Friday, September 27, 2013


The Last Post
 
September 27, 2013
 
We're grateful to have had time with Suvanna to say what needed to be said.

We said our final goodbye to her today.  
 
Lots of love to the San Francisco Buddhist Community and all who knew our sister.
 
Kathy, Paulette, and Laura

Wednesday, September 25, 2013

Dear Friends,

We are planning to come together to help each other say good bye to our dear friend, sister, mentor, and woman extraordinaire, Suvarnaprabha.

Please join us

Friday, Sept. 27th  from 1 - 3pm at

Fernwood Cemetery
301 Tennessee Valley Road, Mill Valley, CA 94941
Tel 415-383-7100
(Walking shoes will be helpful as we are walking to her plot up a hill. Leave your Jimmy Choo's behind is what we're saying!)

If you would like to bring a flower to place on her grave, please do.

The Buddhist Center doors will be open to welcome all of you who would like to gather after the service.
San Francisco Buddhist Center
37 Bartlett, Street, San Francisco, CA 94110

Lots of love,
Kathy, Paulette, Laura, Julie, Padmatara









Tuesday, September 24, 2013


Dear friends of Suvarnaprabha,
Suvarnaprabha died at home, with her sisters, Julie, and Padmatara right by her. She was conscious right up through yesterday.  Our hearts go out to all those who are grieving. 
The Center is commencing a 24 hour program of collective practice to support Suvarnaprabha and her community of friends and family in this transition.
TOMORROW, Sep. 25, starting at 6:30 in the morning we will begin an hourly cycle of practice that will end with our sangha night class that runs 7:00-9:00pm
You can arrive at the beginning of each hour of practice, in the morning 6:30am, 7:30, 8:30 , and so on through the day up to beginning at 5:30pm. We'll end with sangha night together from 7-9:00pm and a final transference of merits.
We will practice straight through the day and imagine people joining us in places near and far. 
As there is more news of memorial arrangements we will let you know. Suvarnaprabha has been and is now, beyond description.
With love,
Padmatara and Viveka
After a couple of days of being wide awake and commenting on everything she saw, Suvarnaprabha became much quieter yesterday afternoon, and more sleepy, and now this morning she is hardly communicating at all. She is very weak and can't swallow food.
Laura arrives back tonight, so the four sisters will be together for a little while.
Thank you all for your comments, emails and other communications of support for Suvarnaprabha and those around her. It's good to know you are there.
love, Padmatara

Sunday, September 22, 2013

Things were different again this morning - wide awake and talking a lot. Thought I'd share a snippet as best I can.
- Padmatara

I had crazy dreams, not creepy ones, crazy - I was dreaming - I was at the seaside - but I wasn’t sure if the musicians were real. Ivor Cutler. I’m not sure whether - I suppose it doesn’t matter where they’re coming from or going at this point. 

Saturday, September 21, 2013

Summer Retreat Sunset
Suvarnaprabha seems more and more in her own world, commenting on things that we can't see (though I wish we could).  It is increasingly hard for her to communicate. She seems curious and surprised, but not particularly worried by this. She needs a lot more help as time goes on, mostly from her gentle sisters, and she accepts it now with grace and humor (mostly).
Some people at the Buddhist Center will be organizing meditation and chanting at various times in the next few days - I'll post the information here.
Take care of yourselves and each other.


Friday, September 20, 2013



No literary depth here - just an update:
Things are changing fast for Suvarnaprabha. She has asked not to have visitors for a while - she loves to see her friends but it is very tiring. She seems to be doing what the books tell us she will, going more inward. She sometimes sees things - they call it visioning and it's pretty common - and what she sees is quite lovely - beautiful trees on the ceiling, a bridge with her and her friends looking down at her - that kind of thing. She can still talk beautifully but it is hard for her to think and speak about anything that isn't happening right now. It is very important for her to get this blog published, but it's unlikely she will contribute much more herself. Candradasa and Vidyadevi are working on it.
The hospice nurse visited yesterday, and some of you know or guessed this already, but it seems the difficulty speaking and thinking is not the result of taking morphine, but is just the disease progressing, fatigue, and the natural dying process.
She is surrounded by family and, as has been said many times, more love than it's possible to imagine. She knows you all love her and she loves you back.
Between us Kathy, Paulette, Laura and I will try to keep this blog up-to-date.
All the best to you.
Padmatara

PS She has very little appetite too, just a bite or two of food now and then.


Thursday, September 5, 2013

How much life?

Changes in the last week or two such that I'm not sure where to begin. On monday Mary Jo suggested i take more morphine and ibuprofen for pain and coughing, more regularly rather than 'as needed'. By medical standards it's still "not that much."

So I did. Result has been no pain in my hip bones and knees, and less coughing. And dozing in and out of sleep all day. I'd resolve to finish my paperwork each day this week, but I simply haven't had the mental ability. Laura - bless her cotton socks - was helping. 

Part of the cause of all the sleeping, too, is that typing on my laptop in bed is so un-ergonomic that it was causing new pain in my side, the way I'd prop up on one side for hours typing with one hand. So then I didn't want to get out my laptop, which weighs hundreds of pounds (and is usually 100 miles away!) Using the phone is usually pretty handy but you can't do everything on a phone. 

But my point was, doing computer stuff also keeps me occupied with what I feel I need to do. I did make a one-day-at-a-time vow against my inane computer/phone game, which I've kept to for ten or so days so far. 

I wish I could explain the states I've been in. My body has been so at peace it doesn't want to move, especially since moving often evokes a coughing fit. And a soup of swirling images. A sound byte will merge into something visual, to a memory flash from yesterday, to something that that might happen tomorrow, to a scene from a t.v. show I haven't seen in a month. With my eyes closed I'll see an image of somewhere I went in Spain, realize I'm lying in bed thinking of thinking of what to do next, then wake up (an exaggeration), wonder is it a time to take a pill?, yes it is, then I doze off, wake up two hours later with the pill still in my hand...

I tried dictating this once before but, lost it due to different devices overwriting each other. Both Kathy and Paulette are coming to visit this month. It's hard for me to think. A lot of times I am looking at something, not really looking at anything.

A couple of weeks ago several people came over with some great lunches! I updated my food tab if you are thinking about that - simple things that are easy for me to digest. I seem to be winding down on that though, perhaps because I am so occupied with maintaining my body - deal with pain, or other issues that arise, coughing, aches, etc.  Talking can also be a strain because it makes me cough more.

Yesterday I was talking to Danamaya and counted four times that I forgot the second half of a sentence, (Thankfully I can always find it again, so far).

Helen is dropping by some muffins.  I may be seeing Misha tomorrow.

OK, I better write the rest in another post!



Friday, August 23, 2013

What is a waste of time?

Every day I look at Facebook, which usually means finding out what someone did today, what they're thinking about,  clicking a more or less interesting link, or looking at photos. I don't post anything myself. I look at Twitter and The New York Times. I play Bejeweled Blitz (a one minute game.) I don't spend all day doing these things, but do I want to be doing them at all? Sometimes there is a rare gem, like Saunders' speech the other day. 

I'm not going to agonize about it. For the moment I'm just, as Rilke says, "living the question."

Had a good chat with my dad today.

