Sunday, August 30, 2009

CT Scan

Tomorrow morning I'll go in for my second CT scan. We'll get a report mid-week, and then I'll know if Fred has grown or receded in the three months since the last test. Some part of my brain is cold and shuddering. I'm afraid.

It's odd to have such a fear of bad news mixed with a non-frightening medical procedure. I'll be getting 14 times the amount of radiation than I'd have with an X-ray, but there's no pain or awareness of the radiation. I've already had the contrast chemical dropped into my blood, so I know I'm not allergic. It's nothing too hard. I'll get up, get over there and go through the paperwork, the shuffle from office to office, and the strangeness of having people I've never met take me through a process while I'm dressed in a flimsy hospital gown.

My life and death question doesn't fit into this impersonal medical world. So, I want a chorus of wailers with me. I want their voices to rise and fall in discordant cacophony then steady to a soothing it's all gonna be okay hum. I want them to alternate one state for another from the moment my alarm goes off and through several days of waiting until I get off the phone with the results of the preliminary radiologist's report. Then I want them to stop.

Thursday, August 27, 2009

What My Lungs Look Like

Fred makes its home in the right middle lobe.
That's the part the surgeon wants to cut out.

Tuesday, August 25, 2009


About the leg rash that sent me to Iva Jones initially: I'm trying a "super bandage" called Duo Derm. It comes in a 3x4 inch sheet and is a skin dressing for the treatment of leg ulcers or areas of the skin which are healing slowly. It's very expensive although you can get it on E-Bay for much cheaper. My friend Ruthanne gave me a box.

I had used one for a week, last week. It kept me from scratching and the itch seemed to go away after the first few days.

Right now the rash is about 2 x 4 inches on my leg and extends into my ankle for another 1" x 2" patch. There's three bumps under the skin on the right side of the larger area.

The skin looked much better when I first took it off, but it doesn't look so great now, 24 hours later. I haven't scratched it. Maybe it healed because I wasn't scratching for a week but the underlying internal inflammation is still there. Maybe it just wants more time.

I'm going to put another one on.

Friends, Appointments and Food

The Iva Jones' Chinese kick-out-the-virus herb seems to be working. I have less congestion, haven't had a fever since a few days before I started it, and my upper chest is not so tight. On the other hand, I've developed a rough cough that brings up phlegm from somewhere down in the chest and a nasty allergy headache above my left eye. The headache is probably my usual seasonal allergy.

Yesterday, I spent off and on the phone:
1. trying to get a referral to Berkeley Pulmonalogy at Alta Bates hospital in time to secure the appointment they were holding for me.
2. trying to push the river of the UCSF Pulmonalogy system.

I was unsuccessful at both but, today, several things happened because of all that.

My very-long-time friend, Shanti Soule, came in the morning and we went to Oliver's, a great local grocery, for supplies. Then, she cooked up a storm of delicious healthy food. She's a nutritionist and professional who cooked for many years at a cancer retreat center-- in short an expert. As she chopped, stirred and roasted, she coached me on the phone calls and listened to my tale of woe.

By the end of the day, I had two flat cake pans of chicken enchiladas (no cheese) with homemade salsa and two loaves of nutty grain burger. It's all tasty and freezable. I also learned how to use cashew butter in a sauce and that anise and lavender are easy herbs for lung health.

This morning I got my two appointments with the two pulmonalogists, both on Sept 8, and finally, finally, finally was able to talk to a nurse, Linda, at the UCSF Chest and Allergy Clinic who gave me tips to make best use of that appointment. The films from the X-Ray and CT Scan should be in Di-Com compatible format, for instance. Who would know?

I also talked to Meri Hayos who runs a Complementary and Alternative Cancer Support Group at the Women's Cancer Resource Center. She's been on vacation but it was worth waiting for the conversation. She gave me the names of two Chinese medicine cancer specialists. One of them has had success with dogs smelling for lung cancer and works in Marin County. She introduced the idea of doing consultations with some of these alternative experts, rather than signing up for a string of expensive appointments and trying to pick the absolutely perfect alternative health practitioner. She listened and, although she didn't have concrete answers to my big questions, it was a warm and fuzzy comfort.

I can hear my friend Grain, "But, what were your big questions?"
Thank you, Grain, for asking the best questions and putting your wisdom into my thoughts.

