Feb 21, 2015: Post-surgery update, and next steps

A lot has happened since my last update on February 6th, and there is a lot coming up in the next two weeks.  I’m writing with another brief update.

To begin, I underwent the “POEM” achalasia surgery on February 9th, as planned.  This was undertaken to relieve the hallmark symptom of achalasia, which is difficulty swallowing due to constriction of the sphincter between the esophagus and stomach.  The surgery itself went well, but it was exhausting and the recovery has been more difficult and longer than expected.  I am still regaining my strength.  The swallowing symptoms — while definitely improved — are taking time to resolve as well.

Since coming out of the surgery, I’ve also had some very difficult, recurrent bone pain, particularly in several distinct skeletal sites (especially the lumbosacral area) which has puzzled me and my physicians.  It may represent tumor progression in these particular areas, or an unusual interaction with the general anesthesia, a combination of both, or something as of yet undetermined.  It is disturbing not to know.  However, I am very blessed to have the guidance of a wonderful palliative care/pain medicine specialist — Dr. Beth Mazzola — and she has been a God-send in helping me get the bone pain under control.   This is finally happening.   It has required taking very high doses of narcotics — which have their own unique array of unpleasant side effects — but there has definitely been improvement in the past few days.

In the midst of this, there has been one extremely positive development.  This past Tuesday (February 18th), I had a follow up MRI of my brain.  This was done to assess the effects of the stereotactic radiation I received this past November, as treatment for the very scary intracranial lesion involving the skull and underlying dura that was originally discovered last October.  Remarkably, the dura lesion was essentially completely resolved.  There are also no new lesions noted anywhere in the brain.  It is hard to overstate how positive and important this result is.  At the least, it opens the doorway for me to continue pursuing additional treatment options for the cancer as a whole.

As I’ve mentioned before, the treatment options available to me at this point are, unfortunately, limited — and it is not clear at all which one will be the best and most accessible next choice for me.  As a next step in trying to determine this, this coming Monday (February 23rd), I will undergo CT scans of the head, chest, abdomen and pelvis.  These scans will give a high-level overview of what is happening with the disease throughout my body, including whether or not there might be a bony site that needs radiation treatment.  The scans will also be important in determining my eligibility for potential enrollment in several clinical trials that my consulting physician at the University of Pittsburgh Hillman Cancer Center — Dr. Hussein Tawbi — is encouraging me to consider.

The trials he is proposing are complex and involve cutting-edge targeted therapies.   One involves a drug that can unleash the body’s immune system to more actively fight the disease.   The other two trials involve different drugs that specifically target an unusual gene mutation which was found to be present in my own cancer genome sequencing, performed in November 2013.  Each of these different trials have stringent eligibility criteria and unique logistical requirements, and each of the drugs involved have their own spectrum of side effects.  My eligibility for the trials is still uncertain, and I am not sure about which I would choose — if offered.

I will learn more about all of this when I return to see Dr. Tawbi in Pittsburgh on Tuesday, March 3rd — if I am strong enough by then to make the trip.   If I cannot participate in any of the trials, or feel that they are just not right for me — for whatever reason — I will have to make a decision about whether or not to continue on with more conventional chemotherapy treatments.   These choices are also not easy or clear at all.  I will just have to cross those bridges when I get to them.

In the meantime, my plate remains very full with continuing to heal and recover from the recent surgery; continuing to manage the bone pain I am experiencing; going through with the CT scans scheduled for Monday (February 23rd); and preparing for the trip back to Pittsburgh.  I also continue to do everything else I can to help myself get well, as much and as often as I can in the midst of this whirlwind.

As always, the loving presence and support of my beloved Kristina makes all the difference in the world.  It is hard to imagine walking this difficult path without her love and support.  It is also wonderful to have her mom, Jeanne Holmes-Buttner, visiting us for four days from her home in Florida.

The kind and incredibly beautiful comments and posts from so many of you also remain a great blessing for me.  Managing everything required to walk this path (and there is so much more I could say about it all ….) is not only exhausting, but extremely time consuming as well.  Staying in touch via the blog means a great deal.  Thank you again for taking the time to read the blog, and for staying connected as you are able.

