Frisch Weht Der Wind

Last night, as I went to bed, the wind whipped around this corner near Twin Peaks ferociously, out of nowhere, and we headed into the second hour of it. 

Of course, with the Pacific Ocean a few miles to the West, one knows where it comes from--the landing of a cloud bank on a bridge, the arrival from far off ports of a ship that brought thunder as its gift, the simple act of movement on a never-still planet. As an Indiana native, the change of weather doesn't shock me, it's how it changes here that does. I awake one morning to a calm pleasant so nice I can barely want a jacket, and the next to a grey down color determined to wring the last bit of warmth from my body.

That is something I love here, not easily replaceable elsewhere. There are 17 seasons in San Francisco, all going on at the same time, in different places and in small corners. If you could tune to a camera to show you all streets on a sunny day, you'd be shocked to see on some that we wear sweaters and on others we carry cold drinks. 

The virtue of flexibility has never been more necessary in my life and never have I welcomed the certain lack of hard coding I have toward the bends more. As I've aged, my patient quotient has increased dramatically, my demeanor keys have mellowed out and I make, overall, better music in bad situations than ever before. This I find particularly helpful in doctor's offices.

I met my new surgeon/case manager doctor yesterday--Dr. Wang. A tall, angular fellow with a studiously calming voice, I instantly tagged him a better choice for me than the breezy neo-dude who could barely acknowledge my existence. This attitude adjustment is good considering our appointment started 45 minutes late, due to no fault of mine. 

I have the dreaded Midwestern expectation of punctuality, particularly of myself. If you want to see me panic, let me delayed from reached a specific point fifteen minutes prior to the specific time I promised to be there. I do not use the word promise lightly; to me promise and appointment are interchangeable terms. 

Medicine, full of exactitudes based upon inexactitudes, cannot be run thus. I know it, you know it. Some patients cry and need a shoulder, some arrive a la point and instantly gum up progress. Others barely acknowledge a clock has any business with their arrival and departure and won't be dictated to by the petty districts marked on a clock. Those people, with whom I populate a relatively burdened system, I genially despise. 

As to content, once we got going, there was every proof that Dr. Wang was a good choice in that he made no bones about his lack of familiarity with my entire chart, and the fact that I am a late addition to his working life. I'd much rather know this straight off, and from what other doctors have told me, this is typical of a surgeon who did not perform one's primary surgery. What Dr. Wang is being asked to do is answer for another person's work--thankless in any condition. So the fact that we start from mutual understanding is excellent. Now, I simply want his schedule to work better.

That, of course, is a lot like wanting the wind to go away. 

I happen to be up at 3:36am, and that's an oddity of late, nights being generally very good to me, and sleep being very easy. I've felt so normal for a few days that it jars me to find people staring at me on the bus, because it simply seems so unnecessary--why me? Then of course it floods back--the misshapen face, the trach tube, the strange bit of mechanism that hangs beneath my shirt in front from the G tube feed. 

I was in a contemplative mood when the 4 year olds' eyes bored into me, and then irritated, and then recalling myself at 4 and the fascination I felt with other people. The 70-something man with the gut, however, I wanted to punch. At that point in life, there should be no lesson left to teach other than thankfulness and reminding someone at that age to look away when I notice that you've been eye raping my oddities for a full five minutes is almost unnecessary social manners conditioning. That merits a "please, bitch."

Had I not been about to disembark the bus, wanting to be ready to spring up at the first moment as to punctually do so, I was wondering if I should say something to him--the problem, though, is that my speech only confirms my difference right now. All those wonderfully witty things I thought to say--do you need me to remove my clothing for closer inspection, Sir? Would you like to view a note from my doctor?--would sound so much like Donald Duck on valium that it would entertain and divert far more than instruct. Damn this tongue loss. 

Ultimately, like the wind, he manifested and left, and while rogues never wander far in San Francisco, there's no guarantee we'll meet again soon. Better that we don't. As I advance ever upward in re-attaining my ability to blend in a crowd, we may find each other again in a queue that requires grace to bear. My guess is I'll survive it better than him. 

