Missy Diggs

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.

We haven’t done it yet, but I’m hoping that this year we will manage to do some outdoor ice skating at the Whole Foods downtown. My current plan has us there on Christmas Eve (would be convenient as I have to pick up a certain something at Book People right across the street). Here are the details, from the Whole Foods Calendar site:

Friday, November 28th through Sunday January 11th

Fourth Annual Ice Skating on the Plaza

10:00 am - 9:00 pm $10.00 includes rentals

The Holiday Season is here!  Bring the family out to Whole Foods Market for Austin’s only outdoor ice skating rink.  $10 a ticket - includes skate rental and 50 minutes on the ice.  Tickets are available for purchase an hour before desired skating session.

40 people maximum capacity on ice (50 during private party)

To reserve a private party, please call 512-542-2225

Regular Hours 10am - 9 pm

Special Holiday Hours:

Dec 24^th - 10 - 7
Dec 25^th - closed
Dec 31^st - 10 - 7
Jan 1^st - 10 - 8

One of our freezers is full of old coffee cans, which in turn are full of water (now ice). Mr. B has plans to make some robot face luminarias following this method:

http://www.diynetwork.com/diy/ca_crafts_projects/article/0,2041,DIY_13721_2269907,00.html

Poor guy, I don’t know when he will ever get a chance to make them! I just hope the cans of ice have a shorter stay in the freezer than Vivi’s placenta (five years and counting…..)!

One of the things I loved about Christmas time when I lived in New Mexico was the lighting of the luminarias. I just found out that there is a luminaria trail here in Austin, for two nights only, and tonight is the second night.

I haven’t found much about it online, but here is a post from the Austinist three years ago.

If you live south or west, apparently there may be a similar event at the Wildflower Center: (from KVUE)

Luminations
Dec 13-14
Holiday celebration includes more than 3,000 luminarias, twinkly lights and torches in the winter gardens. Enjoy music, crafts and a special menu at the cafe. Hours are 6 to 9 p.m. Lady Bird Johnson Wildflower Center, 4801 La Crosse Ave.
AUSTIN
Call for info: (512) 232-0100
www.wildflower.org

As we get to this most craftiest time of the year, I am busy making lists of crafts I want to do. Of course, I have to add all these new craft ideas to my list from last year… which was added to the list from the year before that…  It’s turtles all the way down.

My biggest priority this year is to get an advent calendar made for the Vivid Girl before December 1. Here are some of the advent calendars I find inspiring:

magnetic advent calendar from love, joleen

Tiny Christmas Tree Advent Calendar from Scribbit

the classic felt tree Advent Calendar, this one from Kaboose.com

this gorgeous advent calendar from Craftster

the adorable Stocking Advent Calendar from Soule Mama

And there are more. Many, many more. In one dream (the one in which I have a differently-themed Christmas tree in every room of the house, natch) I have advent calendars all over the place. Maybe I can make one a year and soon they will definitely add up.

Last week I went through all our books and picked out the best holiday choices. I put them in a basket and stashed them away. I want to make sure I have 24 good holiday books so I can wrap them, put them in the basket, and use them for an advent calendar like this one:

Charlotte Mason Advent Book Box

Of course, I haven’t even gotten started on the Advent Calendar and I am already looking around at other adorable crafts. The Vivid Girl and I got all stocked up on the stuff to make these cinnamon dough glitter birds from Martha Stewart, but the dough recipe didn’t turn out on our first try (too sticky to work with, then the glue started to dry) and we haven’t had time to try again. Looks like there are some good troubleshooting ideas in the comments.

The next thing I want to work on is a wreath for the front door. After lugging around a box of wreath making supplies for years, but never getting the darn thing made, I realize I need to choose a different kind of wreath to make. Something easy and fast. My favorite is the gumdrop wreath from Kiddley via Martha Stewart, but Mr. B (perhaps wisely) is not too excited about all that candy hanging at the Vivid Girl’s eye level. Still, so pretty!

So now I am all about the button wreath. There are so many different possibilities! And it will allow me to dig into my button stash: about 20 years ago I bought two antique jars full of vintage beads from a junk store in Attica, Indiana, and I have been slowly working my way through them ever since. The Vivid Girl, of course, has gotten her hands on them and she is working through them much more quickly! Which means that to make the wreath I see in my mind, I will probably need more buttons. And this is where I may need help, because I have started bidding on buttons on eBay. Oh yes! Wonderful buttons, in beautiful materials and Christmas colors! I hope I will find the time to work on the projects I have in mind for these buttons, because right now I am very excited about them. But it does often seem that I am very excited when I buy the materials, and then… something happens.

Here are some links for buttony inspiration:

Button Wreath from CraftStylish

Button Flower Wreath from In the Treetop

A Button Wreath Tutorial on flickr

the button wreath ornament