A Big Time

weddinSummer is swinging and bursting open with dewy sweet mornings and evenings like molasses. A few weeks ago KR and I got married for realz on a day so filled with light and joy and smiles and hugs and tears that only the solstice could contain it all. It was a trifecta celebration of union, health and creation. It was a blessing of the land and the home we’ve built. It was a dance, an exhale, a whoop, a firework, a hallelujah, a chant and a party. As my friends of the Southern persuasion say: we had a big time.

One of the exercises my Chinese healer, Sat Hon, had me doing in the dark of winter and the grip of pain was to visualize the wedding day -feel the sun on my skin and imagine the feeling of it all. I would sometimes cry in the longing for it and the fear of not being able to meet my love and community there. June 21st felt like stepping into a dream except that it was beyond anything I had been able to conjure on my own. The spirit that everyone brought to the place and the sense of being so held by our community was overwhelming and my joy brimmed over in tears, song, smiles, and unprecedented dance moves.

My physical energy has been great for the last month at least. I still get tired easily and need a lot of sleep, the scars on my abdomen and back are still tender and a deep breath still brings tightness to the left side of my chest but it all gets a little better every day.

Last Monday I went into MSK for testing/scans and to meet with my oncologist. The good news is that my tumor marker remains undetectable and my CT scan shows a reduction in fluid in my abdomen (I had a lymphocele on the last scan) as well as slight shrinkage of the masses in my right lung. This is all, in fact, great news. The not-so-great news is that I am going to have a thoracotomy on my right lung. It was a hard decision to make and both my surgeon and oncologist really left it in our hands to choose after giving us all of the information and talking it through.

There are two reasons to do the surgery. There is a small chance (maybe less than 1%) that there could be some latent choriocarcinoma cells as part of the remaining masses. These cells could re-activate and are the really nasty (or at least tremendously misguided) cells that had me coughing up blood last August. There is a slightly bigger chance (3-5%) that there could be teratoma cells in those masses that may not be an issue right now but have the unfortunate tendency to transmute into genuinely ugly stuff like sarcoma in 10-15 years.

The reasons to not do the surgery include the risks of any major surgery, rare complications, the disruption of life, pain, etc. Of course last time I happened to have one of the rare complications when my left lung decided to collapse for six weeks during which time I also had a rare complication from my prior surgery when my small intestine kinked and that plumbing stopped working entirely. It was a shit show. Actually it was a no shit show. And it was also the single most miserable, painful experience I have known. However: 1) Dr. Bains removed 24 masses from my left lung and there are only 4-6 that are operable in my right lung which means the “swiss cheese” effect will be much less and a collapsed lung is much more unlikely and 2) I am now 5 months out from my abdominal surgery and the likelihood of another kink is greatly diminished.

If you do all the calculus and logic exercises the answer is clear: do the surgery. It’s not going to kill me but the cancer might. However my body, my sense memory, and my emotional self are all crying out, “no effing way! those dudes with those sharp knives in that shiny place? no mother effing way.” Understandable. And something to be honored and heard. (I have been working with someone on healing from the trauma of diagnosis and treatment and she says to always honor whatever comes up. Work to understand why it comes up. What is its intent? i.e. physical pain usually is trying to warn us something is wrong and take protective / corrective action. “Honor all of it!” she says. I like that.)

A part of me knows that I am going to do the surgery and the pathology will be negative and that will be the end of treatment. And, if there were a few misguided cells hanging around, the radiation of joy and love and light that I felt on June 21st would have flattened them anyway. I want to trust this intuition but I also don’t want take the chance of being in high dose chemo in six months or ten years and wishing I had just done the damn surgery.

On Tuesday of next week I go in for pre-surgical testing and will schedule the surgery then. I am going to try for the end of the month which will give me a few weeks to get in shape and prepare myself to go into the breach one more time. I’ll let you all know when it is so I can once more solicit your invaluable mojo and support.


6/30/14

these scans are coffee grounds
at the bottom of a cup
a handful of shells dropped
on a dirt floor

excited photons
pass through me
scatter to form images
indiscernible to me
read by oracles hidden
in darkened rooms

the white-robed priest
closes the door quietly
to deliver prophecy

his face holds no portent
of budding dark bloom

my heart exhales

the square ceiling tiles
stay in place a while longer

 

 

Comments

  1. Though any protracted engagement weighs heavier with each passing week, the camp is fortified, the soldiers are sharp. Once more unto the breach…

  2. Theresa Ryan says:

    You will be stepping into your next surgery with all of your community behind you and with you. Continue to mend. xot

  3. JaY. I’ve been sending a couple or forwarding a few of your blogs to a friend who had thyroid cancer over 10 years ago. She is superclean and healthy now but wanted to forward her this one especially.
    She told me she cried.

  4. Ann Bresnan says:

    Jay, you articulate so well your thoughts, feelings, and life happenings – good and bad. You face what is thrown at you with contemplation and courage. Am very sorry you are undergoing another surgery. To help you get through this last hurdle, you can visualize a healthy you and Katie and your lil’ bundle
    sailing through life together!! XO ann

  5. patty giesecke says:

    With you, in all ways, with love.
    The Giesecke Gang

  6. Larry Hayes says:

    Nice poem, Jay! I feel your dread of the knife and am insulted for you but in the end would likely make the same decision. Be strong and know we’re all with you and KR on this down and dirty journey back to light.

  7. Jay, we shall expect to see you jogging on the trails, behind Katie Rose, to get toughened for that surgery!
    Love & Sweat,
    Robin

  8. Sending love and light to you! xoxo Libby and family

  9. bart louwagie says:

    Love and strength to you Jay

    So greatfull to know you

  10. blessings call anytime

  11. Deanna Sue Sucsy says:

    Congratulations! My heart sings!!! You both are awesome. Lots of Love, Sue Sucsy

  12. Jane Ringer says:

    Thanks for keeping us posted and seeing both sides of surgery and decisions. It sounds like the best to do and we’ll keep our MN thoughts and healing energy flowing right to you!!!! xoxoxoxo

  13. Paisan, bummed I’m missed the wedding. It looked like an incredible day. Thinking of you as your prepare for surgery. Sending you good thoughts, vibes and frelks.

    • So lovely to see the photos of you both on that shimmering love filled day!
      When you are past the next surgery, strolling in the east village – I would love to see you pop in to once again play the piano and sing – your stunningly poetic presence- you’ve always had my total support – forever!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s