Genetic Non-discrimination Act, a Primer

The Genetic Information Nondiscrimination Act (or, GINA) is set to go into effect next week for employers, according to this NYTimes article. GINA is a godsend for us BRCA-ers, because it means employers can’t say “Well… you might get breast cancer at 40 and not be able to work with us, so buh-bye!” The article is a great primer on provisions set forth in GINA, so if you’re not sure what it entails, I’d suggest a perusal.

I’m not putting down the article, but every time I read something like this I have two reactions:

1) Frustration. I know they have to, for space, but these articles totally boil down genetic testing to one or two nondescript sentences, which capture nothing about the real reason why people get tested or why genetic testing can be a great benefit to someone’s life and health. Then, in the comments, there are inevitably people who say, “Genetic testing is dumb. Why would anyone do it?” Grrr.

2) Worry. If the world turns into Gattaca, I’m going to be like Ethan Hawke. All of us BRCA-ers are going to be like Ethan Hawke. We’ll be at a disadvantage. There is something in our genes that makes us “less-than”, in a genetic health sense. I can’t say that doesn’t scare me a little. What if someday our society DOES discriminate based on genes? That day may not be far off. And I may be considered unfit, even though I’m completely healthy otherwise and I don’t often engage in risky behaviors. Again, grrr.

Does anyone else have these reactions?

Annoyed at BRCA and the Job Market

It’s the economy, stupid! Well… now for me… it’s also the mutated genes. I am currently in the middle of a hard decision, and BRCA is NOT helping.

My boyfriend has accepted a transfer to his company’s DC office, but we currently live in Philadelphia. I’m happy for him, and want to follow him, but I’m not sure whether I should quit my job, move with him, and look for a job in DC, or stay here, look for jobs, and not move until I secure employment there. The first option seems most practical to me, as it would be so much easier to look for jobs full-time and actually be in the city where i’ll be networking and interviewing (not to mention we now share an apartment and only have one of everything). But… I’m worried about being out of work for a while. And consequently I am worried about not having affordable health insurance for a while.

I need an MRI. I need a breast doctor. I need a gynecologist. I need peace of mind that if I find a lump in my breast, I can call up a doctor and get an appointment without paying an arm and a leg (or a boob). If I didn’t have BRCA, I wouldn’t really care about going without health insurance for 5 to 6 months. But I don’t have that luxury. I’d be playing with fire, and I don’t want to get burnt.

Le sigh. BRCA cranks up the inconvenience level a little bit in this whole situation. Of course the nearly 10% unemployment rate doesn’t help, either. Anyone want to give me a job in DC?

Dreaming of a Pink October

If it hasn’t already been shoved down your throat, I’d like to remind you that it’s Breast Cancer Awareness Month. Don’t get me wrong, I think it’s great that a whole month is dedicated to breast issues and I am glad that all the publicity is forcing people to think about an issue they may not think about otherwise, but I do wonder if it’s a little too commercialized. Kind of like Christmas.

I read this Newsweek article today, about that very idea: Seeing Red in Pink Products. I don’t necessarily agree with the whole argument, especially the part about companies whose products may cause breast cancer not being allowed to promote breast cancer research. That’s like saying paper companies shouldn’t be anti-cuts because their product may give you paper cuts. It’s kind of silly.

But the whole part about “pink products” simply being a marketing ploy I do agree with. Who knows whether any money is really going to research? Sure if it’s something I was already going to buy, I’d go ahead and get it. But if I see something in a store that I didn’t need, I wouldn’t buy it just because it was benefiting breast cancer research. That’s just me.

Anyone else have any thoughts? I don’t want to seem like I’m attaching BCAM. I’m really not. And it does seem that I notice it more this year because of my little… predicament… and by predicament I mean BRCA. Can we have a whole month dedicated to us? Kthx.

Welcome to Waiting

I had my second annual check up with my oncologist last week. My doctor is great, very involved in BRCA research and a renowned expert in genetic breast cancer issues. Still, the appointment left me feeling dissappointed. First off, it was rushed. Basically I took my shirt off, we talked while she felt me up, she printed out a few things and that was it. No more than 5 or 10 minutes. I’m sure this is a standard occurrence with doctors in this day and age, but come on. I had to smell my armpits to make sure my BO wasn’t so bad that it made her want to spend as little time with me as possible. That’s sure what it felt like.

Aside from that, nothing really happened. I’m not sure what I expected. Maybe, “Congratulations, Cara. You no longer have a BRCA 1 mutation!” or “Guess what? They’ve found a cure for breast cancer!” or maybe even a little self-esteem booster, “Cara, I’m really glad you came in today. I can see you take this whole BRCA thing seriously.”

