BRIAR’S STORY: LIVING LIFE LIT UP!
“Each year over 190,000 women are diagnosed with breast cancer, and the National Cancer Institute reports that 5-10% have a hereditary component!”
Just over six years ago I would have read this information and thought, "how sad for those anonymous far-away people". Who knew that in December 2002 I would be diagnosed with breast cancer? Everything went mercifully but freakishly fast! On December 6 2002, the last night of Chanukah, I showed my doctor a suspicious lump. He bi-opsied it then-and-there feeling it looked suspicious. On Monday December 9, I found out that it was a malignant carcinoma. On Thursday I had a lumpectomy and by the following Monday, I was meeting with my oncologist trying to wrap my brain around this while making significant treatment decisions. I had a case of "Stage 1" ductile invasive carcinoma---breast cancer, which was very aggressive (they say that when you have breast cancer under the age of 50, it is often more aggressive). When I received my diagnosis of cancer I could barely breathe. My mind went to a time, when almost 30 years earlier, my best friend's mother was diagnosed with cancer. She lived for several years before succumbing to her illness, and it was devastating to watch her die bit by bit. I saw myself as my friend's mother. I felt as though I had been handed a death sentence and that a bolt of lightning would flash from the sky in a moment and snatch away my precious life; my life that I was absolutely not ready to give up!
And so I had entered the statistical ranks! While I was in the hospital for my lumpectomy, I was regaled with voluminous bundles of literature from the American Cancer Society and other concerned parties. Among the information was a fact sheet about BRCA. "Hmmm", I thought, "I think I heard about BRCA at a women's health fair a few years ago---and I don't think this is a good thing". It was at that Hadassah Women's Health seminar that I actually was shown how to do a breast self-exam---something I started doing religiously going forward which saved my life! That's how I found my tumor. Among the information on the BRCA Fact Sheet, was a mini questionnaire. It suggested that if you answer "yes" to three or more of the questions you might consider that there is a genetic link to your breast cancer. Do you have a parent, grandparent, or sibling who has had breast OR ovarian cancer? "Well...yes, my maternal grandmother died at a young age of ovarian cancer." Were you under the age of 50 at the time of diagnosis? "Yes, I am 42." Are you of Ashkenazy (Eastern European Jewish) descent? "Yes, I am."
So there I was, a few hours post-lumpectomy, reading this information, and my heart resumes pounding at a new rate of hysteria! Oh my God!! What if I have the crazy mutation that puts me at a 90% risk of having breast cancer in the future and 85% risk of developing ovarian cancer? (The statistics of the gene expressing itself are lower if you have not YET had breast or ovarian cancer---once you have had cancer, you are at higher risk for future occurences of new cancer. Your risk for "recurrence" remains statistically the same as anyone else.) No! This just couldn't be so. I mean, the only person that I knew of in my family's history who had cancer was my mother's mother. I have always been so healthy. I had my children at a young age, and breastfed forever---factors, they say, which lower the risk of having breast cancer! I have always been health conscious about my diet and love fruits and vegetables. No!
So what does anyone in this situation do (besides drink heavily or eat bon-bons?) You go to your family, friends, and physicians and start polling them on their opinions and what they think. Could I have the BRCA mutation? My oncologist, ironically, thought it was highly unlikely and that I shouldn't worry too much about "that". THAT turned out NOT to be good advice! My husband, parents, and gynecologist were of the school that you can't have too much information and it's what you DON'T know that'll kill you. So, my husband and I marched off to the City of Hope and met with a doctor who is a leader in the genetic studies about BRCA! He was warm and caring and spoke to us in terms we could understand and digest. What I came away with was the understanding that if I had this mutation, I would be like a time bomb waiting to go off. If I had the mutation and removed my ovaries, I would have almost 0% chance of having ovarian cancer in the future and it would reduce my chances of having breast cancer to a wopping 60%. I could DEFINITELY LIVE with early menopause! If I also removed my breast tissue, I would reduce my risk of having breast cancer in the future to almost 0%. This was harder to get my mind around, but I WOULD definitely live without my breasts if I could live my life out fully and not have cancer again! I knew I would have to do the blood test, and that if I was positive for the BRCA mutation, I would have a challenging road to walk, but it could give me a chance at living out my full life span. I knew that if I was BRCA positive, I would elect to have a double mastectomy and ooferectomy.
