Mar 27, 2015: Hospitalized

I am writing with another update; this time, from the University of Colorado Hospital, in Denver, where I was admitted on March 18th.

It is very strange to be writing from a chair next to my hospital bed, but it somehow feels important and helpful for me to share a bit of what has been going on.

These have been very difficult and critical days.

On Sunday morning, March 15th — after struggling for a number of days with worsening bone pain that had become increasingly impossible to control, along with increasing generalized weakness, a feeling of shortness of breath when lying down, and episodes of severe nausea and vomiting — I went to the ER at Boulder Community Hospital, in Boulder, CO.  Low and behold, I was found to be quite sick with pneumonia, dehydration, and anemia. I had also, quite clearly, become intolerant to the increasingly large doses of narcotic medications I had been taking for so long to manage the bone pain I’ve been struggling with for so many months.  The pain was now very severe.  After being admitted to the hospital, it was a huge relief to finally be able to collapse into the care offered by the doctors and nurses who were caring for me.

It soon became evident, however, that I was going to need even more expert and intensive treatment for the bone pain.  So — to my great fortune — on Wednesday, March 18th, I was transferred to the Acute Pain Management Service at the University of Colorado Hospital, in Denver.  This group is one of the few in the region that offers a fairly new and radical approach to treating intractable pain and opiate intolerance with a three- to five-day infusion of IV ketamine.  Ketamine is a powerful anesthetic and pain medication that can reset one’s opiate receptors when used in this way, and — for many patients — allow re-introduction of a simpler and more effective pain management regimen.  The technique is fairly new, and somewhat controversial.  It requires constant, careful monitoring of the patients’ cardiac and respiration functions.  But it is slowly gaining acceptance throughout the country as more and more studies show its potential and effectiveness.

The infusion started late in the evening of my my arrival on March 18th, and in my case, it ended up being a five-day infusion.  One of the hallmark features of ketamine can be a dissociative experience of feeling separated in some way from the extreme, painful drama going on in the body, and being able to observe one’s pain from a more objective perspective.  At the same time, it can deeply soften the normal psychological boundaries and defense mechanisms that arise in many situations in life, but especially in a serious, or life-threatening, circumstance.  In this context, the medication can promote a powerful relaxation of those ego boundaries and defense mechanisms.  Deep emotional lability and intense feelings of loss of control can surface.  Buried memories, visions, emotions, and insights can come flooding out.  And the process continues 24/7 … for five days.

This is certainly what happened to me.  The five-day infusion was as emotionally cathartic as it was helpful from a pain management perspective.  But is was not an easy journey to take.

After the ketamine infusion was completed on Monday, March 23rd, I was transferred to the oncology floor, where I am still residing.  We are now in the post-ketamine phase of the treatment. I’ve been started on methadone and IV dilaudid for breakthrough pain. It seems to be working, as the bone pain is under much better — but still not complete — control.  I am hoping that things will continue to improve and I will be able to go home sometime next week.

Meanwhile, in the midst of all this, I had a number of other serious medical issues that required attention.  I’ve been receiving IV antibiotics and supplemental oxygen for the pneumonia, which is also slowly resolving.  I’ve needed numerous IV sticks for continuous IV access and, after multiple painful attempts to start IV’s in my arms, I finally had a PICC line placed on March 24th for reliable IV access — another invasive procedure which I had hoped to avoid.  I was also suffering from increased pain with swallowing related to my underlying achalasia and the recent (February 9th) lower esophageal surgery I underwent. This pain was now exacerbated by the recent episodes of nausea and vomiting I’d had, caused by narcotic overload.

Very significantly, on March 11th — just a few days before coming into the hospital — I also began taking the daily oral targeted therapy vismodegib, which was recommended by multiple physicians to try and gain control of the cancer.  So far, I seem to be tolerating it fairly well, which is a huge blessing and relief.  We shall see in time if the drug is effective, or not.  But at least for now, it doesn’t seem to be hurting me.

The ordeal of these hospitalizations, and the intensity of the issues I’ve been dealing with, have been profoundly exhausting, painful, and scary.  They have brought the reality of my mortality, deep vulnerability, and lack of control — and the very real possibility of death from this cancer — more fully into my conscious awareness than ever before, by far.  All I can do is continue to walk the path each day, as best as I can, and see where it leads, trusting that I am somehow, and unmistakably, being guided in every step.   I know this is the deepest truth, even when I feel my heart breaking from the ordeal I have obviously, somehow, been destined to undergo at this time in my life.  I have been pushed to my limits, and beyond, over and over again — especially in this most recent process of dealing with these multiple problems, in the setting of such abundantly clear uncertainty and the unknown.

