Saturday, December 29, 2012

Cremation parade +

Kadek, the lady who cleans our room here and shows us around, invited us to a cremation. Really? You just invite random people to a cremation? Perhaps needless to say, the attitude toward death here seems to be amazingly different. The event itself wasn't so much a cremation - at least not what I think of as a cremation - as a series of rituals that include a huge party, a parade, and a cremation. And maybe things after that, but that's how long we stayed.

First we waited around for hours in the boiling heat for the procession to start. When explaining the communal aspect, she said, Some day I am going to die, and I will need people to help, or something like that. During which time it rained buckets and the air cooled down quite a lot. We had a big umbrella. I noticed when we were in the procession that random folks would just come and stand under our umbrella, which of course they would, why not, except people in the west wouldn't do that. There was a huge bright red lion (with astonishingly realistic genitalia!) maybe around 25 feet tall, standing on a bamboo grid that was used to carry it...and hundreds of people, some musicians, some on motorcycles, most walking, some carrying offerings. So after walking for a while we ended up in a park where the huge pink horse was put under an awning type thing and the top of it was cut off. The body was taken out of another 'float' in the parade, put inside the horse (sorry, not a horse, a lion!) and the top put back on. Then a big pipe full of gas is shot at the horse lion and it all goes up in flames.

Among other things, it made me think of how much more 'relational' other cultures are, how you sit around chatting all day, which is lovely on the one hand (on the other, I personally find it kind of exhausting!)

On an unrelated note, suddenly I have an astonishing amount of hair (white hair, but still) on the side of my face. Given the right light my sideburns could easily be mistaken for Hugh Jackman's AKA Wolverine's in The Avengers. I tried to get a picture of it but my camera isn't up to the task. It could be that my hair is growing back weird after chemo, or maybe it's just one of the many perks of my newfound membership in the middle aged lady club.

Kathy and I went to a lovely spa yesterday called Spa Hati (Heart Spa). We were talking about acceptance. I was saying the only thing I have a hard time accepting is certain physical changes I feel like I'm "too young" to have. As I have mentioned before, some physical problems I have are shared by many people (older, my age, and younger) who are just dealing with them anyway. I am simply not used to having physical problems so I imagine them to be more of a hardship than they are. Like every once in a while I bash my foot on something...or I'm sitting on my bed and can't lean forward far enough to reach something that is actually rather close...all in all, not a big deal.

Kadek and I. She brought us there one
at a time on her motorcycle
and lent us sarongs.
I wanted to add a thought to the three tips from The Etiquette of Illness I posted last time. I post things like that because I find them interesting, then after I post them I think, The people who have done the things advised against in that list, do they think I am chastising them in some way, or upset when they ask me if they can do something? If you thought that when you read that list, perhaps you need not worry so much about saying the wrong thing. It's all food for blog.

P.S. Movies:
The Campaign (Will Farrell). Funny.
Cyrus (John C. Reilly). Well-done in a way, but not funny.
Premium Rush (Joseph Gordon Levitt). OK. Fun.
To Paris with Love (crap in spite of having John Travolta in it.)
The Other Man (Liam Neeson).

Thursday, December 27, 2012

The End of Your Life Book Club

Balinese motorcycle-riding
goldfish salesman
Eat, Pray, Love notwithstanding, and in spite of having been here before, I had forgotten what a spiritual, healing sort of place Bali is. And how beautiful it is, that there is art everywhere. Also little offerings, on doorsteps, and sculptures and "family temples".

Had an excellent lunch or dinner or breakfast, whatever it was, yesterday. It involved excellent fresh spring rolls, tofu with peanut sauce...I don't think there will be any problem getting healthy vegetarian food here.  Last night I had a coconut, lime, mint, and lichee juice. They don't add sugar to the fruit juice, yay! Only frustration, and it was a big one, was that a new sim card failed to work in the phone that I pretty much specifically bought for that purpose. Candradasa gave me a few tips so going to try again today.

Cull brought me a book The End of Your Life Book Club by Will Schwalbe. It's great for literary types such as us. Here's something on page 23 I was struck by (while wide awake at around 4am this morning):
Everything would be all right, everything would be possible, anything could be salvaged or averted, as long as we all kept running around. 
At Warung Schnitzel
He quotes a lot of other books, literary and otherwise. One of them is The Etiquette of Illness by Susan Halpern. His rendition of the advice from that book:
  1. Ask: Do you want to talk about how you're feeling?
  2. Don't ask if there's anything you can do. Suggest things, or if it's not intrusive, just do them. 
  3. You don't have to talk all the time. Sometimes just being there is enough. 
His mom had pancreatic cancer.

I'm sitting on our porch in front of a super green garden. It is overcast, the hum of insects is constant. A fly is walking around this screen. Roosters crow all night. We're telling ourselves we should go out now (9 am) before it gets too hot, but we're still sitting here...




Tuesday, December 25, 2012

Some more letters

White Tara, symbol of wisdom
and long life
I never know whether to include people's names, so this time I left them off. Here are some notes I've gotten that made me feel happy. As you read this I am hopefully on my way to Indonesia.


You who are so strong and real and original. I love your creativity and being with you has helped me be more true to myself, I think this is one of the greatest gifts you have given so many people.


Thank you for your brave words and giant heart.
I, of course, have been following your blog like butter on bread.
What a ride this is for you and all who love you!
The sadness I feel goes deep,
I can only imagine the depth coming from your even closer people,
and yourself.
I wish I were there to spend as much time with you as possible.
I want to come.  I don't want to overwhelm.
In light of Dawn's ordination in February I'd like to come for that,
but it might not be a good time to be able to spend with you.
Thinking of January also.
I wanted to check in with you and see how your feeling about visitors.
I have this image of people flocking to you like ravens in this time.
Lastly,
I love you.
And it's true I feel more open to say that because there's possibly few times left for me to say it.
This makes me stop and ponder those words and the people I love, and don't tell.
Death brings such reflection,
and grief
and depth.
Keep writing, keep laughing, keep crying


You're on my mind and in my heart in larger ways than I could ever describe in words. I love you.


