An Hour in a Shaking Trailer

The back of the trailer

A PET scan is a picture with a bunch of bright dots on it. The dots represent high metabolic activity, which means cells that are wolfing down glucose (sugar). Also the digestive tract will show up clearly in the picture because of the barium banana drink. (Some doctors want you to have the barium, some don't.) The scan itself takes about 25 minutes, after allowing the radioactive tracer they shoot you up with to circulate. Being in the donut tube is actually pretty relaxing after you get over worrying about moving.

When I was sitting for half an hour letting the stuff circulate, all there was to look at was a machine of unknown function, and an EXIT sign on the door in front of me. I thought it strange that there was an exit sign in a room no larger than a closet. Probably a law? I remembered the signs in the London underground - they say WAY OUT, which is a much older way of saying it in English, whereas EXIT must come from Latin. It may seem like, and no doubt is, a strange thing to think about. For some reason I am interested in Anglo-Saxon (Old English) words.

Anyway now that PET scans and CT scans are done at the same time, the collection of bright dots comes with a kind of map. One gets the impression that before this development the PET scans were rather hard to interpret. Also according to the self identified technologist, exploratory surgery was much more common before CT scans. It was the only way they could see what was going on.

These days, people seem to have a lot of faith in pharmaceuticals, beyond what the chemicals might be capable of delivering...but for certain aspects of modern medicine, I am intensely grateful. At some point in the not too distant past, the medical response to my condition probably would have been to surgically remove the tumor, along with some of the rather important contents of my pelvis. Whatever health problems I have now, at this point they do not involve carrying around pee and poo. Allah be praised!

The donut tube in the trailer

My health plan does not have a PET/CT scan machine in San Francisco. So if you get it done in San Francisco it's contracted out, and you have to go outside to a trailer. From inside it seems to be in one of those San Francisco wind corridors, you could hear the wind howling, and, stepping outside onto the little platform that lowers you down, feel the blast of an arctic gale. I'm going to cross that off my list of places I might like to end up working!

My confidence about positive results of the PET scan is waning a bit...The aches and pains in my lower gut and back, can I really know that the cause of them is not cancer? Ah, one more day to find out, I hope...

P.S. Since my last post, some folks have kindly reassured me about my own sexiness. In that post (about not being sexy), I was writing not about how I think I look or am being perceived, but about how I feel on the inside...

Exam, Talk, + Brief Maniacal Planning

A hallway

Julie and I, just like old times, went to Kaiser today. I had an exam and chat with Dr. Littel, who is a gynecological oncologist (an impressive 10 syllables) and a surgeon. Dr. Patel had suggested that because he is the only gynecologist in my posse of doctors, it might be good to get a follow-up exam with him. He was the first oncologist we met, in January I think.

The exam wasn't as painful as I thought it might be. He said there is a freckle sized bit of scar tissue from the radiation (which will probably never go away.) Or it could be dead cells that have yet to free themselves. We asked a lot of questions. He is a really great communicator and uses a lot of metaphors which I like. For example, he said the distant disease thing is like dandelions. If you pick the dandelions, other ones might appear elsewhere, you don't know until later. In response to my question about whether or not I will 'always' be considered high risk for cancer, he said it is all based on history, and I don't have any yet! As years pass, if my scans remain clear, the perceived risk diminishes. I asked him if it would be all right to ask him questions after the PET scan since Tavakoli is away so often. He said he would be happy to, but also that from now on Dr. T. wouldn't be away any more than anyone else and that “He would have been much happier if he hadn't had to leave last time.” The plot thickens...

Strangely, the most helpful thing he said - in response to my asking about my current symptoms - was that many of his patients report feeling 10 years older after cancer treatment. I would say 15 or 20 years...But it made me feel better because otherwise I keep thinking all these symptoms are going to end, that I'm not supposed to feel so much older, especially when I get out of bed in the morning, stiff and creaking like the floorboards of an old house. When suddenly I need to take a shit and I fear I will not make it to safety...Those are the main things I suppose, other than sleeping, say, two hours more per night than I did a few months ago. ...Oh yeah and the hot flashes are fricking out of control. I know it's a thing that happens to women of a certain age, but I feel that that is not the age I am at right now! I'm sorry to be a whiner. The idea of dying didn't bother me as much as the idea that I have aged 20 years (in some ways) in three months...

Glad I don't look
as old as I feel?

So, I feel a lot older than I did a few months ago, in ways that I may or may not have ever happened without the cancer treatment. Of course without the cancer treatment I'd presumably be dead before finding out whether I as going to get arthritis in my hips 'naturally'...

So what Dr. Littel said about his patients feeling older helped me accept this situation, and that feels better than not accepting it. (Then if it goes away, all the better!) On a related note, a couple of people have told me they didn't understand the part in my last post about my sister noticing that I didn't seem to have any anger. Was it a criticism? No, it was a compliment, something she was impressed by. I thought that was obvious! But it wasn't.

I had a very frustrating time at the Kaiser pharmacy trying to get the Barium, which I will drink the morning of my PET scan (tomorrow.) I won't go into the frustrating details. I'm also going to start taking Estradiol for menopausal symptoms. I have three months' worth, I'm going to take it for that long and see how it goes. Misha suggested it. (My type of cancer is not estrogen sensitive so it isn't risky.) I also tried to get a blood test (Misha also suggested I get tested for Vitamin D) but didn't know I was supposed to fast, so have to do it another time.

I've got possible plans bursting out of my sides, but will not reveal them until at least Friday, at which time I will find out the results of tomorrow's scan, which will show 1) whether or not the known cancer in the bones has shrunk, stayed the same, or grown, and, 2) whether or not there is new cancer anywhere in my body.  I will know by around 5pm this Friday. I have felt for the last while that the cancer will be gone, and everything is fine.

Worry & Sex (Not As Interesting As You Might Think)

Another thought I had on the recent retreat was...well really it felt stronger than a thought, it felt more like a vow. I thought, I cannot live for the rest of my life, however long that may be, afraid of getting cancer again. I simply will not do that. At the same time, I do feel committed to taking better care of my body, eating more nutritious food, getting regular exercise more consistently...

In what ways is my body
like this bleached beer can?

Over the last few years I considered, and eventually lost interest in, the idea of becoming an anagarika (shorthand: a nun), at least in doing so formally, but now I'm coming at it from a different angle...My body does not tend to feel sexy. More often it seems like a wad of symptoms. For example, yesterday, this sort of swath of reddish freckles, a lot of them, appeared on both my shins. It almost looks like a heat rash. My lower back aches. And I have some degree of either chronic fatigue or inveterate laziness. In order to be less unhappy, and reduce physical discomfort, I spend a great deal of time meditating, eating/cooking healthy food, doing medical stuff with both doctors and alternative medicine, stretching, taking supplements and medicinal tea, writing, and eventually, I hope, working.

But you can't say these things in a personals ad...or can you?

Low income 48-year old Buddhist Leo just learned a new phrase, 'medical menopause'. Otherwise, hopefully recovering from vaginal cancer, going hot and cold like a broken fridge in the tropics, soon to be unemployed, and blogging about it all. Care to swap suppositories?

Perhaps I sound bitter? I am not. Just not sexy.

I'm simply unaccustomed to not being...hearty, and being in pain. I am not in a lot of pain, and not all the time. It's a lot more work. Will I get used to it? I try not to complain. I need to look back over what I wrote before, the things I wanted to remember about life.

A delightful moment on Skype

My sister Kathy said last night that it seemed from this blog that I am not angry or fighting the fact that I have cancer, and that it seemed like that when she saw me. Geez, talk about adding insult to injury, at least I'm not doing that. As the Buddha said, like throwing a handful of dust into the wind.

Real Things Remind Me Of Fake Things...

...like the clicky bugs at Spirit Rock that sound like a quickly shuffled deck of cards. The sound of cawing crows outside the shrine room evoked an image of Google's Angry Birds (on the right.) Years ago, partly due to altitude sickness, a mountain in Nepal reminded me of Disneyland mountains. Before even that, I was accused of plagiarism by a famous poet at Cal, partly because I thought of Brutus primarily as a cartoon character. Anyway.

Something's always pointing to something else, especially words, they're always leading you somewhere. Words such as cancer must be one of the most fear-inducing words in the English language. Say it: Cancer. Where does it take you? The word changes the body. Chemotherapy, another doozy. The radiation I got ended up being far more painful, with longer term side effects, but I don't think radiation is one of those words.

One of the ugliest interpretations of
this female Buddha that I have
ever seen! Interesting though.

I want to say a little about my recent retreat at Spirit Rock. The main thing is that I was able to sit in meditation more than I thought I would, which was an absolute joy. I did a lot of yoga to stretch out my hips which are so tight. One day I even felt a great deal of peace in my body. But then the next day it all hurt (sitting and doing yoga, lying in bed at night with my sacrum throbbing.)

Last night, my friend Stephanie* helped me refine some simple yoga poses and advised against others (like the lying down twist, which I used to love but which hurts now.) She would suggest something a tiny bit different from what I was doing, and my body would suddenly feel so amazingly right. After a couple of minutes, I felt so happy. In general I have been in very good spirits since the retreat, which is nice, since transitioning off retreat often seems to be very difficult for me.

