Saturday, August 26, 2006

8.26.06, Dr. Hands, Dim Sum, and ADBs

Dr. Hands, Dim Sum and ADBs

Get the health issues out of the way first. Normally today would be about the worst on the post-chemo nausea. I felt all right for most of it however, holding up well until the end of coffee after dim sum when I started to flag. I saw that coming. Pain management is going better today, which leaves the sneakiness of nausea as my primary challenge. Franky Scale 7 to 6. (And the chemo drugs finally arrived!) The first half of the day was well worth it, the second half too is quieting down into copasetic calm. Tuna, mango salsa, a movie, little pleasures now.

•The Return of Dr. Hands: A clarification from the “two noteworthy” point I mentioned about Bone Scan Day has be requested. So in order to please. The Dr. Hands story was simply that when I had my port-o-cath put into my upper right chest, the little port for receiving needles and then a catheter tube that moves up from there over my clavicle and then down into my heart for easy drug delivery — my mainline, my doctor was quite friendly with the his hands on service. Very generous, one might say. Perhaps he wanted to make sure I was as comfortable as possible, or perhaps years of medical experience had perfected his bedside manner as a semi-retired surgeon, or perhaps we had something special, which is what I like to think. The special attention might have been creepy on another day but there had been so much bad news and so much tragedy already in the previous couple of weeks that this incident struck me more as comical. Also, having my mother and 60-year old cousin there to watch, and K was there too, made it all the more surreal. Somebody’s unconscious mind had broken the reality barrier and was running amok in the pre-surgery room. I was just witness. And my mother was witness, too, I guess, although she didn’t see anything out of the ordinary. So she said later.

There was a connection between this doctor and our home state of Utah. Small world. So the talk extended from medical to geographical and biographical. All the while I was receiving this extra gift of touch on both pecs and other areas of my neck and chest. Enough to say that it stuck in my mind. So while lying on the bone scan table, my skeleton being slowly read in detail, the technician was making small talk and it turned to his medical alma mater, the University of Utah. “So,” pregnant pause, “do you know Dr. Hands?” And then he waited another second. I wanted to turn my head and see if K was also having this same “What the hell?” moment, but couldn’t. Was he asking me if I wanted more of the special service during my bone scan? Was he with quality control to check and see how my previous procedure was? Who knew?

Turned out to be nothing, with the tech simply making a Utah connection, then telling us how the doctor’s famous for a catheter line he invented call the “Hands Line.” So his intro to that was “Have you heard of the Hands Line?” And so it went. Not as exciting as the first story, just a humorous reminder.

• The original blog items I thought I’d write on were dim sum and ADBs. Dim Sum is a straightforward concept. The ADB, I think, requires some explanation. This morning K and I, the always lovely Ms. T and ever dashing Machine (mostly blog names) went for dim sum in the International District. To Jade Garden. Very tasty food and serious satiation by the time were done with the twenty or so little steamers of food. Chrysanthemum tea, cup after cup, prawns, shrimp, eggplant, lobster, gai lan (Chinese broccoli), and more, more, more. I’m working on gaining wait now. My last doctor visit had me up about half a pound — and I realize that could be just daily variation but as I see it, it’s up. And I’m going to get the rest of that pound and maybe one more.

Showing up late Saturday morning and seeing the place packed, standing room only, people waiting for 45 minutes on the sidewalk out front is a very good indication of how good the food is. So we made the wait, did not try the “cancer” excuse to get up in the line, not yet on that one, and left with stomachs singing. Mine just a bit off key.

• The ADB (Accelerated Death Benefit)
This is not an insurance tool I would like to have to know about, knowledge life would be sweeter without. How often, on the other hand, is knowledge not comforting in life? The ADB conversation I might hold till tomorrow given post-length at this point. It might be obvious what it’s about, but I was planning to go through the psychology of what it’s like to “get certified” as terminal and having an insurance company then give you an early benefit based on this. More later.

Friday, August 25, 2006

8.25.06, The Joy of Insurance

In the middle of cancer, according to my experience so far, there are literally thousands of tasks, errands, calls, and other "things" to do. The experience of being sick and feeling knocked back and forth by either nausea or pain, or constipation or for some diarrhea, or whatever, tends to exacerbate the feeling of lots to do. Being behind the 8 ball is a metaphor that takes on a crazy number of possible meanings here.

