Monday, April 29, 2013

Brief

Super long day today, and I am bushwhacked.

Will write more tomorrow (and post a picture of my brain!) but for now, the short version is that we met with Dr. Patel, the radiation oncologist. I will be getting "entire brain radiation" - which isn't exactly entire brain radiation because it misses the parts that are important to miss - starting this Wednesday for the next 10 weekdays, so May 1-14.

It's actually much less scary once you talk to the doctors who deal with this shit all day, like it's normal.

Thinking again about moving out of this room and this building, which I'm realizing is a bigger deal than I thought, almost a small death in itself.

If you are reading this, I love you.

More tomorrow.

Sunday, April 28, 2013

Minor updates

Here's a nice photo with Dayamudra during a Sunday wander around the neighborhood, which was wonderfully warm.

Friends have found some great sublet options. One hold-up is I don't know if I will need to be relatively close to South San Francisco where the radiation will happen, possibly daily...for how many days? I hope to know much more tomorrow.

Blog copying request all sorted out.

Feeling more congestion in my lungs. There is stuff I can do about it, but not motivated the last few days.

If you ever get a chance to give a talk at the Gay Buddhist Fellowship, do it. Such lovely men! I'll post a link to the talk here (once they post it.) 

Saturday, April 27, 2013

A kind of goodbye


Took Paramananda to the airport yesterday, after spending the evening and half a day at Half Moon Bay and Pescadero.

We talked about death some, my death, but not a lot. It was mostly just the easy kind of being and conversation that happens with a close friend, and the subtle sweetness and sorrow of knowing that it is probably the last time.

(Rick Fields: in the light of death/
everything/shines!)

I was telling Julie the other day that sometimes I feel as if I have some kind of contract or agreement with people that I am going to be around at some later date. I will work with you on this or that retreat in two years, or in a several years I will be there to help you with something, or do some project...a hundred little things. I couldn't even say what they are until I'm with the person and I am reminded of what I was planning on being there for that I am not going to be there for. Then I feel that I am bailing out on all that, on all these assumed RSVPs suddenly coming out of nowhere. And I feel bad, even though there's not a damn thing I can do about it. Not that hardly any of this is even conscious.

I'm feeling a bit sad today and that is probably coming out here.

I'd like to get a sublet somewhere leafy and not foggy on the peninsula for a month, but not sure I'm going to be able to manage to look for and/or find one. Sometimes it seems that it is too late.

If anyone out there wants to copy and paste my blog entries (text only, not photos) in chronological order into a document and send it to me or Vidyadevi, that would be super helpful. (Currently the order is backwards if you know what I mean, it begins with the most recent post, not at the beginning!) Lisa Kee graciously did this up to December 20, 2012, so we need what's after that. Just doing one month would be helpful. Vidyadevi and I are starting to work on book editing again. Yay!

This morning, this came in an email from a friend in London:

The space in the middle [between double rainbows] is called 'Alexander's dark band'. I was very struck by that when I first discovered it years ago, and have felt so often that I am in Alexanders dark band - the space between rainbows which is darker than all the surrounding sky. Thought then that you've probably been feeling a bit dark-bandish lately, especialy hearing about the cancer in the brain. It's very hard to remember when you're in that dark band that there are rainbows all round you. So the last photo is to remind you that there are rainbows. Big glorious glowing rainbows.

Thursday, April 25, 2013

One thing, another, or both

Photographer Jo Spence
(don't know title)
Waking up at 5 this morning I thought of Roseanne Roseannadanna from the old Saturday Night Live shows. She would say, “If it ain't one thing, it's another.” Too true. Lately, seems like it's both things. Probably was both at some point for the comedienne, too, who died of ovarian cancer.

Did I mention that when I talked to Dr. Nelson she was emphatic about me picking up a prescription for steroids (dexamethazone) that day. She wanted me to become a professional baseball player! Wait. That wasn't it. It was something about brain mets being associated with swelling, and also that I'd need to be taking them 48 hrs before getting radiation. So I'm taking them, and I was kinda happy because they give you energy, but much of the time, you're still tired, just that relaxing isn't as relaxing. I will probably be getting more exercise though so that is good.

I've gotten several sweet emails I want to post sometime.

And I want to write about my last convo with the social worker, and related thoughts about what goes on when people tell me they want to help.

Remembered (but did not have documented because of losing calendar) that I am giving a talk at the GBF on Sunday! Which feels like kind of a big deal. I will come up with something!

Wednesday, April 24, 2013

Great scott!

I looked at the MRI report, and decided not to post it. Suffice it to say, the stuff in my brain is not minor. The appointment with the radiation oncologist is Monday afternoon.

A friend told me that I seem more grounded since I was diagnosed, which is probably true. I feel for people who are dying who can't face their own death, even to talk about it. They are missing a lot.

Drinking lots of corn silk tea to keep away the bladder pain (similar effect to D-Mannose.) And taking citrus flavenoids. Both suggested by Misha.

Prasadacitta helped me with some yoga poses yesterday. I think I need to do them every day, or else my lungs feel, it's hard to say, smaller I guess, less spacious, to the extent that it changes my voice slightly, a bit higher, shallower. 

Just took Paulette to the airport. She got my car detailed so now it's a cough-free-zone.

Just got to the section in the wonderful lectures entitled "The Secret Life of Words". I haven't listened to it yet but it's about war metaphors used in reference to disease. 

Tuesday, April 23, 2013

Brain mets

...Ensure for food
Morphine for pain
Marinol for appetite
Kytril for nausea
Advil for sleep

Sit on the toilet
Shit and vomit at once

O This is ridiculous
And still
I'll sing my song. 
from Fuck You Cancer, Rick Fields
Photograph of a photograph
on the 4th floor at Kaiser

I was going to write about how cool it was talking to the social worker Carol Gerstein yesterday, and some details about the areas she helped me with, which were HUGE for me, like a burden had been lifted. For that and other reasons, I got out of bed this morning feeling profoundly happy. Which is a good thing, because when Po and I were at Rainbow Grocery this afternoon, Dr. Nelson called and told me that the MRI showed brain metastases (several).

Though she left everything up to me about the chemo, getting radiation in my brain came with a strong recommendation. I told her I'd do it. Of course, I have no symptoms as yet, which is always very strange, until you think about the alternative. She said she didn't want me to start developing those kinds of symptoms. Nor do I. Three main things to look out for, and as she was telling me, I thought, Damn, I'm only going to be able to remember two of them. And so it has come to pass: headache, losing balance...Paulette and I conjectured that the third one was probably memory loss!

She sent me a copy of the report but I can't quite face it now. The big bummer news from my point of view is that I will in fact lose my groovy hair with the radiation. I don't feel that there's a real choice.

In a way, this news changes things. You think, Can this really be happening? Really? To me. But in another way, my overall situation is largely the same: body astonishingly riddled with bits of cancer, and the biggest bits are still in the lungs.

Monday, April 22, 2013

Reducing toxins in death

You'll probably think this lady is pretty out there, but the factoids in this TED talk (7 minutes) about toxins, burial and cremation are interesting.

Jae Rhim Lee: My mushroom burial suit


"Extra" by Rick Fields

Note that you may not 'get' this poem unless you are familiar with the writing of Shunryu Suzuki.

God is extra
I is extra
Extra is extra


Also like these lines:

Funny
how
in the light of death
everything
shines!

Cancer and the Preciousness of Life

I've been meaning to post this talk for about six months. Thanks for transcribing it MJ! 


It’s funny, it occurred to me during the meditation that, I think it’s been a couple of years since I’ve been here, but I don’t know, I definitely see some familiar faces. I see, actually, your lovely group of men I’ve come to talk to. And I think that last time I was here I talked about patience. So I’ve had quite a lot of opportunity in my life to work with that since then.

But I wanted to start out reading a little paragraph by a poet called John O’Donohue, who you might have heard of. He says, “Eventually even the strangest things become absorbed into the routine of the daily mind, with it’s steady geographies of endurance, anxiety and of contentment. Only seldom does the haze lift and we glimpse for a second the amazing plenitude of being here. Only seldom does the haze lift and we glimpse for a second the amazing plenitude of being here. Sometimes unfortunately it is suffering or threats that awakens us. It could happen one evening. You’re busy with many things, netted?? into your role and the phone rings. Someone you love is suddenly in the grip of an illness that could end their life within hours. It only takes a few seconds to receive that news, yet, when you put the phone down, you are already standing in a different world.”

