Friday, December 30, 2011

Pauline Kael

There's been a request for a Tin Tin review, oh boy, a movie review, what fun. In my oh-so-humble opinion, Tin Tin was very well made. I can admit this despite disliking Steven Spielberg and most of the crap he churns out, isn't that big of me? None the less, I was bored. I think I've just lost my capacity for kid's movies. I can't think of any specific fault, as I braved the mall to get to a non-3d version so can't complain about that, and there were some really clever visual moments. But I was still bored. Jonah liked it but didn't love it. He felt they combined too many elements from different books without having good reason to do so. He felt they should have stuck to one book and done it thoroughly.

I don't understand this hyper-real animation thing... why does animation need to look so real? If you want them to look like real people, use real people. If I need to see the veins in Capt. Haddocks arms and each fine hair follicle... just use real people. What's the deal with this excessive motion capture? If they're acting out every scene... just act out every scene and make a real movie with real people. Gollum had his place, you know?

My filmic victory of the day, however, is that after a year of trying, I got Griffin to watch Casablanca with me and he liked it. I knew he liked it when I said "cake break" and he said "wait, I want to see what happens here", but he actually {after teasing me} readily admitted it was a good movie. So I'm hoping Casablanca will be his gateway film... leading to more films, dare I say, harder films, schedule C films, the Maltese Falcon, and Citizen Kane, oh Key Largo has lot's of violence, Rear Window, Notorious, the Third Man, dare I say the 39 Steps? My secret love Dr. Zhivago, and some day, some day, my favorite movie ever, Down By Law.

As for me, my day gave new meaning to the phrase "bad hair day". My short haircut looked cute, I liked the bangs, but the bangs fell out in about 10 minutes and any delusion I had about getting by with short hair for a bit has gone by the wayside. Very little hair left and what I have is dead... you can just tell it's dead. I need to have my head shaved, but don't know when I'll have time, so I've gone the way of the hat. I've given up on the head and I'm redirected my focus on the eyebrows. I like my eyebrows and they're still there, I'm hoping they'll stay, I'm so pale already, I think I really need my eyebrows. And Jonah, in his most wonderful schmaltzy greeting card style said "I still love you with no hair, because it's what's on the inside that counts and you're still the same on the inside." I swear, verbatim, he said this verbatim with a grin and a hug.

Tin Tin

I had two main personal goals for xmas vacation -- have a really festive christmas eve and take jonah to see Tin Tin. Goals are getting small and manageable.

We had a houseful on xmas eve, and everyone pitched in to help. Friends, laughter, conversation, great food and bananagrams. Even Griffin had to admit that “we have the best christmas eve parties.” From a 16-year old this is high praise indeed. Now if we could only have the cleanest bedrooms, or the best put away laundry, I’d be set! So goal one, check.

And today I am taking Jonah to see Tin Tin. This isn’t just any movie to us, J prefers to make movies rather than see them, but Tin Tin is what inspired him to learn to read. He’s read every Tin Tin book countless times with countless giggles and being the googleaholic he is, he knows every Tin Tin factoid and has been tracking the progress of the movie for a couple of years now. So at 1p.m., white blood cells be damned, I’m rounding up our friends J & P and Jonah’s best friend G and we’re off to see Tin Tin. Ironically, what’s left of my hair is sticking straight up today so that’s my homage to Mr. Tin Tin.

I wish Griffin would come, he loved Tin Tin when he was younger, but he's opting out. We had a nice time though, watching movies together the last two nights. Cowboys and Aliens and Rise of the Planet of the Apes {which was a little too heartbreaking for me}.

The second floor of my house, the bedroom floor, is freezing and the fuse box can only support one space heater. So I've been warming up my room and Jonah's been sleeping with me, Little House on the Prairie style. Griffin is impervious to mess and weather, so he's fine in his room. Our new little ritual is to get in bed and J rests his head on my shoulder and we take all my scrabble turns on the iPad. He thinks I'm a really good sport for losing so many games and still plugging away. He likes to watch and make suggestions and I like his sleepy head on my shoulder. Thank you scrabble partners.

Weekend goals: work on Saturday and get to grocery store before school starts up, ship at least one of two wholesale orders before I'm back in the chemo chair on Tuesday and I get to start this happy dance all over again.

Tuesday, December 27, 2011

Two Jars Full

I knew my hair was going to fall out, but I didn't realize it would happen in one day. I didn't lose a strand of hair {on my head} until today and throughout the day, I've lost the better part of it. I have two jars full of hair, much hair in the trash and down the drain, and then I took a walk down my block leaving a ceremonial trail of pink hair. So if you live on Dex and you spot a clump of my hair, I decree that you get to make a wish {and I hope it comes true}.

Now I have a lot of hair, so despite how much came out, I look just fine, but I have a haircut appointment tonight and I'll be getting it cut really short because this is a mess, there is hair everywhere. I'm shedding on my cats instead of them on me, although that seems someone poetic, or divinely retributive. Still, I'm not ready to shave the whole thing because I don't want stubble and because I just don't want to.

I went to the studio today for the first time in ages and just as I got to my door a man looking lost and confused asked me "do you know where I find someone in this building who makes jewelry, named Kim?" Turns out he knows someone who likes my jewelry who needed a gift. Funny timing, and then he told me he liked my hair.

Had blood-work done this afternoon and they immediately called me. My white blood count is crazy low... almost non-existent so I really have to watch out for germs and infection. I hope it goes up soon and after next chemo they can give me extra meds that will help keep them from getting so low.

So here's to white blood cells everywhere, may they go forth and multiply. And may my tumor be in the same shape as my hair follicles.

Monday, December 26, 2011

Lady Parts

In all of my contemplations about the trauma of losing my long hair, it didn't occur to me that the hair on my head wouldn't be the only hair to go, or even the first. In the shower today, I scratched an itch and came up with a handful, and another, and another. So while I got in the shower with my lady parts fully cloaked, I came out with a whole different look.

And it's itchy... just saying. Getting my hair cut short tomorrow, which apparently is not a moment to soon.

Cancer fucking sucks. That is my thought for the day. I want to have a better attitude, I really do, but I just can't think of a way to describe this experience other than that. The fucking suckiness should be mitigated by the unbelievable kindness and generosity I've been fortunate enough to be surrounded by, but it isn't. It's not that those things aren't unquantifiably relevant, that I won't carry them with me in an enhanced and grateful heart forever... it's just that I guess nothing, mitigates the suckitude of this situation and that in itself, fucking sucks!

There was a story in the local paper the other day about a local HS football player {sound familiar?} who was motivated, inspired by the recent death of his 53 year old mom after her "courageous battle with breast cancer". I scan stories like this frantically, looking for clues... why doesn't it say when she was diagnosed? what stage was she? what went wrong? On every level, I hate stories like these and I hate handfuls of hair.

Friday, December 23, 2011

Crazy Glue

I'm 36 hours off my anti-nausea meds, queasy but manageable and my head isn't falling off and rolling away as many times a day. I spent all my energy today baking cookies because it would have made me so sad to not have a holiday spilling over in chocolate chip oatmeal cookies like we always do. Xmas morning is presents and cookies for breakfast here.

But at 7p.m., I've been ready for bed for hours, just plain tired. Feeling disconnected from whatever's going on outside these four walls, that world I used to roam around in. Cabin Fever. Living in my little bubble of sleeping and doctor's appointments at the mercy of friends bringing us food. I've rarely felt this passive and dependent.

I broke another tooth, just a small chip this time, there must be some correlation. Maybe Santa will bring me a do-it-yourself dental kit. I'm ready to just paint my teeth with crazy glue. Poor J has walking pneumonia and is being a good sport despite coughing his head off for days, and very yucky tasting medicine and big, beautiful Griffin just got home from basketball in a very good mood and texting wildly. It's strange when your kids become autonomous and have lives you know little about. Girls seem to share with their moms more than boys do, I wish I knew more about his life, but I know he deserves his privacy and anything that needs to be revealed will be.

Thursday, December 22, 2011

Loyalist Adorabalist

A friend stopped by last evening for a visit and my eyeballs were rolling back in my head from fatigue. Went to bed at 9:30 and slept until 10 today. Hoping that blood tests next week reveal cause of such extensive fatigue.

I've refrained from kid pix on this blog... and bitching about ex and mom and other button issues that get me on crazy rants and have no place here, but I'm breaking my own rule and posting this very brief video because I just can't resist. It's causing me such joy and repeated chuckling to self. It's my young Loyalist making his case at the Old Meeting House in Boston.

Homework is such a misery but when I suggested he review his lines for this {because a parent tipped me off that they had to memorize lines} he said -- oh please, i've known my lines for ages... and sure enough.

I wish the benevolent parent that sent this had gotten the whole clip... him walking up there and all, but I just love this! Why, oh why does he pitch a fit whenever I suggest a theater program? Ever since he was, and I mean really was a grey squirrel in kindergarten, he's excelled in this area -- my little squirrel blew those other woodland creatures off the stage. There's no calculus or AP chem in his future, but he'd be a fine bohemian actor.
video

Wednesday, December 21, 2011

B-I-N-G-O

My dentist is a wizard. Who knew chewing could be so fabulous? I like Dr. Xu, the nice acupuncture lady who gives great advice like, even if you go home and feel great... don't go crazy and clean your house... relax, maybe watch the news or put on some music and dance just a little... little tiny bit. I like when people tell me not to clean my house.

I've signed up for acupuncture every week, I really think it will help. My western medicine needs a little eastern medicine to take the edge off because we in the west have a bit of the barbarian in us.

I'm feeling slightly more human today and am really looking forward to xmas vacation. Jonah wants to build a giant Rube Goldberg device so we're talking about getting the marble run and the wooden train tracks out of storage. My two favorite toys that I'm glad I couldn't part with. Maybe he'll let us resurrect some playmobile too. At present he is in Boston making his case for the tea tax, he was so excited about the trip and I'm liking Griffin's basketball season {even if I never get to a game} because he has to dress up on game days. Trousers and a shirt and dapper tie with his new size 12 wingtips, that boy looks sharp. Is it bad to enjoy your son as eye candy? It's perfectly innocent I swear, It's just so crazy to see my baby all grown up and so darned handsome. I'm working on him to get a little more daring with his tie selections... we'll see, I never got very far with his dad.

