In Eight Steps to Happiness Geshe-la says "'Self' and 'other' are relative terms, rather like 'this mountain' and 'that mountain ... 'This' and 'that' therefore depend upon our point of reference. This is also true of self and other. By climbing down the mountain of self, it is possible to ascend the mountain of other, and thereby cherish others as much as we presently cherish ourself."

Friday, November 29, 2013

Looking Back, Part 2

For the purposes of this post I’m going to refer to our heroine by her first initial, M, because if you pronounce  it in a certain incorrect way, it can sound like the verb “am,” to be. But how be she? How does she exist?
Her name can be useful. For example, many of your have heard the joke I often use when I introduce myself with my nickname, Mimi, because it sounds like someone pretty obsessessed with themselves: Pronounced as “me, me” and spelled with two I’s, it’s a reminder of self-cherishing. Gen-la Dekyong told me that when I realized the practice of Exchanging Self with Other, they would have to call me “you-you,” but for now the name is all too fitting.
It’s also funny that M’s so-called “real name,” given by her parents and recognized by the legal system, begins with the letters “mere,” so even her true name is a reminder that it is mere name – made up, a complete fiction, like everything about her and the rest of the world.

OK, continuing the tale of M’s cancer adventures, telling a story about how she be in a more conventional way.

In June she had her usual 3-month CT scan to see how the chemo was working, and the results were ambiguous: The doctors couldn’t say for sure if the couple of small spots still in her abdomen were tumors, or just some kind of benign scarring or remnant of some kind. (By the way, regular CTs remind me of Groundhog Day: If you see a shadow on the ground/scan, you get another 6 weeks of winter/3 months of chemo. Like G Day, the CT test isn’t foolproof.) Her body was feeling pretty good and M was very optimistic about her path to remission, maybe even being there already. Mostly she was continually grateful for having access to this promising drug and the chance to serve others by participating in a scientific study.
To get additional data about those spots, arrangements were made to get a PET scan in July. A PET’s a more expensive test that shows metabolic uptake, so it can distinguish tumors from other tissue, and insurance doesn’t like to pay for them, part of the reason for the month delay. My very experienced doctor also had a sense they were tumors and thought another month of chemo would clinch matters. Again I felt quite confident that it would show that any small malign bits were gone, and I’d be finished with chemo, at least for a while (this cancer tending to be chronic, until you really purify).

Then in late June, my beloved neurosurgeon died. Greg Foltz was the amazing doctor who did the brain surgery that allowed M to make it to the Brazil Festival at the last moment. Many of you have heard that story.

Here’s how it started, based on my post at the time, Gone to My Head:
“Yesterday afternoon I had a post-op visit with my oncologist, where mostly we talked about which chemo to do and when to start it. At the end I mentioned [almost as an aside, not thinking much of it] that every morning I wake up with a headache over my right eye, in the middle of my eyebrow, which goes away when I take 2 Tylenol. I rarely get headaches, so it was notable that I've had one every day for the last 2 weeks. He didn't think it was anything but recommended I get a CT scan just to be sure, but right away, late on a Friday afternoon. When the CT specialist read the scan, he sent me right back to my doctor, who had stayed late in his office after everyone else went home, because the CT showed that I had a metastatic tumor in my brain, which is very unusual for ovarian cancer - it tends to hang around the stomach. … My oncologist thinks I should cancel the trip to Brazil. ...”

That wonderful oncologist, Dr D, who picked up on such a small clue, was the one who also did my initial surgery in April, 2009. My primary doctor, who I love, thought so highly of him she said that if she had my symptoms, he would be her choice; not to go to anyone else; and even in this fairly urgent situation, if I had to wait for an appointment, it was worth being patient. Who are these people?
Important for you and your loved ones: Know that cancer can be deceptive. The amount of pain is often not an indication of a symptom’s seriousness. I know of too many people with terrible migraines, for example: excruciating pain, but not a tumor. Or of a friend of a friend who was never sick in his life; he had a mild pain in his back and was dead from cancer within the month. If something’s going on, get it checked out.

I switched oncologists from Dr D to my beloved Dr K when Dr D’s highly regarded referral neurologist wasn’t able to operate on me in time for me to go to Brazil. I tried finding another neurosurgeon but kept running into obstacles, such as the one I only learned after three conversations with his scheduler was out of town for a week.
 A friend (another one who repeatedly acts as an emanation) connected me with Dr K. I got an immediate appointment with him at the very end of the day, at the end of which, after hours, he phoned his friend Dr Foltz, who gave me a 9am appointment the following morning.
Dr F clearly explained the situation and patiently anwered my long list of questions. He said that he could operate on my head the next morning, which would give me the couple of days of recovery I needed to be fit to fly, but didn’t push me into it, saying I could back out at any time and not be preventing someone else from a needed operation. But there was no way I was going to back out. I had great confidence in him and his co-surgeon, a young woman who was technically a PA I think but a highly competent doctor herself, who he treated like his right arm, as well as the rest of the staff I’d encountered at the Brain Institute.
Besides, it was only brain surgery. That’s a little joke, but both neurosurgeons told me that if you insist on having a tumor in your head, that’s the place to have it, in the “spare tire” of the cerebellum, close to the edge where it's easy to get at. Also ask for an "encapsulated" tumor confined in its own borders.

