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.