So I have been standing in a different world since I last saw you. I was, I had a Skype call with one of my sisters who lives in Singapore and I was talking to her last night and she seems to really continue to be astonished that I’m not seeming to suffer more than I am. And in some ways I am suffering less in that I actually have less anxiety than I did before I was diagnosed with cancer, which is this sort of punch line, of sorts, in January, an advanced stage cancer. The staging was at the stage 4b. And once I was talking to a social worker and I told her that I wasn’t particularly afraid of dying or I just didn’t feel that aware of being afraid of dying, but I had more fear around sort of quality of life questions and whether I would be disabled in certain ways, either by the cancer or by the treatment. And she said something interesting. She said that spiritual people or people who pray or meditate, she said pretty much all of them spoke about it as I was speaking about it. But she said a lot of other people she speaks to were even unable to utter the word “death.” It just simply they could not think about it, talk about it, anything. So, yeah, I don’t know, I actually, I felt like I had a great deal of compassion towards those people because that situation sounds extremely painful to me, to have this sort of thing looming that you can’t talk about.

So I thought what I would do today is just say a little bit about how this journey has been for me and just offer a few reflections, but I also want to save a little bit of time at the end to hear what any of you have to say on the subject. I’m sure that there is also a great deal of wisdom in this room.

So I’m not just not quite sure what angle to take on this, but anyway, so just to briefly summarize, so in January you know, a malignant tumor was discovered just below my cervix and there were many scans and appointments and things that happened after that. So I had a tumor, and it was moving into my bladder, and I also had it in my bones in my hips, so it’s basically a lot of cancer going on under my pelvis. And a couple of weeks after I found out, I hopped on my bicycle to go somewhere and just screeched in pain because my sit bones were really painful, and I started not being able to sit in normal chairs. And I stopped being able to sit as I’m sitting now, which was possibly the most disturbing of all.

Has anybody seen that movie 50/50?  So the guy in there, it’s a good movie, the guy in there,  the star in the movie, is given a 50/50 chance that all this treatment that he is getting is going to work. And the type of cancer that I got is so rare that there’s no information about it. So it was just a, I was just told by very, very many nice people, “Just wait and see. We’ll do the treatment and we’ll just see what happens.” And I’d be like, “Well, what are the odds that, say, in five years I’m going to be alive?” And it’s, I don’t know, I don’t know. I think one, I think one guy actually did say 50%. But it sounded like a completely random sort of guess, so I didn’t take that much stock in it. And, yeah, I was just, I was 48 at the time, I had had virtually no health problems in life, sleep really well, healthy digestion, all that stuff.

So, you know, when I’m talking about it, it feels like a kind of heavy topic. I would be, well it would be a great disservice to everybody if I didn’t say that it had many, many benefits for me. At some point I remember I was walking with my friend and she was going to a lot of appointments and stuff – for a while I had appointments every day or twice a day, and I was kind of walking along with her and I was thinking, “Do I feel happier since I got diagnosed with cancer?” And I was kind of like, “It kind of seems like I do.” And she thought that was really weird, as do I, but I did want to talk about some, yeah, some of the benefits, just because it’s something that happened. And I have become much more loving since this happened and I have experienced a lot of people expressing their love for me, and I suspect sometimes it might be because they wonder if it’s the last chance they’re going to get. But whatever the reason is, it’s lovely. I really, I really enjoy my time with people. I’m not, I feel like I’m a lot less stressed out than practically anybody around me, I feel like there’s so much angst and stress and stuff that people are dealing with.

Sometimes people don’t want to tell me their problems because they feel like anything they could be going through is just silly compared to what I’m going through. And I always say, people are suffering and I’m tired of my story, so let’s hear your story, and you know, sometimes it sounds terrible, you know, like. Somebody who’s just worried about money all the time, like, I don’t know, I just  feel like I have a bit more time for that, and just for other people. And also, just life. I really, I enjoy, yeah, I mostly, I enjoy my life, you know, when I’m not suffering , sort of drastically from the treatment I was getting. I mean I’ve got a lot of issues that emerge. And, by the way, everything that you see before you now, is totally fake. (Laughter) There is nothing here that is ?? sort of real person. It takes a while to put together too, I tell you.  (laughter)

Yeah, and you know a lot of people, I mean I’m sure people in here have had cancer, or have cancer; we’ll probably hear something about that later, their trouble, like that. Although sometimes you know when people are trying to be supportive, they’re, you know they’ll say, oh, you know, they talk about the fight. Like, “You’re going to fight this, you’re going to kick ass on the cancer,” and all this stuff. I’ve just never really thought of it that way because I feel like it’s my body and I don’t want to fight for my body. As the Buddha tried to teach, anything that happens, anything that we can describe about this room, or any thought that we have or anything, is arising out of myriad conditions, some of which we can be aware of and really understand and experience and some of which we’re just never really going to have any idea.

So I feel like that’s what happens, and I, you know I’ve gone through, I go through all kinds of stages with that , like, this thing about what should be happening, what should not be happening. I mean I think in a way this is very basic Buddhism, and for me that’s kind of morphed into, well, maybe it should be happening, but not right now. And I, because you know my doctors comment a lot, and so I’m 49 now and my doctors comment a lot that, how young I am. So finally I was talking to a doctor and so I said, “So when you say I’m young, do you mean that I’m not like 70? Is that what you mean by young?” And he said, “No, I mean you’re not 85.” And I was like, “Oh, okay.” (laughter) ??? So like, this isn’t the right time for this to happen, like this is something that I’ve worked with a lot. And I feel like I’ve mostly just said, “okay.” I mean I know my sister sometimes comments when I talk to her. I feel like I have pretty much completely accepted that this is my situation. There’s nothing wrong with it from a certain point of view, it’s just what’s happening. And again, like I said, it’s allowed me to occupy my life in a way that I feel like I wasn’t quite doing before.

And I also feel like you know, if you have cancer or some other kind of debilitating illness, and you’re fighting it, and you’re thinking like, “I can’t die, like I’m not going to die, dying is not an option, no, no, no, no, no,” that just means, you know, I’m sure a lot of people think of that as a very positive thing. But I think that’s just basically, what you’re saying is, you have to live in fear of something that you virtually have no control over, and you have to pretend that what is real is not real, that what is a possibility is not a possibility, you have to act like you can absolutely control that. And you know, I’m not even saying, maybe that’s useful for some people, I just have to say I can’t think of it that way. Because it’s like, choose life, and we can choose life, but if life doesn’t’ choose back (laughter), I mean it’s kind of like it’s up to life. Life gets to decide.

So I feel like I have had to let go of my life in some way, you know, which is sad in a way. But in a way it also feels kind of liberating, and it also feels like, I also feel totally engaged with my life and with people.  It’s just that I feel like, you know, if at some point I need to just let it go or when I need to let it go, I at least feel like I will be able to do that. But who knows what will really happen?

So I’ve had two rounds of treatment. The first round was in January, February, March, and it was radiation every day and chemotherapy once a week. And I had metastases, so it went into my lungs, so I had kind of a break and then I started chemotherapy again. But I’ve had, I had ?? an exam last week, and so I’ve got it confirmed, I’ve had it confirmed several  times that all the cancer in my pelvis is completely gone. But then, so now the chemotherapy is where I have these little nodules in my lungs. So we’ll see what happens with that.

My biggest fear is not dying. My biggest fear is getting to a point where I keep having things cropping up here and there and having to deal with them and then at some point having to just say that I want to stop treatment and then that, like, dealing with my family and stuff. Like, that’s kind of like the eventuality that I… And you know it might not happen. I’ve responded very well to treatment. I don’t know. But it’s very interesting, this whole idea about not knowing. Because I find that when I say that I don’t know, there’s a meaning on one side or the other. I can just go like, “I don’t know what’s going to happen. Nobody’s given me any data. I’m just, here I am, I’m just going to see what happens.” But I find, you know, on a given day or a given week or a given whatever, I’m kind of going, “Yeah, but it’s never gonna go away,” or “Yeah, but I think it’s fine.”

There’s always this very subtle kind of trying to know what’s going to happen. Which I think applies to possibly everybody. We all think that we know what’s going to happen. We all have some idea of how long we think we’re going to live probably. Maybe a lot of us think we’re going to die of old age or something else. Actually that brings up another weird story that my friend was telling me yesterday, which was that her sister went to a doctor for like, I can’t remember if it was stomach pains or chest pains, and the doctor said, “Oh, you know you think it might be some kind of anxiety.” And she said, “Well, I am kind of worrying about dying of cancer,” and this was, I tell you, this was my kind of doctor, maybe not everybody’s kind of doctor, but the doctor said, “We’re all going to die of cancer.” (laughter)  Oh, you’re a real nurturer, aren’t you?

