Monday, July 30, 2012

Why don't visitors believe in microclimates?

This is one.
Photo by SF Chronicle/Frederic Larson
A few days ago at a movie theater in Daly City - cool & socked in by fog - I told my nephew that a few miles south there would be sun, and at Julie's about 20 miles away, it'd be 20 degrees (F) warmer. He was skeptical, until we were sitting by the pool...

There are also microclimates within SF, because of the fog coming off the ocean. Apparently it's pressure from the Central Valley (where I am now) that draws the fog inland. From the Mission district where I live, you can see Twin Peaks, the highest hill in the city, where the fog often stays: fingers of fog crawling over the hills, or a big fog bank with the top of a radio tower sticking out of it. So our neighborhood tends to be on the warmer side, and sunny. Sometimes the wind on certain streets is very cold, but according to my friend in New Hampshire, people in San Francisco are not permitted to complain about the weather, so nevermind.  

My niece Paris in the fog at Twin Peaks
Looking up the weather here is usually not very useful, unless you're in the same neighborhood they're measuring the temperature, which you usually aren't. In foggy neighborhoods it's around 10 degrees colder. You often see tourists in shorts and t-shirts braving the foggy gale that regularly blows across the Golden Gate Bridge. The towns a couple of miles south of SF also get a lot of a fog. Anyway. Cancer. 

I am having a good time in Fresno. I was extremely tired Saturday so we didn't do much, or I didn't anyway. Laura has a lot of beads which provides hours of earring-making entertainment. On Sunday Po and Cull headed back to the OC. It was especially sad when Kathy left, might not see her again until next summer - 10 months.

Lunch at Max's bistro, sympathetic scarves
Coincidentally, my mom grew up in Fresno and I have a bunch of cousins there, two of which we visited yesterday. My aunt Jeannie's sons Terry and Johnny, and Terry's wife. I probably hadn't seen Johnny in 30 years.

Entertainment log since yesterday:
  • Olympic opening ceremonies. (As a friend said to me in an email: Did you think the opening ceremony was a messy but sometimes creative and occasionally amusing bit of self-referential and often incomprehensible-to-anyone-but-a-Brit money-burning exercise??)(Actually I liked it though all those things are true!)
  • Ghost Story (Kinear and Gervais)
  • Wristcutters: A Love Story (excellent, based on a short story by the excellent Etgar Keret)
  • It's Complicated (Alec Baldwin and Meryl Streep, crap)
  • Run the Wild Fields (crap)
  • Cat's Eye (early Stephen King, complete crap but I was into watching it)
  • Finished Kitchen Table Wisdom which Sara gave me. 
  • Started The 36-Hour Day which is a helpful book about Alzheimer's/the direction my mom is going. It is rather frightening.
  • Coming up from the library: Mindfulness-based cancer recovery by Linda Carlson and The Long Flood by Margaret Atwood.

Saturday, July 28, 2012

Tripping & nose hairs

Jewish museum
I've had a runny nose for some time now & was wondering if I have a cold, though it didn't seem like it. So the big news is that this happens because, apparently, I don't have any nose hair. Revelation? 

I'm in Fresno for the weekend with my three sisters (in the sizzling Central Valley of California, three or so hours' drive from San Francisco.) Can't sleep. Laura can't sleep either. She's scratching one of those more involved lottery tickets with a quarter. And we talked about my mom who has Alzheimer's; it's terrible. Nine milligrams of melatonin later, slumber....

Earlier we watched the biopic Temple Grandin, then part of her TED talk. She talked about 'seeing in pictures' and how to a cow, a man on a horse and a man standing are two different things...I was pondering how essentially what she did is revolutionize cow slaughtering. I think if I went to a feedlot, redesigning it would be about the last thing on my mind...her work has relieved a great deal of suffering, though I guess it didn't relieve death. 

From Wish Tree by Yoko Ono
A couple of nights ago Cull & I watched Tin Men (with Danny Devito and Richard Dreyfuss, who looked a little like Paul Newman.) I liked it. We also saw the first five minutes of Romance & Cigarettes, Fools Rush In, and Tea with Mussolini. They were from the library, Fools was the worse. Too bad, 'cause Matthew Perry can be very funny.

Did I say anything about my talk at the Center? It was intense for me, but I did enjoy it and will upload it, hopefully along with some other talks, to (At the mo, having some technical issues.)

