Milky Way

I posted to the blog a few days ago and immediately regretted it. Unfortunately, I didn’t have computer access when the regret set in and so It took a few hours for the post to come down. I apologize to anyone who read it, it crossed the line into pathetic. Finishing treatment {if one can ever consider themselves finished, with all the follow-up appointments}, has been anticlimactic to say the least. I don’t feel celebratory or excited, I feel tired, sore and alienated. I feel very uncomfortable around people, I don’t know what to talk about, how to just be, I feel different, awkward, a refugee from hurricane cancer. I feel heavy of spirit and heart. Maybe it’s that I’m still one big boo-boo. I’m burnt and sore. I’m peeling, but instead of new, healthy skin underneath, the peel reveals more burn. My feet are still numb, shoes are difficult, balance comes and goes, fatigue is overwhelming.

So this is my post from last weekend, but edited. I don’t usually edit, I blab and post, but maybe it’s time to exercise at least a spec of self-control.

I’m most comfortable at home and at my studio and I’m so grateful for these places. I was standing at my kitchen sink yesterday, washing apples and I almost cried, I was so grateful for my kitchen sink... that I have this home, this comfortable place {cluttered and messy as it may be}, HQ, homebase. I’m not worrying about the yardwork or the old water pipes, the paint chipping off the front porch, I’m just so fucking grateful I have a kitchen sink... and a bed.

I’m going to spend this gray day in the studio where I have specific goals and lists of things that need to be done, deadlines are good, without those I wouldn’t know what to do with myself or where to begin. I feel peripheral, like a shadow, a ghost... there, but not really there.

I went to a halloween party last night because little boy made me go, we’ve gone the past few years and it’s an elaborate affair. Months worth of decorations, endless food and elaborate costumes. Previously, I’ve wanted to stay and he’s wanted to leave and this year we were role reversed. I didn’t know who to talk to, or how, and if anything brings out cleavage it’s halloween costumes. Lot’s of skimpy costumes with boobus erectus. Everyone dancing and feeling sexy, I can’t imagine dancing and feeling sexy anymore. For all my talk of not being defined by my breasts, I miss them more and more, I feel like an amputee. I feel old and tired and quite thoroughly unsexy. I had dreams and delusions of dating and adventures when my marriage ended, but now I’m feeling lone, empty, depleted, damaged. Everything happened so fast and with such urgency, I didn’t have time to think about what it all really meant.

I want to find my footing, my bearings, but right now everything just feels alien. I'm disconnected, untethered, maybe the wind will lift me up and I’ll fly away. I feel lonely, so I eat junk food and then I feel a thousand times more guilty than you would, because I’m convinced I’m giving myself cancer. I’ve spent a year trying to stay alive and now I’m killing myself with sugar. Death by fried food and chocolate, I know what’s bad for me, and now it feels lethal, but no less appealing which is disturbing.

Fast forward a few days, It’s halloween, I’m splayed on the couch with the laptop while little boy watches cartoons and eats candy and the doorbell rings are dying down. I'm exhausted from strolling the neighborhood. Halloween seemed much more lowkey than usual, that’s his take too. I just gave all the milky ways to the last trick or  treater's so I wouldn’t eat any more of them. I only eat milky way’s on halloween, but I can eat a lot of them. I did eat a lot of them.

I’ve been working like crazy getting the store ready to open, I sure hope it’s a good year, I hope the farmer’s market makes me feel more festive. If nothing else, it will eradicate any excuse I have to avoid Kale and that will be helpful. So much to do in the next 48 hours, I won't have time to be morose, that's probably a good thing.

James Bond

I feel like James Bond who’s been tortured by being hung from ropes by his armpits. Not smooth nylon rope, but scratchy shipyard rope. After freeing himself, James would run a minute mile, kick ass, catch some bad guys and then have a “date” night. Not me, I’m whining and complaining. Tomorrow’s my last day of rads and I won’t be leaping across the finish line, champagne and streamers in hand... I’ll be limping across pondering the timing of my next nap, it's sadly anti-climatic.

