"A complete response to treatment"

I had another gyn exam with Dr. Littel today. I think my last exam was in June, when he said there was some scar tissue (and the exam was painful for me.) This time, the exam was not painful, and he said there is no scar tissue, and I have had "a complete response" to treatment. In other words, there is no residual cancer. Because of this, it is unlikely to recur there.

So now there's just my lungs.

I'm going to drive up to Seattle with Tong Friday, and fly back Thursday.

A Note From Dr. Nelson

"I think it would be great for you to get away and have some nice vacations. You have chosen some interesting sites. Based on seeing you once and the status of your cancer, I think the trips sound very feasable and that you should go ahead and book the trips.

If for medical reasons you are unable to go/fly, we can write a letter for you (as well as any companion) that will typically allow you to get your money back for the flights. Hotels, cruises and other arrangements, though, are harder and might justify purchasing some travel insurance.

Have fun planning...

- Amy Nelson

P.S. Again, I am sorry you had to be present for the excitement associated with the treatment reaction. Just FYI: The gentleman is doing very well - left the ER after a few hours and called on Monday stating he felt fine."

Pills and potions

I love my new bedspread

My life is so strange. Is everyone's life strange? Is there anyone who can say, with any degree of sincerity, Yes, my life is perfectly normal. Perhaps there are plenty of people who can say that, it's only that I've fallen in with the wrong crowd in the right city. Of course I've been abnormal for so long, normal looks rather suffocating. But I might be mincing things. Not sure if I'm talking about cancer anymore...

Anyway, here's a thing: when I am alone, every once in a while I realize I am checking in with my scalp. I found myself tonight, suddenly rubbing my hand around on my head, thinking, it definitely feels 'downier'. I am exploring the shape of my head. And my head likes it.

Anise and Monterey Pines
(Buena Vista park)

So many pills and potions today, when I'm not actually taking anything it's on my mind still to some degree. Glutamine powder (for neuropathy) mixed with water 3x/day, 10 or so herb pills taken not with food 3x/day, dex and zofran in the morning, and zofran in the evening. The last two have to be taken with food or they will give you a stomach ache, which also happens if I forget to take them. Then the more standard: D3, calcium, fish oil, B Complex. Senna for constipation caused by deximethasone for at least four days, plus whatever sleep aid I am taking that night. Ginger tea for fatigue and digestion. Green tea. I'm also dosing out on probiotics, ideally half an hour before eating, which makes me feel a lot better, less weird. No added sugar except a little stevia, no processed food, alcohol, caffeine (except green tea)...

Sometimes the only word I can think of to describe how I feel is 'weird'. Am I too spaced out to come up with something more articulate? Or perhaps there just isn't a reference point...

According to Pacilitaxol.com, here's what Taxol, the main chemotherapy drug I'm taking, does: "In the cell division cycle, it works in the G2 (Gap 2) phase, by stabilizing microtubules and inhibiting their disassembly." Whoever wrote that was perhaps out of touch with the common man.

...There's also moxa, the burning mugwort (not to be confused with Hogwarts) stick I apply to various points, yoga ball exercises, dealing with the tightness in my hips and the hunchedness of my shoulders, keeping my feet warm, walking at least an hour a day. Support groups, medical appointment juggling, acupuncture, pilates, feldenkrais, the yoga I'm not doing. There's also keeping track of all the pills and supplies, keeping them stocked. And things to wear on my head: wigs, wig caps, scarves, scarf-tying techniques...

Anyway. My pill and potion regimen is most intensive the first couple of days after chemo. I am both tired and not-tired at the same time. Lethargy married to mania. Lethargy/fatigue mostly stays on the inside, mania comes out. The routine changes after 4 days, 10 days, and 15 days. I have it all written up on a complicated spreadsheet. I wish I could upload it here but don't think blogger has that functionality.

I try to remember write down symptoms as they come, so I can have something to report to the doctor in two and a half weeks.

A log in Buena Vista Park

I smoked some pot last night. I noticed I felt kind of guilty about it, but it helps me sleep, though it also makes me feel even weirder. It makes me feel like I am occupying two worlds: the stoned world I occupied when I was a teenager, within the shell of my current 49 year world, coping in different ways with having cancer each moment of my life.

Chemo IV with a dramatic interlude

How my hands would look 
if Laura didn't exist.
Photo by dawn pavli.

Chemo today with Padmatara. We didn't bring the whole house of food, movies, electronics and books. We were proud. And unlike what you might expect, I was kind of looking forward to it, or at least not dreading it. Because I am now more than halfway done with chemo. Two more infusions, six more weeks 'til the last one - Oct 5.

David was in good form. During
Chemo 5, he'll be cycling in Tuscany, but then he'll be back for my last one. PT and I were marveling at how he gets up at 5:00am on workdays to go to the gym. Could we ever do something like that? PT said it's supposed to take three months to establish a habit...I got inspired and signed up for a 7 day free trial at his very gay gym on Market street!

Flyer in bathroom at Grub

There wasn't a private room available, so we ended up in the group room (there are three chairs in it) with just one other person who was asleep. At some point she left and Griz and his wife came in. They were probably in their 60's (70's? - I don't know). He was a big guy, tall, and referred to himself as "an old hippy." He was the friendliest other patient I've come across, at first, but then I think his Benadryl kicked in and he didn't talk much. And, we were watching a movie (Son of the Bride, Argentina, it was pretty good).

