Tuesday, February 19, 2013

Sweaty Pits to Brunswick Maine

A couple of years ago, I was setting up for an outdoor show on a very warm morning. Setting up is hard, sweat-inducing work and I realized I’d forgotton to put on deodorant that morning. Sweaty, sticky pits is something that is just intolerable to me, a true misery. I’m not concerned about odor, I’m not particularly stinky, it’s that awful sticky feeling.

That crazy lack of boundaries and I lamented my situation to my neighbor and instead of thinking I was nuts, she said “I can’t stand that, I bring deodorant everywhere I go, do you want to borrow mine?” She thought I might be put off by the non-politically correct hygenic aspect of it, but she was wrong, hygene doesn’t play a role in sweet salvation.

These years later, I sell that person’s work in my shop and count them as a friend. Friendships begin under the oddest, unlikeliest of circumstances.

I was in the shower the other morning and started to shave under my arms for the umpteenth {umpmillionth} time and it occurred to me that if the hair follicles were no longer functioning, maybe the sweat glands would be dormant too and I’d never need deodorant again. I have some experimenting to do.

I had to stop at CVS this afternoon to get a few last minute supplies before the tall one and I hit the road. He was out of deodorant and unlike at that summer show, he won’t use mine. Maybe because it has a flower on the label, maybe because sharing is gross, although he has no problem using my bath towel, even though it’s pink, signifying “girl”, meaning, paws off, use your own damned towel, because you are stinky.

Flash forward and, we are now in Maine, just the two of us having discovered on the ride up that we have much of the same music on our iPods! Newly licensed, I was the passenger for the first time for part of the way, I stayed much calmer than I thought I’d be and I think I was a pretty good “back seat” coach. We’re staying in a beautiful Inn and we'll visit three colleges in three days. Colby, Bowdoin and Bates, with Bowdoin having become his absolute dream school and let the realist in me say... reach school. Over the years, I’ve payed no heed to the coaches singing his talents, suggesting college play, “bullshit” being my most common response, as there are high school athletes at every school in every town, in every city, in this great, big, giant, competitive country, many with fanatic fathers and private coaches, and yet lo and behold,it seems there may be some interest in my boy. I would love to stand corrected! And he is the luckiest person I've ever met.

I’m learning as I go, but it seems that high-end academic schools with Division III {lowest division} sports need athletes that at least come close to their academic standards. Add in the Lucky 4, the four extra inches that make him a 6’4” lefty quarterback and pitcher and that he’s rocking a 3.8 gpa at the moment with four AP classes, we are meeting with the coach at Colby tomorrow and waiting for a call from the one at Bowdoin who our coach tells us is very interested after seeing his film and grades.

We had dinner tonight at the pub at the Inn where we’re staying. We were seated against the wall and near the end of our meal a couple came in and sat at the next table. Turns out it was trivia night and as we got talking to them, we ended up playing the trivia game together, unofficially contributing answers. Turns out octopus’ have three hearts and Chow’s have black tongues. There was a large, really obnoxious table of people in the middle of the room who seemed quite cozy with the folks running the game, so we started bonding through a shared axe to grind, annoyance with this group, so true confessions... we cheated. G had his iPhone and he looked up a couple of answers, turns out though we would have won without his help because we won by a lot and he and I weren’t officially on their team, we were “innocent” bystanders mumbling out answers, of course, that still makes us cheaters, but it was really fun, we totally kicked everyone’s ass including the 2nd place noisy group which didn’t make the game leaders happy, so they pretty much smacked down the small pile of money on our neighbor’s table and that was that. A quiet night in our hotel room turned into a really fun evening with a lovely couple who told us what a fabulous place Brunswick, Maine is and that when Griffin goes to Bowdoin we should come visit them. A pretty and very competitive obstetrician and her cute and sweet physical trainer husband, who we bonded with by cheating at trivia, odd and unlikely circumstances. A perfect day, one of the things I thought about in the chemo chair was not being able, not having the energy or stamina to do things like take college trips with G and here I am, feeling great, happy as can be, the only difference is I'm staying in a nice hotel, not a crappy motel cause if life is short and you only get one... I'm taking the nice hotel route. As a bonus, G, for the very first time, I think, understands why I always talk to strangers. It used to embarrass him, but slowly, I hope he’s learning that some boundaries are for suckers, talking to strangers makes life richer, literally, as they insisted on sharing the pot with us, we're $15 richer.

