Calling in More Support

Tuesday I met with my oncologist who revealed that my recent CT scan shows no change from 6 months ago. Actually, no change from 1 1/2 years ago, when I was first diagnosed. She agreed that I could go another year before the next CT scan, and warned me that kidney cancer is slow growing, something that she always does. In other words, don’t get your hopes up, you are fucking going to die of this thing, and don’t you forget it. Not quite that bad, but that is her essential message. She’s a nice woman and means well. She is limited in her imagination. That happens to some doctors, I’ve found.

Today I decided to enroll in hospice. Hang in there with me. No one, including me, (except maybe my oncologist, come to think of it) thinks that I will be dead in 6 months. However, I need more medical support. Hospice will send a nurse out to my cottage every two weeks, and I can talk about how the cancer is affecting my life, and get access to their extensive experience and resources. Medicare provides this for as long as I want it, given my diagnosis. So even if I live another 5-6 years, I can still be enrolled and not kicked out, as long as I am “not gaming the system”.

Eric really cannot do this for me; we neither know what the hell is going on at this point, or what to do about any of it. And my oncologist can only do surgery, chemo and radiation: the only 3 tools in her tool box. I can’t do any of that, for various reasons, and she agrees with me. So, this is my solution for now.

I am so tired it’s shocking and that hasn’t changed much. This is not the tiredness of being old, or run down. It’s very hard to describe. On some levels, I feel like I’m actually getting better, but the fatigue never shifts. It is crushing me slowly.

When dying is on the table, there is suddenly work to be done. Wills updated, various forms to fill out, powers of attorney and so on. I want to choose a cemetery with Eric, which naturally he doesn’t want to do. I look forward and have no idea how much time I have left. He looks forward and assumes I will be around for at least 5 years. Maybe, but maybe not. So the work is on multiple levels, and seems endless and overwhelming and I am desperate for help.

So, I’m going to try Hospice and see how it goes. They are open to alternative medicine, and support that, work with it all the time. This feels like a huge relief to me, even though it’s also disconcerting, a little scary. Reality check.

Am I still aware of the shimmering grace thing? Yes, I am. Am I grateful every day for small joys? You bet. Do I love all of you? Yes, I do. But I need some help in the medical realm. Even if it’s just for a few months until things even out again.

So, here goes.

PS: Remember “no change” report? I ordered the details from the CT scan, and one whole lesion (out of 5)in my lungs has disappeared. As did the cancer in the lymph nodes 6 months ago. Note to other cancer patients: try to always ask for the detailed reports. This is incredible news, and my doctor didn’t even mention it. I attribute this change in my lungs to the tremendous skill of my Tibetan doctor, Dr. Tenzin. And the Medicine Buddha and Green Tara, and all the prayers coming my way.

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Grace, take 2.

The Shimmering Grace thing seems to be still working. I ordered a book quite awhile ago with nothing but the tittle to go on: The Power of Grace: Recognizing Unexpected Gifts on our Path.  (By David Richo)  Just shimmered at me while I was ordering another book on the Shambhala website.  It has been quietly living on our coffee table for months.

Meanwhile, I decided to have cataract surgery as a vote for even having a future in which to see anything, shimmering or not.  And now my next CT scan is on the immediate horizon, this Friday.  We’ll know next Tuesday what’s what.  The surgery went well a week ago but was stressful for a number of reasons, none of it too extreme. Nothing miraculous yet, but after my second eye is done, I am told I may be able to read without glasses.  We’ll see.  I haven’t been able to read without glasses since the 4th grade, so that would be fun.

My life is extremely limited now.  I have about 4 hours of energy a day.  Mostly I do laundry, make the bed, clean up the kitchen, water the gardens, comb out more loose fur from Tara’s heavy coat, walk to the village to pick up our mail, and I’m done – down for a 3 hour nap.  Talking on the phone is okay if it’s only one or two people, but in person visits wear me out after about one hour or so.  Usually in the evening I have another 2 hours or so of energy left.  Meeting with any groups over 4 people are a challenge.  Fun, and I love it, but still, a challenge energetically speaking.  So, living in a life the size of a postage stamp!  It’s still all good because it is, well, living.

So many people want to visit me now, it’s both daunting and also amazing to me.  I have no idea how to triage this, and often I actually just forget who wants to see me.  I need a list!  I can only realistically visit with one or two people a week, or less.  For people coming from out of town, we make room somehow.  Some of these journeys are perilous in nature so we honor them as best we can, floored by so much love.