David takes his time putting the needle in my hand. He wraps a heating pad around my forearm for around 10 minutes. He touches the vein and follows it with his finger a few times (not sure what he's doing there!), taps the vein, he's very slow and methodical which I REALLY APPRECIATE. Others just stick the needle in. As I may have mentioned, I had a big bruise on my hand for about two weeks after the last chemo.

I mentioned to Griz's nurse how nice everyone in oncology is. She said she had worked in a lot of places and that people in Kaiser oncology seem the happiest and most satisfied with their jobs that she had met.

A lot going on behind this curtain

After PT went down to the cafe to get us an egg salad sandwich, Griz slumped over in his chair and, according to the alarmed nurse who then yelled "Help!",  stopped breathing. He had no pulse.

Suddenly four more people appeared, including David and Dr. Nelson. Apologies to those of you who haven't seen the show Nurse Jackie. I feel that I refer to it frequently. It is my main experience, if I may call it that, of hospitals. The main difference this time was how calm the folks on the show are in an emergency. Of course their context is an emergency room. But Dr. Nelson seemed super stressed out. They don't see this kind of thing very often in the infusion center.

I looked outside the door and his wife was standing there looking completely freaked out and sad. Our welled up eyes met for a few long moments, then someone led her out of the room.

They closed the curtain between Griz and I so all I could see was the feet of the people closest to the curtain. But there were a lot of different voices over there, paramedics showed up, then the fire department. Before that though Dr. Nelson said several times, He's not breathing, we need to get him on the floor [for CPR]. He's not breathing, we need to get him on the floor. At that point, there were only two somewhat diminutive women there, and he was a huge guy (172 kilos [380 lbs] as someone mentioned later), so there was no way they could move him. Then they couldn't find the epinephrine! (Apparently there had been a drill the week before and someone hadn't put it back.) Then they couldn't find the mask that went with the oxygen bag. I'm sure Kaiser's lawyers would be very unhappy that I am writing this. They did find the stuff very quickly!

Fried egg flower

Once everything was found and the burly guys showed up, they gave him the epinephrine and he started breathing again. All these different voices kept saying,  "What's his name?" Griz's nurse: "Griz". Then: "Mr. Griz, you're OK, do you know where you are?" Griz's nurse: "Miller, his last name is Miller." "Mr. Miller, Can you hear me?" He was still very groggy from Benadryl.

It was all over in about 20 minutes and the room was empty. Four different people (Dr. Nelson, Dr. Lui, David, and someone else I can't remember) came up to me at various times, after the main crisis was over, and asked if I was OK. I was alone on the other side of the curtain with tears welling up in my eyes. I felt calm, but there was an enormous amount of stress I was listening to, and Griz being pretty much dead for a while and the nurses searching for the things they needed to help him was kind of upsetting. And apparently they wouldn't let PT back in (there was no room for another person anyway.) Someone then went out there and told her what happened and let her back in.

Post-chemo
acupuncture hand

*            *             *
Acupuncture was great. Misha's been putting a lot of needles in my feet, which sends all this energy pulsing through my feet, and I went into a very deep sleep.

*            *             *

Dr. Nelson didn't write me back yet about travel. I was going to buy my ticket to Mexico anyway on Friday but I guess I'll wait 'til Monday. The retreat in Mexico starts 3 1/2 weeks after I finish chemo...

How my hands look 
because of Laura. 
Photo by Dawn Pavli.

Answer to my last question

When I wear makeup and a wig, people are shocked at how healthy-looking and energetic I am.

When I don't, not so much.

Got an eyebrow tutorial from Dhivajri and Dawn today. But I'm not sure I want to fill in the eyebrows anymore. It makes people think I feel better than I do. Oh, and I found out that "Steam Punk" is a thing. I do not have my finger on the pulse of contemporary culture, apparently. It's not even pointing to the pulse.

I need something to put between paragraphs, something like three asterisks, but classier, when I'm going to change topic in the next paragraph. Or the next sentence. Sometimes when I'm not finished editing I post anyway, because I want to get the info out there. I feel like I have no time lately, I know why!

For example, I don't think I explained the diff. between a PET and CAT scan very well. Suffice it to say, one means domesticated animals in general, and the other is a specific kind.

Chemo tomorrow. Then I'll be done in *6 weeks*.

I suddenly thought I'd like to go to Mexico for the retreat that starts November 1. I wrote to Dr. Nelson asking her if that seems reasonable. I finish chemo October 5. Why the hell not? Because chemo could be really horrible later? What if it isn't?

And furthermore, maybe I should go to Sri Lanka with Kathy in December?

Finally, don't watch Troll Hunter, the Norwegian The Blair Witch Project, but with red-eyed trolls. It is not as good as it sounds.

People say I don't seem tired/More detail on scan

I was really tired for most of yesterday (21st), and wrecked today (due to waking up at 3:30am.) People continue to remark about how energetic I seem. Why is this? Could the steroids still be functioning, or is it the chemo...or the makeup?? Last night I asked Po, So I don't seem tired now? She said no. It's strange.

