Oh, I love that title. Love the way it rolls off my tongue.
I love the idea of ruminating in words, but can't do it now.
My shoulder hurts from the computer work I've already
done today.
I've been having fevers again. Three in the last 5 days.
Last night I was changing into clean pants to go to square
dance club and sat down on the side of my bed with one pair
of jeans half off, realizing I was too weak to go. Shelley hugged
me and diagnosed the fever. It hovers around 100 degrees,
so no immediate crisis, but another evening spent in my chair
instead of in the dance hall. More asthma, less lung space.
Concern.
Now, rather than ruminate, chew my cud and fall into the
world of emotional exploration, I'm going to do some dishes,
eat lunch and check on a doctor appointment.
Tuesday, August 11, 2009
What's Going On? Fred? (3)
I have been seeing a local acupuncturist, Iva Jones, since last fall/winter. I began because I had a rash on my right ankle that I hadn't been able to heal. It's gone on for at least two years and it's a shameful area of my life. There's some kind of inflammation internally that breaks down that skin, but it itches and when I scratch it, it gets worse. I've resisted using a lot of steroid cremes on it but I do it occasionally and then beat myself up emotionally for not controlling my fingernails. Iva thought she could help the rash and gave me a break on the fee. signed up for 4-5 treatments.
Very quickly, she told me that I had some major problems, imbalances I guess she would say, and that, while I was feeling pretty good on a daily basis, I should not ignore the underlying issues. I had another problem, one I've already had three surgeries for, growing polyps in my sinus cavities. She didn't think she could stop this reoccurring drama without a lot of time and work because it has gone on for decades at this point. Among other things, it is due to too much damp in my system.
(I'm having a hard time talking about this because I don't understand Chinese medicine and the terms)
She wrote a treatment plan which included some major diet changes, Chinese herbs twice a day and regular acupuncture treatments. Gradually, I've adopted most of her plan.
I eliminated all sugars from my diet except agave nectar and fruit which took months and challenged some habits that go back to childhood. As I write this, I'm having a great craving for a chocolate bar. I also cut out milk and cheese although I still eat yogurt.
I take four kinds of Chinese herbs and mushrooms. An herbal formula she wrote works with Cordyceps mushrooms to sooth and heal the underlying causes of asthma. Reishi mushrooms do something else I forget and another formula she wrote, and varies occasionally, bolsters my underlying system. The mushroom are capsules--five a day. The formulas are powdered herbs I dissolve in hot water twice a day.
I get acupuncture once a week. Our conversation before the treatment helps keep my symptoms and the weekly western information clearer in my mind.
Last week, she suggested the possibility that these fevers are due to a virus, perhaps one that has no connection with the lung inflammation we see on the CT Scan. She sent away for a specific herb that should wipe that virus out, if it is the cause. It means a week drinking a dose of this nasty stuff three times a day. We're trying it out before the next CT scan, just in case. It would be amazing, and is not impossible, that the fever, and the weird CT finding is due to an odd virus.
Very quickly, she told me that I had some major problems, imbalances I guess she would say, and that, while I was feeling pretty good on a daily basis, I should not ignore the underlying issues. I had another problem, one I've already had three surgeries for, growing polyps in my sinus cavities. She didn't think she could stop this reoccurring drama without a lot of time and work because it has gone on for decades at this point. Among other things, it is due to too much damp in my system.
(I'm having a hard time talking about this because I don't understand Chinese medicine and the terms)
She wrote a treatment plan which included some major diet changes, Chinese herbs twice a day and regular acupuncture treatments. Gradually, I've adopted most of her plan.
I eliminated all sugars from my diet except agave nectar and fruit which took months and challenged some habits that go back to childhood. As I write this, I'm having a great craving for a chocolate bar. I also cut out milk and cheese although I still eat yogurt.
I take four kinds of Chinese herbs and mushrooms. An herbal formula she wrote works with Cordyceps mushrooms to sooth and heal the underlying causes of asthma. Reishi mushrooms do something else I forget and another formula she wrote, and varies occasionally, bolsters my underlying system. The mushroom are capsules--five a day. The formulas are powdered herbs I dissolve in hot water twice a day.
I get acupuncture once a week. Our conversation before the treatment helps keep my symptoms and the weekly western information clearer in my mind.
