Beware the internet

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Googling (wigs, not medical info!) while at my first chemo treatment

I know it seems strange, me being here on the internet and all, telling you to stay off the internet.  The internet is a wonderful place– I can quickly find information, do some shopping, converse with old friends.  But there is a danger, too.  Anyone can put anything they want on the internet.  So when it comes to important things, health information, say, I’d steer clear of the internet.  Granted, there will be times when you have a question and can’t ask the doctor, or don’t want to trouble her, or you think it’s not important. First of all, bother your doctor!  Making sure you are healthy, that you understand what you need to do, what you need to look for– that’s her job.  But if you’re tempted to look online before the office opens, there are a few thing you should consider.

  • Consider the source: If I’m Googling for something medical, I’m not even clicking on the link if the address isn’t from a reputable source.  I’m talking something like Mayo Clinic, MD Anderson, or NIH. Since I have a science background, I’ll sometimes read an article from a scientific publication, but those can be a little heavy for people who aren’t accustomed to reading such literature.  Plus, any treatments they are studying are likely to be years away from use in the clinical setting, so they’re not all that applicable to someone looking for timely information.
  • Consider the publication date: Even if it looks like a super reputable source, if it’s five years old, the information isn’t really going to be helpful.  Treatments have changed so much in the past few years, and so have the support meds.  Times change, treatments change, experiences change.
  • Stay off the chat groups and blogs: Yep, I’ll say it again.  When you’ve heard one person’s story, you’ve heard one person’s story. So many people who are compelled to share their stories online have had a bad experience. They seem angry, they seem bitter. I’m not going to tell someone how to feel, but I don’t think that feeling angry makes the situation any better, and if you’re trying to keep a positive attitude, you don’t want to hang out with bitter people.  Garbage in, garbage out.

Just this week I was thinking about something that I’d “looked up” right away after hearing about it, but realized that it was in the pre-internet days, and I wondered how I did it.  It’s hard to imagine needing to find information and not being able to find it almost immediately with a few taps of your fingers.  But when it comes to really important health information, think before you Google.  Check the source, the date, and the attitude. If any of the three seem hinky, move on.  There are plenty of other places to get your information.  Like your doctor.

Summer fun trumps surgery

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It’s summer time, and that means swim lessons, VBS, and fun with friends.  Last week, it meant all three, all before noon.  Busy times!  Turner and I managed to squeeze in some fun with my phone while Emma Clare was in swim lessons.  We thought I should show off my new hairstyle, flipped up in the front.  Big news, huh?

If it weren’t for all the summer fun (and heat and humidity), I could be going in for surgery this week.  It’s been six weeks since I last saw the plastic surgeon, and so my skin has healed enough for me to have my final surgery.  I’m definitely ready– this phase of the reconstruction, while not painful, is certainly uncomfortable.  Plus, I’m so eager just to be finished.  I’ll still have another minor procedure or two after that, but for the most part, that surgery signals the beginning of the end of all of this.  Unfortunately, that surgery also signifies the beginning of four weeks in compression gear, not so friendly for a hot, sticky DC August.  Or trips to the pool with my two new swimmers.

And so I’ll wait until school starts before I head back to the familiar turf of the outpatient surgery center at Virginia Hospital Center.  But I’m not waiting long, because I’m ready.  Ready to be finished with all this.

Lipstick: Fuchsia Flash by Smashbox

The indignity of it all

Yes, they're fake My real ones tried to kill me Tee ShirtsSource

After giving birth to Emma Clare, I decided that the process of pregnancy and childbirth pretty much strips a woman of her dignity.  The sheer volume of people who need to check on something (usually involving stirrups) is crazy.  Then having a small child who knows no boundaries– who feels like a closed bathroom door is an open invitation– surely that would strip away what dignity is left.  Nope, enter the second pregnancy which required taking said toddler to the aforementioned visits involving stirrups.  Gone yet?  Nope, there’s more.  A few more doctor visits and procedures related to the way those kiddos ravaged my body chipped away just a little more dignity.

But breast cancer?  Surely there can be nothing left.  I can’t even begin to count the number of people I’ve had to flash in the course of all my appointments.  Let’s see– there’s a breast surgeon and her nurse– wait two breast surgeons, the oncologist, the nurse practitioner, the two plastic surgeons I saw and their physicians’ assistants, the three or four people involved in the mammograms, the radiologist who did the ultrasound and his nurse, the doctor and nurse in the second biopsy, the two different MRI techs, and I can’t even begin to imagine how many people involved with the surgery and post-surgery care.  And for everyone post-surgery– the nurses, the plastic surgeon, the physical therapist– they all saw my scars.  So did the woman at Nordstrom, Akeelah (love her!), who helped me try on a post-surgical bra while my drains were still in place.  (Kudos to her– she was so gentle and didn’t bat an eye.)  They’ve all been kind, and I can tell that helping me preserve my dignity has been important to them, but there’s only so much they can do about it.  There’s no chance to get all self-conscious.  It’s all survival mode.  Strip down like there’s nothing strange about it and take care of business. Don’t get me wrong, I’m not complaining.  There’s something freeing to be above being embarrassed.  Seriously, if you have a question to ask, I guarantee you’re more embarrassed about it than I am.

