ep16

August 14, 2001 It's been a busy couple of weeks. Met with the funeral home, the local pastor, the hospice social worker. Donated my office supplies to the local school, finished another quilt top and upgraded my pain medication.
   All my sons will be here on Thursday. I'm looking forward to holding them in my arms again and having a sit-down family meal.
August 16, 2001 We picniced in the grotto tonight: roasted sweet corn and grilled natural casing weiners. We were a whole family again and we laughed and laughed and laughed. Though I tried to talk to the boys about my immenent demise after the evening meal, they weren't ready yet to talk back. I understand, and will give them all the space they need. I know they'll accept eventually, though not without pain and perhaps even some anger at me for dying. I wish I could allay their pain, their fears, their anger. But they will be made stronger by this experience.     Not happier... but stronger. And they know that I'll be there, in spirit if not in body, any time they're ready to talk. I love them all so very much.
August 20, 2001 Any of you notice the incorrect dates previously stated herein? It's pretty stunning to realize that even with a calendar in front of me I don't know what day it is. It all boils down to when it'll be time for pain meds again. I'm surprised at how awful it's becoming. Breathing is truly a chore I'm beginning to hate.
I only have two quilt tops completed. The 3rd is cut out and I try to sew a few blocks together each day; the 4th I've barely begun to cut out. And yet it's difficult to focus on a single project for more than a few minutes. I play backgammon and literati online and a game my son brought for me offline - I read some - I sleep. The days go by more quickly when I'm able to sleep, but that's not always an option.
   I am not whining (or at least I'm trying not to) - I just feel the need to explain why it's so difficult for me to answer e-mails, entertain visitors, return phone calls. Everyone asks 'how are you?' Shall I say, oh heck, I'm fine.' Though that's what many seem to want to hear, I've gotten gruesomely honest: "I have terminal cancer and I hurt like hell." I don't relish jabbing at people with these abrupt replies, but I guess I'm past the point where I can tell even little white lies to soothe other people's fear of death. Get a grip, lads and lassies, everybody dies, nobody has a choice when, where or how, either accept it or piss off. The nicest thing anyone has said to me in the last few weeks is "I hope you have more good days than bad."
    Perhaps I'll feel more like being gracious another time. (And yes, I don't like it any more than you do; except for the thoughts of renewing family ties and perhaps being able to fly.)
Editor's Note: Not all emotions at the end of life are based upon acceptance.
August 21, 2001 I'm getting pretty pathetic. Sobbing in my dreams those tears I cannot bring myself to shed during the waking hours. I wake up from an afternoon nap with the residue of the dream soaking into my pillow and running down my face... sobs still racking my chest and delivering much more pain than comfort.
On Monday the Hospice people came by and signed me in. I accepted the concept of no further treatment: no radiation, no chemo, no CPR, no lifesaving techniques .... just pain reduction, emotional support and physical assistance when requested. The Power of Attorney for Health Care is signed and distributed, giving my final treatment instructions (or lack thereof) to the people who'll be there. On Tuesday next I'll sign a Power of Attorney for Finances, allowing my spouse the freedom of making financial decisions without considering me.
   I've accepted the notion that additional treatments to cure this disease is wasted effort. The problem is that once you've signed these end-of-life legal requirements, it sort of kicks out any wishes one might harbor deep inside of a hope for survival and all efforts at normal living seem ridiculous. What's the point, after all, of caring for anything?
   But I'm a tough old bird, usually.. and will try to hide these emotions from the people with whom I come face-to-face. I've discovered that reality isn't a flavor very many people are able to stomach these days.
August 23, 2001 I'm running out of patience with my "lacks thereof" and am spending most of my time sleeping. I realize it's escapism as much as anything, but at the same time my body says Relax; what's the hurry? Did you have something that you really Had to get done? And I realize the answer is no. The things I think would be nice to accomplish won't be missed if they're not completed. Organizing, more thoroughly, what I already have more organized than most folks I know, seems like make-work..
