Friday, September 28, 2012

Personals ad #2

My friend Mike and I got together tonight and talked for many hours, tried on wigs, and went to Thai House for dinner. OK, and smoked a small amount of strictly medically necessary weed. I've known him for around 12 years and it was a first. We were talking about relationships (to the extent that we could focus on one topic.) Based on some things I apparently said, he put together the following excellent start to a personals ad for me:
  • I've never been in a relationship that was satisfying.
  • I can't think of anything positive about any of them. 
  • I mostly never see anyone I'm attracted to, except sometimes in movies.  
I thought for effect it would be good to add:
  • I have terminal cancer. 

For some reason, it isn't nearly as funny writing this as it was saying it. Maybe you could smoke a J and read it again?

Cup thing not used
during my massage
We talked some about our teenage years, which were remarkably similar, happening as they did at opposite ends of the country (Southern Cal. and Maine). It seemed that on the subject of my past relationships, I often don't have anything positive to say. It's not that I feel I've been abused or misled, mostly just that I've been an idiot. It sounds harsh. I can't justify feeling this way, it's what has happened though. There are things about relationships that I miss sometimes. Anyway, even though this is my True Confessions Blog of Cancer, I find this topic kind of embarrassing, so never mind.

P.S. I still have a lump, a small cyst, on my wrist. It might have gotten smaller in the last week.

P.P.S. Got a massage yesterday up the street at Relax Feet. Getting a massage these days can be slightly stressful, my body being unpredictable, and I don't tell them about the cancer because then I get a shitty massage. Anyway the massage was great, except the part where the masseur rubbed off my eyebrows.

Thursday, September 27, 2012

Round two slooooowly draws to a close

Apparently it's common for the end of treatment, and near the end of treatment, to be hardest. Amen. Beneath everything, beneath whatever I am doing, whatever I am saying, I am waiting, waiting to find out if I still have cancer. It's always there, the question, the waiting. These days they're rubbing together like a cricket's wings.

For the last couple of days, I've been feeling pretty healthy. Bowels seem to be embracing the Middle Way between the extremes of nihilism and eternalism. My feet occasionally feel like they have been replaced by padded 2x4's. They are very alien, but they don't hurt, so far. I walked to Misha's today (takes about 45 minutes at what is for me a fairly brisk pace). The first while after chemo #5, probably because of various other drugs, maybe because my blood counts were low too, in addition to the specific issues I was having, I felt really weird, and I don't any more.

In terms of media, last night I enjoyed The Reader with Kate Winslet and a cute German kid, and reading Cancer Has Made Me A Shallower Person, again. It's very good. I'm sorry its author and illustrator, Miriam Engelberg, did not survive. Before she died, did she think, Will people read my book some time in the future and be sad that I'm dead? I wonder.

I'm frequenting the lie-berry lately, requesting books online for delivery to the Mission branch. New one today: being well (even when you're sick) by Elana Rosenbaum. It's about mindfulness for people with cancer, looking forward to checking it out. I may add a page here of book recs for people with cancer.

As a last-minute fill-in tonight, I taught the drop-in meditation class. It was delightful.

Tuesday, September 25, 2012

An issue of bilateral symmetry

Another example of what I don't look like
Slept last night without aid, after reading much of the amazing graphic memoir called Fun Home (ironic), by Allison Bechdel. Her angry, sad father appeared in my dreams...

And I woke up feeling sad. Sad that I am still dealing with cancer, and isolated in my body in dealing with it. There is plenty to be happy about, too, but the feelings this morning were bittersweet. Fall in San Francisco. You don't see it so much, but you very much feel it in your body, and everyone says they're tired. I'm not feeling so much tired as tired of.

I wonder if part of the reason for my apparently eternal equanimity and/or optimism could be Prozac. I take a very small amount, and every other day, but still. (Actually these days I'm mostly forgetting to take it. Hence the sadness?)

I still have a lump just above (anterior to) my wrist. The swelling's gone down and it hurts less, not sure I can be bothered to get it looked at.

Anxiety, or a misplaced eyebrow?
Daily eyebrow creation is getting more challenging, so little real hair left to guide the pencil. One sometimes ends up above the other and I have to erase and start over again. Drawing symmetrical things has always been challenging for me.

I added some important info about British usage of the word "cunt" to the end of this post if you want to get the latest...

Way fewer people read these updates than used to. Sometimes people apologize to me for not reading it. If you don't read this blog, you are not reading it right now. But just in case you are accidentally reading it right now, I want to let you know that I have no expectation whatsoever that you read this blog. It is 100% voluntarily.

So no need to apologize for not reading it, or not listening to a talk I posted, or not doing whatever. Everything is fine. Everything is voluntary. I'm still writing it for whomever wants to read it, and for myself.

Monday, September 24, 2012

Sunday, September 23, 2012

Grease head

Constipation, insomnia, depression?
All right. I have identified that my trouble is not coming from the shots I am giving myself. It's the Trazodone that was making me more lethargic, in my guts and in the rest of my body, and depressed EVERY DAY. I wish I had gotten Ambien. At this point, I don't care about the potential addiction, and with other drugs I have taken, it is not an issue. Traz is crap. I didn't take it last night and already, today, I feel so much better. Constipation is a potential side effect of BOTH Trazodone and Neupogen (the shots.) That's gotten a lot better, too. Today I did develop a reddish bump on my forearm above my wrist. Folks thought it was probably a spider bite. I'm going to take some Benedryl tonight, see if that helps.

I used to have oily hair. Now I have an oily head. Makes sense, doesn't it? My head has a kind of muskiness that transfers to my head covers unless I take precautions. I seem to favor one-step head covers for around-the-house needs these days, like the one that Nora sent me (pictured below) from Hawaii, and a few buffs that Dhammagita sent. I'm using the pretty scarves, too, but mostly not wrapping them around my head.

