Confusion and a compass gone wild

Did you know that if lightening strikes a compass, it will reverse itself, pointing wildly.  But if its then shocked, placed on iron and struck, “the shock reorganizes the element of the magnet.  And again it points truly, knows itself.”

I’m reading a novel, Ahab’s Wife, by Sena Jeter Naslund, and that little jewel caught my eye.  And this: “Was it not possible instead for a human life to end in a sense of wholeness, of harmony with the universe? And how might a woman live such a life?”

Certainly that is a death, and a life,  to which I aspire.

However, in August, I heard some bad news regarding my cancer, and it threw me off course.  Or, to be more precise, I allowed it to throw me off course.  The news isn’t that awful, really.  One of the five nodules in my lungs had doubled in size, from a year ago.  The problem is that I have been convinced from the very beginning that the nodules in my lungs weren’t cancer at all, but basalt dust from a construction project I lived near for three years.  One grew.  Basalt dust doesn’t grow.  So, this news changes things.

I took a deep dive down into the blues for about two months, fucked up actually to the point of paralysis: not walking, not thinking, not doing… just watching the damn squirrels.  I did some vegetable gardening, that was good.  But I just let everything slide.

On some level I had begun to believe that I was going to survive this disease that I carry around with me.  And maybe I will.  But it looks like I may not.  In a way, I’m back to square one, just dealing with the sudden approach of mortality.  Just more experienced.

Then on September 22, just before a Ceremony of Remembrance began here at Rose Villa, I had a mini stroke and was massively confused for about 5 minutes.  So confused that I didn’t know I was confused: a new experience.

I called for help then, for home health to come, for a dear friend Greg Johanson to come and rescue me, for Eric, for neighbors here who know.  Lots of help poured in.

I think my inner compass had been struck by lightening in August when I accepted about the cancer now in my lung.  That threw me hard, into confusion and grief.  It took the mini stroke and the help I got afterwards, the shock of that, to reorganize internally and resonate with my inner knowing again.  Whew.  Took awhile.

These dark alleys can be scary.  I wasn’t sure I wanted to stick around much longer.  Now I am open to life and living and death and dying all at once.

Working on that harmony with the universe thing.

 

 

 

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Every Little Thing

Here in Terminal Diagnosis Land, things can get pretty weird, pretty quick.  A week or so ago, I was walking a mile or a little more, two days in a row, feeling mighty fine I must say.  Smug, even.  Hey, look at me!  Walking a mile, and I’m supposed to be dead!  Ha, ha, take that, death!

Then on July 7th, I felt my death again.  It’s as if the cells of my body began to separate, and whatever it is that lives inside began to evaporate, or evacuate, to seep out the tiny cellular spaces that were slowly opening up.  Since then, I’ve been weak, holding on to the walls as I move about the cottage, trying not to fall.  Eric watches with some degree of concern, as does Tara, our dog.  “Mom, what are you doing now!” her eyes say.  She follows me from room to room.

Today, I’m doing fine again.  Yesterday, I walked into the village for the Farmers Market here at Rose Villa, and I walked without my stick, holding a large basket of herbs to sell from my little garden.  So go figure.  I have no idea why I got so weak, and I have no idea why I am now “back to normal”, whatever that might be in this realm.

I like it better when I know why this shit happens to me.  When I don’t know, I have no control over it, and I hate that.  Do we really have control over anything, really?  Probably not, but I like that particular illusion.  Meanwhile, life goes on, and I’m still included.  For now, anyway.  If I haven’t given you my attention lately, please do not take it personally.  It’s just how things are.  Very little bandwidth.

One of the hardest things about having terminal cancer, for me anyway, is that when every little thing happens in my body now, I go first to the cancer.  Is it in my ovaries?  Is it in my lungs?  Is it in my pancreas?  Is it getting worse? What now?  Before, mostly I just went on about my business without thinking about things over much.  Not careless, mind you, but not doing the dire trip, either.  Now, dire just happens, I nod, and then practice joy.  When I am able to do so.  It can take awhile to recover my equanimity.  But I do the dire trip, I do.  Cancer sucks.

My next CT scan will be early in August, so I will be able to report from a scientific view then.  My sense?  I’m doing okay.

At the moment, we have an abundance of magnolia blossoms, and so, the scent of heaven is in our cottage and outside, too.  Divine.

 

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.

 

 

 

 

 

 

 

 

 

 

 

“Die Wise” Book Review

After reading the book Die Wise, by Stephen Jenkinson, I wrote a review for the professional journal for Hakomi therapists, called The Forum.  It’s an academic journal, so I am pleasantly surprised that they accepted my submission and published it.

Here it is.  If you wanted to read the book, maybe this will inspire you to do so, or give you enough that you can move on to whatever is next in your reading pile.

Book Review

 Jenkinson, Stephen. (2015). Die wise: A manifesto for sanity and soul.  Berkeley, California: North Atlantic Books. (382 pages).

Jenkinson, Stephen.  Griefwalker: a film about the redemptive power of deep love for life, when life glimpses its end. Produced by www.alivemind.net. DVD, 70 minutes.

