Cancer Blog Phase 2

This blog chronicles the first phase of treatment, for Stage IV vaginal adenocarcinoma, from December, 2011.

The second phase, metastases, starting mid-June, 2012, is here:
Crap! I've Got Cancer. The Sequel. 

Actual Chemo

I'll write more detail in the next day or two. It was all right.

P.S. I changed some blog settings so it should be easier to post comments now.

Fear of Owls

Don’t let your throat tighten with fear.
Take sips of breath all day and night. 
Before death closes your mouth.
 -Rumi 

A few days ago my cousin posted a blurry but cool looking photo of an owl he had startled in his backyard one night. The posted responses, except mine, were all along the lines of "Scary!" which surprised and baffled me. Owls are beautiful! What does a human being have to fear from an owl? Nothing. What does an owl have to fear from a human being? Lots. Mike's explanation (of sorts) was that most city or suburban people fear animals, etc., in the country. And that country people fear cities...Anyway another friend told me about her son-in-law who had lung cancer. As he was dying, he would not speak of death, or allow anyone else to speak of it. Fear.

When Julie, Morgan, and I went to Tanzania, I noticed we all had different fears. Morgan was afraid of insects. Jules got very nervous flying. I dove underwater with my snorkel and panicked. Who can really understand someone else's fear? None of it, really, makes any sense.  Sure, some bugs can kill you, people die in plane crashes, and people certainly drown...but there is no activity you can do with a guarantee you'll live through it. It's all irrational and yet...it's real in the body, and must be paid attention to. I am grateful I've had to do this very little (until now.)

I am possibly more afraid than I have ever been in my life. I am afraid of the super toxic chemicals I am voluntarily taking intravenously on Friday. (Various people's anti-chemo sentiments add more confusion.) I'm afraid that this cancer situation won't end up being finite like I keep thinking it will be. 

Do I truly have anything to fear from chemo? Well. Maybe. Probably? I won't know how it is until I do it. As with cancer itself, there are a lot of totally different kinds of chemotherapy. The word is strongly evocative. An image perhaps of Meryl Streep, skeletal in a hospital bed. But overweight people have a cancer advantage, a little known fact. (Actually, not true at all except in the sense that we can lose weight without looking like a living skeleton...) So discomfort/pain and death are the possibilities. Death at this stage very unlikely. Worse things, things I can't even imagine now.  It's all just ideas right now. The reality is not known. It's the idea of an owl...or a rattlesnake.

A retreat is a great place to deal with fear, and everything else. The theme of this retreat was the Heart Sutra, a great love of mine whose subject is reality. What is. Fear. Mental projections. Perfect. Also terrible, because you feel more on retreat, when you pay attention. But that's also what allows it to change.

I led a ritual to Perfect Wisdom (Prajna-paramita) Wednesday night which I really enjoyed. Among many other things, people chose and read relevant teachings, including a flash mob style Rumi poem. Listening to the readings, the whole thing really, was healing for me. I felt my fear leave me...not really leave me, but relax the grip on my heart. Here is what I read (from Osho's commentary on the Heart Sutra)

...you think stones are food and you eat them; then you suffer, then you have a great stomachache. But if it is real food then you don't suffer, then you are satisfied. Suffering is created by ideas that don't go with reality; bliss is created by ideas which go with reality. Bliss is a coherence between you and the truth; suffering is a dichotomy, a division between you and the truth. When you are not moving with truth, you are in hell; when you are moving with truth, you are in heaven - that's all.  

I want to think of chemotherapy as an adventure. An adventure in how things are.

Chemo Appointment & Support Group

On a Pole in Westfield Mall

My new round of chemo starts a week from today: Friday, June 22, 8:45am. It will take 4 or 5 hours. I have to take Zyrtec (Cetirizine) an hour beforehand to reduce chances of an allergic reaction. Padmatara and I will leave the retreat early which is sad for me. Viveka was encouraging us to come back. (The retreat ends Sunday.) I don't know. I'd like to come back for the finish of the retreat, but Jikoji is at least an hour's drive from a doctor...I'll go see Misha after the chemo...

Did many things (by my standards) today. Drove out to the Excelsior with Padmatara to go for a walk in McLaren Park with Karen Z. Then met Bill at Que Tal, and went to the monthly Kaiser support group which I haven't been to in a few months. Saw Tong briefly there. Then came back to Bartlett and met Viveka, then drove down to Julie's.

The support group was really good. Other than the emotional level of things, it's great to get advice and tips...from people who actually say useful things. Here are some highlights, or anyway what I remember:

• There were these really tasty-looking cookies. Shortbread with chocolate. I asked myself, This is San Francisco, don't these people know they shouldn't eat sugar? (I thought I might go mad with craving them, but I didn't.) I asked who in the group did not eat refined sugar, and almost everyone raised their hands, including the two social workers. And I noticed that no one had eaten the cookies. 

• 

  McLaren Park

  Two women told me about the Women's Resource Center and also UCSF where you get free wigs and they help you pick one and they style it for you, etc....I might check it out, though I can't imagine wearing a wig, I am so hot all the time. 
• A new book by Rebecca Katz who wrote The Cancer-Fighting Kitchen. The new one is One Bite At A Time.
• Chemotherapy with Carbo and Taxol: After you first get it, you're sort of drugged up so you feel OK. Then the crash of the white blood cells and you feel bad. Then the last week is sort of OK. So this seems to be the cycle. 
• Eileen, who I remembered liking from last time, is leaving the group soon to go to UCSF (hence the cookies). She has some kind of dire lymphoma and does a lot of traveling, said she likes traveling and wants to enjoy the time she has left. She suggested that one can plan travel especially during during the last week of chemo (though you may have to cancel it), especially if it's to Hawaii where there is a Kaiser. Several people had gone to Hawaii on vacation because Kaiser is there. 