Hippie acupuncture
I don't even look like this.
My face is still a bit numb, that hasn't changed. Someone in the support group yesterday said she had had that too.

Listened to a bit of Malcolm Gladwell's What the Dog Saw tonight. Fascinating, especially the part about Cesar Millan, analyzing how he moves...

Movie night on Bartlett St.: Watched a bit of Koyaanisqatsi. And Quadrophenia including important Q&A with Padmatara. (So was it a clothing issue between the Mods and the Rockers? Is that Sting? What's Beachy Head?) It was astonishing how often the men call each other cunts. I suppose the equivalent here is calling someone a pussy. But it seems so much worse.

Friend from Britain clarifies:
Pussy is saying someone is a wimp or cowardly or feeble (basically a man who’s seen as behaving like a woman in some negative way). Cunt is much worse (partly as it’s always been such a taboo word) – it’s someone who’s a complete bastard, or totally stupid, or really thoughtless or selfish, etc, or simply someone you hate - more the equivalent of asshole for you, but actually I think it's more weighty than asshole. Of course as always it depends on who’s saying it to whom. It’s so long since I saw Quadrophenia I can't remember it – but often it’s used as a sort of friendly banter way (like any other insulting word can be).
You may also be interested to know that calling someone a ‘berk’, while it sounds much less insulting (and indeed is generally intended as much less insulting) actyally means cunt, as it comes from rhyming slang – Berkely Hunt/cunt.
So my summary is, a super harsh yet almost friendly way for a British male to refer to a male friend, using a very bad word for vagina.

Friday, September 21, 2012

Only three things

Made soup yesterday:
various beans, kale, portabello, zucchini, corn
I've decided I need to pair down my calendar to three things per day. For example, yesterday: skype call with Pasadini, acupuncture, and dinner at Foreign Cinema with Danamaya and Julie. Today: pilates class, Kaiser support group, and skype call with Kathy.

I skipped the pilates today though and stayed in bed watching a movie, Walking Tall, recommended in a nonfiction book I am reading. I must agree with the incarcerated ladies in my book, that Wayne Johnson, who hails from Hayward, is super fine. It was a good movie. My barometer for that is based on whether, or how many times, during the movie, I think, That's dumb! or That doesn't work, or What a shitty actor. It's pretty much a violent vigilante movie about a guy who always does the right thing...and very well done! (Apparently the ladies in the West Virginia prison didn't care for Lost in Translation.)

The Kaiser support group was good, some sad stuff. Terry and John weren't there so not as many regulars. One lady doesn't have a stomach. (I almost said, Wow, free gastric bypass surgery but decided against it.) A new guy with slurred speech from a tumor on his tongue told us about trying to walk to the bathroom and passing out in his apartment...I like going to that group. Two women - including one with a tracheotomy - had been clear of cancer for six years, and yet they attend this group every time I've been there.

Le shot.
Two more days.
And I heard that there is a shot you can take for blood counts which you do only once (as opposed to seven times like the one I am doing!) It occurs to me that their blood counts might have needed less of a boost because of the kind of chemo they're doing? Anyway if it's suggested I do the daily shots again after the next chemo, I'll ask about it.

My digestion feels like it has completely shut down, and I don't want to do anything, though I know I need to and that following the impulse makes me feel worse. I must go for a walk before I talk to Kathy...

Wednesday, September 19, 2012

Subtle stress

Wonderful sleep last night, though presumably the Traz is the reason for the astonishingly vivid, deeply realistic dream, or sequence of dreams. In it/them I remember feeling the exact cancer-related physical sensations I have in waking life. I kept waking up or becoming conscious in a new place, not remembering how I got there, or what I had done. I had the thought at some point that I need to just go with it, that if all this crazy shit was going to happen, there was no point in fighting it. And things got easier. But I would kind of phase in and out of knowing that, and wake up in another place. Finally, I went into a Tibetan gift shop and asked the lady behind the counter if she'd be willing to help me if she happened to see me wandering around. At first she was skeptical, but then she agreed. I woke up disoriented, still thinking it had all happened (perhaps it had...), but that this time had managed to land in my bed. Still, I had that rare and wonderful feeling of having slept deeply.

Dawn practiced some craniosacral on me last night. So relaxing, and so much energy, too...vibration and release. At the end she said something like that the left side of my body seemed less alive. This felt true to me, too. I should clarify that the night of having slept deeply is more likely due to the craniosacral than the Trazadone, which doesn't work that reliably and so far, makes me groggy the next day.

Padmatara came with me to Feldenkrais this morning and loved it. She said it was like going on retreat, so true. It is a wonderful, subtly transformative mindfulness practice, and I keenly feel the change, almost a softening of the nerves, by the end of the class. At the beginning of the class I am aware of the subtle stress - this sort of jerkiness - in my body that smooths out by the end. The focus of the lesson was the softening of the eyes. It was fantastic. Then Lands End, which apparently doesn't have an apostrophe, was exquisite, though I have to force myself to walk. I think the shots are giving me motion sickness (just from walking) and if I might add, turning my bowels to rock. I could take yet more drugs to counteract the drugs counteracting the drugs... So I came home and had leftovers for dinner and wrote in bed for many hours with my new heating pad on my feet. Watched Sweet Home Alabama which made me tear up a few times even though, or because, it was so sentimental. (Candace Bergen was funny.)

Monterey Cypress at Lands End
Here's a talk I enjoyed giving at a Gay Buddhist Fellowship meeting recently. Today Bhadra commented on Facebook:
Thanks for posting this. I listened to it and was left with a sense of relief and gratitude brought about by your sharing with clarity and without drama your personal experience of the human condition. The close possibility of death and the perspective it gives has been taught many times but when it becomes personalised it becomes a very powerful teaching. Thank you.
Here's a very good book, so far, by the late Darlene Cohen: Turning Suffering Inside Out: A Zen Approach to Living with Physical and Emotional Pain.

