Waiting for Fedex and other small problems

When Scott leaves San Francisco for work in San Jose, the sky is generally just considering light.

His habit the past few months of parenthood has been to get up and take Madoc out for a walk after he showers. I don't go--it's a cancer perk that I don't have any pressure to roll out of bed and hit the operate button as fast as he does.

It's not my normal mode, though, to be so slothful--I'm actually usually up, and these days I'm huddled in front of my portable heater in the living room having coffee. In losing all my body fat, all that wonderful butt padding I used to have, I also lost my ability to stay warm; remember, I did say I was becoming Californian.

My typical day is usually a balance between "have a doctor's appointment" or don't--don't days, I try to straighten up the apartment, go to the store for dinner (his, not mine), or accomplish something from my long term list of want-tos.

Today I have no appointments, which is wonderful--I'm thoroughly sick of doctor's offices and everything associated with them. I suppose the exception right now is my oncologist's office, where I go weekly. The staff is extremely pleasant, and the news lately has been decent, so the pressure to deal is lessened considerably. It's far worse when I go to someone new and have to fill out the paperwork, a continual re-do of the same paperwork I've been doing since January when my tongue really swelled into the form of a sausage roll.

It's quite lovely here today but it's only in the mid-fifties temperature wise, and it's San Francisco damp, so I'm by the heater, and Madoc is sleeping elsewhere because it's a bit hot for him near me. As of now, I'm nervous because I suspect Scott's new Iphone will arrive and I'll need to sign for it--and I suck at paying attention to messages on my phone. This is important because our front door is programnmed to ring his phone, and he can let people in. I cannot--so for me to know that someone is here, he has to send me a message. And do I pay attention? not really.

In the early going of cell phones, I refused to have one--even when I could talk, I hated talking on the phone and nothing seemed less attractive to me than the idea that someone could call me at any moment and have certain hope of contacting me. It's perversely true that the less I can talk, the more people want to talk to me: Healthcare offices will not email one based on the hackability of email (though the ease of capturing cellular conversations seemed to have eluded them).

I'm treated, then, like a shadow in my own life because everyone has to call Scott, as if he's my parent and I'm the errant sick boy who can't be trusted to answer. Well, they could call me, and I could answer, but they wouldn't understand me. I do talk. I talk to Scott who can't hear me. I talk to our friend Terry who isn't half bad at interpreting what I say--and once some of the swelling I have in my jaw is gone, my speech will be exponentially better. Imperfect, but better.

Without 85% of my tongue, people are surprised as how well I can be understood, and often surprised when I tell them that I have a rather acute ability to taste. I know what most everything I put in my feeding tube tastes like, and I have definite favorites and not-so-favorites. The hardest thing to taste is red wine; white is much easier, it has generally brighter astringent notes that make for better "backwash" in my gullet. I know that sounds gross, but I can't think of a better way to describe it.

While I'm waiting for Fedex, I've been having Orgain Organic shakes and Odwalla Chocolate Protein Monster shakes. The Orgain vanilla flavor tastes like a Dairy Queen soft serve ice cream cone that melted--and being Midwestern, I love that. The chocolate is rich and smooth. Odwalla has too much sugar, but it tastes good. Sugar has funny lingering effect in my mouth--I taste it longer and more distinctly than virtually anything else.

I had spent the earlier part of the weekend, as I wrote before, feeling good--though by Sunday that wore off a bit. That's natural after a big chemo day, and I was incredibly fortunate to have 2 full days of feeling good AFTER they gave me the 6 hour dose. Unheard of. Also unusual--no vomits. But on that score, I have to say I've learned my lesson--I am not superman., This time, I took precautionary anti-nausea pills. To say that such pills don't work when you already think you might hurl is to be obviously oblivious.

I still have the feeling that everything is on a moving conveyor belt to the land of Better--a slow belt but steady. Like an Amazon warehouse, the belt has to stop occasionally, and occasionally wrench backwards somewhat. Problems emerge. But in small steps, the items get to the boxes, the boxes get sent. I'm early in the process, but one of these days, I'll be delivered. Hopefully to a nice address on the continent of health--something like a Sylvia Plath poem I read in "Ariel" with a whole lot happier ending.

Ray of Light

It's a sunny day in San Francisco--not a totally unusual event, but the past few days have seen late afternoon fog roll in, loll around all night, and stick around through the following early afternoon. Then, two scarce hours of sun would hit the hill we live on. The next fog would then blow in, bringing a stiff breeze with it.

Winter is approaching us here, and this will be my first resident Winter season here--I've been here in December, a Midwesterner marveling at Californians in down jackets when it's 60 degrees out--but now I'm one of those Californians. Especially as about half my blood supply is, I think, made of chemo chemicals.

So today is special in that it begins in sun, and other rays of light have poked through other clouds. Yesterday, during long chemo (when I get the full doses and it takes about 6 hours), I started to feel...good. I went to chemo in a good mood. Scott drove me and stayed with me, and somehow, that made more of a difference than when he's done that before. I saw the P.A. Kristen, and all of our news was good.

I went to the Clinical Trials team at UCSF and found that they don't think I'm a hard-up case at all. Turns out, they think it's possible I may not need them. There is a trial I might be right for in 6 weeks, but I may not need it. Erbitux, they think (and I think) is working. The shrinking underarm tumors, the recession of pain, the fact that I'm irrascible--these things point to a re-emergence of normal; a variegated normal, but normal nonetheless.

There's no one single horizon or single sun in Cancerworld, of course. We revolve around various orbs of burning hydrogen here--some signaling sort of better, some sort of worse, some just a way station on the way to others. The horizons change, too, depending upon where one is tossed out of orbit of one star onto the next. Today, the day after chemo,  I feel...good. I plan on walking with Scott and Madoc. I'm hungry.  I slept like a log until 8am. I rarely do that.

Yes, I still have holes in my neck that need to heal. I still have gunk in my mouth that needs to be excised,  I still have a trach tube. But screw it. One thing at a time. One emergency down, the next will pop up to be solved.

Of course I'm no closer to my next Super Duper Burger (if you ever come to San Francisco you must have one). But screw it. Digest one drop of happiness before begging another.

I have spent enough time bemoaning various difficulties and hearing various prognoses that offered nothing more optimistic than the fact that I feel...good. A simple thing. This being my second day of feeling good though makes it a true landmark in that this hasn't happened in months.

Yesterday when I realized I felt good, even during chemo infusion,  I spent much of my time online shopping. I had put off buying anything in case I really did only have a few months left--it would be a shame to leave new clothes that fit no one I know, and  I am a practical type. But feeling good leads one to give oneself pesmission to feel better, and what better than Designer Shoe Warehouse to lift a guy higher? One pair of boots and one pair of natty oxfords later and I felt refreshed.

So I finished with cheapie cotton sweaters from Old Navy and a sale merino from Macy's realizing that I had just given myself permission to feel good, permission to be optimistic and persmission to live as long as I want to, and as long as this body can.

Now I'm going to give myself permission to get rid of this trach tube, learn how to swallow again and hopefully eat something and gain some weight. I do hate the fact that size 29 pants are big on me. And I would not mind having a bit of a butt back to sit upon...

So whatever your Friday brings, let it be a ray of light. Just give yourself permission to feel it. It sounds like an odd way of going about it, but it seems to work.

Confessions of a Whiney Little Bitch

Let me just get this off my chest--one of the biggest problems with so-called reality television is the phenom of the whiney little bitch.

You will encounter said creature on shows ranging from The Real World to House Hunters. For what I watch, House Hunters, the WLB walks through three properties with a 100K budget and says: The rooms are too small! I wanted granite! I wanted stainless steel appliances!

On shows about Kar-trashians, the WLB is whoever is first to, in that stupid baby voice, complain about their overwrought schedule--at least for what I've seen as I speed past with the remote.

Yet, the WLB lives in us all, and I'm no exception--in fact, lately, I've been seriously indulging my WLB side and frankly, I am tired of it. My nature isn't really accommodating to the WLB attitude. I was raised by no-nonsense people in a no-nonsense manner. My parents were both beset by a number of medical problems--heart, diabetes, cancer, lower lung disease (my genetics are truly not exceptional), and I never heard them bitch about any of it. They didn't like it, I was certianly aware of that, but they treated facts as facts and not as advice given to people who like to suffer.

I'm only half as good as they were about my own cancerous situation--somedays, the WLB takes me over and I channel so much self pity that in retrospect I'm sickened by it. I admit, I'm due some private pity--but private is the operative word. That's the Hoosier in me; the Northeastern small farm town stoic Hoosier thing is not conducive to WLB behavior. In fact, it loathes nothing more than the sign of weakenss in the self and is sympathetic to nothing more than the revealed sign of weakness in others--as long as it's quickly covered up again.

In the let-it-all-hang world, that virtue is no longer widely currency in virtueville. We're all supposed to honestly share our feelings about the conditions we experience and those of the world around us. We've set up an entire electronic system where posting those feelings is both expected and welcomed--likeable, thumbs-upped. Comments of support crowd postings of WLBness, my own included.

I am, though, thoroughly ashamed when I realize that though I can't eat or speak well, I am alive. I live very decently. I'm surrounded by love. I can walk. I can have a healthy crap. My brain is sharp, my humor is still with me. I read great books that I can buy from Amazon at a moment's notice. My credit rating is excellent.

Some people believe, much to their credit, that there is no hierarchy to disability--perhaps to my discredit, I believe there is--and my problems come far down the list from those who have lost major systems in their bodies and are tubed, who can't eat, speak, walk, or whose thoughts find no way out of their heads.

This weekend, we went out of San Francisco to a cabin in Guerneville on the Russian River with our friend Margie, visiting from Chicago. The cabin was surrounded by huge redwoods, Guerneville is charming, we all had a great time.

Yet, even in that beautiful setting I still had twinges of WLB--when Margie had this wonderful pork for dinner, when we stopped at an organic bakery in Freestone and I realized that there was no way that sticky bun would ever fit in a feeding tube.

