ep13

Where to begin .. what day, what event?
I don't know .. I guess since it has taken me several days to just get this far, I'll start now.
It's 12:05 a.m. on December 5. But when I awakened, and looked at a machine beside my hospital bed, I saw 3:00, and thought it was morning. My first steps were with my constant companion, 'Stick' .. the IV drip pole that follows along with me everywhere, to relieve some of the gallons of fluids being pumped and poured into me to save my kidneys. I received my first radiation yesterday.. and my first chemo treatment last night.
Having always felt the tides, the pull of the moon, more keenly than anyone ever believes, I felt the the chemo (or it seemed I felt it) coursing from cell to cell. The first and strongest attention, the wholesale cell murder, was in my left facial area .. the area that called attention to this disease in the first place. But I felt it elsewhere as well. From the circles around my eyes, to the muscles in my neck and even, though only slightly, to the swellings of my ankles.
When it worked around my heart, and in my chest area .. it seemed as though a war were going on. I felt overwhelmed .. my blood pressure skyrocketed, I had to recline. I disconnected from the laptop and lay flat upon the bed, arms at my sides, afraid, unable, unwilling to move. And while I lay there, in deep fear, wondering if my heart were strong enough to withstand the strain of this cellular slaughter, a phone call came through from a friend who has, over the last several months, reintroduced me to the Word of God; who has, during the last several months, calmed my mounting fears and helped me laugh the blues away time and again. His call was a gift. He listened to me explain what I was feeling and helped me get through the trial of those first minutes of chemo. Once we disconnected I fell almost immediately asleep; he had pulled my attention from the war going on inside me and reminded me of the love others have given me to keep me stay whole during this event that is threatening to shatter my soul..
I thank you .. one and all .. for continuing to share your love .. to remind me I am loved; while I try very hard not to 'think too much' about what is happening to me, and what will happen to me; while I try very hard not to think about why this is happening; while I try very hard to remember to live, not one day at a time, but one minute at a time.

Back to ep 12

In the beginning.

DAY 2 in this Episode: 1:50 a.m. on December 6. Radiation and chemo both underway in their own specific time zones. Having difficulty maintaining reasonable blood pressure. Sleeping too darn much. The food tastes metallic, tainted with lubricants. I pick and choose, yes to mushroom soup, uncooked vegetables, saltines. No to everything else, entree, vegetable, dessert, even the milk tastes of chemical residue.
I am wakened in the night by frequents needs to urinate, and in spite of my diligence in drinking water and absorbing water through the IVs, one kidney plagues me with pain. Often, when I rise to relieve myself they give me more pills, check pressures, temp, heartbeat, breathing .. and I am always wet through, soaked in my own dreams, chilled in the night air and eager and ready to return to the comfort of the blankets, yet worried that sleeping too much is ... too much.
   I want to go home today.
   The e-mails and cards and flowers and plants and gifts come each day. Some filled with words of hope, others overflowing with regret. They mirror my own decisionmaking. Yesterday I wrote upon the tablet hanging in my room, "The heartbeat of survival draws its rhythm from the consistency of humanity's caring." Even though I love backgammon, I cannot play as I once did, cannot concentrate, cannot justify the expense of time.
   Although, thinking it through, as I so often do as I write, I instead fill my time with sleep. I guess the game yesterday with the young lad, the stranger, from Istambul, triggered a new question. He had asked me, after I'd beaten him mercilessly and he wanted to play another game, why I felt so sorry for myself. Unable to answer, unwilling, perhaps, to answer... he brought up the one question that will, if I don't rephrase it, and soon, kill me. I've said over and over again, in missive and memo and mind, "I am dying of cancer." A kind and caring lady has told me that if that is the way I insist upon phrasing it, in missive and memo and mind, that is indeed the way it will happen. Though the percentages of survival are low, I've beat equal and greater odds over the decades of my life. I just have to change my attitude, and maintain that change, and I can beat this one, too.
Anybody out there got any ideas on how I can convince my currently defeatist mind it's on the wrong track?