I'm seriously considering not saying 'dude' anymore.

Today @ Lands End
On a crowded tram the other day I listened to a couple of young white women talking next to me, sounding, frankly, like idiots. Which is to say, they sounded quite a lot like me. So many superlatives and hyperboles, as if every feeling were the most important thing ever to happen.

I used to embrace my righteous roots in Southern California idiom, but I just don't know anymore. It's like the time in the 7th grade when I started hanging a silver heart from one of my hoop earrings, and within months around Davis Middle School there was nary an earring without a heart dangling from it. Admittedly, these kind of trend setting events have been infrequent in my life. Still, fifty percent of current Wichita bankers are reported to have accents with origins on surfboards in Newport Beach. Thanks, Hollywood.

But wait a second. Does my way of speaking derive entirely from Southern California, circa 1976? Might I myself have parroted some of it from The Simpsons and South Park? Still, maybe I'll see if it's possible to stop exaggerating and saying like, just one day at a time...

I'm not saying any of this has anything to do with cancer, and I'm not saying it doesn't. However, as even John Muir would have to agree, When we try to pick out anything by itself, we find it hitched to everything else in the Universe.

And from Susan Moon:
"I think I've earned the right to break free from the imprisonment of sequential thinking." 

Tuesday, September 18, 2012

Swimming in a pharmaceutical soup

Botanical gardens
I gave myself my first shot today, which, currently, is yesterday. It wasn't hard to do, nor was it painful, but afterwards I felt like a bona fide*, dazed cancer patient. Much improved after a hour's schlep up the hill with Padmatara. Total today: 11,400 steps. Now I get to lie in bed!

Two days after I fixed up my bed so I stop being too hot, was freezing cold almost no matter how many piles and layers of blankets. I bought a heating pad today to wrap around my numb feet.

Here are some more details about medications I'm swimming in, if you're interested...

Friday Chemo Day 
1 Zyrtec, 2 Zofran (actually I think she gave me dex, I was super manic.)
Interveniously: pepsid, dexamethazone (dex), taxol (Paclitaxel), Carboplatin
Evening: Zofran, 2 senna, marijuana, 1 Trazodone

Saturday Day 2 (of 3 week chemo cycle)
1 Dex, 1 Zofran
All day supplements, Chinese herbs, glutamine, probitics
1 Zofran, 3 senna, 1 Trazodone

Sunday Day 3
1 Dex, 1 Zofran
All day supplements, Chinese herbs, glutamine, probitics
1 Zofran
1 Benadryl, 2 Ativan

Monday Day 4
1 Zyrtec, 1 Dex, 1 Zofran, 1 Prozac
1 of 7 daily self-injections of Filgrastim (Neupogen), to build white blood cells
All day supplements, Chinese herbs, glutamine, probitics
1 Zofran, 1 valerian, 1/2 Trazadone, 2 Ativan (+ 1 c warm milk!)

* Spelled this bonified the first time, but it just didn't look right...

Monday, September 17, 2012

Sleep 'n' drugs

Dr. Nelson gave me some sleeping tips at our meeting last week, most of which, I am already doing:
  • exercise early in the day
  • caffeine early in the day
  • drink warm milk 
  • go to bed at same time every day
  • don't take naps
  • don't do work or watch t.v., etc., in bed [definitely guilty of this but I have since moved my computer to the desk...]

I wonder if any of these things really apply to me. It's not that I'm not sleepy, I lie in bed very physically and mentally tired, get to the point just after which I would ordinarily be asleep. But my body either just stays in the 'almost asleep' state, or more often, slides up and out of it again, back to the start. If I'm tired during the day, I can lie down for hours without falling asleep. All these things are entirely new. According to Dr. N., there's nothing about chemotherapy itself that causes insomnia, other than mental stress. I don't feel stressed (well, other than the last couple of days!) Yet during my first round of treatment in Jan/Feb, I slept a lot, especially toward the end, 10 or 12 or more hours. And before this ordeal began, I was a champion sleeper. I don't even enjoy it anymore, possibly because it's usually drug-induced or not very deep. It's kind of like a job now.

Friends in my bedside drawer:
Trazodone, Benadryl (diphenhydramine),
valerian, melatonin, lorazepam (Ativan).
I asked her for a prescription to Trazodone, recommended to me by two people as a sleep aid.  I have since looked it up and seen that it is an anti-depressant that makes you sleepy. It's supposed to be non-habit forming, but Dr. Nelson seemed dubious about that! I don't feel like I'm much of a risk for addiction, but I'd prefer take something not narcotic/less likely to affect me the next day. On the other hand, it seems that I feel sleepy the day after I take the Traz. Perhaps I'll try to take half? And even melatonin (10mg, kind of a big dose) makes me feel depressed the next day, so I have stopped taking it...

Smoking marijuana has allowed me to go to sleep a few times. Dr. N. said, as I suspected she would, that smoking a small amount isn't going to effect the tumors in my lungs. She also said most of her patients use it for nausea, and they eat it. But I'd rather smoke it...and I don't want to eat brownies or whatever it is they put it in.

Last Tuesday night, no pills, just a couple of puffs of mostly ashes, and then I fell asleep. But last time, after chemo (I felt quite manic!), it did not make me at all sleepy, only ravenously hungry, which is why I haven't liked it, recreationally speaking, for decades! Of course the lethargy was also part of what I didn't like, but now I'd like only that part please.

Wikipedia currently says: The effects of [cannabis] sativa are well known for its cerebral high, hence used daytime as medical cannabis, while [cannabis] indica are well known for its sedative effects and preferred night time as medical cannabis.

Not great writing...but I wonder which kind I have?

