Wednesday, November 30, 2011

Is there an oncology end-of-the-month bonus, or something?

That was the question a friend of mine asked today over lunch after I told him about my breast surgeon check up this morning.

As usual, a doctor in residency came in to do the pre-talk and check in before I saw my surgeon.
I filled him in with my background and all the details with my meeting with the radiation oncologist. I quoted the numbers of the faulty study that led both of us to the conclusion that radiation was not needed, told him why redoing the surgery was not an option for me, and made sure he knew that I had no "attitude" about cancer treatment, but that I felt the tumor board should be made aware of the study in question, since the assertion that a woman had a 25% chance of reoccurance if there were minimal clear borders on a full mastectomy with DCIS was just not true.
He tried to defend the whole paradigm, but I was sweetly & calmly unmoved.

A few minutes later, when my surgeon came in, he had obviously been fully briefed on the conversation I had just had with his colleague and may I be so bold as to say he was not pleased.
He greeted me, got the Reader's Digest version from me and then launched into a rapid fire overview of the four major studies that they use for statistical verification.
He was tossing out the names and case numbers of the study (I was internally impressed that he had all of that at his mental fingertips) but at the first deep breath I gently inserted "But two of those studies are dealing with lumpectomies, so they are not applicable to me."
(You need to put on your "fast listening ears" when doctors do that. I always carry a pair with me.)

He didn't miss a beat or have any visible reaction, but I could feel a definite shift in his energy.
Let's just say I won't be getting a Christmas gift basket this year...

On to tactic #2.
He asked for a detailed recapitulation of my conversation with the radiation oncologist.
I did, word for word, practically.
My surgeon then began what can only be described as a sales pitch for radiation, becoming more and more insistant. I wasn't irritated but I wasn't changing my stance either.
Then he brought out the big guns.
He claimed that the radiation oncologist had told him that I was a good candidate for undergoing treatment.
I slightly tipped my head to one side and asked calmly "Really? Why would he say such totally different things to you and I?"
To which he said, ever so slightly raising his tone, "I don't know. I will call him right now." and left the room.

I was smiling at FaceBook status updates when he returned and without batting an eye backpedalled on the whole thing.
Yep. The radiologist had told him (&, props to my surgeon,that he admitted it) that it being on the left, there were serious cardiac considerations, that the study was a "soft study" (so diplomatic!) and that the borders were probably fine given that it was DCIS and not a tumor.

But he wasn't through yet!
There was a new medication that studies have shown (blah blah blah) and if it were he or a family member he would take it (Charlie Brown's teacher's voice) and it was called (whatever) and would I be interested? It is a five year protocol...At which point I interrupted: "Oh. So it's a new type of Tamoxifen or Arimidex-like drug?"
"Thanks, no."
He tried three (!!) more times and I just kept saying "I'm not so interested.~~Nope, thanks.~~Thank you, no.", until, finally, which just ever so slightly the disbelief creeping into his voice he asked "Well, what are you planning on doing regarding the risk?"
I smiled and said "I will continue to boost my immune system and get on with my life."

I guess they don't hear that very often...

So, he made a check up appointment for three months and reminded me that if I changed my mind about the drug I could call him any time.

But my style is so very much more sitting across from Morpheus, wearing a long leather duster, and gulping the blue pill as the lightening flashes.

Monday, November 28, 2011

It was the "Skye Has No Limit Benefit Concert". Indeed.

Yesterday was quite the day. I had packed the car the night before with the quilt and dozens of items for the silent auction. I went to Celebration Circle and enjoyed a wonderful time with everyone then helped set up for my fundraiser concert.

Two friends of mine from a cooking group that 8 or 9 of us have had together for years brought what looked to me like hundreds of cookies (I don't think I am exaggerating a bit) of about a dozen varieties, along with bags of trail mix and coffee for a delicious bake sale.
We had twenty four feet of table space to accommodate all of the silent auction items and my quilt which was being raffled off was displayed on stage.
People began arriving about fifteen minutes before the show and soon my niece, who was performing, had to abdicate her post at the front door.
I took over because it was the most joyous and energizing thing in the world to greet person after person who had come to support and love me. A reunion and the sweetest party ever.

The music was phenomenal! Rudi Harst and the Circle Band were absolutely electric, Sarah Bading's powerful voice was awe inspiring (her version of Leonard Cohen's Hallelujah brought me to tears) and Dorothy Sapyta sang with a passion that radiated from her.

Rudi reminded everyone of the essential truths of our wholeness and unlimited Beingness, and then had everyone there turn their attention to me, asking them to see me as whole and healed.

I have been in the midst of some amazing energy fields in my brief 52 years, but I have never felt the power of that kind of clear intent being held for me by so many.

