picking posies

2010-03-18T08:00:00.001-04:00

The one year anniversary of that horrible evening when my doctor told me I had breast cancer has come and gone. When I think back on it, I am astounded at how much can happen in one year. Not just in terms of the day to day events and activities, but also in the evolution of my psychological and emotional life. If you had asked me about my life on the day before my diagnosis a year ago, I would have had quite a tale of woe for you. I felt mired in crises, not just one, but many. I tended to lump them all together under that very useful umbrella term "mid-life crisis." In truth I felt like my life was falling apart. And then it almost did for real.

It became clear to me over the course of this year that all other crises lose their urgency in the face of the ultimate one. I had witnessed this truth as Kristen faced the end of her life, but I didn't really get it until I tiptoed my own little self up to the edge of that abyss and peered over. When your life is threatened, nothing else matters. All other turmoil and trouble shrinks.

I feel like I've been whisked away from that treacherous edge by modern medicine, my friends and family, my own will, and a measure of luck. But I know now how close I live to that edge. And so while I am back to fretting over certain of life's offerings, but I won't let myself be buried under worry and stress again. Because were it not for luck and love and science, I probably wouldn't be here right now. Being here, right now, is all that I want or need. The rest will work out.

As you've probably noticed, I haven't been inspired to write much lately. I began the year thinking that I'd write once a week, sometimes about cancer, sometimes not. But I've found that the subject of cancer is bound to this medium for me, and if I don't feel like writing about the c word, then I don't feel like writing at all. And I feel like writing about it less and less.

So I think I'm going to let this blog go. I'm in the process of opening a studio and shop in Bar Harbor with my friend Michelle, and I think that maybe we'll begin a new blog on our store website. Eventually. First we have to have the website. Well, actually, first we have to have the store. Wish us luck. Once there is a store, and a website, you'll be able to find us at Spruce & Gussy (http://spruceandgussy.com).

Thanks for being out there for me over the course of this last long year. It meant the world to me.

craft hope

2010-01-19T21:35:00.004-05:00

Check out Craft Hope's Etsy store to purchase nifty handmade goods and support the Haitian relief effort at the same time. You can find one of my pendants there soon.

tiny blind stitches

2010-01-11T11:50:00.010-05:00

I've been working very steadily on that baby quilt that I posted a photo of months back. I am really close to finishing it, sewing on the binding by hand. It's only taken me nearly two years...

Of course, I had a lot happening in those two years, so I'm not going to chastise myself about it. As I've been struggling to make tidy little blind stitches all around the edges, I've been thinking about making things, the act of creating and the impetus behind it. One thing that I have discovered for myself since selling the Lompoc is that I really, really love to make things. Facing cancer made me intent on integrating that love into my livelihood. There are few times when I am happier than when I am sewing, knitting, soldering, sometimes even cooking. This, however, can lead to some complicated questions. Does the world really need more stuff, even if it is stuff that I have crafted carefully and with love? (Sarah Neuberger of The Small Object had a really great post about this here, a while back.) Why am I so in my element while I am making things? We're not talking about great art, here. We're talking about a pretty random selection of items, mostly functional to one degree or another, but none of them remarkable in any grand way. Sweaters for babies, needle felted toys, my quirky jewelry, candy; things that bring comfort and some degree of joy, but not art for the ages. If I'm not making something that is going to be Important, is it still worth making? Why am I making it? I began to wonder, while I was struggling to make neat little stitches by hand, if there is perhaps an element of the quest for immortality at play here. My kids and I have been reading the Laura Ingalls Wilder books, and so the subjects converged for me. Thinking enviously of Mary's ability to make perfect little hem stitches even though she was blind (blind! I can't make a decent one with my good eyesight and strong electric lights), and thinking, too, of Claire's repeated questions about when Laura lived, how she died, when she died. When can we visit her house? What is there of her that we can still see?

I don't set out to make a project with the intent that it will outlast me and therefore be a continuation of my life in some way. No, I'm pretty much in it for the instant gratification. (Okay, maybe not instant, though in Amy Karol's book, I am definitely a "Speed Demon" crafter.) But while working on this project, the heirloom nature of giving a handmade quilt to a baby definitely leads me to ponder my mortality, and my drive to craft things by hand. Am I unconsciously trying to ensure that I will leave something of worth when I die, something by which I will be remembered?

I don't think this is the reason that I get so excited picking out yarn for a project, lining up fabrics for a quilt, building a new silver shadowbox for my jewelry. There is a thrill inherent in the act of creation that doesn't have much to do with the fate of the finished product. This worries me, a bit. I feel like I need to be cognizant that the things I create will eventually land somewhere, and so I need to be careful about their number and quality. I don't want to be responsible for filling up any more landfills than I already am. And it is true that I am happiest when I am working on a project that has an intended recipient from the outset. But if I want my creative endeavors to also provide me with an income, then I am going to have to make things that may or may not find their perfect home. What's a crafty girl to do? There is no doubt that humans seem to have a need to decorate themselves and their dens, so I'm choosing to believe that supplying some of those objects is a good and worthy endeavor. The question is, what to make next?

auld aquaintance

2010-01-07T07:43:00.005-05:00

The winner of my first giveaway is Gayle! Thanks so much to all of you for stopping by and joining in. That was fun; I think I'll do them more regularly.

And happy new year to all. As 2010 dawned last week, it occurred to me that I will spend a lot of this year comparing it to last. I suppose I do that every year, to some extent, but there are more notable dates this time around. Just about now last year I went for my first mammogram. And as we wend our way through this year I will be taking note of the first biopsy, second biopsy, the night Dr. Hendricks told Greg and me the diagnosis, my first trip to Boston and Dana Farber, and on and on. I like to believe I can make a clean break and move into life beyond cancer, but the fact is that it is so very recent and the edges are still so raw. I don't spend much time worrying about it coming back or fretting about what I'll do if it does. But every once in a while, especially if I'm doing something with long term implications, I wonder "what if"? What if it comes back?

There is nothing useful about that question, so I'm leaving it behind to focus on here and now. And though the comparisons to last year will be inevitable for me, I can use them as a reminder of how lucky I am, of how much I love being alive and of all the reasons why.

I'm not ready to leave this blog yet, though the urgency has unquestionably abated. I think it will be interesting to see how my experience throughout last year informs my life this year; how it continues to change my life over the long term. I can do that, of course, without the blog, but the act of writing has always been clarifying for me. I expect that there will be less and less talk about cancer and more about the things that I'm able to do now that I'm not in treatment. And about how the experience of having had cancer influences the decisions I make about how to spend my time now.

Thanks for being here with me. Here's to a healthy and joyful 2010!

a gift for you

2009-12-22T08:03:00.007-05:00

As you have probably noticed, I've lost a good deal of momentum with regard to this blog over the past few months. I suspect that it is at least partly because I would love to leave the whole cancer ordeal behind me forever. I've also been ridiculously busy over the last month or so. I'm taking the time now to really enjoy the last few days of this year, reveling in the warmth and joy of the season. That sounds terribly corny, I know, but the solstice and Christmas and the end of the year have always been magical to me, and this year is no exception. When the festivities end, and January opens with its icy breath, I intend to pick up the pieces of experience that are scattered around me, and make something new from them. That will include this blog, and my work, and... well, I expect to find myself making some pretty major decisions in every area of my life.

In the meantime, I want to thank you all for bearing with me, for returning here to check on me even when I'm silent for weeks at a time. And this time of year always makes me want to give things to the people I love, and I'd like to give one of you something. Leave a comment on this post anytime before midnight on January 6, and I'll enter your name in a drawing to win an instock pendant of your choice from my Etsy shop. At the moment, the pickings look a little sparse, but trust me, there are more, and sometime before the end of the year I will list them all.

I hope that the season finds you feeling peaceful and very, very happy.

just a thought

2009-12-04T20:59:00.003-05:00

Today would have been my friend Kristen's 49th birthday. We would have had a tree trimming party, drinking champagne and eating brownies, because she didn't care much for cake. She would have told us how plans were coming along for her 50th celebration in Italy. She loved to plan parties, trips, and menus, and Italy involved all these. She had started planning it in her early 40s.

Instead I am sitting here contemplating how much cancer has taken from me over the past few years: my best friend; my body as I knew it; a measure of naivete or perhaps blissful ignorance. The faint whisper of mortality has grown to a bit of a cacophony since Kristen was diagnosed with ovarian cancer at the end of 2005.

I hope that the robbery is over. I'd add "forever," but I know that is too much to hope for, so I'll put in my request to the benevolent spirits for a good, long hiatus and hope that someone finds a cure in the meantime.

Perhaps you could take a minute today to think about a friend that you've had for a while. A long while. The kind who knew you when you were young and foolish and did dumb things, and who loves you anyway. A friend who knows things about you that you would rather forget, and is kind enough not to mention them too often. A friend who keeps your secrets and tells you hers, a friend who by the simple fact of her existence makes the world a steadier, easier place for you to reside. Maybe you could call or write her (or him) if you can, and tell her how much she means to you. Life is so short and sometimes terrible things happen without warning. I think it's a good idea to counter them with unexpected wonderful things.

november glow

2009-11-18T19:11:00.013-05:00

Okay, okay, enough brooding for now. Let me tell you some of the reasons why I love this time of year.