But anyway, so, it just points to the fact, of, you know, we don’t know what’s going to happen. But in a way, I mean, especially, you know, our lives are probably fairly stable, and it’s like, well, “Yeah, I could die today, but odds seem pretty good that I’ve lived this long and things seem pretty stable,” but, you know, we don’t know with any plans we make if we’re going to be able to actually do them. And I think there’s something that’s really, yeah, there’s something from, I think it’s Padmasambhava, who said, what was it, “I do not know, I do not have, I do not understand.” And I feel like there’s really something in that for me, something that really. It’s not like you go bumbling around, like you don’t understand anything. More that, just allowing, basically just allowing possibility, just allowing this potential all the time, and allowing to, allowing us to respond creatively to the actual moments that we have, rather than what we  imagine them to be, or what we very deeply want them to be because we want to continue, and we expect to continue in some way, and we expect other people to continue. And I think most people sort of think of that situation as being tremendously sad, and there is, it is sad. It’s also, or it can be, just very, create a very, a very beautiful, almost magical experience of what it means to be alive, how it feels to be alive and really living that, which I don’t profess to be doing, but I feel like I’ve got a little taste of that somewhere.

I was on a retreat, no idea when it was, it might have been last summer and we were doing this, it wasn’t a silent retreat, we were doing this very strange exercise that would be very hard to explain. But anyway there was a group of people sitting down and a group of people standing up and the standing up people would whisper something, their deepest wish, their heart’s wish to the person sitting down and they would switch. So everybody who was standing whispered their heart’s wish to everybody who was sitting down and then switched. And other than it was confusing and people kept getting lost, (laughter) and some people heard the wish twice and all that. Besides all that somebody said to me. “Love is literally everything.” And I just, well, actually the first thing I thought was, “Well my wish was really dumb compared to yours.” (laughter) But then after that, yeah, and I feel like that kind of just goes with my whole theme of during this time.

So I have on October 5th, I do my last round of this chemotherapy that I’m doing, and that’s just kind of, I’ll see what happens after that. So this is, that’s been my year of pondering these things. And yeah, it really has been really wonderful in many ways and I, I mean I think it’s funny, I always think when that, I say that, I’ve got this devil and angel on your shoulder and I don’t know which one is saying this, but one of them is saying, “Oh, god, like don’t be an optimistic American. You know, like, everything’s great, I’ve got cancer! I love this!” (laughter) So I don’t think that’s what I’m doing. But I, you know, I guess I’ve just been so, personally so surprised by the benefits that I have gotten, in my life, that I, you know, I maybe do tend to be a little bit emphatic about it.

But you know there’s also, well why don’t we just balance out the situation. Okay so there’s also, like people telling you that if you eat tumeric, you will cure your cancer, because that’s what their friend did, and you know, other things, drinking hydrogen peroxide and all kinds of stuff. Actually people have kind of stopped doing that for some reason cause I’m like, “Shut up.” (laughter) I’m like, “Really? That sounds great!” (laughter) And you know, actually, that phase has kind of passed. So some things, obviously some things are difficult, when I get into, when I get into, I can get into worrying about stuff and I usually just say, “Okay.” There’s a ?? of Shantideva, a great sage, I think I may have mentioned actually the last time. I’m sure you’ll all remember, when I was talking about patience, but he said something like about, he said the most brilliant thing about worrying. He said, “If there’s a problem that can’t be solved, then why should you worry about it, and if there’s a problem that can be solved, then why should you worry about it?” So mostly, and you know you can tell yourself that and beat yourself up because you’re worrying and you shouldn’t because Shantideva said not to, but I feel like most of the time, I can, I can do that, and just, yeah just go with what’s happening and not worry about all the other stuff.

All right, let’s see if I have anything else on here. I think that will probably do. Maybe I’ll just end with a little bit from the Anguttara Nikaya, which says, “I’m sure to grow old. I cannot avoid aging. I’m sure to become sick. I cannot avoid sickness. I am sure to die. I cannot avoid death. All things dear and beloved to me are subject to change and separation.” And, again, it might seem, it might not seem relentlessly optimistic, but I think what’s optimistic about it is really accepting that and just working with the actual conditions that we have rather than ones where these things don’t happen and things being driven by fear, rather than things being driven by wanting to know this, because this is a huge part, if not all of the beauty of what we are given as human beings. Yeah.

So I guess I will end my bit there. And let’s go in this direction, starting with you there.

(audience member 1)
Your appearance may be fake, but your spirit is true. And as a physician and also someone  who’s had cancer, I just have a couple of observations that you will reflect. There’s a study during ?? where people who were given?? stage they might die that did much worse than if they were given an open window. And that’s probably due to the fact of, when you have that open window, you have hope, you don’t have that anxiety. And another I think very big part is that when you can let go of control, you can let go of anxiety, you can open your heart over what’s happening around you and that allows you to enjoy things that you may not have seen because of the blindness that’s there. And that’s a really big part of making the most of your life and enjoying your life and enjoying the moments and being as real as you can be with people around you and open to what they have to give you as well. And what you say really reflects that. And thank you for sharing.

(Suvarnaprabha)
Thank you.

(audience member 2)
Thank you for being so transparent and genuine in this. It’s a great gift.  So I find that most of my worries and concerns relate to the future -- saving enough money because, you know, I assume I’m going to live long and taking good care of my health because I assume I’m going to live long, and you know, creating strong bonds and friendships because I want people around me, because I’m going to live long. How would you say having the future effectively removed from the equation contributes to this sense of calm and peace and joy that you have related to us?

(Suvarnaprabha)
Yeah, I think that that’s absolutely it. If you, if you don’t know if there’s going to, if it’s very unclear if there’s going to be a future. I mean, unless, then the big worry is not having a future and if that’s a huge issue as well. So I suppose it could kind of go either way? And I’ve noticed that a lot with people. Yeah, putting aside money is a big thing, and what you’re doing about your health and all that. And I think all those things, you know, we do have, all of us have a future. So, in a way it makes sense to do those things. I suppose there’s something about, I guess to me there’s something about the light touch of.. And besides I hope there’s better ways to do this than getting cancer. But somehow just having that awareness that, “Okay, I’m preparing for old age in whatever way, and also, I don’t know if I’m going to get to old age. I don’t know if my friends who I’m bonding with are going to  get to  old age. And somehow just having that more be a part of that reality. And also realizing that anxiety, I think in a way, I think being aware of anxiety is a really positive mindfulness practice. Because I do feel like since I’ve kind of chilled out and said, “Oh, I might be dead in a while, you know, whatever,” I feel so much anxiety from people and it just, it seems so painful. So I guess, just, and in a way, just looking into that, what  is that about, what is it that I feel that kind of has to happen, or that I… what is, what is the fear. And really looking into that fear. Yeah, something like that.

(audience member 3)
Well, first I wanted to thank you for your generosity and courage in coming and sharing this with us. And I’m strongly ?? quiet because I’ve gone through two of these so far without, with okay consequences.  Four and a half years ago with prostate cancer, which I decided eventually to do nothing and now it seemingly is gone away. And a few years ago, with colon cancer, for which I was operated on. Three days ago I just got my second year CAT scan and now it seems okay. And my experiences with that are that it has. First of all, I make judgments about myself, critical judgments.

(Suvarnaprabha)
Like what kind of judgments?

(audience member 3)
Well, I’ve increased my generosity and my forgiveness and my gratitude, but not as much as I should have. (laughter)

(Suvarnaprabha)
That’s true of me by the way, too. Yeah.

(audience member 3)
And secondly, there are moments I’m walking outside and I say, “Wow. It’s so beautiful,” just the trees and flowers and I’m really noticing the present. But then I go back to being mindless most of the time. And another piece is one you just talked about, which is anxiety, so I get you know 3 or 4 month check-ups and this goes back to 1983 with HIV check-ups and every time I go through this, you know, intense anxiety and I think I shouldn’t be doing that. It’s wrong. I am going to die anyway, so what is it?

(Suvarnaprabha)
You shouldn’t be having the anxiety.