They gave me a "Volunteer Identification Card" letter during chemo on Friday. It costs $103 to get the card. Not sure if I really want/need it? It's not like it lets you travel with marijuana. (The whole deal in terms of the legality seems a bit...hazy, and subject to the discretion of the Feds.) Of course, this city seems to be well stocked with pot smokers who show little concern, judging by the aroma/smoke clouds one occasionally walks through. Since I'm smoking a tiny amount, once or maybe twice a week, by myself in my house...arrest doesn't seem much of a risk, and I don't think I need a card for supplies

It's funny, when they gave me the letter, there seemed to be a vague sense of embarrassment all around, even from the medical people. I'm assuming it's because there are so many people who are not really sick who have the cards? That's all you hear about really, that virtually anyone who wants a card can get one.

Some background:
Californians first approved the use of medical marijuana for the seriously ill in 1996. While marijuana remains illegal under federal law and some cities and law enforcement officials take the same view, storefront collectives were approved by the state Legislature in 2003 and operate under guidelines published by then-Attorney General Jerry Brown in 2008. 
Read more at the San Francisco Examiner:
If any of you know of any distinct advantages (or disadvantages) to a sick person having a medical marijuana card, please let me know!

Sunday, September 16, 2012

Why the ads about hair loss today? And more on the subject of "looking sick"

I went for a forest bath in the Botanical Gardens with Vicky yesterday, who is a teacher over at Zen Center and an Iyengar yoga instructor (and probably other things!) At lunch she asked about wearing the wig, I think. Well, anyway, I remember saying that I don't want to walk around with a head screaming cancer patient. However sick I am, I do not want to look sick before opinionated, even concerned, strangers. (Although not looking sick, when you are, also has some disadvantages. For example, someone seeming to be jealous that you look perfectly healthy but somehow get to spend a lot of time going to acupuncture or Feldenkrais classes, etc.) She - having been involved in some bad accidents and dealing with a lot of ongoing trouble - agreed that she doesn't want to look sick either. She also mentioned that when she had shaved her head - part of Zen tradition - she noticed lots of people on the street staring with a strangely concerned and shocked look, no doubt thinking she had cancer. My wigged head felt affirmed.

Rigoletto's brew of humor and hatred...
Later Mary and I went to the Rigoletto simulcast at AT&T Park - it was great, but hella cold - and I mentioned the conversation with Vicky. Mary, who also has some health issues, agreed that she doesn't want to look sick either (knowing, too, the downside of being sick but not looking sick...)

This morning I got ads for hair loss products on two different web pages. I haven't googled anything to do with hair for quite a while, but I have been talking about it...Has to be a coincidence, right?

I am very tired today, even with the morning dex/steriod. The last couple of days have been somewhat stressful, mostly due to feeling I must race across the city several times in bad traffic or public transit situations. Like yesterday I finally got a cab to AT&T Park after just barely missing my bus, and the next one coming in 40 minutes. The taxi driver confirmed that the traffic and gas pipe replacement situation in San Francisco has been dire lately. I also read in The Examiner the other day that Muni service is getting worse. Of course, I don't know if the several battles with the clock are the cause of this fatigue; the source could be just the chemo or blood cell depletion...or whatever.

Enjoyed some luxurious puttering around today, listening to Jeff Buckley and Bjork stations on Pandora...I've logged 1,731 steps today so far, without going outside...laundry, cooking and washing dishes, keeping up with the pills and potions in the right order at the right time, bills, banking, trying to figure out why my printer (which has no cable) doesn't work wirelessly anymore. (Why does it seem that computer related documentation is mostly useless? As a former technical writer, it rattles my cage.) And trying to contain/organize/maintain the proliferating collection of gadgets, scarves, wigs, papers, and makeup in this room...

Saturday, September 15, 2012

Optimism on steroids

I got a 'resin composite' temporary filling yesterday - a layer of mild acid to help with bonding, a layer of bonding, and a slightly colored top layer, with no anesthetic. It hurt a bit, that searing, nervy coldness you can feel only in your teeth at the dentist, and it is only at the dentist that you mustn't move any part of the inside of your mouth when you feel it. I think when he was doing the acid, he told me not to move my tongue, which was difficult. Apparently my tongue had been flying all over the place. It's so incredibly awkward having someone plumb the depths of your mouth - with all that weird equipment, weird sounds, smells and pain. Anyway the whole deal lasted only 30 minutes, and now the upper left side of my mouth feels way less sensitive than it has for a long time. I will need to get a crown eventually, but this filling will last years. My dentist, Anson Louie, is a very sweet man. He seems upset by my cancer, and to know nothing about it.

My capacity for medical details has greatly increased. I don't have to write things down so much anymore.

This morning, my alarm clock did not make any noise, so I randomly woke up at 8:35, ten minutes before I was supposed to leave to get to chemo. It takes me more than ten minutes just to rally the various aspects of pretend-hair I have going these days. I don't like being late for appointments.

Chairs facing the window
I'm in the infusion center on my own today. Julie is sick and I decided to use the hours here on my own so I could catch up on various things I need to write. I'm in the group room, mostly buried in my laptop or a magazine. The other patients are primarily older men, except one woman, ah, her and her friend just went to the private room. That's one advantage of having someone with me! The woman who replaced them mentioned her 50th birthday is coming up, so it's not all oldsters, the definition of oldsters being, of course, older than my current age. She has multiple myeloma in her mouth/teeth, for which she got radiation, horrible!

After around two or so hours of the Taxol infusion, my face goes pale, and I get super spacey. Walking and dragging around my chemo cart helps. And it's great to get some stuff done. I've written 12 emails into my Outbox folder, so far. Also read The New Yorker and The SF Examiner...and some of Time which says that,  every day, one soldier or veteran in the U.S. commits suicide...