I have always liked being with you but now it seems like our communication is clean and deep and meaningful.  And you look beautiful to me, the eyes say it all, and there is truth and sadness and love in those eyes.

My pharmacist once told me that I was the healthiest sick person he knew. and now I think that you have gone much farther down that graceful, positive, challenging road and I am watching, learning so much from you!


The Complete Embrace seems like an amazing title for your book!


I feel something I can't name. A tenderness perhaps. As if I'd just want you sitting on this sofa with me so I didn't have to say anything, but could just look into your eyes and feel and know that we are the same. That our awareness is shared...that essence of you that is in me will never die.

I rejoice in watching you die before you die. In the presence you bring to this final adventure. I hope I see you embodied again, but if not, I'll treasure every last fragment of memory, images and you that lives on until this body one day also dies.

Monday, December 24, 2012

Disarming bombs vs. bodily scans

Edgewood Park
Watched Frankenweenie and The Hurt Locker recently. Both featured fairly central themes of death and love. One between a boy and his dog, and the other between a man and something about the act of defusing bombs. Interesting the different ways one may face one's mortality. My way lately has been relatively abstract: mostly impressions on a screen.

I am enjoying being alone in my apartment since Saturday. Spent hours last night on the 17-page questionnaire for a potential phone consultation with Dr. Block in Chicago. (I answered all the questions, but wonder why he cares what kind of dental floss I use!)

It's shocking how much my eyesight has deteriorated in the last, say, two weeks. I will need to get glasses when I get back.

I find getting ready to travel kind of overwhelming. I always have, but it's worse now because I have so much more sick person gear to bring with me. That's why I'm writing this instead of packing. In any case, leaving for Bali tomorrow. Where is my passport?

Saturday, December 22, 2012

The Demon Alcohol

Shiva and Avalokiteshvara don't seem to be
on speaking terms. Do you know which is which?
I think I haven't felt well, possibly, because I drank a glass of wine last Friday. I sometimes get ill a few days after I drink alcohol (no matter how little or what kind.) Gravely voice, my mouth totally parched, very thirsty, and completely knackered. I slept until 2pm and feel better. Might be time to get back to my three-things-a-day rule. I haven't been resting enough.

Many errands yesterday. Got my eyebrows - they were starting to resemble caterpillars - waxed, which was astonishingly painful. Tried to get my car looked at (emissions light on but not blinking, probably not a big deal). Also went to Kaiser to get my records forwarded to Dr. Block in Chicago. I figure if I do a phone consultation with him, I'll want to do it soon after I get back from Bali. There is also a 17-page questionnaire to fill out.

I asked the Patient Advocate what benefit I might be able to expect from doing a consultation with Dr. Block:
1.700 year old camel
The benefit from doing all the paperwork is that it gives us the entire picture of what you have been through and also they can make recommendations for things you haven't had yet that may work. If you do a phone consult, Dr. Block talks about many things like conventional considerations, off label considerations, suggestions for different monitoring, scanning, labs, and molecular testing. He also talks about integrative treatment options, overseas and experimental considerations, and recommendations for supplements, physical care components, and other things as well.  
People come from all over the world to get advice, and learn about different supplements, treatment options etc. They take this information and some continue to do treatment locally. Others come back and forth. Whatever works best for you, works for us :)
So that seems all right. I don't know where the line is is between realistic optimism and chasing down snake oil. Or, put another way, accepting death without being resigned to it. Where is the point at which a plummeting quality of life becomes not worth living? At what point does the search for medicine become a distraction? I have no answers.

I know I'm supposed to be optimistic, but I am not. I also do not believe it changes anything. After all, when I was first diagnosed, I was not hopeful, and yet I had a complete response to treatment. Then I was pretty pretty optimistic when the lung mets were found, but that ended up being groundless. However, should everything change, that would be fine. I can't bring myself to count on it. It's better for me to prepare for death, then all the life and love that happens is a bonus.

Photos are from the Asian Art Museum.

I am at the Westin Saint Francis on Union Square with Julie and 13 teenaged girls, for Morgan's 16th birthday. 

Friday, December 21, 2012

Brick Shithouse

Can hardly wait for compliments
on my massively developed
cerebral cortex
Watched the rest of Little Big Man tonight. For such a silly movie it does get really sad. Then an hour of David Attenborough's Madagascar that Dhammagita sent. Wonderful.

I have been breaking my three things a day rule. Every day. And sleeping a couple of hours less than I usually do, but it seems fine. Not doing a lot of napping either. I have the energy for it I guess.

My eyes have gotten really crap in the last few days. I can't see anything unless it's pretty much cross the street (where by the way, Tong and I saw a raccoon recently.) I wish I could get more suitable glasses before leaving town. I can hardly read what's on my phone.

I won't be available much until after Dawn's Public Ordination on Feb 9. However if you are thinking about visiting or have some other question for me, please contact me directly. You will know by reading this blog when I am weak and having a hard time breathing - that will be a different matter. For now please remember this very important and up-to-the-minute fact:

I am alive, and still built like a brick shithouse.




Thursday, December 20, 2012

Just the facts, ma'am

Compare the nodules. Left panel is from Oct 18.
Right panel is December 10. 
Lisa Kee, Padmatara, Julie and I met with Dr. Nelson today.

The best case outcomes for chemotherapy: The ideal is that there are symptoms and the chemotherapy relieves them by shrinking the cancer. If there are currently no symptoms, chemotherapy would delay the symptoms developing. She said she didn't think chemotherapy was worth it if it only slows progression. I might try it, until it starts to suck, I don't know. She can give me ones that are known to be better tolerated. They won't necessarily work any worse than anything else!