The sun rides low in the sky, and the light is always soft and golden, even at noon. Everything appears to be lit from within when the sun is out in November in Maine. It's been a lovely month, warmer and drier than usual, so it's easy to appreciate this quality of the sunlight. The leaves have fallen, leaving the trees bare. Granted, this can look a bit dismal against sodden granite skies, but it also means that the red fruits that remain on the trees are in starring roles. Winterberry, apple, mountain ash; the list is long. I love how stark the contrast is, sharp black branches and glowing round fruit.

A frosted apple, which will fall soon and feed the many deer that tramp through our yard. Grudgingly, we allow this. They are so beautiful, those deer. But they sure do make me grumpy come spring when they eat my tulips.

The sugary frost on the berries makes them even prettier. They sparkle and glow.

I've been working on some cards to sell at some of the craft fairs that I will be in this December. I wanted to capture some of the glory of these bursts of color in an otherwise monochromatic landscape. I didn't manage it, but they are kinda nice in their own way. At least I think they are.

I'll be at the Island Arts Association Craft Fair here on MDI on December 4 and 5, at the Atlantic Oceanside here in Bar Harbor. This is a great collection of 50+ artists and crafters from the island communities on and around MDI. On December 6, I'll be at a small show from noon to 5 at the Wine Bar on Wharf Street in Portland, with my friends Michelle Souza and Amy Reisman, among others. The following Sunday, December 13, I'll be at a trunk show at Studio, Jessi Sader's lovely shop in Orono, and the week after that, on Saturday, December 19, I'll be at the Petite Revolution Holiday Shindig at Hogfarms Studio Annex on Main Street in Biddeford. (Coco and Gil Corral of HFSA were recently featured in the new Maine magazine, which I dig). I hope to see you in my travels. I'll post more info about the more distant shows later.

And one last thing. About these new mammogram recommendations. If I had not had my first mammogram at age 40 (and there is no reason that I would have under the new recommendations), the tumors that were present in my breast would not have been detected for months, if not years. My chances of surviving breast cancer would have plummeted. I understand that this is all about numbers and statistics and cost. Individuals get lost in arguments such as these. I'm begging you, don't listen. No one wants to go have a mammogram. It's only slightly more fun than having a tooth pulled. But it could save your life. It almost certainly has mine.

beware, amateur philosophizing herein

2009-11-02T12:36:00.009-05:00

So Halloween has come and gone, we've set our clocks back and the days are growing shorter. Time, once again, for me to examine my life and decide what to do with it. I guess that sounds a bit melodramatic, but making a living and living life in a seasonal town brings a person to extremes. One day you're racing around all stressed out because you're working 70 hours a week and the traffic is making you nuts, and the next day, almost literally, your job has ended and there's not a car on the street when you go out at 7 pm to pick up some milk. It's a crazy way to live. My friend Kristen had this Far Side cartoon on the fridge that depicted two goldfish standing beside their bowl, which was in flames. The caption read something like "Whew, glad we got out of there. Of course now we're equally screwed." It made her think of life in Bar Harbor, in the fire all summer, fish out of water come fall. (Later, when she was being treated for cancer, she pulled it out again because it seemed to her to apply to her chemotherapy treatment, too.) She had a great sense of humor. The cartoon, however, isn't so very far from the truth for some of us.

Over the years I have come to appreciate the natural break in my life, because it is impossible not to think about how I am living and what I might want to change when all of a sudden life as I have come to know it over the summer comes to a grinding halt. I haven't always managed to make the most of this introspective period, but I appreciate that it is there. I'm not sure how it is for you folks that have steadier jobs and a more even routine, because I have chosen to live this way my entire adult life. Does the shortening of the days make you think about your passing life? Does the return of the cold make you wonder if you are doing what you were meant to do? I know this sounds like the babbling of a recovering cancer patient, but honestly, I think about this stuff every year at this time. Perhaps not so earnestly as I am this year, though.

So, you might ask, do I have any answers? Well... no. Not exactly. I can identify a number of things that make me happy. But I have this nagging suspicion that I'm not doing something that I ought to do. Perhaps it's an unrealistic romantic notion, that each of us has a "calling." Most people I've talked to about this lately, all of whom happen to be around my age, think that doing things that make them happy and spending time with people that they love is enough. One friend sent me a lovely quote about finding yourself in the circumstances you are in and making something beautiful of it. I like the image of finding yourself in your circumstances, which to me implies that you can be right in the middle of them and not realize where you are. But what about the remarkable capacity that many of us have, in this time and this place, to change those circumstances? And what does it mean, to make something beautiful? Such different things to different people, and I guess I'm still casting about for my definition of "beautiful" in terms of the way I live my life.

I don't know. It seems that there must be a way to have fun and do the world some good while I'm at it. I've spent my life trying not to do any harm, but that doesn't seem like quite enough any more. What do you think?

On a lighter note, tonight I went out in public without a wig for the first time in almost four months. Okay, so it was under cover of darkness, and only to my knitting group, which is just one step away from being at home. But still. It's progress.

uncharted terrain

2009-10-21T21:51:00.012-04:00

Settling into life after cancer, it is impossible not to think about cancer. A lot. At least that is the way it is for me these days. I have had a few episodes of feeling nauseous and just wrong in my abdominal area, and each one has prompted me to wonder if the cancer has returned. Only recently it dawned on me that these instances might be linked to the Tamoxifen. I had been informed of the most likely potential side effects. I looked up the full list recently, and was stunned by the length and breadth of it. This drug is messing with my hormones, and the results are predictably unpredictable. It's like throwing a tablespoon of oregano into your Szechuan-style stirfry; that relatively minor ingredient is going to make the whole thing different. Simply not quite right.

At least that's what I hope it is. I've been trying to make changes to head off any more cancer cells gone awry. The book I mentioned a while back, Anticancer, has been very important in the way I have come to view the disease and my response to it. Servan-Schreiber writes about making your body inhospitable to cancer cells in terms of caring for your "terrain," an image which jibes nicely with my visualization process, the one with the wooded hillside and bubbling brook. For Servan-Schreiber, maintaining a healthy terrain is achieved through a holistic approach, comprising diet, exercise, meditation and self-reflection, amongst other things. Some of the things he recommends I've been seeing for years. Eat less sugar, less refined flour, more vegetables. But I hadn't ever understood exactly why, and learning about how consuming sugar, refined flour, and grain-fed meat and dairy products makes cancer cells happy has made it much easier for me to avoid them. Not that doing so has been a piece of cake (quite the contrary), or that I've even been all that successful. But I like to believe I'm headed in the right direction.

Speaking of terrain, I spend a fair amount of time in some that is pretty mucky and wet. So here in the Material Girl section of my blog, I must tell you about my new wellies. I hesitated to spend the money on them, but I've had the same pair of wellies for 10 years or so now, and dread having to put them on, because they are so uncomfortable. I ordered these half thinking I'd be sending them right back, but they arrived and I was instantly taken. The purple is deep and subtle, the rubber is soft and squishy, and they are just so pretty. AND practical. What more could a girl ask for? I took them on a test run down to the creek in back of our house to look for cranberries. Here they are in action.

Also in the Material Girl section, here is a photo of a ring that I made for myself using 18 karat gold and a diamond that belonged to my friend Kristen.

It was a solo diamond earring from her jewelry box; in its new life it sits on my finger and reminds me of how much I loved her. And how much she loved me. That makes me happy, and that is one important way to take care of my terrain.

locks of youth

2009-10-05T21:50:00.000-04:00

I went walking with some ghosts last week. It was a sweettart crisp apple of a day, clinging green and vibrant blue. I decided to take a walk in the national park here, on a trail that I have traversed regularly since my first summer here, 21 years ago. This time it was teeming with specters of my younger self. Running with my first dog, skiing with my second. Pushing Jacob in a stroller, carrying Claire in a backpack. Normally remembering these sorts of things makes me happy, but for some reason this day it made me sad.

I know that I am not that old. I know that I am still youthful and energetic. But I cannot help but feel aged, and I find that I am not moving forward as gracefully as I thought I would. In fact, sometimes it feels like I'm being dragged kicking and screaming. What exactly is it that I am clinging to? I am not actually a different person, though sometimes it feels like I am. Am I longing for the youthful limbs or the naivete? Do I want the younger physical being that I no longer have, or a time machine so that I can actually be one of those younger selves again? Why do I find it so hard to grow older? Why now, when I have all too clear a vision of the alternative?

Take my hair. Oops, too late, already gone. Actually, it's finally coming back, and as I expected, it is more gray than not. And I am somewhat ashamed of how hard it is for me to accept it. I have plenty of friends with gray hair, and I think they all look gorgeous. I know very well that my worth as a human being has absolutely nothing to do with the color of my hair. So why do I long to cover it up again? I'm not convinced that doing so will make me look any younger, and even if it did, what do I gain?

I've got a lot more questions than answers lately. When I haven't been mired in them, I have been making some things. Knitting a blanket, tying the baby quilt, and I made a collection of my Posers to send off to MiCA. Here are a couple of them.