(audience member 3)
Right. And so I think what you said is what I’ve come to in my saner moments. And also the other thing about anxiety I also think is true, this was some of Buddhism. First of all, it’s not wrong to have it, it’s just sort of what arises. But secondly, if you examine it, how does it feel in my body, what’s going on in my mind? Lo and behold, it generally disappears. And a third piece is that at least for me I think this is pretty widespread, our anxiety level doesn’t have much to do with the level of the threat. Saber-tooth tiger, a rash on my finger (laughter).

(Suvarnaprabha)
Same thing.

(audience member 3)
And so it’s encouraged me to do more practice. Though I’ve also noticed that meditation is not one that I’m very, I don’t seem to be able to advance much on but there’s other kinds of ways of practicing. And the other thing is I’ve become a volunteer at the Zen hospice, which I’d been thinking of for years, but finally I said, “All right, I should do this.” I did this a year and a half ago, and I’m still there. And that’s about, And when you come to terms with death in some way, I think it’s desirable, or I should, probably more bullshit, to be able to just accept it. And then there’s the annoying little thought, but what if I’m hit by an earthquake or a car, like that, you know, and all of this effort will be useless. So those are some experiences.(32:48)

(Suvarnaprabha)
Yeah, there’s a bunch of interesting things in what you said. I think one of them is, it’s like when even wisdom or Buddhist practice or whatever you want to call it, then becomes this stick with which you beat yourself for being too anxious, or whatever. I think that’s like a really great thing to bring into awareness as well. And you know when that arises, look at what are the conditions for that, what kind of conditions give rise to that. And in a way I do think there’s a sense of, I mean you know you can kind of go wrong with this, but there is a sense of like everything is fine the way it is. Or at least it makes sense, the rules and how they apply to each of us, and to how we are, and what’s happening with our body and the way we think. All these conditions are coming together. And so we can try to create, you know, try to be creative with the conditions if we want to maybe have a bit less of that beating of ourselves and all that.

But I mean in general, like working at a hospice sounds like a great thing to do. I had a really, I’ll just say this very briefly, I, a friend of mine takes care of a 91-year-old woman who’s been in bed for 10 years and she’s just a lovely, lovely woman, and she’s super Catholic. She’s from Belfast and she prays for people. She is concerned with suffering and when she knows somebody’s suffering she’ll just pray and pray and pray for them. And this is somebody who can barely move. And I just really, I mean I could’ve gone and visited her and said, “God, I am such a jerk. Like I have no problems compared to this lady. What’s the deal here?” But I didn’t do that. I thought, “Wow. I can walk around. I can totally walk around. I can walk for two miles. And what a blessing that is.” So I think also in a way just being around people, I mean we do, we do, it’s a form of conceit in Buddhism. We do compare ourselves to other people. So if we’re around all these people running ?? lungs, you know, whatever, we’re going to feel really sick and disabled? If we’re around just a big range of people, because there is this huge range of ability and illness and sickness. A lot of times in this culture I think we hide away, maybe people who don’t live up to  certain standards of youth and beauty, so you just end up feeling like a jerk all the time. Anyway, too many threads that I can’t keep track of, but thank you. That was interesting, what you said. Okay, you’re next and these two. I’m not sure how much time we have, but yeah. (35: 36)

(audience member 4)
Thank you for sharing your story with us. I’m glad I’m here and was able to listen to you. When you said ??about what is happening to you, you said something that I connected to. You said that you’re not afraid of dying. I’m not afraid of dying either ?? many times. However,  I’m 41 years old. I just turned 41 a week ago and during this time I have seen so many people dying around me, I became friendless, they all died. ??was fully dramatic seeing them dying . He did not want to die, he wasn’t ready to die, he had family. ?? “I don’t want to die, knowing ??? Why is that you’re not afraid of dying. I want to compare your thoughts with my thoughts ?? why are the reasons, one or two reasons  that you’re not afraid of dying. ??

(Suvarnaprabha)
That’s a very interesting question. I guess that the first thing that comes to mind is that I don’t, apparently people in this situation have a bucket list. Like before I die, I must visit Sweden, or wherever, and (laughter). And I, there are places I’d like to visit and there are things I’d like to do, but they don’t seem that important. I guess I just feel like death happens, and I’ve had a good life and I don’t have a choice. If, if , but you know, I do take very good care of myself, also, so, but if that’s what happens, I don’t have a choice. And I also think, you know, life is hard. We gotta deal with a lot of stuff all the time, zoom, zoom, zoom. Death, I’m done, you’ve got to carry on. (laughter) And I might look disgusting when I die, but I don’t care, I’m not going to see it. You guys are going to have to look at it. (laughter) So, anyway, that’s kind of off the top of my head, but how about yours?

(audience member 4)
I think I have ??I have love, and I have been loved back. I love my family and  my family loves me. I can just die ?? I am who I am.

(Suvarnaprabha)
Thank you. There are two over here. What ??

(audience member  5)
Part of my journey around life has been to embrace grief as loss, and I felt like I came here to sort of just volunteer as a support person with the AIDS epidemic, and the reason why I came is because I felt like I was fending off grief and loss and that that was so much a part of life that I couldn’t allow myself to feel it and feel alive at the same time. So I just wondered what part of that experience has played in that process of your illness. Like, ever since the last line I think of that quote you read about that the things that we love are going to leave, we’re going to leave. And then there’s that gap in between loving and leaving.

(Suvarnaprabha)
Right. I haven’t experienced a lot of death of other people in my life. And I’ve had to navigate saying, you know, “It’s cool, I’m cool with dying” to people who really don’t want to hear that, and kind of realizing, my experience of whether I’m dying or not is just going to be completely different for someone else, like. Anyway, I’ve stopped talking that way around other people. But, yeah, in terms of like, what’s happened in the city, people losing all their friends, I haven’t actually had that experience. I did briefly work at the Zen hospice, which was a very strong experience in my life. The first day when I went in, there was a dead  body there. Someone had just died like 20 minutes before. But, yeah, I don’t feel like that’s been a big part of what I’ve worked with. It’s been more relating to my own death and other, interacting with other people around that. But I’m sure that will come as well… Is there anything else you wanted to say about that?

(audience member 5)
I just want to thank you because there’s of course this sickness and everyone around me is falling apart and so I’m ?? facing that. ??you talk about your life, your journey.

(Suvarnaprabha)
Did somebody, I don’t know, was it you or was it here..

(audience member 6)
You said something about people talking about fighting and I think it’s an awful phrase, the war on cancer, there’s supposed to be a war on drugs. The vocabulary eliminates other possibilities. We might be considered lazy, or cowards if we don’t fight, when in fact there’s a whole range of possible things. Thank you.

(audience member 7)
Well, I, I had a similar experience to you I think. I was, I’m 63, and I ??sort of converted to HIV about 6  years ago. And I used to be like a counselor for HIV negative guys. He talked about how ?? you know, and they were on one side and I was on the other side. Now all of a sudden, I’m on that side. I switched roles and I told people around me, my close friends, “Gee, I’ve got HIV.” And they said, “Gee, that’s so sad, especially at this time in your life, that you would have gone through your whole adult life, and now you’re, all of a sudden, you’ve got this terrible thing.” But my experience is that since I got HIV, my life has opened up. And I was on a journey, sort of undefined journey, before, and now all of a sudden I have people looking after me, I have doctors who are monitoring my health, I have support groups. In San Francisco, there’s all kinds of, I’m part of a community. And it was something I felt like it was sort of missing before. It’s weird. And today my life has really, and I’m starting to look at things in my emotional life that I never took care of before. And now people are expecting me to take care of them, like how are you feeling? Are you feeling okay? And like I don’t know if anyone ever asked me that before. I was just having to be brave before. I was having to battle on with my, as a healthy person. Now I am entitled to talk about my feelings and make it stick. And I was talking to a friend after I got HIV and he was saying, “Gee, people like you with this disability is so sad that society,” you know, whatever. And I said, “You’re talking about people like me with disabilities?” I said, “Hey, just take me off your list. (laughter) I’m not part of that.”

(Suvarnaprabha)
That doesn’t sound like a good list to be on. (laughter)

(audience member 7)
I’m a lucky person. And I feel like my life has blossomed in many ways since I got HIV. And I feel healthier now than I felt for …

(Suvarnaprabha)
Me, too.
Thank you.
One more?

(audience member 8)
Suvanna, thank you so much. Guys, you, know, this is our landlady. (laughter)

(Suvarnaprabha)
Yeah, goddammit.

