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.

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*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.

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?

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.

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.

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.

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)

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.