Kristina has been with me — as usual — every step the way.  She has been spending much of every day with me in the hospital, and staying at a nearby hotel in the evenings so she can get some rest.  We have both been exhausted by this process, and look forward so much to the possibility that things will, indeed, become stable enough so I will be able to safely, and confidently, return home sometime next week.  I am so blessed by her love and presence in my life.

I also want to acknowledge and honor the remarkably kind, caring, expert care and attention I have received from so many doctors and nurses at Boulder Community Hospital and the University of Colorado Hospital over the past two weeks.

If some of you have felt how even more out of touch I’ve been during this time in particular, I hope this blog post helps explain how utterly impossible it has been for me to stay in touch.  As always, this is doubly painful to me, because I treasure our contact so much.   It helps me to heal — especially when the night is darkest, as it has been recently.

So, until we can be in direct contact again, I send my love and gratitude for your continued love, prayers, caring, and good wishes.

 

 

54 thoughts on “Mar 27, 2015: Hospitalized

  1. Richard Sann

    Dear Jeremy,
    I don’t know what to say, other than send love and prayers your way. I follow your postings, and you are always in my heart and prayers.
    Thank you for keeping us apprised of what’s happening. When you are open to visitors, at any time, I am there. Love also to your angel Kristina.
    Richard

    Reply
  2. Elizabeth Powers

    Dearest Jeremy,

    What a journey. I am so grateful for the update. I was at John of God’s recently and prayed a lot for you. Do know we all love you and appreciate that you need your energy to just to cope with the situation. I am so happy that Kristina, the angel, is with you. So grateful to hear from you.

    Much Love,
    Elizabeth

    Reply
  3. Mary Lee

    Dearest Ramy & Kristina,

    I am sending all my love, prayers and admiration for all you are facing and enduring together. I find your ability to articulate every step of your battle so incredible. You have always had a generous heart when it has come to others battling cancer and that generosity has helped so many, including my mother. Now your own experience, documented so well via your blog, I know will also help others.

    I really want you to know what a wonderful healer you are and I can only pray that this battle will be over soon and you will be back stronger than ever. Life is such a mystery. I never understand why bad things happen to such GOOD people. You Ramy are THE BEST of those GOOD people. I am so happy you have found Kristina. Thank you for all you are doing to fight for your life. You have so much more to give. It is not fair that you should suffer another day. Please feel all my love always!

    Mary

    Reply
  4. Jennifer Lentz

    Dearest Jeremy:

    What challenging days for you and Kristina and yet you write with such beauty and clarity. I am reminded after your recent post of something you said to me once: “We have only our best to give. And when we have given that, we can rest .”
    Rest and know you always give your best, my dear friend.

    Reply
  5. Nancy Rumbel

    You are a brave determined person!! Your spirit is amazing. I am keeping you in my thoughts, heart and prayers. May your body and mind find relief, healing and peace. Your are surrounded by love and friends both near and far. Blessings, blessings, blessings!
    Gentle hugs,
    Nancy

    Reply
  6. Sandy Sela-Smith

    There is no question that you remain in the hearts and prayers of so many, Jeremy. Very few of us can say we understand what you are experiencing, including me, because we have not experienced the challenges you have been facing, but there is one thing I do know, and that is that I love you. Another thing I do know is that when any of us faces unfathomable challenges, it can be difficult to fully take in the love that is flowing in our direction…I know that because I have been there and have experienced that difficulty. I continue to send love, knowing that when you can, you will feel the fullness of it in your heart and feel the resonance of the truth of that love in every cell of your body. We join you in seeing you back home next week with the complications eased and healing moving forward.
    Love,
    Sandy

    Reply
  7. Rafia

    I’m holding you in warm, soft thoughts and the gentle prayers of my heart, Jeremy. This has been an unimaginable experience and I’m so sorry to hear how much ongoing pain and uncertainty there’s been.

    All love . . .
    Rafia

    Reply
  8. Bev Paul

    Hi Jeremy,

    Thank you for the update so we can all support you in our own ways. May your wish of going home soon come true exactly as you imagine. BIG hugs & so much love coming from Tucson for BOTH of you. I’m just so very sorry you have to endure this ordeal. You’re such a kind, loving, helpful, caring man… It’s good to hear you are at the right place with the right staff. Of COURSE it would be that way. May God continue to fortify you & provide all you need exactly as you need it. Kindest thoughts & prayers constantly surrounding you, Jeremy. You are very loved.

