Thursday, November 29, 2012


Nostalgic vision of a lifeguard station
in Newport Beach
I decided yesterday that anyone who complains about the weather in San Francisco doesn't get out enough. (Go to New York. Go to Seattle!) On the other hand it's a bit rainy and colder here than I've been in a while. For the last two days, I've stayed up watching The Walking Dead, which I can't even recommend, and staying in bed in the morning. I hope it's a phase. I need to work on my book, which I am doing right now. I do not know how long I have to work on it.

Not unrelated, probably, to what I was pondering in my last post, I had a very strong dream last night about my first husband Michael. An influence in the dream must have been Patti Smith's memoir Just Kids, which ended with death and AIDS. Michael and I were young, in a relationship, and he found out he had AIDS. The only thing about it I really remember is crying, and begging him not to die. In non-dream life, this is not something I would do. It's more human in some way, more unrestrained.

It's funny lately how in dreams I have so much love for him, more than I ever loved him in person. What's the deal? Is it some early part of myself? Am I dropping the jadedness that came from that relationship? Am I begging myself not to die?

Tuesday, November 27, 2012

How I am now

Pondering self and scalp in The OC.
My hair is coming back but it's not
dark enough to see in photographs. 
To continue on a theme, Monday I didn't count steps, was mostly driving, but probably there were very few. Also ate some crap food (popcorn, Trader Joe's cheetos, and stuff with fake sugar in it!) Saw the excellent Argo with Jules. I arrived home this morning. 

I'm listening to the City Arts and Lectures interview with Wendell Berry. I think the interview on Forum with Michael Krasny is better.  Although the focus isn't enough on poetry. 

I was thinking about all the bad news I got in the beginning of this ordeal. Every time I went to a new doctor I got more bad news. First there's a tumor, then it's in the bladder, then it's in lymph node(s), then it's in the bones, then it's stage 2, then it's stage 4, then it's stage 4b, and there is almost no information about treatment. When I would hear new info about the extent of the disease, I'd be shocked for a few minutes, or a few hours. It would pass, and things would somehow feel "normal". 

I realized that this time it's taken me several weeks to get used to the news that the last round of chemotherapy didn't work, and that the way forward is totally unknown, and that now maybe the cancer in my lungs will kill me. The odds of finding a clinical trial seem slim. The prospect of my death is more real now. I said in the beginning that I was OK with dying if that's what was going to happen. I'm not sure about that now. I guess I'll know when it happens. 

I suppose in my life, I have kept my distance from friends and family in some way. I remember telling someone years ago that the reason I didn't want to have children was that I didn't want to be tied to this earth. Mostly it wasn't a conscious philosophy. But I feel like having a kind of cancer that's full of question marks has caused me to be more connected with people, and feel more of the pain of potentially being separated from them. 

Had a chapter meeting this morning that was good, though kind of painful due to the repressed pain of being around my mom for several days. 

I watched four movies four days in a row. None tonight though, but I might try the first episode of The Walking Dead... 

Sunday, November 25, 2012

Steps, movies, and reviews

A dead pelican in Newport Beach (and me)
Photo by Jeff Perrin
8,484 steps.
Movie with Po, aunt Kay, Lily, and 2nd cousin Rachel: Twilight Saga: Breaking Dawn part 2 (Scale of 1 to 10, I'd give it a 2.)

2,334 steps.
Movie with Po, Lily, and Jeff: Life of Pi. (My review: Partly good, partly hella boring. Maybe a 5.)

Sunday (today)
14,504 steps.
Matinee with dad, Chris, Po and Jeff: Lincoln. (My review: Excellent.)

My health is slowly improving. I worry that my toes will be numb and cold forever, but very little of forever has passed since I had chemotherapy, so maybe not. Wait and see. I sleep well, just like I did before all this came to pass. My head is getting fuzzy with hair, but not in all the places that hair used to grow on my head. Like in the female sideburn area, there is nothing.

Jeff and I on the Balboa ferry
Ok time for bed. Getting up at 4:30am to drive home missing rush hour in L.A...

Friday, November 23, 2012

Points of view on lungs

Resin Cast of the Human Lungs
and Bronchial Tree by Ralph Hutchings
Resin Cast of Human Lung Section Showing the
Bronchi and Bronchioles (Yellowish) Airways (White)
by Ralph Hutchings
Unattributed from Fuck Yeah Anatomy blog

Wednesday, November 21, 2012

Gramma's squash pie

I'm at my dad's watching a James Bond movie, The Man with the Golden Gun, 1974. Currently the midget who played Tatoo on Fantasy Island is pelting Roger Moore with bottles of champagne. I just made a huge pot of mashed potatoes. All I put in it is peeled potatoes, some of the water I boiled them in, and garlic. Don't tell anyone.

