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?
No comments:
Post a Comment