Wednesday, October 21, 2015

BRCA Genetic Testing: My Experience with the Ups and Downs of Waiting for Results

As a note up front: I eventually found out that I tested negative. I am posting this because while I went through this, I wanted as much information as I could find about the testing process. Not all testing is done in the same way, but I give you my experience in case you are interested. If you do test positive, search around and you will find some great blogs that detail everything certain women have been through. Information is power.

This is one of those posts you debate with yourself about putting out there, but today I decided that I would go ahead and share my experience with you simply because I was desperate for information when my doctor told me I needed to have the BRCA genetic test.

Back in August, I went for my usual yearly exam, and while filling out the usual paperwork, I noticed that my doctor's office had added a new information gathering sheet. The form asked for information about family history of cancer, and some of the questions were really specific--especially when it came to cancers like ovarian, breast, colon, and others. I had an idea that this was probably a way to find people who qualified for genetic testing, but I didn't think too much about it all.

I do have family members who have died of cancer. My paternal great grandmother had ovarian cancer and died before the age of 40. A great aunt on my mother's side had breast cancer, and another cousin on my mother's side had colon cancer. I assume there are probably other family members out there who had cancer, but I don't know who they are.

Anyway, my doctor came into the room. He had already gone through the sheet's information, and he told me he wanted me to be tested for the BRCA mutation. He explained about what would happen (a simple blood test), insurance would cover it because I qualify, and what would happen depending upon my results.

For those of you who don't know what BRCA testing is or what it tests for, you can get more information here: BRCA 1 and BRCA 2

Results are never universally simple if you have the mutation, and there are all kinds of options depending upon what they find, but my doctor told me that the results, if positive, could lead to me needing significant surgeries to prevent cancer--and I would need to have these sooner rather than later, because I am pushing 40.

Anyway, not sure that I would recommend that a doctor go into all of this with every patient, because it can seriously freak you out. I, on the other hand, am big into doing anything to prevent such outcomes, so hearing all of this actually made me feel better. I kind of went into the test by looking at it as a win-win situation: If I have the mutation, great--I can do something. If I don't, great--I can keep my schedule open for things other than surgery.

If this sounds all peaceful and calm to you...well, it was. I felt that way for a good 48 hours. Then, I started to panic with all of the "what if" questions. What if I had it? Would I be able to cope with all of this? I would do what I had to do, but how would we deal with it? (Those of you who know me well know that I have an unusual family situation...and dealing with two sick people would not be a good thing.) I wasn't afraid of surgery, but I was afraid of how I would cope with getting it all done (which might sound really odd, I guess).

The doctor told me all of this on a Monday. I came back to the office on a Thursday for the "simple blood test." My test was done through Myriad Genetics, and I don't know how other tests go, but this one took quite a bit of blood. I was thinking they would take a vial like they do when you have your blood drawn as usual, but I want to tell you (in case you are having this done) that the vial is much larger. I am fine with needles, and the test didn't hurt at all. But I wasn't prepared for the length of time it took. I keep waiting for it to be over, and finally I looked down (as I was starting to feel a little woozy) and realized what a big vial it was! Anyway, just be prepared. You don't feel it, but it is odd.

This was the same day, I might add, that I started feeling panicked. I wasn't at ease at all, and I just wanted out of there. I had a meltdown that night (my poor mom...ugh...bless her), and finally just resolved myself to being a nervous wreck.

Anyway, the nurse told me it would be about ten days before they got the results back. In the meantime, if the folks at Myriad saw that my insurance wouldn't cover the test or if I would have to pay more than around $350 for the test, they would call before processing the sample.

So, I waited. Almost a week later, as I was driving out of town for a meeting, I got a call from a number I didn't recognize. I didn't answer, but listened to the voicemail. It was a lady at Myriad asking me to call her. When I did, she told me that she didn't think I would qualify for insurance coverage because no one who had cancer was a first or second degree relative.

And this is where I come to my most problematic reactions to this whole testing thing: I've been told I need the test. I've been told outcomes. I've been nervous. And now I'm told I probably don't qualify.

Out of pocket expense for the test if I wanted to pay for it? 

