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.
Saturday, June 23, 2012
Friday, June 22, 2012
Actual Chemo
P.S. I changed some blog settings so it should be easier to post comments now.
Thursday, June 21, 2012
Fear of Owls
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.)
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.
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.
Saturday, June 16, 2012
Chemo Appointment & Support Group
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| On a Pole in Westfield Mall |
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.
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.
McLaren Park - 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.
Ordinarily I would edit this more. But I need to go to sleep.
Thursday, June 14, 2012
Cancer Cures + I Stopped Eating Sugar, Again
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| Whole grains, that's what I need [Women's Building] |
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.
Wednesday, June 13, 2012
Chemo Info
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.
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| Oncology waiting room |
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/]
Tuesday, June 12, 2012
Healing & Choices
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| The wares at Ross Dress for Less |
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.
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| A merciful soul painting over graffiti on our street |
- 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.
Monday, June 11, 2012
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.
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.
Sunday, June 10, 2012
A Third Opinion & More For Kafka
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| A Mural at Balmy Alley |
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.
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Bowl of cherries closeup
|
- Chemo plan
- If cancer in bones is incurable, how come mine was cured? Is it a miracle...or just something that happens sometimes?
- What about this gravel-like thing on my cheek and on my left shin? Need a dermatologist but he will have an opinion.
*
Your result Standard range
Cholesterol 273 < 239
Triglyceride 97 < 199
HDL 64 > 45
LDL calculated
190 < 129 -
Thursday, June 7, 2012
Acronyms, Books, Travel
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| A lady walking by wanted to take our picture in front of this heart, even though my hair looked like this |
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.
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| One of many Mission murals |
"...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)
Tuesday, June 5, 2012
Emergency Room
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| Some of the monkey art at Rudy's |
- Visit to emergency room.
- Barfing with others present.
- Dilaudid (hydromorphone)
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.
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!
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| Photo by Tong Ginn |
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.
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.
Monday, June 4, 2012
A Little More Info
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| On my walk home from Soc. Sec. office around the corner. Bet you've never seen a graffitied mattress before... |
- 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.
Saturday, June 2, 2012
"Sell your cleverness and buy bewilderment." Rumi
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| Santana Row in San Jose Photo by Julie Bennett |
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.
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| Just-born goat at Morgan's school Photo by Julie Bennett |
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:
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- 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...
Friday, June 1, 2012
"God has seen you struggling with something. God says it’s over."
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| The Buddha gets a Brazilian high-five |
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.
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| And another |
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.
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| Lisa on the Zen Center roof, with solar panels and skyline |
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.
Thursday, May 31, 2012
An Hour in a Shaking Trailer
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| The back of the trailer |
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!
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| The donut tube in the trailer |
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...
Tuesday, May 29, 2012
Exam, Talk, + Brief Maniacal Planning
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| A hallway |
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...
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| Glad I don't look as old as I feel? |
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.
Sunday, May 27, 2012
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...
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.
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.
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| In what ways is my body like this bleached beer can? |
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.
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| A delightful moment on Skype |
Thursday, May 24, 2012
Real Things Remind Me Of Fake Things...
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.
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| One of the ugliest interpretations of this female Buddha that I have ever seen! Interesting though. |
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.
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| Left: Historical Buddha Right: Female wisdom archetype from Mahayana Buddhism (same figure as photo above) |
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.
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...
Tuesday, May 22, 2012
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.
Sunday, May 13, 2012
The Mask
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| 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 |
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.
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| My mom's hands, a few days ago |
...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
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