Missy Diggs

This weekend our little family took a spur-of-the-moment road trip to Dallas. On Friday we found out that the Wiggles were playing shows on Saturday in Dallas and on Sunday in Houston. We got great seats for the Saturday matinee and hit the road that morning to get to the show on time.

People, it was awesome.

I have had a fair amount of exposure to the Wiggles in the last few years. We started with some CDs that we checked out from the library. Then, in the past year or so, our Vivid Girl has been interested in watching movies… but most “children’s” movies are too scary and intense for her active imagination, so we have been exploring the world of not-scary-at-all entertainment. And this is the world of the Wiggles.

When we first started watching Wiggles videos, I must say I found them a bit creepy. For one thing, I think the Wiggles are a bit older than most children’s entertainers I know…. and they’re all male, which is a bit unusual….. and they have that sort of weather-beaten Australian look…… and I was on chemo, and I’ve discovered that the Wiggles plus chemo is, for me, a kind of irritating combination. (When I’m not on chemo, I like the Wiggles so much more!)

But, you know, the Wiggles have grown on me. Some of their videos are seriously funny: we especially love the one set at the Australia Zoo and starring the crazy and amazing (and now dead) Steve Irwin. For family movie night, we order a pizza, pop some popcorn, set up the PC (no TV), and snuggle up on the sofa to watch one of the many zany Wiggles adventures. At first I thought this would be an exercise in parental self-sacrifice, but I have been surprised to find that the Wiggles are good entertainment for all of us, most of the time.

My particular favorite Wiggle is Anthony (the blue one), while the Vivid Girl loves Murray (the red one). Our whole family adores the friendly pirate Captain Feathersword.

And now that we have had the whole Wiggles experience come alive for us at the concert, I have to admit I am a bit ga-ga for the Wiggles. They were amazing. The show was really great, with awesome stage design, choreography, great sound, amazing feats of derring-do, and really funny bits. Staging something like that, so high energy and intense, that can entertain children without disappointing or overwhelming them…. well, I think it’s a delicate business, and these guys totally nailed it. The fact that the show was also entertaining and fun for parents was a totally unexpected bonus.

and if you read the whole Wiggles biography on wikipedia, like I did this morning, you may be as impressed with them as I am. Considering that they are the highest-paid entertainers in Australia (okay, I realize they don’t have a whole lot of competition right now) they seem to have a lot of integrity and be genuinely interested in what’s good for children.

I do think it’s funny that I have seen two great concerts in the last couple of months: Tom Waits and …. the Wiggles. All I can say about that is, welcome to my world. My wiggly, wiggly world.

Shampoo is probably not the first thing you think of when you hear the word “revolution,” but there is a small —but growing!— movement of people who are giving up shampoo and other hair products for good.

This trend is called “going no ‘poo,” and if you do an Internet search on that phrase you will probably be surprised by how many hits you get, and how many of them are from the last six months or so. I’m telling you, this wave is rising!

I first heard of the concept after my daughter was born, when I was spending a lot of time lurking on the Mothering.com forums. Lots of natural living mamas over there, for sure. I was tempted to try it out myself but in the fog of caring for an infant I think I just forgot about it.

Then, last year, I heard there was a lot of talk about it on the message board for one of the crunchier local parenting groups. Since then, whenever I run into someone I know from that group, I always wonder whether they are using shampoo or not. Usually the kids are pulling us in all directions and I don’t get a chance to ask. But I have my theories.

Right now, after 8 months of chemotherapy, with my new hair about half an inch long and growing, seems like the perfect time to give it a try. Not only because this is the closest I will ever come to starting over with all-new hair (I hope!) but also because now that I have cancer I am even more uncomfortable with some of the ingredients in the “self-care” products we use every day. I know there are usually more natural versions of the products available, for a price, but many of those contain suspicious ingredients too (for example, a “food-grade paraben” listed in a “natural” product is still a paraben; I don’t care if the FDA says it’s okay to eat it). And paying a higher price for a product I actually don’t need doesn’t make a whole lot of sense to me anyway.

And the people who promote going no ‘poo claim that their hair looks better now than it did when they used products to clean and condition it. Supposedly, the shampoo strips your hair and scalp of natural oils and even bacteria that would otherwise be helping your hair look shiny and full. When those oils are stripped away, your skin produces extra oil to compensate. Then your hair looks greasy and feels dirty and you need to wash it with shampoo again. Conditioner weighs your hair down and keeps it from looking as full and shiny as it would if you had left it alone in the first place.

