Impact of Blueberries & Theater

Very tired today. Have been lying on my bed watching movies for hours. Now I am eating excellent blueberries which are from...Chile. That's part of what's wrong with things, I think, that someone in San Francisco in January can eat a big thing of organic blueberries for $4.99, flown all the way from Chile. According to a random website, that is almost 6,000 miles from here. Also, the eight different kinds of coconut water at Walgreens. Where are the coconuts from? Is there now a mountain of cracked coconuts on a beach somewhere? How far do they, or the cans, travel?

It's interesting: what one thinks one is owed, or deserves, or maybe just what one is unwilling to give up, given a choice. You might say, well, she has stage IV cancer, why not have a few Chilean blueberries? I don't mean to belabor the point, but I feel that the sense of entitlement - or perhaps it's just an inner sense of lack - that millions of us have, is what is heating up the earth, which will some day make it uninhabitable. (Not to oversimplify, or to claim all the responsibility!)

My life is fricking easy, and compared to the kind of hardships that are available in life, it always has been. Sure, I may be dying of cancer, but even if so, that's been pretty easy so far.

photos in this post were intercepted off of now forgotten (by
me anyway) internet sites. Almost all the rest of the photos were
taken by me or friends. I try to indicate when not. 

When I am at the acupuncturist, I visualize white light filling my body. My lower abdomen often feels dark. A couple of nights ago I had a dream about watching a show in an old, cavernous theater, trying to get out quietly before it was over, which was tricky. There as a pitch black room at the bottom of a huge staircase, so you had to turn on the light at the top of the stairs, before descending.

This morning we had our weekly chapter meeting, the Tender Hearts - Karunadevi, Dayamudra, and Viveka. It was good. A chapter is a group of people who have been ordained who meet regularly as a support to spiritual friendship and practice.

My friend in London ordered this poem written for me at 'The Poetry Takeaway' (an instant poetry stand) at the  Festival for the Living. She says

I told a rather nice young man a very little bit about you and your cancer, and an hour later went back and he read this poem aloud. Given that he had 2 others to do before mine I think it's pretty good...In fact I even felt quite emotional when he read it. Not a masterpiece, but good enough to send you, and I really thought you should have it. Interestingly, I didn't mention that you were musical (or indeed that you wrote some pretty good poems yourself).

Four Words 

Cancer of the vagina
Four words that could deflate even the most
inspired of erections
Four words I want to whisper in the ear of a rapist
Four words I want printed in white block capitals
on a skin tight vest
Four words to shout from a mountain made
entirely from cancerous breasts
This is the opposite of testicular cancer
Cancer - the word that rhymes with dancer
I've got music coming from my vagina
Dance with me

Sisters & Perspectives

Montana, summer 2010, left to right:
Kathy (Singapore), Paulette (Laguna Beach), Laura (Fresno)

Had a nice conversation over skype with my three sisters - well, two of them - last night. Laura, who is the closest geographically, kept getting dropped (and there is no video.) I'm going to try to sort that out for next time, maybe switch to Google+.

Cull and Po are both into exploring life, exploring experience with honesty and humor. Both have been involved in Codependents Anonymous for a couple of years.

At some point Kathy asked me if my vagina is going to be like Auschwitz. It was very funny. I was thinking...In what sense? Not open to visitors? Or you can check in...but you can't check out? I forgot to ask.

In any case, from my subjective experience, what I have felt is an ache in the center of my my lower abdomen, which for a while anyway felt like it was radiating out to my left hip joint, and occasionally down to my left knee and my right side too. The pain, which was usually mild unless I was sitting on a hard chair, does seem much better now. Went to Samovar in Yerba Buena the other day with Nancy and didn't even notice that I was sitting on a wooden chair!

We talked a bit about working with thoughts, positive affirmations. I had had an interesting experience noticing thoughts that day (an area I am very interested in in general). I noticed that when I felt bad, I would think about how bad I feel, and it would make it seem worse. Then later I noticed that when I feel good, I think that...and there is something about how I was thinking of it that is not...helpful. Kathy I think suggested that maybe it was because how I was thinking about it was a barrier to the direct experience, and I think this is true. There most certainly is way to evaluate that is both necessary and useful. But then there is something that has, from my Buddhist perspective, a feeling of...stickiness. Which is as subtle as the difference between "This is how it is right now." and "This is how it is."

Nieces Paris and Lily, Montana 2010.

Laura is going to be at my house for a couple of weeks on Feb 3, and Po will come the weekend of Feb 9. Cull and her daughter Paris will be here from Singapore for their spring break at the end of March.

In general, I am doing very well so far - this week after chemo I felt better than I did last week after chemo - that was a shocker. I attribute my wellness to lots of 'complimentary medicine'. Which mostly means acupuncture twice a week (day before and after chemo), very healthy food, walking every day, naps, not having to work, no sugar or caffeine, quarts of hydrating coconut water, and later today, a massage that Tong got me. Yay! It can also change quickly, and nausea/motion sickness/gut wrenching never feel too far away...

A Nun Flies Through the Chemotherapy Room +

What Sally Field was up to in 1968 

Yesterday: First, radiation, and a chat with my main oncologist, who is lovely, Milan Patel, with Karunadevi and Julie. He said the treatment is going well, which as far as I can tell, means that nothing has going wrong! (There are no diagnostic tests during this treatment phase.)

In response to gut turmoil he suggested increasing fiber, and avoiding eating raw fruits and veg. He also said there's a possibility I will become lactose intolerant during treatment. Karunadevi suggested probiotics, and he agreed that was a good idea. (It's funny how my doctors never seem to volunteer this kind of info first!) He said again that the radiation will at some point stop the bleeding and will help the pain in my sit bones.

