Procedures and Goodbyes

All,

So sorry for letting another week go by, but I’m just going to get the blog out when I do; so here goes.

As I am writing, I am watching my right hand because it is covered in the most beautiful color of brown and white.  I want to show it to the world!  My supposedly uncreative sister came up with the most creative idea so far.  While we were on the beach, she and I were talking about tattoos that we’ve always kind of wanted to do, and unfortunately I’ve waited too long. The oncologist said, “ no”.  So, we were trying to come up with alternatives, and she found a henna artist in Cleveland on line.  We had 11 crazy hens and two boys who all got henna on arms, legs, and shoulders.  We look fabulous!  Even the hubby, who ran away screaming when we started, got his own little tattoo at the end of the evening.  What a star.  And while we rubbed off the black henna goop after so many hours, the color has darkened over the last three days to a lovely brown color, as seen above and below:

This was a perfect night to say goodbye to Katie as she was getting ready to leave for college the next day.  In the morning, she was ready.  The  car was packed and she had decided to go to leave around 1pm.  As the time came closer and passed, we realized that she was a mess, and she wasn’t ready to drive away at all.  In fact, she started out, and with her incredible wisdom, turned around after about 20 minutes and came back really to be with her brother; thank goodness they have each other.  This time gave us dinner with her, some silly TV to laugh at together (try Parks and Recreation!), time to talk and then a good night sleep.  She was much more ready to make the trip the next day, and she has reported in that she is happy and excited about sorority life and the new academics coming.  I’m so proud of her I can barely stand it.

We still have a week with our son, and he is just now getting all the things he needs to get done before the rising senior (oh, how did it happen so fast??) goes back to Maine.  He has the added distinction of trying to figure out what he wants to do with himself after college, a thesis requirement, and a final lacrosse season that he wants so much to make great.  I’m so proud of him I can barely stand it. 

Now, we have to make sure that my status is clear to them all the time.  That is a requirement they have made for us that we can do.  No more protecting them from things.  I know we have done that over the years, just trying to make their lives more “normal”.  But now that must end.  They are smart and able, and they have worked this summer on how to go back to school and who needs to know what is happening.  But, oh dear, this is hard.  I have had them around in a way I haven’t ever before.  They have been so close to me, and so present and mindful of what is happening that I will really miss them.  But I know where they are, and we are going to be talking, skyping, texting, whatever, so that I still feel them close and they feel me.

Oh, I forgot to talk about my procedure.  I had an outpatient procedure after returning from the beah to put in PluerX catheters into both lungs so that the fluid can be drained out my chest wall when it accumulates.  Not a very pretty thing to have sticking out on either side of your chest wall, but a wonderful way not to have to go to the hospital when fluid accumulates.  We have been draining the tubes about every three days, and the amount fluid has been decreasing, but it is amazing how much fluid is in there!  I’m very thankful for the catheters, but more thankful for Chip and Brent who are mastering the technique of draining these things! 

The good news is that with the drainage, my oxygen level is normal and I can do an outing or make some art during the day.  Yippee!  I am tired, and the nasty steroids both help and hurt my ability to function, but I am holding my own right now, and I can’t say grateful loud enough.  I am so excited to see my art sisters soon, I can’t tell you.  I have also received so much poetry, that I am astonished every day by new words and new ways to look at the world.  Thank you all for all you do for me!!

How about some poetry?  Maybe about kids leaving and Labor Day coming and times of REST……

Labor Day (Joseph Millar)

Even the bosses are sleeping late

in the dusty light of September.

The parking lot’s empty and no one cares.

No one unloads a ladder, steps on the gas

or starts up the big machines in the shop,

sanding and grinding, cutting and binding.

No one lays a flat bead of flux over a metal seam

or lowers the steel forks from a tailgate.

Shadows gather inside the sleeve

of the empty thermos beside the sink,

the bells go still by the channel buoy,

the wind lies down in the west,

the tuna boats rest on their tie-up lines

turning a little, this way and that.

Varanasi (Mary Oliver)

Early in the morning we crossed the ghat,

where fires were still smoldering,

and gazed, with our Western minds, into the Ganges.

A woman was standing in the river up to her waist;

she was lifting handfuls of water and spilling it

over her body, slowly and many times,

as if until there came some moment

of inner satisfaction between her own life and the river’s.

