Mar 8, 2015: Difficult Choices

This is a difficult blog post to write and share.

On February 23rd, I underwent CT scans of my chest, abdomen, and pelvis, as scheduled.  Compared with my previous scans in late January 2015, the new scans showed mild further progression of the many bone lesions I have been dealing with now for nearly two years.  The chest CT scan also showed a small (0.5 cm) lesion in the right lower lobe that is worrisome for a possible lung metastasis.  This was obviously disappointing to see.

On March 3rd, I returned to the University of Pittsburgh Hillman Cancer Center for a follow-up consultation with Dr. Tawbi, the wonderful oncologist who I originally met on February 3rd.  We reviewed everything in great detail.   There are three basic treatment paths I could pursue at this point.

The first path would involve treatment with one of the emerging immune-based therapies that have received so much promising attention in the oncology world over the past couple of years.  These drugs are not FDA-approved for treatment of sarcoma.  There is one trial that would be very relevant for me.  Unfortunately, however, as it turns out I am not eligible to participate because I do not meet the trial eligibility requirements.

The second option would involve trying one of two “targeted” drugs that have shown activity against cancers that have a gene-mutation that was discovered in the genome sequencing assay performed on my tumor about a year ago.  One of the drugs is available only in a Phase 1 clinical trial — which I am eligible for, but do not feel I can participate in because the logistics involved are overwhelming (for example, I would have to either move to Pittsburgh for two-three months, or travel there weekly for the first nine weeks — which I am just not strong enough to take on.)  The second drug is available off-trial, and has shown promise for patients with the gene mutation I have.

The third approach would be to pursue more conventional chemotherapy treatments, of which I have already received 11 cycles of two different chemo regimens (after three months of a different targeted drug, in the spring of last year). The chemo drugs did show evidence of improvement … but were accompanied by very difficult side effects.

Dr. Tawbi, and several other specialists I have consulted, have encouraged me to go ahead try the targeted therapy that is available to me right now.  Of course — as with any anti-cancer medication — there are very likely going to be more toxicities and side-effects.  This is no small matter, because I continue to struggle mightily every day with severe bone pain, requiring very high doses of pain (and other) medications, and fatigue.  I am also still healing from the achalasia surgery I underwent last month.  In addition, even though this drug is targeted against my particular gene mutation, it is unclear how well it will work.  Furthermore, taking this drug now (or any other anti-cancer drug, for that matter) will likely make me ineligible for a variety of potential clinical trials in the future, because it will be my fourth line of systemic treatment.  Most clinical trials require that patients have only received three prior lines of systemic treatment.

I acknowledge that the past number of weeks have been qualitatively more difficult than perhaps at any other time in my journey so far. The pain and fatigue that I have been experiencing have reached a new level.  The clinical data for any of the drugs available to me is also limited and uncertain.  Enduring this level of pain while also trying to make a decision between several less than optimal treatment choices has been extremely hard.  At times, I have questioned whether I even want to continue with treatment at all.

Nonetheless, after agonizing over these very difficult choices, I am inclined to go ahead and give this new targeted drug a chance.  Despite the challenges, I feel compelled to continue to try to find a way — at the very least — to stop the progression of my cancer.  This drug (that targets the genetic mutation I have) offers that chance, and even the possibility of a very meaningful response.  But it is unlikely to be an easy path.

I will be meeting again with my local oncologist early next week, and expect to start the new treatment soon thereafter.

Meanwhile, I want to say “Thank You” again for your continued love, prayers, and good wishes.  There is so much that Kristina and I have had to deal with in all of this.  Walking the cancer journey consumes so much time and energy, and has been exhausting.  This continues to make it extremely hard to stay in touch with family, friends, and colleagues more directly, which is very painful for me.  It is a great blessing to be in touch through this blog, and to receive your expressions of love, encouragement, and support.  Thank you again for reaching out, as you are able.  It means a great deal to me.