I also asked for my brother in law Jon how much daily radiation I am getting. The answer is 4400 centigrays.

During chemo Julie and I watched the first episode of The Flying Nun, which will only register with Americans over a certain age. It's about a nun (Sally Field about 2 years old) in San Juan, Puerto Rico, who because of her wing-ish headgear and very small frame, flies. And Ricardo Montelban and a nun who reminds me of my friend Kitty.

We also watched the documentary Crazy, Sexy Cancer. I liked it - interesting to watch someone else's journey. Made me realize too how people think - and a month ago I thought - that cancer is all kind of the same deal. But this lady had 14 tumors on her liver and lungs that, eventually (spoiler alert as they say) were just sitting there not doing anything. Which is as close as she can get to being cured - nothing to do but check on it once a year.

Individual cancers, just like people, can have totally different personalities! Grow at drastically different rates, respond to different treatments. Even what doctors look for, what is a good sign, what is a bad sign, what is a perplexing sign. It seems to depend on on what body part/s and what kind of cell within that body part. For example, an oncologist said he was not concerned with how big my tumor is. How deeply it has penetrated into the tissue is what is significant. I'm not sure what mine's personality is. We'll have to see how it responds to what Dr Keith Block called the 'attack phase' of treatment.

With Tong (who works at Kaiser) in the chemo room

Speaking of cancers being different, as you might imagine, vaginal cancer CANNOT be called sexy. It's just not possible. Not that I've ever seen it what it looks like (that would be trippy), and I've had virtually no vaginal pain...but still, sexy? My movie would be called The Crazy Antichrist of Sexy.  Presumably the title works for the woman who made the film, who is a successful actress in NYC, and ends up getting married. My sex is what has cancer, so that's very different, it probably goes without saying. Anyway.

Apparently coconut water is a thing now. Prasadachitta said they sell it at yoga studios. They had *5* different kinds (one of them had sugar in it though) at my favorite store, Duc Loi. I LOVE IT. I attribute the fact that I had chemo yesterday and did not feel sick (just tired) afterwards to the 3 huge cans of coconut water I drank...plus got a foot massage. YUM.

Dhammagita had suggested it or some version of it (Vita Coco). She also sent me a link to this excellent sounding show on the South Bank in London, "Festival for the Living, " which is pretty much about death. There is an interesting podcast.

The rest of my numerous appointments will be in Lotsa Helping Hands soon.

Various

"If you are divided from your body, you are divided from the body of the world, which then appears to be other than you, or separate from you, rather than the living continuum in which you belong." Phillip Shepherd (quoted by Eve Ensler, I think)

Near Lake Tahoe

Last night I saw Misha. First we talked for a bit. She mentioned working with the FDA and doing trials of herbal lotions - something to do with HPV and cancer. She put in the needles, I don't know, maybe 20 mostly in my head, lower abdomen, and a couple in my feet or lower legs.  She said she was working on 'stabilization' and releasing dead cells from the body.

And I lie there for some indeterminate amount of time which does not seem long. Then someone comes in and stimulates certain points with a burning cigarette (not really, but it's a burning ember and it smells good). It feels fantastic. It's called moxa. Anyway when I was lying there I was thinking, this is the only time I do not feel sick, the only time I feel very deeply well. In fact the only time I can feel energy moving through my body, and at the same time I feel deeply calm, is when I am there. It's the only time I can fully relax. I feel a lot of confidence in my western doctors, but I feel that what they are covering is a narrow band of my life. Going to Misha fills in everything else.

A couple of friends have suggested I get a second opinion about my treatment. A Buddhist here who is a doctor has put me in touch with a specialist at UCSF, Dr Rebecca Brooks. I have felt on the edge of not quite being proactive enough to go this far, to add to all the appointments I have. But I am doing it. Today I got all my paperwork in to get records forwarded. They will call me for an appointment when they get the records. 

I filled out an Advance Healthcare Directive yesterday with Dawn and a talkative bald cancer patient as witnesses. You know, don't keep me alive as a vegetable, etc.; when I'm dead I want everyone to get drunk and sing Spirit in the Sky, etc.

More later about chemotherapy yesterday. 

Life/A Giraffe is Very Large

Tanzania, 2006

I thought I knew how big a giraffe is, until I stood next to one in a forest. My head did not reach to the top of his leg. You could stand underneath his stomach, I mean, if you felt like it,  but you probably wouldn't feel like it. I'm 5'9". It's like looking up at a big furry house...that walks.

Then the giraffe isn't there anymore, because five years have passed, and that was in another country. But still: we are small. We are a dot.  We can barely stand up beside the stature of anything, even our own body, which is in some way, king of it all.

Today and yesterday, my guts are in painful turmoil and I am very tired. Has it really only been 4 days of treatment?

Rochelle left me a can of fancy Bi-rite tuna which cheers me up. As did a walk in Edgewood Park with Julie.

How Can Cancer At Least Occasionally Seem Like Such a Positive Thing?

Banksy

I wrote a while back about sitting in meditation, tuning into the tenderness in my heart. I am acutely aware of this now, not only of my own tenderness, but of being surrounded by it. Like my need to defend or protect myself has somehow broken down.

A few people have told me that it was upsetting to read that I am thinking about being ready to die. It is understandable. Being ready to die is also an extremely positive thing...because being prepared for death is essentially the same as being ready to live. You can't only be ready for one thing, they are too much inside of each other.

My life has become more unified. I realize how often in the past I have felt subtle guilt about what I am doing (or not doing), or subtle anxiety (often about money, about the future.) I have spent so much time planning, planning tomorrow, planning next year. Now, I can't think about anything more than two weeks away. Really: nothing. I do not think about the future. It is too clear that there is nothing I can know about it right now.