It will, however, be heavenly, truly heavenly, not to have an appointment every single day. Next Thursday morning, because the boys go to their dad’s on Wed. nights, I can sleep late, as late as I want, sleep, sleep, sleep.

I know I sound mopey, but it’s been a good week, a lot is getting done in the studio to prepare for the store opening, which is more of a store/gallery this year and it’s looking beautiful. It’s gratifying to see it come together and I have a really lovely, wonderful group of artists consigning their work to me. Some I’ve known for a few years now and just love working with and catching up with as they drop off their inventory, and new one’s that have all been a pleasure. My new rule for vendors is I have to love your work and really like you too. No bullshit, no high maintenance drama crap... it’s got to be fun and easy. I’m lucky to be surrounded by such great and talented folks.

At radiation today, I criss-crossed in the dressing room with the always distraught russian lady. She saw my burns and volunteered hers and then started a muttering chant of “god help us, god help us,” probably long past my leaving. The techs, as usual were eating donuts and slugging down their jumbo sized drinks from Honey Dew. I usually ask them to turn the music off in the rads room when it’s my turn, it distracts me from zoning out and I prefer not to be there. Except today they had on Linda Ronstadt who was singing “poor, poor, pitiful me”, which just seemed too fitting. I need a new cast of characters, truly, I’m ready to move on.

Small World

If chemo is cumulative, so is radiation and it's hit me like a brick. I'm so tired, so sleepy and the burn has spread to my right armpit and hurts like hell. My happy countdown has morphed into an endurance test and I'm afraid of each new day and how increasingly tired and sore I'll be. The powers that be refuse to give me the last laugh.

I'm getting anxious about my reentrance to society after my parole is granted. I'm feeling alienated, detached from other people. Aside from the small circle of friends I saw regularly through this ordeal, I don't feel comfortable with people, I feel different. I've been bald and sick for a year, I finally have some hair and eyebrows, I look more normal than I did a few months ago, but I feel increasingly different and alone.

When I was in chemo, I kept being sad and disappointed about missing things -- events, gatherings, I so much wanted to remain a part of things, I still felt social, my world was bigger. Now I feel disconnected from these things. I don't want to be anywhere but home with my kids or in my studio -- my little world. I feel self-contained, in a glass bubble and I don't know how to be anywhere else, my world has gotten smaller.

I stole a johnny from the radiation place so I could be a mental patient {shock treatment} at a halloween party, but I don't really want to go anymore, don't want to be in a room full of people, don't know how to make small talk, would rather stay home, but I promised little boy... I'm hoping he forgets.

Breathtaking Excitement

I shaved my legs this weekend, need I say more? Drudgery? Oh no, it was glorious, if only I could have gathered the pretty dark hairs and grafted them to my scalp I would've been all set. I am damned sick of seeing my shiny head. I was fine being all bald, but this middle ground is driving me nuts.

I should be in the shower, I have rads in 45 minutes but I'm procrastinating because I don't want to go, I'm really sore and could do without this last week. I'm on a mission though, to steal a Johnny for my halloween costume, I hope there's some good ones in the laundry bin. I complained about the nasty signs and there was neither compassion or action, so they get what they get. Bad behavior begets bad behavior. I'm going to be a mental patient -- shock treatment, cause I got this patchy white hair sticking straight up why not use it? A few months earlier I could have put a lightbulb in my mouth and been Uncle Fester. Figure I'll wrap my wrists in bloody gauze. I'd rather be a prostitute or movie star in a sexy corset, worked the cleavage, but that ship has sailed, got to work with what I have. I'm actually regretting not working the cleave when I had it, ah well, hindsight.

I'm going to a party with a "hobo ghost" wearing a sign that says "will haunt for food". I started to ponder the political correctness of that, but stopped myself. Little boy can be whatever little boy wants to be.

Sparky

It’s been a long, busy week, my apologies to all who were worried by the absence of posts. I’m so happy to be back in the studio and setting up shop that I’ve planned a grand re-opening party to celebrate, but what I’m really celebrating is my release from the medical industrial complex, hopefully for a good long while, hmmm, how about forever? How about if I just die quietly in my sleep at 80? Yes, I’d choose that over any likely alternative. Truthfully though, I feel more energized than I have in ages and it seems wise to seize the moment and be jolly... have a party, why not?

