A wing and a prayer

Thankfully, the prognosis for the kind of cancer I was diagnosed with last fall, Stage II HPV-related Squamous Cell Tonsil Cancer, is good. 

Now that I’ve recovered sufficiently from surgery late November to remove the tumors — one on my left tonsil and a cancerous lymph node on the left side of my neck — I’m scheduled to start treatment next week. Depending on the results from tomorrow’s scan, I’ll be receiving radiation five days a week for the next six or seven weeks. And I’ll be getting chemo once a week. 

After my meeting with Dr. Kim, my radiation oncologist, in her office, I met with the lead radiation tech and one of her colleagues. They had to make a new mask for the treatment because the one they made last fall, weeks before the operation, no longer fit.  My face is not as thick as before . . . and, even though my neck’s still a bit swollen, I seem to have lost my extra chin along the way. 😉

Though I’ve put on more than 10 pounds post-op, I’m a good bit skinnier than before. (Folks keep telling me how good I look, which I guess you could say is one of the positive aspects of all of this folderol.) I can’t remember the last time I was trying to gain weight, that’s for sure.

Once again, Dr. Kim reviewed the side-effects, which are due to manifest after a few weeks. She said that it’ll take about as long to recover from the radiation as it does to receive it. The radiation effect accumulates so that the maximum effect is two weeks after the end of the treatment; the peak for the chemo is further down the line.

I said something about my post-op experience preparing me for this, at which point Dr. Kim solemnly informed me that this would be worse . . . and last longer. Whether the course of radiation lasts six, six-and-a-half, or seven weeks, this is going to suck. 

By all accounts, everyone I’ve spoken to — the surgeon, radiation oncologists (both of them), hematologist-oncologist, radiation tech, and the nurse navigator on my team from the cancer center — this course of radiation is one of the worst, if not the worst — most difficult and painful — treatments they do. They were also quite clear that patients respond differently: some folks get through it with minimal difficulties speaking, eating and swallowing while for others it is disastrous. 

Be that as it may, the side effects are wide-ranging and they last for quite a while. My sense of taste will decrease, disappear, or change (to become less pleasant); this can take months to return. Or these changes can be permanent. I’ll have a sore throat and sores in my mouth which will make swallowing, eating, and talking difficult. For who knows quite how long.

Radiation will affect my salivary glands as well so my mouth will be dry for a year or so. I’ll need to keep my mouth moist — sipping water, drinking a medicinal potion, and using ‘dry mouth’ products. Is that the term— dry mouth — because, somehow, ‘wet mouth’ doesn’t have the same appeal. Due to the concurrent changes in the bone, including my teeth, I will have to be super diligent about brushing and flossing.

As demoralizing as it was to learn about the side-effects at first, I appreciated that no one’s sugar-coating what I’m in for. I would rather know; I’d rather prepare realistically. Between a vast field of foolhardiness and the unending terrain of terror, I’m laying down a path, steadfastly finding and taking the next step.

Even so, it seems likely I may be sitting still or at least staying put long enough to address more issues and ideas that inspire and instigate. Through what’s to come, or at least most of it, it’s the wherewithal to continue writing that I’m working toward. Looks like I’ve got quite a bit yet to say. About the past, present, and future of Moshe’s method, for instance. Then there’s community, conduct, cybernetics systems, and the other means by which coordination manifests

Fingers crossed.

Mind in Motion is made possible by the amazing group of folks who work with and support me. Trey, Lisa, Jade, Gifford, and I have been building our team over the past several years to create a platform for the future of Feldenkrais®, one that brings together the latest advances in technology with state of the art approaches to learning. So that we can continue to make these precious resources available and also keep developing the projects we’ve started while I’m dealing with my cancer treatment, I’m asking for your help and support.

We are making it possible for you to support our work either by signing up for a year’s subscription at $5 or $25 per month or, if you prefer, by selecting the amount of your choice. The funds you contribute will be used to pay salaries and bills. This way the team will have jobs for the duration and there will also be one waiting for me when I am ready to come back to work.

Finally, whether you decide to sign up for a volunteer subscription or not, I truly appreciate you reading my blog. Please do respond and let me know what you think.

As I wrote above, I plan to continue writing about Moshe’s method. (I’ll also be occasionally keeping you posted on my progress in my blog post.) 

