Monday, December 24, 2012

Jolly Happy Very Merry

My boys returned this morning from their weekend at their dad’s. The big one is a wired, jolly, lunatic and the little one is a sweet, happy elf, although the wired lunacy seems to be infecting him and that’s fine by me. Happy house, festive house, that’s my cup of tea, soon to be a full house, as we have our annual xmas eve soiree. I’ve been enjoying every minute of every day. The past month has been a string of perfect moments, unexpected moments, blissful moments, and tired moments, but I’m able to do so much more than I could a few months ago. Business at the shop has been great, kicking last year’s ass by a mile, and I’m having a full spectrum holiday experience. Sometimes I have a moment of panic, thinking that I’m so happy because it’s going to be my last holiday, or my last healthy holiday and then I just squelch it. I refuse to have that be true, that is just not possible, this phase of life, this chapter is a beginning, not an end. If I could will Jonah into existence despite profoundly flunking the fertility tests, I can will myself into health and enduring remission.

My living room has been sans music for two years, since I let the exiting party take the stereo system and the Bose radio which was rightfully his, a gift to us both, but from his father, so certainly it was right that it go. The only part of the stereo system that was mine was the Pioneer receiver which amazingly I’ve had since my early teens {wish they still made things so well!}, so I just figured he should take the whole thing. The only realms in which I’m brand conscious, because I just believe they make superior products that are worth every penny are Apple and Bose. Sure, I could listen to a thousand sound systems and find something comparable, but nothing’s going to be better or more compact than a Bose, and who’s got the time? But damn, they are expensive and I couldn’t justify the purchase. I’m always pondering it and then backing down, but last week on my way to work, before I even realized what I was doing, I was on 95 north, en route to Wrentham, where I know there is a Bose store. I walked in and out in 10 minutes with a beautiful new Bose wave radio, no regrets, and a little bluetooth accessory from which is streaming full, rich, holiday music from my laptop. Oh heavenly sound, the difference between what comes out of the laptop and what comes from the Bose is profound. I’m in love with the thing, despite it’s temporary home due to my old outlets and the need for an adapter. I’m grateful to my bossy subconscious that just plain took over and bought me this excellent holiday gift. Thank you me.

Wishing everyone a most excellent, very merry, happy holidays and a fine and fabulous new year!

Thursday, December 20, 2012

To Catch A Thief

I’m listening to the sound of little boy whistling bits of the Nutcracker while getting out his homework. Tall one at computer doing homework, tree lit and pretty, hum of gas fireplace keeping us warm. It’s been a good week, albeit an odd sleepy day. I’ve finally reached the point where I can wait for test results without anxiety, a switch has flipped. I saw the doctor I trust most, and she was baffled as to why my PCP ran a Ferritin test sans the tests that go with it. This one test alone, apparently is quite useless without the corresponding tests that give a more complete picture, additionally it doesn’t actually measure the iron content of my blood, it could just be residual wonkiness left over from chemo. This was explained to me, and it made sense at the time, although like most things, I can’t remember the details. She thinks my liver is stressed from spending a year trying to process so many vats of toxic sludge. So my levels are all out of whack and she thinks they’ll calm down. On the other hand they may not... and I may in fact be laden with heavy metals. Blood has been drawn and sent to myriad destinations, more will go on it’s way every month for the next few and we’ll see. I’m calm, I’m not placing frantic calls begging for results, when they call me, they call me, I’m not going looking for trouble. Nothing is interfering with my thus far, totally awesome, going way too fast, holiday season.

This eating thing has gotten so tricky that I just plain give up. If I have too much iron that means I shouldn’t eat meat, beans, spinach or foods with a lot of vitamin C {my beloved clementines}. My sugar is high, so I should avoid carbs and today I went for acupuncture and she told me not to eat raw fruits and vegetables because those are stressing my body, and as I don’t like cooked vegetables much, I like them cold and crunchy, that’s a problem. My liver is unhappy, so no alcohol, and after that, what is left? So I think I quit, I’m just going to eat what I want, trying to keep it within the confines of healthy and varied, unfortunately, the alcohol ban is an unfortunate no brainer, that I need to adhere to... until xmas eve.

Santa, as always is going to be far too kind to the residents of this house, but I know someone who’s getting coal, nothing but coal. That would be the person, whoever they are, who stole the bulbs right out of my xmas lights, the one’s they could reach anyway and that’s enough to keep them dark, those six empty sockets. These are the lights adorning my store’s sign, the one that juts out perpendicularly from the wall, the one that can’t be seen from the entrance of the building due to my less than optimal, far flung location, the sign that needs to be wrapped up in lights to be seen, to let people know that I’m open. Despite the countless other bulbs I have in my possession, none of them are compatible and I can’t change the whole string because I lost my ladder. Yes I lost a 6’ ladder, and I’m very sad about this because sometimes you really need a ladder and at my height it’s more often than not and additionally, I’ve had that banged up ladder a long time. All I can figure is that I left it at one of my events and it got absorbed into the maintenance room, but they’re not digging that hypothesis and are not giving up any ladders. They will also no longer lend ladders without the signing of forms and paying of a fee to the building manager and on principal, that ain’t happening. If it were left to the maintenance guys, they’d gladly help, but they fear the wrath of management and I don’t blame them. My question is “who the heck steals someone’s tiny light bulbs?” As I don’t expect an answer to that, I take solace in the big pile of coal that surely awaits them and karma.... please let karma be that bitch everyone says it is. I hate that B word, so I’m a little uncomfortable using it, but there’s really not an appropriate synonym. So go karma, go do your thing.

Friday, December 14, 2012

Green Fields & Heavy Metal

I’ve been imagining my body as a field of tall green grass, an endless field of fecund sprouts and wheatgrass below a stone still sky. This place is inconducive to cancer. Any stray adverse cell that wanders in is engulfed by my lush green grass, disintegrated and harmlessly absorbed by the soil, quietly, peacefully, easily.

A friend the other day asked if I was back to working a lot. I answered -- well, I could be working a lot, I’m just choosing not to. She asked what I was doing and I told her I didn’t really know... bopping around, visiting with people, doing whatever the heck I feel like. Actually, I have been at work a good bit, just not every minute like I would normally do and I confess to spending a good bit of my time there wandering around talking to whoever I run into and probably chatting my poor studio-mate to death.

I’m starting to cook again, I’m listening to music instead of the news, watching movies and being cozy by our xmas tree. I’m happy, I’m watching Dr. Who with my little buddy I’m living in the moment. The tall one is now 6’ 3 & 3/4”, I am 5’ 3 & 3/4” so I think he will stop growing now and be exactly a foot taller than I, there’s something poetic about that. When you look at a ruler, a foot is substantial, but not overwhelming, but when you stand next to someone a whole foot taller, a foot is huge, and when it’s your baby, well, that is something. We are making college lists... well, talking about making college lists and procrastinating the actual list making. Dude rocked the PSAT, I just found that out a few minutes ago, my guys are both in good places, happy campers.

I’ve been feeling great, I finished radiation barely two months ago, but it feels like two years, I’ve so enjoyed my furlough back into real life, my stint on the sunny side. I saw my surgeon for a follow up a couple of weeks ago and she urged me to see my primary care doctor for a check up, to get all my blood levels checked. I was so surprised when I finished chemo, that they just sent me on my way. I asked if they were going to check all my levels and see if everything was working as it should, and I was told “no, you’re done, see you in three months” which struck me as odd, but a lot of how the practice of medicine is done strikes me as odd.

