Archive | March, 2011

The Genetic Method

31 Mar

Little shout out to The Band with my title there…

Remember how I got tested to find out if my cancer was the result of a genetic mutation? Well, I got my results back and the news is good – no mutations in my BRCA1 or BRCA2 genes. The genetic counselor and I expected as much after going through my family tree (we made a pedigree med students!!). I have essentially no family history that would indicate a genetic mutation, but we’d figured we’d better do the test, just to be sure. For those who care, I had the BRACAnalysis test, including 5-site rearrangement panel, but did not have the BRACAnalysis Rearrangement Test (BART). We didn’t do the BART because it was so unlikely that I had the mutation in the first place, additional tests weren’t necessary.

A few facts about BRCA1 and BRCA2. These are tumor suppressor genes. See, there’s two ways to cause out-of-control cell proliferation; you can jam down the accelerator of cell division, or you can cut the brakes. The BRCAs are brakes and mine are still intact. A woman who inherits a harmful mutation in one of these genes is 5 times more likely to develop breast cancer than a woman without said mutation. 1.4% of women in the general population will be diagnosed with ovarian cancer in their lifetime as opposed to the 15 – 40% of women with a BRCA mutation who will be. BRCA mutation account for 5 – 10% of breast cancers and 10 – 15% of ovarian cancers in white woman in the United States. BRCA mutations are more common among certain populations, for example among people of Ashkenazi Jewish descent. There are other mutations that are sometimes responsible for breast/ovarian cancers, but the BRCA mutation are most often the culprit.

So, I’m lucky I don’t have any mutations in these genes. Things would be much more complicated had my test come back positive. Genetic testing is a slippery subject. There’s a lot of people who choose not to be tested and I can really see why. There also seems to be a burgeoning push for full genome sequencing for everyone. Think about it. Do you want to know? Do you really want to be burdened with such certain uncertainty? The increased, potentially unnecessary, medical intervention that may accompany the results of these tests? Would you tell your family if your genome revealed some sleeping demon? Should your doctor tell your family? What if you felt like a ticking time bomb for your whole life…and nothing ever happened? Our knowledge about what the results of these tests mean is changing every day. Every HOUR!

Privacy measures around genetic testing are also still evolving. Do you want your insurance company to know that you tested positive for some genetic mutation that may or may not increase your risk for some potential condition in the unknown future? Insurance companies make their money by betting that you’ll pay them more money then they’ll spend on you – if the odds are dramatically changed by the results of one of these tests should that person be required to pay more since it’s X amount more likely they’ll be effected by something? I’ll bet I can guess what the insurance companies might say. We do have the Genetic Information Nondiscrimination Act (GINA) which offers some protection. GINA “generally will prohibit discrimination in health coverage and employment on the basis of genetic information.” It also “generally prohibits health insurers or health plan administrators from requesting or requiring genetic information of an individual or the individual’s family members, or using it for decisions regarding coverage, rates, or preexisting conditions. The law also prohibits most employers from using genetic information for hiring, firing, or promotion decisions, and for any decisions regarding terms of employment.” So that sounds good. BUT. This does not apply to life insurance, disability insurance or long-term care insurance. Nor does it apply to companies with fewer than 15 employees. And lastly, GINA doesn’t “prohibit health insurers or health plan administrators from obtaining and using genetic test results in making health insurance payment determinations.” And I mean, payment is the important part of this whole arrangement, right?

So, say you want to get the test, but don’t want your insurance company involved. You decide to pay out of pocket for it. The testing I had done costs over $1000. And there is only ONE lab in the country that does it. The test, a very simple test any lab could do, has been patented by Myriad Genetic Laboratories. They are the ONLY ones who can do it. For now. This patent has been challenged and invalidated, but Myriad is currently appealing the decision.  Myriad has also done some controversial direct to consumer marketing for their genetic testing.

If my test had come back positive I would have had a few options. I could have opted to have heightened screening for breast cancer. I would have started getting frequent mammograms and routine MRIs basically now, very young. This doesn’t sound so bad, but these screening procedure do have false positives relatively often and that means more, serious, unnecessary and frightening medical interventions. Some women who have a positive BRCA test opt to have a full, prophylactic mastectomy. This is considered a more radical move, but hey, total peace of mind. I’m pretty sure that I would have opted for increased screening, I like my boobs, I’d miss ’em like hell, but it’s hard to say.