Not an Apple advertisement...
Photo by Kathy Cullen
I've been tripping a lot lately. Not in the usual sense of the word (when I use it) of strange or interesting. In the cancer pilates class yesterday, which was great, we did a few balancing type exercises. Generally I have good balance. Then getting up to go to the bathroom I tripped and almost fell over. I can only guess it's from the numb feet. I'll tell Dr. T. about it on Weds and maybe he will reduce my chemo dosage. 

I'm getting more tired. It's not exactly sleepy, and it's a bit wired at the same time. It causes craving for coffee and sweets (but not too bad.)

I'm getting used to the hair situation. Laura said to me yesterday that I am beautiful and it doesn't matter what my scalp has on it, or something like that. It was nice.

I'm not quite done with this post, but my sisters and I are sitting around the tube talking (loudly) upon various topics, watching the Olympics, and doing a vocabulary test from the internet, so going to have to wrap it up.

Wish Tree II

Friday, July 27, 2012

At the Cindy Sherman exhibit

Without benefit of makeup, Photoshop, and scene... 

Untitled 91
Untitled 92

Untitled 93

Untitled 94

Tuesday, July 24, 2012

Side Effects

Chemotherapy is supposed to make a person skinny. In our minds.

In the minds of medical people, that's the last thing it's supposed to do. The skinnier chemotherapy makes you, the more likely you are to die, because it's predictive that you cannot tolerate the treatment. Which is maybe why we associate chemo with skeletal people and death.

Rainbow chard
Photo by Paris Cullen
People are often surprised that I can eat. Kathy referred to me as a gourmet cook this morning, because I was eating eggs with chard and manchego (Spanish cheese), and a pancake (made from an organic mix) with fresh currant sauce. And last night I made up a recipe for wontons: minced water chestnuts, garlic, vegetarian sausage, and oyster mushrooms. (Although using our shitty teflon pan wrecked some of them.) Anyway, I like cooking when I have the time and energy, and stuff on hand. I often do not use a recipe which makes it a bit hit-and-miss. 

The other day someone grimly commented that a lentil soup I had made looked "healthy." I've noticed that people who use that designation seem to be in some way unfamiliar with vegetables...or at least not on speaking terms. It kind of feels like they're insulting the food you made, like a fashion designer calling a pair of shoes "comfortable." It's strange to me.

Anyway so far my side effects do not include much in the way of digestive problems. Here they are, so far:
  • For five days after chemo -  extremely high-strung, jet-laggy drugged feeling
  • Intense fatigue, although not as often/much as I expected. Have not noticed a pattern of any kind other than when I do a lot in one day, feel very tired all day the next. A moderate amount of exercise makes me feel less tired. BTW I have an appointment with Jane for an "Exercise Counseling Session" on Tuesday. 
  • Numb toes and sometimes, fingers (peripheral neuropathy). Keeping my feet warm, movement, and moxa help. 
  • Joint pain, fairly minor.
  • Diarrhea or constipation, it is often one or the other. Not too bad.
  • Most of the hair on my head and body falling out (alopecia).*
  • Inability to fall asleep at night for many hours. I've tried things like melatonin and valerian with mixed success. So far the most reliable is Ativan (generic: lorazepam). 
  • Extremely intense spaciness. I think this comes in off and on for a few days about a week after the chemo, not really sure. 
  • There is also always the threat of infection, white blood cell count (AKA neutrofils) getting too low, but this has not happened. 
After chemo next week I will get my mid-way PET scan to see what's what with the lung nodules...

* P.S. The word alopecia comes from the Greek for "fox mange."

Talk tomorrow evening

Mmm, Emmy's pickles
photo by Paris Cullen
I'm giving a talk Wednesday night at the Center:

Jul 25 and Aug 1
"Stage 4b: Cancer, Love and Death." Suvarnaprabha offers some reflections on having been diagnosed with metastatic cancer in January. 

The quantity of notes I use will be an unprecedented low.

If it gets recorded (and if like it) I will post it later, along with my talking points.

Monday, July 23, 2012

What is a Nadir?

Nadir basically means low point...When discussing chemotherapy side effects often you will hear the word...mainly in reference to the blood counts, particularly white blood cell count and platelet count.