Nearly $4000. 

Yep. People. I work for a nonprofit and have student loan debt. What the what? The problem is, I now had the question: "Well, if I don't take the test, and I do have the mutation, and I never did anything to stop me from getting cancer and I did get would I feel about that?" I felt confused and trapped and without a lot of information. Did I really need the test? I don't know about you, but $4000 is a lot of money for me.

So, the very nice lady at Myriad (she was awesome) told me she would process the request for payment to the insurance provider, just to see what would happen, but it would take about 10 days to get a response. She also told me that if I decided to take the test even if the insurance didn't cover it, Myriad would work with me to get a payment plan I could live with. But I was still confused and gradually became a bit angry about all of it.

So, another ten days passed. My nervousness lessened. I looked at the situation logically: Usually you see patterns of cancer, and we don't really have that in the family. My grandmother and her daughters are fine. Most ovarian cancers are caused by unknown reasons. And, most importantly (and I can't stress this enough), I went back to my "This test is a win-win" attitude again. Because it really is, when you think about it. And, yes, in spite of all of this, I had decided to pay for the test, because I can't deal with the idea that I "might" have a ticking time bomb that I could deactivate in some way.

Well, ten days came and went. Nothing.

Twenty days. Nothing.

I actually started to forget about it.

Sometime in mid-September, I received a note from my insurance company. They were approving the test. I hadn't heard from anyone at Myriad again, so I just assumed this would take place pretty quickly. I guess in the grand scheme of things it did, but it didn't feel that way.

Finally, in early October, I got the news that I am negative for the mutation. Very good news, of course, but what a journey to find that out. I really did dread the phone ringing, because I had to mentally prepare myself for whatever news I got, you know? When I finally did see my doctor's office name pop up on caller ID, I had a moment of panic again, but then I reminded myself (before answering) that regardless of the results, I would get through it and everything would be fine. Because it would have been.

I think my biggest fear was having to put my immediate family and household through all of that. It is hard enough when we have to take the dog in for her vet visits. How would we manage with me in the hospital for extended periods of time and a lengthy recovery? 

Still, I would have faced it somehow, and it would have been fine in the end.

So, I write this post to put another resource out there for anyone who is waiting for their BRCA results. Each situation is unique, and the circumstances under which we test are unique. Results will vary. But we do have to keep in mind that knowing is definitely better than not knowing. And, especially for those of you who have children (boys and girls, by the way...because boys can carry, too), and you qualify for testing, you need to know so that they know too. And so that you can do everything you can to be around those you love for a long time.

Anyway, just putting this out there, because you feel so lost during the process of all of this. In comparison to other things, it feels so little and insignificant, but when you are going through it, it feels like it is the most pressing thing in the world. If this helps someone, great. If not, that's okay, too. :)

Sunday, October 18, 2015

A short vent about holiday music....followed by my great day at the UNITY summit!

I've been doing a lot of driving lately, and usually I plug my phone into the USB port on my car stereo and amuse myself with podcasts. But, sadly, there is something wrong with said USB port, so I have been listening to the radio lately...and there is at least one station playing Christmas music. People. It is only October. This is just sad.

Anyway, I just felt the need to vent, but I will leave it there and get on with the update. Because I am not going to waste a post on holiday music.

On Friday, I attended UNITY: Journalists for Diversity's regional media summit ("Empowering the Southern Narrative"). I had an amazing time and learned so much, and it was great to be surrounded by so many voices and experiences. I listened to Willoughby Mariano of the Atlanta Journal-Constitution speak about investigative reporting she did that led to massive community change, and I sat in on former CNN Chief Diversity Advisor Johnita Due's keynote speech about cultivating and defining diversity in the media and in our lives. This was followed up by an excellent panel at lunch that discussed diversity in Alabama specifically. Though the panel focused mainly on issues and stories involving black and white issues of diversity that have arisen following the Michael Brown shooting, there was the question: "Yes, but what about everyone else?" I wish there had been more time to address other populations in our state--religions, cultural, sexual, ethnic, etc. But, as the speakers said, the most important thing is to start conversations. You can't change anything if you aren't willing to talk. And talking, as they said, begins right next door. Talk to your neighbors and friends. Small movements lead to big changes. And as Johnita Due said, we all bring something to the table, no matter what our life experiences are.