Did I write this already? I'm starting to wonder about repeating myself here. I know that I have explained the 'incurable' bone thing more than once. I'm so aware today of how much the word chemotherapy packs of punch, just as a word. Will the reality hit as hard as the word suggests? I doubt it. Maybe I will check in on that later. 

Ordinarily I would edit this more. But I need to go to sleep. 

Cancer Cures + I Stopped Eating Sugar, Again

Whole grains, that's what I need
[Women's Building]

I've started drinking my fresh fruit/ organic whey protein shakes again - this morning with rasberries - which makes me feel better all day. I did have biscuits with my breakfast with the homies yesterday at the Pork Store (the name says it all) which are all refined flour... But I made hummus yesterday... working on it! 


I'm liking the online Cancer Survivor's Network. Though many of the stories are horrible, the people are very encouraging, and it is lived experience rather than data. Found this book on there this morning. The "Tips for Recovery" look good: Outsmart Your Cancer.

I do not believe anyone who claims they can cure cancer. I don't doubt that by doing unusual things - and against all odds - some people completely recover. But I think it is very difficult to identify the exact reason for the recovery. And even if it were possible to say exactly why, one person's solution isn't necessarily another's.

All the 'cures' I have read about rely exclusively on anecdotal evidence, but fail to mention, well, death. So all these miracle treatments with a 100% success rate for each of the hundreds of kinds of cancer have simply been crushed by the FDA? I might have confidence in alternatives if there were real studies, real data. Which reminds me of something Jack Donaghy says on 30 Rock: “There are many kinds of intelligence. Practical, emotional. And then there’s, uh, actual intelligence, which is what I’m talking about.” (I love that show!)

Anyway, knee-jerk reactions from the different poles of medicine seem to kick both ways. It's confusing to go to a healer who is against chemotherapy in some way. The acupuncturist I went to before my diagnosis seemed to think chemo is more likely to kill you than anything else. That's one thing that's so great about Misha Cohen. She really understands what Western doctors do for people with cancer and how to support that process while minimizing harm.

And some oncologists are not sensitive to whether they may be creating a situation in which the medicine creates more suffering than it alleviates. Alternative treatments are not going to leave you disabled...The idea of 'complementary' medicine seems more useful than 'alternative', in that you hopefully get the best of both worlds without totally relying entire on either.

Chemo Info

This morning I remembered that I had posted a question about Carbo and Taxol (the proposed chemotherapy drugs) on the Cancer Survivor's Network/Gynecological Cancers bulletin board. One woman replied that she had gotten brain damage from these drugs. Also some people wrote about intensely painful bones. And I looked up some stuff about SSDI. One thing was that people under 50 are rarely granted it. Overall, a depressing morning. I did call a disability lawyer & got an appointment. Too late for this round I guess, but if it gets denied, I may use her for an appeal. Susan Chen, the social worker at Geary Street, says most applications for SSDI are denied.

Lisa Kee, Padmatara, and Dawn came with me to meet Dr. Tavakoli today. It was great to have them there, and recording it was very helpful too. Here are some things we talked about:

First question was: Dr. Patel was emphatic about cancer in the bones being incurable. Why did it go away?

Gynecological cancers in the bone generally are not curable, unlike, for example, metastatic testicular cancer, which is very sensitive to chemo (90% survival rate.) Twenty-five percent of gynecological cancer patients (I think this means advanced stage) don't make it to five years, and that's often with continuous treatment. The cancer could still be in the bone, but it's not detectable now. With serial images every six months you would have more information.

Second question: Why is it important that I have 'vaginal cancer metastasized to the lungs' rather than 'lung cancer'?

Treatment is based on cancer of origin. Because of this, as before, there isn't great data about how well this chemo will work with vaginal adenocarcinoma. Have to just see how it goes. Carbo and Taxol are also used to treat lung and ovarian cancers.

Oncology waiting room

Chemotherapy will be every three weeks (last time was weekly.) After three cycles, at around 11 weeks, get a PET scan to see how it's going. If cancer is not responding, will need to change drugs. If after six cycles, or 18 weeks, the cancer is still there, might take a one month break and start on different drugs.

Side effects: First week is fatigue, might have nausea but shouldn't actually vomit. Can use percocet or marijuana. (Wow, someone finally mentioned marijuana!) About ten days out, immune system at its nadir, so important not to be around sick people. If you get a (neutropenic*) fever - 100.4 two hours apart, have to go to an emergency room.  Suggest doing infusion early in the week so that doctors will be around if something comes up. (Also, don't drink Kombocha tea, or live cultures. And don't take antioxidants during chemotherapy.) He said a road trip would be ok as long as you always know where the hospitals are, and you get out and walk every few hours to prevent blood clots. (Veins are a passive system apparently, they only work when your legs are moving...)

So, I've decided not to go to Montana. If something happened during my first round of the chemo, I would be far, far away from my doctors. I don't want to risk it. However, I will go to the retreat June 16-24. Chemo will follow, but I don't have the appointment yet.

As for thesecondopinion.org, I'm going to consult with the director, a medical oncologist. He will then decide if I would also benefit from waiting to see a full panel in July.

P.S. Turns out the cement graffiti outside our door featured on the left was written by none other than Lisa Kee!

*Neutropenia is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells (WBCs) produced in the bone marrow that ingest bacteria. [http://medical-dictionary.thefreedictionary.com/]

Healing & Choices

The wares at Ross Dress for Less

After a few weeks of feeling very happy and energetic, the energy seems to have gone away...

When I was thinking about jobs and things the other day, it occurred to me that my job now is to stay alive. Which means to take care of myself, which I haven't been putting as much energy into lately.

Had two healing sessions today. One was some restorative yoga with Dayamudra. She sets you up lying on the floor with various body parts propped up here and there for about 15 minutes. And over the time you get a very tangible feeling of certain body parts releasing tension. It felt great. The other was a session with Alan which is kind of hard to summarize. I think I will write about that in a separate post.