Saturday, July 21, 2012

When is my zenith?

Saudi Lucas McCain
It's really hot today. Ninety-six down at Julie's (not as hot here.)

Here's a new manual about exercise for people with cancer produced by UCSF. It has a table (page 13) that shows how much exercise to get based on your blood counts. I got the link from the UCSF pilates teacher's website, Sunflower Wellness. I'm hoping to get a scholarship with them so they can help me with exercise during chemo.

Tomorrow is supposed to be my nadir. When is my zenith?

Cull and I went to a Writing for Wellness workshop in Berkeley, or maybe it was Oakland, at the Women's Cancer Resource Center. It was really fun (though the traffic coming back reminded me why driving across a bridge always sounds so far.)

Here is what I wrote (unedited) in answer to the prompt, "Waking up tomorrow with my ideal body." I had a lot of fun writing it.
My ideal body has hair in all the right places, mostly on my knees.

The people who come to the Mission on weekends to party, I become one of them, I braid my knee hair into trendy patterns over my high-heeled patent leather boots. It's beyond glamorous.

I was at the table next to Channing Tatum – he's just a regular guy. He does yoga for two hours a day. I don't need to do yoga. My hips are so flexible I could give birth to conjoined twins today, no problem. Everyone wants to know me. Oprah feels insecure.

Because my hips are very flexible. My knee hair is unusual. I'm bald by choice. I was caught on camera scoffing at eyebrow pencil, which Mick Jagger's daughter copied and created a line of non-eyebrow pencils.

50 is the new 15. Justin Bieber dyed his hair gray.

My abdomen looks like a 6-pack of watermelons, the old fashioned kind, with seeds, so sweet, so wet, protected from this harsh cultural desert by a wall of rind. 


At the Mac store
Things I'm still reading or newly reading or otherwise looking at:
  • Healing into Life & Death
  • Intuitive Awareness, an online book by Ajahn Sumedho.
  • Finished the girls, really enjoyed.
  • Saw Dolores Claiborne tonight, liked it. Other Stephen King favorites: Carrie, Thinner, Misery, The Dead Zone.
  • Just arrived: Kitchen Table Wisdom by Rachel Naomi Remen M.D., looks good.
Many activities today including a very friendly pilates class at UCSF.

Would like to submit some writing to The Intima: A Journal of Narrative Medicine. Deadline is August 1, doubt I will manage it.

Friday, July 20, 2012

My Time

By Leonard Cohen

My time is running out
and still
I have not sung
the true song
the great song

I admit
that I seem
to have lost my courage

a glance at the mirror
a glimpse into my heart
makes me want
to shut up forever

so why do you lean me here
Lord of my life
lean me at this table
in the middle of the night
how to be beautiful

Thursday, July 19, 2012

The 18-week marinade

Just after acupuncture today,
I barely recognize myself...
Chuck Connors in The Rifleman? 
On Friday morning when I asked David if it was time to start the chemo, he replied that I needed to marinate a little more first. And the marination has continued. Have felt so very drugged...and now coming down, way down. Today I am far inside myself, dreamy. I am seeing people through a telescope.  

I was reflecting about how my Buddhist practice has changed. Now it seems to be all about noticing and reflecting on my mental states, talking with people, and writing. I used to do more than that. I used to sit every day, and I used to map out the future. There was always, there always seemed to be, somewhere, a future, or at least an imagined future perfuming the great matter of life and death... 

BBQ anyone?
But then any degree of certainty and the future disappeared. And I thought for a time that it was possible to be neutral about that, to only not know. I see now that I was still filling in blanks, to some degree - mostly with death.

Now I am assuming that the cancer in my lungs - or must I use the cursed word nodules? - will be crushed by the cytotoxic tsunami in which my body now marinates...and if it doesn't, angsting about that now will in no way prepare me for it. Sure, there's not knowing: I most certainly do not know. But there is always some sense of the outcome, it's there, it effects things, I don't even have to think about it. I don't think a positive attitude necessarily makes positive things happen, it just makes everything feel like less of a thorn in one's flesh.

Don't know if I can give the talk next week. Feels like getting into a car accident and trying to give a talk as you're flying through the windshield...Danamaya suggested just doing what I can, that that is enough. She is probably right.

P.S. My eyebrows hurt today. Which I'm assuming means they're about to fall out.

