We have here a great interview with Jamie Wright, who lost her mother to cancer about four years ago while, in the same timespan, she found out that both she and her sister have the BRCA2 gene mutation, which increases their risk of breast and ovarian cancer. Both Jaime and her sister have undergone double mastectomies to try to reduce their risk of the same illness that killed their mother. They have also started a charity, Lolly’s Locks, which helps cancer patients who’ve lost their hair look and feel their best by donating beautiful, high-quality wigs at no cost to patients. Here is our in-depth talk with Jamie about losing a parent to cancer, being a new mom newly divorced, and undergoing genetic testing and its consequences:
What sort of advice do you have about getting certain genetic tests done in advance?
Don’t wait for your doctor to bring up the notion of genetic testing! If you have a family history of cancer that worries you, be proactive and ask if it if genetic testing is something you should consider. If you do decide that you want to move forward with testing, seek out and make an appointment with a certified genetic counselor, who can help you further in making an informed decision.
Tell us about Lolly’s Locks…
Lolly’s Locks is a nonprofit organization that provides high-quality wigs to economically disadvantaged adult cancer patients that cannot otherwise afford them. Our goal is to supply patients with wigs that actually look and feel as close to their pre-cancer hair as possible, and that will last.
My family started the organization as a way to channel our grief after we lost my mom. It is a true love-letter to her, as her wig helped to empower her to take control over how others saw her, and how she saw and felt about herself, when her life was otherwise spiraling out of control. She was shocked and extremely upset when she learned that quality wigs can cost thousands of dollars, and are often not covered by insurance – or subject to loopholes that make it nearly impossible for patients to take advantage of coverage.
Ours is a mission about taking control during cancer treatment. Bald can certainly be beautiful, but it can also come with the stigma of illness attached. Whether a cancer patient wants to embrace being bald should be their choice, and they should not be priced out of the option of looking as much like themselves as possible.
I am proud to share that, as of this writing, Lolly’s Locks has granted over 475 wigs to cancer patients in 47 states!
Although you have not personally had a cancer diagnosis, you have experienced so much of what it can bring onto a family. What words of advice can you give to mothers who may be separated or divorced who find out they have cancer?
As I never experienced a cancer diagnosis, I cannot speak to this question in a meaningful way. I did, however, undergo a preventative double mastectomy and reconstruction only a month after my separation. Navigating my newly single status during this time was especially difficult because, for roughly the last ten years, my ex-husband had been my caretaker and it is very difficult to just turn that switch off. It is not surprising then, that he was the first person I asked for after I woke up in recovery, and he wound up helping me through some of my most painful post-op moments despite our separation.
In hindsight, I think my going through such a serious surgery, and the fact that I was so weak and vulnerable for several weeks gave both of us some perspective, and helped temper our anger and hurt feelings. It also highlighted a very stark, if unspoken, reality, at least for me: my BRCA mutation and the early loss of my mom to a related cancer has made me seriously try to come to terms with the prospect of my mortality before I am ready, and when my kids may still need me. I think this has made me hyper-sensitive to building a solid co-parenting relationship with my ex that comes across as a united front to our kids. To this end, we rarely nitpick one another’s parenting differences, and we try very hard to stay on the same page where the big parenting goals are concerned. We also try to deliver consistent messages to our kids, and we each make a concerted effort to say and send positive messages about the other in our children.
I want to be clear: none of this is easy, and my ex and I are certainly not perfect. We absolutely bicker- although I am proud to say that I cannot remember the last time it was in front of our kids- and sometimes, despite my best efforts not to sweat the small stuff, I find it hard to let go of my own way in the heat of the moment. The saving grace for us has been that we have both been willing and able to get past such setbacks fairly quickly, and we rarely harp on each other for past wrongs, real, or perceived.
What can a woman do to boost her confidence through cancer treatments?
I started and run Lolly’s Locks because I believe there is a connection between looking good and feeling well. There is such a sense of empowerment that comes with feeling like the best version of one’s self, whatever that may be at a given time. Feeling beautiful and confident is such a personal, subjective thing, and everyone has their own way of tapping into what makes them feel that way.
It may mean finding the most realistic, comfortable wig possible, or it may mean embracing baldness but finding a great brow pencil or even tattoo artists to help with disappearing brows. I love to read stories of cancer patients who found ways to take control of something about their appearance that was taken or altered by their disease: for instance, women who decorate their bald heads with henna, or their scars with tattooed works of art.
Inward beauty, I think, comes largely from finding a sense of peace. When my mom was sick, she discovered a love for healing touch, and I know a lot of other patients who rely on Reiki or mediation. I have also seen many patients find a real sense of empowerment within the community of cancer patients and advocates. When patients connect with other patients they are able to have a wonderful network of people who know firsthand what they are going through, and that support system and emotional outlet is so good for the soul. I have also noticed that there is phenomenal exchange of information- from beauty tips to side-effect remedies and resources- that tends to take place when cancer patients past and present come together.
