Bald Heads and Weather Girl Hair | Hair Loss and Wigs after Chemo for Breast Cancer

Perhaps the only picture taken of my while I was wearing my wig...
Perhaps the only picture taken of my while I was wearing my wig…

As I look back, I regret how I used this blog when I was going through treatment.  It was more of a weekly check-in, just to let people know that I was still doing fine.  Truth be told, sometimes I only checked in once a week because I was busy doing fun things and napping and just didn’t feel like spending my precious awake time on the computer.  But still, I wish that I’d had more pictures of all the fun things I was doing– pictures of me in my favorite scarf and fabulous boots wandering around Old Town with Sally, pictures of me in my favorite smartwool hat from Athleta hanging out at the bus stop with all my neighbors, watching the kids play.  Pictures showing that it wasn’t always all that easy, but that it really wasn’t all that hard, either.  And I wish I had pictures of those few times I actually wore my wig.

I didn’t think that I wanted a wig, but it really seemed like it would be easier for the kids if I had one.  Since insurance paid for it (or most of it), I went ahead and got one.  I did my best to get one that looked like my real hair, but really only wore it to church.  It felt so strange, so disingenuous to wear a wig over my bald head.  I’ve also always been a “fusser,” I fuss with my hair constantly.  I tuck it behind this ear, then that,  smooth it out over my neck.  Even with a good wig, that’s just not a great plan.  It starts to get all tangly and before you know it, all I could think about was how much my hair felt like the hair on Emma Clare’s American Girl Doll.  Not a good feeling.

One Sunday, apparently the Sunday after chemo (I can tell because the steroids made me all flushed for several days), the youth director took photos of everyone to make a directory of sorts to hang on the bulletin board.  As far as I know, this is the only picture of me actually wearing my wig, not just playing dress up. (Oh wait, I did find one other picture— even worse than this one– that I took the night after I had my head shaved.)

It was a really good wig, but I only wore it a handful of times.  I think I somehow felt stronger without the wig– like I was showing that I was strong enough and healthy enough that I didn’t need the wig.  That said, there are a lot of women who want to wear a wig for lots of great reasons.  My kids didn’t mind me being bald, and I was so thankful for that.  I have one friend, though, whose son found her bald head very upsetting, so she wore her wig most of the time.  If I were working, especially in an environment where I dealt with clients, I can see wanting to hide my cancer– perhaps they might think I wasn’t up to the task or that they were “helping” me by taking their business elsewhere. If I thought I were going to wear my wig, there are definitely some things I should have done differently.  A shorter, straight wig would be much easier to take care of and wear on a daily basis than the long, wavy locks I bought.  If someone were trying to do the “wear the wig everyday and keep the cancer thing under wraps” thing, I’d probably suggest she cut her hair into a short bob as soon as possible– a style that would be easy to replicate with a wig.  It was mere minutes into our first wig shop outing when Sally and I started referring to that as “weather girl hair.” I hope that doesn’t offend any weather girls.  But seriously, watch the news for a while and you’ll totally get it.  At any rate, if she’s got weather girl hair to begin with, when her hair starts falling out, a quick shave and a swap with the wig might not be all that noticeable.

It’s so funny to me that I desperately wanted to keep things normal for the kids, yet I thought nothing of showing up for a “normal” school event with nothing more than a scarf covering my head.  Either way, especially when she has cancer, a woman should do whatever it takes for her to feel stronger, more beautiful, more powerful.  She should do whatever she wants, whether that means having the best weather girl hair out there, or heading out with a shiny bald head and some great lipstick.

Kids Will Be Kids | (And a Pixie Grow-out Update)

zoo with turner

After my haircut last week, I was a chaperone on the first grade zoo field trip.  Being in charge of a big group of kids at the zoo is a nightmare. On this trip, though, they make a big deal out of getting a lot of parents to go, so I ended up in charge of Turner. And that’s it. Ironically, I realized that Turner and I haven’t gone on many adventures by ourselves, we always had Emma Clare in tow. He was so cute, holding my hand, and he was in charge of the map– choosing our next stop and directing us to our destination. (Which was probably a good thing, knowing my sense of direction!)  The arrival of three new elephants to the zoo complicated things and kept our time there short, but it was fun to have some one on one time with my boy.

unicorn with ecLest anyone worry that my hair is getting too short with all the cutting, Emma Clare would assure you that it is growing.  At the bus stop, she decided that I was ready for a more sophisticated hairstyle. She calls it my unicorn ponytail.  I haven’t had a lot of girl time with this precious one, either. But this weekend the boys are going camping, so I’m sure she’ll have some big plans for us. (I’m also nearly sure that it will involve Chick-fil-A and a pedicure!)

