Expect the Unexpected | Being the Comforter

I feel like there could be a series here, though I’m not sure what the other posts might be.  Guess you’ll just have to stay tuned…

So I’m sure that most people think that when someone is diagnosed with cancer, they are devastated, an emotional wreck. Now, that is one possibility, and there’s nothing wrong with that.  And we tend to think that as a friend or relative, it’s our job to comfort them.

Tonight, I was watching the Hawaii Five-O episode from last week. Carol Burnett was guest starring, and she had just been diagnosed with a brain tumor. As she told her family of her diagnosis, I was instantly taken back to a year ago. With only a very few exceptions, by the time I told anyone I had cancer, I had cried my tears.  I knew what needed to be done. I had turned off my emotions and I felt like I had as much control of the situation as was earthly possible. I was surprised at how often I found myself, dry-eyed, hugging and comforting my teary-eyed friends.  Seeing it play out on TV reminded me that these friends were taken by surprise by my news.  They hadn’t had the time to cry their tears, and they hadn’t been with me in the doctors’ offices to hear their reassurances. They felt helpless and were looking to me for reassurance, they wanted to hear me say that I’d be ok.  As strange as it felt when I hugged that first crying friend, I quickly realized that it was normal.  It never bothered me to hug and reassure my friends, in fact, it was probably a good exercise for me to hear myself say over and over again that I would be ok.  Because even though I felt like I had things under control most of the time, I could probably use a little reassurance, too.

Dance if You Want To

I’m betting lots of you have seen the video of the woman dancing in the operating room before her mastectomy. In fact, a few of you have sent it to me! Strangely, I didn’t think much about it, except that I’ve never had a surgery where I was awake in the OR.  They’ve always given me some nice meds in the IV so that I don’t last much longer than the time it takes to get out the door of the pre-op room.  Why was she still awake, I wondered?  And weren’t they worried about the sterility of the environment?  Of course, she is an OB at that hospital, so I imagine she might have been given a little leeway to do what she wanted.

I hadn’t thought anymore of it until I ran across this article last week.  “You don’t have to dance at your mastectomy,” the author wrote. And so I started thinking.  Everyone deals with things differently.  Deborah wanted to dance, it was her way of showing her friends, her family, herself, that cancer wouldn’t beat her.  And that’s ok. But the author of this article cautioned that it’s ok if you don’t want to dance, too. It’s ok if you want to be scared or sad or angry.

It almost made me feel a little guilty.  No, I didn’t have a flash mob in the OR when I had a mastectomy.  But I do try to keep a positive attitude, and make light of the whole cancer thing whenever I can.  I don’t put a lot of sad or angry on this blog, though honestly, that’s because I don’t have a lot of sad or angry to share.  But just because I’m not sad or angry doesn’t mean that I’m better than someone who is. It doesn’t make me stronger or braver.  It just makes me me.  So you be you, and dance if you want to.

On Choosing a Plastic Surgeon

Those first two weeks after I was diagnosed with breast cancer, I went to a flurry of appointments.  There were quite a few diagnostic and follow up procedures, in addition to appointments with my surgeon, my new oncologist, and two different plastic surgeons.  At the time, I’m sure I would have downplayed the importance of choosing a plastic surgeon.  Perhaps my surgeon knew that, and that’s why she insisted that I meet with at least two before I settled on one.

I am certain that I made the right decision when I chose my surgeon.  I imagine if you’re searching out a plastic surgeon for botox or a tummy tuck, you’re either prepared to feel a little vain, or it’s just not something that you even worry about. But if you’re like most breast cancer patients, it can be a little awkward to go into a doctor’s office asking lots of questions about how great you’ll look after he does his job.  I mean, you just want to survive the cancer, right? It shouldn’t matter if you come out on the other side with a great rack.