I chose to do the blood test at my gynecologist's office. I paid for the test with cash under an assumed name so that my health insurance would not be in the loop and wouldn't penalize me if I was positive for BRCA. Within a week of my lumpectomy, and before even starting chemo I went in for the blood draw. December 2002 was a LONG month. By New Year's Eve I had built up a healthy veneer of denial, and was still a few weeks away from starting chemotherapy. Life almost seemed normal and my husband and I planned a romantic evening out. At the lovely restaurant, over champagne and hors d'oeuvres, I noticed my husband was a little quiet and out of sorts. As I asked him what was bothering him, a chill ran through my body. I knew. I was positive for BRCA1. I didn't know if I would faint, vomit, or die on the spot. I did none of these. Remarkably I survived!
We broke the news to our parents. Now there was a bigger question at hand. Where did the mutation come from and what was the risk now to my three children, and what were the implications for my sisters, cousins, etc. I assumed that the mutation came from my mother and, in shock, she stepped up and got tested. She survived the two-week wait to find out that she too was positive for the BRCA mutation but not BRCA1, rather her mutation was BRCA2. Now our family was reeling from the shock that the mutation had lain embedded in my family's genetic coding on both sides. Immediately my father, his brothers, and my sisters got tested. I received the BRCA1 from Dad. My middle sister tested positive for BRCA1 & 2, gifts she inherited from both my parents, and my baby sister was negative, having no mutation.
We got word out to our family near and far. We had cousins reaching out to cousins out to cousins. We started hearing stories of how breast cancer had stricken other branches of our family. I had a distant cousin contact me and thank me for the information. She too found that she was positive for the BRCA mutation, but not from the side of the family that made us related, but from HER other side!
I started chemotherapy in February 2003 and finished in May. Those first few weeks, prior to starting my chemotherapy, were so lonely and frightening. I tried to find information on my own about breast cancer and BRCA mutations by looking through the internet at very late hours of the night, but it seemed that time on the web only plummeted me into deeper and darker despair. I would find all sorts of studies and articles about the likelihood that I would die. I soon realized that I had to back off of the internet and rely on my husband, family, friends, and community to keep my spirits up. I resolved that I would keep my eyes on the present and really appreciate every relationship and every breath I had. Sometimes this worked, sometimes not.
I made it to and through chemotherapy. Chemo was very aggressive for me, and I was very sick for several days after my treatments, and then, just as I was actually feeling “back to normal”....boom....another sickening blast. The hardest part of the chemo and the surgeries that would come, was supporting and processing with my children. My beautiful smart sparkly girl was 13, and my sweet brilliant boys were 11 and 5! My middle boy had the hardest time, and it was when he saw that I was well, 2 years later, that he really expressed how tough and painful the whole thing had been for him and needed some tender---and not-so-tender--- love and care by way of an amazing therapeutic boarding shcool!!! What do you tell children? How do you tell children? And how do you live day to day beyond the descriptions into the reality? One of the best moments we had was explaining how my hair would fall out. My wonderful husband and I explained that just like sometimes anti-biotics give you a tummy ache, the medicine I would be taking would make my hair fall out, but with both, the side-effects were signs that the strong medicines were working. We decided that before the medicine made my hair fall out, we would take matters into our own hands and have a head-shaving ceremony. My daughter was the interviewer, my husband was the shaver and one son took photos while the other videotaped. Over the course of all my treatments and surgeries we became very creative and adept at making lemonade from the lemons---until there just were no more lemons! There was also a lot of hugging, kissing, and lots of snuggling and open conversations.
I read many books of encouragement and support about cancer over this period. I met another mother my age in my pre-kindergarten-age son's class who was also undergoing treatment for cancer, who became my friend and we went to weekly groups at The Wellness Center. There were times I was scared, but I found support and community. My children's schools rallied around me and my family, as did the community at my synagogue. People organized schedules to bring us food, sit with me while I had my treatments, watch my children and even take them for the weekend when I was having chemo. I came to realize how previously, before cancer, I rarely let anyone take care of me. I rarely gave myself time and space for rest and relaxation. I noticed that there were some "perverse benefits" to this "cancer thing", and that I was learning some important life lessons! I was learning to smell flowers and watch clouds float, ever-shifting in the sky. I was appreciating every small moment! I was noticing how loved I was and how much I loved. I learned to look at my children and know that if I died, they would be okay and would always have me in their hearts. I became able to stare death in the face and know that one day death would win---one day, but not yet.