Left: Historical Buddha
Right: Female wisdom archetype from
Mahayana Buddhism (same figure
as photo above)

The type of practice they do at Spirit Rock is very similar to what I am used to in the Triratna ("Three Jewels") Buddhist Community. Ours it must be said is more 'religious' in that we do rituals and get funny names when we're ordained. We also, I think, emphasize kindness, community, and creativity more, whereas (it seems to me) they're all about meditation/ mindfulness/ wisdom. I loved their Equal Opportunity shrine (see right). In any case I am grateful to them. My last 'retreat allowance' from working for the center paid for most of the retreat, it dawned on my I need to figure out a way to get on retreats, moving forward...

One other thing about the retreat. The first day or two I felt this sadness, but as if I were somehow out of touch with it. The next day I stopped taking prozac**. One is not supposed to do that, but I figured I am taking such a low dose it would be fine. And it was. I felt more in touch with myself. I also stopped taking the masses of supplements for one day, which helped my digestion. After that I cut down on a few things. My condition continues to improve, albeit very, very slowly.

I did apply online for SSDI (Social Security Disability Insurance). What happens next week will determine whether or not I continue with my application or cancel it.

Dr. Tavakoli is leaving town again. So frustrating. I'm sure he has a good reason, but he can't function well as my main/coordinating doctor if he's away so much. So no meeting after the PET scan, but he has a backup, Dr. Shaia (not even the same sub as last time he left!) who I will hopefully be able to talk to. (Alternative is to wait 10 days or so to get the results.)

Next appointments:

Tuesday, May 29, Dr. Littel - He is the first oncologist I met, back in January I think. I have many things I want to ask him about, working with my various conditions that I have now. Julie is coming with me.

Wednesday, May 30, PET scan - the results of this scan will show whether or not my body is free of cancer. If not, chemotherapy...

Friday, 9am - Meet with SSDI folks; 2:30pm talk to Dr. Shaia.

FOOTNOTES
* Stephanie lives in Puna, India, near Iyengar's school, for many years. She travels all over the world training teachers of therapeutic yoga. Here's a video of her.
** I've been taking a small amount (10 mg) of fluoxetine for about a year primarily as a perimenopausal mood stabilizer. But the treatment has abruptly removed the peri...

Bummer

It takes me a while to write these posts, usually an hour or two a day spread over a few days. Which is why, when I accidentally overwrite one that was almost done, it really rattles my cage, which is what I just did. So it will take me a while I think to write another one. In the mean time, enjoy these two lizards who were catching some rays, as we used to say, on my recent retreat. 

The Mask

A recent (2012) photograph by me of a 1970's
drawing by me of a 1960's photograph
of me with my cat in the dryer

This post is about conflict.

The conflict I felt when my mom wanted to take back the stereo she had just given me, which I didn't want, but had accepted so that she would get rid of it. Irritation at nothing, at air, at air acting the way air acts. She assured me if she didn't use it she'd remember to give it to me later. I assured her she would not remember. Why? Why be so linear? Why start a sword fight with a windmill?

I left San Francisco motivated to be kind, to see behind the masks. George Orwell: He wears a mask, and his face grows to fit it. People do stuff, they can't help themselves, they want something. We want something, we grasp, harden, soften, loosen, tighten, half the time not knowing why, what's underneath. There's confusion behind a lot of what we do. So I resolved to try for a time not to be so deeply distracted by appearances. To look beyond the mask and see that compassion is the only sensible response.

...And then the internal conflict about applying for SSDI (social security) which I finally did yesterday. Do I really want to? Am I sick enough? Will they give it to me? What if they don't? Why didn't I apply earlier? Because I thought I would be, at this point, either very well, or very sick. I didn't consider other scenarios, nor did they occur to me, even once. Yes or no. Yes or no.

My mom's hands, a few days ago

...And seeing how I use food for comfort...for something that is not technically what it is for. The conflict is some sense of, it shouldn't - I shouldn't - be this way.

...And always, I should meditate more. Especially lately, feeling disconnected from my formal sitting practice. Shoulda coulda woulda.

Conflict is painful, and yet trying to get rid of conflict is to add another layer of pain.  In a way, trying to be kind makes not being kind more painful. And that's ok too.

The kindness that I cultivate for others must also apply to my own failures, my own confusion, my own irritation, my own losing of my way...

I would like to edit this more and write more, but I must leave now for a week's meditation retreat up in Marin county.

