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.