A merciful soul painting over graffiti on our street

Folks in the chapter this morning suggested bringing a recorder to the meeting with Dr. Tavakoli on Wednesday which is a good idea. Padmatara and possibly Julie and/or Lisa Kee will come with. Also need to talk to Dr. T. about Disability, and the Second Opinion folks, who I got this note from today. I have to choose an option...

• Our director has approved you to be seen in a tumor panel for a complete review, would likely be in July (7/20 or 7/27 depending on the schedule of the docs needed -we'd need specialist - gyn oncologist).
• He has also approved you for a phone consult with himself after you see your Medical Oncologist on Wednesday and get your first opinion/treatment plan to discuss your chemo options.

What to do? I wrote back asking what the advantage of a panel might be after chemo has already started...

My Mother Would Be a Falconress

by Robert Duncan
from poets.org

My mother would be a falconress,
And I, her gay falcon treading her wrist,
would fly to bring back
from the blue of the sky to her, bleeding, a prize,
where I dream in my little hood with many bells
jangling when I'd turn my head.

My mother would be a falconress,
and she sends me as far as her will goes.
She lets me ride to the end of her curb
where I fall back in anguish.
I dread that she will cast me away,
for I fall, I mis-take, I fail in her mission.

She would bring down the little birds.
And I would bring down the little birds.
When will she let me bring down the little birds,
pierced from their flight with their necks broken,
their heads like flowers limp from the stem?

I tread my mother's wrist and would draw blood.
Behind the little hood my eyes are hooded.
I have gone back into my hooded silence,
talking to myself and dropping off to sleep.

For she has muffled my dreams in the hood she has made me,
sewn round with bells, jangling when I move.
She rides with her little falcon upon her wrist.
She uses a barb that brings me to cower.
She sends me abroad to try my wings
and I come back to her. I would bring down
the little birds to her
I may not tear into, I must bring back perfectly.

I tear at her wrist with my beak to draw blood,
and her eye holds me, anguisht, terrifying.
She draws a limit to my flight.
Never beyond my sight, she says.
She trains me to fetch and to limit myself in fetching.
She rewards me with meat for my dinner.
But I must never eat what she sends me to bring her.

Yet it would have been beautiful, if she would have carried me,
always, in a little hood with the bells ringing,
at her wrist, and her riding
to the great falcon hunt, and me
flying up to the curb of my heart from her heart
to bring down the skylark from the blue to her feet,
straining, and then released for the flight.

My mother would be a falconress,
and I her gerfalcon raised at her will,
from her wrist sent flying, as if I were her own
pride, as if her pride
knew no limits, as if her mind
sought in me flight beyond the horizon.

Ah, but high, high in the air I flew.
And far, far beyond the curb of her will,
were the blue hills where the falcons nest.
And then I saw west to the dying sun--
it seemd my human soul went down in flames.

I tore at her wrist, at the hold she had for me,
until the blood ran hot and I heard her cry out,
far, far beyond the curb of her will

to horizons of stars beyond the ringing hills of the world where
   the falcons nest
I saw, and I tore at her wrist with my savage beak.
I flew, as if sight flew from the anguish in her eye beyond her sight,
sent from my striking loose, from the cruel strike at her wrist,
striking out from the blood to be free of her.

My mother would be a falconress,
and even now, years after this,
when the wounds I left her had surely heald,
and the woman is dead,
her fierce eyes closed, and if her heart
were broken, it is stilld

I would be a falcon and go free.
I tread her wrist and wear the hood,
talking to myself, and would draw blood.

A Third Opinion & More For Kafka

A Mural at Balmy Alley

Various people have suggested I get a second opinion, again. Apparently the only organization in the U.S. that provides this service (a medical panel) for cancer patients for FREE is in San Francisco - thesecondopinion.org. So I faxed off some forms to them on Friday...

Social Security sent me a stack of stuff to fill out, work history for the last 10 jobs, which goes back a long time. Also the summary from my interview had a bunch of stuff that was wrong. Not sure what matters. Might be starting to reach the limits of my capacity for paperwork.  Next week I will see if Renee the social worker can help.

Got my blood test results back. Cholesterol is high*. I don't suppose that is the worst of my problems. Vitamin D and B12 are fine. Don't really understand most of the rest of it (alkaline phosphatase, ALT, AST, bilirubin, creatinine, RDW/RBC, hematocrit, neutrophils...), but will forward to Misha.

Bowl of cherries closeup

Seeing Tavakoli on Weds. Don't know if I will bring someone with me or go on my own. My questions:

1. Chemo plan
2. If cancer in bones is incurable, how come mine was cured? Is it a miracle...or just something that happens sometimes?
3. What about this gravel-like thing on my cheek and on my left shin? Need a dermatologist but he will have an opinion.

In general I have been slack on the healthy food and taking all the teas and supplements, etc. It all feels like too much work. And I have massive sugar craving! Strangely though, knowing I'm going to feel like shit very soon, I've been feeling great lately on all levels...

*
                  Your result  Standard range
Cholesterol 273             < 239
Triglyceride 97             < 199
HDL             64              > 45
LDL calculated
                   190              < 129 -

Acronyms, Books, Travel

A lady walking by wanted to take our picture
in front of this heart, even though my hair
looked like this

I spent the last few days walking around San Francisco having a great time with my old pal Jeff. Though we haven't seen each other hardly at all since we were teenagers, he is one of the few people on earth with whom I can totally relax.

Re chemo, I've been trying to schedule some stuff as usual, especially a weeklong retreat at Jikoji and a drive to Montana with Kathy, visiting some folks on the way. Turns out I won't know if I'm on three-week cycles or what, or when the chemo appointments will be, or if I can be away for more than a week...until I meet with Dr. Tavakoli next week, June 13.