46 thoughts on “Mar 8, 2015: Difficult Choices

  1. Dale Figtree

    Hi Kabir, you are in my prayers daily. I would like to send you a cassette (yes, not a CD!) that might be of value to you. Please send me your mailing address to my email address if you are interested.
    Dafigtree@aol.com
    With love and blessings,
    Jyoti

    Reply
    1. Jennifer Lentz

      Dearest Jeremy;
      A friend told me about your blog and I am happy to catch up with you though saddened to learn of the painful turns in your journey. I did call you several times but did not hear back so figured you were happily settled in your new work with Kristina. (By the way I remember well your comments about her in a conversation we had about Vanderbilt the afternoon after your first meeting with her…glad it worked out the way you hoped! Clearly it was spiritually directed.)
      Please know my heart holds much love and deep wishes for your best in all things. Be well my friend!

      Reply
  2. Judith Ansara

    Jeremy -I continue to send my love and prayers and my continued gratitude for you and for your courage and transparency. So many of us are with you– there are many candles lit in my hearts.

    For whatever reason – this poem I wrote recently is asking to be shared.

    Calligraphy

    “How do you know when the painting is done?” he asks

    In her hand –brush still full
    black ink, rice paper
    jumbled with the missed ending

    We can all see it

    We cluster around her
    hoping with a single fluid stroke
    the Master will dispel confusion

    Hoping we each can recognize
    the one true thing

    Judith Ansara
    12-2014

    Reply
  3. Jack VanDervort

    Jeremy-wise and gentle brother,
    We smother you with kisses from afar. We know that Love is the ultimate medicine and you have already chosen wisely by initiating this blog of beautiful camaraderie and communion with you. We all dream this life together and your continued witness through this trial of tears inspires us to Love even harder.. We are all stronger because of the Love and concern you share with all of us. Our prayer today is that in Love you will find some ease in your dis-ease. Thank you for your presence in our lives. The world is a much better place because you are in it. Go forth in strength brother- you have a mighty force within you.
    With Love and gratitude. Jack V.

    Reply
  4. Omkar Naga Jaja

    Namaste Kabir,

    You have such strength and courage.

    My thoughts and prayers are with you and Kristina.

    Love,
    Omkar Naga Jaya

    Reply
  5. Alejandro

    Dear Jeremy,
    as i continue to read your comments of your journey living with cancer, i admire your integrity and inner strength. I keep you in prayers for recovery and better QOL.
    If there is anything i can help you with, through meditation, etc. please do not hesitate to ask
    with big, warm hug
    ale

    Reply
  6. Robin Temple

    Dearest Jeremy,
    I enfold you and Kristina in my love during these difficult days. I so wish I could do something to relieve your pain and suffering. I know that the Wisdom within you is and will continue to guide your course. May the love that surrounds your bring you moments of peace and ease in the midst of the anguish.
    Love Love Love

    Reply
  7. Amara Geffen

    My dearest brother and sister Kristina,

    My heart is with you both. I know it has been a difficult decision, one that I encourage you to trust and not second guess. You know your limits better than anyone, and being at home and with friends nearby is vitally important too. I only wish I were closer geographically so I could be more of a help to you both.

    Remember I am here and the three of us will all keep you in our hearts and prayers.

    If you need me, or if either of you want me to come to help, please just say the word and we shall work it out pronto!

    All my love,

    Amara

    Reply
  8. Susanne Malles

    Just recently discovered you had a blog. I always hesitated to stay in touch before since I figured you had more than enough on your plate. You obviously still do but I wanted to let you know you are in my thoughts and prayers.
    Hugs, Serenity,
    Surya Ma, Susanne

    Reply
  9. TaraNaga/Rita

    You are courageous in your assessment of all your options!
    I feel assured that the decisions are the best that can made.
    You and Kristina are well along the path to a deeply spiritual love that all beings seek.
    Let that deep love nourish this time and know that it is multiplied by all the rest of us who hold you dear!
    Be well darling Kabir!