So they say.

Also, many of the things I’ve read say that there is a transitional period during which your hair will not look awesome, as your body adjusts to the job of taking care of itself naturally. Well, sure, with any new job, there’s a learning curve, I guess. During this period, and possibly beyond, some people like to “wash” their hair with a mixture of baking soda and water, rinse, and then “condition” their hair with apple cider vinegar. Otherwise, people just wash by running warm water through their hair, letting it dry, and brushing it to distribute the natural oils from the roots throughout their hair.

And so I think I will try it. If I’m going to go through a period where my hair does not look awesome, it might as well be now, when my hair’s too short for anyone to be able to tell. When I think of the money I could save by forgoing hair products for the rest of my life, I get pretty excited about what else I could be spending that money on…. like new lipsticks! Or, well, I’ll guess I’ll figure that one out later.

In an effort to stop “overdoing it” so I can hopefully get my surgical drains pulled soon, I have been spending a lot of time lying in bed, reading.

Luckily, I stocked up on novels from the $1 clearance shelf at Half Price Books.

What is so amazing to me whenever I go on reading marathons like this is how each book seems to link into the next. For example, the first book I was reading had a word (I don’t remember it now) that I’d never seen before. That same word appeared again in the second book, which was a totally different style of book, by a different author, set in a different time, everything different. Except that word.

Then I read a book where the main character noticed the chirping of the little pond frogs in the spring, called “peepers.” In the next book, by a different author, set in a different part of the country, guess what? Peepers again.

It goes on and on, this complicated coincidental web of connections. Of course I am the thing in common, the connections are all in my brain, but it’s strange and kind of eerie nonetheless.

For years I have wanted to keep track of the books I read, partly so I can go back and refer to books I particularly liked, partly because I forget everything almost as soon as I read it, and partly just for the sake of keeping track. Last fall someone invited me to join GoodReads, and I was totally hooked. I spent at least an hour every night logging books I’ve read, seeing what my friends had read, checking up on the most popular books, and adding books to my “To Read” list. For finding what to read next, GoodReads beats What Should I Read Next? hands down, even though I love that site too.

Then I got cancer. (Or the cancer I already had made itself known, or whatever.) And suddenly I didn’t want to record the books I was reading anymore. I didn’t want to be like (imagine whiny “Poindexter” type voice) Well, this cancer book is better than that cancer book, blah blah blah. Even though, you know, some cancer books ARE better than others. And while I certainly haven’t read them all (do you know how many cancer books are out there? A LOT!) I have read a slew of them.

But right now I am not reading too much about cancer, unless it happens to get one of the characters in one of books (and it does, of course, sometimes). And I would sort of like to start keeping track of my reading again. I’ve forgotten my GoodReads password, so it will take me some time to figure out how to get back into that.

And there’s just no way I have the energy to do my other favorite book-related activity, BookCrossing, which is awesome but just too many steps for me right now. You sign in, print a label, log your book, and leave it in a public place with a note saying “FREE BOOK!” Then, hopefully, the person who finds the book and takes it home will report it to the web site and–when they’re finished with it–leave it for someone else to find. They call it a “catch and release” program. I found a book at Central Market cafe once and was pretty excited to log it in and see where it ended up. (Lucky for me, it was a book I had been wanting to read!) I also had fun leaving books in odd places (among the cereal boxes at the grocery store, for example) and then checking to see if anybody had found them.

For now, I will probably just take all my finished novels to the hospital and leave them there for other patients. Hopefully they will find their way into the hands of someone else who is not too interested in the mysteries and romance novels that are usually available in the waiting rooms. And hopefully people who read the kind of books I like will keep leaving them in the waiting rooms for me, too.

*Extra credit if you knew that the title of this post was the first line of an Emily Dickinson poem.

**Extra extra credit if you also knew the second line of the poem: “to take you worlds away.”

*** You win the grand prize if you also knew that every Emily Dickinson poem (except maybe one or two) can be sung to the tune of the “Yellow Rose of Texas”. And if you didn’t know that, and knowing it has ruined Emily Dickinson for you forever, then I guess I win the grand prize. Although, actually, I have started to like her more as I get older. As far as the “Yellow Rose of Texas” goes, if you ever want to hear what the bass clarinet part sounds like, let me know. I’ll sing it for ya.

