your files from the previous hospitalization. We're sorry. Plus we like to have fresh data if possible so we're just going to run some tests then get started - it should only be delayed by about 36 hours. Please bear with us."

Patient (and/or charming husband): "Well that's a little frustrating since you've had at least three weeks to get those files but thank you for telling us. We'll be more patient."

Instead it went something like this:
Oncologist: (Extremely uncomfortable, looks down at the floor and takes two steps back).
Fellow: (another much younger doc getting trained in hematology-oncology jumps in as part of her schooling) "Well we're doing everything we can to help you. We just want to make sure we have the right treatment and for that we need a clear picture of your leukemia."
Tad (or me): "You mean it's not going to be the treatment we decided on three weeks ago with Dr Medeiros?!?!"
Fellow: "Well probably - but we need to do a bone marrow biopsy."
Me: "Tad just had one a month ago. So I don't understand - you're inferring it may be a different chemo. Who is our treating physician here?"
Oncologist: "Dr Medeiros" -- then the standard stuff about training hospitals and rotating staff -- and various other banal phrases he mumbles while looking anywhere in the room but at us...
Tad: "But I had a bone marrow biopsy done about one month ago"
Fellow: "You mean after you got your last round of chemo in Seattle?"
Tad: "No I never got chemo in Seattle."
Fellow: "Oh but I thought you were referred here by Dr Estey in Seattle."

I'll let you imagine the rest.

After this exchange and others similar to it I asked the very sweet social worker for some guidance.

She told me that the first few days are often awkward because the team rarely has the big picture of the patient, that documents rarely arrive as planned from other hospitals and that docs tend to have the very bad habit of thinking out loud - a highly anxiety-provoking way to work with new patients.

I kept thinking it wouldn't be quite so bad if 1) this weren't Stanford - arguably one of the best medical centers in the world and 2) these people weren't extremely well-trained and well-paid experts in medical care. If they can't get down a first encounter with a patient then who can?

As I speak to the social worker I become aware that this is about a very old wound: the feeling of not being seen for who I am.

Surely these folks understand we're both well aware this chemo might save his life but it also might kill him. Surely they get we've been through 15 months of hell living day in and day out with night sweats, chemo, diarrhea, fear.

They don't even need to know the more gory details such as the number of times doctors as imminent as them have told me that Tad isn't going to make it through the night or even better "Get your affairs in order", the medical euphemism for "You're not going to make it through the week/month."

What's missing from this picture for me is empathy: the willingness to stop - even for a few seconds - and use your imagination to wonder what the other person might be going through. In that short stopping and wondering before you put your hand on the doorknob - you take in the other person's reality for a brief moment and it changes the way you are with them.

I can't imagine these folks -with their incredible wealth of knowledge - don't have space left in their brain for imagination.

While we were at home in Santa Cruz we had in-home nurses giving Tad a saline drip at night to keep him hydrated. One of them had a beeper go off during our appointment and it suddenly occurred to me: "Oh of course he has other patients". The talent of this caregiver was that during those 45 minutes he was so present to us that we could almost fantasize we were the only patients in the world.

It lead me to wonder: why would it be in a caregiver's interest to make it clear to you through their verbal and non-verbal behavior that they have lots of other patients besides you?

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I was told by a dear friend that I work best when I have a "bad guy" - a phrase that I didn't really want to hear but which seems to be true. I imagine this is one of my strategies for living with the painful reality of hovering death. At the same time I do know that gratitude is an amazing healer for me. So let me finish by sharing some of the things I'm really grateful for:

1 - I am grateful that Tad is in good spirits, is alert, is in a quiet room with a view of a garden and is surrounded by top-notch professionals who are clearly prepared for the  period of sickness he's about to go through from chemo.

2 - I am grateful that the wonderful Scott and Emily have loaned me their mom's house down in Silicon Valley where I can sit outside in the morning and sip my coffee, do yoga, relax to the silence. I'm grateful for the gentle evening sunset light on the coastal mountains above us.

3 - I am grateful we have this opportunity against all odds to try to stop the leukemia again and not give up. I am grateful we have a team of professionals willing to take that risk even though they know it might kill Tad.

4 - I'm grateful for Sara who is house-sitting in Santa Cruz, Ian and Jeff who are staying at my place in SF. I'm grateful for Ron and Damien who visit and take care of Tad's garden, Kim and Jim who are growing vegetables for us for the Fall and for the many friends who call and send messages.

Maybe I should have started with the gratitude part...