I do not feel that I am practicing, or trying to do, anything, but that certain things have dropped away or simplified in ways I could not have anticipated. I feel less psychologically complex. I feel that what I've been practicing (or something) has flowered...into a caring and connected feeling for friends and strangers around me. For example, on the street I spend ages petting a dog, or chatting with an at least slightly crazed homeless person. The world, the life that the world is filled with, seems magic. I don't think I have ever known so deeply that I am loved.

If my life returns....well could my life ever return to what it was? Doubtful. But if someday I am able to expend some energy in other ways, through somehow to the other side of cancer, I hope some part of these threads, which have made my life so sweet, will carry on.

Another Day

Montana, 2009

Day 3 of radiation today, then PT & I drove in the rain to the San Mateo DMV. I got a temporary handicapped placard, and registered my car, which I am getting tomorrow.  My sister Laura and her husband are driving it over from Fresno and taking the train back.

Had a wonderful acupuncture treatment last night. Beforehand my lower gut felt like it was tied in a knot and I was having little waves of something like motion sickness from standing up.

Because the chemo I am getting is primarily a 'radio enhancer', meaning its main purpose is the enhance the effects of the radiation, I am getting a lower dosage than someone would who is just getting chemo. Thanks to that. The real trouble isn't supposed to start for another 10 days or so.

The other times I've gotten acupuncture there I felt the needles very intensely. This time, all I felt was a slight pain in my lower abdomen. She said she was going to work on the nausea, and circulating the chemotherapy drug. It felt like that's what it was doing! I felt into a deep, completely absorbed and restful sleep during the first part of the treatment. I am so grateful that I am able to do this.

I'll post back-of-the-head pictures as soon as I remember to get some! Saying that I wouldn't have gotten the haircut if I didn't have cancer might have implied I don't like it. I love it! AND I'm a dyke magnet now which I might as well enjoy (even though I'm a celibate heterosexual with a very messed up vagina!!) (It must be said.)

Got two lovely long & sweet emails today. Some people have asked if it's ok to email...It's ok to do whatever you want, and I pretty much enjoy it. It's also fine to give this blog address to anyone who would like to see it - I just don't want it publicly posted anywhere.

...some old friends just took me out to a nice dinner at Foreign Cinema - lovely in spite of starting to get rained on a bit toward the end. Lovely food, lovely company! And the wooden seats didn't hurt for some reason...but I might have to start carrying around a cushion.

If you're on the lotasahelpinghands website, I added some stuff to it...

Did I Have to Get Cancer to Get This Haircut? Yes.

A Few More Things

Eclipse, San Francisco

A few more things about today.

No more nausea after I rested for a couple of hours. I'm still going to be taking 2 diff anti things for 3 days, so we'll see.

I feel fine so don't need any help yet...or not any more than I'm already getting! If you might want to eventually help in any way it would be very useful for you to sign up on lotsahelpinghands (people offer via posted comments or phone calls or in person or emails but I can't keep track...) I did post some information about the food I am eating on the Food tab.

Tong saw a flyer for a gynecological cancer support group: at Geary 1st and 3rd Tuesdays. I would like to go to this some time if possible. I'd love to find one closer to my house but that is not likely to happen.

The sweet radiation oncologist Milan Patel told me today that the radiation would very likely stop the bleeding and decrease the pain in my sit bones.

Appointment tomorrow @ 2pm at Honeycomb for the ever elusive haircut. Was pondering a Michelle Williams 'do. Don't know if I can face a pixie.

I'm very glad the treatment has started. Let's get this shit done!

The Movies I Picked Were Crap (Subtitle: Chemotherapy)

Photo by Padmatara

Room not really as divey as it appears here.


Super nice nurse called David who somehow was not impressed by my movie selection. Sadly, we weren't either. 2nd Harold and Kumar movie is dreadful. Portlandia was kind of, but not very, funny. 


New hair appointment I hope, tomorrow. All seems to be staying in place for the moment. My chemo doc Tavakoli (I think this name is Persian) is out for a month - no one knows why. My new medical oncologist is Amy Lin who I will meet on Wed Feb 1, 1:30. Tomorrow after radiation Padmatara and I are going to talk to a social worker at Kaiser about various things. 

Bedside table (at home)

I felt nothing unusual when I was getting it (injected into my hand). It took about 3 hours - 1 hour of hydration (water with sodium and magnesium), 1 hour of cisplatin, and 1 hour of hydration. I also felt nothing during radiation this morning. In bed now, feel slightly nauseated whenever I get up - have meds for that. It's the main side effect. 

Ay, nap time. x

Lying on Tables & Other Gifts

My step mom Chris giving me her car!

I've laid or possibly lain on two tables today. One at the acupuncturist's, and one for a radiation simulation, which involved being jacked up to around shoulder height, and watching all these crazy mechanical arms and other gizmos circling around my pelvis for around 20 minutes. The simulation is all about imaging. Julie and Padmatara were in the waiting room.

I tried to get a short haircut today, but the stylist had called in sick. The other one I tried was on vacation. Will try again at Grasshopper in South Park, 3pm Thursday. If that doesn't work, screw it - I'll just wait for it to fall out!

I signed some papers that the saintly Dhivajri filled out for me - about State Disability, and getting a Handicapped parking placard (no, you can't borrow it!) Still need to get my car registered, get an area parking permit, and sort out some other parking for the next while. Also I'm almost done changing the beneficiaries on my IRA which has taken a while because I need people's social security numbers. Am also doing an Advance Health Care Directive. So much paperwork! Also trying to de-clutter my living space a bit. I was told yet again today that side effects won't kick in for about 2 weeks. I hope it's true so I can get some more stuff done. 