A short break, some short thinking

I've given myself a few days to digest what I've written, how I've thought, and where I'm going with it all. In order, I like what I've written, I'm adjusting how I think, and still have no idea where I'm going. 

There are vague landscapes in which I see myself ending up, all of which involve food, recently, more than anything else. I've been in a pattern of losing weight and no one is terribly happy about it. The nutritionist, the oncologist, the radiation oncologist, the speech therapist--all of them end their chats with me on the note of gaining weight, eating more, taking more in. I agree! The problem is that I've come to hate the Nutren supplement, don't really love Ensure any more than that, want a peanut butter sandwich more than anything else and am fighting nausea to boot. 

This is chemo day, and at noon, I've yet to eat and I'm not terribly unhappy about that-- I'm certain that my team would be...but it just happened. I have it with me, I'll get to it, but I'm kind of filling up on fluids, fluids, fluids. I'm working on other ideas of things to mash and send down the tube, and even toying with baby food (can I do that? it looks so gross), weight gain shakes and dreaming. 

Image has popped up a lot to me these past few days as a topic, too--another vague landscape in which I still imagine myself as I was in preference to seeing how I am. I can, of course, stand in front of a mirror and see what has happened--quite easily, scar marks, nipple in wrong position, jaw still fat with swelling. I think of this vision in reference to what I've always seen of cancer on television--inevitably a woman, wearing a headscarf, being both terribly upset and terribly brave. Able to speak eloquently, eat, and function as any human would, just with the burden of a killer sitting upon her breasts, or ovaries, or--if it's man--his lungs.

No one should expect any reality from television--this after all is a medium filled with black men and women who act like it's the 1940's, gay people who are court jesters, women who are sarcastic and loveless, hispanics who clean. Cancer patients who are brave, looking unceasingly into the bleak future they are destined to inhabit....

Part of my recent digestion has been to fill that future with pictures I'd rather see--me with a five pound weight doing curls, me with a ten pound weight during curls, me with a fifteen pound weight doing curls...me, in my smart new lime green jacket that Scott bought for me in Switzerland having a jog to the Farmer's Market at the Embarcadero. The other day, walking downtown to do some shopping, Scott mentioned how well I was walking--indeed, they can remove a bone from your leg and you can, eventually, forget that they've done so. 

I miss the spontaneity of parenthetical remarks, observations upon the passing scene, catty commentary on what someone is wearing. Lately, I've been particularly catty about a commercial in which women are dancing, doing the twist over the fact that their vaginas aren't leaking all over the place because of a pad, at least I think that's what it is. This commercial has fascinated me because the white woman in it is gracefully swaying around, but they make the two black women break out the Zulu stomp over their leakless grace. Like those brave, upset cancer patients, these women are dancing in the mold that just won't break. 

I am in the midst of breaking some of these molds--the first? Cancer blogger who is only upbeat. I like to be real, just not television style. 

SF, 3AM

At 3am, there was fog everywhere and on the hillside facing the city, perpendicular to the kitchen window, there were squares of light here and there--like Rilke's wiesse elephants. It was peaceful, and still, and I stood there dripping a mucous-thinning agent into my tube, flushing it with this wonderfully cold fresh water from a Brita Pitcher. They were the innovations I requested of Scott when the doctors told me, separately and severely, that during chemo/radiation it would be impossible for me to drink too much water. Those Brita pitchers are the reason I always pee in the middle of the night, often coming to this window to see how much fog and light there is to see.

I would go out on the roof and look to the right to see Market Street go so unstraight through it, lined with green in the daylight, and belted with blurs of regular streetlights on a drunk march to the cluster of skyscrapers downtown, the Bay Bridge at the right arching left, somewhere down there the Embarcadero, the place I think of as one of several hearts this animal city has, and beyond, the Bay that yesterday I saw from the top of a hill as the 24 Divisadero Bus threaded through a hill spine on its way from Cal Pacific to UCSF, at least to me. A massive cloud ombred grey to the darkest bottom layer sat over it while I took my jacket off in sunshine. The water grey green blue at the same time, a color confusion so delightful that I wished I was capable of a second's photography.

