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


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.


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!

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."

Monday, May 20, 2013


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. 

Saturday, May 11, 2013

She's not there

[again from Rick Fields]

in the light of death

I'm down at my dad's, which used to be "dad and Chris' " but is not anymore, and will not be again. Absence is the first noticeable thing. The dog is manic. My dad's hair has somehow gone wrong. For many years, Chris was more energetic than any of us, and took care of everything with a quiet kindness and intelligence. I'm speaking of her in the past tense just because she is so suddenly, somehow, not here, and her absence is so felt. She is being very well-cared for in San Diego by her two daughters. We will hopefully be able to see her today once we pick up Kathy at LAX. Apparently she is sleeping now most of the time.

Cousin Ryan, aunt Bev, uncle Roger, and Chris
Had a great chat last night about a variety of stuff with my uncle Roger and aunt Bev who drove down from San Antonio. They have virtually no health problems which I was very glad to hear. That's how it often is in my family. Of course lately, in our immediate family, I seem to have founded the first metaphorical leper colony in an otherwise healthy clan, and some others seem to be joining...

This is an obvious point, but it's funny how when there is death on the horizon, the felt sense of what's important shifts a lot, naturally. I guess I'm pretty familiar with 'conscious change' in the sense of doing certain things to bring about changes or become more aware (that's essentially what Buddhist practice is) and then of course things naturally shift...but this is...entirely circumstantial. You see how in a few months someone's life just shuts down, and the looming fissure it leaves in their world, a world that for some amount of time will limp along without them.

For me it's something about superficial discomforts, a certain automatic amplification of certain signals in the mind. Say, being a little uncomfortable around someone, or getting weirded out in some way by what they say...even disagreement or conflict, however subtle or chronic.

The Dhammapada says:
There are those who do not realize that one day we all must die. But those who do realize this settle their quarrels.
It's essentially this: the content of life is a lot of choppy water (it's the day for finding the right metaphor!) and when you're in a boat and there's nothing else to look at, that choppy water is the deal, it fills one's experience, it is important. But when one is aware of...the vastness beneath and how anything can stop any time, one is not so distracted by patterns on the surface. They seem to have placed themselves into perspective. They start to feel superficial, inconsequential.

How do healthy people deal with it, with their friends and family dying off over the years? Are they just sadder? Is there insight into life and death? Does it make them more loving, more appreciative, or more bitter?

P.S. Here is what I've been putting on my scalp at night for maximum greasy hair effect: Spring Wind Burn Creme

Sugar substitutes

My dad makes lime-ade from his lime tree with limes, water, and saccharin (Sweet-n-Low.)

Here are some of the synthetic compounds added to foods labeled "sugar-free." Some of them (all the "-itols" I believe) are sugar alcohols that have two or three of the four calories of regular sugar, and also work as a laxative for many people. In terms of health, aspartame seems to be the most obvious one to avoid, since most of the funding for studies came from the company that produces it. Saccharin actually might be OK, relatively speaking. There is also some evidence that after people eat synthetic sweeteners they tend to consume more calories. 
  • Aspartame (NutraSweet, Equal - blue packet)
  • Dextrose
  • Erythritol
  • Glycerol
  • Hydrogenated starch hydrolysate (HSH)
  • Inulin
  • Isomalt
  • Lactitol
  • Maltitol
  • Mannitol
  • Saccharin (Sweet-N-Low - pink)
  • Sorbitol
  • Sucralose (Splenda - yellow)
  • Xylitol
Some other names for sugar on labels:

  • Concentrated fruit juice 
  • Crystalline fructose
  • Dextrose
  • Evaporated cane juice or cane crystals
  • High fructose corn syrup
  • Maltose or malt syrup
  • Maltodextrin

Thursday, May 9, 2013


I said somewhere that I'm taking 3 mg of dexamethasone (steroid to counter brain swelling headache caused by radiation.) Make that 6. I am math challenged when it comes to reading medicine bottles.

Anyway I had a wonderful reike session with Tania yesterday and no headache this morning so only took 1 mg, the result of which, internally, is that I feel more like myself again. Misha mentioned today that dex. is very strong. It pushes me out of my body.

My hair looks really awful, like it's dripping wet, but I've been enjoying friends putting the burn cream on my scalp in the evening. I hope, but am trying not to expect, that it will keep my hair from falling out, or help less of it to fall out. 

Fatigue currently crashing its way up to the symptom front lines...

Wednesday, May 8, 2013

What it is, or looks like

One of the technicians took a photo for me today, Day 7/10.

This is what it looks like, which comes as a surprise to me, too, since I can't see anything from inside that net.

After they bolt me in (which is being done by the arms at the right) they line up the laser crossbeam to the bits of tape on the mask. That's how they get my skull in exactly the same position each time.