Then she dipped a vessel she had brought with her

and carried it filled with water back across the ghat,

no doubt to refresh some shrine near where she lives,

for this is the holy city of Shiva, maker

of the world, and this is his river.

I can’t say much more, except that it all happened

in silence and peaceful simplicity, and something that felt

like that bliss of a certainty and a life lived

in accordance with that certainty.

I must remember this, I thought, as we fly back

to America.

Pray God I remember this.

Remember (Joy Harjo)

Remember the sky that you were born under, 

know each of the star's stories. 

Remember the moon, know who she is. I met her 

in a bar once in Iowa City. 

Remember the sun's birth at dawn, that is the 

strongest point of time. Remember sundown 

and the giving away to night. 

Remember your birth, how your mother struggled 

to give you form and breath. You are evidence of 

her life, and her mother's, and hers. 

Remember your father. He is your life also. 

Remember the earth whose skin you are: 

red earth, black earth, yellow earth, white earth 

brown earth, we are earth. 

Remember the plants, trees, animal life who all have their 

tribes, their families, their histories, too. Talk to them, 

listen to them. They are alive poems. 

Remember the wind. Remember her voice. She knows the 

origin of this universe. I heard her singing Kiowa war 

dance songs at the corner of Fourth and Central once. 

Remember that you are all people and that all people are you. 

Remember that you are this universe and that this universe is you. 

Remember that all is in motion, is growing, is you. 

Remember that language comes from this. 

Remember the dance that language is, that life is. 

Remember. 

Back from the Beach with Stars in my Hair

Dear Readers,

We are back from the wonderful beach, my sister and I, and we are both sad and happy to be home.  I just didn’t realize how tired I would be after a 10-day vacation with the family.  Their idea of doing nothing meant finding something to do every day that took all day long; then we had appropriately done nothing all day.  By the time the weekend came and relatives and friends with it, we were having dinners until midnight and watching the kids have the best time with each other.  Please don’t get me wrong, I had a wonderful time, I was just more tired than I knew.

So for the next 4 days, Brent set me up at the beach at 7:45am while she walked, and I wrote or just watched and listened and realized.  We both realized that I was yet again becoming somewhat short of breath after walking part way back to the house from the beach, and that oxygen really did help…..expletive here!  I think we were all hoping that three weeks after an admission for fluid in the pleura (the lining of the lung, not in the lung directly), we might get a longer reprieve from its recurrence.  But we’ll get back to this.

I want to tell a story about two things.  First, I have no double vision.  Let me repeat that.  I am not wearing any opaque lense or other device but my old glasses that have to be several prescriptions behind, and I HAVE NO DOUBLE VISION.  How about that, eh?  The brain is a miraculous thing!  I do have an appointment with the neuro-oncologist next week  .  We’ll see what he has to say.

Also, the first kid to go back to school is leaving next Tuesday…..where did the summer go?  How did this happen?  How do we help them go back to school under such unsure circumstances?  Luckily for all of us, we have each seen counselors/psychologists who are working together to really help us ask the right questions, talk to the right people at each school, make sure exit plans are in place, etc, etc, etc.  This has helped give everyone at least a semblance of a plan, and point people to go to. 

But we finally sat down with our remarkable kids and really asked them what they were afraid of, what they wanted to know, etc, etc, and it was the best talk we have ever had.  I don’t want to reveal to much of what was said, but if I never have another minute to talk to them, that would have been enough.  They feel totally surrounded by love and always have felt so, and they know they will be ok as they have each other.  We tried to give them some over-view of what might happen to me medically in the next 6 months to a year, but even the oncologist is at a loss as I am always a weird outlier (which I’ll take at this point).  The hospice nurse (wonderful) is meeting with the kids on Friday to go over what happens to a person as they are dying (breathing changes, hand, skin, how things won’t be scary, more sleeping, etc) things we doctors think everyone knows, right?  Of course they don’t!  Our children especially. 

I know how much Chip and I will miss them, and I think the feeling is mutual.  We have certainly opened the door to stay home  if returning is too hard, but I think they are both eager to try to get back to school and afraid they will miss something here.  We are working on a plan to reduce this last fear as much as we can—a short video every day, skyping every week at a particular time, whatever seems to work best.  And part of Brent’s sabbatical is to help me with this, so we may find ourselves wandering around Phily/Bethlehem and Lewiston to say, “Hello”.

