BRCA Genes, Boob Dreams, Previvors and Survivors.

Seven nights out from the last phase of breast reconstruction surgery, propped up on two pillows to protect my new nips, I had an odd dream. My sister Anne and I were shopping for clothes in a tiny boutique where we had to share a dressing room. As I reached for a beautiful blouse to try on it hit me. I had my old boobs. Yes, the big, unruly triple D’s were back. To make matters worse I had on NO BRA. It used to be I did not even walk around my bedroom without a bra, let alone go out in public without a mile of underwire, hooks and heavy-duty strappage.

2008. Left to right – my niece Emily, me, Anne, Mom. Seated, my other niece Katherine holding her new baby.

Like most dreams, the embarrassing scene floated away without any resolution or meaningful conclusion. While I’m still working on adjusting to the new version of me, I don’t miss those old cancerish troublemaking honkers. Spaghetti straps, camisoles and other skimpy things I could never wear will be in my future.

I am certain my sister floated into that dream because tomorrow it will be her turn for bilateral mastectomy with DIEP flap reconstruction. While I am at the doctor’s office getting the bolster dressings removed, she will be on the table. I ask that you send good karma her way and hope she is spared the complications I experienced. Send some good karma for my Mom too. Two daughters going through this ordeal this year has been difficult for her as well.

My Dad fathered three girls and a boy. His daughter from his first marriage has recurrent ovarian cancer. I had breast cancer at age 36. My sister Anne is the only girl in our generation who can claim the word previvor as her own. What does it mean to be a previvor?  To me it means managing the choices of being at insanely high risk of breast and ovarian cancer. These choices include increased monitoring, chemoprevention or prophylactic surgeries. Make no mistake, all of these choices are difficult and none provide a true fix for the genetic defect.

I’m truly happy my sister Anne has chosen the route of prophylactic surgeries. Right now it is the most effective strategy we BRCA mutants have.

When we were kids it seemed like I went from being flat-chested to very well endowed overnight. My dear sister nick-named me “Saggy Maggy.” Not very nice. Over the years I endured lots of teasing, suggestive comments, leering and worse, all due to my stupid big boobs. Now I’m just looking forward to a future shopping trip with Anne, both of us free from cancer. Of course, she will still have that bubble butt and I will still have no butt at all, so there will still be other things to pick on. Some stuff never changes.

1964. Me and Anne on Halloween.

 

 

 

 

BRCA Genes: DNA Dark Matter, Grills and Aloha Sock Monkeys

In case you have not heard, what science used to call junk in our DNA is not useless stuff after all. It’s really, really important. So important, it is likely to change the cancer world forever.

Here is the link to a New York Times article explaining this discovery in greater detail: http://www.nytimes.com/2012/09/06/science/far-from-junk-dna-dark-matter-proves-crucial-to-health.html?pagewanted=all

In short, the parts of our DNA that aren’t actual genes are a complex network of switches that control the genes. Why is this such a big honking deal? Because the genetic changes that cause disease are often in the switches, not the genes. You can bet cancer researchers will start work right away on drugs that affect these switches. It’s an enormous leap forward and offers hope not just for understanding and treating cancer, but for many other diseases as well. So, no more junk DNA. Welcome, dark matter.

On a more personal level I am frustrated once again by an internal stitch that does not want to dissolve. I’ve been watching this red spot for several days now and this morning a tiny wound the size of a pin head is leaking fluid. I slapped some antibiotic and a gauze pad on it and gave my right boob a lecture. It’s been nearly 7 weeks since my last surgery. Healing is a lengthy process.

When I had my initial mastectomy and reconstruction it felt like I was getting rid of the old me and building a new and improved version of me, so I thought. Turns out, the old me was pretty damn amazing. The new me? A hodge-podge that I will need more time to get used to. And I’m still under construction.

Recently we got a new gas grill. The old one was literally falling to pieces. While I love my shiny new beast, I miss the old workhorse that served me so well. I miss the old me too, but I’m not looking back. Before any more surgery we are going to Hawaii for a week. My Mom gave me a small aloha gift, pictured below. Thanks, Mom. For everything.

Hula monkeys from everythingmonkeys.com

 

 

 

BRCA Surgeries: Doing the BSO Happy Dance

One week ago today I said farewell to my ovaries and tubes in addition to completing revisions on the breast reconstruction surgery I had in January. Today it is official. The pathology report confirms all tissues were normal. No sign of cancer.

Here is how my Mom and sister reacted:

My family does their version of the Happy Dance.

