Thursday, February 28, 2013

Hope and fear in The OC

This morning I arrived at my dad's in Costa Mesa. I'm making him a lime walnut tart for his 83rd birthday tomorrow. He is doing better than I thought he was. He is sometimes repetitive but in other ways he is pretty mentally sharp. Laura and I will head for L.A. tomorrow night and the train to New Orleans.

I had a wonderful day yesterday. It started with an hour of chi gung at the tennis court with Teng How (shown on the left, not his best side perhaps), a short nap upon my fatigued return, Misha's for acupuncture, and the MBSR course I'm co-teaching with Bill and Allison. My body is sore from the chi gung but it makes me feel great.

On the table at Misha's, I visualized my lungs being healthy, healing energy coming to me from the universe, and briefly White Tara (archetype of long life and wisdom among other things) appeared above my head. Then I bonded with the guy, Drew, who came to do moxa and take out the needles. Usually the person doing moxa asks that I let them know if it gets too hot, but it never does, I'm assuming because of numbness. This time it did get too hot...does it mean there is feeling coming back to my feet? Or was he simply less timid? They do seem less cold. If it has changed it is very slow so it's hard to say. But I felt very happy when I was there and had a great chat with Drew who gave me the all time best foot massage (at least that I've ever gotten there, possibly ever!)

While there I thought, Ah, I ought to do this all the time: Maybe find a photo of healthy lungs and visualize them all the time, imagine healthy energy, in the same way that we "scoop up the energy" doing chi gung, descending into my lungs. (Of course I haven't done it since then but thinking about it was damn inspiring.)

Co-teaching the MBSR course is interesting. I know that we are helping people a great deal, well, people who are up to the task anyway. What's interesting is how my confidence in myself waxes and wanes. I sort of alternate between wondering if I'm a fuck-up or a fraud with feeling incredibly inspired by what we are doing (and how we are doing it.) (The class however is incredibly late for me, and the second half especially I was very tired. I got home at around 10pm.)

Anyway, I'm here now.

I spend much of every day looking after myself in various ways. People, including doctors, no doubt including me, have very strong opinions about what I'm doing, or have done, that helped, or not. Whenever I cough or I'm tired or whatever, some small voice in me is saying, Is it cancer? Is it happening now? Or it says, What if I went into, or am in, remission? What will I do? And yet another part of me hovers somewhere else, immune to hope and fear.

Monday, February 25, 2013

Thirst, fatigue, writing

The almost full moon last night
on 22nd Street.
I seem to have found someone, Teng How, who will do chi gung/tai chi with me almost every day in Dolores Park. It feels great. He's not particularly gentle, but he's available and willing, bless him! He gave me a pep talk today. I wanted to take a photo of him doing a handstand against the fence but couldn't tell if I had his permission so didn't. (He just laughed when I asked.)

Saw a couple of films with Greg AKA Satyaloka: Django Unchained (FYI, the 'D' in Django is silent!) and The Silver Linings Playbook. Former was good, "uneven" perhaps is the term, and yes, I think even more vividly violent than Tarantino's other films. Latter was very good. Both Greg and Pasadini have now left town.

It occurs to me rather late in the game that some people reading this will have no idea who these people are. Hint: if they have nonstandard, usually long, names, they are ordained members of our Order. Often they are people who used to live in this building, as did the two people mentioned above. Almost everyone is a Buddhist who I know through our Order, or this Center, or we have shared a living space at some point. For example, I have lived with Padmatara for almost 15 years, and with Karunadevi for around the last six months in the three-story building whose ground floor is occupied by the San Francisco Buddhist Center. We live on the top floor. The middle is Shantinayaka and Elaine, plus some guests and occasionally classes.

Insect- or crustacean-themed
sliced beet
Had a good chin wag (I love that expression, British) yesterday with Elvin at Que Tal cafe. At the end he encouraged me to be more assertive with my doctors, which I think is good advice.

I will need to get a CT scan at some point, last one was in December. Dr. Nelson is uncommunicative. I am not in a hurry to get another one. It's a lot of radiation. Plus what will it show?