Tuesday, July 17, 2012

Chemical cocktail

Seals chatting in under the Santa Cruz pier
My body seems to be raging with chemicals. Mostly of the pick-me-up variety, but then there's the occasional wah-wah, jet-laggy spaciness. And the odd aches and pains, and numb toes. And it takes me a long, long time to go to sleep, unless I take Ativan, which I have been every night (except for the night of my last blog post when I was a Julie's and stayed awake in bed until 5am!) Still, I would rather be energetic than tired.

Had a great time yesterday starting to catch up with my old friend Sara who I haven't seen in about 10 years. She's just finished nursing school. I noticed that I told her how I really trusted my doctors, and also how my doctor has wanted to give me some serious medications twice, when upon further inquiry it seemed that I didn't really need either of them. After my first treatment, he wanted to put me on Pamodrinate to prevent fractures, but when I asked if he thought I was particularly vulnerable to fractures, he said no. Then after the second treatment/chemo started, the Neupogen shots to combat neutropenia, even though my blood counts have been very high, and the risk is only 20%. Sara mentioned that the medical profession just wants to give you loads of DRUGS, which certainly seems to be true. 

It was great to catch up with Sara. We used to work at a little software company in Berkeley, and both became technical writers for a while...and got married a few times...still much more catching up to do.

I'm giving a talk next Weds at the Center about my experience of having cancer. It's so personal I don't quite know what to say. Will work on it for the few days before Cull, Paris, and Torrey arrive on Thursday...thinking of themes: Preciousness of life, impermanence, anxiety, and love...

Saturday, July 14, 2012

Chemo dates and searching this blog

Note that to search for something on this blog, you can use the Blogger toolbar at the top left of the page. A more powerul search would be through google, but this can only be used, for some reason, for blogs that are generally findable on google, which this one isn't. If you don't understand that part, no worries, just use the Blogger toolbar and hope for the best if you're looking for something in particular...

Friday morning chemo dates are as follows. Times aren't set but so far they have been starting at 9:15am and ending by about 3pm, then I go to Misha's and the day is over at about 5...

June 22
August 3
August 24
Oct 5

Too Long

David and I
Today included driving hither and thither (thither?) with Dawn and then Jules and then on my own, six hours off and on with David the nurse, Dawn, Jules, Tong, Susan the social worker, and David Attenborough, in the chemo room, being infused with Pepcid (famotidine), dexamethasone, and then three hours of highly histaminic chemicals extracted with alcohol from the bark of a Pacific Yew tree...chatted with Misha, acupuncture, moxa, short foot massage, dined at Miss Saigon (Misha was unenthused about Tu Lan, pronounced "Too long", the old tiny divey Vietnamese place on 6th), packed for spending the night at Jules' (which took an hour and a half, more on that later), and, once in San Carlos, watched the riveting last two episodes of the current season of Nurse Jackie. It's now late and I know it will take me hours to write this, but I also know I couldn't sleep right now anyway. I have around 15 emails I haven't answered, too.

Plus these clowns!
I was pondering this blog today and realized that I write certain things here for certain people, but don't actually mention that, even in a very general way. I may even be thinking of one person when I write...but then someone else usually asks if I was writing about/to them! Like a very close friend - after reading Things to do for your cancer patient pals -  asking me if I don't ask her for help when I need it - or something like that. This happens in person, too. Sometimes I can't anticipate what someone will take personally, I assume that everyone to whom it doesn't apply will know that. Then in hindsight, it seems obvious that they wouldn't. Because things that are obvious to me could well be obvious only to me...this isn't quite coming out right...

And one more. David Attenborough was
talking about The Life of Birds.
My point is that sometimes I have zero emotional intelligence. I write very directly, and regularly do not anticipate any subtlety in how it may be received. I do this not because I want to be harsh, or even that I feel harsh, but because I am completely unaware that it may be taken as a critique...So my point is: when you read my posts, please imagine I am saying the words with a kindly voice. If I make a suggestion, I am sincerely trying to be helpful, and if it is not helpful, please feel free to ignore it, or tell me how it effects you, or read it again hearing it in a kindly voice and ask yourself if it really applies to you.  There is no need to be nervous about saying the wrong thing or whatever to me. I love you for many reasons including that you are reading this blog. I wish I were able to always communicate that, such that there could never be any doubt.  