My interview the other day at the Social Security Administration, in which the reincarnation of Franz Kafka would have felt perfectly at home, was OK. It was mostly about info gathering. Navigating these strange skies, one must know one's acronyms: SSDI (Social Security Disability Insurance) and SSI (Supplemental Security Income) and SDI (State Disability Insurance.) The first one is what I am applying for. I have an IRA (from the days when I was a technical writer and such a thing was possible), and I have money in the bank at the moment, which might disqualify me. (Postscript: apparently it's not related to income.)

I've been tripping lately on the fact that I've pretty much been happier since I got diagnosed with cancer (that is, much of the time.) Then I came across some Stephen Levine books. Found Healing Into Life & Death at Julie's, then found A Year to Live on our shelf. He works with people who are dying, and the way he writes about it is beautiful.

One of many Mission murals

Like so many of us, Levine at first thought of those who live as 'healed' and successful, whereas those that died failed to heal, but this view changed for him over time. He broadened his definition of healing. He says

"...each unique path led to a common goal...a deeper seeing of life, a deeper participation. Some took the work of deep investigation and the cultivation of such qualities as loving kindness and mercy as a lost child might, an open path through the woods...

"For years our work...has been an encouragement to open fully to this moment in which all of life is expressed, that the optimum preparation for death is the wholehearted opening to life..." (Healing Into Life & Death, p. 2)

Emergency Room

Some of the monkey art at Rudy's

I had three new experiences a few days ago:

1. Visit to emergency room.
2. Barfing with others present.
3. Dilaudid (hydromorphone)

Tong took me out to a real porker's breakfast at "Rudy's Can't Fail Cafe" in Emeryville. It was a great place (challah french toast!) except that my poached eggs weren't cooked well...Two hours later I started getting cramps in my upper abdomen, below my heart, which kept getting worse. Then I started throwing up, which I expected to relieve the pain, at least temporarily, but did not. I tried being mindful of the pain, which was very interesting. It definitely changed the sensation, but I couldn't do it for long. It's hard to relax with something that is trying very tensely to eject itself from your body. Or probably any kind of intense pain takes a lot of training to stay with. 

I had put on an Estradiol patch on my shin that morning. (Misha had suggested it for menopausal symptoms and osteoporosis.) We looked up side effects. I seemed to have all of the following:

cramps; flushing; nausea; reduced tolerance to carbohydrates; stomach bloating and upset; 

I removed the patch at about 4pm I think. By about 6, after procrastinating some as I was dreading getting in a car, Tong took me, shaking, to the Kaiser emergency room in Oakland, which was pretty quiet. Nurse Jackie wasn't there. 

They admitted me immediately to my first emergency room that wasn't on television.  First thing they do is see if they can rule out the worst case scenarios. For me that was an inflamed gall bladder or a heart attack. They drew blood and gave me a blue plastic barf bag, some Zofran (anti-nausea), and hooked me up to an IV. Before I got wheeled to a private room I had occasion to use the blue bag. There were people around. What was the alternative? I could barely move. I thought about actors acting barfing and how difficult that must be, to make a retching sound that seems to originate deep in your soul.

The pain was really rather amazing. I told myself that once I wasn't in pain anymore, I would really appreciate it. This is the second time I have asked for pain medication in my life. (The first was after a few weeks of radiation.) They don't exactly flow freely with the narcotics, do they? You have to ask, which makes me worry that they think I'm a junky just there to get drugs. Different people ask you to use the 'rate your pain 1-10' scale. I said 7 and 6. First they gave me Percocet (oxycodone), which did almost nothing other than making the room seem sort of weird. After I pressed the red button and asked for more, they gave me Dilaudid which was awesome! It reduced the pain by about 1/3, but the thing is, you're so relaxed, you don't care about it anymore. The pain is not eliminated, it just stops being important!

Photo by Tong Ginn

At about 9pm, they said they could discharge me, but I was concerned that I'd just go home and start retching in pain again as soon as the drugs wore off. They gave me a drink and crackers to try and then they sort of disappeared. (I think things got really busy.) After an EKG because my pulse was so low (got down to 46), I was released at around 11pm, my pain at a '2'... 

I think what I had was a combination of food poisoning and side effects from the Estadiol, plus maybe a troubled gall bladder. The doctor suggested I not use the Estradiol anymore until I can talk to my doctor, which sounded excellent to me.

When I woke up this morning, I felt fine, no cramps anyway. I've felt very happy, tired and kind of emptied out somehow...but very  much appreciating not being in pain. 

A Little More Info

On my walk home from Soc. Sec. office around the corner.
Bet you've never seen a graffitied mattress before...

During my interview at Social Security this morning, Dr. Shaia called. It was rushed and I wasn't able to look at my list of questions, but here is the info I was able to get:

• I am likely to get two drugs for chemotherapy: Carboplatin and Taxol in 21-day cycles. 
• Suggested not waiting too long to start, but that a road trip should be fine. Will have to figure out the timing on that...
• First 4 to 5 days after infusion main thing will be fatigue. Days 7-10 are high risk of infection.  By second round, hair loss will start. (I mean it this time.)
• Will start with 6-8 treatments and re-assess mid-way with a PET scan to see how it's working. Six cycles (18 weeks) is the minimum, but could be much longer. 

P.S. I went to the emergency room yesterday. Will write more about that later!

"Sell your cleverness and buy bewilderment." Rumi

Santana Row in San Jose
Photo by Julie Bennett

At least this time I tried to act like my plans were tentative. I wanted to go to Mexico and do a 6-week intensive Spanish course before the Order convention. A summer MBSR course. Teach a series at sangha night on Love and Death...

A few days ago I asked Dr. Littel if he would be willing to do some backup for Tavakoli, since he has been away so much and my post-PET phone appointment was with someone I had never met. So about an hour before the scheduled phone appointment today, Dr. Littel called me to talk about the results of the PET scan. First thing he said was, it is not good news.