Another thing that's changed, either through the new meds, the increased snoretime, or the end-of-life reality checks, is the big increase in the quantity and depth of my dreams. Not only do they seem to extend from dusk til dawn, but I remember them almost as if I'd vacationed in them in realtime before seeing them anew with my eyes closed.
The humanity of the community that surrounds me sends me their love and prayers everyday. Though I am unable to take myself out into society and would be unwilling, I think, if I could.. these people have sent me cards, prayers, warm hugs ... I know I don't thank them often enough, respond quickly enough, but I'm hoping they realize that they are my worldly angels, the ones that fan and thereby cool with their wings, the heat of my fears.   Thank you
August 26, 2001 The best of my intentions are ruled these days by my body-mind. For the first time in - literally - decades, I intended to visit the local religious santuary this Sunday morning. Hub was moving our youngest back into the dorm, so I was on my own. But as often occurs these days, I became ill in the night and tried to make up for the lost sleep time by laying back down directly after having a glass of milk and the morning meds. I woke with only 15 minutes to shower, dress and drive myself into town.
   In years past ,15 minutes would have been enough to shower, dress, and drive me and all three sons to this or that local event. Now I accept the fact that 15 minutes is rarely adequate to cover any of those events individually, let alone collectively.
   so ... My current physiology (is that the right term?) determines the accuracy of my intentions. When they get in synch I'll let you know. Meanwhile.... may the Good Lord forgive me my sloth.
August 29, 2001 The Hospice folk are a pleasure. Eyes wide open and always an honest smile, they take the pain from my body with ready medical choices and stop the bleeding of my heart with practical advice and reality checks softly cushioned in compassion. I've learned so much about end-of-life and the way many, young and old, have handled it. These wonderful people become a steady hand when mine shakes, a steady head when my tears tremble and threaten to fall. Acceptance gets easier each day they come by. I can laugh again, and face my nightmares head on.
   I continue with my final arrangements; preparation of the Power of Attorney for Finances is the most recent bit I've met head on. Though we're in a bit of a bind right now with the everpiling medical bills, it's a pleasure to know that once I'm mentally incapable, and/or gone to the rosefields in the sky, hub will be able to use my life insurance and any nickels or dimes he finds under the bed without having to go through a court of law to get custody of it.
   My sleep time continues to increase. Long naps morning and afternoon, and quite often sleeping most of the hours of the night as well.
   Three of the quilt tops are completed and I'm putting the word out I'll welcome any help tying the quilts together as soon as the frame can be cleaned up, refurbished and brought inside.
   My father built the quilting frame for my mother when I was a child - two boards 1" x 3" by 8' and two 1' x 3" x 12' long. He manually drilled holes every inch or so for flexibility in working different sized quilts and handtacked a strip of doubled cloth the entire length of each of the 4 boards, to tie the quilt backing to and keep it taut. Lag bolts with butterfly nuts allowed you to roll the quillt into an ever-smaller work surface (keeping the backing tight as you tied knots 'quilting' the backing, the fill and the decorative top every 2-4 inches. The frame could be perched on the backs of kitchen chairs or rested on a table top and would stand on end up against the walls (tall ceilings in those days), when the quilt wasn't being worked on.
   So there you have it, my sons, the history of those weird long sticks of 1" x 3" in the tobacco shed tied together with an old scrap of material, taken with us every time we moved, and currently housing hundreds of mudwasps, one cell per quilt hole. (Anyone care to give us a hand cleaning the quilting frame?)
September 1, 2001 It's 4:30 a.m.; I've been up since 11:30. Just getting over a time of coughing, vomiting, chills and the shakes. I'm guessing it's stress-induced, and yet the cause of the stress is, without changing the way I am, pretty unavoidable.
   I realize more than ever, this Labor Day weekend, how many people love me and wish me to be well again. They gather from miles around to visit, tell me jokes, cheer me up, invite me on vacations, try to convince me I can kick this thing. They tell me that they know folks who've been worse off than me and, through their faith, or under-the-counter drugs, or miracles, have survived long past their due dates to die. I understand it is their fear for me and their love of me that brings them to my door.