I hope that you have been able to find at least one of those perfect apples that you can only get in the fall. I've had quite a few, and feel very lucky indeed.

just keep swimming

2009-09-14T21:22:00.009-04:00

I've been away from posting for too long, but it's because I've been busy not having cancer. The end of August brought the usual transitions: frantic summer crowds to the mellower fall folks, day camp to school. And for me this year it brought the end of the chemotherapy cycles and the biweekly reminder that all is not quite right in my world. It did also bring the beginning of hormone therapy, in the form of a pill that I will take daily for five years, but this is a much kinder, gentler treatment, and now it's just another pill I take with my daily vitamins and supplements. Of course I still have my bald head to remind me of what has transpired over the past few months, but for the most part I am moving forward. With some important changes in my life, but at the moment I'd like to write about something other than cancer.

Lisa, my generous and talented boss, took the Lisa Hall Jewelry crew to XYZ Restaurant in Manset last Saturday. The food is rustic Mexican, the margaritas are tasty and the atmosphere is always lively and sparkly.

We had such fun, as we always do together. I feel so lucky to be able to work with Lisa, Julie and Carrie. I love the work, and I love each of them.

I'm working on getting my jewelry into a shop or two before the holidays. I don't know exactly what I'm doing, but luckily I have a friend from high school who has very graciously agreed to take some of my pieces in her gorgeous shop, MiCA, in Cincinnati. Thanks, Carolyn. In order to introduce myself and my jewelry to retailers I don't know, I've been putting together some photos and information about my work. I'm told that I need a bio, too. You might find this hard to believe, knowing me as you do, but I find it somewhat difficult to write about myself. Oh, sure, I can tell you all about the minutiae of being treated for breast cancer, every gory detail, but this is very different. I don't know if it is the self-promotional aspect, or if it's just hard to know what to focus on and what to drop. For example, does it matter to my work as a metalsmith that I have had breast cancer? Should I mention my formal education, which has little to do with my work now? My kids? What stays and what goes in a brief description of my life? What would you include in your short bio?

I'll let you know how that goes, and I do have more to say about life with(out) cancer. In the meantime, I've been inspired to go write a real letter.

sunny side of the street

2009-09-05T20:42:00.006-04:00

It's been a good couple of weeks. That last post came on the heels of Hurricane Bill and the havoc it wreaked on our island. I can't blame my foul mood completely on the weather, but the pressure was palpable. Surely it didn't help.

Since then I had the last of my biweekly appointments in Boston, and made the last of the major treatment decisions. Doing so brought me a greater feeling of relief than I realized it would, and I feel like I am entering a new chapter. On the plane ride down to Boston, I started reading Anticancer, by David Servan-Schreiber and that, too, has helped me to feel optimistic and more in control than I have since I was diagnosed.

I've read quite a few books about cancer, and many of them have had helpful points. I've used all of them for one thing or another, from recommendations about treatment to ideas about relaxation techniques. But always there was something I didn't agree with or understand. This is the first book about cancer that has resonated with me completely. Or at least so far, 3/4 of the way through it. It has given me is a sense of my own involvement in the cancer and a belief that what I do can change the course of my recovery. So many of these books have insisted that I am not to blame, that it is not my fault that I got cancer. And I have been happy to hear it, and I certainly haven't thought of it as my fault, exactly. But denying that my choices or experiences had anything to do with it also left me feeling helpless. If nothing I had done or felt had caused the cancer, then what was there for me to do but follow the recommendations of the medical establishment and hope for the best? This was not very reassuring to me. Don't get me wrong. I am so very grateful for all of my excellent doctors, and I know that I have been in very good hands. But I wouldn't want all my eggs in that basket.

There is so much that I can write about the book and the changes I will make in my life because of it. Avoiding sugar and antiperspirant has been interesting (as well as stinky, figuratively and literally). But another reason that the past couple of weeks have been so pleasant is because I've had the chance to really enjoy the last of summer with my kids, and we're coming to a crescendo, with Jacob's 10th birthday on Labor Day. So I have cake to make, presents to wrap, and that letter to write.

grumpy with a side of bitter

2009-08-23T20:49:00.000-04:00

So. I'm done with chemotherapy. Chemotherapy isn't quite done with me; my acupuncturist tells me it could be a year before all the effects dissipate. I'm giving it until my hair grows back, then I'm considering that chapter over. The drugs' job accomplished, everything back to normal. Wouldn't that be grand?

Many people feel a kind of despair when their chemotherapy is over, especially those people who don't have another treatment option. There is nothing to do but wait and see and it is easy to see how that can make one feel helpless. I felt differently about chemo all along, never believing, completely, that it would be the cure. Just that it was an important stopgap. So I don't have quite that same feeling. But I do find myself in a strange place. I have more decisions to make about my treatment, and instead of finding that empowering, I'm feeling irritated and fed up with it all. I just want to get on with my life. Without cancer. There's a big part of me that still doesn't feel like this whole cancer ordeal could possibly be real. Despite major surgery, a torso that hardly feels like mine yet, chemotherapy treatments and plenty of writing (and complaining) about it all, I still can't quite believe it. Isn't that true for many of us? Before I got diagnosed with cancer, I thought it couldn't ever happen to me. I was sure I was doing everything right. I would look at cancer patients, even my best friend, and think "yes, but s/he smoked/didn't exercise/ate poorly/fill in the blank and I don't. I won't get cancer." And here I am. And I hate to say it, but you could be here, too. I hope not, fervently and sincerely. For all that my hope is worth.

I haven't been feeling compelled to write lately, and I've been blaming it on the busy summer schedule. But that is only part of it. I don't want to whine or despair here. But sometimes, it is all that I have. I don't want to do any more research about cancer or try to guess what most likely to make it go away for good. I don't want to worry that every little cough means it is my lungs or every little cramp means it's in my abdomen. I don't want to live with this shadow over me for the rest of my life.

The post that I meant to write was a good deal different from this. I haven't been keeping anyone except the people I see every day very well posted on how the past couple of months have gone for me. So I was going to do a post of little bits of information. Perhaps there is still time to salvage it? Or maybe not, and I should just have a good night's sleep and hope for a better attitude tomorrow.

the livin' is easy

2009-08-16T23:18:00.007-04:00

It's August, and I can't get to all the things on my list. I have a post started that is full of bits and pieces I feel like I've been neglecting to mention. But it's only a start, and I don't know when I'll finish it. In the meantime, I had a lovely summery evening with my family tonight. Between the weather and the crazy schedule Greg and I have had, summer family fun has been in short supply. The kids are getting good doses of it at their day camps, but this evening was one of the first for the four of us together.

It was a hot summer day, my favorite kind. We were all busy for most of the day, but as the day wound down we converged at home and packed a suppertime picnic. Then we headed to Sand Beach.

It was gorgeously, gloriously summery. We ate sandwiches and played in the water and relaxed on the blanket. Claire and I were going to make a beach house for fairies to complement the forest fairy house we made last weekend. She, however, got distracted by some minnows, so I made it by myself. I never thought to make fairy houses when I was a kid, but I could easily while away the better part of a day doing it now as an adult.

That's it, tucked in under the dune. A lovely bit of real estate, I think you'll agree.

This is a closeup, showing the table, chairs and fireplace. A walkway and garden were planned, but construction got delayed. After making fairy houses and catching minnows and playing in the surf, we stopped by Mount Desert Island Ice Cream for yummy cones. If it weren't for the wig, I might have forgotten all about the cancer thing on this lovely evening.

visualize this

2009-08-09T05:08:00.002-04:00

I have written here before about being overwhelmed by all the advice about how to vanquish this cancer. I am finding, as I proceed along the treatment path, that some things are beginning to fall away, that they just don't make sense to me, for me, at this point in my life. And other things do make sense, and I'm giving them a try. And it's not just the easy stuff I'm keeping, or the hard stuff that I'm letting go. Okay, I'm not going to become a vegan, or eat all raw food, or give up gluten just yet. Those things would be hard for me. But more importantly, they just aren't resonating with me as part of my solution.

I am still in the process of discovering my solutions, but they are coming to me, as I guess I knew they would. Process is hard for me; I am impatient. I would rather know the answer right away, get to the end result quickly. But it is slowly dawning on me that life will be hard if I can't relax and let it all unfold. Because life is a process, and I don't actually want to know the whole answer, or worse, hurry to the end.

So part of this healing process has been listening and reading and considering all the information and deciding what might work for me. A lower fat diet and a lot more exercise both make sense, though I'm cutting myself some slack on both those fronts until the worst of the chemo crud is behind me. And though I'm still struggling with it, meditating regularly makes sense to me. There have been many studies done on the changes that meditation and visualization can bring about in your brain and in your body. Changes to your heart rate, your immune system, the pain centers in your brain. These studies are comforting to me, I guess, but I'm staying with it because it feels good, despite the deep challenge. The calm that I feel, though fleeting so far, seems to be very valuable indeed. And along with the meditating is a second piece, visualizing.

Just writing the word brings new age visions of gauzy glowing goddesses to my head. Many write or speak about "the white light", sitting quietly and visualizing glowing light entering your body and clearing it of cancer cells. I really wasn't getting that. When I closed my eyes and pictured the process of being cured, I kept getting a vision of PacMan. You know, the good little gobbler cell racing around the maze of my blood and lymph vessels, munching up all the bad little ghosty cells. That is what I pictured, and I knew from what I had read that whatever worked for me was fine. But it wasn't actually working for me, wasn't bringing me much by way of belief or relief. Maybe it was the violence of it. Not that I've ever thought of PacMan as being particularly violent, but all along the idea of cells "attacking," and "doing battle," and of the struggle to be cured as being a "war" has been unsettling to me rather than comforting.

