Tuesday, August 16, 2011

los angeles

Early into this adventure we were told by the very first oncologist that we would have to choose either Stanford or UCSF as a follow-up hospital since only they could perform the lifesaving transplant Tad will need once he is in remission.

Thus we moved to UCSF where after a few months we discovered they would not be able to transplant Tad. He has a complication that means his transplant must be done within an experimental protocol.

Suddenly we found ourselves searching for hospitals with that particular protocol.

We called many of the major cancer centers in America. Our team at UCSF tried others. Only one cancer center in the US was willing to transplant Tad: Seattle.

That is why we agreed to go up there at the end of June in order to meet with the team and discuss how to make that happen. We found ourselves living the most surreal of realities when the morning of our meeting Tad told me we needed to call 911. He ended up being rushed to the very hospital that may be able to save his life - and then spent 16 days there.

But while we were there we also discovered some of the downsides to being at that hospital: Tad would have to establish fiscal residency in Washington. He would have to transfer his Medicare to Washington at the risk of going through a period of transition without insurance. The other risk would be losing his home in Santa Cruz - the most stable anchor in his world.

So it was with some relief that one of the oncologists at Stanford informed us that City of Hope Cancer Center in the northeast part of greater Los Angeles has two patients with the same medical history as Tad and are interested in conducting the protocol.

This afternoon they called Tad to set an appointment for an intake!

This is immense news for us. Tad's insurance would not have to be toyed with, because we would still be in California. LA is much closer to his blood family in Arizona than chilly Seattle. And the cost of living there is lower - an important point since it will no doubt be a six month stay for both of us.

It's a strange thing to be given this news at a time when everyone is in "wait and see" mode.

The doctors, the nurses all come into Tad's hospital room and we talk about the day's aches and pains. We discuss the swelling in his ankles, his appetite and the present pain regimen. Vital signs are analyzed and everyone agrees he's doing quite well.

What we don't talk about is the fact that a body can only take so many rounds of chemo; the fact that Tad's leukemia may just come back after all this pain.

More than anything I want these people to tell me my future, to tell us our future with absolute certainty. That is the one thing they cannot do. They can only tell us the next step to take.

The discomfort of that is palpable.

This morning -- before the phone call -- I arrived in Tad's room, sat down on the bed, took his hand and without words simply wept. He saw my face screw up and began to weep too. Together we sat in gentle silence holding hands and crying while looking into one another's eyes.

Sometimes our sorrow is so big it can't be kept at arm's length any longer.

When we were done we wiped our faces in silence, declared our love for one another and had a great lunch of real, all-American hamburgers and potato salad followed by a rich Mexican flan.

Hamburger, flan, love and tears. What more could I possibly need?












No comments:

Post a Comment