With much love,

Jeremy

30 thoughts on “Feb 21, 2015: Post-surgery update, and next steps

  1. Jane Bialosky

    Dear Jeremy,
    Your courage and scientific objectivity are stunning. With every blog, you are teaching us. Thank you for letting us come with you on your journey, a journey which we pray will one day not have to be taken. We are praying that the pain will soon be under control and the therapies will bring the same positive results as they have for the brain. With all best wishes with all our hearts, Jane and Richard Bialosky

    Reply
  2. Amara Geffen

    Dearest brother and sister/Kristina….you are both in my prayers and visions for the future. I wish I could be in Boulder with you and meet Kristina’s mother…I sense that some psychic loop would be closed through this (re: Dita-ma and the whole aging with Alzhiemer’s . But I trust that someday the moment will open and we will all be together. I hope this can happen…. In the meantime I look forward to seeing you and Kristina in Pittsburgh week after next. I will visualize positive outcomes here all around. Praying for the future for all of us. Someday I hope you guys can be here with Satchi, Jed and me – savoring in the beauty of this landscape and the healing energies of our land/home. We send you our finest love.
    AmaraSatchiJed

    Reply
  3. Sandy Sela-Smith

    Jeremy,

    Thank you for the update and the information it provides. My thoughts and heart-prayers remain with you, as they always are, and I visualize healing continuing to bring you to full health. You will not be alone during the scans this next week or in your travel to Pittsburgh should you decide to go. There are so many who are with you in love and in spirit as you move through this phase of your journey.

    Stay warm as the snow continues to fall this weekend.

    Love, Sandy

    Reply
  4. Redwing

    As my dear friend and teacher Sylvia Boorstein reminded me so many times during my treatment,
    “May I meet this moment fully. May I meet it as a friend”

    Seems you are doing this.
    The will to live is awe-inspiring
    Blessings to you.
    Redwing

    Reply
  5. Brad

    I’m so glad to hear that you got some good news Jeremy. I pray that more good news will be to come. I appreciate your openness and vulnerability in sharing about your journey. Blessings to you.

    Reply
  6. Tirzah Firestone

    Jeremy and Kristina,
    This is hard stuff you are navigating. David and I are with you in prayer.
    May the CTscan on the 23rd bring reassuring news.
    Thinking of you two beautiful beings infused with radiant light!

    With love and warmest hugs on this snowy night,
    TIrzah

    Reply
  7. Kumari Ellis

    i can only imagine what strength and presence it requires to walk this path….thank you deeply for sharing your journey. when i think of you Kabir i picture you singing the song to Hanuman you wrote, to Papaji in Luckow.. i wish you all the peace and serenity, strength and wisdom in the world for the upcoming weeks. with love Kumari

    Reply
  8. Peggy

    Dearest Jeremy, thank you for your update. You are traveling on a very rocky road and I wish for the best during your days. I think of you and Kristina whilst I’m in Mexico. Here there is so much art and folk art, everything made by people’s hands. So many totems of the Heart, and think so often of your amazing love between you and. Kristina. Oh, the love.
    Sending hugs and a bucket of love hearts

    Reply
  9. Uma Simon

    Dear Kabir: Much gratified to hear of your positive results. Many prayers for what you will yet undergo in your courageous struggle. I couldn’t help but think how much you are helping others in similar, even if not as complex, situations. You encourage me in my life. Thank you. Love Uma

    Reply
  10. peter sandison

    Dearest Jeremy,
    You were always such a great inspiration to me. You have taken that to new limits. Thank you so much for your amazing courage, your truth, your astounding generosity and walking your path with so much love and compassion and for sharing your stories.
    So much love to you,
    Peter

    Reply
  11. Bev

    Your blog is filled with much news! I’m happy for the positives: that Kristina is by your side, that you have the surgery behind you for now, and; several treatment options too. Yes, cross the bridges one at a time. Sending you love & warm healing Arizona sun! Thank you for your updates. Continuous prayers ….. xoxo

    Reply
  12. Pat Blair Pierce

    Thank you Jeremy for sharing your journey. My heart is with you in this path you are traveling.
    Pat Blair Pierce

    Reply
  13. Charley Cropley

    Hey Jeremy;
    The number and enormity of the decisions you face feels wearying to me. While you must think rationally in all these, reason is insufficient in most. The Great Mystery decides and lives Herself out in your body mind. I am happy to hear that your brain scans are clear. Yessss! Also of the fine pain doc you have found. What a blessing! And Kristina, how blessed you are with her.
    May you Heal. May you be free of suffering. May you live in Peace.

    Reply
  14. Diane Nunn

    CT Scans on Monday. OK, I’m right there with you. Sometimes I wonder how your Drs. and Nurses can even get to you through the mass of us who are always “surrounding” you.

    It is so good to have your report and so now I send continuing wishes for additional progress, packaged of course in Love.