I’ve had this kind of interesting mixed karma throughout this experience: not great to have cancer but if you’re going to have cancer, have it in this way, with emanations at every step. It’s been incredible.
Although I wouldn’t wish disease – or any kind of suffering – on anyone, I know a lot of patients who say cancer’s the best thing that ever happened to them. Another reason for this blog is to allay fear, by documenting a particular person's actual experience, because the prospect of cancer often represents for people the worst thing that could happen. Education helps. I like that my cancer center has a banner that says, “Cancer is a word, not a sentence.” I certainly don’t mean to underplay how serious and difficult it can be, but there are all kinds of awful suffering in samara, and with Buddha’s teachings we have ways of “composting” them into fertilizer for growing the realizations that are going to permanently end those troubles.

At the follow-up a couple days after surgery, we asked many more questions about whether it was wise for me to travel all the way to South America, because some friends and family thought I was crazy to think about going. You do not want to get on a plane with a brain tumor – it will probably kill you – but I learned that once it’s been removed and your body has a few days to recover, it’s fine. The only conditions Dr F gave forced me to become a bit of a princess: Clean pillowcase every other night, wash hair with filtered water, to prevent an infection in the scar in a country that might not have the cleanest water. I have fond memories of my Sangha giving me a kind of salon treatment under the water filters outside on the Temple grounds.

I don’t have words for how incredible it was to make it to that Festival. At one point, when despite my efforts I couldn’t find a good doctor who would be able to operate in time, I did let go and acknowledge I most likely wasn’t going to make the trip, leaving it in Dorje Shugden’s hands. As I like to say, “He’s the best travel agent.” He did something similar with another Festival I didn’t think I’d make it to because of my health, Geshe-la’s 2009 Summer Festival. All accommodations within a space shuttle’s drive of Manjushri had been booked for a year it seemed, but our Protector got me a deluxe room at the very last minute. It was another sitation where I was calling around trying to find anyplace that would take me, and having another one of those Sangha emanations suggest a place.

It was shocking to lose Dr Foltz. You don’t expect your doctor to die before you, particularly if they’re younger, and he was about my age. It was a reminder of a Medicine Buddha teaching about how even conventional doctors, though potentially very beneficial for a particular malady, aren’t ultimate sources of refuge because even they get sick and die. M thought of him as a key part of her healing team, and knew that if anything suspicious every showed up in one of her routine brain MRIs, she would go back to him.
His death was a much bigger loss, not just for all his patients, but also his family (he left behind a wife and 2 kids), his colleagues, friends and community. Reading tributes to him, the word  “compassionate” came up repeatedly. He was a Julliard-trained concert pianist, but when a friend died of cancer, he switched to medicine, becoming a highly competent surgeon and researcher, as well as the head of the tumor board at my cancer center.
Here's a link to one of his obituaries.
I didn't intend to make these new posts into a cliff-hanger - I thought I could get us at least to that turning point in July - but this is all M can do for now. Stay tuned for the next installment

Wednesday, November 27, 2013

Looking Back, Part 1

But first an apology …
I am sorry to have been remiss in updating this blog. Some friends would ask me to write something, and I kept meaning to, thinking I’d get to it soon. Most of us know how that goes, to some degree, but this was particularly bad. I’d especially like to apologize to those who were concerned about my health because they’re not in my area and don’t see me in person, and this blog was how they were following my condition. The last thing I wanted to do was worry anyone, when one purpose of writing this was to do the opposite.
It’s worse in this case, because part of me knows I should have just thrown up a quick post giving the shortest of updates, but I was sure I’d be able to do a better one if I just waited a day or two. (In general I’m not a perfectionist – and in my practice try to do the next best thing when I can’t do what’s ideal; but that is a subject for another post.)
Time sped ahead, as it tends to do, slipping quickly into the future, more even quickly than we realize. (Another reminder to get a move on, along the spiritual path, because time is short. As our class just heard from Shantideva, “This is no time to sleep, you fool!”)
I view my slowness in getting around to writing an update as a version of the secondary Bodhisattva downfall of not replying to others. Will keep trying to purify that: Good thing our annual Vajrasattva Retreat starts next Saturday!

