Jan 31, 2015: A Current Update

IMG_1496It’s been another very intense two weeks on the cancer journey.

I had followup MRI scans of the spine on Monday and Tuesday, Jan 26th and 27th, as planned.  The scan results are somewhat complex and hard to interpret — which can happen in oncology more frequently than one might expect.  On the positive side, most of the bone lesions are stable in size after the last two cycles of chemotherapy, and there are no new lesions noted. This was really encouraging.  On the other hand, several of the existing lesions increased in size, and, unfortunately, the scans showed signs of recurrence of the worrisome problem involving the T3 vertebral body lesion that I’ve been following and treating for many months.  It is now, once again, coming close to the spinal cord. This is scary and unsettling.

On Wednesday, Jan 28th, I reviewed the findings with my medical oncologist, Dr. John Fleagle.  Given the complex findings — and the types and extent of treatments I’ve already received almost non-stop over the past 16 months — he agreed that the next steps forward are not clear.  

Yesterday, Jan 29th — which was Kristina’s 35th birthday — we went to see a radiation oncologist in Denver whom I’ve seen before, Dr. Dennis Carter, to hear his thoughts and opinions about whether or not the T3 lesion needs to be radiated again, and if so, how urgently.  He acknowledged that treating it now could be helpful, but felt that I have some time to make a final decision.

On Monday, Feb 2nd, Kristina and I are flying to Pittsburgh, PA, for a consultation on Feb 3rd with Dr. Hussein Tawbi, a medical oncologist who is the director of the sarcoma program at the University of Pittsburgh Hillman Cancer Center.  He is also the principal investigator of a number of clinical trials that could potentially be meaningful options for me at this critical juncture.  Hopefully, he will have other helpful insights and recommendations about how to proceed in this situation.  I am eager to see how that visit goes, and what he recommends.  We’ll be flying back home to Colorado on the evening of Feb 3rd.

In the midst of all this, I have unfortunately also been experiencing continued toxicity from the last cycle of Doxil (#4), that I received on Jan 8th.  For some reason, this cycle really wore me out.  I’ve been exhausted, and have had generalized stomach aches, nausea, and very low appetite.  Usually by this time after a cycle of chemotherapy, I have recovered and am feeling generally well.  But not this time.  It has been very discouraging.

If all this weren’t enough, in these last number of weeks I’ve also continued to struggle with recurrent symptoms of difficulty swallowing solid food.  This is caused by the rare achalasia syndrome that I was diagnosed with in 2011, at the time I was also diagnosed with sarcoma, and which I have mentioned briefly in previous blog posts.  Over the past three years, I’ve been treated four different times with endoscopic procedure that includes dilating the lower esophageal sphincter with a balloon, and injecting botox into the sphincter muscle to allow it to open more easily.  Initially, the treatment worked very well. But a year ago the symptoms recurred, and then again they recurred this past fall.

Last week, I saw a gastroenterologist at the University of Denver, who specializes in a relatively new endoscopic surgical procedure, called the “POEM” procedure (which stands for “peroral endoscopic myotomy”).  The procedure has a high chance of relieving the symptoms, but there are risks and potential complications associated with it as well.  It requires anesthesia, at least day in the hospital, and a recovery period of a week to ten days.  He has recommended that I go through with the procedure, and I am strongly considering it.

So, that is a brief overview of the current landscape. It is an understatement to say that our plates have been very, very full.  As always, Kristina and I are doing our best to sort through all these issues and challenges as thoughtfully and carefully as we can.  For now, more chemo or further interventions of any kind are on hold — at least until we return from Pittsburgh. I feel that my body and soul need a period of rest, and some time to recover and heal. Kristina and I continue to move through all of this one day at a time, with as much surrender, wisdom, focused action and intention — and as much heart — as possible.

I will keep you posted as things continue to unfold.

Meanwhile, I want to thank you as always for your love, prayers, and good wishes.  They continue to move and inspire me, and are a great source of comfort and encouragement. As always, I would so much like to be able to respond and be in touch directly with each of you, but with so many things swirling around right now, both inside and out, it is just not possible.  I hope you understand.

With love and appreciation …

26 thoughts on “Jan 31, 2015: A Current Update

  1. Diana Tripp

    You continue to have one challenge after another – and I can only offer compassion and empathy for the stress you continue to go up against. You statement “Kristina and I continue to move through all of this one day at a time, with as much surrender, wisdom, focused action and intention — and as much heart — as possible.” is moving. You continue to meet this challenging journey with love, with hope, with the most positive thinking you could have. It’s deeply touching.

    I wish I could do more, for either you Kabir – or for Kristina. All I can do is offer you my love, my support and to send you healing energy. I am here; just know that.

    I pray the new considerations you’re weighing will bring promise and healing. You are in my heart.

