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.

 

 

 

 

 

 

 

 

 

 

Hereditary Cancer Research

Back in the dark ages some fourteen years ago when I was diagnosed with breast cancer, the oncologist had to rattle the cage of the pathologist to get the results of a test that is now considered routine. The test was for a proto-oncogene called Her2-neu. My tumor was positive for over-expressing this protein.

This was not good news. It meant my cancer was even more dangerous.

In 1998 a drug called Herceptin was in clinical trials to determine if the drug could improve outcomes in people that had this tumor type. Researchers also knew that positive Her2-neu status was another one of those pieces of the puzzle that often seemed to be present in women like me who developed breast cancer at a young age. At the time I received chemo, Herceptin was only available to those with metastatic disease. I had Stage IIB breast cancer and did not meet the criteria.

Not long after I finished chemo, Herceptin proved to be highly effective against Her2-neu positive tumors and became more widely available. This is the way drug research works. It is a long, expensive difficult road that is littered with failure.

Of couse 1998 was not really the dark ages. The point is, things change fast in cancer research and treatment. The two are inseparably linked. Back in 1998 I also did not know I carried a defective BRCA1 gene. Insurance considered the genetic testing “experimental” and would not pay the $3500 tab.

Herceptin and many drugs like it come to market only with the combined efforts of many groups, including patients. For BRCA-positive people, the PARP inhibitors show promise, but may never reach the finish line. Why? There are not enough women who qualify enrolled in clinical trials.

Do you know anyone with advanced breast cancer who is BRCA positive? There is a large Phase II clinical trial for PARP inhibitors going on. Participating could mean a breakthrough for those with hereditary BRCA cancers, as well as the wider cancer community. Of course there are no guarantees. This is how science works.

For more information please read this important blog post from Sue Friedman, the founder of FORCE.

http://facingourrisk.wordpress.com/2012/12/12/clinical-trials-for-hereditary-cancer-where-the-rubber-meets-the-road/

Life in the Cardiac ICU Waiting Room

New friends have entered my life and I do not know their names. Instead, I know all about the cardiac surgeries their relatives had in the last day or two. We wait together for our turn to enter the cardiac ICU unit for brief visits to loved ones. Volunteers ply us with free coffee, juice, information, conversation and reading material. They also keep some semblance of order when upset family members lose it.

The waiting room is reasonably large, but there is also a smaller private waiting room where medical professionals deliver news that is usually bad. I had my turn in the small room yesterday when they had to explain why my Mom had to return to surgery.

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After her initial surgery a blood clot developed inside her heart. Her cardiac function declined. They advised me there might be a need to add a balloon pump to help take the load off her heart. I left the small room and did what I usually do when I feel stressed. I ate. My burger might as well been wood chips. By mistake I’d bought a flavored water and it tasted like medicine.

It occurred to me this is how it must have felt for my Mom and my husband when I had to go back to surgery five times in seven days to try and save my reconstructed breasts. It must have been god awful.

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When I returned to the cardiac ICU the news was better. The second surgery went well. As soon as the blood clot was removed Mom’s ticker worked like a champ and nothing else was needed. My companions for the day, a stoic older gentlemen with two beefy adult sons in tow were not as lucky. His wife had been returned to surgery for a much more complex problem and had nearly died. The older gentleman carried his wife’s purse all day. Dressed in a camo baseball cap, flannel shirt and jeans, he made jokes about his man purse, but he held that purse close and did not let it go.

Today, the news was much better for both of us. Mom was wide awake, was able to sit in a chair and eat a bit of food. She was crabby. I wanted to laugh. There is still a long way to go before Mom is out of the woods, but things are moving forward nicely. My friend’s wife had improved. He was hoping the purse that held her dentures would be allowed to stay with her.

Today I found good espresso, finally. After two days of wimpy waiting room coffee and insipid hotel coffee, there was a double shot of black goodness in my hand. Everything is going to be just fine.

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BRCA testing: The next generation, Adventures in cardiac surgery

So, yesterday while we waited for my Mom to have her cardiac catheterization procedure I kept her entertained with my new iPad. She tolerates computers but is not a tech aficionado. An email popped up and I stood next to her bed so she could see the good news.

My oldest niece got her BRCA test results back yesterday. She is negative! Of course this does not mean that she can forget about cancer since both sides of her family tree are full of it, but it is very good news indeed. A bright spot in a long day.

Tired and grimy after a very long overnight series of flights, I waited while the docs trolled around inside Mom’s heart looking at her arteries and valves. Afterward the doctor told me she is in excellent shape, other than her leaky mitral valve. He said “Once we repair her mitral valve she will be heading for triple digits.” More good news.

In about an hour surgery will begin. So far I am very pleased with the nice folks at Rochester General. I had a wicked good Greek salad for lunch, got free coffee, a place to park my luggage, a helpful series of people who kept me from getting lost and the hospital security guy drove me to my hotel. I am amazed.

Off to the Hospital and this is NOT about me

Forget about that stupid Mayan calendar end of the world nonsense. The year 2012 will go down in my family history as the one where we all took turns having surgery. This time it is Mom who has to go under the knife.

At our annual Labor Day gathering this year we asked Mom how she would like to celebrate her upcoming 80th birthday. In typical Mom fashion she wanted no fuss, nothing special. Looks like she will be spending it at home recovering from heart surgery.

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Mom and me. Sister Anne nearby. August 1963.

I’m packing for the red eye that will take me to the East Coast tonight, happy that I can spend a few days with her, sad that she has to have doctors muck around with her ticker. Mom is one tough cookie and I am certain she will come through this with flying colors.

2009. Mom on the farm.

2009. Mom on the farm.

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.