Missy Diggs

Well, just when I was getting on a kick of updating every couple of weeks instead of once a quarter, I fell back into my old rhythms. And I’ll tell you why. Cause it’s been a hell of a month around here, that’s why.

I told you about the car crash, of course. Well, that has provided me with various and annoying inconveniences, such as Not Having a Car and Going to the Chiropractor Every Damn Day. I mean, I’m glad I wasn’t seriously hurt, and I’m seriously glad that neither the Vivid Girl nor the wedding cake were in the back of the car, but I’m still really irritated that there are people out there driving cars three times the size of mine without feeling the need to exercise at least three times the caution that I do. More would be better, cause honestly I’m not even that careful what with all the makeup application, phone calls, and passing snacks and drinks to the back seat though at least I do manage not to run right into people.

So anyway it was obvious that once I rested up a bit and stopped popping pain pills I had a bunch of stuff to do. Like deal with the insurance paperwork and go to the chiropractor and get a new car. But first I had to go to Houston to meet my new doctor and have a checkup and a treatment so I did that first. And, despite my determination to have the most. fun. cancer. ever. it wasn’t really that fun of a trip. For various reasons. My new doctor is good, though, and I finally found the secret of getting the right person to start my IV the first time so that I don’t have to listen to the chemo nurses moan about what bad veins I have while they stab with needles for 45 minutes in order to get me ready for a 15 minute treatment. But some of my paperwork didn’t get to the right place in time, and the chemo suite was running two hours late, and there were just generally some irritating aspects of the whole venture that made me feel that I would much rather be at home playing Bejeweled in my pajamas.

Which is exactly where I was for the following week, because even though my treatment wasn’t technically “chemo,” in that it’s a drug that is being used to prevent cancer rather than treat it, it still makes me sick. And even though the effects of chemo were somewhat predictable, the effects of this drug on me have been all over the place. Sometimes I get really sick with a fever and everything. Sometimes I get a weird rushing sound in my ears and my legs hurt for a couple of days. Twice in a row I had no apparent reaction whatsoever. This time I got depressed. And even though I have a personal rule against looking up health information on the Internet when I am depressed, I looked it up: depression is a known side effect of this treatment that occurs in 14% of patients studied. Why a bone medicine causes depression I do not know. Everything else about depression I know all too well. The kicker is that, even though my old rock star cancer doctor (from Italy, swoon!) thought that I need to take this medicine every three months, my new (stodgy, old, American) cancer doctor says that he will give it to me if I want it, but only every six months, and he doesn’t think I need it.

And both of these recommendations are based on the same study. Which apparently is the only one available. What’s a cancer patient to do?

Well, in this case, I guess I just need to plan ahead for the next treatment and make sure I’m in a cozy quiet low-stress place (Lake Tahoe, anyone?) with my iPhone charged and plenty of chocolate laid in. But that’s not what I did this time. This time I came home to where my husband and the Vivid Girl live, and I got up in the mornings, and I drove them around in Mr. B’s car. Cause of how I don’t have a car anymore. But the problem on at least two of the days was I got started driving them around but then I would start crying and falling apart, and Mr. B would have to leave work to take me home and then he would have to do all the driving around. On the third day I just stayed home and played Bejeweled and watched 30 Rock and got friends to come pick me up and drive me to the chiropractor. Much better.

So that week passed and then it was the next week and I still didn’t have a car. Because of how I still had to deal with the insurance paperwork and by that time it was also obvious that I should have gone to see a personal injury lawyer and also I was so irritated that I had decided to declare war on SUVs and if I can’t get rid of them through legal channels I guess I’ll have to turn to more unconventional methods and then also I was still spending all my time at the chiropractor.

But, and here I come to the point of the post, I realized that all my problems were not because of the car crash at all. They were because Mercury is in retrograde. Or, it was, at the time. And even though I don’t place a whole lot of stock in all that astrology stuff I do place a bit of stock in it and here’s why. For two years when I was in college every single guy I was ever attracted to was a Scorpio. I could walk into a party with 50 people, only one of whom was born in October or November and that’s the one I would end up talking to. Every single time. Now, a lot of people I love are Scorpios (my mom is a Scorpio! and the Vivid Girl!) but any astrology book will tell you that it is not a good love sign for me, a wet and weepy Cancer girl. And I still don’t know what to make of the fact that for two years I was really attracted to what could only be dangerous, but I was pretty damn convinced by the numbers. It just wasn’t statistically possible for all the guys I met during two of the most social and flirtatious years of my life to have the same horoscope unless astrology is true.

So even though I like to think of myself as a Scientist, I had to admit that I was overwhelmed by the evidence. Just as, since then, I have been completely overwhelmed by the evidence that when Mercury goes into retrograde life goes into chaos. Total communication breakdown. Complete inability to do paperwork. I can’t schedule a meeting, get a good cell phone connection, or have a civil conversation about money with my husband. (This may have something to do with the fact that my husband, as a Gemini, is ruled by Mercury. Or, who knows? it may not.)

So here it is, more than a month after my car crash, and I still don’t have a car. Or an insurance settlement. Or a blog post. Because of Mercury. Because it has been an inauspicious time, all around. But as we move out of the shadow of Mercury in retrograde I can feel the auspiciousness rising. My sources tell me that things should be all cleared by May 28. And a good thing, too, cause that’s when the Vivid Girl gets out of school. For the whole summer.