So I went, gave some blood and got the results back in the mail yesterday and well, I hate to say it, but all I can say is holy shit, they didn't look good, they were not what I was expecting. Levels are high, levels are low, but most glaringly, my Ferritin level, which is the amount of iron in my blood is off the charts. I’ve been googling like crazy and what I’ve learned is that high iron levels are called Hemochromatosis. There are two kinds of this condition, Hereditary and Acquired. Hereditary, as you would assume, is caused by a defective gene and these folks keep their iron level down by essentially, regular blood letting. They get a jug of blood drained out every few weeks or months to get rid of the excess iron, excess iron is dangerous, it can kill you. The other kind of Hemochromatosis is caused by an underlying condition or very often {most often} caused by having excessive blood transfusions. I had six transfusions within a three month period, not so very long ago, so which do you think I have? No brainer, right? Sorry, not if you’re my oncologist, I was told through the nurse intermediary because god forbid he actually gets on the phone with me, that he wants to run the gene test because he suspects I have Hereditary Hemochromatosis despite there being absolutely no instances of it in my family and I’ve had not only normal, but low iron in the past and I had six blood transfusions, I know I’m not a doctor, but please! Regardless of cause, I'm a heavy metal chic for the first time ever... literally, and yes, I might do a little head banging, albeit, up against a wall.

So while I’m reading that Hemochromatosis causes organ damage, heart failure and all sorts of other undesirable things when left untreated and my levels are definitely in the need-treatment-zone, I am expected to wait a month until my genetic tests come back before we discuss it. Are you screaming in your head too? My glucose was also high and do you want to know what cancer likes? What cancer’s favorite tasty treat to snack on and thrive is? Sugar and Iron. I’m starting to think I need more than tranquil green grass. I Might have to arm that grass with laser guns or poison darts.

I have loved, loved, loved every minute of my parole, but I know what’s coming, tests, biopsies, mysteries, another odyssey through the medical industrial complex, chewed up and spit out. I felt so healthy before opening that envelope, but now my liver hurts, my heart hurts, I know it’s psychosomatic and yes, I knew that cancer treatment is not benign, but I’ve got to admit to being mightily disappointed in, and surprised by this development. I was much enjoying my recent trajectory and most definitely did not want to veer off back in the direction of hospitals and terror, I was feeling more and more optimistic the further away I got. Yeah, yeah, I’ll be a good sport, but do I keep having to develop the maladies that require abstinence from alcohol? Because I could use a drink or two, three, four, five.

Monday, December 3, 2012

Best Ever

Well gosh darn it, I had the best birthday ever, and having turned 49, I’m entering the last year of my first half century. I have a completely different perspective on getting older these days, I can’t think of anything better than living to be old. Every year is a gift and an accomplishment. I celebrated my birthday for a good four days. Things began well on the actual day, with an unexpected card slid under my studio door. That night big stayed home to watch little so I could go out. I went with friends to the Craftland Holiday Party, so much fun and then for a lovely dinner. I, who am camera shy actually forced other people to have their picture taken with me.

Next day, while I was at work, the guys cleaned up the house, they actually did, I am a witness. Vacuuming happened, trash went out, books and things went back to rooms, the kitchen floor even got swept. My son’s friend-who-is-a-girl picked up my giant “happy birthday to ME” cake because she is swell, and by 5p.m. the house was festive, happy and swimming with friends, wine and food. One of the nicest nights I’ve ever had, and the first time in a long time, I’ve had a house full of people. After everyone left, the girl, my two boys and their new older brother a.k.a. the tenant and I watched a Saturday Night Live Holiday Special and laughed like mad and I danced in my head, because my feet were too tired.

This is going to be a good year!

Wednesday, November 28, 2012

Dope Slap

I’ve been cancer-free now for a few weeks and well, it was just too dull. I missed the doctor’s, I missed hospitals, I missed getting jabbed with needles that really hurt, and so I devised a cunning plan to stab myself three times, simultaneously in the same hand and to bleed as much as possible. No easy feat... I’m not sure how this was actually possible, but since replaying it in my mind trying to figure out the chain of actions and reactions makes me queasy, I’ll leave it a mystery. However, it seems that if you combine chemo-brain {poor decision making abilities}, brand new, very sharp paring knife from IKEA and a bag of chestnuts, you get emergency room, puncture wound in palm, stitches in thumb, lot’s of bandages and a tetanus shot. I am now officially a drama queen, reluctant, but none the less, I think I qualify.

I’ve been wholly infatuated with roasted chestnuts the past few weeks. I bought some at the farmer’s market recently and scored them with an X on top, roasted the little angels in the oven and then sprinkled with sea salt, and accompanied by a couple of juicy clementine's they were intoxicating. When you roast them, the X opens up making a little pouch that you just peel away, they’re gorgeous, the perfect snack -- aesthetically pleasing, delicious and nutritious.

A few years ago, when I had a working fireplace I tried to roast chestnuts by wrapping them in foil and tossing them in the fire. I didn’t know you had to score them first to avoid launching a volley of flaming projectiles. One by one they exploded, sounding like gunfire, and shot across the room taking refuge under the couch. There were no casualties, but not everyone was amused and burnt carpet doesn’t smell good.

I was at Stop & Shop the other day and was thrilled to see an overflowing bin of chestnuts so I stocked up. They were harder to slice this time and the very minute I thought “girl, you are gonna cut yourself,” I cut myself, duh.

Yet again, disabled, I’m taking a few days off of work to holiday shop which I didn’t get to do last year because I was already so sick from chemo. My hair fell out a couple of days after Christmas. I wandered aimlessly around target today, tomorrow I’m going to the mall, I need to ogle some Apple products and buy some presents. On Saturday, I’m throwing myself a Birthday BINGO party which the boys are really excited about and that makes me happy beyond words. The tall one keeps offering to help {!} and they both have lot’s of suggestions for the guest list which I think is sweet as can be. I’m not used to celebrating my birthday because in years past I left it to someone who wasn’t interested and last year I had chemo on my birthday and so a party this year, the last of my forties, seems necessary. I want my kids to learn how to celebrate. Celebrate well and celebrate often.

Saturday, November 24, 2012


It’s a fine line between informative and narcissist, as it is between observant and redundant. Straddling that line is tricky business especially when your memory is shot. None the less, here I am, blogging again.

I was driving up to Vermont on Thanksgiving morning enjoying the scenery, and the autonomy of driving myself and my dozing boys to the place of our choice in Sparky, our safe and comfy new car. I was feeling really grateful, and powerful for getting us packed and out and on our way. I used to be the passenger and now I’m the driver. I don’t know what the heck we packed, but we all had socks and underwear and really, everything else is optional, right? I had my iPod loaded with occasion appropriate music, Alice’s Restaurant and Pete Seeger’s This Land is Your Land. I was writing blog posts in my head about my gratitude and they were poignant and elegant, uplifting and you’ll have to take my word on that as those words are long gone. My brain is still a sketchy thing, it doesn’t retain information for long. J is always asking if I remember this or that and I don’t... I really don’t, even though it was something we did or talked about only weeks or months ago. This unsettles him, so now I pretend -- I know, honey, that was so funny, I could never forget that.