(audience member 8)
You may never have prayed for your landlord. (laughter) When we first started talking about setting up this talk, you said you would speak about the preciousness of life, and I just want to thank you. You have done that. You embody an equanimity that is rare and you’re a real privilege to be around. And I’m sure that I speak for everyone when I say we wish you years of robust health. ?? Thank you very much.

(Suvarnaprabha)
Thank you. Thank you all. You are lovely.

(audience member )
Thank you very much, for coming, and we will never let you die ugly. (laughter)

Sunday, April 21, 2013

"This message will self-destruct in five seconds."

Not sure what I was doing with my hands. Waving?
I've been thinking quite a lot about moving to a quiet place with some trees around. It would be expensive. But actually the bigger factor now is all the work it would take to find a place. I'd like to be in a place that's quieter but not too far away, but it might be too late in terms of my energy level to look for it.

I haven't seen my calendar (paper) since before I went to Jikoji last weekend, so I have switched to my phone, based on memory.

Brilliant meditation practice day with Paramananda yesterday. If I choose the right cocktail of lying down, sitting in a chair, and sitting on the floor, I can occasionally be super comfortable sitting on the floor, even when there is some pain. My sacrum is sore and my pelvic bones are not happy.

Anyway it occurred to me that my body is self-destructing. In the old Mission Impossibles, a tape recorder would convey the mission, and then announce its self-destruction and start getting all smokey. It's like that with my body, except the self destruct took around 50 years. What was my mission?

My mom called me yesterday, which for other people is probably not that unusual. But my mom calls me around once a year, which has bummed me out a bit over the last while. Apparently Kathy told her to! Then she thanked me a few times for calling her. It was nice to talk to her. At one point she said more than once how people in her family are long-lived and that she's going to live a long time. There wasn't much I could say to that. When she asked me how I was, I said that my body is full of cancer. She said it was awful to hear that. I said it was awful to tell her, then she moved on to another topic. It kinda helped me realize how she can't deal with the reality of my situation. Her 80th birthday is next month. I'm going to try to get down to see her, probably for the last time. I can't imagine how weird and intense that's going to be.

"The sounds of an MRI" would be an interesting post. Suffice it to say that it's a combination of the sounds of a laundry room, a machine gun, and a buzzer. At the end it was a BA-BA-BA-BA-BA-BA t-t-t-t-t-t BA-BA-BA-BA-BA-BA t-t-t-t-t-t in call and response. It was interesting to listen to (with my head in a vice, though a soft one.)

It's funny how used to it I am now, people doing things to my body, shooting me up with "contrast", asking me about allergies, wheeling me into tubes, prodding private or public parts. As I have said before, keeping still in tubes while being scanned can be quite relaxing. I kept thinking today: How the hell is this thing looking in my brain?

I notice magazine articles often begin with sentences like, "Sam Smith was struggling with stage 3 prostate cancer..." This is a case study and may be interesting. But if one person is cured of cancer, by itself this really doesn't mean anything for anyone else. These kinds of things fill people with hope. A revolutionary new treatment was tried on Jane Johnson and now she is cancer-free! As I have said many times but possibly not on this blog, it's terribly difficult for the dead people to tell you how the experimental treatment worked for them. And I haven't seen any articles that try to show their point of view. It would be too depressing I guess.

I know this is a lot of random points, but I just want to say that I do have cancer symptoms, perhaps little ones. Tonight my chest felt very congested and my voice seemed weird. It  feels weaker, like there is no space in my chest. My sacrum aches for the last several days. I have less energy even than I did when I was on chemo before. Finally bought face masks today. I will make use of them. I (almost) don't cough at all when I have one on. Hoping my bladder infection symptoms don't come back.

I wrote to Dr. Nelson and said I have concerns about Avastin and asked her about her personal experience with it.

My sister Paulette and Paramananda are still here. We had a nice time today by Julie's pool.

Friday, April 19, 2013

Chemo Lite?

This is what my hair looks like
when I don't press it down after
showering. Don't know if you

can tell how fluffy it is!
Misha let me know that the treatment I had in mind wasn't exactly "Chemo Lite" as I had supposed. Avastin, apparently, can have very serious consequences even after you stop taking it. Because it's (ideally) stopping the blood supply to tumors, it messes with your blood.

Looking at the studies is frustrating because much of them I can't understand. One study says all 11 ovarian cancer patients on Bevacizumab (Avastin) had gastrointestinal complications, fistulas, perforations, etc. Four of these patients died of the perforations within one year. I must ask Dr. Nelson what her experience with this is.

Yesterday was "Dutch Day". Viradhamma and I had a great time at the De Young with the Vermeer and the Rembrandts, then later Tong and I went to see the primatologist, Frans de Waal, who studies compassion and other moral behaviors (reconciliation, fairness, empathy, cooperation) in primates. He was funny, and he had great footage. Elephants doing puzzles that can only be solved cooperatively. A capuchin monkey (who gets a cucumber slice at the same time that another monkey gets a grape) throwing the slice back and banging his fist on the ground. A three year old chimp looking thoughtfully through glass at a three year old human (kind of reminded me of the Rembrandt portraits actually.) He also had amazing info. about, of all things, the relationship between sympathetic yawning and empathy in general. It was cool.

I'm in much less pain after taking antibiotics for the bladder infection. I got an email though from Dr. Nelson today saying that the tests did not indicate that I have a bladder infection. Who knows!

Wednesday, April 17, 2013

Feeling Betterish

I feel sorry for all you Americans who did, or should have done, your taxes on April 15! I didn't do mine and it doesn't matter!

PET scan Aug 12, 2012
(lungs)
Paramananda, Padmatara, Julie and I talked to Dr. Nelson today. It was a good conversation. It made me feel positively cheerful. I told her about my fear of chemo. She seemed to totally 'get it'. She said she didn't know if I could fully appreciate how unusual my point of view is.

If I decided not to do treatment, she would refer me to hospice. Even though things seem to be spreading all over the place, the primary concern is still my lungs and my decline will probably revolve around them. There are so many ways things could unfold you can't really know all the scenarios. Bone pain can be dealt with in various ways including radiation.

It's funny thinking about the psychology of it all. For me, the lungs aren't that important anymore, all the other mets seem disasterous. From a medical point of view, the lungs are, at the moment, 'still the main issue'.

PET scan April 13, 2013
So the drugs on the table, at first, were the chemotherapy drug, Topotecan, and the targeted drug, Avastin. The Avastin is pretty straightforward and can be combined with a variety of chemotherapy drugs. The Topotecan would mean I'd have to go to Kaiser every day for five days in a row every three weeks, and  all my hair would fall out. But when the hair loss came up, and I mentioned I'd be sad to lose my curly new 'do, she said we could switch to one of the other drug options, Gemcitabine (jem-SITE-a-been). It doesn't cause hair loss, and it's administered only once a week for two out of three weeks. She said these drugs tend to be much more well tolerated than what I had before (CarboTaxol), and that we'd do a scan of some kind after six weeks (last time we talked, she said after two or three months.) So it all seems very do-able to me now. If it's not so bad, and it seems like it probably won't be, it could buy me a few more months of life.

Renee the social worker told me that people tend to live longer once they're in hospice. If I do the chemo, and I probably will, I won't be in hospice, because I'd still be getting scans and stuff, which isn't in line with the hospice principles. Once I stop, that is what will happen. I need to call the Kaiser hospice one of these days and chat about things. Also, this place, Compassion and Choices, that Trebor's friend told me about.

Fernwood Cemetery
To clarify what I wrote about food last time (that it's not important), I'm not completely ditching the healthy food thing, although I seem to be not eating at home lately (which isn't that healthy!) I still want to eat food that makes me feel good, I just want to balance a bit more eating what I feel like eating with what is 'good for me' to eat. I had a few glasses of red wine the other day which I really enjoyed. Haven't done that in probably a year.

I wonder if once I get ill, I could maybe sublet a ground floor studio apartment in a leafier part of San Francisco, or nearby? This apartment has 31 steps, plus, I think that I would like to be somewhere else, but closeby. I  hope that can be worked out...

Tuesday, April 16, 2013

Inside my thorax

I looked up a lot of the words in the PET/CT scan report, which was probably a mistake. I wasn't even sure what a thorax was, other than a possible Dr. Suess character.

In more recent news, peeing has been painful for the last several days. Spent hours today, again, at Kaiser (mostly because it took me ages to have to pee even though I drank two large bottles of water), for an exam, urine test, and lunch with Tong. The results of the urinalysis were all normal except it contains hemoglobin. An internet search shows an association with cancer in the kidneys. Alas.

