Mystery

Coming home the other day, I discovered what looked to me like a pile of sticks on our cottage front door, about eye level, not moving.  Hmmm…  I walked closer, quietly, and discovered to my deep and abiding surprise a praying mantis!  I know that nature talks to us just like the Shimmering in the written word, so after supper, I pulled open my animal discernment books.  What is the message?

The power of stillness.  Meditation. Chi Kung, using life force energy to strengthen and heal, directing it through the body’s organs and systems, empowering.  

One new friend here at Rose Villa heard about this, and sent me a link for more divination:

Praying Mantis animal spirit will often appear when calmness and contemplation are needed, not to sit still, but to reach a conclusion to a situation so decisive action may proceed. Even though Mantis is the symbol of meditation and contemplation she is also the symbol of action and decision-making.”

Praying Mantis animal spirit is often seen when major internal and external life changes are taking place.

Meaning of praying mantis on front door: “Praying Mantis at the front door of your home is a strong spiritual message, asking you to look within and approach your inner feelings for contemplation. Soon you will be asked to do something you are not comfortable with. Bringing about the need to change in this area, to give yourself a better life, by doing so you will expand and grow your higher consciousness.”

So, that’s quite a set of messages, all of which are pertinent and relevant.  Amazing.  Mouth open type amazing.

A few weeks ago I learned some new things about my cancer:

  1. “Nothing has changed since your diagnosis in February of 2015. No CT scan followup needed for a year, instead of 6 months.”  From my oncologist. Who reminded me, as always, that kidney cancer is slow growing, not to expect much.
  2. I am no longer eligible for hospice, whether I want them or not.  No one will state that I only have 6 months to live.  This shifted just a month ago.
  3. Two of the five lesions in my lungs have disappeared.  To me, that’s change, but hey, I am not an MD.  (Thank you Dr. Tenzin, I attribute this HUGE change to you and your magic Tibetan bowls on my chest! Hope to do some more.)
  4. No one is worried about my fatigue, as it’s not considered life threatening.  I do.  Hence the praying mantis, as my question has been: Now what?  Can I live like this much longer? How?
  5. I am no longer thinking of myself as living with a terminal diagnosis, but rather living with a chronic illness, at least until or if it shifts back.  No pain, just prone to sudden collapse  with extreme weakness, so I can’t plan, and need to rely on other people for nearly everything now.  A new realm, but it feels the same.
  6. I need help learning how to live with this, long term.  Help!

And then, an old friend of mine contacted me a few days ago, out of Facebook land.  She is an  acupuncturist, teaches medical chi gung, is a practicing Buddhist, and was a hospice nurse at one time.  Much to my everlasting astonishment and gratitude, she is coming next week and we’ll figure out a chi gung practice for me to blend in with the practices that I am already doing.  I am open to whatever she might want to share.

Another dear friend is excited to provide soul collage here at Rose Villa; all I have to do is set it up.  That is a wonderful discernment process and has helped me for years and years.

Eric and I are planning a short vacation up on Mt. Hood towards the end of the month; a time away with great sweetness.  I need to be in wilderness where I can think clearly.

Help is on the way!  (Wasn’t that John Kerry’s campaign slogan?  How did he get in here? Egads. )

May all of you find a way into your own next breath, your own path to joy. We stand with each other, we do.

 

 

 

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.

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.

 

 

 

 

 

 

 

Well, okay, this is weird.

Tuesday morning Eric drove me to see my primary care doc at Providence, a woman I adore. I want to know what precipitated my episode of a few weeks ago, causing me to drop into deep weakness and feeling death.  So, blood tests (already back, nothing off) and a urine test (not back yet).  Maybe get a new CT scan early, before August.

As a precaution, I called Providence Hospice last week, and a nurse came out to do the initial intake so that I would have a file there, and would only need to push the “start” button to get that system involved, when or if it becomes necessary.  Still trying to get things in order so that I can save Eric as much as possible, when the time comes.

My primary care doc told us that my oncologist has signed off on me being ready for hospice, last week!  I guess the hospice nurse contacted my oncologist as a follow up.

