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?
Showing posts with label bronchoscopy. Show all posts
Showing posts with label bronchoscopy. Show all posts
Saturday, October 3, 2009
Friday, September 11, 2009
Two Cities, Three Pulmonalogists-----------------------------------------------No Capital A Answer (2)
We left Dr. Peterson, ran into a friend in the lobby of Alta Bates; heard that the bay bridge had reopened after an extended weekend when it was closed for upgrades; went out for coffee to celebrate; ran into another friend... and felt great synchronicity and joy.
Then we drove over a still nearly-empty bridge for an consultation at the Chest Clinic at UC Medical Center. We arrived at the front desk at 2 pm and didn't leave the building 5:30. I lost my focus pretty completely as the institutional trance set in. By the time we left, any useful incidental comments and information had passed down the memory hole and have yet to be retrieved. I managed three sentences of notes.
Still--we saw a resident, Dr. Zutler, and then he brought in the faculty guy, Dr. David Clamen. I liked them both, Clamen especially.
They seemed to settle on a theory that Fred is most likely a long-term infection. They talked about hitting it with an antibiotic to see if that would make a difference, then repeating the bronchoscopy. But, when I pressed them on when -- and what-- they might learn from a repeat bronchoscopy, they stepped back into a let's take it one step at a time... get the results and then decide... stance.
Then they talked about another diagnostic test and decided to try that before the antibiotic. If we knew it was a fungus or virus there's no point in antibiotics, right? Right. So they ordered a sputum test where I cough up gunk from my lungs and collect it for three days in a row. Then it goes out to a lab where it takes 2-3 weeks for preliminary analysis and 5-6 weeks for conclusions on the fungal cultures.
I started the sputum test the next day but I'm not coughing deeply enough, not bringing up enough crud, to make it worthwhile. When I went to my appointment with Dr. Iva on Thursday, she suggested taking the mucous thinners that Dr. Peterson prescribed first. If I start coughing up something, then I can do the sputum test. That idea was worth everything I paid Dr. Iva that day, if only because it relieved my anxiety about not being able to do the test as I'd promised.
Before I left UC Med. I got a blood test which, I think, is in preparation for the bronchoscopy. I'm going on an off-hand comment that institutional tranced-out Adrienne didn't try to clarify. Maybe Shelley will remember some other useful details of the afternoon that I can post later. I can't remember if I asked directly about cancer. Surely I did. Surely they brushed the idea aside as unlikely.
They told me to come back in a month and I set it up without making the internal commitment to actually go. I did get the direct phone number of the nurse who, potentially, can reach the doctors with a phone call. And, I know these two docs come to this clinic once a week on Tuesday afternoon. These are very valuable bits of information if I continue as their patient.
Shelley said the day was basically about interviewing a couple of pulmonologists. If we hadn't seen four old friends in planned and unplanned encounters, Wednesday's fatigue might have unhinged me. But I managed a pretty good imitation of a pip pip cheerio, have a good attitude, stiff upper lip, take the next step, get on with it state of mind.
Then we drove over a still nearly-empty bridge for an consultation at the Chest Clinic at UC Medical Center. We arrived at the front desk at 2 pm and didn't leave the building 5:30. I lost my focus pretty completely as the institutional trance set in. By the time we left, any useful incidental comments and information had passed down the memory hole and have yet to be retrieved. I managed three sentences of notes.
Still--we saw a resident, Dr. Zutler, and then he brought in the faculty guy, Dr. David Clamen. I liked them both, Clamen especially.
They seemed to settle on a theory that Fred is most likely a long-term infection. They talked about hitting it with an antibiotic to see if that would make a difference, then repeating the bronchoscopy. But, when I pressed them on when -- and what-- they might learn from a repeat bronchoscopy, they stepped back into a let's take it one step at a time... get the results and then decide... stance.
Then they talked about another diagnostic test and decided to try that before the antibiotic. If we knew it was a fungus or virus there's no point in antibiotics, right? Right. So they ordered a sputum test where I cough up gunk from my lungs and collect it for three days in a row. Then it goes out to a lab where it takes 2-3 weeks for preliminary analysis and 5-6 weeks for conclusions on the fungal cultures.
I started the sputum test the next day but I'm not coughing deeply enough, not bringing up enough crud, to make it worthwhile. When I went to my appointment with Dr. Iva on Thursday, she suggested taking the mucous thinners that Dr. Peterson prescribed first. If I start coughing up something, then I can do the sputum test. That idea was worth everything I paid Dr. Iva that day, if only because it relieved my anxiety about not being able to do the test as I'd promised.
Before I left UC Med. I got a blood test which, I think, is in preparation for the bronchoscopy. I'm going on an off-hand comment that institutional tranced-out Adrienne didn't try to clarify. Maybe Shelley will remember some other useful details of the afternoon that I can post later. I can't remember if I asked directly about cancer. Surely I did. Surely they brushed the idea aside as unlikely.
They told me to come back in a month and I set it up without making the internal commitment to actually go. I did get the direct phone number of the nurse who, potentially, can reach the doctors with a phone call. And, I know these two docs come to this clinic once a week on Tuesday afternoon. These are very valuable bits of information if I continue as their patient.
Shelley said the day was basically about interviewing a couple of pulmonologists. If we hadn't seen four old friends in planned and unplanned encounters, Wednesday's fatigue might have unhinged me. But I managed a pretty good imitation of a pip pip cheerio, have a good attitude, stiff upper lip, take the next step, get on with it state of mind.
Subscribe to:
Comments (Atom)
