Friday, September 01, 2006

9.01.06, Deciding on Next Procedure

This is all boring material but needs to be passed on. It's all about my Wednesday doctor's appointment with Dr. Saunders to discuss a possible procedure I might undergo for pain reduction. (below)

Today has been quiet and bookish, I've been holed up trying to finish some writing. For Franky Scale everything is fine, no incident...what's the number for that? If I stick with trying to rate it based on lack of pain or other problems, which I probably should, then 7 today. Despite my use of narcotics. (below)

The Celiac Plexus: This endoscopic procedure involves the standard EUS (endoscopic ultrasound, or garden hose down the throat with a camera and a needle or two on it, shoved down into the gut or “belly” as the first doctor liked to call it) and then the injection of alcohol into the celiac plexus in order to numb or kill the related nerves. The goal is to reduce abdominal pain, and a side effect/bonus is the likelihood that I’ll be able to reduce the amount of “narcotics” I take. Less constipation results too, we hope. This was the gist of my Wednesday appointment with Dr. Saunders, although most of my time was spent with a Dr. Scanga because the former was stuck with a patient for about 45 minutes.

Curious, there was a distinctly judgmental or moralistic tone I caught during this appointment: “You’re taking a HUNDRED mg of oxycontin every day?”, bushy eyebrows raised, and you could just hear the suggestion in his voice. This was Scanga. I got the sense of being looked at askew like (a) I shouldn’t need that much medication for pain, (b) I should tough it out for odd puritanical reasons, (c) I might be faking it to try and overly enjoy the meds, or (d) who knows. I said nothing then, except when later in our consult I told them that pain management is the single key to improving the quality of my life, which is short, and something they need to consider. Don’t know why but I could only say anything indirectly at the time. The whole issue of terminal-ity hadn’t been brought up and I feel they were more uncomfortable talking about it than I. The difference between these two GI fellows and Dr. Whiting and EVERYONE at the SCCA is like night and day. The former group just doesn’t seem to get it, the latter is entirely sympathetic and would never criticize what you're doing or how you’re doing it to relieve your pain, or manage it. Why should they, you're fucking dying?

Wednesday’s boys were a little lacking, then, in their terminal bedside manner. And I learned a new angle on the use of euphemism. So many times they use is to protect the patient or themselves, to make the world sound softer, more fuzzy, to hide a procedure or fact from immediate understanding. Non-resectable, for example, means “we can’t operate”; ablation, killing some nerves and possibly reduce pain; apoptosis, the dying off of cells; etc. What I found on Wednesday was the reverse use of euphemism, that is, the deliberate non-use of a more euphemistic term to make it all sound more coarse.

At SCCA my pain meds are usual referred to by drug name, as opiates, or even opioids. The term “narcotics,” with is its potentially flashy and negative connotations we get from the news and drug wars, is rarely used. At this appointment, however, the word narcotic was used regularly. Call me paranoid, if you will, but the term was used to a specific non-euphemistic end, that’s what I sensed. You tell someone they’re using quite a lot of narcotics as opposed to quite a lot of opioids and I think a different message is conveyed.

Otherwise they seemed fine, competent (to the degree I can judge this), and possibly skilled. Risk involved is loss of feeling in the lower body, something very, very unlikely they assure me as they stress how routine this 15-minute procedure really is. In very rare cases paralysis might occur, but they dodged this question, which I asked because Whiting told me about it. (He’s far more straightforward.) Doctor #1, Scanga, was the fill-in-while-real-doctor-is-late guy who had to gather general info about me and press on my stomach while the primary GI guy or EUS specialist was busy with another patient. Doctor #2 came in only to give me a little sales pitch of why I might do the procedure; and to tell me he thinks I’m a likely candidate for it given my pain situation. It works, he says, in 70-80 percent of the patients, who will feel significant pain reduction; however, they might have to have the thing redone in three to six months time.

Time to do more homework on doctor #2 (Dr. Saunders), on the procedure, and then decide whether to do it.


david said...

Do we have a nominee for this week's P.O.S. award? I think so! But wait,late breaking news from the East Coast. I took my mother to her 'doctor' on Wednesday, for the procedure involving the changing of two insertibles. I went out for an hour, and came back to find her sitting in the waiting room near tears. Turns out, one of the implements was missing from the packet she'd been given at the place where she has to go to buy them, at CVS, but the N.P. said come back in the next week, and she'd complete the procedure. Any time. We'll get you in between other patients, she said. So we go back yesterday, and the person behind the desk has her down for 'after noon,' though it was at that moment 11:20. We had called and agreed it would be 'between 11 and 11:30,' but the person behind the desk wouldn't hear of it. So we decided to wait, my mother there in the waiting room, while I decided to go out and catch my breath, I was mad enough. On the way back up in the elvevator, I chatted with an older guy on his way to X-rays, down the other hall on Floor 3. I got to where my mother was waiting, and she'd gone in. So I waited, and while waiting, the guy from the elevator comes in and asks, can he get an x-ray. The lab was closed, he says, but they told him to go down the hall, maybe they could do it there. Well, we don't do x-rays, was the response. And the lab's been closed today and yesterday for staff training, she goes on to add. Mr. Elevator did not go ballistic, as somebody less mature might have, just said he'd come back Tuesday after Labor Day.
Whaddaya do, though, when it's all there on the line and the retards are switching linguistic codes to convey their disapproval? I say they win the P.o.S.! Hands down. Or up.

