Concatenating 2014: Astrology! Mindfulness! Lourdes!

What did I learn this year? or what didn't I learn? 

I learned once again that I'm like the Love Canal for toxicity. If you have a chemo drug you need to dump in a guy who won't automatically glow, I'm your man. I've now been at this chemo stuff for over a year and a half and the only problem I've really had is that I once had trouble breathing during a taxol infusion--allergic reaction, I think. They just slowed the drip down and I got over it. Case closed.

My newer drug, 5FU (5 times Fuck You), has a possible side effect of something called hand and foot syndrome, where the skin cracks, and it can cause nails to become brittle--and both of these have now happened to me--in fact, typing is somewhat painful because I have fissures in my nail beds that are annoying and prone to infection. My nails are breaking up into pieces, somewhat abstracted by my habit of picking at them. I was a nail biter all my life, and when nail biting was taken away from me, I turned into a nail picker. I am, after all, not a new Mark but a McGuyvered version of the old model. 

As I look at what I wrote about this year, I learned about the importance of other people in my life, how much deflection they provide me, how much love, the type of support they give that I cannot replicate. I learned how fortunate I am in the people I have around me, closely, or distantly orbiting. I have an interesting family that finds me interesting. I learned that I'm not really all that needy, but I need them, and I need the friends I have, and I need to hear their voices occasionally, on Facebook, as I read what they write in the voice I know of them. In person, as this past weekend when Jerry the Doll came calling, and spent time glorying in the idea that we are survivors. 

I have, too, a bro-crush, a admiration so absolute that it remains a pillar of my existence--my old India Studies boss, Dr. Sumit Ganguly. I know so few people that I believe are geniuses--actually, do I know any others? Some very close...perhaps just Katy Borner at the Cyberinfrastructure for Network Science Center....anyway, Dr. G., as I call him, is my completely nonsexual brain crush. Recently, he's had a serious health challenge of his own and I've been trying to get him to talk to me about it--and he defers on the basis that I'm dealing with enough of my own. Arrgh! I cannot get him to understand that focusing outside myself is what I most want to do. I can't change his diagnosis or prognosis, but I can offer a lot of perspective on dealing with the healthcare system, on how the mind twists to escape the illness the body presents it, how to stay yourself when nobody thinks you can do that anymore.

I recently saw a segment on 60 minutes with Anderson Cooper exploring mindfulness and going on a retreat and walking around deliberately and chewing in silence and what not. That's mindfulness? You see, to me, mindfulness is what I'm trying to do with Dr. G., what I encourage myself to do with all my friends--mindfulness is living the experience of others, understanding through their perspective, melding that with your own to learn of a new way of viewing, thinking, feeling. Mindfulness is not how I am to me, it's how you are. I suppose I learned in 2014 that all my life I've tried to do this--and that's one of the best parts of me that I'm glad is still here. It's not empathy I'm speaking of, but a real effort to retrain one's thinking to enculturate another perspective, and to then feel and think from that new geography. I understand what Anderson's mindfulness was trying to achieve, but to me, it's just stealth narcissism--and don't we have enough of self fascination? 

I'm perfectly ok with myself, and these days I only occasionally have moments of depression over how much cancer has changed me--yeah, it changed me, boo hoo. I'm not cute anymore, if I was cute before--my body is a map of big surgery and subsequent adjustments. My skin is dry and thin, my ass (what's left of it) hangs and isn't pert. But damn if I'm not sexy beautiful in my own head--a man who works for his good, fights, thinks, advocates, loves and occasionally stoops to charm. 

I learned this year to have a different sort of respect for belief and what power that represents. The parishioners of Charles' Catholic parish have been unfailingly lovely about my illness--they pray for me, they send me blessed oil and blessed water--and I drink the water and apply the oil, because I've learned that just as I have agency, so too do they, Belief, for them, is an act of sincerity, not attrition, not a lowest common denominator way to hate others, but a level playing field upon which to love, and even to heal. I've had my problems with Christianity, and with some of the cultists and Dominionists, I still do--but I've come to see the fact that others believe as a positive force. 