Ordered some Dutch and Finnish licorice online. Laura is a fan, too. 

Three-month retreat in Spain, 2009

Thursday, August 22, 2013

I don't recognize my arm



My body is turning into a different body. Mushy would be one way to describe it. I look at my arm - the skin and muscle tone - and it reminds me of the arm of my grandma Bruun, who died many years ago.

And even the most mild physical activity somehow makes me feel worse, makes my lungs ache and pant and wheeze for a while. What my body wants, craves really, is to lie still. But it seems from my current point of view that moving is what keeps you alive. It's the reason you can digest food and get tired and walk without falling. 

So many things to let go of.

My birthday was fun, saw more people than I thought I would want to!

Sunday, August 18, 2013

Pharmaceutically-enhanced living

Today I was grateful for modem medicine. I can't do much when I am coughing a lot, it's very hard on my body. I can barely pull myself up from my bed. 

After trying cough syrup, I took .2 mg sublingual morphine, and a few minutes later my cough stopped. The difference isn't even primarily coughing vs. not coughing. It's exhaustion/ tension/ restlessness/ slight panic vs. relaxing. It feels like my lungs are getting very small, too small for breathing almost, then that tightness melts away. 

Then my hips started aching. Took two ibuprofen and a little while later, I feel great. 

Come to think of it, I guess without the treatment I got, I'd be dead now. It's supposed to keep you alive longer, which it did, in my case anyway, with a high quality of life. 

Got the suggestion to try marijuana instead of morphine. It seems actually rather complicated figuring out the how and what of medicinal marijuana (i.e., the best use for me, if any.) 

Jules, Padmatara, and Laura are here. Mary Jo and a doctor came this morning. All kinds of equipment I could get that would be helpful. Though I am weak, I'll probably wait 'til I can't do without them. 





Wednesday, August 14, 2013

By way of contrast

Woke up feeling rather chipper this morning. Everything not such a slog.

Possible factors:

  • Hydration - been drinking lots more. Had been getting super dehydrated at night (partly due to drugs.)
  • Recovering more from brain radiation in May? Ears and forehead have stopped peeling also.
  • Not about eating less, as ate like a sow yesterday. 
  • Or was it Laura's awesome foot massage?

Reasons perhaps are unknowable, but I am enjoying it.

Monday, August 12, 2013

The view from inside

I was thinking about the book Dying: A Natural Passage by Denys Cope today, which a bunch of us were reading recently. It's an excellent book - short, super informative and also comforting  somehow. But it is from the point of view of the caregiver, as are all the hospice books, for obvious reasons.

What's it like for me? I thought I'd try to give a glimpse.

Tonight I was lying on my bed for some length of time staring into space with the following list in my head:

  1. Throw away the used dental floss in my hand.
  2. Take a crap if poss. 
  3. Take some morphine to deal with this infernal cough.
The trash can for throwing away the floss is a few feet from my bed, by all accounts, not far. But it does require movement. Sometimes, moving even a few inches feels like an enormous effort. So I lie here - no idea how long it is - 'til due to some unknown force I laboriously turn over, pull back the curtain on my closet, and toss the dental floss (possibly to the floor if I miss!)

After a rest, a trek to the toilet. I sit there a while huffing and puffing to recover from the walk. Inadvertently knock over the little garbage bin. Hm, with my raised toilet seat I'm about a mile away from it. Do I just leave it? No, that's nasty. I manage to kneel down and put the spilled contents back in and set it upright. Rest a while. Crapping successful though always painful (multiple meds I am taking cause constipation, though other ones relieve it to some degree.) In any case, my digestion happens very slowly.

I've been coughing like crazy for the last few days. Yesterday I coughed up some thick brown goo. The doctor that came a few weeks ago suggested that that I might be less tired if I got a handle on the cough, which I am trying to do. Not so hesitant about taking the morphine anymore, which has been the only thing that will stop the coughing, besides making me feel super relaxed. Sometimes the cough syrup works fine. 

So that's a snapshot.

Getting up in the morning involves many tasks that often take me a long time. Sometimes I fall asleep between things, and when I wake up my upper body, my neck somehow, is drenched in sweat. My body is full of surprises!

Some mornings I wake up and feel dreadful, low energy, and can't manage much at all. On others it's easier, things don't seem like such a chore. I feel better when I eat less.

Friends have been bringing over lunches, very nice food. Hot soup lately has been hitting the spot. I'd love to write about some visitors I've had lately, but I don't have the energy for that kind of detail anymore. Also, I'm working on my book (from this blog) and it is hard to work on both. 

Now it's around 10pm, and I'm trying to finish this post before bed, but I probably won't. My laptop is on my table, and I am lying on my bed typing this with my left hand, listening to flamenco guitar on Pandora...  

Wednesday, August 7, 2013

Caffeine, soup

Another pic of me and mo
Had a cup of black tea and meditated with Hridayasri, my body buzzing with caffeine. Still, it was good to meditate which I've done little of since cancer.

I think that I'm getting weaker. For example, the effort to stand up from sitting on what I wouldn't have previously noticed is a low chair. So, gadgets. Namely, a chair for the shower, and a toilet seat raiser. Both these things make  life easier (though I sort of hate them, too.)

I'm turning 50 in a few weeks. Don't know quite how I feel about that. Perhaps not overly celebratory. I had wanted to go on a cruise in Norway. Things have scaled back quite a lot since then. I guess I need to have a plan of some kind.

People often ask if there's anything they can do for me, and up until the present there has not been much. But I have lost a lot of functionality lately. If you'd like to bring over some lunch sometime that would be great.  I updated the tabs on this blog including the food page which says the kinds of things I can eat. I'm not sure whether to setup lotsahelpinghands.com again or if it's just easier to individually coordinate.

The compilation of writings I edited is available on Amazon. It's called Celibacy and Buddhism: Bits and Bobs on Sex and the Divine Life.  I haven't actually seen it yet. I hope I remembered to get permission from everyone for reprinting! Thanks to Vidyadevi for editing and getting it online, and to Dhammarati for designing the fab cover.

I need to get back to this book project before I run out if energy entirely.

On another note, here's the brilliant convocation speech George Saunders gave at Syracuse. I read somewhere that he is a Buddhist which is not surprising.

Down through the ages, a traditional form has evolved for this type of speech, which is: Some old fart, his best years behind him, who, over the course of his life, has made a series of dreadful mistakes (that would be me), gives heartfelt advice to a group of shining, energetic young people, with all of their best years ahead of them (that would be you).

And I intend to respect that tradition.

Now, one useful thing you can do with an old person, in addition to borrowing money from them, or asking them to do one of their old-time “dances,” so you can watch, while laughing, is ask: “Looking back, what do you regret?”  And they’ll tell you.  Sometimes, as you know, they’ll tell you even if you haven’t asked.  Sometimes, even when you’ve specifically requested they not tell you, they’ll tell you.