Paramananda, Padmatara and I are meeting Dr. Nelson tomorrow at 1:30. I wish I could share with you what Renee and I talked about yesterday - it might be useful if you have cancer or need to talk to doctors for other intense reasons - but there is too much. Jeff and I also checked out Fernwood cemetery, a beautiful, "green cemetery" in Mill Valley. Can't go into that now either!

Here's the part of the report I understood the least:
Imaging through the thorax now showed more than 20 foci of intense labeling, SUV up to 17, several lesions coalesced to form masses up to 4 cm in size. A 3.5 cm mass with SUV 13 indented the right heart border. Hypermetabolic nodes were located in the paratracheal, precarinal and hilar positions.
My translation: The SUV (Standard Uptake Value) indicates areas of brightness on a PET scan, and the brightness indicates intense metabolic activity, AKA cancer. I'm not sure about the significance of the SUV numbers. There are more than 20 very bright spots in my chest, including on the right border of the heart, next to the trachea, in front of where the two main bronchi split, and in the hila, another part of the lungs that seems too complicated to explain here. The largest nodule in the thorax (chest) is 4 cm (less than 2 inches.) The bigger lung nodules seem to be mostly clustered around the centerline.

And there is cancer all over my bones as you can see. The red circles I drew in both pictures indicate areas of involvement - I don't know exactly where most of them are or how big they are, but it's clear that there are a lot of them.

All this is perhaps going too far over to the clinical side. It is just to say: I have a new self image that  includes a lot more cancer.

After writing that whole thing about sugar a few days ago, I'm not so bothered about what I eat anymore. I feel that the time for being careful has passed. (However, what YOU eat is important!)

It is an intense time for me. In a way no different from normal life, but heightened somehow, and my mood changes seem to be all about life and death and my views about them.

In the past I have sometimes seen myself, in groups anyway, as a walking reminder of death. Paramananda pointed out that to the people I know personally, there is a depth and a tenderness there that goes beyond the abstraction. Truly, the tenderness is incredible.

In Buddhism we talk very freely about 'letting go'. And the reason to let go, or to have it as a goal, is that every aspect of our physical experience in this world, what we own and even our body, is borrowed. On some level we know this. Yet letting go of a loved one, including when the person is oneself, is tremendously difficult. Or maybe it's just thinking about it that's hard.

"An Adventure" by Louise Gluck

1.
It came to me one night as I was falling asleep
that I had finished with those amorous adventures
to which I had long been a slave. Finished with love?
my heart murmured. To which I responded that many profound discoveries
awaited us, hoping, at the same time, I would not be asked
to name them. For I could not name them. But the belief that they existed—
surely this counted for something?

2.
The next night brought the same thought,
this time concerning poetry, and in the nights that followed
various other passions and sensations were, in the same way,
set aside forever, and each night my heart
protested its future, like a small child being deprived of a favorite toy.
But these farewells, I said, are the way of things.
And once more I alluded to the vast territory
opening to us with each valediction. And with that phrase I became
a glorious knight riding into the setting sun, and my heart
became the steed underneath me.

3.
I was, you will understand, entering the kingdom of death,
though why this landscape was so conventional
I could not say. Here, too, the days were very long
while the years were very short. The sun sank over the far mountain.
The stars shone, the moon waxed and waned. Soon
faces from the past appeared to me:
my mother and father, my infant sister; they had not, it seemed,
finished what they had to say, though now
I could hear them because my heart was still.

4.
At this point, I attained the precipice
but the trail did not, I saw, descend on the other side;
rather, having flattened out, it continued at this altitude
as far as the eye could see, though gradually
the mountain that supported it completely dissolved
so that I found myself riding steadily through the air—
All around, the dead were cheering me on,
the joy of finding them obliterated
by the task of responding to them—

5.
As we had all been flesh together,
now we were mist.
As we had been before objects with shadows,
now we were substance without form, like evaporated chemicals.
Neigh, neigh, said my heart,
or perhaps nay, nay—it was hard to know.

6.
Here the vision ended. I was in my bed, the morning sun
contentedly rising, the feather comforter
mounded in white drifts over my lower body.
You had been with me—
there was a dent in the second pillowcase.
We had escaped from death—
or was this the view from the precipice?

Sunday, April 14, 2013

Coming home

I cried on the freeway a bit, not much. My situation is much more painful in relation to other people than it is in relation to myself. I had the thought on retreat, Dying Is Like a Thousand [Unwanted] Divorces.

Padmatara made an announcement at the retreat. I wasn't there so don't know exactly what she said, but people were just friendly to me, and no one asked me about the PET scan, which is exactly what I needed. Friendliness and kindness are the best. Really, I was surrounded by cool and loving people. I am so grateful for that.

I hope to talk to Renee the social worker in South SF tomorrow about how to ask questions of my doctors. She told me a year or so ago that she gets the full story from doctors whereas their patients often don't. I thought I didn't believe her, or didn't think it applied to my doctors, but something stuck with me because I remember it vividly now and want her advice at this juncture.

That story I read recently, The Making of a Peaceful Death, in which the dad is given chemotherapy because the doctor wants him to participate in a clinical trial, and the brother wants him to keep up the fighting spirit. It causes him a great deal of suffering, does not prolong his life, and he dies in the hospital completely wrecked and confused by drugs. My fear of natural death pales in comparison to my fear of this kind of death. On the other hand, what if chemotherapy could prolong my life for a year? It seems so unlikely. I need more info.

I have a busy week with Paramananda here, Jeff coming tomorrow, and Paulette coming Friday. These people are among those I love the most, and yet, it feels like too much.

Friday, April 12, 2013

OK, I'm officially dying now.

Not to be melodramatic, I think it's realistic.

Misha's was wonderful this morning. She put a lot of needles in my upper chest, front and back. My lungs opened up, and I stopped coughing. It felt so great. But as soon as I walk out I'm coughing again, though it probably won't be back in full force until tomorrow. I slept for an hour there, and I slept when I got home. I am much more tired lately.

I suspected there were more metastases, but since I am usually wrong at such guesses, I placed no wagers. But I was right. As with the new mets in my lungs, the reality went beyond my imagination.

Dr. Nelson called at around 4:30. We didn't even talk about my lungs. There is a 2 cm. tumor in the left lobe of my liver, and disease in my spine, mid-upper back to the sacrum. There are also 'spots' - not totally certain that they are cancer - in my spleen and next to my adrenal glands. I pasted the report, or most of it,  below.

I told Dr. Nelson I had warmed up a bit to the idea of chemotherapy. I did say of the various options available for chemo, I'd like us to pick the one least associated with neuropathy. She said Topotecan and Avastin are good, which was what she had in mind anyway after talking to Dr. Brooks at UCSF.

She said if I am going to do treatment, it would be good to start in the next week or two. I told her I'd let her know next week.

Next week I will also ask her:

  1. What would a decline look like for someone with my condition?
  2. What can I hope to gain from chemotherapy at this point?

I had to tell Paramananda that I couldn't talk about the phone call until I was done packing and we were in the car. I'm at Jikoji now, it is very beautiful. But trying to figure out how to navigate among 30 people, many of whom will automatically say when they see me, after the American fashion, Hi, how are you? which is really quite terrible for me. (I know that it's just what people say! But I'm pretty sure at our brief check-in, I'm going to ask them not to.)

Some of the report from the PET scan:

FINDINGS:

CT scan was primarily used for attenuation correction and
registration of landmarks, and will not be reported separately
here. If clinically indicated, a diagnostic CT scan should be or
should have been performed within 3 months of the PET-CT scan.


The brain appeared grossly normal. Imaging through the head and
neck showed symmetrical physiologic labeling in the salivary
glands, pharynx and larynx without abnormality. There was no
abnormal uptake in the lymph node groups, including the
supraclavicular and axillary groups.

Imaging through the thorax now showed more than 20 foci of intense
labeling, SUV up to 17, several lesions coalesced to form masses
up to 4 cm in size. A 3.5 cm mass with SUV 13 indented the right
heart border. Hypermetabolic nodes were located in the
paratracheal, precarinal and hilar positions.

A 2 cm lesion in the lateral segment of the left liver lobe had
SUV 10 and a small lesion in the spleen had SUV 6. Heterogeneous
labeling was otherwise noted in the liver and spleen without other
focal abnormality. A 2.5 cm lesion was identified in the right
adrenal with SUV 13, and two smaller foci were noted at the left
adrenal with SUV up to 6.2. A focus superior to the metallic seeds
had SUV 6.3. Other areas of uptake within the abdomen and pelvis
appeared to be related to expected bowel and urine activities.