I did eventually ask about the cancer in my pelvis. He said that it is all (vaginal wall, bladder wall, bones) completely gone. I remember Dr. Nag saying he could get rid of the tumor, but that it was the other stuff he was worried about...

There are 8-10 small metastatic tumors in my lungs. These were spotted on the CT scan two months ago, but were too small to evaluate. They have grown, and apparently lit up the PET scan. By the way, this isn't called lung cancer, or even secondary lung cancer. It's "primary vaginal cancer with metastasis in the lungs".

I won't know for about 10 days, until Dr. T. gets back, what this means exactly, but chemotherapy for several months seems certain. I have an appointment with him on Weds, June 13, 1:45pm.

Just-born goat at Morgan's school
Photo by Julie Bennett

Before ringing off I told Dr. Littel that I had repressed hope during treatment, but this time I had had hope...but I suppose that was good in any case because it meant in the interim I was in a much better mood!

The last thing he said was that if he ever found himself in my situation, he hoped he could respond with the same poise that I have.

Is the chemo going to, even after it's over, leave me feeling even older? Disabled? I will see if I can talk to Dr. Shaia (medical oncologist subbing for Dr. T.) and get some indication of what's in store...I must go on the summer retreat, and I would really like to go with my sisters to Montana after that.

I have an appointment Monday to complete my SSDI application.

A few positives:

• The disease has moved away from my nether region!
• While chemotherapy isn't something to look forward to, at least it doesn't involve radiation/burning. As Julie pointed out, no more shitting razor blades!
• My lungs are not in any pain, in fact I've mostly been feeling great the last few weeks. 
• My body responded very well to treatment last time, so it seems likely that it will do so again... 

"God has seen you struggling with something. God says it’s over."

The Buddha gets a Brazilian high-five 

Title came from part of a timely email forwarded today by my cousin Sandy.

I've been listening to the excellent Mary Karr (in Lit) work through her struggles with the idea of God and praying while trying to stop drinking. And the other night I saw Betty again. She's the lovely 91 year old Irish lady who prays constantly. (This time I was asking her about the farm she grew up on near Belfast, and, for some reason, how to make buttermilk. I didn't really know what it was, nor did I know I didn't know. So FYI for those of similar ignorant suburban origin, it's the liquid left after you churn butter!)

Who is God? God is a What, but we humans like familiar shapes. We like for things to be alive, or at least we used to. Materialism has changed that for a lot of us.

God has no personality or gender. Or only in the broadest most metaphorical sense, God's character is the character of the earth and sky.

And another

Part of human engagement with God involves projecting not only our vision, but our habits of judgment and intolerance. I remember hearing once that the word God is related to the word good. How could Good have rules, and hate those who break them? The intolerance, the violence, it does not come from outside - from God, or the Devil. It comes from these facets of us. Devotion to God, devotion to any good, should help ween us from these destructive impulses.

Who knew that I would ever profess to know anything about God, having been an atheist my entire life? Buddhism has helped me understand God, though it is not my 'way'. I do not pray but meditation and perhaps especially chanting or more devotional practice are related to prayer in some way. I have always been able to see in some people who have a great deal of faith in God, that there is something good there, it's not necessarily just a big childish delusion as I might have thought in more arrogant and intolerant times of my life. It's hard, it must be said, not to be arrogant and judgmental toward the arrogant and judgmental!

Christianity seems to spawn a huge spectrum of acceptance/ compassion and violence/ intolerance. But this is also just a spectrum of human impulse. The Buddha's teaching, practically speaking, shows us how to resolve the confusion that drives it all.

Lisa on the Zen Center roof,
with solar panels and skyline

I've been feeling so happy. I visited Lisa Kee who lives at Zen Center now and had lunch there. (Not to mention some kind of caramelized macaroon at Ritual Coffee in Hayes Valley. Mmmm.) I sat in our Center giving people their veg boxes, made $67 selling stuff outside and chatting with people wandering by, then taught the drop-in introduction to meditation class.

Talked to two Brazilian personal trainers for an hour afterwards, which I never do! The guy, who was doing all the talking since the woman didn't speak any English, said that I "transmit light". He had a very poetic way of speaking, possibly to do with vocabulary limitations, but some stuff came through. They had a lot of questions, and I loved them. Not surprisingly, now I really want to go to Brazil. I've had this kind of experience several times. You're trying to communicate with someone, and you have to keep it down to severe basics, but then you feel...love.

Later today, I get the news that will have such a huge impact on my life. In a way, I have gotten used to waiting, and have been mostly so optimistic and happy...

An Hour in a Shaking Trailer

The back of the trailer

A PET scan is a picture with a bunch of bright dots on it. The dots represent high metabolic activity, which means cells that are wolfing down glucose (sugar). Also the digestive tract will show up clearly in the picture because of the barium banana drink. (Some doctors want you to have the barium, some don't.) The scan itself takes about 25 minutes, after allowing the radioactive tracer they shoot you up with to circulate. Being in the donut tube is actually pretty relaxing after you get over worrying about moving.

When I was sitting for half an hour letting the stuff circulate, all there was to look at was a machine of unknown function, and an EXIT sign on the door in front of me. I thought it strange that there was an exit sign in a room no larger than a closet. Probably a law? I remembered the signs in the London underground - they say WAY OUT, which is a much older way of saying it in English, whereas EXIT must come from Latin. It may seem like, and no doubt is, a strange thing to think about. For some reason I am interested in Anglo-Saxon (Old English) words.

Anyway now that PET scans and CT scans are done at the same time, the collection of bright dots comes with a kind of map. One gets the impression that before this development the PET scans were rather hard to interpret. Also according to the self identified technologist, exploratory surgery was much more common before CT scans. It was the only way they could see what was going on.

These days, people seem to have a lot of faith in pharmaceuticals, beyond what the chemicals might be capable of delivering...but for certain aspects of modern medicine, I am intensely grateful. At some point in the not too distant past, the medical response to my condition probably would have been to surgically remove the tumor, along with some of the rather important contents of my pelvis. Whatever health problems I have now, at this point they do not involve carrying around pee and poo. Allah be praised!

The donut tube in the trailer

My health plan does not have a PET/CT scan machine in San Francisco. So if you get it done in San Francisco it's contracted out, and you have to go outside to a trailer. From inside it seems to be in one of those San Francisco wind corridors, you could hear the wind howling, and, stepping outside onto the little platform that lowers you down, feel the blast of an arctic gale. I'm going to cross that off my list of places I might like to end up working!

My confidence about positive results of the PET scan is waning a bit...The aches and pains in my lower gut and back, can I really know that the cause of them is not cancer? Ah, one more day to find out, I hope...

P.S. Since my last post, some folks have kindly reassured me about my own sexiness. In that post (about not being sexy), I was writing not about how I think I look or am being perceived, but about how I feel on the inside...

Exam, Talk, + Brief Maniacal Planning

A hallway

Julie and I, just like old times, went to Kaiser today. I had an exam and chat with Dr. Littel, who is a gynecological oncologist (an impressive 10 syllables) and a surgeon. Dr. Patel had suggested that because he is the only gynecologist in my posse of doctors, it might be good to get a follow-up exam with him. He was the first oncologist we met, in January I think.

The exam wasn't as painful as I thought it might be. He said there is a freckle sized bit of scar tissue from the radiation (which will probably never go away.) Or it could be dead cells that have yet to free themselves. We asked a lot of questions. He is a really great communicator and uses a lot of metaphors which I like. For example, he said the distant disease thing is like dandelions. If you pick the dandelions, other ones might appear elsewhere, you don't know until later. In response to my question about whether or not I will 'always' be considered high risk for cancer, he said it is all based on history, and I don't have any yet! As years pass, if my scans remain clear, the perceived risk diminishes. I asked him if it would be all right to ask him questions after the PET scan since Tavakoli is away so often. He said he would be happy to, but also that from now on Dr. T. wouldn't be away any more than anyone else and that “He would have been much happier if he hadn't had to leave last time.” The plot thickens...

Strangely, the most helpful thing he said - in response to my asking about my current symptoms - was that many of his patients report feeling 10 years older after cancer treatment. I would say 15 or 20 years...But it made me feel better because otherwise I keep thinking all these symptoms are going to end, that I'm not supposed to feel so much older, especially when I get out of bed in the morning, stiff and creaking like the floorboards of an old house. When suddenly I need to take a shit and I fear I will not make it to safety...Those are the main things I suppose, other than sleeping, say, two hours more per night than I did a few months ago. ...Oh yeah and the hot flashes are fricking out of control. I know it's a thing that happens to women of a certain age, but I feel that that is not the age I am at right now! I'm sorry to be a whiner. The idea of dying didn't bother me as much as the idea that I have aged 20 years (in some ways) in three months...

Glad I don't look
as old as I feel?

So, I feel a lot older than I did a few months ago, in ways that I may or may not have ever happened without the cancer treatment. Of course without the cancer treatment I'd presumably be dead before finding out whether I as going to get arthritis in my hips 'naturally'...

So what Dr. Littel said about his patients feeling older helped me accept this situation, and that feels better than not accepting it. (Then if it goes away, all the better!) On a related note, a couple of people have told me they didn't understand the part in my last post about my sister noticing that I didn't seem to have any anger. Was it a criticism? No, it was a compliment, something she was impressed by. I thought that was obvious! But it wasn't.

I had a very frustrating time at the Kaiser pharmacy trying to get the Barium, which I will drink the morning of my PET scan (tomorrow.) I won't go into the frustrating details. I'm also going to start taking Estradiol for menopausal symptoms. I have three months' worth, I'm going to take it for that long and see how it goes. Misha suggested it. (My type of cancer is not estrogen sensitive so it isn't risky.) I also tried to get a blood test (Misha also suggested I get tested for Vitamin D) but didn't know I was supposed to fast, so have to do it another time.

I've got possible plans bursting out of my sides, but will not reveal them until at least Friday, at which time I will find out the results of tomorrow's scan, which will show 1) whether or not the known cancer in the bones has shrunk, stayed the same, or grown, and, 2) whether or not there is new cancer anywhere in my body.  I will know by around 5pm this Friday. I have felt for the last while that the cancer will be gone, and everything is fine.

Worry & Sex (Not As Interesting As You Might Think)

Another thought I had on the recent retreat was...well really it felt stronger than a thought, it felt more like a vow. I thought, I cannot live for the rest of my life, however long that may be, afraid of getting cancer again. I simply will not do that. At the same time, I do feel committed to taking better care of my body, eating more nutritious food, getting regular exercise more consistently...

In what ways is my body
like this bleached beer can?

Over the last few years I considered, and eventually lost interest in, the idea of becoming an anagarika (shorthand: a nun), at least in doing so formally, but now I'm coming at it from a different angle...My body does not tend to feel sexy. More often it seems like a wad of symptoms. For example, yesterday, this sort of swath of reddish freckles, a lot of them, appeared on both my shins. It almost looks like a heat rash. My lower back aches. And I have some degree of either chronic fatigue or inveterate laziness. In order to be less unhappy, and reduce physical discomfort, I spend a great deal of time meditating, eating/cooking healthy food, doing medical stuff with both doctors and alternative medicine, stretching, taking supplements and medicinal tea, writing, and eventually, I hope, working.

But you can't say these things in a personals ad...or can you?

Low income 48-year old Buddhist Leo just learned a new phrase, 'medical menopause'. Otherwise, hopefully recovering from vaginal cancer, going hot and cold like a broken fridge in the tropics, soon to be unemployed, and blogging about it all. Care to swap suppositories?

Perhaps I sound bitter? I am not. Just not sexy.

