What does The End look like?

First Friday of the new year. It’s been a balmy holiday season. A night wind is builds up. The house is redolent with the wonderful aroma of several comfort foods cooking at once. My sister came down for New Year’s and Mom has managed to break out of her prison with my brother. It’s nice for everyone involved, and Hubs thinks I should “pretend” to be sick more often, so they’ll come and cook a few days a month. Wouldn’t that be lovely, to just pretend I feel as badly as I do. I think I might be on the brink of death, but no one seems to see it that way. My sister just walked up to me and said, “You’re not doing too well are you? The kids (nephews & niece) need a babysitter tomorrow. I can keep cooking if they come here, otherwise I have to go to their house and not finish the cooking.” She told them her primary reason for coming was to help me out by cooking, but there’s never a time she’s come down when they haven’t asked her to babysit… and of course, they’re as oblivious and uncomprehending of my illness as most people. “Terminally ill” must be like a TV ailment or something.

Had Zometa (bone treatment) infusion today, fell asleep afterwards and missed acupuncture. Probably over-ambitious, two treatments in a day. Shortness of breath seems to be worsening. I can walk three steps before becoming completely winded. Makes no difference how slowly I walk or move – the smallest effort results in panting and gasping for air. My heart rate was 114, even after a few minutes of sitting. For comparison, there was a man in his 70’s at UCLA whose heart rate was 68. I hesitate to go the doctor yet again. I’ll get a chest X-ray, perhaps a new inhaler, another scolding from the trial doctor? The nurse practitioner I saw prior to receiving the second study dose had nothing to say, add, or otherwise illuminate the issue. Hubs had to wheel me from the treatment room to the car. I’ve had a few headaches today, and my shoulders are tense and sore. Blowing my nose yields blood clots mixed with mucus. Pericardial effusion? More pulmonary embolisms?

Am reading The Book Thief, which I bought 6 or 7 years ago. Not sure why I haven’t got round to reading it. It’s morbid and charming. I hear the movie was liked by critics but didn’t do well with audiences.

I am swirling in a vortex of ab, back, rib, hip, neck, and chest pain, some dizzy/lightheadedness, GI discomfort, distress by the loud talking and banging in the kitchen, even through headphones and music, stress from watching my Mom’s cognitive faculties slip… sorrow from knowing she feels even more alone in the world, because everyone is tied up with their own concerns – me with my spiraling illness and all that entails, a longterm house guest, and a morass of uncompleted responsibilities; my sister with being 450 miles away (out of sight, out of mind), Hubs with work/travel, his lately all-encompassing preoccupation with quads, and trying to teach a decade of life skills and turn his brother’s life around in as short a time as possible. In the end, it all falls on me and my incapacity to deal with all the situations at hand.

When I’m in so much pain – the usual state of affairs – my mind immediately shifts to thoughts of friends who have gone ahead. I go over what details they mention while waiting to pass on. Unfortunately, unless one is in the dying’s presence, asking how they feel, or the dying is dictating to a dedicated journaler, it’s pretty much impossible to get the their perspective – physical/emotional/intellectual/spiritual – as they go, in between periods of consciousness, of course. Caroline was the epitome of utilizing a dedicated journaler, and I am eternally grateful for the gift of sharing her journey towards (physical) death. This was made possible by having euthanasia as a choice, I think. It becomes more of a planned event, rather than an agonizing, Waiting-for-Godot death march. As personal, intimate, and vivid as the accounts of her final days are, it can only represent crumbs of everything she was experiencing. Her husband did a remarkable job, I think, of extrapolating the psychedelic world she swam in during that time.

I’ve been thinking and talking about death for the past 7.5 years. I don’t think I’ve felt as seriously about it for as long of a time as these past two months. It’a “This is for real” feeling. I could just asphyxiate in my sleep, or run out of breath on the driveway, or have some other unforeseen event.

Note: this post is incomplete but in light of recent events, I’ll put it up so the next posts don’t seem quite as abrupt…


6 thoughts on “What does The End look like?

  1. I don’t know you.. but I’m sorry you’re so ill.. Remember to ask the healing angel Archangel Raphael to remain by your side until the end and possibly heal you or at least make your last days more comfortable as you go to the beautiful light to reunite with your loved ones. : )

  2. Please don’t be so hard on yourself. It doesn’t “all fall on you and your incapacity to deal with situations at hand.” You are sick, and it is everyone around you who “pretends” or doesn’/can’t deal with your illness. I know how even when surrounded by so many people, you are still alone. Alone with your pain, alone with your thoughts, alone with your fears. I was, except with you. Even if it was only thru texts or phone calls. I knew that you knew. You knew the pain of a biopsy needle when I spoke of it or going thru SEs from chemo. I found comfort in your words and I am forever grateful to you. I may not be there physically but when you speak of your pain, worries, fears, concerns…I am there in spirit. I truly wish that I didn’t live all the way across the US, so I could help you regularly/daily during your times of need.

    I feel what you write. As I read…I am in your mind, your body. You are not alone. I know. I understand. I hear you when you say you think you’re on the brink of death. It’s not what I want to hear you say, but I hear you and I know why you think it. Previous posts this past year have been different from those in the past, you sounded more hopeful then, and thoughts of dying were only sporadically interspersed. Now, you speak of it more often. Others don’t want to hear it or face it, but I will, because I’ll always be here for you.

    Try not to worry and take care of everyone else (I know you will anyway). Take care of yourself FIRST and get the rest you need. I’m a phone call away and I will come to you, just say the word. I keep you close to my heart and you’re always in my thoughts and prayers. Love you Jas!

    • The last thing in the world that you need is to be hard on yourself, Jazz. Cut yourself some slack. Let others deal with their own burdens. You just love yourself as much as we love you. I haven’t seen you in nearly seven years, since you were the courtroom clerk and I was the baliff, but I remember you as young and healthy and beautiful, and obsessed with shoes. I think of you often. You are important to me, and I want you to be at peace. Don’t worry about distressing me. I can handle it.

  3. I sit here reading your words and feel so helpless . I know you are the main care giver in the family and everyone expects a great deal from you . I wish you could talk to me …..Ive always been here I just am so far away to do much of anything aside from being a good listener . I love you …I have loved you since the day my son told me how much he loves you 🙂 I hate that you feel alone with as many people around that love you .Im sorry you feel so alone…if there is anything ,anything at all I can do for you I honestly wish you would ask . I won’t pretend to understand how you feel or how badly you hurt or that I know much of about your disease but I do know I love you and I want to help if I can XOXOXO

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