Roar

Hey gang – just started cycle 3 of 4 so I am now over halfway there!  Also my tumor marker (HCG – indicator of the number of live tumor cells) is down to 864 as of yesterday!  After my last test I was a bit concerned about the pace of decline slowing down but my doc says it’s common to see a slow down in the lower numbers.  I also added some data to my nerdfest for average daily rate of decline and it actually went up a bit in the last seven days compared to the prior seven so that is also positive.  We are well on our way with good momentum but we need to get to ZERO so let’s keep the pedal to the metal! They tested my lung function yesterday and that was looking good (one of my chemo drugs, bleomycin, causes scarring in the lungs that can become problematic after a while).

I’d like to address something that has been bothering me a tad that I wanted to clarify.  One of my friends asked if I was feeling as good as this blog implies.  It’s a somewhat complicated answer.

Everything I write is real but do I omit anything?  Yes. There is no way around the fact that cancer sucks bad.  I get frustrated.  Frustrated that this has happened.  Frustrated I didn’t catch it earlier.  Frustrated our life is on pause.  I wake up in the middle of the night occasionally terrified that my life could end within a year.  I cry easily (not only about scary dark prospects of loss but also at beautiful music or moments).  The treatment, as much as I am grateful for its efficacy, also sucks.  I get pissed that this has impacted other people negatively and pulled them away from their own lives and dreams.

But here is why I don’t write a lot about this stuff explicitly: I don’t think it is helpful.  The main purpose of the blog is to keep everyone informed but it is also cultivate positivity, hope and intention to maintain the healing momentum.   To dwell on these negative feelings would be to feed them.  I am confronting and processing these feelings in my own way, with tremendous support, and I don’t feel in crisis about them.   They get fewer and farther between all of the time and are eclipsed by feelings of hope and gratitude -for the love in my life, the support, my doctors, my prospects, the lack of vomiting and nausea, and the opportunity for transformation that this illness affords.  And maybe some of the darker emotions are more present in the poems I have posted.  And maybe things will change but I wanted to essplain in case you wondered “how the f&^k can this guy be so positive?”

Now I would like to highlight 3 gifts my friend Kate has given me in the last couple months:

1) she sent me this Katy Perry song, “Roar,” early on and it has become my unofficial recovery anthem.  If you ever feel like there is something you are not sure you can accomplish it might be good to take a listen (p.s. you probably know this but this is not my regular taste in music…  …unless i am dancing):

2) she had the idea to organize a a group to walk for “Light the Night” in NYC last wednesday. With help from logistical maven Sally D, my friends and colleagues raised over $7,000 to support cancer research!  KR and I were able to join and about 20 of us walked 3 miles with blinking balloons along the Hudson river in a stream of thousands of balloon-wielding cancer warriors.  Big ups and thanks to everyone who came out – it was moving to feel so supported.

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3) she also sent me this picture (no words, just the image).  It somehow really captures how I feel a lot of the time.  Thrust into unreal bizzaro strangeland with fire and beautiful rainbows and a mission to accomplish:

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Comments

  1. love you. <3

  2. As usual everything you wrote touched and moved me. One comment triggered a thought though that I wanted to share: “I get pissed that this has impacted other people negatively and pulled them away from their own lives and dreams.” Obviously there are people like KR and others who are profoundly more affected than I am, but I suspect I speak for others when I say that the way you’re approaching this challenge has been a profoundly positive force in my life. You have inspired me to reach both deeper within myself to find what I truly value and higher to realize those aspirations. Obviously no one wants to see someone they love suffering, but please know that I at least come to your blog now to remind me of my dreams and reaffirm my commitment to them, not pull me away from them. I will always be grateful to you for that Jay. Thank you.

  3. Loved that splainin! Made me smile. Keep on truckin cuz! Love you.

  4. went to my surgeon today for my 4-month “well-visit” where I got the all-clear; had blood drawn, and have to schedule my q 6-mo MRI and q 4-mo x-ray… while it “never ends” yes, but “cancer free” has a ring to it to where I submit “q 4-mo” and “q 6-mo” find their particular attraction

    THRIVE DURING CANCER! kale shakes while you battle the shakes, baby! –khull [t-cancer survivor]

    • Great news Kevin! glad to hear you got the all-clear. Just finished the 5-day hard stuff on cycle 3 and feeling it more than 1 and 2 but not to bad. had kale in the juicer this morning! will give you a buzz soon

  5. Congrats on this milestone…Keep it up Jay!

  6. Tisha Howe says:

    You and Katie Rose are amazing as you negotiate this uncertain path. So glad you feel the cradle of love around you. So many of us thinking of you, loving you, cheering for you, and, yes, crying with you.

  7. john mccarthy says:

    Jay- I had a bout with prostate cancer earlier this year. As my treatment – radiation – began, the doctor asked me to measure my “distress” level on a scale of 1 to 10. I suddenly realized I was distressed, and rather angry, mostly about how my body was letting me down. Your blog today seems to be conveying similar thoughts. I’m now doing fine and my distress level is down to its usual zero. I’m sure the same will be true for you in just a little while. John

  8. Thanks for sharing and we continue to send our love and healing energy your way. By the way, I love the song—now when I play it, I will picture you and KR dancing in your living room! :) xoxoxo

  9. I’ve learned over time that to write well about negative feelings is not just to dwell on them but to actually live them again. Sometimes it’s worth it, but mostly not. A blog is not an obligation to share everything. What you’re crafting here is so lovely and valuable just as it is. xx

  10. patty giesecke says:

    PS……Love the great kidney function results…as it has been said….You Rock!

  11. patty giesecke says:

    Wonderful post Jay. I would tell you that when I would ask Hans what he was feeling he would reply in that oh so German ambiance ” I am not about to deal with feelings (as you know a word he is not terribly comfortable with) I am much too busy working on living…..” and say no more. We know exactly how that worked out for him. From where I am sitting, I would say what ever you are doing is working out well for you also. Keep up the good work. Can I say….I am so happy that KR will be a part of our family….as your Mom says….”She is amazing”
    Much love from ….us.

  12. focus on the cell walls and direct all conviction that way — you’ll need the same direction for the recovery from any surgery that might be expected, so keep it focused as this is a long road — eat your kale!

  13. Pure. Thank you for all of this. Sharing your energy outward to us. I LOVE this…. “cultivate positivity, hope and intention to maintain the healing momentum”. Starve the negativity…

  14. Love you Jay! I wish I had something more eloquent or uplifting, but all I can constantly think is that I love ya! I miss ya! and you are so amazing. Can’t wait to see you soon. xo

  15. Theresa Ryan says:

    I understand you are going through a gamut of feelings – emotionally, psychologically, physically – but I still love your messages of optimism, hope, and progress.

    BTW, didn’t I see you Saturday at the DU shoot?

    xot

  16. Kathy St. Vincent says:

    Bless you, Jay! Keep up the fight….we’re all pulling for you! (I love your poetry!)

  17. Thank you Jay. LOVE LOVE LOVE LOVE LOVE LOVE!!!!!!!!

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