    Reply
  10. Uma Simon

    Dear Kabir,
    Thank you for keeping us informed of your progress. We continue to pray for you and extend good wishes and thanks to Kristina for her loving care of you.
    Love,
    Uma

    Reply
  11. Chris

    Oh Jeremy–you have endured so much with so much courage. This is bound to turn out well for you. Sending all prayers and love.
    Chris

    Reply
  12. Kevin Mulshine

    Jeremy
    Your choice gives me hope that you may one day soon feel “healthy”. One day without pain or fatigue. Then two. You never stop giving to those in the fight. As a doctor. As a writer. Now as a patient with new treatments. You are such an amazing inspiration.

    Livestrong
    Kevin

    Reply
  13. Jill Winter

    Dear Jeremy,
    I have just read your latest post. What an unbelievably challenging journey. You are such a special person and I am so grateful to have been a part of your wonderful Seven Levels of Healing program which benefited so many people affected by cancer.
    You will always be in my thoughts and prayers.
    Many blessings,
    Jill Winter

    Reply
  14. Pat Blair Pierce

    Dear Jeremy,
    MY prayers & support continue to go out to you. Thank you so much for sharing your journey.
    Love & hope fly to you.
    Pat

    Reply
  15. Vivian

    Jeremy, I woke up thinking of you today and praying that your journey has been an easy one. I am filled with a kind of suspended wonder that you are going through all of this. My dear friend, Teresa, whom you helped so much is doing great and continues to claim you as her lifesaver in her battle. My own husband, Mike, is doing great and loving life again. I hold the same vision for you of course and we are sending lots of love and good will. Chris and Pam included. Thank you for continuing to fight and for documenting your journey. Love you lots, Vivian

    Reply
  16. Emma

    Dearest Jeremy, I feel sad and heartbroken about all of the pain and difficulty you are facing. Your courage and perseverance are remarkable and Keith and I are sending a steady stream of love and support your way during this weeks and months. We love you and please let us know if there is anything large or small that we can do to support you and Kristina. All our love, Emma and Keith

    Reply
  17. Marc Edwards

    It is the case that following your life and your blog, Jeremy, invokes many responses in me, of which pain is towards the front. I believe it takes great courage on your part to share the information on the progress of your medical condition, and its impact on your greater self. What is evident is the profound love of life that is conveyed to me by your dedication to sharing your experience, such as it is, to your community.
    To recognize and celebrate what we have, despite our longing to imagine it could be different, or better…
    My love,
    Marc

    Reply
  18. Diana Tripp

    Dearest Kabir. You and Kristina have my full heart. It does break my heart that you have to endure such extreme pain, exhaustion and overall trauma. I bow to your courage and your conviction. I surely wish there were something i could do to ease this journey for you – but all I can do is send you my love and support. I do pray that your will find comfort and some healing in this venture you now choose to undergo. You have the support of all of us, I know.
    Diana

    Reply
  19. Michael Vladeck

    Thanks for sharing all of this, dear brother. I appreciate your deep commitment to do the best thing for yourself – and all the love it takes to go that deep. We are truly sending you love and holding beautiful visions of your healing.
    On another note (just Michael here), often when I sit in practice, I think of you. More specifically I think of something you shared years ago when you talked of living in NY, mediating in some small space (a converted closet?). You said, “I would see how still I could get” – or something close to that. And that has served me for years, but it always slips my mind to share that back. Good one!
    Tremendous Love,
    Michael and Christine

    Reply
  20. Lina

    Dearest Kabir,
    Your heart-cracking willingness to share the excruciating depths of your journey right now touch every one of us so deeply. We keep you and Kristina tightly in our prayers.
    With all our love from Lina, Arjuna, and Jay Jay

    Reply
  21. Redwing

    Hi Jeremy
    Your process is so interesting to be part of from a distance. Thank you so much for sharing it.
    As a Palliative Care nurse and also as a “person with a history of cancer, my question to you is: What makes life worth living at this time? What does “quality of life” mean for you as you “struggle daily?” I am so curious about what it is that makes us continue on this intensely challenging path, and what holds us to this Earth plane. Perhaps sometime if you have energy, you would write about that?