A different view. If you compare at around 10 o'clock
from the trachea (black hole in the middle)
you can see lymph nodes getting much bigger.
My genetic markers:
  • Negative for HER2. 
  • Positive for EGFR immuno-histo chemistry
  • TBA for EGFR mutation.
If the EGFR mutation test comes out positive, she will probably recommend a drug called Tarceva (doesn't cause hair loss in case you're wondering.) If negative, then possibly CPT-11 combined with Cetuximab. She's going to call Rebecca Brooks (the UCSF gyn onc I saw in February for a second opinion who specializes in studying metastatic disease) and see if she has any ideas. The info I had about Kaiser only being able to use FDA approved drugs isn't quite right. Dr. Nelson said everyone has to use drugs approved by the FDA, except clinical trials. So looks like getting treated at UCSF would depend on doing a clinical trial there. So far we haven't found any anywhere.

I have written to Dr. Block's place asking what the potential benefits of consulting with them might be (since my insurance won't cover being treated by them, and Dr. Nelson doesn't think it's a good idea to get treatment in a place I don't know anyone.) Also, Nancy's going to research a drug used for adenocarcinomas in a 2005 clinical trial called RAV12.

Doc Nelson's shoes
and my finger.
They're around the same size
Other possible drugs she mentioned: adriamycin, doxol, xeloda, temsirolimus, sunitinib...

Median metastatic survival time is 9-12 months.* (It's been six since we first found out about the nodules.) The only part of the meeting that was intense for me was asking if I would eventually suffocate. She said morphine works well for dealing with shortness of breath. I will talk to Carol the social worker about hospice care, etc. Signs that it is nearing the end include getting weaker and fatigued. She also pointed out that I will know when time is getting short.

She said cancer patients are more prone to getting blood clots on planes, so need to make sure to stretch on the plane.

* Realizing I don't really know what those stats apply to. Overall cancer? My kind of cancer with or without treatment? And I forget what median means....

Remember these kids? They are great.


Wednesday, December 19, 2012

The profound lesson of reception

Mission street
I am working on some medical inquiries suggested to me by Misha. More on that later.

Jim, the guy from the Gay Buddhist Fellowship, was a delightful lunch companion at Osha Thai the other day. He is a hypnotherapist. Of course he helps a lot of people quit smoking, etc., but he has also worked with people who are dying and afraid. I asked him what he does with them. Not sure how he does it of course, but he somehow shows them how to separate their consciousness from their body (so that they can see their body from above.) He helps them have an experience of themselves that is different or apart from their bodies. He said they're less afraid after this, or not afraid at all.

My first thought about this was, Oh yeah, convince someone that there is life after death and they lose the anxiety, because they then think that they will keep on living. But there's more to it than that. I think it's more that we have solidified (or in the excellent words of the SF county jail: thingified) things-as-they-are-now to a degree that we are cut off from a different perspective, that there could be some other kind of reality. We can't imagine there is anything outside the box we are sitting in, so we cling to the walls of our box. (A favorite Chinese proverb: The frog in the well cannot speak of the sea...)

The same day Jayacitta (in London) and I talked on the phone about relaxing around the grasping or 'reality'-creating mind. The way she talked about meditation made me feel like we were working with exactly the same things. The main difference is that when I try to know things that can't be known, or cling to some form to which I want to stay affixed, it is way more painful these days than it was before I had cancer. I'm very much trying, and sometimes able, to accept things as they are, and not with resignation but with creativity and love. I referred to this once in a talk I gave as 'the complete embrace.'

I also don't see death as a stopping of everything. Rather, I see it as a big change. To see it as a final end sounds kind of crazy to me. (But then again, who the hell knows?) Since I was a child I have had a strong sense of having been around a long time. I have a sense of having done all the sorts of things that both men and women do, many, many times. And I don't just go around saying that, because many people think you're bonkers when you say it (even other western Buddhists!) or that it's just some fantasy you constructed to quell your fear of the truth. But it doesn't make me feel better. It's not even a belief. Intuitively and deeply, in light of my own experience, it simply seems more plausible to me than other scenarios. As if everything that happens in our brain can't be taken at face value unless science has proved it. My mind has been around, in one form or another, longer than science.

I find it astonishing how not-sad I am lately. It's important that I don't expect that of myself all the time, but damnit I am enjoying it. I also feel very healthy, very much alive. Out with a bang not a whimper I suppose.

Walt Whitman, from Song of the Open Road:
You road I enter upon and look around! I believe you are not all that is here;
I believe that much unseen is also here.

Here the profound lesson of reception, neither preference or denial.

Tuesday, December 18, 2012

Benefits of Cancer II

  1. People (mostly, but not only, my family) give me money or want to give me money.
  2. I can do whatever, and no one gets mad at me. 
  3. I hear, and say, "I love you" approximately 25x more often than I used to.

See also Benefits of Cancer I.

Monday, December 17, 2012

Canceling everything +

First iPhone photo,
(however, happiness not apparent)
The last several days I have been feeling happy. In a way, I probably have less to worry about than you do!

Almost all the 2013 travel plans I listed toward the end of the post called Heartache, I have canceled. After I get back from Bali in mid-January, I'll be focusing on Dawn's ordination for at least a month. Very happy about this. Her public ordination ceremony will be at the SFBC on Saturday, February 9.

If I am able I may go to New Orleans week of March 24 with my sisters, Julie, and Jeff. Paramananda may be coming out in early April. If you'd like to come and visit me, end of Feb/first half of March may be a good time. I don't know how much energy I'll have for visitors but I'll do my best.

Misha is going to make me an herb formula, don't know if she'll get to it before I leave. She's going to have it pre-made so I don't have to boil mountains of nasty leaves and bark, etc.

I'm looking forward to being warm for a few weeks. Thinking about getting a small tattoo in Bali - over my heart. Words or a picture. (Jayarava's post, A Real Buddhist Tattoo, put me off the idea of using Sanskrit words!)

I have an appointment with Dr. Nelson on Wednesday. Seems like I'm starting to cough a bit more, and if I take a deep breath, it hurts a tiny amount.

Vidyadevi has agreed to edit my memoir. (She's edited most, if not all, of my favorite books by Bhante.)

Here's a poem by Buddhist friend Leslie (McCormick) in Colorado:
It’s Not Funny
She faces the words stage 4 with a shiny red nose,
clown shoes on, and dukes up.
Cancer may win her body,
but she’ll be damned if she lets it take
the shoes.