I came up to say a few words, in brief expressing my deep gratitude for this journey with DCIS & all that it has forwarded in my life and in the lives of others who have shared their experience with me.
I know that to some it may sound trite or heretical, but I wouldn't trade this walk for anything.
I thanked people by name and by functions in my life, and in that day, and soaked in the faces out in the house. (we were in a theater, my old stomping grounds for many decades)

I drew the name for the quilt which went to a dear friend I have known for over a decade.

What I am seeing awaken within me is a deeper commitment to community.
I am definitely in a service to humanity lifetime, but I have been very much a hermit when not in service.
The experience of allowing myself to receive such an outpouring of help and support by so many calls me to be of service in group settings now, as well as the one-on-one work that comprises most of my life.
There is a power in the flow of being together that I have never had an understanding of before yesterday.

I know. I know. But I am a slow study.

Today I went for my third fill in the expander and am beginning to look more like myself. (At 640 cc's...)
The plastic surgeon wants to do one more fill before surgery but I am going to talk to him about size differentials and weight loss, as I hope *ahem* plan to begin actually doing something physical on a regular basis next year.
Two decades of not doing so is quite enough, thank you.

I am so grateful. So very grateful.
My heart chakra feels like a Macy's Day parade balloon, bouncing and waving 16 stories tall.

Sunday, November 20, 2011

Shaking the Etch-a-Sketch

Or some variation thereof...
I have had so many people in the last six weeks say to me that I look so much clearer, vibrant, at ease, happy. What I have realized with each person who expresses something along those lines, is that my body was working so hard to contain the process that was happening in my left breast. Now that the DCIS (I think of it, actually, as the comedonecrosis~~ the tissue inside the ducts beginning to die~~ that was the metabolic rock of Sysiphus) is gone I have/ am more of my own essential energy.
Even through the lingering fatigue from the antibiotics is fading, but still present,, I can feel the truth in this, and I am grateful to this beatiful body of mine.

Two weeks ago my friend came out to my house to take my own personal SCAR Project-like photograph.
It was a very easy and warm experience. When she e-mailed me the photos I must have spent an hour looking and re-looking at every shot and angle...
I love the images of the scar, the new colorations, the odd rearrangings of the tissue due to the cellulitis, and also, I must confess. the whole body images that showed me, body and face, subject to the whims of gravity and time.
What is not beautiful to our culture is so beautiful simply as manifestation.

At a party last night I was telling this story to a friend I've known for 26 years, and we laughed out loud (and repeatedly) at what happens to bodies with age, how we perceive that, and how we both, as artists and as feminist women, shrug.
At the end of the day, what else can one do? (and yet how we are encouraged to so profoundly do anything, anything to keep that from happening)
Let age happen. I will embrace every chapter and verse.

Earlier this week I went in for the second fill on my expander.
Since the first fill happened under anesthesia, and since I had seen every woman who spoke to the process in blogs use words in the flavor of "uncomfortable" and "painful, but woth it in the end", I wasn't sure what to expect.
I went in without any trepidation. While explaining the procedure the nurse cautioned against possible pain, aches, and, because of the distortion due to the inflammation I had, she said the expander might have folded onto a nerve. If so, when it was expanded  and the pressure was shifted, I might feel nerve pain (burning, shooting, stabbing, electrical) that may or may not go away.
I've been a chronic pain patient three times, so pain doesn't scare me, and I know for a fact that the "unhealable" can be healed, so I just nodded without much reaction.

As always, the procedures fascinate me, and this was no different.
They brought in a bag of saline & two very large syringes and filled them to the brim.
Then the nurse found the port in the expander, made for receiving more fluid, with her "mini stud finder", and marked the spot with a purple X.
("When I am old I shall wear purple...")
Then the doctor put the needle in the center of the X and guided it through my pectoralis (chest muscle) to the port below  and slowly pushed the contents of both syringes, another 120 cc's, into my expander.
I thought that having to go through my pec might be painful, but it's a thin muscle and the injection was so gently inserted that it was nothing after the first prick of entry.
There was no aching or pain during the fill nor in the days after.

I came straight back to work and dove into a very full schedule of bodywork.
I never even needed an aspirin.

In two weeks I will return for another fill and we will evaluate to see if I feel that it is up to my size yet.
Then we will schedule the surgery.

In the meantime, a group of wonderful humans have arranged for a benefit concert to be held for me a week from today.
Two hours of upbeat music my Rudi Harst and the Circle Band and the bluesy brilliant voice of my niece, Sarah Bading, to raise money to help see me through the (second) month I will have to take off after the (second) surgery.
We are also having a raffle, with many wonderful gifts to be received, including a quilt made by me.
I am more grateful than I can find language for that so many hearts and hands are lifting me up, over and over again, on this journey.

The present moment national news is very much (and rightfully so!) focused on the Occupy movement, which originally began as the Occupy Wall Street movement and has spread globally.
I follow it closely and have (as most do) my very definite opinions about it, but there are a few I know who have used their words to make a larger, deeper call.
I echo, and expand, on that.