Recently, as in last few days, there are meetings with nurses, doctors, and dieticians (this one with no "-tician" in her "diet") during the IV chemo session, calls to get Rx's, trips to pick them up, questions of leave of absence (calls made, forms out, forms in, forms forwarded, calls made again, etc.), and trying to just get the drugs I need to stay alive. This last one, I wish it were hypberbole, but no. Curascript, as I've described before, is the mail-order cartel I must deal with, says my insurance company Uniform Medical, or I will not be reimbursed for the drugs. Drugs in question are zofran, a 60-dollar-per-pill anti nausea drug, and xeloda, which is an anti-cancer drug (i.e., a chemotherapy drug).

The xeloda appears to be just too hard to get to me, so the people call and leave messages like "Your order that was supposed to get to you by Aug 21 won't be shipped until the 26th and that only if you call us within a five-minute widow at the end of February during leap year, send us biometric proof of your identity (eyes, finger and toe prints), and reveal to us the identity of the energy company CEOs who met with Cheney to plan the Iraq War a few years ago. Thank you. Call if you have any questions."

Really, they've only demanded two or three things. They say fax in the Rx and we'll send it; then not you, your doctor has to call it in to us; then, "OK, we'll send it by 8/22 when you need it for the only therapy keeping you alive." Then, nothing. I call and learn, "You'll get it on the 26th" or some such date. "Did I mention I have terminal cancer?" "Well, your insurance company won't approve the 90-day scrip your doctor called in. They only do 30 days." Jesus! So they can't apparently just fill that much and get it to me on time. I have to call the nurse, she calls the doctor, they call Curastript, I have to call them again too or the order's not valid, then we're all set. For Saturday, we think. In the meantime, I've already pushed back the start date for the chemo drug by a day — again, not vitamins here but kind of important ones for my life. Solution, I have to get a 6-pill temporary script filled locally, cost $101, no reimbursement because they're not from Curascript.

The people at SCCA, nurses Theresa and Foon, doctor Sam Whiting — they are great, wonderful "service," all very human and understanding and respectful, etc. Props to all of them. Curascript, I give them the Pile of Shit award for today. Great big pile. Yes, I can get through it all but it's wild how much one has to go through sometimes. If this weeks is successful, I'll get my chemo drugs and begin them only moderately late; I'll finally get my medical leave approved; and I just might get my Accelerated Death Benefit taken care of too. (Any cancer people out there who want to discuss details of insurance, leaves, life insurance, and the like, please let me know. Too much detail to just dump on everyone else but for those who want to know, it's here.)

Franky Scale, 7ish, before the anti-nausea drugs kicked in it was lower, so we keep our fingers crossed. This morning K and I headed down to Pike Place Market and the little hole-in-the-wall crumpet shop, coffee and crumpets with ricotta and boysenberry preserves. Fresh flowers and nectarines. Yummy.

Thursday, August 24, 2006

8.24.06, IV Chemo Second Day, Round 2

Waves of fatigue is the best way to describe today. Getting an accurate description of the IV chemo day, however, is no simple task. For the Franky Scale, perhaps a 5. It needs to be sletp off, I need to simply recuperate. It will come.

Chemo, trip to Trader Joe's in a kind of delirium, some lunch, then to bed. Some crazy chemo sweats. Then to bed.

Wednesday, August 23, 2006

8.23.06, Bone Scan

Franky Scale today was a 6 or so. Not too bad but some wild fatigue at different points. I spent a good part of the day at SCCA, the cancer hospital, too, which can be demanding or surprising by turns. You never can tell. Tomorrow is the second dose of IV chemo for this new regimen, last week being the taxotere and tomorrow the start of xeloda and gemcitabine. Side effects for the first week were pretty minor, nausea not terribly serious yet and, again, fatigue probably the primary issue.

Today's main activity was the bone scan: an injection of radioactive isotopes, good for what ails you, then a three-hour wait, then the scan itself. It's a head-to-toe test where my whole skeleton is mapped out based on gamma rays I give off with my injection cocktail. I didn't get to see the images myself but the Disenchanted Princess did. The tech doctor man, named Mychael with a Y, said the ribs on my left side looked fine. Checking for cancer in those bones was the goal, or rather, ruling it out was the goal; and since he said to me the images looked good in that respect I'm knocking wood, so to speak, and assuming that's a good result. More detailed information should be available tomorrow, but since it's an IV chemo day I'm not going to promise that I'll be able to blog the results. By Friday I will however.

