Put Your Money Where Your Mouth Is

It’s Breast Cancer awareness month, so I’m putting my money where my mouth is. Spreading awareness just isn’t enough anymore (who isn’t aware?). But money for research can save lives. If you or someone you know has been affected by Breast Cancer, then you don’t need ice, you don’t need a bucket, and you don’t need a video. All you need is your checkbook and a stamp. Write a check to the Breast Cancer research organization of your choice (mine is going to FORCE, but other great ones include Dr. Susan Love’s research or your local BC hospital), and put your money where your mouth is. Then copy this message and post it with your picture to your Facebook page (and any relevant groups) to inspire others to do the same. Let’s get that money in the mail! Be sure to use the hashtag #Checks4BC! And don’t make me challenge you by name!!

This is Not X-Men

For all sorts of reasons, I haven’t written in a while.  Ironically, I am writing now in the waiting room while my mother is getting a mammogram – she was called back by her doctor who saw something suspicious on her films a few weeks ago.  This isn’t entirely worrying; it’s happened before, and although my mother has never been tested for the BRCA gene, my own BRCA mutation comes from my father’s family.  Nonetheless, no one likes being in the women’s imaging center, even if they’re breast-less like me.

So although I haven’t been writing, I do keep up with the BRCA world, mostly through research articles posted on Facebook groups.  Last night, I read this article, Two Genes Add to Breast Cancer Risk.  It seems doctors and researchers have found some other genetic links to breast cancer in addition to BRCA genes.  This is interesting news.  But that wasn’t at all what interested me about the article.

What interested me about the article came about midway through, when the author, Charles Bankhead, wrote the following:

However, a Finnish study of unselected patients showed that the presence of a PALB2 founder mutation increased breast cancer by six-fold, comparable to the risk conferred by BRCA2 mutants in Finland.

See that there?  See how in the first part of the sentence, the study participants are called “patients”?  And see how in the last part of the sentence, they’re called….. “MUTANTS”?  In as much BRCA research as I have read, I have never once come across this word choice for our group of people from a professional writer, scientist, or doctor.  Never.  Once.  Yes, we call ourselves mutants when we blog, when we joke on Facebook, even when we publish memoirs or talk in public forums.  But being self-deprecating in a joking fashion is quite a different thing than being called a derogatory term by a medical reporter.

This is not X-Men. This is not a movie or a comic book. We are not mutants.   I don’t know who you are Charles Bankhead, and I’m sorry to pick on you personally – I see from your bio that you have years worth of experience as a medical writer.  I would hope, then, from those 20 years of writing about medicine, that you’ve learned a thing or two about writing about patients.  We are people.  We like to be written about as such.  Please consider revising your article.

 

Review of Decoding Annie Parker

Last week, I was fortunate to be able to go to a special screening of Decoding Annie Parker.  I would be lying if I said this movie didn’t have an effect on me, but overall, I found it disappointing.  First, I’ll talk about the overall effect.  Then, the disappointment.  But I want to make clear from the onset.  Regardless of my disappointment, people should see this movie.  Its messages are undeniably important:

1. Scientific discovery can happen, but it takes time, money, and fearless innovators who refuse to give up.

2. The discovery of a genetic link between breast and ovarian cancer has implications beyond just the people who get those cancers.  It means there could be links between other types of cancers; it means research into cancer, cures, medicines, should never stop.

3. The benefits of what Mary Claire King discovered are countless, and by countless, I mean the thousands of women who have had prophylactic surgeries and preventative screenings so that they haven’t had to go through what Annie Parker went through.  Because King discovered that gene, many many many of us have and will live a cancer-free life.

4. Be your own health advocate.  Annie Parker KNEW there was a genetic link in her family.  She knew there was a reason her mother, her sister, and she were all affected by breast cancer.  And even though her doctors told her that her family was just “unlucky” – she didn’t listen.  She pursued what she KNEW to be true about her family, and she was right.

But back to the review.

Yes, the movie did have a profound effect on me.  I used to be a rather desensitized person, but since I went through postpartum depression in 2011, I am much more affected by anything sad in a movie or on tv, and I tend to go light ever since then.  But I felt it was important to see this movie.  I will forever be haunted by the scene where Annie, going through chemo for ovarian cancer (after already having gone through it once for breast cancer) vomits neon green sputum while crying, “it’s hurting me” and later weeps, “I want my mommy” (who has been dead for more than 30 years).  I was also disgusted by the scene where Annie’s husband, who spent the first twenty minutes of the movie (probably covering a span of ten years) engaging in nearly non-stop sex with her, tells her that after her mastectomy and chemotherapy, he can no longer touch her, has no interest in her because of “that hole” in her chest, and then basically walks out on their marriage.  I gave my husband’s hand a big squeeze during that part and said to him, in a voice way too loud for a movie theater, “I love you, and thanks for not being that asshole.”