Then I was speaking with a very wise friend about the meditating and visualizing process. I didn't tell her about the PacMan, just that I was trying, but the visualization piece wasn't really working for me. And she shared many thoughts about meditation and visualization, but the word that stuck, the word that resonated, was "purify." That I should focus on imagining the chemotherapy and all my other attempts to cure myself as purifying. I'm not sure I've ever thought of myself and the word "pure" in the same sentence before, but the possibility was intriguing.

The next time I sat to visualize this disease leaving my body, a new image came to my head. It is of a stream that flowed behind my parents house, down to the ocean. I played beside it often growing up. It cascaded down out of the woods, crystal clear, over rocks and pine needles and moss and into the cove. And now I picture crystalline, sparkling water like that, flowing through my body, taking the black, slimy gobs of cancer (or is it rotting leaves?) out to sea. Out of me. And I don't know if it is leaving me pure, but I like to believe it is leaving me cancer free.

angels among us

2009-07-29T20:52:00.013-04:00

When I was diagnosed with breast cancer, I knew right away that I would seek treatment at Dana Farber Cancer Institute in Boston. I didn't stop to think about the logistics. We have generous friends and family in Boston, all willing to help us out in any way that they could. I figured we'd work something out.

But a ten hour round trip by car is not feasible every week, or even two. With the need to maintain some semblance of a normal schedule for a family, and the wear and tear of the treatment, getting to and from Boston as quickly as possible is very important. And that's what the pilots of Angelflights do for us.

Angelflights is a non-profit organization that coordinates free flights for medical patients with pilots who fly their own planes on their own time, at their own expense. The biggest drawback for many patients would be the size of the planes, which tends to be small. Very small. This is not a problem for me. I love flying in general, and particularly in tiny planes. I actually consider it one of the (very few) benefits of having cancer that I have had the opportunity to fly along the coast of Maine a number of times now, just a few thousand feet above land. It is exhilarating, and beautiful, and so much quicker than by car.

This is one of the first planes that we traveled in. I took the photo of it from the back seat of one of the next planes we flew in. This was when they flew us to NYC.

This is the view of the Deer Isle Bridge that we had from that first little red and white plane. Isn't it breathtaking?

Our return to Mount Desert Island after my last treatment. Seeing the island again, whether from the road or from the air, always brings me a feeling of peace.

This photo is of our last pilot, Dan Herrick, just about to land the plane at the Bar Harbor airport. See the runway through the windshield? Isn't that cool? That's my partner, Greg, beside him in the front seat. Another benefit to flying this way is that we get to wear headphones and listen to all the air traffic control radio. I know, I'm a geek.

If not for Angelflights and the pilots who fly for it, getting treatment for cancer would have been much more difficult for me, making an unpleasant experience torturous. I am so very grateful to these very generous people who have made life so much easier for so many of us. Greg and I have flown about a dozen times with about 8 different pilots now, and have been taxied from remote airports to Boston by 2 Earth Angels. Angelflights flies patients with all sorts of medical needs, and of all ages. There are distinct Angelflights organizations all over the country; the one I've been flying with is Angelflights Northeast. Their phone number is 1.800.549.9980. You can find them on the web here.

medical yawnery & White Blood Cells

2009-07-24T21:07:00.007-04:00

I haven’t written much about the chemotherapy experience. I’m sure that, in a way, I have felt that if I ignore it, it will be easier to deal with and will pass more quickly. There are a few too many things that I deal with this way in my life. So in the spirit of making some changes for the better, let me tell you a bit about it.

Along the same lines, I find myself in this small pickle of being keenly aware of how precious each day is, and yet yearning for August 6 to come and go. My last treatment is scheduled for that day, and I will be so glad to have it done. I’d like to assure you that I have been accepting each day as a special treat just for me, but there is no doubt that some days seem more like gifts than others. And not just because of the effects of chemotherapy. I’m guessing I’m not alone in this feeling. Yet another day of rain with cooped up quarreling kids and a headache does not make it easy to enjoy living in the moment. It makes me yearn for a vacation moment, actually.

But we are here to talk chemotherapy. The brief nuts and bolts version is that every other Wednesday Greg and I fly down to Boston via the wonderful pilots of Angelflights (a post on that soon to follow), and stay in deeply discounted hospital affiliated rooms overnight for early morning appointments on Thursday at Dana Farber. We get there and I’m almost always taken very quickly from vitals room to blood draw room to a meeting with my oncologist. The nurses who put in my IV and draw my blood are pros; it is quick and almost completely painless and I’m usually in and out of that room in less than 12 minutes. Since I’ve had past issues with blood draws and IVs, usually involving passing out, this is a very good thing. Then I see my oncologist and we talk about how the treatment went last round. This is my chance to tell her about my minor aches and pains, because really, this is all that I have had so far. Most of my side effects have been so minor that I asked her if that meant the chemotherapy was being less effective. I mean, even my hair, after an initial exodus, seems to be hanging around. Well, sitting around, short and stubbly. Not much hanging going on there. She assured me that it doesn’t have to be a wretched experience in order for it to work.

Don’t get me wrong, I’ve got my share of complaining to do, and Greg and my beloved workmates get more than their share of listening. On one of the first nausea meds (they have me on multiple), I experienced migraine auras. They replaced that one for round two. Most of the nausea meds are given right at the beginning of treatment. Then I take a couple more Friday and Saturday, and I haven’t needed to supplement them after that. I have yet to feel anything that I would describe as nausea.

After seeing my oncologist, we go up a floor and wait for the "infusion." Doesn't that make it sound nice? Like I'm in a good smelling spa or a bar with yummy vodka. They lead me to a big lounge chair and start me on a pile on nausea meds. After the nausea meds come the big drugs. Three injections of Adriamycin into my IV. It is bright red and is the one that can cause possible heart damage down the line in less than 1 percent of patients. That low number doesn’t stop my heart from skipping beats when I think of it every now and then. The second drug is cytoxan, and it is given through a drip into my IV that takes about an hour. That one can cause bladder irritation, but luckily my brain doesn’t seem to register the possibility in order to add its influence. The only discomfort I have ever felt during the actual treatment is at my IV site on my hand, and has been either the chill of the saline or an occasional icy burning when she injects the Adriamycin. If I put a heat pack on early it helps.

On Friday, at home and at least 24 hours after my treatment, Greg gives me a shot of Neulasta. A shot that costs $4100, by the way. Even my insurance company, notorious for agreeing to pay only, say, $9K for $38K surgeries, is paying $4100 per shot. There isn’t anyone left in this country who thinks the healthcare system is just fine the way it is, is there? So he gives me this shot, which is formulated to boost my white blood cell production so that my body will be ready for the next chemotherapy treatment. Normally treatments are given every 3 weeks apart, but because I had been considering continuing with Taxol (which I think I won’t now) and also because there may be some benefit to having the AC 2 weeks apart instead of 3, here I am. I’ve decided against the Taxol for a number of reasons. Though there have been preliminary studies showing increased effectiveness in reducing recurrence, that increase has been primarily in hormone receptor neutral cancers, which mine is not. And one of Taxol’s potential side effects is numbing of the fingers and toes. It is not common and is usually temporary, but if I were to lose feeling in my fingers, I would be miserable. Most of the activities that bring me the most joy demand manual dexterity, and it doesn’t seem worth the risk at this point.

I spend Friday and Saturday feeling mostly fine; one of the drugs I take both those days is a steroid, so I don’t notice much by way of fatigue. Of course I’ve been taking it pretty easy those days, too, so certainly that helps. By Sunday evening I’m starting to feel a bit drained and Monday and Tuesday are a little long, just feeling vaguely headachy and pretty tired. But then I’m fine again until about a week after the treatment, which is when my blood counts must drop. But the Neulasta has been doing its thing, too, so I’m a little tired from low blood counts and a little sore in my joints from the action of the Neulasta. I limp around and complain a bit the second weekend. By Monday I’m feeling pretty swell again. Ready for another round on Thursday. And the next round will be my last. Let’s hope it’s for good.

On a lighter note, I’ve found one of those albums that I just know will mark this time for me for the rest of my life. And I don’t mean in a bad way. I have so many of those, full albums or just songs, that can transport me back to a night in Jen’s dorm room in 1988, or to waiting tables at the Lompoc in 1994, or to the evening my daughter was born in 2003. It’s really remarkable to me, and can be just as vivid a time trip as odors can take me on. I just got my hands on The White Stripes White Blood Cells. How apropos, right? I chose it before realizing the connection. I’m thinking that the kickass music and lyrics are helping to boost my own white blood cell count. I love it because it can be loud and a little harsh, which is one way that I might describe the chemotherapy treatments, but moves right into some of the sweetest moments. Also a byproduct of the chemotherapy experience for me. “Every breath that is in your lungs is a tiny little gift to me.” That line makes me swoon. And “It might sound silly, for me to think childish things like these, but I’m so sick of acting tough and I’m gonna do what I please.” Yeah, baby.

"...i'll smile instead."