   My social worker suggested a sign on my door asking people to only stay 15 minutes; explaining that I get tired very easily these days (true). The result? Instead of sleeping tonight I envisioned people waiting in lines outside my door for their 15 minutes of my time, and having to set up a daytimer to keep track of who's turn it is. Just writing this, this idea of sending a favorite aunt, uncle, cousin, friend away from my door with "sorry, I'm just too tired", has brought on another bout of vomiting and the shakes. I know there'll be no more sleeping tonight. Why is it so hard for me, even now, at the end of my life, to put myself first and take the damn naps when I need them?
September 4, 2001 I've posted a sign on the door asking folks to limit their visits to 30 minutes. I hope I don't offend too many more people by my need to take care of myself first. [Cousin ... I do hope you come back sometime soon. I'm sorry you were offended by my insistence in taking a nap when you wanted to visit. Though I realize you drove a long way to see me, my body makes the rules these days, not I. And the rules laid down by physical necessity are, unfortunately, unbreakable.]
   Went to church on Sunday. It was much more difficult than I expected. I attended Sunday school while I was growing up and certainly had my quota of funerals and weddings in churches, where I lip synched the words of the gospel songs listed in that day's program. (I can't carry a tune in a bushel basket) But never until Sunday did the words in those old hymns hold so much personal meaning.
   I started crying with the first song, thinking about getting closer to God, and could hardly stop the rest of the service. Came home and slept for five hours trying to forget the future. I guess I'm not as resigned to this end-of-life, going-home-to-God stuff as I try to make myself believe. As grateful as I am to the wonderful welcome and kind words received from the pastor and the entire congregation.. most of whom I've known since I was little .. I'm not sure I have the inner strength to attend again soon.
September 6, 2001 I just finished writing, and erasing, three long paragraphs whining about how bad I feel and how difficult it seems to be for some people to believe I'm ill, because I always seem to be laughing. All I can really say is Thank heaven for making pharmacists and researchers who, though unable to find a cure for this dread disease, have found ways to bring those afflicted to the end of their lives via a nearly painfree roadway. And please don't ask why I'm up at 1:36 a.m. writing this.   :-)
September 6, 2001 later that day... Amazing, isn't it? Two entries in one day? Even if you're not amazed, I am. My hospice social worker spent time with me this morning explaining how the end will come and reassuring me at each point of fear that I brought to light. My increased sleeping and lack of appetite is, he says, pretty normal. The body understands the need to gradually shut down; he helped me understand that I need to accept that my mind, too, will follow the lead of my body until both, in unison, do the parade wave of farewell. Dying isn't fearful to me anymore, which is an indication that my head is catching up with my body. I have fewer regrets, knowing in my heart that my sons will do beautifully in the rest of their lives just as they have done in these first two decades of their existence. They are compassionate, strong, and independent. I love them dearly and they know that. My spouse, too, accepts my ending more now and has given me the permission I needed to leave whenever I feel I'm ready. I'm not ready quite yet, but I can see the end now .. and know I'll be loved throughout the remaining years of those who love me and who I must leave behind.
And you, kind friends and family, I know you in your hearts also give me permission... that you do not wish me to stay beyond my capability to live a painfree life. And I thank you for that. As these days pass, I will continue to be brutally honest with myself and with others who ask. I hope you will continue to support my ability to recognize my limitations, even if it interferes with your own plans for saying goodbye. I've promised those who want to come by that I will be available as much of the day as I possibly can, on September 22nd at the Horse & Colt Show in Viola. So that, even if I feel unable to entertain you in my home (and this is happening more and more frequently these days) you are more than welcome to come and watch the parade with me, and laugh some final laughs.
   [My sis has been here this whole week and I thank God for her intelligence, her compassion, her understanding. Besides being a marvelous match in Scrabble, she always seems to know the right thing to say to bring me back from the brink of self-indulgent tears. She has accepted the difficult responsibility of seeing that our Mother is cared for during her last years and I am so grateful for that. Bless you sis. Have a safe trip back to NY tomorrow.]