When I got off the bus at Sutter, yes, in front of My Father's Kitchen: Vietnamese Comfort Food, where it was hot on the hill of Pacific Heights just a mile up here a breeze had a cool top to it, pulling the food smell out of that wonderful goal restaurant, pushing it into my face. I barely noticed because it was time for radiation, or rather it wasn't--I was an hour early. Not an exact match between chemo and radiation on combo days, so I went over to the clinic to try to reschedule an appointment.

It was chaos there, but with one receptionist on duty, a small office, and 6 people waiting and the endless phone lines ringing, Diana was pulling triple duty. The office was filled with waiting people, none of whom looked particularly like head and neck cancer patients--and most weren't. Most were someone's Scott; a child stared at me because I definitely was the Sesame Street Get--the thing that belonged there. Another child with a mother in studied bohemian chic (that cost about what my Ipad cost) sat inert in jeweled flip flops watching a video that baby talked her into a princess coma. I get why parents buy electronics, and why I should invest in any tablet maker.

After blowing almost 20 minutes trying to tell Diana why I was there when I needn't be, I wandered over to radiation to check in early. I went to the refrigerator room where we change to gowns (for me, just a switch of my shirt to a hospital gown), only to be summoned as I locked up my Ipad and backpack for an early start at radiation. A patient didn't show up and this was the happiest the tech has ever been to see me.

I looked up at the curious ceiling dotted with what I think are stars and ponder the fact that this room while not ugly is so uncomfortable, or perhaps that's just me. The machine occasionally makes spitting sounds with air, its pneumatics? its commentary on the mind it's reading? It could easily be either. I make a mental note to bring the techs cupcakes one day just for the hell of it. I like them and of all people, they've had to hear me bitch more than any of their colleagues. I make a mental note that I want a cupcake so bad I'd be willing to be seriously dirty to get it.

After radiation, I go back out to the restaurant front to await the 24 back to the Castro, and I try not to stare at people eating there. One more mental note: rude!

The 24 in the afternoon is busy, and when schools let out along this corridor of the city, a lot of kids pile in, sometimes the bus is incredibly crowded, and yet I have never seen someone fail to move from the front seats for a senior citizen, or make whatever adjustments are necessary for wheelchairs and baby strollers, and I have never failed to note that Muni drivers will call people out for not moving with alacrity at the approach of a person with a cane. You will not play that on Muni.

This fact set is a source of joy to me here. San Francisco is not physically large, but it is chock-a-block with people in the space it has, and San Franciscans are so often gracious in sharing that space, and making room, that I am awed. I think of the slouching subway louts in NYC, staring bald-faced at a pregnant woman in her third trimester after a day's work while they spread their legs out and scratch the proof that there is no god. Much as I love NYC, it suffers its lack of humanity.

It is always warmer in the Castro, and there are always more people, and it is more colorful. I walk from the 24 stop at 17th and Market to the 33 stop at 18th and Market because it's fun to walk down this block. Across the street is the Castro Theatre, the marquee that I love to see from the apartment deck, bold and colorful and, dare I say, gay. I love the fact that the raw majority of people I pass in this block walk are gay. That I walk by a skank bar at the top of afternoon happy hour, and the Twin Peaks, where the disability bears are sunning in the plate glass windows. I walk by a deli, an Italian deli, a clutch of restaurants, a place to buy clothing that features in its windows the types of t-shirts one would buy only if they were visiting San Francisco.

Today I plan to buy Scott's dinner but only if the Muni is "x" number of minutes away. The 33 is a bus I don't want to miss--this transfer carts me up the hillside from Eureka Valley to the tier of Market where we live, and I don't want to walk it lately. Checking the bus shelter, the bus comes in two minutes--no time. I wait a moment, checking my jacket to see if it has my keys. It does, thank god.

At 3am in fog, when sleep is wonderful, I cannot sleep. There is no reason. No one reason. Maybe it was the nasturtiums on twining over the fence by the sidewalk on my way home--so incredibly orange and yellow. Maybe the phlegm moving like a stalker, playing hide and seek with me, emerging without warning and demanding egress. Maybe the buzz of the machine, delivering humidity to my trach, maybe the fact that I was happy this evening, as vivid as those nasturtiums, if not so obvious. Maybe it was the fact that I have this window, at this hour, with this view, in this city, its squares of light so peculiar that I believe I'm seeing something entirely new.