I thought of this the other night when I watched a PBS show about wounded soliders congregating yearly at Lourdes, men and women with horrific injuries and even worse memories, seeking not a cure but a healing, not absolution, but a cessation of the worst after effects of bombs and suicide bombers and IEDs. It was moving, it was a profound statement to me of the mind's power to effectuate a better life, and belief's powers to move the unmovable. So if I am less overtly anti-Christian, consider the lessons of 2014 well learned. 

I stopped reading horoscopes for the most part in 2014--I used to read them fairly regularly, and while I didn't think they predicted my life, I did sometimes hope they did when they seemed more interesting than my existence merited. I do still receive a weekly horoscope and newsletter from Rob Brezsny's Free Will Astrology which I enjoy because his writing is so intelligent and entertaining. But this week's offering also was one that spoke directly to me:

SCORPIO (Oct. 23-Nov. 21): You may already know what I'm about to tell 
you. It's a core principle at the root of your Scorpio heritage. But I want 
to focus your attention on it. In the coming months, you'll be wise to 
keep it at the forefront of your conscious awareness. Here it is, courtesy 
of philosopher Friedrich Nietzsche: "You have it in your power to invest 
everything you have lived through -- your experiments, false starts, 
errors, delusions, passions, your love and your hope -- into your goal, with 
nothing left over."

That was 2104 to me--a time when I committed everything and thought always of my goal--to live, to

live gloriously and fully, mindfully, with belief.  In 2014, I started telling people, more people 

at least, the truth I see, and how I see it, and why I see it that way. I used to fear that my

 perspective was too off-putting, now I see how harmless I've been all along. I was rarely

 out to hurt anyone, I rarely felt threatened, and 2014 was the year I decided I could be me,

 because I don't have enough time to be anyone else. 

I don't particularly need mindfulness or Jesus or Buddha, Mohammad or whoever, and I

 don't need to know when Pluto is transiting an impatient Mars. I need to know when Charles is

 coming home, so I can open the garage door. I need to know that Rally gets that Daddy loves him.

 I need the people in my life. I need to do what I can to be as normal as possible without

fooling myself that I'm normal. Of course I'm not. I fought every day in 2014, I'm going to fight 

my way through 2015. You see, I have a goal, and I'm saving nothing to reach it. Nothing left over. 

Or, as the Goddess Tori would say: Pretty good year. 

How Much It Loves You Back

The house has a scent wreath of meat, wine and garlic wafting from a slow cooker. It's being joined by the setting of brownies topped with walnuts coming to life in the oven (Mark Bittman, "How to Cook Everything"-we don't Duncan Hines in this household). This all in anticipation of my old friend Jerry, who is coming down for the weekend from Fort Wayne.

We are the oldest of friends, having met on the streets of Fort Wayne's tiny "gay block" downtown in 1977. I was 16, and not supposed to be there, Jerry was 15 with a Camaro that I coveted in chocolate brown with tan leather bucket seats--or was that pleather? It could have been, we are talking mid-Seventies. We have know each other since then, with breaks in communication--37 years!  I know he likes pot roast and brownies, as does Charles (as does any Hoosier). And that, I can do.

We haven't seen each other since before the cancer diagnosis and the surgeries and the changes. I'm nervous. I've written to him in my emails and begged him to be sure and not forget that I look different, that inside is still the creamy filling of Mark, but outside is a different story. I likely shouldn't worry. I'm not a circus freak, but if you knew me in 2012 the 2015 version is decidedly less streamlined. There's the bandages, the face mask, the coughing, the dry skin, the chemo jew hair, the weird patches of facial hair I ignore until they absolutely must be shaved (note to radiation: you took away 80% of the hair that grew on my face and I'm good with that, in fact, bravo. Life is much easier that way--but leaving the mustache and two patches on my upper cheeks? Such a bitch move.)

Because it's the holiday season, I've been randomly writing emails to people to say hello and tell them I miss them, which I do. I've grown fond of thinking of my past, and not in a "ein tag war hochzeit" sort of way (apologies, Sally Bowles, but that's real German Expressionism!)--rather, simply that it was better than I knew it to be at the time. This amuses me a great deal. I always felt apart from what I was doing in life, at least most of the time--either too sophisticated or too degenerate to care, too savoir to faire, too bitch to deal. Turns out to have been untrue--I live these moments now because I lived them then. I just didn't allow myself to think I was...