Thankfully, a lot of my friends in the survivor community feel pretty much like I do.  We realize that the whole experience stripped away our dignity, but for the most part, we don’t care, and we are thankful that it stripped away our embarrassment, too.  I’m so thankful for those women who will answer all my crazy questions about what I can expect, whether what I’m feeling is normal.  But I’ve met some women who didn’t want their dignity taken, and held on with everything they could.  And I think that’s ok, too.  There are some parts to breast cancer that are mandatory if you hope to survive.  The chemo, the surgery, the radiation– if your doctor says you have to, then you have to.  But how everyone deals with it is different, and some women just don’t want to answer all those questions.  (So ask me, not them!)

My family went through a lot during this whole process, too, but they didn’t have to give up their privacy, their dignity.  You can’t embarrass me, but there are some things that I probably won’t go into detail about here– where it can live online for all posterity–  mostly for their sake.  Already, less than a year from diagnosis, I’ve talked to several newly diagnosed women, sharing my experiences, giving recommendations for doctors, bras, and of course, passing along a lipgloss or two. I’ve found it reassuring to be able to talk to women who are a little ahead of me in this journey, and I consider it a privilege to offer the same reassurance to others.  There’s nothing I won’t share with one of those women, really any woman.  (Guys, well there’s a line.  You know where it is as much as I do, so let’s just not cross it, ok?)  But for the record, and for all posterity, yes, they’re fake.  My real ones tried to kill me.

Hair’s the thing…

pixie cuts
via pinterest

So I’ve been thinking a lot about my hair lately.  I think a lot of people have.  You all ask about it– will I let it grow out? Maybe not, not right now, anyway.  According to a post Ashley did, it will take about 4.9 years for my hair to grow out to its former glory.  (I love that she figured that out!) Somehow, I’m not sure a woman over 40 needs hair that long.  Or at least, not this woman.  But mainly, I like it this way.  And not because it’s easy.  Honestly, yes, it is easier than blowing out all that hair before either straightening it or curling it.  Somehow, I’m betting not many people honestly think that I make fashion choices because they’re easy.  If we’ve talked about my hair and you’ve been one of the very many who’ve commented, “Well, at least it’s easy,” that’s ok, please don’t feel bad.  It is easy, and so many people have said it that I don’t have any idea who has.  But I’m realizing that’s not something I’ll say to anyone with really short hair again– whether she has short hair by choice or necessity, to insinuate the best thing about her hair is ease isn’t the biggest compliment.

That being said, I’ve gotten lots of wonderful compliments.  The best compliments come from complete strangers, and they’re my favorite because I know that these people truly like my hair, they’re not just being nice because they figure at least I’m not bald anymore. My most favorite comment? From a man who works in the cosmetic department at Niemann Marcus.  Enough said.

It’s still weird for me.  I catch my reflection in the mirror or see my shadow on the sidewalk and don’t always recognize myself.  I see myself with long hair in my mind, and yet I’m starting to see myself as I look in Sally’s most recent photos, too.  Like maybe it’s fifty-fifty now, sometimes I think of myself with long hair, sometimes short.  I haven’t quite decided how I’d like my hair to look in 4.9 years.  But for now, I think I’m sticking with short.  It tells a story.  When I see my short hair, I am reminded that I am strong, not only that I’ve gotten past cancer, but that I can feel confident with out the long lovely locks that I once considered a major part of my identity.

Not again…

eyelashes

 

Just did my makeup in preparation for a dinner out with family, and noticed something for the second time.  Have you ever noticed that the first time you see something you don’t love, you try to overlook it– maybe it will go away?  I’m pretty sure I do that.  I seem to remember thinking before when I put on mascara that there was an area of lashes on my left eye that was getting sparse.  I had just been thinking how long my lashes had gotten, that they were better than they ever were pre-chemo.  So the right eye is still pretty great, but there’s that area that’s a little thin on the other side.  I’m still crossing my fingers that it’s completely normal and I’m just being hyper-sensitive, but I’m a little worried that maybe there’s another round to fall out.  Seems unlikely, but the first time they fell out wasn’t until I’d been done with chemo for nearly six weeks, so it’s hard to say.  I’m not looking forward to doing the false eyelashes on a daily basis again, but at least I’ve got some practice, and this pair from Sonia Kashuk did the job without being too spendy.