This month marks fourteen years for me as a breast cancer survivor. Had I known my BRCA status sooner, I’d have had these surgeries years ago. I’ve been holding my breath since last Fall, hoping beyond hope that I had not waited too long.

Here is how my guy feels about this fabulous news:

James does the Seahawk version of the Happy Dance.

And me? Well, it took a while for it to sink in and although I feel so very lucky, I also feel sad. I’m sad for other family members who have not dodged the cancer bullet. I’m sad for those who do not wish to take the genetic testing that might save their lives although I understand why and respect that choice. I’m sad that I had to lose both breasts, even if they were big, saggy and lopsided from radiation treatment.

I know these feelings are temporary and I have not recovered from last week’s surgery yet. It won’t be long until I feel more like myself again:

My Happy Dance at the Wild Walla Walla Wine Woman Shop.

BRCA Genes and the Surgery Countdown

Three weeks to go. I feel the need to clean everything in my house. Stay busy. Have some fun. No matter how hard the logical side of my brain works, the older more primal brain sneaks in and whispers in my ear to be afraid. Very afraid. With good reason. Surgery is scary stuff.

I seek to keep myself on an even keel with regular exercise and three square meals a day from scratch with no processed foods. Well, maybe some chocolate. And I gather my good luck charms. Here is a new addition:

T-shirt from Charles Smith Wines

While Riesling may not be among my favorite varietals, I do appreciate the talents of this very colorful winemaker. The T-shirt for his Kung Fu Girl Riesling somehow reminded me that I am one tough girl. I’m ready to kick my cancer risk in the ass. Just throw in a sock monkey or two and all will be well, no matter what the animal part of my brain has to say.

Cotty and the Duck Monkey

 

Breast Cancer, BRCA genes and the The C Word

One crabby baby.

The Pacific Northwest’s cold waters produce some of the most succulent seafood known to man. Just the annual arrival of Alaska’s Copper River salmon makes foodies like me very glad to reside in Cascadia. Along with my fishy favorites of wild halibut, tuna and salmon, there are superb oysters, clams and crab here. Although it is a show stopper on the plate, King Crab comes second to my preferred crabmeat choice, the rich, sweet Dungeness. How did it happen that cancer, a dreaded human disease, came to be named after the crab, a delectable jewel of a crustacean?

For starters we can thank the Greeks. Around 400 B.C. the ancient Greek doctor Hippocrates assigned the Greek word for crab (karkinos) to cancerous tumors he observed in his patients. Around 47 A.D., the Greco-Roman medical encyclopedia writer, Celsus, translated the Greek term karkinos into the Latin word for crab, cancer. It became solidified in medical literature about one hundred years later when a prominent doctor described a breast tumor’s vascular structure as being like that of a crab’s legs.

I recall my father telling me once that when he was a child his mother refused to answer his questions about a relative who had cancer. Why? The cancer had occurred below the waist. It simply could not be discussed. The “C word” or the “Big C” is still common parlance for the word cancer even though the disease is not the death sentence it once was. The word itself simply makes people uncomfortable.

I have no bone to pick with the word cancer now that it has been part of my lexicon for so long. What irks me is another “C” word. That word is cure. With all due respect to the laudable efforts of organizations like Komen, it is my opinion that cancer is part of the human condition. As long as human beings are made from cells, those cells will sometimes go haywire and grow out of control. That’s all cancer is. A true cure for cancer will probably never exist.

For those who have a known defect in the tumor suppressor genes BRCA1 and BRCA2, the systems that protect against uncontrolled cell proliferation don’t function normally. While I feel fortunate to have received successful treatment for breast cancer once, my risk for more cancer remains high. I consider myself in remission. Not cured. I remain hopeful that gene therapies and other treatments will continue to improve the odds for the BRCA positive community, but I do not expect that the cute baby in this photo will get her wish anytime soon, if ever.

Crab-like cancer may always be with us and I’m okay with that. I still like eating crab and will keep devouring the tasty critters when given the opportunity, particularly when paired with a fabulous Chardonnay. Just don’t serve me any geoduck. It’s pronounced “gooey duck.” It is the biggest, ugliest, toughest dang clam imaginable. Not every sea creature in the deep blue of the Pacific is a delicacy. Such is life.