So: What do I regret?  Being poor from time to time?  Not really.  Working terrible jobs, like “knuckle-puller in a slaughterhouse?”  (And don’t even ASK what that entails.)  No.  I don’t regret that.  Skinny-dipping in a river in Sumatra, a little buzzed, and looking up and seeing like 300 monkeys sitting on a pipeline, pooping down into the river, the river in which I was swimming, with my mouth open, naked?  And getting deathly ill afterwards, and staying sick for the next seven months?  Not so much.  Do I regret the occasional humiliation?  Like once, playing hockey in front of a big crowd, including this girl I really liked, I somehow managed, while falling and emitting this weird whooping noise, to score on my own goalie, while also sending my stick flying into the crowd, nearly hitting that girl?  No.  I don’t even regret that.

But here’s something I do regret:

In seventh grade, this new kid joined our class.  In the interest of confidentiality, her Convocation Speech name will be “ELLEN.”  ELLEN was small, shy.  She wore these blue cat’s-eye glasses that, at the time, only old ladies wore.  When nervous, which was pretty much always, she had a habit of taking a strand of hair into her mouth and chewing on it.

So she came to our school and our neighborhood, and was mostly ignored, occasionally teased (“Your hair taste good?” – that sort of thing).  I could see this hurt her.  I still remember the way she’d look after such an insult: eyes cast down, a little gut-kicked, as if, having just been reminded of her place in things, she was trying, as much as possible, to disappear.  After awhile she’d drift away, hair-strand still in her mouth.  At home, I imagined, after school, her mother would say, you know: “How was your day, sweetie?” and she’d say, “Oh, fine.”  And her mother would say, “Making any friends?” and she’d go, “Sure, lots.”

Sometimes I’d see her hanging around alone in her front yard, as if afraid to leave it.

And then – they moved.  That was it.  No tragedy, no big final hazing.

One day she was there, next day she wasn’t.

End of story.

Now, why do I regret that?  Why, forty-two years later, am I still thinking about it?  Relative to most of the other kids, I was actually pretty nice to her.  I never said an unkind word to her.  In fact, I sometimes even (mildly) defended her.

But still.  It bothers me.

So here’s something I know to be true, although it’s a little corny, and I don’t quite know what to do with it:

What I regret most in my life are failures of kindness.

Those moments when another human being was there, in front of me, suffering, and I responded…sensibly.  Reservedly.  Mildly.

Or, to look at it from the other end of the telescope:  Who, in your life, do you remember most fondly, with the most undeniable feelings of warmth?

Those who were kindest to you, I bet.

It’s a little facile, maybe, and certainly hard to implement, but I’d say, as a goal in life, you could do worse than: Try to be kinder.

Now, the million-dollar question:  What’s our problem?  Why aren’t we kinder?

Here’s what I think:

Each of us is born with a series of built-in confusions that are probably somehow Darwinian.  These are: (1) we’re central to the universe (that is, our personal story is the main and most interesting story, the only story, really); (2) we’re separate from the universe (there’s US and then, out there, all that other junk – dogs and swing-sets, and the State of Nebraska and low-hanging clouds and, you know, other people), and (3) we’re permanent (death is real, o.k., sure – for you, but not for me).

Now, we don’t really believe these things – intellectually we know better – but we believe them viscerally, and live by them, and they cause us to prioritize our own needs over the needs of others, even though what we really want, in our hearts, is to be less selfish, more aware of what’s actually happening in the present moment, more open, and more loving.

So, the second million-dollar question:  How might we DO this?  How might we become more loving, more open, less selfish, more present, less delusional, etc., etc?

Well, yes, good question.

Unfortunately, I only have three minutes left.

So let me just say this.  There are ways.  You already know that because, in your life, there have been High Kindness periods and Low Kindness periods, and you know what inclined you toward the former and away from the latter.  Education is good; immersing ourselves in a work of art: good; prayer is good; meditation’s good; a frank talk with a dear friend;  establishing ourselves in some kind of spiritual tradition – recognizing that there have been countless really smart people before us who have asked these same questions and left behind answers for us.

Because kindness, it turns out, is hard – it starts out all rainbows and puppy dogs, and expands to include…well, everything.

One thing in our favor:  some of this “becoming kinder” happens naturally, with age.  It might be a simple matter of attrition:  as we get older, we come to see how useless it is to be selfish – how illogical, really.  We come to love other people and are thereby counter-instructed in our own centrality.  We get our butts kicked by real life, and people come to our defense, and help us, and we learn that we’re not separate, and don’t want to be.  We see people near and dear to us dropping away, and are gradually convinced that maybe we too will drop away (someday, a long time from now).  Most people, as they age, become less selfish and more loving.  I think this is true.  The great Syracuse poet, Hayden Carruth, said, in a poem written near the end of his life, that he was “mostly Love, now.”

And so, a prediction, and my heartfelt wish for you: as you get older, your self will diminish and you will grow in love.  YOU will gradually be replaced by LOVE.   If you have kids, that will be a huge moment in your process of self-diminishment.  You really won’t care what happens to YOU, as long as they benefit.  That’s one reason your parents are so proud and happy today.  One of their fondest dreams has come true: you have accomplished something difficult and tangible that has enlarged you as a person and will make your life better, from here on in, forever.

Congratulations, by the way.

When young, we’re anxious – understandably – to find out if we’ve got what it takes.  Can we succeed?  Can we build a viable life for ourselves?  But you – in particular you, of this generation – may have noticed a certain cyclical quality to ambition.  You do well in high-school, in hopes of getting into a good college, so you can do well in the good college, in the hopes of getting a good job, so you can do well in the good job so you can….

And this is actually O.K.  If we’re going to become kinder, that process has to include taking ourselves seriously – as doers, as accomplishers, as dreamers.  We have to do that, to be our best selves.

Still, accomplishment is unreliable.  “Succeeding,” whatever that might mean to you, is hard, and the need to do so constantly renews itself (success is like a mountain that keeps growing ahead of you as you hike it), and there’s the very real danger that “succeeding” will take up your whole life, while the big questions go untended.

So, quick, end-of-speech advice: Since, according to me, your life is going to be a gradual process of becoming kinder and more loving: Hurry up.  Speed it along.  Start right now.  There’s a confusion in each of us, a sickness, really: selfishness.  But there’s also a cure.  So be a good and proactive and even somewhat desperate patient on your own behalf – seek out the most efficacious anti-selfishness medicines, energetically, for the rest of your life.

Do all the other things, the ambitious things – travel, get rich, get famous, innovate, lead, fall in love, make and lose fortunes, swim naked in wild jungle rivers (after first having it tested for monkey poop) – but as you do, to the extent that you can, err in the direction of kindness.  Do those things that incline you toward the big questions, and avoid the things that would reduce you and make you trivial.  That luminous part of you that exists beyond personality – your soul, if you will – is as bright and shining as any that has ever been.  Bright as Shakespeare’s, bright as Gandhi’s, bright as Mother Theresa’s.  Clear away everything that keeps you separate from this secret luminous place.  Believe it exists, come to know it better, nurture it, share its fruits tirelessly.

And someday, in 80 years, when you’re 100, and I’m 134, and we’re both so kind and loving we’re nearly unbearable, drop me a line, let me know how your life has been.  I hope you will say: It has been so wonderful.

Congratulations, Class of 2013.

I wish you great happiness, all the luck in the world, and a beautiful summer.