Do it Better The Next Time

As famously proven by Columbus among millions of others, sometimes you just can't comprehend everything on impact. 

I'm having the side effects in the first week of treatment that most people don't experience until their 4th or 5th week of treatment. I'm feeling those effects with all the whoosh and fuss of a new drinker taking their first shot of harsh whisky. It does suck, and it strikes me as massively unfair, but there it is. This is how it's going to be. 

In my last post, I have to admit to feeling as if I was being defeated quickly by those things. Mucous, so thick that Buckminster Fuller might have coveted it, produced by a guy struggling to breathe. Stomach roilings when I'm struggling to stay above 140. Indeed it's not fair. Cancer, however, would really like me to think that way, because the more I pout about the relative fair or unfair of it, the less work it has to do to defeat me. 

I received two of the least expected and yet most effective shots in the arm that I could receive this week. Of course Scott came home from Europe and that was wonderful, and needed. There was a part of me that instantly happier and more at home, and importantly, calmer. 

But my shots came from two doctors, as different as could be from one another. One, my radiation oncologist is Dr. Yom. She's about 4'8? Hard to judge, but she's short--however, such is merely a physical reality. This has no bearing upon the authority with which she carries herself, which is definitely NBA style height. 

Dr. Yom and I had a confab after my return to radiation yesterday, and her concern about me, and determination for me, were things to behold. I'm not certain I'm used to that from much of anyone, let alone a radiation oncologist with a literature Ph.D., a woman whose reputation for incisiveness is on a par with her reputation for blunt and forthright. And there she was, sitting on a stool, looking at me with a bad of sadness, and telling me how much she wants me to succeed, to go forward with treatment as she had planned, and how few options she thought I might have to do otherwise--but as a person, as a fellow traveler, someone I like. 

As I'm writing this, I'm at my weekly chemo session with the folks at Dr. Kramer's office, sitting in a lazy boy style chair, looking out at the sun hitting the hillsides of lower Pacific Heights. Before infusion started today, I had my follow up with Dr. Kramer, who came into the exam room with the apprehensive aspect that a well-trained dog might have who nonetheless stole dinner from the table. Inevitable punishment seems certain....

Dr. Kramer was afraid that i'd want to dial back my Cisplatin regimen, which he felt would be decisively unwise...and the idea that I might wish to seemed to oppress him. 

I suppose the two of them don't know that I'd pretty much rather cut off my right arm than stop this treatment, aware as I am of what position I'm in, and where things stand, but more importantly--that's it's being supervised by two people that I respect so much. 

So, I told Dr. Kramer my honest assessment of the situation: I fucked up. Simple as that. I've spent my life just sailing through things by force of will. Bad news? fuck it. Adverse situation? Too damn bad. Depression? Get over it. You get the picture.

But now I've met something for which that devil-may-care attitude simply won't work. So I'd like to introduce you to a new reality, which I'm meeting myself.

Hi. I'm Mark A. Price. I'm 52 years old, and I'll be 53 this November. I was misdiagnosed by my doctors and treated incorrectly for what turned out to be tongue cancer. I have an aggressive and nasty type of that cancer that is fast growing and ruthless. To defeat it, my first act was an 18 hour surgery. I presently can't eat food or speak normally, and I don't look exactly normal as a result of that surgery. The surgery was radical, and likely, final--given the amount of reconstruction, it's unlikely I can have other surgeries to resolve any future problems I may have with cancer in this area. 

The surgery I had, too, was difficult, physically and emotionally. The functions I've lost are difficult to lose, physically and emotionally. l was fortunate to come through that surgery with relatively minor complications to date, and to recover from it quickly. 

What I'm doing now is a fight for the very best life I can have, and it comes with consequences. It comes with nausea, it comes with mucous (so much I can't believe it). Nothing about it is easy, simple or fast. I need to gut check every day, and several times a day...not because I'm so tough, but because cancer is...to think any less of it is to be stupid about lt.

