Trying to Drink Whiskey From a Bottle of Wine

An old tree at Boggs Mountain 

This is a line from an old Elton John song (or are all Elton John songs old?) that went through my head many times during the two weeks I spent alone at the SFBC Sugar Shack in Northern California.

I wrote a few draft blog posts, none of which survived, because I felt they were too whiney, they were trying to drink from the wrong kind of bottle.

My tumor, the primary and biggest cancer, is gone. I was told by the doctors and expected, and I suspect others expect, that my body would roughly go back to how it was before. Yet, I seem to be suffering, in one way or another, more than I was during treatment.

I spent the two weeks, among other things, getting to know my body as it is now, and not wanting to get to know my body as it is now. I had many dreams of frustration, trying to pack, trying to ascend a staircase, trying to take a shower...many efforts thwarted. (I also heard doorbells, and someone knocking at the door, while in the house, and smelled incense [in my car] when there was no one there!)

A place to ponder

The health section of The New York Times recommends that people with arthritis  avoid staying in one position for too long. Which is a big part of what meditation is, of course...at least the kind I have mostly been doing for 20 years. Dealing with this change is going to take a lot of getting used to and creativity. Of them all it is what makes me the saddest.

I do feel that in four months, my body has aged 10 years, in some ways. I've been doing yoga every day on retreat, and this helped my pelvic bones feel much better. I will do what I can to counteract the effects of the treatment, and who knows how things will be in a year, but for the moment it is, off and on, deeply depressing.

On another note, I just sent my email re-entering the consultation process to become a preceptor and ordain Dawn next year, the prospect of which makes me very happy.

On an even less obviously related note, it occurred to me that in addition to the gold that the Europeans found in California, they must have gotten boners as well seeing the trees here, how incredibly enormous they must have been. In Boggs Mountain park there was ONE old Douglas Fir, around 6 feet wide, huge. This area was full of Doug Firs possibly until the 50's. It's not that the trees here are small, or many of them are not, they just don't seem old, they don't have girth...I remembered that some part of the history of humankind is the history of deforestation, going back many thousands of years. It makes me sad, because I really really love big old trees.

While much of the densely populated areas of the world have probably been deforested many times, until relatively recently, Northern California was still jam packed with huge, beautiful old trees. The only place in the world with Redwoods, some like 20-story buildings, thousands of years old, with their own unique ecosystems in the sky. I do realize that I am staying in a house made of wood, and my home in San Francisco is made of wood. And we burn wood here to keep warm!...Still, I feel sorry for the millions of trees, and the millions of birds and other animals that depended on them to live.

Broken, OR, The Power of Ideas

I am on the first day of my solitary retreat at the SFBC land in Lake County. I have come into town to buy a few things and check on email from Spirit Rock. (I am on a waiting list, and also requested a private room.) Sadly I didn't hear anything from them.

Most of this I wrote in my tent last night:

The Power of Ideas sounds like a corporate marketing slogan. But the thing is, ideas are powerful. And slogans are often true. By an idea, here, I mean a thought. A thought like one I had today, my body is broken. By which I understood myself to mean, hurt. Very deeply hurt from the machine- and chemical-generated abuse it underwent.

Random sign in Lake County

Part of thinking is re-thinking, discovering what you were thinking before, that you didn't even know you were thinking. I thought of my treatment as temporary, with temporary effects. Dr. Patel told me the side effects would go away after a month or so. But here it is, two months down the line, and side effects abound.

For example, I had a hot flash tonight. I have never had a hot flash before. The occasional stabbing pain deep in my gut. Soreness in my hips and knees. Arthritis...was it caused by the radiation? I don't remember hearing about that as a possibility. Painful urination. More gassy, less bowel control. Some of my teeth are sore. I sleep 10 to 12 hours per night. An occasionally intense need to be alone, inarticulate, can't quite explain, a deer in the headlights. Confusion. A dream about driving, trying to get home, and everything moving around, home is getting further away and the route more confusing. Finding being around more than one other person, even people I know and trust and love, stressful. Strange effects from food. Like sometimes after I eat certain foods, normal foods that people eat, like breakfast cereal with wheat in it - but it's not normal because it doesn't have any sugar - my vagina itches for a while, which makes me anxious. First the itching and before you know it you have cancer again. (This is also a thought.) Or sometimes my face will itch.

The Order posse trying out ideas for
next album cover

One morning, say, I feel better, energetic, and I think I am done with recovery. I am done. But the change seems to be non-linear. The next day I feel broken, weary.

I thought that on around March 22, all the pain and trouble would be over, or close to being over. And that thought keeps getting friction. It seems that in some ways my body is irreparably damaged...or is that just an idea? In any case, my body feels different - behaves differently - than it did a couple of months ago. They aren't differences anyone would wish for.