Buy One, Give One | Love Your Melon Hats

love your melon

 

Even before breast cancer was a part of my everyday life, I was uncomfortable with the “Pinkwashing” phenomenon– marketing all kinds of products in pink, promising that “a portion” of the sales will “benefit breast cancer.” And I’ve never even been tempted to buy a pair of Toms shoes, despite their philanthropic philosophy, mostly because I don’t love the shoes. (Their moccasin-style boots are starting to turn me, though…) But when I saw a feature on Love Your Melon on the Today Show this morning, I was instantly intrigued.

Two college students started the not-for-profit company as part of an entrepreneurship class at St. Thomas University in Minnesota.  They have grown that class project into a full-fledged 501(c)(3) non-profit, and each purchase of a made in the USA hat provides a hat for a child with cancer.  Cancer aside, I love their branding and the way they produce their hats– they are knitted in Oregon and the patches are sewn on, many by volunteers, in Minnesota.

But back to the cancer thing. I always had long, thick hair. I could never have imagined how much colder it is to have no hair! (Though it came in handy when I was having hot flashes…) And while everyone will tell you that you should buy whatever you want right after a cancer diagnosis because “you deserve it,” the reality is that even with good insurance, cancer is expensive. And seriously, who wants to spend lots of money on a bunch of hats just because they have to? I don’t know about other people, but I’d much rather spend my shopping time and money picking out a new lipstick or a pair of boots.

I was fortunate enough to have friends and family send me all kinds of lovely hats. There was the cancer friend who let me borrow some of her ugly chemo caps– the jersey knit hats that weren’t too pretty but were great for sleeping. A sweet friend dropped off the warmest North Face hat that has a lovely soft lining– perfect on a sensitive melon, and warm enough for all the time spent at the bus stop.  Another friend sent two stocking caps from our Alma Mater, and a St. Louis Cardinals hat, too. And then there was the Rastafarian hat complete with dreadlocks that my brother sent…

So the idea of gifting a cancer patient with a warm hat finds a soft spot in my heart. Together with the cozy look of the hats and the lovely branding, I was immediately drawn to the company.  Apparently, lots of other Today Show viewers were, too, and so their website has struggled to keep up and their inventory is shrinking. (So head on over, but be patient!) I’m really hoping that we have experienced this never-ending winter’s last gasp. But I’m still considering heading to Love Your Melon to stock up for myself and the kiddos for next year.  So many companies bill their products as “helping” raise money for a cause, but this company’s dedication to warming the heads– and hearts– of little kids with cancer while still making what looks to be a quality product strikes the perfect balance.

 

Wishes for a New Year

new years card

With Emma Clare’s busy Living Christmas Tree drama schedule this year, trying to find time for a family picture for a Christmas card was nearly impossible.  Last year, Sally took such lovely photos of our family just after I’d started chemo, and my hair was long and beautiful.  But it felt a little less than genuine to send out that photo weeks after I’d shaved my head.  So the back of the card featured a quick family snap with my bald head.  I’m not much of one for a long Christmas letter, so I went with the “a picture’s worth a thousand words” philosophy and just added the address of my blog in case anyone was curious.

So the year after you send out an “I have cancer, and by the way Merry Christmas” card is not the year to skip the card because your family is too busy to take a decent photo.  But after thinking about it, I decided a New Year’s card would be perfect. I wanted to highlight “healthy” hoping that would send the “I don’t have cancer anymore” message.  But we decided the back might be the place to make the message a little clearer.  And you might as well have fun on the back of your “I don’t have cancer anymore, and also Happy New Year’s” card, right?

Lego’s First Breast Cancer Minifig?

It’s been cold and snowy here.  The kids finally headed back to school and it was as if you could hear all the parents breathe a collective sigh of relief as we put their cold little bodies on the bus yesterday morning.

But filling five consecutive days off has been a challenge. We played (briefly) outside, made fires, made chili and chocolate chip cookies, and the kids played far too much Wii and Minecraft. (For the record, they also each completed one “big” school assignment and got some more books at the library.) But thankfully, they love Legos and have played a good bit with those, too.

DSC_0005 (2)

This is currently one  of Emma Clare’s favorite characters, she is reading a book about a Japanese-American family, so is drawn to the cherry blossom tank. But she showed it to me because she thinks it looks like me.  Apparently, this is kind of what my hair looks like when I don’t spike it up fauxhawk-style.

Legos sure have come a long way since I hoarded the trees and flowers to try to give my houses at least a little bit of a woman’s touch. Now, apparently, I have my very own Lego minifig. I must be big stuff.

Breast Cancer and My Kiddos

kiddos breast cancer

I met a young woman last week who was diagnosed with breast cancer a few months before I was and so we instantly started talking about our shared experiences.  Being moms, chemo, baldness, those wretched tissue expanders…  But as we chatted, she said something that left me speechless.  (And this blog would indicate that I am rarely speechless!) She hadn’t told her kids that she had breast cancer.  They range in age from preschool to upper elementary school.  I couldn’t imagine trying to keep that up– making excuses for missing out on activities because of doctors appointments and fatigue, explaining why people were bringing us dinner, hiding a port, scars, post-surgery pain…  But most of all, it exhausted me to think that she couldn’t let her kids know that she was bald.