I'm aiming to be at the farmer's market tonight and having a houseful of friends over on Xmas eve, so if I forgot to invite you please come. My sister only knows how to cook for 200, so there will be amazing food and after dinner BINGO!

Tuesday, December 20, 2011

Sea Cucumber

Sea Cucumbers breathe through their anus, just so you know. They are also quite disgusting looking, like gooey, hairy, spiky slugs, bigger and far less attractive than your run of the mill garden slug and yes, they are animals and not vegetables. Why some people eat them is well beyond me, no thank you, I'm skipping this butt breathing delicacy.

I learned this last night at the merciful conclusion of jonah’s two hour long plummet down the homework mine shaft of despair. His 5th grade class is studying the American Revolution, culminating tomorrow when they bus it up to Boston to walk the Freedom Trail and debate the Tea Tax at Meeting Hall, where Jonah, quite miscast, will be arguing on the side of the Loyalists.

The assignment was to design a quilt panel centered around a “symbol of independence”. The examples given in class were a peace sign and an eagle, and even I’m not sure how a peace sign is a symbol of independence. Jonah over thinks everything and yes, he gets this from his mother, but I’ve finally learned to let go. It wasn’t until I went back to college at 30 {yes, because I'm a slow learner}, while trying to decipher what exactly, precisely, an essay question was asking me, that I realized it really didn’t matter, it just plain didn't matter. The question was likely written by someone who only may or may not have been smarter than I, and they likely hadn't put nearly the thought into writing the question that I was putting into pondering it, and if I couldn’t understand the contradictory nuances, probably no one else even noticed them... so just let the goal be to stay somewhat on topic, and from there forward I became an A+ student, while exerting a fraction of the effort.

I am entirely inept at getting this across to Jonah who is constantly in a sobbing heap, wailing, I don’t understand, it doesn’t make sense, nothing makes sense. And then he gets really stubborn, just reveling in his misery while every suggestion I make inflames him and we spiral downhill together. It’s awful, it’s heartbreaking, and it’s way too common an occurrence, I am at a loss, truly. Often times, mere mention of the word “homework” sets this flaming ball of doom in motion.

As I left him sobbing in his room last night, I told him that this was a creative assignment, no right or wrong answers, a symbol is anything that we give meaning to, so he could pick anything.

Half an hour later, he bops downstairs, cheery as a mouse, singing a rhyming song he made up and asks “is a sea cucumber a symbol of independence?” Why yes, yes it is! “How?” he asks. So I google sea cucumber and learn that it breathes out of it’s asshole and I say, “well, because they ooze around to the beat of their own drummer... sea cucumbers do things in odd ways because that’s what works for them... they’re very independent. I am tired by now, I don’t know why the hell a Sea Cucumber is a symbol of independence, but then again, I don’t know about the peace sign either, so what do I know?

Sea Cucumber flag in hand, my boy went to bed happy, but by this morning was obsessing about whether he should have colored it in. I reassured him, color or no color it was his worthy interpretation of his quilt square and at least he wasn’t handing in a blank page -- good faith effort... and out the door, "have a good day".

I hope his teacher is having a sense of humor today.

As for me, my white cell count is borderline, so the cancer patrol is letting me get my tooth fixed within the next 24 hours only. I hope my dentist can figure out a clever patch because a root canal is out of the question... too many germs involved and before the dentist I’m going for acupuncture which I’m hoping will help settle things down. There’s a women's holistic health center at Woman & Infants Hospital across town that offers low cost acupuncture and massage which is what I think I could use right about now. I think I’m about to become a regular.

Monday, December 19, 2011

Tooth Fairy Go Away!

Broken molar? give me a fucking break! I was eating bread... nice soft durum round from 7 Stars which I actually went out and got this morning all by myself {what a big girl}. Lasted 30 minutes in the studio because I was too tired and my stomach hurt. So I came home and ate a nice, soft, piece of bread, come on universe, puhleeze.

The oncologist nurse said I can only have the dentist look at it, but I need bloodwork done for him to touch it because my counts might be too low... well what good is looking at it going to do? And so what if my counts are low? I need my tooth fixed, it hurts, it's sharp, come on, how high does the misery index go?

Oy!

Sunday, December 18, 2011

Two Hours

Rock bottom is watching two full hours of the Kardashians, what the hell? I was pretty unfamiliar with this crew until now, and I'm mighty baffled. Kim is the worst of the lot, the most vapid, over-coiffed, monotoned dopette -- this gal is a flickering bulb, oh my goodness. Hubby Kris, what a big ape, pure dolt with flashes of white-fanged anger. Rich and dumb, scary combo. The most likable character, was Kourtney’s douchebag boyfriend, at least he has a personality and moments of spine and sincerity. I don’t get the flashy watch, slicked hair, talk about your dick all day nonsense, but at least he had some verve.

This bunch is the decline of western civilization on a stick, I’m getting the hell out of the house tomorrow. And since I have to stay on theme for continuity’s sake, here it is -- the Kardashians being famous is more disturbing than having cancer right at this moment before I head up to bead. Seriously, no more TV, maybe ever! Good news is I’m down to one anti-nausea med and feeling a slightly firmer grip, Kardasian's aside.

Free Samples

I was thinking, initially, that one of the upsides to my diagnosis would be a field trip to a medical marijuana dispensary. Whether I wanted/needed the dope or not, it seemed like it would be fun, just to see how they work, and I kind of envisioned it like a colorful candy store with free samples.

That seems so preposterous now as the very last thing I could possibly need/want is more drugs in my system. I think a single free sample would, right about now, give me a complete psychotic breakdown. Chemo, really leaves you... what’s the polite way of putting it? Completely fucked in the head. And what was I thinking? I barely drink, I like feeling solidly grounded, that constant quest for escape and detach is so long behind me.

I absolutely can’t stand how weepy the chemo is making me. One could say, I have cause to weep at the moment, but that’s really not it... I’m still feeling absolutely, positively, that this all ends well, the Red Dragon {yes, she's turned into a beautiful Chinese Dragon} is doing her thing, it’s the drugs making me off kilter and weepy and I hate it. I’ve been pondering my radical haircut. My oncologist says I’ll be losing a lot of hair by new year’s at best, so I’m trying to make peace with that. I don’t have the guts to just all out shave it, so I’m going the radical, boy haircut route, and a very kind and gentle salon owner has offered to have me come in after hours, the question is when? This week or next? Bring friends, go alone? Part of me says to get it over with and the other says to wait until my mood stabilizes a bit. I don’t feel like myself with short hair, even shoulder length. It probably looks better, but I just don’t feel like myself and really short hair brings back memories of my mother’s Dorothy Hamill fixation, it wasn’t just the skating lessons inflicted, she dragged me kicking and screaming across a whole parking lot to the salon for Dorothy’s haircut. They say when you have kid’s it makes you understand your own parents better, not me, I never had all that much interest in Dorothy Hamill.

I already don’t recognize how I feel and how I’m thinking, I’m afraid of how disconnected from any sense of norm I’ll be when I don’t recognize myself in the mirror.

Saturday, December 17, 2011

Small Goals

My goal for yesterday was to get out to CVS, just to get some fresh air and stocking stuffers and sugar-free suckers for my dry mouth. I took a shower, a long shower, I wanted to lay down in the shower... that doesn’t usually happen. I got dressed and was pondering the putting on of shoes and my stomach staged an all out, unexpected {well, maybe a little expected, revolt}. Didn’t make it out.

Today I tried again and made it to the studio for 3 whole hours including, admittedly, a bit of horizontal couch time {but at least it was a different couch}. First truly busy day in the shop this season and quite grateful to my studio mate for covering. Was it only a month and a half ago that we all moved in together? Well, I guess you get to know people super fast when one of them gets cancer. I suppose I could call that an upside, but I’ll pass, I’m sure we would have become fast friends regardless, and without the urgency and necessity.

Got home in one piece and passed out on the couch. This fatigue is a crazy thing and I even skipped my secondary nausea meds today, the ones that tell me not to drive or operate heavy machinery. The boys just went to their father’s for the night, so I’ll get lots of sleep {poor Jonah, up coughing all night and then saying "thanks for taking care of me mom"} and hopefully, some presents wrapped. I’ve been trying to wrap all week and haven’t touched a thing but have managed to get everything in one place, so tomorrow is solely dedicated to that. Small goals.

I just finished the week’s worth of delicious and healthy lentil soup VL made for me and after a week of commenting on how good it smelled, Jonah finally tried some, and then some more and then some more, so there is a small victory, that I'll take. He was also quite enchanted, as well, that our friend RC sent us a Fellini’s pizza the other night all the way from D.C., that struck him as very cool. I agree, that is very cool.

Griffin had a rough week with school followed by 3 hours of driver’s ed {!}, and then basketball practice every day. My guys are ready for a break, but have school throughout the week. Today he complied without grumble, when I asked him to bring me my blanket from upstairs, but just kind of flung it in a big heap on the floor next to me... got some work to do with that one.

And for the record, I remain madly in love with my iPad. I got all my calendar stuff in there. I'm losing many games of Scrabble {Words with Friends to be technical} all at once, and I take it to bed with me and listen to This American Life episodes. Ira is my sleep buddy... so relaxing, so familiar.

Friday, December 16, 2011

Verge

I think maybe sleep is begetting sleep at this point and maybe I need to get up. I’m feeling demoralized for the first time. Not big picture wise... I’m going to get through this, I’m going to get better, but demoralized about what that entails.

I feel so genuinly lousy and not like myself and it’s because of chemo... because I have cancer... too surreal. I’m a dental hygiene freak, decades long daily flosser and now suddenly I have puffy, bleeding gums... who’s mouth is this? I have a foreign object lodged in my chest so I can’t sleep on my left side like I prefer. And we’ve already acknowledged brain death.

I think part of the reason I told everyone {within hearing distance} about my diagnosis was to make it real, so that I could handle it... come to terms with it, before treatment, so I’d be ready... and they’d be ready, but that maybe, hasn’t worked. Everything seems scary unreal and when I think I have to keep doing this every 3 weeks for six months, that seems like an unfathomably long time. And while it’s bleeding gums today, what will be tomorrow?