The Big Questions: How much time, money and energy should I expend on this on a day-to-day basis? When should I stop doing everything else in my life and concentrate on finding answers and healing? And, what's the balance between the western medicine and other approaches?

Grain's husband, Michael Cohen, did some research for me in the past week and got recommendations from his friend at the Harvard Medical Center too.

There's much more going on than I can talk about on the blog. And, sometimes I feel a bit exposed when I realize everything I write here can be read by anyone who wants. My energy level is staying strong. I hope the same for you.

Sunday, August 16, 2009

Still with the Fevers, Second Opinion

The daily fevers continue. Yesterday was particularly bad. I was sick from late afternoon until 3 a.m. I laid on the couch and watched "Shark Tail", a 1994 animated movie, on T.V. (Not my favorite way to spend Saturday night.) Shelley was a constant support, tucking me under a blanket, making me a bowl of melon chunks with a toothpick to eat them, and giving me lots of hugs. She's been my reality check, my arm to lean on, my provider of good food, and the voice in my ear telling me to take time to rest.

I've been frustrated by the lack of a clear diagnosis. Dr. Dilisio referred me to UCSF Pulmonary Department but his assistant told me it would take a month before they even call to set up an appointment. I bashed my head against their voice mail systems without any success.

But then Jan Santos suggested I find a pulmonologist in the greater bay area. Her kind voice in my ear cleared the fog of the magical teaching institution. Of course, there are many specialists in this area. How can I find one that can help me? Again, Jan had an easy and practical idea, post a request to "Berkeley Disabled." That's a large and varied long-time e-group of people with disabilities and, of course, many of them have years of lung involvement. Someone who lives with a ventilator would surely have searched and auditioned pulmonologists to find a good one.

And, sure enough, within 2 days of the request, I have 5-6 recommendations.

I need to remember that the times I feel stuck and my head is sore from bashing against some institutional or other kind of wall, that this is a temporary state. If I keep working on it, keep talking to people, keep trying, these walls will dissolve and I'll find what I need. Eventually, I'll find out what is going on with these lungs, the true nature of Fred, and then I'll deal with the truth of what is.

Tuesday, August 11, 2009

Timeline of Fred plus Tests*

12-8 LAB test, Blood: high sensitivity CRP, cholesterol, HDL, high sensitivity TSH

1-16 LAB test, Blood: Giardia antigen, ova and parasites
4-01 LAB test, Blood: CBC with Differential, Vit. D, 25-Hydroxy, LCMSMS
Early-Mid May - Two bouts of fever syndrome, three days after it went away.
Mid-Late May - Shelley and I went to Dr. Wendy and we decided a CT scan was in order
5-20 LAB test, Blood: calcium serum, basic metabolic, repeat CBC with Differential
6- 2: CT Scan
6-8 LAB test, Blood?: cytology, CEA
6-9 Bronchoscopy, Dr LaKander (sp?)
6-12 LAB test, Blood; HIV
7-16 First visit with local pulmonalogist, James DiLisio
7-29 first visit with a surgeon, Dr. Kanaan
7-29 LAB test, Blood, aspergillosis, IGE, Lyme

9-8 Two appointments with pulmonary specialists on the same day, a morning appointment with Alta Bates Hospital pulmonalogist, Dr. Glen Petersen and, in the afternoon, a chest clinic consult at UCSF medical center with Dr. Zutler (supervised by Dr David Claman).

*as I look at my files on 6-11-09, missing some of the chronology

Exacerbation Rumination

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.


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.

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.

At this point the continuum of my fear goes

virus cured by one icky week of chinese herbs
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.

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.

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.

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?
It’s not likely but it’s not ruled out. Diagnosis comes from many markers.
  • CEA blood test: Carcinoembryonic Antigen —normal for non-smoker: “3” Mine: “10” Very sick with colon cancer patient: “800”
This may be something but it’s not high enough to tell us much. It’s neither here nor there.
  • IGE test. Slightly positive What does this mean?
Allergy – mild. But he couldn’t find the results. He was speaking very hastily.
  • Other blood test results all negative: that’s good, right?
We didn’t get to this question. He was very rushed.
  • 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?
He was too rushed to hear this, but started our five minutes by saying candida does not figure into the problem as he sees it.
  • 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.
October 2009
  • What kind of drug routine would I have pre and post surgery?
We never got to this question.

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)