Saturday, December 15, 2012

Things I'd Be Happy to Get Help With

palliative |ˈpalēˌātiv, ˈpalēətiv|

adjective

(of a treatment or medicine) relieving pain or alleviating a problem without dealing with the underlying cause: short-term, palliative measures had been taken.

The other day I had a session with Carol Gerstein, the palliative care social worker. It was good. The theme that eventually emerged was 'needs'. I'm not used to having needs, or at least I'm not used to expressing them. I'm used to being 'fine'. Part of my experience then is just letting needs be there, mine and other people's, and letting mine be known when that is helpful. They don't have to be the same and they don't have to be in conflict. It's all super basic, but new to me in the situation I now find myself in, navigating this mysterious process I'm going through, and that other people are going through in relation to me.

Since the meeting with Dr. Nelson last Friday about the x-ray results, my days are full, vivid, a roller coaster ride of contentment and sorrow. Again, I am adjusting to my current situation. I often wake up feeling happy, and my time with people is very sweet and poignant, no matter what is being said.

Fridge magnet wisdom
There are lots of things - well, it's been greatly reduced so let's say a few things - I would like to do. I don't know how long I will be alive enough to do them. Paramananda suggested that I do the things I want to do and not worry about whether I have enough time to do them, which sounds good. My priorities are to ordain Dawn and spend time with her, and to produce a memoir of the last year/this blog. Getting rid of a bunch of stuff would also be grand. Of course I will be spending a lot of time with other people besides Dawn, too.

BTW, not going to Hawaii anymore. I'm meeting Cull in Bali on December 25, back January 12.

I added a Helpful Things tab if you want to check out ways you can help.


Friday, December 14, 2012

More Full Days

Got around 6 hours sleep last night at Julie's. Then Iyengar again with Karunadevi, this time, hella painful in my hips! Lunch with Prasadachitta. Skype with Paramananda. Then Lisa Kee and I got massages at Relax Feet and hung out for a while. Walked her back to Zen Center and met Mike for a glass of Tempranillo (tem pran EE yo). So knackered.

I wish I could post a photo but I don't know yet how to get them from my iPhone to here.

Full days


Today, hours in an AT&T store with Jules, reike session with Tania, phone call with Sanghadevi (my preceptor who ordained me in 2001), organic Thai dinner with Julie and Danamaya. Days very full and mostly wonderful, too much to get into details.

Yesterday, Misha and I talked a bit about alternative treatments and how quack-ish they can seem. I complained that people don't give realistic info about what they can do. She said she figured the reason they don't is that many people won't go to you unless you say you can cure them. For example, she doesn't tell Hep C patients that she can cure them, so they go to another acupuncturist who says they can take away the virus. Anyway as I wrote the other day, Misha thinks it's worth looking around for options, trials and second opinions, especially from UCSF, Keith Block, and thesecondopinion.org.

But the folks at thesecondopinion.org can't help. They say:
...we just don't have docs that deal much with cutting edge treatment or clinical trials...would be a waste of your time. 
They recommended some doctors at UCSF and Stanford who I could consult.

I have called Keith Block's place twice. They haven't called me back.



Thursday, December 13, 2012

What hope in this context means


Yesterday: Breakfast and meditation with Karunadevi, skype call with Trebor in Berlin, a gentle Iyengar class which felt good on my sore hips, and an hour meeting with Misha...and watching Homeland (second to last episode), and the movie Ted.  The main thing I took away from the meeting with Misha was that she was hopeful or at least suggesting the possibility that we could find some kind of treatment (not necessarily chemo) that might prolong my life.

Apparently Kaiser will pay for someone to get treatment if they can't provide it. Misha suggested that I convince my doctor that I need to go to UCSF, which has a gynecological cancer clinic and does experimental treatments. Kaiser can only use approved treatments. I also need to call Keith Block and The Second Opinion folks again which I will try to do this morning. I realized that the hope that everyone says you must hang on to when you have cancer is...well I suppose the opposite of I'm not going to do anything proactive anymore, just going to wait to die, which should be soon. Perhaps that attitude is appropriate at some point, but not when one is feeling healthy like I am. It reminds me of the idea of 'learned helplnessness' which wikipedia defines as "the condition of a human or animal that has learned to behave helplessly, failing to respond even though there are opportunities for it to help itself by avoiding unpleasant circumstances or by gaining positive rewards. Learned helplessness theory is the view that clinical depression and related mental illnesses may result from a perceived absence of control over the outcome of a situation." Still, I can't say what the hope is for. Perhaps one can remain proactive while dying.

It also occurred to me that I could start some kind of chemo, and stop when I felt like it wasn't worth it anymore. I had been thinking of it as 18 weeks of chemo or zilch, there might be something between...

Got a reply from Dr. Nelson this morning with a copy of the CT scan report:


----- Message -----
From: CULLEN,LISA D
Sent: 12/11/2012 7:03 AM PST
To: AMY RUTH NELSON MD
Subject: Results of CT scan

Hi Dr. Nelson, 
There was no appointment with you available so wondering when I can get the scan results. Important info at this point for me is 
-how to deal with the pain in my chest, which is not intense right now, more like an ongoing heartache, but presumably will get worse.
-wondering what my decline is going to look like and projected life expectancy (I know those numbers are often wrong)
Possibly open to chemo but these other questions are more at the forefront for me now.
Cheers, Suvanna 


To: Lisa D Cullen
From: AMY RUTH NELSON MD
Received: 12/13/2012  5:38 AM PST

Ms. Cullen - 

I have attached a copy of your CT scan report. There has been progression of the disease in your lungs and you also have some lymph nodes in the middle of your chest. None of the findings are "pressing" on any structures that warrant proceeding with radiation right now, but I do wonder if the "ache" is related to the progression. There is no cancer apparent in your liver, adrenal glands or other areas. The bone findings are harder to interpret, as the sclerosis mentioned on the report, can be from bone healing. I have included the report below for your review. 