DAY 3 in this Episode: 11:25 a.m. on December 6. I've had the radiation for today and my head feels heavy and as if it were encased in plaster; as though moving it, to smile, to frown, to send a question, would be a herculean effort. They've finally disconnected me from the IV though, until the next chemo treatment this afternoon. It's a relief to be so free from restraint. The first bout of nausea hit me this morning, and even now threatens to erupt in new spasms of 'get this crap out of my system'. But, all-in-all, it's much milder than I anticipated. Whispered into my ear by a sweet and kindly med professional are the words 'it's sometimes better if there's a magnificent response.. means the chemo is working.' I take it with a grain of salt .. or sugar .. or sand, knowing that my body is so very different from any other body, knowing generalizations in this kind of endeavor very rarely apply.
I'm here now, waiting to meet my backgammon friend, the guy I've corresponded with more months, the gent who drops everything to drive from Indiana to take me home, the guy I've never met but whom I consider and trust enough to allow to take me home. My needs first, he keeps saying; and I believe him. And yet, his arrival engenders concern among the staff; they wonder how I can consider driving away with a complete stranger when my own body and head are so far from being under my own control. I laugh at this, too, thinking 'hey guys' less than a week ago I'd never met you, either, and look what I'm letting You do.
But as eager as I am to go home, I know that my blood pressure is a concern, I know that I don't feel up to the new stresses of familial demands, and everyone expecting that, since I look the same (so far), I also feel the same and am ready to sit around and laugh and listen to their headgames. So I might just stay. I'm tired now and will rest.

DAY 4 in this Episode: 6:30 a.m. on December 7. Pearl Harbor Day; my body bombards me with the stench of chemicals at each breath, each step, each turn of the head. I seem to move in a cloud of it. I wake feeling good, though, and step out of bed to be accosted by dry heaves, my stomach saying 'it may be fine for you, but chickee, we're not happy down here.'
But the kindnesses in the care I'm receiving here continues unabated, as well. I am impressed with the quality and consistency of the humanity I see here. In spite of being inundated on a daily basis by the depths of despair that cancer causes, this oncology unit always keeps the flowers in their faces, raining petals of concern with each of my complaints. They accept my need to know, and for that alone I would be grateful, but they also stand closer, taking my hand on occasion, telling me they know how hard this is, telling me they understand I'll make mistakes, misteps, miscalculations, but that it's ok. This isn't that exact a science, and each body is different. They seem to say, 'just pay attention to you.'
I want to go home today. To see again the view from my windows; to drink again the water from my tap. I know the stress will be greater there, I'll want to keep up appearances, keep 'em laughing, remove the worry lines from their faces by pretending everything is ok .. will be ok. Sucks being such a martyr. :-)

Friday, December 8 - No longer counting the days .. there will be way too many of them
'Home again, home again, jiggety jog' .. the nursery rhyme skips through my head, seeing outside my bedroom window the pear leaves still green and hanging in abundance within my view, framed by the hillsides of golden drying grass and the winter of the dark treeline.
I thought the water would be wonderful, but the chemicals still pervade me. But oh the food .. Rodd is a great cook and I've overloaded myself with his deep rich soup of culinary experience. Though my legs wobble and turning my head first thing in the a.m. is guaranteed to send me into retches of despair, I still look forward to seeing what's on the menu.
Woke in the night, unable to access mail or webpage, concerned at not being able to continue this sharing. Today, in the dawning, I discover that all works well on the laptop, but is not accessible on the tabletop. So here I am, writing to you of my thoughts, knowing I should be getting ready for the long drive to radiation, and not wanting to go there any more than I wanted to look at the rows of medicine bottles on my desk where once only ashtrays littered.
In hospital, I kept the laptop plugged in, not because I was using it as incessantly as before I became ill, but because it became a buffer. It's hard for me to keep finding words to make everyone feel better about how bad they feel. I never want anyone to feel bad about me, where I am, what I am, who I am; the guilt takes over and I tell myself, in the wee hours 'geez, folks, get a life; worrying about me is such a terrible waste of your time.' Then new words crop in 'thanks, but no thanks; I'm a great pity factory all by myself here; what are you trying to do? Take over my purpose in life?"
Some of the folk reading this will understand these words; others will shake their heads and just not get it; and others, perhaps, will see that pity, and regret, and sadness does not help me. I feel your love by the attention that you give me; I do not wish to feel your pain as well.
So buck up ... it'll make it easier for me to meet you in the ring of life.

Saturday, Dec. 9- 2 a.m. I waken, drenched in sweat, wondering if it is too many covers, or menopause, or this disease needing to remind me I'm not well. I pull up the laptop, cover myself as though I were a teepee frame in a winter snowstorm, and try to bring coherence to my thoughts. I cannot. Each tilt of the head sends my thoughts further into limbo. Shall I sleep? or worry about the blood pressure throbbing in my ankles? or about all the things I should do, but can't? or all the things I would like to do, but don't dare begin? Perhaps I should just sleep and wait for clearer thinking. Thank you to all who care and continue to peruse this tome.

Sunday, 3:08 a.m. Dec. 10- Another middle of the night foray into the thoughts of my brain. I've put this off for awhile, answering emails, playing bg, searching my head for the right words to say to such a wide audience.. knowing it doesn't matter really what I say .. that you care and that is all that I should concern myself with.
Care .. some of the poetry I've written over the years belies the importance of care, seeks, even, a state of care-lessness. But I think to survive this demon I need to get beyond that point and realize just how important it is for me to care, for others, for myself. As much as I've jampacked into my years of existence, my most difficult task seems to be settling on a single care to devote these remaining years to. I'm sure there are many causes who might benefit from my joining...
I hear the tears in my sons voices, see the love in their eyes for me.. me, who have for so long believed herself unloved. Perhaps I didn't know then, what I am learning now, that love has many definitions; and perhaps that could be a goal for me to strive for .. determining how many definitions there are .. at least in the short term .. determining how many interpretations impact my own life. I must try to remember, however, that the cycicism of my past has no purpose here in this new beginning. I'm sure it will crop up, now and then, but I hope, like so many other things, to work through and beyond this wall as well

Monday, Dec. 11, 4:46 a.m. - I've been up quite a while. Woke as usual, in the pits of despair, feeling like a tail on a box kite being snapped in the wind. And a friend was here online to calm me, buffer the gale, hold me steady while I woke. Friends are like that, I'm learning.
I decided that one thing I've been proudest of over the length of my life has been my strength; fortitude, if you will. So I slowly, methodically, bile always one shallow swallow away, added layer upon layer to my clothing, entered the outdoors and took shovel in hand to clear a path through the 5 new inches of fluffy snow the 60 or so yards to my workshop. It was the best therapy I could have chosen. The cure for this disease may kill me, but I will not dig my own demise with a shovel loaded in self-pity.

Wednesday, 2:28 a.m. Dec. 13- My thoughts become more chaotic with each passing day. It is hard for me to bring any coherency to the page. The skeletons in my closet and in the closets of those who love me dance brightly, ecstatic in the freedom to cavort; the freedom I have given them with my eternal questionings. As the decades have passed, I have questioned more and more quietly, asking only in my head, seeking answers only within myself. Perhaps it is the radiation that makes the words blurt from me, filled with profanity, why why why. Or perhaps it is the fear that all the years of questioning need answers before I can step onto the next map.. before I can finish this journey and begin another Or perhaps these skeletons are just tired of being in a closet, and the time has come for them to dance.
The disease has split me, like an axe through a half rotten log. There is a line of demarcation running down the center of my body. Half my tongue has sores.. half my face lags.. I list, one foot dragging behind the other. There is hurt, but only on one side.. ear, neck, shoulder. It is the tumor doing this, I suppose. And yet the people around me say there's no such change. Encourage me to laugh, to get a grip, to accept the fact that this time, I am not strong enough to get through alone.. accept the fact that it's ok to be weak, this time.. tell me again and again, it's ok, it's ok, it's ok to lean on them. So it's a game now. And I get points if I ask for help. :-)

Thursday, Dec. 14, 3:27 a.m. The days have shortened to fit only this disease and the comet tail that drags along with it; the residual fallout. Familial bonds, newly reforged, are bent to breaking with every new day. For each planned 15 minute radiation session I spend nearly four hours in transporting my body and its attached (bless them) attendants to and from the health care facility. Every day I am exhausted simply by the requirement to be sociable. Time I used to spend pacing from one end of my work parking lot to the other, or one end of my garden to the other, thinking through actions and reactions to each days' events, is gone. Now I must justify to the people who care about me each time I start a load of laundry, or climb up, or down, the stairs, open the refrigerator, or turn on the tap. ... 'let me do that. That's why we're here.' I do not feel anger toward them for taking away every breath of my autonomy. But I do, deeply, feel the loss, and weep for it. My despair reaches new heights, and I know it is the exhaustion of having to be 'taken care of' that drives the pinnacles of despair ever higher .. every day.
    Yet the medical facility encourages their attendance, seeing my weakness, afraid that I may do damage to myself if left alone. So I try to accept graciously, without rancor, these gifts of attendance, knowing that it requires ever-greater levels of patience, sucks ever-greater levels of strength from me than if I'd been left alone.
    Or, am I deluding myself? Refusing to admit I am unable to fight these symptoms alone, refusing to admit to myself that I Need to be 'attended to' for my own preservation. I know I am weak, from the chemo, from the whole-brain radiation. I must rest each time I climb a set of stairs, sleep for several hours after each radiation appointment. By the end of each day I have produced nothing, failed another day in justifying my existence, to myself.
And here I am, exhausting even the few moments of privacy I have .. worrying about being tired of worrying about being tired.
   My sons will all be home for Christmas. And for that I smile.