Saturday, August 3, 2013

Visitors galore


mom
The last few days I've felt better when I wake up, which is to say, not horrible. No more dizziness. And I am able to walk a few more steps than before. What changed? I've been trying to eat less (more appropriate amt for someone who moves very little with slow digestion caused by meds), and I started watching the British t.v. series Shameless. Those are the only things I can think of! I did introduce a small amount of caffeine back into my diet which I'm enjoying.

When I seem to be experiencing an upswing in general, it could mean my stamina, etc., are improving for a while, but it also could just be part of the non-linear progression of my disease. My disease! I dont know if I've ever said that before! Anyway I enjoy being able to do a little bit more for myself (like walk into another room and walk back! Have a shower without needing to somehow build up the energy first.) Tomorrow's often a surprise.

Reading Ursula Le Guin's The Earthsea QuartetNYT in the mornings. Also: St. Lucy's Home For Girls Raised By Wolves. Inspector Singh Investigates. American Gods. Can't really engage at the mo. with weighty topics. Also enjoying music - a French radio station, fipradio.fr, and Pandora shuffle.

Visitors galore this week, especially yesterday. Lots of folks dropping by, too. Mom. Oscar from Seattle. Brothers-in-law. Many folks passing through on their way home from the retreat. Old pal Jeff is here now (from So. Cal.) currently making us an omelette...

The retreat I was supposed to be co-leading with Jayacitta in Scotland started yesterday. Thankfully the stellar Paramananda was able to replace me so that worked out very well. Well. For them! I'm sorry not to be there. I miss walking and cooking and zooming around, although in a way, not that much. Friends, having lives in the world outside this room, bring me their news, in person and on email, which I enjoy. You people have no idea how much energy you have. 

Thursday, August 1, 2013

Is cancer a gift or a battle?

This short blog post on NPR (National Public Radio), Is Cancer a Gift?  was interesting. In case you can't access it, I pasted it at the end of this post. It's about a reaction to being told that cancer is a gift.

Communication is a sensitive thing, I suppose for everyone. How much more difficult when fear or grief, or just vague discomfort, are involved.

Perhaps earlier, more inspired phases of this blog would have driven the woman who wrote that article crazy. I don't feel that cancer is giving me a lot of gifts now, although from a certain point of view...whatever life doles out is a gift, or at least that's a more useful way to look at it, when possible, than the alternative. I guess this assumes there is some potential value in human experience, in whatever it delivers. I think of this as roughly equivalent in other religions who strive to live with 'God's will.'

Which is the opposite of a fight, or a battle, the popular language these days in talking about disease. One model is rather more passive, or receptive. The other is, I am an agent of my own destiny, I shall think positively. Cancer and I are engaged in mortal combat, and I shall conquer it (and then if I do not, I will have failed.)

Telling someone how they should see things is a problem. The point I suppose is to learn how to be truly sensitive to other people, without our own views or advice getting in the way. It is not easy to do. It reminds me of a Buddhist teacher who said something like, The greatest gift we can give is to be less of a problem to our friends by understanding ourselves.

I will write more about how I am in another post.



By BARBARA J. KING

Originally published on Thu July 25, 2013 4:02 pm

There's a gift in cancer. It says so right on page 203 of Greg Anderson's book Cancer: 50 Essential Things to Do (2013 edition; first published 1993). Anderson quotes the singer Olivia Newton-John as saying this about her "journey through breast cancer": "I see it [cancer] as a gift. I know it sounds strange. But I don't think I would have grown in the areas I did without this experience."

Then Anderson urges his readers to "Seek the gift in cancer. It's there."

Anderson's way of putting things is no fluke; the cancer-as-gift trope is all too popular. Mark McKinnon used it in writing for The Daily Beast, and Barbara Ehrenreich reports (but does not buy into) other examples over at The Guardian.

In the two-and-a-half months since my diagnosis of a rare form of uterine cancer, I've not succeeded in locating any gift in cancer. I have discovered that, with the steadfast love and support of family and friends, I can deal with the effects of extensive surgery and of chemotherapy, ranging from discomfort related to the removal of various bodily structures including 29 lymph nodes and intense pain in muscles and bones that follows (for some people) an infusion of carboplatin and taxol drugs, to fatigue and oral thrush. It's hard work, this recovery.

But maybe the gift is yet in hiding and will appear sometime in the next six months as the chemotherapy regime and, later, radiation continues?

I don't think so. And let me clarify one thing: The hundred ways, large and small, that I'm shown logistical and emotional support from those who care about me is because of the generosity of the people in my life. In no way does cancer get the credit for that.

Ehrenreich is one of my guides on this topic. She concludes her essay on "the bad science of positive thinking" this way:

"Breast cancer, I can now report, did not make me prettier or stronger, more feminine or spiritual. What it gave me, if you want to call this a 'gift,' was a very personal, agonizing encounter with an ideological force in American culture that I had not been aware of before — one that encourages us to deny reality, submit cheerfully to misfortune and blame only ourselves for our fate."

Another of my guides is Lisa Bonchek Adams. Adams, also a writer, and a person with stage IV metastatic breast cancer, is a friend of mine — although we know each other through social media only, she is a friend nonetheless. On cancer-as-a-gift, she writes in a blog post something that resonated with me:

"A gift is something you want to share. 
"Something you want to give to someone else. 
"Something [about which] you say 'Next time I need to give a special gift to show someone I care, this is what I want to give.' 
"Cancer is not that thing. 
"Language matters. 
"The words we use to describe illness, death, and emotion are important — we should choose them carefully."

How right Adams is: Language matters.

Anderson, in Cancer: 50 Essential Things to Do, urges patients to "reframe" their disease and see it as "an inspiring challenge rather than a threat." He also suggests some affirmations for the patient, ranging from I am filled with hope to This is going to turn out perfectly and I am in charge of my cancer.

It's no gift to suggest these last two affirmations to people with cancer.

There is no gift in cancer.

Wednesday, July 24, 2013

Somewhat stream of consciousness

Padmadharini, Singhashri, Hridayashri, myself
I haven't written an update in a week or so, so this may be somewhat patchy. Actually I have been writing a bit, but mostly thinking about it more than doing it.

I'm finding it harder to describe my experience. Partly maybe because I'm talking much of the day. Not that that wears me out, but I am spending much less time alone than I used to, by necessity. There are so few things I can manage on my own these days, and that seems to change a bit every day. For example, a few days ago I thought my stamina was improving, I was able to walk a bit further. I was able to take a shower standing up. The last two days though it's gone the other direction. After taking maybe ten steps and I lie on my bed panting and wheezing for a few minutes, then I feel fine. Sometimes I cough a lot or hardly at all, or I have energy one day (relatively speaking) and the next day I have next to none.

Various people have suggested getting oxygen. It might not help but I will bring it up with the nurse Mary Jo next week. She mentioned last week that "young people" such as myself (I'm 49, i don't think of myself as particularly young, but I am a young cancer patient) tend to live beyond the 6 months estimated once someone is in hospice.

I've never moved my body so little. I've lost muscle tone. My skin is different. My body feels like a different body. Generally, my feet are cold, and my head and neck are warm. If I put the heating pad on my feet, it will feel good for a while, then my upper body starts to sweat. Mary Jo said many cancer patients have temperature regulation issues, so it's not hormonal as I thought. I have written for so long that I have no actual cancer symptoms, that all my symptoms were from treatment. Of course that has changed.