I'm simply unaccustomed to not being...hearty, and being in pain. I am not in a lot of pain, and not all the time. It's a lot more work. Will I get used to it? I try not to complain. I need to look back over what I wrote before, the things I wanted to remember about life.

A delightful moment on Skype

My sister Kathy said last night that it seemed from this blog that I am not angry or fighting the fact that I have cancer, and that it seemed like that when she saw me. Geez, talk about adding insult to injury, at least I'm not doing that. As the Buddha said, like throwing a handful of dust into the wind.

Real Things Remind Me Of Fake Things...

...like the clicky bugs at Spirit Rock that sound like a quickly shuffled deck of cards. The sound of cawing crows outside the shrine room evoked an image of Google's Angry Birds (on the right.) Years ago, partly due to altitude sickness, a mountain in Nepal reminded me of Disneyland mountains. Before even that, I was accused of plagiarism by a famous poet at Cal, partly because I thought of Brutus primarily as a cartoon character. Anyway.

Something's always pointing to something else, especially words, they're always leading you somewhere. Words such as cancer must be one of the most fear-inducing words in the English language. Say it: Cancer. Where does it take you? The word changes the body. Chemotherapy, another doozy. The radiation I got ended up being far more painful, with longer term side effects, but I don't think radiation is one of those words.

One of the ugliest interpretations of
this female Buddha that I have
ever seen! Interesting though.

I want to say a little about my recent retreat at Spirit Rock. The main thing is that I was able to sit in meditation more than I thought I would, which was an absolute joy. I did a lot of yoga to stretch out my hips which are so tight. One day I even felt a great deal of peace in my body. But then the next day it all hurt (sitting and doing yoga, lying in bed at night with my sacrum throbbing.)

Last night, my friend Stephanie* helped me refine some simple yoga poses and advised against others (like the lying down twist, which I used to love but which hurts now.) She would suggest something a tiny bit different from what I was doing, and my body would suddenly feel so amazingly right. After a couple of minutes, I felt so happy. In general I have been in very good spirits since the retreat, which is nice, since transitioning off retreat often seems to be very difficult for me.

Left: Historical Buddha
Right: Female wisdom archetype from
Mahayana Buddhism (same figure
as photo above)

The type of practice they do at Spirit Rock is very similar to what I am used to in the Triratna ("Three Jewels") Buddhist Community. Ours it must be said is more 'religious' in that we do rituals and get funny names when we're ordained. We also, I think, emphasize kindness, community, and creativity more, whereas (it seems to me) they're all about meditation/ mindfulness/ wisdom. I loved their Equal Opportunity shrine (see right). In any case I am grateful to them. My last 'retreat allowance' from working for the center paid for most of the retreat, it dawned on my I need to figure out a way to get on retreats, moving forward...

One other thing about the retreat. The first day or two I felt this sadness, but as if I were somehow out of touch with it. The next day I stopped taking prozac**. One is not supposed to do that, but I figured I am taking such a low dose it would be fine. And it was. I felt more in touch with myself. I also stopped taking the masses of supplements for one day, which helped my digestion. After that I cut down on a few things. My condition continues to improve, albeit very, very slowly.

I did apply online for SSDI (Social Security Disability Insurance). What happens next week will determine whether or not I continue with my application or cancel it.

Dr. Tavakoli is leaving town again. So frustrating. I'm sure he has a good reason, but he can't function well as my main/coordinating doctor if he's away so much. So no meeting after the PET scan, but he has a backup, Dr. Shaia (not even the same sub as last time he left!) who I will hopefully be able to talk to. (Alternative is to wait 10 days or so to get the results.)

Next appointments:

Tuesday, May 29, Dr. Littel - He is the first oncologist I met, back in January I think. I have many things I want to ask him about, working with my various conditions that I have now. Julie is coming with me.

Wednesday, May 30, PET scan - the results of this scan will show whether or not my body is free of cancer. If not, chemotherapy...

Friday, 9am - Meet with SSDI folks; 2:30pm talk to Dr. Shaia.

FOOTNOTES
* Stephanie lives in Puna, India, near Iyengar's school, for many years. She travels all over the world training teachers of therapeutic yoga. Here's a video of her.
** I've been taking a small amount (10 mg) of fluoxetine for about a year primarily as a perimenopausal mood stabilizer. But the treatment has abruptly removed the peri...

Bummer

It takes me a while to write these posts, usually an hour or two a day spread over a few days. Which is why, when I accidentally overwrite one that was almost done, it really rattles my cage, which is what I just did. So it will take me a while I think to write another one. In the mean time, enjoy these two lizards who were catching some rays, as we used to say, on my recent retreat. 

The Mask

A recent (2012) photograph by me of a 1970's
drawing by me of a 1960's photograph
of me with my cat in the dryer

This post is about conflict.

The conflict I felt when my mom wanted to take back the stereo she had just given me, which I didn't want, but had accepted so that she would get rid of it. Irritation at nothing, at air, at air acting the way air acts. She assured me if she didn't use it she'd remember to give it to me later. I assured her she would not remember. Why? Why be so linear? Why start a sword fight with a windmill?

I left San Francisco motivated to be kind, to see behind the masks. George Orwell: He wears a mask, and his face grows to fit it. People do stuff, they can't help themselves, they want something. We want something, we grasp, harden, soften, loosen, tighten, half the time not knowing why, what's underneath. There's confusion behind a lot of what we do. So I resolved to try for a time not to be so deeply distracted by appearances. To look beyond the mask and see that compassion is the only sensible response.

...And then the internal conflict about applying for SSDI (social security) which I finally did yesterday. Do I really want to? Am I sick enough? Will they give it to me? What if they don't? Why didn't I apply earlier? Because I thought I would be, at this point, either very well, or very sick. I didn't consider other scenarios, nor did they occur to me, even once. Yes or no. Yes or no.

My mom's hands, a few days ago

...And seeing how I use food for comfort...for something that is not technically what it is for. The conflict is some sense of, it shouldn't - I shouldn't - be this way.