Here’s hoping I’m just overreacting.  Stay tuned for further updates as events warrant…

Post-surgery Essentials

seat belt cover mastectomy breast cancer

There were a lot of things that I knew I needed to do leading up to my surgery, and I did a pretty good job of getting them taken care of. I came up with a pretty good list of things I thought I’d need at the hospital, and it turned out to be almost perfect. With two glaring omissions.

First of all, percocet is lovely. It really does a good job at knocking out the pain. (And the rest of me, in the process.) But it makes me so itchy. Like all over, can’t make it stop, but only mildly irritating itchy. Not so bad that I wanted to ditch the good drugs, but after a mastectomy, arm motion is pretty limited, so an itchy back is a nightmare. Try though he might, Clay was just too afraid he’d hurt me to scratch hard enough to make the itch go away. I must have mentioned it at some point, so a few days after surgery, a good neighborhood friend showed up at my house with the best gift ever.

back scratcherGlamorous, right? But the simple bamboo back scratcher she picked up at the local hardware store (they have everything!) was exactly what I needed. I wished I’d had it a few days earlier, but it still got loads of use.

The other thing I’d missed I didn’t pick up until a week or so ago. I knew it would probably help, but kept putting it off. After a mastectomy, the last thing you want is a seat belt pressing against your chest. Even though the initial pain is long gone, there’s still a general irritation from the tissue expanders and I hate the way the seat belt feels. Enter: the seat belt cover.

seatbelt coverSeriously, why did I wait so long to get this? I finally picked one up at the automotive store, but for only around six bucks on amazon, it’s ridiculous that I didn’t buy it earlier. It’s not the perfect solution, but for the most part, it lets me drive around with my seat belt where it’s supposed to be instead of me holding it out with my “non-driving” hand.

So while it may be the strangest assortment of gifts ever, I’m thinking that the next friend I know who has a mastectomy will be getting a back scratcher, a seat belt cover, and maybe a can of pringles. Oh, and some lip gloss. Always lip gloss.

Just a conventional girl

run lipstick chemo meds breast cancer northern virginia

For a while, I felt like every other person I spoke with wanted to know when I thought my hair would grow back. I must have answered that question a hundred times. Now I’ve got hair, so that standard question has disappeared. Lately, one question I’m starting to hear more frequently has to do with conventional medicine versus more un-conventional methods of treatment.

I should start with a disclaimer. I’m a scientist. So is my husband. He even did a post-doctoral fellowship with the FDA years ago. We have a pretty healthy respect for “big pharma” and the processes that regulate the development and vetting of drugs. I’ve always worried about herbal and other supplements. While I doubt that they will be as effective as conventional treatment, I don’t worry because I don’t think they couldn’t possibly work. More, I worry that they can work. And they’re not regulated with the same stringency as things that are classified as drugs. Plus, some people feel embarrassed about wanting to use them, or they think their doctor won’t approve of something non-traditional, and so don’t want to tell their doctors. That’s probably my biggest worry—some vitamin and herbal supplements can interact with other drugs, and an oncologist is the best judge of what could put your treatment, or your health, at risk.

I realize it’s easy for me to tout the conventional route. I mean, it worked for me, right? Not only did I make it to my surgery without any hint of remaining tumor, but the chemo didn’t really bother me all that much, either. Would my perspective be different if it hadn’t been so easy and effective? Maybe. I do remember buying a bottle of Evening Primrose Oil to help bring on labor as my due date approached when I was pregnant with Turner. Though I only bought it as the result of an unsolicited suggestion at an OB appointment. (And for the record, it didn’t work.) Desperate times call for desperate measures. I get that.

But still, I have to think that if something considered “non-traditional” was really that effective, the company that makes it would get it into trials so that it could be considered standard of care. That’s how they make money, after all. So for me, I think I’d stick with the traditional, regulated, vetted drugs. At least at first.

Who needs armpits?

 

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When we told the kids that I had cancer, they were of course worried that I would die.  Being scientists, we opted not to tell the kids I had cancer because of some “icky yucky germs” like one children’s book we’d been given suggested. (Seriously?) Instead, I explained to them that cancer cells grow out of control, they don’t stop when they’re supposed to like normal cells.  I told them that people can die from cancer, when the cancer cells are in a part of your body that you need to live and the cancer takes over so that part can’t do its job. They didn’t need to worry, though, I didn’t need my breasts to survive, the doctors could do surgery and take the breast tissue out and I’d be fine, no cancer, and it wouldn’t change the way my body worked.