September 9, 2001 The colors are changing in the woods. The turkey vultures flock in ever larger numbers. A schoolbus is coming by twice a day. I love the freshness of fall.
September 10, 2001 5:20 a.m. I'm really getting tired .. of being sick and tired, of waiting for the end I know is coming. And since this thread of thought isn't at all upbeat, I'm not going to write anymore today.
September 12, 2001 Greeting the morning yesterday with nightmares even hub found it difficult to wake me from, the day played out with the Twin Tower destruction. All morning long, and most of the afternoon, I fretted about my sister and her family living on Long Island. When she called saying everyone was well, I breathed relief .. and then felt guilty for finding any kind of relief in such a horrific situation. But that's what we do .. worry about our own only. Our apathetic attitudes have brought this disaster upon us. The live and let live philosophy, the unwillingness to argue common sense, provides fodder for the animals who would wish to control our lives through wanton destruction; those with so little humanity that kamekaze attacks on thousands of innocent people isn't given a second thought, just accepted as the only way to fight their religious or political foes. I'm frightened of leaving my sons to this chaos when I should be terrified that the chaos will continue.
   We used to depend upon our nation's leaders to help us make sense of these tragedies and get us through them in a mature and tolerant way; and when we lost confidence in our leaders we would replace them.. I do not feel confident that our current leaders are up to this task, and fear that allowing them to continue their current path of fighting fire with fire will compound yesterday's brutality. As long as politicians are unable to work together in a nonpartisan way, there is no hope that they will be too concerned about other nations dealing with their problems in the same attack methods they use, whether verbal or military or crime-based. I weep for the future of the world and hope the humanity I leave behind have the strength and courage to rebuild the sanity we've let disappear into pockets of greed.
I don't know if anything I've written this morning makes sense. I just feel in my soul that as long as we worship money, and the Twin Towers were, after all, referred to as America's Financial Mecca, we will lose the war of humanity.
September 14, 2001 The nightmares continue unabated. I'm not sure what's causing them, only that they persist and grow in intensity. The nouns are usually different each time; but the verbs are almost always the same .. I'm being chased .. by faceless hordes, tormented souls, cartoon snakes. The thing that is most scary is that I'm finding it more and more difficult to wake up from them. Twice this week, my hub heard my cries, rushed half asleep to my bedside and had to shake me awake from my horrors. Do any of you have surefire nightmare cures? If I die within a nightmare, am I doomed to know that nightmare throughout eternity?
September 16, 2001 I keep analyzing my level of liveliness. Trying to figure out how much time I have left. Wanting to know if the things I want to do are within any range of possibility. I've been told to make a list, prioritize it, hand out to others those things I don't think I'll have time to do myself, get moving on the things most important to me. Trying to figure out what will be important to others is somehow more difficult now than when I was in the military, or had my own business, or even when I was first learning to be a mother.
   There are people I want to say goodbye to, and yet I know I never will. Either the distances are too great, the mindsets too divided, or the fear of an aloof reply sets in. "Ok, bye then." Somehow I could not bear an aloof reply. Just goes to show you that even though my body is deteriorating and getting ready to let go, my sense of self, my ego, still fears rejection. Silly, I suppose. Here I am, closer to the ethereal plane than anyone else I know and yet I am still so well-attached to earth it matters what people think of me.
     Three of the four quilt tops are built. I've borrowed my mom's Amish quilting frame and am trying to figure out how to attach 3 pieces of a quilt to 4 poles.. I've only seen two-pole frames before. And what if I want to forego the batting? Everyone is being very helpful, sending me websites, offering to help tie the tops to the bottoms, pumping me up. I truly am running out of ways to say thank you.