A fabulous pair of socks...but will they
match my hospital gown?

It's impossible how many appointments I now have. Here is a current list of appointments. (I only included the ones to the end of January as some of the rest will probably change.) 

Summary: Tomorrow is radiation 7:45am, chemo 9:15am. After that, radiation 9:15am Monday to Friday for a while. Radiation is daily in South San Francisco, the chemo is Geary/ Divisadero once a week. 

What else happened today? Had a few short phone conversations between appointments, etc. Got knackered again just from talking to people and lying on tables. Rented two DVDs for chemo tomorrow, both super highbrow: Harold and Kumar Escape from Guantanamo Bay, and Portlandia.

Felt very loving toward the people on the BART train again, especially the man with the very strong accent of some kind who asked me which train platform goes to Embarcadero (but pronounced it in a way I could barely understand), and then which train. He was with his son. I felt very protective of them.

I have received many gifts. I have received many gifts today! People have given me money which is such an enormous relief, not to mention books, a car, loving emails, cans of sustainably farmed tuna, groovy socks, company, nutritional solidarity, books, rides, good vibes, and salads at Fresh Choice. And there is the gift that I maybe understand a tiny bit more about the Buddha's teachings on impermanence...

Here are my upcoming appointments. 

A Note From Pasadini About Helping

Friendly donkey in Valderrobres, Spain, 2009

If you would like to help me when I am unable to take care of myself, and/or find out what help I need, please click here to register with lotsahelpinghands.com and request to join the online community.

More about helping on the 'Help Needed' tab.

Here is some info from Pasadini about the website:

I have set up a fancy dancy on line coordination website in order to help folks plug into how to help Suvarnaprabha out over the next few months with rides, food, etc. 

Once you go to this site you are invited to fill out the right-hand side of the form which is a Request to Join the Community. After you've done this, you get approved, then you will be sent instructions for setting a password and signing-in. Then you are good to go.  Once you sign up for a task the website will send you reminders automatically which is extremely thoughtful/useful.

I will be adding stuff as needs come up so you will notice that if you sign up now that there is only one open activity as of yet.  But please check back as once SP gets her schedule for chemo, etc. then I will add dates for rides.  She will have a car you can use (manual transmission) if you don't have your own!

Thanks much and if you need help with this don't hesitate to shoot me an email.  

Kindly, 

Pasadini.

Whale Beach

An attempt at auto-photography, Lake Tahoe

Wonderful walk today, again from the east side of Lake Tahoe in Nevada, down a wide path of towering and gnarly western redcedars. We (Julie, Dawn, and Mike) landed in a beautiful little cove called Whale Beach. There was no one else there.

We stayed for an hour or two. Toward the end of the afternoon the wind started picking up and the waves were crashing and spraying in the sun...I'll post some photos on Facebook.

My sit bones seem to ache a little more every day. Pillows are my friends. Walking is one of my favorite things to do...it doesn't seem to effect the pain either way.

It was not a long walk, but it is a high elevation (6,000 or 7,000 feet I think), and it was a a lot of sun, and a lot of cold wind. We were all completely knackered when we got back.

We had an excellent dinner and everybody pretty much went to bed. Time for me to do that too. Sorry for the abject lack of philosophical content. I'm feeling depressed at the moment about how my life might be for the next...however long. But I don't want to write about that so much.

A Walk at Spooner Lake

Mike and Dawn

It is lovely to be up here in Tahoe. Went for a 2.1 mile hike with Mike and Dawn around Spooner Lake. In the bright sun the aspens near the shore were particularly beautiful.

We saw a bald eagle, at first at a distance, flying close to the surface of the water. Eventually it flew right by us, amazing to see.

Last night I felt some pain in my pelvic bone, and hip joints. I'm wondering whether my days of not having any pain are over! It might be from driving here (sitting in the car for hours), and in fact the last time I felt it was up in Lake County, also after a long drive. Also I haven't worked out the challenge either of how to sit in meditation.

I was realizing today that it's probably more painful because of what I think: It's not just a sensation, it's the thought of cancer. I'm pretty sure this thought makes the pain seem worse. So this is my next (mental) project, to try not to add to the physical pain with my mind.

The doctors say that once treatment starts, it will help with the pain...

Optimism or Pessimism?

Here is some of what I've been reading, written by the oncologist Keith Block who has worked with many, many people with cancer:

"Bombarded with doom-and-gloom statistics, you may feel overwhelmed trying to muster enthusiasm for life. So forget all the talk of 'survival rates.' They do not apply to you. All statistics, by definition, apply only to groups, not individuals. Researchers use them to determine whether a therapy works or not, and physicians use them to help make choices among different therapies. But as an empowered individual, you should not use statistics to dictate your chances of survival." (p 5) 

I don't really have any statistics to deal with...yet I find this very sensible and encouraging...it doesn't mean that you know you're going to live, it doesn't mean that you know you're going to die - it means you don't know what will happen. And how incredibly difficult it is, to deeply not know, to be neither optimistic nor pessimistic, when there is no objective cause for either. What you do know is that you cannot control the outcome, and that what you do will have some influence. Anything can happen.

A Different Diagnosis

Here is my diagnosis from Misha Cohen's office, written up by the other acupuncturist, Elisa Angelone.

Yin
 and 
Blood
(Xue) 
deficiency 
with 
lack 
of 
Qi
in 
Upper 
Jiao, 
Kidney
 and 
Spleen
 Deficiency, 
Heart 
Fire,
 Toxic 
Heat, 
Chong 
Mai 
Imbalance


Doesn't sound too bad does it? Well, sounds better than Stage IV cancer I would say. Anyway the treatment plan is 5 pages, and they want to see me 2x/week during chemo. There are a lot of nutritional recommendations which I want to follow...I will try to find a way to summarize them.