So this is the basis of how I'll go forward--recognition and caution, a balance of acknowledgement and head-down hard work. l'll be proactive, and include more prophylaxis to thin out mucous, I'll pay carefully attention to dosing with anti-nausea medications. And more than that, I'll seek out whatever moment of the day I might be able to eat a bit more, so that I won't weigh less.

Why? Dr. Yom sitting forlornly on an exam stool, Dr. Kramer on a matching one, across town a day later. Two people who don't have to care so much but do. It's the least I can do. If it's been awhile since you've felt that your doctor cares about you, I have to tell you it feels good. Just don't follow me here to find it. 

Between Fear and Panic

I understand how people can, in difficult situations, turn to extreme thoughts or solutions to break out of their quandries. I am, it seems, no different than anyone in this regard.

On Wednesday, I started having trouble breathing, my throat closing, the mucous river I live with pooling and going nowhere...not down, not out. My face puffed, my skin reddened further, and I thought first of Cisplatin, the chemo drug, the crap that was forcing me to eat anti-nausea medicine the way I'd like to eat candy: copiously, often.

But the oncologist noted that was I was experiencing were side effects associated with radiation--not chemo, and while Cisplatin might be bad enough, it's effects were more stomach than airway.

I thought of this--all of the things that they said would happen to me eventually during radiation were happening already by treatment 2--and not gradually, but slammiong me, frightening me, making it difficult for me to breathe, a couple of times convincing me I would pass out until I got ahold of myself, counted slowly, focused, refused to give up.

I spent most of the last two days in silence, working on breathing, canceling radiation treatments, hiding. To say that I'm scared of what happened is mild--to say that it depresses me is a joke. It does more than that: it makes me wonder if I can stand the cure.

The first night, I had no sleep, there was no position, there was just walking, bad television in the early hours, old videos, reading, anything that would help me not think of choking. Every five minutes, I'd suction a tiny bit of gunk out, try not to hurl--because the kicker was that even if I couldn't breathe, there was no way my stomach would stop doing cartwheels.

Last night, it was better finally, and I slept--though likely not enough to make up for Wednesday and Thursday, lost days that just circled a dirty drain.

I suppose I did know that this would be difficult--or did I? Maybe not. I think I've had this vision of myself like the Kool Aid pitcher just breaking through walls. That force of personality would overcome force of nature, and prevail because I have to do so.

But I see that I have to gut check each moment and regret any that I fail to fight for--and I have to see as a weakness any optimism that doesn't equally take into account the reality of what I'm doing here.

I received a sympathy card from Scott's sister concerning Barb's death--it was a lovely gesture. And it's hard to receive such a heartfelt note and figure out a way to say back to her that Barb escaped this--this constant battle, this need to put the body under waterfalls of poison and beams of harshness, burns and choking. That, ulimately, having fought long and hard, my sister deserved to stop suffering more than she needed to keep living.

It struck me in the past couple of days where it has not before that cancer may take me like that too. I'm not worse for the reality but I'm not better, either. I have to process something that has muscled its way into my mind but is content to lurk off to the side--fear. I know it's there, and the next time they mask me and pin me and point the killer machine at me, it'll tap dance through my head, daring me to try to breathe logically.

Sometimes fear is rational, and right now, sanely, I am scared.

Exceptionalism

I am completely used to being the patient that doesn't fulfill poor expectations. I like being the guy with too much energy after surgery or who can suck down the semi-poisonous pills with aplomb.

Yet, today, I must admit I may have encountered defeat: Cisplatin. Yes, yesterday's application of chemo might be the reason that today I can't breathe and can't eat...I may be one of the few who instantly react, and badly, to this particular chemo regimen. Normally, they claim this happens a week or two out. Well, not always.

i spend last night sitting upward, trying to clear my throat, feeling my stomach flop and having the hiccups about 20 times. Suctioning, placing humidity on my trach tube, very relaxing evening.

What will happen next? At this point, I don't know. It's a bit earlier and I'm making the rounds (as I can) of telling my doctors that something is not working. Medicine is not exact, though often enough reproducible, to invoke scientific method.