Sometimes it seems like Real Life slows way down, but this old blogosphere just keeps on spinning.  A couple of weeks have zipped by while I’ve been recovering from surgery, and I just haven’t  had much to say that would be of general interest. The things that are holding my attention right now are very specific, of overwhelming interest mainly just to me.

So I will post just to say that I am fine, I am healing quite well, and I am anxious to have my horrible surgical drains removed so I can really start getting used to my changed body. My family is hanging in there. Every stage of the treatment journey seems to have its hardest parts, and we are bumping over one and getting ready for another.

In the real world, amazing things keep happening as life moves on. Some of our favorite people have new babies, are taking awesome vacations, are getting married, are hoping to buy a house, are interviewing for really cool jobs, are coming home to stay. In the blogosphere, I am sad to see that some of the people I have come to know through my IBC message board have died from this invasive disease. It seems like life just keeps marching on, with its celebrations and its grief, even when I am curled up in bed for two weeks waiting to heal.

When I walked out of the hospital with my wonderful old friend the Reiki Master, the day after my surgery, I blinked in the sunlight and said, “wow.” As if reading my thoughts, she sort of chuckled and said, “Yep. It’s still here.”

Amazing.

Let’s say that in one week you are scheduled to have major surgery, surgery that will alter your physical appearance and leave you scarred for the rest of your life.

And let’s say that when you asked your surgeon if she had any pictures she could show you, of other people who had had the surgery, she totally shocked you by saying, “No, not really. I don’t have anything like that.”

And let’s say that all the books you have been able to find on the subject are either focused on how plastic surgery can make everything look almost normal again, or on how artistic lighting, photography, and PhotoShop can shift the focus of a photograph to make everything look all dreamy and almost normal.

Then let’s say you decide to go to flickr and search on the name of the surgery, and you find all kinds of totally straightforward and undoctored photographs showing all kinds of people before and after the surgery you are about to have. I am unbelievably grateful to the women (mostly) and men who have bravely posted pictures of their scars, their drains, their bandages, their stitches, their tattoos, and their specially designed garments to this public photo sharing site so that people like me can see what we are really in for.

And I would like to take a moment to draw attention to Rebel1in8, or Rhea Belle clothing, for her beautiful designs that allow women to dress in a way that flatters their new figures, without pushing the oh-so-common expectation that “post-mastectomy” garments are those that have pockets in the chest for you to put a prosthetic breast into (not that there’s anything wrong with that; it’s just not for everybody). I find her work incredibly inspiring and hope to embrace her world view as I learn to dress my new body too.

And the ability to find important information that is somehow missing from more traditional venues, that is one of the many many reasons that I heart the internet as much as I do.

Two weeks from tomorrow, I will be in the hospital in Houston, having a bilateral mastectomy.

Although I have known from the time I was diagnosed that I would have to have major surgery as part of my treatment, this particular surgery is my choice. Well, that is to say, the right side MRM (modified radical mastectomy) is not really optional, and I know that, but the left side “simple” mastectomy is “prophylactic.” The idea being that I won’t be able to get breast cancer in a breast I don’t have. (there’s approximately a 20% chance that I would develop cancer in the other breast over the next few years.) Of course, my decision is also based on things other than that, such as: the thought of being lopsided and asymmetrical drives me crazy; I don’t want my spine to be pulled out of alignment by having different weights on each side of my chest; I don’t want to “have to” wear a prosthetic on one side to avoid making other people “uncomfortable;” I don’t want to wear a prosthetic at all in the Texas heat; I suspect there may be cancer undetected in the other breast already (it sometimes happens, and since my cancer is hormone driven and my breasts have gone through several hormone-influenced changes in my adult life, I don’t want to take any chances.).

On the other hand, even though I have a lot of reasons supporting this decision, and even though I have been very sure that this is what I wanted almost from the beginning….. well, as the time approaches I realize it is not so much that I am happy with this choice as it is that I am unhappy with all the other ones.

And it kind of sucks to have to make an important decision when you don’t like any of the choices.

It is also almost time to tell the Vivid Girl about what is coming up next, and I have been dreading it for months. Dreading it to the point where everytime she throws a temper tantrum or misbehaves I secretly wonder if it because she senses my weird feelings and that makes her freak out.