    Love,
    Diana

    Reply
  2. kashi frank

    Dear Kabir, Thank you for your update — it all sounds very difficult and time-consuming. Your courage is inspiring! I’m grateful to know you are being well cared for, both by your colleagues and Kristina. You are fortunate in so many ways (as you seem to know). We continue to keep you in our Ashram pujas and prayers. You are, and always have been, in my heart. Much love, Kashi

    Reply
  3. Jill

    Jeremy and Kristina — Thank you for sharing this update, and keeping us informed. I only wish you could catch a break with this! I do hope that your consultations will offer you some resolution or some more appealing or more promising options. I wish smooth travels for you, rest, peace, and many little vacations from the symptoms, treatments, and medical appointments. Keeping you my in thoughts . . .

    Reply
  4. Sandy Sela-Smith

    My thoughts and prayers are with you and Kristina as you prepare for you trip to Pittsburgh. And, as always I hold the image of healing as you continue your investigations into healing. Have a safe and fruitful trip. You are not alone.

    Love, Sandy

    Reply
  5. Chris

    Dearest Jeremy – you have done so much for returning your body, mind and Spirit to great health. Rest in-between is good. As always, sending you prayers daily and all the way to Pittsburgh and back again.
    Love, Chris and David

    Reply
  6. Parvati

    Your stamina and courage and seemingly clear-headed thinking thru out this complex and debilitating journey are inspiring. May the gods rain down flowers!

    Reply
  7. Omkar Naga Jaja

    Namaste Kabir,

    My thoughts are with you and Kristina and prayers are sent every day for your healing and well-being.

    I appreciate your blog so much. Thank you for sharing your journey. May the best path become clear and the journey easier.

    With love,
    Omkar Naga Jaya

    Reply
  8. Diane Abbey Nunn

    Dearest Rame — Your plate is more than full with huge decisions, reactions, healings, concerns, and I hope and believe, a large portion is the love you and Kristina are sharing. How wonderful you are together!
    Meanwhile, the rest of us will take the responsibility for letting you know you are in our hearts always, that we send strength, love, shares of determination when you may feel yours is waning.

    My heavens, you have accomplished so much with the decisions you have made, your patience with needed healing time and with keeping your mind open to new possibilities. You are phenomenal and I knew that all those years ago.

    Good luck with the trip and I send hugs for you and Kristina as you approach this new direction.

    Diane

    Reply
  9. Steve

    Kudos to both of you! This is an incredibly hard time I’m sure. I think of you both often and send my positive thoughts.

    Reply
  10. TaraNaga

    Jeremy dear I continue to think of you and hold you prayerfully in my intentions to see you well and recovered from this ordeal. I am amazed at your resilience despite every difficulty you continue with vigor. I send MORE OPTIMISM, MORE positive thoughts and white light to your waking and sleeping and LOTS OF LOVE!!!

    Reply
  11. Tirzah Firestone

    Jeremy this sounds incredibly complex, dense, and hard to navigate.
    I still have the overarching feeling that you are being taught first hand (first body) the intricacies
    of this disease & healing journey so you are equipped to help others in a new way on the OTHER SIDE of this disease process.
    Happy birthday to dear Kristina….
    I know you may be exhausted but you are both totally radiant!
    Love
    Tirzah

    Reply
  12. MaryAnn+Warren

    Dearest Kabir + Kristina,
    All love, support and healing energy continues to flow from our hearts to yours. Happy 35th Birthday, Kristina ~ and Thank You for taking such good care of our Dear + Beloved Jeremy!

    Reply
  13. Paul Bass

    You guys continue to be in my thoughts and prayers EVERY DAY. I’d love to speak with you when you feel up to it. Paul

    Reply
  14. Jack VanDervort

    Jeremy, Like the good doctor you are, in times of difficulty, you have gathered the best physicians around you and the synergy of Loving friends. The great physician within you bears witness to the true path of healing & enlightenment, even through times of trouble. Your witness will help to heal others beyond your time and physical reach.
    We Love you because you Love the things we Love.
    Jack V.

    Reply
  15. Pat Blair Pierce

    Dear Jeremy & Kristina-
    My love & prayers of support are with you. May you both find peace & healing in the coming days.

    Reply
  16. Varanasi

    Namaste

    …..and many happy returns of the day…on the birthday of your beloved Kristina

    HAPPY HAPPY HAPPY BIRTHDAY TO YOU Kristina
    you are a warrior of the heart

    Varanasi Love

    Reply
  17. Peggy Wrenn

    I hold Jeremy and Kristina’s hearts, as they are flying to Pittsburgh to see about options. I can see them in my mind’s eye; their hearts are gold. Rivers of love to Jeremy & beloved Kristina… fly home safely

    Reply
  18. Richard Sann

    Dearest Jeremy and Kristina,
    You are constantly in my prayers, spoken and inner. I bow constantly to the commitment
    to healing that you both display. Sending love, peace, and constant healing blessings your way.
    Richard

    Reply

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