And now more content from today....

Chemo: David let me know a few things: I'm only supposed to take the glutamine for first four days after getting chemo. The steroid (dexamethasone) preceding the chemo infusion and that I also take in pill form for several days afterward, are what are making me hungry and manic. Also, insomnia. I often take Ativan (lorazepam) at night, which was originally for anxiety, but like so many of these drugs, other uses were discovered. Sometimes I take melatonin instead. Sometimes I'm so tired during the day but full of a kind of nervous energy, and I had no idea why...

Misc: I was thinking it would possibly be more digestible here if I grouped certain topics rather than mashing together the misc. But that level of editing seems too difficult right now. 

Misc: As you may have gathered, the clumps of hair falling off my head and making my scalp all patchy and cancer patient-y has been disturbing. Apparently I have become very attached to seeming healthy, even though technically I am not. After eight months of normalcy (not a real word), my head suddenly became a shorn radio blasting to everyone that I have cancer, that I am possibly even a modern grim reaper. It freaks me out, and my scalp is also starting to hurt. I think shaving it all off will help. Then I can just carry around a picture of the Pope and tear it up in an emergency.

Misc: David said I should check with the doctor that melatonin is OK to take. Misha said I should tell Tavakoli that all the interactions between the herbs and my chemo have been meticulously checked. She attributes my excellent blood counts to the herbs.

A common Mission district sculpture
Misc: In order to spend the night at Julie's I had to sort out and pack masses of things. Head coverings including for sun. Clothes for a 20 degree heat increase, laptop and book of notes for blog. (I actually find it kind of painful being separated from this blog.) Erg. keyboard (F key seems to have mostly recovered), glasses. And I forgot the rather crucial Ativan and psyllium husk. Camera battery charger. Book. Flip flops. Hiking shoes, but I think I forgot those too. Water bottle. Eyebrow pencil. Calendar. Snail mail. Julie offered to help me gather my things, I really should have taken her up on it. 

Factoid: The widely-used chemotherapy drug Taxol was discovered on my birthday! Exactly one year before the day I was born: August 21, 1962.

I got a sweet card from Tong today in the mail that made me cry.

Thursday, July 12, 2012

I gave away ice cream +

In the Kaiser elevator
Po bought some Ben & Jerry's Cherry Garcia while she was here and didn't get a chance to eat it. I gave it away.

I think part of the reason I have such active bowels is all the Chinese herbs I am taking. All I can say about that is, Crap I've got cancer!

The F key on my ergonomic keyboard suddenly doesn't work.

I sent a few excerpts from this - dammit you never realize how many F's you want to type until you can't anymore - blog to a contact at Wisdom publications. He didn't think it was salable for Wisdom, but called what I sent "striking and powerful". So that's something. I'll try Windhorse Publications.

I'm reading a novel about conjoined (previously known as 'Siamese') twins called the girls. It's interesting. 

Had two crucial naps today including one during my pre-chemo Misha session. Dawn's taking me to chemo tomorrow, then Jules will take over. 

My new wig is very oxy, by which I mean foxy. 

Things to do for your cancer patient pals

I kind of wish I had gotten the red one too,
but I guess I'll be sensible and first see
if I end up wearing this one after today.
I'm still into the scarves and hats, too.
Wig is good for San Francisco weather. 
I've heard a lot that friends and family of people with cancer can get frustrated because they want to help but don't know what to do. I was thinking of making a list of ideas, not so much about me...But I thought a list based on my experience might be useful.

BTW, if someone says to me, Let me know if you need any help, they will never hear from me. Because I don't know what they're offering, or if they're just being polite...and it's difficult to ask for help anyway.

I am too tired now to write this list. So here's a poem you may enjoy in the mean time:

How To Behave With The Ill, by Julia Darling

Approach us assertively, try not to
cringe or sidle, it makes us fearful.
Rather walk straight up and smile.
Do not touch us unless invited,
particularly don't squeeze upper arms,
or try to hold our hands. Keep your head erect.
Don't bend down, or lower your voice.
Speak evenly. Don't say
'How are you?' in an underlined voice.
Don't say, I heard that you were very ill.
This makes the poorly paranoid.
Be direct, say 'How's your cancer?'
Try not to say how well we look.
compared to when you met in Safeway's.
Please don't cry, or get emotional,
and say how dreadful it all is.
Also (and this is hard I know)
try not to ignore the ill, or to scurry
past, muttering about a bus, the bank.
Remember that this day might be your last
and that it is a miracle that any of us
stands up, breathes, behaves at all. 