The reason that cancer pisses me off is that it struck me suddenly in the middle of the point of my life where I finally felt I was real, adult, present--at the point where I loved my job despite its shortcomings, and I loved the people I worked with in Washington, DC on the grant that funded it, and I loved my boss and my coworkers. I had a plethora of great friends I could call upon for help or fun or just for shits. I would have told you my ass was too fat but I liked myself, I liked my body, I enjoyed my own sense of humor. Then, boom, clap, all gone.

I thought of that moment, particularly, when the curtain came down as I received an answer to one of my random acts of emailing--from a friend I particularly admire whose mother has received a cancer diagnosis and isn't considered a good candidate for chemo. This is like finding a knife in your side that can't be removed for fear of losing the kidneys and eviscerating the spleen.

I will admit I don't know what to say about that cancer, about this event...knowing that sorry is a small word thrown upon a big wall of shit. That I don't pray for myself so I'll not be praying for her, except in my non-traditional way. I'll send my best most positive thoughts into a universe I know to be grim and hostile but creamy, like me, on the inside. I'll hope they make it through.

To anyone starting this voyage, I can only say it's time to pull your big girl panties up and gird your loins. The one step forward, two steps back thing is an apt description, walking through mud is another. But do this:

1. Let your doctor know you're smart and you want to be engaged:
         Ok, I know this is going to sound awful, but bear with me. On virtually every doctor's visit I've attended, the waiting room is full of people talking about that there sammich at Mickey Dee's made their guts hurt when they crapped. This is the gum smacking, trash talking, shit food eating heart of
'Murica. They've spent a life never exercising, never walking, never attempting a rational diet, hating brussel sprouts and eating lots and lots of Freedom Fries. They'd rather die than figure out a way to do anything but pop pain medication and act like nothing was really happening to them.
          This is what your doctor is seeing more frequently than you--a person who has read, studied, been curious, learned how to satiate that curiosity, acted, thought, theorized. You have rational responses, you know that cancer wasn't just a product of A or B, but like geometry, often enough, there's a C in there, too. You want them to take you seriously? Speak like a grown up. Express like a scholar. Shut up and listen, listen, listen. Often enough, the question you want to ask is contained in the answer to something else. Just shut up. You're back to undergrad, and Cancer U is not for the snotty self-assured A-holes who used to talk about ciphers in literature and New Criticism's application to the rise of Confessionalism in American Poetry circa 1955 onward. Just shut the fuck up. Try it, it's really refreshing. Not to have the smart ass remark, the bon mot, at the ready, but to honestly let your doctor know you WANT to learn. They will quickly see that you mean business and the entire way they treat you will change--for the better;

2. Advocate, and cuss:
          I have never said "fuck that" to so many doctors with so much good effect--because that's me, that's how Mark used to talk when he could talk. I don't know why I love vulgarity so much, but I do. Sue me.
          I advocate for myself by allowing my doctors to know who I actually am behind all this cancer--and that Mark is still very much alive and very much wants to stay that way. I advocate for myself by a process of concatenation of our last visit, our last theoretical discussion, our last possible future plan. For example--in my last visit with Dr. Dayton, my Oncologist, he was discussing the chest wall tumor we've been fighting. He believes that chemo will not completely destroy it this time, and we'll have to excise some of it surgically, and follow that with a skin graft, because this tumor occurs in a patch of my chest that was so damaged by radiation that the skin doesn't heal well, and abraids and forms open sores easily. (I know, so sexy to think about that, right?)  Last time I simply asked where the skin graft would come from, we talked about the importance of gaining weight to support the skin harvest, to maintain my relative health. I've been thinking of this everyday, asking myself what I want to know of this plan. I want to know how long the surgery will take, whom he will suggest should perform it (and then of course look up their credentials), where, what recovery time in the hospital would be necessary, what Plan B is if the skin graft doesn't take, who does the follow up care, and is he still my point guard on Team Mark, varsity Cancer Fighters.
          I advocate for myself by establishing that I've paid attention and done what is asked of me, and made it my own routine. As Dr. Wilkins told Terri the nurse at Wound Care last week:  I'm just the doctor, he's running the show.