MACHINE said...

Dear Mr. Scott:

Thought you would like this one; came across it years ago during my infamous "back to school" days under the caring yet watchful eye of Yi Songsaengnim at the Kim Young Sam School of Literature and Healing Arts.

The more I read it, the more I realize that the "hard dry substance" is not as morose as Zagajewski no doubt intended...but rather, I see this blog and your words that linger here as that engraving of truth...So please take what follows in more of a positive and uplifting manner (per your personality) than its tone initially suggests, as I for one do not intend to let much dissolve...Enough of my blathering goddamnit I've probably ruined the moment already...

Don't allow the lucid moment to dissolve
Let the radiant thought last in stillness
though the page is almost filled and the flame flickers
We haven't risen yet to the level of ourselves
Knowledge grows slowly like a wisdom tooth
The stature of a man is still notched
high up on a white door

From far off, the joyful voice of a trumpet
and of a song rolled up like a cat
What passes doesn't fall into a void
A stoker is still feeding coal into the fire
Don't allow the lucid moment to dissolve
On a hard dry substance
you have to engrave the truth

Don't Allow The Lucid Moment To Dissolve
Adam Zagajewski

Slarry said...

Sat. September 2, 2006

Hey Mr. Jones:

The second comment, the words and feelings
they evoke, are as touching as they are eloquent
and beautiful. Just lovely. Thank you ..

My comment today, coming from a different place
and space. Almost hessitate to post it.

Just checking in to see if you received Mom’s special cookies. Did they arrive intact and still edible? Hope so.

Other than that, I decided to share my feelings and thoughts regarding your Friday Blog, the one about the possible procedure and the GI specialists. Please know I’m using the word “specialists” loosely.

I don’t know very much about the procedure you are considering, but I’ll research it to the best of my ability.

However, what I do know from working with cancer patients every day for somewhere around 20 years is the thing they know they never have to worry about is getting their pain medication and getting any and all assistance they need in managing and diminishing their pain. No questions asked, except how can we help and what do we need to do to help you.

Currently I am involved in the care of 7 people with cancer. Though their plight is terrifying, horrific and painful, none of them are diagnosed with Pancreatic Cancer. Working in Health Care and having Hospice as one of my specific specialties, Pancreatic Cancer specifically is universally known as one the most, if not the most, painful of all cancers.

I am not saying this to cause alarm or to diminish other people who are suffering with cancer and having to manage their pain. It is an annoying yet necessary juggling act to be sure. The medication is there to help people suffering from cancer. In this case, I take it more personally because it involves you and your quality of life. If you haven’t noticed, I am fairly fond of you.

I know you know so much more about this than I do, but it does beg the question of the two GI specialists and what I consider to be insensitive, unprofessional (raised eyebrows), non empathetic and just general poopy behavior. Whatever ... (and you know what Franky said about the word “whatever”). If I remember correctly, it had to do with “THE BIRD.”

For you to have to question, even for one second, possibly feel paranoid or at least uncomfortable in any way because of the questions asked or the way these two goobs questioned your medication, especially since it is overseen by your oncologist, makes me sick. I dare them to try and walk in your shoes for 5 minutes.

All of my current clients are on “narcotics” or opiates--their medication and dosage is never
questioned and none of them have the type of cancer you have and none of them are currently considered terminal. Not only do they take their oral contins and codones--
(Oxy and/ or hydro), most of them are on a morphine patch as well. Some even IVs.

So to Mr. Tweeddle Dee and Mr. Tweeddle Dum, I believe you two deserve the POS award and the “I WANT TO POOP ON YOU “ award as well (thanks Franky and Triumph).

I don’’t think I like them. Fuzzy, furry eyebrows and all.

Hopefully, someone will comment on this procedure and you can gather more information and hopefully the Seattle Cancer Center and Dr. Whiting, caring and knowledgeable medical people, can help you find other GI specialists, if you choose the procedure as a good choice for you. But those other guys bug me.

Hope you are having a decent and productive day. It is beautiful here today---The OPEN HOUSE, sub par. About as effective as the two “specialists” you saw. I hesitate to even make comparisons like that even in a joking manner because I feel so sensitive about your care.

Eat some of Nade’s cookies.

We miss you Scott and love you even more. Keep strong. We will continue to send our best and strongest vibes and thoughts.

All my love,