There are several books for kids whose parents have cancer, and some are specifically about having a mother with breast cancer. But there is only one book for kids whose mothers are having mastectomies. Isn’t that amazing? One! Our child life specialist found the book for us, and she said, “It’s strange, because there are tons and tons of books for kids about amputations.”

Hmmm.

Again, it would be nice to have choices. Especially because this book, while there is nothing specifically wrong with it, does not address my particular situation. In this book, the mommy has reconstruction right away and tra-la! everything is fine again. So even when I read this book to my kid I will have to do some editing and rewriting. Because I am not eligible for immediate reconstruction, in the first place, and I am not planning to have any kind of reconstruction, ever, in the second place. And this is not a decision I need my four-year-old to second-guess.

It makes you wonder, how hard would it have been to produce two or three versions of the book, to cover more of the possibilities? It makes those Once Upon a Potty books seem even more like the works of an amazing genius: one for boys and a different, but nearly identical, one for girls!

Like Naomi Wolf, I find myself wishing for multiple versions of so many children’s books anyway: Alexandra and the Terrible, Horrible, No Good, Very Bad Day. Helen and the Purple Crayon.  Where the Wild Things Are with Maxine instead of Max.  Not instead of, of course, in addition to.

And this mastectomy book! I get making a book that address the most common situation. I don’t know the statistics or anything, but I’m pretty sure most breast cancer cases are operable and allow for immediate reconstruction. I’m also willing to believe that most women opt for immediate reconstruction. And I can see how the first book out on a subject would address the most common situation. But I guess that’s where I’m frustrated. The resources available seem to be years behind the situation.

And I just wish I had a book to read to my daughter right now, explaining how the parts of my body that have done some of the most intense parts of mothering her will never look or feel the same again, and I may never be able to lift her in my arms again, and it will be months before she can rest her head on my chest and snuggle with me again…. but I am still her same strong mama, and I will still be right here in every way that I can.

…. or maybe even if you do not.

Here is a blog I like to catch up on when I am feeling blue:

The “Blog” of “Unnecessary” Quotation Marks

It always makes me laugh, but of course I was an editor in a previous life.

And here is a short film you can “Watch It Now” on Netflix, about fact checkers and featuring Bill Murray:

FCU: Fact Checkers Unit

Mr. B laughed, and he is not an editor. So you may want to check it out.

I know I promised this blog wouldn’t be all about cancer, and I think I am doing pretty well keeping it mixed up and light-hearted, but then I sometimes feel like I am not doing enough to educate people about the horrible terrible kind of cancer I have, which is called IBC, or Inflammatory Breast Cancer. It is the most aggressive form of breast cancer, and it presents with symptoms that look more like mastitis (a breast infection that often affects nursing mothers) than cancer, so it is often misdiagnosed. In addition, it is very rare relative to other breast cancers, so many health professionals have never encountered it before, making it even more difficult to find a doctor who can diagnose and treat it properly.

Health magazine just published an article about a blogger and mama, Susan at Toddler Planet, who is also undergoing treatment for IBC. It is a really good article and even features a quotation from my very own doctor, so I thought I would take this chance to “bring the house down” for a few moments and offer some information to those of you who might want or need it.

A few more links to information that I have found helpful:

http://toddlerplanet.wordpress.com/2007/07/23/inflammatory-breast-cancer/

http://www.med.umich.edu/opm/newspage/2007/inflammatorybc.htm

http://ibcwatch.evidencewatch.com/

http://www.ibcresearch.org/

We will soon return to our regularly scheduled programming. Thank you, and good night.

Over the past couple of weeks I have been working on a couple of crafty little projects. I was wearing some super comfortable but super scruffy plain brown shoes one day and I thought, “If only I could make these shoes look as awesome as they feel!” So of course I headed straight for the handy dandy Internet and did some research and found out that there are people out there who paint their shoes to look however they want.

I decided that I wanted my shoes to look pastel, and metallic, and to have kitties on them. And for one to say “Good Kitty” and one to say “Bad Kitty.” So I ordered the extra special shoe paint from Dharma Trading Co., and when the box came I immediately broke it open and got to work.

Here is the result of that endeavor:

The back of the Bad Kitty shoe says “Is it Caturday yet?” and the back of the Good Kitty shoe says “Everyday is Caturday!”

Here is a link to the true spirit of Caturday.