We will have a “family meeting” every night until there are no kids left, as it is such a wonderful reminder of how much we share, how our values have morphed a little and passed down in such thoughtful ways, and how much we like each other.  We also talked about what we believe the universe to be.  Are we all spirits?  What about God?  This discussion really helped us believe that in some way, we will be there for each other, and we just need to listen and pay attention.  What those stars!  Again I have to say it: How lucky am I?  Really?

How about a little poetry:  how about some poetry with one of my favorite ingredients, stars.

Place and Proximity (Pattiann Rogers)

I'm surrounded by stars. They cover me completely like an invisible silk veil full of sequins. They touch me, one by one, everywhere-hands, shoulders, lips, ankle hollows, thigh reclusions.

Particular in their presence, like rain, they come also in streams, in storms. Careening, they define more precisely than wind. They enter, cheekbone, breastbone, spine, skull, moving out and in and out, through like threads, like weightless grains of beads in their orbits and rotations, their ritual passages.

They are the luminescence of blood and circuit the body. They are showers of fire filling the dark, myriad spaces of porous bone. What can be nearer to flesh than light?

And I swallow stars. I eat stars. I breathe stars. I survive on stars. They sound precisely, humming in my nose, in my throat, on my tongue. Stars, stars.

They are above me suspended, drifting, caught in the loom of the elm, similarly enmeshed in my hair. They are below me straight down in the deep. I am immersed in stars. I swim through stars, their swells and currents. I walk on stars. They are less, they are more, even than water even than earth.

They come with immediacy. They are as bound to me as history. No knife, no death can part us.

Winter Stars (Sara Teasdale)

I went out at night alone;

 The young blood flowing beyond the sea

Seemed to have drenched my spirit’s wings—

 I bore my sorrow heavily.

But when I lifted up my head

 From shadows shaken on the snow,

I saw Orion in the east

 Burn steadily as long ago.

From windows in my father’s house,

 Dreaming my dreams on winter nights,

I watched Orion as a girl

 Above another city’s lights.

Years go, dreams go, and youth goes too,

 The world’s heart breaks beneath its wars,

All things are changed, save in the east

 The faithful beauty of the stars.

Choose Something Like a Star (Robert Frost 1947)

O Star (the fairest one in sight),
We grant your loftiness the right
To some obscurity of cloud --
It will not do to say of night,
Since dark is what brings out your light.
Some mystery becomes the proud.
But to be wholly taciturn
In your reserve is not allowed.

Say something to us we can learn
By heart and when alone repeat.
Say something! And it says "I burn."
But say with what degree of heat.
Talk Fahrenheit, talk Centigrade.
Use language we can comprehend.
Tell us what elements you blend.

It gives us strangely little aid,
But does tell something in the end.
And steadfast as Keats' Eremite,
Not even stooping from its sphere,
It asks a little of us here.
It asks of us a certain height,
So when at times the mob is swayed
To carry praise or blame too far,
We may choose something like a star
To stay our minds on and be staid.


Cheers to all,
Lissa

A Different Experience on the Beach (Love-Milosz, Kindness-Shihab Nye)

I  have put off this blog too long—things keep happening!  I need to come clean on the thing that just happened yesterday before I can continue, though.  My family and I came up to the Mass coast a week ago for some rest and relaxation.  We had a wonderful time celebrating my daughter’s birthday with a dinner and overnight in Boston, the kids had a lesson and became pros on paddle-boards, we had good friends who we don’t see often invite us to dinner and the kids had a wonderful time hanging with these kids, both cousins and near-cousins, for several evenings, and then they all were ready to get back home and get the school planning together.  How did that happen, anyway?  Can it really be time for school?  Have we really spent enough time together?

Add that to the fact that I didn’t go home with them.  I cannot get my feet in the sand enough here, and my sister said she could come up and hang with me for a few more days before she drove me home and stayed with me so that Chip can go back to work part time.  Sounds like a perfect plan; the kids and hubby said it was ok.  They left all the oxygen stuff here just in case, and they know the hospice group from Boston has already been here and are coming back on Thursday. 