2009-07-13T21:57:00.009-04:00

About two weeks after my first chemotherapy treatment, my hair started to come out in handfuls. This was no surprise, of course, but it was somewhat alarming all the same. I knew I didn't want to have it continue this way until I was left with wispy strips here and there on my head, so we had a family date to shave it off. Perhaps not so enjoyable as, say, a family picnic or game of wiffle ball, but I suspected that it would be much easier on the kids if they were part of the process. Having me leave with hair and come home bald would have been pretty disturbing to them. So last Saturday we made pizza and put in a movie and gave me a haircut. Greg did the cutting, Jacob took pictures, and Claire offered moral support. "If I feel like laughing, Mama, I'll smile instead."

Greg wasn't able to get all of it off with the clippers that we had, and I wasn't up for a razor, so I have about an 1/8th of an inch of salt & pepper stubble. I expect this, too, will fall out before long. Jacob seems to wish I would keep my head covered, Claire laughs at me a bit and likes to rub her hand on my head. Overall the experience hasn't been quite as traumatic as I thought it would be. But I'm not quite sure what to do with my naked head.

I'm more comfortable just leaving it uncovered than I thought I would be, at least around the house, but it's a little chilly. The pre-tied scarves I have give me a headache. I'm going to have a go at tying a scarf myself, but I suspect it's going to end up in a silken knot around my neck. I have a wig that I wear when I leave the house, but it's not really comfortable enough to lounge around in. And I do like to lounge. As luck would have it, I've been making a lot of baby hats lately. Here are two of them.

Soft cotton and pretty cute, I think. The pattern for the cabled one is here, the flowered one is in a book you can find here. My head is an awful lot like a baby's right now, so I'm going to make myself one of these hats. I think the one with the flower. I'm not quite ready to post photos of my bald self quite yet. But maybe I'll take one of my hat when it's done.

happy birthday to me

2009-07-10T15:48:00.011-04:00

It's my 41st birthday. Over the past few couple of years, these anniversaries have become occasion for reflection, albeit somewhat somber. My 39th birthday was just a month after Kristen died, and I felt I was balancing on the edge of a chasm most of the time. Muddling along at the Lompoc, at home, in life. My 40th wasn't as hard, but I had just sold the Lompoc, and although that was a good thing, my life was definitely in upheaval. Not an easy place to enjoy what was a difficult milestone birthday simply by virtue of the number. The reality of being in the middle of life hit me hard, and it wasn't entirely pleasant.

I've always been a big fan of my birthday, a great excuse for a party for a true party girl at heart. So after my mellow 40th, I thought I'd get a little wild and crazy for my 41st. Little did I know what was around the next corner.

So my reflections today have led me down some rough paths. The past couple of years have been full of primers. I am 41 and have lost someone that I thought I'd have beside me for another 40 years. That is a loss from which I will never fully recover. I've left one career and while I did stumble into another one that I love, I wonder if it is right for me for the long term. And I have had cancer. I will be in treatment for cancer until I'm 46. If I'm in the majority and make it to 46.

After dinner tonight, Claire climbed into my lap and I held her and tried with all my power to wrap her in my love, tangibly, physically. I want to watch her and Jacob grow up, be there with them while they do it. And I might not. Now I realize that any one of us might not be here tomorrow, or in a year, or in five. But my "might" is a little mightier than most lately, and sometimes it brings me to tears.

Other reflections today have been less sorrowful. Lying in bed with Claire while she fell asleep, I was thinking about trying to pay attention to each moment. It's hard, and I think it has gotten harder as I've gotten older. Looking out Claire's window at the leaves moving in the breeze, I remembered lying in my own little bed in Five Islands, appreciating the rustle of the oak leaves in the summer just outside my window. Getting out of bed then and going downstairs and out the kitchen door, to sit on the steps and breathe deeply the summer air, stare at the calm, sparkling water of Gott's Cove. I can't see the ocean from my house now, but I can sit and gaze down the long field of gardens, apple trees, and lilacs at a mountain's peak. Life is very, very good.

One resolution I made today is to do something I have been thinking about since Jacob was born, almost 10 years ago. I thought then that it would be a gift to him to write him a letter on his birthday each year. To tell him about the past year, about his character and personality and antics. To tell him once again how much I love him and the ways I love him and that I will love him forever. Almost 10 years have passed, and I haven't written a single letter to either of my kids. But sitting there with Claire tonight, it was clear to me that there was no better way to insure that I could pass along my love made tangible, no matter what happens. And it will be a gift not just to them, but also to myself.

faith

2009-07-02T07:35:00.005-04:00

(I took this cue from a good friend who has an excellent blog at http://unfurlingferns.wordpress.com. I'm sure I'll have more words soon.)

vucksah5rm

california sunshine on a gray maine day

2009-06-28T05:54:00.007-04:00

We've been getting precious little sunshine here in coastal Maine over the past few weeks. It starts to bring a girl down, gray clouds, gray fog. Luckily for me, I have a team of guardian angels who live in the heart of California, and seem to know just the perfect time to send gifts of See's Candies and Meyer lemons from their very own trees. The box of candy disappeared pretty quickly, but the lemons will be shining in my pantry for a while yet.

I zested them, and soaked the peel in a liter of good Swedish vodka. Then I juiced them, and made some extremely tasty lemonade. The lemonade is gone, but after letting the peel flavor the vodka for another week or so, I'll drain it out, mix in a little simple syrup and have limoncello that should prove to be another dose of sunshine when we need it most, tucked away safely on the pantry shelf. And the best part of all is that this sunshine in a bottle reminds me of the dearest friend that I have ever had, and these memories help me deal with all the trials and tribulations of late.

And we had an afternoon of sunshine in which to highlight it's gorgeous golden gleam.

anyone got a spoonful of sugar?

2009-06-25T03:58:00.008-04:00

My oncologist told me to take an anti-anxiety pill before bed last night, but I didn't because they can make me feel so groggy in the morning. But I woke up at 2:45 feeling... anxious. Guess I should have taken the pill.

Greg and I board a plane to Boston in an hour and a half, and I will have my first chemotherapy treatment. I am pretty sure that this is the right thing for me to do, but I'm finding that it is not nearly so neat a decision as the one about surgery. That one was hard, but once I made it, I didn't look back. This chemo thing is a much tougher pill to swallow. (Good thing they're going to give it to me in an IV. Ha ha.) With the surgery, there was no doubt that it had to be done, in anyone's mind. It was just a question of how exactly to go about it. But with the chemotherapy, I'm still not convinced it has to be done. I just think it is best if I do.

There are so many opinions about what might cure this cancer. But nobody knows for sure, and so I am left to hear all the options and choose the ones that seem best for me. That makes it sound a lot easier than it is. I have encountered so many recommendations, many of them contradictory. Advice about everything from what to eat and how to cook it to what supplements to take--or not take. Ingest 1/3 cup flax seed oil every day, cut daily fat to 20%. Take high doses of antioxidants, no, definitely don't. Cook all your vegetables, vegan and raw is the only way to go. Don't drink icy drinks, have a smoothie with berries and wheatgrass every day. Take chemotherapy, it might be the only thing that will kill any remaining cancer cells. Don't take chemotherapy, it damages too many of your healthy cells.

I don't want to make these decisions from a fearful place, but the fact is that having cancer is absolutely terrifying. No one is being melodramatic when they call it life threatening. My prognosis is pretty good, but I'm not looking at a 100% cure rate here. 9 out of 10 alive in five years doesn't sound too bad, but I bet that's not what the 10th person would say. I'm trying really hard not to be that 10th person. If I knew what would make this go away forever, I'd do it. Whatever it was, I'd do it. But I don't know, no one does. So I'm working with some best guesses here. Wish me luck.

beauty and the beast

2009-06-14T21:30:00.009-04:00

I've decided to have some chemotherapy treatments. It has taken me a while to reach this decision, because there have been many factors to consider. I've decided that I will be more worried and scared if I don't take the drastic drugs than if I do. There are some pretty frightening potential side effects, but they pale in comparison to what the cancer will do to me if it returns. And chemotherapy, combined with hormone therapy, gives me the best chance of removing it from my body for good. So now I'm readying myself for the one certain side effect: losing my hair.

There are much worse things in life than being 40, female, and bald. Being deathly ill comes to mind. But I'm not going to lie. I'm vain. And I'm going to miss my hair.

Certainly of the side effects that chemotherapy may carry with it, hair loss is one of the least troublesome because it is temporary. And I've been thinking of the benefits. I'll get to see what my scalp looks like, a mysterious region that many of us never uncover. I've always wondered how I'd look with really, really short hair, but I've been too chicken to try. I've gotten really tired of dyeing my hair, and this will be a good chance to see how it looks without an awkward transition. Well, if you don't count the bald period, anyway. Really, though, no strange color combos. Hell, I'd almost talked myself into looking forward to this particular detour.

Then the other day I was looking for a good magazine, and by good I mean one that wouldn't require too much brain cell activity. Maybe People or one of those decorating magazines... and then I spotted it. A magazine about hair. The whole magazine. Just hair. "No more bad hair days" exclaimed the cover. How original.

At first, seeing the magazine made me feel bad about my impending hairlessness. But as I considered it further, I realized that the existence of a magazine devoted to pictures of hair, articles about hair, and undoubtedly countless ads about hair made me feel a little less shallow. If a 150 page magazine about hair and only hair has a place in our society, then I am certainly not alone in feeling pretty fond of my tresses.

