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.

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.

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.

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.

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!

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.