Last week I got my new wall, my roller wall on wheels. For the amount of time, sweat, and exhaustion it took for me to paint it, you’d think I’d done the Sistine Chapel, instead of a flat 6’ x 6’ wall. To think, I used to paint walls on a whim, yeah, those days are gone long gone. I have serious getting-back-into-shape business to attend to which isn’t my forté.

The pretty blue car has been named Sparky and she already has a warning light going off, so at some point we need to go back to the dealers. You’d think for the big bucks, you’d get more than a few weeks before needing to take it in. I think every time you have to take a new car in during the first year, you should get a rebate.

My adrenaline is countering the radiation fatigue but I’m sleeping more soundly than I have in years. I’m glad there’s only a week left of rads because I’m burnt to a crisp and can only handle so much. I’m itchy and sore and stiffening up. I’m also hungry all the damned time. The upside of chemo is you just don’t have to deal with hunger, it’s kind of a relief, eating is simply utilitarian... and sporadic. Knowing that eating healthy and losing weight is essential to keeping my body as inhospitable to cancer as possible does nothing to quell my desire for junk food and heaps of pasta, white... not whole wheat. “But I deserve it” is a big ole excuse and I’ve got to get back to the green smoothies. I went to the local vegan bakery and bought a green drink and treat on the way to work the other day and at $12, I need to get my blender going again. The beautiful vegan bakery is next to a Dunkin’ Donut’s, it’s pretty funny to see the difference in clientele on the way in.

I was officially diagnosed on Nov. 8 of last year although the realization that I had cancer had already slowly sunk in. My Intuition mixed with the demeanor of technicians and doctors had me prepared for the diagnosis. It’s hard to believe it’s almost November again, so much has happened in a year, it’s hard to remember what came before. Of course, getting separated after 23 years of cohabitation was big change enough, stack that up with cancer and yeah... it’s hard to remember, hard to process. I am looking forward to settling into some kind of routine, some kind of calm, it’s hard to know where to begin. My goals have changed, my priorities, my expectations, my relationships. It’s been a tornado and as the winds die down I have to figure out where all the pieces of my life have landed and which are retrievable and which are not.

Cancer has been my full time job for the past year and it will color the rest of my life, I’m high risk and I know it, but it seems like just words, despite everything, that part doesn’t seem real. What do you do when something all consuming is finished or at least on hiatus? How do you move forward with so much hanging over your head? You embrace the cliche’s, you live in the moment, I suppose. I guess if life were a movie, a good bit of fiction, I’d go travel the world, have adventures, have an epiphany, find true love, but in the real world I suppose you just keep figuring out how to pay the bills and get to the grocery store, you keep raising your kids and find joy in the minutia. You let go and see what happens.

Miss Etta Sings

Etta James launching into the refrain of At Last, the smooth, sultry tones are swirling around my head, at last... my taxes are done. phew. My accountant is a slow talking, quiet, sweet man who recently visited his son in Los Angeles. He saw the Leno Show while there {twice}, and Wheel of Fortune and says television doesn’t do Vanna White justice. He was pretty darned impressed with Vanna, her face, her figure which belies her age, her style, the whole package that is Vanna, she must have a personal trainer, he shared, and I agree, yes I do.

I have exactly two weeks left of radiation, 10 more times in the toaster, and I’m getting giddy at the prospect. For the first time I feel like there really is an end in sight, and I can barely even imagine what it will be like to have my life back. My plain, old, boring life, I’ll take it! Days free from waiting rooms and procedures that will hurt or make me sick, no drugs, no poison, no ray guns, no needles. I can just keep on feeling better each day, rejoin the civilian population and have so much more time, sweet time.

I know the MRI scare of last week will happen again, and I still have to deal with the HepC, although I’m surprisingly unworried... hmmmm, I wasn’t worried about cancer either and that kinda backfired, but still, I’m not going to worry just to make a point. I know there will be scare after scare until at some point the news isn’t good. That will happen when it happens, so I just have to let go and time will tell, as it does for all of us, in so many ways. I think it will all be easier when I’m not in the system, so to speak, when my whole life doesn’t actively revolve around cancer. I want out... and I’m getting out... paroled in two weeks, yahoo, I really can hardly believe it!

