Loss along the way

Many perks come my way as a person living with a terminal diagnosis, and one of the greatest is getting to know and love others who are also walking this path in their ways.  We laugh together, share resources and experience, talk about dying and what we know and don’t know, piss and moan together at times, and then laugh again at the insane joy of just being alive. Together.  So many things we don’t have to explain to each other, we just know. Because, contrary to what people insist on telling me, living with a terminal diagnosis is NOT THE SAME as knowing that we all are going to die.  It’s a different realm.  And one that I sincerely hope you all never have to enter.

When my best cancer buddy Marcia S died on Thursday, May 18th, I numbed out and am still mostly numb.   Her cancer voraciously ate her alive, and wasn’t gracious about it at all.  She lived in pain for too long.  Her grandson asked her if she was dying and she said yes.  He wanted to know when, and she didn’t know.  “Summer would be nice” he said, beaming in love, a little guy.  Somewhere in my own little brain, what’s left of it, I had thought she would recover somewhat and live through the year.  I thought we would have more time, another visit.  Marcia knew best what she needed.

At her memorial, people talked about her nobility, her courage, her gifts to all of us, her outrageous sense of humor and fun.  Marcia was an ordained minister, and a hospice chaplain.  She knew this territory from many perspectives. She taught me to have more fun.  So I will practice, in her honor.  What a gift!

Dear Marcia, please know that I love you dearly, even though we didn’t have much time together.  I will continue to stumble along, and meanwhile trust that you are finding your new way.  Maybe you found the Pure Lands!  I hope so.  I miss you sorely.

And if prayers help over there, beyond the beyond, I shall send them to you once my heart opens up and pours out again.

 

Coming Clean

Writing this particular post for months.  It’s a tough one, for me and probably for anyone brave enough or bored enough to read it, too.  It’s about meditation and confession and humility and becoming friends with ourselves and vulnerability, just for starters.    I’m willing to bet that there is a common thread, however, for those of us who are on borrowed time, and know that down to our bones.  Here goes.

Almost every cancer patient is given or finds a list of things we can do for ourselves as we make our way through cancer land.  Meditation is often not only on the list but if not at the top, nearly there, for pain control primarily and as a way to deal with anxiety and depression.  Buddhists teach meditation and mindfulness as a way to “make friends with ourselves” and to develop skillful means as a spiritual path.  Quakers know that when we are silent and listen deeply, we can hear the “still, small voice of God” within.  Sounds great, doesn’t it!  Yup.  It is.  Mostly.  Except when it isn’t. Great, that is.  It can be excruciatingly difficult, also.

This starts with a little story.  When I was working full time, providing therapy for others on multiple levels decades ago,  I used to take a silent retreat every 3 months, for at least one week, with a group of Zen Buddhists who were also Catholics.  We sat in complete silence for 8-9 hours a day, not making eye contact, not reading, not speaking, just sitting in meditation with walking meditation every half hour, all day for about 7 to 10 days, with mass in the morning and a zen talk every evening by our roshi who was also a priest.

One day, I was noticing my own mind – because what else was there to do, really?  No TV, just my own mind unrolling movies in front of my awareness, my witness.  I noticed that  day that I was impatient, irritable, judgmental and stubborn.  I could see this as I played out little movies of memory or thoughts, in my mind, and began to name what I saw.   Great.  Next half hour, I noticed I was scheming, anxious, smug and opinionated.  Yup.  The list got a little long, so I went upstairs to my room, and started writing these darling traits down so I could remember, in between our sitting sessions.  It went on that day: domineering, victimized, possessive, suspicious, snide!

Truly, I was horrified!  Shocked.  I’d run upstairs and add more to my growing list, hoping no one would ever know.  Next day, same shit:  self-righteous, angry, pushy, manipulative, aloof, greedy, evasive.  After more of this: insolent, bitter, arrogant, conniving, seductive, snotty… I started to laugh!  It just got so funny!  Maybe you had to “be there”, but it was hilarious!   Still makes me laugh.  Sort of.  Fussy, fearful, murderous impulses (way down, hidden from sight, but I saw it like a flutter of something scary in the dark forest) grandiose, snobbish, rash, self-absorbed… on and on.  To this day, I am still adding more charming aspects of my own being, my own history, when I catch them;  being prejudiced about one thing or another are especially hard to see, elusive.

Some might say, “Hey wait, Susan!  You are much more than all that, what about all your positive traits, too?!”  Wanting to somehow dilute these insights, perhaps, or to make me feel better about myself, to take away the sting.  Maybe this makes some uncomfortable.   I have a page of positive traits, too, not to worry.  But this part of the meditation process doesn’t exactly get a lot of press, as far as I can tell.  Wonder if the doctors really know what they are recommending.  Want to bet? Because this is what eventually happens if you actually meditate.  A lot.  Probably different lists…

But here’s the thing.  I have finally made friends with myself (Did I say sullen, severe, scattered, punitive?)  and in the doing of that, joined the human species, warts and all.   Does all this lower my blood pressure any?  Not so as anyone would notice.  I wonder about AA and their thing about “taking a fearless inventory”.  Perhaps this is what they are referring to.  Certainly this has aspects of the great sacrament in the Catholic church, confession.  If done with mercy and humility, there is wisdom there.