I think I also told everyone because I was afraid of having to tell them when I feel like this, because right now, I can’t say anything without bursting into tears... I think it’s all the drugs, I’m not usually on the verge of tears all day. I’m also afraid of people’s horrified response... so I told people I had cancer, before I looked like I had cancer, so as to make it easier, for everyone, myself included.

But now I’m afraid of how scary and horrifying this will be for people who care about me and strangers, anyone. Let alone looking in the mirror myself, or my babies seeing me like this.

I was thinking the other night that while there can be an unequitable distribution of unfortunate events that land on some {me}, there's a flip side of that. Some people don’t know anyone with cancer or to whom something dreadful has happened, but some people know too many. I’m thinking of friends T&D, one of whom is my official litter box marshall for the duration of this charming escapade. T&D who have lost so many friends and family to cancer over the last absurdly short amount of time. How cosmically unfair to them to have yet another friend going through this. And what strength for them to show up and be present. Just saying. It would be nice to see a tad more karmic equity out there on both ends.

And you know... this is poorly written... I've lost my flow... brain impotence... where's the meds for that?

Thursday, December 15, 2011

Denial

I think I was overly optimistic about this week, how it would go. That because I’m not violently ill i could ignore the host of symptoms that together are doing me in. I’m queasy and woozy, dizzy, befuddled, confused. My vision is blurry, the lights too bright, i’m tired and teary and just want to sleep.

I went into work last night but felt awful, I thought if i took the day slow, I could do it. I’d heard about chemo-brain, but didn’t take it seriously. I tried to tally up last weeks sales, transfer the data from the notebook onto my artist tally sheets. This is an easy, peaceful exercise for me and the numbers in the book usually match the tally’s, albeit, sometimes a few dollars off, but I can find the error quickly. I just couldn’t do it last night, my normally orderly rows were jumbled and crooked and nothing, i mean nothing added up. It was unsettling. I’ll have to try again in a few days. It’s scary and disconcerting when your brain doesn’t work... when your whole body is suddenly different, feeling, acting, differently in every way.

I tried to play some scabble turns with the people i’ve been pestering to play with me, but the letters didn’t compute, i couldn’t do it, just looked at them confused and not understanding.

So i’m throwing in the towel for this week. I give up, i’m going to sleep and what will be will be. I have to learn to let myself off the hook.

I’m imagining the Red Devil as my Scarlet Angel. She’s swirling around inside me throwing her deadly, acid jello bombs at my cancer cells and she is good, she’s splattering them left and right, she will ultimately prevail, but some shots go awry with my healthy cells collateral damage. But she is my own personal warrior and I just have to sleep off the side effects while she does her job. I have to make myself understand that i have to let go and just do this, focus on this and let the rest fall away when it needs to. I'm not good at that. I think about all the things I need to do, that I want to do, all the time, spinning, spinning around my head. I have to learn to stop, press pause.

At least until the school bus comes at 2:45 {and maybe even then} and may the powers that be, spare me homework drama.

Wednesday, December 14, 2011

Crashed

Tired, queasy, brain-dead.

Chemo Day One

Phew. Well, the actual receiving-the-chemo part is a breeze. Comfortable chair, kind, caring, sassy, smart nurses and my companion for the day, JR who is one of the loveliest {and I’d be remiss not adding, most talented}, good-hearted and clear-on-the concept women on my block which teems with wonderful women. JR went through this same cancer 18 months back {and is doing swimmingly}, luckily her’s was caught a tad earlier which really is irrelevant, she is the perfect Fairly Cancer God-Mother for me. JR has two swell kids in college and right now, with my HS sophomore and all that looming, anyone who has successfully navigated the get-your-kid into college thing is a rockstar in my book.

I remember when Griffin was a toddler and I met people with big kids, you know, in kindergarten or first grade, I was in awe... wow, you figured out how to get your kid to kindergarten... what a feat, my kids are fearful and clingy when they’re very young, but no one and I mean no one would believe that about Griffin now and that little J-boy is holding his own. I’m happy to report, both boys are successful kindergarten graduates.

Chemo took about 5 hours, longer than I expected. They access the port and bag after bag of mystery fluid drips innocuously into your veins. The Chemo drugs I’m taking are Cytoxan and Adriamycin which google has informed me is made from soil fungus. How do people figure these things out? Cancer? Well, let’s try us some soil fungus.

TF who recently finished off her adventure with this potent cocktail calls Adriamycin the Red Devil. Yep, it’s bright red and what looks like two giant syringes {don’t worry, they poke into the tube, not the flesh} look like they’re filled with bright red jello. The nurse puts on her hazmat gear and pushes it in slowly because it’s like acid if you get it on your skin... hence the port, I’ve learned. Mmmm, tasty acid jello. It makes you pee bright red the next day too, it’s a good thing they warn you about that.

They also drip in massive amounts of nausea meds {a very good thing} and steroids which are also good for nausea and energy {fleeting as I learned too quickly}, and lots of fluids -- dehydration is bad, so it’s kind of a good thing that something is giving me dry mouth... i want nothing more than to drink water all day.

So I felt pretty good afterwards and took Jonah to piano at 4. His class is in my studio building, so I zipped over to couch it for 30 minutes {no delusion of getting any work done} and almost immediately crashed. It was all I could do to drag us home, get him some dinner and collapse on the couch.

Nauseous already, and with a growing headache I hit the supplemental meds early and right now I’m counting down until at least 9 a.m. to take another.

I don’t feel great, but I know I could feel a lot worse. Hoping not to, well see.

Tuesday, December 13, 2011

Dignity, Thoughtful Evolution

I finally got around to reading the pamphlet that was given to me the day of my port installation... the big plastic thing sewn under my skin attached to a tube that weaves over my collar bone and then down again into an artery, it’s called a Dignity Port and has the tag-line “thoughtful evolution”. According to them, it’s the latest in port technology. There’s a picture of an attractive, in love, middle aged couple who along with the brand name seem to be indicating erectile dysfunction meds or adult diapers. Dignity? I fail to see the dignity in this device or procedure. I think they should be honest and name it the Vlad or Dracula’s keyhole. The kid’s version could have Twilight references. Dignity, who are they kidding? I don’t want to be a bad sport, I know it will come in handy, but I just can’t work up the excitement they’re aiming for in the 12-page booklet.

And what is the Thoughtful Evolution reference all about? Are they implying that if humans were to evolve thoughtfully, we’d grow plastic “power Injection” ports instead of wings? We’d choose this over learning to use a bigger portion of our brain, or have larger lungs so we could swim under water longer? Given the choice, this is not the way I would Thoughfully Evolve.

Waiting for my Fairy Cancer God Mother to walk up the street and get me. Can’t choke down breakfast, so writing instead. I love you laptop. More on my FCGM later. I usually don’t go anywhere without showering, but I’d rather go over there skanky and wash off all the hospital germs when I get home. I was about to say, I hate hospitals, but that’s kind of a no-brainer, aside from staff, who doesn’t hate hospitals?

Monday, December 12, 2011

'Twas the night before...

So what do you do the day before you start chemo? Clean up the studio {kind of}, fill anti-nausea prescriptions, buy things you don’t normally buy, but that folks in the know have told you, you really must have... hand sanitizer, laxatives and alcohol free mouthwash for starters. Go to the grocery store and stock up on non-perishable food items your kids will eat, lots of pancake mix, mac and cheese and potato chips... Make appt. for radical haircut because you’re not ready to just shave it off like a very brave woman you know {and it’s winter god damn it, it's cold!}

The tree is decorated, a few gifts are stashed away haphazardly... my 16-year old actually paid me a compliment, “nice job mom, it’s so cozy in here, it seems so festive and holidayish, I like it.” This is worth a million bucks.

You treat the kids to breakfast-for-dinner, pancakes and bacon, Brinner {a term we confess to lifting from friends}, and keep breathing... I guess that’s what you do.

Snakes

I've been dreaming about snakes. Large, neon-hued, bulging bellied, quick as dart snakes, popping up all over my house. They spring up vertically from the floorboards, they're there and then they're gone as I frantically try to grab them to squeeze by the throats until they go limp. There's no return to the wild scenario here, I want those snakes dead, I'm furious at them disturbing the peace and having the run of my house. I am frantic, angry and hell-bent in my dreams, I don't flee the scene, I want those motherfuckers.

It doesn't take a genius to analyze these dreams. I'm a little disappointed in my subconscious, that It couldn't conjure a more creative metaphor for cancer cells. None the less, I'm starting chemo tomorrow... it's time to grab those fat boys by the throat, they've trespassed long enough. Time to get down to business, snakes beware!

Friday, December 9, 2011

Fail or as Jonah would say, Epic Fail

Sorry to report that the press and cling saran wrap experiment was a bust, it did the exact opposite of what I’d planned. It allowed little drops of water to seep in, and then pool over the bandages that were meant to stay dry. oh well, I tried, it was a good faith effort. I took everything off, let the mess air dry and put on the new bandages the purple nurse slipped to me under the table because I’m not supposed to change the bandages myself, I’m supposed to not shower and leave them be for a week, or until I go in for chemo on Tuesday when the professionals can remove them. Too bad, I’m a band-aid renegade. As for the press and cling saran wrap, I’m not sure what the point of it is at all, another ill-conceived consumer product to make the market shelves more confusing. There’s a picture on the box of some elaborately wrapped hamburgers, but I’m not sure why anyone would go through so much trouble to wrap their burgers... why they would “press and cling” instead of just wrapping. But my favorite products are routinely discontinued to make room for nonsense like this, so I’m not the most qualified market research commentator.

Perfect moment of the week {brought to me by the kindest, sneakiest folks ever} was Wednesday evening, in the studio, playing 2-person Fruit Ninja with Jonah on the iPad. Oh giver’s of iPad, there is a special place in our hearts for you for ever and ever! It really is true, everyone should get a goody bag with an iPad with their cancer diagnosis, I'm even more convinced of this now. I couldn’t figure out how to turn the volume down and the techie little 10-year old says “I think there’s a little switch on the side.” How does he know that? He hadn’t even used it yet.

Three days until chemo. Three days until I start zapping those errant little motherfuckers. Game on cancer cells, you’ve got to go, I don't like this waiting game... I have much, much more fruit ninja to play. Seriously, I can’t wait to start chemo. No fear, ready to kick cancer’s ass, I’m pissed, I’m disrupted, I’m annoyed and I’m stubborn, I will not accept anything less than total permanent eradication of the univited visitor.

Thursday, December 8, 2011

Portification

Well, I’m portified. The procedure went smoothly, but I’m more sore than I expected and I feel like frankenstein with a slit stitched up at the base of my neck. They told me not to shower for a week, LOL -- not shower for a week, that’s funny, this girl doesn’t go a day without a shower and certainly not since they got blood in my hair... glad I was dozing off during that part... actually no one was quite sure why I was laying in a pillow soaked with blood. The doctor whispered to me, that he’s the same way and would also be sneaky and take a shower and to just cover the bandages with press and seal saran wrap and then change them. Should be a fun-filled shower in the morning.

Yesterday, before his complete I-can't-do-my-homework-it's-too-hard-and-everything-is-horrible meltdown. Jonah told me that even though I'll be sick, it's really an adventure like any other, because we'll meet new people and do different thing. I could hug this boy to death. He also recently saw a billboard that said "after cancer, every day is a great day", and he was so excited for me, that every day of my life is going to be great, no bad days ever. "Isn't that great mom?" Which is swell, and his smile was so sweet and genuine, but that's a lot to live up to.

My primary nurse was dressed all in purple and lavender, so we looked very nice together. Her name was Lorena, another sexy movie star name and sweet Lorena is collecting toys for the kids at Chad Brown {our local low-income projects} for the holidays which is perfect, because I have a bunch of mint-in-the-box toys in the basement, never missed by the boys after the yearly Christmas deluge at shopaholic-nana’s. I’ve been meaning to donate them somewhere and now they can head over to Chad Brown in the capable hands of Nurse Lorena, and since I’m so close to the hospital she can pick them up, or maybe I’ll just walk up there with them tomorrow if it’s nice out, after I do some treasure hunting in the basement.

At every visit to the hospital, they are fastidious about you being who you’re supposed to be. Everyone, and I mean everyone looks at your bracelet and requests you state your name and birthday. Which, ultimately, is a good thing, no skewering the wrong person, we get to leave with all of our limbs, but this attention to detail was disturbingly lacking in my chart which indicated cancer on the left side which is wrong... it’s on the right, and therefore, port goes on the left.  They also had me scheduled to be moved to another building afterwards for a mystery treatment which I kept insisting must be a mistake because no one had told me anything about that, and it was a mistake, but had I not protested, I might have gone through being transported to who knows where for who knows what, and I'm pretty sure that would have made me very unhappy.

So now I know to be vigilantly informed about what each appointment is for, so mistakes don’t occur. And I’m glad I didn’t try to walk home, I was comletely weak-kneed and confused afterwards, so many thanks to VL for her swift curbside pickup and home delivery. I fell right into bed, slept for 3 hours, woke up, threw up and went back to bed for another 3 hours and now I feel fine. Just a little woozy and sore. Looking forward to a good night's sleep and easing into the day slowly tomorrow, a mini-vacation.

Wednesday, December 7, 2011

My face o.k.

My deepest, darkest secret... contrary to my proletariat views and do-it-yourself attitude... is that I have a cleaning lady who comes for a few hours twice a month. I hang my head in bourgeoisie shame as I confess that, but she is the life luxury I can’t live without. I will forgo any personal necessity... haircut, eating out, clothing {obviously, if you’ve seen me lately}, anything to have my house “cleaned” twice a month. The first $140 I make every month makes me think, “I can pay Young this month, yay.”

Why the quotes? well, because Young doesn’t clean so much as make things look clean and she’s adept at moving things around so they appear tidier than they really are. Seriously, she cleans the bathroom floor with a paper towel. But knowing that she’s coming makes me deal preemptively with the accumulated flotsam and jetsam that continuously gathers.

Young, who’s real name is, I believe, Chung, is Korean and despite living in Cranston for 20 years speaks broken-at-best english. I have no doubt that if I had been living in Korea for the past 20 years my Korean would be worse than her English, so no judging here. Not everyone has a flair for foreign languages. I fired Young once, but my heart broke every time I saw her car parked across the street while she cleaned my neighbors house, and I was wracked with guilt because she looked so hurt and bewildered after I finally gathered the courage to let her go, so back she came.

Young is constantly taking English classes and listening to English tapes, as well as tapes that help her study for the Citizenship exam “every state has two Senators...” They don’t help, but I admire her tenacity.

Young cracks me up. I’m not sure if it’s the language barrier or if she really is a total kook, I don’t really care, she kills me and I’m very attached to her in a very odd, uncomfortable way. We have the most insane, dysfunctional conversations that can make me chuckle to myself for days.

When I told her I was getting divorced she immediately said “you have boyfriend?” “No”. “He have girlfriend?” “No”. “Then why you get divorce? you want boyfriend?” “Well, yes, someday that would be nice.” “Can you tell him move back in? then you get boyfriend and then you tell him move out? you wait until you have boyfriend.” “I don’t think that would be very nice, I’ll get divorced first, I think it’s the best plan.” “Oh, I don’t know...” she would say, very sceptically, and I know, with my best interest at heart.

For the next few months she would greet me with “you have boyfriend yet?” “Why not? why not? why not? you not too old and you’re face... it o.k., your face not bad, you can maybe have boyfriend” “I don’t know, I’m busy, where am I going to find a boyfriend?” “Oh, you use internet, everybody use internet, it best way.” Young has been divorced for years and is probably around my age “he crazy man, crazy, crazy, bad man, no good, no good, I don’t need that.” So I said “how about you? you use the internet to find a boyfriend?” “Oh nooooooo, it too dangerous!” “Oh, so it’s too dangerous for you, but I should do it?” “Well, maybe not, but maybe you try, you try internet.” My face o.k., not too bad, come on, have you ever had a compliment like that?

So now with the cancer, “you eat pork? you no eat pork! after surgery you eat pork, not now and after surgery ginseng, it make you hot, that good, but not hot now, now is bad, very bad.” And today... today, Young was the first one that wanted to feel the tumor. That’s right, my cleaning lady felt me up and said “oh my god, how doctor not find that? you sue her, you going to sue her?”

So ladies, if anyone needs a low cost breast exam, I can hook you up! And don’t eat pork.

Tuesday, December 6, 2011

Typing Pool

A short post tonight, because I'm eyeball deep in typing up the epic story Jonah's been writing in his "writer's journal" for school. It was supposed to be manageable -- pick one story from your journal to develop, but J's whole journal is one epic story, so he found himself in a bit of a bind. His sweet teacher and I are taking pity on a boy who got carried away with his adventure of Frank Furter {no, not Frank N. Furter of Rocky Horror fame -- no fishnets in this story}, the hotdog that falls through a sewer grate into a puddle of toxic sludge and comes alive. I'm on Chapter 5 and thus far Frank, who has a penchant for chocolate, has befriended a sewer gator with a devious ulterior motive and it looks like Frank is about to become breakfast. But maybe not, as there are about 43 more chapters I have to type so J doesn't drown in panic and overwhelm.

As for me, the lights are on the tree and the ornaments are up from the basement. Wholesale orders have been shipped and now I'm working to stock up a couple of galleries {you first MG, don't worry!}. I have some gifts to wrap, trying to get an early start, wrapping up gifts and loose ends before the shit hits the fan.

Thursday is my port insertion procedure, I'm just plain not looking forward to that. Hope I can be out and about on Friday as there's much Craftopia prep to do and that is something I am looking forward to, despite how much work and chaos it is. Looking forward to a happy day of art, craft, friends, and celebration. No cancer talk allowed and only gentle hugs because while I know it's perfectly safe, that port-thing freaks me out, like it's going to slip around and stab me in the heart. Eyeballs, veins and earthworms... these are my heebie jeebie inducers, the things that irrationally skeeve me. I don't like to look at them, or think about them... no digging without gloves or wearing contact lenses, I could really do with out a permanent tube inserted into a vein in my chest, blech, no likey.

addendum: oh my god, i've just flipped ahead... this story will take me a week to type... there are land squid, a mini-moose named bob, a walrus, yikes... I hope I don't fall down the sewer any time soon.

Monday, December 5, 2011

Homophobes and T-shirts

Days later and I’m still on the childhood crush thing. I think it’s my brains coping mechanism, keeping it from going scary places it’s best to avoid. Jonah, my 10-year-old, and the kindest, sweetest, biggest-hearted human being I’ve ever had the pleasure of knowing, asked me today if I’d be better by Christmas and it made my stomach hurt. He was so sad when I told him that by Christmas, I’d probably be pretty sick and tried to explain the longevity of what will be happening, but kids have no sense of time, who knows if any of us do. But then his brain wheels successfully spun and he got happy and chirped “but then you’ll be all better and we’ll be so happy!” And my brain just can’t go to the place where the alternative of that lurks, and really, as optimistic and stubborn as I feel, I don’t know where I’ll be in a year, if we’ll be celebrating or not. So for this week, I ponder the past.

I hate homophobes, and I’m always confounded when they dispute that many {most} people know they’re gay from very early on. Anyone who’s ever had a childhood crush knows that it’s either on a girl or a boy and only rarely both, and either way we remember it always. So maybe homophobes were dull, lifeless little boys and girls who didn’t have childhood crushes, maybe there’s something wrong with them.