All Clear

MRI CLEAR, I’ll start with that. It wasn’t a scan of my whole body, just my abdomen, but that includes a lot of good stuff, liver, kidneys, pancreas, spleen, etc. Despite my bones and gooey brain being excluded, knowing that these areas are clean makes me feel cancer free for the first time. This is a good feeling.

The cause for concern is that my liver function tests have been becoming increasingly, alarmingly elevated since I finished chemo. Now that metastasized cancer has been ruled out, the most likely culprit is my long dormant HepC. I’ve had this virus for thirty years without much of a problem, but the chemo suppressing my immune system for so long may have given the virus the opportunity to run rampant and now it’s battling with my newly returned immune system and my poor liver is getting hammered in the crossfire.

Either my body will figure it out or {gasp}, I might have to finally treat the HepC which entails a year of debilitating chemo, sound familiar? I’m not even going there. My father is a healthy, 93-year-old, lifelong alcoholic who while being a douchbag, is perfectly healthy, so I’m just waiting for my superior liver genes to kick back in. I’m seeing a specialist next week, but I think it’s just gonna be a wait and see thing for a while.

Phew. That’s all I can say.

Labyrinth

I feel like I’m living a double life. In the fresh a.m., I’m happy-go-lucky mom, making fruit smoothies, packing lunch, checking that everyone has their stuff, and driving off to school. As soon as I get home, the race is on... healthy breakfast, shower, and I’m off to radiation and for the rest of the early day, I’m a patient, a cancer patient, I’m consumed with test results, medical appointments, worry, complications, discomfort, but as soon as it’s 3:00, I’m carefree mom again, listening to everyone else's troubles, pestering about homework, and healthy eating, comforting, feeding, and despite how I look, there is no indication that I have any other role, any other life. I try to keep my lives disconcertingly separate, but one wafts over to the next, in my mind, in my heart, and it’s scary and it’s sad and I feel like it’s all a big masquerade, but what else do you do? How do you reconcile the two? No one at home is willing to acknowledge my other life, it's their way of coping I suppose, and I go along with the lie.

For the past year, It’s been one phase of diagnosis and treatment after another. Radiation, hideous burn/rash notwithstanding, has offered me a routine where I know what to expect and know what I can do with the rest of my day and the end was in sight. I’ve never been particularly routine-oriented, but now I crave it. I found out last Friday that increasingly abnormal blood test results require further looking in to. While I’m used to being poked and prodded and trotting off to one medical building to the next, I can’t bear starting a new phase of wait and worry, wait and see, a new phase of diagnosis and god forbid treatment. None the less, I’ll obediently march to my myriad appointments, put my life, or what I delude myself into believing is my life, on hold a little longer, what choice do I have? I guess once a cancer patient, always a cancer patient, that’s the new identity, new reality, I have to adjust to, accept, acclimate, whether I see myself this way or not, whether my children see me this way or not, it is what it is, I can’t pretend otherwise forever. Cancer treatment isn’t benign, it isn’t finite, while it “cures” one thing, it sets other balls in motion, it's a chain reaction, a labyrinth with no end, it is the rest of your life. This is a hard realization, a difficult thing to accept.

I had the nicest weekend with my kids. Farms, friends, corn maze, french fries and pie. Movie night and yahtzee, pancakes, and ping-pong, but tomorrow the duality begins anew as I drop off at school and head out for an MRI. Never thought I'd miss my port, but damn, the one thing I hate is IV's stuck in my hand, which come complimentary with an MRI... wouldn't have known that a year ago. There's a lot I wouldn't have known a year ago.

The Emperor

I’m coming down with the bug travelling through my house so I’m tired on top of tired. I’m getting eyebrows and my hair comes in more everyday, it’s fascinating to watch, you can practically, really, see hair grow. My radiation rash also gets worse every day which is not fascinating to watch.