During the test today, about a 20-minute procedure, two noteworthy things happened. First one was simply pain. Since all this started, around the time of diagnosis or shortly thereafter, I've been unable to lie on my back for any length of time, say longer that a couple of minutes, because the cancer pain would just start to take off whenever I tried. I've never pushed the theory that I should stay off my back, rather I've just stayed on my left or right side, used more pillows to prop my head up, and gone with it. (Staying on my left side has produced an odd quarter-sized spot of pain, not terrible though, for which today's test was ordered. That's what all this was about.) But for the test, which is relatively much longer than a CT scan, which I do regularly like a Happy Hour these days, with no problems, this bone scan takes much longer, and I really got to test the don't-lie-on-your-back theory.

I was right. Don't do it. I was able to hang with it for about 15 minutes but the pain was increasing, but there was some chit chat (which is part of the second noteworthy item, that the doctor asked me out of nowhere I thought "So, do you know Dr. Hands?" (yes, pseudonym) at which question I was shocked — if you remember there was that early incident of the special care and attention I was given when I had my port-o-cath put in . . . I'll leave that one there), there was enough distraction that is, and I tried to keep my mind off it. Keep taking deep breaths, don't think pain, try to fall asleep, etc. Whatever it takes. After most of the test, just as the tech doc was about to continue however, I knew I needed a break, had to get on my side, sit up, do something to change positions, which I knew would cut the pain.

What all this means I don't know. That I have cancer in my gut, I knew that already. That there is something about the primary tumor that makes being supine suck, that was simply, or amply, reconfirmed. That's all. Not an exciting story but those are the details for the day. I guess it means that if I'm in for surgery at any point in the future, they'll need to be extra generous with my anesthetic. Maybe that's the only lesson.

Pain is a crazy phenomenon. It's clearly physical, on the one hand, and also clearly a large part of is psychological. I know it can be controlled to a great degree, I just don't hold all the keys to that secret yet. If anyone has suggestions for how to "erase" pain or stop it from registering when you simply have to deal with it for a given period of time, I'd love to hear them. Most of what I've read simply says "You have the right to be pain free," "Don't hesitate to communicate to your nurse or doctor about your pain," etc. Helpful, but then it's hard to say to the pain "I have a RIGHT to be free from you goddamit!" Pain is deaf apparently. Little concern for people's rights. Not a discriminator of persons, as they say.

Till Happy Hour tomorrow.

Tuesday, August 22, 2006

8.22.06, Guest Blog. Melancholy and Mystery of Family - A Salt Lake Journey

[Hey. Here's going to be a Guest Blog from Frank, from the Utah trip last week, a few days old but it's the process of digesting and the digest of processing that was required. Frank also gave it to me two days ago and the remainder is my process of putting off a bit, as is my wont. Today's Franky Scale is an 8, physically pretty good, emotionally very good, a visit from the Disenchanted Princess begins. Also, Mme X had a momentous day that I'm happy about and glad to share part of, so these things add up. Huge congrats to you X. Now, I'm just going to check some edits on the post and will be back with it shortly, tonight. I'll leave this up for most of tomorrow, and if I come with a post of substance I'll put it up at night. Peace.]

Guest Blog:

The Melancholy and Mystery of Family – A Salt Lake Journey.

Traveling across the country to visit a dying friend sucks. Never mind the crowds, crying babies, shoe removal and metal objects at the security points. It’s the anxiety of seeing your dying friend and the fact that you are fucking helpless to fix him. My visit with Mr. Jones was not my last precious moments with him but it crosses your mind. Is this the last time?

My visit with Mr. Jones and his family was bittersweet. When it comes to talking about families and the nuisances between all the players –well…. people in glasses houses, if you catch my drift. Three older sisters, a saint of a mother, a non-existent father, partners, nephews, beautiful babies, the best fucking carrot cake I still think about, and the ubiquitous drama that exists between all families. A friend once told me spending time with families is like being around fish. After three days they start to stink. Amazingly,
it was five days and the fish remained edible.

We all cope with loss differently. I tend to cry a lot. I think about the living Scott and I have shared and put the impending death of my friend out of my mind until we started to talk about what to leave behind and executing a will. Then it hits you. That is living in the now, the harsh reality of losing a loved one, family or friend. It’s reality punching you in the adam’s apple, you can’t talk or even breathe…. so you just listen. Listen to your friend – Always.