3. I allow myself to feel
         Finally, and most simply, I allow myself to feel. I cry a lot. Sweet videos tear me up, baby animals affect me, people amaze me, beauty astounds me. I absorb as much of the universe as will tear through me in a day, every day.
          Words that have moved me: "fixed stars govern a life" (Plath); "Live or die, but don't poison everything" (said to Anne Sexton); "I'm Don Juan's Reckless Daughter, I came out two days on your tail/Those two bald headed days in November/Before the first snowflakes sail." (Joni "Goddess" Mitchell); "No voice divine the storm allayed/No light propitious shone/As snatched from all effectual aid/We perished, each alone;/But I beneath a rougher sea and whelmed in deeper gulfs than he." (William Cowper).  There are so many of these...
          To be in gratitude of the bounty of incredible things requires an innocence we are often bullied out of--a simpleness in the face of grace that we are told is semi-retarded. Hardly. That has it fully backward and half assed to boot. Yet how often we are talked out of our goodness and how frequently our mercy is never spent upon ourselves...

To my friend's mother: Good luck and welcome. Please decide you'll board the S.S. Survivor. Please set a goal--mine is live to 70. I like to think big--yours can be feel better by May, or just be of good cheer. One's goal within Cancerville need not be lofty, it just feels necessary to have an end point to the work.

Spend the time to find out why you're not a good fit for chemo, and what sort of chemo that is--there are all kinds of formulas and mixes and perhaps your oncologist is overlooking an older therapy that is not currently vogue that might work for you. For me, they pulled me in a very old cancer fighter that helped me for many months--in fact, it was part of bringing me back from concentration camp Mark to almost pink faced Mark. My oncologist at the time dug deep to think outside the reigning paradigm and it worked. Make sure your oncologist knows you believe in his/her ability to do the same, and to be a bit daring if you will be too.

My oncologist knows my goal, and he thinks I can do it. That's because I have told him I want to, and he has seen that I have a certain power to getting what I want. Mark A. Price, the honey badger of cancer fighting. Your oncologist should know yours, and why you want it, and who you are, and why you are worth assisting, rising, to meet that goal you've set. You must convince them you are ready to survive because survival is not just something that happens--it is something that you make happen.

It is Sisyphean to survive, because it is done and redone every single day. There is no let up. Once you commit to the merry go round, that bitch goes round and you do not get off. You believe in yourself or you slide off. You act like an adult or your grip loosens. You love what you have because you hate to have lost what you lost.

Now, look around you. It's beautiful, the yellow light of a sun, the diffused light through a cloud. The composition of color as you look out the window--here, early winter, it's yellows and browns and grays with some small weeds in my old shade garden tossing red in a leaf or two. The maple tree has gradients of grey and black, streaks of moldy green and rust. How could you leave this? How could you not want to learn to love this and see, finally, as an adult, as a survivor, as someone special as you are, how much it loves you back?

Who are you, anyway?

It's Sunday and I've been up since 4am, victim to misplaced fluids which refuse to leave my throat, and refuse to move, and won't respond to my attempts to dislodge it. I can breathe, but it's in the way, and I can feel it, and that irritates me. I made a pineapple upside down cake at 5:30am because my nephew and his partner, girl partner, woman, his "sex", are coming over in the late morning and his birthday is quickly approaching on the 12th.

I have had to twist his arm to allow me to make him a lunch, which I had hoped would be a dinner, which I believe he will enjoy if he allows himself to do so. He will, he informs me, forgoe the joy of White Castle for the privilege of the strip steak I have in soy dijon marinade in the refrigerator. For the honor of allowing me to make him some roasted potatoes, roasted brussel sprouts with walnuts and a small bit of fresh corn cut off the cob.

Jesus Christ, I'm like my mother.

This is the way she was--a bit snarky, everything an event horizon. My poor little nephew is probably ready to sneak out of Bloomington and drive back home, and I'm gluing his ass to a seat at my janky dining room table (it really is janky), and listen to me pontificate for an hour as politely as he can before he escapes. His girlfriend (I truly don't think that's quite the word, but I don't know what to call her) doesn't like me and has made that obvious on several occasions of being semi-rude to me; I care little. If my nephew likes banging her, it's not my business. We can be frenemies over all, as long as the boy is happy.