But instead, I just got felt up. I also asked if anything had happened in the past year on the BRCA front that would affect me. (A miracle drug! A cure! A new study that might get me free doctor visits!) Nothing. A prostate cancer study. For men. In their forties. That’s it. And I left with a piece of paper telling me my first MRI is scheduled for next summer, preferably 7-10 days into my menstrual cycle.

Sheesh. I guess, though, that’s what taking preventative measures for BRCA means… waiting. For good or bad news.

The Healthcare Debate and My BRCA

Nothing that I’ve seen or read so far about the healthcare debate has made any ties to BRCA or breast cancer, but I would be remiss if I didn’t bring the topic up as BRCA is a healthcare issue. I first have to say that I don’t have a strong opinion either way. I know I said before that universal healthcare is ideal, but I’m not sure how it would work or how we would pay for it. As someone who has a job with full health benefits, I don’t personally feel a NEED for universal healthcare, but that’s quite a selfish view and who knows in this economy when my situation will change? One thing BRCA does for me is make it really really necessary that I have health insurance. I mean… it’s necessary for everyone, but I’ll admit that I rode without it for a little while after I graduated, and if I didn’t have BRCA I would probably do it again if I needed to. But the BRCA makes that an impossible option.

Another thing I keep thinking about is these side arguments I hear people having over the “survival of the fittest” questions and why we as a nation are so unhealthy. I’ve always been a bit cruel in thinking that people who live dangerous/unhealthy lifestyles deserve the health problems that they get. You KNOW smoking is bad for you. You KNOW eating fast food for every meal will contribute to heart disease and diabetes. So why do it? But then I think of this argument and how it relates to BRCA and I think – if we lived in a society where everyone believed in “survival of the fittest”, would my bad genes make me unfit? Would I be written off and denied care because I’m likely to just die of breast cancer anyway? When I think about these things, “survival of the fittest” seems to blow up in my face.

I know that having a genetic condition and choosing to eat unhealthy foods are two different things, but what if the person deciding who was fit and who wasn’t didn’t realize that?

Anyway, I know this is all a bunch of rambling with no real thesis, but I wonder if other people have thoughts about how the healthcare issue relates to us as pre-vivors? Please share!

**EDIT: Ok after writing my entry I also found this entry on the Goodbye to Boobs blog. She makes a much more coherent point than I do, and provides a link to some Komen information on the topic. Kudos!

A tribute to Mr. Kennedy

I was never a political person up until about a year ago, so I have to admit that I am not well-versed in all of Edward M. Kennedy’s work. But what I glean from everything I read is that he was a staunch supporter of the war on cancer and an advocate of improving our healthcare system. To me, those are both admirable causes.

Though he didn’t die of breast cancer (rather a much more aggressive brain tumor), he still represents someone for whom the war on cancer has not gone far enough. And all of us who have been touched by cancer, no matter what kind, should heed his message and appreciate the work that he did. Hopefully, his death will trigger a positive reaction in the cancer-fighting community, as well as Congress where the healthcare bill is unfortunately creating rifts and becoming something far from what it was intended to be (or what it needs to be).

I’m sorry to those of you who may not agree with my views on the healthcare thing, and perhaps I shouldn’t be political, but I think Kennedy brings to light something we can all agree on – if more can be done to prevent and cure cancer, it should be done.

I leave you with this NYTimes article about Mr. Kennedy, from today’s paper. It’s an informative piece on hope and reality in the fight against cancer.

The Touch, The Feel of Boobies

::Cue cheesy porno music:: So last night I was lying in bed topless, rubbing my chest, and…

Ok, just kidding about the porno music. But seriously, I was feeling my boobs last night in bed, because I try and do it at least once a week, and I thought to myself, “What am I really feeling for?” There are so many websites out there (here’s a good example) that tell you what to feel/look for – puckering, lumps, hard nodules, etc. But what exactly does that all mean until you’ve felt it? I mean, what looks like puckering to one person may not look like puckering to another, and what does puckering even look like? All that comes to mind when I hear that is someone going in for a kiss.

I remember when I went to get my blood drawn for the BRCA test, they had a fake boob there that you could actually touch, and it had examples of what tumors felt like. It was GREAT because it gave a concrete, touch-based idea of what I was looking for. I wish I had one of those at home to be perfectly honest. No amount of internet description can beat something that you can actually touch for accuracy.

I’m not going to try and tell everyone what they’re supposed to be looking for, since that’s already been done. But I will say – ask your doctor to go through the clinical breast exam with you. Have her (or him) tell you what is normal breast tissue, and give a thorough description of what you should be concerned about. I think that’s really the best way to do self-breast exams.