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Responses

  1. Dear Larry, I will join you in keeping my fingers crossed on this rather difficult journey of your treatment and recovery. I love reading your blogs as I love the way you write, your choice of words, your humour and insights. I am happy to donate something towards the cost of running mind in motion as you have always been generous with your material. The best of luck! Sabine

  2. Offering you my wing and a prayer and fingers and toes crossed for the easiest way through this next phase. Thanks for being such a compelling chronicler of both your recovery and your perspective on Moshe’s method. What’s the other means by which coordination manifests?

  3. Larry, thank you telling us what is coming up for you with your treatment. I am hopeful you are one of those who makes it through without the worst side effects. Sending you much love and looking forward to everything you have to say about the Method. Your voice is so needed.

  4. Dear Larry,
    Thanks for letting us know where you are with treatment and what the road ahead may look like with some of the possible forks. I spoke with the Chairman of the Committee of Acupuncture (I’m the Vice-Chair!) who is the lead acupuncturist at Dana-Farber here in Boston- We’ve shared clients before. His specialty is treating people with throat and neck cancers with acupuncture (and maybe herbs, I don’t know about that)- and when I asked him about your cancer he described it exactly as your docs did- incredibly successful long term and an intense treatment plan. He has written and developed the protocol for easing some of the side effects and maybe quickening how long the effects last- and he said if you were getting acupuncture he would be happy to speak or write with your practitioner to share what he has learned. He definitely felt like doing acupuncture conjunctively is useful- not sure if that is an interest of yours but I know Santa Cruz is chock full of excellent practitioners and I’m sure you know or have access to many. If you are interested in hooking up your person with my colleague I’m happy to make the introduction.
    Wishing you all the easiest forks in the road and sweet healing, Nancy Lipman

  5. You are amazing and generous. Thank you for sharing not only your Feldenkrais knowledge but also this personal journey you are on. You set an admirable example of rising to what life gives you, staying open to possibilities and continuing to learn & adjust along the way. Please continue to share as you are able.

    1. Much obliged, Nora.

      As I wrote, I’m laying down a path, steadfastly finding and taking the next step. And, as you wrote, I’m continuing to learn. Thanks for accompanying me on this journey.

  6. Larry,
    You will be in so many people’s thoughts and prayers, as well as my own.
    You’ve inspired countless lives in your years of contribution to our Feldenkrais community, not only with your experience and keen insights of the Method, but with your warmth and humanity – you are certainly not alone on this journey! Many many wings and prayers will be following you! That is powerful!

  7. Thanks for continuing to write posts. Your site and the Online class I did with you have been a valuable part of my learning. Very sorry to hear you’re going through this, and wishing you as much comfort as possible in your treatment and healing.

    1. Thank you, Betsy, for reading my posts and for responding. And for the props and your good wishes, as well.
      I’m delighted to have contributed to your learning and look forward to continuing to do so.

    1. Are thumbs fingers?
      Do you cross them with each other?
      Makes it difficult to dress, doesn’t it? Just thinking of buttons is exasperating, ain’t it?

      ‘-)

      All silliness aside, thank you, Mira!

      1. Dear Larry,
        in Germany we say indeed instead of cross fingers: “I press my thumbs for you!”
        As a breast cancer surviver I have an idea of what you are going through and I do press my thumbs for you that you manage to go through this process with dignity and as comfortable as possible. It is incredible how effective these diseases can be cured nowadays but for your minds and hearts well beeing you have to take care yourselve – at least in my country. But it is realy also a chance to learn a lot. I used all kind of resources for instance Jack Kornfields “guided meditations for self healing” I found very helpfull.
        Best wishes! Eva

  8. Larry, You have given so much to so many, and we are taking this devastatingly tough journey with you. So wrap your community around your shoulders and let us comfort you in your time of need. Glad to be able support you in what little way that I can. Wishing you well and sending you healing thoughts.

    1. Dearest Jacquelyn –
      Thing is, I really suck at asking for and, especially, accepting help. This is w-a-y out of my comfort zone. So I know it’s this is the learning edge, one of the lessons for me.
      Thank you for many ways in which you support me, my work, and our community.

  9. Precious Larry, My heart swells with appreciation for the gift of you, your thought provoking writings, your in depth ATM inquiries, your generosity as a teacher. Getting through on a wing and a prayer is a well traveled road my precious mother trained her children to embrace over & over again…and it is reliable. So I envision you now in my heart on the wings & prayers of all your guardian angel folks, of the heavenly & earthly planes as you step forward on a not so easy road. Be gentle and absorb the Grace like a sponge. With loving thoughts & powerful praying hands, Kachina

    1. Dearest Kachina –
      Thank you for your recognition and appreciation. And for letting me know you share the wing and a prayer approach.
      I appreciate your wise and compassionate counsel.
      I’m grateful.