Johnita Due speaks about her family's history in the civil rights movement
and the importance of diverse voices in media. (My photo)
Aside from all of the fascinating conversation, this event is the first journalism specific event that I have attended in years. I mean, I work for a magazine and am therefore involved in journalism. But I'm not a reporter in the sense that most people think of when they hear the word "journalist." I was never trained as a reporter, though my first degree was in journalism. I was trained in magazine feature writing and editing, and though these are both aspects of journalism they don't always involve "shoe-leather" reporting (though, I think, some of the best feature stories do involve that). Too often now we get stories thrown at us  (and I am speaking of contemporary magazine/website sources of feature articles) that are clearly drawn from internet research only. This irritates me to no end, because so many emerging journalism students are not practiced in the art of interviewing and collecting the most important resources--those not found in a database. I do hope this changes, but I am thinking it won't. But that is the reason I admire the reporters and writers who get on the streets and into the neighborhoods to discuss the people they are reporting about. Databases are great for certain things, but they cannot replace the human voice and the perspective you can get by visiting the subjects/places/people you are writing about--so go for it!

Anyway, it was a great conference, and I am so glad I went with my co-worker, Rebecca. We also got a chance to hang out with one of my favorite Alabama authors, Frye Gaillard (so of course we had him take a photo with us!):

I'm still trying to figure out why my sweater looks so huge on me. At first I thought I was crazy for wearing it, but it was freezing in some of the sessions, so I was super happy I made the decision to dress for the arctic on an October day in Alabama. :)  It was lovely to see Frye and to hang out with such inspiring and amazing people all day. I hope I get to attend another UNITY event in the future!

Thursday, October 15, 2015

The Best Books I've Read This Year (so far...)

I have read a lot this year. Yes, I read a lot every year, but I have been a VERY active reader over the last few months. At some point before New Year's Eve, I will put up a favorites list, but I thought I would let you know about some of the best books I've read so far.

A Tale for the Time Being: Oh, wow. I really can't say enough good things about this book. It might end up being my favorite for the year. I felt like this book came along at just the right time. Here is the Amazon description:
“A time being is someone who lives in time, and that means you, and me, and every one of us who is, or was, or ever will be.”
In Tokyo, sixteen-year-old Nao has decided there’s only one escape from her aching loneliness and her classmates’ bullying. But before she ends it all, Nao first plans to document the life of her great grandmother, a Buddhist nun who’s lived more than a century. A diary is Nao’s only solace—and will touch lives in ways she can scarcely imagine.
Across the Pacific, we meet Ruth, a novelist living on a remote island who discovers a collection of artifacts washed ashore in a Hello Kitty lunchbox—possibly debris from the devastating 2011 tsunami. As the mystery of its contents unfolds, Ruth is pulled into the past, into Nao’s drama and her unknown fate, and forward into her own future.
Full of Ozeki’s signature humor and deeply engaged with the relationship between writer and reader, past and present, fact and fiction, quantum physics, history, and myth, A Tale for the Time Being is a brilliantly inventive, beguiling story of our shared humanity and the search for home.  
Nao is such an amazing character. She continues to stay with me even though I read this book months ago! I LOVED this book, and it is going to be hard to top this one.


Blood and Beauty: From Amazon:
By the end of the fifteenth century, the beauty and creativity of Italy is matched by its brutality and corruption, nowhere more than in Rome and inside the Church. When Cardinal Rodrigo Borgia buys his way into the papacy as Alexander VI, he is defined not just by his wealth or his passionate love for his illegitimate children, but by his blood: He is a Spanish Pope in a city run by Italians. If the Borgias are to triumph, this charismatic, consummate politician with a huge appetite for life, women, and power must use papacy and family—in particular, his eldest son, Cesare, and his daughter Lucrezia—in order to succeed. Cesare, with a dazzlingly cold intelligence and an even colder soul, is his greatest—though increasingly unstable—weapon. Later immortalized in Machiavelli’s The Princehe provides the energy and the muscle. Lucrezia, beloved by both men, is the prime dynastic tool. Twelve years old when the novel opens, hers is a journey through three marriages, and from childish innocence to painful experience, from pawn to political player. Stripping away the myths around the Borgias, Blood & Beauty is a majestic novel that breathes life into this astonishing family and celebrates the raw power of history itself: compelling, complex and relentless.
If you are a fan of The Borgias show on Showtime, you should check this book out. I loved that show, and I always felt that the show "sexed up" Lucrezia in strange ways and didn't show the peril of her position nearly enough. Well, this book fills in the imaginative blanks. We will never know about Lucrezia, really, but this book presents an interesting case about how she was used by her family. I believe it is to be part of a trilogy, and I am anxiously awaiting the next one!