Then they leave the room and that blue circle, the arm of the machine, buzzes on that side of my head for a minute, then whirs over to the left side and does the same.

Today they 'took some film', whatever that means, confirming the setup I think, so it took a few minutes longer, but the whole deal usually takes about three minutes.

Today we did talk to Dr. Patel, who is a lovely sweet man. Might be the last time I see him. Hope so! Or there could be some 'gamma knife' (very focused high intensity) radiation in my future, to my lungs or brain or somewhere else...

Waxy and puffy

Photo by Garry Winogrand
Taking Misha's advice, I put her preemptive herbal burn cream all over my head. I washed my hair five times this morning; it did not come out. Looks like it's full of "product" and leaves an orange stain. Ah, and a brief look at ingredients reveals: beeswax.

It is unclear whether or not my scalp will actually  end up being burned. My guess is that it will. I just have to decide between a burned head, weird waxy hair, or prematurely cutting it which would help with the burn cream, but potentially show more bald patches later. Tonight Hridayashri put it on my head which I think will mean a lot less ending up in my hair...

Got thru day five of radiation with Karunadevi, so half way there. The mask, which I will try to get somebody to take a picture of, seems to be getting tighter. When I mentioned this to the technicians, they said it's probably the dexamethasone making my face puffy.

At Rainbow Grocery there wasn't a single can of tomato soup without added sugar. It's not that I am not eating sugar. I've gotten more lax with that - it just bugs me now, unless I'm eating a piece of cake. Looking up Campbell's tomato soup I see that one can contains the same amount of sugar as a Snicker's bar.

Nancy's roses
I asked the other day to become what is called an "anagarika" (anna-GAR-ika) in our Order, which means taking an extra precept. Literally it means "one without a home." It pretty much means adopting a more monastic or simpler type lifestyle, or in my case making formal what I am already doing. Another way of putting it would be to say making a formal commitment to stillness, simplicity, and contentment in all areas of one's life. (You know, as a work-in-progress!) There are various obstacles to doing the ceremony in this country, including that there are no anagarikas in our tradition in North America. (It doesn't have to be done by an anagarika, but that's what makes sense to me, and if it doesn't happen I don't mind.)

What with my radiation and acupuncture schedule, getting out to look at places to live is challenging, though it's still on my mind. A brief sweep of Craig's list in the city reveals that one-bedrooms are around $2,500. Going to have to be further afield.

Going to So. Cal. this weekend to see my dad, my step-mom Chris, and Laura who has been staying down there.

Overall, today, felt incredibly blessed.

Sunday, May 5, 2013


I'm up in Lake County with Hridayashri. It is wonderful up here. Yesterday was very hot and sunny, today is much cooler and overcast. This morning we walked down to the bog and listened to the tonal cries of redwing blackbirds.

I did get a headache yesterday and still had it today, which is disappointing. Maybe this is just how headaches are, I'm not sure, I've had very few. It's not just that there is an ache in my head. It's that my head feels sore and tired and it doesn't want to do anything, ordinary things seem a strain. And it's somehow barely being held up by my body.

But 3 mg of dexamethazone later I feel fine. I'm sitting out on the deck, surrounded by pine, cedar and oak trees. It is very quiet, a few dogs barking in the distance. A crow flies by and I can hear rather loudly it seems the beat of the wings.

Tacos for lunch with fresh eggs from next door, garlic, shiitake, salad, and aduki beans.

Stopped at Harbin Hot Springs on the way here on Friday. Lying down on a bench there in a little cove, I started touching both sides of my head, and I burst into tears. Which is very good for me. I need to come back to my body again and again, not as a maze of unpredictable symptoms and speculations and pains, but as it is, as it feels, as a hurt friend.

Friday, May 3, 2013

Yesterday, and rental criteria

A gathering of nice folk with Sanskrit names. 
Very nice time last night, dinner at Dhivajri's with people you may not know, but it was relaxing with great food, and I surprised myself being able to carry on some level of conversation.

Earlier, lying on Misha's table, I was reminded of that scene with the blood-filled elevator in "The Shining". When the doors slide open, it comes pouring out in slow motion, pounding out a river down the wide corridor. A voilent image, but for me it was more about the chemicals that seem to be pounding through my body, and hugely impacting my mind. It's such a strange experience of myself, I can hardly begin to describe it. It does involve energy. Lots of manic and possibly somewhat optimistic energy, and a kind of bodily confusion.

Besides whatever is caused by the brain zapping, the chemicals are Ambien (zolpidem) for sleep, Memantine (namenda), an Alzheimer's drug used for retaining more brain power after radiation, and dexamethazone a steroid against potential brain swelling. Dr. Patel just called and said if I haven't gotten a headache or anything after this weekend, I can stop taking the steroids on Monday. (Tapering down until then.)