Saturday, February 9, 2013

The Upside of Stubborn

I’ve read, and I know to be true, that after experiencing a stillbirth, people have very different reactions. Some never want to think about being pregnant, and taking that chance at heartbreak again. Some are damaged, or traumatized into paralysis and devolve into chemical dependency or plain old anger, many divorce, some get plain looney, some spend the rest of their life "honoring" that child, and some refuse to take no for an answer. I fell into the last camp. My daughter will haunt my heart until my last day, but from the minute I lost her I began planning and plotting for another baby. Losing that baby made me so clear on what I wanted and the meaning of life and what was important and how life was a gift, all those nauseatingly corny things, true, true, true. I learned to take nothing for granted {that’s why cancer is so redundant}. I wanted to adopt, but there were roadblocks and my spouse was soundly in a different camp. Every night I laid in bed dreaming of the day I would bring my baby home, how it would feel to nurse her, hold her in my arms. Time passed, nothing happened and the fertility docs said I’d resoundingly flunked. My FSH was high which meant no more eggs, no more babies, fertility drugs would be useless, there was nothing to ovulate. I went for a second opinion to a really nice guy who headed the fertility dept. at Women & Infants and he said that having a baby for me was a million to one chance, that I’d have a better chance of winning the lottery and I just couldn’t plan my life around having another baby {oh, those statistics}. In effect, I was told that I had 100% chance of never having another baby.

Maybe I was insane at the time, but not for one minute did I accept that I wouldn’t have another baby {despite the statistics}. I’m not usually the denial type, in fact, I absolutely suck at denial, but for not a single night did I go to sleep thinking about anything other than my sweet future baby. I obsessed over names, not infertility, I designed baby announcements in my head, her first birthday party, I liked the name Diana, for the warrior. I spent more money on pregnancy tests than I care to admit and I always did them a little too early, I was so desperate for a line. I’m sure friends felt sorry for me, and thought I was nuts, but have I mentioned my son Jonah? My beloved? My soulmate? My sweet baby boy? The only thing I got wrong was the gender which he cleared up for me about 4 months along by sending me the most powerful burst of boy energy and from there on in his name was Jonah, my sweet Jonah.

I don’t believe in god, or fairies, or miracles, I believe that I willed that child into existence. I believe perhaps we are more powerful than we know, and I also know that I could not have lived the rest of my life without that baby, I could not, would not take no for an answer, I guess I can be stubborn. I needed and wanted that baby in a way I can’t describe. Once you give birth and leave the hospital with nothing in your arms, when you go home to an empty nursery and pile of pink jammies, things change, everything changes. And when that day you go home happens to be the fourth of July and you can hear people celebrating and shooting off fireworks all around you well into the night, well, maybe you just throw down, maybe grief makes you a warrior, makes you relentless.

And then the odyssey of the pregnancy and one diagnosis after another. Hydrocephalus, brain damage, placental problems {this part was true}, for a good bit, my doctors didn’t think he’d reach viability, but I did. I knew him, and I knew he was spunky and he is, in fact, the most stubborn person I’ve ever met which I guess is my fault because he was the product of my sheer stubbornness.

Seven weeks early and didn’t even need a respirator, he could breathe on his own. Tangled intestines meant major surgery at 4lbs and a day old but afterwards he could pull his nose tube out hand over hand. I wouldn't believe that possible had I not seen it with my own eyes, I was so proud of him. Five weeks in the NICU and has barely been sick a day in his life. Brain damaged, oh I think not. The cleverest, most creative character I have ever met, as well as the oldest soul with the truest, kindest heart. Ever.

So I figure if I can will that to happen, then I can will my body into being a place where cancer no longer grows. I can will myself into seeing my kids grow up. I do not accept cancer, I do not accept these odds anymore than I accepted the odds of ever holding a baby in my arms. I’ve been looking for a doctor that will give me different odds, but suddenly I realize the odds are what I make of them and I have decided with all my heart and soul that I will not be the one that relapses, I will not die of cancer, not in the near future anyway. I am cancer-free, I will remain cancer free, that’s just the way it’s going to be. I haven’t allowed myself to look into the future because it breaks my heart, but not anymore, I’m going to dream of graduations and weddings and all those happy things. I’ll live in the moment and look into the future with anticipation and I will that into reality, just like I willed my baby into being. I will think about my future every night the way I used to think about my baby, but outwardly, I’m moving on, I’m getting out of cancertown, I don't want to be a cancer groupie, I'm not going to wear pink and go to pep rallies and walks for awareness. I’ll do what I can do, I’ll exercise, I’ll keep drinking those green smoothies and most importantly, I’ll be happy because I think that’s the healthiest thing anyone can do. I'm taking over, I'm the new boss of me, not these doctors and not these statistics, I tet it, I finally get it.