The drama started before we even arrived at Sherri and Stepheni’s. The details are hard to grasp – almost unbelievable and you wonder what the fuck was the person thinking. So I listened and listened more, digesting the events of earlier that day that I wasn’t around to see. We all cope differently – Right? Mr. Jones manned up and settled that one.

I spent hours with S and S and there was great pain in that too, the impending unbearable loss of a brother who may be put on a pedestal but I have to say… rightly so. I stood under a full moon with a grieving sister who no doubt loves her brother and tried to make sense of the senseless.

I visited Stepheni at her office to steal her wheels and met her coworkers who all knew Mr. Jones from this blog. The palpable concern and genuine emotion from them all was there too, more coping skills again from anonymous blog readers who were in the midst of a dying cyber celebrity. Greetings to you guys from Mr. McMahon, ask Steph to explain that one.

The big Sunday family get together was marred somewhat by the lack of some family not posting on what will most likely be the last time you will all be together…at least with Scott in SLC. I can’t remember the excuse for not being there but that is something they will have to live with. Sue and Susan were fantastic hosts and coping skills were again ever present with good food and my nurse who made the name Collins proud. To all Scott’s nieces and nephews you were all huge to come and show your uncle how much you care. In the end it is your family that will always come through. After the party, Mr. J and I paid our respects to Daniel at his grave and he reflected on his own loss. The mystery of his nephew’s life and death still haunts him. The sun began to fall and cast long shadows on the tombstones as we left and that moment will remain with me forever.

Finally, how will I ever forget looking into the eyes of a grieving mother struggling with the loss of her only son? Nadine, you will always be in my heart. If the miracle you want happens I will sign up with Mr. Smith. Your bran muffins and carrot cake are made with huge love and as I walked by the pan of carrot cake and stole another fraction of your cake each time I realized food is yet another coping program I need to work on. I love you for your honesty and admire your faith. More importantly, thank you for giving me the pleasure of knowing your son and I hope to one day share all your infinite wisdom with my own family along with my memories of your son.

S and S – thank you for your hospitality again – I love you both!
Mr. Jones…..I am always listening. NO pain please! Do what ever it takes….but please…no pain for you.


Monday, August 21, 2006

8.21.06, New Chemo Wk 2 & Think Before You Die

[noonish post] "Think Before You Die"

I was reading again in another one of the many books on Death that are out there, not the Kuhl book this time, but for some continual nagging curiosity and because I had always had book on "my list," it was the Tibetan Book of the Dead. The long and short of which book, according to the commentary I have is that it's the "Tibetan science of death, and the art of dying," something long those lines. All very mystical, to be sure, but the claim is for a scientific approach to death, science as in the Ger. Wissenschaft, a systematic, formalized approach.

My reading last night was rather compelling for a while, got me to thinking "ok, maybe this is what it's like to try and die, in those actual moments, with a highly concscious lucidity rather than in the grip of blind fear..." Then the commentary moved from the descriptions of the "8 stages of death" that claim to describe the dissolution of each physical sense, corresponding "elemental" changes, e.g., fire to wind, wind to consciousness, etc. —one clear problematic aspect is that all of this is described in the particular and mystical idiom of a form of Tibetan Buddhism, in sum, it sounds pretty hokey unless you can read vigilantly through the metaphor.

What's my point? Well, as I said the reading was compelling when it discussed these stages, idiomatically, but then it went on to talk about the "reality of liberation," the What Happens After That. Freedom from ego-attacment, world-attachment, freedom from all the hassles that cause suffering, and nirvana—if one is so lucky—as this kind of blissful oblivion. Problem is, I start realizing, is that this book, too, just like all the new-age and contemporary spiritualist and religious books that attempt to exlpain death, relies on unfulfilled promises, rosey pictures of promised "after-life," and its own version of the narration no one has ever returned to tell and no one has heard. If you allow for revelation, you can argue against me here. If not, I rest my case. Whether centuries old "wisdom" or latter-day "wisdom," it's telling that each tale relies on the same technique, each type of tale fails in the same manner.