This is just one place I think my surgeon was great.  He made it very clear from the beginning that he does lots reconstructive surgeries (a must!) and wanted to be sure that I thought I looked good, period, not just good enough  for having had breast cancer.  He showed me pictures of women who had made all different choices– you might be surprised all the choices someone in this position actually has.  Bilateral mastectomy, or single with a lift on the healthy side to maintain symmetry?  Nipple sparing, nipple reconstruction, 3d tattoo? Stay the same size or go bigger?  He was at the same time realistic and optimistic about my outcome.  Not only did he want me to be happy with how I looked, but he wanted to be sure that  he  was happy– that I looked natural and not like some over-done Hollywood B-lister.  Since there is no fat or breast tissue left after a mastectomy, implants alone can end up looking pretty fake, so he uses fat grafting to fill in around the implant.  This means that during the surgery I had liposuction (not enough to really make a difference, though, don’t get excited) and he injected that fat around the implant, giving a much more natural look. He was also very thoughtful about the incisions, making sure that my scars won’t be visible should I wear even a pretty skimpy bikini top.

Being able to talk easily and honestly is so important, this is a doctor who I saw several times a month.  He not only made sure that he answered my questions, but always remembered the name of my husband or what ever friend came along with me, and called them by name when asking if they had any questions. We talked about lots, and as we neared the end of my expansion, I remember him asking if I’d tried on some of my dresses to see if I liked the way they looked, or if we needed to expand a little more.  He managed to find a way to let me tell him what I wanted without forcing me to outright ask for bigger boobs.  And after the final surgery, he honestly wanted to know what I thought, to be sure I happy with the size and symmetry.

Sure, these aren’t the life and death decisions that the oncologist makes.  But when you’re considering a doctor with whom you have to be painfully honest in some painfully vulnerable situations, and who is in control of how you feel about yourself every time you look into the mirror, it’s worth taking the time to make a good decision.

You Asked: Lymphedema and Cording

So I’m taking a small liberty here, no one asked about cording, but it feels like it’s worth mentioning along with my comments on lymphedema.  To determine the spread of breast cancer, breast surgeons remove one or more lymph nodes.  They act as filters, so they are likely the first place cancer cells would be trapped if they’d escaped the breast.  Unfortunately, taking them out to check for cancer, while important, can cause not so great side effects.  Lymphedema– the swelling of fingers and arms in breast cancer– occurs when the remaining lymph nodes can’t keep up and fluid builds up.  That’s why some women wear a compression sleeve after a mastectomy. Because some of the lymph nodes are removed, the lymphatic vessels that service those nodes can harden from disuse and cause problems as well. (They look like tendons that appeared out of nowhere, frequently under the arm and down the arm to the wrist, but can also run from under the arm and down through the chest.)

Before I had my mastectomy, I had an hour or so consult with a physical therapist.  (As an aside, I would insist on having this kind of appointment a week or so before surgery– invaluable.) Michelle is a lymphedema specialist, and she made sure I understand exactly what I should and should not do after surgery.  More than that, she made sure I knew what to expect and what would signal a problem with lymphedema.  She emphasized that it would be far easier to deal with lymphedema early, before it became a significant issue.  Though I have yet to meet her, I also have several friends who see a massage therapist at the Teal Center at the hospital who focuses her massage on the axilla (that’s a fancy word for armpit– I’m flashing back to Fancy Nancy!) to help encourage lymph drainage.

Thankfully, I only had a few small, superficial nodes removed at surgery, so I am not likely to struggle with lymphedema. I did experience some minor cording, and Michelle used massage and stretching to break the cord, which you could hear pop as she broke them down.  Creepy.  On the advice of a friend, I scheduled my appointments with her just before I went for an expansion with the plastic surgeon, and I think the relaxing of that area really helped lessen the pain of the expansion.

Lymphedema and cording are real issues, though as current standard practice does not dictate that a surgeon remove all  nodes, they are not as prevalent now as they once were.  Still, the take home message is that there are physical therapists who are specifically trained to combat these problems.  Michelle did a great job, and she was really nice, too.  A little PT would be so much better than dealing with swelling and the pain from cording.

