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

 

BRCA Surgeries: Summer Fun Comes First

Pacific Northwesterners who live in the valleys west of the Cascades often experience an extra month on the calendar. It is known as “Junuary.” It is a combination of June and January. When most of the rest of the country is well into the heat of summer, we are still cool, wet and gray. The month of Junuary occurs somewhere between late May until just after Independence Day. Many  4th of July celebrations in these parts involve getting bundled up to watch firecrackers. The shows do not begin until 10 at night because in spite of the lack of warmth, the summer sun stays high in the sky until very late. While we may see some bursts of summer weather during Junuary, most folks just pretend it is summer by wearing shorts along with a heavy sweatshirt or fleece.

By mid-July summer proper arrives and with it comes hot, sunny days with scant rain and pleasant nights. Farmer’s markets fill to the brim with berries and flowers. Dinner at our house is served every night on the deck and we are content to stay close to home. Summertime in the Northwest is spectacular, if all too short. For me, now less than 4 weeks from another major round of surgery, the peak of summer will be spent recuperating indoors. I grumbled about this to my guy James. He wisely planned a few blasts of summer fun for us to enjoy before surgery on July 20th.

Riding shotgun in my friend John’s Lotus Elise.

This past weekend we left the gloom of Junuary behind and headed to eastern Oregon, Washington and a snippet of Idaho. The weather gods smiled upon us and 27 sports cars that belong to members of the Oregon chapter of the Porsche Club. There were a few Ferrari’s, a Lotus, a Mercedes Super Car, a Corvette and many flavors of Porsches. We screamed through deserted canyons and ranchland, into tiny farming towns and over the mountains in search of winding roads not heavily patrolled by cops. At night we gathered in Walla Walla wineries for catered meals and rivers of fine red wine. It was summer, if only for the weekend.

Hat Rock State Park pit stop

Yesterday’s return journey brought us through the many dramatic landscapes of the Columbia River Gorge. Almost home, we stopped briefly at Beacon Rock State Park where it was breezy, overcast and 70 degrees. It is a beautiful spot, but we were back to Junuary weather.

Beacon Rock State Park

Next up on our social calendar is a small dinner party where we’ll be tasting a stellar lineup of Zinfandel blends from Paso Robles powerhouse, Linne Calodo. I’d hoped we could dine under the stars, but no such luck says the weatherman. The dining room will have to suffice. After all, it is still Junuary.

Porsche Carrera GT

Ferrari 308 GTB

Mercedes Super Car SLS AMG

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 Surgeries: Hurry Up and Wait

“The waiting is the hardest part.” From the Tom Petty Song “The Waiting” 1981

Photo Credit: irargerich

Serious health problems come with a phenomenon that every patient will experience at some point. Lengthy periods of waiting. Sometimes the wait is in anticipation of treatment. Other times it’s to hear the results of a test or procedure. My favorite involves hanging out in a chilly exam room, clothed in only a gown, feet dangling, appointment time long overdue. After fourteen years as a breast cancer survivor one would think I’d be used to the drill, but I’ve hit a new low in medical administrative inefficiency and now I am on the warpath.

For two weeks I’ve been caught in a communications snafu between two surgery schedulers. I do not know which one to loathe more. Today I had to get one of my surgeons involved. He apologized to me on behalf of the hospital and he’s decided to do an end-around. He will contact the other surgeon directly.

I am not a patient person by nature. Neither am I stupid. Antagonizing the support staff in the surgeon’s office is not a good way for patients to get what they need. I’ve contacted both schedulers myself, more than once. While I would take great pleasure in ripping both of these women a new one, no F bombs have been hurled. Nor will I be passive and accept poor service. Patients must be their own advocates.

Rant completed. Unlike my surgery, a large pile of laundry and a dirty oven can wait no longer.

 

UPDATE 6/20: More excuses and apologies. No date yet. Sigh.

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?

BRCA Surgeries: Stage II and a Clean Garage

Jack Sprat could eat no fat, his wife could eat no lean. So goes the old nursery rhyme. They are often depicted something like this:

Mr. and Mrs. Jack Sprat

I sold Jack Sprat an old file cabinet for seven dollars this morning at my neighborhood garage sale. His wife bought a graphic calculator, a cookbook holder and a toy.

Grizzly Adams was next. Turns out the legendary California mountain man is actually a car restoration buff who snapped up my husband’s model cars. Studebakers and Model T in hand, he ambled off with his catch. He looked like an older version of the seventies TV character albeit with less perfect dental work.

Grizzly Adams

The stream of humanity that passed through my garage this morning included an elderly woman pushing a baby in a shopping cart. She was looking for a stroller. Another woman yelled out her car window to see if I had a sewing machine. She gave me a friendly wave from her Mercedes as she pulled away. I had no sewing machine and she was on a mission. A neighbor who I seldom see came by to say he was still using an ancient television he purchased at our garage sale more than a decade ago. He left with a perfectly hideous $3 lamp for his wife. Sweet.

At the end of the morning I was some $75 richer, my junk was someone else’s treasure and the garage was neat as a pin. The best part was I could participate in this everyday, ordinary activity without assistance. Three months earlier I could barely pick up a cat and there I was, moving furniture, cleaning the garage and haggling with a plump Hispanic gentleman who spoke no English but coveted my spiffy backpack designed to hold a Playstation 3 gaming system. This post-mastectomy body, so fragile and weak a short time ago, is doing just fine, thank you very much.

Must be time for more surgery.

Yesterday the plastic surgeon snapped a few photos, asked questions and typed notes in my electronic chart. The date isn’t set but it won’t be long before Stage II breast reconstruction revisions and bilateral salpingo-oophorectomy will have me back in that baby-poop brown recliner in the family room once again.

I plan to spend my garage sale loot stocking up on dark chocolate to combat the inevitable post-surgery blues.