It is always hard to predict how a person will do, particularly someone as young and otherwise healthy as you, and with you looking as good as you do right now. I, though, suspect that over time you will become weaker and that cough / shortness of breath could be issues. If you do not do chemotherapy, or do not respond to chemotherapy, you may benefit from radiation. Your pace of disease, though, does worry me as there has been significant progression over a relatively short period of time. Thus, I am concerned that survival will likely be measured in months to maybe a year. But, please to not start a "count down" as this is just an suspicion. As time goes on and we work together I will certainly be honest with you as to what I am seeing. Also, I think you will be able to judge what is going on and have a good sense of when time is becoming much more limited.

Unfortunately, I am out of the office until Tuesday, but I can ask Anna to set up a time to talk, either in person or on the phone, when I return.

- Amy Nelson, M.D.



CT OF THE CHEST, ABDOMEN AND PELVIS

** HISTORY **:
Vaginal adenoca to lung. ? progression. Lung nodules enlarging,
? new site of disease

** FINDINGS **:
Technique: Axial images were obtained from the lung apices to the
pubic symphysis after IV contrast administration. Comparison is
made with 03/28/2012.

There is interval increase in the size and number of pulmonary
nodules. For example, a lobulated left upper lobe nodule
currently measures 41 x 32 mm, previously 20 x 16 mm. A right
middle lobe nodule measures 21 mm, previously measuring 8 mm.

There is new mediastinal and hilar adenopathy with nodes measuring
up to 20 mm in the right pretracheal region, 15 mm in the
prevascular space. There are no pleural effusions. There is no
axillary adenopathy.

There are no new hepatic lesions. There is no change in a well
circumscribed 11 mm low attenuation lesion in the inferior right
hepatic lobe. The spleen, pancreas, and adrenal glands are
unremarkable. The kidneys are unremarkable. The aorta is normal
in caliber. There is no adenopathy and no evidence of free fluid.

There are new sclerotic lesions of the left inferior pubic bone.

Dose: CTDI: 16.7 mGy
DLP: 1113.9 mGy-cm
Phantom: Body 32

In compliance with California state regulations, detailed dose
information is available and can be accessed by requesting the CT
images through the Release of Information (ROI) process. Please
contact your local business office or Hospital Information
Management office for details.

** IMPRESSION **:
1) Marked interval increase in size of several pulmonary nodules.
Slight interval increase in number of pulmonary nodules. New
mediastinal and hilar adenopathy.

2) New sclerotic lesions of left inferior pubic bone.

Tuesday, December 11, 2012

Picking Turnips with a Step Ladder

I looked up euphemisms for death on you-can-be-funny.com. The title of this post is a fave. "Baste the formaldehyde turkey" - also charming.

Pacifica with Candradasa,
two days ago
"Top Five Regrets of the Dying"* was written by an Australian nurse who spent several years working in palliative care, with patients in the last 12 weeks of their lives.

"Ware writes of the phenomenal clarity of vision that people gain at the end of their lives, and how we might learn from their wisdom. 'When questioned about any regrets they had or anything they would do differently,'  she says, 'common themes surfaced again and again.' "

To wit:
1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.
2. I wish I hadn't worked so hard.
3. I wish I'd had the courage to express my feelings.
4. I wish I had stayed in touch with my friends.
5. I wish that I had let myself be happier.

I don't have any of those regrets. I suppose I regret not staying in touch with some people I've met over the years, traveling, etc., but I don't think that'd be at the top of my list. Let's see...
  1. I wish in the fairly distant past I had preferred love interests based on kindness and humor rather than height and looks. 
  2. I wish I hadn't smoked cigarettes. (Probably unrelated to my current predicament, but still, seems totally horrible from here.)
  3. More recently, I wish I hadn't complained as much as I apparently did when I was director of the Buddhist Center. (Seems to be most of what some people remember about the eight years I was director, which makes me sad.) 

That's all I can think of, though there are possibly myriad minor regrets. In any case, all of this was the best I could at the time, and besides that everyone makes mistakes, so why regret? But one does. I'll try to let it go before before I get in the horizontal phone booth. (I find these expressions very funny, I hope you do, too.)

Currently I don't have an appointment to talk to Dr. Nelson, so I don't know what was found on the CT scan, though I have my suspicions about it. When I called, there were no appointments available, or none available soon. I sent her an email this morning asking about the results of the scan, and one to Dr. Patel (radiation onc). Dr. Patel replied that unless there was shortness of breath or pain coming from a very specific location, it wasn't worth destroying lung tissue with radiation. So I guess I'll wait to hear from her (she would have only gotten the scan results today.)

I was thinking about Misha telling me I think last week that my 'upper burner' (basically, the heart) pulse was very weak. (This does not mean in western terms that my heart is weak. Not sure what it means actually, but obviously she noted some kind of serious vitality issue in my chest.) I have a consultation with Misha tomorrow.

Talking to any of my sisters is totally fucking sad, as are many other interactions. That's the way it is now and for the foreseeable future.

I came here (Cafe La Boheme) to write, but much of what I've done so far is look up physician-assisted suicide, euphemisms for death, and answer some emails. I feel confused, though writing this felt good.

*From
http://m.guardian.co.uk/lifeandstyle/2012/feb/01/top-five-regrets-of-the-dying


Letters I've gotten

Impermanence, Santa Cruz mountains
Below are some emails from folks near and far. I went ahead and included the authors' names. (Let me know if you want me to take your name off.)


I'm sad too and have been thinking about you non-stop, including the second I woke up.  Many of my thoughts are puzzlement, like what is the idea of life and what does it all mean.  My curiousity makes the idea of death a little easier I think because I've always been so curious about it.  I have such vivid dreams that some I've even mistaken for reality at times, so if I live in dreams will I live in death?