    Diane

    Reply
  15. David Langer

    Dear Jeremy,
    I was directed to your blog by my dear friend and fellow Advaita embracer, Robert Wendorf in San Juan Capistrano, CA. He sent me your article on The Seven Levels of Healing, which was wonderful. I shared it with my oncologist, Timothy Lopez, here in Santa Fe, who was familiar with you and your work. You two may have met. Thank you for the extraordinary sharing of your process. You bring profound blessing to the rest of us and we feel connected in your suffering and healing. Resting In God’s hands and doing your part in the process with love and grace … nothing could be more powerful. Wishing you the best of outcomes on all fronts.
    Blessings,
    David

    Reply
  16. William

    Jeremy,

    Brother, thinking of you and sending love and support.

    I have been following your blogs and think of you often. Having read through your Journeys I am struck by the amount of strength and courage you have in navigating the vast and challenging hurdles you face. Knowing you and the man you are, I am continuously inspired and blessed to have you in my life. I know I am not alone in feeling this and putting it out there. I continue to pray for you to fully recover from this challenge you are on and remain beside you in support and love.
    I look forward to seeing you soon and hope that when you are feeling up to it we can come together. Cielo and I hold you and Kristina close to our hearts. We cherish the times we spend with you and the talks we have. Please let us know if there is anything we can do to help or support you.
    Looking forward, I am excited to support you in the forth and final meeting to heal your body. I know in some way the medicine is helping you along this journey. The difficulty and struggle that sometimes arises in those meetings can be challenging. I admire the willingness and courage you have had to see it through. It is representative of your character and strength. I deeply respect you and that part of you.

    In love and strength,
    William

    Reply
  17. Diana Tripp

    My best wishes and prayers remain with you through your continued journey. Through these most difficult times, you seem to remain steadfast and open, pursuing every option that is possible and probable. Your’e a courageous champion, Kabir and I hold you in the deepest regard.

    Love always,
    Diana

    Reply
  18. Becky Parrish

    Sending prayers from myself and my mother. I grew to love you Jeremy and Kristina while you were here in Asheville. I am praying that your journey will be filled with healing, love and all the support that you can imagine.
    Much Love,
    Shorty Parrish

    Reply
  19. Kashi

    Dear Kabir,
    Thank you for your updates. I’m happy to know there are positive results and look forward to hearing about more after your Pittsburg trip. Love to you and Kristina. You are in our daily ashram pujas and always in my heart.
    Love,
    Kashi

    Reply
  20. Jill

    I am sorry to have missed you & Kristina today. I can only imagine the challenge of all of these medical decisions & the endurance it must take to get through all of this. I wish you the best on your results and peace in finding the right decisions for you. Sending good energy your way…

    Reply
  21. Doug Parker

    Jeremy

    Friend, brother I stand in awe of you, your ability to see and share your heart and your process so deeply as well as the power of your physical endurance.

    With deep love and respect,
    Doug

    Reply
  22. Kathryn

    Fear Jeremy cannot use the internet much I am having eye issues but I continue to hold you with love in my heart and prayers many blessings Kathryn

    Reply
  23. Nicole

    Jeremy,
    AJ and I keep you in our thoughts and prayers always. The journey you are on in tremendous, and I really appreciate your courageousness and all of the effort this requires of you. It’s been really special for us to get to keep up with you via this blog, thank you even more for making time to update us through everything.
    love-love-love,
    Nicole (and AJ)

    I came across this Mary Oliver poem today, and wanted to share it with you:

    Mary Oliver
    The Journey

    One day you finally knew
    what you had to do, and began,
    though the voices around you
    kept shouting
    their bad advice–
    though the whole house
    began to tremble
    and you felt the old tug
    at your ankles.
    “Mend my life!”
    each voice cried.
    But you didn’t stop.
    You knew what you had to do,
    though the wind pried
    with its stiff fingers
    at the very foundations,
    though their melancholy
    was terrible.
    It was already late
    enough, and a wild night,
    and the road full of fallen
    branches and stones.
    But little by little,
    as you left their voices behind,
    the stars began to burn
    through the sheets of clouds,
    and there was a new voice
    which you slowly
    recognized as your own,
    that kept you company
    as you strode deeper and deeper
    into the world,
    determined to do
    the only thing you could do–
    determined to save
    the only life you could save.

    Reply
  24. Greg Plotnikoff

    Dear Jeremy–
    I treasure your expressions of gratitude in each update. Thank you for keeping us connected with you and your experience.

    And I treasure the incredibly beautiful expressions of love, care, hope found in each blessing sent to you in response.

    I wish I could be as articulate, Please know that there are many like me out there with daily prayers for your health, strength and comfort.

    With deep fondness and loving intent,
    Greg

    Reply

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