Lately I have been telling everyone on Facebook what I put in my green smoothies everyday. And the funny thing is that I have been getting a lot of comments and questions, and it seems like instead of being freaked out by the whole concept of green smoothies, a bunch of people are actually thinking something like, “Hey, that sounds like something I should get into.”

And so I thought it would be a good topic for a blog post, especially since it does seem to be about time for my quarterly update. (jeesh, where does the time go? well, that’s a whole ‘nother blog post for sure. Look for it in June or so.)

I have always liked greens. My dad grew up in Arkansas and so my sweet midwestern mother would valiantly try to recreate the meals he loved and remembered, with varying levels of success. Liver and onions, with the liver cooked until it is chewy and tastes like the tongue of a shoe soaked in blood: ewww, yuck. Stewed tomatoes and okra, with the okra so slimy that it is almost impossible to spoon out just one serving from the bowl: no, thank you. A mess of greens, cooked with bacon until the fat turns green and the greens are nearly vapor: yes, please, and I’ll eat my sister’s serving as well.

I have also always felt that every truly good day contains a salad. I had a friend whose family liked to tease their mother about how she could not eat a dinner that didn’t begin with a green salad, no matter where she was or who was paying. They bought her a t-shirt that said “Veni, Vidi, Veggie: I came, I saw, I had a salad.” As a salad lover myself, I wanted one of those shirts and I was sure that EVERYONE would want one. Obviously this was the next great t-shirt, the “I’m with stupid” of the 90s. Strangely, I’ve never seen another one. I guess they didn’t really catch on.

But even though I willingly ate greens (and sopped up the pot liquor with my cornbread) and loved salads, I still needed to be clued in to just how much I liked the green leafy stuff. The next clue came from a woman I met in a series of self-realization type seminars I did. One of the things we were working on at some point was figuring out how to care for ourselves so we could get out there and do all the unreasonable and powerful things we were supposed to be doing all the time. This woman said that she felt best when she ate greens at every meal. At every meal, y’all! My first reaction was, that’s weird. My second reaction, right on its heels, was How would you even know that? and my third reaction, the one that stuck, was I bet I’d feel better if I ate greens at every meal too. It has taken me years to even get close to managing anything like that. (There is one other thing that has stuck with me about this woman, and so I have to share it here because I probably won’t have any reason to bring her up again: she said the word “donkey” as if it rhymed with “monkey.” Seriously, isn’t that odd?)

Finally, what happened is that after my cancer treatments were pretty much finished I started wanting to eat the healthiest diet I possibly could. And I read lots of books that seemed at first to take a lot of the joy out of life. And some of these books are pretty fringey and weird, and some of them are pretty mainstream and well-researched, and a lot of them say the same thing. And one thing they say is that green leafy vegetables are the key to health. And this is not just in the yeah yeah yeah I know eat more vegetables way: some of these people advocate eating TWO POUNDS of green leafy vegetables EVERY DAY. And,  basically, because there is no way to really do that if you have to actually chew every bite, green smoothies are the way to go.

But then it turns out that green smoothies have their own benefits, aside from just making it even remotely possible to eat the amount of greens recommended. For one thing, when you blend the hell out of your greens, you take out some of the work of digestion. This is a boon for people who have difficulty digesting vegetables (many cancer patients fall into this category), people who have trouble chewing or eating large quantities of food (hello, cancer?), and people who simply want to absorb as much nutrition as possible from every ounce of their food.

When it comes to nutrition per ounce, greens are the hands-down winner. They have crazy high nutrient density, which basically means that 100 calories worth of green leafies has more nutrition than 100 calories worth of anything else. It is also a relatively large serving size of food so it’s filling and it can be a lot of work to eat. However, stick that stuff in a high-powered blender, sweeten it with fruit, and stick a straw in it, and you can slurp up more nutrients for breakfast than most people eat in a week.

I started making a green smoothie for breakfast almost every day. It was hard at first, partly because I burned out my trusty old Oster blender in the first week. Also because it is hard to figure out how much produce to buy, how to keep it all fresh, and what combinations will taste good. Luckily for me, the taste is not a huge issue because it turns out that I will drink almost anything that you can pour out of a blender and suck through a straw. And there are lots and lots of recipes available, both on line and in books. And, though I still can’t afford a Vita Mix, the rock star blender for the green smoothie lifestyle, I bought a Breville with a glass pitcher and have learned to live with it. (Many green smoothie lovers also advocate the Blendtec but I don’t like it because the pitcher contains dangerous plastics, and the website has a bunch of research claiming to prove that dangerous plastics are safe. I just hate that.)

Here’s the question everybody asks, and that I don’t know for sure how to answer: what benefits have I experienced from drinking green smoothies?

The first benefits were unexpected and totally clear: by the third day of green smoothies, my chapped lips were smooth and soft, and my fingernails seemed stronger. Soon after that I experienced a welcome change in bathroom habits. The other benefits are harder to define and explain, but I believe that drinking green smoothies is the single best thing I am doing for my health, and I would never want to give it up.