Radiation 101

Radiotherapy Machines...

Padmatara, Julie, Pasadini, Dawn and I went to a "Radiation 101" class today at Kaiser in South San Francisco. We saw the unbelievably sophisticated and huge machine made by a local company called Varian which delivers radiation.

Then there was a slide show with several different people talking about their areas, including a Medical Dosimetrist, a behind the scenes guy who "designs a treatment plan by means of computer and/or manual computation to determine a treatment field technique that will deliver the prescribed radiation dose while taking into consideration the dose-limiting structures." [via healthpronet.org].

A nutritionist spoke for a bit. Looked at the booklet "Eating Hints: Before, During and After Cancer Treatment." Some of it was to do with managing side effects of treatment, but...for example, I can't believe they tell people losing their appetite to drink fruit punch! I'm much more confident getting nutritional advice from the acupuncturist, who says to eat omega 3's, all organic food, very different...

A social worker told us some interesting stuff - I will give her a call at some point to find out about classes for people with cancer & support groups. Would also like to go to the "Look Good....Feel Better" class offered there by the American Cancer Society. They tell you how to draw eyebrows and other cosmetic stuff. It had only vaguely occurred to me that I won't have any eyebrows, which almost seems worse than losing the hair on my head...It was nice to be there with friends. It did possibly make it less scary.

"Sugar Feeds Cancer"

Quote from Dr Keith Block:

Tumors are gluttons for glucose. They consume this blood sugar at a rate of ten to fifty times higher than normal tissues. 

This reminded me that a couple of months ago, I went to Community Acupuncture Works (a lovely place and very affordable). I remember telling Ninah that I was having *intense* sugar craving. She asked if I had had this before. I said I didn't think I had - to this degree.

So this is maybe related to 'sugar feeds cancer'. I would add, Feeding a sugar craving feeds the sugar craving. Of course this is probably true of any kind of craving. If you indulge, it may come back stronger. I have virtually no desire to eat anything with added sugar now, and less craving for fruit. Not because I know the sugar is bad for me, but because after I stopped eating it for a day or two, I lost interest. I'm really grateful for this actually, that it's not a struggle.

Alkaline Drink & an MRI

Walking out of the hospital where I got the MRI today, saw a veg juice stand and one of the juices was called "Alkaline". It was $8 for a small one - made of various greens, ginger, celery, lemon...I can't remember what else - and I sprung for it. It tastes disgusting, but not nearly as bad as some of the Chinese medicine I had for a while.

When I checked in at the hospital they told me that the bill was $1,000. This happened once before, where they said I owe them money, and it turned out that I didn't. Hopefully that will happen again this time.*

Rather than a donut (CT scan), the MRI is a tube, and while inside it I immediately understood why they ask beforehand if you're claustrophobic. And there are a lot of rapid banging sounds in varying pitches. (They gave me earplugs.) After around half an hour they took me out, shot me up with some dye of some kind, then put me back in for about 15 minutes. It was kind of hot inside that machine, was wearing too many layers, but I felt very relaxed by the end. Then I got slightly lost trying to get out of there, a bright red EXIT sign gracing every corridor. Even tried to take the stairs but I could see that after the down stairs, they just went right back up again. A kind man told me how to get out of there...and eventually, ah, outside.

*Note from Tong: Member Services confirmed you have zero co pays. Please don't waste your time if they say you have a co pay. I'll take it up with Member Services until they are sick of me. The technical name (not kidding) for the plan is a Cadillac plan...The $1,000 is the cost Kaiser charges to Fee-for-Service users...You didn't owe them a dime and it is stress which makes patients worse. I'm sorry about that.

Nonbenefits of Cancer

Here are two things that, at the moment, don't appear to be benefits of having cancer. As you can see they're both about other people!

1. When someone seems to think that they know why you got cancer - it's definitely because of something you did. They're sure it's the type of food you tended to eat, or some poisonous thoughts you had. Which isn't to say that these things couldn't have been a factor. (I am resisting the temptation to show that for me they were not.) But there are also other possibilities - genetic, environmental - and no doubt others we know not of. My working theory is that imbalances in my body caused by perimenopause - depletion, depression, losing a lot of blood - were a factor. At the end of the day, I have no idea why I got cancer. Five oncologists don't know why I got cancer. Does it have to be my fault?

2. People who want to help you so they tell you (or write books that say) that you can cure your own advanced stage cancer - by drinking vegetable juices, eating tumeric, singing, being vegan, or drinking diluted hydrogen peroxide. (I'm exaggerating, but not much.) Alternatively, that you should forgo chemotherapy etc, which is what will really kill you. Certain foods are bad for cancer patients. Those same foods, claims someone else, are good for cancer patients. It has been confusing. However I have mostly chosen my path: Chinese medicine according to Misha Cohen, diet and other lifestyle recommendations from oncologist Keith Block (plus leaning toward foods that are more alkaline), and Kaiser for chemotherapy and radiation.

So these are the things that are difficult....also, it can be very painful for me when friends etc. are upset and crying. The fact is that I feel very strongly that I have to be prepared to die...In a way this is what keeps me from being depressed every day. However, I don't mean to suggest that that is some kind of precognition, or that other outcomes are not possible. Think of the Sting song, If You Love Someone, Set Them Free. But the someone is your life.

For balance, see my other post, Benefits of Cancer.

Shaman

Alan Waugh

My friend Alan* is a shaman. On his website he describes what he does as "a practice of entering non ordinary states of reality to engage with the spirit helpers and the natural world to develop relationships, solve problems, perform healings and enhance balance." Alan has also been a volunteer at SF Zen Hospice for almost 20 years.