...We asked Dr. Nelson  today about dealing with insomnia, and where it comes from. She said many chemo patients have insomnia, but it is not from the steroids, or from chemotherapy either, because neither of these things are functioning much a couple of weeks after the infusion. The main assumption seems to be that it is stress/thinking, but I'm pretty clear that's not the cause for me. I feel like my body just wakes up for no reason...or for no mental reason. She suggested Benadryl, and I didn't ask her for anything else (like Klonopin or Ambien.) I figure I can alternate between Ativan, marijuana, Benadryl, melatonin, and valerian, (not in that order) and that oughta cover it! And make sure I walk every day. It wasn't lost on me that the last couple of days sleeping was bad, and on those days I didn't do my 4k steps...

I had a nice mellow day yesterday - a great chapter meeting, a Thai massage, and a lovely little dinner that Karunadevi and Singhashri made. A bunch of folks pitched in and bought me a Kindle and a gift certificate from Amazon which I was exploring last night in the wee hours. Oh yeah, and Dayamudra and I saw Woody Allen! He is making a movie about a block away from here (20th and Lexington) and was standing outside chatting with someone. Various folks, not that many, were sort of standing on the various corners trying to get a glimpse without being uncool. A lady said she saw Cate Blanchett the day before.

A cross-section of my lungs, sort of looking  up from 
my feet. The dark dot is the trachea. The little arrow on
the right (left lung) shows a lit up spot, a tumor
(probably). The other spots on this pic are just
regular lung tissue. 

So Paulette and I met with Dr. Nelson today. She was great! In a way, she's not as warm or funny as Dr. Tavakoli, but I felt that the info she gave was more useful, in the sense that I could understand it! She gave me a copy of the PET scan report and showed me images, and we talked for about 45 minutes.

Before meeting Dr. Nelson, I mentioned to the medical assistant who weighs me and takes blood pressure etc., that people expect you to lose a lot of weight, have nausea, etc., when you're on chemotherapy. She said in so many words that this is an outdated view. The main problem used to be nausea, people couldn't eat, but there are now drugs to control nausea. I wondered if this explained why some people seem to be so set against chemotherapy.

Why comparing tumor sizes
on sequential PET scans
is not so reliable. (This tumor will
appear to have grown.)

About the types of scans. The regular CT scan (not the one that goes with the PET scan), shows you the SIZE of things. The PET scan shows glucose uptake/metabolic activity. Regarding size, the PET scans are harder to compare. This is because the next scan may hit a different part of the tumor (see drawing!) In clinical trials for change to be significant it has to be 25% or above.

The reason I got a PET scan instead of a CT was to do with my pelvis more than my lungs. For just my lungs, a diagnostic CT scan would have been better. (The CT scan that goes with the PET scan is a different kind - it's not diagnostic.) The MRI is for detailed look at very specific area, often soft tissue.

The actual scan. I took a couple of photos of the screen. There is one detectable nodule remaining in each lung. She also said she could see what was probably a little section of emphysema toward the bottom of one of my lungs. (I smoked cigarettes for a long time.) The long and short of it is, because the tumors started off so small and because of the nature of the particular scan I got, things aren't as definite as they sounded coming from Dr. Littell. So, the therapy is PROBABLY working.

My mouth felt a lot better today. She looked at it and said there wasn't active thrush...strange, to me my tongue looks coated with yellow weirdness. What else could that be? Anyway I'm taking 'nystatin', a liquid which is 49% sucrose and is so sweet as to be totally disgusting. Anyway she suggested a warm, saltwater rinse 3 or 4 times a day.

Oh yeah, it occurred to me again that there are other potential scenarios besides "I have/don't have cancer." At the end of the chemo, there could still be tumors - ones that aren't growing...

P.S. Blood tests from yesterday: Everything is normal (including some extra ones that Dr. Nelson put in in case they are causing my face numbness) except neutrophils, which is one of the five kinds of white blood cells. Normal range is 2.1-7.7 K/uL (thousand microliters). My neutrophils are 1.8. So I am slightly immuno-compromised.

49 Today

More fun from Shrigley

Food & dex, their point of entry, & docs

The queue at Tartine bakery

Ideally I would have a veg-intensive whole grain vegan diet, perhaps with some sustainably-acquired fish. But I'm not doing that, at least not all the time. I'm also not sweating it. Eliminating very sweet foods is my main food project, and I feel that is very good for me, and the rest of it is good enough.

However in spite of my exercise regime, which I am enjoying and benefitting from, my waist has grown about an inch lately. Too much eating out combined with too much eating no doubt! Well I just had a pot of veg with seaweed and miso. It felt great.

Sleep last night was crap. I couldn't sleep for ages, and then when I did get to sleep I woke up every half an hour or so.

Mt. Davidson, the highest point in the city
(928 ft /282 meters), looks like this when
it's sunny in the Mission

I was at UCSF hospital yesterday visiting a friend of Karunadakini's who is being treated for multiple myeloma. We had a great chat. Among many other things I remember how fondly she spoke of "Dex" (short for dexamethasone, the steroid)...

Since then my whole mouth started hurting, mostly my tongue. I was wondering if I had caught something at the hospital. A friend asked if it could be thrush. After looking it up I feel that it probably is. About.com says:

Oral thrush can occur in people undergoing chemotherapy, especially in those who are prescribed steroids. It is caused by Candida albicans, a fungus that is found naturally in small amounts in the body.

The main dietary guideline is not to eat sugar...hm...going to try some home remedies like raw apple cider vinegar and probiotics. Will call the oncology nurses tomorrow and see what they say.

