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.

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.

Moving On

Blogging about the world of BRCA decisions, surgeries and recovery has been good for me. Now it is time for a new chapter in life, in more ways than one.

Recently my spouse and I made a huge decision. We are going to relocate to Green Valley, Arizona. Jim will continue to work for a few more years, but all he needs is to be close to an airport now that his accounts are spread out all over the country. We are going to build a new home in a community that should suit us nicely today and in retirement. After fourteen years in our present home and decades in the Pacific Northwest it is time for a change.

Change is hard even when it is good.

The house I live has been my home for longer than anywhere I have ever lived. I will miss this beautiful place. Last week our handyman discovered the crawl space under the house had been invaded by raccoons who destroyed virtually all of the insulation. Just to keep the party lively, a couple of squirrels and some mice joined in to add to the mess. Guys in hazmat suits will invade my crawl space for three days to repair the damage, remove the carcasses and piles of poop. Oy!

Today we bid farewell to the oldest of our three cats. We have known for some time this was coming. Not that it makes things any easier. Just less of a shock. Another big change. I am crying as I write this.

Time to move on.

I will see the medical tattoo artist on the 24th and that will be the very last step in the lengthy process of breast reconstruction. No doctors or other medical types for a while. That is a very welcome change indeed.

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Count Catula loved to cook himself in front of the fire.

Nipple Tats and Old Cats

The icing on the cake is how my plastic surgeon described it. Nipple/areola tattooing, that is. As I drove to the medical tattoo artist’s office, it did not feel at all like a moment of celebration or even an opportunity to mark the end of a tumultuous chapter. It has been 14 months since my initial bilateral mastectomy/reconstruction. Today was just another dang medical procedure that I have not been looking forward to one bit. The tattoo artist, one more stranger who wanted to mess with my mangled personal anatomy.

What a pissy attitude, I told myself. Be glad you have decent health insurance and are alive and cancer free. Put a sock in it and go finish what you started, I thought as I waited.

So, I did just that.

No offense to those who love their ink, but I really do not like tattoos. Garish tats and piercings other than normal pierced ears (not those barbaric plugs) make me want to look away. I find them disfiguring. As someone who has been carved up from stem to stern, I have a strong appreciation for Mother Nature’s work and think people should not mess with it too much. Merely my humble opinion.

What I was really thinking about while the tattoo artist’s needle buzzed in my ear was my old geezer cat, Count Catula. We had yet another vet trip this morning. For the last day or so he’s been clawing at his mouth. Sunday night he scarfed down his dinner but puked it right back up a minute later. Not at all the typical kind of barfing he does on a regular basis. His weight continues to decline and his once silky champagne colored fur is drab and clumpy. He will no longer tolerate me combing his scrawny body. So be it.

I let the tattoo artist work her magic, feeling oddly disinterested in making important decisions like size, shape and color. In passing, I asked her if she could fix something that has bugged me for nearly fifteen years. A reminder that I had extensive radiation treatment for breast cancer even though I no longer have those breasts. Four permanent marks that radiation therapists made on my skin to line up the machine that zapped the cancer. Only in my case, three of those marks disappeared in my surgical adventures and all I was left with was the biggest, ugliest most prominent blob of bluish ink that anyone could see if they looked.

When she was done I had to admit that despite the skin being all raw and angry, I could see a more normal looking appearance. That is what medical tattooing is all about. The removal of that annoying radiation tattoo was a bonus.

It will be a week or so before the top layer of skin sloughs off and I can really see what these new nips look like. I’m in no hurry.

Count Catula is sleeping soundly in my chair in the family room where he’s been for nearly six hours. I am in no hurry for the vet to call with test results.

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Goodbye Baby-Poop Brown Recliner

Today I said goodbye to the motorized recliner that helped me through last year’s BRCA surgeries. No tears were shed. I hated that thing. My neighbor was happy to purchase the chair at a bargain price. He is having hip replacement surgery soon. I wished him luck and waved farewell to the chair as it headed down the driveway.

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So long my friend

Now, if I could just get the hospital to fix their billing error from more than a year ago, my life would be complete.

 

 

 

Sisterhood of the Traveling Pajamas

On my 40th birthday I had an over-the-top party where we served 40 wines and 40 cheeses. Included in the selection of wines were a few that were less than stellar to represent the years that we all have occasionally. You know, the ones that suck dog weenies. As I welcome 2013, I’d like to take a moment and say farewell to the surreal year that was 2012.

Armed with sock monkey pajamas and meditation music I entered the hospital in January 2012 for what would be the first of seven surgeries to permanently reduce my risk of more cancer. While I do not regret my decisions, the process proved far more challenging than anticipated.

Sock monkey jammies.

Sock monkey jammies.

While I was in the hospital I learned my sister had tested positive for the same BRCA1 mutation that caused my early-onset breast cancer at age 36. Her oncologist told her she’d been incredibly lucky to reach her early 50’s free from cancer. Her turn at the same series of surgeries would soon follow. I sent her a care package of items that included these lovely oversized p.j.’s and told her to burn them when she was done. I had no intention of donning them ever again.

Wisely, my sister did not destroy the surgery pajamas.

A few weeks ago, just to cap off the surgical adventures of 2012, my mother decided that her two daughters should not have all the fun and found herself having open heart surgery. Just to scare the crap out of me she developed a blood clot inside her heart and had to return for a second surgery. It was Mom’s turn for the sock monkey pajamas.

Mom models the look for 2012.

Mom models the look for 2012.

In case you are wondering, she is holding a calendar from my vet that includes my cat, the lovely Miss Bubble. I cropped the rest of the photo so she would not shoot me for showing the world her post-surgery beauty.

What is joyful about saying sayonara to 2012 is that all three of us who have worn the pajamas this year are doing quite well. We will move on with our lives and while there will always be some scars, both mental and physical, the events of 2012 are almost in the rear view mirror and that is a very fine feeling indeed. Sadly, there are others in our circle who have not fared as well. We hope that 2013 will be less bumpy for all of those we love and that the sock monkey pajamas can be permanently retired.

 

 

 

 

 

 

 

 

 

 

BRCA Surgeries and Christmas Lights

Tis the season to be ticked off, fa la la la.

I like holiday preparations for the most part, but probably that is because I let most of the insanity blow right by me. The mall is no longer my scene. One click on Amazon delivers plenty of joy. Each year though, it does seem that there is a single sticking point. Outdoor lights.

There are some skills in life I will never possess. These include how to read a road map, walk in high-heels or do arithmetic in my head. Irrelevant. I get by thanks to a GPS, nice flats and a calculator. Why do a few stupid trees and bushes that need lights always seem to cause friction between my beloved and I? It’s simple. I do not understand electrical plugs, extension cords, timers, switches or any of that crap and I never will.

According to Albert Einstein, insanity is doing the same thing over and over again and expecting different results. I must be certifiable. Somehow I always expect this will be the year I do a better job with the lights and I won’t be so bitchy. Yeah, right.

While I was fuming over a set of net lights that were half burned out, it occurred to me that last year at this time I was lost in a sea of confusing decisions related to the BRCA surgeries. I had little interest in the holidays. Jim’s Dad was close to the end. He passed away just before Christmas. There was not much to celebrate.

This year, I’m nearly recovered from the last of those surgeries and feel pretty good. Not perfect, but well enough that crawling around a fountain to plug in some stupid cords for the lights was no big deal.

The lights look great. Jim says I look great too. So much for our annual Christmas spat.

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In the dark, my lights are perfect.