Mommy has a boo-boo?

To say my 2.5yo son is obsessed with trains would be an understatement.  He can spend hours in his playroom  building tracks and having conversations with Henry, Hiro, and all of his other Thomas the Train friends.  But every now and then, he does decide to venture to other areas of the house.  He did this yesterday morning when he asked to come upstairs while I got dressed after my shower.

“Mommy has a boo-boo?” he asked, when I took off my robe.  I had to choke back tears at this question.  This little guy was so concerned, and really, I wasn’t even sure what he was referring to.  The scars on my breasts (does he even have other breasts to compare)?  The hip-to-hip incision scar?  The scars to the sides of my belly-button from the laparoscopic surgery?  The various red areas where I’ve placed and removed estrogen patches?  He has seen me with various cuts or bruises on my hands or legs – he always asks if he can kiss it to make it better, just like I do with him.  But this was probably a horror show!

It’s always been our practice to respond to our son honestly.  He asks a lot of questions – a lot! – and I love that about him.  When he asks where the moon is during they day, I don’t say things like “moon went by-by” – I explain to him how the planets spin and why we can’t see the moon during the day and instead see the sun.  I never just say “because” in response to a question – I always give a full explanation.  My husband does this too, and because of it, our son is inquisitive and has what I think are exceedingly strong verbal skills for his age (I’m sure most moms say that, but it’s true for him!).   But I didn’t know how to answer this question.  While I was recovering from DIEP almost a year ago, he didn’t know more than five words.  So, while I had to explain to him that he couldn’t jump on me or that I couldn’t lift him, he wasn’t able to respond with questions or express any curiosity.  And, I made sure to do all of my dressing and undressing behind closed doors.

Yesterday morning, my instinct was to explain that I’d had surgery so that I wouldn’t get sick, but he’s only two – I didn’t want to scare him.  I didn’t want to mention doctors or anything that might make him afraid to see his own doctor (especially since he might be having eye surgery soon, and he also has his first dentist appointment next week).   This interesting article was published this summer, discussing why BRCA+ moms and dads should talk to their children about their genes; the woman in the story talks to her daughter about BRCA when her daughter is 12.  Watching In the Family with adolescent children would also be a good option.  My cousin, Alisa, has written a beautiful essay on this topic: it’s featured here on the FORCE website.  But again, her daughter was a bit older than my son when she asked the question.

I know there will be a time when I’ll have to explain BRCA to my son, but I don’t think this is really it.  One day, he will see me in a locker room at the pool and he will ask why other moms have nipples (although perhaps he won’t use that word) and I don’t.  One day, he will ask directly about the vicious scar across my abdomen.  But at 2 years old, this isn’t the right time to explain all of this.

But I did want to be honest.  So when he asked me about my boo-boo, I told him, “Yes, mommy has a boo-boo, but it doesn’t hurt.”  “Doesn’t hurt?” he asked. I repeated that no, it didn’t hurt.  I didn’t ask if he wanted to kiss it.  I just waited until he said “Ok” and toddled back into his own bedroom, and I finished getting dressed.

On Friday I will have my second (and hopefully last) stage of breast reconstruction.  And over the next few days, I’ll be thinking about how I can answer the questions my son will have that he wasn’t able to verbalize during my last recovery.

 

Free Our Genes

Today, the Supreme Court will begin hearing testimony regarding the patenting of genetic material/DNA.  While there are a lot of people talking about how bad this is, there’s not a whole lot of explanation about WHY you shouldn’t want a private bio-labto own your DNA.  If you haven’t read the book, The Immortal Life of Henrietta Lacks, it’s a great example of what goes wrong when scientists use DNA without the permission of the person from whom that DNA came.

Here are reasons why you don’t want Myriad, or anyone else for that matter, to hold a patent on the BRCA gene (or any other gene):

1) No one can do research on these cells except Myriad, which means there are limits to what this DNA could potentially do for science. In fact, Myriad makes so much money just from BRCA testing (at $3000+ a pop) that there’s no reason for them to use your DNA at all, thus making it of no benefit to science whatsoever.  They could just throw it in the garbage!

2) Only Myriad makes money from any scientific developments that come about from using your DNA (so, if they use your genes to make a cancer treatment that makes billions of dollars, you don’t see one cent – although I suppose I’d be thrilled to just be credited by them naming the treatment after me!).  This is basically what happened to Henrietta Lacks, whose family lived in poverty for generations while scientists and labs made millions of dollars on vaccines they developed from her unusual cells.