Prosthetic hair photo diary

The Buddha looks over
the hats and scarves

Photos by hair consultant Dawn Pavli,
except this one
and the one with the Buddha

Wednesday, July 11, 2012

Who's the fat old bald the mirror?

Note that these photos are more flattering
than the real situation
I hasten to point out that of course there is nothing wrong at all with old men. The problem is that I didn't think I was one. Until today.

Shantinayaka kindly buzzed off most of my hair this afternoon. It was starting to look weird and seeing bits of my hair everywhere - for example, on my computer screen right now...or in my food - was driving me crazy. When I buzzed my hair 15 or so years ago, you could not see my scalp. Now I have around 20% density. It will be easier to take perhaps when it is all gone, which I imagine will be soon.

I have an appointment through the American Cancer Society with a place in West Portal to do a wig fitting tomorrow morning. Or, as it is also known in my current circles, a hair prosthesis.

I thought I might enjoy being bald. There's still plenty of time for that...

Anyway...earlier today: blood tests, Dr. Tavakoli, and restorative movement/Feldenkrais. 

The nice thing about meeting Dr. T is that chemotherapy becomes run-of-the-mill. It's totally normal to him, and he's funny. You deal with the symptoms and make it work. Here are my notes from the meeting:

Suburban babes from the 
American Cancer Society catalog
Neuropathy - Chemo attacking digestive system and hair follicles and bone marrow is well known. It can also attack the nerve sheath. Told him it had gotten better, just slight numbness still in my toes, not in my fingers anymore. If it gets worse there is a drug, of course, Neurontin (Gabapentin) which doesn't really have side effects other than making some people drowsy. If neuropathy gets worse next round, will decrease chemo by 10%.

Increased appetite - unlike what you think is going to happen on chemo, I am ravenous pretty much all the time. He said it's because of the steroids (note that dexamethazone is a glucocorticosteroid, not an anabolic steroid)* in the chemo. I'm also taking dexamethazone in pill form for several days following the chemo. I understood it's main use was anti-nausea, but if you look it up on wikipedia you will see a lot more going on. I've gained at least 5 lbs in 3 weeks, and that's with getting a fair amount of exercise. If I stop the, it's too horrible to ponder.

Herbs, immunity - He suggested not taking my herbs the first week of chemo, concerned about anti-oxidants. Will talk to Misha about it. He said the lowest immunity (which doesn't necessarily correspond to feeling bad) comes on Days 10-14. The sickness can be caused by my own bacteria getting into blood stream. In terms of how I feel, Days 15-19, so far, I seem to feel the worst and be the most spacey. Although it still varies throughout the day.

I could swear they tell me something different about the fever thing every time. He said a fever of 101 means go to ER immediately, will need IV antibiotics. If over 100.4, check again in 15 minutes...

We talked briefly about my emergency room visit. I mentioned that Tong ate the same eggs and didn't get sick. He did not think that meant I was more immune compromised, could be just that the bites I took had bacteria in them and his did not.

Blood counts came back and look good. For example, normal range for neutrophils is 41-81%. Mine is 62%. White blood cell count and red blood cell count are on the lower side but still in normal range. I wish I could see what they would be if I weren't taking all these bloody pills!

The Feldenkrais was great. I'll write more about that later. Want to go back to the arty support group, but don't have the energy to hang around for 2 hours after the Feldenkrais class.

* More info about the different steroid types on

Bye kitty

Tuesday, July 10, 2012

Continuing hair trauma, etc.

You can't tell yet that my hair is falling out. I mean, it still looks like I have a full head of hair. But it's falling out into my eyes all day. I have lots of very fine hair. At some point it's got to run out. Fact is that I am dreading my imminent and mandatory bald cancer patient costume. And I will get used to it. I've had a good run for eight months with a full head of hair!

 I've got the house to myself for a few days, which has been rare in the 18 years I've lived here, but is still rare now that people are staying with me most of the time! I enjoy both.