Today I got up early and drove to Banning to pick up my mom. She is doing well. She seems in good spirits and her memory doesn't seem as bad as it sometimes is. My dad is slowing down a lot.

Gramma's squash pie recipe
I've felt rather energetic since I got here, not that there aren't issues, but having energy is cool. I also felt a bit crabby today for some reason, possibly from not meditating in three days due to early morning duties. Dinner tonight was at Souplantation (virtually equivalent to Fresh Choice in Northern California). I love a big salad with lots of different veg (no bread, dessert or pasta!)

Laura emailed me some info about the tumor-reducing potential of cannabinoids. There's a clinical trial for brain cancer at UCSD. It's interesting but I don't feel hopeful about being able to find a clinical trial.

Licking mom's shins
Logged 8,000 steps on my pedometer today.

OK. Friends and 30 Rock reruns or bed...

Tuesday, November 20, 2012

Cheeseball cancer movie

Los colores del
 Mexican cheese puff
I'm in the bigger upstairs room at my dad's, watching a not-great but nevertheless tear-jerking Hallmark Channel cancer movie called "Living Out Loud". Ever notice that chemo patients in movies only lose the hair on their head? They have perfect hair-based eyebrows.

I was going to transcribe a bunch of quotes from Dr. Fuhrman's book, but don't have the wherewithal. Anyway, I'm a vegetarian again. The book is basically a summary of about 2,000 studies related to nutrition, and a suggested fresh vegetable and fruit intensive nutritional program. He cites numerous links between fat and protein - especially but not only animal fat and protein - and disease. (I am already avoiding most of the types of foods he suggests but not eating enough veg.)

It's great to be united with my heating pad and pedometer, etc., again. I'm driving out to pick up my mom in the morning to bring her back here for Thanksgiving.

Sunday, November 18, 2012

Radiation redux?

Had a chat on skype with Candradasa last night, and with Paramananda a few days ago. Dhammagita sent me the photo of Paramananda's son, Harvey, at a science museum dressed as a cockroach. He's rather angelic looking isn't he?

I finished A Portrait of the Artist and enjoyed it though there were Latin, Catholic and Irish terms neither my Kindle dictionary nor I understood. I usually like to read a Mexican novel when I am in Mexico (etc) but a deeply Catholic memoir works here, too.

I am reading Eat to Live by Dr. Joel Furhman (originally loaned to me by Tania.) It makes sense. Well. It may only be interesting if you are particularly concerned with your health, or with losing weight. The health problems he mentions are mostly a result of the 'modern American diet' (MAD) which I have not had for a long time, and about health problems other than cancer, but I thought this was interesting:
La Parroquia, San Miguel
The link between  thinness and longevity, and obesity and a shorter lifespan, is concrete. Another important consideration in other animal studies is that fat and protein restriction have an additional effect on lengthening life span. Apparently, higher fat and higher protein intake promotes hormone production, speeds up reproductive readiness and other indicates of aging, and promotes the growth of certain tumors. For example, excess protein intake has been shown to raise insulin-like growth factor (ICF-1) levels, which are linked to higher rates of prostate and breast cancer. 
The notes reveal that some of these studies were around hormone sensitive cancers (not what I have.) I have certainly been increasingly overweight, which I'm not prepared to say "caused" my cancer, but OTOH it couldn't have helped. I want to get with the J Fuhrman plan once I get back to my dad's.

The last few days I've felt that the side effects from the radiation are re-emerging. My hips feel very tight and sore, and when I try to stretch them a bit, they hurt more later. I am also very tired the last few days. Is it from the food? Dr. Fuhrman might say yes. Actually I think another factor might have been the writing, or at least, sitting still for hours at a time.

...I'm back in Mexico City, or, as the locals say, Mexico. Leaving in the morning.

Back at Lena and Maya's

Saturday, November 17, 2012


Armando Romanelli, 2005 (Brazil) 
Got a note from Misha. She knows Dr. Gonzalez in New York. She again suggested Keith Block, but we will talk on Nov 27. My only issue with seeing Block is that I don't know anyone in Chicago. Based on the websites, Dr. B. does seem better.

Did a short day trip to Guanajuato yesterday, a 500 year old city. It was like being in Spain, only with brighter colors, graffiti, mariachis, and Mexican food! The taxi driver said they call San Miguel "Gringolandia"... but it's good and quiet for writing. In the main square (I think) an Australian woman gave me a flyer for an Indian restaurant, where I went to eat. I bought some sprouted bread from them. She said it had no sugar in it but I doubted it. Anyway it was better than anything else I've had lately. I wanted to ask her if it was a hari krishna restaurant but didn't have the nerve for some reason. Walking around I saw flyers for some language schools: the Escuela Mexicana and Learn Spanish Adelita...tempting. I didn't get any good pictures of the city, only of renditions of Don Quixote from the Museo Iconográfico del Quijote. It's delightful that one can take photos in Mexican museums.

