Testing the boundaries of normal social behaviour

I've laughed more in the past couple days then just about any other time in my life. Well, I take that back, I can remember many many laughing fits...many...but these past couple days with my new wigs has been right up there in the top 10 best and silliest moments of my life. The pink wig and the white lady blabla wig have been part of the collection for a couple weeks now, but there has been some recent additions that are too over the top, too ludicrous to try and describe...although you know me by now, so I'll try my darnedest.
A couple years ago, Ted was a hippy pimp for Halloween. Part of his wonderful ensemble was this giant blondish/greyish scraggly, did I mention huge, wig. I would say it extends a foot in every direction. After putting on dark red lipstick and some gaint earring's, thanks to Gina, I went to work in this wig. Needless to say, there were the looks, the stares, the man running into the wall. It was maybe the hardest I've ever laughed on the inside...and all day long. The next night, Ted put it on and just happened to have the unshaven scraggly beard to match. He could not have looked more like a burn out...cheech would have been proud. As many of you know, Rob has a natural fro and the other day I picked up a matching girl fro wig. So there we were, fro family robinson, out for a night on the town. People were in shock, again with the stares, the awkward side glances and the unabashed gawks. People were much more brazen and vocal...it was after all the mall, at night, which = teeeeeeeeenagers. My favorite moment was when a group of about 10 pre-teen to teen girls saw us come off an escalator. They asked Ted if his fro was real as they giggled away, they then asked me if mine was. I ripped it off my head and said...I can't even remember, but something to the effect of "what do you think?". They screamed in what I think was a combination of horror, fright and silliness. One giant collective scream, unlike I've ever heard before. That scream certainly cleared our meager atmosphere and is now traveling on whatever little particles it can cling to in the time space continuum. I'll never forget the silliness. Ted and Rob were awesome. I, the one one who can keep a straight face no matter what, was a mess all night. I kept having to say things to myself like, "Corrie, you have cancer for Gods sake, stop laughing, life is horrible for you right now!", but nothing could overcome the swells of laughter, the uncontrollable silliness that kept it's presence on my face.

Going to bat II

I totally forgot to mention how a coworker, Kendra, who has gorgeous locks of long, thick, golden (although now red) curls didn't hesitate for one minute to chop it off and make it into a wig for me. That was very touching. I had a similar offer from the long haired guy who flirts with me at our local gas station..I don't know your name dude, but rock on with your selfless self!

Sara Jane

Is the cutest one year old currently on the earth. Just in case any of you were wondering, I though I'd put it out there. I've gone on and on about my own kiddo's, so here's a shout out to Colleen and her gift to humanity. Thanks for reproducing! As I told her when she was trying to conceive, the world needs more people like her to make more people like her. Well done Colleen! I wonder what she'll be doing in 23 years. Hopefully I'll be able to call her up and ask her myself:)

little things

Ted took the family sans Maddy and me to New Hampshire for the day. I can't travel far from civilization these days, so I stayed behind. After work, I picked Maddy up and took her for a walk around Quinsigamond Lake...perfecto! When the rest of the family came home, Charly brought presents in for me and Maddy...soooo sweet. The girls hugged and kissed and loved each other. We went on with our night, got the girls to bed, cleaned up from dinner and all of a sudden it turned into our own time. I came into my bedroom and Charly had tucked the teddy bear she brought me neatly under the covers. That little bear peaking out from the sheets was put there strait from Charly's heart. She knew it would make me smile at some point later when she wouldn't even be around...it did more then that, it did more then I have words for.

cool breeze in the hot summer

All the windows are open and before I have time to enjoy the physical feeling of this break from the hot summer sun, my mind takes me instantly and simultaneously to all the unexpected cool summer breezes of my past. Those mornings on the river in Colorado, so crisp. We would put our wet suits on, climb in to our boats and train all day in the April snow melt of the Rockies. Backpacking trips with Ted in the White mountains, I would always wake up surprised at how chilly it was having sweat so hard the day before while hiking to that perfect spot..sometimes a nook right off the trail...sometimes a bluff overlooking a never seen before valley. The early summer breezes of my childhood when I'd stand on the block at a swim meet waiting for the gun to signal my frigid jump into the pool. Could all these memories be from one life? I feel like I've had many opportunities, many lives, many interpretations of the same phenomenon and they always leave the exact same familiar smile on my ever changing face.