I will miss kitty and her advanced yoga poses
Rochelle brought me some beautiful scarves, and Helen brought over some food yesterday, and MJ and Viradhamma are going to do some errands for me. Yay! Unfortunately the kitty is going away soon (someone's moving in who's allergic to cats.) There's this place around the corner called PAWS that helps people who are really ill take care of their animals. But do they loan out animals? 

Had a nice chat today with Savanna in New York. Did my community service for Nancy's List (looking for potential funders at the Foundation Center) and while I was there got an email from Nancy saying she didn't really need me to look for funders after all! I did find a few places that might give me a writing grant. It was fun doing something different. I'm also thinking of appealing my Social Security which starts in August (that is, getting the lawyer to help me get the back pay going back to January.)

Starting to feel very jetlaggy, spacey. I think my version of the 21-day cycle is feeling ass-kicked toward the end. Today is Day 19. Must-have afternoon nap. I made a complicated schedule today of all my changing pills etc I take during the 21 days. In this phase of 6 days, I take 30 per day. I'm keeping up the walking every day... 

The wifi in our building has been down since last night so I am crashing Dawn and Prasadacitta's wifi at the mo...not done but gotta go home...

Sunday, July 8, 2012

The Emotion of Statistics

On last week there was a Dutch woman, 37, who started with the same rare cancer as myself - primary vaginal adenocarcinoma, sounded like stage 4b. Two years later she has lung mets and cancer back in the vagina and lymph nodes. It will probably kill her, she didn't say if there was an estimate as to when. I felt a lot of compassion for her. She was pregnant when she was diagnosed and now has a two year old daughter. Hers is the closest to my situation I've come across. Assuming they couldn't do radiation right away because of her pregnancy. 

I haven't had anyone tell me I am going to live, or that I am going to die. Or that the treatment will work, or not work. Or any odds about anything. As I have said before, estimates based on studies are to help doctors make decisions about treatment for individual patients. They are not relevant to prognosis for a particular patient. Denise, who had breast cancer twice, said the other day that the prediction for her was 98% success rate. She ended up in the 2%.

But we rely on these numbers. On an almost instinctual level, high numbers (suggesting positive outcome) are relaxing. Is it more helpful to focus on the positive, to tell oneself that one will be part of the the statistic that lives/thrives/heals? I suppose it depends on how one does it. "Positive thinking" can be avoidant, and agressive. I don't try to think positively, or negatively. It's more that blanks automatically get filled in.

Alice has questions
I realize now what I think, that the current chemo will take care of the cancer in my lungs, and I'll be done with it all after that. There is virtually no basis for this view. True, I responded well to treatment last time. I take good care of myself. But the outcome is totally unknown. I don't even have any odds to trick myself with. I think it would be harder to do this if there were numbers: 30% chance of this, 70% chance of that. I fill in the blanks in my own way, mostly not consciously. And I fill them in in the way I do probably because on some level I still don't think of myself as someone who is a candidate for cancer. This whole ordeal still has got to be just a kind of blip on the screen of my life...

My thoughts about it have become more subtle in the...eight months since my diagnosis. At first and for some time, it was: I'm either going to live or I'm going to die. I was not aware of other possibilities. The subsequent dichotomy: if I live, I'm either going to struggle with cancer/treatment my whole life, or not. After treatment was over and I wasn't recovering quickly: Will I live without cancer, but be disabled by the treatment? Then most recently, I had a great deal of fear about what chemotherapy, not cancer, would do to my body. There's a lot of fear to deal with, all to do with future possibilities.

Denise said she takes time very day to acknowledge fear, just let it happen. I think she said in the shower after swimming, she lets it all happen. Then she puts it in an imaginary box until next time. If fear comes up during the day, she  tells herself to wait for the time to open the box. A creative way to deal with fear. All I do really is just try to be aware of thoughts, particularly of speculation. What if this happens? What if that happens? Slowly I see myself creating scenarios, see the suffering in this, and them go.

