Evil woman, the Silence of the Lambs, The Blessing (James Wright), The Summer Day (Mary Oliver)

So I don't really want to write this, but because I started this blog to keep friends and family up to date on my condition without having to call or search for information, I need to spill.
I began to notice that I was having more trouble than others raising and keeping my arms over my head or held straight out from my body more than 6 months ago. Kind of made me crazy, as I thought it was all do to my bum R shoulder and deconditioning. Then I started to have discomfort in my neck, R shoulder and finally, I began to be able to trace my L 3rd cervical dermatome clearly--first with tingling, then with burning. Having the tip of your ear burning is an odd feeling, trust me. I went in for these L sided symptoms initially. Got set up for MRI on cervical spine and my usual every 6 months PET scan a few weeks early.

If you haven't had a MRI, especially an MRI on your head, you are really missing something. THere is nothing to be done to quiet those magnets that have to spin around fast and bang into each other, but the techs try. i got my head phones on and was strapped in and ready to go. The table moves into the machine, and the sounds rev up and begin to start their steady BANG BANG BANGING. Now this is all do-able, and I had been duly warned and given headphones, but I was not prepared for the loud music that began about half way through the scan. How would your already strained brain interpret this: The first song piped in at a significant pitch was "Evil Woman". Remember the refrain? "Eeeevil Wooooman BAM BAM BAM BAM BAM. Have I done something bad? Did I eat another cholesterol-rich hamburger? Have I not learned enough? Am I not doing enough good? WHAT? WHAT IS IT? Ok, my psyche is a bit overworked lately. Then I started to laugh. I mean really , what else is there to do? I was told to keep still. I am bad.

Ok, then there is that thing called interpretation. I am a master, truly a master, at ignoring the fact that once the scans are done, someone sometime will call you and want to talk about the results. I have had a billion scans. Only once has anyone ever told me something good; therefore you can understand my denial. In fact, I think it wouldn't be out of the scope of things to get in a car and Thelma my way to the deep south. But I don't; I try to be a good patient.
Oh, I forgot something. I have been noticing a small R cervical lymph node for a long time. As I changed therapies last time, we watched this hoping the treatment would affect it. Well, it didn't really and it got bigger and began to recruit friends. So, I was scheduled for a lymph node bx. I saw the lovely breast surgeon who has helped me when I was originally diagnosed now 17 years ago, who is calm, kind, and competent (that's a nice combo). He looked at the node and thought it could be biopsied under ultrasound by the radiologists, so I was sent around the corner to have this done (there is NOTHING like a comprehensive cancer center that puts all these services together and coordinates care very effectively). Now remember that my hubby is a radiologist, and there is no anonymity here, but usually that is not a bad thing. In walks a radiologist I know well (who, by the way was extremely professional and as the techs put it, wears iron undies), thought this could be done and proceeded to do it, all the while talking to me as another lovely person held my hand. I'm all for hand holding...even if I felt absolutely no pain at all. Amazing.

So we all knew the answer. Lymph node was just cancer cells, MRI had found a soft tissue mass adjacent to cervical vertebrae on the R side C5-7. that's when I began to recognize that my R sided symptoms made a bit more sense. Rest of the bones look about the same, maybe a little worsening in some, but no other soft tissue anything, and that is good.