Here are some things I have noticed, that I think come from the greens:

• I don’t crave sweets anymore.
• I don’t experience blood sugar crashes like I always did before. If I get hungry, it’s not a crisis. I can wait a while to eat and hunger has become a pleasant sensation.
• I sleep better, and fall asleep more easily at a reasonable time.
• My teeth feel cleaner, my breath is fresher, and my sweat smells clean.
• My mood is more stable.
• I have a much greater sense of well-being.

In some ways, it’s vague. In other ways, it’s totally clear to me. I love the clean and  bitter taste of greens, I love knowing that I have had half my veggies for the day before 9 am, and I love thinking of all the precious nutrients being released from their cell walls and ready to enter my blood stream through my fancy hand-blown glass straw. It’s better than chemotherapy, I’ll tell you that! It’s virtue in a glass.

And the rats, the lovely pet rats, they really do love the green smoothies. And that gives me a good feeling, too, because I remember some study about how rats wouldn’t eat white flour, and I like to think they are attracted to what is good. It’s also just so cute to watch them pull themselves up on the edge of the glass and take a sip!

Here’s a copy of an email I just sent to my lovely and wonderful support group, in response to recent news reports about some government panel’s new mammographic screening recommendations.

Y’all have probably been hearing the news about the government panel that just issued new recommendations for mammographic screening, and what they said was: Don’t worry about getting mammograms every year when you turn 40. Just wait til you’re 50. Some people have also gotten the idea that it’s not worth it to do self-exams, either.

I’ve been reading a lot of reactions and debate about this recommendation from all the folks in my various cancer communities, and here’s what they (and I) think:

These guidelines are based on some kind of huge “public health” financial model and do not actually apply to individual people. For most individuals, the most prudent thing to do is go ahead and get mammograms starting at 40. Or before that if you notice anything or feel worried. And definitely continue to do self-exams.

Here are some facts to take into account:
Most cancers and recurrences are found by patients, not by doctors or through screenings. (so do self-exams!)
Most women who die of breast cancer were not receiving annual mammograms. (so get mammograms!)
Most women who develop breast cancer have no family history of the disease. (you may be at risk even if you don’t know it!)
Men can get breast cancer too. (so if you think something’s going on, get it checked out!)

It doesn’t have to be a lump to be cancer. Monitor any change in the color, shape, texture, appearance of breast tissue. IBC, for example, often starts out looking like a rash or a bug bite. If you notice any change that lasts for more than two weeks, see a doctor and ask them to rule out cancer.

Here are some statements that doctors sometimes make but that do not count as ruling out cancer:
“If it hurts, it’s not cancer.” (sometimes cancer hurts. Why wouldn’t it?)
“If it responds, even slightly, to antibiotics, it’s not cancer.” (Trust me, this is not necessarily true. If it does not respond completely to antibiotics, it may be something other than an infection. Get a mammogram. If that doesn’t show anything, get a biopsy. Find out what it is.)
“If you had cancer, it would show up on the mammogram.” (not necessarily: IBC and some other types of breast cancer can be difficult or impossible to detect on a mammogram. If you have a clear mammogram and nothing else is going on, congratulations! If you are still concerned about changes you have noticed in your breast, keep going. A clear mammogram is good, but if you still have questions, get them answered.)
“You’re too young to get breast cancer.” (The youngest breast cancer patient is not even 12 years old yet. If she’s not too young, you’re not too young.)

I don’t usually send out bossy emails like this but the recent news is so concerning to me because even the people making the recommendations admit that lives will be lost. Mammograms are not fun, and it can be a huge relief to hear that the experts say you don’t have to start getting them yet. But I encourage you to do more research before you decide to wait til you’re 50 to start being screened. Find out what your doctor thinks. I don’t want any of you to have to go through what I’ve gone through. I was 37 when I was diagnosed, and I am the first person in my family to get cancer. I love you, so please take care of yourselves.

If you know me, you know that I love to eat. (Even if you don’t really know me, you may have been able to guess.) And what I love to eat is EVERYTHING. Especially if it’s wrapped in bacon, filled with cheese, or basted with its own juices. If it’s a roast turkey, I like to eat the crackly skin. If it’s a roast chicken, I like to break the bones and suck out the marrow. For a special restaurant meal, I love to be taken to the Salt Lick Bar-B-Q, where you can order family style and when you finish your platter of brisket, ribs, and sausage they will bring you another one! Or Fogo de Chao, where they give you a little round coaster, red on one side, green on the other; and when you turn the green side up a seemingly endless parade of gorgeous Brazilian men, each wearing gauchos and brandishing a skewer of meat, approach you and ask, “Would you like sirloin? Would you like lamb chop? Would you like butt roast?” until you are totally overwhelmed and swimming in your own juices and you slam the coaster back over to red so you can catch your breath and savor your meat. (All the while keeping your eye out for the guy with the filet, so you can flip back to green as soon as you catch his eye.)

I also like butter. And cream. And frozen custard. And the whole milk yogurt with the cream on top. I am a regular customer at a certain Indian buffet where I’m pretty sure they put crack in the meat balls. When I buy beef bones from our massage therapist who raises her own meat, I don’t just want the bones, I want the hooves. And the liver. And maybe the heart. (But not the brain, or the tongue…. cause that’s just gross!)  (unless maybe you have a good recipe?)