Many intensely hypermetabolic lesions were now located in the bony
skeleton, on the left side of C3 with SUV 7.5, the T1, T9, L1, L5
vertebrae, multiple sites in the sacrum, the left anterior iliac
bone, the right acetabulum, right pubic ramus and the left ischial
bone.

** IMPRESSION **:

PET-CT study showed wide dissemination of malignancy since PET-CT
scan of 8/16/12, to the lung parenchyma, mediastinum and hilar
regions, the adrenals, liver and spleen and in multiple skeletal
sites.

Thursday, April 11, 2013

Sugar

Note: If you're not in the US, you may not be able to view the videos. But there's some reading at the end.

Jules and I saw Dr. Lustig talk at the library for almost two hours. It was great. (Would have been improved if he had called me up beforehand to help him simplify his slides!) He talked about how sugar used to be special! Now it's a staple food. Americans eat 20 times the amount of sugar we did 100 years ago. (Factoid: there are no sweet foods in nature that are poisonous.)

Here he is on UCTV: Sugar: The Bitter Truth. It's 89 minutes, but you could watch the beginning and just see if it's interesting. Because I have been eating very little to no added sugar for over a year now (especially in the beginning this took some effort [for me]), seeing him was an affirmation.


Here's a shorter one (14 minutes) from 60 Minutes, 2012. Start at around 7:35 to hear about cancer. 


During Q&A at Dr. Lustig's talk, I asked about sugar and tumor growth. He mentioned the 60 Minutes episode, above, and this UCLA study that studied pancreatic tumor response to fructose. It says:

“Traditionally, glucose and fructose have been considered as interchangeable... and little attention has been given to sugars other than glucose,” the study states. “However, fructose intake has increased dramatically in recent decades and cellular uptake of glucose and fructose uses distinct transporters ... these findings show that cancer cells can readily metabolize fructose to increase proliferation. They have major significance for cancer patients, given dietary refined fructose consumption.” 
As in anti-smoking campaigns, a federal effort should be launched to reduce refined fructose intake, Heaney said.

BTW, table sugar is half fructose and half glucose. Lustig points out that the problem is not just with fructose, it's all sugars. Large amounts of fructose seem to be particularly pathogenic (causing cell damage, insulin resistance, fatty liver, and more). He noted that just about anything is toxic when highly concentrated and taken in large doses.

Something else by Lustig, something of a summary, an article in the Huffington Post: Still Believe 'A Calorie Is a Calorie'?

From The Guardian, March 2013:

It is not a case of eradicating sugar from the diet, just getting it down to levels that are not toxic...The American Heart Association in 2009 published a statement, of which Lustig was a co-author, saying Americans consumed 22 teaspoons of it a day. That needs to come down to six for women and nine for men.

From Wiki.answers:

How many grams are in a teaspoon of sugar? 
Answer: One teaspoon of granulated white sugar is equal to about 4.2 grams. There are approximately 4-8 grams of sugar in a teaspoon of sugar, depending on its granularity.  
It is important to note that a teaspoon (tsp.) is a unit of volume, whereas a gram is a unit of weight.  
Example: If you are buying a bottle of cola with 44 grams of sugar, you would divide 44 by 4.2 which is equal to about 10 teaspoons of sugar. 


I'm getting a PET/CT scan today. 

Wednesday, April 10, 2013

More from the dusty frontlines

Behind furniture,
yesterday
Note that "vacu um cle aner" and "air pur ifier" can't be written normally here, or else they turn into links to online stores. Very annoying.

Hridayashri found the HEPA filter in the vac uum cleaner, which I cleaned and put back in. Then I took the vaccum apart a bit to clear it out,and tried to rid my bedroom of the layer of dust I created by vacuuming the super dusty 'picture rail' (I think it's called) yesterday. The HEPA filter is tiny. Does it really do anything?

Someone gave me an air pu rifier which has been blowing dust all over my room for the last few days. So I need a new filter for that, but the amazing thing is that Shantinayaka gave me just a regular dust mask, you know, for construction workers or whatever. I wore it the whole time I was in the clutches of vacuuming madness. Along with my Laney College goggles of yesteryear, it helped a great deal with the coughing. I coughed maybe once or twice total, less than I have coughed in some time. Though breathing your own breath isn't the best part of that, but you get used to it.

Some friends have suggested that I should ask (or pay) other people do these (ideally) dust-defying tasks, which makes sense when I am not using a mask. But with the mask, there is no reason for me not to do it. If my main job these days is staying alive, this is helping me do that, and I have the energy for it.

A new look
Robin left me some lentil-potato-kale soup yesterday. Yay! Lately, I am very motivated to do certain things, and amazingly unmotivated to do others, for the last week or so, such as cooking or food shopping. Also my PayPal balance got to '0' and a few days later someone gave me $250 which is very handy.

I picked up some juices yesterday from my new favorite place. It's $6.50 for 16 oz. of juice, which isn't bad considering it's organic, not pasteurized, and made daily. I'm not exactly doing a cleanse, in that I had a huge slice of pizza (artichoke hearts and mushrooms) for lunch, with a Roots 1* chaser. It was the best lunch ever.

* Roots 1 juice: beet, carrot, kale, spinach, romaine, parsley, cucumber, celery.

Monday, April 8, 2013

Thoughts on chemotherapy

What the back of my head looks like
these days. Wavy gravy. 
It's safe to say that the recent news of new lung nodules sent me into something of a tailspin on the theme of dying, which is very different from the apparently easier-to-take theme of death.

I talked to Jules yesterday about chemotherapy. She pointed out that some, if not most, of the 'miracle stories' about overcoming the odds with cancer were about people who had done chemotherapy. Her relative who lived for 30 years with an 18 month prognosis was on and off chemotherapy the whole time, with periods of remission or stabilization. Somehow I did not know this, about her relative or others. What about the guy in New Orleans in the Voodoo museum. He had also lived 30 or so years with a brain tumor. Had he done chemotherapy? I assumed not.

BTW Elisabeth Kubler-Ross advises doctors not to tell their patients how long they are expected to live. Come to think of it, my doctors have never volunteered life expectancy numbers. They gave them reluctantly and only when pressed (by me.)

My fears or reluctance about chemotherapy are many. One has been that it will decrease my life quality, possibly permanently (for example, if the neuropathy gets worse), and do nothing to prolong my life. And Dr. N. herself has said many times that she had no idea what would work, and that she would understand if I didn't want to do it. Ending up in the cliche cancer bed, dying, wrecked by chemotherapy. I'm very aware these days of various kinds of medical interventions that don't help, that do not consider quality of life, that cause suffering. Part of it, too, is just the feeling I get when I think about periodically injecting super toxic chemicals directly into my bloodstream.

Rock and roll art created when I was 16, 
encountered while on an anti-dust rampage.
While it's also true that the other things I'm doing are probably slowing the rate of growth, chemotherapy seems the only hope for actually shrinking the nodules and prolonging my life. I remember what Dr. Block told me, that the  disease was at a stage where any kind of treatment would need to include chemotherapy.

Perhaps I will agree to do it for three months. Perhaps I will ask Dr. N. about choosing the drug that has the lowest instance of neuropathy. First let's see what the PET scan this week shows.

She said there was no clear data as to whether starting it earlier gives better results. The only thing I know now is that I want to start before I need an oxygen tank.

Saturday, April 6, 2013

"Vanishing Lung Syndrome" by Miroslav Holub

Once in a while somebody fights for breath.
He stops, getting in everyone’s way.
The crowd flows around, muttering
about the flow of crowds,
but he just fights for breath.

Inside there may be growing
a sea monster within a sea monster,
a black, talking bird,
a raven Nevermore that
can’t find a bust of Athena
to perch on and so just grows
like a bullous emphysema with cyst development,
fibrous masses and lung hypertension.

Inside there may be growing
a huge muteness of fairy tales,
the wood-block baby that gobbles up everything,
father, mother, flock of sheep,
dead-end road among fields,
screeching wagon and horse,
I’ve eaten them all and now I’ll eat you,
while scintigraphy shows
a disappearance of perfusion, and angiography
shows remnants of arterial branches
without the capillary phase.

Inside there may be growing
an abandoned room,
bare walls, pale squares where pictures hung,
a disconnected phone,
feathers settling on the floor
the encyclopaedists have moved out and
Dostoevsky never found the place,

lost in the landscape
where only surgeons
write poems.