Yesterday I had a skype call with Pasadini – whose self and cat have on several occasions rocked the photography on this blog - and who happened to have been diagnosed with follicular thyroid cancer on that very day. She's a good friend anyway, but there's something about talking to someone with cancer that is additionally satisfying. She hasn't talked to an oncologist yet; possibly she will only need surgery to have the lump removed...I hope so. It seems to me, so far, that the Cancer 'meme' is far heavier than the actual experience...But people (older people, unhealthier people?) often have more trouble than I...I think that the severity of side effects are always going to be relative, to some degree, to how bad you imagine it to be. I thought I was going to be deathly ill. For several weeks I was in a lot of pain from having my entire pelvis burnt outside and in, and I have many side effects, but so far, especially this round, nothing too severe. I think in this country the biggest issue is money/medical insurance. If you don't have it, or you have shitty insurance, it's financial - if no other kind of - ruin.

For long infusions like mine, they don't use needles that are metal anymore. It gets put in via a very small sharp metal prong that punctures the skin, then the metal part is pulled out. The tube penetrating my skin for six for so hours is plastic and very small, so I can type, for example, and not feel it. My onc (pronounced 'onk' as in 'honk') nurse today, Karen, seems to be better than David at non-bruising, and now there is hardly a mark on my hand.

Karen gave me some more detail white blood cell counts. The five different kinds of white blood cells correspond to levels of maturity. Neutrophils are the most immature, so they bode well for the future! But my overall white blood cell counts dropped a lot in three weeks. If the “absolute white blood cell count,” calculated by an algorithm using total white cell count and neutrophils, is less than 1.5, they usually postpone chemotherapy. Mine is 1.4, dang (but of course Dr. Nelson said I could go ahead, which is why I am here, yay!) So I'll be giving myself the daily shots (Nupogen) this time, the bone crusher (hopefully not) to help with blood counts. I might have to do it after my last chemo also. Last round, I kept wanting the treatment to be postponed. This time, having reached my potentially penultimate (thanks for the vocab Dhi) chemotherapy session, I will do whatever I need to do to make sure it happens, so I get to finish and go to Mexico for three weeks!

Cancer Central in San Francisco,
the view from chemo room
Found out today that there are many research facilities, studies, pharmacist trainings, and teaching hospitals here, such that I was correct in thinking that I am lucky to have gotten cancer while in San Francisco. The national nursing shortage does not apply here, where it's very hard for nurses just out of school to get jobs.

Is Obama secretly in town? The drive to Misha's was nightmare, as my Russian friend used to say. I felt capable, not too spaced out to drive, but downtown was a sardine can. I thought I had picked the perfect route (Geary to Stockton, simple!) but it seemed that every street I turned on had a detour. I haven't driven in traffic that bad in a long time. Next time, either drive home and take BART, or cross Market street sooner rather than later, avoiding downtown. According to google, it's 2.6 miles. It took me almost an hour. Mercedes, who works at Misha's, said that when that happens they often find out later that Obama was in town.

I told her a little about the talk about herbs with Dr. Nelson. I said, But Misha is kind of famous, isn't she? Mercedes said, She's a legend. Vicky Austin from Zen Center said today, she's the best. I am so grateful to her.

orange jet smoke
Line of sunset-infused jet smoke, and beneath it,
some interesting, if barely visible, lines, and
Sutro Tower in the distance, wearing its skirt of fog
I smoked some weed tonight, which made me ravenously hungry, and not sleepy. So I'm going to lay off the stuff for a while, that is NOT what I need. Kathy warned me not to bring marijuana to Singapore. Apparently whenever they come across a medical marijuana card, they set it on fire.

A note about the post title: Putting together my upgraded bed, I was reflecting on my Skype conversation with Kathy earlier tonight. I spoke with great ardor on this round of treatment, and my optimism about outcomes. And about how kind of odd it feels to be optimistic, either because of my formerly nihilistic tendencies, or perhaps from having experienced as an American too much forced optimism. I feel very optimistic about Pasadini, too. And all this optimism is on steroids right now.

I wonder of all the people in the US who get whatever kind of cancer, how many of them die within 5 years? A great many people recover from cancer, Lance Armstrong isn't the only one...

Thursday, September 13, 2012

Everything is fine, and everything is not fine

What I mean by 'pre-chemo blood tests'
(though I don't say it in this post.)
Photo by Paulette Cullen.
I had an incredibly busy day today, by my standards. Intense skype call (more on that later), then shopping for bedding at Anna's Linens (that place is huge! don't think I've been in there before, it's around the corner from here), rushing back to wash said bedding, probably breaking washing machine (smelled burning, possibly someone's bbq smoke, during spin cycle), then getting stuck with needles at Misha's, driving way across town to fogland and the dentist and those smells and sounds and cold tooth nerve pains, then looking for parking off Barlett St. because of the Farmer's market, walking home buying stuff at Walgreen's, and three colors of beans (green, purple, and yellow) at market, then teaching the drop-in meditation class with Dawn, then getting the car and bringing back to Bartlett St. Well, it sounds like a lot to me.

And now it's 10pm, and I have to wake up early (by my standards) for chemo, so details - including anything relating to the title of this post - will have to wait...

Wednesday, September 12, 2012

The doc's point of view

Spent a couple of hours on Geary street with Padmatara this morning, mostly waiting for my name or number to be called, or to appear on a screen. My name there is my old name, Lisa Cullen, one of the very few places, other than the bank, that it is still used. We picked up a prescription, met with Dr. Nelson, and did my pre-chemo blood draw.

Dr. Nelson is my main oncologist now. Manner-wise, she's uptight compared to Tavakoli. But I guess being entertaining probably isn't the main thing one should look for in a doctor. In any case Padmatara noted that I have improved whatever the patient side of bedside manner is. Well. She didn't say improved. She said "more assertive and clear," I think.