That’s not the way we decided to handle it for our family.  Let me make it clear though, the way we handled it was definitely the best way. For OUR family. Not the best way for her family, she needed to make that decision, and there’s no way that I would judge her or try to tell her that she did it wrongly.

But it did get me to thinking.  There are probably women who struggle with how to talk to their children about their cancer diagnosis.  Or whether to talk to their children.  And when we had that conversation with the kiddos a year ago, it was a very raw time for me.  That fell into the category of things that I just couldn’t blog.

We decided to wait until we knew for sure the treatment course, I wanted to be sure that the kids got the full information when we had that conversation.  We wanted them to hear the whole story the first time. So once we knew for sure that I would have chemo and then surgery, we sat down with them.  I thought that it was important that we were honest with them and answered their answered their questions truthfully, but I know that there is such a thing as giving kids too much information.  Answer only what they ask, no more.

So when we sat them down, I reminded them that I’d had a couple of doctor’s appointments that week.  Then I told them that the doctors told me I had breast cancer.  Emma Clare gasped. Turner immediately said, “So you’re going to die, right?” Insert knife into heart. As quickly and as confidently as I could muster, I answered.  No. I explained to them that cancer is when some normal cells go out of control and don’t stop growing when they’re supposed to.  If the cancer cells get to an important part of a person’s body, that can make them die.  But my cancer was in my breast, and while they were important for feeding my babies, I didn’t need them to live. So I was going to have to take some pretty nasty medicine to kill the cancer that might make me sick and would make my hair fall out, and I would have surgery so that they could take out all the cancer in my breast.  But the doctors would do their very best to kill all the cancer and then make sure that I felt and looked as good as new when it was all over.  They didn’t love the idea of me being bald, and they really didn’t like the idea of me having to stay in the hospital overnight when I had my surgery.  But after we talked, I had several weeks before chemo started.  They had time to process, ask questions, and get used to the idea. They talked about it with us, with their teachers, with their friends. I think being able to talk about it made it less scary, little by little. By the time they went with me to have my head shaved, they were excited about it, and months later, they were even ok with the surgery, too.

I won’t say that we handled it perfectly.  I won’t say that it was easy. I cried a little.  I was honest and told them I was scared, too. (Maybe I should have been stronger?) At one point, Clay had to take over because my heart was broken, and so was my voice. But we told them that we had so much confidence in my doctors, and more than that, I was confident that God had a plan for me and for our family, and we would come through it all fine.  Believe me, just this week, I’ve had a couple of doses of reality.  Cancer isn’t pretty and pink, it isn’t easy, it doesn’t always have a happy ending, and my kids might not have the most realistic perspective of how bad it can get.  But you know what? I’m totally ok with that.  They’re just kids. They can grow up later.

Countdown

countdown blood tests

I’ve never been the cross the days off the calendar type of gal, but I’m getting dangerously close to that point right now.  Two official countdowns going on in my mind– six days until school starts and ten days until my surgery.  This last week before school starts is usually long and short at the same time– long because it is the last week and we’re all ready for them to get back to school, yet short as we try to squeeze in every last bit of fun. One afternoon already this week, I spent some time at the hospital, getting ready for that second countdown. Once again, I answered a battery of questions (Do I have heart problems? Do I have kidney problems? Has anyone ever noticed that I stop breathing when I sleep?) all with a “no,” and was thrilled to be able to say that I am taking no medication at all.  The nurse remarked that I was easy, so healthy. Well, healthy except for that pesky cancer.  Anyway, after a quick blood draw, I was on my way home, ready for next week’s surgery.  I go back and forth, questioning the wisdom of scheduling surgery for the first week of school, but really, I am so eager to have this finished that it would have been a struggle to wait any longer.

This procedure will be outpatient, and since I’m the first procedure of the morning, I should be able to beat the kids home and maybe even get a nap, too.  The recovery isn’t supposed to be too bad, all of the muscle cutting/rearranging/stretching has already happened, and that’s the painful part.  This is just a swap out– trading the tissue expanders (which have done their job but I hate) out for my “real fake boobs,” the implants that are my final step in the road to normalcy. I’m also having a little bit of liposuction, oh yes, ladies, you can be jealous, for fat grafting– he’ll use that extra fat to strengthen weak skin and give me a more natural appearance overall. I’m sure I’ll have some lifting and exercise restrictions (and I’ll be in all that lovely compression gear) for at least a month or so, but my doctor said I can expect to be pretty much recovered in a week.  Which is good, because as soon as school’s in session, my calendar really starts to fill up, and I’m looking forward to a fun, and healthy, school year!