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. 

Radio Silence

Quiet--now that's something that has been lacking in my life lately. The whir of radiation machines, the drone of doctors, and speech therapists and dieticians, nurses, stats and orders. So this week I gave myself quiet time from the blog, from the thinking, from the analyzing of what I'm going through--how am I? Well, it's both good and bad...but when isn't cancer a mixed bag?

I found, in my last post, that I managed to make my niece cry. This is not of course what I'm aiming to do, though I'm not certain I can avoid that always. Having just lost her mother, and now having another family member going through something strikingly similar is cruel at best for both of us.

But I don't want to soft pedal anything, so Kathy, I know you won't like some of what you read here, but I'm working hard to be ok...so keep it calm as much as you can.

Today in the shower, while washing my hair, I found my palm full of hair. Apparently, the back of my head is shedding--I looked at my bathrobe and found a collar of grey hair (I'm a blonde/grey guy, after all this significantly more grey). I had an idea that this was happening--the other day, I found a few hairs in the bathtub, and cursing Scott for not cleaning up after himself made no sense--I was pretty certain those hairs weren't there when I started.

So today, I cried. I know, this is not the very worst thing that could happen. There are far worse things than hair that usually grows back...but after 17 radiation sessions and 4 chemos, the fact that it hadn't started gave me hope that it wouldn't--that, after all, there would be one indignity I would be spared. I have to spend my days discussing how many times I eat, crap, how long I sleep, how much mucous is flowing out of me, I thought this was one thing that I wouldn't experience.

It appears that I'm destined to enjoy the full cancer buzzkill.

Now, perhaps that's a good thing. Perhaps I'm not spared any indignity because I'll never pass this way again and the cosmos is slamming the full experience down--the Louvre in a day, if you will (I tried that once--don't). Or maybe it's just the power of what I'm dealing with revealing, again, how big it is and how much bigger I need to be. I'm hoping the former over the latter.

On the positive side, although I look like I have a dog's sunburn on the lower part of my face from radiation, during the daily treatments, I've learned to relax enough that I've started to fall asleep. Midway through, the table adjusts slightly, with two small knocks, three quarters of the way through, the overhead arm of the machine moves far east to far west, as if a full day has passed. I end with arm moving midway back east, directly overhead, making it's peculiar spitting sound in my face, a bit loud at first, and sputtering out, followed by the techs re-entering and lifting the mask off my face.

At chemo, Fred and Dana keep a chatter up at the desk while I play with my Ipad, or read; Fred is more taciturn, Dana is very high touch. I sit there for a few hours, and they warn me when the diruetic is dripped in. You can wait about 5 minutes and then it's time to go--this is not like drinking a cup of coffee. It's purpose is to force my kidneys to flush, and test their efficacy, as Cisplatin is notable for damaging gimpy kidneys. Apparently, mine are fairly powerful. Usually, I go four times after this stuff drips through, and I don't stray far from a john if I can help it the rest of the day.

There is that extra week of radiation, and now the possibility of adding Erbitux at the end of my traditional chemo for an extra boost of awesome--or gross, if you will. Erbitux has a nearly 100% skin rash rate on the people who endure it--but those who endure it tend to live. Dr. Kramer promises he can manage the side effects by dose management. So far, he hasn't lied, so I believe him. I'll deal.

As I'm sitting here now, I've spent the last couple of days expelling huge amounts of mucous, mostly through the tedious and now familiar routine of blowing it all out of my mouth into tissue--boxes, and boxes worth! I do this all day, and wake up several times a night to do it too...the mucous is thick, not at all like having a runny nose, though I have that too from taking thinners that are keeping me from totally choking on this stuff. I wonder if I could dry this stuff out and build a house with it? It sure feels as if it's a precursor to cement.

As with anyday in Cancer town, the news isn't all good or all bad--one step forward, one step sideways, headwinds blowing all the while. Scott was right when he said the other day that this was my full time job--indeed it is. There's no benefits, no vacation, and the boss is an asshole. Seems like the typical American shop, after all.

On the unexpectedness of setbacks

The past week or so, maybe a bit longer, I've been feeling awesome.

Yes, my energy is down, my weight is not gaining, I'm not eating enough--but I feel pretty terrific. I sleep well, I don't wake up feeling like a sick person, I have a sense of humor--just things that I think make life better and more interesting, and less like a continual dirge.

I've been trying to eat more, but frankly, what I eat is bringing me down. You know that already, and all I can try to do to combat this reality is invoke a bit more variety by buying strawberry and chocolate Ensure and Boost, and working those into the waterfall of vanilla Nutren with which I am perpetually bathed. The dietician has approved me to add my beloved chococlate spirutein shakes--but I suspect they'd let me add a gnu if I proved I could grind it finely enough that it wouldn't block the tube.

But there have been other concerns that have popped up, things that Scott and I decided to keep to ourselves until we knew more of them. At my meeting with Dr. Wang, the incredibly late surgeon, I found that a recent MRI had shown new areas of cancer growth in my neck--unexpected nodules of recolonization that appeared where they shouldn't, when they shouldn't, denoting how unusually aggressive this particular cancer of mine truly has been.

This caught my breath, and the fact that I didn't look panicked is only because there was nothing definitive--this was one image from an MRI. No biopsy had confirmed that the nodules were cancernous--for all I know they are cysts, reactions to the rigors of radiation, bumps developing from chemo, markers of bad luck.

Dr. Yom, sad, and hugging me, though, didn't make that assessment any easy to have.