I have been very tired and since we got back and have done the thing that a person with sleep issues is advised not to do (in fact was advised today not to do): lie in bed for...six hours. In the past I would have fallen asleep and then gotten up. But because my sleeping habits - or are they capacities? - have drastically changed, I can lie in bed for a long time without falling asleep. Still, resting is good.

One is supposed to reserve one's bed for sleeping (or sex). Instead of both, I plugged my new JLab speaker into my laptop and watched the end of episode 2 of Battlestar Galactica. I seem to be accumulating a lot of gadgets. I read half of this is getting old, a collection of sweet essays. I listened to a talk by Peter Coyote, who lives in San Francisco and is a Zen priest. I ate chili with kale, potatoes, and goat cheese.

If this blog is for conveying information, I have a lot of that to convey about the meeting with Dr. Nelson, but it's not very interesting to me at the moment, relaying the facts. Perhaps it is the fatigue.

I have a dentist's appointment tomorrow at 5:30. Dr. Nelson assured me that yes, going to a dentist in such a case is good. It's just that you don't necessarily want to schedule your regular checkups, etc., during chemo. It's an issue of exposing yourself to your own germs. (She says that's usually where the germs come from, not other people.)

Here are a few other things I talked to Dr. Nelson about:

Neuropathy - even though mine's getting worse, apparently it isn't..that bad! The danger signs are pain & losing balance. She said that the worse it is, the more likely it is to continue after chemo ends, in which case I am screwed. My feet don't hurt unless Misha sticks a needle in them. I just need to be careful of hurrying down stairs. But I do sort of worry about the neuropathy. My one worry, pretty much, is being disabled after treatment. (I suspect fairly regularly that I am repeating myself here, but if your memory isn't better than mine, then we're golden.)

Before switching to Dr. Nelson as my primary oncologist, I wanted to talk to her about 'complimentary medicine' and make sure she isn't going to protest. When I first brought it up she was somewhat skeptical. She mentioned being blamed by patients for problems caused by herbs. After I told her that Misha participates in studies at UCSF and checks the interactions very carefully, she seemed to relax, and said if it's worked for me for this long it's probably fine.

I had thought that doctors being skeptical about herbs, etc., was simply some kind of prejudice they pick up in medical school, but today it seemed to be more about her practical experience of people taking herbs adding work for them (to check interactions), and about causing bad interactions with the chemotherapy which the prescriber perhaps doesn't understand. Misha is not a typical acupuncturist. I also told her that Misha is convinced that the reason my blood counts have been so high is due to an herbal blend called Marrow Plus, an idea she seemed receptive to.

BTW I got my blood test results - counts are slipping but still aren't too bad. Dr. Nelson said Carbotaxol is not really the kind of chemo that you have to be super worried about in terms of getting infections. Slightly below normal range were Hgb, which I'm assuming is hemoglobin, and 'neutrophils auto-count'. I don't know what 'auto-count' means, but don't have the energy to look it up. Also platelets and hemocrit are just barely above the lowest range of normal. But I think the 'normal range' isn't normal for people on chemotherapy...

She said I don't need to worry about immunity for Mexico, but I should check with travel medicine to see if I need to get shots. She didn't think I would but wasn't sure.

Will save issues and updates about sleep for the next post.

Books in progress (or simply available by my bed)

this is getting old, Susan Moon
Orange is the New Black, Piper Kerman
The Nimrod Flipout, Etgar Keret
The Autotbiographer's Handbook, Jennifer Traig, ed.
The Essential Guide to Getting Your Book Published, Ekstut and Sterry

Tuesday, September 11, 2012

A toothless dream? and organic stuff.

Clement Street shopfront with four Buddhas
and a barking chihuahua (lower left) 
Here's an excellent talk by Beata Chapman on working with chronic pain (it's called "The Body/Mind Connection," August 26.) Someone from the Gay Buddhist Fellowship told me about it. In it she recommends her teacher's - the late Darlene Cohen's - book, Turning Suffering Inside Out. I'm lucky I haven't experienced much pain (lately anyway.)

I forgot to write that I did find out from Oscar and Debbie why their guest bed is so comfortable. It has a feather bed (same thing made of wool is good too) and a mattress pad and 'topper'. They said you could get them used, for example, on Craig's list. I looked up feather and wool beds online today, and they cost several hundred dollars and I couldn't find any used ones. I will keep looking. The cheapest pad or topper (can't remember which) was 100% cotton but somehow dowsed with chemicals that make it stuff sure is expensive...

We have really great chapter meetings on Tuesday mornings, where ordained women can check in about stuff, practice - in our particular group, a lot about communication...Marshall Rosenberg's system of Nonviolent Communication and Gregory Kramer's Insight Dialogue are both influential in these discussions.  We were talking this morning about the difficulty of expressing how someone is effecting us, not waiting until irritation sets it, just being aware of one's feelings and needs and communicating them appropriately. It is a rare event in the world it would seem. Things get all tangled up with guilt and 'how-I-or-others-should-be', adding layers of complication and confusion...but it needs to be worked on, just like everything else....

I've thought a few times today that my voice sounded harsh, even though I didn't feel harsh.

Perhaps they don't look so good,
but Honeycrisp apples in season are the BEST 
On the way home from giving $140 to the fine folks at Whole Foods, part of one of my back teeth fell out, painlessly. I didn't even know it until I felt the gap in the back of my mouth. According to a random internet tooth map, it's my upper left second molar, or you may simply call it "15", kind of like Agent 99 on Get Smart. I'll talk to Dr. Nelson about it tomorrow. I seem to remember that there is some problem with getting dental work while you're on chemotherapy. Some of my fillings are ancient, so it's not necessarily related to cancer/chemotherapy, unless it's somehow related to the 'weirdly numb left side of my face' syndrome. Or maybe it's part of one of those dreams in which all my teeth fall out. Perhaps I'll wake up some time soon, that'd be awesome.