I'm getting better at not knowing and the freedom that brings. There's always a new thing not to know.
...Then what I am afraid of comes.
I live for a while in its sight.
What I fear in it leaves it,
and the fear of it leaves me.
It sings, and I hear its song.
-Wendell Berry

Daily Grind

Driving back from Julie's,
into the fog
Here's what I try to regularly do/take. Almost all of it is advised by Misha though vitamin B6 and glutamine for neuropathy, and exercise, are also recommended by Kaiser.
  • 500mg vitamin D
  • 1000mg calcium; 500mg magnesium
  • Krill (fish) oil
  • B complex with 100mg B6
  • Marrow Plus herbs - for blood counts - 9 per day, plus different herbs depending on where I am in the 21 day chemo cycle. (Day 1-10, 11-15, and 16-21 have different herb blends. I am now on Day 17.) 
  • Health Concerns brand herb pills for Days 16-21, though I haven't gotten them yet. I didn't think about it until it was too late to get them from Misha on Friday. Rx is 5 "Enhance" and 2 "Cordyceps PS" 3x/day for this phase. 
  • Glutamine to help with neuropathy - 1 TBSP in water 3x/day
  • Moxa (heat from burning herbs applied to acupuncture points)(helps with many things including digestion and neuropathy)
  • Also for neuropathy, keep my feet warm
  • Walk - minimum half an hour a day
  • Massage every few weeks
  • Yoga for super tight hips (should be every day)
  • Feldenkrais, pilates (just getting started with these things)
  • Cooking whole/organic foods, no or little added sugar
  • Support group every week or two
  • That's all I can think of
Po looks like she's praying
but I think she's driving
I'm very focused on myself, which I sort of have to be. I'm also thinking about using my spare energy to think of others more. I told Nancy from Nancy's List (which seems like a really great org that among other things regularly offers free sails around the bay to people with cancer) that I would help with looking for funding. Hopefully I will still have the energy next week to spend a few hours at the Foundation Center downtown.  

Though my hair has started falling out today in great swathes, and I am very tired (of course it's also 1:30am), I have felt remarkably well for the last week or so. Paulette was here doing a lot for me - laundry, cleaning, cooking, errands - it was awesome. I'm taking her to the airport in a few hours. 

After running my fingers
through my hair...
Monday I need to track down the new Chinese meds, probably have to go to Misha's. And Jeff may appear for another visit! 

Weds morning I do my blood tests and talk to Dr. T. Then Chemo #2 with Julie on Friday, the 13th... 

House will be empty for just a a day or two, just me and the kitty before Jeff arrives...  

Friday, July 6, 2012

My hair's falling out

"I touch you to
see that you are not
I took a walk up the hill with Dawn this morning and after my shower, I brushed my hair forward, and a bunch of hair fell out.

So far I have managed to avoid looking like a cancer patient, because I look healthy, and also because I am simply fatter than you expect a cancer patient to be.

But the sight of a bald woman - it pretty much screams "cancer patient". I shall have to get used to that. 

Went to a talk/workshop about mindfulness at Kaiser today. I really enjoyed it. I jotted down some notes in case I end up leading a retreat for people with cancer in September. 

Thursday, July 5, 2012

A good day to have cancer

Photo by Kathy Cullen
Mon Dieu, as the French say, what a great day I had! I ate like a cochon...and I felt great.

Spent the morning at Land's End walking around and catching up with my wonderful friend Lena who I haven't seen in a long time. Then a deluxe lunch at The Beach Chalet. I really splashed out, having iced tea and a decaf coffee. Not to mention the duxelles and mache. Can you imagine the debauchery?

The lady who teaches pilates for cancer patients at UCSF called me back - she was encouraging me to keep up the exercise. She said more and more research is showing that exercise makes a huge difference. (Come to think of it, not sure if the difference is in tolerance of the treatment, curing cancer, or both.)  In terms of how I feel, it makes a huge difference. It seems like the less I move, the less I can move. And the more I move, the more energy I have. To an extent.

Then we picked up Po, dropped Lena off downtown and headed for Misha's, where poor Jerome had to give another moxa tutorial, this time for Po (last one was for Kathy, but we both then forgot about it.) They want me to do it every's the same principle as the needles, but applying heat's like holding a cigar that smells vaguely of marijuana (but is mugwort) an inch or so away from the skin at certain points in my abdomen and feet. The heat feels great.

Then back home and bought some fruit at the farmer's market and got a wonderful statue of the Buddha in the mail from Anilashri. Po called the American Cancer Society for me - I'll be getting a wig appointment soon. She is watching me write this and thought I might want to mention that she mopped the kitchen floor, too.

I am astonished again today by kindness.

My foot today