Monday, January 14, 2013

Sorrow and discovery

Those of you readers who don't know Althea personally may have been wondering why the posts have stopped. In the midst of the bustle and work and joy and planning of life, there is sorrow and loss. Sometimes it's expected, sometimes it is sudden- but it is never easy.

We lost Althea in September. And we feel that great loss, that hole in our world, every day.
And while we are saddened, she is free.

But she leaves us so much of herself in her writings. I found this poem while sorting through pages she wrote back in late '96 or '97, after her first encounter with the big C- but not her first encounter with Buddha. And I offer it up, as a prayer.

 Whats with me? Every puddle I come across, dripping down, a drain pipe,
floating organe pine needles in a  clear pool lined with smooth stones, sand, pebbles, mud--
Every puddle I want to bend down and drink from.
Face to earth. A kind of healing worship.
Then I hear a car swoosh by a street or two over and I remember where I am.
And I don't fall to my knees.
But there is something with me. Something with me and I long to bend down,
to bend down on this earth and touch my lips to something cool and moist,
and to leave my tears in it's place.

I do not know when I am going to die.
But this only makes me ordinary.
It's true for everyone.
We do not know when we might die. it might be anytime.
I watched summer rattle full bloom over the mountain,
as autumn began to turn tide I thought
take this now. It is so much.
Open your arms wide. Take this. It may never come again.
Walking every morning round the lake, round the path, round the trees turning,
the birds turning, the smells turning, the rich heady compote of fall. I thought
take this in.
You'll have to open wider if you hope ti fit this all in.
Don't blink or turn away- take it this rich rich gift.
This glorious gold you've heard so much about but do you see it do you taste it because
it's only here for now, for this brief moment- and you oh lucky one are here with it.
Taste it now, and put away your sorrows.
The world is a big place.
Open wide for this may never come again.
Be sure it won't.
Each season happens only once.
It is our fallacy that they repeat, our convince, our illusion.
This moment, it won't come again.  It is your gift.
Open wide.

I don't know how to tell you about winter- the beauty of things bare and cold.
Every twig it's own shape against the velvety mud. Carved against the low white sky.
Each thing precious.
The woodlands are like ancient jewelry each tiny thing supporting the beauty of another.
A kind of fillagree work, so vast so intricate.
Open wide.
The red berry hanging on that vine, the black bird that comes to eat it.
How could one hope for more?
 I am more conscious then i ever was of prayer--once more this makes me only ordinary.
And my most common prayer?
Open wide
dear god, open me wide.

                                                 -- Althea Hukari

Sunday, June 24, 2012

Love and Loss

Let's save the small talk ("Hey, where ya been?" etc) for another time, and jump right in:

Friday I said good bye to my loyal friend and beloved companion of 12 years, Tilly Jane.

I'd come to realize in confronting the reality of her decline and eventual demise, what it might be like to have the shoe on the other foot, as it were:  What it is like to love someone whom you are aware is likely to be taken from you before you wish to let go.  Steeling one's self against such a loss is a built-in human defensive mechanism.  And I have found myself in the last two years of Tilly life, pacing the same circles of protective auto-thought that I am sure my loved ones must perambulate with me.

We want answers:  Will our loved one be OK?  By which we mean, at least in part, please assure me that I do not have to guard against losing them-- at least not now.  We all know it must, it will come sometime, but the indefinite future is so much easier for our minds to deal with than the immediate future.  Like the New Yorker cartoon depicting scheduling an appointment over the phone: "How about never?  Does never work for you?"  This is essentially how our small mind deals with big issues.  They are happening NOW or they are happening NEVER.  And "sometime in the indefinite future" is close enough to never for us.

I recognized in my own quest for solid answers regarding my dog's health and longevity what it must be like for my loved ones to try to wrap their minds around my (and therefore, their) predictament.  We just want to put that niggling little question to rest:  Will my beloved (and therefore I) be OK?  Then we can breath again and go about our business.

But the problem is that even when we get the answer we seek ("All clear, for now"), it does not solve the question.  We know there will come a time when the answer, in one form or another, will be we must face losing our beloved.  And then we go bat-shit crazy.  As well we should.  We are stuck here on earth with only these fallible beings to love, and then we find out that someday each and every one of them will be taken away?  Have a nice life!

This search for answers to the "problem" of my dog's coming death sometimes actually interfered with my ability to simply BE WITH HER while she was alive.  I could stand back and try to "solve" her, or step up and just love her.  Just embrace our situation, transience and all.  Yes, we do not get to have one another forever here on earth-- but let's not let that diminish our remarkable capacity to love with everything we've got in the here and now.