I woke up yesterday morning wheezing with my sacrum throbbing in pain. Before that I had been spared dealing with the shortness of breath at night. I tried some of the sublingual morphine. It wasn't dopey like I expected, actually rather mild. Dealing with shortness of breath is the most deeply unpleasant thing I have had to deal with on this journey. It brings up an instant feeling of panic in my body. Moving slower and sitting down when I have to walk more than a few steps helps, but after a lifetime of zooming around it's a hard adjustment to make.

Saw Misha for acupuncture last week (felt great), and my bed got sorted out, and have a wheelchair now, too. Still have little desire to go outside. In fact, I don't have much desire in terms of doing things. Mainly I want to avoid the newfound challenges inherent in stepping outside this apartment. I thought I might be more adventurous. Not at all.

Laura, Jules, Lisa
My three sisters were here from the four corners. That was good. They are all super sweet. I gave them all my old drawings (most are dated 1979 or 1982) which was a relief to me but seemed to make everyone else sad. Laura's going to stay for another while and at the end of this week, bring my mom up from southern California for a day or two. Also help me finish some paperwork.

Apparently email updates about me are going out now and then. I don't usually see them or know who they go to. It was pretty amusing when my sisters would attempt to pronounce the name of someone who replied - it would remain a mystery until I asked for spelling. 

You can also email me directly, though I may not have the energy to reply.  


Saturday, July 13, 2013

Hospice first impressions/The girl with the temporary dragon tattoo

Met with some of the hospice folks this week - an intake person and a social worker. They are super cool people. Here the focus changes to keeping one relatively happy and comfy, rather than merely alive. Also, they come to me, which is AWESOME, and they're available on the phone 24/7. I'll meet the nurse on Monday or Tuesday.

Kaiser hospice provides various visitors and some kinds of equipment, but no...I don't know what to call them. Caregivers, aids, workers. In other words, the hospice nurse and some other people are going to visit and talk to me at specified intervals, once a week or whatever is decided, to help with medications/pain/any issues that arise, etc., but they're not going to stay for 5 hours and read me stories or administer morphine. (They can arrange this, which I would pay for.)

They delivered a hospital bed a few nights ago. It's small, looks and smells very hospitaly and plasticky. I didn't sleep that well on it 'cuz of this...layer that's on top of the mattress. It has these sort of pockets that fill with air...it's like lying on a carpet of hacky sacks. I deflated it a bit, we'll see. Being able to easily sit up in bed is great, which is why I wanted it.

Just got my feet rubbed by my niece Paris, and the catering around here has been excellent. Kathy has made spring rolls, spinach and ricotta ravioli, hummus plates, quesadillas...

I'm feeling that I have a little bit more stamina, meaning that I can stay vertical a little longer. My mouth seems not so dry. Perhaps much of what's gone on in the last few months really was radiation fatigue, rather than a sign that I have 8 toes in the grave.

Morning pills, hope the dye they use isn't carcinogenic...

Something to do. There's a moustache of normal hair
you can see the five o'clock shadow of on my neck.
Wonder when hair will grow back?

Kathy and Paris making way for new bed

Tuesday, July 9, 2013

Doctor visit

Jules and my sister Kathy and niece Paris came with me to see Dr. Nelson yesterday, wheeling me around in a wheelchair which helps a lot with the breathlessness I get from walking. Still, just getting dressed to go out continues to feel like a lot of work. I have to pace myself and I am learning how to do things more slowly, after a lifetime of zooming around.

Dr. Nelson was being very friendly. She actually made small talk for the first time ever. As we were leaving I was surprised to hear her say, "You're an amazing person." I'm not sure what she meant really but I'm glad she likes me.

We talked about palliative options. She gave me a load of cough stuff (syrup, Tylenol with codeine, and something else), to see if something can help. If it doesn't, some lung radiation (not Cyberknife) after a CT scan would be an option. Chemotherapy is off the menu. At the moment, I'm disinclined to do either.   

My appetite is back, and I am sleeping much less. The coughing bothers me, and some hip pain. The most disturbing thing is not being able to walk (I fear I repeat myself) or having to lie down so much of the time. Thinking back to my anagarika ceremony I see how exhaustion somehow reduced my personality to the bare minimum. I guess that was radiation fatigue.

Meeting the hospice lady today. (She had to reschedule to later because of the recent plane crash at SFO.)

I miss my retreat massages. If anyone knows a good masseuse who makes house calls, let me know!


Saturday, July 6, 2013

Walking slow


I can't summarize the last two weeks, but maybe I can say a few things.

The retreat was wonderful. Because I got a chance to really take in my current physical situation, not to say predicament. And because my friends took excellent care of me there, brought me three meals a day, gave me massages, walked with me up to the shower with a chair so I could sit down to catch my breath every 15 steps or so. I have never been the object of so  much kindness before, as far as I can recollect. It takes some getting used to! It's so nice, too, to be in an environment again where the focus is on...well, existence really, one's own, and how one interacts with it. 

Right now breathing in sounds incredibly wheezy, like there are ghosts in my throat. Or sad elephants. 

Seeing Dr. Nelson Monday morning, and a hospice nurse Tuesday morning (here). 

My sister Kathy and my niece and nephew arrived tonight. 


Putting together Tania's massage table

Saturday, June 22, 2013

On retreat

I'll be at Jikoji for the next week or two. July 6 is the latest I'll be back, could be sooner. Love to you all. 

Friday, June 21, 2013

What is being tired? What is being me?

Sweet sister Laura and Jon
who left for Fresno on the train yesterday

For the last few weeks I would get the idea, for example, to open, or close, the curtains in my room, which are about 10 feet away. Lying in my bed, I would think about it, off and on, for say an hour. Then I might decide not to, thinking it's really not worth the effort. Or I'd do it, and fall into bed afterwards, breathing heavily, to recover. I lay this out in some detail because I myself have a very hard time understanding 'the new tired'.

But, I don't feel that tired anymore. I can do a few things. I started taking 2 mg of dexamethazone (steroid) yesterday but I had more energy before that. I'm still lying down most of the day, but I'm not sleeping as much. You know what else takes energy that I never noticed before? Humor. That's when you know you're really sick. It's impossible to make a joke. I really enjoy making people laugh. Not being able to do much for myself and often not being able to make jokes, I can hardly recognize myself. 

People say I might be happier somewhere else, not cooped up in this room. But who's cooped up? Not me. I have everything I need here. Going outside is somewhat stressful. Going on retreat in a few days will be fine because once I get there I'll possibly do much the same thing (but in a prettier place, with help and meditation options.) 

How do I feel? A prisoner of my body, which is going to stop, and a certain level of acceptance of that. A lone polar bear swimming, scanning the horizon for land. Other people's sadness. Trying to get used to being a different person, or maybe just a different body. Eyes closed and a hand feeling around in a drawer for something lost. A clock. A future goodbye to myself. Taking off the hazmat suit. Looking at the ocean.

Here's me saying a little about why I became an anagarika

Wednesday, June 19, 2013

Dr. Nelson in the morning

I lost 4 lbs since I saw her last (around one week ago) which I was surprised by, because I've been eating a little more.

