Since my last posting, I've entered the Wilshire Hospice Program, which is to say that things have sped past the speed of light and slid down into absolute down-time, all at once. In other words, neither the brain nor the computer seems to be working properly. But then, as some wag would say, "How ever can you tell?"
But here's an update on my recent Grand Pre-Estate Sale End Times Garage sale, we managed to raise $1,182 for the Wellness Kitchen, They have a wonderful "pay-it-forward" program to help reach and teach people facing health issues who can be helped by way of of good nutrition. They can be located at www.TheWKRC.org or at (805) 434-1885. And for all of you who help me with this project, I can't thank you enough. I'm am so blessed with so many kind neighbors and friends who were ready to step in at a momemnt's notice. My thanks to them all.
So many of those same friends have also been there to help get many things settled as my house, like Penelop's loom slowly comes unspooled. (I'm still trying to figure out just how in hell I ended up with 4 table cloths all the the same color. Yes, it's a nice peachy-pink, but, c'mon!)
In the meantime, life, even in Hospice, goes on. As a matter of fact, that's the credo and while it'll be a bit of a puzzle and a bungle, well, that's about right as well. My hugs to all of you. The precious, fragile thing you hold in your hands every second, well, that's it. Life. Treasure it.
Sunday, May 31, 2015
I Need a Nap
A friend sent me a copy of Tom Brokaw’s “A Lucky Life Interrupted.” (A good read by the way) And I was oddly comforted to read that pancreatic cancer strikes one in seventy-eight men and women. My peeps! It seems like I’ve got a lot of company. He also notes the one devil fact about the disease – how sneaky it is. How low it flies under the radar which means that by the time it’s discovered, it’s almost always too late.
It sure must have taken my Docs by surprise. They must feel awful, as in Well, Dang! But then, maybe not. So far, I have refrained from calling them up to say, “I told you I was sick.” That would be churlish. And, realistically, who’s to know, with a disease this sneaky. You'd have to run tests every 24/7 since if you missed even a month, a week, a day, you'd likely still miss the seeding. In my case, all my blood tests were “perfect,” and since doctors are trained to look for horses, not zebras, when doing diagnostic workups, this is one of those diseases that can get past even the best gatekeeper. (Not to mention the cost of various tests, and with tests involving radiation, there's the problem of the test causing more harm than giving any benefit.
But the thought is still there, like the cancer itself. A poisonous variant on the old whine, "Why Me?" Or, it's deadly cousin: "If only." Perfectly natural, but not helpful. I have had a lot of such thoughts lately. Plenty of time to ruminate in the early morning hours.
I am absolutely sure that my one-in-78 Peeps have had the same thoughts. And well-meaning friends are now coming to tell tales of many such caught-too-late medical horror stories. The tales make me angry and sad and cynical. And something of a fatalist since life itself is constantly turning on just such missed moments.
In my case, there were additional wrinkles that made the ultimate diagnosis a sort of Max Sennet comedy of errors since the symptoms were coming in wrong – are we looking for a kidney stone? kidney disease? some bowel problem? Whaaat? Add in an overall physical system constantly disordered from the in--and-out middle-of-the-night emergency room stress, a poorly handled initial "solution, no sleep, and generally lousy pain management, by the time I left the French Hospital radiology office with a print-out of my MRI diagnosis in hand, I was already deep into PTSD.
Add in more exhausting maelstroms of replaced kidney stents, an actual biopsy, MRIs and PETs to come, my brain was stumbling along in exhausted "D'oh" mode. But instead of resting like a normal, sane person would do, in front of my sister Joan's horrified eyes, I turned into grim-lipped Brunhilde preparing for a Viking funeral.
An aside here: Many, many years ago, when my sister was visiting, I looked around at the book and-art-and-stuff-filled living room (and, mindful of the filing cabinets and boxes of Can(n)on fodder paperwork in the den), I wearily said, "I can't face sorting all this out. When I die, I want you to invite all my friends into the house for a Zorba the Greek giveaway (I didn't have a parrot, but if you've seen the movie, you get the drift, have them take what they can use, then put my body on the dining room table, light a match and run away. Viking Funeral!
Then, months ago, I can't remember, maybe it was like a New Year's resolution and long before any of these health issues were on the radar, I did my usual, "Gosh, I've got to seriously sort all of this out." ( I have no doubt my body was telling me something I wasn't ready to hear out loud) So, I started looking around the house and asking myself such questions as: "How will my poor sister, Joan, know what to do with all this crap when I die?" Or, after opening a closet door looking for a towel, "Why do I have four lamp timers in here? Seriously? Four?"