My other HS crush was more of the lifelong, beginning in early childhood variety. I’ve known DT my whole life. Our families were friends and then they weren’t and then they were and then they definitely weren’t. One day in third grade, I must have been only 7 or 8, I looked at DT and cupid's pesky little arrow struck...yep, I liked boys. We don’t label it as kids, we only label it when we’re forced to, when we grow up and start labeling all sorts of things that would be better just left alone. I never had to declare my heterosexuality a luxury not everyone gets. When you’re a kid, you just know what you feel and what could be more innocent, sweet and natural. I swooned over DT without him ever having a clue until HS when we briefly dated, but mostly became friends. I do, however, remember our first kiss on a random St. Patrick’s day, like it was yesterday and it was thrilling. Yep, I’ve liked boys ever since, in my more experimental phases I really wanted to try being with a woman, but I just can’t, I really can’t, I’m stinkin’ 100% boring old hetero which is kind of a shame because women are lovely and it would surely expand the playing field. I hadn’t seen DT in 30 years until last month right before the cancer tornado hit land and I swear, having a crush on him is hard-wired into my DNA. I realize I’ve had a lifelong crush on DT... it’s not real, it’s not based on reality, who knows who someone is after 30 years and I suspect DT and I while having some things in common are quite different and have chosen different paths. But it’s just like the friends you have when you’re really young... they get hard-wired into you even after you’ve long since gone your separate ways and maybe that’s why people migrate to strange surreal events like reunions.

My very first girlfriend was CK and we met on the playground in nursery school. I remember going to her house, my first “play-date”, {although, we didn’t call them that back then} and she told me her favorite color was light blue. And being the life-long idiot that I am I thought “wow, that’s so cool, I wish my favorite color was light blue.” What the fuck is that all about? Why did I think liking green was inferior to light blue? Because we met so young, it doesn't how long I go without seeing CK, I'll always be comfortable around her... it's hard-wired and you too, NMP.

I love that Jonah’s lifelong theme color is orange because everyone should have a theme color. Every year on school picture day, He picks out his current favorite orange shirt and we’re amassing an impressive collection. I’ve been known to have shirts especially screen printed on orange for him. So if laughing and being happy helps you heal, I’ll need lots of my orange-shirted love bug, but I’m just so damned worried about what this is and will do to him. He’s in 5th grade, getting ready for middle school and that’s stressful enough, this seems so unfair to him. I guess that’s a mom-thing, it never once occurred to me that this wasn’t fair to me, but it kills me, how unfair it is to him.

Sunday, December 4, 2011

Mix Tape

JH was one of my two great High School crushes {yep, we all had them, the kind you never forget, and yeah, the other one knows who he is too, especially since they were best friends} and it was long enough ago, that I can admit that easily and earnestly with an easy heart, and most certainly no ulterior motive. I’ve been pondering if I’m just getting way to personal on this blog, but I figure why not? People are interpersonal, that’s what makes us special and no one has to read if they don't want to or if I make them uncomfortable, and what could be nicer than reading that you were someone's HS crush and they’ve remembered you fondly for so many years, why not give someone that, as so many have and are giving so much to me?

Thanks to Facebook and the aforementioned 30th reunion it was lovely to see that JH is settled into a happy life, happy marriage and has followed his bliss into a career in the music industry. He and I, neither musicians, loved the same kind of music and he has remained obsessed. Looking back, I suppose we were suburban outsiders, in cahoots with a small eclectic group in our constant quest, need, for road trips into Manhatten {from our suburban hell} to soak up all the punk rock and emerging bands wherever/whenever we could find them. In those days, the drinking age was 18 and NY had paper licenses, sans picture, the numbers easily scratched off and modifed with pencil and a steady hand, and in the city, they never carded anyway. So we’d ditch the keg parties midway to get over the bridge in time for the Ramones, Dead Kennedy’s, the Clash, the Damned, Plasmatics, English Beat, the Specials, Madness, the Psychedelic Furs, Go-Gos, B52s, Television, the list is long.

I had a magenta streak in my dark hair, things change, they stay the same, if we’re lucky we find ways to merge our then-selves and our now-selves staying true to whatever makes us who we really are -- symbiosis. It’s been a long trip for me, but I feel more comfortable in my own skin that I maybe ever have which is why getting cancer now, is a little silly. And by the way, I’ve dyed my whole head purple to enjoy my last few weeks of hairfullness and it’s making me very happy. Sadly, I’ve had to ditch the pink {and I mean very, very sadly} because everyone at the clinics thinks I’m making a breast cancer point. I was speechless on one of my early visits when a group of staff said “oh we love your hair, it’s so great you did that to raise awareness.” I’m thinking... are you insane? I found out I had cancer 48 hours ago and you think the first thing I did was run out and buy hair color? No, I will not become a cancer zealot, sorry breast cancer industrial machine, you will not become my identity.

In 1980 I had a beat up 1967 Mustang that got us where we wanted to go, when I wasn’t broken down on the sides of random roads, because that car was a wreck, but it was a beautiful wreck. I was fearless at 17 but somehow lived to tell the tale which is, actually a tad suprising, I was probably more wreckless than fearless, I was an angsty-girl. When JH and I reconnected on FB we exchanged lists of our favorite movies, books and music from the last few decades and while I'm rarely a prankster I couldn’t resist populating my list with Mariah Carey, Whitney Houston and the like, Titanic as my favorite flick, all the elements of pop culture that just baffle me and turn my stomach. He was a true gentleman and tried to hide his dismay and just said “wow, you’ve changed a lot, but that's cool”. And I have, but no one changes that much and if they have, they are or were, just pretending. Interestingly, our current lists had many crossovers, but mine was probably a bit mellower, more Cowboy Junkies, Lucinda Williams, far less head bashing than in the past.

So in reading the blog, which I’d not expected him to read, JH said he’d love to share some music with me and I was expecting a padded envelope with a CD or 2 but yesterday, I got a package I could barely lift {ok, exaggerating a little, I’m not that pathetic, I practically haul crap around for a living}. But what fun! A gorgeous cardboard box jammed full of new music to discover and old music to relive, a box of proverbial mix tapes and when was the last time I got a mix tape? I haven’t opened it yet, I’m waiting for the right moment. I don’t want to rush, I want to enjoy the experience.

Saturday, December 3, 2011

Utilitarian Post

I continue to be moved to tears and just blown away by many wonderful people who have offered to help during this cancer tornado. As much as I'm more of a helper than a helpee and asking for help sucks, I realize that my family and I really will need some help over the months ahead.

That being the case, some swell friends have set up a website for me using the service "Lots of Helping Hands" which is used to coordinate help so I don't have 106 gallons of soup at one time. {we haven't loaded it up with info yet, but we will}. I'm wondering if it lets you tell people when you want a game night with friends...

I'm going to start off asking for help feeding everyone because already, I've been having a tough time doing that because cancer is apparently very time consuming. This site will be crazy specific and list what we like to eat and when we need it, it will tell you where we like pizza delivered from and that we all hate walnuts and are firm believers in nut-free brownies and cookies. They'll be a calendar, and if anyone wants to fill a need they sign up and then that "need" is listed as "met", so we get one pizza and not 10 pizzas. As for groceries, it occurred to me yesterday in the shower {where all great ideas come from} that I can start using Peapod, because with limited time and impending limited energy, i need to devote as much as I can to keeping my business afloat because self-employment and cancer are not the best mix. I'm pretty set with transportation with the luxury of a hospital walking distance away.

I'm starting 3-6 months of chemo on 12/13 and really don't know what to expect, so as i get further into it and I'm told, will be further tired, I might need things like someone coming over for an hour to help Jonah with homework. I'm trying to involve the kids in this, as I've been advised by the cancer-specialists to do, so when they're having a rough time, they might ask me to put chocolate cake on the list. I'm hoping this experience will help them be, when they grow up the kind of people that step up to help others {I hope I've been that type of person}, of course that's always been my goal, but this will make them truly realize the importance and sacredness of community and so from bad things, hopefully, will come good things. The church of community.

If you're interested in being a part of this and I certainly understand how busy everyone's lives are, you can go to:


these directions come from the site:

Instruct the people you've invited to fill out the right-hand side of the form which is a Request to Join the Community. Once they've done this, you will begin to receive emails back stating that there are "pending members". Coordinators can "approve" the pending members from the pending members page on theirAdministration tab. Once you have approved them, members will be automatically added to the community and sent instructions for setting a password and signing-in.

After Chemo is surgery and then 6 weeks of radiation, so I'm looking at a long period of treatment. 

Thanks so much for considering signing up!

Much love, k t c

Friday, December 2, 2011

School

I am now a proud graduate of chemo class and I have the 2" thick, 12 lb. binder to prove it. No diploma however, or laminated ID card like I got at Crowd Manager Class last year. Yes, it's true, I am a Rhode Island Fire Department certified Crowd Manager and I have an adorable ID card with a gold embossed fire dept. insignia in my wallet to prove that.

Being a certified crowd manager allows me to put on events like CRAFTOPIA without having to pay a fire detail to be there, which is a big deal because if I had to do that, the table fee for artists would probably have to be about $700 and it would be a sad and lonely event. Crowd Manager class is even longer than chemo class, clocking in at 3 hours and when the fire dept. says 3 hours, they fucking mean it -- 3 hours in Buttfuck, I mean Burreville, RI no less. Three hours of them telling a catatonic auditorium full of wanna be Crowd Managers how lucky we are to be in Rhode Island which is the only state to offer us this life saving, comprehensive, 3 hour escapade. Why, just across the border in MA, they have a paltry 30 minute certification, so how lucky are we?

The astonishing thing about this class is that all you get is the fancy ID card... in three hours they do not impart a single bit of useful information. I learned that in case of an emergency, I need to have a plan and then I should implement the plan... but they don't have any suggestions regarding what this plan should be, well, I suppose I'm glad they're leaving room for creativity. For three hours they talk about what a great job the Fire Dept. is doing for us, with this class and all the other wonderful things they do... yes, our fire dept. has it going on. The bad news is, the card is only good for two years and then I'm supposed to take the same class again, this is a fact I will feign ignorance of should anyone deem it necessary to check my card, thus far, no one's been interested in checking my credentials.

As for Chemo Class, I learned that side effects from chemo are extremely rare, I shouldn't expect nausea or vomiting, those are a thing of the past. Sure, I believe you completely, and here is a check for that bridge you've got for sale. I figured at least there must be some fab new chemo drugs these days, making chemo so effortless. Oh no, they said, these are the "gold standard" of chemo drugs, they've been around since the 70's. What the fuck? In all these years of research and progress you're giving me the same toxic cocktail that's been around for 40 years? Where is the biomedical advancement here? And fess up people, that shit makes you puke and feel like crap, and that's why you're giving me a page of emergency phone numbers to call.