Also, I just want to note that self-breast exams are a great way to get significant others involved in the cancer screening.  I know my BF likes them, probably more than I do

Other resources:
American Cancer Society

WebMD
YouTube (Seriously, search breast exam or partner self breast exam and a lot comes up. Visual aids are always great so I highly recommend doing this!)

Lurlene McDaniel – crying blast from the past

So this weekend I was home visiting my parents and brother, who came in to visit from LA. As I hate to throw away books (who knows when you’ll want to read them again, or give them away to some other little girls to help them get through their awkward years?), my bookshelf in my old bedroom is quite crowded.

So as I was looking through my books, reliving my middle/high school years, I found some gems by Lurlene McDaniel – the Dawn Rochelle series. These books are absolute tear jerkers about a girl who is diagnosed with Leukemia and is told she only has 6 months to live (hence the unecessarily heart-wrenching title of one book, Six Months to Live). Dawn attends a cancer camp, where she meets many other people suffering from Leukemia, including a beautiful blonde-haired girl named Sandy. Eventually, Sandy dies (cue tears), and there’s a lot in the book about Sandy’s battle with cancer and how she loses her beautiful hair.

Well… seriously, Lurlene. Did I need this kind of depression in my childhood? Apparently I did because I couldn’t stop reading this series, and crying and crying and crying. I guess McDaniel had a good reason for writing – her son was diagnosed with juvenile diabetes at age 3 and she found writing to be “therapeutic” (per her website) – but now it just seems barbaric that I would force myself through these books. But as Lurlene’s website also says, “Everyone enjoys a good cry.”

Now I can’t help but wonder if reading those books helped to desensitize me a bit to my own cancer problems. I guess it’s possible – I mean it would have been much harder to deal with thoughts of cancer if I had never dealt with it before. Maybe it’s good to expose children to these sad situations early in life – kind of like you train a dog when it’s a puppy to deal with people grabbing at it and puling its tail.

I must have been a weird child. When everyone else was reading Goosebumps, I was reading about girls dying of cancer.

Fighting Cancer, One Enemy at a Time

I remember a while ago having a conversation with a college friend… you know, one of those academic-type paranoid conspiracy theorists… about whether the government had already found a cure for cancer, but they weren’t sharing it because it wouldn’t be profitable for drug companies if everyone with cancer could be cured. I don’t actually believe that… I don’t think… but I guess it does seem like it could be true.

Whether it is or isn’t true, one thing is for certain: there is a lot of cancer research that goes on, and a lot of different theories on how a cure for cancer would work. This article from yesterday’s NYTimes (written by James Watson, I believe of Watson & Crick DNA helix fame) lays out a pretty good plan of attack – getting rid of cancer using our knowledge of cancer’s genetic and chemical makeup. He advocates going “all out” against cancer now, rather than waiting until we have a bigger arsenal against it. Blast cancer now! Don’t wait!

Or at least come up with a cure before I get it. Please?

In other news, I scheduled my yearly appointment with the genetic breast cancer expert at UPenn Hospital, so I’m looking forward to hearing how her thoughts have changed in the past year and if she has any new ideas for preventive care. I was a little disappointed that it took me a half hour of waiting on the phone to learn that the next available appointment isn’t for another month and half… but I sucked it up and scheduled it anyway.

The Cancer Connection

This weekend, the boyfriend and I went to upstate New York to visit his 88-year-old grandfather. On Sunday morning, we were taking a tour of the tiny town where my boyfriend’s mom grew up, and my boyfriend’s grandfather was pointing out all of his doctor’s offices. When we passed the hospital, he pointed that out as well, saying that’s where he spent a lot of time getting chemo for his prostate cancer, which he survived and has been free of for a while now.

Sitting in the back seat, I thought to myself, ‘That’s something we have in common, cancer.’ Of course, in reality, the similarities in our situations are few. But everytime I hear someone who has gone through chemo, I feel a small jolt of curiousity, compassion, and fear. I would have liked to ask him what chemo was like. Did it hurt? Did he lose his appetite? Was he forever changed? But I didn’t ask anything, just kept quiet and let the moment pass.

The reality of age is that you’ll have to deal with all of those medical problems, and you see your life as a map of doctor’s offices and pills and hospital visits. I shouldn’t have to think about those things at my age, but when I’m confronted with a conversation about cancer or chemo or anything like that, my thoughts sour. Everytime that hapens, I move a little closer to wanting surgery, wanting this plague of worry gone from my life. It goes away eventually, but sometimes in quiet moments, I find myself wondering why I’m waiting… what i’m waiting for.

So many people in this world have had cancer, are suffering through it currently, or will get it in their lifetimes. They’re all connected by the cancer connection – an unfortunate cord. I have to accept that I am now part of that network, whether I like it or not.