It’s so much easier to be positive and optimistic when you’re feeling better, which is a good feeling, but maybe a trap. There’s a woman named Laurie Cordeiro from Bristol, RI who was diagnosed with Triple Negative Breast Cancer 2-3 years ago. I don’t know her but I know several people who do {or sadly, did}, and so our common cancer and those six degrees of separation make her seem real {as of course she is} and personal to me. She went through the same treatment as I did at the same age and after her year in hell, she had a year or so of triumph and optimism and took a job at Gloria Gemma Breast Cancer Foundation, helping other patients and families and then her cancer returned and I got an email in tribute to her yesterday speaking of her death a few days ago. It’s hard not to wonder how many green smoothies she drank and how often she exercised. She makes all those statistics turn flashing neon, the statistics I’m trying so hard to stay away from.

Her death makes me realize that you never get out of Cancertown because while you were there, you’ve met so many, heard so many stories, and our outcomes will all be different. The lovely Kim I met at radiation, lost her husband and soul-mate a few weeks ago to Multiple Myeloma and there was nobody more optimistic than they were, he was barely 40. Once you visit Cancertown you experience more death than you’ve ever known, even if it’s not your own, it affects you surely. You lose your innocence in so many ways. You have more joy but it comes with corresponding sadness. You have to live every day like it’s your last and plan for the future at the same time. Reconcile that dichotomy. I suppose that’s what we all should aim for our whole lives, but cancer makes it imperative. Little boy has been telling me all weekend how grateful he is for me and we’ve been having such a nice time together and I can’t imagine how he would react if given the bad news I can’t speak or write and try not to think about. He’d look at me with those great big beautiful eyes and say “but what would I do without you? who would take care of me? who would understand me?” It’s unfathomable to me, unthinkable, it’s an experience I could not bear, but we don’t get a choice, do we? I don't like that... I like to have a choice, we get used to excessive choices in our lives, but when it comes down to it, we don't have a choice at all... it's almost a foreign concept... I guess we deceive ourselves with all these small choices. Some children lose their parents, they do, they really do. Oh please, oh please, oh please, let that not happen to mine. If I didn’t have kids, I really think I could be graceful and philosophical about dying young. I wouldn’t like it, but I would go quietly. But I have kids, kid’s that without a shadow of a doubt count on me more than anyone else and who are loved so purely and without reservation in a way that could not be compensated for by any one any where and so leaving is just not an option. Just not an option!

How does one incorporate all this knowledge and foreshadowing into a happy life? I don’t know, but you do, you have to, somehow. You have to learn how to live without thinking I suppose, just forge ahead with blinders on and leafy greens in the fridge.

We're leaving Vermont later this afternoon, have had a lovely time, but I'm resentful for the undercurrent of reality and loss that has followed me here. Was feeling almost carefree last week, so aiming for that again, footloose and fancy free and the stamina to drive home. Grateful and thankful as we’re zipping through the green mountains.

Monday, November 12, 2012

Cork Pop

I’ve been meaning to post for days. I’ve written posts in my head, none of them terribly compelling, but not sat down to write them, because i’ve been really busy and it occurred to me that real life should take precedence.

I got my shop opened and it looks beautiful! Each and every one of my consignee's is a lovely and talented person, many of whom I’ve come to count as friends and the new one’s have been dreamboats to work with. I had a grand re-opening party which was fun and then I was getting ready for Craftopia which is a large event I host {with two lovely partners} twice a year. It’s stressful and always crazy busy as the event gets closer.

I had a bottle of champagne sitting in my studio mini-fridge, kindly given by an unlikely source at my re-opening party, but I didn’t open it. It was a really good night, but I wasn’t feeling celebratory enough, there just wasn’t the right moment.

Craftopia was yesterday, I’m so tired I can barely walk, but while exhausted, I’m content. It was the best event we’ve put on yet. We got a crazy amount of media attention, we were on the morning news, featured in the Providence Journal and in every local paper, we have built something from nothing and to me, that is a beautiful thing and incredibly rewarding. I remember how hard it was, the first few shows to even get a simple listing and now we are routinely featured and reporters actually call me. We were on the morning t.v. news, how nutty is that? We were jam-packed from the minute we opened the door to when they closed. Set-up was a breeze because we have the best vendors and I love when customer’s tell me how cohesive the event feels. High quality, with a distinct feel, YES, that’s the plan, it is a carefully curated event and I love that people notice that!

My beleaguered, neglected business is off to a good start. My posse of teenaged boys got themselves up at 7a.m. and came to help and their good nature and dependability touches me deeply. These boys I’ve watched grow almost into men. My son, of the larger variety, and his friend-who-is-a-girl and our tenant, turned housemate, turned member of the family worked the front entry table all day and they did a great job and had a blast. I always wanted a big family. I could tell my son was really proud of me, lot’s of high fives and even a great big hug as he departed which is a rare and special thing.

As vendors started the long process of packing up, I had my cork-worthy moment. This was the first week in such a long time where I felt better every day instead of worse. While I have a calendar full of follow-up appointments, there are no procedures scheduled, no ghastly new treatments to begin and it had been a great, great, successful day. So I popped my cork, grabbed a bunch of cups and visited as many of my favorite crafty peeps as I could and said “take a cup, we’re toasting to ME, and my upward trajectory.” And finally, I could hug without being in pain and I could kiss without being immuno-suppressed and fearing germ exchanges. I had my perfect moment. My bottle ran out way too soon and before I knew it I was laying on the couch of my comfortable, familiar, friendly house feeling like this day had been a turning point. Truly, the beginning of my upward trajectory. Without constant medical appointments, I can finally establish a new routine, join the living instead of the dying. That is my choice, to live every day instead of dying every day. Today I could go into work and start cleaning up or I could leave that until tomorrow and bundle up and spend the day in my yard cutting back plants and enjoying the fresh air and my sweet, sweet neighborhood. So that’s what I will do. I will slow down and smell the proverbial roses and start my new life, or at least the newest chapter in my old life, which most mercifully, is a LIFE.

I don’t know if I’m ready to give up the blog completely, as it’s become such a presence in my life and so many people have asked me not too {which is so powerfully meaningful to me}. The downside of the blog is that so many people know me a hell of a lot better than I know them and you see, I want to know you too. I want to live a real life and not a virtual one. It would be easy to keep hiding in my cancer-cave, worrying and having people want to help me... but most essentially, that doesn’t suit me. The blog kept me connected to the world when I couldn’t leave my house, when I couldn’t partake of it myself, but it suddenly occurs to me that now is the time to make oh so many changes. I think I was waiting for that “cork-popping” moment and it has now presented itself. Life is short and you only get one, I most certainly know that, if nothing else. I want to be present in my actual life instead of always thinking about what I’m going to post. I’ve begun to continually write blog posts in my head and I think it would be better to be spinning other tales, be more present in the immediate instead of recapping the past.

I’ll post to the blog every now and again to let you know how I’m doing, so you don’t worry, but I’m going to place living over writing. It’s time to give my blog the big hug it deserves, it kept me going, kept me sane and connected through a dark and difficult time, so I’ll honor it by not letting it be a crutch, not let it keep me from living. I know I have a lot of work to do, I can barely walk a couple of blocks, I have to reorganize my life in a way that takes care of myself and not just other people, but I'm feeling confident that it will get done.

I’ll keep writing, I’ve discovered how much I love to write, but I’ll be posting, much {much} less frequently. Thank you so, so, so much for reading and for keeping me going. I will never forget or cease to appreciate all the folks who kept me company by reading the blog, or all the folks that fed us {literally} and who’s love and attention kept my precious little family going. Your attention and kindness has affected my boys {and me} in the most beautiful way, you have changed lives. Thank you, thank you, and let’s see each other in the real world, not just the virtual one. x o k t c

Wednesday, October 31, 2012

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.