Friday, 4:14 a.m. Dec. 15: Returning to the steroid treatments begun in hospital has given me more energy, more nervous energy, I feel I could shovel the entire driveway with this new power. But it does not aide my intellectual endeavors. I play scrabble with my guests and lose miserably each game, unable to concentrate on vocabulary, on spelling; just find a word and play it then wander around the kitchen some more stuffing food into my face, making stupid jokes. I know this is part of why I stopped taking it when I returned home, though I blamed it on the nausea. But they tell me it reduces the swelling the radiation creates in my brain, and gives me the energy I need to put one foot ahead of the other. I feel like Alice in Wonderland, taking pills to make me tall or small; to fit the circumstances I find myself in. I wonder if the day will ever come when it will just be Deb: the lean, green, mean, fighting machine once again. I try not to consider that the last days of my life will be a continuation of this Deb the walking pharmacoepia, existing from pill to pill, never quite herself, yet never quite someone else either. Ah well. I guess one thing will never change; I'll never stop thinking too much.

Saturday, 3:44 a.m., Dec. 16: I've been up awhile, updating my mailing lists, trying to come up with the understanding I need to continue to take this disease seriously. The radiation treatments are a hassle, but not a pain. My lungs feel heavy and hurt some, but my pain threshold, with the exception of heartache, has always been high. So I spend my thought processes on trying to believe the dire news they've given me .. that my life can no longer be measured in decades, but must be measured in years, or months, or weeks.
It's been a lot easier to give things away; the accumulations of a lifetime no longer reign as definitions I need to see, to touch, to remind myself of my own existence. The thousands of books that line my shelves, the sculptures I've spent so many hours caressing with sandpaper and wax, I gift easily. A couple of months ago I could not have parted with them without regret. And now I am eager to let them go. Not so much because I think I'm going to die, as much as knowing that they are a part of the past and this disease has created for me a new future. It may be ethereal, or it may be just a new direction .. a new desire to see life through an updated pair of eyes. I predict that my focus will be more outward in the months to come; I want to travel more and add some scenery and some new personalities to my memories. I want to sit quietly and watch more sunsets. I want to condense my workdays, focus on the job to complete it more quickly, then run away to new places and explore new ideas, new people, new love and new perspective.
But meanwhile, I suppose I should concentrate on getting well(er). So many people have been so tremendously kind and I know I lack the graces to be sufficiently thankful, in my own eyes, anyway. Somehow thanking people who have put their own lives on hold to help me end mine deserve more than just a hug. Sister o' mine .. I love you. Auntie Louise, all my thanks. Know that when the Lord does decide to call me home, be that next month or next year, I'll put a word in for the both of you, especially you, sis .. you'll always be someone I'll respect and admire, even if I can't express it adequately in words.

Monday, 1:21 a.m. Dec. 18: Can't always be chipper. Know the fatalistic bent that permeates me comes through my writing more often than people care to hear, so somedays it's better just not to write at all. Wanting to make the people around me happy all my life have brought me to wrong decisions regarding the satisfaction of my own needs. Not quite sure how to correct it; just know it exists. My hair started falling out today. It's the one feature I've been the most vain about over the years, the thickness and luxury of my hair. Even with the grayness that's developed so strongly in just the last two years, it's still been thick. So having it come out by the handfulls today, even though expected, was still disconcerting. They tell me when it returns it may come back darker, less gray. I find it difficult to consider what it will be like coming back ..instead focusing on how to decorate a bare scalp for the holidays .. paint it like an ornament? spray on tinsel and gold flecks? I know any decoration I use will make other people smile, keep them from looking too closely at me on the inside .. keep them focused on what they want to see... smiling optimism. Perhaps they'll reflect that view back upon me and recharge my essence.

The Chronicle Begins Here: On Tuesday, November 28, 2000, I went to a physician for antibiotics to combat a case of bronchitis, and told him about waking the last couple of weeks with the left side of my face swollen (slightly) and numb. He ordered an MRI on my brain and brain stem for Wednesday afternoon.
On Thursday morning, November 30, 2000, he called and told me the MRI showed a 2 1/2 cm diameter tumor on my left cerebellum. The physician made an appointment for me with a neurologic surgeon for Thursday afternoon. At the meeting the surgeon ordered an x-ray and CT scan of my chest, called in a radiologist for an immediate reading, found disturbing pictures, and ordered a bronchoscopy for Friday morning to take a tissue sample of their discoveries on the xray and CT scan.
Friday afternoon they admitted me to hospital with Stage 4 lung cancer; the tumor in my head was just a break off particle from its origins in the lungs. Without treatment, they said I would live for 3 weeks. With treatment they said I could extend my life an additional 18 months. They have since become more cautious and have said that with treatment I could extend my life anywhere from 10 weeks to 18 months, with a 1%-2% chance of increasing those odds.
I start chemotherapy and radiation today, December 4, 2000, I hope. It's already been paused for my manic episodes, once, for which they've also prescribed anti-depressants (something I've refused for decades but which, during this new life episode, I accept as an assistant to ultimate survival.) Ludicrous thought, that ... eh?
I'm a bit concerned, however, on a couple of comments physicians have made regarding the effects of chemo .. they say I may lose the feeling in my fingertips .. and they say, in the longterm, my IQ may drop .. I'll just keep plugging away and let you be the judge of both. When I cannot write more, you will know.

This episode is a chronicle of my treatment for Stage 4 lung cancer with associated (they think) brain tumor.. small cell variety.. doubling in its growth every 30 days. This is where the words begin as I claw my way to the top of this disease. Five years previous to this revelation, my lungs were clean. They cannot say why the last five years have opened me to this invasion .. and really .. it doesn't matter. I only know that it Is a revelation and that my entire life will change as a result of what has occurred. But I can no longer allow it to take such a major role. So I will add here more sporadically. Read if you like; but peruse the other pages in this tome as well .. for the story will continue. As long as I do.

In the snowy air
the draw of the workshop
beckons me

Knife and the smell of woodsmoke
Gouge and the purr of cats
the feel of cedar and walnut taking shape within my fingertips

I cannot hear the phone here
or the cries of sad people
aching for me; wanting me to heal

The wood itself cries out instead:
Mold me, caress me with your fingers and shape me into God's love

And so I reconcile,
use the wood as healer
let it take away the hours when I would sit in front of the computer screen
and justify my inner turmoil

And I learn that the healing is cleaner
this way .. though perhaps its singularity is God's way of saying 'come closer to me, child .. and let me heal you through the wood ... it is, after all, not your mind that needs this healing .. this time.. is it your body.'
And I listen .. and I carve ..
and I feel stronger.

So forgive me as I break this diary for a time
and weld myself into the cold shadows of my workshop
Retracing the fevers of my mind and flinging them as woodchips flying across the dirt floor
Hurling them from me and into the fire that doesn't warm, much,
but smells so real with no hint of artifice or hidden agenda.
I will still answer e-mails
I will still come online daily to play backgammon
But I will take my wounds to the woodshed
and beat them into sculpture
to pay for my disease.