I sent a thank you to Dr. Littel for the info about my scan Thursday, and he replied:

You're welcome. Best wishes going forward. Dr. Nelson is a very good doctor as well. 

I started off with kind of a bad feeling about Dr. Nelson, after hearing that she didn't want to give me the scan results until meeting me, even though that would mean I had to wait a week for them. But I hope I like her in person, as switching to her would be most simple. Among other things I need to ask if she's cool with the acupuncture & herbs, as I feel that is an important for me.

I've been writing down my symptoms since Day 1 of this chemo cycle, because based on past experience, I don't remember most of what's gone on by the time I'm talking to a doctor.

Tong and I went for a walk up on Mount Davidson (with the big cross on it - you can see the hill but not the cross from Twin Peaks, weather permitting) but it was so muddy and cold we had to abort and go to the hill at the Randall museum. It's nice going about with a local who knows where stuff is. (Tong grew up in San Francisco.)

...So much of how well or badly I think I am doing is really just a comparison to someone else - without even knowing I'm doing it - either to people who aren't sick, or sick people who seem worse off than I am. And yet, my health is always exactly what it is.

I just wish I could sort out my point of view once and for all...

Preliminary scan results

Mt. Davidson, SF

Found lots of emails this morning I hadn't gotten...going to switch it all to gmail. (suvannacullen [at] gmail.com)

Email from the lovely Dr. Littel:

The Pet scan shows that two of the small lung tumors have about the same signal, but the other ones have shrunk to where they are not visible. The two with signal are not any larger. There are no new tumors. Overall, there has been response to chemotherapy.  

Very best to you,
Ramey Littell, MD
Gynecologic Oncology 

I wasn't quite sure what 'with signal' meant...I suppose it's to do with brightness on the scan? So, there are no new detected tumors anywhere, and all the tumors in my lungs but two have disappeared. And the ones left are the same size they were.

Keeping in mind that the scan can only detect things larger than around 1 cm, so anything smaller will not show up on the scan. I forget which scan shows the smaller stuff...is it the MRI? The tumors could all be there still, but too small to detect...so worse case is still that they have only gotten smaller...either way, it's good news...

No scan results yet

Ferry to Tiburon

During Dawn's KM (friendship) ceremony at the Center, I looked over at some folks making offerings and I thought, Why on earth would I ever want to leave this place, these people?

The pilates class was great this morning. We walked to Japan Town - about four blocks - and had lunch at Izumiya, then returned to go to the monthly Kaiser support group, which was fab. Laura liked it. I think I will see if someone wants to come with me next time too.

Lo suggested in the group that I say something about my mom...which come to think of it I don't think I have written about here.  A couple of weeks ago I noticed that I was feeling crabby about her not calling me, which she has not done for many years, if ever. I got in touch with this longing for my mom to reach out to me,  and I was getting more and more annoyed. I have been calling her once a week or so for many years. I didn't so much feel like talking about it in the group, I feel to some degree at peace with it. I need to be aware of this longing, a longing that will probably never be satisfied by interacting with my mother, or expecting her to 'act like a mom' because I have cancer. Many people shared their feelings about their mothers.

The case worker Ann Foley suggested other ways of being nurtured, for example, by being in nature. I was interested in that because I usually think of nature-time in terms of being sick of the city. But perhaps there's more to it than that. I do feel that I have many nurturing activities and people in my life. My sisters have been wonderful.

Zooming away from city fog,
which I actually enjoy and besides,
the rest of the country is smokin' hot

In the support group we also heard that a woman, Helen, had died. She had multiple myeloma, which I hear now and then but am not totally sure what it is...looking it up reveals that it is bone marrow cancer, starting with  platelets.

Helen was born and raised in San Francisco (you meet natives now and then, not that often). She was...graceful. And seemed very healthy at the group last month. I remembered a few things she talked about: her husband told her that he thought her illness was harder for him than for her, and she agreed that was probably true. He had had to carry her from her bed to the car to get to chemo, she was so weak. She said her two teenagers would help her out, bring her oatmeal for example, if she texted them from bed...I was sorry to hear that she had died. I don't remember when she was diagnosed but she seemed to die very quickly.

I put in a plug at the group for the retreat I want to lead some day for people with cancer.

I may not get the results of my scan until Wednesday at my appointment with Dr. Nelson, but I will try to get them earlier. If I like her she will be my new oncologist.

Shaky trailer II

Mechanical horse at the Musee Mechanique
at Fisherman's Wharf which in general is a
terrible tourist trap

Strangely, I found my scan today... relaxing. You have to fast aside from this nasty (well not as bad as Chinese medicinal herbs) barium drink. After you get shot up with radioactive sugar, you sit still, alone in a room for half an hour. Oh yeah, and they check your fasting blood sugar. I think mine was something like 58. The trailer shakes a bit from the wind.

You have to lie completely still - very comfortable - on the scanning table which moves you through the tube three times. The first two times are the CT AKA 'Cat' scan which provides the sort of map to go with the PET scan. The third time through, it spends four minutes on each area as it makes its way down your body.

Other than my shoulders hurting from having my arms above my head for so long, it was amazingly relaxing and meditative. Even though it's in this weird trailer in what seems to be some kind of San Francisco wind corridor. The trailer is behind the Kaiser building at 2200 O'Farrell. They take you out there from reception, where there seems to be a permanent arctic gale. I am sorry for the folks that work in that trailer. Though I'm sure they get paid well...and they only work in SF two days a week, the rest of the time they no doubt get to milder micro-climes.