I caught a glimpse of the lung x-rays but did not manage to take a photo. They revealed that mets in my upper left lung lobe have caused it to collapse. Which is distressing but at least explains the shortness of breath and weariness. Apparently people can live with just one lung. At this point I have one and a half. 

The brain MRI was checking for 'disease progression' only, since an accurate scan can only happen 2-3 months after radiation. Some of the smaller mets are gone and the largest one has shrunk, but there is some swelling around it. She suggested taking a low dose of steroids to help with appetite and energy (and swelling) and see how it goes. 

Cyberknife could be an option - it's a super focused kind of radiation treatment - for the brain and/or lungs. She's going to talk to Dr. Patel about options. 

I told her I would not do chemo unless I start feeling a lot better than I do now. She said she'd put me on hospice but since I'm going to be away anyway she'd wait 'til I get back. If I do decide to do chemo she'd take me off hospice (apparently one can start and stop it like that.) 

My next appointment with her is July 8. I'll leave the retreat July 6, if not earlier. I imagine that it will be my last retreat.

It was a sobering visit, which probably hasn't totally sunk in.

Can You Find It?
Circa 1987 painting of Ronald Reagan,
Laura with laptop,
gold kesa,
shrine,
walking brain sent by Dhammagita

Monday, June 17, 2013

Ceremony

photo by Dhammarati
I had my anagarika ceremony yesterday led by Parami. It was very moving for me, although I was a bit worried the whole time about whether I would have the stamina for it.

On other fronts, energy is variable, but mostly low. Some days I can hardly get out of bed and don't want to eat anything, other days the sleep is rejuvenating to some degree and I can do a few things. Overall, it doesn't seem to be improving.

Now what remains to be seen is whether or not I can manage to go on retreat for two weeks on June 22.

Wednesday, June 12, 2013

Prosaic update

Laura's here and made an 8:00 AM appointment yesterday with Dr. Nelson, who said the reason for my fatigue could simply be cancer, or it could be a prolonged side effect from radiation, or dehydration, or other things that I don't recollect. We talked with her for a while and then did various tests on various floors (they wheeled me around in a wheelchair.) Chest X-ray, and an hour of hydration, and a trying time with a nurse trying to get blood out of a vein three different times. Finally she tried another vein and it was fine. Anna Dowling, the nurse, called later and said I have a bladder infection which they want to give me 7 days of antibiotics for. I've had it for 2 or 3 months, was getting used to it. I might have been able to get rid of it drinking corn silk tea. But I didn't. Botheration.

Life at this point seems to be a big chore, or more accurately an endless stream of chores, many of which I used to take pleasure in (or barely notice.)

Dr. Nelson asked me if I was still interested in doing the chemotherapy that we talked about. I replied that I was still planning on it but I had also been planning on feeling a lot better than I do now. I wonder if I'm going to have to change the game plan on that. What if I don't regain my energy? Unknown.

Having said all that, I feel a bit more energetic now.

I got the Chinese lozenges. They are very strong but not too sweet.

If you have emailed me, or given me something, please forgive me if I haven't replied. I have not been able to keep up with things.

Sunday, June 9, 2013

Golden throat lozenges

Watching "Girls" (HBO series) and a documentary about Richard Attenborough.

I seem to be getting more tired, rather than less, which is disturbing. I'm sleeping more, and the amount of time I am able to stand up or even sit in a chair is shorter. I'm making an effort to eat more and hope that will help me regain some strength.

When I'm in bed, I started lying only on my back, which means way less coughing. Dhammagita says I might like these (left), Golden throat lozenges. If you can find me a pack so I can try them, please do! She got them somewhere in Chinatown. American cough drops, even the sugar-free ones, are too sweet for me.

All right well, that's all I got right now!


Wednesday, June 5, 2013

Skinhead

You know how when you were younger and allowed your skin to get super burnt in the sun? And a few days later, in passing your hand across it, wherever it was, flakes of dead skin would wad up. My head is like that today, many layers of skin are coming off it. I took a bath and was astonished at how much skin was left in the tub. All part of the healing process I suppose. A couple of years ago could I have guessed that I'd be writing about dead skin in the bathtub on a cancer blog?

And occasionally coughing like crazy, tonight to the point of throwing up. There are simple things I can do that help this, like drinking hot water and using acupressure points. I did a bit this evening.

If I hadn't started out being overweight, I would probably be too skinny now. Hopefully the appetite will kick in again before I get past a certain point. A friend made me some cornbread with weed (actually it's only the butter that is cooked in weed). I tried one small bite and I must say (after quite a while) I felt my body relax in a way that it doesn't otherwise. I think it helps with my appetite too. Today I had a slightly larger bite and later talking to Padmadharini I could not remember what I was talking about once I got to the second half of a sentence. That happened three times. Oh well, I had an excellent nap afterwards.

I got a sweet message from Dr. Littel today asking how I am doing. I haven't seen him in quite a while.

Sorry, no pictures, as I am not actually taking any and don't have the wherewithal to search the archives.

Monday, June 3, 2013

What I've been up to

Not much!

Enjoyed watching all available episodes of Sherlock, a BBC series starring the impossibly named Benedict Cumberbach.

I don't feel depressed which I'm glad about. I did not anticipate how doing ordinary things - anything that involves standing up - could take such an enormous amount of effort. Like standing up and putting on my jeans, or say, walking 10 steps. It's a huge mental adjustment.

Ideally I would be drinking more corn silk tea and putting more moisturizer on my leathery forehead and skull, and doing some rudimentary form of movement. I'm doing a bit, just not every day.

I'm very thirsty, and I am eating very little. Sometimes I only want to eat a specific thing (like dill pickles, pizza, or watermelon!) Especially when I get very tired, food sometimes becomes disgusting.

BTW my anagarika ceremony is 10am on June 15. Unfortunately it's "Order only" because of chanting the 10 (Order) Precepts. Hm, I just remembered I had a dream last night that involved some kind of threesome. I remember thinking, oh well, might as well do it before the ceremony! Yes, things have gotten a bit sexier as I figured they might. It's funny how in my dreams I am really into sex.

Jules came over yesterday and helped me out a lot while I mostly laid in bed. She brought food and cut up watermelon for me and took away stuff (mostly clothes that are too big or conservative) that I had in a pile for a month or so. She also looked up "whole brain radiation fatigue" and reminded me that it usually only lasts a month, which is great news that I forgot. It's been about two and a half weeks.


winter rain
people have been so kind
my eyes fill with tears
-santoka

Wednesday, May 29, 2013

A homeless guy called me "sir"

Dhammarati and I worked on this groovy book
cover at some point. The photo is from my tent,
on the three month retreat I did in '09.
Perhaps for many women, being female is rather more obvious. Maybe it's the delicate bones or facial structure. But for me it's all about my earrings, hair, or whether or not I'm wearing a dress. I am fairly tall, with broad shoulders. I'm not sure why it annoys me so much when someone calls me "sir"!

Taught the second class downtown today. I enjoyed teaching the class and think it's good, but takes an enormous amount of energy in my current state. I realized that saying "it's only an hour" is ridiculous, because a shorter class is actually more work than a longer one. Anyway, half way through! Makes me appreciate even more teaching that class with Bill who was holding the reigns.
Padmatara is coming now and will be backup if I can't do it, so that makes me feel much better.