 

BRCA Genes and Father’s Day

In the movie version of the 1997 book “The Diving Bell and the Butterfly,” a former fashion magazine editor paralyzed by stroke spends Father’s Day on a windy beach with his two young children. He sits in his wheelchair, unable to move save for the ability to blink one eye. His name was Jean Dominique-Bauby. He wrote in his memoir about this poignant moment:

Today is Father’s Day. Until my stroke, we had felt no need to fit this made-up holiday into our emotional calendar. But today we spend the whole of the symbolic day together, affirming that even a rough sketch, a shadow, a tiny fragment of a dad is still a dad.”

My Dad passed away in 2004 from acute myeloid leukemia. Although he’s been gone for nearly eight years, I found myself thinking about him more frequently when my sister and I learned we possessed a BRCA1 gene defect. DNA testing and the results are a family affair, whether we like it or not. Frankly, I’m glad I did not have to discuss the BRCA stuff with my father. Like everything else with him, it would have been difficult. His name was Hubert Pritchard. Here is what I had to say about my Dad during his informal memorial while the Wyoming wind dispersed his ashes into the wild:

“He never looked better.”

This spontaneous jab at Dear Old Dad made most of those gathered for this solemn occasion laugh out loud. My black humor was tolerated, even appreciated. No one in this life ever had an easy relationship with Hubert, especially his four children. And yet, we’d come from all corners of the country to mark his passage, remember his life and ponder our own tiny fragment of a dad.

1966 Left to right – brother John, sister Anne, me and Dad.

As Father’s Day approaches this Sunday, I’m thinking less about my Pop and more about my father-in-law. His name was Charles “Chuck” Daugherty. Technically he was my husband’s stepdad, but he was the only man who was ever truly Jim’s father. He died less than six months ago. This is our first Father’s Day with no living dads. I was thankful Chuck passed just before I had bilateral mastectomies so I never had to tell him about the BRCA diagnosis. He loved me and it would have made him so very sad.

Chuck’s 89th birthday. He died 3 weeks later.

This Sunday on Father’s Day my husband and I will not mark the day in any special way. There are no gifts to buy, no holiday meal to prepare. We will remember these influential men in our own way. Probably over a bottle of wine at dinner with a toast. Here’s to you, Hubert and Chuck. You are still, and always will be, our Dads.

BRCA Genes, Dr. Ivan Oransky, Previvors and Common Sense

Ever watch the news on television and recognize when a story is biased? Maybe you’ve blown by entire news outlets to avoid certain talking heads. Whether it gets printed, blasted from the car radio, ricocheted through cyberspace or shown on TV, we’re assaulted with a huge amount of fluff out there that purports to be accurate information. The realms of science and medicine are no different from politics or any other arena when it comes to an abundance of conflicting voices, data and opinion. Snake oil comes in many forms. When it gets packaged in a slick presentation by a highly respected, well-known medical journalist like Dr. Ivan Oransky, I pay attention. Today, I’m calling him out.

Step 1.

Watch this video of Dr. Oransky’s presentation at the TEDMED conference in April, 2012. It takes about ten minutes. http://www.youtube.com/watch?v=IUtrYjIGdaE

Step 2.

Then read an open letter to Dr. Oransky from Sue Friedman, the director of the hereditary cancer non-profit, FORCE. http://theoranskyjournal.files.wordpress.com/2012/06/force-tedmed-response.pdf

Step 3.

Finally, read the good doctor’s response. He says the problem is the definition of the term previvor.  Is that the problem? http://theoranskyjournal.wordpress.com/2012/06/12/whats-a-previvor-cancer-advocacy-group-that-coined-term-objects-to-how-i-used-it-at-tedmed/

Here’s my two cents on this:

TEDMED invites leaders from many sectors to its conference on health care and technology. Some of the best and brightest minds the globe has to offer exchange ideas at the cost of nearly $5,000 per attendee. This elite group heard Dr. Oransky’s speech but it is unlikely they will ever read Sue Friedman’s letter or Oransky’s wimpy response. They will believe that previvorship is a suspect notion promulgated by a greedy non-profit. How sad.

I’m not an M.D. or a journalist. I did not attend Harvard. Oransky did. I am a housewife, a BRCA positive breast cancer survivor and a skeptical, voracious consumer of information related to my health problems. A dose of common sense is all it takes to recognize that Oransky did a masterful job of saying we’re all responsible at some level for the failures of our troubled health care system. It was also pretty obvious that he got some facts wrong. To call his audience “previvors” for surviving his talk was merely a poor joke.

I’m also thankful that FORCE is there for me and Dr. Oransky is not on my medical team. As far as I can tell the only thing I have in common with him is an appreciation for good Zinfandel. I wonder if he’s ever tried the Linne Calodo wine called Problem Child?