That is just so weird to me, for all kinds of reasons.  Mostly just to hear that she thinks it is possible.  That word, hospice, attached to my name.  But also because I haven’t seen the oncologist since early in March; how could she certify that I am eligible to be a hospice patient?  I certainly wasn’t then, nor am I now.

Our best guess is that she figures I am going to die soon from this cancer, and can’t really do much if anything to help me.  So, perhaps she sees this as helping me out, something that she can do.  In her world, people are dying all the time, of cancer.  Poor woman.

I wonder if I need to find a new oncologist, one who has the capacity to entertain possibilities of a long, happy life for me.   Know of any in the Providence system?  Let me know.

So, a brush with death, an introduction to hospice, knowing that my oncologist is pretty sure I am going to die soon, and my internal resources are working overtime to take this all in, devise a new plan, and try not to start rushing myself in response.  Breathe.  And rebalance in what I know to be true, not what the docs might say.  Hard to do in that force field, however kindly meant.

Chocolate chip cookies are the preferred route at the moment.  O yeah.

And love, lots and lots of love, oodles of it.

 

 

 

 

Not This Time

About 1 pm today, I lay down on our bed.  I could feel how much effort was in my system, so I let it all go, just lowered down into the realm below effort, desperate for rest.  And felt my death there, a palpable thing.  So tired, I couldn’t imagine doing anything, even the thought of calling for help was too much.  I looked into death, my death.  Tears, grief, but even that was too much effort.  I thought of people I love, and people who love me, and realized that I, in that moment, didn’t have the energy to do anything at all.

I eventually called Eric and shocked us both by how weak I was, I am.  He said he had to finish a meeting, do something else, and then he would head home.  He knew it was real.  I called my dear friend Anatta, who was here in about 5 minutes or so.  She held me tight; it felt like I was leaving out of every pore, I needed an anchor.  She knew exactly what to do and kept me safe.

1. Here’s what I learned about dying, today.  It seems to me that there is some kind of glue that holds us all together, me and everyone else, all beings.  That glue, whatever it is, is beginning to loosen in me, and I can feel that happen.  I guess when that glue is gone, we  die.  It’s connected to life force, to chi, to our “give a shit” quotient, to quote the author of Die Wise, Stephen Jenkinson.  From all that I can tell at the moment, there is a little more space in my system as a result.  Not a bad feeling, so far.

2. My niece gave birth recently.  Her water broke, and the birthing process began. Once that happens, there is no stopping that baby!  My sense today is that there may be a similar event that begins the dying process, after which there is no stopping it.  Not sure what that might be yet, but I could sense it today, a presence, an idea, a concept that rings true to me.  That did not happen, not this time.  But its coming.  I thought I might be able to live through this cancer, to live a long time.  Perhaps I will.  But at the moment, it feels pretty unlikely.

I spent an evening with Stephen Jenkinson a week or so ago, while he was in Portland.  Me and several hundred others, at the Clinton Street Theatre.  He talks about how we can love each other by putting language to dying, sharing that, bringing it into our culture as a natural part of life, learning how to do it, and loving each other by teaching how it is, how to do it.  Braiding it into our lives.

People who see me often say, O what a great attitude you have, or you look wonderful, you look strong, or you sound great.  What they are seeing or hearing is my effort.  What I glimpsed today is what is underneath.

I am trying to stay mindful and to share this holy and marvelous and scary and heartbreaking process as best I can.

 

 

 

 

 

 

 

Walking to the River

Just a quick update on my last post, A Tricky Place.  Towards the end, I wrote:

“Maybe what I can do is just take one small step a day towards the river of life. Maybe I’ll walk down, quite literally, to the river. And say hello. And see how strong I am now.”

So, Eric and I ventured out on Sunday, walking down to the Willamette River and back up the hill to Rose Villa.  I didn’t hang on to him, I used my walking stick.  And did it.  1.89 miles total, half of it uphill – first time since we sold our house and moved to our cottage, a year ago.IMG_3965

That is how strong I am now.  Yippee!