What emotions ran through you when you found out about your mother’s cancer diagnosis and then about your own BRCA2 gene mutation?
When I got married, I had been with my now ex-husband for about five years, and we were on top of the world. We had both just graduated and had wonderful jobs, and we had moved into a dream house in a new city that we were excited to explore together. We were in a position to live comfortably, and save money, and we lived in an innocent space where cancer had affected us only on the periphery of our lives, touching older relatives and friends of friends.
We had approximately two months of this marital bliss before everything changed with my mom’s ovarian cancer diagnosis. Life became a roller coaster that I am sure is familiar to most cancer patients and their families, one that is dictated by test results, medical procedures, and treatment plans/schedules.
Like most ovarian cancer patients, my mom was diagnosed when the disease was already in its advanced stages. The doctors never said it outright, but we all knew her prognosis wasn’t good. One of my mom’s first utterances after she woke up from the surgery that led to her diagnosis was about how she would never meet her grandchildren, and it completely broke my heart. The idea that I would have to experience motherhood without my mom crushed me.
As a consequence of my mom’s diagnosis, my then-husband and I decided to try to have a baby as soon as possible, a major departure from our initial plan of spending a few more years climbing our respective work-place ladders and saving up. We got pregnant right away, bringing a bit of light to an otherwise very dark time in my family. Unfortunately, simultaneously facing immense loss and parenthood brought a new level of stress to my marriage. We were both guilty of neglecting our marriage at this time, and the cracks that began to form in the foundation of what was once a very solid relationship ultimately turned out to be irreparable.
Adding insult to injury was the discovery that my mom carried the BRCA2 gene mutation that greatly increased her risk of certain types of cancer, including ovarian. This information fueled my family’s collective anger: how could my mom’s doctor’s have failed to broach the possibility that she could carry such a genetic predisposition when there was still time to take action and potentially save her life; after all, she was of Ashkenazi Jewish descent, and both her mother and maternal aunt had suffered cancers implicated by the BRCA mutation. In a final blow, my sister and I were told that there was a 50% possibility that we inherited the same mutation, and we were advised to get tested. I decided wait until after I gave birth, and I found my emotional footing.
To be closer to my mom and maximize our time with her, my then-husband and I spent extended periods of time staying with her and my step-father. I have fond memories of how warm and cozy this period was, but most days I felt like I was walking a tight-rope of sorts, balancing impending/new motherhood and caring for my seriously ill parent. As a couple, we were both emotionally-drained in a way that led us to continue the trend of putting our marriage on the back-burner.
Sadly, my mom passed away 15 months after her diagnosis when my son was just 4 months old. It was an amazing gift that I got to see them together if only for a brief few months. While he may never have a conscious memory of her, I love to tell him how she lit up when she held him for the first time, how she loved to brag about him, and how she would beg me to take the hour drive to her house every day I wasn’t there because she just couldn’t bear to be away from him. In those four months, I soaked up every bit of parenting advice from her that I possibly could- about nursing, soothing tummy troubles and sore gums, and getting through sleepless nights. As a retired early-childhood educator, it seemed like she knew a childrens’ song for every mood and occasion, and my son loved nothing more than listening to his grandma sing to him.
My ex and I hung in the relationship for another 4 years or so. I wish I could say that they were less trying than our first year of marriage, but this was just not the case. The black cloud of cancer continued to follow us, remaining a very present part of our everyday: soon after my mom passed away, I tested positive for the BRCA2 mutation. Knowing that carrying this gene meant that I was facing tough choices that could affect my fertility, we decided to try for another baby sooner rather than later.
We got pregnant with my daughter almost immediately, and had another bittersweet pregnancy wrought with the emotion of knowing that my mom wouldn’t be there to meet this baby, along with all the common stressors of adding to one’s family. Our marriage continued to break down after my daughter was born, and we ultimately split up when she was just around a year old, and my son was three. At the time of our separation, I had already decided to undergo a prophylactic double mastectomy, and I worried that if I moved the date, I would lose my nerve. And so, just one month after my separation, I went in for surgery.
The next 4 weeks were largely a blur, but the downtime actually gave me lots of time to reflect and to come to terms with my new status as a single woman and mother. I was sad and mourning my marriage, but the past few years had given me so much perspective and, while I was devastated, I felt more like a survivor than a failure, which I know is a common feeling after a marriage breaks up.
I decided that my goal in the next phase of my life would be peace. My children had already experienced turmoil at home, and I was determined to change this pattern going forward.
There is an upcoming fundraiser gala, in support of Lolly’s Locks, that Denise Albert, co-founder of The MOMS, independent mother, cancer patient, and award-winning journalist, will be hosting, on Nov. 3rd at Flash Factory NY…
https://lollyslocks.org/event/nyc-night-fashion-3/
Here are a few links to news stories about Lolly’s Locks and stories about wig recipients: