Ooooof

Wow – what a week!  A lot of ups and downs.  We have been home since Wednesday night and the surgery recovery continues. A week ago at about this time I was coming in and out of consciousness in the the post-surgery recovery room after having just been stapled back up. The surgery was successful and while I lost a fair amount of blood I didn’t need a transfusion. I don’t remember much of the rest of that day.

The Incision

The Incision

The following days in the hospital were marked by trying to walk, slowly, as much as possible (I usually got in over a mile, or 14 laps); trying to breath deeply into a constricted diaphragm and a girdle holding my abdomen in; frequent visits from nurses, doctors, physical therapists, breathing specialists and nutritionists; a slow progression to solid foods (ice chips started 3 days after surgery, next day clear liquids, next day non-fat solids); and my constant companion, the pain.

The pain has been no joke. There is the pain of the incision itself through skin, connective tissue and muscle; and then the pain of the bruised and cut innards which flares up in areas when some liquid or gas moves through. It feels like having been kicked in the belly by an elephant while also having a couple of tiny Edward Scissorhands dancing through your guts. The pain meds help for sure, especially when not moving, but it’s a little like saying a garbage bag is effective rainwear.

The staff were excellent at their jobs and very caring in their demeanor. And I was lucky enough to have either my sister or KR at the hospital with me at all times. They were incredible in their soft and omnipresent care (KR commuting 2 hours to teach and sleeping on the chair-bed in the hospital room). I made friends with Vladimir, the PHD in Applied Math turned medical statistician, who just had his kidney out, and with whom I would race around the floor (he usually won) while inflicting my terrible Russian. The visits from friends and family always boosted my spirit and brought light and color to the room.

Today the pain is much better. My scrotum is the size of a large grapefruit from edema which is painful and awkward in it’s own rite. That should go away in the next couple weeks as the lymph system figures out new drainage paths.

First Solid Meal After a Week - Rye Bread & Egg Whites

First Solid Meal After a Week – Rye Bread & Egg Whites

I feel I was as calm and prepared as I could have been going into the surgery. But I was not prepared for the last week. After having just recovered my energy from chemo and starting to feel good, I was back on the floor. And this time I had these surges of anger. I don’t fully understand it but since I woke up after surgery I have been angry and each pang and ache seems to fuel it. There are times when all I want to do is smash something and yell out (although that would really hurt :). I am not sure if it is being pissed at the cancer, at myself for somehow allowing this all to happen, some animal reaction to being cut open, or a combination thereof. I am breathing through it and trying to channel that energy into healing activities like getting out of bed and walking.

I’ll meet with the surgeon and my oncologist in a couple weeks to see what’s next.  The full pathology report came in today and all of my nodes were either benign or necrotic/dead (awesome) and my tumor marker was 6.9 on Wednesday (much better). The rate of decline of the marker spiked after surgery as expected but it is still less than the chemical half-life of HCG. This basically means that there may be HCG coming from something else – the metastases in my lungs. These tumors may all be dead and it may just be further encapsulation. It’s not clear what lies ahead – ideally nothing but it may be more chemo (worst case), or surgery on one or both lungs.

I remain deeply grateful for all of the support and love from you all. And for the fortuitous and positive turns my healing path has taken since this all began.

The shot below is from Wednesday night as I was leaving the hospital with my new squeeze/most smiling nurse Charmaine who described to me in detail the epic party she had attended on Saturday night (the amazing unicorn  slippers are from my work buddies). Let’s just leave this pain in the past and party on.

Comments

  1. reeve schley says:

    Jay your story is amazing. Thanks for sharing and prayers for a healthy recovery!

  2. Darby Ringer says:

    Hi Jay,
    I wish you the best for your healing. You are very brave.
    Sending you love and healing light,
    Darby

  3. Jj you are the light. I’m so proud of you. xo

  4. I guess that’s the end of your crop top modeling career! American Apparel is going to need a new model.

    Sending good vibes your way, Paisan.

  5. Guy Engelman says:

    Hi Jay thinking of you and sending good vibes for a smooth recovery. Much love and good thoughts!

  6. Dr. Robin Lester says:

    Jay,

    We’ll be looking for unicorn prints in the snow every morning in the woods!

    With love,

    Helen & Robin

  7. Jonathan Richards says:

    Jay — what an ordeal. For a historical perspective, see the classic 1965 David Levine caricature of Lyndon Johnson showing his scar. http://www.nytimes.com/2008/10/13/arts/13conn.html?_r=0.
    Hang in there, you’re looking great.

  8. Sebastian says:

    Stay strong brother. As Jeni said, battling cancer is a marathon, not a sprint. The surgery sounds like mile 22, when it’s easy to hit a wall, but the real picture is how far you’ve come and the finish line is getting closer. Love you bro. You are an inspiration to us all.

  9. Brian Berlandi says:

    Keep up the good work, brother. You’re doing an awesome job.

  10. Kirt Benedict says:

    Wow Jay. I don’t know what to say…I’m sure all the good vibes from friends help, but I’m sure at other times it does not do s**t. Know I’m thinking of you in those times as well…

  11. Wow what a week! Keep on healing that was MAJOR surgery! You are amazing!!! Sending love to you and Katie Rose! xoxoxoxo

  12. Theresa Ryan says:

    Glad you’re home, good news about your lymph nodes. Should be interesting to see how your anger manifests itself in your amazing poetry, which has been serene, contemplative, and hopeful up to now. Wishing you a short path to pain free status. xot

  13. Tisha Howe says:

    A big hug for you! Oops. no. That would hurt. Instead, we send our love and light, and big wishes for no sneezes.

  14. Great to hear your voice again! Keep on truckin’

  15. Wow Jay! Your strength is inspirational. As our Great-Grandpa Ringer said,”keep everlastingly at it!”
    Much love and healing energy your way.

  16. Hey thanks for the great update! Love the pic with the fun slippers and your big smile most especially. We continue to send you wishes for a gentle and speedy recovery.

  17. patty giesecke says:

    What great news from the lymphatic system……hooray! The pain is humbling and the anger…..normal. “One day at a time’ dear heart. We send love.

  18. Great to hear that you are back home. Recovery is not an easy road after such a huge surgery but it sounds like you are well on your way!!

  19. Ann Bresnan says:

    What a guy! xo

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