  10. Dear Larry this is susie fraser from adelaide i will be sending you all my best wishes and healing thoughts. An artist i know from Melbourne Alex Danko went through what is in front of you and is now several years on the other side of treatment . Keep writing .
    X

  11. Larry, Thanks so much for blogging your information and thoughts on both your treatment and the method. I very much appreciate being able to learn from you, and wish you all the best in your treatment, and especially hope for minimal side effects. It’s clear that you will continue to learn and make the best for yourself and everyone else and you move forward. Gail

  12. Hi Larry
    Prayer is an amazing tool for healing, surviving what life throws at us and your desire to share is a blessing to the rest of us that have and continue to learn from your life experiences. For me personally being back learning under your teaching has opened up vast avenues of new adventures.

  13. Dear Larry, I send you all my goods wishes for the going on. An I am thinking that you are as strong as to manage by yourself not to be to much affected and I hope you still going writing.
    Wishing you well being.

  14. Dear Larry, fingers crossed for you here in Switzerland as well! It will be challenging to give FI that way. But since I’ve learned many neat FI things form you – no problem. By the way: “you” are hanging around very often when I’m working 😉 Thank you for your clarity and humor in thinking, teaching and writing! Love your blogs! All the very best to you! Petra

    1. lol, Petra!
      Have you noticed that it’s really difficult to type with your fingers crossed, too! (-‘
      I’m so that what you learned from me has proved memorable and useful. Thanks for the shout out.
      Gratefully, Larry

      1. Hi Larry,
        I have only just discovered your medical situation as I have been supporting my husband through his sarcoma journey( 8 years so far!) 5th operation last November. Reading your predicted side effects, I can confirm it’s not a pleasant journey following the medical offer of chemo, surgery and radiation BUT once you accept it, make the best of remedies that ease your suffering and keep your sense of humour which one learns to share with fellow sufferers and their carers, you meet along the way. 🙂
        Mucosoothe manufactured by Perrigo, Australian medication, still sits in our medicine chest(which I must tell you is almost a pharmacy in itself, not much found useful 🙁 )It’s an oral gel with 2% lignocaine to anaesthetise your mouth and upper gut when you get mouth ulcers from chemo but need to eat. Wish I could pass the bottle directly to you as it is expensive! A pack of thick Metal straws are great, NOT expensive! Use a different colour for your various liquidised foods(easier when your mouth hurts chewing) protein shakes and etc. May the journey be made easier with the support of our community beside you. I have spread the word to the Australians (AFG) I hope the effect is quick and to your benefit.
        Sending much love , Mazal and good health in the future
        Renée
        PS feel free to contact me for any practical questions. I declared myself Professor,Dr after all we’ve been through I know to question every medical decision so as to avoid unnecessary interventions or mistakes. I don’t want to bore you with the amount of Iatrogenic illness Mr P endured with good intentions by the Medicos.

        1. Hello Renée –
          Thank you so much for what you wrote.
          I didn’t know you’ve been accompanying your husband through his healing journey. I appreciate you sharing what you’ve learned, offering your advice, and, especially, your support and encouragement.
          As for Mucosoothe – my radiation oncologist prescribed the US equivalent for me, and I just picked it up yesterday. Thanks for the recommendation about the colored metal straws – excellent tip! Post-surgery I got to learn a lot about using the Vitamix juicer to make smoothies, soups, and ices, so I’m ready for the mushy meals or, at least, more prepared than I woulda been without that experience.
          You’re so right that the support of our community is incredible. Thank you for helping spread the word.
          Week three of treatment starts next week. So far, so good.
          Love & gratitude,
          Larry

  15. Dear Larry,
    We are waiting for you in Vienna. Meanwhile, all of those wonderful lessons for the tongue are going to be useful in the coming months….and the eyes….and the fingers….and crossing the midline…cardinal directions of the head. You have such a great head on your shoulders-thank you for always sharing your love of life, the pleasant and the unpleasant with us. Much love and courage friend x

    1. Hello Mhairi –
      I’m looking forward to returning to Vienna later this year.
      And, yes, I’m looking forward to revisiting those ATM lessons and discovering new ones.
      Love & courage,
      Larry