What I’ve noticed is that people who do visit tell me, with some degree of surprise I guess, that I “look so well”.   Even the Tibetan doctor Dr. Nida said that my life force pulse is strong.  Good to hear.  More on that encounter another time.

My new, internally guided map making ground to a halt, though. I stopped the intense efforting I was doing, that was so successful, and then shut down, started eating chocolate chip cookies and reading novels.  And yes, resting deeply.

And that’s where the book, The Power of Grace, comes in.  I picked it up, finally.

Here’s the quote that caught my attention:  “Too much reliance on effort is one danger (a whole section on that, much to my surprise.  This book is exactly addressing where I am right now.)  but another is too little trust in the need for it.  Grace loses its meaning when it does not stir and spur us.  We then believe we lead a charmed life instead of being required to lead a responsible life.  When grace and effort work in an integrated way, we see that grace is a cue to us to exert ourselves.  We can be so pleased with grace, however, that we become overconfident.  We imagine that grace will keep coming our way with no follow-up needed on our part.  This is quietism. ”

Which is the opposite of activism, excess focus on effort.  Some have an idea that their effort will result in merit, which this author discounts pretty easily, both historically and throughout various spiritual paths.  Grace is pure gift, it’s not a reward for effort.  You don’t earn it.

The way out of this is to cultivate universal love, beyond merit or demerit, beyond too much effort or too little effort –  give myself utterly to loving -kindness, and let my heart lead the way, one step at a time.

Well, okay then.  I wish I would remember this, and not keep forgetting.  But I do.

About the upcoming CT scan?  I am completely freaked out.  Last time, in February, I went from a Stage IV to a Stage III.  This time?  Who knows.  I have some reason to believe that it will not be good news.  And also some reason to believe that it might be a fucking miracle.  I don’t think there’s much room for it being both/and but again, who knows.

Sending all of you oodles of love, and deep respect for your journeys, whatever they are.  Stay well.  Follow your heart.

 

 

 

 

 

 

 

 

Burn the maps

No maps for the realm I live in now.  I no longer know if I am living or dying, there is literally no way to tell.  I feel better in the past few days, and even went swimming a day or so ago with a new friend who is fearless, and also has a Stage IV cancer.  We celebrated our day of feeling well!  Two old gals having a great time!

But I remember all too well my recent “episode” as my primary doctor called my collapse a month ago. And the sense of my death there, waiting.  One new possibility to explain it: maybe I had a TIA, or small stroke.  No way to know, but it does kind of fit.  Bizarrely, this actually sounds like good news.  Maybe it’s not the cancer, coming back with a vengeance.  But I really don’t know.

This evening I walked over to the Rose Villa prayer group and while there, not my intention in going, I asked for help in discerning how to proceed in my life.  Showered with prayers!  I’ve never been a good praying out loud type person.  We didn’t pray in my childhood, no one I knew did that.  As an adult, I have all sorts of practices that I use in a skillful and reverent way, but praying out loud isn’t one of them.  It’s a great comfort to hear, and my heart is full of gratitude. An easing up of the feeling that I’m in this all by myself.

Here’s the thing:  how do I proceed in a sustainable way?  Without too much efforting, but with enough that I do get stronger over time.  Without being so careful that I no longer know my actual boundaries, but without stepping into another episode, either.

There are no maps here, no one to look to for advice, no tried and true resource.  No one knows.  What’s interesting is the shimmering, the shimmering grace I named this blog for.  That shimmering is saying “you need to turn inwards and seek your own deepest wisdom.”  That keeps coming up over and over again, in a wide variety of ways.

In Buddhism, guru yoga is a practice I’ve tried off and on for decades.  In it, you imagine the Buddha, or Green Tara, or Jesus or Mary, or whatever form of the Holy that inspires you – in front of you.  From their head a white light flows into your head, filling it with white light.  A ruby red light flows from their throat to your throat, filling your words with their wisdom.  Lapis Lazuli blue flows from their heart to fill your heart with their compassion and loving kindness.  And then you rest in this direct connection.  Not as easy as it sounds, but powerful.

Now I have been introduced to a variation of this practice by Christiana, my Tibetan healer here in Portland.  For this variation, I visualize Green Tara (for me, because I have a devotion to her) inside my heart, inside my own body.  Her white light fills my head, her ruby red throat energy fills my throat, and so on.  It’s a little more complex than this, but you get the idea.  Filled with her green light in my heart, I rest with that and at some point, I will ask for guidance and direction, from within my own soul.  It’s promising. And not easy to do.