    Sending healing your way,
    Redwing

    Reply
  22. Tirzah Firestone

    Jeremy and Kristina
    This is hard news. And I feel for you so deeply…It must take enormous energy to
    keep undergoing treatments that make you feel lousy and are not sure-fire.
    Please let me know if I can drop off a soup or a meal…dont know where to find you.
    With love
    Tirzah

    Reply
  23. Charley Cropley

    Jeremy and Kristina,
    I feel pretty sad reading of your pain, fatigue and the less than optimistic choices available to you.
    I love you both. If I am able to help you in any way, please do let me know.

    Reply
  24. Bev Paul

    Dearest Jeremy,
    Surrounding you with all the love I know how to send. May you be able to find brief respites of inner peace somewhere in the midst of all the turmoil. I want to be sure you know how much your work contributed to my healing & life today. Thank you so much, Jeremy, for the beautiful person you are. You & Kristina will continue to be in my thoughts & prayers daily.
    Love & blessings from Tucson,
    Bev

    Reply
  25. Jan Adrian

    Thank you for sharing your journey so honestly with us. You have shown such courage and wisdom. Blessings to you and Kristina as you find whatever treasures are in this experience for you.

    Reply
  26. Carole Abrahams

    Dearest Kabir,
    I have a photo of your handsome , smiling self in my puja room and you are in my daily prayers.
    You are in my thoughts every day as I journey with those all around me who are going through their own experiences with a variety of cancers and sarcomas.
    You told me many years ago that cancer would increase exponentially….and sadly you are right.
    I have carried you in m heart since the day we met… and so it will always be.
    Al my love forever.
    Ganapati Ma

    Reply
  27. Mirabai

    Sweet brother, I am reeling from this unfolding challenge. My heart enfolds yours as you climb this mountain. Ganga Das joins me in sending waves of healing love.

    Reply
  28. Jeanne Holmes-Buttner

    Jeremy and Kristina –

    Jeremy, in my mind I see you sitting at your desk as you write the words I have just read. I can also see Kristina standing beside you, her hand on your shoulder, as she reads what you have written. What I see in my mind’s eye is a memory that I brought back from Boulder with me, because it signifies the closeness of the two of you – not just in space and time, but most especially in love. Jeremy and Kristina, though this experience is intensely difficult for each of you, in the midst of it you have been given the miraculous gift of deep and abiding love and grace. You know, I left a part of my heart with you, but I took something even greater away with me: a memory of the beauty of your love for each other. I thank you for giving me that memory.

    Love you both.

    Jeanne

    Reply
  29. David Langer

    Jeremy– You don’t know me personally,but I am so grateful for your sharing and courage. I’m working with Tim Lopez here in Santa Fe and Ruben Mesa at Mayo (Scottsdale) on Myelofibfrosis…also COPD (on our way to the National Jewish Hospital in Denver this Thursday. You are a great inspiration,Jeremy. I feel your pain and struggle beneath the clear, warm communications. I can only praise you to the heavens for the grace you continue to exhibit under this kind of fire. God be with you. All existence is miraculous. Reality is the very definition of plasticity. You are extraordinary. Blessings, David Langer

    Reply
  30. Jane Bialosky

    Dear Jeremy,
    Your courage gives us courage in whatever we are doing. You are a pioneer and through you, discoveries will come and progress will be made. There is so much that still needs to be known. No one should have to endure the pain you and others endure with cancer and cancer treatments. We need prevention, cure, and eradication of the pain. You are remarkable in your “well being” and balance even in the thrall of the disease. When I read about your ordeal, I want to fight this mighty foe, but I am also overwhelmed by the depth of your peace and witnessing value–the testament to your dedication to spiritual growth.
    Thank you.
    Jane Bialosky

    Reply
  31. Laxsmi

    Love is all there is.
    You embody so much for so many.
    Thank you.
    And Kristina.
    You are both in my heart.
    always,
    Laxsmi

    Reply
  32. Amy Collins

    Dearest Jeremy,
    It breaks my heart that you are faced with these difficult decisions, but I have no doubt that with your wisdom, medical knowledge and insight you will choose the path that is best for you at this time. I continue to think of you often and keep you in my prayers.
    All my love,
    Amy-la

    Reply
  33. Kathryn

    Dear Jeremy I am so sorry that you are in this terrible struggle and in such pain. I continue to hold in my daily prayers and thoughts I dearly love you my friend andask the Spirit of God to be with you and to help you to discern how to continue in your treatment. I pray that you have peace strength and courage for your journey. Love to Kristina. Blessings Kathryn

    Reply
  34. Jill

    Dear Jeremy & Kristina — I am awed by your fortitude, authenticity, and courage with all that you have suffered and endured in the past few years. I so dearly hope that this next treatment will offer you respite and health. Please know that you are in my thoughts — wishing good energy your way.

