Sunday, June 28, 2009

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.

Thursday, June 25, 2009

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.

Sunday, June 14, 2009

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.

Monday, June 1, 2009

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.