One easy answer is to simply live in the Now, without any map into the future at all.  Yes, but that really doesn’t answer my dilemma of how to get stronger in a sustainable way.  One of the loudest voices from my family is to override all pain and all obstacles with a force of will.  Just do it.  That mantra.  I did that, and went from a IV to a III.  It worked, I was successful against all odds. However, I also discovered that in so doing, I was draining the energy pool underneath my whole being, the Jing energy, faster than I was replenishing it, if that is even possible at this point.  Some practitioners of Chinese medicine say that Kidney chi cannot be replaced.  When you run out, you die.  Others say that it can be replenished slowly and with great care.  That is what I want to do, or try to do, now.  But who the fuck really knows if it’s possible.   No one really knows.

So, more alternative docs on the horizon as I check out a few, slowly.  I shall see Dr. Nida who is a master Tibetan doctor coming to Portland in a few weeks.  Restorative yoga seems right to me now.  Laying outside on the grass in the sun, check.  Practicing a little chi gung, check.  Eating with mindfulness, a nourishing diet, check.  Walking around the Rose Villa campus when I can, yes.  Meditation, check.  Adrenal support capsules, okay.

A fragment of a new map is forming, one little piece at a time.  I can do this!

Thank you and blessings to all of you who offer me support in such a tapestry of ways, weaving a blanket of love to catch me when I fall.  May you know a deep and abiding wellness, the joy that lies beyond all suffering,  throughout your days.

 

 

 

 

 

 

 

Green Tara steps up.

Green Tara and I have been good friends for decades, she more constant than I.  Who is Green Tara?  The masculine Buddha cries a river of compassionate tears, and from that river emerges Green Tara, wisdom personified, one leg set down ready to protect, to intervene, to help.  Green Tara claims that she will continue to be reborn as a feminine figure until all suffering has ended.  She is, for me, a mixture of Mary and Sophia, the Christian image for wisdom, and so much more.

One of my stalwart friends, Renette, traveled to Tibet and Nepal years ago; I was to go with her and another, but I fell and broke my shoulder which then slightly crushed together.  I had to stay home, so asked her to bring me a Green Tara tangka, or picture.  Which she did.  Boy, did she ever! It’s hand painted by the head of a Tibetan tangka painting school in Kathmandu.  She shines and shimmers and keeps me company.

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At one time, I chanted over 100,000 mantras to her, counting on my yak bone mala which is like a Christian rosary only with counters, 108 beads.  Devotion is an alien concept for most of us in the West but for Tibetan Buddhists, it’s one channel or doorway into the absolute realms. It’s real. At some point, I participated in a Green Tara Empowerment and brought her along to be blessed.  Somehow or other, I developed devotion to Green Tara, so here I am.

Towards the beginning of July this year, after we moved to Rose Villa, I put my finger on her hand which is open, on my tankga, and prayed: “Help me!”  It’s like plugging into her unique channel or current, and opening mine up to her.  Boom! Electric sizzle ! Help poured into me on every level, completely blessing me through friends, family, resources known and unknown, pouring in to me.  I heard that it was going to take time, and to rest.  Staggering experience.  I’ve only recently decided to speak of it here. Lasted all of about one minute.

So, a month or so later, I decided to see if I could find a doctor of Tibetan medicine here in the Portland area.  Tibetan medicine is similar to Chinese medicine but coming from the Bon tradition in Tibet.  I asked many people. Nothing.  I asked my shaman friend who also put out the word, and was recently connected to a lovely young woman who is a student of Tibetan medicine, as well as Chinese medicine at the Naturopathic College.  She arrived at our cottage carrying water that she infused with a protective healing mantra, and a Medicine Buddha practice that is fairly simple. I need simple these days.

I fell promptly in love with her, of course.

Now, here’s the miraculous.  She is bringing to Portland a teacher of Tibetan medicine, a doctor who graduated from the Tibetan Medical College in Dharamsala, India.  She practiced for many years under Dr. Kunga Gyurme, the personal physician of the Dalai Lama.  She travels all over the world treating patients and teaching.

And I have a private consultation with her this Friday.  I am amazed, completely amazed.

And bow to Green Tara in profound gratitude.

Delusional?  Who cares, if it works.  I am not looking for my cancer to disappear in a cloud of magic dust, but seeking a way through this thicket with trustworthy companions.  It doesn’t really matter to me at this point whether I live or die anytime soon.  I’m just showing up, and sharing as much as I can along the way.  Who knows.

So, if you are one with cancer and are lost like me, don’t follow me but find your own seeds of devotion, your own due north, your own internal compass, what you resonate with, who you trust, and follow that. Send us reports, if you can, along the way.  I’d like to know.  It may be important.

Send smoke signals.