A Life Remembered And A Dream Fulfilled

This has been an incredibly emotional and monumental week. Being a writer, there is one thing I am driven to do when my head and heart feel like they are going to simultaneously explode. For better or for worse (and I really hope it is for the better), I write. So, I broke down some of the extreme feelings that I have had over this past week into two categories and tried to make some sense out of them. I also tried to find the lessons in what I've experienced and would like to share some of my epiphanies/“ah-hah" moments with you:

1) 47.

This week, I got older. At least the date on the calendar told me I did. This milestone represented more than just adding another wrinkle to my forehead. It represented an appreciation for LIFE and its many blessings, in a way that has been more intense and significant than I've ever felt before.

My dad’s sister’s name was Margie. She was like a mother and a big sister to me. Margie lived for 47 years. That’s it. She had two boys, ages 10 and 12, and a loving husband, when that SHITHEAD cancer took her away from them, from all of us. I now know and have felt exactly how long  or short 47 years is. I know that it feels like 47 years is not enough time; that there is much more that I want to do, more love that I have to give and more that I want to see and experience. I know Margie felt the same way because she told me. I have prayed for 47 years. I prayed that the SHITHEAD cancer would STAY OUT of my body; of my breasts and ovaries, where it viciously , relentlessly attacked my beloved aunt, despite her efforts to fight it off; and I have prayed that I would be able to live to see my children’s Bar and Bat Mitzvahs. My aunt didn’t get to do that. She died a week before her oldest son’s Bar Mitzvah. My sweet, kind, funny, witty, loving aunt, who I loved with all my heart and I miss more and more as I get older, and with a heated intensity this year, was given 47 years.

On my 47^th birthday, 19 years after the last time I held Margie’s hand so tightly, not ever, ever wanting to let her go…I get to live. I live for me and I live for Margie.  She is forever and always in my heart.

2) Writing.

Writing for me is like breathing. It is not really a choice. Whether it is a blessing or a curse, there is a never-ending flow of commentary bustling through my brain, which usually starts from an intense feeling that I have about something, from the very mundane to the very complex. I am a processor and an analyzer (sometimes to a fault). I try to let things “just be.” I practice yoga and focus on staying present. Sometimes I can but sometimes, the words jumbled in my brain just have get out, and need to be written down. I have been this way since I was little, always keeping a journal, and loving to write stories and book reports, especially when  asked to explore my very favorite question in the whole wide world: “Why?”

This week, I reached a life-long writing goal. I finished the book I have been working on for the past several years. 64,640 words. Done. This was monumental for me because I have battled with this book. I have written it and rewritten it, what feels like 17 zillion times. I have loved it and despised it. I have been obsessed with it and have been incredibly sick of thinking about it and hearing myself talk about it. I have told myself the following countless times: “YOU CAN’T, YOU WON’T.” I have battled the voices inside my head, “No one really cares what you have to say, there are way too many books for moms, what if no one buys it, what if no one wants to publish it, who are you to write this book?” Yep, I have truly spent way too many hours in the trenches with these voices. But I didn’t stop battling, and what I have realized over the past year is that I was giving those voices way too much power and allowing them to suck up way too much of my time and energy. The only way I was going to finish this book was to dig down deep and find the strength to tell those voices to “SHUT THE F UP!” And the voice that overrode the others and gave me the strength to see the book to completion (combined with the love, support and encouragement of friends and family) was a very simple, steady, clear voice that said, “Write the book. Do the work. Don’t give up. You. Can. Do. It.”

Do I know if a publisher will pick it up? No. Do I know that I will self publish if no one does? Yes. Do I know if anyone will read/buy the book? No. Do I believe in my heart of hearts that this book will be helpful and instrumental to moms who are trying to take care of themselves while taking care of their families? Yes. Do I feel grateful to all of those who supported and believed in me throughout this process especially during times when I did not believe in myself? Beyond grateful.

47. Margie.  Life.

Writing. A Dream Fulfilled.

Gratitude.

Dodging the Cancer Bullet

With Angelina Jolie’s recent disclosure of her decision to have a double mastectomy due to her discovery that she carries the BRCA 1 gene mutation, many women may be taking a closer look at their genetic history. I uncovered mine several years ago as I sought to trace the trail of breast and ovarian cancer, which killed my paternal aunt at the age of 47, two great aunts and had struck two cousins, who are currently survivors. I made a phone call to a cousin (who was diagnosed with breast cancer at the age of 30), and we discussed our lineage and how this gene mutation seemed to have been passed down through the generations on our paternal side of the family. I hung up the phone and concluded that if we were right, then that gene mutation could have also landed…in me. As a wife and a mother of four children, two daughters and two sons, I knew I wanted and needed some concrete answers.