    Bev

    Reply
  9. Jane Bialosky

    Dear Jeremy,
    We feel love and gratitude for your generosity in sharing exactly what is happening. It is, in a way, an out of body experience for us and at the same time intensely real. You are helping us to know what we cannot know, effacing the boundaries between us. Even now, with all you are going through, you are giving, serving, caring, appreciating, teaching. We can only be in awe.
    Our prayer is that you will be victorious over pain and you will be with us for decades to come.
    Love,
    Jane Bialosky

    Reply
  10. Pat Blair Pierce

    Dear Jeremey & Kristina-
    Thank you for sharing the latest steps of your journey. Please, never apologize for lack of communication when you are unable. We all hold you in our hearts & send prayers whether we hear from you or not. We know the universe is in charge & life unfolds as it will.
    Much love, support & prayers to you both.
    Pat

    Reply
  11. Peggy Wrenn

    Beloved Jeremy and Kristina, you have been in this crucible of agony and uncertainty. And Kristina by your side, all day, staying so alert to what is going on, holding your hand, holding your tender heart. An amazing love, really unconditional love. The real deal. I pray for your welcome home, being back with Max, the imitable cat who loves Jeremy and Kristina so much. Your blog is missive of love to us… thank you for keeping us in your journey.
    Rivers of love to you.

    Reply
  12. Logan

    Oh Jeremy I’m so sorry for your suffering and appreciative of hearing from you as you meet the challenges like the warrior teacher that you are. And so happy you have Kristina by your side. Please know how fully you are held in love and will look forward to your return home!!

    Reply
  13. Uma Simon

    Dear Kabir,
    Bless you for keeping in communication with us through these trials of yours. Talk about a hero’s journey even though that’s not your intention. I can only wish you the bravest heart and prayers that you continue to follow your intuition through this time. Blessings to your dear partner Kristina also. We love you so much and pray for you at our Wednesday morning darshans.
    In our hearts,
    Uma

    Reply
  14. Diane Nunn

    Always with you, Jeremy and so appreciative of your efforts to share so others may learn. It is painful for you to do but your great, caring heart leads you to do this.

    Love always to you and to Kristina.

    Diane Abbey Nunn

    Reply
  15. MaryAnn+Warren

    Dearest Kabir-ji,
    Thank you for thinking to update us all during this incredibly challenging phase in your Journey.

    You are Ever in our hearts, and we send waves and waves of Love and support in our daily thoughts and prayers for you. We look forward to your safe and comfortable return home next week. Love and Thanks to Kristina, too ~

    Reply
  16. Radha Baum

    Dearest Kabir,

    Much Love is with you each day along with many prayers, not only coming from me but so many others!

    I think of you often, and am so glad that you appear to be in good hands in the hospital you wrote from and especially with Kristina.

    Your courage and Love are extraordinary! Plus, you’re a great writer :)

    Love you,
    Radha

    Reply
  17. Parvati

    Dear Kabir,
    You are like the quintessential cancer warrior… what an arc your life has followed, from boy with guitar to father dying of cancer to being the kind and compassionate oncologist to the one doing battle himself with cancer. What extraordinary treatments you have undergone! You are a true testament to the human spirit, bolstered by Spirit. No matter how tired you get, or how much pain you suffer, may you always be aware of the plaid blanket the enfolds you and the voice that goes, “You are my beloved son and I am truly proud of you.”

    Reply
  18. Brandon Bays

    Embracing you in love and healing Kabir-ji. So much love coming your way and grateful to be included in this very challenging journey of yours. Your courage and vulnerability thru it all continues to astound me and I am so very grateful you have your beloved Kristina by your side to hold your hand thru all of this. May the grace of the Master hold you sweetly in an embrace of healing, beloved.
    In love,
    Janaki

    Reply
  19. Jack VanDervort

    Jeremy,
    May we bind your wounds with the soft gauze of our healing prayers for you. And may our prayers for comfort be as the scent of sandalwood upon your pillow. May our hymns for your restoration vibrate deeply into your being.
    As you have given to us so we return to you. You have a great force within you and we lend our strength to that effort.
    With Peace & Love to you fellow pilgrim & gentle brother.
    Jack V.

    Reply
  20. Brad

    I’m sorry to hear all that you’ve been through in the past couple of weeks, Jeremy. I had noticed and was concerned that there hadn’t been any update from you for more than two weeks. I hope that you will be able to go home soon and will be able to rest and experience some relief and comfort. I pray for that for you, and for the vismodegib to bring good things. Blessings, Jeremy.