I say that I don't have any symptoms, but I do get very tired, especially in the last week. Possible reasons:
  • Lung nodules sucking the life out of me
  • Allergies or bronchitis or some kind of virus
  • Being vegetarian (started that again this year)
  • Ordaining someone and leading retreats and having visitors. (At one point after her retreat, Hridayashri was just as tired as I was!)
Also, I am thirsty, it seems, all the time. There seems to be some blood in my lungs, although I am pretty sure I am coughing less since starting the antibiotics.

I'm considering just doing medical updates here (and perhaps the occasional burning philosophical points when necessary!) and putting more energy into the  book.

I skyped with Vidyadevi (she is in Wales) about my book, pondering some 'next steps.' Though catchy, "Crap! I've got Cancer!" seems too flippant a title and not reflective enough of the actual content of this blog. But I'm into catchy. Any suggestions for a catchy title for my book (based on this blog) appreciated! 

Friday, February 22, 2013

Roller coaster awareness and a different doctor

Warning at Lands End
Thursday was a long, long day, so tired. It started at 10:30 at Kaiser, a super helpful meeting with the palliative care social worker, Carol Gerstein. One of the things we talked about was the shorter/longer life expectancy "roller coaster" and the fact that I want to get off of it. She suggested rather than trying to get off of it, trying to be aware of being on it. Very Buddhist advice I must say!

We also talked about financial power of attorney, and the advance health directive. Beware of language such as "do what is necessary to save someone's life." It is very misleading. (Several medical people I have talked to had read the useful article Drew sent a while ago, How Doctors Die.) Unless they're given other instructions, doctors have a legal obligation to keep someone alive (no matter how damaging, painful and ultimately pointless the methods of keeping them alive are.)

Carol saw on my medical record that I had sent an email to Dr. Nelson (re red worm-shaped thing I'd hacked up) and hadn't gotten a reply. She talked to Anna Dowling, Nelson's assistant, who suggested I go over to the GP and ask him if he thinks it'd be better to see him now rather than Monday. Which ended up meaning I was at Kaiser for about 5 hours (including the pharmacy.)(Also I had forgotten my purse! That caused some complications, most of which thankfully Tong bailed me out of.)

I like my GP, Dr. Herman, who I haven't seen in years. As I suspected, the red phlegm resembles worms because they are in the shape of the bronchial tubes they are ejected from. Since I have allergies and asthma in my family, he said my cough could be caused by either, or bronchitis. I am taking antibiotics for five days. If the cough goes away, it was bronchitis. If it doesn't, it would seem to be one of the other two, which I guess don't have a 'cure.' Dr. Herman questioned my oncologists' saying my cough was unrelated to cancer. How can they know that, he asked? (I wonder if they meant my cough is not directly caused by constriction in my lungs due to the tumors? Which is different from saying it's unrelated.) But I was tired and spaced out by the time I talked to Dr. H. and couldn't really answer some of his questions, or keep up with things in general.

So I'm taking antibiotics, which (I imagine, possibly) have already lessened my cough. This morning I met Teng How at the tennis court at 8am in Dolores Park for chi gung. It was sunny (though cold), it felt great.

Satyaloka arriving today from Montana; week two of MBSR (Mindfulness Based Stress Reduction) course coming up on Weds (Bill is the main teacher); then Thursday head to my dad's and the train to New Orleans with Laura. (Po and Jules meeting us there.)

Wednesday, February 20, 2013


"Life lasts but a few scratches of the claw in the sand." Wislawa Symborska

Very bad picture of study group (after two people left)
Me, Julie, Savanna (front), Ann, Hridayashri
I had a great time at the retreat this weekend, which Karunadevi and I led. Friends came from Seattle, Hawaii, Missoula, New York, and Canada, plus locals. Some of us have been doing this retreat for 20 years. I led the most excellent study group ever (I mean because of the people in it!)

I felt an astonishing amount of gratitude. I thought of how many doctors' appointments Julie has gone to with me. One afternoon Dayamudra set me up with a few restorative yoga postures. Elaine swept my room at the end. I can't actually remember the other things I was thinking of but they were pouring from my heart; the sense of gratitude was enormous. Almost the whole time, well, many, many of the hours there, I felt intensely present, calm, happy, and grateful, and on the verge, or over the verge, of tears. To have the life that I have, to do what I do, to know the people that I know.