I called a genetic counselor and we talked at length about the cancer present in my family. She explained that because I am of Ashkenazi Jewish decent, my risk of carrying the BRCA1 or the BRCA2 gene mutation is five times higher than that of the general population, and 60% of women who do carry the BRCA 1 or 2 gene mutation develop breast cancer. She also mentioned that it might make sense to talk with my father about being tested because this gene mutation would have come from his lineage and it would be helpful to know whether or not he was a carrier, whereby determining if my sister and I were truly at risk. My immediate thought was, “My dad, undergo genetic testing to find out if he passed a breast cancer gene mutation to his daughters when he had recently buried his beloved 47-year-old baby sister who died from this disease— how in the world can I ask him to do that?!”

But I did—and without hesitation, he said that he said he would do this for me and for my sister (a mother of two daughters), who was more ambivalent about undergoing this process. Soon after, my dad and I met with the genetic counselor, and it was determined that he would have the blood test to find out if he carried either of the BRCA gene mutations.

I left the office and he went to the lab for the test.  We were told we should expect a call in about four weeks.  I worried—for myself and for my sister. I made a plan that I would be proactive and have a mastectomy and a hysterectomy if I carried the gene. I was determined to stay ahead of the bullet.

A little over a month later, my dad got the call that the results were back from the lab but that no results, positive or negative, would ever be given over the phone.  The next day, my mom, my dad, my sister and I sat down in the counselor’s office and the counselor divulged the results to my father,

“You have the BRCA 1 gene mutation.”

“There is a 50/50 chance that each of your daughters could have it.”

My mom cried. My sister and I were in shock.

As we all walked slowly out of the office, my dad mumbled, “I’m sorry.” “It’s not your fault, dad,” was all I could say as my heart pounded so hard I thought it would jump out of my chest.

We stopped at the front desk to schedule a date for my sister and I to have our blood test. “Is there any way we could have it done now,” I asked as my hands shook and my mind raced. “I can take you and your sister back one at a time in 15 minutes, does that work?” “Yes,” I said without even looking to my sister for approval. She hadn’t said a word.

We left our blood samples and left the office feeling completely depleted.  I glanced over at the University of Minnesota hospital where my paternal aunt, who was not much older than I was now, had taken her last painful breath, leaving her two young sons motherless and her husband a widower. The feeling of pain and loss resurfaced, and was now mixed with terror.

Three weeks later, we got the call to come in for the results. I got to the office and my sister and her husband were at the desk. “They can’t see us together, we have to go in one at a time,” she said to me in almost a whisper. “Okay, well David (my husband) isn’t here yet so you go first,” I told her.

It was fast. She was in and out of the consultation room in less than five minutes. She walked over to me as I paced the waiting room.  She looked at me, but kept her eyes slightly averted from mine, and she shook her head, “I don’t have it.” “Oh thank g-d,” I said as I hugged her. But she still couldn’t look me in the eyes.

I knew why.

Still no sign of my husband. Both my sister and brother-in-law offered to go in with me. “No, I am okay.” I couldn’t wait another second so the front desk person escorted me to the tiny consultation room and I waited for the counselor.

“All I can say is that you two are very lucky,” she said as she walked into the room and took a seat across from me. “I often see cases where the gene gets passed down to one daughter and not the other/s but I rarely see cases where none of the children inherit the gene mutation from a parent who has it.”

“So I don’t have the BRCA 1 gene either?”

“No, you don’t.”

I don’t remember what I said to her. Maybe I hugged her. I came rushing out of the room to find my husband right outside the door on the verge of tears. “You gave me the wrong address. Are you okay,” he asked eagerly. I told him the news and when we got out to the waiting room, my sister was not sure what to make of our teary eyes. “I don’t have it either,” I assured her.  As we embraced each other, we fully exhaled, as we had not done for over a month. We immediately called our parents who were out of town and anxiously awaiting our call.

“I prayed and prayed for this, I told g-d that nothing else mattered,” my father said, his voice quivering with emotion.

Since this ordeal, several of my close friends have been diagnosed with breast cancer. Some have lost their breasts and their ovaries to this horrible disease, and this week I attended a funeral for a friend (a mother, a wife and a daughter), in her early 50s, who battled breast cancer for 20 years. I have other friends who have tested positive for the BRCA gene mutation.  Some of them, like Angelina Jolie, have made changes to their bodies to try to increase their odds, and some have chosen not to and are being proactive by having frequent mammograms.

It is essential that if there is a history of breast and/or ovarian cancer in your family, especially if you are of Ashkenazi Jewish decent, you must not be afraid to ask questions, and dig into your family’s health history.  Contrary to an old belief (one that even my OB told me many years ago), that breast cancer can only be “passed on” through the mother’s side of the family. Well, as we know now, this could not be further from the truth.  Men can carry this gene mutation, and although their risk of breast (yes, men can get breast cancer) and prostate cancer is still relatively low, early detection is key for them as well. Furthermore, fathers can pass this the gene mutation to their daughters, putting them at a much higher risk of developing breast and/or ovarian cancer.

Whether you see a pattern in your father’s, mother’s or spouse’s side of the family, do not be afraid to ask your loved ones to be tested so that everyone in the family can be better equipped to protect themselves from the cancer bullet and alert any offspring who may need to be tested. And please do not let fear stop you from being tested yourself.

This information could be a matter of life and death.