What they didn’t know, either hubby or sister, is that I so wanted a day alone so badly, without trying to do much but sit with my feet in the sand and read, that I fibbed and told them the sis was coming or the family wasn’t leaving when they were.  And of course, I was thoroughly unable to use my day alone because I felt so rotten about it.  So rotten, I had to eat left over hamburger for dinner and not venture out at all should I hurt myself.  At least I got the laundry started.  I am so sorry family; I did a stupid, dangerous thing.

Now this morning, I am awaiting Brent (hers is about a 4 hour drive, but I know she is on her way) while I write this.  But let me tell you about the week.  Sometimes, just sometimes I find it hard to reframe an experience again—what I mean is sometimes not being able to get up the stairs or open that can or stay up that late AGAIN can be incredibly frustrating, and I forget that I can just “be” instead of constantly trying to “do” things.  My family is often better at getting me to do this than am I, but it is hard for me to slow down sometimes, and the week was exhilarating and fun, but exhausting for me.  Again, the sis told me this would be a different experience than last year’s week, and she was so right.  When I remembered this, I could “be” , and enjoy watching kids do things on boards and enjoy the company we had, and stop worrying about what my crazy skin with very low platelets looks like in a bathing suit (WHO IS LOOKING AT ME, I ASK YOU, WHEN I HAVE THE TWO GODESS CHILDREN WITH ME?). That helped.

The other thing that helps all the time is this image I have.  Maybe this is sort of like the image of Jon Luc Picard from the Enterprise going after cancer cells during chemo in my mind years ago.  Hey, don’t knock it; it worked wonders for me!  Now I have had another vision.  When I get tired, and the whole reframing thing gets in my way, I see myself sitting in a prayer position, but I’ve dropped my tush onto my legs and I’m sitting back feeling defeated.  Next to me I think is Mary.  She is in full prayer position and she has on a turquoise robe with gold silk trim just like in a book of hymns I used to pour over as a kid.  This book showed her in this position and you could just barely see her perfect little feet underneath her.  I noticed that too because we all have the most awful feet…..but that is another story.

Anyway, there she is and I want to crawl into her lap and say this is all too hard, when I see just the slightest smirk on her face as she looks down. So I look down, and I see the edge of a purple high top peeking out from under that gorgeous silk robe, and we both start laughing and laughing.  And I realize what all these purple high tops from friends all over the country and all over my experiences are doing for me.  Thank you, thank you, thank you one and all.  I know I can sit back and see some purple when I need to.  I can also find my way forward to “being” and feeling loving  kindness, which is what I feel 99.9% of the time. I am also going to do Deepak and Oprah’s 21 day meditation that started yesterday I believe. 

How about some poetry (aided by a magnificent book sent by a dear friend I wish I had known better in college!):

Love (Czeslaw Milosz)

Love means to look at yourself

The way one looks at distant things

For you are only one thing among many.

And whoever sees that way heals his heart,

Without knowing it, from various ills—

A bird anda tree say to him: Friend.

Then he wants to use himself and things

So that they stand in the glow of ripeness.

It doesn’t matter whether he knows what he serves:

Who serves best doesn’t always understand.

Kindness (Naomi Shihab Nye)

Before you know what kindness really is

you must lose things,

feel the future dissolve in a moment

like salt I a weakened broth.

What you held in you hand,

what you counted and carefully saved,

all this must go so you know

how desolate the landscape can be

between the regions of kindness.

How you ride and ride

thinking the bus will never stop,

the passengers eating maize and chicken

will stare out the window forever.

Before you learn the tender gravity of kindness,

you must travel where the Indian in a white poncho

lies dead by the side of the road.

You must see how tis could be you,

how he too was someone

who journeyed through the night with plans

and the simple breath that kept him alive.

Before you know kindness as the deepest thing inside,

you must know sorrow as the other deepest thing.

You must wake up with sorrow.

You must speak to it till you voice

catches the thread of all sorrows

and you see the size of the cloth.

Then it is only kindness that makes any sense anymore,

only kindness that ties you shoes

and sends you out into the day to mail letters and

purchase bread,

only kindness that raises its head

from the crowd of the world to say

It is I you have been looking for,

And then goes with you everywhere

Like a shadow or a friend.