Jenkinson, Stephen. How it all could be: A workbook for dying people and for those who love them. Published by www.orphanwisdom.com. 37 pages. (“Something that can be useful in the sorrowing heat of the moment, and in the time before and after”).

 

In early February of 2015, a doctor told me that I had Stage IV Kidney Cancer, and that I had about 2 months to 2 years to live. In my travels in this new-to-me realm of “imminent death,” I encountered Stephen Jenkinson and his book Die Wise. I devoured his eloquent language, his wisdom and experience that he shares so thoughtfully and carefully. His teachings fit seamlessly into the Hakomi Principles and deserve to be introduced in the Forum for others who may be approaching death, or those who have clients, family or friends who may be.

Jenkinson has a MA in theology from Harvard University and a MA in social work from the University of Toronto. He speaks around the world, is consultant to palliative care and hospice organizations, and is the founder of the Orphan Wisdom School in Canada.

For Jenkinson, high tech health care has become an undeclared war on dying itself. “If you can, you should” (p.23) is the mantra in our death phobic culture in North America especially, meaning you should do whatever you can to continue living, no matter what, no matter how much violence you do to the dying person, their body and their very soul. Dying wise goes against attempts to control and domesticate dying including palliative care. It is a way of redeeming our way of dying that is the right of everyone, a moral obligation, a political act, an act of Love, spiritual activism, and yes, immensely hard labor. Therein lies his manifesto.

Instead of a sedated, managed, defeated dying, (Cope, Hope, Dope) Jenkinson is talking about purposed, meaningful dying that roots us into our life in a way that nothing else can do. He doesn’t say not to use pain meds if they are needed, but to be mindful of each choice, each prayer, and what it accomplishes in a death phobic culture.

So, what would dying look like from a Hakomi perspective? We seek non-violence, organicity, a body-mind connection that is trustworthy, mindfulness in and of the process, and unity. That is precisely what Jenkinson is teaching once you read between the lines.  He also includes: village mindedness; caring for our ancestors and our dead, weaving them in our lives; breaking the trance of our death phobic culture; seeing dying as an angel, rather than an executioner, something you live, wrestle with, share and can teach to others.

Die Wise is not an easy book to read, especially for someone with a terminal diagnosis. He offers not even a thread of wiggle room. For example, people who are dying often ask for “more time.” He thoroughly demolishes that idea. If you get more time, you get more time to die, more death, “temporary citizenship in the Land of the Living.” (p. 133) He titles one chapter The Tyrant Hope. What he means is that if you are living focused on hope, you are living in the future, and are not present to your life that you actually still have. His alternative is to live hope free, which is a subversive move towards lucidity, a revolution of sorts.

He talks about Word Voodoo: if you say it, you can make it (death) happen, so no one talks to the dying person about their approaching death. No one will name it for fear they might make it happen. I’ve walked with some good friends during their dying time who carried this view. There was no way to be with them in any level of honesty and devotion. Jenkinson offers no place to hide.

Even the notion of “quality of life” as a deciding factor in dying is up for grabs with him. He believes that quality of life is a principle strategy in our culture’s project of dying–not dying. It enforces the addiction we have to competence, mastery and autonomy. It doesn’t serve the dying, who are anything but competent, and quite literally out of control. “If there were no palliative care, what would the arc of dying look like?” he asks. What if we respect the process itself, and listen deeply to what might be needed here? This is right up Hakomi alley.

Our culture says, according to this man who has worked in the “death trade” for decades, that we can die not dying. Dying, instead, in his view, must be allowed to change literally everything. As a person living this through right now, I have to say it really, really does change everything. Staying mindful to this cataclysmic shifting is challenging, and hard work. Jenkinson is a trustworthy guide.

The wisdom we seek can be found in suffering, from being broken-hearted, which for him is a skill. Wisdom comes from learning grief, and from practicing grief. Who asks us to be fulfilled in our dying, or to even thrive in our dying, or to be good at it? We need a faithful witness to our dying, not someone who will banish what is hard and demanding.

In Ron Kurtz’s language, we need someone with Loving Presence who can make being vulnerable and incompetent, safe; someone from whom we can receive comfort; someone who is not there to fix what cannot be fixed; someone who is aware that death goes beyond just humans, to trees, rivers, stones, even mountains. We need to proceed as if there is merit in knowing death well.

Jenkinson asks huge questions with a rare precision. He asks the question: When in human history did the death phobia begin? It’s not so in other cultures. How “natural” is it to be afraid of dying?

What if this insistence on dying being a trauma is the traumatizing thing about dying in our culture? High tech dying turns you into a victim. That’s not true for all cultures. In my opinion, high tech tends to do this to birth as well.

