Monday, July 14, 2014

Tumor Markers Stable

My oncologist says a little knowledge is a dangerous thing, he's right no doubt, but I'm a knowledge girl, I've got to know everything. I can't process something until I understand it, but as I get older I realize not everything can be understood. I was so much more nervous about this Oncology check-in than the others, or maybe I wasn't and I just don't remember. I walked up to the hospital today trying my best to keep my bones from disintegrating. When I checked in I learned that you don't get a plastic bracelet with every visit and I felt mildly victorious. I used to be obsessed with the waste of this, especially the hard plastic clips used to fasten them. There were little dishes of these by each receptionist's desk, I'd imagine how many cases they'd go through in a day or a month, and I'd annoy the receptionist with these thoughts. I'd talk about how many of those must go to the landfill each day when we were all cognizant and knew who we were. If I'm going in for surgery, I'm ok with being labelled all over the place, but for a quick blood draw or doctor's appointment, it seemed wasteful.

In the waiting room I realized there's something I'll never, ever understand and that's Kathie Lee and Hoda. Who is this Hoda person? I don't know the appeal, they don't even seem real, they seem like an amalgam of mainstream thought and style entered into a computer program and then generated in 3d. I can kinda get the Kelly and Michael thing, but not these two, they are icky on a stick.

My appointment was anticlimactic because they forgot to run the most important test, the one that's been keeping me up at night, the infamous tumor marker. I gave another vial and I got a voicemail a few hours later that I went from a 36 to a 40 which is statistically insignificant, so I got my cancer card punched for the next six months. I always think I'll rejoice and celebrate, but instead I'm just exhausted and relieved and maybe I'll sleep better tonight. The reason my doctor says that knowledge can be a dangerous thing is because I know where I am on the bell curve of risk. I know that for the next twelve months I'm climbing to the summit of risk and then I start descending from the peak. And me, well, I'm clumsy, I'll get up there and trip and take an eye out on the pointy part of the peak.

I need more nature. Little dude and I went to a friends in a more rural location the other night and we walked in the dark and were surrounded by fireflies. I haven't seen fireflies in years and J never has. It was magical, the woods seemed all lit up for xmas and my son kept putting his arm around me and waxing poetic. There was a full moon too and warm summer air, it was special, we needed it. It's hard to get that boy away from the computer, there's kind of no way to do it if we're at home, I have to get him off-site which is hard when so many normal summer options are out. He doesn't swim, he has sensory issues and loathes sand between his toes, neither of us like crowds much. He likes to fish, but I don't know the first thing about where and how to go about that. I took him to NH a couple of weeks ago and we did art galleries and caf├ęs which we both love, but once I get the store open, no more weekends off for me for a good long time. Working all the time as it is getting ready and there seems and endless list of things to do. I could manage my time better, I suppose I need not be writing this and I spend an inordinate amount of time sitting on my porch listening to the trees rustle in the wind. Interspersed with that, I get an artist bio written or something ordered for the store and in the back of my mind I'm thinking about margarita's and whether I'll go make one or not.

Friday, July 11, 2014

Anxiety and X-Files

My stomach hurts, really hurts, my head hurts too. A couple of advil will do the trick as far ast he head goes, but my stomach hurts and my who self is sagging. My eyes are droopy and my torso feels like it’s curving inwards because I want to roll up like a pill bug into a little ball and roll away, roll under a shady rock and stay there hidden, out of sight.

Anxiety and stress, anxiety and stress, the gruesome twosome. I’ve made such progress staying settled and present and keeping the howling wolves at bay, but sometimes they approach, they breach the perimeter. I gave my vials of blood on Monday, no big deal, I was cheery going in and cheery going out, but imperceptively, as the week’s gone on, they anxiety has crept up. I’ve got a long weekend between now and my oncologist appointment on Monday. I can’t conceive of hearing anything other than I’m stable, that my cancer markers are in check and everything else looks good. But who out there can possibly conceive of hearing anything other than that and yet so many do. So, so, so many do.

Anxiety is like the black tar that crept into people, overcoming them on the X-Files, that’s a distant memory, oh Mulder and Scully, I loved you so. You don’t see anxiety coming and it starts slowly, but before you know it, you’re consumed and consumed, is what I am at the moment and disturbingly powerless against it. I don’t like powerless.