Last night I was wearing a tank top.  When I stretched, the kids noticed the scar that’s in my armpit from where they sampled my lymph nodes.  They asked about it, and I told them that’s where the doctors checked to make sure that there wasn’t any cancer, and reassured them that there wasn’t.

Turner’s response: “Oh, because you don’t need your armpit.”

I guess he thinks the doctors removed my armpit.

Sweater Weather

sweaters breast cancer hot flashes northern virginiaOk, I know that it’s finally officially summer, so not the normal time to write about sweater weather.  But I was rather attached to this stack of cardigans a few months ago.  In fact, after Christmas, I went out and bought three of four of these, along with a several tank tops to add to my stack, in the same trip.  They were just that important.

Chemo does lots of things to a gal’s body.  Not many people mention it, but one of the lovely side effects is chemically induced menopause.  That’s right, ladies.  Hot flashes.   (And a few other undesirables…)  But the hot flashes nearly drove me nuts.  They started at night, and so I’d just take off the hat I slept in to keep my head warm and stick in in my windowsill.  That way, when the hot flash had passed and I was cold again, I could reach for it and grab it in the dark.  But managing them during the day got a little tricky.  I have so many lovely bulky sweaters.  They didn’t get much wear this winter.  It was a lot of cardigans and blazers for me this winter so that I could shed a layer when I got hot.  I’m sure a bald chick with a scarf on her head and a wearing a tank top with jeans looked totally normal in December.

My oncologist asked about the hot flashes, and I was reluctant to take any more meds, I thought I was managing fine.  But when she asked how I was sleeping, I had to admit that between the hot flashes and whatever else was going on with me, it wasn’t great.  She gave me something to take at bedtime that would control the hot flashes but might make me sleepy, and it made a HUGE difference.  It’s not a drug without side effects, but it really didn’t bother me.  By the time I finished chemo, I was taking a different medication in the morning to keep the daytime hot flashes at bay, and I could actually start wearing something other than the tank top/cardigan combination.  I’m so thankful for the support meds that have been developed– there’s no reason to avoid them and be a martyr.  Quality of life is so important, and they made a huge difference in mine.  So worth it.

Before I had a great handle on them, I was at chemo and was fanning myself through yet another hot flash.  The French girl mentioned that she was usually cold at chemo, she couldn’t believe that I was hot.  I told her it was just a hot flash, that if she wasn’t having them, she probably would be soon, she was just a couple of cycles behind me.  Apparently, she’d missed the part of chemo camp where they’d said to expect hot flashes.  She was actually planning to call her landlord that afternoon because she thought her heater was broken– kicking on super high randomly through the night!

This Too Shall Pass

this too shall pass run lipstick chemo northern virginia
It’s hard to believe that it’s been almost two years since I read Ashley’s post entitled "This Too Shall Pass."  That’s a phrase people use a lot.  In fact, I found myself using it last fall as I realized that my school year would be filled with trips to the doctor, chemo, surgery, recovery.  At the onset of all that, I took a deep breath, and took comfort in the fact that when school finished up for the year, I’d be pretty much finished with all that cancer stuff.  This too shall pass, I’d tell myself.

And it has!  As I prepare to send my littles off to school one last time this year, I realize that I’ve been thinking of that phrase often, but in a completely different way.  More in the way Ashley talked about it.  And it makes me a little misty-eyed.  Through everything this year, we’ve always headed to the bus stop a little earlier than necessary.  The kids play and the moms (and a few dads, too!) drink coffee and chat.  After school each day through the heat, the cold, even a light rain, we stay, usually an hour or more.  The kids have come up with the most elaborate games– first there was the Olympics, the ever popular natural disaster scenarios, fairies, city government, mud puddles, and now warrior cats.  They’re like siblings and sometimes there are fights, but mostly this group, aged two to nine, has great fun together.  For the parents who sit on beach towels in the grass while the kids play, this is valuable time.  Some days, it may be the only adult conversation we get until after the kids are in bed.  And yet, the last few weeks as I’ve watched the kids, I wonder how long it will last.  Emma Clare is the eldest of the brood, and she’s started asking to walk home early or sit with me and read instead of play.  I feel like it’s a bit of a golden time, one that I know I will look back on so fondly.  I always seem to get a little contemplative at this time of year.  But it’s so funny to me that I genuinely believe that I’ll be looking back on this year with a misty-eyed smile.  In spite of the cancer, maybe even because of it, this has been a precious year to me.

But for now, there’s no more looking back.  I have just under four and a half hours to enjoy the kids’ school time before we head to frozen yogurt with the crew and then come back for bus stop night.  And I will enjoy every second of those four and a half hours.  Because I am certain of it, this too shall pass.