So, if this is such great medicine for cancer patients, how do I transform the internal horror of such a freaky show into something inspiring and useful?  In other words, why in the world would anyone want to become so vulnerable? Why fucking do this!!! (Using bad language, undisciplined, cutting, intolerant) (Rebellious)

That question, dear ones, is why it’s taken so long to write this post.  (lethargic, procrastinating, making excuses) (Judgmental) Here are some answers that have emerged in the past 3-4 months.

William Stafford has a great line in one of his poems:  “If you don’t know the kind of person I am, and I don’t know the kind of person you are, a pattern that others made may prevail in the world.”  Right now, we have others prevailing in the world who are basically insane, so it’s becoming more and more urgent that we not only know who others are, we also know who we are, at the deepest level.  I believe this to be so urgent, I’m willing to share this story.  It is from the very bottom that we are able to create and describe our own internal moral compass.  Handy when there are no maps. Or when our so-called leaders have no morals at all.  Or when our own teachers are no longer around or it just gets too hard to cobble stuff together anymore.  And there is death, lurking.  Time is running out for all sorts of things, not only for me and perhaps for you, but for the planet and all beings.  Developing the capacity for wisdom and compassion is needed.

Pope Francis has a new book out, titled “The Name of God is Mercy“.  Pope Francis is the real deal.  He has this to say:  “Justice on its own is not enough.   With mercy and forgiveness, God goes beyond justice, God subsumes it and exceeds it in a higher event in which we experience love, which is at the root of true justice.”  If we are longing for true justice (not vengeance) and if we cannot accept ourselves with mercy and forgiveness, how can we offer that to anyone else? Or even to conceive of what justice might be?  Or care?

For Francis, the teaching is that we must be involved, we must be moved, we must feel compassion.  “This kind of compassion is needed today to conquer the globalization of indifference. ”  And meditation is a great tool to develop that compassion.  Which leads to wisdom, and developing a moral compass that is trustworthy and sane, a profound equanimity.

I am just learning how to embody this.  Mostly I fuck up and stumble around.  But the thread is strong.  Kidney cancer is riveting and debilitating, but its also a great teacher, keeping me focused and aware.

After decades of meditation and other practices, and getting to know death pretty darn well, at times there is a moment, an opening, and I see through all of this, the whole thing, and see and feel the shimmering grace that’s always there, the supreme joy.

 

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

 

 

 

Medicine Buddha Improv

Sitting in meditation today with some folks from Rose Villa, I went around my sunstone mala saying to myself the Medicine Buddha mantra on each bead, slowly, still finding my way in the Tibetan language, tasting the lilt of it, the rhythm of it.

When, much to my surprise, I decided to say the mantra for not only myself, but for my niece who is struggling with her cancer again, and then with another bead, another person, sending the Medicine Buddha energy off to them through my heart chakra.

Then, totally to my surprise, I decided to say the mantra for all the beings I love who have died, sending the energy off to them each, one bead per person, one mantra per person, or in a few cases, per dog and cat.

In Die Wise, the book I’m reading by Stephen Jenkinson about  death in the Western Hemisphere, he spends some time talking about the care of our dead, how we don’t have to “lose” them (i.e., “I lost my friend last week…” ) but rather we can continue to care for them after death.  It’s complicated, I’ll post about that later.

So that idea has been percolating along in the back of my mind, and lo! Here comes a new practice, to say the Medicine Buddha mantra for each one of my dead.  My dead.  What a concept.  It brings me to my knees.  Quite literally.

And here’s the thing that caught my attention.  Instead of each mantra for each bead feeling the same internally for each person, each one felt completely different!  The pace was different, the inflection, my memory of the Mantra itself more or less fragile or intact, my ability to focus, my ability to collect and then send the energy through the membrane into the other realm.  And my sense of whether or not that energy was received.

No cannabis involved here, by the way.  I stopped taking the oil for a few days while Eric was out of town, unwilling to be alone and perhaps needed while under the influence, so to speak.

While I’ve never read or heard of such a practice, it seems very powerful to me.  I sincerely hope that I have not overstepped in some way. Perhaps Dr. Tenzin or Christiana will let me know. I am grateful to them both for introducing the mantra to me in their own kind ways.

The Medicine Buddha mantra entices me.  It simply brings me a sense of joy, a fullness in my heart, a sense of plugging in to an ancient thread of enormous healing power.  So these two threads just came together today: care for my dead, our dead, and this mantra.

If you want to learn it yourself, there are multiple versions online if you just google it.

May you be well.  May you be healed.