Yesterday with the class and then seeing Misha I had to go downtown twice, which was extremely difficult. When I get really tired there is much more pain and coughing, but the good thing is that I do feel rejuvenated after sleeping, for a while.

I took some time writing to shabda, our monthly Order "reporting-in" journal. Here is what I wrote:

San Francisco, May 26, 2013

Dear friends, After receiving 10 days of radiation to my brain (yes, it is very sci-fi). I'm also taking Alzheimer's medication (in a very recent study it was shown to reduce cognitive decline from brain radiation.) So I'm probably at least a bit dumber than the last time you saw me, and the fatigue is intense. And lying in bed most of the day is a good time to catch up on reading shabda! Thank you to those who have wished me well.

My experience of the Order now is largely one of love and friendship. Having ended eight years of working for the Center, and, in a way without the distractions of the difficulties that come up working with people and getting tasks done, all that's left is this very strong sense of connection, and the feeling of love that arises for people, not just people here, everywhere. I'm finding it amazing, not so much that Bhante created this Order, but that he even had the idea in the first place.

Because in my experience the prospect of death brings out love. Much of the love is tinged with sadness, but even that makes me realize what a gift it is to be able to love so many people, and to be loved. I confess that I was not aware of this prior to knowing that I probably have a terminal illness.  Of course some of the usual barriers to expression have been removed, too, so much more gets said than it might have BC (before cancer.) I feel blessed to be part of this Order.

On a related note, I just spent a most delightful 10 days or so with Dhammagita. Not only was it fun  but she completely barraged me with gifts, which I sucked up like a hungry ghost  (albeit with a very large throat.) Sad to say goodbye yesterday.

Many people think of me as a dying person. This is mostly not how I think of myself. It's true that a year or two more of living is probably the most I can expect, that recent scans of my body (plus a routine brain scan) in the last month surprised everyone by showing cancer all over the place, even though I have no cancer symptoms. In terms of my daily experience, I am focused on life. The direction that my energy takes has completely changed to sort of interacting with my body, which is to say, mitigating the physical side effects of cancer treatment, and mental or spiritual effects as well. It is an all-encompassing task. In general, my orientation has almost completely changed from the future to now. I am still, at least sometimes, is very much full of life, which of course will be more apparent in person than it is on my blog. I remain cancer-symptomless, but after many different treatments in the last year and a half, all assaults in their own way, the side effects seem to be piling up. I include in the side effects all the different kinds of aging my body has done, mostly not visible, in a way that is beyond my 49 years.

Working with Vidyadevi to turn my blog Crap! I've got Cancer! into a book. Also, I will self-publish soon, also with her help, a collection of writings (from Bhante and other Order members') on brahmacarya called "Celibacy and Buddhism: Bits and Bobs on Sex and the Divine Life." I'm thinking it will be on the best seller list in no time...or else hopefully be a useful source of info for those looking for it. If anyone out there wants to do a second edition sometime - there is much more that could be usefully added - please do.

My anagarika ceremony will be on our Order day on June 15. Parami is flying out here to do the ceremony. (Fundraising for that initiated by Savanna in New York, bless her cotton socks!) My illness has pushed me a bit more into that way of life (simplicity...and a focus on my body in a way that is naturally not sexual) so it feels like something that's already been done in a way.

I've spent a lot of time writing the blog for the last...year and half, so have written into shabda maybe twice I think. I'm going to try to write in more.  As my paternal grandmother used to write, Armfuls of love, Suvarnaprabha



Friday, May 24, 2013

Correction

I realized I gave the wrong impression in my last post, that things are healing up and I'm chipper...So I changed this paragraph to say:

I did stop taking the steroids, and life is much better without them, tho' they probably help me have energy that's more similar to other people. Itchy ear canals have stopped, and fore/head much less burnt. However, so far I seem to have around 1-3 hours available per day of non-lying-down-activities. For example, today I was NOT lying down or asleep from 5-8:30pm.

It is a huge mental adjustment, realizing that I am able to do almost nothing but lie in bed.



Handy

Left side of head,
definitely South America
Here's what I wish I had RIGHT NOW! Even Dhammagita, who generally speaking  has everything you ever need, now or in the future, in her purse, doesn't have them! (She did have a few good cough drops, which is how I found out they're all not like candy.)
  • A few cute, light hats that are not weird to wear inside. Trilby is one kind. Canvas short brim? (Fishing hat, canvas bucket hat?) I now have 2 in beige. A couple more, fairly neutral, would be fab I will need them for months until my hair grows back. 
  • An overbed tray table (for eating in bed.)
  •  I was craving dill pickles for two days but that seems to have passed. Tong brought me an excellent, very spicy jar last night. (I ate four of them!)

I did stop taking the steroids, and life is much better without them, tho' they probably help me have energy that's more similar to other people. Itchy ear canals have stopped, and fore/head much less burnt. However, so far I seem to have around 1-3 hours available per day of non-lying-down-activities. For example, today I was NOT lying down or asleep from 5-8:30pm. It is a huge mental adjustment, realizing that I am able to do almost nothing but lie in bed.

Here's a cancer blog Ashokashri sent. by a woman doctor in England. I enjoyed it. Reminded me a bit of mine! http://drkategranger.wordpress.com/

Apparently many people have given to a fund to get Parami out here to do my anagarika ceremony in June. THANK YOU THANK YOU THANK YOU. 


Wells Fargo Stage Coach Museum anyone?
Wtih Dhammagita.

Tuesday, May 21, 2013

Needles counted, help, class taught, and partly fine

Saw Misha and counted the needles in my head: 22. Got some weird pictures.

Asked Tong to pick up prescription (brain helper), which I ran out of over the weekend. He kindly did so and left it in my mailbox where I retrieved it later. Trish is picking me up some corn silk (for tea) from Rainbow. I lost what I had (twice actually) and Misha says I should have it every day. And Dhammagita did some breath work with me this morning which increased my lung capacity, awesome. She also brings me delightful things, like a rubber baby's head that has a faint but unmistakable mohawk.  

I taught a lunchtime stress reduction/ meditation class today. It went very well, It's at a groovy shared workspace type place on 2nd street. However, it is fucking crazy that I am teaching this class, well, at this time - which now that i think of it is probably a low point say in the last 7 or 8 months, if not longer! Fact is, I'm a little bit stupid, is the shorthand. Yes. Things you wouldn't have noticed as taxing in any way, like making a decision of any kind, reaching across the bed for something just out of reach, navigating anywhere, a flight of stairs, planning anything, driving, talking...blogging I can do lying down. But after many hours of lying down, I can have fairly normal energy for an hour or two.

Have an idea for an art project. A Wheel of Fortune with a symbol for each side effect (they seem to do something of a rotation) and remedy. Or maybe a clock with many hands. Inside of a body. Or brain. 

Listening to Tibetan monks with their super low voices chant healing verses (Sacred Healing Chants of Tibet), I'm really enjoying it.

