Saturday, December 8, 2012


Nimbus Cukurcuma Hamam II, 2012
by Berndnaut Smilde
After the meeting yesterday with Dr. Nelson and sad falafels with Tong, Jules and Candradasa, I went to the awesomely named Relax Feet for a massage. I had one coupon left that Kathy got me over the summer, but I forgot to bring it, but they only cost $30 anyway. The lady badgered me into spending $180 for three months. Ordinarily I won't be badgered. But it was a great deal! And why not live a little?

While feeling the contact with my body and the slow relaxing, images and thoughts appeared. My mind went to my chest, how it hurts like grief, like a regular heartache, but is cancer. So finally it is heartache that will kill me. Again, I feel like no one, doctors, friends, me, was expecting it to go this way. But it keeps going. For the last few months, the possibility that things might go in a different direction seems to get more and more remote. She said some cancers are resistant to treatment, like mine, and pancreatic. I didn't know mine had that reputation. Or maybe she was just talking about mine in particular.

The battery in my recorder was low, so while it acted like it was recording the meeting with Dr. Nelson, it wasn't.

Note that the tumors are
along the central line.
Big one in upper right on photo.
An x-ray is a less specific and less toxic way than the other scans to get a feeling for how things are going. The nodules are obviously growing. The largest one in the left upper lobe is more than 42 mm (1.7 inches). I am getting a torso CT scan Monday morning which will give more specific info about size, and also see if anything is growing elsewhere (bones and liver are classic favorites.) Oh yeah, she also wanted to see if any airways are on the verge of being blocked. Conceivably I could get two weeks of radiation before going to Hawaii (Dec. 27).

Recently I looked up the questions Renee, the SSF social worker, advised me to ask the oncologists. (That post is from March, here.)
  1. Do you foresee I'm always going to be on chemotherapy?
  2. If I don't do more treatment, how long would I live?
  3. RE more chemotherapy - What is it buying me? What if I don't do it?
  4. What would a decline with my type of cancer look like?
I would add: What is the hoped for benefit of chemotherapy and what are the other possibilities? I wish I had asked Dr. T. that. I did ask Dr. Nelson #2, which I wrote about in the last post. Next time I need to ask #4, although I think I know the answer - fatigue and shortness of breath, which I'm thinking must eventually lead to suffocation. Where else could it lead? Or maybe they have some way of helping one leave this world in a more pleasant manner.

Dr. Nelson suggested not being away for more than two weeks, primarily so they can deal with symptoms when they emerge. Here are my current travel plans. I'm going to have to parse out some of them in smaller chunks, and cancel others. For example, two months in the UK in the fall is too long.
Dec 27, 2012 - Jan 10, 2013: Hawaii 
February - April: Home. Eight week MBSR course starts Feb 6. Class at city college?
May 3 - June 9: NH, NYC, Spain, LA. [Co-lead retreat at Aryaloka in New Hampshire + practice day. Visit New York. May 24 - Jun 5: Two weeks of Dawn's ordination retreat in Aragon, Spain. Jun 5-9: Generation X Teacher's Conference at Deer Park monastery in So. Cal.]
Rest of June and July: Home. Perhaps Montana around July 4. Perhaps leading a "Mindfulness in the Wilderness" retreat in Montana!
August 2 - Oct 2: Scotland, travel, and monthlong retreat Devon England. [August 2-9: Co-lead improvisation retreat at Dhanakosa in Scotland. Possible Aug 8-12: Order convention at Wymonham. Aug 21: 50th birthday. Sep 4-Oct 2: Co-lead monthlong Buddhafield retreat with Paramananda in wet field in Devon, England.]
I feel very healthy and energetic (with minor chest pain and some radiation-reduced functionality in my pelvis). All the complimentary medicine, walking, working with my mind, shamanic healing, eating no sugar...did it help anything? It makes me feel good anyway. I was thinking yesterday, My body is finishing up with living. The cancer is incredibly robust.

In any case I need to have a plan, so I'm planning to live for around another year. After that is just bonus points. Or maybe I'll start living on kale smoothies and that will cure everything, but it's hard for me to believe anything remotely like that anymore. I will call Keith Block's place in Chicago on Monday and see what they say...


  1. Ah....and so things come into another zone of gettin' real and also uncertainty. Sobering. Not having your recorder work is a bummer. It's hard to remember all the details and possibilities. I know you've got family in town, still, would love to see you.----much love to you!

  2. I'm looking forward to seeing you in Hawaii. Although Rich's family will be here around the same time, I will make time to see you wherever you are, if you wish. I'm happy that the quality of your day-to-day life seems positive and strong. The rest is hard to bear and I am glad that you have such good friends close by to support you. Much love.

  3. Sending love, Suvanna, and light to your lungs and heart. Regarding the kale smoothie, and healing or comfort vs cure, something that helps with short term comfort is sometimes all we have, even if we aren't terminally ill. If it helps an upset tummy or gives energy for a little while, that's a perfectly fine reason to eat the fungus or drink the algae. At least that is what I tell myself. I understand your skepticism, and hope that flavor gives comfort where cure is unavailable.