I'm working on a poem I started on Hridayashri's ordination retreat, "House on Fire," which I read during the final ritual. I will try to put it in the next post. (I'm getting some help finishing it.)

Spider web at Jioji
Healthwise: On the retreat I crashed at around 8:00 pm every night, as if an evil-doer had placed the old at-8:00pm-you-will-turn-into-an-achey-old-lady hex on me. Cough is about the same. I have hacked up, twice, some small, very bright red, worm-shaped phlegm. According to an article from the ever-omniscient internet entitled Snot and Mucus Decoded: The Meaning of Snot Colors, it could be a sign of bronchitis. The American Family Physician website says that the usual causes of blood in phlegm in adults are are pneumonia, bronchitis and lung cancer. As much as it pains me to think of talking to another doctor, I made an appointment with my GP for next week. He's actually a cool guy, he meditates. I haven't talked to him in a few years.

Saw the movie The Sessions last week, thought it was surprisingly well done.

P.S. You may have been wondering, Who is Trebor? He is an old friend who lived in this building in the '90's. Currently he is living in Berlin.

Friday, February 15, 2013

Layman's terms

Two unphotogenic people achieve a pretty good 
photo helped by sunset at Lands End. 
(Trebor went back to Berlin on Weds.)
Several people have commented about how technical my last post was. I didn't realize. I guess I've been geeking out on stuff too. I could have said, Or just read the last four paragraphs.

I talked to Jen the medical assistant from Dr. Block's office. I had called them and asked when their recommendations would be rolling in...turns out Dr. Block thought that she was going to call me, and she thought Dr. Block would...she also thought I was planning on going to Chicago to get treated. Alack. Here are their chemo recommendations, short version:

Their primary recommendation are drugs called Taxotere and Gemzar. I didn't think to ask about side effects. I hope I never need to. The two drugs could also be supplemented with a targeted therapy - not chemo, it's an antibody that turns off a growth signal called VEGS - called Avastin. It's FDA approved for cervical cancer and some good info about it has come out just in the last few weeks.

I got a copy of Dr. Munster's (UCSF) report from Misha, my acupuncturist. (She's in their system and they sent her a copy.) They also sent it to Amy Nelson, my main oncologist. But not, of course, to me. It was good to read. A few things in it aren't true, as I mentioned, they are based on what I could recount from memory about scans. Some odd things in it too. Like under drug history, it says "whatever was available." I must have written that on the intake forms! That's not true either.

Misha thinks my cough might be do to with allergies, which kind of makes sense to me, as it comes with allergy-like fatigue and no other symptoms. She was also wondering about "black mold" since it seems to be worse in the morning. I'm not sure about that and unfortunately testing for it is super expensive. Here's something from 8 Causes of Chronic Cough. Should go to an allergist, or whatever that's called. Plus an optometrist, and...

Co-leading a retreat with Karunadevi - 'til Tuesday.

Tuesday, February 12, 2013

Dr. Munster on the roller coaster

Sunset and hint of a
retreat house in Lake County.
Yesterday, Nancy, Trebor and I talked to the director of early phase clinical trials at UCSF, Dr. Pamela Munster. It's hard to know what to say about it, partly because initially she was so intense, and not in a pleasant way. (Oncologists are amazingly stressed out. I would love to teach all my oncologists to meditate!) The operation also seemed rather disorganized.

On a non-cancer related note: During the preliminary blood pressure tests etc, I found out I am an inch shorter than I used to be! Which totally bummed me out. I thought that was supposed to start when you're around 70.

Yoga! Yoga! Yoga!

And now, back to the malignant main event.

Dr. Munster was convinced that my cancer, while it may have been "rapidly growing" at one stage, can no longer be described in this way, because I still have no symptoms. She said that the Carbotaxol chemotherapy I did must have continued having an effect of slowing the growth. I am inclined to think that other things I was doing slowed the growth. Of course there no proof either way.