I also eat vegetables, and fruit, and grains or whatever. More than once in my life I have eaten so many orange and red vegetables that I have turned a bit yellow: once when I was a baby and my mother rushed me to the doctor convinced I had jaundice, and then again as an adult when I saw myself in the mirror under fluorescent lights and gasped at how very yellow I was.

So, up til now, I have not exactly been the poster child for moderation. (Don’t even get me started on chocolate!) Or, you know, healthy choices. Though I have actually always been interested in nutrition, and in supporting local farmers and finding the best organic pasture-raised animal products. And I have also always eaten a lot of salad (with blue cheese! and bacon!) and more collard greens and okra than your average person. I also got through pregnancy with the aid of a smoothie so healthy even my hoola-boola midwife was impressed when I told her what all I put in it.

In other words, I have tried to eat healthfully, more or less, but I have not hesitated to pursue full-out high-fat pleasure when it presented itself. Which was probably more often than it really should have.

And then I got cancer.

And the thing about having cancer, or at least one thing about it, is that at some point you are going to wonder why it happened to you. And you are going to think that maybe you did something to cause it… or maybe you just failed to do something to prevent it…. or maybe there’s something you could do now to prevent it from happening again. And if you’re like me, you’re going to wear yourself (and everybody else) out researching that last part of the question, which to me is the only one that even seems possible to answer or to make any difference at this point. When I was in treatment, I talked a bit about this stuff in my support group, specifically about how to figure out what to eat to prevent cancer from recurring, and my support group leader said that “cancer treatment is the worst time to make major lifestyle changes or major changes in your diet.” And this was kind of hard for me to get, at that point, though now I definitely see the wisdom. (Also, for getting me through chemotherapy with any shred of dignity I would now like to thank chocolate milkshakes. I couldn’t have done it without them!)

But now that I am pretty much out of treatment I decided it was time to find some answers. I had seen a nutritionist during treatment, who advised me to eat low-glycemic-index foods, to eat lots of protein (140 grams a day!), to always always have some protein whenever I had any carbs at all, to eat no bananas or other tropical fruit EVER (or melons), to eat nothing but protein and vegetables the day before chemo and then as soon as they started the drip to eat all the carbs I wanted for twenty-four hours. I went home and researched all the advice he gave me, and it was all based on scientific stuff. And more importantly, when I tried the protein/carb chemo routine I felt much better and had fewer side effects. I also lost some weight during treatment (many breast cancer patients actually GAIN weight, how unfair!) but not enough to be dangerous, and I stayed healthy enough to keep receiving treatment. So I called that a success at the time, but then when I got off chemo I started to gain back some of the weight I had lost (probably a sign of health but not the one I was really hoping for!) and I started to really miss bananas and to be really really tired of forcing myself to eat so much protein.

I also was feeling pretty worried about recurrence, and wanting to do whatever I could to prevent it. Most importantly to me, I was getting tired of worrying about what I was eating. And I was exhausted by the prospect of the cancer coming back and me feeling guilty because I hadn’t done whatever I could to prevent it. I just did not want to find out I had cancer and then spend my precious time thinking, “If only I had stopped eating those ice cream sandwiches!!!!” or whatever. So, basically I wanted some control over the uncontrollable, and I wanted some control over my own future mind.

So I started to research what to eat to prevent cancer. Here is an incomplete list of some of the books that I read:

Anticancer: A New Way of Life by David Servan-Schreiber

Eat to Live: The Revolutionary Formula for Fast and Sustained Weight Loss by Joel Fuhrman and Mehmet Oz

Green for Life by Victoria Boutenko

Animal, Vegetable, Miracle by Barbara Kingsolver

The Omnivore’s Dilemma by Michael Pollan

The End of Overeating: Taking Control of the Insatiable American Appetite by David Kessler

The Spectrum: A Scientifically Proven Program to Feel Better, Live Longer, Lose Weight, and Gain Health by Dean Ornish M.D.

The China Study by Campbell T. Colin

And now I am tired of listing the books, of which there have been many more, and it’s not like I’m recommending that you read these books, which in many ways have only made me sad. So instead of listing more I will just tell you some of the more interesting things I learned from them.

• When possible, eat organic. It really does make a difference. Organic food is more nutritious. Also, kids who eat organic food have fewer chemicals in their blood, or urine, or something. Seriously, it’s worth it.
• If organic is not available, but the food is good for you, eat it anyway. This applies mostly to fruits and vegetables, and beans and grains I guess. The benefits of the food really do outweigh the negatives of the way it was raised. Good to know, right?
• Eat more fruits and vegetables. You already knew that, right? Actually, here’s the important thing: eat MOSTLY fruits and vegetables, of which most are vegetables, of which most are green and leafy.
• Making small changes to your diet will result in small changes to your health. If you want large changes in your health, you are going to have to make large changes in your diet.
• Nutritional research is notoriously difficult to perform and difficult to analyze. Most researchers do not have enough evidence to prove anything, and they probably never will. If you want scientific certainty to guide your choices, you’re probably out of luck.
• The diet that is best for preventing heart disease is the same as the diet that is best for preventing diabetes, cancer, and other ailments. In most cases.
• And here’s the kicker: there’s plenty of research to suggest quite strongly that the risk of disease goes way way down as people consume fewer animal products. All other things being equal, or as equal as possible.

