Saturday, December 12, 2009

Good Bye For Now

I've been trying to figure out endings for most of my life.

I'm not a person who breaks up with girlfriends, leaves jobs or even says good bye to a geographic locale. Many of my major life decisions were motivated by some combination of beautiful vision, peer behavior and desperation.

But I'm getting better at it. I sometimes almost know that the time has come to close a chapter and open something new. And this is one of them.

Here's the medical update: I got another X-Ray and went to the pulmonologist, Doc Peterson. I got another CAT scan and talked to Dr. Wendy.

Fred is no better and no worse. Doc Peterson said that this is evidence for his theory that Fred is a collapsed lung lobe. In this theory Fred began when my right middle lobe lost its air vacuum at some point and the walls of the lobe got stuck together by the juices that live in the lungs. It has never re-inflated. The doc says I could live my life in this condition and it might be just fine. He doesn't see evidence for a more active intervention - which have their own danger and side effects. I have to keep watching it because I'm more at risk for big-time infections and over-growths of fungus with a collapsed lobe.

I also did more lab tests, both blood and poop. They all look good except the eosinophil count. Normal is around 500 and mine are 1100. Eosinophils are one of five major white blood cells, the kind of cell that fights disease. This probably means there's an undiagnosed infection somewhere which my body has rallied to fight.

So, here I am, a good six months since I got very serious about getting a diagnosis for fevers, lung density, and a high eosinophil count. The fevers are basically gone. It's possible the lung problem is just another physical problem I can manage like my asthma. And, I'm not very interested in more tests and doctor visits.

So, while I'd like to write you about surfactants and their role in the lungs, I'm going to restrain myself. I'm not going to take this blog down but I'm ending these regular updates for... awhile. I'm making an ending and leaving this option open.

Thank you for reading.

It changed my life to be this open about my life and have so many people respond with affection and love. Who knows? Maybe it was just that which pushed the fevers away. Thank you.

What's Going On, Fred? (4)

It's a good six months since I got very serious about getting a diagnosis for fevers, lung density, and a high eosinophil count.

The fevers are basically gone.
It's possible the lung problem is just another physical problem I can manage like my asthma.
The eosinophil count is still over the top.

I'm wanting to cut out most of the tests and doctor visits.
I'm putting this blog on hold and turning my energy to other things.

It changed my life to be this open about my life and have so many people respond with affection and love. Thank you.

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?

Sunday, September 27, 2009

The Rash is Better

I haven't written an update for over a week nor have I had anything much to do with doctors or health routines. Instead, I've celebrated my sixtieth birthday in high and fabulous style. Tomorrow I have an appointment with my primary care doctor, Dr. Wendy. I hope she will help me refocus and head into a renewed relationship with Fred.

In the meantime, there's the rash and some good news with that. I'm being able to wear the Duo Derm dressing/bandage on my leg rash for ten days or so at a time. It keeps me from scratching -- which is very good for my leg.

When I took off the last one a week ago, the area of rash had shrunk considerably, and the red bump spots were either gone or much smaller. In the past, the skin where the rash lives had become rough and thick, and it looked dry. Now, most of it was the same texture as the rest of my skin.

I wanted Iva, my acupuncturist, to see the improvement so I decided to leave the dressing off for a couple of days. Because it wasn't itching, I continued to leave it free after I saw Iva. Yesterday, after almost a week of no itching, the urge to scratch returned with a vengance and I put a new bandage on.

Iva says that there are many specialized bandages on the market; she gets many ads for them. But she doesn't get samples and hasn't been able to tell which ones might work in particular situations. The Duo Derm packets used to be available on ebay for pretty cheap but they don't seem cheap right now. Hopefully, I'll get the rash healed before I run out.

I'm excited because it seems the bandage is not only helping me control that horrible fingernail action. It also seems to be helping the skin heal so that it can resist whatever internal mechanism causes the itch in the first place.

Tuesday, September 15, 2009

Shower Head Bacteria

This is something I'm NOT worried about because I have a metal shower head and I never put my face into the first blast. I put it here because it lists some possible lung bacteria.

Showering may be bad for your health, say US scientists.
In fifty shower heads, 30% had levels of Mycobacterium avium 100 times higher than those found in typical household water supplies.

M. avium forms a biofilm that clings to the inside of the shower head and those who get a face full of water when they turn on the shower, can inhale the bacteria suspended in water droplets into the deepest part of the lungs. Showers are also linked with a type of pneumonia called Legionnaires' disease and chest infections with a bacterium called Pseudomonas aeruginosa.
Some of these bacteria belong to the same family as TB. Metal shower heads are less likely to be infectious. Those with weakened immune systems, like the elderly, pregnant women or those who are fighting off other diseases, can be susceptible to infection.

--Report from the National Academy of Science and University of Colorado at Boulder, lead researcher, Norman Pace, forwarded from a friend who saw a BBC news article.

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.

Wednesday, September 9, 2009

Two Cities, Three Pulmonalogists -------------------- No capital "A" Answers (1)

Yesterday, Shelley and I went to Dr. Glen Peterson at Alta Bates Hospital in Berkeley. I briefed him on my history and the trouble of the last six months.