   Thanks to those who sent suggestions re the nightmares. Turns out it is Very likely the mixture of medications. Wish I could hand out a prize to those of you who were right. :-)
September 17, 2001 I put a line on my Yahoo profile: 'Last Public Appearance: September 22nd' and I think it will be.There are many things I have not done that have been suggested I do do. There are many things undone I initially thought I should do. But I'm tired. My sons know I love them unconditionally. My spouse knows I've given him my life these last 27 plus years. The community, friends, relatives, acquaintances and people I've never met in person know I appreciate the gifts of humor and caring they've given me. But I'm tired and ready to let go. It doesn't mean, of course, Setpember 22nd will be my last day .. I certainly don't have that kind of power and I really have no idea how much time I have left. But ... well..... I'm ready if She is.
Later: I wrote that last bit in the wee hours ... also known as the weak hours. I suppose this is just another symptom over which I have no control. I've been weeping off and on for two days now. The tears come unbidden, without excuses, without advance notification. Perhaps it's because I've been so long 'terminal'. Not wholly alive and not near enough to dead. Unable to do what my head and heart and body desires; unable to remove this burden that I'm becoming. Self-pity ... yes. It's all a matter of beliefs, I'm told. But I've always played devil's advocate; always taken the underdog's side. Now here I am, truly nearing the ethereal, the golden gates, the bright lights of eternity and I don't want to go. I want to see my sons fulfill their dreams. I want to hold a grandchild. I want to see the Louvre and be able to wander through it on my own legs for days and days. My personality has split. One side accepts the coming event with sighs of relief for the loss of pain. The other side says no .. there's no reason I should have to go .. I've done nothing more wrong than a bjillion other folks who will live to join AARP, who will attend the weddings of their children and the births a new generation. But I cannot change anything. I cannot give myself life any more than I can take what life I have left away. I have absolutely no control ...    and I am afraid my speeches at the Gates will not be adequate. Is there any possibility I could gain entrance to Nirvana by taking an essay test instead?
September 18, 2001 I don't imagine I'm the first terminal patient who's endured depression, but I'm guessing I'm probably the wordiest.                                        There are reasons why it's good for me to sometimes just shut up.
September 22,2001 I want to clarify something here .. anytime I write, these days, about pain .. pls understand that the medications provided are taking care of my physical pain and discomfort. But there is no drug for emotional pain.. for the pain of leaving.. the pain that comes from fear. I am enormously grateful to the hospice folk who do whatever is required to ensure my freedom from the pain this disease brings with it. And it is only within my head that I can alleviate the pain of my emotions.   But then being considered a 'headcase' is nothing new with me.   :-)

September 23, 2001 I've survived the parade; though had it not been for the tremendously decreased number of horses this year, I think I would have napped right there on Commercial Street. Felt embarrassingly famous though .. all the family wanting pictures of them with me. I imagined, when they were being taken, the times they might be viewing those pics and what they would say about them when they did. 'Ah Debbie, wasn't she just a riot.' 'It was just too bad about Debbie, she was so talented.'
   Now don't deny it, I know every one of you think, at one time or another, how other folks view you .. and how they will view you once you've departed for the pearly gates. Much of what we do here on earth is predicated by other people's opinions. Perhaps not to the extent that I do   :-)
   The most wonderful part of the day was having my three sons and hub standing behind me.. helping me rise when I stood for the flags going by, hearing their laughter, knowing they were having a good time at the same parade that kept me entertained as a child.

September 26, 2001    As I continue to become weaker in body, my mental capacity also appears to be diminishing. I'd guess I'm saving up my smarts to pass the quiz at the Pearly Gates. Whatever the excuse, however, I don't feel very inclined to write here anymore. My youngest son has agreed to write the final words .. or rather the final date .. of my existence when I get there, so don't worry about not being informed. I'll also have hub e-mail all of you who've corresponded with the memorial information. I will say that any memorial you would choose to make in my name be given to the Vernon Memorial Hospital Hospice Care Program.
   Healthwise, I'm declining. And that's all the detail I feel comfortable sharing anymore. I love all of you who have come here, read these words, and gone away knowing more about me and about cancer 'therapy' than when you arrived. And I love especially those who've gone one step more and said a prayer on my behalf. I do hope your lives will be long and filled with joy.

Deb