Idea: The inevitable deterioration of my body took a great leap forward in the last three months.

Facts. Grief coming from my body today, crying and crying. It's a relief to let some of it it out. Meditation feels emotionally healing.

...I just googled "radiation side effects arthritis" and found more online forums from cancer survivors. Here is a quote from a man who had anal cancer and got 26 radiation treatments:

...The collateral damage has been enormous. It's been over 5 years now since I had this done and it is only getting harder to move around as the years pass...I was only 43 when this happened - the radiation "aged" my body exponentially. 

Geez, why didn't anyone tell me how badly my body was going to be messed up? I have to start doing YOGA!

Vagina. Vagina. Vagina. It used to be a sexual word. It used to be a private word. Now it's like Leonard Cohen's broken hallelujah.

Solitary Retreat until May 2, Food Issues

Outside wall of Radio Habana Social Club

I'm going up to Lake County for an Order retreat, then a solitary retreat, tomorrow. I'll be back around May 2. Getting ready/shopping/packing is exhausting!

I went to the UCSF support group yesterday. I like going to that group, in spite of being really sensitive, and get rattled by people giving unsolicited advice, which the world seems to be full of, even when it's not directed at me. Energy-wise I am very high-and-low still, also sometimes unable to sleep.

I'm starting up the process again of becoming a private preceptor, in other words to go through a several month process hopefully in the end authorizing me to ordain people into our Order. Which hopefully will be Dawn, next year.

Misha gave me my new treatment plan, seven pages, which is excellent. And I never read the second half, post-treatment part of Life Over Cancer which I will bring with me on my solitary.

Misha has told me that studies show more and more of a link between sugar and cancer growth. So I thought I would go back to my zero sugar policy, but haven't. This is simply because of the amount of discipline and effort it takes.For example, the jam I have has sugar. When I went to the bar, it was either water or a drink with sugar in it... I am certainly eating a lot less sugar than I would like to.

I'm also eating a lot less meat (by which I mean, flesh of any kind!), as the cravings are less frequent. Noticing how much discipline and effort it takes to be a vegetarian, for example, when you're at an Italian restaurant and the vegetarian choices are all starchy with little protein. I suppose in the past I would have tried to avoid such restaurants, or maybe I didn't feel like protein was such an issue.  Still, I'm around 95% vegetarian at this point. I guess I am still to some degree prioritizing my health over the lives of the animals.

And I'm craving caffeine! I suppose I am wanting to go back to my previous routine. I'm bringing no sugar on my solitary... Feeling better brings new challenges...

Musings + I Didn't Think Anyone Liked Me So Much Etc.

Savanna's aunt Judy's mandala
not quite captured

Did I write about this already? I might have. Were people not sweet before? Or was I not sweet? Or was I oblivious to affection? It seemed before like no one, or most of no one, gave a crap. Now people want to talk to me before I kick the bucket presumably. Don't get me wrong, I like it. I should keep this cancer story going for a looooong time.

Interlude: I realized something about Dr. Tavakoli. I had asked him to be direct. Based on a couple of our conversations, I'm not really sure that he can be. I mean, he can be direct about conveying results from studies, but those things aren't...what I meant by being direct. (I refer the reader to my post Optimism or Pessimism which talks about ways in which studies are and are not relevant.)

Anyway. The way individuals have responded to my illness seems to correlate to their past experience of illness. In other words, if they nursed an ill husband, or had a close friend with breast cancer, etc., or dealt with some kind of illness themselves, then they're sort of 'here' in a way that other people are not (even if they're not geographically here!) In other words if you have had little experience of illness, pain, or disability, you don't particularly resonate with someone who is very ill. This is not a complaint at all. (It's exactly how I was around 5 months ago!)

I'm enjoying reading Cheri Huber, who someone on the monthlong Buddhafield retreat last summer - I can't remember who - recommended. The book is Trying To Be Human.

It seems like I'm getting a tiny bit more energy every day...

If You're Looking For Me In The Next Month Or So + Info

Note the San Francisco skyline in the detail of my
Medicine Buddha (painted by Tarakarunya)

Just had a chat with Dr. Tavakoli.

He said there was some concern about my lungs from what showed up on CT scan (also could be nothing). So they still want to do the PET scan in May, which by the way is 'labeled glucose', whereas the bone scan is 'labeled phosphorus'. Anyway, if there is disease progression, there will likely be 18 weeks of chemo. If there is nothing, no chemo, and things will just need monitoring, what kind of monitoring and how often will have to be determined.

Otherwise here is my medical/retreat/misc. schedule!

April 10, acupuncture
April 13-May 2, Order retreat followed by solitary retreat at Lake County house
May 3, SF dentist & haircut
May 4-11ish, The OC
May 13-20, Spirit Rock meditation retreat
May 30, PET scan
June 16-24, SFBC Summer retreat
July 4, Montana?