After all, the Buddhist say the HERE and NOW is the only moment that is real, anyway.  The past is over, the future a dream.

But here's the deal:  Yesterday as I stood at the top of my stairs, not hearing Tilly's nails click on the floor below me, not seeing her sweet face peer up to check on my progress, not saying for the first time in 12 years, "Good morning, my sweetest girl-est" (yes, I spoke that way with her and I am not the least ashamed to tell you so), my loss hit me like the proverbial ton of bricks.  I sat down on that top stair and wept my proverbial heart out.

What is this?  I asked myself, what is this I am experiencing?  Loss.  Loss.  And what is loss?  It is the hole left behind. it is the pond that fills up, it is the pouring out of your love for the loved one when the container of their earthly form is gone.  It is love.

And then I thought:  This is okay.  I can do this.  I can just let myself love my girl ("my sweetness and light," as I called her) in this new way.   It is sad, but it is sweet.  It is a kind of holy thing, this love that continues past the beating of the loved ones heart.  These tears honor that love and it is right and good that I should let them pour out of me.  This is just love.  A different face of love.

And in a way it is my privilege to weep, to grieve, to mourn, to honor my Tilly Jane.  The remarkable, intimate, non-verbal form of love between humans and animals is no less precious than that between human beings.  And every relationship we have is in some ways completely unknowable to anyone outside of its tiny, intimate circle.  It will not come our way again in this lifetime.  Be grateful.  Be generous.  Be willing to love.  Someday it will all be lost, like the intricate mandalas of colored sand that Tibetan monks labor over for hours and hours and then sweep away in a moment.  But what else are we here for?  Maybe one of the few things we know is that we are here to love.

Monday, January 30, 2012

Delayed Missives from the Front

At the beginning of January, our heroine was scheduled for a CAT scan to determine whether or not The Powers That Be think she should switch the medication intended to inhibit her metastatic breast cancer.  Your humble scribe kept thinking she would coalesce this info into a more eloquent form, but, heck, let's just think of this as somewhat-aged dispatches from the front, shall we? 

Some of you will have read all this before.  You may skip to the bottom of the post. 

          DATELINE JAN 3, 2012
Tomorrow, Wed, at 9 am I go for another CAT scan.  Usually takes a couple of hours, mostly prep-- getting the needle in me, drinking the god awful contrast solution, then three minutes in the machine.  
Friday I am scheduled to go over results of the same with Dr L at Celilo, as part of my usual monthly visit-- which includes a blood draw and Zometa infusion and takes all bloody (no pun intended!) day... 

Tomorrow, I plan on checking again with BOTH the hospital (in HR where the scan takes place) AND with Celilo to confirm that he really will have some conclusive results that quickly...  I don't wanna get poked twice in one week for nothin! 

SO I will let you know if my Fri appointment ends up getting changed...Keep any spare fingers crossed!

          DATELINE JAN 6th, 2012
Everything A-OK!
They were able to use the IV site from Wed-- although it did cause me a bit of discomfort having that bit of plastic in my arm for two days-- still better than an extra poke.

Dr sez the CT Scan looks very good.  Basically no change (meaning no growth OR less then 1 cm of growth) from last scan.  So he now thinks I am doing "REMARKABLY WELL" on Arimedex and that we should soldier on with same routine. 

I will schedule another follow-up visit with Radiologist so I can see the latest scans myself, just cause, you know, I like to do to do that... 
And I remain, um, shall we say, less then fully re-assured by the latest in this good news/bad news/good news roller-coaster ride than I might have been even 6 months ago.  Don't get me wrong, I'll take the good news!  I just try to keep the whole big picture in mind.  I get another scan in 3 months.  So I guess we can say, Hooray for now!

Worse thing that happened today is I gave in to a Frito craving and now I feel a little yucky.   Going to nap.  Love to all y'all. 
My next Celilo infusion date is TOMORROW, JAN 31st-- which by some freak of calendar is four weeks from my last appointment, JAN 6th.  Go figure.
Re-reading the above myself I see I did NOT address what I think of as my biggest lesson/accomplishment from my tangle/tango with the medical establishment earlier this month.  Then I realized I had already written about it here on this blog, but it bears repeating, because the opportunity for the lesson itself keeps repeating, and because it is so damn true-- and because I continue to get better at it with practice!  Here it is:

I am getting better at respectfully standing my ground and asking for what I want from my medical team without working myself into a snit because they do not remember or already know what I know about my body, my situation,  and my preferences.  I am able to be a more competent member of my own team-- to be more responsible about how I participate and less panic-y and judgmental about how others participate.
I cannot emphasize how much easier this makes my life.  I have to hold my tongue and curb my impatience and refrain from judgement-- probably good practice for me anyway (If you think I can't hear you laughing out there, you are wrong!) -- but the rewards are so great and so immediate, that I think I am really starting to learn something here.  When I can engage in this way it causes less suffering all around-- to the clueless receptionist, the harried tech, the nurse who has been praying to Jesus all morning in anticipation of the hell of getting a needle in my arm-- and-- oh, yeah--  TO ME!