When I started contemplating what it would be like to live with a bald pate, I thought about doing something silly, crazy, fun. Something that a teenager might do, like tattoo her scalp or sport pink hair. I exhibited my share of rebellious behavior as a teen, but it never involved my hair. But once I was seated in a chair to talk wigs with a professional, all those ideas melted away. Really I just want to look normal. I just want to look healthy. I don't want to look like a teenager, and I don't want to look like a cancer patient. So I ordered a wig that looks a lot like my own hair. Actually, I think that I might like it better than my real hair. So thick and lustrous and brown. I know that wigs can be uncomfortable to wear, and I know that I might not end up wearing it that often. I know this from friends' experiences. But I'm guessing that I will wear it, a lot. And that I won't have many bad hair days for a few months at least.

the rock and the hard place

2009-06-01T11:05:00.004-04:00

Last week was almost a normal week for me. Well, still only half days at work, and then there was that HUGE party/benefit that my friends hosted for me. I knew, before the event, how fabulous my community is, how many friends I have here, how much I am loved and how much I love. But this was a physical manifestation of all this that I have known, in one place, at one time, and it was humbling, and inspiring, and empowering. I can't thank you all enough. I simply cannot find the words.

The timing of the event ended up being perfect, because I was feeling healed enough to be there for hours and to get plenty of hugs and do plenty of talking. And because the sun came out for the first time in a week to shine on us. And because I am faced with another difficult decision, and seeing so many of my friends and family in one place, gathered for me, has given me a little more courage and has made me feel a little more rooted.

I saw an oncologist at Dana Farber to discuss the next step in treatment. I like to believe that the cancer is gone, never to return, but the reality is that it made its way to one lymph node, and that is enough to set us to wondering if it made it farther. There may be some microscopic cells still lurking, waiting for their chance to grow and make my life hell by damaging something more important than my breast. There is no way for us to know if there are stray cells or not, so more treatment is essential. It is the kind of treatment that is still a bit of a question, at least in my mind.

This doctor is recommending 4 courses of Adriamycin/cytoxan (AC) chemotherapy followed by 5 years of an estrogen blocking drug called Tamoxifen. I have known since I was diagnosed that I would probably be taking the Tamoxifen. The side effects are relatively minor and the gains are likely to be high. As my oncologist put it for me, if no more treatment is given, 20-25 women will have a recurrence out of 100 women like me. With Tamoxifen, 10-12 women would have a recurrence. With chemo and Tamoxifen, 8-10 women would see it return. It has been very important for me to think of it this way, rather than that these percentages apply directly to me. It's a somewhat difficult distinction for me to make, to be honest. But it is an important one.

She is recommending the chemo because I am young and she believes that the possible side effects of the chemo are worth the potential gain. For some women the Tamoxifen will work, for some the chemo will work, for some it takes both. And we don't know which woman I am. But I am having a really hard time deciding if the possibility that I am one of those 2 to 4 women is big enough to make it worth it for me. While I don't relish the thought of losing my hair or being nauseous for a couple of days every three weeks all summer, it is not the short term side effects that make me hesitate. I can't help but wonder what I will be doing to my body over time by allowing these toxic substances in. Of course, the cancer is potentially far more toxic than the chemo drugs. But will it be for me? Can I get the same benefit by changing my diet or lifestyle?

I will go to Sloan-Kettering in New York this week for a second opinion, and also see a Chinese healer in Portland to hear her recommendation. And luckily I seem to be past the reluctance I was feeling to read any more about cancer. I have multiple books and am studying them all.

I feel like this is all so dull and boring, and I hope you'll forgive me if you have found that to be so. As with the rest of this cancer experience, I'm pretty sick of thinking about it myself. Unfortunately, I have no choice. But you do, so I am grateful for your attention. And any thoughts that you might have. It is still my intention to move this blog beyond All Cancer All the Time, but it's slower going that I thought it would be. I'll be working on appreciating it as another lesson in patience.

here and now

2009-05-22T17:45:00.011-04:00

I went to work for a few hours today. Being back in Lisa's studio was wonderful, even though my beloved workmates were all elsewhere. In fact, it was hard to leave after half a day. I am realizing that if Having Kids was Lesson #1 in Learning to Let Go 101, then Having Cancer is my Lesson #2.

I've always been a bit of a control freak. I've been independent and self-reliant since I left the house at age 4 to walk to the store, purse slung over my arm. (My grandfather retrieved me, about 1/3 of a mile from home). Those qualities served me pretty well in high school, and quite well through college and my 20s. Boy, those 30s threw me for a loop. I developed not one, but two very important relationships in which I was a partner, and bore my children. To say that it has been tough for me to loosen my grip and let other people have a bigger say in my life would be a laughable understatement. In fact, thinking about it now, I'm not sure I'm very good at it still. Perhaps that brought me to the second lesson?

I don't know, but I can tell you that wrestling with the frustration I'm feeling at not being able to just live my normal life is one of the hardest parts of this ordeal so far. I think that I've been pretty patient, paying attention to what my body is telling me about how much I can do, and when I should take a nap. It doesn't stop my mind from whirling, though. I want to be in the shop, helping to prepare for the season. My own designs have been pretty well received on a small scale, and I want to move them to a larger scale. I want to be going to Jacob's baseball games and taking Claire to school every day. Feeling that my life is on pause, or at least in slow motion, is very hard for me. And so much of the time and energy I do have is being spent talking on the phone, going to appointments, making decisions about my health. I realize that it is what I must do, that there is nothing more important at the moment. These tasks are an integral part of increasing my chances of living to see my children grow up. So there is no question that these duties need to be at the top of my priority list. Unfortunately, that doesn't mean that I enjoy doing them, and it doesn't mean that I can reason my frustration away.

Perhaps there is a lesson in my meditation practice for this. "My meditation practice" makes it sound a lot more established than it actually is. But I have gathered enough so far, with my little baby steps, to know that perhaps I would be more at ease if I were engrossed in each moment, in each task that I am focused on. Even when–especially when?–I would rather be doing something other than the task at hand. After all, I am alive, and can do these things that may save my life. When I look at the lives of my peers, it seems hardly fair that I have to spend so much time focused simply on surviving. But when I think about the lives of people all over the world, there is no question that I am still a very lucky person. Simply by virtue of my birth time and place, I have been handed more than my share of "fair".

I know, too, that I should be taking this time to appreciate the tiny joys and to breathe deeply, as a wise friend recently told me. I try. Really I do. Okay, maybe I could try harder. Maybe that will be my goal for this next week. It shouldn't be that hard, with the lilacs and apple blossoms in bloom.

jiggity jig, jiggity jog

2009-05-15T09:26:00.008-04:00

I'm home. Blissfully, gratefully home. My hospital situation couldn't have been better if I'd requested it, a private room with kind, knowledgeable nurses, and friends nearly always with me. Greg's mom house, where we stayed for three nights after I left the hospital, is also very comfortable, and like a second home to me. But driving over the bridge onto the island Monday night, I had the same feeling of relief and joy that I have always gotten when I come back to MDI. A good deal of the solace is in the place itself. It is magical to me, just as it was 21 years ago when I moved here. Over the years I have built this amazing network of friends to add to the charmed comfort of this place. That network is like a blanket for me to nestle in. I am so very blessed. Perhaps my deepest wish for humanity is that every person have a place where they feel so treasured.

So I'm home, with three tubes hanging out of me and a tight elastic abdominal binder than Greg and I call my girdle. Though last night we decided that maybe I looked more like some mutant wrestler with the belt, the tubes and bulbs attached to them, and my bare legs in slipper boots. Very sexy. I can't have caffeine or chocolate, and I'm sure alcohol is on that list, too, though they haven't mentioned it specifically. I haven't wanted that, but I have been longing for the other forbidden substances. Mostly the chocolate.

The restrictions have less to do with the cancer, and more to do with the blood supply to the tissue transplants, but of course, it starts me to wondering, again, about what I should and should not do now that I've tangled with cancer. I think most of us think about that from time to time, whether cancer has touched our lives directly or not. On the flip side of wondering about how I should change my lifestyle now is the question that has been nagging me since Dr. Hendricks told me I had cancer: why me? I'm a pretty healthy person generally speaking. What did I do or ingest or feel that made some of my cells mutiny? Did I eat too many hot dogs when I was young? Drink too much in my 20s? Was it the stress that felt like it was crushing me at times over the past couple of years? Wearing deodorant, drinking water from plastic bottles, breathing the air, digging in the dirt; it seems like almost everything I've done has become suspect.

There's no way to know, and perhaps it shouldn't bother me too much, but I feel like if I knew, I could make lifestyle changes to make sure it never comes back again. Unlike heart disease or diabetes, I just don't know what those lifestyle changes are. Of course, there are the obvious ones. Eat lots of veggies and fruit, get plenty of exercise, don't smoke, don't drink too much. But I feel like I was already doing all those things, and still the cancer took root. So what now? Eat a macrobiotic diet, become a vegan, meditate, drink wheatgrass shots, take this or that supplement, give up caffeine and alcohol and sugar. Yikes. Would doing any of those things matter? All have their proponents, with testimonials to the changes in their prognosis, overall health, life. But does that mean it's right for me? What would my life be like if I made these changes?