Live in a house 31 years and you'll know the feeling. One of those annual spring cleaning projects that usually last a day and a half then peter out with you stumbling upon your childhood winkie-bear which you couldn't possibly bear to part with. So winkie-binkie bear gets put back in the closet along with the amp timers until . . . next year.
And so I started going through all of the stuff with serious intent. At first I found it hard going. So many decisions. Like, Do I think my niece or great-nieces would like my childhood photo album? Look how cute I was. Surely they'd just love to have that valuable piece of the family tree? Answer. NO. Well, what about my high school yearbook? NO! NO! Not even winkie-bear? NO!NO!NO!
When I started the process, it was all sad-faced review, a spotty walk down memory lane but soon it became a gleeful rout. Out! Out! Don’t need any of this. The photo albums were filled with people, half of whom I couldn't remember, while others too often brought up memories of sadness and loss, so why keep photos that make you sad? The few images I wanted to keep were already burned into my memory, so I sure didn’t need any albums. And so it went with photos, papers, mementos. All of it. Yes, I was seriously, deliberately erasing a life -- mine --but soon the act became a pretty wonderful, liberating experience because it finally occurred to me that the life I was tossing into the recycle bin was a life that didn't exist any more. And since it didn't exist any more, why dust it?
After I received the diagnosis, but before I had met with the oncologist, that's when I turned into Brunhilde before Joan's horrified eyes. I didn't then (and still don't know), how much time I had left, but through my exhaustion, pain and fear, I was determined that there was no way I was going to say, Fuck it all, and leave this mess to my poor sister.
Therein started the Great Pre-Estate Sale, Viking Funeral, Zorba the Greek Garage Sale of the Century. Out! Out! Out! Like mad warriors and with the help of friends, when sleep wouldn't come, as pain allowed, we boxed and tagged and hauled. I had years before made certain arrangements for earmarked items to go to specific places, so that paperwork could be turn-keyed, while the rest of the stuff was slowly being transferred to the garage, stacked and ready to go.
So, come Saturday June 13 at 7 in the morning, the Stuff will head out into the universe to become treasures for somebody else to enjoy. With an additional mad scheme attached: I'll be donating all the proceeds from the sale to the "pay it forward" part of The Wellness Kitchen (www.TheWKRC.org), a great group of folks who teach as well as cook prepared super-nuient dense foods (think "bone broths") for "individuals facing serious life-altering disease." Their classes are for caregivers and patients alike.
Looking back on it all, it was mad. I was mad. But it also turned out to be excellent therapy. Not only did it keep me busy, but it was a daily reminder not to get mired in the past, not to stop, to keep moving forward. It was also a daily discipline, a firm reminder of the impermanence of it all. Nothing was mine. Not even my life. All of it was (and always had been) on temporary loan to be enjoyed, then let go
It also turned out to be a good way for friends to process what was coming. Once you hear bad news and say, I'm sorry, the next questions is What can I do to help? Seems like garage sales are a pretty good answer.
Posted by Churadogs at 5:57 AM
Thursday, May 28, 2015
I heard through the grapevine that a kind friend wanted to loan me her old laptop so I could continue to write no matter how crappy I was feeling while the Cancer Crazy Road Trip gets underway. It was such a sweet offer and immediately conjured up visions of The Artist all tucked up under the coverpanes (pink with flower sprigs, a nice rosy checkerboard pattern, maybe a stuffed white woobie-rabbit under an elbow) while the Muse dictates. Tap, tap, tap, wondrous insights about Life and Death flowing easily from under my fingertips.
It was such a lovely picture and I thanked the friend of a friend who put the idea forward and said I'd certainly keep that option in mind but for now I was still able to shamble out of bed and sit at the compute, a crazy dog lady wandering around the house at the odd hour.
The problem with writing while sick is that sick always takes precedent. When it's a choice between a trip to the toilet or the mot juste, the crapper wins out every time. That's the one iron rule of the human body. It's wishes will be heard. The rest is just icing, illusions that we are in control of our fates and masters of our souls.
Souls? Maybe. But toilet time? Ah, not so much.
And pain. Can't forget that little demon. It's the great interrupter -- one constant, stuttering "D'oh!" in the brain. The slap upside the head that stops the mot juste search in its tracks and substitutes inspired verbiage for getting up and stomping around for a while muttering, "Ow, Ow, Oh, crap, Ow."
The Docs like to speak of "pain control," nowadays. Or "Pain management." That's a new field of study. A welcome one to be sure, since for too often pain just hasn't been effectively dealt with or understood as the killer it can be. Truly. Pain hammers the body something awful, adding insult to injury. Both physical pain and psychic pain. It's all hard.
But our allowable drug formulary in our weirdly drug-addled country is totally inadequate to the job. (And, to be fair pain medication carries with it its own tricky damages as well. Tough needle to thread.)