There was a lady with a cane on the lift with me up to the trailer (apparently people injure themselves on the stairs). She said last time she was fine, but she had gotten really bad neuropathy (numb feet) so she couldn't walk as well. She was sort of on the older side, don't know how old. I thought, geez, I guess my neuropathy isn't that bad...

After a 'Castro Omelette' breakfast at the Squat and Gobble in the Haight, we saw Total Recall at 1000 Van Ness. I enjoyed it, and, it seems, anything post-apocalyptic. Plus Colin Farrell is terribly hunky. I haven't been eating at home, at all, it's probably very bad. In fact...had popcorn at the theater with that super fake butter which probably has that fake fat stuff reputed to give one diarrhea, and it did. (Thankfully we had been early for the movie so I didn't miss anything.) Probably radioactive diarrhea, but that might be TMI?

Tomorrow: pilates, Kaiser cancer support group, and Dawn's KM ceremony at the Center.

I am astonished by my own stamina. In the past if I would do this much I would start to feel like I was on the verge of a breakdown. Even going to a movie...But I feel fine...

A dull post?

(David Shrigley, I think)

I decided a few days ago not to spend the time that Laura's here all on practicalities.

So yesterday we took the ferry to Tiburon and had lunch at Sam's. Today we did so many things I can barely remember them. The main one was seeing War Horse at the Curran. It was fantastic. It quelled my theater jones.

I'm going to see if I can switch doctors. As much as I love Dr. Tavakoli, I'd rather have a more reliable presence.

I'm drinking fake banana-flavored barium in the morning, and bringing the other bottle with me to the CT/PET scan appointment at 1:15.

Laura went with me today to Feldenkrais, it was fab.

I applied for a scholarship to go to this 'personal writing' retreat put on by The Sun magazine October 26-28 at Esalen.

MY CAMERA BROKE. And so rather than buy another gadget, I may have to break down and get a real phone...

Is this post boring? I try to write every few days...next one will be smashing...

Chemo dates

More borrowing from David Shrigley

I changed my chemo dates back to Fridays, because changing was causing other hassles. Plus I had a huge bruise on my hand after the last one. I thought perhaps it was worth sticking with David, who only works Weds-Friday.

So the dates are Fridays: Aug 24, Sep 14, Oct 5. Also in the next two weeks, I have: PET scan Thursday, appt with Dr. Nelson the following week, and Dr. Littel the following week. I'd write the dates but I can't find my calendar at the mo.

After I picked up Lo at the airport, we went for a walk at the reservoir and saw The Bourne Legacy (didn't think it was that great.) I've logged over 10,000 steps today on my pedometer. I was sure it must be wrong...but according to my calculations it's less than 3 miles.

A couple of days ago I wrote about how crap everything was. Most of that has since changed. No more burning pee, and I'm sleeping much better and not feeling depressed. My feet and face are still (say 15%) numb.

Need to plan a week away toward the middle or end of a chemo cycle... sick of the city...

The Influence of Seventh Day Adventists

Before the camera was wrestled
from me, at Shrigley exhibit

I think that taking melatonin and valerian at night make me feel depressed during the day. It is very hard to isolate factors with depression...I haven't taken anything for a few days, and the depression, which I felt strongly in my body, is gone. And I have felt more awake during the day. I've also been walking for an hour a day...Anyway the last few nights I've done without them. I may try to take them only during the first seven days after chemo.

There are at least two different approaches to illness and discomfort. One involves taking all the recommended drugs for each emerging symptom. I feel that diet, acupuncture, and exercise, are the primary reason that I have not been devastated by the chemotherapy (yet.) Of course I can't be certain of that either. My diet is not very strict these days...I try to eat a lot of veg and no sugar. Yesterday I had very spicy Thai food (tofu and veg) and it seemed all right. Helen and Justin have made me a few meals, and Noelle, too.

My approach to pharmaceutical drug-taking is perhaps related to the fact that my mom grew up as a Seventh Day Adventist. She certainly resists prescription drugs. (For example, after 15 years of depression, which my sisters and I have found incredibly frustrating.) She says will work it out herself. This is exactly what I say. Of course when I say I will work it out...I actually do. Yes?

I like the fog coming in behind the school,
and the quality of the light

I think maybe some people conceive of drugs as solving problems. I think of them as potentially solving problems, and causing other problems. Chip off the old block. I think this saves me a lot of trouble (but maybe causes more, who knows.)

Yesterday: Pilates class so fab. They had a party for August birthdays so I was crowned, etc. It was really fun. Also picked up my barium which I drink in advance of my scan this week. Went with Amy to see David Shrigley's exhibit at the Yerba Buena. It was great.

I really ought not to think of myself as toxic. While I am being shot up with heavy metals among other things every three weeks, the toxins also weaken over the three weeks. And my body is 99.99% functional.

Had an excellent chat with the excellent Mike Osgood this morning, about tension in the heart, meditation, and sex.

Karunadevi's moving in soon, possibly tomorrow!

I am in fact taking up Lafayette's scarf aesthetic (from the HBO show True Blood), at least when I am at home.

Going up with Sebastopol with Tong today to this brother's house for Tong's birthday. Gotta go.

