a gift for you

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

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

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

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

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

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

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

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

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

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

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

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

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."

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

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

(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

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?

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

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

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

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.