Occupy your heart.
Occupy your body as a radiant co-creator.
Occupy every moment with love.

Thank you all for Occupying this journey with me.

Saturday, November 5, 2011

The bell without a clapper swings in silence

I feel that I am moving into a great inner (and probably outer) silence.
I am witnessing conversations that are happening in such volume, on so many different fronts, that while I understand them, and have compassion, I am struck dumb...

From within the cancer survivor/ still in the midst of the journey with cancer community, on a blog a few days ago the women who wrote the article made a statement "There are three emotions that every cancer patient experiences constantly: fear, anger and shame."
There was a barrage of dozens of comments, all (all!) agreeing with her and elaborating on the theme.
Thus began my being struck dumb.
I understand in the beginning, and for a good way through the journey fear would spontaneously arise; fear of dying, fear of pain and suffering, fear of disfiguration.
And anger seems to be the other side of the fear coin, in most human experiences.

Personally, when fear arises in me, I very quickly  go to a "What's up with that?" place.
What, exactly, am I fearing and why?
Because this has been a choice & a practice that I have cultivated for decades, I am used to going to the edge of the cliff & peering over.
I dissect & hold up to the light every spooky story the mind can churn out, and in the end they are all dust.
Even more than that, what I have noticed is that when we stay in fear (or feed fear) it is because we don't actually believe what we say we believe...
If we actually believed in heavan or in reincarnation, what is there to fear? We change shape, basically, and then all is well.
But if we stay in deep fear then, plainly, the internalized belief seems to be "It's just me, here. *I've* got to figure this out and power my way through to surviving, otherwise...otherwise..."
*the heart beats ever faster & breaths grow rapid and shallow*
And, as I see it, because our society at large, including the major religions, have no construct for going deeply within, nor do we have tools to deconstruct these things.
We try to dismantle them cognitively, usually with limited success, as those feelings don't arise from the same place within that cognitive thought arises, or we ask whoever we direct prayer to to remove them. Which often helps, but I know many people who pray for a release of this or that, but don't participate in their own release, and the praying doesn;t seem to help all that much, though they pray with great regularity and sincerity.

So (and please do let me know if I am in the midst of a blind spot, here) we fear death because at the core of it we really believe we are *this*; so if *this* form dies, then "what happens to me?!"
We fear disfigurement because we feel that we must be and/or should be "normal" as me and my society define it.
And we fear pain...I don't really know about this one; it is such a tangle...
Some of that is bodily self preservation, but not at the heart of it, because the body only lives in present time. When there is no actual suffering (physically) yet, but I am suffering as I imagine my pain, or remember my pain, or the pain of another...
Personally, I would begin exploring so as to dismantle the belief(s).
But here are dozens, perhaps hundreds or thousands of people who don't know that this can be done, nor how to do it, and in their innocence and shared experiences, they support each other in a trifecta of Fear Anger Shame.

Shame is something, really, that is an inner response to something we have done, yes? My own activity.
Shame that we have one breast, or a face filled with burn scars, or a deformed spine and limbs, is staying in bondage to an idea that "I should be different." (because I am not acceptable in the state of one breastedness, or scarredness or crippledness...)

One of my teachers said that suffering at its core is the belief that "What is happening should not be happening."

How can the body heal in the midst of that inner state?

I saw another conversation taking place on a forum of those that had loved ones die of cancer.
I am in this club, also, as I took care of my fiance in 2007 as he went through chemo, radiation, surgery, metastesis and death.
The shared consensus there, that was reiterated like a mantra back and forth was "I hate cancer."
I understand. I do. It is a damn hard walk in many ways.
It is like having a hurricane destroy your home and then investing increasing amounts of energy in "I hate hurricanes.", instead of healing & releasing the loss the hurricane manifested.

Hurricanes just are. They always have been an aspect of weather patterns.
Cancer just is. It is increasing as the toxicity of the world increases, but cancer is a metabolic process that has been around for a long time.
So, ok,  for a while after it's over, anger/fear that takes the form of hatred is understandable.
But empowering it by finding consensus will not set you free to find peace.
And feeding hatred in this particular case also seems to feed staying in the painful in between state of saying "They should not have had the experience they had."

But they had it. There it is.
And, personally, I see things from a spiritual perspective that recognizes what is happening here in 3-D Land is *so* not the entirety of what any Being is doing. And since I cannot speak to the greater design, I simply trust it.

These are my perspectives, and I know that not everyone resonates with them.
And I have such deep compassion for the pain I see and hear in both communities, but I don't feel like I can offer any perspective in the midst of those conversations.
It would be an intrusion. So I stay silent.

I wish there was some way that I could ease even a micron of the pain there.
But all I can do is witness, and honor, silently.

May all Beings find peace.
May all Beings find release from pain and suffering.
May all Beings experience their essential radiance and the radiance of All That Is.