Well, shucks. Based on all this, I have already made quite a few changes, and I am working on making some more. During some parts of my nutrition reading marathon, I was despondently convinced that I would have to become a raw food vegan or something equally terrible. Moderation has never been my strong suit, remember. But as I read more, and thought more, and tried to gather some kind of consensus from all this information I found a more middle-ish path. On a very successful day, I eat mostly vegetables and fruit, beans, whole grains, some nuts and seeds. I eat some food cooked and some raw, in salads or smoothies. I aim to have more and more days like those. On the other days, I might have some cheese, or even an organic burger! I still have ice cream with my daughter, occasionally. I have been known to eat a cupcake here and there. It has been easier than I thought it would be, and I do feel better most of the time. I’ve lost some weight, and my tumor markers went down a bit.

But even though I am now mostly a vegetarian, and mostly a vegan one at that, I still cling fiercely to the idea of myself as a person who eats everything. I still get to be an omnivore, just not all the time.

When I was a kid, my mom had a book with the word “re-entry” in the title.  It was a guide for stay-at-home moms who wanted to return to the world of work. It always puzzled me, maybe because I never knew my mom before she was a stay-at-home mom, so the “re” seemed to be overstating things a bit. I think I had also heard the term “re-entry” in the context of space exploration, and I spent some time worrying about my mom (and other moms) “burning up on re-entry.”

I’ve been thinking about that a lot lately, as I try to piece my life back together after cancer treatment. I’m disoriented, time-shifted, jet-lagged, weary, bleary, timid, exhilarated, enthralled. Dealing with cancer knocked me off my feet. I keep thinking that it knocked me off my path. Now that I have my feet back under me most of the time, I don’t recognize the path I’m on. It’s new. I’m so relieved and grateful for this that it makes me swoon.

I’m trying to figure out how to let that gratitude guide my steps. At this point I am still letting my eyes adjust, trying to figure out which way to go. I’m going around in circles. I know for sure that I do not ever want to end up back on the old path, the one that led me to cancer in the first place. I also know that I might not actually have any control over that. It’s a balancing act: how to enjoy life to the fullest while doing everything I can to live as long and healthily as I can.  How to identify, and then give up, habits or activities that might increase the likelihood of recurrence. How to identify, and then take on, habits or activities that might increase the possibility of not dying of cancer. How to do all that without stressing myself out!

Reading the paragraph I just wrote, I am struck by two things: first, that it is a pretty accurate description of my state of mind, and second, that it is no wonder I am having a hard time relating to other people these days. I am all twisted up in a meta-, existential, out-of-context thought ball. Over the summer “MOMENTUM!” was my battle cry. I had just finished chemo and was taking on full-time mommying for the first time since I got sick. I made a plan, scheduled our weeks, and kept us in motion. And it worked. Now that school has started, my momentum has disappeared. My eyes feel huge as I look around at the whole big world and try to find the path for me. I think it’s just going to take some time. I’m trying to feel comfortable with that, even while I am haunted by the feeling that time’s a-wasting, that time is too precious to waste.

Regardless of what I may think about the American Cancer Society and other “big box” cancer organizations, (read this essay if you didn’t know there was anything to think about) I have found myself very pleased to see the big ACS billboard in town that says “‘Happy Birthday’ is a victory song,” especially as I noticed this sign a few days before my actual birthday. I am now 39, two years older than I was when I was diagnosed with stage IIIc IBC, and at that time I didn’t know if I’d be here now. Also, at that time things had been stripped down to their barest elements, and everything in the future was completely black and white: I’d either be alive, or dead (or, possibly, dying). I couldn’t imagine that I would be alive, still healing, energetic enough to take my daughter swimming several days a week but still needing a nap on the weekends. I couldn’t imagine that I would have the stamina and energy to swim for an hour in Barton Springs but not the immune system strength to protect from bacteria in the water. My diagnosis was a huge disruptive obstacle and I couldn’t see past it at all.

Now I’m older and hopefully wiser and definitely more psyched to be here than I ever thought possible. AT one point in the early stages of my treatment I ran into an aquaintance at the toy store, where we were both shopping for presents for the same birthday party. I didn’t know this woman well, but felt that I knew her well enough to answer somewhat honestly when she asked, in a meaningful way, how I was doing. I said that I was tired, that treatment was hard, that I didn’t have the energy to get through the day, but that other than that, I was doing pretty well. She said brightly, “But it’s gotta make you love life, right?”

Well.

I can say now that cancer diagnosis and cancer treatment did not so much make me love life. Sometimes I felt guilty abou that, especially when I was afraid that I might not have much life left and didn’t want to spend what time I had in misery and fear. But cancer SURVIVORSHIP, now that’s different. There are some things about my life as a cancer survivor that really suck, and some that are just nuisances, but YES, by golly, surviving cancer sure as heck makes me love life.

It makes me love life so much that it’s sometimes scary. Because there is still that shadow circling around…. or maybe it is a flock of shadows, because there are the more likely scenarios (recurrence being statistically quite likely) and then there are the things that are not cancer but that could still cause my untimely death…. some of these are related to my cancer and its treatment (infection, for example, or heart damage caused by chemotherapy) and some of them are the random unexpected things that could happen to any of us at almost any time, but that we usually manage not to think about much. Car accident, you know, or seemingly minor head injury…. blood clot to the lung,.. hanta virus….swine flu… whatever.

