Sunday, October 4, 2009

Last Week at the Lab

Last week. The lab.

The docs at UCSF who I don't plan to see again ordered a sputum test. Dr. Wendy reminded me that she's also ordered one months ago when this all began. I hadn't done it because we thought the bronchoscopy washings would be a better test of the same thing. Four weeks later the washing didn't tell us much but I never went back to the sputum test. So, after my 3 week birthday break, I focused to complete this test.

It involved tickling my lungs until I coughed up some phlegm from the deeper places and then spitting it into a sterile cup. Three cups, three days in a row, then drive it to the lab before the weekend would make it too old to use.

The lab is in a set of professional buildings that cluster around the Petaluma hospital and they all look alike. I'd been there several times, so I'd self-confidently & unthinkingly left the address at home. I couldn't find it. I wandered around for awhile and finally borrowed a phone book from the volunteers at the hospital reception desk, got the address and, eventually, there it was.

Dr. Peterson, who I am seeing again, ordered a blood test for a Galactomannan level*, so I asked if I could do that too. The only staff person who was in the lab had never heard of the test. He consulted his procedure books between phone calls and whatever else he was doing. Eventually, he called someone in another office and asked him. That person said he'd research it and call back. Did I want to wait?

It was a beautiful warm day, I was coasting on sweet birthday wishes, and I had a good book. I said I'd wait. Eventually, the lab guy found out that I'd need to get a special kit from the doctor in Berkeley. Listening, standing at the counter, I saw my sterile sputum cups sitting behind the desk rather than being in the refrigerator. When I pointed this out, the guy lazily assured me they were fine there, that he'd put it away in a minute. That was the end of my lazy warm birthday kind of a day.

It was not fine with me,
--waiting was not fine,
--not knowing that I needed a kit was not fine,
-- forgetting that I needed this test for three weeks was not fine,
--relying on someone I didn't know to take care of my test samples was not fine.
None of it was fine with me!

"I've gone to a lot of trouble to do this test and I'd like that to be in a refrigerator," I said.

He got up and put the samples in the back -- probably in the refrigerator, but who knows? The guy in the other office was going to FAX something more about the test kit. After ten minutes with no FAX, I left.

I left, ready to take charge of my life with Fred again, ready to make lists, plan ahead, make multiple commitments, stay on top of it, push for what I want and get though tasks efficiently.

I need this warm lazy birthday pleasure now and then and I love the people who gathered around me to give me such a memorable experience of it. I need to keep that available and visit it regularly. I would be an idiot to forget it in a trance of productivity.

I've never known anything like it in quality and quantity. It's like we built an island I can visit by simply turning around and taking a step to one side. It's a solid place that I've spent my life looking for through a veil of mist and fog. I've had magical moments when the mist cleared, I found a boat and, for a few hours or (once or twice) for a few days, I was able to visit. But I've never known how to recognize it from afar, where the boat is stowed and how easy it is to sail there.

As I walked through the sunshine to my car, the call of Fred and other projects were part of the warmth and pleasure of the day. I turned the key in my car and it blinked about an empty gas tank. I expect my sixties to be a decade with some physical and emotional energy. I want to spend it in service to myself and the world. It's time to refocus and take up the sprint.


*Detection of galactomannan in blood is used to diagnose invasive aspergillosis infections in humans. This is performed with monoclonal antibodies in a double-sandwich ELISA assay from Bio-Rad Laboratories was approved by the FDA in 2003 and is of moderate accuracy.

Saturday, October 3, 2009

In Sight of the End of the Blog

It's October and it feels like autumn. New month, new season. Yesterday I sat around the ole laboratory for a couple of hours and thought about Fred.

The justified fear part of me, that which has been holding out, seems satisfied for the moment. I believe that I don't have cancer, as all the western medical people say. Although, let me be precise, no one says for sure and no one knows for sure. They say the chance is small and, after a three week break to celebrate my 60th birthday, it seems that I'm ready to take my chances. I could get swine flu and die. I could find out Fred's nature is cancer and be very sad I didn't do more to take get rid of him. There could be a major earthquake tomorrow.

Fred is still with me, as strong as ever, but he's not a big mysterious death cloud. He's more like a rainy day I walk through with discomfort if I don't put on a rain coat and take my umbrella. I may still go to great trouble and some expense to get another opinion on the cancer question from a Chinese diagnostic expert that Dr. Iva knows, but I'm not making that appointment this week.

As many people with disabilities have pointed out, the drama of an able-bodied person with a sudden life-threatening diagnosis draws attention and support in the way a long term chronic illness rarely can. Sometimes that's pretty annoying. Our culture is addicted to drama and our culture of support is fractured. But sometimes it's right too. I lived with confusion and fear this summer and I needed more people to talk to me about what I was thinking and feeling. That, and writing this blog, has helped me mark out a path and keep myself at a steady sprint along that path.

As I've gotten to know Fred, he's assumed most of the aspects of a long term chronic problem. He takes a lot of focused attention; he affects my activities every day or two; he threatens me with a surgery and costs me too much money and time in medical offices. In many ways, he's like the asthma I've lived with for 30 years or so -- A related but separate problem in the same major organ. I know how to live with the trouble Fred is brings me and the path has become marked out.

-Continue to try for a diagnosis with sputum test and bronchosopy
-If no diagnosis appears, try antibiotics and anti-fungals
-Diagnose, if possible, by which treatment works.
-Monitor Fred's shape and size with X-rays.

Do any of us need a blog?