Tuesday, August 16, 2011

Medicine as algebra

Interesting day. I met with a woman at CTRC (Cancer Therapy & Research Center) about the money dance.
A couple of hours of great conversation & enough signatures to give me flashbacks of signing a mortgage, I have a mixed green salad of state & federal dollars that will cover much of the upcoming experiences, financially, & let me pay the rest back at a reasonable rate.
That's a relief!

But the most fascinating part of the day was a phone call I got from the surgeon's team~~the surgeon that I meet with tomorrow, mind you. A very sweet young man said "We have your appointment with the radiation oncologist set for such & such day and time, will that work for you?
I let the pregnant pause hang in the air that extra telling moment, & said"No. No, that won't work. I won't need radiation, because I am not having a lumpectomy. I will be talking to him tomorrow about a mastectomy. So take that appointment off the books, thank you."
He was so sweet & sincere when he said "Well, you just call us back after you two talk & we'll make a new appointment."

*sigh* I let it go with him, but wow. That is stunning!
Here's what I see happening so far in this journey:
Abnormal mammogram: book biopsy & push lumpectomy.
Very suspicious biopsy: immediately talk  about lumpectomy. (though, as a woman, she let it go the minute I said no way)
Meeting with the "buffer doctor": very strongly advocate for lumpectomy & against mastectomy.
Before the meeting with the surgeon: call to *let me know about my appointment with the oncology radiologist* for after the lumpectomy.

Notice how I, the patient, the actual woman with cancer, the actual woman who will live the rest of my life with the bodily decisions made around this, am not even present in the equation???

This is stunning, but I don't think many, or possibly any, breast cancer patients notice this.
There are a number of reasons for this:
Most people are terrified of the idea of receiving a cancer diagnosis, & go into a frozen shock/trauma response if they get one.
I was with my fiance when he got his, and he called it "going glassed". He freaked out & froze to the extent that he asked me later, repeatedly, what had been said & discussed.
So, what happens if a woman is alone when those discussions happen, as I was?
Well, if she goes into shock/trauma, she won't remember the details (IF any were given!) &, probably will stay in that frozen state for a while, & will be *bingo!* a very compliant patient.

Also, most people only interact with doctors throughout their lives when they, or a loved one, is sick & vulnerable. So they are never fully "on their game" when communicating with doctors.
Compound that if they have subconscious programs running about deferring to doctors, "doctor knows best", "don't question the doctor" etc...

Most people have no knowledge of their bodies, of how things work in the body, and of anatomical language.So when a doctor starts explaining things to you, most people are lost by the end of the 6th sentence. Because things are critical, & moving so fast, & they think they wouldn't understand it even if they made the doctor repeat it, they just let the sea of words roll over them & nod.
(I MUST interject here: please remember that a doctor, surgeon etc IS YOUR EMPLOYEE. A highly trained employee, with exceedingly specialized knowledge, but they work for YOU!
Even if insurance is paying, they still wouldn't have a job if they did not have patients to practice on.
And *do* take note of that phrase!)

And, last, but not least, most people are absolutely infused with the beliefs about cancer (what??? this is a uniquely modern, and Western perpective, not "the truth"), about "what you should do if you have cancer" & "what the statistical rates of survival are".
I must say about this last part: a pox upon this stuff. Wait until the drought is over & burn all of this rubbish out back while you have a beer!

Regarding the other three aspects, by education, 23 years of working with chronic pain patients & acute soft tissue injury in holistic health care, & grace, I have none of this running.

I am grateful for that, but here's the thing: with the exception of Dr. Dakini, these physicians were sitting in front of me, watching me not freeze or "glass", listening to me explain my understanding, & asking good questions. They also listened to me say *what I want the outcome for my body to be*, but because it doesn't fit the algebra problem of "treating cancer" that they already have "solved" on the chalk board: they literally don't hear me!
Or see me. (Dr. Bob, who kept condescendingly nodding when I was calmly assuring him that I would not be freaking out between appointments)

If you cannot be superimposed on their chalk board equations of whatever you are there for, they will probably keep pointing to how the equations "always" give the answer they are espousing.

Screw the eraser, my loves! Get a power washer & clean that board!!
Make the physician talk to YOU, listen to YOU & figure out how their training can best serve your needs, not the needs of some bunch of statistics & preconceptions!!
And there is almost always more than one person who can assist you with their medical knowledge; do not (I repeat do not!) be afraid to ask for another doctor. He or she will continue practicing medicine for their whole career, but this is the ONLY opportunity you have to participate in this particular healing journey!
Yep. It *is* all about you! ';-)

So. Tomorrow the surgeon.
I have decided to go in with an attitude free of preconceptions (of him) & see if I can support him in doing the same.

Wiggle your fingers in my general direction in a magical way.
This will be interesting.


d smith kaich jones said...

waving my magic wand your way.

wonderfully told, my dear. i may have mentioned, or not, that my "bestie" has dealt with 3 bouts of malt lymphoma and has these same stories. of being ignored by nurses when she tells them i can't drink that whole glass of stuff or that needle is gonna be too big for me - you need to get a child's iv thing. it always amazes us.

sending that magic your way, but, really, i think you got plenty of your own.


mrs mediocrity said...

i am wiggling, i am wiggling!

i know if which you speak, in a different context but the same idea, they don't listen to you, don't see you as an individual and you have to stand up for yourself.

thinking of you today, sending hugs and hoping that he turns out to be the exception and listens and supports whatever decision you choose to make.


Jean J. said...

Yes, very well said Skye...and *sigh* true. I am wishing and hoping for peace and calm, peace and calm, peace and calm for you. I love you girl....xoxo

Frank said...

I have had simple tasks (errands) today and a bit of volunteering, so I have had many moments throughout the day of sending you Light, sending you Healing, of sending you Love . . . . .

Amy said...

Yes. I have seen my mother go through this kind of thing--she actually did have to fire her doctor because the doctor vehemently refused to offer her any options for treatment and would not listen at all to her desires for her own body. It is so mind-bogglingly sad and bizarre. I am glad that you are so knowledgeable that you can stand up to this type of treatment.