Running Towards “Normal”

Sally saw a post last week  and the photos alone gave her an idea.  So she gave me my very own photo challenge.  She suggested I bring along my camera on my first run after this last surgery.  She thought maybe I could document my run as I “get back to normal.” I love that she quickly added. “Ha.  Like normal is a thing.”

run lipstick chemo breast cancer

I agreed it would be a fun post, and so after lacing up my running shoes, I snapped a photo on the brick stairs at my front door, and I continued to snap away as we ran along the Potomac.

run lipstick chemo breast cancer

run lipstick chemo breast caner

run lipstick chemo breast caner

run lipstick chemo breast caner

run lipstick chemo breast caner

As I haven’t been on a run at all in six weeks, and I was only running half heartedly at best before that, I welcomed any stop to take photos.  So did this little lady, who was eager to pop out of the stroller at any opportunity.

run lipstick chemo breast cancerAnd of course, no fun run with Sally would be complete without the requisite stop at Starbucks.  So glad to be running and getting back to normal.  Like normal is even a thing.

Update | One Week and Counting

Because every post needs a photo...
Because every post needs a photo, not because this has anything to do with the post…

Three weeks since surgery.  Which means one more week.  One more week until I can enjoy a really good stretch. One more week of the sports bra.  One more week of the compression bike shorts.  (Can’t bear to call it a girdle.  Even though the website does.  Whatever.)  The bruising is gone, almost all of the glue sealing the incisions is gone, and there’s very little discomfort– only a little tenderness in one spot if I really apply pressure.  I’ll have an appointment just after that week is up and hope to get an all clear at that point. Physically, I feel pretty normal.  I just can’t wait until I can feel normal emotionally, too.

Unloading Some Baggage | Bloomers’ Bra Drive

bra drive

While I’ve been quite the fan of the “unmentionables counter” at Nordstrom for ages, I’ve been making a more concentrated effort to shop local lately.  I’d often seen Bloomers, but was impressed enough to stop in after reading their philosophy– they describe themselves as the “antithesis of the intimidating lingerie shop” and strive to make sure every woman looks her best in any outfit and has comfortable loungewear that looks lovely and feminine, but is young son-appropriate.  But when I saw the announcement for their upcoming Bra Drive event, I was thrilled! They collect gently used bras to donate to Bra Recyclers who give them to women in need worldwide.  I happen to have a bag of bras that won’t work for me anymore, but I didn’t quite know what to do with them.  I even wonder if I was still hanging on to them out of some misplaced emotional attachment.  Either way, when I’m finally free of this sports bra (incidentally just a week or so before the bra drive!) I’m going to need something different.  I happened to be in Shirlington today and stopped in that Bloomers shop and the woman there was so kind and helpful.  She showed me a couple of different options that I can try when I’m allowed out of the sports bra and I literally can’t wait!  They carry the braGG, designed for reconstructed breasts by two sisters who underwent prophylactic mastectomies because they carry a BRCA mutation.  It’s not the prettiest bra I’ve ever seen, but it’s good to know that the option is available, and I’m sure I’ll at least try one on. Personally, I’m hoping that perhaps one of the Eberjey bras she showed me will work– they’re pretty and unlike most underwire free bras (which I hear may be more comfortable after all these surgeries) they actually look like bras.  At any rate, I’m looking forward to getting rid of some baggage and ditching those old bras at Bloomers on October 12.  But more than that, I’m looking forward to finding something new to wear as I start a new, healthy chapter in my life.

This Little Stool

this little stool

My brother had a little stool like this one, complete with the adorable little rhyme.  When Emma Clare was little, I didn’t have a stool in the kitchen for her, so she frequently turned her toy microwave on its end to stand on.  My friend, Natalie, was over one day and noticed it, remarking, “That stool looks just like a little microwave.”  Um. Yes, it is a toy microwave. Not the most study of all stools…  A week or two later, she showed up at my house with a lovely wooden stool hand made by her father.  I was skeptical, but she said that because of the way it was made, it was impossible to tip over.  But I give her (and her dad!) credit, with two of the most monkey-like kiddos, in the past probably seven or eight years, it never has turned over!

It is stained the same color as the furniture in our living room and tucks nicely under some nesting tables at the end of the couch, so it’s gone back and forth from the kitchen to the living room for years.  But lately, it’s been living permanently in the kitchen.