spiders

So I may have vascular tumors growing throughout my body right now, but what really scares me are spiders. I'm more afraid of those eight legged masters of fear then I am of cancer. We used to have spiders all over the exterior of our house. They would wait until night and then creep their way down to lay in ambush near the lighted windows and doors. When you walked in the door, they'd drop on your head. When you'd let the dog in, they'd be in her fur. Every night that I came home after dark I had to face those damn spiders. Sometimes I'd call Ted and have him open the door if he was home first. But then there were those nights...those dreaded nights when I had picked up the kids, gone grocery shopping and come home to an empty house. That meant many many trips through the door at night with bags and kids and other obstacles that made one linger at the door. The spiders. Would drop. On my head. On my shoulders. In the bags. Spiders. I called an exterminator and he sprayed lovely chemicals that made the spiders die. I love that man a little. He doesn't know it, but I would have payed him a million dollars for the relief he gave me. Too bad he can only work his magic on the exterior of houses.

Riding with Robby

Instead of Ted taking his weekly jaunt out to get Robby, I drove out to get him. Partially to have the excuse to listen to some music and have a little time by myself, partially because Maddy's sick and it breaks my heart to hear her call for me knowing that I can't go near her since I'm susceptible to everything and partly because I just love hanging out with the boy. He had no idea that I had just shaved my head and his reaction was priceless. He loves the mini mohawk....I knew he would. I was so upset when I realized that my hair wouldn't last until today, I wanted him to have the first go at it. Oh well, we had fun yesterday all the same.
We took the long way home. Rob put on Dillan and the sky gave us a beautiful setting in which to relax and enjoy the music. I can not overstate how cool I think it is that he lives for the same music I absolutely needed to get through adolescence. Robby and I have always been close, we get each other. On our way home, he was pointing out wisps of fog and clouds that made grey look so alive while I was picking out lyrics that I've had in the back of my mind for well over twenty years, lyrics that make you realize that there are depths to human emotion that have to be extracted and packaged by people like Dillan for people like me and Rob to get the most out of life....and we do!

who needs hair anyways

It's been a long time since humans needed hair. If you really think about it, hair is a pretty silly thing to have on your head. How much money do you spend every year on cuts, dyes, brushes, shampoos, rinses, clips, gels...you name it and they'll sell it to you. In the end, the majority of people are insecure about their hair...hence all the money to try and get it to look good. All the same, I wasn't very excited to come home tonight and get shorn with the same clippers that used to keep our dog from getting dreads. Ted offered to buy brand new special corrie clippers, but I declined. I decided that this was just another step down dignity lane and it was fitting to be shaved with dog clippers. When we got home, Ted took a long hot shower. Maybe he was delaying the inevitable task at hand, maybe he was lost in a steamy day dream without balding cancer people. When I heard the running water stop, I knew it was time to say goodby to my hair and hello to my scalp. Ted emerged from the bathroom, clippers in hand and totally bald. I burst into tears, it was so unexpected and sweet. I was very moved by his act of solidarity, it made the moment light...not at all unbearable. So there we stood, me and Ted and the girls with grandma taking pictures of shave fest 2010. I had him leave a mini mohawk just for fun. I don't mind it so much. As I've found throughout this whole experience, each of my dreaded events, whether it's been surgery, chemo, hair loss, crappy ass food, is always worse when it lay in the future then in the past. Now I get to have fun with my wiggies...just got a white bob that I can draw on...how fun is that!

Hairs on my pillow

I wonder if I spay my hair with aquanet, would it stay stuck to my scalp for the next eight months or so? Every day, there's more hair on my pillow. It's as though I get up but bits and pieces of me stay in the past, refuse to move on with me. Body parts frozen away at Dana, hair en route to europe, dignity being autoclaved from the scope at umass. It's a challenge to walk in the same shoes that once fit a healthy confident woman in the prime of her life. They still fit, but they carry a balding, mutilated cancer patient. On the bright side, Charly and I have major fun plans for my bald head including but not limited to stickers, washable markers and shaving cream wigs. I had my last "treatment" the day before yesterday and am starting feel what's now becoming the familiar side effects. The tight throat, mild nausea and fatigue. Last week, I was letting all those things that lay in wait at the periphery of my focus take hold, grow deep routes inside of my happiness. I had to let it go and start over, get a whole new world with a brand new sun that has never cast light on the weeds of misfortune. After my treatment, I felt much stronger, I felt, once again, that I had done something, anything to stay here for my loves.

