Kim: BRCA1 and overcoming unimaginable heartache

OUR STORY: WHAT YOU DON’T KNOW CAN KILL YOU!!!

Written by Kim Lavarello

I still recall looking at my twin sister’s wig, retired to it's box, after her hair had finally reached a length where she was comfortable being seen without it.  All I could think was, "will I too be wearing that thing one day?" We had shared every other part of life so far, why would this be any different?  I hoped not, but resolved to do whatever was necessary to prevent it.

It was October 2005 when Stephanie was first diagnosed with breast cancer at age 36. Like many women, she had felt a lump and was diagnosed about a month later. Her cancer was estrogen negative, the aggressive kind, and she quickly had a lumpectomy.

Chemotherapy seemed to take forever; at least five months and then radiation. Her Radiologist, Dr. Astrid Morris, had suggested due to Steph's age, the type of cancer and with no family medical history available,( having been  adopted) that she should be tested for the BRCA1 gene.

Of course at this time we had no idea what this was and she was told this is relatively rare, occurring in only 5% of women.  Most likely, she would test  negative. It was a month later when the results came back. It was positive. She had the BRCA1 gene and there was a 50/50 chance I carried it as well.

It had taken me a few months to get up the nerve to take the test. The mammogram and MRI I had taken were fine so I felt safe, at least for now. Did I want to know? Maybe I could just continue to get monitored instead. No! I couldn’t do it I needed to know, and to take the necessary actions if my risk profile was increased.

In the beginning of 2006 and I, like my sister, tested positive. This was probably one of the hardest times of this whole ordeal. I knew now what the real odds were, as well as every ailment and symptom experienced by my sister and I would now share.  That's just how it was with us.

During all of this, with the guidance from Stephanie’s genetic doctor, Dr Robert Resta and counselor we decided to hire an investigator to help find our birth mother. We were even more curious to learn how our birth mother was doing. Did we have siblings? Aunts? What was our family history like?

The attempts I had previously made to find our birth mother were failures.  At one point I had become so obsessed, I even made up medical conditions I could not prove to get our birth records. In the state of Florida, where we were born in 1969, the courts had ruled it illegal to release any adoption records to the adoptee with out proven medical urgency.

So now we had it! Stephanie has breast cancer and we have both been diagnosed with the BRCA1 gene. We sent a letter written from Stephanie’s genetic doctor and her Myriad genetic test to the investigator, located in Florida. She took the letter and test results to a Florida Judge and he signed the release we needed to get our birth records unsealed.

We had been adopted through the Catholic Welfare Bureau.  This part I had already learned  from my previous researches. The investigator took the release forms there and in less than 3 weeks obtained the records with the file with all of the known history of our birth mother history. This is a day we both will never forget.

Steph and I read the letter he sent and all of the information contained over and over again.  We could not believe it. Our birth Mother Barbra Jajo died in 2003 at age 58 in Enumclaw, WA.  Never could we have imagined she would have been living 40 minutes from us.

We had grown up in New Hampshire, attended college in New York then moved first to Miami, next to LA,and  finally in 1999 settled in Seattle.  We discovered our birth mother had grown up in Michigan, and had given us up for adoption in Florida. She had also lived in California and she was about our age prior to moving to Enumclaw. It’s so unreal I still think about it.  Could I have walked past her at some point and possibly spoken to her?  It’s weird to think about after all these years.

Most disturbing, was that our adoption files revealed that our Grandmother died of breast cancer, yet this had been crossed out with a black pen so our adoptive parents would never know. My guess is this revelation might be considered to have lessened our chances for adoption.

Should we have known this?  Would it have made a difference had we known our birth family health history? Why did our birth mother not try and find us, her twin daughters she gave up for adoption all those years ago and let us know what could someday be our fate?

Our big question was "How did she die?" We hoped to God it was not breast cancer. We ordered her death certificate for $40.00 online only to get the news we had hoped not to learn: Metastatic Breast cancer, that’s how she died.  We contacted the person on her death certificate to see if we could learn more about her type of cancer and where she was treated.

Turns out she was being treated at the same Cancer facility as Stephanie.  Could this be possible? It was unimaginable to predict that our search of our birth mother which began at Swedish would end at Swedish!

We requested to see our birth Mother’s medical records. With the help of her doctors we were able with the social worker look over all her medical history.  Scary! That’s all I can say. She had four separate breast cancers.  She chose lumpectomies instead of a mastectomy.  The first picture we saw of her, was her radiation picture with the same background and gown as Stephs radiation picture, how weird is that?

She was advised to do chemotherapy, but refused. She halted the radiation therapy, and wrote a long letter to the doctors that basically said “it was in Gods hands now”. I as my sister cried after reading this. She died shortly after.

Steph was going through Chemo, I had tested positive for BRCA1, and our birth mother died at 58 of breast cancer. It turns out so did our grandmother who died at 44, our great grandmother died at 39 from cancer and our ½ Aunt had two separate breast cancers and is now a 15 year survivor.

There was no doubt that the writing was on the wall for me, it was just a matter of time. I was so sure I would get cancer I took out a cancer insurance policy with Aflac. I grew to almost hate my boobs. I felt like I had these ticking time bombs on my chest that were going to eventually grow little tumors and kill me.

So I decided to kill them first.  It was November 2006, ten months after my MRI when I scheduled my mastectomy for the beginning of 2007. At this time I received another MRI just to be sure everything was clean before surgery.

After only 10 months, cancer reared it's ugly head. The MRI showed a small dark spot that turned out to be cancer.

It was like I had become numb. Seeing what my sister had gone through and learning all the risks I thought I was ahead of the game. But I like my twin sister I had breast cancer and the count down on the two ticking time bombs had begun. How could this be happening?

Once again I became desperate.  After my diagnosis every second seemed like more time for my tumor to grow.  Due to scheduling they could not get me in for Surgery till the beginning of January 2007. This was way too long for me to bear.  I cried and begged the scheduling nurse to get me in sooner. On December 28th I had a bilateral mastectomy.

When I woke up from Anesthesia and the pain started to set in like two burning irons on my chest, relief was my only thought.  I had detached myself a long time ago from having boobs and I just wanted my life. Even after the bandages were removed and I had seen the scars on my flat chest, I still felt no loss.  I saw only  a long happy healthy life without the fear of another breast cancer.

Even my love Igor who helped remove the bandages the first time said after seeing me….you know I think I love you even more now. (thank you Igor for your unconditional love!)

In February 2007 I began chemotherapy and exactly 2 weeks later, my sister’s old silly wig that I feared, I too, would wear one day was now on my head. During this time Stephanie had also gone in for a bilateral mastectomy and has had a successful reconstruction.

Both my sister and I opted to have hysterectomies knowing we were at 40% risk for ovarian cancer.Sometimes I joke and say “one more surgery I will be a guy.

We have since contacted our half sister. She is 34 married with a son living in Illinois. She is aware of her risk and is looking into getting tested. We also have been in contact with our Aunt who is a 15 year survivor. She calls to check up with us and we have formed an amazing bond.

It is now September 2007 as I write our story and not a day passes that I don’t pause to remember how lucky we were to have learned so much and been so proactive as to save our lives.

We are still hanging on to the wig we both once wore, just in case we might ever need to wear it again.  Since we have taken all the possible steps to improve those odds, I am confident we will live to eventually die from old age. I think we will just have a survival ceremony and burn the damn thing.

Kim Lavarello

At the end of October 2007 with the help of my Love Igor Bazdyrev I hosted a fundraiser for the Swedish mobile mammography program which helps less fortunate women in rural areas or who do not have money get screened and treated. This was also as thanks for their help in assisting us through our journey. It was a great success! I was happy and my hair was starting to grow back.

The day after the event my boyfriend of 6 years passed away at the age of 44 from his heart condition (just  6 months after my boss passed away of his heart condition 58).

I ask myself often why this all has happened to me all at once in 2007. I lost my boobs my boss and my boyfriend;  one after the other. Was there a reason for all of this other than sad misfortune?

There is a reason for everything I suppose, I am sure of this. I am strong now as it has been 2 years. I have been running my belated boss’s business and I am spreading the awareness and need for early diagnosis on genetic diseases as I have and as my boss and boyfriend had.

I recall the days Igor my boss (Vince) and I used to have coffee talk while I was going through chemo at this coffee shop. There was an old trunk being used as a coffee table. I used to tell them “If I do not make it and pass away I  want all my special things that symbolize my life and my ashes to go in a trunk like this one”.

They used to laugh and say “We are the ones with heart conditions” I would say did you forget I have cancer and we would all just laugh. Who knew shortly after this they both would be gone and I would still be here. I still cannot believe it! Well I bought an old trunk just like the one at the coffee shop and I put all their special things in it. I know If they could see / hear me they would be laughing.

In February 2009 I completely completed my reconstruction and I have to say I like my new fake boobs better then my old ones (minus the scars). I am presently having them tattooed with art.

I love life and the fact I am still alive to live it as it has taken so many tears and strength to feel this way. I am passionate about sharing my story in hopes one day it will help guide young women and others in my situation and perhaps even save a life.

…….Thus is Life!
Kim Lavarello

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