Anxiety, is robbing me of a precious day. Today is a precious day, every day is, i want to live every minute of it fully, with joy and at peace, but I’m not at peace and that makes me feel like I’m wasting valuable time, because that’s what it’s all about, time, and life, life and time and every minute is valuable. Anxiety affects me in such a physical way, it makes me see differently, process differently, I am sensitive and insecure.

And my stomach hurts.

I’ve been working like mad lately, fixing up my new space, cleaning, painting, making displays, ordering things, planning, so much left to do, signage and packaging and logos and pricing. Then I’m at the studio making and cleaning and purging and packing and then it’s home for cooking and cleaning and planning and plotting and the outcome of all that could be moot, unless I get my dance card punched for another five months of getting to be alive by the doctor man on monday. Living with that duality is surreal, it’s freakish. And at times, and that would be right about now, stressful.

And stressful is wasteful, a whole vicious cycle. Fear and loathing, fear and loathing. Today is one of those days I felt compelled to write, I had to write. I don’t know why I can’t just write it into a journal, I don’t know why that isn’t enough. Is it our innate need to be heard? I’m often embarrassed when I post, but I can’t help it, something in me, that I don’t understand, needs to do it.

I feel like the past few months, I’ve been masquerading as a “normal” person. I can do so much more this summer than last. Last summer I couldn’t walk to my local farmer’s market, this year I can do it. It tires me out a bit, but I can absolutely do it. I can have people over, I rarely nap anymore, there’s just so much more I can do, so I was starting to forget, but I’m not “normal”. I’m travelling around with a guillotine over my neck that can snap at any moment. I know that essentially, we all are, the difference is I’ve met mine, I know it’s name and that makes me a circus sideshow.

The other day, I learned that a lovely, lovely woman in my neighborhood, who I’ve known casually and peripherally for years, and is my age or a few years older was just diagnosed with stage IV colon cancer. I have a friend who came back from that same diagnosis ten years ago and she is a funky, spunky, monkey. So this woman has a long and arduous road, but there is hope... at least I hope there is hope. She has a large, supportive family and tight community, which is all good. She is in my heart and thoughts and maybe I’ll find a way to be helpful, I hope so.

The reason I know is because someone told me, not even knowing that I knew the person, but once you’ve had cancer, everyone tells you about all the people they know with cancer or who have just been diagnosed. You become a repository for everyone’s cancer stories and that makes cancer even more disproportionate to your life, if there can be such a thing after you’ve been through surgeries, chemo, rads and disability.

This week I’m a cancer survivor, next week, maybe not. That’s why those cancer words suck. Survivor, fighter, warrior, battle, succumbed. They try to give order and meaning to a situation that has none.

I had to leave work, couldn’t manage, I’m sitting on my porch, beautiful porch, but instead of seeing, feeling the beauty of my oasis, it’s tinted with my ugly stress and anxiety, so much seems grey instead of bright, 70% opacity. Such a waste of time, I wish I knew how to get a grip, be the mistress of my emotions, of my destiny, even if my destiny is one day long, I want to be the boss of it.

Thursday, July 3, 2014

A Fine Spring

I didn’t make a conscious decision to stop blogging, but once I realized it’d been a while I thought I’d write some sort of profound conclusion, life got busy and I never got to it. Between then and now I’ve been writing posts in my head, without the time to sit down and type them, and I never did settle on a grand summation.

One of the reasons I stopped writing is that I wanted to put it all behind me, I was tired of talking about cancer, it seemed like time to get over it already, but you never really get over it, it rears it’s mutated head when you least expect it and sometimes when you do. There are some things you put behind you and some that just keep following you wherever you go, I guess I need to accept that and I do. My right shoulder has been increasingly painful over the past year and despite regular physical therapy, it’s been only getting worse, so I finally went to an orthopedist who took an x-ray. The film confirmed a “frozen” shoulder, the result of surgery and radiation, which may or may not get better, but it’s good to know that when I jolt it and my eyeballs almost pop out of my head with pain, I’m not injuring it... it just hurts. The film also revealed a small lump near my lymph nodes, so I had to go see my surgeon which entailed a four-day wait in Dante’s inferno and from there another two day wait for an ultrasound which revealed a small benign calcification, nothing to worry about.