'Cuz in this life/possible dream I've been feeling a lot of fatigue and craving, and ate four - or was it six? - very dreamy Dilettante dark ganache chocolates. Yesterday half a bar of Seattle Chocolates Dark Chocolate Coconut Macaroon Truffle with Sea Salt. Mmm. Having brought them back from Seattle, was planning on giving them away...better get on that, stat!

Monday, September 10, 2012


SF Botanical Gardens with Kitty
My last chemotherapy session, for this round anyway, is 24 days from today. (Penultimate is this Friday.)

Had a fab time giving a talk at the Gay Buddhist Fellowship on Sunday. What lovely guys. I was telling Padmatara, it's one thing to give a talk that people find useful, or moving or whatever. At this talk, I felt people's hearts open, how delightful that was. I'd post the talk here but they haven't put it up yet (looks like they haven't posted any talks since mid-August.) One guy who I bonded with during the Q&A about (non-) fear of death wants to give me a free massage.

Last night I watched Season 1 and episode 1 of both Battlestar Galactica and Oz. I read several essays and poems from The Sun retreat that I probably won't go to. I especially enjoyed this story by Frances Lefkowitz, The Gifted Classes. It's about growing up poor and angry in San Francisco, very beautifully written.

In general, I'm feeling hella bored with cancer. Ten months!

Sunday, September 9, 2012

My disease sounds bad

"Stage 4b Cancer of the Vagina"

...But there have been positive developments since the initial diagnosis. I looked up my current 'Ongoing Health Conditions' and found:

INSOMNIA 08/22/2012

Medical terminology is often disappointing. It seems to simply translate your symptom into a different language (Latin), implying some level of understanding that may or may not be.
Poly-neuro-pathy = “Problem with more than one nerve.”
Adeno-carcinoma = glandular cell cancer.
In-somnia = 'not-sleep'.

A view from the Ferris wheel, downtown Seattle 

Anyway, currently I have metastatic ('rapid transit') cancer in my lungs, plus  insomnia, numb feet, numb left side of face, slightly low immunity/white blood cell count (last time we looked), alternating constipation ('constriction of body tissues') with diarrhea ('flow through'), and alopecia ('fox mange'). I also have the vitality for a fair amount of perambulation, dialoguing with fidus Achates, disease and symptom management, and inscribing these notifications.

Two anecdotes:

At my last exam with Dr. Littel, he referred to me, again, as 'young'. I asked, "So what exactly makes me young compared to your other patients, that I am not 70?" He said, "No, that you're not 85."

Someone with stomach pains visits her doctor, who asks if anxiety might be the cause. The patient says, "Well, I am afraid of dying of cancer." The doctor replies, "We're all going to die of cancer."

Friday, September 7, 2012

Needles in my face (Yay!) +

I, Robot couldn't resist taking this photo even tho
it meant lifting hand/arm with needles in them 
Got back from Seattle yesterday and went straight to acupuncture. I've got a numb face which has gotten small sores on it as well, only on the left side. Misha put lots of needles in my face and in my feet, one of which, when she put it in, made me practically jump off the table. Some of them are painful when she puts them in but it's the kind of pain I don't mind. She said she hoped the face thing wasn't shingles (herpes zoster) which people can get from chemotherapy. I'm wondering now if it might be simply from getting too much sun in Seattle. It was sunny and hot and I went for many long walks.

I was lying there with all the needles in me, thinking about how I might describe how it feels. It's not easy because there isn't anything I can think of to compare it to. It's energy, like there's something more alive about one's body. But it's not energetic, it doesn't make you want to do something, not like energy you get from, say, caffeine, or even meditation. It's subtle but somehow intense. I'm sure it doesn't look wonderful from the outside, though it certainly feels wonderful. It gives me a completely different, joyful experience of my body.

Best breakies ever at Oscar and Debbie's
with The New York Times
Today, very tired. Went back to bed instead of pilates, which I've missed for the last two weeks, and will miss next week because I'll be at chemo. The guilt was subtle. I felt great when I got up at noon.

When I was in Seattle, I noticed that people tend to share their health problems with me. My friend (who is younger than me) said he's worried about what he's going to be able to remember, and how his eye sight has gotten very bad. And as people age they spend more and more time dealing with health issues, many of the same ones I have - bowel issues, lady parts, insomnia, cancer, fatigue, memory loss, hair loss, and more...

I did read about a study on exercise in middle age and how it can help (other people anyway!)
...the results show, in essence, that being physically fit “compresses the time” that someone is likely to spend being debilitated during old age, leaving the earlier post-retirement years free of serious illness and, at least potentially, imbued with a finer quality of life. (from this New York Times blog article.)
By 'exercise' it doesn't mean doing a marathon, but simply walking for half an hour a day.

And some misc. stuff:

Saw the movie Samsara at the groovy Cinerama theatre. It was riveting, and beautiful, though some of it I would say had too much of an obvious 'liberal agenda' even for me.

It finally dawned on me that I accumulate things to read and listen to at a much greater rate than I can read and listen to things. Couldn't resist buying The Autobiographer's Handbook (published by 826) at Debbie's bookstore. Maybe it will help this project.

Bought ticket to Mexico for a 9-day retreat and a week of chill time after that (Oct 30-Nov 20), will land for Thanksgiving at my dad's. I'm loading up all the 'background' reading for the retreat onto my Kindle...

Giving a talk at the GBF Sunday. Egregiously unprepared.

Tuesday, September 4, 2012

Seattle (Chemo Day 12 of 21)

Olympic Mountains across Puget Sound
I was super tired yesterday, which landed within the five days of my 'immunity nadir'. Also could be because of a longer-than-usual walk yesterday*. On the pos. side, I am able to sleep a bit more. My friend Oscar has the most comfy guest futon imaginable. What's his secret?