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.

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.

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.

Saturday, October 20, 2012


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.

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!

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.

Monday, October 8, 2012


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.

Thursday, October 4, 2012

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.

Wednesday, October 3, 2012

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.

Tuesday, October 2, 2012

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.

Monday, October 1, 2012

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.

Sunday, September 30, 2012

Bacon Cancer

A weekend of napping has done me good and I’m grateful to all who’ve stepped up to help after my little on-blog nervous breakdown. I’m looking forward to getting lots done this week. Never a dull moment, I’m starting to get sore from radiation and the expensive radiation burn cream I mail ordered may or may not be the cause of the itchy, bumpy, yucky rash on my chest. I don’t think it’s from the radiation... they’re not doing that area and it shouldn’t cause a rash, but I’ll see the radiologist on Tuesday.

I keep chuckling about the best part of going for coffee with my rads girls, the lovely women I met in the radiation wating room. We gabbed like crazy because my god, there are some things you just can’t talk about with anyone and it’s so good to hear about other people’s experience in this surreal dimension in which we dwell. I don’t know if “good” is the word, or “cathartic” or “beneficial”, it’s just desirable, I suppose, and helpful in intangible ways. We jumped maniacially from one topic to the next, two of us did shots of wheatgrass juice, yes, I’m reduced to green shots now. We talked about diet and what we could eat during chemo {varied widely}, foods we like but don’t eat anymore or don’t like anymore, dry mouth and dead taste buds and one woman, I can’t remember the context in which this came up, mentioned that she doesn’t like bacon, never really has.

One innoculous statement can change your life, because there’s been a little part of me that was convinced I’d given myself bacon cancer. Bacon is my favorite really-bad-for-you food. If I go out to breakfast, I get bacon and eggs, my favorite comfort meal is pasta with bacon and sundried tomatoes, sure it’s great with olives instead of bacon, but bacon is the king of tasty treats. And sure, I’m well aware of how bad it is for you... pork some say is a cancer culprit, and animal fat, chemicals, all those nitrates... So I’ve been feeling guilty about every piece of bacon I’ve ever eaten in my life, but no more... because Ms. X has TNBC and doesn’t eat bacon. Phew, what a relief. I know at this point it’s to be avoided, but I will still eat occassional bacon without feeling I’m committing suicide. Life is indeed short and sometimes it needs vermicelli with bacon.

Wednesday, September 26, 2012


I tried to help little boy with his math homework, the other night, word problems, does anyone not despise word problems? It’s funny how we don’t notice things until they’re gone. You notice the absence of a building just razed when you see the empty lot, but can’t recall what was there even though you knew it well enough to notice spot on that it was gone. The moment someone paints their house, you can’t remember what color it used to be even though you’ve passed it a thousand times. I read the question, once, twice, again and again but the little elfs in my brain that prompt cognition, that sift through the files for the applicable flash cards just weren’t there. No organized thoughts, no clues on how to proceed, I might as well have been reading Russian, I was acutely aware that whatever process that used to take place, wasn’t happening. I don’t recall exactly what used to happen... but it sure isn’t happening now. For the life of me, I couldn’t do sixth grade math. My mind is blank when I need it to do something specific, and when I want it to be calm it spins with worry and will not stop.

This morning the cleaning lady showed up unexpectedly, I thought it was next week, so the place was a mess and no time to pick up. No school today, yom kippur, everyone was sleeping but me because I needed to eat, shower and go get microwaved. Our new tenant and family member and J got up, I gave them cereal and strawberries. It must be terribly hard to move in with a family and make yourself at home with a shared kitchen. So now I'm worrying about 3 people eating instead of 2... and I'm worrying about my undone taxes because it's almost a new year and the thought of having simultaneous piles of paper to sort is really too much... and I'm worrying about Craftopia in November and the email telling me that my recently submitted Ad was the wrong size and none of the food trucks are calling me back, and I'm worrying about the shop and will vendors bring me promised merch... too many are not returning emails, I don’t want to be a pest, but I’m pestering and it’s not even working... and I need to build a wall in the studio for the store... and I have a meeting at noon, and Ex is also picking up the kids at noon... and my grill is out of gas and no one is placing wholesale orders and there’s too much cancer in the news, and, and, and... and, I'm sleepy, just god awfully sleepy... I got myself so stressed thinking about all of this that while in the shower my whole body started to itch it was the weirdest, most awful sensation. I need a drink, seriously, I need a fucking drink. The neuropathy in my feet isn’t going away and I can’t find any comfortable shoes, my feet do not want to be in shoes, it makes them scream. And there are all the phone calls I need to make and arrangements for document transfers for my appt. at MGH in Nov., and November is getting closer and who's going to go with me? too much thinking, too much worrying, and Jonah still can't remember his multiplication tables and everyone has too much homework... and I need to refinance the house, but who the heck has the best rates?

And I’m god damned sick of sticking out like a sore thumb. My hair will grow back eventually, but I’m sick tired of waiting and looking like a freaky clown. And the rest of me isn’t going to grow back, I’m so covered in scars and divets I’m starting to feel at the point of no return and really, there is no return, so maybe that’s just the sound of my denial cracking.

Life just feels too complicated, too chaotic, I can’t figure out how people manage, there’s always too much to do and I can’t even seem to get my laundry put away. One step forward, two steps back. I’m heading towards the precipice and backing into it at the same time. I’m doing the exact opposite of creating an environment that is not conducive to cancer but I don’t seem to know how to do otherwise. I feel like my whole life has been conducive to cancer. I just can’t figure out how to live and make it work or maybe I just can’t remember.

Monday, September 24, 2012

Wake Up

I took a carload of boys to a wake tonight, one of their football team member's dad was accidentally electrocuted, he was 50. I found out about it at the game on Saturday, it’s been creeping under my skin ever since. I never met the man, but word of death is jarring. They had a moment of silence before the game and I thought, that could be me and I don’t want a moment of silence, god damn it, I want an hour of silence, a day, a month a year and at the same time I don’t want anyone to be sad because that makes me sad. There’s no connection between this sudden death and the death I fear, but it’s got me on edge, seeping in the cracks. Going to the wake didn’t help, especially combined with my fatigue and my inability to get to the grocery store or feed anyone properly, it all adds up to overwhelmed. It’s almost october and I still can’t get my taxes done and soon there will be a new year’s worth of paper to sort and I’m not sure I can dig myself out. And then there’s the studio, the business, the wreckage of that needing to be resurrected which seemed possible a few weeks ago, but my daily stint in the microwave is making my head bobble with fatigue.

I’ve taken in a boarder, he moved in yesterday, I’ve toyed with the idea for quite some time. Our third floor dweller is a sweet and gentle, 27-year old, dreadlocked man who is Jonah’s improv teacher. He’s been on his own, I believe, since he was a teen and crashed at this place and that. A recent breakup left him once again with no address and I have empty rooms in my attic to trade for yard work, childcare and a nominal rent all of which I desperately need. G was very upset at first notice, and I was worried, but last night they bonded over televised football. J and I sitting in bed upstairs, were amused to hear them laughing and howling nonstop and J gave me a thumbs up and said “I think everything is going to be fine.” I threw in “the more the merrier right?”, and he said “so true, so true.”