During this time, I alternated between relative calm and panic, the other day, while picking luscious red, fragrant strawberries in an endless field on a hot day with a cool breeze I thought if I die right now it would be o.k. I transcended fear for the rest of the day, I was calm. Next morning I woke up in the throes of a panic attack, my enlightened Buddha phase was short-lived, oh well, twas nice while it lasted. I could barely breathe through the ultrasound and then I made the doctor repeat over and over again, it’s nothing, it’s nothing. Now I realize why they don’t give you scans after treatment, because they would find something, we’re all filled with mysterious lumps and bumps, shadows and valleys.

Phew, that’s all I can say. Glad that’s over with, although that’s not over with, that will happen again and again for this reason or that, for the rest of my life. You’re only a “cancer survivor” until you’re not. Until you die of other causes, you don’t know. Next week I go for a blood draw to check for cancer markers and the next week I’ll see my oncologist to find out where I stand, so as much as I feel great and dare I say, look well, I have a shadow I’ll never shake. When I was first diagnosed I was stoic and fearless, I just figured I’d deal with it, but now I know better, for all those pretty ribbons, women die of breast cancer, especially the kind I had, and if I have a recurrence, just one teeny tiny recurrence, it won’t be teeny tiny for long, and as my oncologist so eloquently puts it, my time will be counted in months, not years.

Aside from the scare, I’ve been having a great time, since last I wrote. I watched my oldest boy graduate from high school, when you’ve had cancer, these milestones are even bigger because you’ve listed them in your mind as the things you’d not want to miss. I found the ceremony oddly anticlimactic as the preceding month was so filled with senioritis and graduation related activities and celebrations. During the ceremony I simply felt a quiet door closing, an era ending, and it was neither melancholy or happy, it just was, and that was ok. In the fall, my baby will go to his first choice of colleges, he has a long, wide road ahead of him to take him anyplace he wants. I’m excited for him, I feel joy in the possibilities, but I’m also worried, he will be tested, he will be challenged and I can’t scoop him up anymore and make everything better. But now is the time, it is the right time, for every thing there is a season and this 18-year long season is making way for a new one

I fell in love... and out of love, or more precisely, was fallen out of love with, which made/makes me sad, but it was so damned much fun, while it lasted I have no regrets. For a little while it was lovely, just lovely. I came out of it with a lifelong friend, and that’s not so shabby. I realized that what I really want is to be comfortably settled in a twenty year marriage... a real one, not the empty, lonely, dysfunctional one I had, a real one, the good and the bad as long as it is real and honest and mutual. But that’s not in the cards, that’s not an option, and so I don’t know what I want and I'm well aware, I don't get to choose. I liked feeling things I wasn’t sure I could feel any more, and I'm glad I was open and allowed myself to be vulnerable, but I also know that my life is full and new relationships take time, I don’t have all that much free time. Single mom’s trying to support themselves just don’t have the time and the luxury that single dads with visitation do and let’s face it... I’m a mom-thing. I would love to be a “we”, I think I'm a damned fine person to be a "we" with, but maybe I’m just destined to be a “me”. So I’m just going to let life flow and see where it takes me, my job is to find joy in the minutia, have an open mind and keep challenging myself. I'm not feeling the desperation to be with someone that I was in prior posts. I’m letting go of fantasies and living in the moment, enjoying the strawberry fields and the sweet relief of hearing that “it’s nothing" which makes me realize just how grand my life is.

When I was in treatment, when I was sick, I lost my wholesale business, I couldn’t do shows, and I still can’t. That source of income is gone for me and finally stepping back and looking at the bigger picture, I realized I can’t afford my studio and my Saturday store. Can’t just ride the coat-tails of the Winter Farmer’s Market every week, need to get a job or make one. Not a lot of jobs out there for partially disabled, haven’t been in the workforce for 18 years, 50 year old women. So when a retail space vacated in my beloved neighborhood of 21 years, four blocks from my house, I couldn’t resist. I wanted to go another year cancer-free, get through my highest risk years before making any big life changes, but I didn’t really have a choice. Line of people wanting to rent prime retail space a hop and skip from my house... had to snag it. I’m bereft at having to leave my studio-mate, every minute of sharing our space was a pleasure and nothing but easy peasy. Sharing space is a special kind of relationship of it’s own, and ours has been wonderful, we will always be friends, and room-mates become a unique kind of friend. Change is hard, but it’s unavoidable.