    Reply
  35. Brad

    Dear Jeremy,

    I am sorry to hear that recent weeks have been so difficult. I pray for strength for you during your next round of treatment and that this treatment will bring the meaningful response that you and many others hope for. Blessings to you, Jeremy. You will be in my thoughts and prayers.

    Love,
    Brad

    Reply
  36. Barbara King

    Jeremy, I’m not sure that you received my other messages. I’m still so new to social media. My prayer you is that you receive all the healings that were released through you to so many of us. As we pray for your healing we also realize that in your challenge you are blessing so many with the processes you are going through. We bless Kristen for the love you share. I will send you a CD of my praying for you. Address please. Peace, Love and Butterflies.
    Your friend always.
    Barb in Atlanta, Georgia and the entire Hillside family.
    Dr. Barbara King.

    Reply
  37. Peggy Wrenn

    I and many people are blessing this new medicine, directed at Jeremy’s genetic profile. May this medicine bring wellness and relief from such pain.

    Jeremy, I see how painful this for Jeremy’s body, on a scale 1-10, sometimes at 10+.!! very painful in your bones, I am holding your amazing fortitude, determination and also your surrender… Like you wrote, “focused action in arms of surrender,” May you recieve relief from pain, at all levels – Sobeit!

    Our arms hugs and hold you in our virtual arms. Love, love, love

    Peggy

    Reply
  38. Susan Schmidt

    Hello Dr. Geffen,
    I have spent the past 3 hours reading everything in your blog. I marvel that, as always, even through your own cancer struggle, you write with a healing voice, a profound calm, and an intentional purpose….when I think of you saving me from cancer so many years ago and offering my father such support during his cancer journey, I realize that this is your trademark. Your spirituality, your love, and your tangible life force. I love you Doc, as does my whole family, and we will be ALL be sending you healing thoughts, positive vibes, and lots and lots of prayers.
    Susan

    Reply
  39. Kashi

    Kabir, You are always in my heart and prayers — You are in our daily prayers at Kashi Ashram as well — waiting to hear good news about the new treatment. Love and kisses, Kashi

    Reply
  40. Nancy Rumbel

    Dear Jeremy,

    What a challenge you continue to face on this path. I hope that you are able to rest and not be in pain. I hope that you are finding things that continue to bring you joy including the wonderful inspiration, joy and friendship that you give to so many!!! Living each moment as best we can! You are a pioneer for science and I pray that this treatment will work! We’ve all seen or heard about miracles. I LOVE them :) LOVE you TOO:)
    Nancy

    Reply
  41. Sandy Sela-Smith

    Jeremy,
    I have read all the messages from so many people. Some names I recognize and others I do not, but it is so clear that every one holds you in love and sends you the light of love, the very best medicine in the Universe. I join them in being with you in love and light as you meet the challenge each day carries…one-day-at-a-time. You are not alone, that would be impossible even in the moments it might feel as if you are alone. Every one of us (the 157 loving souls who are registered on this blog, all of those who have ever known you and love you for who you are in your soul and spirit, all those known and unknown who are connected to the magnificent web of love, and all the guides and love-filled spirits of the universe from all time and timelessness and all places) support you with our hearts-minds-and spirits. I wish you peace, even in the struggle.
    Love,
    Sandy

    Reply
  42. Marc Edwards

    Jeremy,
    Just these few words to say that you are in my heart strongly at this time.
    With love,
    Marc

    Reply
  43. Barbara King

    I love you. May God keep you in his arms and fill you with light and love.
    Thank you Kristina for your love of Jeremy.
    He is not alone.

    Reply

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