Missy Diggs

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.

I just started playing around with the cute and awesome online word cloud generator at www.wordle.net. It is super fun and neato mosquito.

I had it make a word cloud of this blog and it was groovy. I think there’s some way for me to link to it but I can’t figure it out so if I get a chance I’ll ask Mr. B to help me. Otherwise, just go check it out for yourself. It could be interesting to put your writing in just to see what words you use the most. For example, I use “think” more than “know,” “hope” more than “dream,” and “water” more than “vinegar.”

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, that’s a long post title.

Here’s the deal: I’ve been in the hospital for eight days (that’s another story, but suffice to say: I’m alright and I’m going home tomorrow). When I came to the ER I figured I would be here a couple of days and I packed clean pjs, lots of books to read, sudoku…. but no baking soda, and certainly no apple cider vinegar. They gave me some kind of shampoo/body wash product, which I have been using whenever I get a chance to take a shower, but not as shampoo, since –as you may remember– I quit using shampoo several months ago when I was growing my hair out after chemo.

Well, I have discovered a few things about my hair since then:

1) It’s curly! just a little bit, but it’s been straight as a stick my whole life. I don’t know for sure whether this is “chemo curl” or whether it’s because I’m not killing my natural bounce with shampoo anymore.

2) the no-poo method works better for me in some water than in others…. when I go to the gym every day and wash my hair just in water (well, first sweat, then water) it is bouncy, shiny, curly, and clean-feeling. If I do all my showering at home, I need to add the baking soda rinse once or twice a week and even then things get a bit greasy in-between. (I haven’t tried the vinegar rinse yet, because I don’t have any way to store vinegar–which I buy in huge jugs– in the bathroom). Here at the hospital, greasy seems to be even more fast and furious.

so I’ve been thinking about giving up and going back to using shampoo. I mean, everyone else uses it, right? so if it’s bad for the environment it’s not really like I’m making much difference anyway! I’m just one person! And maybe I could find a shampoo that didn’t have any of the ingredients that I’m afraid might invite my cancer to come back, but that would still work for my hair type… and plastic bottles, I mean, it’s not like I never buy anything in plastic bottles….

basically, I am not feeling too good about going back to shampoo but I am not willing to have nasty hair just to be virtuous. I mean, yuck.

So I got back online to see what other people do if they are having these problems…. and I read some interesting things, including this from the Green Parenting blog:

I was considering giving up, which was a hard choice since I liked my textured hair, and so I did what any desperate person does in this situation: googled “no poo” one last time.

She referred to this article, which I had just read, and said it put her back on track.

so I am going to go home with new resolve and try again.

I also noticed that the Google search “no poo method” brought up many more results this time than it did last time. And that made me think, Hey, wait! Maybe I’m not just one person! maybe, just maybe, enough people will make enough changes that it reall will make a difference… to our health and to our environment. And that’s worth at least one more try.

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.