3) Myriad can charge whatever they want for BRCA testing.  And not all insurances are willing to cover the whole cost, if any.  This puts many people at risk – keeping people from that type of information may as well be considered manslaughter.  Ok, perhaps that’s exaggerating, but seriously – if you don’t have the information you need to make important decisions about your health, it could be a matter of life or death!  Not to mention, getting results back from Myriad can take several weeks, sometimes months.  If your doctor was allowed to do it in an on-site lab, you could have results the next day for less than $200.

4) You can’t get a second opinion on the results of the BRCA test.  If Myriad says you’re clean, then you can’t have anyone else do the test to make sure they’re correct (and, for the record, they have been wrong!).  Likewise, if Myriad says you do have the gene, then you’re likely to have multiple surgeries based on those findings, all without being able to double-check that you do indeed have the mutation and that the surgeries are necessary.

5) Myriad and these other labs are just greedy bastards.  What could possibly be their reason for wanting to own a patent on DNA?  Money.  Pure and simple.  I can’t think of another justification for wanting to withhold anything from the scientific community that could help thousands, if not millions, of people get medical information and treatment that they need.  This is all about greed.

There is, however, one good reason you might want a private lab to own your DNA.  The way I figure it, my DNA has cancer in it.  And if Myriad owns it, then I should be able to sue them for its defectiveness.  So there.

 

Here are some great resources to learn more about this issue:

Joanna Rudnick’s In the Family documentary, for free on PBS.org.

Today’s story on NPR’s Morning Edition.

Sue Friedman’s important blog post.

The ACLU explains its case.

Salt Lake City Tribune (Myriad’s headquarters are in Utah)

Forbes magazine article gives voice to Myriad’s CEO, and shows how much of what he has to say is just lies.

Karma – It’s Contagious

Today was sort of a whirlwind in my breast cancer world.  A faculty member in my department, someone I actually know and have a friendly relationship with, has been diagnosed with breast cancer.  She is having a mastectomy on Tuesday.  There are 51 full-time faculty members in my department.  Now two of them have been diagnosed with breast cancer in the span of three months.  Not to make light of the situation, but I feel like it’s contagious.

But then again, so is karma.  While I was out, two faculty members took over my three courses with only four days notice.  So, I have offered to take over my colleague’s course and will be teaching it for the rest of the semester – only four more weeks.  Many people went out of their way for me while I was out and without really even knowing me – I have only been teaching at this school since August.  The least I can do is pay back the favor.  It’s good karma.

Today I also read that Joanna Rudnick has been diagnosed with breast cancer and is scheduled for a mastectomy sometime in the near future.  I don’t know Joanna personally.  Many people in the BRCA community have probably seen her documentary, In the Family, which has helped to bring a lot of people to FORCE.  If you haven’t seen it, you really should (and right now it’s screening free on the PBS website in order to raise awareness for the upcoming Supreme Court debate about gene patenting).  When Joanna was beginning her documentary several years ago and looking for BRCA stories, she and I exchanged a few emails; I went back into my gmail and realized that I had saved them.  At the time, we were both single.  I was a grad student and didn’t have good enough insurance to have prophylactic surgery – not to mention, I wasn’t even ready to do it and back in 2006, it was completely taboo – I didn’t even tell my doctor about it because I was told my insurance could actually drop me because of my genetic status.  Anyway, somehow the conversation petered out and we never did meet to talk about her project.

I obviously read a lot of BRCA blogs, so I know a lot of BRCA stories.  But I was sort of surprised when I read just this brief bit of Joanna’s story:

She was breastfeeding her second daughter when she found her breast cancer, less than a week after a move to the Bay Area with appointments pending for prophylactic surgeries.

I couldn’t help but read into this a bit: like me, Joanna put off prophylactic surgery because she wanted to get married and have a child, or at least explore those possibilities before amputating her breasts.  And, like me, once she was ready to go for the surgeries, it was too late – the cancer got to her first.  Because the story says she is currently in treatment, I’m assuming her cancer was more advanced than mine.

I emailed Joanna.  I’m sure she thinks I’m some nut job and she probably receives hundreds of emails a day from anyone and everyone with a BRCA gene, but I just had to because of how similar our stories seemed.  I suppose I was a bit worried (and I acknowledge that this is very very presumptuous) that like me, Joanna might be really angry with herself for waiting too long.  Of course, like me, she might also feel that it was worth it in order to get the husband and children she clearly wanted and to have the opportunity to breastfeed those children.

I don’t expect to hear back from Joanna – she’s basically a celebrity of sorts!  And maybe it was wrong of me to email her, especially as she’s undergoing cancer treatment.  But again, it did feel like some kind of karma that I had saved those emails, and  maybe now she knows there are people out there whose stories are even closer to hers than she probably thought.