Every day when I get to the women’s changing room at radiation, there’s a woman already in a stall whimpering, possibly weeping, every day. I finally came face to face with her today, a large russian lady who was difficult to understand, but something about her shoulder, three advils and vicodins and she went into a stall still muttering. I might have walked out while she was talking to me, I knew they’d be coming for me and I just didn’t know what to say, so I just walked out.

The feisty, spunky woman I met at rads has learned that her husband is pretty much at the end of his treatment options for multiple myeloma. This strong, energetic man, husband, brother, son, the father of two young children hasn’t made progress at rehab which means he gets booted home with a hospital bed, wheelchair and commode. They told her that it might take a long time for him to die because when you’re young and healthy with a strong heart, dying might be premature, but it’s slow. He’s in unbearable pain, on every drug in the book and in agony. Their situation is too much to even contemplate, heartbreaking, sickening, awful, these words don’t suffice.

I have to get out of cancer world. Everyone knows a person or two with cancer and most live in fear of getting the diagnosis but that only consumes a small amount of total time. When you’re dwelling in cancertown, everyone has cancer and it skews your outlook. Cancer becomes normal and it shouldn't. I hope I get a good long furlough, I want a change of scenery.

I found this review on Amazon for the mosty aptly and beautifully named book The Emperor of All Maladies:

You remember the scene in the film "Butch Cassidy and the Sundance Kid"? From the top of the bluff looking into the distance at dusk, Butch sees the lights of the pursuing posse which doesn't stop tracking them even at night and says "How many are following us? They're beginning to get on my nerves. Who are those guys?" In the same threatening way cancers have been dogging human beings since the dawn of time, and although we now know quite a lot about cancer we still don't really know "who are those guys" or how to shake them. And they sure are "beginning to get on our nerves" as Butch said. Almost one out of four of us will eventually wrestle with cancer -- the defining illness of our generation -- and lose our lives in the process. Until it catches up with us most of us will try to ignore this fact, just as when we were very young children alone in our bedroom trying to go to sleep at night we tried to ignore the monster that we sometimes feared might be lurking in our bedroom closet.

Yeah, cancer is getting on my nerves, I want a break, a little breathing room.

Dorian Gray

Spiky white hair and receeding hairline, I look like a generic, quasi-european arch-villian from a bad movie, a la Malcolm McDowell, in his self-parody stage. In my former life, before the salt and pepper, I had darkest of dark brown hair, often mistaken for black and a freakishly low hairline. This new look is increasingly disconcerting as it becomes the norm, I slowly forget my former self. That happens with age, was surely happening already, but this kind acceleration is jarring.

I’d planned on watching big one play football on Saturday and taking small one to corn maze and pumpkin patch on Sunday, but weather outlook for Sunday is dismal. Might have to forego HS football {sacriledge}, in favore of outing with little boy who I think needs it more. He’s been winding up in bed with me every night, earlier and earlier, and as he goes to dad’s tonight straight from school, he is lamenting that he won’t see me until after improv tomorrow {now that he walks over with the big kids}. I’m fairly useless in the afternoons with him because I’m so tired and fixated on either closing my eye’s or feeding people, that I feel like we need some quality fun. Always hard to choose between the two, but I figure I can watch the video of the game afterwards with QB.

I’m about to write a press release for Craftopia because it’s overdue and it’s the task I hate the most and am simultaneously worrying about and procrastinating, which is pointless, so just gonna get it over with while I wait for the debate. It’s embarrassing, but the debate is like the superbowl for me, I’m so excited, and I’m fully confident and expecting my team to mop the floor with that weasel-man at the next podium. I realized that Mitt Romney is like Dorian Gray, I used to find him bland and benign, but as he trades his soul for power he gets more dangerous every day. I keep thinking about the trip I took to Boston with G last year to see Obama at a rally and how it will always be one of my most special memories. An amazing thing to share with my son who wanted to go as badly as I did. We were a team that day and we experienced something remarkable, I’m so glad I had that day.

