Friday, April 12, 2013

OK, I'm officially dying now.

Not to be melodramatic, I think it's realistic.

Misha's was wonderful this morning. She put a lot of needles in my upper chest, front and back. My lungs opened up, and I stopped coughing. It felt so great. But as soon as I walk out I'm coughing again, though it probably won't be back in full force until tomorrow. I slept for an hour there, and I slept when I got home. I am much more tired lately.

I suspected there were more metastases, but since I am usually wrong at such guesses, I placed no wagers. But I was right. As with the new mets in my lungs, the reality went beyond my imagination.

Dr. Nelson called at around 4:30. We didn't even talk about my lungs. There is a 2 cm. tumor in the left lobe of my liver, and disease in my spine, mid-upper back to the sacrum. There are also 'spots' - not totally certain that they are cancer - in my spleen and next to my adrenal glands. I pasted the report, or most of it,  below.

I told Dr. Nelson I had warmed up a bit to the idea of chemotherapy. I did say of the various options available for chemo, I'd like us to pick the one least associated with neuropathy. She said Topotecan and Avastin are good, which was what she had in mind anyway after talking to Dr. Brooks at UCSF.

She said if I am going to do treatment, it would be good to start in the next week or two. I told her I'd let her know next week.

Next week I will also ask her:

  1. What would a decline look like for someone with my condition?
  2. What can I hope to gain from chemotherapy at this point?

I had to tell Paramananda that I couldn't talk about the phone call until I was done packing and we were in the car. I'm at Jikoji now, it is very beautiful. But trying to figure out how to navigate among 30 people, many of whom will automatically say when they see me, after the American fashion, Hi, how are you? which is really quite terrible for me. (I know that it's just what people say! But I'm pretty sure at our brief check-in, I'm going to ask them not to.)

Some of the report from the PET scan:


CT scan was primarily used for attenuation correction and
registration of landmarks, and will not be reported separately
here. If clinically indicated, a diagnostic CT scan should be or
should have been performed within 3 months of the PET-CT scan.

The brain appeared grossly normal. Imaging through the head and
neck showed symmetrical physiologic labeling in the salivary
glands, pharynx and larynx without abnormality. There was no
abnormal uptake in the lymph node groups, including the
supraclavicular and axillary groups.

Imaging through the thorax now showed more than 20 foci of intense
labeling, SUV up to 17, several lesions coalesced to form masses
up to 4 cm in size. A 3.5 cm mass with SUV 13 indented the right
heart border. Hypermetabolic nodes were located in the
paratracheal, precarinal and hilar positions.

A 2 cm lesion in the lateral segment of the left liver lobe had
SUV 10 and a small lesion in the spleen had SUV 6. Heterogeneous
labeling was otherwise noted in the liver and spleen without other
focal abnormality. A 2.5 cm lesion was identified in the right
adrenal with SUV 13, and two smaller foci were noted at the left
adrenal with SUV up to 6.2. A focus superior to the metallic seeds
had SUV 6.3. Other areas of uptake within the abdomen and pelvis
appeared to be related to expected bowel and urine activities.

Many intensely hypermetabolic lesions were now located in the bony
skeleton, on the left side of C3 with SUV 7.5, the T1, T9, L1, L5
vertebrae, multiple sites in the sacrum, the left anterior iliac
bone, the right acetabulum, right pubic ramus and the left ischial


PET-CT study showed wide dissemination of malignancy since PET-CT
scan of 8/16/12, to the lung parenchyma, mediastinum and hilar
regions, the adrenals, liver and spleen and in multiple skeletal


  1. I'm so sorry to hear this. There is really nothing else I can say, except I love you.

  2. I'm really sad to read the news of your PET scan results. I'm sending metta down the coast. I hope the retreat is restorative in some way.

    Once a good friend told me that things are never so bad that we can't make them worse. You have something going for you in that you are likely to be skilful with bad news. Sending strength.


  3. Dude. Again WTF.
    I am sending you much love and healing in this space of intense news. You are in my thoughts and I love you to bits. Xxx

  4. Now I'm home and have read the findings. Well. There they are, here you are, here we all are together. I love you. Sending you that and also quickness to deflect all 2nd arrows and continuing to rejoice in your many, many merits!

  5. After listening to your talk on Free Buddhist Audio, I have been following your blog and sending you lots of Metta.. You are a tremendous inspiration and are very present in my life. As a fellow order member, being from the USA and so many other reasons I feel greatly connected to you... Thanking you fully......Amoghadevi

    1. So nice to hear from you Amoghadevi! xox