I feel like crap on one level, and it is challenging responding to new limitations (and not knowing if I will have them for a few weeks, or many months.)  There's also some part of me that is fine, not wrecked at all. Even though right now I am very sleepy and my body aches, I feel in touch with it. Time to sleep. 

"Now is the season to know that everything you do is sacred."
Hafiz

Monday, May 20, 2013

Redaction

I'd like to 'stage' some photos,
but who's got the energy for that?

Now I never should have said that I am burning with life. 'Cuz it ain't true anymore, or not much of the time. Sometimes, especially in the morning, I barely move, and when I do it's very slow, and the horizontal position fills me with joy. I wonder if taking the tiny amount of steroids I'm supposed to stop taking today is what makes it eventually possible for me to get out of bed.

I had two bodywork sessions today: a reiki from Tania this morning at Julie's, and a shiat'su with Dhammagita this afternoon back in the city. Both of them in different ways send me relaxing and sinking back into my body.

I was thinking today that "how I am" moves between two poles - one end being relaxed and fully or more fully occupying my body. The other more about trying to "manage" everything on all the different levels. Medications and herbal pills, symptoms (actually, side effects of treatment, I have no symptoms that I know of), medical appointments, bodily tension, 'complimentary medicine' appointments and classes, decisions, analyzing.

When my body is essentially being assaulted in bizarre ways by treatment, and all kinds of management strategies ensue, the body begins to some degree to turn into a thing, which means that feeling is replaced by management strategy. Basically, more of the life force or awareness, I'm not sure what to call it, moves to my head and withdraws from my body. Coming back to a feeling that I can just be in and directly experience my body is always a great relief.

My 'look' now is tougher and includes lots of dark head stubble, an unorthodox Mohawk, and tattoos, albeit temporary ones. The hair down my head that looked like something's tail is smaller since more hair has fallen out. I find that sort of normal facial expressions look harder. more angry. Maybe the red forehead is a factor too.

I noticed yesterday that my skull emits heat. The burn on my forehead seems to be dimming a bit.


Friday, May 17, 2013

Flights of angels sing thee to thy rest

This morning - or it might have been yesterday morning - I had a dream, or really it was more like being semi-asleep and hearing my sister Kathy's voice. She asked if I knew that Chris had passed. I figured it didn't mean anything since I would have heard about it...but turns out she did die this morning. Our dark joke was that she was winning the race. She certainly did go fast, two months since the diagnosis. I am relieved that her suffering is over. She was a wonderful person.

Six days ago - me, dad, Paulette, Kathy and Chris
I felt less horrible today in the various ways, for example, the itch in my ear canals wasn't actually pulsating. And I'm not as tired. Visited some with Dhammagita WHO BROUGHT QUORN SAUSAGES FROM ENGLAND. She claimed they were "vegetarian protein" with a lot of other food items. Customs didn't even look at them, surprising.

She also buzzed my hair. Since the hairdo necessarily operates in conjunction with the state of my head, it looks dreadful, however we are working with what we have here, which is a very messed up, burnt, hair-growing-in-moldy-jagged-patterns, looking cranium.


Knives at the ready?

It actually feels good to do something with the mess that is my skull. Will I actually go outside like this or will I cave and wear the wig? Will I wear the wig to the lunchtime meditation class I'm teaching downtown next Tuesday? I'm thinking about not applying the veneer of healthy-hair-look over it this time, but not sure I want to deal with the reactions either. In any case, 'til the burns heal my head isn't going to be seeing the light of day much.

Thursday, May 16, 2013

Side Effects Galore

Slightly blurry but otherwise
nice photo of Team Hair
AKA Padmatara and Elaine
I have so many side effects going on that I don't know if I can be bothered to write about all of them. Most distressing  is the itchy ear canal. Way in the back of my throat, too. Who knew there were so many parts in one's head to get chafed? My eyes don't hurt, so there's that. At night I am mostly not sleeping for more than an hour or so at a time, probably because of the bladder issue. Overall I feel rather zombie-like.

The roots of my hair are very sore, and hair is vacating rapidly. Elaine gave me a mokawk. It looks totally fricking weird, though much improved over the bald circles. I can't believe I'm saying this, but the chemo hair loss I had was better! Overall, losing the hair is a big deal. Hair, short or long, for a lot of women anyway, is part of normal, healthy, alive.

My anagarika ceremony is scheduled for the Order Day June 15. Parami is coming out for a long weekend. I wish I could provide a link to something that explains what this means in our Order, but I can't find anything. However, a few years ago I put together some writings about it, and if all goes well it will be available in book form on Amazon in the next few weeks.

P.S. A few people have assured me that "easy" sudokus on airlines are hard!

Tuesday, May 14, 2013

Surface tension

Radiation above the line,
includes ears and forehead.
Turns out most of the symptoms I listed yesterday are caused by the radiation. After noticing the nurse I was supposed to talk to seemed to be leaving for lunch, I ended up seeing to Dr. Patel. Apologies for the pangs of jealousy some of you got reading that. Dr. Patel is popular with the ladies. It is hard to understand how one could go through medical school and have the job that he has and still be so sweet and sympathetic.

My forehead is bright red. Unfortunately they didn't tell me that was part of the deal, so I haven't been putting the burn creme on it. (He apologized!) My inner ears itch like crazy. He looked in them, said they're just irritated. The urinary pain is probably scarring/fibrosis from the last radiation I got. I just have to decide if it's bad enough for me to want some intervention, or if I can live with it.

Half-dose of the dex. for five days. Time to start feeling crap!



On being seen as "dead soon"

I seem to have a different projection for myself in terms of how long I might live. Sure, I have cancer in a variety of shapes and sizes - from a few centimeters down to a few millimeters and no doubt more that's too small to detect - in my lungs, brain, liver, spine, sacrum, and hip bones, spleen, and adrenal glands. This is what the mechanical eyes that see into my body project onto the television. It's all on paper, on screens.

My daily experience is completely different from this, quite the opposite actually. I am dealing with drugs and treatment side effects. But in spite of that, or no doubt sometimes because of it, and perhaps because of the excellent conditions I find myself in, I am positively burning with life. I think I may have another year or two in me yet, because of my "high performance status" in the words of Dr. Patel, or more subjectively because I have no cancer symptoms. The degree to which I do feel sick is due to treatment, not disease.

It's also true that more than a year or two out, I have no future thoughts of myself stored in the "largely unconscious projections about the future" section of my brain, which used to have a lot more content. But for now, I do not feel, physically, like I am dying. I manage side effects, but do not feel sick. I know that I will. It is not clear to me now that that will be soon.

Side effects update

On the plane back from Orange County I wasn't able to do an "easy" sudoku. It seemed really difficult. Then I started a "moderate" one and got more numbers, but many ended up being wrong. There could be other reasons for this, like lack of sleep, but it makes me nervous.

I have very itchy ear canals and throat, maybe from allergies or radiation, or both, a sunburned forehead, heartburn from the alz. drug (.05% chance of that happening), and somewhat painful urination (could be fibrosis from previous radiation.) I sleep hours less per night than usual, and wake up every hour or two, even when I take Ambien, which I used to think was strong. And my hair is starting to fall out.

Today is the last day of radiation, after which I will start tapering off steroids and get very tired. I will meet with the nurse afterwards and hear her suggestions.