Last week, she suggested the possibility that these fevers are due to a virus, perhaps one that has no connection with the lung inflammation we see on the CT Scan. She sent away for a specific herb that should wipe that virus out, if it is the cause. It means a week drinking a dose of this nasty stuff three times a day. We're trying it out before the next CT scan, just in case. It would be amazing, and is not impossible, that the fever, and the weird CT finding is due to an odd virus.
At this point the continuum of my fear goes
from
virus cured by one icky week of chinese herbs
to
cancer that's spread to my lymph system
and will kill me sometime this year.
from
virus cured by one icky week of chinese herbs
to
cancer that's spread to my lymph system
and will kill me sometime this year.
What's Going On? Fred? (2)
As the fevers steadily increased in frequency, Shelley and I went to visit my primary care doctor, Dr. Wendy. She agreed that there was something to be concerned about.
I should talk about my lymph system before I go much further. My neck gets sore. I remember swollen glands that came and went in conjunction with the original fevers. When I got sick, my neck hurt. I had a fever. I got antibiotics. I felt better. No more fever, no more tender swollen neck.
But, maybe it never entirely went away. Even before we were worried about the fevers coming more quickly, I went to see Dr. Stephanie Huang, a specialist in the Santa Rosa Head and Neck Surgical Group. She did a great, although painful, exam and ordered a CT (cat) scan of my neck. The results of that were 'watch, don't do.' Dr Huang explained that there was nothing alarming on the scan. That any questionable lymph nodes were too small to even stick a needle into for a biopsy.
She thought I might have some blocked sweat glands and put me on a routine of 16 glasses of water a day. This has helped but, not cured, the soreness.
In the meantime, Dr. Wendy ordered a CT (cat) scan of my lungs.
That was alarming! It showed a density, a contour. . . something that shouldn't be there in the right middle lobe of my lung.
We got the news on Friday and Dr. Wendy worked fast. She arranged a bronchosope for the next Tuesday. Dr. LaKander fit me in even though this is not something he usually does. And Palm Drive, Sebastopol's local hospital, allowed it. It was a frightening time but I was held in the arms of the health net of Western Sonoma County-- more than I could take in at the time.
Basically, the doctor stuck a camera with a set of pinchers down my throat into the bronchial tubes that go into the lungs.
The result of the bronchoscope was good news. The doctor didn't see a tumor or anything else to biopsy. He did "washings" of the area and sent everything out for testing and cultures. As the results came in, again, good news. Specifically, the cytology, which is a test for cancer, was negative. The other tests also were not alarming.
As I've come to understand, nothing is really definitive. I could have a cancer tumor outside the bronchial tube which the camera didn't see. I could have the aspergillosis fungus despite the culture from the washing and a separate blood test coming up negative for it. I could have some kind of chronic inflammation in that lobe and, well, is there any test for this? I sure don't know.
I'm calling the problem "Fred." Why? Because I need to have a way to refer to it. Something not too frightening, something different than me. Something that doesn't remind me of any guy I know. Something that feels friendly.
I should talk about my lymph system before I go much further. My neck gets sore. I remember swollen glands that came and went in conjunction with the original fevers. When I got sick, my neck hurt. I had a fever. I got antibiotics. I felt better. No more fever, no more tender swollen neck.
But, maybe it never entirely went away. Even before we were worried about the fevers coming more quickly, I went to see Dr. Stephanie Huang, a specialist in the Santa Rosa Head and Neck Surgical Group. She did a great, although painful, exam and ordered a CT (cat) scan of my neck. The results of that were 'watch, don't do.' Dr Huang explained that there was nothing alarming on the scan. That any questionable lymph nodes were too small to even stick a needle into for a biopsy.
She thought I might have some blocked sweat glands and put me on a routine of 16 glasses of water a day. This has helped but, not cured, the soreness.
In the meantime, Dr. Wendy ordered a CT (cat) scan of my lungs.
That was alarming! It showed a density, a contour. . . something that shouldn't be there in the right middle lobe of my lung.
We got the news on Friday and Dr. Wendy worked fast. She arranged a bronchosope for the next Tuesday. Dr. LaKander fit me in even though this is not something he usually does. And Palm Drive, Sebastopol's local hospital, allowed it. It was a frightening time but I was held in the arms of the health net of Western Sonoma County-- more than I could take in at the time.