So now I think I’m the only one having trouble. Already it’s been helpful, having him here, I was able to go to this wake tonight leaving J home in good hands, sans the stress of figuring where to take him while we went, and wondering if I’m imposing and worrying because it’s a school night. Instead they were happily plotting chinese take-out when we got home and took off for a walk to get it and then sat in the kitchen chatting it up with their szechwan chicken wings and rice. For someone with no extended family nearby or childcare help, ever... it’s an amazing thing for someone to relieve me of that for an hour or two, countered unfortunately, by the stress of having someone in my house.

This house has been my sanctuary and I’ve allowed my perimeters to be breached. But I guess we do what we need to to get by. So far it feels really strange and awkward, and so it turns out I’m the one least able to handle change. I’m feeling less adventurous today than I did yesterday, even less so tonight than I did this morning.

Thursday, September 20, 2012

No Reason

So long eyebrows, sheesh, just when I think I’m done shedding. Cancer provides one with so many new experiences and much new knowledge, like what it feels like to be without eyelashes and what myriad purposes those little buggers were fulfilling, all while you didn't notice. When I blink, I feel like I’m over-blinking... that without the lashes as stoppers, my top lid droops a tiny bit over the bottom causing a slight burning sensation and tearing. Who knew? It’s quite unpleasant. Just as my head was paler than my face, being used to being sheathed in sun-protective hair, so too is the place where my eyebrows were, making me look somehow in reverse, a negative, 35mm.

I really lucked out with my 9:30 radiation time. My appointment is sandwiched between two lovely women who are similar in age to me {o.k.,I admit, a little younger} and have, not only the same type of cancer as I do, but the same oncologist. They see him at a different hospital which is perhaps why our paths never crossed. We all have the same first initial and are having coffee next week to talk about things like eyelashes falling out and oncology gossip. Anyone who says things happen for a reason can fling themselves on the nearest sword because one of these women, who seems so gentle and kind was diagnosed right after having her second child. So while she was supposed to be revelling in that lovely, new baby time, she finds out she has cancer and starts chemo. The other is a feisty, firecracker with kids both 9 and 11 and a husband who’d been battling Multiple Myeloma, a very serious, bone marrow cancer for several years, when she was also diagnosed with cancer. That shit don’t happen for a reason. He’s currently taken a turn for the worse and she’s trekking to radiation every day and then going to see him in the hospital and then home to the kids. No sir, no reason for that!

Monday, September 17, 2012

Wall to Wall

What the hell? I’ve been out of chemo for weeks and today all of my eyelashes fell out. They felt really itchy and when I rubbed my eyes, all of my lashes fell out and they’re still itchy, but now they’re naked too. I’m only one week into radiation and I’m having a devil of a time getting out of bed in the morning and today I konked out in the afternoon for two hours just after promising to do something fun with J. I’m no fun.

I had a really productive week in the studio, it was lovely, and I have two boxes of merch packed and ready to go. I don’t want to have my newfound energy radiation sapped, but I guess I have no choice, so I’m trying to get as much done as I can as quickly as possible.

October is always really hectic for me because I’m getting the store together and preparing for Craftopia. I worry about whether the people who have promised me work will come through and this year I’m expanding so what goes where and how do I partition off from the studio? I need a half wall and someone offered to build me one and I said “oh no, that’s way to much to ask”. And then I realized what an idiot I am, because I didn’t ask, they offered, unbelievably generously offered, so I might track them down and well, I can’t batt my eyelashes at them, but I will ask if they’re still willing.

Saturday, September 15, 2012


My whole week is generally consumed with making lists of all the things I need to get done over the weekend, the things I’m going to stop putting off. Residents of the list weigh heavily on me and then come saturday, my mind’s tabula rasa and I can’t think of what I needed to do which is why the list gets longer every week. I write lists, of course, but then I loose them, they go to the place where sock mates go. I bought a refrigerator applique that one can make lists on with dry erase markers, which was working great until my marker dried out and I keep forgetting to buy a new one despite how many times I’ve been to Staples, I’m sure it’s on one of my lists.

This morning I couldn’t get up. Little boy spent an hour intermittently trying to rouse me, but I felt drugged, I could barely open my eyes. Finally at 9:30 his father came to pick him up, it’s his weekend. This is why I wish his weekends started on Friday night because then I could’ve spent an hour sleeping instead of an hour wracked with guilt trying to get up. And if his weekends started on Friday night, they’d end on Sunday evening instead of Monday morning and the tall one would be home to drag out the heavy trash cans for pick up. It would be a small and quite logical shift, but I can’t seem to facilitate it happening, I am a poor negotiator. I have this irrational notion that when you have cancer, you shouldn’t have to drag heavy trash cans around. I think Susan G. Koman should spend less time worrying about pink ribbons and more time worrying about my trash cans. And I should spend more time eating healthy and making green smoothies because with the return of my appetite, I’ve been slacking.

After breakfast I did the dishes clad in rubber gloves as always and I felt a sharp stab in my pinky. I pulled off the gloves and an ugly black spider slid right out and down the drain after apparently biting me. There aren’t poisonous spiders in Rhode Island, are there?

My precious free day and I don’t think I’m off to a good start. My kids have monday and Tuesday off, I got out my calendar and counted... they don’t have a full week of school until week #8, how insane is that? How do people with full time job’s manage? I guess they build an infrastructure that can handle it, babysitter's on call... I am lacking an infrastructure.

Thursday, September 13, 2012

Three Down

Fuck the saran wrap, fuck the gauze and the tape and the wild machinations just to shower. It’s so easy for a hospital crew to tell you not to shower for eleven days, but real world, just not tenable. Thanks to Al Gore and that wonderful world wide web of internets, my research concludes that it’s important to keep the incision from this type of procedure dry for 48 hours, then one may feel free to remove bandages, and the “steristrips” placed by the surgeon {fancy looking tape} will come loose on their own over the next week, and then you’re all set, bravo! The dissolvable stitches {my nemeses} are subcutaneous and the surface of the incision is glued closed and can get wet and breathe fine, fresh air after said steristrips have fallen off.

I finally had my first radiation the other day and I’m finding the whole experience disorienting, depressing and dehumanizing, triple D, it’s easy to forget that these people are trying to help me. It feels from a Margaret Atwood novel, we get an ID card with barcode and scan ourselves in, then change into our assigned starchy johnny, I’m #33, I retrieve it and return it to a cubby on the wall and it’s washed {I’m told} once per week. My johnny is ill-fitting and drags on the ground, but after stowing my clothes in the cubby I emerge in the next waiting room where at least there are trashy magazines. On Mondays there will be blood drawn and on Tuesdays, I’ll meet with the doctor, and Monday through Friday, I’ll wait until they fetch me to go into the cold room and lie on the cold table. I’ll raise my right arm over my head and lay still while they adjust me and finally zap me a few times with a machine that is disturbingly low tech in appearance. It looks like an amateur inventor put it together in their basement or was ingeniously constructed from spare parts a la Dr. Who. On the first day they gave me two small samples of Aquafor to put on my skin along with a coupon for a dollar off a future purchase, thank you medical/pharmaceutical industrial complex. No one mentioned that there is actual radiation burn cream one can purchase on-line which may do a better job, this is why cancer patients need to stick together just like new moms, because there is so much the books and the professionals don’t/won’t tell us. The actual patients, I think, are so often an afterthought.