Friday, December 22, 1:35 am.: Felt pretty strong most of yesterday. Good company, cold brisk weather, closet cleaning seem to help clear some of the cobwebs in my head. The radiologist tells me that due to the risk of a unannounced siezure from the brain tumor I shouldn't drive for at least six months, and even that doesn't send me into a downward spiral. Just the mere thought, I suppose, of risking someone else's life to maintain some kind of status quo of my own makes the decision not to worry about it an easy one. And the illness .. this disease they tell me invades me.. has no problem accepting its pinnacle of attention. I eat, I sleep, take pills, get treatments, eat, sleep... Any new crisis that comes along I bury in sleep, knowing that the crisis will or will not pass without my attention; knowing that sleep is always the best healer and healing is top priority. I put off decisions, write letters to creditors saying wait, wait.. and sleep some more. It may not be what the people around me wish, to always find me sleeping, but it is what I'll do, it is the only thing I Can do, the only way I can think of to help myself heal.
How can I explain the gifts I've been given since this disease took over my decisionmaking? People I've known since childhood yet haven't spoken to in decades, strangers who've seen me once, and some who've seen me never and yet send prayers and warm thoughts and kindesses of food, and word and unbounded love. I've worked so very hard for years becoming a private person, shutting myself off from kith and kin, acquaintance and neighbor, and all the while they waited until I needed them and now pour into my life like warm, healing rain.Knowing how to thank them is so very hard .. wanting to include them in a huge warm lasting hug.. telling God 'Thank you for saving them for me, for bringing them to me now, when I need them so very badly.' And I feel even my thanks are horribly inadequate and so I sleep, thanking them in dreams, wishing I knew better how to say so they could understand how important their gifts of kindness are. Ahh .. I ramble. Hope you all have the most joyous of holidays, filled with inner peace and understanding of those around you who, though they love you, may be unable to express it in a way you can understand, and wishing, so very sincerely that I could hug each and every one of you who've made this December of mine one I do not rue, but thank God for, because it has brought me closer to the gift that you are.

Saturday, Dec. 23, 2:59 a.m.: I woke an hour or so ago, drenched in sweat and immediately became cold, and with no hair covering to retain heat. So I turn up the thermostat, selfishly, and bundle myself in blankets, wondering how long it will take tonight to get warm again. Wondering how I can induce a hormonal hotflash to speed the process. Tomorrow's our wedding anniversary; the day after, Christmas. My sons will be home, altogether. These should be exhiliarating times of joy and homecoming and the warmth of being together; and yet my head keeps focusing on Tuesday, fearing Tuesday, the next chemo session, the next bouts of nausea and lethargy and fear. So terribly afraid my body isn't strong enough. So terribly afraid the chemo, the drugs, the petroleum products they'll inject into me won't win the battle. I know it's not good, that I need to stay positive, that it is Only the positivity that will keep me alive .. but damn this stuff is bad. And I'm not convinced, I think, that they have the balance right. I still have it in my head that it's not as bad as they say and the cure can just as easily be the killer as the disease. Perhaps my meeting with the oncologists on Tuesday will help to convince me .. if they are strong enough .. if they state their case with enough conviction. Until then the hours drag by; I sleep as often as I can, trying to give my body what help I can to sustain me. And each session I wake less rested, nightmares coming more thickly. I know it is my head doing this, my fears. And I don't know how to stop them. So today I'll try to fill the hours more productively, try to make myself more tired, so that I can be rested enough for the holiday festivities, and perhaps not think anymore about Tuesday until Tuesday. I have become the center of the universe .. here inside my head .. with little strength to care or desire to care about politics, or meals, or futures. It can't be good. But I don't what else to do. I am caged by this disease and its treatment. I don't like this feeling and I don't know how to get out of it. Perhaps I shouldn't write in the predawn; but during the day I feel stupid. Words won't come. I putter and wander. Ahh well. Once this disease 'project' is conquered; I'm sure I'll have another excuse. Meanwhile I'll just work harder at concentrating on passing the minutes/hours; and let the rest fall where it may. I'm sorry to all those who look for me online and can't find me. I still play backgammon on occasion, but I don't feel like conversing anymore; don't know what to say I suppose. If I feel I can't keep up my side of the banter, I'd rather not talk at all. I feel your kindness though . and appreciate you for it. Please e-mail me if you can; the warmth of those words help me too.

