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.

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…

Just a conventional girl

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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.

Farewell, Google Reader

I’ve been a big fan of Google Reader for years. It has been a great way to keep track of all kinds of blogs– I didn’t have to check daily on all the blogs I enjoyed. Instead, I could scroll through Google Reader see what was new at each of my favorite blogs at a glance. I could read the full article there or quickly skip to the next article. Sadly, Google Reader will be no more as of July 1.

bloglovin

Other bloggers are taking note, and when Ashley mentioned she is using bloglovin‘, I quickly signed up. That was a simple decision, I love nearly every thing she does! It’s easy to transfer all your blogs from Google Reader, and it’s easy to add new blogs. But it only lets you see one picture and read a snippet of each post. To read the whole post, you have to click through to the blog, and let’s face it, that takes extra time. They send a daily digest email, not sure if that’s a plus or not. It’s a lovely format, but I wasn’t 100% sold.

feedlySo today, I saw that Leisl, another blogger I’m just crazy about, is using Feedly, and I thought it was worth looking into. Again, it quickly imported all my blogs from Google Reader, and I really love that it will let me choose if I want just a list of recent posts, a single picture with a little tease, or the full post. Um, full post, please. So far, I haven’t found it quite as easy to add new blogs, though it’s completely manageable, and I can’t find a way to search within my blogs. (It does look like that’s in their future plans, though.) But it does let me group my blogs so that if I can quickly scan my favorites if I don’t have time to look through the new posts on the roughly 150 blogs that I follow.

I’m sure that there a lot of great blog reader services out there, I’d love to know if you’ve found one you like better. But for now, I think I’m sticking with Feedly.

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!

Warrior Spirit

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The day I had my head shaved, it was cool, so I wore this leather jacket. When I donned my soon to be favorite scarf, I realized that I had a bit of a bad-girl biker chick look going on.  And I liked it!  As soon as I put the scarf on, Sally and I knew that we’d need pictures of that look!

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Upon seeing the pictures from that day, one friend commented that I looked like a warrior, ready to head into battle.  I liked that analogy, and somehow “warrior” got attached to this photo in my mind, too.  More than one friend who’s gone through breast cancer has commented that she never wanted to go out without her wig, fearing that she would look weak, sick.  That people would pity her.  I’m sure some people pitied me, but they never treated me like that.  I told these friends that I always felt like it showed strength to put on a scarf, some good lipstick, and a smile.  And now with more hair and little air of “sickness” to me, I think I’ve never looked stronger than in these pictures.  (Many thanks again to Sally for capturing such lasting images of strength.)

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Photography by Sally Brewer Photography

Lipstick: Dubbonet by MAC

In a Bit of a fog…

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This is a blurry look at my life line lately.  My calendar is filled with appointments, school activities, after school events, and a few fun things too.  I’m constantly referring to this just to be sure I haven’t forgotten something.  Notice all the scratch outs?  And then there are the things that are circled so that I won’t over look them.  Lately, I’ve been having a hard time keeping my schedule straight.  Some things I’ve written down wrong, some things are written down right but stuck in my head on the wrong day.  Luckily I haven’t totally missed anything (that I know of!), but it’s been close.

After coming home from the hospital, Clay gave me our copy of Scientific American to check out—the whole issue was on cancer.  The most interesting article was actually on a phenomenon called “chemo fog.”  (They blogged about the same topic here.)  Chemotherapy drugs actually don’t usually cross the blood-brain barrier well, but somehow cognitive deficits are well documented in chemotherapy patients, some for months and years after treatment.  It’s a phenomenon that’s hard to study in people, you can’t really do a trial of cognitive abilities before and after chemo (who isn’t rattled just after finding out they have cancer?) and you can’t withhold chemo from some patients to see if they remember things better than those who got the drugs.  The study they referenced in the article used mice and established memory and concentration problems with chemo treatment.  Interestingly, they found that exercise helped exacerbate** the cognition problems, so I’d hate to see what I’d be like if I hadn’t run all through chemo!

All that is to say that I feel like my calendar is sometimes fuzzy in my mind just like it is on this screen.  Of course, it could be harder to keep straight just because it’s so full!  The end of the school year gets pretty crazy.  But just in case I forget something that’s important to you, please forgive me!  I’m blaming the chemo.

**oops, that’s not the right word! In fact, it’s completely opposite from the right word! I’ll leave it, it illustrates the point well. What I meant to say is that exercise helps combat  the cognitive deficits from chemo.