And then there's the closeness I still feel to loved ones who are gone.  I know it sounds crazy so I don't mention it to many, but my grandma for instance doesn't feel gone to me.  I know she's dead but I still feel like I have a current relationship with her and it's actually better than the live one because none of the irrelevant shit matters anymore.  It's just a lot of love and humor, etc.  I feel the same way with my other grandma too, and she no longer has the memory problem she had when alive.  She's at her prime and always right behind me.  I can hear her laugh as well as I can hear any living person.  So, although this makes me sad and not want to see it happen, I don't feel like there will be a total severing of all of the good.  The bad will sever.  No more illness but the good things like love don't stop for me, and they don't appear to stop for either of my grandmas either, unless I really am crazy.

I still have hope that healing will happen, however remote the chance, and I also have hope for no suffering.  I read your blog last night and see that you've had some chest pain.  I once thought I might be having a heart attack and found that it was mild pneumonia instead.  If your lungs are causing pain I don't want that to get worse.
-Jeff Perrin


I’m impressed by the amount of ‘books to throw out’ you got through yesterday. I cant seem to do more than about ten at a time – and that’s if I’m lucky. But then I guess I don’t have death by cancer concentrating the mind, or a lot of people being sad about me to want a break from...As this is an email I could possibly convince you that I’m not sad. But that would be too weird and anyhow you’re too smart to believe it. Although actually what I feel most is just a lot of love. -Dhammagita


I was at the last day of the women's National Order Weekend. I got up in front of about 90 [women Order members] and let them know, asking them to send you metta. They were understandably concerned and many told me to give you their love. I don't remember their names...

...I think I may have already told you this once or twice before, but THANK YOU!  Viveka taught me to meditate, but YOU taught me to LOVE. You taught me how to be open to my heart, let it be its ugly self when it needed to. Let it live its own life within me, mysterious and deep. Let it guide me, let its love deepen and grow and engulf everyone. Thanks for your smiles, laughter, honesty, and love. You exemplify what we are all trying to achieve. You are an inspiration to me.

I don't know about what happens next but in case it might somehow have an effect I've summoned my mother's spirit to your side to guide you through this. Maybe it just makes me feel better. In a way you kind of remind me of her, you have the same sense of humor, I think you would have been friends.
-Singhashri


I know you have a lot of people around you now and am envisioning you surrounded by love and support, and spaciousness as you need it. If you ever need someone to listen to you, the good and the bad, please don't hesitate to let me know and if you think it would be helpful I'll be there. It's terrible to be so sick, and to feel alone is it is horrible. You are not alone, even while at the same time none of us are walking in your shoes. I'd offer upbeat distraction but I'm actually terrible at that. I love you. So many people love you. I hope that is some comfort.
-Mary Salome


I read the news about your cancer in your lungs and not sure what words would bring the most comfort except you are showing us day by day how to be alive and how to be sick and how to keep laughing and crying and hugging and singing and everything that is fully wonderfully human you, dear Suvanna.
-Lisa Kee

Sunday, December 9, 2012

Climbing Mount Everest

Here is what the report that Dr. Nelson gave me said:
**FINDINGS**:
Interval enlargement of bilateral lung nodules, largest one in the left upper lobe above 42mm in size. Heart size normal.  
**IMPRESSION**:
Enlargement of bilateral lung nodules.
Result coded as action required. 
I realized today that a big factor in the meeting with Dr. Nelson was her anxiety.  She seemed truly alarmed by my x-ray. The last CT scan was October 18, the x-ray was December 5.  47 days.

I spent much of yesterday selecting books off my shelf to get rid of. Probably around 40 books. And a few more this morning. It was relaxing. Time alone on a project can be very nourishing. Sometimes I need a break from, among other things, other people's sadness.

What does it mean to "never give up hope"? That's the consistent cancer advice. Does it mean never give up hope that you'll be cured? But at what point does hope merge into denial? Maybe it simply means despair isn't good.

I seem to have an extremely rare, probably incurable at this point in time, aggressive cancer. Is it separate from my body? Is it an accident, or wrong? Some Buddhist texts use the word "adventitious." Cancer could even be described as an "adventitious defilement" of the body. But the cancer is now part of my body. My body produced it. Can there ever really be an accident?

I was also thinking of the difference between thinking "as if" you're going to die in a year, and planning one's life around actually not being around in a year (or less). Apparently, neurologically, imagining something is almost the same as experiencing it. Yet, these two different varieties of imagination feel VERY different!

And what about living as if this day were your last? The idea is that you might do something radically different from what you were already doing. But what if it's not like that? What if it's not communing with the lemurs in Madagascar or climbing Mount Everest. What if what you wanted to do was walk around for a while somewhere nice?

What do I want to do (or not do) in the next year? Get rid of most of my stuff? Move to Oregon where they have a euthanasia law? How many retreats? I don't know. The news has opened a box of questions about how I want to spend what remains of my life. The open box of questions feels very freeing in a way. No answers, so far.

Blood tests, CT scan, and appointment with palliative care social worker tomorrow.

Emotions go to my chest in the same way they always have, it just hurts more now.

Saturday, December 8, 2012

Heartache

Nimbus Cukurcuma Hamam II, 2012
by Berndnaut Smilde
After the meeting yesterday with Dr. Nelson and sad falafels with Tong, Jules and Candradasa, I went to the awesomely named Relax Feet for a massage. I had one coupon left that Kathy got me over the summer, but I forgot to bring it, but they only cost $30 anyway. The lady badgered me into spending $180 for three months. Ordinarily I won't be badgered. But it was a great deal! And why not live a little?

While feeling the contact with my body and the slow relaxing, images and thoughts appeared. My mind went to my chest, how it hurts like grief, like a regular heartache, but is cancer. So finally it is heartache that will kill me. Again, I feel like no one, doctors, friends, me, was expecting it to go this way. But it keeps going. For the last few months, the possibility that things might go in a different direction seems to get more and more remote. She said some cancers are resistant to treatment, like mine, and pancreatic. I didn't know mine had that reputation. Or maybe she was just talking about mine in particular.

The battery in my recorder was low, so while it acted like it was recording the meeting with Dr. Nelson, it wasn't.