I don't know if it will ever stop. Funny though--Scott hates to cook and I enjoy cooking--so I make as many of his dinners as I have strength and opportunity to make, and I enjoy doing it. If you like to cook, the look of satisfaction on the face of people who eat what you make is priceless. It's better than thank you.

I made dinner last night after we got home for Margie and Scott and our friend Terry--to whom I owe many dinners. A curried, coriandered chicken breast over risotto with roasted asparagus--and everyone loved it. The only downer was the smell of sticky buns, left over, from the bag on the counter.

Maybe certain smells or memories or textures are triggers for WLB syndrome--I don't know. All I know is that to defeat a powerful enemy like the seductive nature of self pity, one has to be vigilant. In the midst of beauty, happiness, accomplishment, there it was--as unwelcome as a fart in an elevator.

Yes, my name is Mark and I have cancer. It's aggressive and doesn't want to go away. I have to have more than the normal cycle of treatment. I hate it.

But I do not want to feel sorry for myself. I don't want to talk about how small those rooms are, or how much better I'd feel if that refrigerator were shiny, silvery and contemporary.  I want to talk about what I'm going to eat when I get to Quebec next August and watch Scott in the Ironman competition--so far, poutine is on the menu. What else should I hope to have?

Pure (Cancer) Reality

Last week, a round of chemo and this week, an hour of Erbitux. The tumors on my chest under some better control, perhaps smaller--the nodules under my arms sot so prominent.  These are signs of progress, slow perhaps, but progress.

The problem, I'm finding out, is that this progress comes against a mountain of cancer spreading throughout my system, hitchhiking in the lymph system to points unknown. The disease is progressing even as I am, and my prognosis is guarded.

This first came up a couple of weeks ago when I had a consultation with an outside ENT surgeon, looking into a wound that has opened on my neck--and in his estimation, surgery was a waste of time as I had a matter of months to live. Months I thought? Months?

Well, it seems that's not a wholly unsubstantiated prognosis--albeit one that doesn't take into account my progress against its progress, and can't rationalize my state of mind and determination versus the raw destructive power of cancer. This prognosis, depressing as it seems at first to hear, is just a guess in a sea of half-spawned data.

It can't be ignored, though--and to me, an optimism that I have that is uninformed is as stupid as defeating oneself before the race is started. What this prognosis means to me is that I have to cross t's and dot i's and be more aggressive. It means I have to guard my mental state to be strong against the idea that this isn't worth fighting any longer, and that is harder to do than you might imagine.

Back in March, I woke up from surgery certain that they'd gotten the cancer, that I would recover fully, and within months, I'd be back at my favorite burger bar. Months later, I see that growing more distant, but not impossible; it would have to be the edge of an island my raft would aim to achieve, a place I need to be ready to grasp, but not anytime soon.

My deal with Scott when we first heard the shortened timeline was not to share it--and mostly, we haven't--my only experiment in doing so seeming to depress the listener to a degree that alarmed me and brought a dinner at our apartment to a screeching end.

Prognosis is guesswork, and can't possibly accept the variables of me, how well treatment goes, whether I'm chosen for a Phase I trial (this is a possibility), what I make of the news. But prognosis does tell me how difficult it is , how high the incline I'm facing (high), and how much miracle to practicality I need in the mix (significant).

As a practical person, I want to be ready to live and ready to die at the same moment--I believe that one can't be too far away from the other. I don't know what happens when we die, though I suspect there's another dimension; I suspect when we live past other's expectations of our death, that's rather similar.

My own expectations and my vision shows me as an old guy, hitting 70, eating a Super Duper Burger and enjoying a dessert. That's at least, prognosis or no, what I'm moving toward every day. Yet I will consider a will, and I will be certain I'm telling everyone who matters just why they do. After all, it never hurts, and it's only fair.  Call it informed optimism.

Vote Now, or Forever Hold Your Peace!

One of the most frightening things I've learned over the past nine months of cancer: in some ways, I know a lot more than the doctors who are treating me.

Scorn, too, for the dieticians I' ve encountered so far--good lord. If it doesn't fit into an algorithm I'm not certain that technical "spccialty" could exist. It stands to good reason that I "know" better than any food expert what works for me, and what feels better/processes better/leaves me more energetic but surely there are some empirical facts by which even a dietician can be useful? No, apparently there aren't...

It was an accident, recently, that started these chains of thought. I stopped at Whole Foods on the way home from lymphedema clinic and bought two Odwallas super protein drinks--chocolate--because they were on sale. I'd had one before and liked it, months back, so the fact that I was hungry and just a short bus ride from home and a feeding tube to slip this stuff into was enough to push the purchase.

Something happened after two Odwallas and a combined rush of 50 grams of protein that I can only describe as normalcy--the feeling that I would be better off sweeping the carpet than napping on it. The idea that it's not acceptable for the glass coffee table to have cup rings on it. The deep, abiding hatred of pubic hair on a toilet seat--mine as much as anyone's--that I have always fought against--these feelings were back. I couldn't not overlook these flaws. I could not excuse them. As surely as policing broken windows and grafitti in a neighborhood led inevitably to a drop in more violent crime, eradicating the unpeakable horror of pubes on white porcelain was a signal that I would no longer be passively accepting shit pie for lunch.

I liked this feeling. My face is still swollen up like I've been repeatedly slapped. There are holes in my neck that drain out stuff from my nose. I blow yellowish crap into tissue to keep from choking. I'm sick of the freak show aspects I have to deal with--I need something to hold onto.

For me, this has always been neatness--at least a relative amount of it. Here in San Francisco, I can only achieve so much of that in a two bedroom apartment. Scott hates reading his mail so it stacks up. I hate putting laundry away so I'm quite laissez about it. No one can apparently shut a clothes closet door here so I've given up trying. We all have problems. But the core of my happiness does touch upon interiors that, while not minimal at its most severe, at least maintain piles of messiness in easy to understand and eventually deal with places or piles. I am not perfect, I don't aspire to it. No one should.,

Yet no dietician, no doctor, no nurse, no organization, no insurance company--no one has made even the smallest, slightest suggestion to me as to how to achieve small bits of normal, and how good even a small one would make me feel. They have poisoned me, and empathized with my puking, and made making appointments with them as difficult as possible (they all conveniently forget that I can't talk on the phone when they refuse to give me an email address to conduct ANY business), but they can't turn around and say--"you know Mark, experiment with your diet and try this or this, maybe it would help...". Not a one of them was competent to suggest that anything other than x number of Nutren boxes a day and x number of Ensure and xxxx target calorie intake was anything but the recipe for smashing success.

I came to San Francisco because of Scott, sure, but also because cancer after-care here was rated so highly--I thought I'd have a better chance of a quicker return to eating, and talking. I thought people here would be more attuned to a wholistic approach, a more patient-centered --dare I say personal? -- way of dealing with the incredible wounds that have been left on every part of me. The fact that I've lost 1/3 of who I was by weight. Fear that screwed a pole of courage into my ass--I figured they could give me real courage.

But they can't, because they won't--my insurance company has paid astounding amounts of money into oncology and radiation and all that bought me was function. Once function was over, fuck me. Good luck. Hope it worked.

Worse, I get small factoids of discussions about my prognosis that never came up while we were in treatment--how no surgical ENT here will touch the wounds I have or the problems with my Indiana surgery--fear of law suits or fear of failure or fear of work. I surmise the fear is that they won't get the 28,000$ my Indiana surgeons got.

I find the words "buying time" come up when I discuss stopping chemo which is making me so sick I lose pounds over a weekend. That's why we're doing it, to buy me time--not to make me better. So why am I buying time just so I can puke into a toilet with a pube on it? Because my happiness is never part of the equation--the idea that a clean toilet is my happiness is unknown to any of these assholes because they haven't bothered to find out.

So, should I keep going with chemo? I vote no, but you can vote as you want below--there are arguments in either direction. They give me more anti-nauseas that might work, and the chemo may knock out a bit more cancer than not, or not--but the argument is without it, we'll never know.

On the flip side, I keep taking Erbitux, which is not chemo, but works against the cancer in a different way and seems to help (the tumors that look like cauliflower on my chest do seem a bit smaller). It only takes an hour a week and I'm inclined to do it. What do you think?

In the meantime, I'm going to keep pushing some high protein drinks into my dietary mix. I've found that I can intake a few hundred more calories per day, I like the flavor, and the idea that I've actually had some energy and done some cleaning and cooking has rendered me feisty enough to tell you that cancer doctors are dumbfucks, and barely worth the money--the incredible amount of money--they've made off of me.,

And I've learned something about myself, too--I have been a prisoner of that fear fuck I've given my poor ass. I'm done with that. I'm ready to be a big boy and step up and fight this differently. I thought I was ready to give up...but there are just too many pubes out there waiting for me to destroy them for that.

New Normal, Old Bullshit

The chronology of my new chemo routine is that every 3 weeks I have big infusion day--taxol, carboplatinum and erbitux, which takes about 6 hours. I had that yesterday on the 12th.

For the two weeks in between, I spend an hour getting erbitux, a much lighter load of infusion.

Having had two of the 6 hour infusions, the new normal is that the day after I have one of those, I'm a puking mess. My throat is invaded by gunk, my nose runs, my stomach rebels. That, I'm telling you, is not the way to start a Friday the 13th.

My oncologist, the frustrated comedian Dr. Kramer, does believe this combo is working--but I'm too close to the patient to tell, frankly. Being aware of every quirk and illness twerp that shakes its insouciant ass in my face, I have trouble separating its reality from mine. They seem blended--as if I were never anything but cancerous, as if I had never had another life.

Recently, I've found my old life fading away in ways I couldn't imagine before I started this awesomely bad trip. My food love is fading. My desire for a Payday bar, a Blizzard, an ice cream cake, a hamburger, a steak, some lasagna, truffle fries--far less powerful incentives these days. As complications mount and outcomes slip further into the future, I'm less likely to want and more likely to passively accept.

It was this way the other night when I made meatballs and marinara sauce for Scott. Of course I "wanted" it, and I smell every food item that comes into this house as a reminder of what was, but I didn't WANT it. Instead I cracked open the stupid Nutren 2.0 container and poured that vanilla shit straight into my stomach. I didn't whimper. I didn't complain.