I've gotten together with a few people here: Melissa at the arboretum and Cafe Flora, Kerstin for Thai food in Wallingford and then sunset watching at Shilshole Bay. Will see Lynne D. later today, who I haven't seen in around 15 years, and then's been really sunny and mild, perfect weather. Oscar and Debbie have a case of the most delightfully ripe peaches.

Melissa told me about some studies done in Japan on 'Forest bathing': men who took two-hour walks in a forest had a 50-percent spike in levels of natural killer cells. Another study found an increase in white blood cells that lasted a week in women exposed to phytoncides in forest air. (Read more about it in The New York Times.) So there is more motivation, other than how I feel, to get out of the city fairly often.

Chatting about this blog/book project with Oscar's partner, Debbie, who has a used bookstore here in Seattle, I realized making these words into a book isn't as straightforward, necessarily, as I thought. Are the updates interesting to anyone who doesn't know me? I don't think they necessarily are. And if not, how do I broaden out the appeal? There's a lot of material here. What is of interest and useful to the average...cancer patient? I don't quite know how to shape it. I need to do some research, I need an angle. I don't know much of anything about publishing. I need for it to have a good design and layout, too. I'd like to start blocking out chunks of time to work on it.

* Yesterday I logged 12,048 steps, which might be why I was so tired (around three miles.) Jane says the goal is at least 4,000 - don't recollect if that was only a starting goal. I've been doing between 4,000-10,000 per day since I got the pedometer, around three weeks ago.

Monday, September 3, 2012

From MSNBC Health

"Getting diagnosed with breast cancer is bad enough. But getting dumped by the guy you're seeing right afterwards is sort of like finding a piece of spoiled lettuce on your crap sandwich." 
Cancer kiss-off: Getting dumped after diagnosis by Diane Mapes, friend of Debbie Sarow, partner of my friend Oscar and owner of Mercer Street Books in Seattle

Sunday, September 2, 2012

The reason you have to face death

Portland - a survivalist supply store
next to an excellent Lebanese restaurant.
Also a 'Historic District' street sign
The reason you have to face death is that the only alternative is to live locked down by fear.

If you have cancer and you're fighting it, and you're thinking, I just can't die. I'm not going to die. Dying is not an option, NO! Then you have to live in fear of something you cannot control. You have to hide. You have to pretend that what is real is unreal. You have to act like you have a choice, that choosing life is an absolute choice. It's true that we can choose life, but that choice is simply an openness.

Cancer is not only part of life, cancer is its own life. A friend wrote to me recently:
I'm taking a therapeutic yoga training and am hearing all sorts of wonderful and miraculous healing stories, in addition to practicing the tools. I heard one today that reminded me of you when you talked about 'not wanting to fight your body' -- an older woman with cancer had a little talk with her cancer on a regular basis. She told it that she had no problem coexisting with it, but it was simply too big, and if it took over and she died, then it would die, too, and that wouldn't help anyone. So she regularly asked to shrink, and you know the punch line! She's alive and well years later, with no chemo, just regular check ups to see that tumors are staying very small!
Sculpture in Bellevue
I like this approach. (It's also true that her talks with cancer did not necessarily cause her recovery.)

Life and death can't be denied or affirmed separately.

So if life is OK, death is OK...Not for someone else, for oneself. Of course I'm glad my friends and family do not want me to die! But none of us has a choice either. It's life's choice. We can influence life. It's all about the difference between control and influence. I constantly mistake one for the other.

And trace it all, or much of it, back to not wanting to die. Social death. Losing everything, wanting to hold on. Everything we want: love, power, agency, prestige, talent, money, stability or excitement. Symbols we use to control life...

Why shouldn't everything that is horrible also be interesting?

I'm in Seattle now, actually Bellevue, Washington state. I wasn't so bad driving here (about 15 hours) but of course I can't sleep. 1:30am. My feet are much more numb than last time..up to maybe around 40% from 10 or 20%. I've almost fallen down two different sets of stairs, my own and the BART stairs. I'm a bit worried about what's going to happen as this increases with my next two treatments.

Across the street from Misha's, I saw two little mice lying on their sides on a piece of paper on the pavement. How'd they get on the paper?* One of them was dead, the other was on the way. When I took this photograph, the live one convulsed more. I thought about moving this paper with these poor mice on it so they could die or be dead somewhere better than the curb, but it seemed that might disturb them more so I left them. So I thought, in spite of what I wrote above, death is awful. At least from the outside. I suppose from the point of view of the dead, being covered for example with blood or shit or lying on a curb is of no concern. The time for concern about dignity or appearance is over.
Because of the sores in his mouth,
the great poet struggles with a dumpling.
His work has enlarged the world
but the world is about to stop including him.
He is the tower the world runs out of.
(Dean Young, "Elegy on Toy Piano")

*The piece of paper with the mice said 'Catchmaster' on it. I looked it up and it said, "Manufacturers of adhesive pest control products."

Saturday, September 1, 2012

"Hairless" by Jo Shapcott

Can the bald lie? The nature of the skin says not:
it's newborn-pale, erection-tender stuff,
every thought visible,—pure knowledge,
mind in action—shining through the skull.
I saw one, a woman, hairless absolute, cleaning.
She mopped the green floor, dusted bookshelves,
all cloth and concentration, Queen of the moon.
You can tell, with the bald, that the air
speaks to them differently, touches their heads
with exquisite expression. As she danced
her laundry dance with the motes, everything
she ever knew skittered under her scalp.
It was clear just from the texture of her head,
she was about to raise her arms to the sky;
I covered my ears as she prepared to sing, roar,
to let the big win resonate in the little room.

Sent by Dhammagita...
Here's the poem read by the poet.