I’m feeling battered and bruised {literally}, my incision hurts and I’m surprised that the radiation area is already a little sore. Three down, thirty to go. I finally had to put my beloved messenger bag away, there were just no shoulders left to carry it on comfortably. Luckily I had a posh fuscia leather bag with a handle in my closet made by Holly Aiken in North Carolina, a fab internet find. But as I’ve mentioned her I must give a shout out to my favorite local messenger bag makers, Little Man Originals and Red Staggerwing Designs.

It’s a beautiful day today. I got into the studio, I finally got to the grocery store and little boy is happily ensconsed back at improv class. I hope more kids show up next week or there might not be an improv class to go to, and that would be worse than giving up my messenger bag.

Monday, September 10, 2012

No Boobs, No Balance

I forgot to mention that while at the aquarium yesterday, I held the door open for some folks leaving the penguin house and one of them was wearing my earrings! I have to admit, it's always a thrill to see someone wearing my jewelry where I least expect to.

I'm still a radiation virgin. It turned out my first zap is tomorrow, today was more x-rays and blood work. More laying on a table half naked in a freezing cold room, like a piece of meat while people push and pull to arrange me just so. Lots of waiting and not moving and technicians bustling about, drawing on me with markers, and taking pictures. The rooms with the fancy machines are always freezing because it seems the machine's need it so, we are mere accessories so the machines and everyone else have something to do. I know that's not true, but that's how it feels, western medicine is very dehumanizing, they treat everything but our brain and as informed as I try to keep myself, I often have no idea what the hell is going on... how the system works. As fidgety a person as I am, I've mastered becoming a statue, I leave my body, and barely even remember being there.

In the changing room, I met a woman who also had triple neg. and who has two young kids and who's husband is in the hospital because he's been fighting some sort of leukemia for a few years. Unequal distribution of misery. I felt really badly for her. She has the appointment right before mine every day, so it will be interesting to compare treatment notes.

I'm exhausted from the weekend, truly and utterly and today I had to drive an hour and be on my feet for a couple of hours and my feet were screaming. My balance was terrible, I'd just be standing there and then suddenly loose balance like someone bumped into me, but no one there. It happened a lot yesterday too, no likey. I think this definitely rules out the full-time job at McDonald's opposing counsel suggested in early divorce negotiations. The boobs ain't coming back, I hope the balance and working feet do... and the vision... and the energy, this could be a long list and little boy is waiting for popcorn and Dr. Who.

Sunday, September 9, 2012

Train Tracks

I had a really nice weekend, I forced myself to get out and about, as enough is enough with this shut-in thing. I went to G's football game on Friday night and while he played well, they got creamed by a team in a lower division, which makes me nervous for the rest of the season with even bigger, stronger, faster opponents. There were a couple of late hits on him and they made me furious, I wanted to go out on the field and scream at people, kick them in the leg. It is horrible, watching your baby get knocked down, knocked down on purpose, oh, why not tennis? When he got home, his arms were all scraped up and raw and bloody, ewwww.

On Sat., J had a friend over to help him make a movie he's been planning for weeks -- for some reason, he got it in his head to make a silent movie, "old fashioned looking". They did a great job, I have to say, I love the part where his friend is tied up on the ground as if on a train track and there's a close up of the train coming and then a wide shot that shows the tiny little Brio train approaching . Tighter editing would be nice, but I keep it zipped, he's so proud of his movies, as it should be! We stayed up way too late as usual, J editing and G and I watching some of the convention speeches.

Today, J and I and friends went down to the Mystic Aquarium, it was really fun, but exhausting. I wore sneakers for the first time, it's been flip flops for my beleaguered feet all summer. The sneakers made me more aware of how numb my feet are and I'm finding that when it's dark, I have little balance, I look drunk. By the end of the day, I was just plain in pain, I don't know what kind of shoes to get for winter. I fall off my dansko's, I think I need to be really close to the ground. It was so nice to finally go on an adventure with J who kept holding my hands and raving on and on about how much he loves sea creatures and at one point he was so happy, he had to give each of us a hug. And yeah, then we all got the speech again about how hugs are healthy for you... endorphins, you know?

Tomorrow is my first radiation, yet another odyssey begins. Five days a week for 7 weeks, oh boy, can't wait. What's really abnormal is how normal it seems, I'm really not sure what I'll do when I'm finally out of treatment, it will feel as strange as getting diagnosed in the first place which really seems like years and years ago, as opposed to the 10 months it's been. It's hard to imagine my former life and kind of wish I'd realized how simple it really was.

Wednesday, September 5, 2012

News Flash

Ah, last day shuttling about in the old jalopy, I had to laugh when the "check engine" light came on... and stayed on, that warning will stalk me no longer.

I'm more sore today than I'd expected, the incision is right where the seatbelt comes across and where I carry my over-stuffed messenger bag. I hope it heals quickly, but now that I'm not a super-healer anymore, who knows. I do know that advil is my friend.

I haven't watched any of the Democratic Convention yet, I taped it and went to bed, but G woke me up at around 11 to say "Michelle Obama was amazing!" I don't mind being woken up for that news flash.

Tuesday, September 4, 2012


What do you do when your friendly neighborhood middle school librarian sends you an unexpected email telling you she loves researching and buying cars? You say, yahoo, let’s go. We drove a Toyota, Honda, 2 different Kia’s and a Suburu, and armed with her consumer reports, experience and advice, I got a great deal on a Toyota. Yep, a brand new, pretty, shiny Toyota Rav4. So you wind up with a new car and a new friend. I didn’t expect to buy a new car, I’d totally talked myself into used and made peace with it, but the savings on a used car just wasn't enough to make it worthwhile. And as the year is almost through, I wound up with a better deal on a new car, than some dealers were offering on a used. I’m giddy with excitement, and can’t wait to pick her up on Thursday. I figure anything that makes me giddy right now is worth the expense and as I don’t generally crave material items, I went for it. I’ve been longing for, craving, fantasizing about having a new car for years and after driving my poor second hand van for 11 years and to the bitter end, I am well past excited about my new baby.

Today I had my port-removal surgery. Everything went smoothly, but I’ll admit to being tired of these procedures and feeling like a piece of meat on a table. The drugs were great, I was in a very relaxed place but never fell entirely asleep. I heard the staff talking about where they buy appliances from underneath the drape that was covering my head, as if I was in a tent that had collapsed. They told me not to shower until I come back for a follow up in two weeks, which I'm interpreting as, no worries, shower in the morning as usual. I came home and passed out into many hours of sleep while J spent the afternoon next door and G was at practice. Pizza delivery for dinner and looking forward to getting my pumpkin head back into bed.

I start radiation next week, so there really is little rest for the weary. I got a good time though, 9:30 a.m., not everyone is so lucky. I can finally get into a routine of kids off to school, breakfast, shower, radiation, studio, home for lunch and J return.

Somewhere in there, I’ve really got to get to my taxes and catch up on other areas of neglect. Mostly, I need to go somewhere fun this weekend in my new car!

Thursday, August 30, 2012


I’m having such a bad day. I went in for my get-processed-for-radiation appointment and was immediately disconcerted because I know I was there a few weeks ago for a consult and yet nothing seemed familiar to me. I’d swear I’ve never been there before, but I know that I have.

