Energy not quite so low

Entered the neutropenic phase yesterday. This is when white blood cells are very few and immune system can’t do much to protect the body, which is expected after every cycle of chemo as par for the course. So precautions are taken. Last time, an infection landed me in the ICU. That infectious process is still with me, and could be for the duration of chemo, so I’ve become a bit more complicated case than the docs hope for. Still, in 2nd day of neutropenia I’m feeling a bit better than the past few days. That could be because there aren’t any white blood cells to fight the infection; hence, less inflammation and other consequences of an immune response. Instead, five different antibiotics are keeping the infection under control. Still, it’s safer for me to be an out-patient rather than hang out in the pathogen rich environment of a hospital, tho I spend five or more hours per day there getting antibiotic IVs and whatever else might be needed.

Talking about life around the kitchen table

Sister Leslie has been here the past week, keeping an eye on me when Jo Marie can’t be here, shuttling me back & forth, helping to keep track of medical info, cooking & cleaning, shooting the breeze, and being all-round lovable. Also, her car has butt warmers. She had to give up a hockey tournament this weekend, but stays up with nephew Eric’s team via husband Chuck. Also learning about her work managing the database for a hospital in the UP.

On Friday, we had an important talk with Dr Thompson, our primary doctor (hematologist/oncologist). We’ve liked her from the start and she came through again. In a highly technical and specialized system like Mayo, where patient care goes along with research and teaching, we meet lots of doctors but not always the same one in each area of specialty (e.g. infectious disease or colo-rectal surgery). This can be disconcerting for us, as certain issues don’t fall clearly into one specialty or another (e.g. aspects of the infection and the leaky lumbar puncture of a few weeks ago) and we can’t tell how well they are being watched. I don’t have the knowledge to know what matters and what doesn’t. Jo Marie has to spend time away working, though she has been best at noticing when something is going wrong. It’s a major strain on her to take care of things at home, get hours in at work, and to keep a close eye on me and the treatments I’m getting. Dr Thompson responded with practical steps to increase continuity of who is watching what. So we are much more comfortable in this regard. After all, the infections are potentially dangerous and need close scrutiny.

Looking forward to white blood cells bouncing back, but that will probably take a few more days, at least.

May all beings appreciate those who make our lives better, wiser, and more loving. Please let them know while you have the opportunity.

p.s. Thanks for all the comments. I read them all and feel accompanied by each of you.

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22 Responses to Energy not quite so low

  1. karenkvasnicka says:

    Dear Santikaro, Your gentle words continue to inspire and encourage all of us on the path. When we are healthy we take so much for granted, so much of our daily life asleep and unmindful. You remind us to live, love, and breathe each moment. Thank you for the loving generous spirit you continue to share with us. We continue to hold you in our tonglen, daily meditations, and thoughts.
    with much love and peace to all beings,
    Karen from the Minden, NV sangha

  2. Linda in Seattle says:

    Wow. Your advice, Santi, about letting people know that they’ve enriched your life, and the bit from Karen about being mindful, ring so true. I’ve taken to working myself up into a frothing mess at work lately, but I’m quickly reminded of what in life is really worth getting wound up about when I log onto this blog. I think of you, your words, and your spirit, often. Love, Linda

  3. Mike Larson says:

    We have you in our thoughts constantly. Keep truckin’ my brother.

  4. charlie knower says:

    Good to hear you’re feeling better. Well written post, as usual.

    With care,

  5. Mary Bast says:

    Thank you for making my life better, wiser, and more loving.


  6. Kurt Rasmussen says:

    This blog is a good thing. You’ve become an important part of my thinking in a good way. You have my hopes and I think of you often. That’s all I’ve got for you.

  7. JoanRyan says:

    Hello my dear dear friend — I am thinking of you and Jo alot and sending you energy and love. I am awed by your calm and your serenity in the face of so much unknown. Hope I can arrange to come and visit soon – Joan

  8. sue says:

    Glad Leslie was able to help out this week. It’s amazing how family has the power to ease and strengthen us when we are a bit down. Sending warm and healing thoughts your way.