The movie also affected me because I could see a bit of myself in Annie in her obsessive need to research genetics in order to find out what was going on with her family.  I do go through periods of time where BRCA consumes me.  I talk about it non-stop, read about it all the time, find that when I’m with my BRCA+ family, it’s all I can talk about.  I annoy myself.  Annie was the same way, and it in part drove away her husband and it nearly drover away her son.

Lastly, I was affected with profound sadness over what Annie went through because in a way, I feel guilty that she has suffered so much and I haven’t.  I sat with my parents and husband during the movie, and one of my friends from my local FORCE group also sat with us.  She said the same thing: how lucky we are that Annie suffered and we haven’t; how guilty we feel that Annie suffered and we didn’t; how guilty we feel that in our own family, at least one person suffered and/or died in order to realize that our family carries this gene – so that we haven’t had to suffer at all.

Really, the movie clearly had more of an effect on my mother, who afterward through her tears, hands loaded with tissues, embraced me with a death grip hug and wouldn’t let go despite my cries of “I didn’t go through that!  I don’t have cancer!  I’m fine!” and finally “Let go of me!”  I know it only took the idea of me going through what Parker did and that was enough for her – the DCIS that I had was even too close to it for her to think about.

My disappointment is that the movie did not really connect Parker and King in any tangible way.  The movie depicts Annie writing letters to King several times, and shows King tossing Annie’s letters into piles along with letters from many other women, presumably in similar situations; we don’t ever see King reading one of Parker’s letters.  We don’t know what those letters said.  Eventually, King’s team realizes that the key to their discovery is to look at genetic code from younger women.  But we don’t know if King ever received a DNA sample from Parker before discovering the gene (although we are told at the end of the movie that Parker is one of the first women to be tested for the BRCA1 gene) – we don’t know if it was her code that helped lead to the discovery.  Yes, there is a scene where Parker meets King at a lecture she gives in Detroit.  They talk for approximately 2 minutes.  King says, “You are a remarkable woman, Annie Parker.”  What is she talking about?  Did she read those letters?  Did those letters help her unlock the secrets of the BRCA gene?  Did Parker’s own research help King’s?  What sort of relationship did the two embark on once the BRCA gene was patented, and the two became co-advocates for BRCA+ patients? Frankly, their relationship seems rather arbitrary.  The movie was only 90 minutes long.  I would have loved to see another hour where this relationship was more fully developed.

Another huge problem with the movie is that it assumes Parker inherited her cancer mutation from her mother.  Parker’s parents both died from cancer.  It’s never made clear what type of cancer her father died from, but throughout the film, the gene is only talked about in terms of women (there is a brief moment when prostate cancer in men is mentioned).  It’s just as likely that Parker inherited her gene from her father.  The movie perpetuates the myth that BRCA mutations only happen in women and are only passed down to women by women.

Nevertheless, as I said, people should see this movie, whether or not they are BRCA+.  The acting is wonderful.  There are bits of humor among the sadness.  There is lots to learn from it.  Please, see it.  If it’s not playing at a theater near you, it’s viewable on demand through Time Warner cable, through iTunes, or through amazon at this link.

 

 

Decoding Annie Parker Hits the ‘Burgh

The movie, Decoding Annie Parker, will be screened in Pittsburgh at Southside Works on May 3rd, but only if 50 tickets are pre-sold.  Purchase your tickets here:  http://gathr.us/screening/7718

Mouth Cancer?

I haven’t written in a while. There’s reasons for that and I’ll explain them in a future post. For now, I just had to record what happened yesterday while I was at the dentist for my teeth cleaning.

She asked if I wanted to be tested for mouth cancer. I looked at her skeptically. Mouth cancer? Yes, she said. Isn’t that only for people who chew tobacco? Nope. Apparently there are many types of mouth cancer, anyone can have it, and she offers the testing to anyone who’s interested.

Part of me thought, “why not? Wouldn’t I want to know if I have mouth cancer?” But another part of me thought, “why would I bother with this? I went through three surgeries and nearly a year’s worth of recovery. I’m immune to cancer!” And yet another part of me thought, “my god. What if I went through three surgeries and nearly a year’s worth of recovery only to find out I have mouth cancer!”

I declined. There’s only so much I can deal with after the last 12 months. In fact, I was in her chair wearing a post-surgical bra still recovering from revision surgery less than a month ago. I think I need to rest for a few YEARS before I even think about cancer again – any type of cancer.

Geez, can’t a girl just get her teeth cleaned?