One of the first books I turned to after diagnosis is a book called Cancer: 50 Essential Things to Do by Greg Anderson. It's been a great book for me, and I highly recommend it. One of his tenets is that you must believe fully in your treatment in order for it to work as well as possible. If you view every step as a chore forced upon you by your doctor, it won't work nearly so effectively as if you embrace the process and truly believe that it will make you better. Of course, this requires some research and some serious thoughts into your deepest beliefs. I'm beginning to wonder if I will just have to apply the same principle to other choices I will make about what I will and won't do to prevent this disease from coming back. There will be more medical treatment for me, though I don't know just what yet. But I have the feeling that there will be more lasting changes to my life now, too. I haven't quite figured out what those changes will be, though I'm pretty sure chocolate will pass my lips again. I guess I'll let you know when I decide what else makes the cut.

Oh, and by the way, the housecoats are working out perfectly.

channeling Grammy Moore

2009-05-03T05:56:00.001-04:00

I turned 40 last year. As for many people who turn 40, the event gave me pause. It hadn't occurred to me that I was approaching mid-life, let alone just a step or two away from entering it, but here I was. Losing my best friend to ovarian cancer at her absurdly young age just a year before had certainly started me thinking about life in a different way. Of course I had known that I was going to die someday; we all know that, with our heads. But what does it take to make us really know it, to feel it and believe it and to have that fact change the way that we live our lives?

You would think that losing someone I loved so dearly, someone I had expected to have beside me for life, would be a wake up call about the whole mortality thing. But the human mind is a mysterious and stubborn thing. Though I had slowed down long enough to look death over, before long I was once again blithely skipping along my life path, still believing that somehow it would be different for me. My 40th birthday introduced an annoying little voice in the back of my mind, one that whispered things like "midway through life" and "not young anymore." But still I had yet to take heed, to really believe it. I was like a willful child, insisting that I was still young. Too young to think about dying.

And then I got cancer. There's nothing like having a doctor look at you and say "You have cancer" to wrap a shoelace in your chain and send you head over bottom off your smooth ride. Because, in our society, cancer = death. The equation might not be complete, but there is no doubt that death is a thought that crosses almost all our minds when we hear the C word. As a Chinese healer said to me, heart disease is just as deadly, but there is a stigma about cancer that just won't go away. You feel as though you have been handed a death sentence.

Well, actually, I didn't. I knew I had a very good prognosis, that we caught it early and that in all likelihood I would be fine. Different, for sure, but fine. But having cancer has cast a shadow over the rest of my life, both the shadow of mortality and the subsequent looming reality that I am getting older. No ignoring it now. One of the first things I thought when he told me I had cancer was "I'm too YOUNG to have cancer." Which in one way is true; we're all too young to have to go through the kind of fear and uncertainty that cancer delivers. But, of course, there is no such thing as too young to have cancer. And me... well, I'm really not that young.

Right after I was diagnosed, I bought some books to read that I hoped would help me cope. One of them is Crazy Sexy Cancer Tips, by Kris Carr, which has been an excellent resource for me. She includes many of her friends in the book, one of whom started a web community for young people with cancer. How does she define young? Ages 15 to 40. So. There it is again. The cusp. And I am on the edge of it, teetering between being young and... old? I'm a young person with cancer now , but when I turn 41 in 2 months... what then?

I know that it doesn't really matter. That regardless of my age, I will be this person that I am, dealing with these obstacles that I'm facing. I will be the person I have always been while I cope, and maybe even emerge a little stronger and wiser. But can you blame me for getting excited when Dana Farber sent me a pamphlet about their special programs for young women with breast cancer? It was mildly thrilling to know that I fit their criteria for young. And yet, what if I hadn't? In a society that puts so much value on youth, it is hard to accept getting older. With a little luck and some serious introspection, all this experience should make me a better person, right?

As always, I begin writing hoping that I can make some sense out of this jumble of thoughts that I've been having lately, and, as usual, I fear I have failed again. However, I'd like to leave you with an image. I went shopping with some friends, and we found some housecoats for me to wear after surgery. Pants won't be a fun option because of the incision on my stomach, and pulling things over my head won't be possible right away because of how the mastectomies will affect my arms, so housecoats are the best option. A housecoat was standard garb for my great-grandmother Lovica, a fundamental supply, like a cup of black instant coffee, a cigarette and her rocking chair. I loved my grandmother dearly. Now I'm starting to look like her. And in preparation for my surgery, I'm going to embrace my inner old lady, the one I intend to be some day. Right after I dye my hair.

death and taxes

2009-05-01T18:59:00.002-04:00

So I signed a will today. Soon after Kristen's cancer took a turn for the worse, back in 2006, she and I went to a lawyer together to write our wills. She went first, the lawyer asking questions, her answering. During my turn, when I answered with her name for more than one of the questions, she looked at me like I was crazy, as if to say "but I'm the one who is going to die." We knew that she would probably "predecease" me, as the lawyers love to say, but as we all know, nothing is certain. And if, by some chance, she were to survive me, I wanted to be sure that she was first in line for the things that I owed her.

The kind lawyer had Kristen's will done in a jiffy, but mine got buried. He sent it to me to look over shortly before she died, a year later. I tucked it away, unable to deal with it at that moment, and by the time I pulled it out again, it needed to be rewritten. But despite that flash of insight that I had had in his office with her about the uncertainty of life, I once again put it back in the pile, as if to say "I'm not going to die. I don't need this."

I am going to die. Hopefully not right away, hopefully not in surgery or from anything related to cancer at all. But I am going to die, and I don't know when or how. If I care about my children and what happens to them when I die, which I do, very much, then I need to have a will. It has taken getting cancer myself to make me act upon this.

And what made me sign up for that mammogram, despite feeling almost certain that I would never get breast cancer? I don't know, but right now, I'm urging you women out there who are over 40 and haven't had a mammogram to get one. As a friend said recently, I'm the poster child for Mammograms at 40. And write a will while you're at it. Having a will is a way to show love and respect both for yourself and for those you love. These things aren't fun, and they can be hard to face, but they are important.

I'll try not to twist my ankle as I step back off my soapbox...

whiskers on kittens

2009-04-24T10:27:00.000-04:00

So my techno-reluctant partner finally read my blog, and remarked that I seem very detached. It makes sense that he would think so, since we live together and he has witnessed most of the peaks and nadirs of my emotional reaction to this whole cancer issue. I think that writing allows me to get a bit more scientific about it all, dissect the experience much like that fetal pig in Bio 101 (8 feet of intestines!). But sometimes not. Like that last one. I sat down to write and didn't even know what was coming until it was on the page. Every pathetic bit of it.

Anyway, today I've had enough of cancer, and I'm going to tell you about just a couple of things that have made me very happy lately.

These flowers were given to me at an awesome party that my friends had for me. They fed me treats (tiramisu!) and made me laugh and gave me presents. The next morning, the flowers and our Easter eggs were lit up in the morning sun on the kitchen counter. A bunch of fresh flowers in my kitchen never fails to make me cheerful. The daffodils in our yard are about to open, and a couple dozen tulips that I planted last fall are coming up. Greg built a cage to protect them from the deer, so I'll actually get to see them bloom this year.

I finally got some jewelry finished, and I'll be able to get my etsy shop looking swell before I head off to surgery. I also had some business postcards made, and I really love the way that they came out, so I'm starting to feel like I have an actual fledgling business. This is one of the rings that I made.

This is a quilt that I started last spring. The blocks are stitched and pressed, and now I just have to sew them together. Then the batting, backing and binding. I don't know if I'll be able to finish it before surgery, but even if not, seeing it all laid out like this makes me happy.

Claire and I went for a bike ride/walk on the carriage roads last week. We had an orange and some chocolate beside Hadlock Pond.

I gave the kids my old camera. I was looking through my photo library the other day, and came across a series of shots like these that I didn't know were there. They made me laugh. Silly, crazy kids.

Tomorrow I'll probably be back to morosely mulling over mid-life. In the meantime, we're off to enjoy the spring sunshine. I hope you are able to as well.

use your words like a big girl

2009-04-21T20:55:00.007-04:00

I felt like a 2 year-old child today. A 2 year-old in the middle of a tantrum. I had two appointments scheduled, one for a CTA scan and the other a pre-operation screening of sorts. The breakdown came early, at Mass General West, in the suburbs of Boston, while waiting for the scan that would make a picture of my abdominal blood vessels for my plastic surgeon.

I don’t know exactly what it was that triggered my emotional roller coaster ride, but I do know it started with feeling grumpy. Really grumpy. Grumpy that Greg and I were sitting in a non-descript waiting room in a non-descript highwayside building on a lovely spring morning. Grumpy that I couldn’t eat any of the sea salt chocolate in my bag. Grumpy that it was taking so long for them to call my name. Grumpy evolved into downright pissed pretty quickly. I was angry. What was I doing here, anyway? I’m a healthy person. I’m not sick. To hell with this.

And then the anger melted into tears, and I was so sad and so tired of waiting and worrying and trying not to worry. I was sad about having cancer, about having to have another IV to inject dye that would make me feel like I really was a 2 year-old, pre-potty training. I was sad about needing surgery and about the stress of working out all the details of taking care of a family and cancer concurrently. But they finally called me in, and it wasn't so bad.

