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.
Wednesday, October 31, 2012
Thursday, October 25, 2012
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.
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.
Tuesday, October 23, 2012
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.
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.
Monday, October 22, 2012
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.
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.
Saturday, October 20, 2012
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.
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.
Friday, October 12, 2012
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!
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!
Wednesday, October 10, 2012
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.
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.
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