But I decided that I would keep my mouth shut and my head up, and simply continue doing the best I could do with what I have--a sterling attitude, a powerful mind, an ability to see dross for what it is--far more prevalent than gold. The surgeons in Indiana were clear with me that even a radical surgery such as mine provided no more than a 50/50 guarantee of eradication; UCSF has been clear that the amount of surgery I have had limits my options for dealing with reoccurrence significantly. So what I have is me, my determination to survive, my desire to fight, and the help of incredible radiation oncologists and chemo oncologists to get me through it. I frankly like my odds,

So this week, the word is in that our first step will be an extra week of radiation and a shake up of the drugs in my chemo cocktail. Considering that I had virtually no nausea this week, I'm thinking I can deal with the latter, and my new radiation attitude has allowed me to welcome the former with no small bit of ok. My techs and I on Core C get along well--we all know what to expect from one another, and they take care of me when going into my radiative state better than anyone should expect. One more week with them is not a punishment.

So as I am meditating during the radiation, I'm visualizing these 2 centimeter growths getting the bejesus zapped out of their aggressive asses. I'm seeing that if it hurts my skin to take the radiation, it's got to be killing theirs--that if I'm sore, they are dead. The redness of my face is a testament to the burns they are feeling, the fact that my commodious body is not putting up with their bully bullshit much longer.

So now, it's time to seriously try to gain weight--which means I have to stop whining about how horrible Nutren is and just drink it. I have to stop dreaming of cheeseburgers and figure a way for Ensure to taste like one, if only in my mind. I have to be harder, and stronger, as I've suggested I will be, only ramped up higher, more purposed and more focused than before.

I'm shocked at what it takes to win this game--truly, I'm humbled by the tough I need to have and the tough I thought I had and the enormous gulf between those two poles. But I am becoming my sister, and I am becoming my mother, and I'm determined to out do them. They wouldn't mind; they would want it that way.

Zen Yesterday

There it was again.

Some people have a mantra, a string of words carefully chosen, a pet phrase, that they repeat to themselves over and over, inducing either calm or hope or the feeling that one's shrugged indifference is at least the proper response to the vicissitudes of existence. 

I have long eschewed the idea, though I have stock phrases I rely upon just as much as an adherent of TMI or Buddhism reply upon their meditation or prayers--mine are simply more earthy, and utterly predictable as to when I enter the proper state to utter them. 

Lately, though, I surprisingly have found myself repeating a line in my head, almost aloud, in a constant stream, as if my mind, tired of my antics, was forcing upon me a mantra whether I wanted it or not. This first occurred during several of my long waits to see doctors, the phrase would appear, I would see it in my mind and I would hear it. 

It began to occur in radiation therapy, when the mask came down on me, and I was left in the room with the stars and the machine snorts and jolts.

It's a line from "Ash Wednesday" by T.S. Eliot, using 'me' instead of us--a personalization. Another of Eliot's decantations of Eastern Philosophy to Western religion, another in his links of culture to action: "Teach me to care, and not to care; Teach me to sit still..."

it is time for this, for if now if not the time to stop struggling to fix the machine, right the wrongs, crusade amongst the world's populations, I can't think of when will be. I cannot right the world when I am desperately out of balance, when I have come to acknowledge my own weaknesses, and I have come to embrace my own lack of ability to address them. 

I cannot even know the problems of others, the problems of the world--these are merely my perceptions of what they are: I have never sit still. 

There is a great premium we place upon self-industry. The never still-mother, the father who works 80 hours, the children in school and programs and enrichment and clubs. Never beyond the moment of exactitude that such schedules places upon everyone, and everyone else, in their lives. 

I have come to see my daily radiation treatment as a moment that is mine, designed for me, helpful to me. The mask, I have begun to see as a tool to focus me, to force upon a body stupidly casting about for purpose that its purpose is here and now. Mark A. Price: Occupation--healing. Occupation--rebuilding a destroyed self. In the dark room, with the stars above me, with the Sixties and Seventies music they play, with my mantra sliding through left ear, right ear, I'm occasionally transported back to see my sister and brothers when they lived at home, my parents alive, 1964, then '68, then the Seventies, the music pulling me into places as a visitor. Teach me to care. 

For indeed I both need to learn to not care and care. Too simply I tend to hold onto negatives when positives abounded in my life, and continue to do so--and it's no error that I bounce around past decades....the repair that the machine is attempting upon me mirrors a repair I must do upon myself: Teach me not to care. 

To be at peace with my past means I accept that I smoked cigarettes, and ate foods from cans, and tanned. I accept that my family was imperfect, that my choices were as often poor as inspired that they all led to the moment of now when I am. I understand that the choices of others were not my choices, theirs, freely made. The time we spent with one another, or without one another, were conscious, and real and mutual. 

Yesterday, after radiation, we drove to the Golden Gate Bridge and it was beautiful. The sun was pouring down and I didn't have my hat--now necessary for me in sunlight. We didn't stay long. I'm too tired, too often, for beauty, and that's hard to explain--but the more incredible what I'm seeing, the more it takes out of me to see it. I cannot sit still in the face of the Bridge, or the Marin headlands, or the incredible movement of the water beneath the span, the almost river like flow of the ocean water in to Alcatraz. The colors! 

Afterward, we went to Whole Foods, to have our first experience being what I call "whole foods assholes", people who drive their cars to a crowded small parking lot and block the street for whatever time it takes them to get a spot in the lot. Doesn't matter. Bus needs to get through? tough. Fire/Emergency? the emergency here is that I need arugula and I can't park this car to get it.

Nothing terrible to report, we got right in. Which come to think of it was really what I wanted after all. Zen yesterday wasn't supportive of that sort of attitude, or the stillness of the engine it so often implies. 

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.