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.

jiggity jig, jiggity jog

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

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

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...