Please do not take what I write here too literally.

First we chatted in his living room. I did mention that the lingo around cancer is 'fighting for your life'. I said I did not want to fight for my life, that the cancer is part of my body and I do not want to fight my body. That I am working on finding out what the opposite of that is. He agreed very much with this.

Then we went into his healing room (I don't know what he calls it.) First thing he did was ask me to say to the shrine my intention for healing. I didn't find this so easy at first. I did realize that on some level, I do not expect to live that long. I said something like that I wanted to heal and to be able to appreciate all aspects of my life.

Then I was lying on a cot, and he did a little chanting and...again, hard to describe. I had all sorts of images going through my head, but they were so quick I can't remember them. My lower abdomen started to hurt, and my left hip was throbbing. The pain was mild, it was more like intense awareness of those areas, down to my toes. At some point he led me through a visualization, using the breath to go into the center of the pain and filling it with love and light. I spontaneously imagined a fire, and the smoke rising from it. It was wonderful. The sensations changed into something spacious and blissful.

Afterwards he said the ceremony lasted about 2 hours, which I found astonishing. He said part of the purpose of this disease is for me to show people how to handle death. He also said there was kind of a blockage in my throat, that I need to be very vocal in expressing my needs during this time. I wasn't quite sure what that meant but perhaps that will emerge later. He said he communicated with an owl, and that there are protectors or guardians around me.

We talked about death and I was telling him how impressed I am by him having found his vocation, and his commitment to helping people heal. By the end of the session we were both crying. He said he would be there for me on my journey. It was incredibly comforting.

Here's his website: http://www.alanwaugh.com.

*Note for Buddhists: Alan was around in the early days of the Sf Buddhist Center. We became mitras together in around 1994 - he has since taken another path.

At the acupuncturist...

Thanks for All Your Kindnesses

From Afghanistan

My dad (in Southern California) sent me a big check - yay! My step mom is giving me her car and paying for parking, and her daughters are covering the insurance. These things are such a huge relief to me. And many other kindnesses have come my way. I feel so grateful that people care about me and want me to live. You might think, of course they do...but...one feels gratitude.

I was saying to Julie yesterday as we were walking in Edgewood Park....is it true that I am happier than I was before I knew I had cancer? How can that be? I suppose there is more happiness (and more sadness and terror as well.)

I wanted to post a picture she took of me from the back...I'm wearing a Grateful Dead sweatshirt around my waist, crouching over with a docent to look at a plant, and it says DEAD across my butt. Julie is too sensible to give it to me...but we laughed about it for a long time.

Meditation

I meditated twice in the Buddhist Center this morning. First time I've been in there in about a month, which probably has not happened since I moved into the building in 1994. I don't think I have meditated formally - maybe once - for a couple of weeks which has also got to be some kind of record for me. I was nervous about making an appearance and being overwhelmed. There were only around 6 people there, and it was in silence (thanks Pasadini!) so it was fantastic.

First started setting up my cushions and remembered that I can't sit on cushions. I got a chair - enjoyed meditation but it started to hurt my joints toward the end. Second sit was lying on the floor. I feel intuitively that the mildly painful sensations i can get in my left knee, and my right hip - are cancer that is not detectable yet. They feel the same way my left hip does, only subtler. It was very interesting kind of figuring out how to relate to this during meditation. Not only the pain but the fear about the pain, and just letting it be. I deeply love this process.

Chinese Medicine

Wow, for the last, say 4 days, I do not feel tired! Last night I went to sleep at around 10, and woke up naturally at about 6:30. Must be because of changing my diet? Also probably getting off the depletion/caffeine merry go round. In any case, it is fantastic. It's also good because I need energy to clean up some things my life a bit before I start chemotherapy.

Misha Cohen

Yesterday I felt so energetic (relatively speaking) that I walked downtown (about a mile and a half). Had a strange experience on Market street (around 9th St.) At one point I looked around, and everyone seemed really friendly and happy. Sure, it was a nice, sunny day, about 60 degrees. But it was the first time I can ever recollect feeling this way, that I was surrounded by random people who were very kind. I should have blinked my eyes to see if they were still there when I opened them again...

I went down there to visit Winnie (acupuncturist I started seeing before I knew my diagnosis) who lent me some books about cancer, and then have my initial consultation with Misha Cohen. She is well known for working with tough cases such as myself (cancer/chemotherapy, Hep C, AIDS) for many years. I was there for 2 or 3 hours. It was wonderful. It feels deeply nourishing/healing to me in a way that going to Kaiser does not. I also have a lot of respect for Chinese medicine and in the past it has been helpful, especially on things that Western doctors can't help with. I have been interested in some forms of Asian massage (Shiatsu and Thai) that are based on Chinese medicine...

photo by Nancy

We talked for about an hour - the two of us and an apprentice or intern or whatever*, and Nancy. She was very kind, and she knows a lot about chemotherapy and radiation, even about my specific chemo drug. Then I had a treatment, which was intense. It's hard to explain. I felt a lot of intense energy moving around in my body; somehow it is also extremely meditative. She asked me about some kind of blockage in my chest that she felt in my pulse. I said yes, I have worked with kind of blocked heart energy quite a lot. She put a needle in a point near my lower shin bone, which was rather painful, but I felt it very strongly in my left hip (where there is cancer)...

Her advice was: to meditate (which i haven't been doing, mostly because of extremely low energy and painful sit bones.) Re nutrition (I've decided I'm going primarily follow Misha's advice) She suggested I get Life Over Cancer [links to a blog] re nutrition which I ordered last night.