Basically, the doctor stuck a camera with a set of pinchers down my throat into the bronchial tubes that go into the lungs.
The result of the bronchoscope was good news. The doctor didn't see a tumor or anything else to biopsy. He did "washings" of the area and sent everything out for testing and cultures. As the results came in, again, good news. Specifically, the cytology, which is a test for cancer, was negative. The other tests also were not alarming.
As I've come to understand, nothing is really definitive. I could have a cancer tumor outside the bronchial tube which the camera didn't see. I could have the aspergillosis fungus despite the culture from the washing and a separate blood test coming up negative for it. I could have some kind of chronic inflammation in that lobe and, well, is there any test for this? I sure don't know.
I'm calling the problem "Fred." Why? Because I need to have a way to refer to it. Something not too frightening, something different than me. Something that doesn't remind me of any guy I know. Something that feels friendly.
Monday, August 10, 2009
Next CT Scan?
The surgeon wanted to do it immediately.
Dr. Dilisio says in October.
Dr. Wendy suggests 3 months after the original one (June 2) which would be the first week of September. She wants to be very sure that what we are seeing is not inflammation from the bronchosope.
In the meantime, off to UCSF for a 2nd opinion.
My asthma is definately up and I've had two fevers in the past four days.
Dr. Dilisio says in October.
Dr. Wendy suggests 3 months after the original one (June 2) which would be the first week of September. She wants to be very sure that what we are seeing is not inflammation from the bronchosope.
In the meantime, off to UCSF for a 2nd opinion.
My asthma is definately up and I've had two fevers in the past four days.
Wednesday, August 5, 2009
2nd Opinion. Women's Cancer Resource Center (1)
Dr DiLisio wants to send me to UCSF to the pulmonary department there. That's fine because I wanted a 2nd opinion.
(What was not fine was the way he treated me today. I'll talk to Dr. Wendy about it tomorrow to be sure I don't mess up some medical record keeping, referral process-- but I would be very happy to never have to see or hear from him again.)
I called the Women's Cancer Resource Center in Oakland today.
What a difference!
They will help me. I can call any time and, during business hours, can reach someone to talk to. LaTasha, who answered the phone today, offered to do some basic research on lung cancer and resources in Sonoma County and mail me what she finds. Then, she called me back to tell me about a medical library at Memorial hospital in Santa Rosa.
The Sonoma County library called to say two of the books I ordered on lung disease and lung cancer have arrived.
So-- the low income rural health clinic where Doctor Wendy works, Women's Cancer Resource Center and the local library! Blessings and praise to them! Your tax dollars at work and a feminist networking non-profit which is part of the community I helped build.
I would be so scared and alone without them.
It would be easy to make a major decision and have it go very wrong.
(What was not fine was the way he treated me today. I'll talk to Dr. Wendy about it tomorrow to be sure I don't mess up some medical record keeping, referral process-- but I would be very happy to never have to see or hear from him again.)
I called the Women's Cancer Resource Center in Oakland today.
What a difference!
They will help me. I can call any time and, during business hours, can reach someone to talk to. LaTasha, who answered the phone today, offered to do some basic research on lung cancer and resources in Sonoma County and mail me what she finds. Then, she called me back to tell me about a medical library at Memorial hospital in Santa Rosa.
The Sonoma County library called to say two of the books I ordered on lung disease and lung cancer have arrived.
So-- the low income rural health clinic where Doctor Wendy works, Women's Cancer Resource Center and the local library! Blessings and praise to them! Your tax dollars at work and a feminist networking non-profit which is part of the community I helped build.
I would be so scared and alone without them.
It would be easy to make a major decision and have it go very wrong.
Tuesday, August 4, 2009
Medical Questions & Non-Answers This Week
Dr. Wendy talked to me last night on the phone and we went over the questions and tests. Dr. Dilisio was supposed to call yesterday but he didn't. He called today. His answers are in italics.
- Aspergillosis— is it now ruled out due to both bronchoscope cultures and blood test? Or, does it take longer to grow?
- CEA blood test: Carcinoembryonic Antigen —normal for non-smoker: “3” Mine: “10” Very sick with colon cancer patient: “800”
- IGE test. Slightly positive What does this mean?