One month after completing chemotherapy I had my ovaries out; a simple procedure done on an outpatient basis. That night I was cooking dinner. A month later I had my double mastectomy and began breast reconstruction, a process that stretched out over a year and a half. During this time, my mother who had had an ooferectomy fifteen years earlier, decided to have her double mastectomy and breast reconstruction. My sister had her ovaries out and was uncertain about the mastectomy. After a year she found what she thought was a benign lump on her breast and decided it was a sign that she should go ahead with her prophylactic bilateral mastectomy. Unfortunately, pathology indicated that her benign lump was not benign after all, and she too, having cancer, had to undergo chemotherapy---three rounds---and all the worry and fatigue and general yuck of cancer!
I have learned that my daughter does not have the BRCA mutation. I must wait a little longer to find out if my boys have it or not. We do not know yet if my sister’s children have it. The BRCA genetic mutation is insidious. It is carried by both men and women. It may or may not express itself---Women affected by BRCA have a higher incidence of breast and ovarian cancer, and possibly colon cancer. Men with BRCA have a heightened incidence of breast and testicular cancer, and may also have a heightened incidence of colon cancer. BRCA is also found to be more prevalent amongst Jews of eastern European descent, although is also found in Scandinavian, Asian, and African American populations. The expression of this mutation may skip a generation or may show up as cancer at a very young age. It has little predictability and certainly no sense of fairness----I guess that's true of all cancer: not predictable and not fair!
It seems that once upon a time ago, Tay Sachs was unheard of---and now all Jewish parents-to-be are tested and they are able to make informed choices about becoming parents. I hope that as we become more educated and aware of BRCA and other genetic connections to cancer, as a community, it will likewise become a practice in the not-distant-future, that testing becomes the standard of care, like Tay-Sachs. We may not be able to counter the effects of this mutation...YET....but to have the information is to have power. Knowing whether or not you have the BRCA mutation, or any other genetic anomaly allows for choice and clarity.
In my family, because I chose to be aggressive about gathering as much information as I could, I was able to have a huge impact. Having been diagnosed with BRCA1 I chose to have surgeries which have allowed me to live my life fully and without stress. I have been able to contact so many branches in my family tree and alert people to the quiet threat that could be waiting to claim our lives. I have heard back from family members who have tested negative and others who have tested positive---all who have been grateful.
I wish I could stand on a mountain top and scream out to the world, "check yourself", "know your body", "be informed and be bold"! There are so many areas in life where we get little say. We don't get to know when the next big earthquake or tornado will come, we don't get to know if today we will be the victim of a crime, or if the next time we fly if that plane will be air safe. However, we do get to be aware, conscientious, and proactive. We can set an example for others that can make a positive difference for generations to come!
Six years have passed and my life has been forever altered. I have lovely perky breasts and no cancer and a passion for wellness and speaking out about what I have learned and making a difference for others. I am loud and proud! I often get phone calls from women who are just entering this scary and trying journey, and it is my privilege to let them know that life goes on, and they will prevail on their path. We all know that there are no assurances in life, and there's no way to know when and where our time to die will come, and until it is that time, what I have learned is that we have NOW. I was so afraid of the unknown and the images I had of having my body mutilated from the mastectomy, of being ruined sexually, of being so disgusting my husband would leave me, of doing it all only to have my life claimed by cancer. I now know that fear is the greatest cancer. I have had three friends die since I was diagnosed with cancer, and I know that there, but for the grace of God go I. However, I have had luck and good grace on my side, and my passion is for life and living life lit up--- My husband adores me and is always by my side. I no longer look at cancer statistics as I did a few years ago. I am not happy that I have this BRCA mutation, but I am happy if my story can make a difference for others and save even one life. I am fulfilled knowing that perhaps others will be motivated and inspired to explore the etiology of their cancer and be fact gatherers and proactive participants in their treatment. I know that I am able to participate in my children's lives, enjoy my husband, celebrate life's special moments, and delight in my health and wellbeing because I chose to pursue the unlikely and the unthinkable and take radical, decisive, life extending action---Life is great and there’s no time to waste a moment of it. I live...surviving cancer whole!
Briar Grossman, L.C.S.W.
Psychotherapist and Life Coach
Co-Founder of www.survivingcancerwhole.com
For more information about cancer, my story, to share your story, and/or to create personal groups to support you on your journey, please see my website.
Surviving Cancer Whole is a website where Chicken Soup For The Soul meets Facebook!