Even "imaginary" pain is an amazing hammer. When I ended up in the emergency room with the first inkling of what was coming down on me, the CTs indicated a ureter blockage and the Docs thought, "kidney stone's stuck." The pain, they said, was as bad or worse than childbirth pain. Real knee-buckler stuff. And out of curiosity (once the morphine IV was making life bearable again) I asked the Doctor about this and was told that the kidney, per se, didn't have any nerves. Neither did the ureter. Not like other organs or parts of your body. So I asked him how in the world a little thing like a ureter tube, a tiny bit of wibbly flesh could generate such hideous pain?
Well, turns out that the ureter isn't "in pain," but the inside of the human trunk is absolutely bathed in nerve networks, all surrounding all the vital organs. And when the body, in it's "gut wisdom," senses that something life-threatening is amiss inside you, all the nerves start firing off like claxons. So even though the ureter in this case wasn't actually being "harmed," i.e. cut or damaged, the nerves figured that something was up to no good and all hands better get on deck. Which they did. Loudly.
Later this morning I'm headed in to see a Nurse Practitioner (the coming thing on the medical front due to the lack of doctors in our brave new world) to see if we can come up with some practical "pain management" that keeps me "comfortable" without turning my brain to mush.
Which is going to be a trick since I've lived with some degree of pain for so long I really don't have an idea what "comfortable" means any more. I suspect on the scales they use -- Zero being no pain and 10 being OMG! -- my zero would be somebody else's 2-3. Like what an luxury to be able to say "zero." But you don't get to a certain age without carrying with you all the dinks and donks and blows and falls you've inflicted on your body. Rattling bag of bones and ouchie tendons grumbling along making the best of it.
Which, let's face it, is about all we can do. Grumble and open our bag of tricks and see if any of our nostrums help ease the way -- eye of newt, way cool hemi-sync earphones and glorious new age hemi-sync music that's supposed to reset your brainwaves or maybe bring in some short-wave messages from old Earl out there in Hog Hollow West Virginia, yoga, tai chi, meditation, or lovely aroma therapy.
And if it works without exacting too high a penalty, it's all good. Including getting out of bed at odd hours and scribbling into the quiet morning. Or snuggling down in the coverpanes with a laptop, though using that that platform might be too tempting to get distracted by a e-book or a movie. Sitting upright at my computer in the office/den does have the added benefit of resembling "work," so I can claim I'm not frittering away my time.
Posted by Churadogs at 4:03 AM
Monday, May 25, 2015
Parting Shots: The Death Diaries -- A Comedy in a few acts, maybe.
I have always known
That at last I would
Take this road, but yesterday
I did not know that it would be today
I've been on hiatus for a while, in case you've noticed. And I wasn't sure if I'd even return to the Can(n)on again. More and more the utter idiocy unfolding around me has gotten so silly that it just got harder and harder to expend any energy on any of it. (I know why Jon Stewart's getting out of the Biz. Once all you've got left to satirize is Louie Gomet, you'd best pack it in.)
Three months ago I had a life. Busy, active, from dawn to dusk on the move. Walk dogs, prepare for the summer's Garden Folly garden, make soup, eat soup. Same old same old.
Then that life was gone. Poof! A trip to the emergency room a confused, unclear diagnosis, bewildering emergency stop-gap proeedures, an ass-backwards muddled diagnostic search filled with growing misery and disppearing strength (including the loss of my two dogs, an awful blow on top of this unholy misery) finally a report nobody wants to hear ever from any doctor anywhere: Stage IV pancreatic cancer.
That's when the world goes silent. And then changes forever.
And now I'm hip deep in the maelstrom of Cancer Land -- a bewildering forest of Doctor appointments, research material, unknown unknowns, known unknowns and overwhelming confusion. I start a chemo program next week. It's no cure, but "cure" just doesn't seem to be a word oncologists use very often nowadays. The new rules seem to be: Live for a while. Try something else and live for a little more while. Wash, rinse, repeat. So the trick now is to learn how to live while dying. Or vice versa. And it's bound to be a unique and interesting journey. One that I'm sure many of my readers have already been on, are on now, or will be about to start as the body's clocks tick over and transform all our lives.
If that's a shared journey for you, please add your voice any of my future entries. (Dealing with the medical establishment, you just know I'll have some apt comments to carry on about, don't you. Yes, yes.) And if you are a fellow wayfarer and citizen of Cancer Land, I'm sure you're full of news of far wonders as well as practical sources of where to get a good cup of soup that the body can handle. So, do share.
Meantime, through it all, I have to remember to . . Breathe.
Posted by Churadogs at 7:24 AM