Saturday, Dec. 23., 12:43 p.m. Spent the morning holiday shopping, cleaning, eating high energy bars and forcing myself to take one more step. The kitchen floor is half scrubbed, presents half wrapped, ideas half formed, but the two youngest are coming home today and I am exhiliarated, excited to see them and hug them to me. I try not to think beyond their coming home. Force myself to eat without hunger, drink without thirst, work without energy. It will make me cranky, no doubt, with I'll be a crank with a smile. The birds will be fed this year, as the snow piles ever deeper around this house in the woods. I have seed and berries and will make them popcorn and orange peel snacks. The cats, too, will feast, I'm sure and I'll save the tailfeathers scattered around to use in upcoming sculptures.
For years I've complained to God about thinking too much .. wishing to be more stupid, less deep. I'm beginning to think He may be granting that wish. I often cannot finish a game of backgammon without frustration, even solitaire and pyramids become difficult at times. For a brief moment I regret the requests I've made for blondness .. then remember they are like the head games I've encountered on the world wide web, not really worthy of the pain and heartache I created for myself trying to understand other's motives, others reasons for their, to my twisted mind, shallow attempts at understanding, at communicating, at caring. Perhaps God is telling me it doesn't matter. What matters is my own satisfaction, my own peace and acceptance of my own self.
I remember when the boys were little, I hadn't the time, or energy to think much about motivation and purpose. I baked bread twice a week, doughnuts once a week, made all their clothes, fed livestock of every variety, hauled wood to heat with, wash with, cook with, hauled water for the very same reasons. I miss those days filled with hard work and no time for thought. Perhaps God will heal me and return that gift of simplicity into my life. I hope so.
DEC. 24, 1:46 a.m. My two youngest arrived last night, filled with high energy and big smiles and bigger hugs. They lend me their strength with their optimism and excitement. The laughter rings through me even now, the time of night when I'm usually at my lowest ebb. I'm excited about their excitement; can't wait to start making pies this morning, and watch them wrestle and play. They're going to work on some cover for the woodland creatures; build something close to the house that I can feel them and watch them throughout the months to come. The wild turkeys outside the back door yesterday were struggling so with the deep snow; it will be pleasure to gift them some protectionn for all the gifts they have given me through the years. Tonight we will be five again, in joy and holiday spirit. I pray for the safety and generosity and kindess and warmth of all .. everywhere .. wishing I could send out rays of warmth and hugs to the universe for giving me the opportunity to have this time with my family. God is indeed ... good.
DEC 25, 5:51 a.m. Happy Christmas morning my extended family. The boys will sleep for hours more .. all four of them; and I await the dawn with more eagerness than they; wanting to wake them and feel their smiles. But I'll have patience. Kisses and hugs to all of you and God's Blessings.

