stanford day 13

I'm sitting in my apartment in San Francisco while Tad is lying in a bed in the basement of Stanford Hospital.

This hospitalization has been tough on us but not for reasons one might imagine.

Tad is doing relatively well. Normally on day 13 of a chemo protocol he is really sick - (think profuse sweating, abundant diarrhea, lack of appetite, confusion, loss of weight, etc).

But he continues to wear his own clothes (impossible when you're really sick), takes walks to the nearby garden and atrium, doodles on his computer, and talks with friends and family in person or by skype. He has some difficulties with his GI track mostly a sore throat which makes talking a bit painful. But what is usually a roller coaster is feeling more like a fast ferris wheel.

He is on a highly technical unit. There is a zone in front of each room where guests suit up and glove up. If he leaves he must wear a high-tech hexa-mask. We never see the other patients because they are so sick behind closed doors. Most of them have a family member in their room with them full time (in part because hotels are so expensive in the wealthy Silicon Valley). I get brief glimpses of these family members during my runs to the kitchen for ice water, to reheat a meal or to get a soothing pop-sicle from the freezer.

In the evenings I return to a big empty house in a very tony neigborhood that is generously on loan to me by sweet friends who just inherited it (Yes you guessed it: someone just died in it and not much has budged since her corpse and the hospice team left several weeks ago).

The team relate to patients almost entirely on a pathology level: each one comes in and asks a litany of questions, usually a list of symptoms that he can endorse. In this case he doesn't endorse any of them because he's not having the long list of symptoms that usually occur.

I know this sounds like a good thing but there is a more painful insidious effect which has taken me a while to identify: in the same way a passing woman can be seen for only one thing by cat-calling construction workers or an army enlistee is only seen for one objective by a drill sergeant so we seem to be seen for only one thing, cancer symptoms.

Unlike other units we've been on caregivers don't ask us about our relationship, how long we've been together, where we're from or what we do as careers. Unlike other units they don't share pictures of their kids or tell stories about the outside world: their latest vacation, or the marathon that caused them to be late for work.

Tad has begun to get cranky and my fuse is so short I have little patience and empathy for his crankiness.

Yesterday a nurse's aid came in for the umpteenth time (all gowned up each time) and asked if he had peed in the last 7 hours! When he replied he would appreciate it if she could group her questions together so as not to interrupt him so often she turned to me "Has he urinated since 3 PM?". I hate it when people use the third person in front of someone) so I told her to ask him. She did and he simply responded "I"m not going to tell you." She walked away.

On my way out I spoke to someone from the nursing team about it explaining that we're feeling prickly, hoping to smooth any wrinkles this might have caused. She replied, "Oh is this his first round of chemo?" - enhancing my feeling of not being seen.

The next day while writing in my journal in the backyard of my suburban nest it hit me: I need someone to see all of me, or at least more of me. I need a witness to my story. More than that I need to know these caregivers understand my story so that they can make the best decisions possible (and not reproduce the mistakes others have made in the past).

If I'm feeling this way it's safe to assume Tad is too.

I immediately found a nearby church on Google maps and contacted a minister for support - (I checked to make sure they weren't a gay-bashing congregation). I called the social worker at the hospital and asked for an appointment. I then called the hospital chaplain and did the same.

"I need to talk with someone who can see me with more than a medical brain," I started each time

I shared between gulps of tears that we need to be seen, we need to be sure we have allies who "get us",  who get "the big picture". We need people who don't just use 10% of their being to relate to us but also people who are able to bring in their heart, their feelings, their touch.

Amazingly outside of these two people there are no mental health professionals available to see patients with cancer. There are two art therapy volunteers but they are not allowed in the rooms of immune-compromised patients (anyone with a blood disorder like leukemia). There is a massage therapist for $30/half hour but she is not allowed to touch patients with low platelets (most people with leukemia chemo). I offered to hold a circle of family members in the family room twice per week so that we could share our stories for more than two minutes in the tiny kitchen. The social worker told me that was a bad idea; I can attend the once per month group she facilitates.

Ironically they both recognized this is a common complaint they hear - patients not feeling seen.

They did offer Lorazepam.

Last night I couldn't fall asleep in my comfy familiar San Francisco bed for reasons that made no sense to me. My last cup of coffee had been at 3PM - a safe margin for me. I found myself wearing a bathrobe, walking in circles and praying aloud to some unknown god to heal Tad this time, to take away the leukemic cells.

This round is being presented to us as the last option.

I grabbed some relics off the altar in my hallway -- a photo of my grams, a Buddha sculpture from Tibet, a candle, an American Indian bear-tooth from a medicine man in Northern Quebec. I called in my dead friends and ancestors: Stephen Yelvington, Melanie Querre, my grandmas. And I sat down in tears in the middle of my living room to invoke and distill into one spell every drop of love I've ever received in my fifty years of life: Heal Tad. Take this away. Make it stop.

At this point in my life I know very little about anything. I sometimes wonder who I think I am to want one life spared in a world that is so full of suffering.

But I know more than ever that love heals. I hope it can heal cells across time, across distance, across lives.