Alright. End rant. I have yet to fully make up my mind about genetic screening and testing. Clearly I chose to have the test and am glad I did, but the issue is very complicated and always changing. It’s also an issue we all will have to think about, especially any future healthcare providers. There’s lots of questions to ask ourselves about what we want the healthcare we receive and give to be about.

In other news. I’m feeling good. Stronger and stronger. My eyebrows fell ALL the way out, which always makes me think of this guy:

I remember watching Pink Floyd’s The Wall on like, VH1 Movies That Rock or something when I was a kid and the image of this dude messily shaving off his eyebrows really stuck with me. Ick. My eyebrows are now growing back, give ’em a few weeks and I think we’ll be back at capacity.

I also can’t get enough of the Born This Way video these days.

Love it. My favorite part is the zombie/skeletons.

But, I have to say, Gaga, those severe bangs always make me think of that lady from Say Yes to the Dress.

No? Is it just me?

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Shameless Plug

28 Mar

I just finished my taxes (yay!) and the whole arduous process got me thinking about the ol’ dollars and cents.  Specifically, donating some of them.  My dear friend Erika:

here she is

is running the Boston Marathon to raise money for the Dana-Farber Cancer Institute.  Girl has been training in the worst winter I can remember for quite some time and is going to rock come Marathon Monday.  So.  Give her some monies!

The money goes to the Cluadia Adams Barr Program in Innovative Basic Cancer Research which supports a number of different research projects that all work towards finding new ways to kick cancer’s ass.  Nobody likes cancer.  And, it turns out that cancer is not only good at gobbling up people’s bodies, it’s also good at gobbling up research money.  The Dana is doing some good work, and hey, it’s a tax deduction, right?

Erika has been working so hard to raise money, which may be even harder then training for the actual marathon.  Sometimes asking people to hand over their money can be hard.  This is not one of those times.  I have no problem asking people to donate money to cancer research.  Cancer sucks and without research like the good folks at the Dana are doing I’d personally be shit out of luck.

Chris and I will be there in Boston when Erika runs, so I’ll try to get some awesome mile 21 agony action shots to post so you can see your dollars at work.  Any amount you can give is great.  Again, here’s the link.

Thanks, guys.

http://www.rundfmc.org/faf/donorReg/donorPledge.asp?ievent=425293&supid=294152961

Priscilla

22 Mar

Last week, my mom, sister and I went down to the city and saw:

Oh yeah.  It was fabulous.

There was some of this:

And this:

And more like this:

 

Now.  Confession.  This is so embarrassing that I didn’t even tell my sister and my mom at the time.  In the show, they sing “I Will Survive”, right?  And it’s like a huge, all cast number and everyone looks fabulous and is dancing like they mean it and it’s wonderful, ok?  You have the image.  Now, maybe it was the two glasses of Pinot Grigio at lunch or the stress from the new puppy, but at this point in the show I start to get a little choked up.  Yes, this campy rendition of a 1978 disco hit made me get all EMOTIONAL.  I guess having such a great time, with people I love so much while watching people just get down with their bad selves really made me realize, that, well, I’m going to survive and I am so excited about that.  Totally silly, but totally true.

Now, I was never REALLY dying…I never saw my life flash before my eyes and no one would ever describe me as “terminal”….but, well, I think maybe Royal Tenenbaum after his faux “pretty bad case of the cancer” said it best:

ROYAL: Richie, this illness, this closeness to death…it’s had a profound affect on me. I feel like a different person, I really do.

RICHIE: Dad, you were never dying.

ROYAL: …but I’m gonna live.

This continues to hit me at strange moments, not just during musicals about drag queens.  It happens early in the morning, late at night, while walking the dogs, while reading a good book, while sitting on the porch watching the super perigee moon rise, while walking up the steps in Grand Central Station, while cooking and talking and dancing with Chris, while laughing and gossiping with my family, and so on.  I feel a new sense of my own fragility, of life’s fragility, but in a way that’s the place where these mini bursts of celebration come from.  I’m alive!  And I could not be!  And it’s not going to last forever! Let’s enjoy!

On that note, let’s have some soul, shall we?

 

 

 

Patsy Cline Kerrigan-Wenz

17 Mar

We have a new family member!

Yup.  That sweet face of a monster is our newest addition.

We adopted Patsy from Arkansas and she’s some kind of Australian Cattle Dog mix.  She’s about 15 weeks old and a total butthead.  But we love her.

straight offa da' truck

She’s named after this lady: She does sort of take after her namesake as far as I can tell.  Stubborn, sassy and independent.  Maybe she’ll learn to sing, but I’d settle for learning to sit.

