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.

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.

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.