One of the things that the cancer experience has left me with is a tiny little case of PTSD. This is pretty common among cancer survivors and so it was fairly predictable, but still it was something I couldn’t imagine living with, back when my only concern was whether I would get to live at all. So far, for me, it has mostly just meant that I am more aware of those circling shadows than I’ve ever been before. Though it has also made me a more difficult patient (for the first time in my life I am afraid of needles) and made it impossible for me to drink bottled water or any kind of icy drink out of a styrofoam cup. At least those last two are potentially better for the environment!

It has also left me with a poor memory, a weakened immune system, and a permanently damaged lymphatic system that requires lots of daily maintenance. I hope to post soon with pictures of the various garments, machines, and accessories that are required to keep me from swelling up in a painful and disabling way. (Won’t that be nice for you all?)

But this is a post about my recent birthday, and how glad I am that I got to have a birthday, and how much I hope to have many many more. And how I hope to enjoy them in good health and good spirits, and how I enjoy once again having a future that (though I am aware I really can’t see it at all) I can once again imagine in color and texture and light.

It makes me want to jump up and march around to some kind of fight song or victory song. The Notre Dame Fight Song being the one I know best of all, it’s the one that comes to mind first. I can hear it now:

We never stumble, we never fall

We take chemo infusions of wood alcohol

We’re the young adult cancer survivors

And we want to have more birthdays!

Or something like that, anyway.

I finished chemo a couple of weeks ago (yee-haw!) and while I am feeling quite a bit better I am still not quite up to par. I took the Vivid Girl on her class end-of-year field trip extravaganza the other day (boat ride on Ladybird Lake, then swimming and lunch at Deep Eddy Pool), which was immediately followed by Trophy Day at gymnastics…. and now it’s three days later and I’m still not back in full swing.

Meanwhile I have been taking a fabulous Artist’s Way workshop, based on the book by Julia Cameron, and it has stirred up some creative energy that I had lost touch with for awhile. Unfortunately, I am still at a point where I have more energy to dream up things to do than to actually do them.

So my list of Virtual Crafts (crafts I don’t actually do, but which I investigate on the Internet) is growing and growing. And I am doing a lot of pretend online shopping too, in which my wishlists grow longer and longer.

Here are some of my favorites right now:

Go to Etsy.com and do a search on “steampunk.” Thousands of fabulous items will appear! Including this awesome Kraken necklace and this gorgeous and lavishly priced dress!
Also this lovely journal and this awesome magnifying lens that clips onto your glasses and makes you look like a mad scientist.

I have also been spending a lot of time looking at the Retro & Mod fabrics on fabric.com and imagining myself spending the summer looking cool and crisp in swirly dresses.

Of course, that means I have to go back and read all the archives at A Dress A Day.

And sometimes I have to watch old movies with great dresses for inspiration. A recent fave: How to Steal a Million with Audrey Hepburn and Peter O’Toole. You can Watch It Now on netflix.

Yesterday, we welcomed our new Saturday babysitter into our life (the Vivid Girl is so happy to have a babysitter again she wanted to throw confetti to welcome her!) and Mr. B and I went to the Blanton (WARNING: JAZZ! or try this link) to see the Birth of the Cool exhibit. It was good, though not quite as extensive as I had hoped. In particular, there were no clothes and not enough pictures of clothes. I also would have liked more furniture and objects of a household usefulness. More of everything! There was an awesome birdbath and some great architecture photography. We also popped upstairs and enjoyed looking at the fabulous Antiquities and Modern/Contemporary Art (some of which we thought was crazy though someone obviously loves it and some of which we loved though other patrons clearly thought it was crazy).

After that, we hopped on over to the east side to check out the book store Domy. It was awesome, and we both want to go back and spend more time there. The people working there were super nice and helpful as well. They had the kidrobot Luckies zipper pulls designed by Friendswithyou so we got some and mine was a cute little swirly piece of candy which I immediately put on my new puffy night vest. They also had the new book What It Is by Lynda Barry and Mr. B bought it for me as a gift. He said there was so much stuff he wanted in the store that he couldn’t narrow it down to what he wanted the most so he will have to budget some money and go back with time to decide. The store sells gift cards so I think we know what Mr. B is getting for his birthday (coming up on June 5)!

And now I am tired of doing the links and I just took my chicken out of the oven (Sunday dinner!) so I am going to say bye y’all! and I hope to be back soon!

In my dream world, no one would ever get cancer.

In my next-best dream world, those of us who do get cancer would breeze right through treatment (which would be 100% effective) and would then get right back to normal.

In this world, though, cancer strikes all kinds of people it should really leave alone and the treatments are not too breezy.  For me, I would not say that the treatment is worse than the disease, because if I had declined the treatment there is just about a 1% chance that I would even be here to complain about it. But I will say that it has not been very much fun (despite my determination to make this the Most. Fun. Cancer. EVER!). And getting back to normal, well…. that’s actually never going to happen. In cancer circles they often refer to the time after treatment as the “new normal” but I’m pretty sure I’m not even there yet.

Obviously cancer treatment has all kinds of side effects… some that show up right away, some that take some time to appear, and some that just linger as a possibility to keep you on your toes. Some of these side effects are too small to complain about, some are temporary, and some are permanent and a real pain in the ass. (One of the most annoying “side” effects of some cancer treatments: CANCER!) For the past few months, I’ve been struggling with lymphedema, a permanent and extremely annoying result of having lymph nodes and lymphatic tissues removed by surgery and/or damaged by radiation.

