Mourning another Pritchard, Cancer Anniversary and Why BRCA Testing Matters.

It’s been quite some time since my last cancer-related post. Most of this past year I blogged about life in Southern Arizona as Jim and I began a new chapter. That blog is located at leeasbellqc.wordpress.com just in case you want to drop by for a visit.

This month marks my sixteenth year as a cancer survivor. It also marks the passing of yet another family member who died young from cancer. I have never spoken about her by name in any of my writing. She valued her medical privacy. Now that her seven-year struggle with ovarian cancer has ended I would like to share a few aspects of her story.

Katherine Pritchard

Katherine Pritchard


My Dad’s daughter from his first marriage was always known as “Koko” and we saw little of her when we were kiddies. She was six years older than me, did not get along well with our Dad (who did?) and as a result, I did not know my half-sister until we got re-acquainted at the wedding of our first cousin in 1987. Here we are at the wedding along with my younger brother, John.
A younger, thinner, curly-haired self with JP and Koko.

A younger, thinner, curly-haired self with JP and Koko.


My Dad (leukemia) and his only sibling, my beloved uncle, Wilbur Pritchard (lung cancer) had seven descendants. Two are now dead from cancer. My cousin Hugh died in 2005 at age 51 from bile duct cancer. Koko left us on the 4th of July, just a few weeks after her sixtieth birthday. And then there is me, the long-term breast cancer survivor and first member of the family to discover we have the BRCA1 mutation. Had Koko never gotten ovarian cancer, I might never have tested.

Back in the summer of ’98 when the BRCA tests were not covered by any insurer and there was no family history of breast cancer, I declined the $4,000 test and proceeded with treatment. I had no children and knew I never would. Perhaps if I had kids my decision might have been different. Fast forward to 2011 when my gynecologist asked me to consider testing again, even though I had been cancer free for a long time. Ovarian cancer occurs more commonly after age 50 and I had just hit that mark.

I had no idea that BRCA can of worms would be so big. Not only did I have the BRCA surgeries, my other sister Anne tested and was also positive. She had the surgeries too. We may both owe our lives to Koko’s fatal illness. Recently my brother JP had a horrific episode in the hospital with a ruptured appendix and now, pancreatitis. I have urged him to be tested for the family mutation without success. He does not want to know and I must remind myself that his decision must be respected, even if I do not fully understand why.

Today, I found a new cancer home at the University of Arizona Cancer Center. I was due for a checkup. Routine stuff, but very necessary for anyone with a high risk for cancer. Once the boobs and the ovaries are gone, too many BRCA-positive women get lax about other screenings. The breast surgeon informed me it would be a good idea to be screened for pancreatic cancer. This is no easy task. It involves an abdominal MRI and EUS, an endoscopic ultrasound. If the ultrasound is clear, I will only need an annual abdominal MRI in future years. My insurance will pay for these spendy tests because I am high risk. Without the knowledge of my BRCA mutation I would not get this care. Pancreatic cancer is incredibly deadly because early detection is so difficult. Much as I hate more surgical testing, it beats the crap out of more cancer, especially a killer like pancreatic cancer.

While I will always be thankful to my sister Koko for helping me to discover the seemingly never-ending BRCA mess, it saddens me greatly that she herself never tested for our family mutation. Early in her illness they tested her for the three Jewish BRCA founder mutations but not the full panel. That was in 2007, some four years before I tested. By that time, her BRCA status no longer mattered to her or her medical team.

It was too late for Koko to benefit from BRCA testing, but it is not too late for my brother, JP. Being the stubborn, bossy older sister type, I may just take a run at him again. Now that he has had pancreatitis, if he is BRCA positive his risk of pancreatic cancer is high. I should not be the only one in the Pritchard family who gets that damn scope down the belly.

Me and JP with Dad circa 1970.

Me and JP with Dad circa 1970.

Moving Right Along

Eighty degrees, bright sunshine, breakfast on the patio. Just another hot summer day in southern Arizona. James and I are off to Tucson to visit the pool and spa experts. Construction has begun on the new Casa Asbell. For the first time in quite a while I have little to say about hereditary breast and ovarian cancer issues. I expect to continue posting here now and again, but plan to spend more time blogging about new chapters in my world.

For those who would like to join me I can be found at Lee Asbell in Quail Creek http://www.leeasbellqc.wordpress.com.

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Willcox, AZ wine country. A brave new world for this enophile. Big hat, sunglasses, SPF 30 required.

 

 

On the Move

Yesterday, in the midst of the wreckage that was once our master suite, Jim and I packed up everything needed for a five month stay in a rental house while our new home is under construction. He handed me a photo.

“Remember this?”

In my hand was a snapshot taken of us in Spain in 2011 in the walled medieval town of LaGuardia. I’d added ridiculous captions to the photo that had to do with a private joke about underpants. The photo was inside a small box with a gift I’d given to Jim a few moments before they wheeled me away for yet another surgery almost exactly one year before.

Moving is horrific and wonderful. All day long we snipped at each other, arguing about tiny details, squabbling over where or how or when to do certain things. That photo put things in their true perspective. Jim and I have been through many difficult life experiences together. The petty bickering was merely background noise. Yes, moving sucks. But it sure beats where we were a year ago and both of us are grateful. Exciting new challenges and more bad jokes about underpants lie ahead for us.

Arizona here we come. Farewell Vancouver, Washington. We will miss you.