Folliculitis A True Story

I have folliculitis, my newest, oh-so-glamorous malady. It sounds made up, I know, but alas, it’s a prickly, red, itching, burning, yucky rash on exactly half of my chest. My hair follicles are apparently not amused by this radiation business and they’re protesting, they’re inflammed, literally. I never considered my hair follicles in such a non hairy place but I guess the little suckers are everywhere. I’m putting this goop and that goop all over it, but it remains quite uncomfortable, I just hope it doesn’t get worse.

Aloe, I’m told by the radiation doc is a natural form of cortisone, and I should be using it on it, which I am, but I suspect the unnatural cortisone in the plastic tube might actually work better because thus far, the aloe isn’t cutting it. Oh, poor little hair follicles, you’re only halfway done being abused. Yep, turns out I’m halfway done with radiation, I hadn’t been keeping track, I just planned on showing up every day until someone told me to stop, but today I was informed that I was halfway done, which is further along than I would have guessed. But just like so much else in the odyssey, it’s hard to remember life before. Did my daily routine not consist of changing into a hospital gown every morning and laying on a metal table before going to work? I’m sure it did, I just can’t remember it. This cancer treatment is really not for the faint of heart.

What bothers me the most about radiation, however, are the signs in the women's changing room. A small, dark, dingy room to begin with, it's covered in laminated signs telling us what to do, only they're yelling at us. The signs are all caps and each sentence ends in multiple exclamations points, by the last sentence, there's about 14 exclamation points. DON'T LEAVE YOUR ROBE IN THE CHANGING ROOM!!!!!!!!!!! DON'T PUT YOUR ROBE IN THE LAUNDRY IF IT HAS YOUR NAME ON IT!!!!!!!!!!!! ROBES WITH YOUR NAME GO IN YOUR CUBBY AND WE WILL WASH THEM WHEN IT IS APPROPRIATE!!!!!!!!!!!!!!!!!!!!!!! All single spaced, and I want to scream all-caps-are-not-more-readable, they're less readable!!!!!!!!!!!!!!!!! Because shouting begets shouting and it's a slippery slope from there. I'm sorry that the staff was annoyed by the patients, but you know, we're all a little dazed by the time we get there and extra robe laundry isn't going to kill anyone. In other words, our problems are worse than your problems. As I was parking my car this morning, my doctor parked next to my little blue beauty in her tricked out Toyota mini van Limited Edition. I peeked inside after she went in and it had all the gizmos, leather seats, full screen GPS, lots of extra buttons and I thought, yeah, this practice could wash those robes a little more often because I know for a fact that mine hasn't been washed since my first day there.

Regrets and Chicken Butts

I have regrets, powerful regrets. First and foremost is the decision to cease shaving my head a solid month prematurely, the results are not pretty! I’m embarrassed to be in public for the first time and I’ve been bald, so put that in perspective. I look like a cross between Capt. Picard {Patrick Stewart} and a chicken butt. The tufts on the top of my head are thin, varying lengths and stick straight up letting my shiny skull glare at all in my path, while the sides of my head are ringed with white. It is a look... one I could do without.

There is a disturbing proportion of obese radiology techs at the place I visit daily. You’d think working with people in the sorry shape they do would be a wake up call, but apparently not. They’ve finally starting turning off the radio without my asking which is appreciated because I always feel like a pest asking. I can’t zone out with the tinny radio on, while the humming, buzzing, noisy machines don’t bother me a bit. I lay in the awkward position, right arm over my head, that they’ve maneuvered me into, close my eyes, roll my eyeballs back in my head and breathe deeply, 1, 2, 3, in... 1, 2, 3, out. The hydraulic table goes up, down, turns and while someone mentioned that it makes them feel nauseous, I love it. I feel like I’m on a boat or a train, it’s almost like a spa day. Spa day in hell maybe, but a spa day none the less.

One of my rads mates asked how many times they zap me, two or three, and I didn’t have a clue because I’m barely there, I’m on a train. She brings a notebook and counts how many seconds each zap is, you can tell, it’s a distinct sound. She counts how long each one lasts and records the numbers in her book and when she has enough she plays them in the lottery. I’ve never wanted anyone to win the lottery so badly in my life. Sure, I’d like to win, but I don’t play, so there’s no point in rooting for myself.