When I had my surgery, I was less upset about losing my breasts than about losing my lymph nodes. I mean, yeah, they had cancer in them, but I was still using them! But the cancer was using them too, to spread itself throughout my entire body, and so obviously they had to go. A month or so after the surgery I noticed that my right arm (aka “the affected arm”) was achy and tingly and puffy-feeling in a way my left arm was not. A local lymphedema therapist diagnosed me and gave me some tips, and when I was in Houston for radiation I saw the PTs at MD Anderson almost every day of my treatment for massage and teaching. I also got a compression sleeve and gauntlet to wear on my right arm, though the PTs there didn’t think I needed to wear them all the time, just whenever I seemed to need them.

As time went on, I still had problems and so I went to see a lymphedema specialist here in Austin. She told me to wear the sleeve and gauntlet every day, which I now do, and it helps. I was starting to feel like I needed to wear it at night, too, so she taught me how to wrap my right arm in short-stretch bandages every night before bed. It makes me look like the Michelin Mom, but I feel better when I do it, so I do it. I also have a lymphatic drainage massage that I am supposed to do at least twice every day, and a set of arm-flapping exercises, also twice a day, and as long as I do all these things and don’t do too much repetitive motion or heavy lifting my arm is okay. The sleeve/gauntlet thing is not attractive, and even though it’s supposed to be discreet because it’s flesh-colored it generally causes people to ask questions or to be afraid to shake my hand lest they hurt me. So it’s a little intrusive and it’s high-maintenance but it’s not so bad.

Meanwhile, though, the right side of my chest and the area under my arm on the right side has been achy, puffy, tender, and all that jazz. Well, guess what? you can get lymphedema there too, though this fact is not uniformly recognized by the medical community. It’s called truncal lymphedema, and learning how to deal with it has become somewhat all-consuming for me over the past three months. One of the complications of lymphedema (or side effects of this side effect, if you will) is that it decreases your body’s ability to fight off infections…. because my lymph nodes are gone and my lymphatic system is damaged, there’s a tendency for lymph to stagnate, basically, and infections love stuff like that. At first, we were hoping the massage/exercise routine would be enough to keep the truncal lymphedema under control, but then I got an infection in my right axilla (armpit) and chest wall that put me in the hospital for two weeks and we realized we were going to have to step it up to keep things under control.

So now I’m on long-term antibiotics, and I have a relationship with a professional “fitter” who works at a medical supply boutique and sells people like me stuff like this:

There is a bra-type thing that works for this but initially the fitter thought that the bra only provided the correct compression when used with prostheses. I was pretty irritated by the idea that I would have to wear a bra after all, and totally enraged that I would then “have” to wear prosthetic breasts –not because I wanted to, but because the therapeutic garment wouldn’t work properly without them– so I chose to go with a custom-made “vest” instead. Until the vest came, I went out and bought some stretchy “support” undergarments (also called “body shapers”) which actually helped a lot. Then the vest came in. It’s thick cotton beige material, with a huge zipper up the front (but first you have to fasten the hooks and eyes). It covers me from collar bone to hip bone, and from shoulder to shoulder. It makes me look like I just escaped from a sanitarium, and I cried for a couple of hours the night I first brought it home.

When I wear it, it helps a lot. More than anything else I’ve tried. But it’s hot (OMG IT IS SO HOT!) and I live in Texas. I literally have ONE SHIRT that I can wear that will actually cover the thing, and it is institutional in its ugliness (OMG IT IS SO UGLY!). And while I am grateful for the help I get from this thing, I am made acutely miserable by having to wear it.

Someone on one of my message boards pointed out that there are more garments available for people who “support” breast cancer (think pink!) than for people who have actually HAD breast cancer. I think this is shameful. I also recently read a study that showed that there is a much higher unemployment rate among cancer survivors than among the general public, especially among women, and especially among women who had had breast, uterine, or ovarian cancer. I think this is highly suspicious. My crazy brain is telling me that if elite athletes needed garments to provide compression someone would design something much more stylish than what has been designed for me, and I think that something needs to be done about that.

So that’s what’s been going on with me lately. I’m wearing my vest as much as I can stand to, coming up with alternatives for days when I can’t (say, because I’m taking my kid to an outdoor concert at SXSW or because I washed it and it takes more than a day to dry), and actively pursuing Plan B.

Because I am going to be dealing with this for the rest of my life. And there has got to be a better way.

Well, I probably should have known. But I was so inspired by the images I have seen of women who had tattoos designed for their unreconstructed post-mastectomy chests that I decided pretty early on that I would do that too. I have spent some sad hours cheering myself by looking at pictures of other people’s tattoos and researching tattoo artists who do this sort of work. It seemed like a way to reclaim that part of my body, to transform the scar into something beautiful and meaningful, to use it to create a story about this experience that ends with strength and beauty.

It also seemed like it would make it more fun to go topless, which I apparently can do now, and might even give me the courage to try it.

Also, Mr. B really liked the idea.

