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,
walking brain sent by Dhammagita

Monday, June 17, 2013


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


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