my thoughts on doctors

Lump here, no lump there.
the end

ode to a hemorrhoid

Should we go to the beach? The cabin? hiking? swimming? Nah, let's go to the ER and get that bright red blood spewing forth from an orifice which shall rename nameless checked out. I haven't started the chemo that makes you bleed yet, so this episode was particularly worrisome. When I called Dana and described the situation, the nurses words were," oh jeez, get to an ER now", which made it all the more comforting. So off we went, not sure if this was from chemo side effects, from a metastasis to the GI tract or from something unrelated to cancer (although when you try on my shoes, the snugness of fit is due at least in part to cancer). They ran a couple tests and decided to perform a colonoscopy. joy. with a stay overnight in the hospital for the prep. joy squared. If you've ever had the pleasure of prepping for one of these lovely, integrity stealing
procedures, you've also known the pleasure of MoviPrep. It's a Peg350 wash of the entire GI. Good times with PEG. I'll never look at my crystal drops the same again (we use various PEGs to make proteins crystallize). In the end (pun intended), everything turned out to be fine. The bottom line (again, sorry), was that there was an internal hemorrhoid just waiting for the right time to show it's glory. Thanks alot you A hole!

A girl only needs a couple inches to be happy

I was dreading today, the day I chopped off my hair..all 21 inches of it. The funny thing is, I was growing it so long to donate to locks of love...little did I know that I was being drafted into that unwitting army at the same time was I volunteering for the other side. I decided to make a partial wig for myself since I had so much hair. It's ridiculously expensive, but I know it'll feel like home, or some place familiar when I'm walking alone in baldland. Until I get it, I have my fluorescent pink Cleopatra wig and my "I'm trying to look like I don't have cancer and am really normal like you" wig. It may only stay in my head for another week or so, but the couple inches they so generously left behind are much appreciated. After the carnage was cleared away and Charly had a chance to see me, styled and all, she said "you look even more like mommy". I love that child. Maddy also was fine with it, she just looked up at me and said "they take your hair off mommy?" followed by a big hug. I think she's getting used to "them" taking parts of mommy off. Hopefully we'll get a little reprieve!

cleaning the drain (found this one that I wrote way back and never put up..)

Tomorrow I'm getting it chopped. I think I'll miss my hair more then my boob. Tonight in the shower, my fingers took extra long to run from my scalp to the ends of my hair. There's a distinct sound that long wet hair makes when dropped on your back in the shower, you can feel the weight while hearing the gentle slap. I'll be bald for almost a year and then it'll grow back slowly....I'll never have long hair again. Poor me, poor bald one booby me. I'm actually in a good mood, at peace, pretty calm and feeling good. I think I owe it to Robby tonight, he could NOT be sillier...and just in time.

Thank you Ted

Having cancer is not always silly and fun. Sometimes there are dark moments totally devoid of light, as if a black hole suddenly appeared on an otherwise non-collapsed sun filled day. You can almost see those rays of light being stolen from you and the faster you chase after them, the closer into the abyss you're pulled. I was on my way in, pretty deep last night when Ted reached his hand in and pulled me out. I don't know what surface he was standing on, but it was strong enough to hold us both up. He reminded me that I can do things right now to help my babies, and for me, that's the only thing that matters. I'm on my way back to the silliness. Later today, I'm putting together a photo montage that will be entitled "fun with cancer". There'll be everything from silly wigs, to fake boob contests to sexy bathing suit displays....

my girls are cute

And here we go again, are you guys sick of me talking about how freaking cute they are? Right now maddy is buck naked on the leather chair watching Max and Ruby and Charly is laying on the futon in animated heaven. I am doing everything I can to stick around for those little beauties, but in the end, it's out of hands. I do have control over right now though, and I can fill it so deeply with love that surely it'll overflow into the future and keep them strong no matter what. I touched Maddy's face the other day and she looked up at me with a smile. Such a simple moment that might otherwise go unnoticed in a typical busy life. That's one more smile in the world, one more light hearted moment that wouldn't be here if I had chosen the road more followed. Charly's neck screamed out to me to be tickled and I was here to do the job. I could feel her laughter through my skin, into my bones until it reached my heart. How could that be a bad thing? How could life be bad right now?

why do I read the literature?