But, the other day I graduated from my physical therapy at the lymphedema clinic. I asked the doctor and therapist a bunch of questions about traveling to the mountains, about caring for my bandages, about how I would know when it was time to make a return visit.

and I asked about some advice I had been given by my breast surgeon and other breast cancer survivors, regarding the little poochy pads of flesh that remain under my arms, like little nippleless armpit breasts. So far, everyone has told me in a very offhand way, “Oh, Liposuction will take of that. Just come back in a year or so and we’ll zip it right out of there.” So I asked the Wound Care and Lymphedema doctor about that. “Doesn’t liposuction,” I asked, “disrupt the lymphatic system?”

Well, smart readers, I’m sure you can guess what the answer to that was, just as I had already guessed it. The doctor went on to remind me of all the horrible things that can happen as a result of liposuction, and then of all the dangers of any surgery: MRSA, for example, failure to heal, “bleeding difficulties,” etc. He strongly advised that I strenuously avoid any surgical or medical procedures that are not in the direct interest of saving my life. (In other words, biopsy okay, nose job –or lipsosuction to correct appearance after bilateral mastectomy– very bad idea.)

Well, this advise is pretty much in line with my usual practice, so I felt pretty comfortable with it, but when I got home I started thinking, “But what about my tattoo?”

I am in a bit of an unusual situation, and I seem to make fairly unusual choices, so it is no big surprise to me that there is not a whole lot of information out there about the question of whether people with lymphedema can safely get tattoos.

But I did find this:

Tattoos for the Lymphedema Patient
When considering a tattoo, particularly in tissues with lymphedema, or at risk of developing it, the client should seriously consider the above concerns plus these additional warnings:

Anything that involves a needle stick into an affected limb is an invitation to infection. This risk is even greater when having a procedure performed that involves multiple needle sticks and in which the sterility of the equipment cannot be guaranteed.

Tattooing puts added stress on the lymphatic system in the affected area because 90% of the dye goes into the lymph nodes and stays there.

The swelling of lymphedema distorts the tattooed image. The resulting image may be very unsatisfactory.

The laser treatments required to remove a tattoo could be harmful to tissues that are already damaged by lymphedema.

from this site: http://www.lymphnotes.com/article.php/id/211/

So, as you can see, the answer is NO.

The good news is that thinking about the tattoo I wanted gave me some peace and a feeling of control when I really needed it. It also gave me a look at the faces and bodies of women who are dealing with what I am dealing with, and who have found a way to embrace their own bodies, their own realities. And I surely did need that!

And I guess in a way I am losing the dream of a fabulous tattoo when I don’t really need it anymore. I am feeling more comfortable in my body, I definitely feel that the choices I’ve made are in the best interest of my HEALTH, which is the most important thing to me, and I even have managed to find some clothes that fit and flatter as they say. I’ve also come to the realization that most people absolutely do not notice that I don’t have breasts, even people who haven’t seen me for a long time, since when I did. Even women in the locker room, glancing at me when I’m changing my shirt, have had no reaction to the sight of the flat, wrongly curved, deeply scarred and mottled skin on my chest.

So, no tattoo? No big deal. I was going to have to save a bunch of money for it anyway. Now if I save a bunch of money I can spend it on something else…..

Well, it’s been a heckuva year around here. And I am hoping for all the best for next year, which starts in just a few hours. Especially I want to find more time to be creative and get things done, and spend MUCH LESS time lying around feeling terrible.

The year ended nicely, and today I even graduated from physical therapy, which I had been receiving for my little lymphedema problem (lifelong complication of breast cancer surgery, hurrah for me). It doesn’t mean that my lymphedema is gone, but it does mean that I am now expected to manage it on my own. It’s a lot of work (self massage twice a day, exercises twice a day, wear the sleeve and gauntlet every day, bandage my arm to look like the Michelin man every night, bandage during the day for plane rides and high altitudes) but it is part of my new reality and really does seem manageable.

I am planning to treat myself to an extra sleeve, so I have one to wear while one is in the wash, and I am even hoping to get one of these stylish ones, from LympheDivas.

Now the only question I am struggling with is what to say to people who ask, “what’dya do to your arm?”

Usually I have my daughter with me, and I don’t want her to hear me lying to people about anything to do with my cancer… because I don’t want her to get that weird feeling you get when you hear people tell lies, the feeling that something is not right here, there’s something to hide or fear or be ashamed of. So I usually tell the truth: “Oh, I have lymphedema from breast cancer surgery.” Well, I tell you what: this makes people mighty sorry they asked!

So, even though I don’t want my daughter to hear me lie, I have started to wonder if there’s a better answer.

Here’s what I came up with:

“Oh, that. It’s just an old foozball injury.”

Here’s what my husband prefers:

“well…. I got caught masturbating.”

My physical therapist suggests, “Oh, I just have some swelling and this helps keep it down.” True but not dramatic, which I like. Though I do wonder a bit how important it is for me to let people know the truth about what has happened to me, what is happening to more and more young women like me every year…. Is it my job to educate people about cancer, about how it is all around us and it can strike anyone, how you never know what the person you are talking to is dealing with, how people who look just fine can have serious things going on? And will that help in any way to uncover the causes of cancer and help us change our environment so we can prevent it?

Or do I get to fly under the radar, slip through the cracks in people’s perceptions? I think the answer is yes, sometimes. To all these questions, and many others.