I am not quite as bad as my mother about cleaning the house this time around. I'm learning. Usually when someone is coming over for virtually any reason, I'm dusting the baseboards and freaking out about pubes. Today, not so much--Breathing is not normal, snot is not flowing as it should, I'm tired. Fuck it. If there's dust on the television and that traumatizes you, I pity the life you are forced to lead.

Thank you cancer, I'm not just like my mother.

But she too with her cancer had to step down a bit from her tornado of housefrauing. Once my father had died and she no longer felt compelled to wipe down the toilet with antibacterial after every visit he made in there, she looked about herself and understood she wasn't made to keep it up. It couldn't all run like Mussolini's trains. She wasn't young, she had cancer, and it was killing her, and she knew it.

I am like my mother when her practicality switched on. I'm tired, and I'll be tired. I have lower event horizon reactions. I wait longer to do things. I do them in smaller batches. I avoid up and down, up and down, and hope for long periods of interaction, not action.

Yet, I am like my father, which is a damnable thing. As established here earlier, the man just didn't like me, and never did. In my early years, he took delight in telling me what a disappointment I was; in later years, he simply ignored me as best he could. I in turn couldn't stand being in the same room with him, feared him, disliked him, and only put that aside for the last ten years or so of his life for the sake of my own sanity, to explore whether we had anything in common at all.

It turns out we have plenty in common, probably the biggest problem between us. My father never liked himself all that well, and he certainly didn't like encountering himself in me. He didn't like my smartass mouth, he didn't like my verbalness, he certainly was never in favor of my fagness, though he kept that to himself. But we both had stubborness. and intelligence and perseverance and intuitiveness and a belief that whatever we felt about ourselves personally, we were worthy of respect, and dignity, and by god if you didn't give it to us, we'd knife you as fast as look at you.

Those traits, benighted as they often are, are useful in fighting cancer, in fighting insurance companies, in demanding to be treated as a person of skill and agency and intelligence. You may not know but once you are marked for death in the system, a lot of people simply write you off--you become the ghost who watches as your spouse is consulted, the shadow who breathes while others sign forms, you are not the king anymore. Once in such a position you have to fight your way back, prove yourself, yell, declare your agency. You have to be rational but firm, you have to question your doctors and direct your treatment and demand that you be given the full range of options and information.

Then it becomes easier, as my mother would have had it.

Apparently, my mother was very popular at her infusion center because of her good nature, and she certainly had one. She was not tempted to blame anyone for her condition or make their lives more difficult because of it, and I've consciously tried to pattern myself that way because I respected that about her so much. Like me, her sentence to chemo was life long from the point of diagnosis. It went on for years, she was quite tough. I have that from her, her utter resilience, my sister had it. We three cancer victims learned from one another like water cascading down a smart hill. I am the fortunate recipient.

Today, I'm trying as best I can to be Mark, but Barb is poking out of me when I look at the pineapple upside down cake and second guess me decision to not use those gross cherries on it (ugh, maraschinos, so Fifties). Jim is sticking me in the ribs and telling me I'm a failure because I can't get my nephew to dinner, so he must think I'm stupid. Hardly, I tell Jim, the boy has his own life. Calm down, Barb, I say to her as she stands fretting, looking at the cake tray. Mark is here, the coffee is ready when I need it to brew, the steaks are prepared, the potatoes are roasting.

My mother didn't like most of her daughters-in-law when she first met them. They were just never quite up to her snuff, not perhaps good enough for her two heterosexual sons. My dates or relationships she was invariably nice to, but they weren't permanent to her (or, mostly, to me). She had no expectations. My father sat smoking in the earlier years, on oxygen later, and said little, preferring to act as if what was on television was much more engrossing that I or we could ever be.

And, I am all of that, all of them, all of me. Waiting for Jason, waiting to chat, and feed and fuss, and even love, a bit. Unlike Barb I'm not lovey, and unlike Jim I'm not distant. I am Mark, I have cancer, I am surviving it every day a little bit, and I am all of us.