They left me waiting for a whole hour which gets me really tense and annoyed because I feel like I have so little time, I don’t want it wasted. The process entails getting out of your clothes and into a hospital robe and then laying in a freezing cold room in an MRI machine until they get you positioned just right, I'm experienced, I wore socks. They molded something to my head for future sessions, drew all over me with pen and marker and finally tattooed 5 black dots on me which hurt like hell and I’ve had tattoos before. I was complimented on my ability to be a "statue" for so long, a skill I've acquired this past year. While I understand that everyone is just doing their jobs and they couldn’t have been nicer and this is all for my own good those tattoo’s make me feel violated. I’m fair skinned, they’re noticeable and they sent me out to change while I was still bleeding. Now I have these ugly marks on me, visible above the neckline, I don’t care how tiny, it just feels like one physical indignity too many.

I came home and showered and tried to wash the pen drawings off me as best I could and I went to the grocery store. On the way home I felt overcome, I wanted to lay in a fetal position and moan, wail, scream, I don’t know what. It was all I could do to get the groceries in and put away.

Then I got a snarky email from the guidance counselor at J’s school rejecting my very polite pleas to have Jonah’s math class changed, even though she had previously inferred it would happen. At first I wanted them to switch him over to the other team entirely, but I was willing to settle for just getting him out of the math class with the really unimpressive teacher who makes him nervous and into a class on the other team because then, he’ll have the same math homework as his local friends and they can help him and they can sometimes do homework together which helps me out while I’m in treatment because I only have so much energy.

This email implied that I have no good reason for asking and that these switches are never done which is absolute bullshit. All the public schools here say this and then I hear of person after person who got their kid switched. Rule, sure, but can we say discretion? They always act like you're asking for outrageous favors, but I like to think I’m their client... it’s a public school and we are the public. They are supposed to engage me and negotiate in good faith, am I being unreasonable? I feel like my little family has special circumstances right now and it would be nice for our school to accommodate us by switching one single class so that my kid would have friends to help him with homework when I’m too sick or too tired to.

I wrote back a pretty direct email but refrained from asking them to imagine the headline “public school refuses to help out cancer mom.” I’m not hopeful, we’re just homogenous cogs in a great, big, giant wheel in a great, big, giant machine and us little people don’t get to steer.

Wednesday, August 29, 2012

Magic Dragon

I’m sitting on my porch, it’s a beautiful day, it’s 3:11 p.m. and middle school got out at 2:45. Little boy is walking home from school for the first time, it’s a long walk, I fear just a few blocks or more too long for those spindly little legs and a large, heavy backpack. I’m a nervous wreck waiting.

He’s walking home with the girl next door who is in eighth grade. They’ve known each other since she was two and he was born. The were thick as thieves for years and years. Bestie best friends with a touch of older sister in it for her. She knew him so well and is such a kind and sweet girl she put up with his volatility and was always patient when he had a, shall we say, moment. They used to play for ten hours straight, day after day, jabbering on a mile a minute, up to all kinds of crazy games, and mischief, almost speaking in their own language. I love this girl, she is the same age my daughter would have been and she occupies the same birth order in the family that I grew up as, middle child between older sister and younger brother, not the easiest spot. She’s always been special to me and their friendship was always beautiful and endlessly amusing to watch. Those two filled my house and my heart with happy sounds for years.

And then as she should, and anyone, including me would have predicted, she grew up when she hit middle school and they went their separate ways. She turned into a girl and a big kid and the little boy got left behind like Puff the Magic Dragon. But as she is the sweetest thing, a truly nice person, and still, I think, feels a little big sisterly, she offered to walk home with Jonah today because now they’re at the same school. I’m hoping they can get to know each other again as big kids, but that’s up to them. As for now, I’m just worrying... did they meet up at the front steps as planned? are the spindly legs holding up or cracked like twigs? Has the lack of eating lunch {because I’m sure he hasn't} caught up to him? I know he doesn’t know the way home by himself, is he lost?

Oh, oh, I hear them, they’re coming down the street yapping up a storm. All is well, they’re inside the house now eating creamsicles and talking about Dr. Who, J’s latest obsession and it turns out her’s as well. I can hear them talking a mile a minute, things change and some beautiful things stay the same. Welcome back Katie. She just told him she’s free to walk home with him tomorrow if he wants to, “sure” he says with a confident grin. I could cry, seriously, such a familiar sound those two and it's been a long time.

Tuesday, August 28, 2012

Double Blind

The past two nights I have slept, slept. I got in bed, turned out the lights and then it was morning, I’ve forgotten what this was like. I haven’t slept well in months, I’d stay up late for fear of going to bed and the hours tossing and turning and then one sleeping pill then another, only to sleep fitfully for one-hour increments. Then suddenly this morning I realized that I’d slept, that I don’t remember trying to sleep because it just happened, no sleeping pills, no angst, what a great, big, giant relief just to get an effortless nights sleep.

I’m hungry too, famished and that’s not so great. I’m still not at my ideal weight and those with my type of cancer fare better when there is no weight gain and they are at their optimal weight after treatment, so it’s not just a vanity thing, it’s imperative that I eat healthy and lose some more weight and certainly don’t gain any.

Which leads me to an interesting fact I just learned as I ponder joining a clinical trial. They have found that fewer type 2 diabetic women get certain cancers {including breast}, and fare much better after treatment, despite their weight and diet when they are on the diabetes drug Metformin. This drug has been around for ages and is inexpensive but seems to have anti-cancer properties, for reasons which I can’t intelligibly synopsize, I have more reading to do.

Apparently there’s quite a lot of evidence for this and it’s gotten to the double-blind study point which I could join. From reading on-line and looking at the Triple Negative Cancer chat boards, it seems a lot of people are taking the drug on their own by getting their primary care doctors to write the prescription which many will do for this off-label use, although I can’t imagine any of my copious doctors doing this. If I partake in the study there’s only a 50% chance I get the drug with the other option being in the placebo group. That’s a drawback, because if the drug works, I want the drug. On the positive side, if I get the placebo, I’m still doing something useful for future patients because somebody’s got to be in the study for it to become a legitimate treatment option. Here it is though, the big downside {because nothing it seems, is simple}... the drug has a pernicious side effect that’s very common. Some people’s bodies adjust in a month or two, some don’t and it’s, it’s... constant, sudden, painful diarrhea. Why, oh why? The other caveat is that you have to start within a year of diagnosis, so I’d have to enroll in November. I’d be willing to possibly suffer these symptoms {temporarily} for the greater good, but not in November, that’s too soon, that’s the holiday’s and last year I’d just started chemo, I felt like crap, I want to enjoy the holidays. I want to feel good for a while, I don’t want to be trapped inside my house, inside my bathroom, I’ve had just about enough of that.

So I’m really torn. I want to do it for so many reasons, including the fact that even if I get the placebo, which I’ll know due to lack of said nasty symptoms, I’ll get monitored more closely and that’s a good thing. Technically, no one, including your doctor knows if you’ve got the placebo or the real drug.

I have a few weeks to think about it and for now I’ll just dwell on the fact that my baby survived the first day of middle school, probably a lot better than I did. Watching my little person enter that massive building was surreal. He got into his locker no problem, erroneously wound up in the 7th grade lunch and sat in on the wrong class for a bit before realizing it, but was unfazed and in a fine if somewhat dazed mood when he got home. Phew.

Sunday, August 26, 2012


I feel like I haven’t been to the doctor’s {and by doctor’s, I mean medical place because I rarely see my actual doctor} in weeks. I feel free, untethered, it’s amazing and in actuality, it’s been five days. Glorious. So quickly we adapt to one routine or another and this routine of no routine if preferrable. Visiting the 4th floor of the hospital, the cancer floor, where people go to die, every saturday was always jarring and depressing and I would find myself ruminating on the glimpses of the people I saw there, for days, if not forever. I’d imagine myself in one of those rooms and that’s a place I really don’t want to be.