Karunamati (psychiatrist) who is visiting from the UK/Nepal suggested I ask to speak to a neurologist and get tested for cognitive stuff. It's a good idea.

Someone asked me what "the peninsula" is. San Francisco is on a peninsula, yes? The part that's just underneath (south) of San Francisco is called "the [rest of the] peninsula," the pink part on the map. The airport is there. Parts of it are like the Russian steppe with strip malls, parts are rather urban, parts quite rural and hilly, like where we go on retreat. Belts of fog criss-cross it. Very different topographies and climates on the peninsula.

Thanks to those who have been looking at Craig's List for me! It's awesome. I can't go see anything until after Monday, and I don't know what shape I will be in then in any case, but here's what I'm thinking:
  1. Location: Depends on what's out there, so at this point, hard to be specific. At the mo, hoping something suitable on peninsula, and if not, wondering about places in or near Santa Cruz mountains, and the East Bay. 
  2. Good weather (not in a fogbelt).
  3. 2 or 3 BRs. 
  4. Up to $2500/month. Might be flexible. 
  5. Lots of trees.
  6. Quiet/private. No shared rooms.
  7. Ground floor? Some stairs are OK. 
These things would be even more awesome:
  1. Near public trans. esp. BART train. 
  2. Prefer older places rather than new, and wood/floors rather than carpet.
  3. Garden/yard.
  4. “Single family dwelling”, not an apartment. 
  5. Rural feeling involving trees and dirt paths.
  6. Near medical stuff?

Wednesday, May 1, 2013

Radiation was weird

Stumbled in there after sleeping 4-8am, and nice people started doing things to my head, most of which I couldn't see, but I could feel the ratcheting down onto a table, and machines making noises, whirring around, and people posing cheerful questions to me when I am essentially gagged. There is not much effect or side effect, it seems, 'til after it's over.

Upon removal of the ratcheted mask I looked like a Star Trek character; felt a bit like one, too. Then multiple snafus trying to get prescriptions filled at the "convenient" pharmacy down there (South SF), which was a bust. Did you know that snafu is a military term from World War II? It meant "Situation Normal--All Fucked Up."

I'm going to look for a house to live in, 2 bedrooms, on the peninsula, but can't really look at anything until after this weekend.The East Bay is a lot cheaper and I could probably get something twice as big, but right now it feels far away. Marin seems good for what I'm looking for, too, but even further away, and no train. Need to see what's available. Here on our little peninsula we seem to have a mental barrier to crossing bridges, or some of us do.

Going to be seeing Misha a lot more over the next few weeks.

If anyone would like to take me to radiation tomorrow (Thursday) that would be fine, if you have a car or can drive a manual transmission. It's at 11:30 at Oyster Point. (It's fine for me to go on my own, too, especially the first week.)

Anatomy and non-anatomy

Dr. Patel and my brain
When there are more than three brain mets, the risk that there are other mets too small to detect is very, very high. That's why they are going to zap the whole thing. (I have about 15, some of which are tiny, and one is 3cm wide.) The dosage - or is it voltage? - is lower, and overall it sounds like it could be less problematic than the five weeks of pelvic radiation I had before.

He asked me to do all sorts of things to test balance, etc., and I passed it all with flying colors: no symptoms of brain mets whatsoever, and no swelling showing up on the MRI. And yet I am taking steroids (reduces swelling) that knot up my chest like a vise grip, and that's with only taking half of what I'm supposed to for the last few days. After a week of radiation, if there is still no swelling, I can stop taking them.

I won't go into too much detail on the possible side effects. Primarily skin irritation, hair loss (in a "reverse Mohawk pattern" - awesome - mostly after the radiation is finished), and some loss of cognitive function.

He asked if I want to try a drug called Memantine for six months (remember the radiation is only for 10 days!) It's a drug developed for dementia that reduces cognitive decline from whole brain radiation. (If you want to read more about it, here's an article.) He suggested it for me because he expects that I might actually live long enough for it to matter whether I have reduced cognitive function. We were all a bit surprised to hear this. I suppose that I still seem very much alive, and doctors seem to think this means something! In any case one patient he tried to give the drug to couldn't handle it - it made her dizzy.

I told him I was worried about my lungs going wrong while we're working on the brain stuff. He said I could conceivably start chemo a week after radiation is over. Kind of wonder if I'm going to have the stamina for that, but maybe that will depend on how my lungs feel.

Clarion alley
I went over to Oakland today and got a shamanic healing from Alan. It involved a lot of sound, and it was a really wonderful. It brought me back to my heart, which is easy to separate from now that it feels so amazingly tense. It brought me back from the realm of the purely practical and anatomical, to a feeling of deep relaxation, tenderness and love.

Another very full day. Started the meditation course with Hridayashri and Robin tonight...and texts and emails and scheduling between everything else...