Quixote-like figure from the creator of
La Calavera Catrina, Jose Guadalupe Posada
Should I stop saying my toes are numb? Perhaps I'll let you know if they're ever not numb. I wear double wool socks whenever I can. (Wondering if the numbness is only noticeable when I walk down stairs.) Sadly I left the glutamine that's supposed to help (don't know if it actually does) at home. Also, was shitting blood yesterday, the effect of eating little fiber on my irradiated guts...I think my December holiday will have to include a kitchen.

I'm back in the biblioteca publica in San Miguel. Must buy something today. Am not into shopping, at all. After lunch...

I'll be in So. Cal. on Tuesday, home around the following Tuesday.

Thursday, November 15, 2012

Post from San Miguel

Someone in hell, possibly a
Buddhist, demonstrating
my favorite mudra.
I was approved yesterday as Dawn's preceptor, yay! So if all the other ducks get into a row, I'll be flying to Spain in May to ordain her...

Having a great time writing here. I wish I were staying a couple of weeks and I'd take some time to look around, like at Guanajuato (WA-na-WA-toe.) I stayed at the public library all day yesterday and got a lot done. Well, didn't get a lot done, writing is rather slow for me, but anyway, worked on it for five or more hours. And had a burrito there for lunch, possibly the best I've ever had, and a nice salad with shredded raw beets. I know one is not supposed to eat raw veg here, but I am not cautious, that's probably why I have cancer. (Joke. Broma.)

It was an adjustment when I first got here, as for the last two weeks I've mostly been with either 50 or 2 or 3 other people. Here, I don't talk all day...except if the internet at the hotel holds up I may have a skype call every other evening. There are a many folks here del Norte who mostly seem to be arty women in their 60's and 70's.

Much art and architecture we owe to the Catholics. The sublime and the silly.

Best 70 pesos I ever spent

Tuesday, November 13, 2012

The Witch of the Mexico City Buddhist Center

Chintamani shrine room
My hair is growing back, it is awesome. At this point it sorta looks like weird white fuzz in a bald man's hair pattern, but that's ok, I'll take it.

I'm in San Miguel de Allende sitting in my little enclosed patio. Kathy and I managed a skype call last night. She was wondering why I'm so anti-chemo (she didn't put it that way.) In case that is not clear to others: it is not that I am against getting more chemo per se, more that they had no idea whether or not the last one was going to work, and they will have no idea whether the next one will either. It is an educated craps shoot. And it's not like you just go get a shot that may or may not work. Your veins get hooked up to an infusion machine for a total of about...30 hours, and the whole treatment (which I will remind you, didn't do anything other than cause side effects!) took between five and six months. And you may have some of the side effects for the rest of your life. I guess Dr. Nelson will want to start chemo again if or when I start getting symptoms, and/or if the nodules get bigger. (Unless only ONE is getting bigger, which means they can use CyberKnife, a relatively painless kind of radiation.) In short, even though it's much better than it was 25 years ago, chemo still blows. When it doesn't work.

I have five full days here to focus on writing. I've started on the introduction. If I manage to get a draft, and I hope I do, I'll post it. It's ideal conditions EXCEPT for the food. White bread, no veg, and the fresh food you buy is used by Montezuma as a way to exact revenge. Eating the awesome food on retreat or of Maya's was much easier!...I bought some stuff at a grocery this morning, including carrots which I rinse with hot green tea...

I remembered I'm supposed to be getting an x-ray and wrote to Dr. Nelson about getting an appointment. Apparently it's drop-in for x-rays. A mistaken look at Wikipedia tells me, again, that scans increase cancer risk. Dr. Nelson had mentioned that an x-ray exposes you to 1/1000 the radiation of a CT scan. (By the way, x-rays are what we think of as a bone x-ray, but a CT scan, a PET scan, a bone scan are types of x-ray. The radiation treatments I got were also x-rays that can cause cancer in 10-15 years, just postponing it I guess.) Not inspiring though the number of scans I've gotten might not amount to much in the way of increased cancer risk. Anyway I should probably start worrying about the future when it's more likely that I will have one.

From the excellent
Museo Nacional de Anthropología
I wanted to write about the time I spent with Dayachandra on the retreat. I met her last time I was in Mexico, over a decade ago, I think her name was Cecilia then. She spoke no English and I spoke more Spanish than I do now. Somehow we loved each other as if we had always been friends. We are always delighted to see each other. Last time was at the Order reunion in the UK. Thankfully she had learned some English; my Spanish was complete crap.

Turns out she does a lot of what she calls "energy therapy." She seems to be something of a shaman. We had a wonderful conversation; we now both speak Spanglish! She told me to talk to my cells, that cells are intelligent. To ask them to revert to their healthy state. They will respond. They are my friend. She also drew a diagram involving two triangles and a human body (see reproduction, below) that I didn't understand at all.