The next step was a visit with the radiation oncologist with the oncologist (another shout out to the comprehensive breast cancer program that allows this to happen). these two were talking about fancy-dancy radiation therapies that could somehow avoid vertebral artery (that is a bit compressed) but get close to it to get rid of tumor, avoid esophagus and nerve roots, but snug up tight to the mass and ABLATE it. These computer simulations are so complicated, they take a few weeks to perfect....wow. In the meantime, it was time for Hannibal Lector to make an appearance. I went in last week to get a "cage" or was it a "mask" made. As you can imagine (if you really think about it), if you run a simulation for two weeks and have it all perfect in its complexity, you certainly don't want patient X squirming on the table. Nope, one must be strapped in and held down. Here comes Tony Hopkins with his fava beans on the desk and a fine chianti in one hand. "Time for the mask, Lissa, just lie down on this table and we are going to put this warm, wet plastic netting over your face and shoulders and PULL IT DOWN TIGHT AND STRETCH IT OVER YOUR FACE AND SCREW TO THE BACKBOARD WHILE IT HARDENS." Great. Kind of creepy, but the two techs were funny and very, very in tune with the weirdness of what they were doing. Even when I brought up the Silence of the Lambs reference, they laughed and slowed down and talked me through it. there are no eye or nose or mouth holes in the thing, but it is mesh. you can breath and see a little, but it is WEIRD. I must paint the thing or better yet, have my wonderful group of writer/artist friends do a number on it as soon as I can get my hands on it.
So now we wait. I will have 5 radiation treatments with my lovely mask, and then I will have a new chemotherapy regimen. I'm not happy about whole thing, but I have done it before. If things get worse, we change our therapy. if things get better, we hold the course. I have been doing this for 8 years, and I remember every day that I have lived and lived and lived with metastatic cancer as a chronic disease. I hope to do it for awhile longer. My perspective on most things from here is never boring, that's for sure. I know it sounds crazy, but I feel as if I were shaken awake 8 years ago; I see more clearly and appreciate much more. I stand around and gawk at plants and trees, the colors and bounty of the farmer's market knock my socks off, and I want to hug everyone I see...which can be a problem. With this heightened sensing, I find all kindnesses bestowed on me at the cancer center affect me deeply. Like that bloody woman who held my hand during the lymph node biopsy. I definitely want to hug her. Oh, and the nurse who checks me in all too often now who just comes out and hugs me. I want to jump into her lap and never leave. I want to make other vulnerable, sick people feel like this. IT MATTERS SO MUCH.

But, but, but it is not all roses, that's for sure. This is hard and sad too. My wonderful family and I are trying mightily to keep this tippy boat (which is our life together) upright during these very turbulent seas of new empty nesting and worsening of disease. We need each other wildly, but we often can't find each other as we strap in for another enormous wave. Truly, we are so lucky that both kids are loved and secure and happy in what they are doing. Should the worst happen to either of their iffy parents, they have all the tools to grieve appropriately and then move on. They are loving and good and brave and strong. They will be fine and I'm very proud of that. Let's stop there. It is a beautiful fall day,and I need to take a walk with my silly little rescue puppy Bella, and to appreciate the beauty around me,and to laugh out loud at Bella's need to swim without any need to fetch.

How about a little transformative poetry. I'm going back to two old faithfuls. See what you think.

The Blessing (James Wright)
Just off the highway in Rochester, Minnesota,
Twilight bounds softly forth on the grass.
And the eyes of those two indian ponies
Darken with kindness.
They have come gladly out of the willows
To welcome my friend and me.
We step over the barbed wire into the pasture
Where they have been grazing all day, alone.
They ripple tensely, they can hardly contain their happiness
That we have come.
They bow shyly as wet swans. They love each other.
There is no loneliness like theirs.
At home once more,
They begin munching the young tufts of Spring in the darkness.
I would like to hold the slenderer one in my arms,
For she has walked over to me,
And nuzzled my left hand.
She is black and white,
Her mane falls wildly on her forehead,
And the light breeze moves me to caress her long ear
That is delicate as the skin over a girl's wrist.
Suddenly I realize,
That if I stepped out of my body I would break
Into blossom.