So.   Here's hoping the force of mindfulness is with me tomorrow.   Any stray kind thoughts sent to bolster this intention are appreciated.

Monday, December 26, 2011

Marvelous Error!

Last night, as I was sleeping,
I dreamt -- marvelous error! -
that I had a beehive
here inside my heart.
And the golden bees
were making white combs
and sweet honey
from my old failures.

Antonio Machado

Saturday, December 17, 2011

Holidaze Reminder

“Of one thing I am certain, the body is not the measure of healing – peace is the measure.”  ~ George Melton 

I love this quote.  It rings true, and I'd never seen it before.  So, I read the rest of the article and I liked it, too!  Here is an excerpt from Traditions of Healing Rituals, Wendy Stargr,

"Training one’s mind in gratitude is perhaps one’s most worthy pursuit and guaranteed to heal one’s holiday emptiness. In fact, there is no other single human emotional quality that has the power to completely reinvent how you perceive your life and open a door to contentment and abundance. Many of the oldest secret societies in the world have gratitude built into their foundational belief systems. It takes practice if you are not accustomed, but gratitude is how happiness feels when it is imbued with wonder.
The most meaningful gifts at this time of year can’t be bought or even given; they are the transformation that happens in us when we are open to receiving. As a chronic giver, this ability to receive is a fledgling chick just learning to fly in me, but I now understand that letting go of how I think things should be and listening deeply to what is right in front of me is almost always a gift that I would have entirely missed in the past. When we get stuck on how life’s offerings (and you can expand that to include people and stuff) don’t match our expectations, we literally turn away from the love and pleasure that is ours. I see it happen every day; we refuse to be loved when it doesn’t look the way we want it to. Celebrate life this holiday season by allowing and receiving life’s gifts in front of you. Practice releasing your thoughts and preconceived ideas when you open a gift and listen for what might be deeply hidden in the gift in front of you.
All of this healing might make you bold enough to attempt the deepest giving of all- Forgiving.   This is when we accept that we won’t get a better past and when we finally understand that the only one being harmed by the grudges we hold are ourselves. Forgiveness, in many ways, is the ultimate act of receiving. You finally free yourself from carrying around the baggage of emptiness filled with justifiable injury and disrespect that might never get proper acknowledgement. Forgiveness is a chance to see beyond what we have always known and create room to get a glimpse of a universe still unknown to us. In these moments, we can drop the stories that have defined our holiday memories for so long."

Tuesday, December 13, 2011

Of Platelets and Glad Tidings

I do NOT have to go in for another blood draw today! Yay!

Did I mention they took a second draw last week while I still had the infusion line in?  Well, they did.  It was the end of a long day and I left before the results came back.   Then Dr L and I played phone tag:  He left a message that he wanted to talk to me about my second blood draw, and that it was not an emergency.  In return, I left him a message giving him permission to leave a more thorough message on my voicemail.  That did not happen.

I called this morning, and he got back to me.  The second platelet count was much improved-- not perfect but closer to the low-normal range where I have been hanging out for sometime.  (Turns out platelets can do a little trick called "clumping"  where they hide out in clusters, which makes the count look lower then it is.)  

Initially, he advocated for going ahead with another blood draw today, just to see where things stand.  I told him that I was not sure if he knew that I tend to be an extremely difficult poke, that my arm was black and blue from last week's attempt, and that while I would certainly do it if he thought it was necessary, I would prefer to save myself and everyone else the trauma if it was not.   He was glad I brought it up and said in that case, we could let it go until my next visit to Celilo, the first week of January.

To my mind, the best news is this:  I am getting better at respectfully standing my ground and asking for what I want from my medical team without working myself into a snit because they do not remember or already know what I know about my body, my situation,  and my preferences.  I am able to be a more competent member of my own team, in a way-- to be more responsible about how I participate and less panic-y and judgmental about how others participate.

I suspect the flip-side of the coin of old-fashioned blind-trust in doctors is this:  the desire that one could or should be able to have such trust.  We invest them with such authority in part because we wish their expertise gave them the ability to give black and white answers to our urgent health questions.  Yeah, that would be nice, but that just ain't the way things really work.  That's not anybody's fault.  That is just how things are.