The canceling of my "rapid growth" status was encouraging, however, it was based to some degree on my recounting of scans from memory. There was some confusion, as they could not seem to decipher my medical records, they apparently did not get the report from the January xray, and I cannot necessarily remember correctly when I got what type of scan. Plus, Dr. Munster appeared to despise xrays. The experience would have been a lot more satisfying if before the meeting someone had checked in with me about what info they needed, or if I had proactively inquired.

So some of her assessment may be based on my faulty memory. But people with tumors in their lungs can go down quickly apparently. My oxygen absorption is 98%, same as it's been for the last year. I told her (from memory) how much the nodules had grown in the January scan and she said it doesn't even count as growth. (Only a 20%+ increase in size means anything.) She was also emphatic that you can't tell anything about the growth of nodules from xrays. This page would have been super useful to look at.

Waiting for Godot with Trebor
(in Dr. Munster's office)
We got some pretty interesting information about current early phase clinical trials, especially one that is in pill form called CC-115. (The other one for you geeks out there was a Paclitaxel combined with a macro-phage inhibitor. Wheeee!) I do not see any reason to do a clinical trial, unless someone can tell me it's likely to work better than anything else. Also, Phase 2 or 3 clinical trials are usually specific to certain types of cancer, which in effect eliminates me, and Dr. M said there were practical disadvantages to having a rare type of cancer in a phase 1 trial. She said something like, You'd be likely to be randomized against nothing. Have a vague sense of what that means, but it doesn't sound good.

If/when it gets to the point where I'm choosing a chemotherapy, unless a drug for metastatic vaginal adenocarcinoma miraculously appears, I'm going to choose the one with the fewest potential debilitating side effects, none of which will be neuropathy. I haven't really heard of any better criteria for choosing a chemotherapy in my particular case, since what might work seems to be anyone's guess.

Dr. M said she would do a new biopsy. One reason is that the genetic markers on the metastases can be different from those on the original tumor, which I didn't know. (Lung biopsy carries a small risk - .5%? - of collapsing a lung. Danamaya says they can fix it!) I also couldn't remember what the results of my tumor sequencing had been. Apparently that wasn't in my records either. Nancy remembered that the original tumor is "HER2 negative" which is to do with hormone sensitivity. I didn't remember "positive for EGFR immuno-histo chemistry." They can do tumor sequencing on 300 common mutations. Of course when I asked if the genetic info about each of the mutations is actually useful, she said no.

It is astonishing to me the amount of information someone with cancer, or anyway someone with a rare cancer, is expected to retain and analyze. Talking to oncologists is really more like a massive rapid-fire science brain dump in which they give mountains of often undigested information and one is expected to make sense of it somehow. A friend of Trebor's who is an internist said ideally they would help you with the decisions, or ask how they can help with the decisions. He teaches at UCSF/SF General and works with palliative care and hospice and I'm sure is a wonderful communicator with patients and doctors.

She listened to my lungs and, like Dr. Nelson a month ago, said they sound clear and healthy. Her basic message after an hour and a half of talking about stuff (first half hour to a resident) was pretty much, You're healthy, get outta here. Come back when you can bring CT scan images over a six month period, and cancer symptoms to go with them!

By the end, she was very nice and friendly. It was very interesting getting a completely different point of view on my case, however, I don't imagine I will go back to her. Of course if I did go back to her I'd make sure all the ducks were in a row and she'd likely be much less surly. Fact is, no doctor has, or professes to have, "the answer". They have different personalities and approaches, but they all have roughly the same data.

In any case, it was good news. I am very cautious about getting back on the "everything is fine" and "everything is not fine" roller coaster. All information applies only to now and maybe the next month or two. But it seems at this point that I maybe have a bit more time than I thought.

Sunday, February 10, 2013

Whew +

During the ceremony
It is a very interesting process naming someone (especially in another language!) If you're on Facebook lately you will already know this part. But in case you're not: Yesterday at the public ordination, Dawn became Hridayashri. It means "Radiance of the Heart". Laura and Jon were there which was nice.

It's also interesting wearing robes. I like it. It feels simple. I don't really know how to do it, so there are hazards. Like walking upstairs and tripping over them, or wrapping them so tight that I can't sit on the floor! I had it pretty much figured out for the ceremony.