Bodily changingness

Inside a sculpture

Substances that my body produces, liquid or solid, smell sour and toxic to me, and burn. It's strange that my body can be at once so familiar and so unfamiliar.

I think: This is only the first half of it. What next?

My legs are numb, and my face.

My eyebrows fall out and lighten. Which isn't that big of a deal in itself. It's just that human beings tend to have eyebrows, so it makes me look like something else, unless I wear makeup, which then gets into and irritates my eyes (now that I think of it, probably because there are only a few eyelashes left to protect them. I didn't used to think of hair as protection...)

Flickering sensations of pain: stabbing, sore joints.

Outside a sculpture (Hayes Valley)

The tension collects in my heart, like a sentry that gets called every time I start to relax. Lying in bed at night, drifting off, then a small jolt in my chest.

It causes me to pay attention to my heart and unify myself, when it is not dividing me.

Sometimes with the changes in my body, I feel utterly alone.

Still, at least I have more energy than I expected. No sores in my mouth. I am vigilant about thoughts, usually predictions, that start to drag me down.

I had a great walk and chat with Nancy, talking about how we deal with our bodies. Then Misha, and a reiki session with Tania. One of the things that came to her during the session was that I am not alone. She said she saw me surrounded by guardians, protectors...

I didn't take any sleep aids last night for the first time in about six weeks.

From Ajahn Sumedho:

Notice how irritating it is just to be able to see, hear, taste, smell and touch. There’s always something that isn’t quite right...Just consider how sensitive we are in relation to words and thoughts. One can say things and upset everybody just through a certain tone of voice...We get a lot of guilt and remorse or self-aversion because of mistakes, failures or unskilful acts in the past that we remember...

Being born as a human being is a real challenge in terms of how to use this experience of birth, human experience, this sensitive state that we’re living in...It can be so utterly depressing that we think it’s better to kill ourselves. Or, as the Buddha encouraged us, we can wake up to it, learn from it, see it as an opportunity, as a challenge, as something to learn from. We can develop wisdom in terms of the conditions and the experiences that we have in this life — which are not guaranteed always to be the best. Many of us have had to experience all kinds of frustrations, disappointments, disillusionments and failures...Of course if we take that personally, we want to end it all very quickly. But if we put it in the context of knowing the world as the world, we can take anything. We have incredible abilities to learn from even the most unfair and miserable, painful and nasty conditions. These are not obstructions to enlightenment; this issue is whether we we use them to awaken or not.

Tune-ups

Baldy and the Medicines,
my new band name

I've been feeling depressed the last couple of days, in the morning and at night. I seem to be complaining more in general. I gave those talks about how enlightening it all is, then, crash. Perhaps. It almost makes me superstitious, like if you say everything's going to be ok, or that everything is ok, then the god/s will strike you down. Something about the low that follows the high, the confusion that follows the clarity...

Reading Sumedho's book on my non-phone iPhone last night was helpful. As was meditating this morning.

It occurred to me that I will have decisions to make if I still have cancer come November. I hope that I do not have to make those decisions.

What the I, Robot robots looked like.
Sometimes I'm surprised at how
north euro-looking I am.

Playing with various sleep aids. The Ativan pretty much doesn't work anymore so I'm going to try to stop taking it. I've gotten higher-dosage melatonin (10mg) and valerian (650mg), and marijuana (I used to call it 'pot' but now it's marijuana apparently.) There is an edge of anxiety for me about addiction but that's just a part of all I'm working with. I feel completely different when I get enough sleep.

Trying to type at my desk sometimes now rather than in bed. Posture is an issue, as the days and months pass, my shoulders move together in front, become concave. Will try sitting on the yoga ball too. It might not sound like a cancer issue but it is, because I've been hunched over this laptop for months in bed.

It's been sunny the last couple of days. I've walked by the ocean which I hardly ever do - with Viradhamma at Rockaway Beach (Pacifica), and Fort Funston with Lisa S. yesterday. My pedometer doesn't really work so haven't been logging the miles, but I can feel them. Walked up to Bernal Hill today with Elaine, Lisa Kee and Lauren.

Group chemo room at Kaiser...
Can you find Suvanna?

Feldenkrais this morning: all kinds of fleeting stabby achey feelings, and occasional chills. Mostly deep in my pelvis or in my hip joints or knees. My feet are very numb today, and, strangely, my face.

I had a carne asada burrito for lunch. It's not very healthy for me, don't know what I was thinking. At least I seem to have gotten over the sugar craving for the moment. Someone brought over coconut bonbons and there were cookies from Hawaii. I love not feeling any conflict about things that are bad for me...

Lisa Kee gave me an awesome foot massage this afternoon and I drifted off, bliss...

Movie last night: Millions, directed by the recently more famous Danny Boyle. It was good.

Digging my Gomez station on Pandora, and Christy Moore:

I, Robot photo from http://www.proprofs.com/quiz-school/story.php?title=i-robot_1

Talks online

Here are links to the very informal talks I gave at the Center last week and the week before:

July 25, 2012
Stage 4b: Lessons From Cancer

August 1, 2012
Stage 4b: More Lessons From Cancer

Very random

http://www.trueblood-online.com/
nelsan-ellis-confirmed-for-ring-con-in-germany/

I finally added tasks to Lotsa Helping Hands. Please sign up if you'd like to take a walk with me, etc. It's much easier for me to get together with people this way than it is to arrange individually...