Hoaxes and Gumption

Spring in San Francisco
There's a hoax email about cancer attributed to Johns Hopkins going around. It's a mix of ideas from science and alternative medicine. Overall, it's mostly sensible advice. For example, it says not to eat meat/animal products, and to eat lots of vegetables. Don't eat things with added sugar or aspartame. It also says that radiation and chemotherapy scars and damages healthy tissues and organs. Some of it is obviously not based on science, like how not eating meat "allows the body's killer cells to destroy the cancer cells." (If that's all it took, that would be very cool.)

But the detailed 'science-based' debunking of it is also not completely factual, or anyway does not accurately describe my experience. It says that chemotherapy and radiation do not cause permanent damage, which is just a lie! The neuropathy (nerve damage in my feet, though it is not painful) caused by chemotherapy endures. Radiation gave me arthritis in my hips. Don't get me wrong, radiation is the main reason I am alive right now, but still, it is false to say that the effects are temporary.

What the rebuttal says about the immune system fits with my experience. Alt. medicine types seem to focus on cancer and the immune system. My immune system is fab and as long as you don't xray my lungs, I appear to be healthy as an horse, if indeed horses are healthy. The danger of any point of view, 'scientific' or not, is thinking that if you do one thing, it will cure you, whether it be juice fasting or aggressive chemotherapy. If I had longer to live and more motivation, I'd meld what I consider to be the correct parts of both articles, from the point of view of someone with advanced stage cancer, who fairly successfully relies on both conventional and complimentary medicine.

I found this cool juice place up on 24th, the Pressed Juicery. Made daily, unpasteurized. They do supplies for 'cleanses' which is just 8 bottles of different kinds of juice. Don't know if I would do a juice fast but might step up the veg juice for a few days.

The last few days I've had the house to myself and have mostly stayed in bed, although yesterday I had a long wander around the neighborhood. I was planning to go on solitary today, but don't really have the energy, or perhaps it is the gumption - a word I'm sure I've never used before - to gather up and transport the terribly many things I need to bring with me, get gas, and drive for 3 hours. I may still go. But not now.

Dr. Lustig from UCSF is speaking at the library on Tuesday about the effects of sugar and processed food on health, which I would like to see.


Sounds and Visuals Section

With Julie and Lisa S, watched Sleepwalk With Me, an autobiographical movie about Mike Birbiglia's early days of comedy, and sleepwalking. It was edgy, I thought, in an interesting way. All of us liked it.

Found a short book Questions and Answers about Death and Dying by Elisabeth Kubler-Ross in Noe Valley yesterday. It's interesting, but unfortunately it's almost all focused on caregivers. I seem to have skipped 3 out of 5 stages of grief (bargaining, depression, anger, denial, acceptance) for the dying. I mostly stick to acceptance, with occasional bouts of denial. 

Thursday, April 4, 2013

24 hours later

Needle face
As you can imagine, it is not easy (or sensible)
to take these photos with needles in my wrists!
I don't have to be a model cancer patient. Sometimes death is there like a kitten purring on my lap, and it is fine. At other times, it's very sad. That's the way it is, nothing stays the same. I have let go of my life many times. Many times I have picked it up again; then just a momentary thought that it will be taken away, and streams are running down my face.

Being fine can be being fine, or it can be a fence, or a mask. Or a fencing mask! Seriously though, I need a paradigm shift. I am fine perhaps too often. Or not that, as much as the rather deep feeling that I want to be fine, or I want to appear to be fine, that is problematic, habitual. Falling apart has got to become OK too. The word cataclysm springs to mind.

Today for the first time at Misha's, she asked me how I am, and my eyes filled with tears. She was really sweet. She suggested Levine's womb meditation, perhaps recording myself, then playing it back. Also books by Elizabeth Kulber-Ross about the stages of grief for the dying. I felt very calm after the acupuncture.

Need to finish all the damn paperwork, that will be a great relief. Perhaps I do have some imagination about a world that doesn't include me.

There is no point in worrying about chemotherapy. I've done it twice. I very deeply do not want to do it again, to take a gentler path, but that decision is for later.

I had some very sweet conversations today. Danamaya came over and we talked about giving help and receiving help, and how hard the latter is sometimes, and how being self sufficient...leaves something major out of experience. And about dying, what it might be like to die in this flat that I've lived in for 19 years.

I can't imagine dying. I don't know what it will be like. I don't know what it's like to be cared for in that way, or indeed how that might happen. I haven't needed, or acknowledged that I needed, much help, possibly since I was somewhere between 5 and 10 years old. I've never even stayed overnight in a hospital.

My cough seems to be getting more frequent. For example, I used to never cough when I was lying down. Now I do. There could be other reasons for this but at this point I'm going to assume that cancer is at least part of it. Though I'm still getting some amount of exercise, I am tired, every day.

Some time in the relatively near future, I will get very sick over a period of time, I will perhaps be quite helpless at some point, and I will die.

Who knew?



Wednesday, April 3, 2013

Was that good news or bad?

January 15 xray
Crap, I got all attached to my life again. Which isn't to say that they found a tumor the size of a watermelon or anything like that... just that based on the somewhat fuzzy xray, the nodules seem to have gotten a little bigger. But the part that kills me (yes) is that there seem to be new ones.

Because she'd heard I had talked to the social worker, and my GP, and the nurse, about a cough, I am much healthier than Dr. Nelson expected. She also expected the nodules to have grown more than they had. She said that, by looking so healthy, etc., I made her day! And yet the same info. seriously unmade mine. Just goes to show, it all depends on what you were expecting. I was expecting for the nodules to have stayed the same, or to have grown slightly. I was right about that (maybe, the CT scan will show for sure), but it never occurred to me that there would be new ones. A few hours after we left her office, it hit me like a ton of bricks. Enter Death, again, stage right.

Did I really think I was going to be cured, or healed? Well. People tell me it happens all the time. I seem like a reasonable candidate. But damnit, why didn't I remember that almost all the time, that's not the way it ends? That's why odds are odds. Really it's like saying, Hey, You'll win the lottery, happens all the time!

At first she was concerned about my weight loss. Well, I eat healthy food and exercise, and I wasn't doing that as much before, so why not? She said sometimes patients lose their appetite, but sometimes they eat a normal amount and lose weight anyway, 'cuz their bodies can't seem to do anything with the food. Maybe cancer is why I've lost weight. Why I'm tired. Why I cough. Why my mouth is dry and my teeth are changing. Or not. No one knows. I'm not sure why, but today seems much more than before like waiting to die.

April Fools Day xray. Note the new nodule
on the lower left, outer side. There was another new one,
don't remember where it was. New ones not
easy to see in the photo. 
She did talk to Dr. Brooks at UCSF, who suggested roughly the same drugs as Dr. Block. Especially one called Avastin which was just approved by the FDA for cervical cancer. It's a 'targeted agent', something about it cutting off the blood supply to tumors ("Anti-VEG-F") used in addition to a more regular chemo drug.

In the studies, I think it was people with ovarian cancer who took Avastin lived 3 months longer than those without. Which we thought didn't sound all that great! She explained, that 3 months is the mean for the group. So some lived longer than that, some less. Tenuous grasp of statistics here. She guessed chemo had a 15-30% chance of working, meaning that the cancer decreases in size by a certain percentage AKA 'there is response'. Come to think of it, I don't know if this was an example or a guess for me in particular. Alas.

Do I want to do chemotherapy? If only I could find out exactly why my tumors are growing slowly and do more of that. Do I want to do chemotherapy but only up to the point where the botheration (love this word, possibly coined by Danamaya) ceases to be worth it, then stop? She said most, if not all, of her patients want to be on chemotherapy all the time, that my wanting to just relax, etc., and not get any treatment makes me "one of a kind." Really? More comfortable on chemotherapy? Who are these people? Anyway. I don't know what to do (other than go buy a mint IT'S-IT from the corner store.)

She gave me a bunch of printouts from cancercare.org. I said I'd read about the various chemos and after the scan, think about what I want to do.

Wednesday I will pick up Paramananda from the airport. Thursday I will get a PET/CT scan. Friday at 4pm, I will find out the results on the phone, then go to Paramananda's retreat.

I'm glad I didn't think to ask how long she'd guess I have to live. I'm not going to ask that anymore. No one knows.

Even Dr. Nelson says cancer is a roller coaster, for everyone.