...And always, I should meditate more. Especially lately, feeling disconnected from my formal sitting practice. Shoulda coulda woulda.

Conflict is painful, and yet trying to get rid of conflict is to add another layer of pain.  In a way, trying to be kind makes not being kind more painful. And that's ok too.

The kindness that I cultivate for others must also apply to my own failures, my own confusion, my own irritation, my own losing of my way...

I would like to edit this more and write more, but I must leave now for a week's meditation retreat up in Marin county.

"Through Love all pain will turn to medicine." Rumi

Compassion

A couple of nights ago, making my way home from a solitary retreat, I stopped to visit my friend Lisa who - after many years of apartment living - beneath a freeway in Oakland - now lives in a house in Novato, at the north end of Marin county.

Betty
Photo by Lisa Sogliuzzo.

She takes care of a 91 year old bed-bound Irish woman called Betty. The photo doesn't quite communicate the feeling I got from her. She has a delicate face and manner. The most striking thing though was how cheerful she was. She thinks about people who are suffering and prays for them in her spare time, and most of her time is spare, she can't really do much else. I got such a feeling of peace and kindness and lightness from her.

I guess if you have complete faith in a God who you feel is always doing the right thing, there is nothing to be pissed off about. Perhaps the Buddhist version would be complete trust in the basic principle that whatever happens is contingent on myriad conditions, which in a way is the opposite of a great being making all the decisions, but similar in that a kind of trust in the reality of all situations becomes possible. Perhaps both attitudes can produce a deep sense of a lack of control, a letting go that is incredibly freeing, and conducive to happiness.

Skyward

Of course, meeting someone who has been unable to get out of bed for 10 years puts one's own suffering into perspective. You might say, well, she's 91 years old, it makes sense that she's very ill. A situation might appear to be more or less tragic depending on one's circumstances, but at the end of the day, suffering is suffering. Does one ever think that suffering is supposed to happen, that it's the right time? There's a degree of tragedy, at least for the person who's got it going on. I've been feeling sorry for myself to some degree, and meeting Betty put that into perspective.

She seemed genuinely happy and light hearted, without denying what her difficulties were. She said, "I miss being able to do things." She had been a very busy woman in her life. She was grateful for the care she was getting, and aware of so many others who do not have it. And she was sad to have virtually no living friends her age, but accepted it all with a striking grace and engagement.

Betty made me want to think of other's suffering more often, to be kinder.

Doodles for Recovery

My response to the question,
"If illness were a monster - what would it look like?"

I went to a three-hour art thing today for people with cancer. It's part of the larger Art for Recovery program at UCSF.

It's funny, over there - just around the corner from the Geary Street Kaiser building - I get the feeling when I tell someone I'm from Kaiser, that they feel kind of sorry for me. I can see why, not in terms of medicine, but in terms of other kinds of support. They got it going on over there. I went to a therapeutic yoga class yesterday. There's dance, pilates. It's all free and open to the (cancer patient) public.

Graffiti, Petaluma gas station toilet

It was nice to be around people who have/had cancer. Most of them are either disabled by/in pain from the treatment they had years ago, or they are still actively battling the disease, sometimes over many years. They seemed like a pretty tight knit group but they were also very friendly.

I felt understood, and listening and talking while doodling is excellent.

Trying to Drink Whiskey From a Bottle of Wine

An old tree at Boggs Mountain 

This is a line from an old Elton John song (or are all Elton John songs old?) that went through my head many times during the two weeks I spent alone at the SFBC Sugar Shack in Northern California.

I wrote a few draft blog posts, none of which survived, because I felt they were too whiney, they were trying to drink from the wrong kind of bottle.

My tumor, the primary and biggest cancer, is gone. I was told by the doctors and expected, and I suspect others expect, that my body would roughly go back to how it was before. Yet, I seem to be suffering, in one way or another, more than I was during treatment.

I spent the two weeks, among other things, getting to know my body as it is now, and not wanting to get to know my body as it is now. I had many dreams of frustration, trying to pack, trying to ascend a staircase, trying to take a shower...many efforts thwarted. (I also heard doorbells, and someone knocking at the door, while in the house, and smelled incense [in my car] when there was no one there!)

A place to ponder

The health section of The New York Times recommends that people with arthritis  avoid staying in one position for too long. Which is a big part of what meditation is, of course...at least the kind I have mostly been doing for 20 years. Dealing with this change is going to take a lot of getting used to and creativity. Of them all it is what makes me the saddest.

I do feel that in four months, my body has aged 10 years, in some ways. I've been doing yoga every day on retreat, and this helped my pelvic bones feel much better. I will do what I can to counteract the effects of the treatment, and who knows how things will be in a year, but for the moment it is, off and on, deeply depressing.

On another note, I just sent my email re-entering the consultation process to become a preceptor and ordain Dawn next year, the prospect of which makes me very happy.

On an even less obviously related note, it occurred to me that in addition to the gold that the Europeans found in California, they must have gotten boners as well seeing the trees here, how incredibly enormous they must have been. In Boggs Mountain park there was ONE old Douglas Fir, around 6 feet wide, huge. This area was full of Doug Firs possibly until the 50's. It's not that the trees here are small, or many of them are not, they just don't seem old, they don't have girth...I remembered that some part of the history of humankind is the history of deforestation, going back many thousands of years. It makes me sad, because I really really love big old trees.

While much of the densely populated areas of the world have probably been deforested many times, until relatively recently, Northern California was still jam packed with huge, beautiful old trees. The only place in the world with Redwoods, some like 20-story buildings, thousands of years old, with their own unique ecosystems in the sky. I do realize that I am staying in a house made of wood, and my home in San Francisco is made of wood. And we burn wood here to keep warm!...Still, I feel sorry for the millions of trees, and the millions of birds and other animals that depended on them to live.