Ater taking Jules to the airport this morning, coming home and smoking a tiny amount of truly, but not technically, medical marijuana, I slept most of the day, it was great.

Last night we caught up on True Blood. Lafayette's variety of head scarf/wrappings is truly inspirational. Unfortunately I can't tell how they are done...and I probably wouldn't have the patience anyway. But why must all the pre-fab head coverings for cancer patients be so incredibly ugly?

I don't know how to keep track of movies people suggest but I managed to find/watch a French one involving animated plastic toys, A Town Called Panic, on Netflix. It was fun. It was great to see an actual play, Humor Abuse, with Mary yesterday. I would like to see War Horse.

Bread wrapped in what appears to be a
French newspaper with a picture 
of the Eiffel Tower... 

My shoulders ache from too much laptop.

I'm surprised that I still have (albeit patchy) eyebrows but completely barren nostrils. Who knew that my nose hairs are more metabolically charged than my eyelashes? I still have very short hair on my head but it keeps getting finer.

I'm reading A Girl in Winter by Philip Larkin. Next is Middlesex (Eugenides).

Of the many gifts I have received over the last eight months, I have so far written one thank you note...I can't keep up with it all right now...so thank you!

May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.

From An Irish Blessing, by John O'Donohue 

"Don't worry about flaking out"

A tankha of Avalokitesvara (compassion
archetype) arrived from Trebor a few days
ago. Much more beautiful than this blurry photo!

Savanna came to SF today for a short visit, and went to part of chemo with Padmatara and I, and acupuncture. Afterwards we had croque monsieurs with mushrooms at Tartine.

We arranged to meet at 9am tomorrow before I head to a play and she heads home to New York. She said something like, "Don't worry about flaking if you're too tired or change your mind." It was delightful to hear. I am very unlikely to cancel but it was certainly nice to hear that, if I did, she would understand. It's true that I have spent a (relatively) colossal amount of time with people for the last...yeah, I don't know, must be at least a month or two now. I have enjoyed all of it, but it is a lot, and sometimes I feel almost overwhelmed. (I have all day Sunday unscheduled so that is great.)

I would also like it if you, dear reader, didn't take this to mean that you shouldn't contact me if you want to, but only that you may need to try to be very patient if possible because these days I am rather a hothouse flower (even if I do not always appear to be one.)

Two lovely ladies and
random folks getting infusions

The chemo session was mostly unremarkable, except no David and we were with other folks in the bigger room. I should have asked for the private, may well have been available...but my chemo sessions are long now, minimum of 5 hours, so getting a free room will be more of a challenge. Actually it was interesting being with other people. I was there the longest. Different people cycled through the other chairs.

AND they halved the oral dexamethasone - Dr. T. must have talked to them - and it was WAY better. I am prone to some kind of sub clinical mania...or maybe it's better to say just occasionally high strung. In any case this chemo and accompanying Rx...greatly amplifies that and I was starting to find it kind of torturous. Talking to the social worker Susan the other day, for example, I embarrassed myself because I felt like I was talking too much but pretty much couldn't shut up! I think I am much more sensitive to drugs than a lot of people, perhaps even more now that I've gone organic, etc. However, I certainly enjoy a mild boost. The onc. nurse I had today, Agnes, was surprised I was taking the anti-nausea stuff for five days - she said it was supposed to be three - but then I couldn't really remember what it was. (It's three days plus one morning on the fourth...the dosage seems to be the problem.)

I changed my chemo day to Monday instead of Friday which sadly means I won't have David anymore, but it works much better for my schedule, and also means if something goes very wrong in the days-after I can call the oncology nurses or my doctor rather than deal with a general advice nurse and go to the emergency room. So the new dates are three days later than the old ones: Aug 27, Sept 24, Oct 8. Have to double check with doc that doing blood tests three days early (Fridays) instead of one or two is OK.

Again the cross town quest to Misha's from chemo, very trippy. Misha was impressed that my oncologist didn't get miffed about the herbs. I gave him several sheets explaining the herbs and assured him that the interactions have been thoroughly checked, and he said it's fine...I see that I have an appt with Dr. Nelson on Sept 17, before my 5th chemo. I'm not sure if that's a mistake, as Dr. T said he'd be away for two weeks, not five. If it's not a mistake, I may consider changing oncologists. I love Dr. T, but someone more consistent would be fab too. (Dr. Nelson will be my third backup doctor, and it always seems to be during some scan which is when I want the same doctor the most...)

Sundry Items of a Less Linear Nature

Wisdom from the Ikea catalog

Ever since I said in my talk that things are simpler, I don't feel guilty so much, etc., I notice myself feeling guilty more. How'd that happen? I wouldn't mind so much but dag blastit I do feel slightly guilty about it...Oh BTW here is talk1 and talk2 on archive.org (click the link under the cryptic 'VBR MP3'). Eventually the talks will be online elsewhere with their brethren but for now this is easier.

I hope you like the photos on this page. I took them with my new/old iPhone (Internet only) that Viveka gave me. I noticed it takes longer to take a photo than with my camera, which you just turn on. On the iPhone you have to slide the thing, then click the camera icon, then click the shutter icon. Plus hardware is faster than software, at least at first - you feel it rather than look for it. So not as much spontaneity in the photo is possible, but then again I often have to move closer or zoom in with my regular camera because it seems to move people ten feet further away. On the third hand the iPhone names every photo photo.jpg which is hassle with importing into iPhoto, and into this blog, possibly only because I don't really know what's what with a Mac. I wish I had the energy to go to the Apple store, or listen to tutorials. I feel like I do stuff the long way. Anyway it's fun playing with an iPhone. Having only a dumbphone sometimes one can't help but feel like a dinosaur.

