“You are in charge your health. You can find the keys to unlock the destiny of your fate and make choices to save your own life. “

I found my birth mother after I was diagnosed with breast cancer. My twin sister, Stephanie and I, were able to get her records after showing we needed them for health reasons. Yes, both of us sisters have the disease.

We soon learned that not only had our birth mother, Barbara, died of breast cancer, but so had her mother. Barbara had been living 40 minutes away from us all these years, and we didn’t know.

Our grandmother’s “reason for death” had been crossed out with a fat black pen, so that our parents would still adopt us. But that’s not all. Late last year, my longtime boyfriend died at age 44, of a heart condition. After being diagnosed in 2006, a year after Stephanie, I had become numb. Seeing what my sister went through, I thought I was ahead of the game.

It was not actually after my boyfriend’s death did I learn from my cancer experience and his death. It is only we that can save ourselves, only we can be our own advocates, only we can make personal choices that could save our own lives. No one can do this but us.

This is my story.

I still recall looking at my twin sister’s wig. I could only think, “Will I, too, be wearing that thing one day?” We had shared every other part of life so far, hey would this be any different?

I hoped not, but resolved to do whatever was necessary to prevent it.

October 2005, Stephanie was diagnosed with breast cancer at age 36. Like many women, she had felt a lump which was biopsied 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 5 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 since we were adopted, she should be tested for the BRCA1 gene. Of course at this time we had no idea what this was, or that the geneticist who discovered this gene, Mary-Claire King, was at the University of Washington. Steph was told this genetic mutation is relatively rare, occurring in only 5% of women. Most likely, she would test as negative for this gene. It was a month later when the results came back. They were positive. She had the BRCA1 gene and there was a 50/50 chance I also carried the same gene.

It had taken me a few months to get up the nerve to take that test. My mammogram and MRI 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 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 that would now share. That’s just how it was with us. I went with Steph to all of her appointments with the great medical staff at Swedish Hospital. I was there when she was feeling sick, tired and depressed.

During all of this, with the guidance from Stephanie’s genetic counselor, Robert Resta, we hired an investigator to help find our birth mother. We were now 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 made before to find our birth mother were failures. I had become so obsessed, I made up medical conditions I could not prove. 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. (This needs to change).

So now we finally had it! Stephanie with breast cancer and both of us diagnosed as having a mutation in our BRCA1 gene.

We sent a letter written by Stephanie’s genetic counselor and the results of her Myriad genetic test to the investigator who was located in Florida. She took the letter and test results to a Florida Judge and he signed the release we needed for our birth records to be unsealed.

We were adopted through the Catholic Welfare Bureau. The investigator took the release forms and in less than three weeks obtained the records with the file with history of our birth mother. This was a day we both will never forget. Steph and I read the letter he sent and all the information included over and over. We could not believe it. Our birth mother, Barbra Jajo, died in 2003 at age 58 in Enumclaw, Wash. Never could we have imagined she would have been living 40 minutes from us.

We had grown up in New Hampshire then moved first to Miami, next to LA, finally in 1999 settled in Seattle. We discovered our birth mother had grown up in Michigan, gave us up for adoption in Florida, and had also lived in California when 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 of not knowing.

Most disturbing was that our adoption files revealed 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’s 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 from breast cancer. We ordered her death certificate for $40 online, only to get the news we most feared. “Metastatic Breast Cancer” was the cause of her death. We contacted the close friend listed on her death certificate to see if we could learn more about her type of cancer and where she was treated. It turns out she was being treated at the same Cancer facility as Stephanie. Could this be possible? It was unimaginable that our search for our birth mother, which began at Swedish Hospital, would end up at Swedish.

As for her experience with cancer, Scary! That’s all I can say. She had four separate breast cancers. She chose lumpectomies instead of a mastectomy.

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 God’s hands now.” She died shortly after this. Our first picture of her ever was her radiation picture in which she was wearing the same gown in front of the same background as Steph’s radiation picture. How weird is that!

Steph was going through chemo, I had tested positive for BRCA1, and we find our birth mother died at 58 of breast cancer.

It turns out so did our grandmother at age 44, our great grandmother at a young age also died from cancer and our half-aunt had treatment for two separate breast cancers and is now a 15 year survivor. There was no doubt that the writing was on the wall for me and it was just a matter of time. I was so sure I would get cancer I took out a cancer insurance policy. 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 clear MRI when I scheduled my mastectomy for the beginning of 2007. At this time I received another MRI just to be sure there were no surprises before surgery.

The new MRI showed a small dark spot. After only 10 months, cancer reared its ugly head.

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, like my twin sister I had breast cancer and the count down on the two ticking time bombs had begun.

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 until 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 anthesia and the pain started to set in, 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 ahead without the fear of another breast cancer.

In February 2007, I began chemotherapy and exactly two weeks later, my sister’s old silly wig that I feared to 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 with a 40% risk for ovarian cancer. Sometimes I joke and say “One more surgery and I will be a guy.”

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

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 eventually save our own lives. It was the outstanding staff at Swedish Hospital that deserves the credit for this result. Words alone cannot convey our thanks.

We are still hanging onto the wig we both once wore — God help us if we might ever need to wear it again.

Since we have taken all the possible steps to improve those odds, I am hopeful we will live to eventually die from old age. I think we will just have a survival ceremony and burn the damn thing!

Kim

Article provided curtesy of Trusera

If you would like to help, share your Survivorship story, or your Co-survivor story and make a difference! Contact stacy@fightpink.org.