Goodbyes and Hellos

Sort, pack, sell, get stressed out, drink too much wine, rinse and repeat. That sums up my recent routine. In less than two weeks we will be out of our Pacific Northwest home of fourteen years and off to the Sonoran desert south of Tucson. Moving cross country is a big, fat, hairy deal thank you very much.

Last year at precisely this time I was about to have major surgery yet again. I would never have believed we would be about to embark on this new chapter. Such is life. Filled with surprises, good and bad.

One day in early 1999 when the concrete in the garage had just been poured, my then fiancée carved a small gift for me. I saw it again yesterday as I cleaned up after the whirlwind of a garage sale. My last name was not yet his, but I got a kick out of seeing our initials this way.

At this very moment we are enjoying a wicked good St. Angel triple cream Brie and one of the finest Chardonnays on the planet earth, Marcassin. The peak of gorgeous summer weather has arrived. I feel lucky even if all my stuff is stuck in a box for six months and the cats are crazy.

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The Angelina Effect: A Few More Thoughts

Only a short time after Angelina Jolie’s bombshell op-ed in the New York Times appeared, she lost her aunt to breast cancer at age 61. Her mother died from ovarian cancer at age 57. All three women in Angelina Jolie’s family have a defective BRCA1 gene, just like three of the women in my family. We know her pain.

In the comments, interviews and editorials since Ms. Jolie announced her choice to undergo what my docs simply call “the BRCA surgeries” there have been many who do not agree that lopping off healthy body parts to reduce cancer risk is a good thing. Of course it isn’t. It is an unfortunate reality that preventative surgery is the best of the limited weapons at the disposal of high risk patients. What really sucks is that all the choices are awful.

As I approach the fifteen year mark as a breast cancer survivor, I am profoundly grateful just to be here to complain about these issues. My relative with ovarian cancer has put up one hell of a fight for the last five years. I doubt she has five more. Many of the experts I have heard in the Angelina uproar say that those BRCA positive patients who witness close relatives suffer with cancer are more likely to choose prophylactic measures. No shit. Cancer is brutal and very, very ugly. No one likes to talk about that. Think losing your breasts is bad? Try the monster that is Stage IV breast cancer or advanced ovarian cancer on for size.

That is all for today’s rant.

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My Dad as a young man. He died of leukemia in 2004.

The Angie Gene

Talk about a PR windfall. Angelina Jolie, mega-movie star, humanitarian, celebrity mom and fiancée of an equally famous man has suddenly become the face of the BRCA gene world. And what a gorgeous face it is.

This is very good news. Of course it is pretty crappy news for Ms. Jolie and her family. The same crappy news women all over the world deal with each day. Difficult decisions, uncertainty and major life upheaval come with the knowledge of what it means to have this genetic disorder. I am sorry for Angie, but very glad she chose to share her story and I thank her for doing so in such a public way.

The airwaves are filled with Angelina and people everywhere are discussing her family history, cancer risk, choices and treatments. For all those people I have heard criticize or stand in judgement I would politely like to remind you that she did not have to say one word about this to anyone, ever. It could have remained private. Instead, she chose to tell the world her story.

Thank you Angelina Jolie for speaking out. It matters to women like me who face the thorny array of problems that come with being a BRCA mutant. It matters even more to all those who did not even have a clue this genetic order existed until you spoke up. Your candor will save lives.

The Angie gene. I have it too. And I will keep telling my story just as often as anyone will listen. I hope Angelina Jolie will do the same.

Downsizing. Ups and Downs.

Four weeks ago our home of fourteen years went on the market. Each day I vacuum, polish, scrub and Swiffer every inch of the 3,040 SF “fantastic single-level custom home” my realtor assures will sell at any moment. Until then I am a maid in a fancy hotel who readies the presidential suite and waits. Flowers and fresh fruit are all that remain visible on sparkling kitchen counters. Coffee maker, tea kettle or anything useful? Banished to the pantry. Odiferous bacon, heady garlic, oven-dirtying roasted chicken? Not on the menu. I lurk in the hallway each time the cats enter the laundry room. Every sign of their existence must be eliminated. If the house does not sell soon I will have to enter a rehab program for those obsessed with cleaning perfection.

My simultaneous mission is to sell off half our household without wrecking its ambience. My latest coup? The sale of a fabulous formal dining room set via eBay. Purchased in Hong Kong in 1986, this huge table is made from solid rosewood and is elaborately carved with wine grapes. A beautiful, expensive and unique Asian beauty. Hardly a garage sale item. Somehow I am not surprised this well-traveled table is about to head 3,000 miles across the country to its new home in Long Island, NY. The buyer was willing to pay as much for shipping as the table itself.

Many glasses have been raised over the years around that Hong Kong table. Fabulous meals consumed. Parties, birthdays and holidays celebrated. Memories, good and bad. Five years ago a gravely ill friend with a brain tumor destroyed one of the table’s custom handmade chair cushions in a New Year’s dinner party I would very much like to forget.

Downsizing means letting go and moving on. Along with the dining room table I bid farewell to an antique mahjong table, barstools, bookcases, artwork and more. My “mother of all garage sales” is coming as soon as the house sells. Putting a price on one’s treasures and bargaining with neighbors and strangers is liberating and difficult all at the same time.

Yesterday also marked my final visit to the medical tattoo artist who pronounced her handiwork on my reconstructed breasts complete. My downsized boobs and belly continue to settle and heal. A different sort of letting go of the past and moving forward.

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So long to an old friend.