After hearing one of those “It’s never happened to one of my patients, knock on wood…” horror stories from my plastic surgeon, I’m being super careful about not reaching my elbows above my shoulders.  The problem is, reaching doesn’t hurt at all, which makes it hard to remember to be good.  Having that little stool to pull around the kitchen with my foot makes it so much easier to have some independence in the kitchen without breaking any rules. I always thought that stool was a thoughtful gift.  But now that it gives me some much needed independence, I really love it.  Thanks, Natalie!

Making Progress

champion sports bra

Today’s a big day.  My last day in the compression bra.  I’ve been thinking a lot about my compression bra ordeal lately– the ones they sent home from the hospital were so bad, I’m going to talk to my surgeon about some better options.  Not that I’ll ever have to wear one again (and I am SO glad!), but there has to be a better option.  And even the one from Nordstrom that I’ve been washing each night after dinner so that I can wear it again the next morning has some issues.  To really be truly compressive enough, it can’t have any shape, and this one has just a little bit of shape built in, so the only reason it works for me is that it’s a size or two smaller than I currently measure.

Regardless, I’ll be moving to something more like the picture above in a few hours.  I was going in search of my favorite sports bra, and am devastated that it is no longer on the Champion website.  (It’s a good thing I started hoarding them a couple of years ago!) It’s a high support sports bra, which is good for my current needs.  But they key is that it’s more of an old-school sports bra– completely flat.  No fancy ruching, no molded cups, no underwire. To get good post-surgery compression (and the OK from my surgeon), it has to be completely flat. It’s hard to be sure online, but this one looks like a good alternative to my favorite (now discontinued) sports bra.  But probably the best thing about moving to this stage of recovery? Only two more weeks until I can go back to wearing whatever I want!

That First Shower

Not my shower.  A girl an dream, though... (source)
Not my shower. A girl can dream, though… (source)

After I’ve been sick, I always know I’m better when I feel like taking a shower.  And while I’m feeling marginally better when I hop into the shower, I always feel much better when I get out.  There is something so wonderful about that first shower.

After surgery, it’s much the same. I’m not saying I’ve never skipped a day (or two, even!), but few things make me want a shower so desperately as someone telling me I can’t have one. Needless to say, last Sunday, I was counting down the minutes until I got to the 48 hours post-surgery mark so that I could get into the shower.  But the first shower after surgery isn’t quite as wonderful as the one after a sinus infection.

First of all, with my crazy independent streak, even after my mastectomy, I did the whole shower by myself, drains and all.  But I had to have Clay on call, standing by should I need help or have any problems.  It was slow going, but I managed.  The really tough part of the first shower is that it’s also the first look.  It’s the first time that you get to see the scars, the bruises…  After my mastectomy, all that was kind of tough.  I didn’t really know what to expect, but I have to say that I found the drains more upsetting that the scars that time around.  This time, he used the same incision site, so no new scars, but where I had no bruising at all the last time, this time I looked pretty beat up.  We’re talking yellow, green, purple.  Clay said he could even see finger prints.  Thankfully, that’s all fading pretty nicely in just a week, and my plastic surgeon suggested that I take Arnica (a natural product with virtually no side effects) to help the bruising heal even more quickly.  I expected to see some pretty significant bruising on my thighs from the liposuction there, but there are only two teeny little spots of bruising there to go along with all the marker circles he drew.  The marker that he uses pre-surgery is pretty tough stuff and he didn’t scrub it off my legs, so I’m still waiting for that to fade (even alcohol won’t scrub it off).

This go-round, I was a lot better in the shower. I was still a little taken aback, though.  I struggled with how to explain this surgery to the kids– they knew that the first surgery took out all of the cancer.  I just explained that it was the last step to make sure I was all “back to normal.” Whatever that is.  Finishing up after that first shower, getting assistance back into my compression garb (my pecs were still too sore to pull the hooks closed), I struggled with whether I looked normal. I’d kind of forgotten what normal looked like.  And of course, I couldn’t expect to look completely normal– crazy bruising and swelling aren’t normal. This was the last step in the process, though, and if I wasn’t happy, I’d have a long time to be not happy about it.  I worried if I’d made the right decision.  And of course, I had.  I just needed a little time to work it out.  Somehow I just wasn’t expecting it when I got ready to head into that first shower.