He looked at LAB test results and radiology reports. Then, he looked at and compared the two CT Scans as we watched and he gave us a lot of information about what we were seeing. He did the same with my August x-ray, comparing it with one done in 2005. Fred smiles for the camera in an x-ray almost as well as in the CT. so we can do the next follow-ups with x-rays. There's a lot less radiation in an x-ray so I'm happy about this.

Fred seems to have grown, but not greatly. He thinks Fred is atelectasis, which simply means that part of the lungs are not inflated and begs the question of what is causing this collapse.

I asked him if Fred could be caused by a cancer tumor pushing into one of the major bronchial tubes, obstructing the easy flow of air. He said it was possible but not very likely, that other scenarios offer more probable explanations. He said we couldn't rule out cancer but it's a minor eventuality.

Then he gave us a visual image. Think of an accordion, he said, which is compressed and collapsed with very little air inside. This is your lungs when you breathe out. Imagine that something sticky, like partly-dried mucous, is inside the folds of the accordion when it is folded together. Then, you breathe in. Part of the accordion opens but other segments of it are stuck together with mucous. Maybe some of these folded sections open a bit, others don't open at all. The air does not get into those areas and when the scanner takes a picture of it, that area shows up as a feathery white cloud. This is Fred.

He did a very thorough physical exam and gave me prescriptions for a mucous thinner, guaifenesin, the ingredient in cough syrup that helps you cough up mucous. If there is no change when I see him again in 4-6 weeks, he'll likely try another, more-targeted bronchoscopy to get more samples and perhaps some better visual information.

I'm not sure whether he talked about a long needle into the right middle lobe of my lung in the context of doing a biopsy or as a way to re-inflate the lung. But he said we wouldn't take that option lightly because the entire lung could collapse. If that happened, I'd have to be hospitalized and/or it could lead to a serious infection.

He spent an hour with me and only became time-anxious toward the end. He was smart and very present in the room, asked me good questions and treated us respectfully.

(To be Continued)

Monday, September 7, 2009

Doctors and Hospitals

I'm in the slow time between western medical events. The 3-month follow-up CT Scan was inconclusive. Tomorrow, I consult with two different pulmonalogists and I've been gathering a file of all my lab and other test results to take to each of them. I continue to feel very good, emotionally and physically. As always, I've had many thoughts and feelings about Fred.

I have a long-distance teenage friend named Jessica. Eleven years ago, she was diagnosed with the progressive disease, Niemann Pick Type C. Four years ago, after a series of seizures, she lost a lot of mobility and her ability to speak. She has been hospitalized twice since August 10. Her dad keeps a web-based journal and I wanted to share a couple of his entries about doctors and hospitals.

September 4
"All [hospital] admits are tedious, with the same questions being asked a number of times, usually by doctors and nurses who are seeing Jessica for the first time. The challenge is to answer all the questions patiently and completely, establishing credibility as a parent but not encroaching on the doctor being "the boss." You lose ground if territorial boundaries have to be drawn. It is also clear that all (doctors, nurses, therapists and caregivers) are like (master) chefs. They are usually very good and each has their own way of doing things. They cook with their own twists on recipes and techniques. We like to think that we have established a hybrid of what works best for Jess, when we get her home and have to deliver her care under our own roof. After settling in, Jess had a good night. . . "

September 7
". . . we are still scheduled for the PICC line tomorrow and we are discerning whether we want to have a new G-J tube put in at the same time. The doctors feel it will give Jess a better chance to avoid pneumonia. Since it is different, and new to us, it is a challenge to separate the zeal of those encouraging it from the considerations of its implications. We are looking to get a consult with the Doctor who knows Jessica best, her GI doctor from UCLA. The 3 day Holiday weekend seems to be a stumbling block to that end.

Today, while we continue our most important job as parents, we will also have to don a bright red or yellow reflective vest and play traffic cop, trying to stay off of “double secret probation” for visiting violations, while managing the comings and goings of caregivers, therapists and visitors who would like to say hello to their favorite patient. Remember only 2 people per room, unless it is convenient for that moment for the doctor to be able to speak with mom or dad while 2 caregivers feverishly tend to the moment to moment needs of Jessica. If I sound bitter--"

Jessica has had many hospitalizations and her family provides and coordinates 24 hour care-taking when she is at home. "Care-taking" is a euphemism. They keep Jess alive with constant attention and procedures that most of us would think could only be done in a hospital. She lives as a family and community-member in an integrated way that constantly inspires me. When Jess is in the hospital, their expert, individualized care-taking goes with her.

It makes me furious that they have to struggle to be seen as equals with medical folks, most of whom have never even met Jessica. The hospital has a new stricter visitors policy which actually makes their work with her there harder. That some administrator, and his or her managers, are enforcing it in this situation also makes me furious.

Jessica's dad says this: "... we are discerning whether we want to have a new G-J tube put in at the same time. The doctors feel it will give Jess a better chance to avoid pneumonia. Since it is different, and new to us, it is a challenge to separate the zeal of those encouraging it from the considerations of its implications."