In my defense I will say that because of the fatigue, my main side effect on chemo over these last few years, my days are shorter, and I often don’t get to the important things I want to do. Plus, since February any blogging energy I had went into the Portugal Travel Tips blog, which was easier for me to do because it was just putting together information, rather than trying to write more thoughtfully. Thinking has also been more difficult, another side effect of the chemo. For example, it would take me three times as long to write a dedication for Offering to the Spiritual Guide as it used to. Memory too takes a hit.
You’ve probably heard cancer patients talk about “chemo brain,” which I like to mispronounce as “chemo blame,” an all-purpose excuse for faults whether they’re really related to treatment or not. But I’m kidding, because the trick is to acknowledge there are these potential effects without letting yourself off the hook, as though you’re just along for the ride – the complete opposite of the Buddhist approach.
When last we heard from our heroine (and that is correct as lowercase, except in her imagination – but she is on her way to the enlightenment that will merit the uppercase “Heroine,” as are all of us Bodhisattvas; thank you for keeping me company and providing support along the way), she had miraculously qualified for a clinical trial that gave her access to an experimental drug. That probably isn’t technically correct: I don’t think I’ve ever heard any Buddhist use the word “miracle,” but maybe I can get away with “miraculous,” as in extraordinary, as in emanated by the Buddhas.

By the way, I’m back on Dex, the corticosteroid that has often accompanied me on these adventures. I’ve been on and off, and at varying dosages, this drug that helps alleviate side effects but also increases appetite – with subsequent weight gain – and causes insomnia, a tendency to obsessiveness (people are known to stay up all night cleaning), talkativeness, but also gives energy. When I meditate, the monkey mind is much stronger, so I have to use a tighter leash. 
It’s another one of those phenomena I get to see closer up being on different drugs, trying to balance an understanding of what’s happening without using it as an excuse to give in.
So, like everything in samsara, at best a mixed bag. But thought I’d warn you because my writing – obviously a reflection of my mind – is likely to go off on tangents, and have trouble getting back to the main road – if I don’t keep an eye on the map.
Where were we? Yes, recapping her Buddhist cancer adventure …
Last October she started on this treatment that combined 2 traditional chemo drugs that she knew well with a promising new drug that was said to be especially effective for her genetic profile. She learned about it when she had a tumor wander to her brain, which isn’t the usual scenario for her cancer but indicated that she probably had this mutation, and that there were some new drugs that worked especially well for those carriers. Another one of  those mixed bags: You don’t want a mutation that tends to cause cancer or one that tends to cause cancer to go to your brain, but if you do have it, there are drugs that work better for you than for other patients.
But I was told repeatedly by doctors and nurses that I almost certainly wouldn’t qualify for a clinical trial, the only way to have access to that drug, particularly an early-phase trial like this one, because all the chemo I’d already had or the brain metastasis would rule me out, pharmaceutical companies understandably wanting the most promising patients so that the drug can move forward to approval. So it amazed even my doctor that I qualified for the trial. Not at all ordinary.

Another aside: It’s kinda fun, and interesting to write in yourself in the 3rd person. I’ve never thought of this before in terms of writing, but it seems useful as another way of looking at the emptiness of our self. We commonly, instinctively, think of ourself in the 1st person, as me or I. So what happens when we put ourself into a character of she or he? It’s a bit like becoming That Mountain, looking back at This Mountain. You see yourself from the outside, as others might view you, but of course everyone’s view is different.
Notice how hard it is, because she keeps slipping into  writing in the “I” mode… Anyway, something else to think about it, that might deserve its own post at some point.
Speaking of characters, something else I’d like to write more about some time is playing around in meditation break with imagining myself as an actor, seeing the environment as a set, hearing others speak the lines I’ve written for them …. Simply projections, an unreality.

The clinical trial was going well, with the tumors shrinking and the side effects mild, until a turning point came in June. …

Sorry but I need to stop for now. In the past, I would have just saved this as a draft and made it better, but I am trying to follow my own advice here that often something is better than nothing.
Blogs are serial by nature, so maybe this serialization is fitting.
Stay tuned.

Saturday, November 23, 2013

Doing the Opposite

Here's a wisdom nugget for opposing your self-cherishing from Gen Zopa of Victoria, via Gen Chöma, from last weekend's wonderful Post Fall Festival Retreat in Seattle she led: Whatever you want to do, do the opposite. Occasionally what you want to do and what is good for you will coincide, but usually this is challenging. I've been trying it out, and it's a good way for me to see my selfishness in action.
To lighten it a bit, here's a joke: During a retreat break, I wandered into the kitchen where some kind-hearted Sangha were making coffee. What's the opposite of the coffee you want? Um ... decaf??