I don't understand, often, why in a room full of people getting infusions of chemo, I'm the guy who can't eat or talk--the other patients having had cancers that at least didn't rob them of these human activities--eating and talking--that form about 90% of life--or at looks and feels that way when you can't do them.

I'm still jealous of those people, but even that primal emotion is fading, replaced by a weary sort of acceptance that the universe is punishing me for something awful I've done and when the universe spanks, you might as well simply bend over.

I'm finding success in shrinking some of the fluid build up in my face through lymphedema therapy, and I enjoy going to see Fiona, the therapist, and watching the tea tea outside of the window as she retrains the fluid and lymph system on how to drain when the old pathways are gone and the new ones are unknown. She's managed to shrink the face measurement by seven centimeters so far, and that has lifted my spirits. I look like a freak, yes, but less like one.

Yet even that therapy has, potentially, opened up new complications, such as new fissures in my reconstructed throat, a tear in my surgical flap in the mouth--not the therapy directly, but perhaps the pressures from wearing a facial compression mask, or from guiding the lymph juice gusher through new channels....

Or maybe just the coincidence of the body heaving a sigh and letting go of things it wanted to--like staying together, in one piece. Perhaps like me, the fight hasn't left it so much apathetic as it has simply left it tired. Maybe I use the word acceptance when I mean resignation, but I don't think so.

I simply don't want to be upset when another date passes me by which I had hoped to eat, and find I still can't. When I've wanted to jog, but realize that's much further away. When I hoped to weight 140 and find it hard to pass 130.

When I've wanted normal, and normal just won't settle on me.

Terroir Cancer

In the NY Times of Tuesday, September 3, is a fun article about the French concept of terroir--the assertion that certain places, some very localized and contained, create the best of a certain type of product. In the gross sense, the Champage region is a terroir, but there are apparently terroirs for all sorts of things, and many quite a bit smaller than an entire region.

It was a funny article to come across because I've been thinking quite a bit about how territorial cancer itself is, and yet how individualized. My first chemo is theoretically thought to have failed because I am one of a small group of people resistant to it and radiation in combination--there's no way to know before, and no way to know for sure. My landscape didn't support the sprout of its particular asparagus of cancer-killing agents.

No one has told me, and I haven't broached the subject, of how much that may have set me back--whether I received any benefit from it or not. There are times when I don't want to know things but simply want to believe things. In this case, I'd like to believe that I at least scythed the top growth of cancer and reduced its ultimate harm to me. I will in fact think or discuss little more about it. The better version of the truth can grow in the shade of this plot of mental land, for all I care, and stay well out of the light of my mind.

I had a particularly nice Labor Day weekend, too. We have a visitor from Indiana, Charles, and last night, a chili dinner with Charles and Terry. Somehow, the very notion of having two people over for dinner was very exotic (this being San Francisco, any more than that would have been mind blowingly engaging but crowded). I still like cooking, and factually, I make some of the best chili in the world--at least the Midwestern version. I have certain talents that are inexplicable. I make the best drip coffee. I have no idea how or why, but it does taste better when I make it than when Charles or Scott makes it, for example.

When I would visit my family for holidays, they would all gasp at how strongly I made coffee and clutch their throats and gag and lolly around and then ask when I was going to make more. Somehow the secondary and not the primary response convinced me I was on to something.

Chili became, and I don't know how, one of those things, too. Granted, I used to make it in Indiana on a regular basis. Chili is a year-round food to me (or was, I'm looking forward to a return to "is") so I've had plenty of practice. But practice can make poor creations just as permanent as good ones. If one's practice in making cookies involves them tasting like hot crap in the end, bets are on they will stay that way with performance.

These are not empty boasts, then--I have witnesses, and in my personal terroir the disparate notes of well dripped caffeine and well combined tomato sauces and chunks serve their acidic notes waft through the air. I also make the best cinnamon jumble cookies, but that's because I don't know anyone else who makes them. In that case, it's mere supposition driving me forward.

My Labor Day was filled with a kind of peace I don't engage with enough--the peace one finds through conversation and liveliness, my day usually being passed in much more quiet and peace than that. I enjoyed the change of pace. I enjoyed taking an afternoon walk and buying a smoothie with Scott and Chuck, down in the Castro--also something I don't do much on my own--in fact, something I never do. I hate going out alone in public as it's hard for me to order anything, I get stared at which I hate, and much as I do enjoy being alone, it can be uninspiring to have a great choco-smoothie and have no one around to say: "this smoothie rocks my ass."

I admit I don't get out of the house into humanity much, so when it happens, it is notable and I see things I don't miss, but are fun artifacts of where I live. I forget that I live in the epicenter of gay life in the U.S. I forget that the weather that surrounds me isn't a national pleasure. I forget that the little thrill I get seeing the fog roll in watching out of the kitchen window isn't the nightly show in Des Moines.

It's good to remember the territory you live in, and what makes it special, and what it produces better than any other place. Especially good if the territory is you.

Vacation, Cancer, Insanity

Like many working Americans, Scott has limited time to get away this summer. I am tied to a treatment schedule, too, or heck, I could take a Victorian tour. With this limited time, where did we go? Why the broiling, heavy, humid Midwest of course!

Having spent 97% of my life trying to escape where I'm from and what I am (thoroughly Midwestern), there must be some grim satisfaction going on in the afterlife between my parents who both told me incessantly that I'd someday be glad of both my identity and my birth locality. I'm big enough, and they are dead enough, that I can admit they were at least partially correct--I have no problems with my MW identity, and even some of the MW social conservatism that leaks out of me from time to time. 

We had big plans, and big holes to fill in our social agendas, each of which required that we be in Illinois and Indiana. I had yet to meet Scott's parents, I wanted to see his sister again, he had not met some of my sister's family as we couldn't make her funeral, he hadn't met my brother Jim (now the oldest and de facto head of family). And why not work in a night in Bloomington, the place I was living when we first met online ten years ago?

This all sounds harmless and fun, and functionally, it is (and was) except that one guy with cancer being driven around by another guy on an 80 hour work schedule all over the city of Chicago and its burbs, all over the state of Indiana, and all back to Chicago to catch a return flight is a act of insanity in 5 small days. But that's us. 

Day One. I wake with the pukes. Gross, dysfunctionality, totally unexpected and of course unwelcome. At first I suspected that new chemo was having revenge, that all the nice anti-nauseas they'd dripped into me during my six hour intro were leaching away, leaving me vulnerable. Interestingly, by experimentation, I've found differently. This has nothing to do with chemo and everything to do with how I expel the gunk from my throat. Lesson I have learned; DO NOT engage the stomach muscles. They have no idea what you're trying to do, and they are trained to do just a couple of things well. Pass the masticated stuff along, or expel what doesn't work. Given the lack of mastication to work upon, there's a natural reliance upon answer two. I now know...

This however screwed the pooch for eating before I got on the plane, and even during the flight--but the getting on the plane was really the piece of work. A doctor can get me on a plane with open containers of narcotics and there's virtually no problem whatsoever. I look relatively harmless, have no prison record, and they can open the drugs and test them. That part of the experience is fast and painless. 

On the way to Chicago, though, I carried on a couple of containers of Nutren, my food, which is sealed. Oh. My. God. No. I was shunted to the side, politely and thoroughly frisked, my hands were tested for explosives residue twice, my backpack was taken apart. Nothing of me that could be felt up was missed. Had I any residual desire for strange, the TSA agent could have gotten a surprise. 

It's not that they were unpleasant at all--in fact, they carefully explained everything to me, were truly nice (bordering on apologetic) and I certainly didn't feel victimized. i was just amused by the fact that this 130 pound when soaking wet and fully clothed man was truly undergoing the kind of screening I wish had been in place on September 10, 2001.

The flight was uncomfortable, but nothing against Virgin Air, which we took--nice plane, nice ride, just an antsy Mark--I settled Scott in with a Star Trek movie and Bose headphones and realized I had read everything I purchased for the flight on my Kindle app without downloading anything new. Serious planning flaw. Tired, but can't sleep, skinny butt sore but can't adjust much, 3 hours and 42 minutes of seat twerking in a fashion that the slutty Cyrus girl can only envy. 

Upon landing, we find that our first appointment was pushed up--Scott's parents were already having dinner at our hotel! I fantasized that I had an hour to not look like somebody had just pushed me out an elephant's vagina to no avail. 

This, however, turned out wonderfully well. Scott's mother had particularly decided that she would like me because I've already been through enough stuff this year and she proceeded to charm the pants off of me. I am now her fan. Previously, her fearsome reputation for laying it all on the line without gloss (a famous MW trait which I deeply admire) had convinced me she'd take one look and dismiss me as having six months, and not good ones, ahead. Fears completely allayed. 

Our conversation helped too because by the time my head hit the pillow there was no waking me for a solid 8 hours. Aside from the noisome bathroom and hocker breaks in sleep that I deal with, my story was a beautiful mattress in a Marriott Renaissance in Schaumburg Illinois filled with Indian people celebrating either a new Mercedes dealership or a wedding (a wedding, I kid). 

Day Two took us to Tammy's house, for a day of conversation with Tammy and Jerry, Gina and Jake, her boyfriend. It was wonderful, though I have to say that I still didn't feel good enough to have her homemade salted caramel ice cream, and that is a sore disappointment. Also, I find that long conversation using my Ipad "speak it" interface can be really difficult. Typing takes calories people!

Day Three took us to Warsaw Indiana to see my niece Kathy and her husband and kids, and my brother in law Dale, her father--a 3 hour drive, a full afternoon on a porch being catty, and then another hotel room. A side trip to Columbia City, my hometown, to see my brother Jim and give Scott the experience that I refused to allow him to miss--my brother, in his full essence, holding court and messing with me. I wouldn't let a simple thing like tongue cancer deprive him (or me) or that. Some people say I look like Jim. Some people say I act like Jim. All people say I swear like Jim--and that's what I like. Cancer much? I was so tired I could barely move! Time for more driving.