She suggested fish (according to recommendations on seafoodwatch.org), whey protein, organic eggs. I think she said chicken causes...some kind of congestion. (She's going to give me a written treatment plan which includes all the recommendations, which will be very helpful.) Also on the alkaline/endless sprouts front, she said Chinese medicine recommends at least lightly cooking all foods, though sanitation might have been a big influence (it's true - seems like very few cultures [outside california!] eat raw vegetables.) But I often cook the sprouts too. I don't feel like I can eat tons of raw food but I certainly like having some, carrots and turnips etc.

Some vitamin recommendations: B complex, calcium at night, 4k Vit D, superdophilus. Suggests miso, sauerkraut, kim chi, almonds and walnuts, ginger; suggests focusing on developing soups, can also heat up veg juices and make soup out of them. Congy is good too.

I'm seeing her again Tuesday, January 10 at 2:30 - will add this to my list of appointment page below.

The other woman is an acupuncturist called Elisa.

Doc Appointments

LOCATIONS
Daily radiation is in South San Francisco (Oyster Point exit off of 101.)
Weekly chemotherapy is at 2238 Geary/Divis, 8th floor. Blood work is same location, 2 days prior.
Weekly radiation (brachytherapy) is in Santa Clara.
Acupuncture is on Mission between 5th and 6th.

All the doctors, contact names and numbers are listed under the Resources tab.


SCHEDULE
Wed, Jan 18, 7:45am - first radiation + meeting with Dr. Patel

Wed, Jan 18, 9:15am-2pm - first chemo, bring snacks, book, laptop, DVDs, etc.

Thu, Jan 19, 5:45pm - post-chemo acupuncture

Monday to Friday, January 19-26, 9:15am - radiation + Dr. Patel Wednesdays
Mon, Jan 23 - blood work for chemo
Tue, Jan 24 - acupuncture TBA
Wed, Jan 25, 11:15am - chemo (Dr. Tavakoli)

Thu, Jan 26 - acupuncture TBA
[Fri, Jan 27, 4:45am - meet w Dr. Tavakoli NOT]

Monday to Friday, January 27-31, 11:30am - radiation + Dr. Patel Wednesdays
Wed, Feb 1, 1:30 - Amy Lin (medical oncologist)

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Po visiting Feb 9-12. 
Brachytherapy in Santa Clara:
[blood test Feb 1ish]
Wed Feb 8 at 1:30 pm - TRT 1 . Please arrive here by 12:45 pm. Do not have anything to eat after 5:30 am. You may have clear liquids up until 9:30 am.
Tue Feb 14 at 8:30 am - TRT 2. Please arrive by 7:45 am. Nothing to eat or drink after midnight.
Tue Feb 28 at 8:30 am - TRT 3. Please arrive by 7:45 am. Nothing to eat or drink after midnight.

CT Scan with Tattoos + Treatment Finally Scheduled

I had 2 CT scans yesterday. A CT scanner is essentially a temperamental donut that has a camera whirling around inside of it, and you get very, very carefully placed on a table and wheeled into the center, as if you were the jam. To help you visualize I have included a picture of a turtle called Lucy who for some reason needed a CT scan. I hope Lucy has fewer troubles than I.

Writing about the details of the procedure here would be rather too intimate even for me. Suffice it to say that I have 3 dot-tattoos now. Getting a tattoo, even a tiny little dot tattoo, was way more painful than I thought it would be. They are on either hip and below my belly button, to help with navigation of radiation beams. The RN today who helped with the radiation was so incredibly thoughtful and gentle, Jeanie Wong, I *loved* her. I'm sorry I won't be getting any more CT scans, at least not for a while. I also got a lot of info about side effects of radiation.

It's finally sinking in that I'm going to lose my hair... I will get it cut short before chemo starts.
I ordered some stuff today recommended by nurses and docs - special soap, shampoo and other things.

The treatment starts January 17 with my first dose of radiation. Next morning chemo starts.

There is a free 'Radiation 101' class/tour they offer at South San Francisco a couple of days a month. I'm going to go on Thursday (Jan 12, 12:30-2pm) if you would like to join me. If you don't want to, that would be a very sane choice, but if you would like to you are welcome.

Benefits of Cancer

Mural on Balmy Alley

"life has a way of humbling you down"*

One wouldn't want to be ridiculously optimistic, and I am not. However I have noticed a few things since my diagnosis.

My life now is deeply and intuitively precious to me.
At the same time, I think I will be able to let it go when I need to.
I am able to live much more wholly in the present.
I experience my life, and other people's lives, as precious.
There is a lot more love being expressed by everyone in my life (including me).
I feel very connected to people.
I told a friend in an email, who asked me if I felt supported, that I felt surrounded by love.
My family has been generous with money, without which I could not take care of myself properly.
In a way, everything has become really simple. There's just taking care of stuff, and love.
Physically, I don't feel so bad other than feeling depleted/tired, which I have been for many months (if not years.)

I write these things not because I'm trying to be positive, but because this has been my experience, so far. It hasn't been very long - about a month.

* from 'life has a way' by anthony hamilton. this song is not particularly appropriate for this post. but i heard when on NPR yesterday i felt i must quote it and was unable to wait 'til the appropriate time...

More About Chemo

After meeting the chemotherapy doctor yesterday I thought of more questions (as happens so often) and wrote to Dr Patel who I will see today to start prepping for external radiation...here's how it went (my questions are at the bottom.)  

Hello. 