My son turns 17 today of which I’m in awe and disbelief and grateful for how much I just plain like him. He celebrated yesterday with friends and pizza and chocolate cake. He doesn’t like a fuss or singing of happy birthday but I made him blow out candles privately, because you have to have a wish on your birthday.

Because I trust him, after cake, J and I left the noisy teenagers and went to a yard party of our own, where amazingly, we lasted until midnight having a perfect good time. I drank, yes I did, not a lot, but a bit and champagne tasted lovely, and I laughed and I watched J running around in the dark with his little pack of conspirators being silly and free and I was happy. I asked J today, on a scale of one to 10 how good a time did you have and he said “20”. Yes, 20 for us both. This week, school starts and I have three appointments, oncologist, radiologist and dentist. In between, I hope for some normalcy. I’m hoping for a few weeks before I start the grind of radiation. The clock is ticking too on my business, it’s now or never, I need to begin the resurrection over there or I’m in trouble. I’m optimistic though, that it can be done.

Friday, August 24, 2012

Two Bishops

I’m obsessively checking my head for new hair. Checking, rechecking, checking again, all within a 10 minute span. I’ve been fine without hair, but all of a sudden I’m done with it, done. I know it will be years before it even hits my shoulders but I miss that feeling of brushing my hair and then pulling my fingers through it to gather into a ponytail. I’m having hair envy and I’m getting anxious for new growth, so naturally, I’m worrying that it won’t grow back. I went on-line and found a few outlyers chatting about how their hair came in so thinly, or configured like male pattern baldness that they’re still buzzing their heads a year later. Damn you outlyers, damn you internets making me crazy{er}.

Except that my baldness led me to a wonderful chance meeting yesterday. After a long day at middle school orientation, exhausting, but went great, J and I stopped into our local café for a cold beverage. While waiting on line, the woman behind me told me that she too had been bald once. We kept talking all the way to the island where you get your lids and straws and there was just something really special about her. She exuded calm and warmth, true sincerity and kindness, I was really drawn to her, she was the kind of person you remember despite such a minor encounter. I finally asked her name and she said Gerilyn Wolf and I yelped “you’re the bishop.” And indeed she was. The open-minded, progressive, lived among the homeless, Episcopal Bishop of Rhode Island. I just love that you never know who you’ll meet and when... usually when you least expect, I think. Plus, as we'd just come from Nathan Bishop School, that made for two bishops in one day.

Wednesday, August 22, 2012


Small one informed me tonight that plain paper wrappers on ice cream pops drive him crazy, he can’t stand them, they give him a “traumatic experience”. “A dramatic traumatic experience apparently” I said. “Good one” he nodded calmly before resuming his dramatic rendition of paper wrapper induced trauma. The tall one is mortally terrified of styrofoam. Wherever do I get such neurotic kids, oh my god an inchworm, ruuuuuuuuuun!

Yeah, it’s from me.

I’ve never been a hypochondriac though and I have known a few, so I know what they look like. What I mean is never been, up until now, because now, I feel a serious case brewing. I just started taking Claritin every day so that I can attribute my nagging cough to allergies and not lung cancer. Every ache is going to be bone cancer, every headache brain cancer. I’ll probably be discovering new cancers, fingernail cancer, belly-button cancer, I could win a Nobel Prize for one of these discoveries, that would be exciting.

The other day in the mirror I noticed a ridge on the side of my head which I didn’t recall, how could I have missed such an obvious cranial atribute? I figured maybe my undiagnosed brain tumor was getting so big it was changing the shape of my skull. I worried about it periodically for a few days and then tonight as I was leaving the bathroom I saw an even bigger ridge on the side of my head in the mirror, and a weird shape on top of my head and violá, I’m cured, it's a miracle, they were all from leaving my glasses perched on top of my head.

What do you do for hypochondria? Go to the doctor? They sent me away when I actually had cancer so what good are they to me now? I don’t know if there’s enough therapy or guided meditation in the world, certainly not in my world, oh, it’s not going to be pretty.

Tuesday, August 21, 2012


Oh my god, I want to scream! Media, what is wrong with you? This neanderthal Todd Akin is saying he just mispoke a single word and everyone is picking on him. I assume that to be the word “legitimate,” “legitimate rape” and every single commentator leaves it at that. What about the other words, the possibly even more ignorant and ridiculous words about women having a way to shut those things down. Follow up questions people, follow up!

While I’m on a rant may I just say, Diana Nyad, you’re awesome, you’re super awesome, you’re amazing, but move the heck on and quit trying to swim to cuba or whatever you’re doing. Where does Diana get her enterouge of 200? Could their energy and resources not be better spent somewhere other than constantly attempting this pointless feat so that this swimmer can splash around in self-aggrandizement?

See? I’m feeling better, I’m off the couch thanks to the blood of others, literally. If you’ve ever given blood you are a lifesaver and I mean that literally too. I am thinking about all blood donors today in addition to Todd Akin and Diana Nyad and the corrupt democratic machine in Providence and the School Deptartment which now has my son’s 6th grade class so over enrolled there are currently 29 kids assigned to each class and will have others obstensibly just wandering the halls with nowhere to go. And I saw a KIA and I’m flummoxed again.

Thank you blood donor, I promise to be less ornery tomorrow.

Monday, August 20, 2012

Another Flunk

I flunked my blood test today, so no surgery, no port removal, but I did sidle up to the bar for two bags of B+. Transfusions are the worst because they take forever. First they have to do the initial blood work to check your levels, then when a transfusion is required they send more blood to be typed and crossmatched which I'm not sure why they have to do every single time {but I agree, better safe than sorry}, then it takes at least an hour to get the blood, so all in all, seven hours tethered to a chair. As I was expecting surgery today, I didn't bring all my stuff, my shameless suite of Apple products, no iPad, the horror, no snacks and no breakfast, again, as I didn't eat past midnight hoping I would make it into surgery.

Transfusions are also the best because they make you feel better. The first 24 hours or so, I feel like my body struggles a little bit to adjust and then, zowie, I can breathe again, I can move, I can literally feel that there is more oxygen traveling from head to toe. Since this, my hopefully last transfusion, #6, wasn't accompanied by chemo, I'm hoping for a vast improvement in how I've been feeling.

I was back on the internet yesterday since I couldn't get up, and now I realize I have to test drive a Honda as well as a Toyota. It's going to be a tough call, the Yota is way more aesthetically appealing from the outside, but I learned that the dashboard lights up in "amber" which I don't agree with at all. I'd much prefer, first, blue and then red, amber doesn't really cut it. Additionally, I like the placement and type of gear shifter in the Honda, but the rest of the attributes are split 50/50 between each and prices are similar. Figure I'll drive both and then see what turns up with the best price. Then there is the dilemma between buying new and stripped down, or used with silly, but very fun amenities. I'd love a built in GPS and I'm completely infatuated with side view mirrors that defrost as well as remote starting capabilities so I could warm up the car and defrost the windows without going outside. So there it is, the answer to the weeks old question of what would I do if I only had a few years to live... I'd defrost my windshield without going outside.

As eager as I am to get the port out, I didn't make an appointment until after labor day, a few weeks from now. The next two weeks hold middle school orientation, first days of school, shopping for school supplies, finishing up summer reading projects and myriad doctor's appointments. Adding a surgery, despite how minor to the mix, just seemed too much.