The good news is that I can go to a free beauty class where a professional cosmetologist can teach me how to draw my eyebrows back on. They were really enthusiastic about this class, but somehow, I don't think that's for me, they didn't believe me, but I'm pretty darned sure I'll skip that adventure. If I really miss my eyebrows I'll give Jonah a sharpie and let him go to town, he has a lot of experience from drawing on his own face.

Thursday, December 1, 2011

Double Yahtzee

My son Griffin is a bad sport, it's his Achilles Heel, we all have them. He's very competitive, does not like to lose and when he does, it's wholly without grace. When he starts losing, things go down hill fast and he'd rather quit than finish. Ironically, he's good at everything and crazy lucky. One time at a school raffle, one of the baskets had 4 Celtics tickets and he wanted them badly. When that basket came up it had the most tickets aimed towards it and I turned to his father and said, "pay attention, they're about to call Griffin's name", "what are you talking about?", "seriously, he wants those tickets and he's the luckiest person I've ever met, it's in the bag." And the winner of the sports basket, is Griffin Clark. The woman behind me had over heard and said "wow, I thought you were nuts, that was amazing." And I said "I know my son."

Clearly the good luck skips a generation, but that's a whole other story, Griffin has great luck, and it's a beautiful thing to see your kid be charmed... at least in certain respects... his mom got cancer, so that kinda sucks. But the bad sportsmanship drives me crazy and I don't tolerate it, never have, never will, he might never get over it and he'll pay the price someday and it's gonna be ugly, but while he's in my charge, I don't accept it. It's one of the few areas where I'm not a push over.

A few years ago we were playing Yahtzee {I love Yahtzee} and I was winning, an unusual event. Griffin was getting more and more surly and demoralized and wanted to quit but I wouldn't let him. I told him I let him enjoy his victories and he owed me the same privilege {especially when it happens so rarely} and besides, the game was barely begun, but to him it was a hopeless misery. He begrudgingly picks up the dice and rolls... instant Yatzee, five of a kind in one roll. But that wasn't enough to completely turn the tide because I had been way ahead. Next turn, he rolls another Yahtzee, side-by-side double yahtzee, Unheard of, but that kid is lucky!

Obviously, his mood changed quickly after that feat, and I tried to make "double yahtzee" a metaphor for sticking with it, having faith, and not quitting regardless. That little plan didn't work, the mere mention of double yahtzee pisses him off because he doesn't plan on learning anything from me... or admitting it anyway.

The day after Thanksgiving last week, I had friends over for leftovers and we were playing games, it was really fun, I love games yet rarely have the chance to play and it was a festive, gathering. I coerced Griffin into a game of Yahtzee and he was winning as usual but I had 4 ones laying down and one more roll to go and I trash talked, I said "pay attention kid, mama's rolling snake eyes", "yeah right, you wish," and ZAM, there it was, a Yahtzee... I've had maybe one in my whole life, I'm not lucky, I don't roll Yahtzee's. and then a few turns later Zammo, I rolled another, and instead of getting angry, my son laughed and said "I did not expect that." And after that he was even willing to play Bananagrams and laughed while he lost.

I'm taking that as a sign that my luck is changing. Double Yahtzee!

Wednesday, November 30, 2011

Chemo Class

I'd recap the day, but have a hard time believing it's been just a day. Or that the last month has been just a month, I feel disoriented, like I went for a short drive and in 10 minutes wound up 1,000 miles from home. I'm not sure sure how I got here, and barely recall where I came from -- normalcy, I came from normalcy or my chaotic version of it. But now I'm plunked smack dab in a foreign land where nothing adds up {even with a calculator}. The new norm is no norm.

I started the day with grumpy boys and no milk in the fridge and a 7:40 a.m. meeting with the Oncologist to discuss "the plan" with my trusty note-taker who's missing work for this {thank you CA}, next thing I know I'm meeting with a social worker discussing my kids and why I haven't seen my father in 10 years {she approves, I'll skip the adjective} and then I'm touring a chemo facility and scheduling appointments for a two hour Chemo Class on Friday where I get handouts of all the impending conditions that should spur me to the emergency room. Then I'm making an appointment for next week to have a port surgically placed under my skin wedged into a vein.

I finally get home, shower and meet a friend who also needs her driver's license renewed so we do that {thanks DH} and while there, Griffin texts, he wants me to pick him up at school, he's not sick, he just needs to be at home. but I can't pick him up, usually I drop everything to accommodate, but i can't, there's too much to drop and the sound of smashing would be too long and loud, so he gets home on his own and wants to go out to lunch with me, I'd love that, it's been our little treat when he's off, but Jonah has school, but what exactly is he doing home today? This place doesn't work like the old place where Griffin goes to school without a second thought, he goes to school sick because he doesn't want to ruin his perfect attendance record. I can't go to lunch because the clock is ticking and I have to get into the studio to get a little work done, because I got a big wholesale order which is great, and there are a few stores I need to stock up so I at least have some consignment checks coming in but not much gets done, because Jonah's school bus will be coming soon. My car tires need air.

It's Wednesday, Dad's night, so Jonah's supposed to be at the after school program, but he's too stressed, because in this place, he doesn't like school anymore and has chosen to come to work with me instead until pick up time... so back to the studio because it's farmer's market night and the gallery is open. In between rushing around, I'm receiving birthday wishes and small gifts which seem surreal, birthday? what does that mean?... irrelevant, does not compute.

Even less so because the only ones who don't know it's my birthday are my own children, because their father never tells them... not even when she's cancer-mom... it doesn't occur to him to take them shopping even for a card, no, that would entail an effort, forethought, inconvenience, it might require a conversation with them, no, he likes to get home and pop a cork and relax. In fact, while it's his weekend coming up to have the boys, he's asked me to have them saturday night because he needs to unwind "burn off some steam" with men from work, scotch and cigars.

I'll be reviewing my cancer class notes, no time for scotch and cigars for me. This is a strange place I've landed. Need to fill those orders, but I'll be working all day Saturday in the Gallery, and next week holds a follow up with the genetic counselor on Tuesday and surgeon on Friday, oh yes, and that minor surgical procedure on thursday which I'm told will knock me out for a day. And that big wholesale order which is swell and makes me happy, but I've barely produced anything in a month and how do I fit in work around all these appointments when the school bus keeps coming at 2:45?

I went out tonight and it was fun, so little time until i'm immuno-suppresed but then I came home and so many phone messages and emails, another Craftopia in little more than a week... details, details, so much to do and chemo starts two days after Craftopia, two appointment filled weeks and I really just want to go to the Apple store and get my iPad because that's my happy thing, but when? when am I going to get there? and how the fuck did I get here?

As I was out tonight, I had a margarita and pretended it was summer. It's not summer. In this crazy place I feel fine, I've rarely felt better, my blood work is perfect, I'm healthy, I want to meet a man and go on a fun date, hold hands, put my head on his shoulder. Small things, simple things, and it's my time, I'm fine, I'm in the game like everyone else, living my life, except that suddenly I'm not and I have to go to chemo class.

Tuesday, November 29, 2011

Free Float

Free floating anxiety mounting. I feel like I'm made of glacial water... cold, cold, shiny water and the structure might slosh into a puddle at any moment. I find myself sitting, paralyzed, just trying not to disintegrate, all the while I know I have things to do and busy is better. Knowing and doing are two different things.

I loathe free floating anxiety because you don't know exactly what it's about, so don't know where to direct your energy to assuage. I guess it's the feeling that everything is out of control, that I can't keep up. I'm hoping the planning meeting with the oncologist helps... maybe I just need a plan... maybe the waiting is worse. Except I know chemo will be even worse than that, but maybe routine, any routine is better than all this thrashing about, running this way and that, meetings, tests, results, maybe i was less anxious during all of that because i was too busy.

Maybe the known, even if awful, is better than the unknown... when all of this started I was finally settling into a long-anticipated new routine... maybe I still need that... some semblance of routine.

This morning I shoved a tear stained 10-year old out the door towards the school bus, because it's art class day. The most creative soul I know hates art class, it stresses him more than math does. "today is going to be a horrible day" makes my heart hurt. When I tried to gently communicate this to the teacher last year, asking her to keep an eye on him, see if perhaps there were any way to mitigate his stress {and I rarely get involved in micro-managing the school stuff, I leave it to the professionals, but the poor kid was just going to pieces}, she responded by promptly calling him out into the hallway in front of the class and saying "your mother says you hate art class, why do you hate art class?". This art teacher, high and mighty with her PhD who insists she be referred to as Dr. was not a whole heck of a lot of help.

So maybe I should choose to worry about that today... focus my anxiety so that maybe I can do something about it. Or maybe I'll keep obsessing about how much I hate 3d movies, how much I would have enjoyed HUGO, if it had just been in good old fashioned 2d or 1d? what the hell?... does this make me an old curmudgeon? I don't think so, 3d is a bad, bad, profit driven idea, we should Occupy 3d... maybe I'll think about that today.

Monday, November 28, 2011

Good Heart

I have a good heart. Literally. I have the scans to prove it. And now my tips of the day: Hugo is a really good movie, but skip the 3D and Homeland on Showtime is a really good show, watching with Griffin is my current guilty pleasure. Love Damien Lewis.

Trickster

Last month I went to my 30th HS reunion, it was too surreal an event to pass up. I pretty much blew out of town {suburban NY} 30 years ago and never looked back. It was only many years later that I realized what great friends I had and how I didn’t value them, lumped everything in with the awful which was my family and my teenage angst {which lasted a bit longer than my teens, I’m afraid}. Most of the names and faces on the Facebook page I didn’t recognize, but a handful of folks had been on my mind for years and I wanted to see them, acknowledge them and also catch up with them... see where life had taken them. And I felt good about where I was in my life. I felt, maybe for the first time, really clear on who I am, uninterested in impressing anyone or being anything I’m not... I am what I am what I am, and that ain’t so bad.

A simple, yet eye opening moment of realization came with the ease of just tossing a sleeping bag, toothbrush and change of clothing in the back of my car and taking off, just me, unencumbered by anyone else's stuff, needs, snacks, drinks, activities. Sweet quiet in the car and my own choice of tunes. It was a rare weekend where my pending-ex was willing to keep the kids for not just a whole weekend {rare enough}, but a 3-day weekend.

It can take me a long time to make up my mind, but when I do, I’m all in, and that’s how it was when I had babies. When I fall in love, it’s all the way in love and I’m steadfast and true, maybe a little too much so and I’ve never been in love like gazing at my baby's face. I should have balanced things better, kept a bit for myself, but for 16 1/2 years it’s just plain been all about the kids. Well, sans the past 4 or 5 when I finally had to start getting out and about a bit... taking a few classes at RISD and starting my business, all in the tiniest, incremental steps, it’s only in the last 2 years or so, it’s become as consuming as it is. But once the school bus comes, I’m all theirs and so traveling, taking more than a few hours for myself is something I’ve forgotten how to do. I’m at their beck and call 24/7 and more often than not have to leave work to bring something forgotten to school or run some kid-centric errand, to which I never give a second thought. I’m their mom, all in.

So having a change of scenery was breathtaking and I felt empowered, I felt healthy, I felt energetic, I felt good. I had a lovely time at the reunion and staying with friends, even managed to hook up with some college friends on the way home which was really, really special.

I felt optimistic... about this new stage of life, about letting go of my kids every other weekend and feeling excited instead of sad about that time. I was going to start travelling and ticking off my list of friends to visit in other places. Adventure time.

It’s so incongruous that all the while I had cells in my body dividing madly, surreptitiously, and as healthy and good and powerful as I felt, I was horribly sick, my body going haywire trying to kill itself. We all obsess about each ache and pain... is that headache a brain tumor? What’s with the tingly feet or achy wrist, the swollen gland, likely nothing... we’re used to worrying about our symptoms... I didn’t have any symptoms, I wasn’t worried about anything. Cancer is the great deceiver, the trickster. And despite feeling fine, well, wracked with anxiety and worry at this point, but feeling previously physically fine, I have to poison myself to stay alive, I have to make myself sick. It’s still incomprehensible to me, so much just doesn’t make sense, but I guess that’s the secret to life... it doesn’t make sense... don’t expect it to.

Saturday, November 26, 2011

Pie

Pie for breakfast, pie for lunch, pie for dinner. life is good.

I have an oncologist appointment on wed. morning when all tests will be in and we will develop a definitive plan... until then, I eat pie.

Thursday, November 24, 2011

OMG, there is something better than an iPad

What is better than an iPad? Not a trick question, because I just found out there is actually something far, far better than an iPad and that is an iPad given to you by 30+ kind, caring, generous proactive souls. Who says artists aren’t organized? Someone who doesn't know the people I know, that’s for sure. Jonah said, “wow mom, real tears of joy, I’ve never seen those before.”

I don’t even know what to say, I’m blown away, I’m speechless and when's the last time you saw that? It is a wonderful thing to have a tribe, thank you for being my tribe.

I think my cancer can’t compete with you and all the positive endorphins I’ve got swirling around my brain. I think an act of kindness is far more powerful than a cancer cell and with so many caring people and my clear scans, I feel like I can do this. So screw off cancer, I think you picked the wrong host.

Happy Thanksgiving from one who is mightily thankful!

Wednesday, November 23, 2011

Semen

There’s an event I like to go to on the last Wed. of every month called Pecha Kucha, and sorry, but you just pronounced it wrong... way wrong -- you have to hear someone say it minimum 100 times before your brain can process it, because it’s a Japanese word, and it means “chit-chat”.

Pecha Kucha originated in Japan and takes place in cities around the world, including Providence, at rotating venues once a month. There are an assortment of presenters each time, often working from a loose theme from which they do a slide presentation. 20 slides and 2 minutes to talk on each one, not a slide or second, more or less. You never know where someone will go with that. Some are banal, some are funny, some are informative and yes, some are brilliant because the brilliant walk among us.

As soon as I heard about PK last year, I was there, because it is so up my alley and Wed., is my only night w/o the kids and I try to get out, so PK is perfect for me. I’ve gotten brave and I’ll even go solo {but not brave enough to present} if I can’t find anyone who will go with, and luckily, I always run into someone I know to chat with, if not glom onto entirely, because here in Providence, you pretty much always run into someone you know.

Last month a feisty, warrior of a twenty-somthing gal got up there and blew the roof off. Seriously, this chic had it going on. Her presentation was about her cancer treatment {concluded, yay!} and she was hilarious. Cancer-girl had moxie and wit and immeaurable exhuberance and bravery, and the most beautiful lack of boundaries. I love anyone lacking boundaries because around them, I’m much less likely to get in trouble {well, certain boundaries anyway}.

One of the topics Cancer-girl landed on was the nasty thing they make you drink in mass quantity before a CATscan. She was wondering why it was so over-the-top disgusting and her mother {did you get that? her MOTHER!} pointed out that it was because it had the color and consistency of semen. And it’s TRUE! And now I learn first hand that they add insult to injury and call it “creamy vanilla smoothy” and serve it up at room temperature in a big ugly plastic bottle. They should really avoid the word “creamy” when dealing with this this stuff {i really can’t call it a beverage}. This stuff that I nearly choked to death on a few days ago trying to chug, to just plain get it over with. Now I’ve got nothing against semen, it gave me children and I am rather fond of men, I've got no problem with it’s delivery device, but 36 oz. straight, with no heavy petting and then again an hour later, in a hospital waiting room, NO THANK YOU!

I know I already have cancer, but if ever there were good cause for some red dye #2 and refrigeration, this is it.

Aside from that, I’m sitting in the waiting room with the loud TV waiting for my heart scan... gotta kill 20 minutes between injections and then I’m done! My month long marathon of tests will be concluded and next week I meet with my oncologist Rochelle Rochelle and settle on a plan. I may only have a week until chemo starts and I plan to make to most of it. Pie for breakfast and getting out and about as much as possible. I’ll be at the studio for a few hours tonight during the farmer’s market and I’ll also be in on Saturday, so I hope I’ll see some of you then, when it’s a bit less chaotic {and emotional} than Craftopia.

Tuesday, November 22, 2011

Hobos

My morning was spent having an MRI and my plan for this afternoon was to meet Jonah at the bus stop with the car and then zip over to Griffin's school, fetch him, and get them to the Pediatrician's office for their yearly checkups. To get an after school appointment takes months so you don't just blow these off. Just as I was about to leave, my "medical advocate" called me with the good news about my scans {after I kindly left her about 6 messages each increasing on the hysteria scale}.

I just HAD to do a quick blog post and then I heard the bus go down the street, so all flustered, I ran outside and promptly locked myself out of my house and car. The neighbors have a key, so no problem, except Griffin used it last week and didn't return it because he never can seem to keep a house key on him, let alone remember to return anything, and the other neighbors who are keepers-of-my-key weren't home.

So my very kind and generous neighbor drove us to pick up Griffin and then to the Pediatricians. I just can't seem to go for half a day without being in a doctor's office. She ran some errands while we were there and then had to leave to pick up her own son, so Griffin hitched a ride with her back to school for the all important end of football season ritual The Burning of The Shoe. I don't know what this entails, if there is an actual shoe involved or who brings the matches... I don't think I need to know. This left Jonah and I stranded at the doctor's office. It took many, many phone calls until I found someone who could pick us up, but until then, Jonah thought it was fun being "hobos". We pretended we were going to hitch-hike home or live in the lobby of the office. But alas our benevolent driver fetched us and I'm really happy to be home sweet home.

Better Heart

Bone scan is CLEAR, CAT scan shows NO evidence of metastases!!!!! Awaiting MRI results of both boobs which will show if it's just the one tumor and get a really accurate measurement. Tomorrow is a MUGA scan of my heart which entails another day of radioactivity and dye, it seems your heart must be working well for chemo. My heart is definitely working better now than it was this morning.

Narcissist Tango

I'm feeling a bit narcissistic with all this me, me, me... it's why i don't enjoy many blogs. Just want to let you know that I haven't forgotten about Occupy Wall Street {or Providence}, or the budget deficits, or global warming... I'm still recycling and I still care {very much} about what's happening with YOU. I know very well that I'm not the only one on the planet going through something scary and sucky... we're all going through something. XO to you too!

Monday, November 21, 2011

Radioactivity

Miraculously, I made it to the hospital at 9a.m. to have a shot of some type of radioactive substance necessary for a bone scan. Apparently, I've been radioactive all day, but sadly have not developed any super powers or corresponding cool costume.

2 hours running quick errands then back for the actual scan... it takes one a few hours to become appropriately radioactive. I've already learned to ask them to turn the music off. The low hum of the machines is relaxing, but the tinny, transistor radio all the technicians seems to keep droning in the corner drives me nuts. One Steely Dan song is like a month in hell, I prefer the quiet.

Before the bone scan, I had to start gulping the "Creamy Vanilla Smoothie" which is barium, necessary for the CATscan. This beverage of torture would do better without the word creamy involved... w/o a name altogether, please, let's not pretend we ordered this at the café -- it is NASTY. I tried to drink it really fast and almost choked to death in the waiting room. Halfway through the bone scan I had to drink the 2nd bottle and then off to the CATscan room.

The machines are amazing looking. Steve Jobs would approve... very space age and streamlined. Nice fluid shapes, compatible with the sounds they make, the rooms are dark and peaceful until you remember why you're there. You get an IV beforehand and a couple of times they inject dye which sends a stream of warmth through you that, when it gets to your bladder, absolutely, positively, makes you feel like you're peeing. I am SO grateful they warned me about that, but it felt so real, i still had to check when they were done.

My legs felt heavy walking home... I think it was all the chemicals. Felt woozy and exhausted and came home and fell asleep for 3 hours and felt pretty sick when I got up. And I realized that was nothing compared to how I'll feel once chemo starts.

Trying to stay calm and positive before I get the results tomorrow and I don't think having an MRI will help distract me, but at least it will keep me from staring at the phone. I feel desperately in need of these tests coming back with good results because the contrary is unthinkable... too shocking to contemplate, so i'm waiting for my good news.

