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.
Sunday, August 30, 2009
Thursday, August 27, 2009
Tuesday, August 25, 2009
Rash
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.
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.
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.
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*
2008
12-8 LAB test, Blood: high sensitivity CRP, cholesterol, HDL, high sensitivity TSH
2009
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
12-8 LAB test, Blood: high sensitivity CRP, cholesterol, HDL, high sensitivity TSH
2009
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.
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.
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.
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