National Previvor Day, HBOC Week and My Charmed Life

At the ripe old age of 8, pennies saved, I bought a special treat at summer camp. A charm bracelet. More than 40 years later I still have it despite numerous cross-country moves and a tendency toward getting rid of stuff. Packrat is not a word anyone would use to describe me. I do not know why I have held on to this fragment of childhood.

1970 Camp Wynakee charm bracelet

A couple of days ago I bought a charm for the first time since 1970. It cost quite a bit more than the last time I made such a purchase. Part of the proceeds from the sale of this charm went to support the only national non-profit organization dedicated to helping people who face hereditary breast and ovarian cancer. FORCE and its resources on both the local and national level have been indispensable for me and my BRCA1-positive family.

Silpada charm “Red Hot Love”

I don’t even own a charm bracelet, besides my tarnished vintage summer camp beauty. What possessed me to buy this pretty bauble? It seemed appropriate. Not only because it helps support a fine organization, but it is a reminder of one of the unexpected rewards that have been part of my personal journey this year as I’ve had one surgery after another to keep cancer from returning. Love, in so many forms has come my way from family, friends and perfect strangers. It’s been wonderful and humbling.

During the midst of a long and difficult hospital stay I learned my sister Anne had tested positive for the family mutation. Among the three girls in my immediate family, she is the only previvor. Wednesday is National Previvor Day. Yesterday, I sent my sister a care package filled with things she will find helpful during her own upcoming surgeries. Some love went in that package too.

 

 

 

BRCA and the Men in My Family

Christmas, 1976. All of the boys on my Dad’s side of the family posed for this snapshot, including Henry the dog:

The Pritchard Men

Only one of these men remains alive today. The rest all died from cancer. On the far left, my Dad’s brother, a brilliant engineer and entrepreneur, died from lung cancer. Uncle Bill was in his late 70’s and a reformed smoker. On the far right, is cousin Hugh, Uncle Bill’s son. He died at age 51 from cancer of the bile duct. He had complex health problems including diabetes. In the back is my Dad who died of leukemia in his late seventies. Leukemia and lung cancer also killed my Dad’s father and mother. In the middle, the young boy and lone male left in my family is my brother John at age 12.

My brother, now age 48, does not want to know if he carries a defective BRCA1 gene. Some of my uncle’s children have chosen to test for the gene and some have not. It is a personal decision. Not everyone wants to peek inside their own DNA. I get it.

I am not sorry that I chose to test. Nor do I regret the massive amount of surgery I’ve endured in order to thwart more cancer. Of the seven children born to my Dad and his brother, 3 are either cancer survivors or have died from cancer. Of these same seven children that comprise my generation, only two had kids of their own.

National Hereditary Breast and Ovarian Cancer Week is September 23-30th. I hope the next generation of my shrinking family knows their history. None of the four girls who are members of that next generation have the last name of Pritchard, but they have some Pritchard genes. My fingers are crossed they are not the crummy ones.

Kate’s Hooter Blog and My Halloween Costume

Yesterday I had over 1,000 views on my blog. I suppose I should thank the Duchess of Cambridge, Her Royal did-you-think-they-would-leave-you-alone Highness, Kate Middleton. A few people stopped by to look at other stuff but who cares. From all over the planet they came, hoping to sneak a peek at the fair Kate, lounging in sunny France sans top. Today, the viewership is about half which is still ten times my normal traffic. Yesterday I enjoyed frequent checks on my ballooning stats. Today? Meh.

This blog began because I was informed by several experts that a blog is obligatory these days for the author of two books. Might help me sell a few more books, connect with readers, that sort of thing. Regular posts rarely occurred and usually involved my two favorite topics in this life: wine and food. Only in the last six months did I begin writing about my experiences as a BRCA-positive breast cancer survivor. Now I cannot seem to shut up. My primary reason for writing about this crap is entirely selfish. It’s good for my head. I enjoy talking with others who are on some version of this same insane carnival ride. Also, it keeps me writing. There have been many days this year when this blog seems to be the only thing I can write.

On to Halloween and my attire.

Hospital gown time again.

10/31/2012 will be my 7th surgical procedure this year. After much reflection I have decided that I do not want yet another breast revision with fat grafting procedure. What I have is good enough. This means I can proceed with nipple reconstruction. The final step will be tattooing to make the grafted skin appear more like normal nips, but that will come down the road. The plastic surgeon refers to the tattoo procedure as the icing on the cake. I  already have four tattoos. These consist of four tiny blue pinpricks that helped guide the technicians who administered radiation treatment to my left breast fourteen years ago. I don’t much like tats of any kind, especially not today’s popular eyesores that were once the domain of circus freaks, but I’m ready. Icing is yummy.

 

Show Us Kate’s Ta-Ta’s!

Kate Middleton rocks a white bikini

So much fuss over a beautiful, young woman on vacation with her husband doing a bit of topless sunbathing. It’s the paparazzi and our endless fascination with the rich and famous that are the problem here.

No requests from every corner of the world to see another Kate’s breasts. Of course I am talking about the actress Kathy Bates who recently revealed she had a double mastectomy for breast cancer. She’s also an ovarian cancer survivor.