Day Four? Drive like a fool, Scott. From Warsaw to Bloomington, 3 1/2 hours of Indiana. Depending upon one's perspective, that could sound bad--it wasn't the most awful. There are now Starbucks everywhere and the two things that one can count upon to lift Mr. Nelson's spirits--snacks and Mochachinos--are pretty widely available. This is not the Indiana of old, when we offered nothing but McDonald's, Arby's and sweet corn stands. This is the highly sophisticated state that is legislating itself , it's women and gay citizens back into some sort of vulgar Stone Age. Respect!

Bloomington, in the throes of starting the first day of Fall Semester, was barely seen by me--I sent Scott out to Indian buffet with Charles and collapsed on the sofa of Charles' house. There I stayed (it was 90+ outside) until it was time to honor my two recently deceased dogs who had stayed behind with Charles in Bloomington--Hector, the chow, and Hildy, the lab mix. Hector, who died the day before his 15th birthday, was one of the most perfect dogs I've ever know--self-contained, vigilant, proud, but comitted to me and to Charles above all things. Hildy was the sidekick he never wanted, a foundling, with undefinable emotional issues who couldn't live without Charles and dug me well enough. She lasted to 14, about a month past Hector, but without him, her life wasn't quite the same. They joined eternity in a little ceremony Charles and I put together for their ashes, Hector's $2500 leg plate being the only physical evidence left. 

Five: oh five--back to Chicago. Four hours driving, get to O'Hare--and now, I'm somewhere over the Rockies typing on my Ipad while Scott re-reads some Sci-Fi he loves. I look at what we've just done and realize that I have no idea where my limits my, what I can do, what I shouldn't and what I can or can't--and frankly, that's all for the best. 

I've spent too much of my life wondering if the rules were being followed at the wrong time. Some times the rules just get in the way. Much as I'd like the TSA to acknowledge that I don't have the strength to cause any trouble, sealed food containers or no, and bend the rules, It's often enough--in Cancerville--not such a bad idea to bend them one's self. No intelligent person would have done half of what we just did--especially not while dragging me around like Howdy Doody with a broken jaw. There would have been mattresses on every sharp edge, and battening around every assumption and medical advice instead of laughter. 

It just wouldn't have been Midwestern, at all. It simply wouldn't have worked. 

Show me Where it Hurts

I have time, before the next chemo round begins, to obsess a bit upon myself. That's not exactly good.    I don't mean obsess in any kind of fabulous spa talk, spoil the self with rub downs or enrich the same with mud baths, hot springs or champagne mani/pedis. I mean plain 'ole overthink the situation and criss cross the cartoon with direness. 

Right now, my obsession is with pain, or more to the point, being without it. While there are several loci of pain on my body at the moment, the two most active, the Krakatoa and Vesuvius, are the right and left armpits. Admittedly, I can't only think of one other time when my armpit--and it was the right one--hurt--and that was a temporary reaction to some smelly anti-perspirant. Probably something ill advised, from the Eighties, when one was still occasionally tempted to have every body zone smell like a different designer. Pierre Cardin for the pits was not unthinkable. YSL crotch powder was a distinct possibility. Such innocence we had then.

Thus, the fact that they do hurt at first I explained away. On the left side, I have some tumors that have grown, and they are causing obvious problems--the skin is unhappy, they are sensitive, their subcutaneous antics are why this pain exists--and, too, there may still be some lymph nodes in that area (this is where some of the skin for my facial/neck reconstruction came from, and the muscle that they needed was harvested here from my left pectoralis). On the right, I thought it was obvious that the nodes had become inflamed from my general overall difficulties with drainage, overwhelmed perhaps with all they had to carry--that's why it felt like I was smuggling eggs under there. 

My own explanations are artful, logical and--to my mind--as close to simple and as evidentiary-based as I can make them. They are usually wrong, too. 

No, these lumps are cancerous, and were it possible for you to shove a hard-boiled egg under your skin in your pit, it would hurt. I don't know if these are really the size of a hard boiled egg but at least one of them feels like it is so I'll lean on that illustration. 

I am still confused/impressed with how modern medicine deals with pain. Virtually every one of my appointments the last six months have started with "are you in any pain now" and "how much pain are you in" if yes. I remember going to the doctor, again in the Eighties, and starting with the fact that I was in pain--offered as a fact, upfront--because I was. I recall vividly the ligaments I tore in my right knee in 1984 that were grudgingly offered Tylenol with codeine (and don't expect a refill). 

I have consistently not been in pain and even when it's been expected, I haven't been--my doctors have all remarked upon it and I've self-surveyed diligently to see if I'm masking anything and I don't believe I am or have been. I may have a higher tolerance, but I doubt it. I'm a total bitch if I stub my toe and a paper cut threatens to turn me into a goober addict. And, I'm not overly brave about it. I do ask if a particular shot is going to hurt (Procrit shots hurt, btw). 

So the pain mouse came out and the Mark lion jumped. And all I had to do was say the magic words  I'm in pain to get pain med 1.  And all I needed to do for pain med 2 was say that pain med 1 wasn't cutting it. And doubling pain med 2 was accomplished when I noted I was still in pain and pain med 3 was added. I didn't have to document or provide evidence or play act or point to areas on a doll. The 80's it isn't, and that's for certain.

Don't mistake my wonder for complaint--the part of the story that I like best is that my doctors believe me, because I do try to have a very transparent relationship with them. Better still, I do like not suffering, too. Do the pits and their other pain centers make me do so? Decidedly yes, to the point of not sleeping, to the point of nausea, to the point of diffuse concentration.

It has surprised me to be in this situation, and previously, to have not been, within what seems a short space of time. Obviously I'm lacking a good sense of how long something should take before it hurts, but I always believed it required a longer bake. Apparently, like Athena from Zeus' head, it can be sudden and--while artful--gruesome in the short run. 

The elephant that is sitting in the corner of this room is that the pain is here from cancer, and that cancer is causing it, and I have to fight it again so soon. The elephant is colored gray but he has some bright yellow nails....not quite into swinging mode, not quite out of the cowardice mood. The occasional drink from the "I'm dying" pond refreshes the poor chap's drama requirements, I guess, but we hope to bitter the water as quickly as possible. Besides, it's time for the Mark Lion to do a bit more work, much as male lions have been proven by observation to be remarkably lazy in the wild, self-indulgent, and probably as scared of large paw-piercing thorns as any of us. 

Cancer Redux (pour mois, et vous)

Just a briefie (which is a written selfie, I think) to tell you that I'll be opening and drapes and dusting in here a bit to bring you all the news of cancer 2.0. Yes, I'm going back to chemo.

I suspected this a few weeks back. I simply haven't felt right, but I feared that I was heavy-handed in my self-diagnosis--there are other problems to blame that upon. Anemia, to account for my lethargy; lethargy, to account for my insouciance; insouciance, to account for my snarly bitch barely-hidden hate fevers--and so it goes.

But nagging at the back of me was the idea that simply a few cancerous cells escaping into one of thousands of lymph nodules could perpetuate my problems--and that was enough to make me see the odds were never going to be in my favor. I'm blessed/cursed with a powerful and aggressive bit of cancer, too--one that isn't about to give up because our romance version of the life novel tells us it must. It needn't, and doesn't; never good about rules.

In Cancer Reboot, I'm going purely chemo at least until it's proven effective or in need of help. My experience with getting more radiation in 8 weeks than a short order cook gets in a career convinced me that at very least, I've no more body to give the god of  the fry it religion of Anti-Cancerism. I need to regrow or at least patch the holes left by the last burnt rubber rally.

This time, there's a three drug combo, that will involve erbitux and taxol and another whose name I cannot remember. My oncologist thinks it's possible that I'm one of a group of people who find resistance with Cisplatin and heavy radiation. While there's no way to identify us upfront, I do wish they could have. I'd have knit a skullcap with my false hope, which I will apparently need.

Yes, this time, the hair does go. Just in time for solar daze in San Francisco, after a summer that was often, and blessedly to me, overcast. I walked a block the other day in the direct sun without a hat just as a test. I felt like it was true death time on True Blood. My dream of a Hawaii vacation, or Scott's dream of taking me there may have met it's match. Better I might visit Iceland in December, when I can be a shopping maniac skipping through the snowbanks at noon and feel naught but cold.

I'll start this new regimen next week, but in advance of that, I've had to put myself on a pain patch with a supplementary elixir. My first go round was free of actual cancer pain--once they had removed my horribly infected tongue, there wasn't much that actually hurt. This time around, nodules have grown on my chest that ache, tumors have developed in my underarms that burn and arche, my arms hurt, my back is killing me. Sleeping more than 2 hours at a time has been a luxury mostly denied. Waking at 2 for pain medicine is no problem--I'm usually up.

This time, it's definitely going to be different. Thank goodness that I do like challenge and change. Not that any cancer asked....

Things I often think (but rarely admit)

If cancer has done me any favors, it may be the desire to live as I move forward more authentically, more true to the nagging voices I filter out of my mouth as my typically somewhat liberal attitudes get spewed outward, 

I say somewhat because I do have fault lines and notions that are not strictly in line with left of center thinking in 21st century America. I've long questioned why Israel, after capturing land in wars that were not (arguably or not) of its own choosing would have to give back land it won? Applied retroactively it seems the globe would politically look quite different than it does today.

I think welfare is a last resort, not a first--that there are far better solutions for poverty than defining one's deviance from a list of must-haves and then plugging the holes with government cheese. I sincerely doubt that there are many people who are content to receive X dollars and do nothing else, but there are some, and their egregious vulgarity isn't a reason to not have welfare, merely an argument against having it as option one. 

I woke early and sat up this morning between 1:30 and 3:30am, trying to find the best way to expel the phlegm that gets trapped in me with my bad drainage system, my perennially noisome sinuses, and my "princess and the pea" attitude to any sort of minor blockage to my deep, rhythmic breathing that marks the sleep cycle. I think that last part is a holdover from the ravages of childhood asthma, nights spent hunched over a steamer with bowls of Vicks Vapo-rub, wondering if my entire life would be a hell of not breathing and not sleeping. Not really and sometimes, as it turns out. 