Note that the tumors are
along the central line.
Big one in upper right on photo.
An x-ray is a less specific and less toxic way than the other scans to get a feeling for how things are going. The nodules are obviously growing. The largest one in the left upper lobe is more than 42 mm (1.7 inches). I am getting a torso CT scan Monday morning which will give more specific info about size, and also see if anything is growing elsewhere (bones and liver are classic favorites.) Oh yeah, she also wanted to see if any airways are on the verge of being blocked. Conceivably I could get two weeks of radiation before going to Hawaii (Dec. 27).

Recently I looked up the questions Renee, the SSF social worker, advised me to ask the oncologists. (That post is from March, here.)
  1. Do you foresee I'm always going to be on chemotherapy?
  2. If I don't do more treatment, how long would I live?
  3. RE more chemotherapy - What is it buying me? What if I don't do it?
  4. What would a decline with my type of cancer look like?
I would add: What is the hoped for benefit of chemotherapy and what are the other possibilities? I wish I had asked Dr. T. that. I did ask Dr. Nelson #2, which I wrote about in the last post. Next time I need to ask #4, although I think I know the answer - fatigue and shortness of breath, which I'm thinking must eventually lead to suffocation. Where else could it lead? Or maybe they have some way of helping one leave this world in a more pleasant manner.

Dr. Nelson suggested not being away for more than two weeks, primarily so they can deal with symptoms when they emerge. Here are my current travel plans. I'm going to have to parse out some of them in smaller chunks, and cancel others. For example, two months in the UK in the fall is too long.
Dec 27, 2012 - Jan 10, 2013: Hawaii 
February - April: Home. Eight week MBSR course starts Feb 6. Class at city college?
May 3 - June 9: NH, NYC, Spain, LA. [Co-lead retreat at Aryaloka in New Hampshire + practice day. Visit New York. May 24 - Jun 5: Two weeks of Dawn's ordination retreat in Aragon, Spain. Jun 5-9: Generation X Teacher's Conference at Deer Park monastery in So. Cal.]
Rest of June and July: Home. Perhaps Montana around July 4. Perhaps leading a "Mindfulness in the Wilderness" retreat in Montana!
August 2 - Oct 2: Scotland, travel, and monthlong retreat Devon England. [August 2-9: Co-lead improvisation retreat at Dhanakosa in Scotland. Possible Aug 8-12: Order convention at Wymonham. Aug 21: 50th birthday. Sep 4-Oct 2: Co-lead monthlong Buddhafield retreat with Paramananda in wet field in Devon, England.]
I feel very healthy and energetic (with minor chest pain and some radiation-reduced functionality in my pelvis). All the complimentary medicine, walking, working with my mind, shamanic healing, eating no sugar...did it help anything? It makes me feel good anyway. I was thinking yesterday, My body is finishing up with living. The cancer is incredibly robust.

In any case I need to have a plan, so I'm planning to live for around another year. After that is just bonus points. Or maybe I'll start living on kale smoothies and that will cure everything, but it's hard for me to believe anything remotely like that anymore. I will call Keith Block's place in Chicago on Monday and see what they say...


Friday, December 7, 2012

Uncool Update

Here's the email I just sent to my family. I will write in more detail later.


I met with Dr. Nelson today.

The nodules in my lungs appear to have grown significantly since the last scan. I have been getting (minor) chest pains, though I couldn't tell if it was simply emotions (the feeling in the chest is exactly the same.) Looking at the x-ray showed tumors where I have been feeling pain.

She asked me if I was open to doing more chemotherapy (keeping in mind that they will essentially have no idea whether it will work, and "working" doesn't mean getting rid of the cancer, it means keeping things the same or maybe a bit smaller.) I said the fact that there was no hope of chemotherapy curing it that is the biggest deterrent for me at the moment, not sure how I'll feel later. I asked her how long she thought I'd be likely to live getting no further treatment. She said months to a few years, but there will be more specific info after the CT scan, which will give more specific info about size (how much it's grown since the last scan) and also look for cancer in my liver which apparently is "another place cancer likes to go."

I'm getting a CT scan Monday.

All in all, NOT great news. I'm off to get a foot massage!

Thursday, December 6, 2012

Sitting with uncertainty

Overcoming vanity by posting
this pic of recent SFBC fundraiser.
I've missed a few movie updates: In the last few days I have seen Cloud Atlas and Safety Not Guaranteed. Cloud Atlas, the book, was one of my all-time faves. The movie was a decent attempt at an epic project.

I am obsessing over a calendar I'm making in iPhoto. It's killing my shoulders.

Here are some books I've gotten from the library, recommended in different places, though I haven't looked at them yet:

  • How to Live Between Office Visits, Bernie Siegel, M.D.
  • Choices in Healing, Michael Lerner
  • Chicken Soup for the Soul: The Cancer Book, Jack Canfield, et al (freebie at Art for Recovery)

This Sitting with Uncertainty discussion page is part of the Commonweal website, a local place that offers six retreats per year for people with cancer. They charge $2,500 for a week's retreat. (I remember when I first heard that, I thought it was expensive!) Anyway the discussion is interesting, not unlike what I am tending to write here.

I found that page because I was checking out Kokolulu Farm and Cancer Retreat on the Big Island of Hawaii, a place mentioned by Misha but that offers something way beyond what I am looking for and for that reason way beyond what I am willing to ask someone else to pay for! (I applied for a scholarship but I was unclear as to whether I got one. In any case, the rates they were quoting were close to 1,000/day.) Wow, there's something kind of horrible about talking about money. Anyway the people there are super nice.

