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. 

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. 

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

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.

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.

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!

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.

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

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

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.

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

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.

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.

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!