DEC. 27., 1:17 a.m. This is a hard set of words to put onto the paper; but I feel they must be mentioned. The stresses of a holiday family gathering are pretty common. Every family goes through it, I know. The diversity we celebrate all year long getting thrown together into a melting pot that forces us to temper our differences and just 'get along.' And so we do .. while we're together .. and the next time a holiday comes around we look for excuses not to attend; digging the rifts a little deeper.. packing the walls of our ideologies a little harder to keep us from letting down our guard and looking at someone else's human experience. Until, eventually, we live in igloos of our own making, communing only with folk who agree with us or match our points of view. And what a great loss that is! I've come to appreciate, even revere, the extremely wide range of human experiences whose hearts beat in kindness and goodness and who I would never have considered, before this illness, that I had anything at all in common with, anything at all I would have to say to them should I see them on the street. My sons, my spouse, too, are strongly diverse .. and this holiday, and this illness, has been very hard for them. And hard for me to see and help them come together when the circumstances they are under would/could drive them into igloos of their making. I fight hard to keep us a family. Today I go back into the hospital for the next long session of chemo, after a short 'juice' yesterday. The x-ray of my chest shows the cancer is dissipating some, but my cells count and blood pressure are a concern. With good luck and rest, I'll be back out tomorrow after the 3rd dose and able to work more at opening the eyes of my boys .. all four .. at what they have in common .. at why I want them to be a family, as much as I want them to be individuals. But most importantly.. I want to teach them, as I have since their inception, that tolerance is the only way they can every really accept themselves for who they are. Tolerance of others, related or not. And beyond tolerance, I want them to accept the validity, with grace, of every cellular creature, intelligent or not, wealthy or not, graceful or not, healthy or not.. and try to find within their hearts the character to say with a smile ... 'please to meet you.' And mean it.
FRI., DEC. 29, 4:41 a.m. I peer through eyes/body swollen with steroids. face ballooned like a cartoon, kneeds taut and painful. I know the steroids are supposed to reduce the swelling on my brain during the radiation treatments but I keep wanting to cut them back because of the way they make me feel: engorged and lethargic. And so the mask I wear to pinpoint the accuracy of the radiation gets tighter every day, making it difficult to breathe there on the table. There are only a few of the radiation treatments left, at this juncture. The 2nd chemo session is swirling around in my bloodstream now, running amok in its killing spree, sucking all the strength I/my cells would like/could use, during this time of family reunion and holiday activity. But I have decided that I cannot give in to the sadness of regret for lost energy. So very many people have lent me their strength through word and prayer and deed. It has been my failing, for many long years to push those strengths away, to use up my own strength instead of accepting their gracious gifts. The other night.. the night I did not write here.. I had a dream. In my woodshed, my place of solace where I carve and sandpaper and work the wood, a small kitten appeared on one of the shelves where I perch the pieces that are finished .. or in process. A small yellow kitten, not quite newly born for she was perky with tail high and ears sharp attuned. I knew in my dream that she is a miracle babe, the daughter of my own neutered female. I knew she was a gift .. a mirror of this my self and my acknowledgement of my frailty during the time of this disease. And so I take her as my talisman .. in my heart .. to become the symbol of myself. This kitten is me. And I must nurture her now to keep her alive during this cold winter of my cancer. All other external needs will have to wait until this kitten is stronger before I can address their requirements. It will seem selfish of me, perhaps, and most likely I'll be the main one that feels selfish (guilt as usual?) but I've decided the kitten should survive as long as God will allow it. I pray that he will allow it to become a graceful, strong, independent cat .. full of fun. Meanwhile I'll take what comes one piece of catnip at a time. Cheers, my friends; for the upcoming New Year. Kiss someone under the mistletoe for me.
SAT., DEC. 30, 3:16 a.m. - I wake with seasickness from my own movement in the bed; drenched in sweat. I know I must get up and change clothes and sheets again or I will never get warm. And I do, but the chill has settled in like steel bands around my breasts and neck and head .. frozen bands that I think will not let any warmth in. I wrap myself in blankets head to toe as I type now, shivering alone here, thinking I should turn up the heat but knowing it is just me, not the household that wants warmth. My eyes continue to weep, the brightness of just about anything too much for them. Is it the radiation that makes them so sensitive to the light? Even the computer screen is too much .. they weep almost continuously now. And when I sleep they matt shut until I sometimes have to pick the debris from them to see through them at all. Perhaps this is why going online keeps getting harder. With eyes matted shut or weeping, it's more difficult to concentrate on thinking about anything else. That.. and not knowing quite what to say anymore. Each day follows another with one symptom or the other. No new challenges, just old ones more deeply entrenched. Holding at bay thoughts of a future until there is better news to couch a future upon. Ah well. I'll not go there this morning .. instead will stroke the kitten inside my head and say 'there, there, go back upon your bed of clean sheets and sleep some more, perhaps there'll be catnip in the morning. zzz
DEC. 31, 2000 - 1:56 a.m. Is it really the last day of this year? I wake with both eyes matted shut .. it takes nearly 20 minutes to get the right one open and it maintains a film that I think will never end. I don't know whether to use cold or heat to reduce the swelling but even the softest washcloth feels like dry hay scratching against my radiation-burned eyelids. When I first wake I feel like spun sugar .. no substance. I cannot feel myself; just an ethereal 'thereness'. Because I cannot see I lie quietly, wondering if the end will feel like this, when the end comes. I know it's not close, that much I can tell because I wake hungry, stomach growling for something, knowing whatever I stuff in will taste terrible and only fill the void, not the ache.
The boys are back into their life routines, the oldest back in Colorado, the 2nd in Madison preparing for a night of revelry, perhaps, the youngest here but deep into his dreams and fantasies and realities .. he shares via e-mail and I love it when he does. I finally decided to send a snail-mail to my employer forfeiting my position. It was a good job, I enjoyed it, it challenged me, it fulfilled me in many ways, but that, too, must have an ending because of mycurrent immobility. Things already are a-changing, in spite of my desire to focus only on the kitten within. Tomorrow begins a New Year ... laughing ruefullly ... I first wrote a 'whole' New Year .. and then erased my thought, not knowing, not wanting to press my luck by telling God what the outcome will be.
When I go to the backgammon rooms now I imagine others watch my website .. I put the URL on my profile and sometimes folk'll bob onto my table as though to bow hello, back out, then just stay in the room not playing .. I'm hoping they're instead reading and sending me vibes of commisseration and love as they check the newest installment. I don't play as much anymore, and for over a year have made it a point not to make new acquaintances (only one, in fact). Makes me wonder what inner direction has sent me to do these things I've done in the last couple of years .. all the life changes I've made .. all the directions I've turned to, and from. Is this the Lord leading me into His direction? or just a new direction? I guess I'll just have to concentrate on the kitten within and let Him tell me that .. if and when He will. Meanwhile, I'll feed my needs... feel my needs to feed my needs, and take one hour at a time.

Episode 14