Sunday, November 20, 2011

Been a go-go

Exhausted but exhilarated after a crazy busy weekend culminating in our most successful Craftopia yet. The new space worked like a dream and I am unspeakably grateful to so many supportive friends who went the extra mile to get the event in gear. My {somewhat} efficient brain seems a soggy pom-pom rattling around a big empty space, sticking to the sides and then rolling back down. This show wouldn't have been a go-go without so much gracious assistance. I lack superlatives for my partners in this endeavor and my new studio-mates who are picking up the slack I keep leaving behind.

I remember the day chatting in the shop 2 years ago, we three... I'd been pondering putting on a show, so many people kept suggesting it and it seemed doable, enticing, but there were a million reasons not to, so for the zillionth time, I said, "nope, not gonna to do it"... and just then a spunky old lady came up and said "I just love coming in this shop, you girls should really put on a craft show that's like this but bigger." The timing was too much, so I looked at Soapy-K and Dar {because they were not only right there, but also, the only two I could envision partnering up with} and said "what the hell, I'll do it, but I can't do it alone, are you in?" and they said "sure". I said, dar, you're paperwork, and organization, K-2 you're blogging and head cheerleader, it was as simple as that. Through four events, we've each found our niche and our roles, we've learned so much and met such great people. Each time has been more seamless than the last. Today it was exciting to see a photographer from the Providence Journal there and we were sponsored by the Providence Phoenix. I received a lovely invitation to be on the committee to reinvigorate the crafty portion of the Pawtucket Arts Festival which sadly I had to decline, but it is sure nice to be asked.

I was touched to see favorite gallery owners coming to visit today and friends from so many different parts of my life coming to support the day. Kept getting choked up which, i kind of hate doing. It's taking a lot of energy to stay in the moment and keep it together.

I got to see crafty friends and spend a little time ogling their iPads. Louisa's case is definitely the winner, coolest damned thing I've seen. White iPads each and every one, honestly, i didn't even know there was a black iPad I think someone made that up. I don't think a black iPad is a good idea.

So tonight I'm kicking back watching the most recent Pirates of the Caribbean with Griffin and it's god awful... but I'm not required to move, so it's fine.

Tomorrow at 9 a.m. I trot over to the hospital to get shot up with radioactive something or other, chill out for 3 hours and then have a bone scan. Let's hope it will be as successful an endeavor as today was.

Saturday, November 19, 2011

JuJu and Goody Bags

I'm at the shop today {my new lux shop with wifi!}, alongside my beloved farmer's market and all it's positive juju. I felt really dreary this morning, mopey and all hang-doggie, and in under an hour I'm revitalized. I'm going to plan all my treatments around the goal of not missing my Saturday markets, they always make me feel better. The shop isn't even busy, but being here lifts my spirits.

Want to know what else would lift my spirits? A goody bag. If you have children, you know that when you leave the hospital, they give you your baby AND a goody bag -- filled with formula and diapers and binky's and yeah, it's propaganda, they want to hook you on the commercial products, but still, it's a goody bag and it makes you happy.

When you leave the hospital with your cancer diagnosis, that's all you get. If nothing else, I think cancer should come with a goody bag... with an iPad in it {obviously}.  Mr. Jobs should have seen to that before he left, he of all people would understand the life-affirming, mood-lifting effects of sublime design. And the need for reading material on demand, in waiting room, after waiting room, after waiting room.

I dream of iPads because it’s much better than dreaming about stupid cancer. Cancer is not a sublime design, it’s messy and yucky, it’s a disharmonious interloper with no grace or purpose. iPads are beautiful, so i will dream of iPads.

Friday, November 18, 2011

Ethnic Identity

Only 10-15% of breast cancers are Triple Negative and these occur mostly in younger women {i'm not all that young}, women who have the bad breast cancer gene {unlikely, but the test will be back in a few weeks}, and black and hispanic women.

So there it is, my secret's out of the bag... I'm african american. Admit it, you suspected it all along, WG only likes me because i remind her of her beloved Michael Jackson.

Schedule from Hell

Met with the oncologist today, Rochelle Strenger. Do you remember the Seinfeld episode about Rochelle, Rochelle, the hot new movie everyone HAS to see? So continuing the movie theme, my doctors are Dr. Marlene at the Beach and Dr. Rochelle Rochelle.

It's a good thing my appointment was expedited... we are in a rush. Aside from Turkey on Thursday, next week holds an MRI, CATscan, Bone Scan and Heart Scan, each on different days. My second tumor board meets on Nov. 29. My birthday is the 30th and my driver's license expires, so I'll be spending it at the DMV because when the heck else am I going to go? {and i kinda want a new photo before I'm bald}, and then first week in Dec. we start chemo.

Hello universe, are you serious? Did you really have to throw the DMV into the mix, because while i'm an understanding soul, that just kind of adds insult to injury.

Thursday, November 17, 2011

Daily Trajectory

So have you noticed that my posts start out cheery and punchy in the morning and by evening, it's another story? I know i'll feel better tomorrow, but picture this... i have no food in the house because you can't grocery shop when you're at the doctor's 37 hours a day, i burnt my popcorn, my printer won't work, and i'm about to eat a bag of frito's for dinner -- that is just sad. I think you should go out and buy me an iPad, because i think a beautiful iPad would make ANYTHING better.

You might want to start only reading morning posts, I'd understand.

Downhill Racer

Every appointment has brought more bad news, i'm starting to feel like i'm starring in a black comedy and i'm the stinkin' punchline. i'm also no longer capitalizing my i's... life is short, capital letters take time, and unless they begin a sentence, i'm considering them expendable.

I learned today that i have what's called Triple Negative Cancer. The negatives refer to the hormone receptors, so all the wonderful new, hormone blocking treatments are off the table. It is also the quickest growing, most aggressive type of breast cancer. Seeing the oncologist tomorrow. I was going to throw in some snarky "yay"s, but i can't even be sarcastic about this -- i'm snarkless.

Believe it or not, there is something called a Tumor Board... 20 or so various medical professionals in a room looking at your slides projected on a screen and discussing them and best course forward. I'm seeing an oncologist tomorrow and most likely it will be immediate chemo, then surgery, then chemo, then radiation. a little more than i'd bargained for {and it looks like capital a's are now optional as well}.

I did NOT know that 40% of cancers don't respond to chemo... that scares me. Honestly, maybe i'm a little slow on the uptake, but i've not been truly scared until now and currently, i'm three steps past scared, well into terrified.

I thought cancer-shmancer... sucks, yeah, but i'm tough, it will be a god awful year and then i'll be fine. One year. I was willing to give up a year of my life to cancer, I didn't expect it might want a whole lot more than that.

Birthers and Minions of Doom

The blog is being wonky, it' keeps making my "followers" disappear, that's not nice at all.

Have you signed up yet? Because me and my blog want a lot of followers. I told a friend that I wanted followers so I’d feel like Hare Krishna, but maybe it’s more like David Koresh or Mr. What’s-His-Face, the King-of-Koolaid... Jim Jones that’s it. And wait a minute, his name is an alliteration just like mine, spoooooooky.

How do you even know i have cancer, this could all be a cunning ruse to suck you into my blog where you’ll be bombarded with subliminal, mind-altering messages -- in the font, the letter spacing and most certainly between the lines. How do you know it’s for real, have you seen my official biopsy report, the long form OR the short?

Maybe I’m just toying with you, oh my, that would be truly sinister. Simon Barsinister and where, oh where, is Underdog?

Naw, what I'm doing is procrastinating. I have a stack of papers 1/2 thick to fill out before my genetic counselor meeting this afternoon {i mean, homework, come on... not fair}, a big pile of laundry to do and stuff that needs to be lugged over to the studio for the weekend. None of these things are appealing so I'm amusing myself and wasting time : }

Wednesday, November 16, 2011

Awestruck and Crafty Chics

I am overwhelmed by the support and love in my life. From my closest, unbelievably dependable friends who have not wavered and who's presence I feel every minute of the day, to neighbors and colleagues and my amazing crafty community. I love that us entrepreneurial and crafty chics can stick together, I am moved past description that one of the Craftland honchitas has offered to cover my shop should the need arise, and a sweet visit from the lovely Ms. Rag & Bone Bindery who's HQ is down the road, my Craftopia partners picking up the slack without missing a beat, the Festival Feter's promoting my show when theirs is just a few weeks away, my studio-mates, incredible and so generous and patient and kind. Emails I've received from near and far. I feel like if I have all of you in my life, I must be doing something right but that diminishes my gratitude not a whit.

There is just something so special about our town {that pretends it's a city}. My pediatrician lives in my hood, so it takes a simple call to his wife, who I also count as a friend, and he stops by after a 14 hour day to chat in my kitchen about the best ways to talk to my boys about this, alleviating my anxiety and arming me with really good information. My neighbor and bus-stop pal's oncologist husband, who always brings his {adorable} girls into my shop, picks up the phone and my oncology appointment at a completely different hospital gets expedited. Everyone, so kind and generous of spirit, I barely know what to say.

I am feeling so much better after a quieter day, the marbles in my head aren't rattling around quite so much and I'm determined that through this my house will be festive and lively. The usual potluck dinners and gatherings, y'all know I like a busy, happy house and I see no reason why it not stay that way, for me and for my guys, for all of us. I don't want people dropping off food, I want them to sit and eat with us and play games and watch movies. All of this generosity around me is making me feel protected and powerful, I'm ready to get my warrior boots on. Profoundest thanks to all.

So... tomorrow is genetic counselor which I think is a waste of time, I highly doubt I have the gene, but I am being compliant, Friday is oncologist, Saturday is work and decorate for Craftopia, Sunday IS Craftopia {yes, because when you find out you have cancer, you really SHOULD throw a party for 3,000 people}, next Tuesday is MRI and Thursday is Thanksgiving and by early December there should be a plan in place. A cunning, crafty plan. Instead of Vermont this year, My sister is coming here to cook. Nothing makes her happier, I don't think, than cooking for a hoard of people and that one can COOK! So if you don't have plans, call me, and join us for dinner, or just stop by for dessert or any time throughout the day. I have my heart absolutely set on a fun, festive, busy, bustling, happy day.