There are outliers, though, and those who react in ways that were clearly not foreseen when the treatment started. Today, I'm that guy. And I guess I'll need to find out later how to fix it.

Close Your Eyes and Think of England

Day one of chemo and radiation both successfully finished yesterday, and they were as you might suspect: in order, borning and horrifying.

Chemo--well, that's a long process of doing nothing while hooked up to an IV. There was a last minute scuffle at the infusion room because one of the component drugs they were considering using for me is in nationwide shortage. This took some discussion and thought and a few phone calls out to resolve. I had settled into my Lazy Boy with my electronics arrayed around me and a book.

The chair, I was delighted to find, had heat--but no massage action. That would seem to be great enhancement when you're confined to it for hours at a time--but in fact, confined is not the right word. Part of chemo, at least for me, is a powerful diuretic that doesn't simply encourage, but demands, that one use the bathroom at regular intervals. Four times in 5 hours for me, and they seemed to be happy with my urges.

It's not difficult to appreciate the toxicity of what is being placed within the body, but it's not apparent to the naked eye. There are innocuous and relatively small bags of stuff they were hanging from my IV tree--along with the great ubiquitous saline bag. Everything was see through, clear liquid in clear plastic...nothing to hide.

Because of the kerfluffle over the missing component drug and the last minute replacement, it was decided to reduce the cisplatin dose per application, and make the applications weekly, instead of tri-weekly. Functionally, I think this may turn out to be a good thing--I'm only guessing but some of the weirdness I feel this morning may--and I just say may--be a result of chemo, or my reaction to a lack of reaction, or just plain anxiety finally rearing its head after meeting the enemy so long awaiting it.

And radiation--I've explained that enough and probably clearly so, that no surprise awaits you there.  Today I go at 2 for the next application and already don't want to go. This is the Think of England moment. For this, I have to simply resign myself, as my techs are seemingly resigned, to hear of how much it's hated. They did play 60's soul and R&B to start, which is the hardest music on the planet to dislike, but then Carole King, and then the Carpenters! Why on Earth is "Rainy Days and Mondays" the soundtrack to this indignity? "Hanging around, nothing to do but frown...." seems a description of what I'm going through, a validation of what I'm feeling.

I used to do a very passable imitation of Marlene Dietrich singing that song and I'll perhaps need to dust it off and convince my radiators to crack a smile. While perfectly pleasant, they are chained to a production schedule that does not allow much leeway. Like me, most patients have a series of these treatments to get through, for which the machine is calibrated and pre-programmed, and to miss your time in line is to force a huge amount of recalculation on the spot. At least for the system that has one's settings, but still--it's ointment meeting fly.

Where the radiation facility is cold (literally) and technical-looking, the infusion room is cluttered and relatively small. Where the radiological techs are schedule driven, the two nurses in infusion, Fred and Dana, are personable but no less pressed. I tend to like to, whenever possible, minimize clutter, so I tried not to focus too much on the overly used bulletin boards, the stacks of magazines, or the dreamcatchers hanging from the ceiling tile. I understand the intent, but this doesn't evoke warmth to me, or the hugging environment of my grandmother's crowded kitchen. The only grandmother I knew was a chain smoking harridan who couldn't be bothered to cook a thing and whose main complaint in life was when anyone--ANYONE--touched her stash of ginger snap cookies that she dunked in her bottomless coffee cup. The only crowd in her kitch was on canasta night, when a group of ladies would get together in dresses that buttoned up the front to make small wagers and drink Pabst.

Today begins the process of separating out the event line I passed yesterday and the way I feel today--and frankly, today I'm nervous like a cat in a room full of rockers...it's hard to get comfortable, the antsyness is consuming some of the productivity I'd like to possess. Is that Cisplatin knocking at my door? Or is it the weird sleep pattern I've been in where I sleep 3 or 4 hours and then get up hourly to suction my throat or pee, or drink water? I don't know what comes from what...

All I know is it's underway, this, and with the steady clunk clunk clunk the roller coster is heading for hill one. Usually a warm up, not a complete shock, a pinch to the system before the upside down or the belly roll.