The Summer Day (Mary Oliver)
Who made the world?
Who made the swan and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
The one who has flung herself out of the grass,
The one who is eating sugar out of my hand,
Who is moving her jaws back and forth, not up and down-
Who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
How to be idle and blessed, how to stroll through the fields,
which is what I've been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me what is it you plan to do
with your one wild and precious life?
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Fogelberg and fireflies

I awoke this morning with a refrain from a Dan Fogelberg song zinging around in my brain. First of all, I don't love Dan Fogelberg. At all. Yuck. Second of all, I was with two serious Dan fans last night, and they had to break out the iTunes and we had to hear snippets of all of those songs. They did teach me that this music was better appreciated when in an altered state, but if I ever wake to that high pitched, bleating voice singing, "love when you can, cry when you have to, be who you are, it's a part of the plan ..." again, I will have to hit something. But, it was a beautiful summer night last night, and I really wanted to talk a bit about this spectacular summer.

Truly , I can't remember a better summer. The weather was sunny, warm, and dry. The tomatoes took over the garden for the very first time, and i just harvested the motherload of all tomatoes:



I even made baba ganouj with our eggplants and dipped our beautiful red and green peppers into the yummy dip. Anyway, both kids were home,employed, and fun to be with.....WOW. And we took a week vacation together in Massachusetts, rediscovering my parents' old place in Duxbury, and it was a perfect week of weather, friends, beach, boats, fish, walks, etc, etc ,etc for all of us.



Finally, we said goodbye to our baby as she stepped over that threshold and became a college freshman at Lehigh University. As you can imagine, I've been thinking a lot about KT (our daughter, Katie). Ok, KT here goes. Readers, please bear with me for a few sentences. KT has some personality traits that have been present since the womb--humor, intelligence, stubbornness, etc. The one I want to talk about is her sense of humor.

She emerged into this world a huge, 10 pound + baby with a shock of black hair standing straight up--we laughed. You looked nothing like the baby that preceded you for awhile. We lived in a tiny house in Chapel Hill, NC for the first 4 years of your life, and you slept on the couch, as our older son slept in the crib still. I remember propping you up into the corner of the couch before you could sit well, and as I went about the morning, you would slowly tip over. Instead of crying, you would begin to laugh, as if the world looked even more entertaining from this new vantage point. This scene replayed itself over and over. It was, as my mother would say, killing. I laughed until I cried and had to change my pants. You laughed more when you saw me laughing.


You sat in my mother's lap and laughed. you sat on the visiting dog and laughed, you pulled your brother's hair and laughed.


We put the two of you in the bathtub, and your incredibly sweet, loving brother who never once was jealous of your hair, would hold you and splash you and the two of you would dissolve into fits of giggles. you always laughed at Will's batman outfit--or just at him, I'm still not sure. We did too:



This easy laughter developed into a sharp wit that got you out of many scrapes and head-butting-teenager behavior with your mother. And it made you such a pleasure to be with. Watching you get ready to leave us and get to your first meeting with your hall advisor (Griffon), was something I'll never forget. You had been so open with all your feelings with us--fear, excitement, sadness, all of it--yet you were funny and brave (with thanks to that big brother again). You embraced us, we shed a few tears, and you turned away with wet eyes that so clearly said, "I'm ready, I love you, I am secure, I can do this, I can't wait to do this, I'm so excited, here I go!" How to be sad about that?

FROM:




TO:




Make 'em laugh, KT, and wow them with all your remarkable gifts.

How about some poetry? I think I'll leave it at just this one. I think it is gorgeous.

Interval (By Jeffrey Harrison)

Sometimes, out of nowhere, it comes back,
that night when, driving home from the city,
having left the nearest streetlight miles behind us,

we lost our way on the back country roads
and found, when we slowed down to read a road sign,
a field alive with the blinking of fireflies,

and we got out and stood there in the darkness,
amazed at their numbers, their scattered sparks
igniting silently in a randomness

that somehow added up to a marvel
both earthly and celestial, the sky
brought down to earth, and brought to life,

a sublunar starscape whose shifting constellations
were a small gift of unexpected astonishment,
luminous signalings leading us away

from thoughts of where we were going
or coming from, the cares that often drive us
relentlessly onward and blind us

to such flickering intervals when moments
are released from their rigid sequence
and burn like airborne embers, floating free.

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