Adventure #2, as of Nov 25

Hi Folks,
Quick update from the week of activity from Nov 17-25 on this adventure back into PTCL-NOS.
Quote I Keep in Mind:
“There is nothing either good or bad, but thinking makes it so.”
Hamlet, Act 2, Scene 2
I Feel Good Progress Was Made, Finally.
  • Mon, Nov 18: The Last Straw. Sometimes you need that one last irritation to take action. Today, the original oncologist assigned to me, Dr. Chen, emailed me to say, “I have spoken to a general surgeon. And I have decided to refer you for a needle biopsy [which only gets you fluid, no tissue to analyze] in your left underarm.” This is one day before the PET scan and a trove of useful data. And a needle biopsy ran opposite of the advice from the T-cell specialist at Seattle Cancer Care Alliance (SCCA). I replied, “Isn’t the whole point of tomorrow’s PET scan to know we have the richest, lowest risk site for a biopsy.” He did not reply. I asked myself, Abe, why are you fighting this? Just find someone else – Chen is not the only option. So I looked thru the list of Kaiser oncologists, found Dr. Camille Puronen, who was trained at UW, researched T-cell lymphoma and even interned at SCCA.
  • Tue, Nov 19: The All Important PET (positron emission tomography) Scan. For PET scans, you are injected with a dose of sugar where a radioactive isotope is attached to each sugar molecule. The parts of your body with oddly high metabolic rates consume more sugar. Cancerous cells have very high metabolic rates. Bingo, the scan shows where the action is so you can remove a sample of that active tissue (a biopsy) and determine what malady you have. I drove 60 miles to Olympia for the first available slot for a PET scan.
  • Wed, Nov 20: New Oncologist. I met with Dr. Puronen at 11 am Wed. She struck me as empathetic, collaborative and nimble. I switched oncologist.
  • Wed, Nov 20: Traction. Dr. Puronen called 5 hours after our meeting to say, “I have spoken with your oncologist at SCCA, lined up a core biopsy for Friday and your first round of treatment for Monday.” That’s the best call from Kaiser I have had in 7 months.
  • Fri, Nov 22: Biopsy. Armed with the PET scan results, the general surgeon toured my body using the imaging software. He went out of his way to ensure I was “all in” and while we kept to the same underarm, it was based on data. The procedure is interesting: apply local anesthetic; use ultrasound to have a live image of the target site; insert a fat, spring loaded needle into the tumor, hit a trigger; pop! a cylinder of steel pierces into the tissue and you retrieve a section of cancerous lymph node. I watched it live on the ultrasound machine (I wish I had video’d it) and told the surgeon, “Doc I’m not here to minimize pain. I’m here to maximize the tissue we get. If you need 10 or 12 cores, go for it.” He paused, then told his team, “let’s up it from 3 to 6 cores.” The whole procedure took 30 mins. A BIG THANK YOU to Anne Miano for driving over, picking me up, bringing me home and plowing thru rush hour traffic.
I Am Growing, in a Puzzling Way
  • In the past 2 weeks, I have gained about 6 pounds and it shows: a bloated left arm; similar right leg; a bloated left abdomen; and a bulge just below my tummy and above my groin. My left arm’s skin is tight. Like a balloon. What an odd feeling. Some parts of me have the shape of a person 60 pounds heavier than myself. From what I can tell, the lymphatic fluid is not moving like it should.
  • I have aggravated this problem actually. Sleeping lying down does not work as the tumors in my underarms seem to pinch something. So I sleep in a reading chair with an automan. I sleep better now than in my bed. But after seeing the arm / balloon problem, I now stack a few pillows to elevate my arms and today the swelling looks to be a little less. Being versatile is important, no?
I Am Arming For the Battle
  • It’s vital to remove things that create aggravation, or see them in a different light. I now feel that Dr. Chen, the original oncologist, could have been a writer for Saturday Night Live. He’s just too good at foolish comments. Here’s 3.
    • “Wow, that’s not a lipoma, you DEFINITELY have lymphoma!” As if he is talking to a colleague and not a patient, this was Dr. Chen’s way of sharing his POV about the malady he saw.
    • “Who would ever drive to Olympia for a PET scan?” I raised the point that my lymphoma is very fast moving, so what are earliest options as the local Kaiser PET facility was booked. He felt driving 60 miles to a test this week was less optimal than waiting a week to get the test in-town.
    • “I booked you for treatment this Monday, Nov 25, did you want to keep it?” The other option was Dec 12th. He had booked this at the urging of Dr. Puronen and I think he was looking for acknowledgment. Hmmm.
Food, Part 1
  • A big thanks to my sister Susan, who sent me 3 very useful books on how to bolster medical treatment with diet and a holistic approach: Cancer-Fighting Kitchen; Radical Remission; Chris Beat Cancer. This is in addition to Anticancer sent a few years ago.
  • An example of foods that can help: shitake and maitake mushrooms; “Cruciferous” greens like kale, cabbage and bock choy; and green tea.
Food, Part 2 (and Sleeper Cells)
  • The parents of my sons’ high school cross country team have mobilized a “Meal Train” – and will deliver food to our place. A huge thank you to Eugenia Yen and Francine Wiest.
  • I feel very odd being the recipient but eyes well up thinking of the intent behind it.
  • For me, it is the best example of the hidden goodness. If any of you are movie buffs, one movie that is part of basic training worldwide for new hires going into intelligence agencies (CIA, MI5, Mossad, etc. ) is Battle for Algiers. They clarify what sleeper cells are in a terrorist or revolutionary network. I have decided just like terrorist networks have sleeper cells, goodness and sunshine has sleeper cells that spring to life in times of need.
Good Living
  • These are the standards: sleep; meditation; prayer; laughter; friendships; reflection.
Vital Signs
  • In general my blood work is holding steady. But I see that the WBC is up, as are Neutrofils and my all important Lymphocytes (they do the hard battle against disease) have fallen below the healthy range.
  • All the more reason to get into treatment today and wage battle back.
Choosing Medical Weapons
  • There are two basic approaches. “Cure” and “Treat.”
    • “Cure” means treatment intended to obliterate the cancer if all goes well. Higher dose chemo is used as these returning malignant cells survived the initial treatment 3 years ago. If you go into remission, then you can proceed as follows: extract stem cells from yourself or someone else, drop an atomic bomb sized amount of chemo to obliterate every bit of the immune system, and insert the stem cells.
    • “Treat” is to use a different category of drugs that are not chemotherapy. Think instead of how insulin treats diabetes but does not cure it.
  • I have chosen the “Treat” lane of action. All the medical innovation is here, and my hope is this buys me time as more invention occurs. It will also do less collateral damage that the Cure approach.
Sorry for the long note. Have a tremendous Thanksgiving for my US based friends.

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