A Visit, a Tower of Song, and a Serial Killer

Delightful Savanna is here for the weekend from New York. After a nice breakfast at Chloe's and ambling around Valencia street, we went to the Conspiracy of Beards concert at the Center. It felt like church singing in the most genuinely uplifting sense. Or anyway, my kind of church. The power and beauty of the voices bring out wonderful details in the poetry of Leonard Cohen.

Conspiracy of Beards
photo daviddelp.com/hardly-strictly-bluegrass/

I crawled into bed and watched the documentary Aileen: Life and Death of a Serial Killer. It was haunting and profoundly sad. I have had very little physical violence in my life, but somehow I very deeply resonate with the pain of situations of extreme violence, especially against women and the sad stories of the perpetrators, both of which are part of her story. I remember reading an account of a Cathar (early Christian sect) woman being burned alive. I cried for a long time. After watching the movie, I had a dream that I saw Aileen Wuornos and told her that even though she was betrayed by those who sold her story to Hollywood, it was good that some of her story was told, especially in Nick Broomfield's last documentary.

I feel silly that I wrote about wanting to stay in bed writing all day. Well. I wrote to Dr. Tavakoli to ask what the current deal is, if it's time for me to turn into Lance Armstrong...I  hope that you realize that what I write here is true, but only insofar as the present moment lasts.

Transitions

Daffodils, jasmine, lavender, and lilac,
from Dayamudra & Nancy

I was going to go for a hike this morning but stayed in bed much of the day instead. So tired. Too much excitement?

I'm a little concerned that I am still so tired. How long will it last? Or am I no more tired than the next guy, just that I can sleep as much as I want to? How much energy am I supposed to have? I seem to have less than other people. I think the docs did tell me that the fatigue could last for a few months.

In the afternoon I went for a walk up to Bernal hill with Karunadakini, then met some folks at The Lone Palm, a bar up the street, for celebratory libations. Robin, Dayamudra, Trish, Bill, Nancy, Mary, Rochelle, Mike, Padmatara, Dhivajri, Helen. I had a ginger beer. Walking home I wanted to stop and buy ice cream but somehow refrained.

A few months ago I left my world and entered the world of cancer. Now maybe I'm coming out of that world. I don't know whether I am or not. I'm assuming I still have secondary cancer/bone sclerosis, but I don't know what the implications of this are. But in some ways I don't want to leave cancer world. I want to keep having a lot of space in my life, and for things to be simple and loving, and to be able to rest when I am tired, and to spend hours lying in bed absorbed in my thoughts, writing.

You might say, wow, do you want cancer or not? What I want is a sane, spacious, and reflective life. I dread my awareness thinning out because it has to take in so many things, and then starts hungering for them...

Of course, I don't want the pain. In the support group yesterday someone suggested a website that seems to be just people with cancer discussing their issues. I am learning a lot. I saw there that even though few people have vaginal adenocarcinoma, many, many people get pelvic radiation. Anyone with cervical cancer gets a virtually identical treatment to what I got. I saw that some of the people who beat cancer end up disabled from the treatment. Either because they lost or wrecked a body part, and/or because they are in constant pain.

¡Ay Caramba!

Portugese graffiti ("Day of the Living")

Today I had a somewhat painful exam (because of scar tissue) in Santa Clara with Subir Nag, the doctor who did all the internal radiotherapy. The first thing he said was, beautiful, good. Because my tumor is gone. He said that it was a large tumor, and he has no doubt that it has completely vanished. I don't know exactly what this means in terms of the future but it would seem to be another, more significant best case scenario.

When I first met him in January he had told me that he was sure he could get rid of the tumor, which was far and away the boldest statement any doctor had made at that time, or since. I thought, "We'll see." (Hope and fear must be managed!)

He said doctors have different styles, some rely totally on scans etc, but he relies on how it feels. He said I could get the PET scan, wouldn't hurt, but no more information would be revealed from it, and it would not effect future treatment plans.  Bless his cotton socks! He has felt and treated thousands of tumors. He said this week he had treated cancer in eye, prostate, and ovaries...

Lake County resident

He had been concerned that the tumor was so deep that once it was gone I might need surgery to patch things back together. Surgery might still  be necessary in the future. For the next year or so, scarring from radiation is a risk. (I have no idea why scarring continues for so long after treatment.) For example, my urethra could become blocked by scar tissue and would need to be surgically stretched open again. Also, the vag could shut down as it were, so that sex would not be possible, or just painful. There are things I can do to help reduce this possibility, but nothing much to be done about the urethra as far as I know.