He is talking about my challenge in considering lung surgery. I hope I get my elusive diagnosis after I see the pulmonalogists tomorrow. But, even that may not tell me definitively whether or not surgery is in my near future. The consequences of medical procedures land in a very personal individual body. Given that this body is my own, I'm very interested in it working as well as possible for as long as possible.

Friday, September 4, 2009

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?

What's the balance between the western medicine and other approaches?

How much research and study should I do?

Wednesday, September 2, 2009

What the CT Scan said

Dr. Wendy called me this morning with the report from the radiologist. After three months, my lungs are not significantly worse. Nor are they better.

She faxed me the technical notes which I'll get later today.

So, still looking for a diagnosis. She warned me yesterday that the pulmonalogists are likely to give me a lot of information and no clear answer.

It's an anti-climax. I suspect I'll have more to say about it later.

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)

Friday, July 31, 2009


The pulmonary specialist thought Fred might be aspergillosis

He ordered a blood test. I'm at risk because I have asthma. The fevers could be a symptom of aspergillosis. The Bronchoscopy washings were negative for aspergillosis and so was a follow up blood test.

Aspergillosis is a group of illnesses caused by mold. The mold that triggers the illnesses, aspergillus, includes more than 150 types of mold that occur widely in the indoor and outdoor environment. Although most of the molds are harmless, a few can cause serious illnesses in people with a weakened immune system, underlying lung disease or asthma. These illnesses, collectively called aspergillosis, range from allergic responses to severe and sometimes fatal infections.

Aspergillosis begins when susceptible people inhale mold spores into their lungs. In some people, the spores trigger an allergic reaction. Other people develop mild to serious lung infections. The most serious form of aspergillosis — invasive aspergillosis — occurs when the infection spreads to blood vessels and beyond, into the lungs to other organs.

The name of the fungus, Aspergillosis, was coined by a priest botanist, for its resemblance to the aspergillum, a brush used for sprinkling holy water in the Catholic high masses. Over 135 species have been described. A couple dozen are involved in human and animal disease.

Depending on the type of aspergillosis, treatment may involve watchful waiting, antifungal medications, steriods or, in rare cases, surgery.

Diagnosing aspergillosis can be difficult. Aspergillus is common in the environment and is sometimes found in the saliva and sputum of healthy people. What's more, it's hard to distinguish aspergillus from other molds under the microscope, and symptoms of the infection are similar to other conditions.

To arrive at an accurate diagnosis, your doctor is likely to use one or more of the following tests:

  • Imaging tests. A chest X-ray or computerized tomography (CT) scan — a type of X-ray that produces more detailed images than conventional X-rays do — can usually reveal an aspergilloma as well as characteristic signs of invasive and allergic aspergillosis.
  • Sputum stain and culture. In this test, a sample of your sputum is stained with a dye and checked for the presence of aspergillus filaments. The specimen is then placed in something that encourages the mold to grow.
  • Tissue and blood tests. Diagnosing allergic bronchopulmonary aspergillosis usually requires skin and blood tests. For the skin test, a small amount of aspergillus antigen is injected into your forearm. If you have antibodies to the mold in your bloodstream, you'll develop a hard, red bump at the injection site. Blood tests look for high levels of certain antibodies, indicating an allergic response.
  • Biopsy. Examining a sample of tissue from your lungs or sinuses under a microscope is usually necessary to confirm a diagnosis of invasive aspergillosis.
I've had all these tests except Sputum, none of them positive for the fungi, but that's still not conclusive that I don't have it. It might not be aspergillosis -- it might be cancer. Or... something else?

Thursday, July 30, 2009

What Next?

I think I'm going to drive out to Bolinas to
a cancer retreat center which has a good
library. They balance western and alternative
ideas and I need the alternative voice in
my head. I also ordered some books on
lung cancer from the library tonight

This surgeon and the pulmonary specialist
felt much too much like a railroad train taking
me somewhere I don't know. I didn't trust

That means I have to become more familiar with
this unusual place -- the country of the major
lung problem.

Wednesday, July 29, 2009

off to see the lung surgeon

My visit with the lung surgeon today was pretty horrible.
He thinks we should just cut out my right middle lobe
if the mysterious thing hasn't cleared up.

Whether it's inflammation, fungus or cancer,
it's all to the good to take out some of my lung out (in his
opinion). Which I think is ridiculous.

On the not-ridiculous side, lung cancer has a very
low survival rate and this is likely the only way to catch it
when it's too small to see on tests and hasn't spread.

Oh... but ... maybe there's no cancer in there...

Shsssssh. I'm starting to do my own research and
I will set up a 2nd opinion. In the meantime, the
fungal test #1 should be showing up with results.

I'm starting in the middle of this. If you've just joined
me, come back. I'll post more of the back story as the
days go by. The short explanation is that I had something
(a contour? a collapse, a constriction?) show up in June
in a CT scan of my lungs. We're now searching for a
diagnosis. We are deep in the woods, feeling all
poked and prodded and no clear path has emerged.