While I was at it, I decided to do something about my favorite black boots, which were in such terrible shape that Mr. B was always suggesting maybe it was time for some new boots. But new boots cost money, and in my size (11WW, isn’t it terrible?) are not that easy to find, and anyway these boots still ARE great, they just didn’t LOOK great.

So I mixed up some bronze acrylic paint with some of this paint medium stuff that turns it into a more flexible paint suitable for fabric. Then I painted both boots totally bronze, with some help from the Vivid Girl. I wish I had taken a picture at that point, because they looked like grown-up bronzed baby booties and were pretty darn cool.

then I stuck star stickers all over them. I do have a picture of one of the boots at this stage:

then I painted all over the boots, stickers and all, with Neopaque black. Two coats.

When the second coat was all dry, I carefully pulled off the stickers. I was hoping this would give me “reverse stencil” effect, with sharp outlines on all the bronze stars peeking out through the black paint.

It worked a little, but two things went wrong: first, the corners of the stickers tended to lift up a bit, so black paint got under them, so the outlines were not that sharp. Second, when I pulled off the stickers the black paint sometimes pulled off with it from around the edges of the star. So I mixed up some more bronze paint and used a tiny paintbrush to sharpen up the points and fill in the middles of the stars. It was a lot of steps, but it turned out looking pretty good, and I can’t wait to wear them!

We also got possession of a pair of shoes that were too small for our friend Clarissa so we were going to pass them on to our friend Honorae. (Our house is often a hand-me-up/hand-me-down warehouse, which I love) But these shoes had some little pink leather flowers on the straps that were looking pretty sad and tired, and the toes were very scuffed up. So I painted over the pink flowers with new mardi gras colors, and painted flowers in the same colors across the scuffed up part of the toe. Pretty cute, I think.

In all cases, I sprayed the shoes generously with clear acrylic gloss when they were all finished, and let them dry for 24 hours. I’m hoping this will protect the paint and keep the shoes looking fresh.

Of course, I am pretty hard on shoes so I may have to paint these babies again someday. Which would not be all bad.

This has been one helluva week or so.

But first, let me introduce you to a storytelling technique that I learned from a play I saw on PBS many years ago. I think it starred Dick van Dyke and Cloris Leachman (But I could be wrong) as an older married couple who were broadcasting their last radio show after many years. It was called something like “Breakfast with Les and Bess” and I thought it was really good at the time. In particular, the actress who played the ditzy daughter was awesome. Details later if I bother to look it up. (It had Shaun Cassidy! How did I forget that?)

Anyway, the storytelling thing goes like this: the person telling the story starts out with an exciting, positive line, and everyone listening goes, “Yay!” Then a more unfortunate detail follows, and everyone goes, “Awww.” And it alternates like this for awhile, with your hopes rising and falling until finally…. well, I don’t know what finally happens. Maybe you just tell the story and keep piling up details until everyone is sick of listening to it and going “yay” and “aww” and then you deliver some sappy punchline. I don’t remember, and I’m not promising anything about how this post is going to go either. But if you want to play along, here we go.

About ten days ago, I had my very last chemotherapy treatment. (yay!)

And then I felt really bad for about 8 or 9 days. (aww!)

but I managed to have some fun anyway. (yay!)

But also I couldn’t really sleep or eat much and I was having the worst. ever. hot flashes. (aww!)

On Sunday we went to the Craft: magazine release party at the WorkShop, and it was really fun. (yay!)

The Vivid Girl won a door prize, which was a super-cool snappy pouch sewn together from fused plastic bags and line with cute fabric, made by Future Craft Collective. (yay!)

And I made a fairly cute button bracelet. (yay!)

And the next day, the divine Mr. B surprised me by revealing that he had submitted my Barbie project to the Craft: blog, and they had posted about it. (yay!)

And somebody left a comment saying that putting my own hair into my child’s doll was creepy and weird. (aww! or maybe Yay!)

And other people left comments saying that they thought it was cool. (yay!)

The Vivid Girl spent her own allowance this week on a sewing kit, which made me swell with pride. (yay!)

And I had a fabulous acupuncture treatment from the amazing Dr. Wang, and I could literally feel the weird hot flash energy leaving my body during the treatment, and I haven’t had a hot flash since. (yay!)

Though I still couldn’t really sleep last night. (aww!)

but I feel a lot better anyway. (yay!)

and now I am done with this post. (yay!)

except, my camera is out of batteries so I cannot post any pix now. (awww!)

I will post them later. (yay!)