Here's someone else's interesting cancer blog: Bonnie Gintis. After a chat with Candradasa (visiting from New Hampshire) yesterday I realized I should make this blog searchable so more people can have access, which I have done. Anyway, on one of Bonnie's posts she sites a study done by a PhD candidate at UC Berkeley about spontaneous remissions of cancer. Six things were found in those who thrived:
  1. Deepening one's spirituality.
  2. Trusting in intuition regarding health decisions.
  3. Releasing negative and/or repressed emotions.
  4. Feeling love/joy/happiness.
  5. Changing one's diet.
  6. Taking herbal/vitamin supplements.
Panel at Entheogenic Wellness meetup.
Older guy, 2nd from rt., did a cool ritual at the end.
When I read stuff like this I think, What about the people who did these things who did not experience spontaneous remission? What about the people who did none of these things who experienced spontaneous remission? Well. Those people weren't the subject of the study. I do think that a lot of what one hears about cancer is bullshit, though not necessarily on purpose. A friend of a friend drank kale smoothies/ate a lot of lemon drops/____ and was completely cured! It isn't that I'm not happy for these people, I just don't believe that they have complete understanding of what exactly cured them. What if it was actually the radiotherapy they were given, or some combination of things they did or didn't do? And even if they did somehow know for certain what cured them, they're not me.

I went to an "Entheogenic Wellness" meeting and panel recently at CIIS with Lisa S., Candradasa and Jessica. I frankly suspected they might be a bunch of drugged up yahoos. (I'm working on the cynicism, but apparently not very successfully.) Some of it was about the interrelationship between human physiology and plants, and there was some science. However, there was nothing about treating physical disease.

P.S.  My hair seems to be coming in at very different rates in different places, which is fine by me. Main things were the issues with my eyes and nose, which for the last few weeks have resolved. I remain without hair under my arms which is fine.

Wednesday, December 5, 2012

Dr. Patel

Coots of South San Francisco
Julie and I met with Milan (pronounced MILun) Patel yesterday. I remembered how fast he talks. I told him about my current symptoms. One of them is that my heart kind of hurts. I'm not certain it's not emotional, but thought I should mention it.

All of my recurring pelvic troubles are longer term side effects of the radiation. I remember a worksheet with lists of short term and long term side effects. I didn't read the long term column.

When I asked how scarring could go on for so long he said it's not really scarring. It's fibrosis, a late effect of radiation. It means that the fibers stiffen and contract. So I need to keep stretching. It would seem that my hips will now always default to being tight.

He said 1-2% of patients who receive radiation treatment develop cancer in the radiated area in an average of 8-10 years. So lots of cancer treatment isn't curing, but postponing.

He said they didn't do full on radiation in my bones so if it is needed again for pain relief they could do more radiation in my bones. The specific reason they can't do CyberKnife (focused radiation) in my lungs is that the radiation kills part of the lung tissue, so if it's all over your lungs, you could have shortness of breath your whole life.

He said to email him if I have questions about radiation. Such a lovely man.

I just had a chest x-ray.

Sunday, December 2, 2012

Die while you are alive

On the acupuncture table
"Die while you are alive and be absolutely dead, then do whatever you want." -Zen Master Bunan
A thought occurred to me a while ago, and it has reappeared. It's speculation - pure hell for the question mark cancer patient - but there it is. I thought: If I had been sexually active recently, chances are I would not be in the situation I am in. This is because penetrative sex would have been painful, and I would have gone to a doctor, and could have discovered the cancer at a much earlier stage. Which would put me, now, in a much less smelly kettle of fish.

Obviously, it does not help to think in this way. Still, sometimes I can't resist it. It might also be true that if I had never done X, or visited Y, I never would have gotten cancer at all. But then, there is how it actually happened. That's all there really is. Part of me cannot fully get that.

Based on past experience, I expect many will not be able to understand the rest of this post. 

My friend Mike asked me, Do you think it's easier to go through this because on some level you actually want to die? This was a brilliant question.

Angel in Mexico City
From the time I was about ten years old to my mid-twenties, I contemplated suicide during periods of severe depression. That time also roughly corresponds to my drug taking AKA self-medicating years. Until recently the depression I was so prone to had been slowly weakening. It was getting milder and lasting for shorter and shorter lengths of time, sometimes only a few hours. Then when I was about 47, and by some measures happier than ever before, it kicked in again with a vengeance. It was surprising. I could not find a psychological cause that made sense. I figured the origin was either karmic or hormonal (or both!) Long story short, a wise nurse practitioner suggested a low dosage of fluoxetine (AKA Prozac) which apparently helps with several perimenopausal problems including mood swings. And from the first day I took it, those troubles were over. (I have since stopped taking it and am not depressed anymore, probably thanks to medical menopause.)

Going back to Mike's question: Is it easier to go through this because I actually want to die (or at least because I have spent a fair amount of time wanting to die?) Probably. And in ways not related to depression and suicide, I have somehow kept life at arm's length, ready to let it go. I have been jaded in some way, unable to fully embrace life. And I always thought of my resistance to life - my taking or leaving of life - again, probably not consciously, as being my decision. But now the part about having a choice has been removed, because life, now, is obviously in charge, not me. That has made me love and appreciate it in a way that before was mostly theoretical.

Here's my email version of a "disease elevator speech". Everyone should have one! I composed it yesterday when asked about my health by our MBSR venue landlady (Bill and I are offering a course in February). A year ago I had canceled my reservation with her, told her I had Stage 4b cancer.
Currently I am feeling very healthy. The original cancer that I had - and there was a lot of it - is totally gone. I still have stage 4 cancer (metastases in my lungs) which may end up killing me (or not!) but I do not have any symptoms now, just recovering from last round of chemo (which, of course, didn't work!) So again I don't know how long I have to live - but much of the time that helps me enjoy my life, take good care of myself, and love people more, so it's all right. 
I think it's a pretty good summary, although maybe a bit too rosy? For instance, it doesn't always help me enjoy my life, it sometimes fills me with sadness and confusion.

There's only one thing on my bucket list: I want to finish this memoir as a book.

Saturday, December 1, 2012

"A Homecoming" by Wendell Berry


One faith is bondage. Two
are free. In the trust
of old love, cultivation shows
a dark graceful wilderness
at its heart. Wild
in that wilderness, we roam
the distances of our faith,
safe beyond the bounds
of what we know. O love,
open. Show me
my country. Take me home.

Thursday, November 29, 2012

Lifeguard

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

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

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

Tuesday, November 27, 2012

How I am now

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

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

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

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

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

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

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