When we don't like something, we look around for some one to blame.  That's kinda how we humans  are built.  But we don't have to play out that scenario.  And if we look more deeply, we might be able to see that every one of us has to deal with things-as-they-are and not  things-as-we-wish-they-were.

Recognizing that feels kind of grown-up to me.  As we grow up we have to give up some of the magical thinking that someone else has all the answers and can swoop in and save us.  That can be hard to give up on--- especially when we are faced with large, complex, scary issues like life and death.  But the more we can do that-- give up the us-v.-them attitude-- the more we can base our understanding on reality itself-- rather then on the reality we wish we had.

All this talk of reality is making my head spin.  Think I'll take a break and put some lights on the Christmas tree.  Best wishes, everyone.

Tuesday, December 6, 2011

Another Day at the Ol' Cancer Center.

Today Lori came with me to hear what Dr L had to say about switching me from Arimidex to a new hormone drug... What is it they say about best laid plans?

Yesterday I noticed that my appointment card listed Dr L at 10:00 and then chemo.  I don't have chemo.  My infusion, Zometa, is not a chemotherapy drug.  I figured it was just a mistake--but it is the kind of mistake that could really freak some people out!

Plus, I need to arrive about an hour before my Dr appointment so the nursing staff can insert my IV and draw blood for labs.  If I show up at the time listed  as my "Dr appointment" on the card,  it can really mess up every one's schedule for the day. (I know, because it has happened.)

I point these things out the the receptionist when we arrive (a little after 9 am).   She asks to keep the card to show to the director, saying they hope to find a better solution for these kind of mix-ups between the front desk and the treatment areas.

I go on into the infusion room, set up my ipod, earbuds and laptop and do my best to zone out while the poking ensues.  It is a tough one this morning.  I have not found any sure fire way to make it easier.  Being hydrated helps, having a puff right before helps (but I don't want to do that if I plan on any medical discussions with the doc!), but nothing helps every time.  One just does the best one can before during and after the ordeal.   I can tell you it is not easy on anyone.

Lori joins me in the exam room and meets Dr L (aka Doogie Howser) who tells us that since I am tolerating the current med (Arimidex) so well,  and it has had such impressive results on my liver lesions, he now thinks we should stay the course --at least until we get the next set of scans (in January-- they happen about every 3 months) before we look at switching to the new med (Aromasin). 

Well, there's a surprise.  But OK.

Back out to the infusion room.  We must wait while they finish running my labs before they can give me the Zometa.  A couple of  staff people stop by to ask about my getting Reiki today.  (I had stopped at the downstairs information desk on my way in and requested a Reiki practitioner come up to the infusion room to treat me whenever one arrived.  I don't know if this new notoriety is because of that or from my phone calls to the Director and the Spiritual Care people after last month's Reiki fiasco.)

Lynn, the Director-- with whom I had a conversation last month about creating the possibility of quiet in the infusion room-- tells me they have ordered noise canceling head phones.  A good start.  Not one but TWO Reiki practitioners come by to work on me-- one before the infusion arrives, one after.   The Reiki people thank me for  raising a squawk.  It seems it was helpful.

Nina comes by at the end to say hello and we talk again about the work we imagine being part of together, exploring pyscho-spiritual-social approaches to healing-- methods that focus not so much on "cure" per se,  as on finding meaningfulness with whatever circumstances life throws our way, including illness and loss.  The current model of battle for victory over disease can prevent us from being present to the life we have right now.  I do not know that either Nina or myself are patient people by nature, but we are learning.  Slow, patient, steady.  It is a long slog, but it is good to have partners in this endeavor.

One step at a time, baby, one step at a time.

My blood work comes back showing my platelets are low.  My white and red blood count is fine.  Maybe this is some freaky occurrence?    The Dr wants me to get another blood draw next week just to keep an eye on things.  Maybe this is why I am especially bleed-y when they take out the IV today?  Maybe it explains my tiredness the last couple of days?  I do not know.  I need to do a little more research on this low platelet phenomenon.

But I do know that after a bowl of Tom Kah soup and a whirl around K-Mart and Home Depot (Need new curtain rod!) Lori and I both arrive back in Hood River, about seven and a half hours after we left, totally pooped.  One step at a time, people.

My (mostly) remodeled house is (mostly) painted (interiors, anyway)-- but there is plenty left to clean/recycle/toss/re-arrange /etc before my holiday company arrives, and I am just going to have to pace myself.  Do not hurry, do not tarry.  Tomorrow is another day.