But if my cells are healthy, how did they become cancerous? Did cancer hijack them? If so, do they get to choose? Although these kinds of questions are perhaps irrelevant to this kind of conversation, it's how I think, I can't help it. I need to have an angle on it that makes sense to me. So I've been doing it. I ask my cells to breathe, to go back to breathing. Dayachandra said she would do it also, from a distance. She also said I would be all right...

The drawing was
something like this
I am motivated to use my mind to try to heal myself. Kathy mentioned a time when her four year old son had a virus that the doctor didn't understand. A friend advised her to put her hands on his knees and say silently, Heal Thyself. So I do that too. I ask my lungs to revert to their natural healthy state, which is a state of breathing, of transferring oxygen. I say, Heal Thyself, Heal Thyself.

Sunday, November 11, 2012

In Mexico, tuna is a fruit

At the Mexico City Buddhist Center.
I am in Mexico City, staying at Lena and Maya's in Tecamachalco. Maya made us the most amazing dinner last night! Georgian food (fried eggplant rolled up with walnut paste) and vegetarian sushi.

The retreat was wonderful. There were over 50 women, around half from the US and Canada and half Mexican women, at a beautiful and spacious retreat Center in Morelos state, called Chintámani.

I felt very sad, or at least cried easily, the first couple of days. I tried to welcome it, I have cried so little this year. The first day of the retreat was Day of the Dead, which I LOVE, but I felt too weepy to participate much. I very much enjoyed leading a Vajrasattva puja (ritual).

Trying to speak and understand Spanish to chat with folks on the retreat was a bit frustrating for me. (For events everything was translated.) By the end my Spanish had came back a bit. I have been told I have a good accent in Spanish, but unfortunately I don't know many words and am trapped in the present tense...

Symptom and self care update:
  • For sale in Tepoztlán
    My toes are still numb. They might be slowly getting less numb, it's hard to tell. Walking down the pyramid (Sun Temple at Teotihuacan) yesterday was a little scary. I got a pair of sandals specifically for this trip but have hardly been able to wear them because my feet are usually cold now, even when the weather is very warm.
  • I slept great on the retreat with no drugs. I am very very happy about this.
  • Digestion has been weird but that's caused by the herbs Misha gave me which I have mostly stopped taking.
  • I am not eating a lot of veg or getting as much exercise here. Although yesterday we walked a lot, including up the large and amazingly steep steps of a pyramid. PT, Dawn and I were talking about doing some kind of cleanse/fast when we're all back. 
  • I have around two (total) eyelashes now. There are a few new hairs on my head. 
  • I had a couple of days of extreme fatigue on the retreat, not sure of the cause. Sometimes that happens on retreat. I think I burned my eyes a bit too (I was not often in direct sunlight. My eyes seem to be very photosensitive now, possibly because of burning the crap out of them while in Tahoe a few years ago). And the pollution from burning cane fields. 
  • I felt some congestion, or something, a slight ache, in my lungs. (Could be from the air quality, or emotions.) 
At a local church
I have an appointment with Dr. Nelson on Friday, December 7, 11 am.

I am reading the excellent A Portrait of the Artist as a Young Man (public domain books are free on Kindle), and Subhuti's paper, Re-Imagining the Buddha, which I am mostly enjoying.

Heading for San Miguel de Allende tomorrow morning. More about the retreat later.

Las cosas como son. 

Thursday, November 1, 2012

Alternative therapies, post from México D.F.

Renzo somehow attracted to the shrine
OK I won't stop blogging, probably, until I'm dead or there's no wifi. (One of those will occur Nov 1-9.)

There's a New Yorker article (Feb 5, 2001) about an oncologist called Nicholas Gonzalez,"The Outlaw Doctor," that a friend sent. It's very interesting. His influences (from early 20th century) were: dentist and microbiologist Dr. Wm. Kelley, and embryologist Dr. John Beard. I need to read the New Yorker article more thoroughly. The thing that bugs me is when people only offer positive results of their treatments. It was the same in the video about Gerson Therapy (I believe it's on Netflix.) It very strongly implies that they only ever get positive results, no one dies.  I'd love some statistics like "X% of the people with Stage Y cancer I've treated who followed the program were alive five years after treatment." I suppose I could write or call them and ask for that kind of info and see what they say.

Should I be seeking out alternative treatments during this time "between treatments" rather than traveling? I can't help but obsess over this question, and others. But the retreat will give me something else to focus on.

In the mean time I've had a lovely two nights and one day with Lena and Maya here in Mexico City. They are lovely people! And Dawn arrived tonight. Tomorrow morning Lena, Dawn and I will head to the retreat.