Padmatara and I couldn't quite get our minds around this news...we went for veggie burgers and pinot grigio at the Beach Chalet. The water was super choppy, incredibly cold wind out there today...we watched para sailers zooming by...

For those of you who are local, I'll be at The Lone Palm tomorrow (Friday) 6-7pm if you'd like to join me for a celebratory beverage. (22nd/Guerrero)

Questions for Dr Tavakoli

Am I done with treatment for...at least a while?

Busy (For Me) Day

I'm sorry if reading my last post made you wish you could sleep in, or  made you think I am lazier than you already thought I was. It's true that I have a great love of sleep, cancer or no cancer. (Apparently a sleepers' gene has been identified. Around 50% of my family has it, unless they're at my house, in which case all of them have it.)

Today I did four things. Went for another consult with Misha and Elisa, met with a social worker, Susan Chen, at Kaiser for half an hour, chatted with Tong for a while at the "Sugar Bowl", went to the weekly support group at UCSF, and meditated at sangha night. Pooped!

The support group was GREAT. Such nice people. The consult with Misha was also great. I may write up something about both later. Misha did emphasize anti-inflammatory foods, especially no or very little sugar. Stevia is ok. Ack. For a couple of months I didn't eat anything with added sugar in it, and was mostly not tempted by such things. This may be difficult at this point, but I will try.

Followup email from Dr. T about taking taking pamidronate:

"I gave you a call but could not reach you. You do not have extensive bony involvement (based on the CT and bone scan). It's reasonable to wait until the PET scan to determine the course of action. Generally, pamidronate has been used in patient's with solid tumors (lung, breast etc.) that have bone involvement, in an attempt to decrease the number of "skeletal related events" (i.e. fractures). Although there is no way of quantifying your risk, at present it does not appear to be high. Although there are many potential side effects (as with any medication) the most common ones associated with pamidronate are low calcium (hypocalcemia) and kidney dysfunction. Let me know if you have any questions. I have hospital rounds this week so there may be a delay in my replies to your messages."

typical san franciscans

Evolving travel plans:

I searched high and low for a retreat in mid-April and found the Heart Sutra retreat in Wales, which got nixed because it is a men's retreat! And the retreat at Joshua Tree got nixed because I couldn't get a private room. Then I was thinking about visiting Montana and doing a solitary...nothing seemed right, until the land became available. So I think what I will do is go on solitary retreat there for two weeks, then head down to my dad's for about a week, then do a little road trip maybe to Utah/Nevada for a week or so. I have a follow up exam with Dr. Littel on May 25. Misha also suggested getting a second opinion on the next phase of treatment...

Tomorrow, a follow-up exam with Dr. Nag down in Santa Clara, reiki with Tania, teaching the drop in class, then skype call with Kathy. 

Cancer Helps Me Do Nothing

photo by paris cullen

It seems that when I don't have to get out of bed, I don't. I fully plan to, and know that it is the right thing, but I don't. My bed is like an anti-siren that keeps me from traveling...

I have lots of things to do, just nothing that has to be done right now.

You wouldn't think that someone lying in bed all morning would have issues with it. But this morning I noticed around the edges thoughts like, Oh, does this mean I'm depressed? How can I live  without caffeine? And I thought about the things I ought to do. Meditate, figure out solitary retreat, walk or find a yoga class, make this appointment or that one, figure this or that thing out. Fact is, I always feel like I should be doing something, unless it's Sunday morning.

And as long as I am reveling in self disclosure I may as well add that there is also a tinge of fear, that the henchmen of the protestant work ethic will swoop down and serve me a cup of good coffee.

If I'm not going to get up, why not just lie in bed, unified?

I decided not to worry. I lay in bed until noon, thinking about stuff...

For example, that around four days ago taking a shit stopped involving pain.

I finished reading The Final Solution by Michael Chabon and Mennonite in a Little Black Dress by Rhoda Janzen.

I may stay up at the SFBC land for the last two weeks of April. In spite of pondering Mexico and Hawaii, I may end up in an eco hut on the northern coast of Oregon after that. I don't know if I have the wherewithal to set up anything more elaborate. Plus, I have a car.

I am not in a hurry. I have no ambition. I have no bucket list. I move slower than I used to.

I thought about how strange it is to have people worry about you and not want to bother you. It's strange influencing distant friends and acquaintances by virtue of one's disease. The me and the you of me having cancer is not to be sniffed at. There's a lot more to this, but alas, I am somehow ready to get out of bed.

I leave you with a few words from Yoda:

Medicine Buddha

A tube arrived in the mail from "TKY" in West London, which is Tarakarunya who I was ordained with in 2001.

I think she must have painted this! There was no note with it.  It is very beautiful.

Kathy is getting it framed by the super nice guy, Randy, at Back to the Picture on Valencia, so I will get it back around April 12. Can't wait!