"Through Love all pain will turn to medicine." Rumi

Compassion

A couple of nights ago, making my way home from a solitary retreat, I stopped to visit my friend Lisa who - after many years of apartment living - beneath a freeway in Oakland - now lives in a house in Novato, at the north end of Marin county.

Betty
Photo by Lisa Sogliuzzo.

She takes care of a 91 year old bed-bound Irish woman called Betty. The photo doesn't quite communicate the feeling I got from her. She has a delicate face and manner. The most striking thing though was how cheerful she was. She thinks about people who are suffering and prays for them in her spare time, and most of her time is spare, she can't really do much else. I got such a feeling of peace and kindness and lightness from her.

I guess if you have complete faith in a God who you feel is always doing the right thing, there is nothing to be pissed off about. Perhaps the Buddhist version would be complete trust in the basic principle that whatever happens is contingent on myriad conditions, which in a way is the opposite of a great being making all the decisions, but similar in that a kind of trust in the reality of all situations becomes possible. Perhaps both attitudes can produce a deep sense of a lack of control, a letting go that is incredibly freeing, and conducive to happiness.

Skyward

Of course, meeting someone who has been unable to get out of bed for 10 years puts one's own suffering into perspective. You might say, well, she's 91 years old, it makes sense that she's very ill. A situation might appear to be more or less tragic depending on one's circumstances, but at the end of the day, suffering is suffering. Does one ever think that suffering is supposed to happen, that it's the right time? There's a degree of tragedy, at least for the person who's got it going on. I've been feeling sorry for myself to some degree, and meeting Betty put that into perspective.

She seemed genuinely happy and light hearted, without denying what her difficulties were. She said, "I miss being able to do things." She had been a very busy woman in her life. She was grateful for the care she was getting, and aware of so many others who do not have it. And she was sad to have virtually no living friends her age, but accepted it all with a striking grace and engagement.

Betty made me want to think of other's suffering more often, to be kinder.

Doodles for Recovery

My response to the question,
"If illness were a monster - what would it look like?"

I went to a three-hour art thing today for people with cancer. It's part of the larger Art for Recovery program at UCSF.

It's funny, over there - just around the corner from the Geary Street Kaiser building - I get the feeling when I tell someone I'm from Kaiser, that they feel kind of sorry for me. I can see why, not in terms of medicine, but in terms of other kinds of support. They got it going on over there. I went to a therapeutic yoga class yesterday. There's dance, pilates. It's all free and open to the (cancer patient) public.

Graffiti, Petaluma gas station toilet

It was nice to be around people who have/had cancer. Most of them are either disabled by/in pain from the treatment they had years ago, or they are still actively battling the disease, sometimes over many years. They seemed like a pretty tight knit group but they were also very friendly.

I felt understood, and listening and talking while doodling is excellent.

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!

My Senior Citizen Pelvis + Updates Galore

Twin Peaks in the distance (radio tower is on right peak)
from Bernal Hill. TP is the 2nd highest point
and the geographical center of the city. Random factoids.
Photo Paris Cullen

On Wednesday I had a CT scan; on Thursday, a meeting with Dr. Tavakoli, who is my main oncologist now, to discuss it; and Friday, a complete bone scan. Some of it might not make perfect sense but it's what I can manage at the moment. It's a lot of information, gleaned from scrawled notes...


Notes on Dr. Tavakoli Meeting 

The pelvic bone sclerosis (scarring) is unchanged since the last CT scan in November. In other words, I have responded very well to the treatment. Apparently, on some people it has no effect...

Dr. T said my condition fits into the category of "solid tumors with bony involvement." He suggested a course of pamidronate, which is in a class of drugs called bisphosphonates, to strengthen the bones/decrease chance of fracture. Dosage is 60-90 mg every 3-6 weeks for up to *2 years*. Side effects: 5% chance of osteonecrosis of the jaw. (These last two are no doubt what I get for asking that he not hold back!) It is not a cancer treatment - it's for quality of life.

He did not say much more about the drug and what it does. Drugs.com says "Pamidronate is used to treat bone damage caused by certain types of cancer such as breast cancer or bone marrow cancer." I was surprised by the suggestion because...I thought I was done for a while anyway, and I didn't know I was at risk for bone fractures. He said we could talk about it more after the bone scan.

He said not to worry about gall bladder 'wall calcification' that was listed on the last PET scan report, unless there is pain.

There has only been *one* study of vaginal cancer, and it was only 20 people (not statistically valid I think.) In that study, there was a 50% chance of people with advanced stage cancer living more than 5 years. Women with advanced breast cancer have even worse odds, based on better statistics, only one third live more than 5 years. (On second thought I think it's probably better not to have these numbers!) As Dr. Block says, these kinds of statistics are not relevant to individuals.  In any case as I'm sure I have said before, there is no survival data for vaginal adenocarcinoma.