The Crimson Petal and the White: From Amazon...

At the heart of this panoramic, multidimensional narrative is the compelling struggle of a young woman to lift her body and soul out of the gutter. Faber leads us back to 1870s London, where Sugar, a nineteen-year-old whore in the brothel of the terrifying Mrs. Castaway, yearns for escape to a better life. Her ascent through the strata of Victorian society offers us intimacy with a host of lovable, maddening, unforgettable characters. They begin with William Rackham, an egotistical perfume magnate whose ambition is fueled by his lust for Sugar, and whose patronage brings her into proximity to his extended family and milieu: his unhinged, childlike wife, Agnes, who manages to overcome her chronic hysteria to make her appearances during “the Season”; his mysteriously hidden-away daughter, Sophie, left to the care of minions; his pious brother, Henry, foiled in his devotional calling by a persistently less-than-chaste love for the Widow Fox, whose efforts on behalf of The Rescue Society lead Henry into ever-more disturbing confrontations with flesh; all this overseen by assorted preening socialites, drunken journalists, untrustworthy servants, vile guttersnipes, and whores of all stripes and persuasions.
Twenty years in its conception, research, and writing, The Crimson Petal and the White is teeming with life, rich in texture and incident, with characters breathtakingly real. In a class by itself, it's a big, juicy, must-read of a novel that will delight, enthrall, provoke, and entertain young and old, male and female.
Oh, wow. This book. THIS BOOK. I listened to it on audio, and now I am reading it. A warning: It is very gritty and graphic, so if you can't take the reality of prostitution--and Victorian-era prostitution at that--then I would say don't go there. That being said, though it could be jarring at times, this book is another one that has stayed with me for a really long time. I bought the movie (good...but not as good as the book) and the short story volume that accompanies it (fabulous). At first I thought that I just couldn't get into a book that has a main character named Sugar. Seriously. I've had the print book for a long time, and every time I would try to open it, I would see the name "Sugar" and want to groan. I had a free audio download and thought, "What the hell?" So, I downloaded it...and after about fifteen minutes, I was hooked. As in so hooked I wanted to skip work to keep listening. Granted, the narrator was fantastic, but the story just took me to so many places--good and bad. LOVED this one, and I highly recommend it.


What I Talk About When I Talk About Running: From Amazon...
An intimate look at writing, running, and the incredible way they intersect, from the incomparable, bestselling author Haruki Murakami.While simply training for New York City Marathon would be enough for most people, Haruki Murakami's decided to write about it as well. The result is a beautiful memoir about his intertwined obsessions with running and writing, full of vivid memories and insights, including the eureka moment when he decided to become a writer. By turns funny and sobering, playful and philosophical, What I Talk About When I Talk About Running is rich and revelatory, both for fans of this masterful yet guardedly private writer and for the exploding population of athletes who find similar satisfaction in athletic pursuit.
Anyone who knows me knows that I have had a Murakami fest over the last year. I LOVE MURAKAMI. So, when I took my vacation in June, I checked this out from the library. I had decided to get back into running, and I couldn't imagine a better read than a book that combines thoughts about running and writing. Like so much of Murakami's work, this has its own rhythm and balance. I still want to buy my own copy, because I know it is one I would like to reread.