Having a puppy is currently a lot like having a small child.  She is mobile, but has little to no brain.  I have to watch her every second otherwise she will definitely find some kind of trouble whether it is chewing on the rug/chair/remote/plant stand/plant or peeing somewhere totally inappropriate.  I also wake up at least twice in the middle of the night to take her out to pee because she’s crying.  When she’s not in trouble, she’s usually sleeping.  If she doesn’t get enough sleep, a lot like a kid, she becomes totally ornery and obsessed with doing exactly the opposite of what you want her to do.  Aside from all that, she’s a great pup and is going to be a super dog when she grows up.  She’s also incredibly cute and soft and wiggly and loves to lick your face.

she also sleeps upside down

We’ve got big plans for this little one.  Frisbee catching plans to be specific.  So we spend a lot of time throwing these junior puppy frisbees around.  For now, when we do this, Patsy just looks bewildered.  We’re working on it.

working hard

Penny and Patsy pretty much adore each other and spend their time like this:

Or like this:

It hasn’t all been super fun…there’s always the joy of house-training, the trials and tribulations of crate-training, the dismay of chewed shoes…but this will pass.  It was a hard time for her to arrive too, since I had like, a billion doctor’s appointments this week, but Chris saved the day and has been a marvelous puppy-sitter.  When I get frustrated I just try to think of the blissful hours we’ll spend in the park, throwing the frisbee.  We’re also really happy Penny has a buddy now.  Honestly, despite the work, I always want more dogs, but for now the two will do.  If only to preserve poor Chris’s sanity.  She’s my cancer bravery reward.  I’m so glad to have her.

The past few days have been all about puppies and doctor’s visits and the warm weather making me all twitchy to ride my bike, but I’ve got a couple of fun posts coming in the next few days.  I don’t want to make this post any longer now, but good news and good times abound!  Stay tuned!

Here’s some more Patsy to play you out…

Chris gave me this magazine last night…

6 Mar

Getting my planks back

2 Mar

So, how exactly does one get one’s groove planks back?

I can barely hold a plank position for 10 seconds, people.  Honestly, probably not even 10 seconds.  5 seconds.  Or less, maybe.  I used to eat planks for breakfast.  High plank, low plank, side plank, plank on my elbows and mountain climbers like nobody’s business.  It was my favorite form of abdominal exercise because I HATE crunches.  I’ve never been a super star athlete or anything, but I always exercised.  I mean, right before my diagnosis I was scheduled and trained up to ride 100 miles on my bike.  An hour and a half of yoga was satisfying.  I looked forward to spin classes.  Now my knees hurt after walking on the treadmill.  Chemo drugs didn’t just obliterate my cancer and red blood cells, they also lay to waste a lot of my muscle mass.

I know there are some athletes out there reading this.  So, athletes, how do I do this?  I’ve never had to come back from being this unfit.  Do I walk on the treadmill and work my way up from there bit by bit?  Do I jump back into spin classes and just do what I can until I can do it all?  Do I get right back on my bike or are there intermediate measures that need to be taken to achieve some kind of base level of fitness?  How do I not hurt myself?

I’m most looking forward to riding my bike again.  I’ve seen the hardcore gear-head cyclists out there already, being all badass in their arm warmers and I’m super jealous.  I’m going to buy myself this jersey to keep me extra motivated on the hills of East Haddam.

This one too!  How currently appropriate.

fatcyclist.com is a great blog

Bottom line is I’ve probably just got to be patient and forgiving of myself.  I’m making progress.  My hair is slowly coming back in highly attractive and alluring rangy patches.  My eyebrows are filling back in, and the little baby eyebrow hairs have the effect of making my brow area look speckled with dirt.  My eyelashes are also filling back in but apparently baby eyelashes don’t know which way to grow and tend to jab my eyeballs at random times.

Really though, I’m feeling a lot better.  A lot better.  For example, I’m currently going through some old music I haven’t listened to in forever and really enjoying it.  It didn’t even occur to me to do this two months ago.  I was too tired and feeling too yucky and overstimulated and drained.  But woah!  Now this music sounds really good!  I’m really enjoying it!  I know you all know this already because you didn’t have chemo but music!  It’s really great!  I’m feeling up for being entertained and I’ve got energy to enjoy things.  This is great.  I’ll get my planks back eventually.

Here’s me playing my accordion*

 

 

 

 

*Lies.  That’s not me playing.

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