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…