For the last month I’ve been working night and day to clean up a filthy, abused and neglected space. Friends have helped me out more than I can say and I’m equally terrified and excited. I am sad to lose my freedom, I’ll be chained to a box 24/7, so it damned well better be a nice box. I think my concept is good, I think this will work, if not, I haven’t a clue.

But as always, riding alongside my excitement and all this work, is the shadow... how will I come out of my oncologist’s appointment, in a really good mood or the one most dire? The next twelve months are the highest risk for me. On a bell curve I’m hitting the summit and in a year I start descending. There are outliers of course, and a lot of cancer patients die from complications of their treatment, but that doesn’t concern me, there’s only one thing that I worry about and that’s hearing that I have a metastasis, and that will start by hearing that my markers are up. I don’t want to hear that, ever.

In the midst of all these life changes, the heart, the lump, I went to NH with my youngest, my mini-me (but better), and had a perfect weekend with friends except on the way up, I got word that my long estranged father had gone into hospice and on Sunday, on a walk around the lake, I got news that he passed away. At 96, on family number three, having left a wide swath of wreckage behind him, I didn’t feel much of anything other than bad memories. While I was gone, my graduate came home on a night off from "work" with fellow camp counselors to have a party, which I naively thought would be in the backyard with firepit and a reasonable amount of alcohol which I was ok with because I know they don’t drink and drive, they just pile up like rats and sleep wherever they are. Instead, I opened the door and entered a den of filth and destruction. My antique dining room table on it’s back like a dead elephant with a leg broken off, empty bottles and red solo cups behind the couch, descriptions of bathrooms are not fit for civilized readers, sticky filth on every surface and floor which incited an anger I’ve rarely felt. When the party host arrived next evening with a carload of co-conspirators to clean I sat them down and had a wonderful rant and even finished off with yelling at them about not even separating their trash from their recyclables. The phrase “disgusting animals” and “disrespect” were generously tossed about the room and I felt better and my house got cleaned. I was merciless, damn those boys not only don’t know how to clean, they don’t see dirt. I sent my son back into the bathroom to re-clean at least six times and I made them not only mop, but hand dry the floors. A comedy of errors, but at least I'm not mad anymore. I was worried I'd be mad at him for the rest of the summer, but damn, that kid can be charming.

This morning I lit the yearly memorial candle that is delivered the day before by a dear friend who also has people to remember this month. My girl should have been 15 today and the candle will burn for 24-hours. As always, I crack up a week beforehand, today I’m fine. As usual, she goes unremembered and unacknowledged by any of her other relatives, but that’s ok too, she is remembered by her mom and I suppose I’m the only one who knew her even a little bit. I’m in my hammock with an iced tea on this very hot, muggy day hearing both my neighbor practicing her flute and my son whistling the song from Frozen while he plays computer games.

Recent drama aside, I had a wonderful spring. I watched the tall ones last season of high school baseball, I shared the bleachers with other players parents who have become friends and with who I’ve shared bleachers for years, some of them well over a decade. It was a perfect final chapter, I’m excited about my son going to college and us settling into a new normal, I’m excited about my new business venture, deeply moved by the help being offered, feeling more creative than I have in some time and more settled. Feeling like I am at a good point in my life, my soul feels calm and wise and very resilient. I feel like this is my time and with the new store I’m going to step up and own it. I will not let insecurity rule it, I will own it. I will make every decision without running around asking for advice and input, I finally realize that while there is always (much) more to be learned, I have to own my spot on this earth and I’ll stop worrying about what other people think, no more scurrying around like a worried little anxiety mouse. Time to trust my gut and my mind and my instincts and have confidence. I know more than I think I know and it’s time to own it. Integrity, respect, and strength can coexist, I’m putting my cards on the table. This is my time and cancer better not fuck it up.