    Much love,
    Brad

    Reply
  21. Billy & Gail Pearlman

    Kabir,
    We send you and Kristina all our love. Please know that we hold you in our hearts and send you our prayers for the courage, strength, and mindfulness that is necessary for you to continue to walk the path that you are on. We can’t begin to understand how you’ve been able to endure what you’ve been through, and yet you have dug deep and found that inner strength, day by day, step by step, necessary to meet the challenges facing you. And you have done all this with an open heart and mind. You have set a model for all of us who are aging and dealing with infirmities to emulate. Keep fighting the good fight and know that there are hundreds of us holding you in our hearts and sending you our prayers of love and healing.
    All our love always,
    Billy & Gail

    Reply
  22. TaraNaga/Rita

    Enormous courage and deep abiding faith has been your constant companion and you are clearly doing well in respect to the attitude you have maintained and the clarity of your descriptions.
    I hold you dearly in my heart and want you to know the your noble posture does credit to this journey.
    TaraNaga

    Reply
  23. Susanne Malles

    Dear Kabir,
    Thank you so much for letting us share your journey. May you always feel the love that you are made of.
    Serenity, Surya Ma, Susanne

    Reply
  24. Diana Tripp

    Your courage and persistence will never stop amazing me, Kabir. What an intense journey through just about every aspect of illness one could imagine. I so honor you and your process – as well as Kristina’s. I hold you both tenderly in my heart. Your story stops me completely and all i can do is rest in the silence and stillness – and pray for whatever needs to occur for you, to simply show up. You have blessed us all in your sharing – and I hope you feels the blessing of our love.

    Sending so much love,
    Diana

    Reply
  25. Linda kingsley

    Your journey brings tears to my eyes. I am praying for you to get some relief and find peace. Gentle and sincere hugs. Linda

    Reply
  26. shana parker

    Blessed Kabir-la
    What to say about a journey that has taken you beyond the limits, tested you, opened you and brought you outside of your suffering body and back again. All the love that surrounds you and that flows from you is the stuff of miracles. I can be counted on to hold the space for THAT.

    And to the Kristina girl I can only say- your capacity to hold steady in your being while the world both falls apart and lays itself on your shoulders is seen and applauded and is a model for love.

    loving you both,
    shana-la

    Reply
  27. Kevin Mulshine

    Jeremy
    I am just one of so many thousands of patients and caregivers that you have profoundly touched. Your care and guidance through the years definitely emboldened me in the cancer journey. Now your transparency into your own journey is another fantastic gift for all of us.

    I am praying for you to be touched by the same love and care that you have given others. When your cancer journey is marked by one constant PAIN, I pray for your first day of comfort and health.

    Kristina
    I have met you but do not know you. Thank you, Thank you, Thank you.

    BStrong
    Kevin

    Reply
  28. Mirabai

    Oh Kabir, what a surreal descent into the underworld. I am picturing your pain in my own bones, your apprehension in my gut, your wisdom and courage and curiosity filling my heart. You are not alone. We are all lifting and holding you close. Please touch Kristina’s holy feet for me.

    Reply
  29. Kathryn

    Dear Jeremy,

    I pray daily for your peace, strength and courage. Prayerfully thinking of you and Kristina that you are aware of the spirit working in your life. Sending much love and blessings to both of you.

    Kathryn

    Reply
  30. Amy Collins

    Dearest Jeremy,
    After reading this, I am struggling to find the right words to say, so will again say what I have said before – that I am so very sorry that you are suffering and battling this cruel and unfair disease. I’m relieved to know that your pain is better and that you have access to so much support and such innovative, cutting-edge treatments like Ketamine infusions (a treatment I didn’t know about and I thank you for teaching me medicine in the midst of what you are going through). I genuinely mean it, when I say that my thoughts are with you often and I hope you get back home soon.
    With love and healing thoughts,
    Amy

    Reply
  31. Becky L. Parrish

    Sending love and many prayers for healing and wellness for you and Kristina. May you get home to Max. I bet he misses you. Wishing all the Love, Prayers, and best wishes from my home to yours.
    Love,
    Shorty

    Reply
  32. cielo

    HI sweet friend, thinking of you today, and I thought to just send you love on this community space that seems to be the best way to send you love and hugs over cyber world! You’re in my thoughts daily, and am burning some cedar, bowing my head, and loving you in my heart.
    How can we help? How can we love you in the best ways possible that may support this time? Please please let us know. You’re truly a wonderful man, and we hold you close!
    XOXOXOXOXXO
    CIELO, Kaiya, and William

    Reply
  33. Carolyn Lee

    Hi Jeremy: Your strength, courage and wisdom are inspiring. Love and prayers coming your way now and always.