I thought I was over it by the time we got to the second appointment, 3 hours later in downtown Boston. And mostly I was. But we were in a shabbier looking wing of the hospital, and the waiting room was windowless, devoid of magazines and full of people preparing for surgery. No matter how much I believe in my treatment plan, no matter how certain I am that the choices I have made are right for me, it is very difficult to be optimistic while sitting in a crowded room with no natural light or distractions other than fellow patients. There was a young woman beside us in a wheelchair, and she would periodically moan from the depth of her belly, a sorrowful and weary sound. I felt like that. I wanted to make that sound, too. Her caregiver would comfort her, and she would quiet. And then she would begin to cry and her wail was so desperate, I felt as though my own heart were breaking. Which, of course, it was. As it has over and over again these past few months.

These moments, like the tantrum and the deep despair of that second waiting room, they come, but they pass quickly. I’m lucky that the situations that breed them are so few and far between for me. There are many ways in which I am lucky. I know that, and I appreciate it. I have read that some cancer survivors view the disease as a gift of sorts. No one will ever convince me that cancer is a gift. While cancer may be an effective way to get life lessons quickly, I won’t ever be grateful for it. Perhaps for the lessons, of which I can already see the outlines, but not for the cancer.

I had hoped, when I sat to write, that I would pull something insightful or at least a little lighter out of the tangle of feelings that I had today. But I guess not. Maybe next time. Thanks for listening anyway.

make mine a double

2009-04-11T15:16:00.000-04:00

I'm getting really tired of thinking about my breasts. Tired of talking about them, tired of writing about them. Unfortunately, I'm not tired of having them, but that's another story. But I set out to write about this dreadful experience, and though I can gloss over much of it, I have to explain the process behind making the most difficult decision so far. Probably the most difficult decision I've ever made, though I do tend to forget things...

I know that I am lucky to have had a choice at all. Many women don't get to choose whether they will keep a breast or not, whether they have reconstruction at the time of surgery or later, whether they have one sort or another of reconstruction. Just as I am lucky that we caught it early, that I will probably get out of this whole wretched experience with surgery and little else.

The mastectomy on the left was a definite. The prophylactic mastectomy and the reconstruction were up to me. I would say that I have a fairly alternative view regarding health and medical treatment. I had both my babies at home. I've been seeing an osteopath since I was pregnant with Claire, and while he is an M.D., appointments with him don't bear much resemblance to your standard office visit. I treat my migraines myself and have started acupuncture to help me prepare for surgery and to later recover from it. I don't believe that Western medicine always has the answer, and I do believe that sometimes the Western approach is too drastic and invasive. Funny, then, that I should decide to remove what appears to be a perfectly healthy part of my body.

Ah, but there it is. It appears to be perfectly healthy. I now know that I can appear perfectly healthy (I do right now), and actually have this monster of a disease hiding inside. I now know that I have an increased risk of cancer in the apparently healthy breast because of the multifocal nature of the cancer on the left. I now know that I am, in fact, willing to take measures both drastic and invasive for the increased chance at a long life without so large a shadow hovering over me. I am electing to have the prophylactic mastectomy.

And then there is the reconstruction thing. Would it be so bad to be flat-chested? Probably not. But I'm pretty sure that I will be happier with a reasonable facsimile of what I am about to lose. And I'm pretty sure that I'll be happier with all my own skin and fat, albeit relocated a bit. The surgery is going to be long, the recovery is going to be longer, and I have no doubt it will be hard. But six or even eight weeks is a short time in relation to the amount of time I intend to live. You know, another 40 or 50 years or so.

These decisions wrung me out. I was not myself for a number of days while in the midst of making them. But my friends and family helped me sort through all the facts, to reach the best decision for me. In particular I need to thank a college friend who has just come through a similar experience, and Greg, who even got to watch a dvd about breast reconstruction. Thanks, too, to all who listened to me drone on and on about silicone and flaps and risk and scars. Now that I have made the decision, I feel lighter. I'm ready for the reality. I'm scheduled for surgery May 4. Wish me luck. But I'll probably post again before that. And maybe I won't even write about cancer.

one lump or two?

2009-04-07T14:27:00.001-04:00

The logistics of this cancer thing can be overwhelming. After the diagnosis there is research to be done, and doctors to be chosen, and appointments to get to. And sometimes, there are difficult choices to be made.

My diagnosis came after my first mammogram. A mammogram, mind you, that I really didn't believe I needed. With no maternal family history of cancer to speak of, certainly not among my closest relatives, I really didn't think it was an issue. I expected heart problems, diabetes, vascular issues. But not cancer. I went for the mammogram because I turned 40 last July and my doctor told me to. For good or bad, I tend to do what authority figures tell me to do. In this case, if it hasn't saved my life, it has almost certainly saved me a good deal of pain and trauma.

I was diagnosed with multifocal microinvasive ductal carcinoma in situ (DCIS) in my left breast. The microinvasive means that it has just started to move out of the ducts, which is not a good thing, but it could be worse. The multifocal means that it has started in a number of distinct areas, which means that it isn't really feasible to treat it by removing just an area of my breast. The whole thing has to go. If the cancer hasn't reached the lymph nodes, which we will know after surgery, then I won't need radiation or chemotherapy. I'll take an estrogen blocking pill for five years, and hopefully leave this nightmare behind me.

So I got the news about the one breast and promptly made an appointment with Dana Farber Cancer Institute in Boston. My surgeon told me during the first appointment that she and the radiologist at Dana Farber were concerned about an area on my right breast as well. By this time, I had more or less absorbed the news; the new concern threw me into turmoil once more. I did not immediately realize that I could simply elect to have bilateral mastectomies, which is what I am considering now that I know it is an option. Though it seems a bit drastic, I really, really don't want to go through this again. Even now, after I've had a mammogram on my right in Boston and the result was that there is no cause for immediate alarm, I'm not sure I want to wait and see.

So that is one choice that I need to make, and the other is whether to have breast reconstruction. Very interesting to me as I have asked for thoughts from my friends is the difference between the male view and the female view. This is by no means a comprehensive study, or even a study at all, especially since the male views are really just from a handful of fellows. The women have had varied opinions, though tending toward a vote for reconstruction. But without exception, the men have been less equivocal. They are supportive of me whatever I choose, but they believe, as one of them said, that "breasts are overrated." I found this somewhat surprising, and I'm sorry guys, but my breasts are not overrated. At least not to me. Expendable perhaps. But not overrated. I am very fond of them, and will miss one (or both) of them. Enough so that I probably will elect to replace whatever we remove, however inferior to the originals the new ones may prove to be.

the bright side

2009-03-29T09:53:00.000-04:00

I've been thinking about starting a blog for a while now, thinking that the particular challenges of reaching mid-life while experiencing some major life upsets would make for interesting subject matter. At 38, my best friend of two decades, and business partner to boot, died of ovarian cancer. Less than a year later I sold the restaurant that she and I had owned together, the focal point of my professional and social life for over 15 years. I was struggling to deal with my grief and with the new question of how I would support myself. I have had the very good fortune to be hired by Lisa Hall, trained and paid to handcraft her beautiful jewelry. I started playing with metal and stones on my own, and have been working to build a line of my own. So many ideas for a blog but I wasn't sure where to start. An exploration of mid-life crises in the new millenium? A catalog of the inspirations and challenges of a creative life with children? A list of my steps and missteps along a new business path? Some very clever distillation of it all, making sense of this crazy life for myself along the way?

While I mused and fretted and postponed actually writing anything at all, my life took yet another turn. Cancer. In late February I was diagnosed with breast cancer. While it is not a situation in which I had ever imagined finding myself, and certainly not one that I would have chosen, it has given me the shove I needed. I will begin by writing about this cancer. Because, of course, it won't be just about cancer. It will be about living the life I have. Examining the life I live. Making some changes and some difficult choices and pulling myself through this dark time, this shadowy place.

Lately, I find that I need to remind myself to look at the bright side. Usually it's not that difficult for me. I am, by nature, an optimistic person. Energetic and enthusiastic and willing to believe that it will always work out. But, you know, sometimes looking at the bright side is just not an option. Sometimes I just fall into the darkest and scariest places of my heart and mind, and I can't pull myself out. And maybe I don't even want to. I'm tired of always counting my blessings, seeing the glass half full, reminding myself that it could be worse. That can take a lot of energy, and sometimes I just don't have it.

Perhaps what I need to remember here is that "the bright side" actually relies on a dark side. And that the thing for me to do is not just to look at the bright side, repeatedly seeking out the light places. "It could be worse. I'm really lucky. I'll go write down something else in my gratitude journal." (Kidding. I don't have one. Though maybe I need one?) I think I need to actually turn these things. Move them, or move myself, until the darker sides are in the light. So that I can see. So that I can understand the pain and the fear and the uncertainty and all the rest of the dark things. Understanding them won't make them bright, but perhaps I can remove some of the pressure they exert, take away some of the sting. Shining a light on them won't make them go away, but it will make them easier to understand and therefore to cope with.

Well geez, I didn't mean to end up here exactly, but I suppose that it is an honest representation of where I am at the moment. Probably tomorrow I'll be able to look at the bright side...