  9. Agustinho de Andrade says:

    Dear Santikaro,
    I’ve been following your treatment since the beginning and I send you my sincere wishes of good and fast recovery, in order you can be back soon in Brazil to visit us.

  10. Lise says:

    Thanks Santikaro for continuing to teach us, your far flung friends and students.

    Much metta to you and Jo and healing thoughts from your well-wishers in and around Oak Park.

  11. santi says:

    Yes, it was fun having Leslie around, even tho much of the week I wasn’t too energetic. We haven’t had so much time together in years. She was the energetic one, doing all kinds of things around the place, but it was still sort of a vacation for her.

  12. santi says:

    In a way, it’s easier to be serene with so much unknown. Too much trouble to figure out or plan ahead or speculate. Little unknowns are more seductive; they trick us into thinking we know what’s going on. Of course, there are times I wonder if ANYONE knows what’s going on!! Of course, there is relative knowing, like statistics and probabilities, which a place like Mayo — scientific medicine — has lots of. But I’m scratching my head over the real knowing (and a little chemo itch, too).

  13. patricia canan says:

    Dear Santikaro,
    My thoughts and prayers are with you each day for a speedy recovery. I remember you and Jo fondly from your days in Oak Park. Especially your teachings on those monthly Saturday meditation days. Very special. Thank you.

  14. Linda in Seattle says:

    What’s chemo itch?!?!

  15. Jo Marie says:

    Linda, don’t encourage him to elaborate… 🙂

  16. Bil says:

    Second THAT Jo…in other newz… THAT was a snowstorm. Santikaro we are taking pictures (mainly white with buried things) and perfecting a pink lentil soup we look forward to bringing to you when we can get out our front door again. Be well.

  17. lolarosa says:

    hi santikaro and jo marie, Laurie plus Diana Lion here. We are thinking about you, reading about you, wishing we could be there to help out. this is a long haul. Diana wants you to know that she’s sending you healing Qi every day as part of her daily practice. and we are both sending you lots of love.

  18. Rosana says:

    Dear Santikaro,

    also looking forward to white blood cells bouncing back!

    Thanks for sharing this diary with us. It’s good to know you’re being well taken care of.

    Your practice is great inspiration for me, dear teacher.

    May you be content. peaceful and healthy!
    Rosana from Brazil.

  19. Linda in Seattle says:

    But now, of course, my curiousity is especially piqued. Maybe instead of text we could get a photo and try to guess what it is?!

    Love from Seattle, where we need your snow!

  20. Leslie Hershberger says:

    Santikaro, since I heard from Joan, I’ve thought so much of you and have appreciated your generosity in sharing your blog. May your white blood cells multiply as quickly as snowflakes in the Midwest, my friend.

    On another note, I can’t tell you how often I think of your teaching when my practice gets challenged by frenzied, scattered thinking (yes, I saved the notes from the retreat you offered here in Cincinnati).

    Deep bows of gratitude, Santikaro…sending much lovingkindness your way. love, leslie

  21. cashton says:

    We had 9 prisoners at the Federal Medical Center this weekend on silent retreat. Gail Iverson from Common Ground and TCVC stepped in as the teacher since you could not do the retreat. All the staff personnel (up to the warden)at the prison were extremely cooperative and did everything they could to create favorable conditions such as our own space large enough for sitting and walking; meals were brought to us including supper so the retreatants could take their meal back to their cell and stay in silence; unintrusive “count” done twice a day; they made 20 small cushions for us and provided lots of blankets for the tile floor; good communication. Today when I visited with some of the participants they are just alive with new energy for their practice and a deepening connection as a sangha. When you are further along in your treatments and recovery they would love to meet you and I hope you can have this experience of “sitting inside” another time. We are all sending you healing compassion and loving kindness. Cathy Ashton

  22. Sfgeorgis says:

    Hey Santikaro,

    It has taken me about three weeks to find a way to leave a message – and managed tonight after 45 mins – call me “techy” if you want to!

    I have been watching your journey for the last month – and I am in awe of your courage and tenacity

    I am also learning so much from you – thank you for your sharing and your eloquent process.

    Prayers are with you and blessings to all those around you
    May the miracles of healing continue


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