    Carolyn

    Reply
  34. Bev Paul

    A little note to let you know you’re very loved. May this day include something to make your heart sing. :)
    Love & blessings,
    bev

    Reply
  35. Nancy Rumbel

    Hi Jeremy,
    Just thinking of you today and hoping that you are enjoying a beautiful peaceful and restful time. Spring is here in the Pacific Northwest with all its glory – lovely greens, tulips, budding lavendars and chirping birds. I am working on learning more birdsongs to bring into the fold of listening. If you listen in your heart I know you can hear and feel it too! Much love to you!

    Reply
  36. Greg Plotnikoff

    Jeremy–
    Thank you again for finding the energy to share this experience with us. I am taking the liberty of copying your blog entry to my pain management colleagues. I truly believe that IV ketamine is a crucial element in the future of pain management. I used it all the time in pediatric ER care but was told to never use it in adults because of creating/unleashing psychoses. Now we know that the setting, the context, the emotional support and, if necessary, the use of benzodiazepenes make a difference. Your description is the best I have ever read and I want many more doctors to read it. Thank you!
    With gratitude and love,
    Greg

    Reply
  37. Reuvain

    brother,
    thank you for this last sharing. i’m feeling for you in all you’re going through. i love and miss you, and am, as always, sending big love to you.
    hugs,
    reuvain

    Reply
  38. Richard Furr

    You are a beautiful man, Jeremy. Thank you for all that you have contributed to me and so many.

    I am sending you love and blessings as you go through this time.

    Reply
  39. cielo

    HI there Jeremy,

    I am sitting by a crackling fire, the mountains surrounding us. I am thinking of you so much today, your smile, the wisdom and deep experience you have, I have tears forming, as I miss you and I miss Kristina too.

    I have to admit, life is a whirlwind often in my mind, and time passes, and things change, and grow and shift. You are someone I would like to share time with, even if it is a quiet hug, and a gaze into your eyes for just a moment. I would like to hold your hand for a moment and sit under the trees, knowing our friendship no matter how long or short it has been.

    I am eagerly scrolling through your blog looking for your writing and your sharing, because well, I miss you, I miss both of you. I thought you should know this, that you have so much importance in my life, in William’s life, in my little Kaiya’s life, that you should know. That you should know my Love is there, my friendship is there, my heart is with you both. I want to know if I can help in any way-please let me know if I can.

    I know that through struggle, and in my own struggle often I haven’t had the space to reach out, and I hope that you know that doesn’t reflect how much I care, not being able to walk slowed me down for a few months, but I am up and out and about again and am present.

    You’re thought of, loved, and I think of you in the mornings while burning cedar, and my prayers are hopeful and bright with you dancing in them.

    I LOVE YOU! I LOVE YOU BOTH!

    Cielo Lyn

    Reply
  40. Charley Cropley

    Jeremy,
    I want to come visit you. I am not finding a phone # for you or Kristina.
    I don’t know where you are right now. I miss you. I want to see you.
    What can I bring you? Love, music, movies, comedy, flowers, sacred poetry, food, smoothies, juice…
    I love you, man.

    Reply
  41. Trishul

    Dear sweet Kabir…..We’ve known each other for almost a lifetime and have gone through many journeys together…some joyful, some painful and every emotion and state of being imagined and unimagined. I am with you through this journey as well, constantly holding you in my heart and my prayers. Just as Sats did for us, you are showing us the way through your courage, your love and your persistence in finding a deeper connection. You and Kristina as blessed to have each other…she is the Goddess you have always been searching for and you her Krishna. I love you my dear heart.

    Always,
    Trishul

    Reply
  42. Nancy Rumbel

    Hi Jeremy,

    I was thinking of you this afternoon. I hope that you had a good day! The weather in Colorado I know has been quite all over the map — my daughter, who lives in Boulder, showed me photos of the snow! Here the lilacs and wisteria are in full bloom – the scent is quite heavenly.

    I am hoping that your treatments are working and that you are free from pain. I hope that you are surrounded by loving people and able to enjoy those things that bring you comfort!

    Hugs from afar!!!!

    Nancy

    Reply
  43. Karen Weihs

    Dear kindred spirit Jeremy,

    Your inspiration to those of us who walk with cancer patients each day lives on in the work you did with us in Tucson, at the University of Arizona Cancer Center. It must seem a distant memory to you know, but I want you to know you live on in our hearts and in the people we serve a bit better because of what you gave to us.

    I just caught up with your blog after months of being “away” and learned more about your deeply spiritual connection with Christina. It fills my heart with gratitude to know you are closely and truly loved.

    I send most tender and loving wishes for your comfort.

    Namaste,
    Karen Weihs, Tucson

    Reply

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