I try to make cancer my problem, not Scott's, but that's difficult in a somewhat small apartment in a city famous for cheek to jowl living. Much as I try to shield my crusty Midwestern conservatisms from the far more liberal people I enjoy hanging out with--and it's true: I don't want to hang out with conservatives. I don't like them. They pursue people's weaknesses with a finger pointed outward and an "ah-hah!" on their Scarlet Letter lips. That's not who I want to be.

Nor do I want to spend my time defending my thoughts on topics that aren't really liberal or conservative, but simply how I logically conclude my pondering on particular topics.

If cancer taught me anything beyond a certain hunger for authenticity, it's also interiorized a lot of my communications, and my process of experience. I use to be, like a lot of people I know, ready with the snarky comment on the parade passing before or beside me. Always something to note, always the comment, always the grasping of the bon mot. This is not so easy without a tongue, it's virtually impossible when your face is swollen, and in the absence of a phone or Ipad, it's blissfully impossible to be constantly on one's guard to say the biting thing. 

It's rather a relief to not spend each moment competing for most clever motherfucker in the room, and the silence I'm finding is a higher quality commentary than anything I ever came up with on my own. I know that verbal functionality will return, at least to a level where parenthetical commentary is more possible, and I desperately hope to remember this important lesson.

Much of what I've been thinking about this morning was the silent march of thinking as I read an article in the NY Times today, written by someone about their youth in and the present state of Port Clinton, Ohio--one of several ravaged by change places throughout the Midwest. Detroit-ish, where a social order that wasn't so defined by economic class seemed to advance together more and where ostentation was less celebrated and less objectified. 

In discussing the downward mobility of people who chose blue collar work, who didn't pursue advanced education over the past 50 years, the article raises what are typical points to be made in such circumstances: There is less stability, less cohesion, and less wealth brought forward through generations in such families. 

All of those points are true--but never once in this article, or others I've read of places like Port Clinton, does anyone discuss what consumerism has done to nail poverty firmly to the cross of such lives.

In the days before the ubiquity of cellphones, I'll never forget the day I saw a woman in the parking lot of a Marsh Supermarket, pull out in a 25 year old junker car, cigarette dangling from mouth, exhaust pipe spewing the fumes of burning oil, and a late model Nokia held up to her ear, the mysterious grunts and the incredible noise she much have been sharing in that conversation.

In reading Port Clinton stories, I think of the number of times I've been in line in the same supermarkets behind people wearing clothes I can't afford who paid for their groceries with food stamps. The sunglasses I liked but couldn't buy at $259.00 looking jaunty as I thought they would on their heads.

I think of the fact that too many people who are poor still take cable packages that average $100-$150 a month, and wait in those grocery lines while pecking at smartphones whose data, text and voice packages are similarly priced--and that doesn't always include family plans 

There's an astounding amount of people in such situations who believer that healthcare is a right that need cost them nothing. I believe that everyone should have access to healthcare, but everyone should help pay for it, too. In the six months of my primary cancer treatment, I've laid out at least $6000, and my insurance has laid out way, way more--I was lucky to have that insurance. My sunglass food stamp and smartphone neighbors may be lucky to have Medicaid, but that shouldn't be the answer. 

Anything worth having, is worth paying for--freedom from cancer no less than 2 gbs of data on an Iphone per month. Why is it wrong to insist there is a necessity to pay for both things as one is able? Why, in assessing income, are we not asking for an accounting of how people spend their money? 

If you are able to watch HBO, you are able to pay a monthly premium, though likely the premium will knock HBO out of your life--you will get by. There are still libraries, there are still books, and if you cannot bring yourself to re-engage reading, there are now DVDs galore.

I know that a lot of judgment stews behind what I'm writing, and I own that--but there is a point where suspending one's judgement is like giving up one's soul. Too, judgment to me is the nexus between a viewpoint upon what's right and what's fit and conversely what's not, that should inform the way one lives. 

Easy for me--Scott makes a good living and I squeak by, and his butter hits my bread more often than not. Our lives, pretty thoroughly Middle Class, don't revolve around things. At worse, they are gadget heavy and data enriched to a silly point. Yet, those choices reflect just our dumb priorities--no one is buying our groceries, and his one pair of expensive sunglasses are for the running he does, which helps keep him out of the Inferno depths of the healthcare system. 

I feel for Port Clinton and the population that feels stuck there, much as I feel for myself and the way I'm trying to detach myself from the grip of an unseeable force trying to eat me live. But to tell the truth of Port Clinton, it takes a lot ore than just bemoaning the dearth of factory jobs that spread stability throughout a community. Like cancer, it take a discussion of education, self-sacrifice, choices, and how one decides to live within the means at hand or not. 

Occasionally,during chemo or radiation, I'd encounter another patient who smelled--no, reeked--of cigarette smoke--in fact, more than occasionally. In Port Clinton, how many Iphone 5 screens are glowing at night, in front of reruns of True Blood, in those double-wides?

The Return of PITA

Pain in the ass. Pain. That's how we start August.

Now, let's quickly dispel any concern about magnitude--this is freshmen stuff. Considering the various pains people experience, this is a paper cut. My complaint of it is more of that it's unusual than anything else--in fact from from 18 hour surgery through treatment, I've rarely had any pain medicine and have neither needed nor wanted it. That, I've considered the manner in which luck manifested upon my treatment where it seemed to fail in other ways. I was spared little of what kind of peculiar radiation can bring to one, and though precious little nausea came my way from chemo, a lot of weight loss settled on me and nothing fits after 50 pounds went missing. 

And this is about the chipmunk cheeks, which haven't gone away, down or moved south. They've settled on my face as though it would be natural to strap saddlebags there. Where else, the waist? so much more convenient to have things up! 

It isn't that lymphedema hurts, but it slams my cheeks into the teeth they haven't pulled (I have no lowers, they didn't fabricate those out of the bone they used to rebuild me--lazy, huh?), and it takes a fanciful area of the face, perhaps the only part that could look like ass and makes it look like fat ass. I'm aware of that, painfully. 

At night, as my cheek smashes into the pillow, my goldfish mouth pops open and a snail trail marks where I've been. I sleep on towels the same way a dog does when leakage is feared. I wake with a face stiffened but no less ballooned, and the lips of a dirty cartoon character.

One hospital here in the Bay Area runs a lymphedema rehab clinic, which I'm trying to schedule myself into...the doctors have told me that LE (we'll use that from now on) isn't uncommon--after you rip out the lymph system, there's often no logical place for all this fluid to go--but go it sometime must. Protein-rich and ripe for bacteria, it forms a reservoir of infection, a bacteria pool, and can even turn carcinogenic. And that's just what we need now, more damn cancer. 

LE is often associated with breast cancer, notable also for a large loss of local lymph systems, ripped out by compromise with cancer cells that find it an irresistible pathway to the elsewhere it's always looking to destroy. The new horizon upon which it can wreck its havoc. St. Mary's notes on its website that it uses compression garments and massage among its techniques--and I can see massage, but will I get a compression garment designed for this face? A training bra for the misplaced mounds? Frankly it wouldn't matter. At this point I'd wear a 16th Century poultice if I thought it would help.

At 3:36 this morning, I woke up because backed  up snot entered my sinuses and blocked my breathing--and all the new pressures on my face have made it harder to rid myself of this spew and harder to sleep and harder to want to leave the house. This adds up to nothing good. 

I've been using a tiny bit of morphine elixir that they gave me when i left the hospital to handle this discomfort--akin to deciding that an atomic weapon is the only response to rid one's campsite of mosquitoes. Yet, I have nothing else around that would do much having not needed pain medication and having not saved anything for those amorphous future days when it would needed. 

I have requested some from one of my doctors, but we'll see what they say--I suppose they'll be surprised. They start each visit with the famous "are you in pain" question and routinely, I'm not, often to their utter surprise, but not mine. I've come to depend upon the fact that physical discomfort was off limits to this cancer, my line in the sand. It's been allowed to open fistulas in my neck, turn my blood into colored water, screw with my taste buds, take away my ability to eat, but I did draw the line at pain. 

So just as a reminder, cancer--here's the line. Just cross it bitch and see what happens.   

Post Cancer is a Buzzkill all its own

I have spent the last few weeks in recovery, leaving the hot zone (the still radioactive period of 2 weeks or so after treatment when everything is still glowing from all the zapps and chems), and entering what I now think of as the fitful zone.

Fitful because I still truly don't have a definitive answer as to how I've done--a 45 minute MRI was cut short by me because I can't lie flat for 45 minutes without choking on effluvia that has nowhere to go but my throat, and because the machine I was being assaulted in at UCSF was the loudest, most obnoxious, most ear splitting MRI I've ever encountered. The little ear plug pads they gave me only allowed me to escape with a migraine instead of permanent brain damage.

So I have decided in the interim to just think the best and get on with it--there seems no other logical plan of action. This, though, is hard to do with lymph edema. Yes, on my horizon now is a return to the chipmunk cheeks of lymph fluid trapped in my face and swelling my contours out like I'm mylar and it's gas. So lately I can't speak well, open my mouth wide or pretend that I'm exactly getting better.

Am I sick of this shit? Hell to the yes. Just one linear path from bottom of the barrel to at least mid-barrel would be welcome. But even a swollen up face is not sufficient punishment--I'm anemic too! yes, good lord, yes--in addition to destroying cancer cells they apparently sufficed to render my bone marrow almost useless in making red blood cells. The net effect is that scratching one's butt check is more work than I have energy for in a day.

So, I have had blood transfusions and Procrit shots (those back of the arm shots hurt), and iron supplements and god knows what sort of voodoo to right my ship of state. Has it worked? Well, the day after transfusions I wanted to go jogging, but 4 days after, I thought better of it. One day after Procrit and I wanted to clean the bathroom, but then two days after I couldn't care less...the jury is out.