Cleopatra's Moon: From Amazon...
The only daughter of the last queen of Egypt watches her beloved father--Mark Antony--fall on his sword in front of her. Then she hears the haunting wails of the priestesses of Isis on the island of Pharos and knows her mother died. It is the end of Cleopatra's rule and the start of Selene's nightmare. Her parent's vicious enemy, the snake-like Octavianus, forces Cleopatra Selene to march through the streets of Rome in golden chains and then sentences her, along with her brothers, to live as political prisoners in his own home.
There she fights desperately to keep her brothers safe from poisonings and secret assassination attempts. Selene plots furiously to do what she knows her mother Cleopatra would want her to do--reclaim her destiny as the queen of Egypt. While plotting with her mother's agents in Rome, Selene knows her best shot at retaking Egypt's throne is to beguile her despised captor's nephew, Marcellus, the beautiful, golden-haired heir to Octavanius. But Selene unexpectedly falls in love with a fellow political prisoner setting off a deeply personal crisis: Does Selene choose the man she loves over the man who could help her rule Egypt?
Selene is determined to live up to her mother's last whispered words to her--"You have the heart of a great and powerful queen," but at what price? Is she doomed to live and die like her mother, trying to use sex and seduction to make strategic alliances to gain power? Or can she take destiny into her own hands and create a future her mother never imagined? 
Life in Rome has its own surprises and Selene discovers that trying to follow in her mother's footsteps unleashes dangerous and unexpected consequences. Will Selene make the same decisions--and mistakes--as her brilliant but doomed mother? Or will she find a way to forge an identity and future all her own? 

Again, this is another book I had for a while before reading it. AND I LOVE IT SO MUCH. (And I am just now realizing how much historical fiction I have read over the last year...and how many are my favorites!!) Anyway, the writing in this book is lush and beautiful. It is one of those stories that absorbs you into it so quickly that you are reading more than you realized! I am still reading this one, because I only allow myself so many pages a day...I want to drag it out. The author is skillful in showing the development of Selene and the powerful family and political dynamics at work in her life. I am also amazed at how powerfully the author brings to life Selene's mother, Cleopatra. The famous queen dominates the page when she appears, and this is no accident, because later Selene learns to do the same. I highly recommend this book. It is technically a YA novel, but like the best YA, it crosses genre and audience. Beautifully done and definitely a favorite forever.


So, I do have a few more books I plan to read before the new year, and there is one in particular that could take the crown for favorite book. I  have to admit, though, I am almost afraid to read it. Here it is:

I've heard so many wonderful things about Hanya Yanagihara's A Little Life, but I also hear (from most readers) that it is an emotionally taxing book to take on. If you are thinking about picking it up, be aware that there are graphic descriptions of abuse (psychological, emotional, sexual, physical) to a child. I'm not sure I will be able to handle it, but I sure hope so. I  have heard that, even though it is a very hard book to read in parts, readers have been expressing a bond with this book that is astounding. The review that finally convinced me that I  have to read it is here (if you don't mind some spoilers): YouTube Review. So, I am going to read it before the new year and get back to you.

OH: And if you are curious about how my reading challenge is going, see HERE.

Monday, October 12, 2015

Moonlight and Magnolias: A Great Regional RWA Conference!

Hi, everyone. I have not had a chance to update the blog because so much has been going on. I went to Moonlight and Magnolias in Atlanta from Oct. 1-4. This is a regional conference put on by the Georgia Romance Writers chapter of Romance Writers of America. It was a great conference, and I learned so much! I went to sessions on plot and character development, and I attended Candace Haven's three-hour class titled "Fast Draft and Revision Hell." It was intense, but I learned more than I could have imagined. I may even sign up for her online class.

On Saturday, things got a little crazy for me. I went to one session about character development, but I missed most of another session on using humor in writing, because I had to make a phone call to my cousin (he's in the Army, and it was his birthday).   :)

We had a nice lunch with our keynote speaker, Chris Marie Green. But during the lunch, I received a text from my mother saying that my grandma was in the hospital...which led to several days (when I returned) of sitting in the hospital...and, well, you get the idea. No blog posts! Anyway, we are slowly getting back to normal now, so I thought I better update!

Anyway, that is about it for now. I'm super busy still playing catch-up, so I will post more later.