Trying on weird wigs
in the communal
infusion room

Some plans are cooking up for next year - retreats, mostly in far away places, and a couple of them very long. And my Tarot reading yesterday had a lot of strong, positive cards suggesting healing, prosperity, travel, strength, and meditation. So there. According to the potentially uber-reliable psychic-revelation.com, the 'final outcome card' in my reading has this meaning:

Introduction: The 6 of Wands is a very positive omen. It can indicate that despite the challenges you are facing, you will overcome them and come out on top. This card also points toward literal or metaphorical movement; things are changing, in a positive way. 

General: In general, the 6 is about happiness and celebration. You are about to see some results for your hard work and efforts. Give yourself a break or treat yourself in some way. You have certainly earned it. 

Health: If you're worried about health, relax. Things are not as bad for you or the person that you're asking about as you fear. There is an underlying, spiritual strength that will sustain the health of the person you're asking about. Take heart.

Two of the photos from this post a couple of days ago (click a photo to zoom in) show the cards in the reading, and a map explaining the significance of each in the layout, called the Celtic Cross.

A lot can happen in one day. There's more I could go into. I hope all this makes sense. It has taken me ages to write it.

Misc Dr. T info

Jerry and Eddie, Fresno

Had a short meeting with Dr. T because I pretty much forgot everything I could have talked to him about, then sent him a few questions on email.

He didn't seem to think the neuropathy was worrying, because it's off and on, and it doesn't hurt.

BTW he's going away for two weeks and will again miss my post-PET scan wrap-up. I don't really mind. Dr. Littel told me he wouldn't be going away anymore, but alas, shit happens.

A few recent email Q&A's:

Can we reduce the dosage of dexamethazone (steroid against nausea) in the infusion and/or the post chemo pills? He OK'ed trying the post-chemo reduction (8mg to 4mg.) I think it will make a difference in that I will be less stoned/amped, at least for the first five days. I got some pot which I will use for nausea, should some arise. I don't think I will need it but like having a backup plan.

Beading at Lo's

He said I only need to worry about infection, etc., if my white blood cell counts are low. Quote: "Your count is adequate. The important number is the ANC (absolute neutrophil count) which is over 1,000." I noticed that there is nothing in my blood tests that say 'ANC', but there is a 'neutrophils autocount' which is 1.8...Found out that 1.8 is the same as 1,800 ANC (well above the danger zone.)  

I have an appointment for the midway CT/PET scan on August 16.

If the scan shows that the lung nodules have grown, Dr. Nelson will decide on the new chemo plan. 

Finally, I asked him if I am likely to get addicted to lorezepam (Ativan) after taking it nightly (so far I only take 1) for 5 months. He replied, "It can be habit forming as with many sleeping agents. However I strongly believe that a good nights sleep is critical." Which I guess is a yes. Natural things like melatonin and valerian don't really work. I should probably get higher dosage and try again...a friend also suggested Restaid, which I will run by Dr. T...

Chemo tomorrow morning, three out of six.

I feel kind of fried.

Spinning head

Busy busy busy. Not getting as much downtime as I'm used to, although I've felt fairly energetic the last couple of days. Meeting with a couple of people every day, and sleeping, and medical stuff.

Yesterday Jane Clark (cancer pilates) came over and did a little session with me. Fairly subtle movements, and very few off them, but today my sacrum is sore. She also called me this morning to see how I was doing. She seems very skilled at what she does.


My process of becoming a private preceptor is going well. The three-month consultation period ended July 31. For those of you who aren't familiar with this process it's not that easy to explain. The short version is that once you've been ordained for 10 years, someone can ask you to be their preceptor, which means that you will ordain them when they are ready. It involves a lot of people agreeing that it's ok for you to do it, that there aren't any major or unresolved conflicts with the 2,000 Order members (or anyone else involved with this Buddhist community.) And you ask those that know you best write feedback, areas you are skillful in and areas of challenge. There are some more steps to come but so far it has been a wonderful process.

I asked about cancer and the future...
turned out fairly positive in terms of travel
and vitality. Photo by Ken Finberg

I drove to Kaiser twice today. Fasted over night, went to Feldenkrais/ restorative movement, had pre-chemo blood drawn this morning, and met with Dr. Tavakoli. Wanted to go to the art in recovery thingy as long as I was down there, but came home and fell asleep instead. I will write up info from  Dr. T. in a different post.

Also gave informal cancer talk II at the Center tonight after meeting someone for dinner and getting a tarot reading! I was happy enough with the talks and will post a link here as soon as I get them on freebuddhistaudio.com (was encountering a lot of errors and gave up for the time being.) They will appear at some point...

Padmatara came back from her monthlong solitary retreat! We watched Salmon Fishing in the Yemen, which was a bit corny, but Ewan McGregor is so cute it doesn't really matter.

from http://www.angelpaths.com/spreads3.html

I'm listening to the audiobook Wicked. It's very enjoyable.

My head is kind of spinning. Need to figure out a way to get some more down time.