- Other blood test results all negative: that’s good, right?
- Bronchoscope cultures showed candida. Could that be from the esophagus as the instruments came through on their way out? I know I had candida there. I took two diflucan pills, a week apart. Is that likely to have taken care of it, if it is in middle lobe?
- When is the best time to repeat the CT scan? I want to repeat it when there is a chance to see some positive changes if this whole mess is due to inflammation or fungis.
- What kind of drug routine would I have pre and post surgery?
Saturday, August 1, 2009
What's Going On? Fred? (1)
Here's where I attempt to give some perspective for myself and hopefully for my friends on why this blog is happening.
A long time ago. Two years? Two and a half years? Earlier? I got a fever that didn't go away. I got very sick and my doc and my beloved, Shelley, said that it was way too scary for someone who had already had pneumonia more than once. Antibiotics kicked it. Three to six months later, it returned.
It seemed to be related to deadlines and trips. I was very busy in those days with Free Speech Radio News. I'd finish a deadline or return from a trip and suddenly I couldn't do anything for a couple of weeks. Eventually, I gave in to Shelley's observation and good sense. I agreed to take antibiotics when the fever first started, rather than wait 5-7 days.
It was a funny fever. It appeared late in the afternoon or early evening. I often got chills as well as the usual aches and heat. I think it went fairly high in those years, up to 102 or so. It usually broke with a sweat in the middle of the night and rarely appeared in the morning. After a few days, I'd get a lot of additional congestion and asthma.
The thing is, it started to come around more often. From 2-3 times a year, it went to 3-4 times a year.
I did not like having to take so many antibiotics. I've been allergic to penicillin since I was a child. And now, my stomach can't handle some of the other antibiotics. I was starting to worry about getting old and not being able to tolerate any kind of antibiotic. Plus...I had the usual fears of those of us who don't want to treat symptoms only and worry about too many western drugs in our bodies.
You'd think I would be over that with all the drugs I've taken, but not so, not so. Some days it seems more crucial than ever.
Last winter, something changed. The fever stayed low, for one thing. Never higher than 101. I didn't take antibiotics for it one time when it came knocking and I didn't get worse, didn't get pneumonia. After a week of feverish afternoons and evenings, I had a good day, then a couple of good days in a row and then the fever never returned.
Except it did. It returned and left and then it returned only three weeks after it left. Finally, this spring, it returned, left and showed up again the next week. (to be continued)
A long time ago. Two years? Two and a half years? Earlier? I got a fever that didn't go away. I got very sick and my doc and my beloved, Shelley, said that it was way too scary for someone who had already had pneumonia more than once. Antibiotics kicked it. Three to six months later, it returned.
It seemed to be related to deadlines and trips. I was very busy in those days with Free Speech Radio News. I'd finish a deadline or return from a trip and suddenly I couldn't do anything for a couple of weeks. Eventually, I gave in to Shelley's observation and good sense. I agreed to take antibiotics when the fever first started, rather than wait 5-7 days.
It was a funny fever. It appeared late in the afternoon or early evening. I often got chills as well as the usual aches and heat. I think it went fairly high in those years, up to 102 or so. It usually broke with a sweat in the middle of the night and rarely appeared in the morning. After a few days, I'd get a lot of additional congestion and asthma.
The thing is, it started to come around more often. From 2-3 times a year, it went to 3-4 times a year.
I did not like having to take so many antibiotics. I've been allergic to penicillin since I was a child. And now, my stomach can't handle some of the other antibiotics. I was starting to worry about getting old and not being able to tolerate any kind of antibiotic. Plus...I had the usual fears of those of us who don't want to treat symptoms only and worry about too many western drugs in our bodies.
You'd think I would be over that with all the drugs I've taken, but not so, not so. Some days it seems more crucial than ever.
Last winter, something changed. The fever stayed low, for one thing. Never higher than 101. I didn't take antibiotics for it one time when it came knocking and I didn't get worse, didn't get pneumonia. After a week of feverish afternoons and evenings, I had a good day, then a couple of good days in a row and then the fever never returned.
Except it did. It returned and left and then it returned only three weeks after it left. Finally, this spring, it returned, left and showed up again the next week. (to be continued)
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