Friday, February 8, 2013

Dana Farber, Blizzard Edition

I’ve checked another box off my list, I’ve been to the castle on the hill, Dana Farber, for a consult at the conclusion of which, my body finally gave in to the head cold it’d been staving off and now I’m home watching the snow fall surrounded by balled up tissues.

Dana Farber was depressing. It’s efficient, I will say, a procedure for everything and runs like clockwork. I met yet another oncologist, who while personable had nothing to tell me I didn’t know. 70/30, that’s just the way it is. I went and got myself one lousy disease. There are no idicators that can predict who will be the 70 and who will be among the 30, or why the heck anyone gets this in the first place, and like all good western practitioners he believes there isn’t a thing I can do to improve my chances, to stack the cards in my favor.

He told me to live in the moment, enjoy every day... if I’ve always wanted to go to Paris I should go. I should do what I want unless that happens to be buying an old house that will take 20 years to fix up... that wouldn’t be the best choice. Speaking of poor choices, that wasn’t the best analogy. Neither was bringing up writing a will and having my affairs in order. While good advice, I don’t want to hear that from an oncologist.

I still refuse to believe there’s no mind/body connection, no nutritional connection. Not that I would expect either of those to be a cure all, but they’ve got to play a role, have got to improve one’s chances. Many western practitioners don’t believe a wit in acupuncture while a whole other culture embraces it completely. There might not be FDA approved evidence, but there must be a more well-rounded picture.

The last stop on my quest will be in two weeks when I visit a naturopath who is also an MD. I’m hoping he can be my partner in health, help me keep my body strong so it can fight off any relapse at the start. They didn’t even examine me at Dana Farber, just a chat... all those records and slides and films, for what?

So I go back to my life, I feel like I really have been living in the present and I remind myself that 12 years ago I flunked every fertility test and was told I’d have a better chance of winning the lottery than having a baby. I remember so vividly, how I simply would not hear that, would not acknowledge it, would not embrace it and I think I willed my beloved into being, I truly believe that. So I am powerful, and I must will myself into the 70%, but just in case, I won’t waste a minute.

I baked two batches of chocolate chip cookies today instead on one, and I’ve planned a trip to Maine with the tall one to look at colleges in two weeks over february break and I got us the nicest hotel room I could find.

I give in and next week I’m putting him on my auto insurance so he can do part of the driving and show off, and yes, I might take a sedative first.

I’m suddenly fine that my wholesale biz is tanking, I’m going to help the tall one’s football coach raise lots and lots of money to take the whole team to forida. Payback for all he’s done for my boy which is even more than a lot, and because those boys will have the time of their lives and I want to help make it happen, here and now, because I’m here... now. And yeah, I’m going too.

And I’ll enjoy watching the snow fall without giving any thought to shoveling, that’s for another day, I’ll be grateful that I’m holed up in my warm cozy house, and I’m going to stop thinking about numbers and statistics and cancer and just live my life and try to leave nothing and no one unnoticed or unappreciated. Really, what else can I do?

Tuesday, February 5, 2013

Prom Queen

Tomorrow is my big outing to Dana Farber Cancer Center in Boston. Things have fallen pretty far when that’s your big day out. In the past few weeks, I’ve been giddy with excitement, as if I’m preparing for the prom at a fancy hotel, my first fancy hotel. In the past few days, however, aided by being cooped up at home with a sick boy, and maybe fighting off a bug myself, I’ve become a tad petrified.

I’m happy that a new pair of eyeballs, world reknowned eyeballs will be looking at my copious tests, slides, samples and reports. I’m looking forward to comparing and contrasting the facilities and philosophies. My hope is to gain a new level of optimism, that a relapse doesn’t mean certain and somewhat rapid death which is the information I’m currently in possession of. I can deal with some level of early death, but if I relapse, and that’s mostly likely to occur within five years, I need to eek out a few more years, I need to get my kids further on their way, I have to have time to get so many things in order. I want to hear about options and resources and experimental treatments and I’m hoping for some better numbers, or something where the arrow points up instead of down.

Life has been so good these last few months and as I feel better and better and can do more and more a relapse seems unthinkable, but then I realize that this whole situation is unthinkable, but is, none the less, quite real, quite thinkable.

It’s so hard to look ahead, to make plans which is, on the one hand, freeing, but on the other, paralyzing. I have to rebuild my business, earning money is a necessity, but that requires long term planning and it seems crazy to do that, and equally crazy not to.

I hope to come away with something from Dana Farber that helps me move forward but I also know that might be something I have to just figure out how to do on my own.