Six months from now (Sept/Oct) I should know if this is an aggressive cancer; the PET scan will also be a major milestone.

Photo by Paris Cullen

More about the reference to Stage IV patients as 'treatable' rather than 'cureable'...though I may have already explained this elsewhere. This means they treat it but don't expect it to go away. Best case is that it will be dormant for a long time. The usual cycle with cancer is to alternate between dormant periods, and periods of treatment.

Is local metastases better than distant? Yes, but likelihood of it turning into distant mets is very very high. Is cancer in the bone more life threatening? No, best to look at it all as one cancer. Is the best way to evaluate my primary tumor with a physical exam? Yes. I will make an appointment with Dr. Littel. He also suggested I discuss my concerns about planning my life and so on, with a social worker.

Dr T said he would follow up about the lung nodules with the radiologist who wrote the CT scan report. Also ask Dr Littel to check my gall bladder when he gives me an exam. (I'm going to wait until I heal a bit more until I get an exam; last one, mid-radiation, was amazingly painful.)

By the way, PET scans are evaluated in terms of SUVs - will I ever get away from those letters? (In this case they stand for "standardized uptake value.")

I felt good after this meeting. It seemed like it was the first time I had gotten any info about my response to treatment, and about the future. Before then it had been all about "I don't know. Let's see what happens."

If the PET scan in May/June is clear, I'm good to go. I will get a CT scan every three months for say a year, then every 6 months. If the scan is not clear, chemotherapy every three weeks for 18 weeks.

An entire skeleton scan, which didn't really touch
my nose. Kathy and Tong were in the room. 

Photo Tong Ginn

Bone Scan

A visit to Nuclear Medicine department...an injection of a radioactive tracer...a trip to Walgreen's and a wifi cafe so Kathy could write her blog post. Then back to the hospital to lie down very still and watch a sort of square white plate with a crosshair in the middle of it move very slowly from my face to my feet. Having to lie still on a scanning table is, generally speaking, rather relaxing.

When I got home there was an email from Tavakoli:

"The bone scan shows the following (essentially involvement of the pelvic bones but no other evidence of widespread disease involvement)[in other words, metastases remains localized to pelvis.]

Thought a repeat of this old gem might be in order

"Labeling abnormalities were noted to involve the left inferior pubic ramus into the ischium, and right of the pubic symphysis, extending into the right inferior ramus. There were degenerative changes [meaning early signs of arthritis] in the hips. The overall labeling pattern was otherwise unremarkable. [The tracer I was injected with is also called a label. I believe it is what shows up in the scan/gives off radiation. ]

"-I would recommend pamidronate infusion every 3 to six weeks as we discussed."

I emailed him back with a few questions. His reply: 

"The changes in the hips are related to arthritis according to the bone scan. The other findings are related to the cancer and are in line with the prior PET scan. Please let me know if you would like to proceed with the pamidronate infusions."

Cancer AND arthritis. Grand. My pelvis is quite the senior citizen.

Well I had 24 hours of thinking I would likely be free of scary drug regimens for at least several months. I thought I'd only need to receive the pamidronate if the cancer in the bone had gotten worse, but alas...
I have a lot of questions about this. I am thinking that unless it is really crucial, or will not hugely effect my quality of life, I don't want to do it. But we'll see. I need more info.

My email to Dr. Tavakoli (We'll talk on the phone hopefully next week.)

I understand that pamidronate is not a cancer drug, but it seems to be administered in the same way as chemotherapy, and it seems some of the side effects are the same (nausea.) I had been thinking I wouldn't be on any more drugs, at least until the PET scan...anyway, here are my questions:

Where does the path lead?

1. No one has said anything about me being at risk for fractures this whole time...so fractures are considered a real danger for me? Or is it unknown so the med would be 'just in case'?  My understanding was that the bone sclerosis had not deeply penetrated into the bone.
2. What are the risks of not doing it - breaking my hip? Likelihood? Can I get a measurement of bone density (like the ones they do for osteoporosis.)
3. Alternatives?
4. What are the common side effects? (A quality of life question. You mentioned jaw osteonecrosis but that seems to be fairly rare.)
5. For how long? (''up to two years" seems like a long time!)
6. Are there advantages/disadvantages to longer or shorter cycles? (3 or 6 week)

Should I get a second opinion?

To Do

Appointments with Susan Chen, Dr Littel, psychic!

Email to update Misha