Today: brunch with Trebor (visiting from Berlin), Laura, Jon and Julie, at Pomelo in Noe Valley, and a stroll to the excellent chocolate store. After a nap, Pasadini (visiting from Scotland) and I went to Sports Basement, REI, and T Joe's. I often find shopping such a chore, it's great to go with someone!

I feel good, tired.

Here is an excerpt from my journal during Hridayashri's ordination retreat:

The "Tender Hearts" chapter 
From left, Karunadevi, me, Hridayashri, 
Padmatara, Dayamudra, and Viveka

Identity seems to be fading a bit. I thought it might.

Am I young or old? Sick or healthy? Weak or strong? Rich or poor? A meditator or not? Worthy or unworthy? Anxious or calm? Tolerant or irritable? These identities come into sharp relief as words that stop meaning anything.

Who is my self? Where is my self? Who is the self that angsts, that narrates, that projects into the future? They don't feel like me. They feel like something happening.

Wow. All that meditating. Now let me think...I have been here seven full days. Including morning pujas and sitting meditations, I've meditated...260 minutes a day. So 30 hours since I've been here. I had one rewarding meditative experience today, say for around half an hour or an hour. Is that a good reward, good odds? You can't even know for sure that anything like that is going to happen. You can meditate for years and it doesn't happen (potentially). Of course the rest of it was good. It's not like that was torture. If it were I couldn't spend 30 hours voluntarily doing it. It's a kind of being - or leaning in a direction of a kind of being - that is its own reward.

And in any case being able to drop, or rise above, the narrow confines of the way I usually experience  myself for a few minutes is worth...whatever. It is the most subtly liberating yet undefinable experience. And when you're having it, it seems like ...normal. The rest of your life, plus those other 29 hours you were meditating, those are the hours that are weird, that don't make any sense. If you thought about that, but you don't.You see through the conceptions of world and self for what they are: pain fantasies through which experience gets filtered. Every single possible metaphor has been used. The veil etc. Things as they really are. Nothing can convey an experience of mind and heart that are free, however temporarily, from delusion. Nothing to defend, destroy, protect, create, explain. Nothing, even, to understand.
But "astonishing" is an epithet concealing a logical trap. We're astonished, after all, by things that deviate from some well-known and universally acknowledged form, from an obviousness to which we've grown accustomed. But the point is, there is no such obvious world. 
Wislawa Simborska  

Friday, February 8, 2013

Things I don't know

The public ordination is tomorrow and I have much to do still. But this blog is my friend - as are whoever you are who is reading it - and I simply have to check in with you sometimes, even when it would seem more sensible to do something else!

Here's a photo that Padmatara took on Feb 5, the day after the private ordination. We had a great time.

It was exhausting, too, but not too bad! There was a lot of stillness and a lot of activity. Much planning goes into such a thing. Karunadevi, Padmatara and Danamaya appeared at some point for a few days to help, each in different ways. It was lovely to have them there. Then the private ordination, a deeply moving, beautiful experience.

During the two weeks on retreat, there were some useful reflections on my life and death. I became aware of the degree to which I am living as if I don't have a future, having no plans after April, certainly none for next year. Sometimes this is sad for me, sometimes it's neutral. Sometimes it's kind of liberating, like there is space in my mind freed up that used to be packed out with ideas about the future.

Vernal lake near the retreat in Lake County
I'm taking loads of supplements, some of those recommended by Keith Block, and drinking Misha's gross potion four times a day. I still feel healthy. I guess I'm going to live longer than a few months. I was told "a few months to up to a year" on December 7. It's been two months since then, and while I do cough a lot, I do not otherwise feel sick. But the prognosis is a perpetually moving target. "I don't know" is much simpler and less jarring.

Turns out chanting makes me cough (more). I did plenty of coughing on the retreat, much more when I was tired. Something else I managed to stop speculating about was whether the cough is caused by cancer. A few weeks ago Dr. Nelson said it wasn't, but I've coughed a great deal since then. Again, kept landing on "I don't know" which felt so much freer than always having to have some kind of answer.

The retreat was, among many other important things, another cancer holiday, during which, relatively speaking, I hardly thought about cancer and doctors and choices and chemo at all, which is very restful for my mind.