Why is it not comforting? If this question needs to be answered, actually, then it's presumptuous in the same sense most every book I've found has been: someone who hasn't gone through an experience is telling everyone else what it's like. It's fiction in the negative sense of that term: not a consciously wrought linguistic deception that admits its own constructedness, admits that "Hey, I'm just a story, man." When that admission is made, fiction, poetry, theater, art, all convey the most accurate truths we have access to, as I see it; when the presumption of truth-assertion is made, it all falls apart. (Here's the short form fatal argument against positivism.) You could also promise me eternal procreation, my own planets to create and rule, a universe where I make all the rules (as in a certain religion popular in Utah), or you can save me a seat in the angelic eternal choir—though I can't sing, or grant me the return to that energy that is Everything, the nirvanic peace of never having to return. But, explanations of the post-mortem are a bit hollow and even offensive, especially for someone who's really up against the wall.

I do like the idea of a systematic understanding of and approach to death. Why? Because the more ignorance I can clear away, the more fear is cleared away at the same time. The Big Mystery of Death, however, keeps its cool in the face of it all. (If I may quote Elvis Costello, "Death wears a big hat, 'cause he's a big bloke.") Nobody comes back with a notebook and ink-stained fingers. Every explanation fails precisely when it crosses the mortality line and starts claiming what can't be verified. If it's all guesswork, then why not ask the people who are closest to the question? Those surrounded with immanence.

Could I stand accused of not having faith? Yes. Precisely, I'm all about immanent critique. Or, I want to hold on to my critical faculties, rather, as long as I can. Whatever I can learn about the here-until-then, the how-to-live-with-terminal-knowledge, etc., that's the kind of thing I want to learn. Which is also why the book by Kuhl is so good. It does three crucial things: first, it basically doesn't presume to tell you what will happen after you die; second, it treats the dying subject, the dying person, with respect and as a legitimate producer of knowledge; and third, it gives an accurate picture of real-life issues the terminally ill confront.

It seems this has become a sort of rant. So be it. If this blog does any good in the World, small world as it is, I hope part of it will be to address some of those issues for those who care. I hope it simply tells what it's like, in my own idiom. The memoir has the same basic purpose. There is a fairly detailed explanation of my "idiom" in there however, so it's accordingly longer and more personal in a sense. The blog is, well, it's like dying in medius res.

[metacomment: This, the longer post with somewhat more thought put into it, seems to be the result of successful pain management. When I play catch-up with my pain it's tough to sit and "get it all down," the form of what I write reflects that. I get out a Franky Scale number, a few notes on general condition, and the like; but when I chase down the pain a large space opens up for something creative. Something here about poetry and pain, something of Maslow too I guess. Nothing new.]

[a.m. post] Today is day 5 of the first week, started last Thursday, and I keep checking the effects of the new chemo regimen: nausea, fatigue, energy level (when there's no fatigue), general motivation, overall psych. The past few mornings have been slow for me to re-enter to the Real world, and that, after rather sketchy and shitty sleep to begin with. Two nights ago I switched back to ambien for sleep, and this helped, kept me in bed for about a 6-hour stretch at a time, once. That's good for me these days. Last night was truly twisted, after an ambien again, I woke up between 2 and 3 a.m. slowly but deliberately as if were directly because of the ambien, as if my body said "You only get so many ambien hours each week and yours are up!" So they were, so was I.

My solution was to add to the ambien a temazepam in the middle of the night, which may or may not have helped, at least it clogged up my neurotransmitters and blood vessels and still couldn't keep me in bed past 6-something.

What does all this mean? Hm. I'm going to hold off on the official Franky Scale but unless I'm clobbered with fatigue or nausea later on I'd expect a 7.

For various reasons I'm still out a coffee pot and a blender, which I'm becoming convinced I need to improve my quality of life :-), and will probably be out on the search for these between writing bouts. There's also an entire apartment to be cleaned, laundry to be finished, some other shopping to do, to prepare for my guest this week, my disenchanted friend from NY. So, airport tomorrow, bone scan on Wednesday, chemo on Thursday, day of rest on Friday — a weekly plan.

Sunday, August 20, 2006

8.20.06, Just a Number

Franky Scale, 7 overall, bouts of flagging in between though, down to 5s, then up, then flag... just Sunday, books, books, chemo fatigue.

Also, the photos from 8.18, the family BBQ shots, have been changed to accommodate the desires of those shot. So I dropped out of the second shot and Frank and my Mom are there instead.