We had our tumor board meeting and Dr. Tavakoli and I were in attendance

The cisplatin is a chemotherapy agent used as both a systemic agent to treat the body as well as a radiosensitizer to help the radiation do its thing

When we give radiation - we always use the dose of cisplatin that is safe to give with radiation b/c full dose chemotherapy with radiation is too toxic (regardless of the stage of cancer) - so this has always been the plan

After chemo-radiation is complete - we let you recover for a few weeks and then reassess the situation (with exam and imaging) - and then based on that - Dr. Tavakoli can make recommendations on the role of more chemotherapy

Regarding the bones - we are treating the bones with radiation - so that will give us some mileage and should take away your pain AND the the bisphosphanate is the correct drug to treat patients when cancer has gotten to the bones - it can strengthen the bones that are involved and potentially prevent new spots from forming

Regarding the herbs - sounds fine to me (thanks for the info) - I would ask to just avoid any herbs or vitamins with high doses/content of anti oxidants such as Vit E and Vit C (a once a day vitamin is okay)

We can talk about all of this more in person and we can also set you up with our dietician to review the herbs if you would like

Take Care

Milan

----- Message -----
From: CULLEN,LISA D
Sent: 1/5/12 12:39 AM
To: MILAN DILIP PATEL MD
Subject: one more thing

Hi Dr Patel. I have a couple of questions I thought I would give you advance notice on (even though maybe I don't need to.)

- Dr Tavakoli told me I'll be getting cisplatinum which is a radio enhancer. Didn't you tell us we were changing from a radio enhancer to something that was going to help with distant disease? Why did this change?
- How is the bone issue (pelvic bone and left hip joint) being addressed? Dr Tavakoli mentioned Bisphosphonate but it didn't seem definite...
- is it expected that i will need to do radiation and/or chemotherapy more than once?

ok that's it at the moment! thanks.

p.s. When i was there last time the MA or someone asked me what herbs I was taking from my acupuncturist. I imagine you don't care about this that much but in case you do here they are: 

Base formula: Tangkuai root, Ligusticum root, White Peony root,
Rehmannia root, Condonopsis root, Atractylodis Macrocephalae rhizome,
Poria, Licorice root.

Added: Scute, Coptis (anitviral/bacterial), Coix, Atractylodes root
(dry damp), Gleditsia Spine, Vaccaria Seed (targets toxic heat).

Medical Oncologist/Chemo - Jan 4, 2012

Didn't get any more bad news today, or none that I'm going to tell you - ha ha!

Dr. Tavakoli did say today that my condition is so rare that there is no good data for treatment, survival rates, or...anything. As my sister Kathy said yesterday, I've always been special! I like to think of myself as the albino tiger of the oncology dept at Kaiser.

Karunadevi and Julie came with me today. I will be getting Cisplatinum, a 'radio sensitizer'. Meaning that its primary function is to enhance the effectiveness of the radiation. I forgot to ask how long it takes to administer (could be anywhere between 1 & 8 hours.)

He is not concerned about herbs or acupuncture - just advised caution in making sure there is nothing in the herbs that causes blood thinning.

A couple of things about chemotherapy side effects (will copy this to treatment section too)

• Staying hydrated is most important - not just with water, which can strain kidneys. Need electrolytes. Need to find way to do this without sugar. Found this recipe on http://lowcarbdiets.about.com: Just mix together: 1 cup (8 oz) water (not carbonated), 2 Tablespoons lemon juice, small pinch of salt, flavoring and sweetener to taste.
• Need to keep a thermometer on hand. If temperature is > 100.4 for 2 hours, OR if 101 even once, need to go to emergency room.
• My hair will fall out after a couple of weeks. I will cut it very short before I start. 

2nd Radiation Oncologist - Jan 3, 2012

Today Julie and I drove to Santa Clara for an appointment with Dr Subir Nag, who according to his bio is "one of the world pioneers in brachytherapy and intraoperative radiation therapy."

I have consistently felt that I am getting excellent care at Kaiser - but from a subjective point of view this meeting was pretty depressing. I thought I was done with...discoveries about my condition, but apparently not. I have one more meeting tomorrow with the chemo guy...see what happens there.

In any case. Today. The point today was to find out about internal radiation which is going to be part of my treatment, in addition to external radiation and chemotherapy. I had been told that internal radiation is very simple. Turns out there are two kinds, and I'm not getting the simple kind. I'm getting the kind that is injected with needles, that you need spinal anesthesia for. Why? Because my tumor is big, it is deep. (If I knew how to draw a picture on my mac i would recreate the picture the doctor drew.) Because there is cancer not only in the pelvic bone near the tumor, but in my left hip joint (which must be why I got  on my bike yesterday, went OUCH, and got off. It hurt my bones.)

I've asked the oncologists about my chances of being alive in 5 years. They say it depends on how the tumor shrinks, which they cannot predict. Aside from issues of survival, for me, there are major issues to do with quality of life. In other words, what level of functionality my body will have at the end of all these toxic blasts? The doctor told me that there is a 'reasonable likelihood' that removal of the tumor will leave a hole, called a fistula, in the wall of the vagina, the bladder, or both. The nurse practitioner, Lee, said that radiation impairs the ability of healthy tissue to repair itself. At that point, surgery is risky, can cause more problems than it solves. So you have to wait many months to let the healthy tissue return to closer to normal and then see what is possible.

This is what happens after every exam and meeting with an oncologist - this was my 4th besides all the tests and scans - they give me what appears to be super depressing news. I think, Are you fricking kidding me? It sounds like a total nightmare, again. Then, strangely, I get used to whatever they said. As Shantideva says, If you can solve your problem, then why worry? If you cannot solve it, then why worry? That is pretty much my philosophy. To practice this philosophy, I have to live in the present, because I can't know what the future holds.


Here is a nice blog post a friend told me about that I enjoyed:
Cancer Broke All My Pencils