The amazing Kathy Bates

Frankly, I do not want to see either one of these Kate’s boobs. Hell, I don’t even want to look at my own work in progress at the moment. I’m kinda sick of the whole thing.

 

 

Eleven Since 9-11

Eleven years ago this morning I crossed the I-205 bridge in my shiny new Acura, en route to my job as Creative Services Manager at Leatherman Tool Group in Portland, Oregon. Early that day the first tower went while I chugged along on the treadmill at the gym. The second exploded in flames while I dressed. As the events of that infamous day unfolded I knew the world would forever be a different place, but there was work to do. There was that brand new employee to orient and train, a massive packaging redesign underway, a new ad agency in the thick of a major campaign and a whole host of project management nightmares. High stress, heavy workload, super-sized challenges. Situation normal for me.

Fast forward eleven years and here I sit, still in sweats, alone in my silent house. I have no deadlines other than ones of my own choosing. No boss. No behind of a boss to kiss. Co-workers have been replaced by cats. That same shiny Acura, now an old car, is still in the garage. Today I paused to take stock. So much has changed.

“Osama Bin Laden is dead and General Motors is alive!” That is what VP Joe Biden screeched gleefully at last week’s Democratic Convention. True, but at what price? America is broke, still fighting a lost war and mired in painful economic doldrums. However, we did manage to put a smart, eloquent black man into the highest office in the land. Someday a woman will hold that job, I feel certain. In 2001 all we had for leadership was that horrid little weasel, George W. Bush.

Since 2006 I have been either underemployed or not working at any traditional job. I freelance as a copywriter, am the author of two e-books and numerous articles published in both traditional and online media. Thank the powers that be my husband still has a real job or I’d be a bag lady living under a bridge, eating stale Cheez-Its and muttering to myself. My paycheck and the prestige of a good job are the only things I miss about the corporate world. Besides, if things had gone according to plan we’d be living in our vineyard in Argentina and traveling the globe. Yes, I dreamed big and failed and it is okay.

Gains and losses abound in my personal life. Too many to document over the past eleven years. Most of 2012 has been spent chasing a single goal – the prevention of more cancer in my genetically flawed body. Surgery and recovery on a scale far greater than I ever anticipated have taken a toll on me and all those in my world. I have said “I love you” more often this year, to more people than in any of my 51 years of life. That love balances out the painful, irrevocable losses and keeps me moving forward.

In 2008 my great-niece Bailey was born. Some day she will learn about 9-11 in school in much the same way as I learned about pivotal moments like Pearl Harbor Day. September 11th will be a question on a history test for Bailey and that is as it should be.

Well, Rat Turds.

I put off vet visits for all 3 of my cats until this week. My two British Shorthairs are big, burly critters. Typical for the breed. Their oversize carrier is known as the Horse Trailer around here. After my last surgery it was too heavy for me to tote. Just routine vet stuff. Shots. Exams. The oldest cat goes every six months since he is an ancient geezer. No big deal to let this chore slip behind a month, but I could have taken the old guy sooner. He is roughly half the size of the other beasties, although he is the alpha cat and clearly in charge of us all.

I did not want to go see the vet. Why? Because I knew she would tell me our old cat is near the end of his life.

Count Catula as a youngster.

The breeder named him Adonis. Poor cat. The Greek god of beauty and desire was a bit much for the little old man who bought the wiry, talkative Burmese at a cat show in 1997. The old fellow was my father-in-law, Chuck. Adonis promptly became Donny. Or as some of the elderly ladies who lived in his retirement home called him: THAT DONNY. Chuck was fond of letting Donny escape and then making a show of chasing him up and down the building’s long hallways.

Donny was the apple of Chuck’s eye and they were inseperable until Chuck passed away last Christmas. By that time Donny had already lived with my husband and me for a year. Even as his body and mind failed, Chuck still believed Donny was with him in the hospital bed he was unable to leave. “Watch the cat,” he would caution his caregivers in as stern a voice as he could muster. They always did.

How did Donny become Count Catula? See the evidence below. Not only does he have enormous long fangs, he bears a strange resemblance to the great Bela Lugosi. Once removed from Chuck’s tiny overheated apartment, Donny became more active and playful, enjoyed being the boss of our two larger, younger cats and learned some new tricks. Like not getting on the counters and tables. Not scratching the carpet. Not shooting out the door.

Donny becomes Count Catula.

Now at age 15, Count Catula is a senior citizen with a bit of arthritis, some neurological issues and a penchant for barfing. Nothing new there. What is new is an obvious decline in his weight, a lack of grooming, increase in appetite and more weakness in the caboose.

Tomorrow the vet will tell us the results of $227 in tests to determine which crappy disease he has. Might even be two or three. The results almost do not matter. Count Catula will be scarfing up treats in kitty heaven soon.

Right now I’m just sad and angry that we have to deal with yet another loss in what has been a difficult year. I’m pretty resilient, but not today. Good thing there is plenty of chocolate in the house. I need it.

Count Catula figured out how to open the only door in the house that is always kept shut. The wine cellar!

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