A tumor by any other name would metastasize so frequently? It really is depressing folks, so I don't know why I do it. But like the mangled pieces of metal, that used to be nothing more then a monthly payment, politely moved over to the side of the highway so as to not interrupt other people who still have lives, the literature always temps me to take a peek. When I do, I see bodies thrown from the cars..they most have not been wearing their seat belts. Those cars most have flipped at least 4 or 5 times...surely there are no survivors. These are no ordinary accidents, most people have never seen anything so gruesome, so how could I not look? It's a bit demoralizing, but I'll get over it..time will make sure of that. I'm considering putting a governor on my pubmed access!

oh yeah, that's normal

So there I am, feeling fantastic day one, day two and half of day three out from my first chemo treatment when boom, my throat swelled up, my chest became congested, I started experiencing shooting pains in my chest and down my femurs. I looked at the list of possible side effects and they basically lay them out in that order. I'm feeling much better now, so it was really just 24 hours of feeling like total crap ( I say as I jinx myself into 6 full months of misery). I add the anti-VEGF in my next round. I can't decide if out of all the possible side effects listed, I'm least looking forward to rectal bleeding or vomiting a substance that looks like coffee grounds.......WTF science, why is it taking you so freaking long to figure this sht out? I guess it makes sense when I think of the projects that we work on for 5,6,7 years to get a PhD...the conformation of one protein. One stinking protein at a time is not going to cut it! OK, I have to stop complaining because my family is harassing me to stop communicating with all of you loves and start watching cheesy TV with them. Night night:)

a day at the beach

I've met the most amazing people because of this ridiculous cancer. Some are new to it like me and others have been living their lives for quite a while, the elders (eventhough some are younger then me), the wise ones with some kept secret that will keep us all alive forever. Maybe it's the cod liver oil, maybe it's the vitamin D, maybe they brush their teeth with their left hand in the morning and their right hand at night...maybe. Yesterday my friend B was in town for her monthly chemo treatment and we decided to make a day of it. After her infusion we jumped in the car and headed to the north shore. We walked around Rockport, had lunch high up on a balcony overlooking the moss covered rocks at low tide. We headed down the coast to Singing beach where we felt the warm sand and cold water coalesce over our chemical feet. We took ridiculous pictures of our prosthetic boobs side by side on the floor board of the car. We were both grateful for the warm weather and friendship. Stranger things have brought stranger people together...as for this group, I'll take um:)

ahh the good poison

I feel pretty damn good about my decision to do chemo (I'm writing this to the future Corrie who may develop a different perspective on the matter....remember...happy??). When Ted and I parked the car at Dana, neither one of us were in any hurry to get out. Up until this point, it's been somewhat in the background. Even with the surgeries, I was just a patient in a bed, not a shhhhhhh cancer patient. From the second we opened the car doors, it felt like gravity had married some stronger force which all of a sudden pulled me straight into cancer. It's not a bad thing, it's a reality thing. At the crack of dawn, the cancer patients queue up for their blood work, their consult and then their infusions. I was the only one there with a full head of hair, the new kid on the block. The healthy looking one, the healthy feeling one. Surely I didn't belong, clearly I should leave the seats open for the "real" cancer patients. They all looked at me with such empathy, such understanding. They knew it was just a matter of time until I took my seat right next to them, which I gladly did, and engage in small talk. It's a little different there, small talk has to do with the weather and chemo and life and death all rolled into one heartfelt sentence between strangers.
The infusions weren't bad, the Gemzar burned, but the abraxane was effortless. Next time we add the VEGF monoclonal, Avastin. As we were leaving, I gave into a pity party replete with "I'm so young" confetti streamers and "my babies need me" helium balloons. It didn't last long though and soon all was right with the world....in other words, I spent the day with those angels and their daddy and grandma and brother. I can always bring myself back to the present when I realize that that's were I am. The stronger I am right now, the more I can teach my kids how to be strong in the face of adversity, and more importantly, how to be silly no matter what!