A large portion of Jenkinson’s book is about our dead: they are “a rumor, unclaimed and unknown.” Their bones are somewhere else. It is the orphan story of the Americas, which is a type of homelessness. The alchemy of belonging comes when we plant our dead and their bodies sustain that place. In our history we have slavery, people fleeing, flight as culture, no bone yard in common. People internalize “home” when they are homeless. That leads to a culture of autonomy, self-sufficiency, lonely multi-cultural cities. The outcome for the dead is, mostly, unknown. Even our Gods are homeless, not of a place. Even our foundational story, the Garden of Eden, speaks of the loss of home, the loss of eternity, of death. Indigenous cultures tend to have Gods who live on the same land that they do, embedded into the very earth.

When my mother was dying in our home, about two weeks out, she suddenly declared that she wanted to go home. No amount of saying that this was her home now, no amount of saying she was going home in her dying, appeased her. She had told me my entire life that she wanted to be cremated, and that’s what we had planned. But now she wanted to be buried, she wanted to go home, to Ohio I guess, where her family and her ancestors were buried.

Part of our fear of dying for Jenkinson is that the dying begin to understand that their very reality is pending. “They are on the Lost Nation highway, even as dying, not yet dead,” disappearing from the memory of those left behind. (p. 279) Amnesia is built into our care of our dead. They don’t need us anymore. They are mysteriously completed and self sufficient, above the fray. That is power, in a culture like ours. How will I be remembered, if at all, I wonder? Do I just disappear from life, from the human sphere into the realm of “the dead” that almost no one even thinks about?

Now that I am dying, I find myself turning to face those from whom I come, my ancestors, my own “dead,” trying to learn from them. We don’t treat our dead with any degree of hospitality, usually.

“Dying means to be wrecked on schedule.” (p. 300) Being sad is not being depressed, not something to fix. We need courage to stop trying not to die, and to relax into it. Dying can be achieved, not endured as we tend to see it. It can be learned. We can die wise. Dying is the time to untie the links of strength and competence that bind us to our bodies. Stopping eating is to “vote no” for keeping on. (p. 309) It turns the tide.

To die wise, we can “faithfully report on our ebbing days, the sway of it.” (p. 310) My husband will likely not have an escort when it’s his turn, a sorrow that brings me to my knees. Children need to know, too, to begin to get a feel for it.

“If you are attending a death, bring a soft focus, a slow gait in your thinking and your speech. Stay willing, be supple in your understanding, ask your eyes to stay open, wonder what is needed of you.” (p. 314) As Hakomi therapists, we have practice in working in the non-verbal realm, so this will help a great deal.

Dying people are busy trying to find their way out of their bodies and out of their lives, and there is scant language for this. (p. 315) I remember my Mom late one night describing being in a tunnel, about half way through. She had a new doctor “on the other side, who had done all the paperwork,” and now she wanted to know if she could turn around and come back. Exhausted, I told her that I didn’t know, but I would see her in the morning, or not, depending on her choice. We said good night and goodbye. And she was all sparkle in the morning; she did figure it out. She lived another few months after that. When my beloved companion David died, he was radiant and said that he could see the light all around.

“When dying is understood as justice, mercy, a sign of compassion that is stitched into the fabric of life itself, that can bring us into a world-loving, community-serving love of life.” (p.350) Then we can die wise.

“Grief isn’t an intrusion into the natural order of things. It is the natural order of things.” P. 367. It’s the ability of seeing the story of the thing, the whole story. We are grief impaired, grief illiterate. We learn instead how to manage it, resolve it, get over it. It’s not just the feeling of sorrow, or guilt. It is knowledge and understanding that each of us is obligated to live, for our life. “How you die grows kinship, a chance to practice unlikely gratitude, a way of loving,” and love is a way of grieving. (p.378) Jenkinson steps into the Unity principle easily and often. He is an unusual man, with language that delves deep into the heart of things, a poet, a storyteller, and a fearless angel of death.

 

The DVD Griefwalker is a lush, marvelous video of Jenkinson and his work, his language, his teaching. Again, there is no hiding place, no way to avoid death in this. He helps us take a long, deep drink into what it is and what it could be, how we got here, and what needs to change for it to be more organic.

His workbook, How It All Could Be brings a whole series of questions to the table. Here is his dedication:

This was made for all those who have come to me questioning, sorrowing, fighting and trying to lay low while their lives go as lives go, for the families and friends of those who didn’t live to see this done, for all those who asked for it. It was made with gratitude to the teachers and great rememberers out on the dangerous and darkening roads, where it all lives.

It’s a study guide to Die Wise, a shower of questions that incite deep reflections, conversations with shared ideas, delving deeper still into this concept, this manifesto of dying wise. He teaches that you wrestle the angel of death “by grief, by wonder, by courting uncertainty, by falling in love again with being alive, this time with the taste of its end strongly on your tongue.” It’s part study guide and part workbook, part meditation, and part kitchen table conversation. He wants us to work at this. It’s quite grand, and I recommend it to those who read his book.

As for me, I have only been using alternative medicine, and I am now, a little over a year later, a Stage III cancer patient. We don’t know what that means exactly, but I am learning to live hope free. I’m putting language to this journey in my blog www.SusanShawnAlive.wordpress.com. I keep my eyes open, and I’m learning how to die wise, as best I can.

 

 

 

 

 

 

 

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.

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.