I spend my time lately with our new dog, Madoc, and with guilt at not walking him enough. In public, when I can't avoid going out, I pass snarky notes on my phone to Scott about the world around me and laugh as much as possible. Oddly, I'm not depressed. Frustrated, definitely. I feel like my face is a mask and any suggestion that I'll return to normal eating or speaking is just some sort of cruel hoax. I still watch food porn on the Food Network and still tear up a little when the ice cream cake commercials come on, but less than before, as they are remoter than ever right now.

I've wondered if I'd continue blogging, and my original intent was not to do so past the end of active treatment--but yesterday after passing a snarky note on my phone to Scott in the grocery store, he suggested I should continue occasionally updating what happens as we move zig zag into the future. Before you ask, the note--and it made him laugh--was about my frustration at being offered food samples in the store--and it involved the word "bitch" and it involved the statement: "does it fucking look like I can eat?"

As far as summation, that's a pretty good one. I have been profoundly changed by what has happened to me, but if you were judging upon action, it might not look so profound. I'm still vulgar, I'm still sarcastic, I'm still me. The change is somewhere on the boundaries between how I dream, how I hope and how I live. The first is bigger, the second is smaller and the third is wiser. Somewhere between them all--and I'm truly betting on it--is a porridge of a consistency, a temperature and (more importantly) edibility--that will render all this finding of it a curiosity of an ill begotten past.

To the end, in the Wasteland

I have been thinking about "The Wasteland" by T.S. Eliott here at the end of my cancer treatment. That sprawling, fatuous, fabulist, tortured masterpiece...something that has never entirely left my mind upon first acquaintance with it. It wedged respect for religion into Symbolist tropes, slammed Modernist poetry with a weight of meaning it was not supposed to acknowledge, buttressed free verse with metrics and metrics with free verse, and above all created the most Eurocentric work of art I can think of, "Roman de la Rose" not excepted.

I first read TW (as we'll call it hence) in high school, but it was my freshmen year at the University of Dallas where it became a part of my weltanschaung--all freshmen were required, at UD, to take Literary Tradition, and the term paper for all Literary Tradition students in Semester 2 were to be topiced upon TW. I ended up writing three term papers--one for myself, and two for hopeless friends whose love of poetry was nil and whose tolerance for peacocking one's classical education even less. To those curious, I made $20 and scored some incredible weed, thank you very much to my poetry-hating pals (and they got A's--I got an A+).

My journey with cancer has reminded me of TW at various times, in various ways. It has allowed me to see with some clarity how inhumanely I've been treated in public places--dismissively because I look odd, with no patience because I am not clear. London, Paris, Vienna--Unreal. Then too, how well--with a furtive smile, or a word of encouragement, like the day the woman next to me on the bus said: I hope you have a good day, as I exited at Mt Zion Hospital.

T.S. thought that April was the cruelest month--all of us have other choices. For me, this year, it was February, when all the weight of diagnosis came down upon me, the roof of my life exposed with rotten support beams. May because I thought treatment would not be over. June because it is, and I've lived a thousand years, and it's only been 4 months.

I've had to face my own shortcomings and decide to overcome them or not--and while, for the most part, I overcame, I've had my moments. Times when I've yelled at Scott for the dumbest thing (or rather, made sounds that sound like yelling), times when I've caught a 5 year old staring at me on the bus and flipped them off. Times when I've felt despair creep up my leg and I made not so much as a flick to brush it off, but welcomed it as valid. Let it rest and feed tick like off my life force for an afternoon to no net positive effect.

I have grown tired of the machines, the drugs, the warnings, the doctors, the nurses, the dos, the don'ts. And they have done nothing but try to help, but the failings of the system are evident quickly to those of use sucked up inside of it. The first, last and least accurate assumption of said system is that I'm nothing but my cancer, thus my entire life is theirs to schedule and inconvenience at will. I needed to fight against that assumption better, and should there be more that comes later, I'm ready to do it. No, I won't come back here after chemo to finish this treatment--chemo is an asskicker. Enough for one day. Call me tomorrow.

Despite a couple of small threats to my existence, the death that has been dancing in my mind has not been mine, but that of other people. My mother's death. My sister's recent death that has not brought me to any tears yet--why? Why can I not disconnect loss from effect and see one as separate from the other? I don't have the answer to that, except to say that study of the entirety of any situation spares one the fulsomeness of the emotion of any one part of it. The suffering my sister went through--so plain to me, and so plainly on view--keeps overriding the sure knowledge that I now have no sister. I cannot be so selfish as to want her here suffering just to spare me that grief.

Likewise, my mother--for whom I had the greatest affection that was loosened in her later years by behavior I now know to have been twisted by cancer--her brain was slowly invaded, and her faculties lessened by it. Her choices became, in the last five years of her life, obtuse to me; her insistence upon the fanatical inclusion of her friend whom I could barely tolerate, a brusque farm woman whose instant familiarity with me was grating and way too personal. I grew up with those people who treated me like their personal punching bag and property because we lived in the same small farm town--as if my life were an ownable sheet of vices that could be criticized at will. I loathed that woman, and her presence with my mother at every possible second of her life in the last few years drove a wedge between us that I regret. That death, that's the one that dances hard.

My father, too--how I'm glad that neither of my parents were here to witness this...I was so relieved when he died. He had sat upon the chest of my life for years, an unsmiling counterpoint to the selfish, irresponsible way I lived--those negatives coming about because I did not like fixing cars with him, being in the same room with him, and did not become a lawyer as it clear I should, to make sufficient money to support my parents in their old age...because why else would parents have gay kids? It's not like we're going to have families of our own to take care of...

In TW, both pre- and post-apocalypse are simultaneous events. In that way, cancer is very like it. I am experiencing, at the end of treatment, the worst side effects I've yet had, and they are projected to continue while I'm still "hot" from treatment, for the next two weeks. After that, they say, healing begins.

Where this mysterious healing goes is uncertain. Whether, after scanning and testing, this will have been judged a success is not known; what to be done if not, unknown, but not unknowable. Different chemos, different radiation patterns...if not intensities, given that I've been doused to the upper extent of rads that one is known to be able to tolerate. I try to force myself to think of it, but Madame Sosotris was correct when she noted that one must be careful these days with prognostication.

I became a better person reading TW, and pondering it, all these years--and finding new meaning in it, and laughing at parts of it I took seriously, and marveling at parts I didn't respect enough before. In another lifetime of work, perhaps four more months, I hope that I will have truly done the same with this experience. That I will have grown to be more compassionate, that I will know when I'm staring at the one person on the bus who least needs it, that I will have returned to some functions more respectful of them and more grateful to have them in my life. Those are the fragments I have shored against my ruin.

The quiet around here lately is indicative of two disparate threads in my cancer treatment.

The first is that I've accumulated fatigue along the way. The loss of 1/4 of my body weight, the weight of radiation and chemo, the trips back and forth on the bus...they add up and I'm tired. Sometimes too tired to eat, sometimes too tired to type, and occasionally too tired to give a shit.

The second is that I'm lapping onto the final countdown of this phase--and when I say "this phase" I mean that I suspect they will be more in the future. On Monday, after radiation, I'll have 7 more to go--which means I'll finish a week from next Wednesday. There will be two more chemo infusions--and after this, we'll start the assessment phase.

Truly I'm hoping for a bit of vacation--a week with no doctor's appointments, and no mandatory bus trips and no concern about the time. I'd like to sleep all day and dream of ice cream cakes, which have been very much on my mind as every ice cream chain is advertising them for Father's Day. Cruelty, thy name is Cold Stone Creamery.

I suppose that assessment will be about as much fun as standing and being measured for a new dress or suit--barometers of wellness placed against the self and the self found wanting. I hope against hope to find that all my pessimism about another phase of treatment is ill founded, that the increase in radiation and the extra dosing in chemo took care of the growths they found the last time they looked.

Cancer astonishes me because it's so...directed. It has one thing to do and it simply goes about it in a flagrantly effective way. Were I to try being so efficient, I would grind to a halt midweek in boredom, having nothing left to do. The idea that growths sprouted even as I was being poisoned and laser beamed half to death gives me a new appreciation, though not respect, for what an errant cell or two can effectuate.

Cancer, too, bores me with its finely honed hattred of health. Aside from this blog, I spend virtually no time either thinking or talking about it. The idea of people sitting around discussing their health conditions is something of a parental flashback to me--I was never so amused as when I listened to my parents talk about their panoply of medical appointments. I swore it would never be that way for me....right.

When I first starting writing this blog, I occasionally blasted the machine of medicine--the great conglomerate that swallows one up and refuses to spit out the bone. It's interesting to re-read that now, as digested as I am into the belly of the beast. The rest of my life is now set with call back appointments and monitoring; I may move categories from patient to survivor, but those categories are self-identified: To the system, I'm now forever a patient, a ticking time bomb of potential re-colonization. Fair game for whatever happens between now and then in the treatment universe.

Perhaps there will be a gene-altering shot that will shut off the valve that makes these zombies--something so elegant, so permanent, that I'll be liberated from the tower and set free. Maybe to eat again, to speak again, to cut an ice cream cake in two and have half for breakfast; after all, I've got 40 pounds of health to regain.

Waiting for Yom

Today, post radiation, is my visit with Dr. Yom, a weekly check in where we tell each other all of our deepest darkest secrets. Mine this week is that I can't wait for treatment to be over, but this is neither dark nor deep between us. Much as I personally love Dr. Yom, having her in my rear view would be wonderful, at least for awhile. 

Our journey together has been fraught with my initial disdain, then lightened with my embrace of, the radiation protocol. The journey has been one filled with victory for the machine: I had to learn to love it. Somehow I truly had it in my mind that I would sit in a comfy chair or lie upon a Carthaginian divan and have at it with highly focused rays beamed into wherever they need, however they wanted and for 15-20 mins. a day. Not terribly inconvenient. 

The truth, so far from fantasy, did shock, and continues to amuse me with its raw indifference to my shattered dreams. Yet I question--why does radiation have to be so uncomfortable? Why, in fact, in this day and age does any treatment not start with ways to comfort the patient? It seems we are the last factor in design--everything going into efficacy, but what is efficacy if you hate delivery? 

Surely there's a way to have an MRI that doesn't squeeze you into a tube. Surely there's a way to sit up for radiation if your mouth, neck and jaw are the targets.

It reminds me too--I'm surrounded by multi-million dollar machines that are keeping people who would not lived previously alive much longer. Why am I still wearing a hospital gown that would look at home in 1950? Why is the patient area so fucking cold when I'm wearing the equivalent of a mini skirt with bad tie closures?

Too, I'm waiting for Dr. Yom today instead of tomorrow which would be our normal day to meet--and today, I'm waiting longer because she is in Tumor Board which she wouldn't have  been tomorrow. Rarely, when I see doctors, does it happen on time. I'm a patient, I'm not patience. I too have things to do. Let's get this corrected. 

I'm ready with all this ammo today--snappy answers and the fact that I lost no weight this week are on my side. Look out, Doc. 

Cleaning to be Clever

It's been days, literally, since I washed or wiped anything in the apartment.

Honestly, I've gone from sitting to getting: up to get something to "eat" (i.e., gross nutrition to slide down my tube), back down to have it. Up to go to bed, down to sleep as much as possible. No dusting, washing, bathroom maintenance, dish washing--you name it.

It just so happens I'm good and organized about these things, and somewhat anal. I don't have to have the house that posses floors clean as santized plates, but I believe in the philosophy that my environment shapes my outlook--and cluttered dirty is infinitely inferior to wiped and organized.

It has been hard--I lose my breath quickly, and probably even more so because I'm so vigilant, expecting to die at any moment. Scott's biking and running partner Terry, a doctor at Kaiser Permanente, assured him that as long as I'm on Lovanox, my risk of the sudden death thing is vastly minimized, and that the discharging residents at the hospital were a bit overzealous in selling the danger I might be in. Fair enough, but it worked. Besides, I had issues already as we've seen...

Saturday, though, it's very pretty in San Francisco--the sky is perfectly clear and blue, though up here near Twin Peaks the wind is very active...the temperature is in the low 70's, and the windows are actually cracked in the apartment--for once, I'm not cold! And having walked into the bathroom I felt the shame of a toilet that might more appropriately be shaved rather than sanitized, soap stains on the sink surround, dishes in the kitchen, granite counter tops that looked pitted, things sitting out.
Oh hell no.

So, I did it. I washed dishes, cleaned the toilet up, wiped the sink and bathtube and briefly considered getting the sweeper out before I decided I needed to catch my breath. This is much better. I've gotten quite good at sitting quietly and amusing myself during periods of fatigue, and I now have limits I'd never have guessed at, but I'm not good at sitting like white in the middle of trash. It simply doesn't suit.

I have been surprised by the amount of muscle this treatment takes--the grinding, daily, non-stop way it fucks with your sense of self, security, happiness, wellness--you can have nothing nor take anything for granted. The doors it opens to other problems--embolisms, for example--are truly cruel sideshows fit for a Nazi circus. To pause is to admit defeat, and I came close to admitting it this week. Fear stalking me, dirt encircling me. Poor Scott, left to do everything, commute and work 70 hours a week had nothing left and no coampassion from me to support his efforts--I saved all of that for myself.

So, head out of the ass and into the toilet. It doesn't sound like it, but it was a step up.

Deep in the Freak

The first time I ever saw the movie "Halloween" I discovered that I could be utterly freaked out.

Michael Myers (or Meyers?) was the protovillian--an entity so completely without feeling, remorse or pity that he effectively was a machine. And that movie played up his almost animal instincts to stand and stare, and yet remain effectively hidden. There are scenes in that movie that still terrify me.

I make a habit, though, of not swimming in the freak pool. I honestly don't find much use to spending my time making myself crazy with what ifs. But today, after my hospital stay, after the embolism was diagnosed, I'm having a hard time not cannonballing over and over in the deep end of freakdom.

I suppose that one problem I have with this is that my mother had a massive pulmonary embolism in the Fifties, before I was born--and the fact that she survived it was considered miraculous, and the fact that she later bore more children was considered stupefyingly ignorant. She was rightly proud of her ability to overcome, and the story of her hospitalization and recovery was something I heard frequently--and like "Halloween" some of it never failed to terrify me.

That's not a lesson for parents in how not to fuck up your kids, by the way--I'm the last person to legitimately offer parenting advice to anyone, considering how any child of mine would emerge. Let's just consider it fortunate that progeny for me will never happen.

I know that a large pulmonary embolism in 2013 is not like one from the 1950's; a lot of things that used to routinely kill us are now quite manageable, given the proper diagnosis and treatment. Heck, the survival rate of most cancers is moving upwards, some types galloping, some types inching, but most are progressing.

However, I can't quite unhook my float from the parade celebrating National Freak Out Day...not quite yet.

I surmise because of this how much I haven't processed of my life in the last 5 months--how much has simply gone by with me marching through the snow of circumstance and facing the howling blizzard of cancer with my head down and gamely moving forward.

I've spent a lot of time doing and not much time thinking--true, occasionally I blow up and yell, and usually at Scott, who is at hand and has to listen to this rant: unfair, incredible, painful, difficult, ridiculous, I don't want to live like this, I don't want to look like this, I don't want to be this thing.

I apologize and get over those things because the truth is I do want to live, I'm not overly concerned with my looks, and I don't think I'm a thing--but I do believe this is unfair and I have never just faced the fact that I believe so, even if there's nothing to be done about it. Yes, it just is.

This embolism? un-fucking-fair. I really have and are continuing to have enough problems. I spit snot out of my mouth because there's nowhere for it go, my skin is burnt where radiation touches me, I wake up 20 times a night, I drool where I never did before, my neck fissures and seeps pus crap at will. People stare at me, gawk, and I can't tell them to put their fucking eyeballs back into their dumb heads.

I never was much of a swimmer, and even though Scorpio is a water sign, I don't really like getting wet. So there has to be other answers for why my breaststroke is so killer in this contained little ocean of freak-me, and maybe I see why I'm here. If recognition is the first step to healing, then hopefully I'll be getting out and drying off soon.

Greetings from the edge of breath

That asthma thing I last wrote of? Turns out it wan't the answer to the problem stalking me. As has proved typical of me during this cancer buzzkill, I do nothing by such dinky half measures. Indeed instead of airway constriction, I decided to go with the far dicier but more glamorous option of a blood clot in my lungs, a pulmonary embolism.

As I'm writing this, I'm in a hospital room at California Pacific Medical Center, looking at the rise of Clay Street as it marches off into the distance. I don't really know what direction I'm looking, but the view is beautiful. At night, I see car lights or tail lights, the lighting of windows, lamps, and the deepening shade around the hill. This morning, the fog as it settled in. 

Hospitals are hospitals. They do the craziest things. Here, I have blood pressure and lab draws at all hours. Midnight, 5am, doesn't matter. If the room is dark, they turn on the lights and ask me if it's ok to come in...of course it's not ok, idiot, but that won't stop you. So why bother asking?

Scott has been commuting to his new job in San Jose and still coming before and after work the past couple of days, and it shows on him...and we both love the new mattress at home, so sleeping on my glorified hard butt cot is not exactly heaven to me. 

How did I end up here? Well, the day after I had my "asthma attack" it was time for chemo, so I sucked it up and had the luxury of Scott driving me early in the morning to the oncologist's office, Dr. Kramer, associated with Cal Pac. 

When I got here, again, so out of breath, I had my blood draw, and they took my weight and vitals, and I waited to see Kristen, the Nurse Practitioner, who reviews how the week has gone with me, and the treatment plan, and how I'm adapting to the side effects. Kristen is always nice and calm, and encouraging....this is always pleasant.

This visit, though, I could see her look slightly--panicked? concerned? of course I was laboring for breath and that's not normal, so any reaction I describe is not our normal outcome. She got the doctor on duty and they decided to send me to the Emergency Room of the hospital attached to the medical services wing.

I don't have to tell any of you that a trip to the ER is pretty much going to be a day long affair until you present with a knife sticking in your back and a simple request to remove it. In my case, with many possible suspects and no bleeding knife, the process of elimination was slow and tedious. From 10am to about 4pm, when the lung CT was read, no one knew it could be pulmonary embolism--but finally, there it was, undeniable, on film.

And not just any embolism they tell me--big, laying itself like a blanket over an artery, claiming lung space and acting as if quite at home. 

This is the story right now--at risk of sudden death, I cannot leave the hospital without a drug that I inject twice a day that my insurance doesn't cover. My insurance doesn't normally cover this drug, so my doctors have to appeal. Their appeal could not be heard because my COBRA election from IU has not been reported, so my insurance believes i'm no longer covered--and if I were them, after everything they've spent the last couple of months, that would be the pause that refreshes. 

So, I'm in stasis at the moment as we work this out--the hospital, the former employer, me, the insurance company, the doctors, the appeals, the process....process! in the meanwhile, I'm watching True Blood on the Ipad familiarizing myself with the Vampire and Supe culture and trying like hell to figure out why everyone in Bon Temps wants to bang Sookie Stackhouse. That could take a million years for me to enculturate...

My vitals are great. I'm well rested. I refuse to get stressed.  If there's indeed a ticking time bomb that has strapped itself into my lungs for a visit, I intend to act with the gravitas of being appropriately threatened by its existence and pull no heroics that alert it to the fact that I'd like to scream and cry and cuss and talk about how unfair this shit is on a continual basis, 

Of course it's unfair. It's cancer. This is the ticket you get for the infraction. Deal with it,

Blue Lungs

It's 5am and I haven't been to sleep.

This started yesterday afternoon, a pretty typical San Francisco day--bit windy, bit chilly on the hill when I left for radiation. I took the elevator down to the lobby and saw the postman--no need to check, and left for the two block walk to the bus station, bus one of two that I take to get to Mt. Zion Hospital and the Helen Diller Family Cancer Center. I haven't bothered to find out if Helen was related to Phyllis, but I think of that every time I see the sign.

About half way to the bus stop I suddenly had...an asthma attack?   It seems that way, but though I'm officially an asthmatic, I equivocate because i haven't had a full on attack for....40 years? maybe a bit more. I've used inhalers, and I've taken special antibiotics for the lungs, occasionally, but more as a precaution, not because i was struggling to breathe. Yet here I was on a sidewalk overlooking Market Street, certain that I couldn't breathe whatsoever. 

I struggled to the bus stop hoping that this was temporary, but it kept going, moderating a bit such that I could get on, and set down and will myself at least slightly calmer. But all I could think of and all I could feel was the fear and anxiety that 6 and 7 year old Mark felt when, like clockwork, I'd spend a cold weekend hunched over a steamer, with Vicks Vap-o-rub smeared all over me, struggling for breath. So frightened that I couldn't begin to speak, so short of breath that I couldn't anyway. 

By the time I got to UCSF, it seemed better, but then I left the bus and pow, again, I couldn't breathe. I reeled into the cancer center, got downstairs to the radiation oncology rooms and called for the nurse. 

Ah, poor Janet--she looked as concerned as I was panicked, and when she hooked me up to the monitor my pulse was racing and jumping and the room sounded like a rave. Then we got Dr. Yom in on the act.

Why did this happen? For me, there used to be triggers that were predictable, and probably still are....though I don't rake and jump in piles of leaves anymore, I remember some dicey moments in Indiana just raking and moving them around. There were gardeners working the stretch of the sidewalk where I was walking, and they may have left, in the air, the infamous hanging chad of vegetation which was cut bad, the added insult of blowers which toss everything into the air just for people like me. 

Or it was the temperature and the wind and the humidity, all hitting the sweet spot that I cannot handle--certainly possible.

Or it's my weakened system fighting all the old boogeymen who come back to haunt when we think we're bravest--that kneecap a man into a child and make him want to cry. 

I'm sitting in a chair upright as possible at 5am, having not slept, with a heating pad on my chest. I don't know if the heat really helps, but I tell myself it does, and that calms me down. I'm still a bit tight, but nothing like the afternoon....at least until I take the heating pad off and move around.

When I was a kid, asthma ate whole weekends, whole evenings and nights, days of school. In the Fifth Grade, my mother took me to a new pediatrician, Dr. Nicodemus, who treated me like I was curiously grown up--he would joke with me, and patted my head--and I thought he was the most incredible doctor I'd ever met. 

He talked my mother into signing me up for band, particularly for a brass instrument. His theory was that the breath control needed to play something like an alto horn, which is what I chose to learn, was correlative to the breath control I needed to learn to short circuit asthma attacks, to calm myself, and bring them quickly under control. 

He brought out a pill that he wanted me to try--he called it a salt and pepper pill, which it resembled--yellowish, with black and white specs in it. He gave me, not my Mother, the pill vial and told me to take  one whenever I felt my chest was tightening, and it would help me avoid an asthma attack.

Finally, he told me to leave school whenever I needed to and come to his office when I felt the attack was on its way. No permissions needed. 

The alto horn worked, the pill was a placebo, and just the thought that I could leave school if I needed was enough to turn the tide. Dr. Nicodemus psyched me out so successfully that from his tenure in my life, to today, I've smoked, and jogged and worked out and always listed myself as an asthmatic with "no problems" on medical forms. Maybe not in the future....

Weakness begets weakness, and right now, I'm weak. I'm incredibly frustrated with the mounting pile of side effects. The unpredictability is wearing at me. The discomfort of not speaking much and not eating is occasionally insufferable. My practical life is subsumed in rituals I have to follow just to function. f am feeling too a rising of anger at this shortness of breath....seeing that it may end with a stupid oxygen tank, even if temporary, another marker of insufficiency. 

Dr. Nicodemus, where the hell are you? At 52, I may need a refresher course. 

Madoc has Two Daddies

Last night, I was up at least once each hour. The problem is that the thick mucous pools in my throat makes me feel like I'm choking, so obviously, it's not easy to sleep. The radiation has pulled my mouth into a knot, my neck looks like I've lost a sword fight, and the too much sun look on my face has turned a more violent red. This, I hope, is nearing the peak of its power over me. 

Today's radiation treatment puts me over the 50% mark toward the end of this treatment phase. With any luck, it's the only phase I'll need, but luck isn't something I'm counting on. Given there are growths to monitor that popped up during this phase, I'm betting on a phase 2 rather than against it. Surely it will be nice to kvell when such a possibility is nixed, if it is, so I'm hedging my reality with hope, as I think I should. 

I finally gave up at 4:30 this morning, after rousing Scott for the umpteenth time and being rewarded with a killer back rub, I stumbled into the living room and grabbed my computer. The pinched mouth of mine and the swollen everything means that my limited conversation skills are worse than they've lately been--it's virtually impossible to tell what I'm saying. So I like to play Civilization V on my laptop as a way to pass time and unwind, with no one to talk to other than the AI players, as I various threaten, cajole, or attack, my way to world domination. 

This morning, though, Scott forwarded the first picture we've received of our new baby, Madoc, the Welsh Terrier, who is just coming up to two weeks old, out in Turlock, CA. The breeder sent litter photos of adorable terrier pups, dark black and rich brown puppy colored, with little gremlin ears. They all look alike. ln adulthood, their black mellows and their brown beiges, but right now, he is the color of ink and chocolate. 

By the end of treatment, Madoc will be just over the horizon from coming home...I'll have a couple of weeks to begin to live beyond radiation and chemo appointments, and look forward to every two hour bathroom runs with this little creature. I'd originally thought it would be good to have a pup to force me up and out when I'm tired, during treatment, but frankly, I'm very glad that's not to be. Cancer is taking so much of my time, my attentive resources, my emotions, that it would be difficult to find the moxie I need to make certain a Welsh Terrier was not using the carpet as ersatz toilet. 

In so many ways, I overestimated myself during this treatment plan. Because I had sailed through surgery, I thought I'd do the same with radiation and with chemo--and to some extent, chemo has been as doable as I thought. It's the intense daily shot of rays that are really the problem. I thought I'd start a new job in SF in spite of the schedule; I thought I'd keep the apartment spotless; I thought I'd cook gourmet as much as I possibly could; I thought I'd take a class. The thought of those thoughts almost makes me laugh, were they not so horrendously outside any concept of reality.

I am so ungodly tired sometimes. There were a couple of days when gesturing was more than I thought I could do. This is a tired that is not from exertion--it is bored into one as surely as a tunnel is created. It comes from chemicals and machines, and has no locus, but spreads throughout the body and indiscriminately destroys whatever it touches. The flexion of muscle is meaningless against it. This is fatigue so powerful that it is its own universe, and its own rules. Sleep doesn't slough it off. It simply is. 

Cast against that reality, again thinking of my mother and sister and everything they did while they went through these treatments, I wonder why I'm so behind-hand, why I cannot be or do everything they did and were--but that's cancer--never the same for anyone. And the fact that I defer the love of a pup until I'm better able to answer it is probably one of the braver and smarter things I've ever done. 

I'm looking forward to the end of the mucous problem, much as I'm looking forward to the point where I jump off the radiation table for the last time, at least in this plan. I see Madoc as a great reward that's to come to me and to Scott, a wonderful cosmic thank you for playing, a prize. Not just a back rub at 4am when I'm sitting on the side of the bed, contemplating what to do--a real, live, reminder that life is for always creating horizons, and events, and always for looking forward to how you make it to them...red faced, swollen, tired, or dark black and rich brown. 

A Fresh Pair of Eyes

Charles has arrived in SF to spend a week here with me and Scott, and we've already had some notable chili and stir fry. His visit gives me the opportunity to re-examine my progress since Indiana, and re-see the city that is now my home. Charles and I last visited a very different San Francisco just after the turn of the millennium, staying in a wonderful gay guest house on Church in the Castro (Parker House, highly recommended), and remembered SF as a place where everyone on the street car was smiling when we got on. 

That would have been one of the antique looking cars, and we caught it by the Twin Peaks Bar, AKA the glass coffin--or AKA the place I threaten to become attached to as a disability bear. A famous institution, apparently one of the first or the first gay bar to have plate glass, see-through, Mama-sure-knows-now windows.

Our Monday was spent driving up the coast, hoping to visit Muir Woods (hint: don't ever try this on a national holiday unless you're there at 6am), but driving by beautiful stands of Redwoods on Highway 1 up to Point Reyes Station, where Charles and Scott had burgers and I watched. This was my first foot into a restaurant since before my surgery--and I have to say that being surrounded by all that food, those wonderful smells and all that chewing was a bit overwhelming. I was glad when it over. 

Today, Charles has followed me through chemo and now, awaiting my time for radiation, I've sent him to have a bit of lunch at My Father's Kitchen, the Vietnamese place that sits high atop my eat-at list when eating is possible. He's to scope it out and assess whether my nose, or eyes or my desires are leading me badly astray. Judging by the crowd there for lunch today, I rather doubt it. I assume his report will be as damn good as it seems to me when I stare down those pho bowls waiting for the bus. 

I'm close to the midpoint of treatment--or the new midpoint, given that we've added a week of radiation and some modifications to chemo. Now, with my radiation burns, weight loss, the skin on my neck fissuring a bit and seeping, i'm no longer such a charming relic of myself, but something quite new indeed. I wear a floppy hat everywhere to avoid sun (enough radiation, thank you), I walk more slowly, I feel my age. 

I don't know how a fresh set of eyes encounters me--Charles is likely too polite to be shocked or too well prepared by Scott to be so. The fact that I am not myself is apparent to me, but how bad is it? Probably far less than I think given that I'm always a high interpreter of low expectations. Things could be worse, as Charles reminded me today, when he mentioned how lucky I am to still have mobility when so many people in treatment have issues with the same.

Of course, he's correct--and instead of wailing about my losses I should at least be equally sanguine about my advantages. I still have my voice, here, if not in my mouth. I still have my appetite, although right now it's not inside me, it's across the street having lunch. I can still walk without help, and will walk further once some of my strength is back--and right now I live in one of the world's most beautiful cities where there are things to walk to, restaurants to wonder at, a beautiful sun to protect myself from, and a place where friends want to visit. Indeed, it could be much, much worse.