SUNDAY STORIES: MEET MY SISTER, MARLENE


This is Laura and I’m interviewing my amazing sister for our Sunday Stories feature. We’re discussing her astounding journey as a two-time breast cancer survivor. Even though I know the answers to these questions, my sister's story and journey is a beautiful one and I’m honored to conduct the interview and share with our readers a little bit about why selling t-shirts in support of City of Hope is so meaningful for us as a company. Let’s get started.

 

Q Marlene, tell us a little about yourself (where you grew up, where you live, and where you work).

Well first off, I’d like to express how happy I am to have this interview with you and share my story with others. I grew up in Alhambra, which is just 6 or so miles east of Downtown Los Angeles, in the San Gabriel Valley. For the last three years, I have served as the Development Director of Camp Ronald McDonald for Good Times, a phenomenal camp for children with cancer and their families that is located just above Idyllwild. I’ve worked in nonprofit fundraising for almost 10 years now and can say that this profession has enabled me to work with – and in the service of - some of the most incredible human beings I’ve ever met. I live in Pasadena with my two kitties and I enjoy continuing to call the San Gabriel Valley my home.

Q You are now a two-time breast cancer survivor and pretty young for having endured two battles with the disease in your lifetime. Can you tell us about the first time you were diagnosed and the experience of receiving that diagnosis at such a young age?

Yes, it’s true – I was just 26 years-old when I received my first diagnosis in September of 2001, and I was 44 when my recurrence was diagnosed in September of 2019. My journey is a perfect example of how important it is to know the landscape of your own body because in both instances, I was the one who first felt my tumors and brought them to my doctor’s attention.  

Truth be told, I was probably about 23 years old when I felt that first cancerous lump in my left breast. Breast cancer runs in my family, but so do cyst-prone breasts. So when I brought the lump to my mom’s attention, she said that it was probably just a cyst and therefore nothing for me to worry about.

Shortly after I felt the lump, I had a routine gynecological exam that also included a breast exam. And when my doctor didn’t notice the lump I actually opted not to draw his attention to it. In hindsight, I know why – I was afraid and overwhelmed. I deluded myself into believing that if he didn’t notice it, it was because it wasn’t a problem. My father had recently been diagnosed with Multiple Myeloma, an aggressive bone marrow cancer, and I think his diagnosis also played into why I used denial as a coping mechanism. I simply didn’t have the inner bandwidth to face the possibility of having a serious illness of my own while my dad was fighting his battle.

Flash forward to the spring of 2001 when I noticed that the lump had gotten larger. By that time, almost a year had passed since my mother’s own breast cancer diagnosis in May of 2000 and my father’s ultimate death from Multiple Myeloma in June of 2000. At this point, I was no longer so entrenched in the process of losing my dad and then helping my mom through radiation that I couldn’t face my own health concerns. I’d also just read an article in Marie Claire magazine about young women and breast cancer that included a list of physical signs to look for when conducting a self-examination.

The process of getting diagnosed took MONTHS. Between June of 2001 and September of 2001, I had an ultrasound, a mammogram, and a month-long wait before I could actually meet with the breast surgeon who would review my mammogram. It was on September 6th that I finally sat in his exam room and heard him say the words I’d feared hearing: “I’m pretty sure you have cancer.” The mammogram also revealed a second tumor deeper in my breast that I hadn’t even felt.

In that moment, I was gripped by a fear not unlike the fear I felt when my father was diagnosed with Multiple Myeloma. Imagine a trap door suddenly opening beneath your feet and experiencing the sensation of falling. And of course as I waited for my turn to have a needle core biopsy, I called our mom and she called you. You left work right away to be by my side, and I can’t tell you how much that meant to me.

My lumpectomy occurred on September 11th (THE September 11th of infamy) and I awoke from my surgery to hear my surgeon say that my tumors were definitely cancerous. When my friend Naomi came to the recovery room to take me home, she told me that while I was in pre-op, the World Trade Center and Pentagon had been attacked. I spent the rest of the day in a post-surgery haze, icing my swollen left breast and watching the footage of the 9/11 attacks play over and over again on television.

Q Have you ever been genetically tested for having the BRCA gene? And if so, how did it feel receiving the news of your results?

Yes, I met with a genetics counselor in December of 2001 to discuss getting tested for the BRCA 1 and BRCA 2 gene mutations. I had already had a double mastectomy and begun chemo at that   point, so the possibility of being told I had a gene mutation probably didn’t worry me as much as it would a woman who hasn’t actually been diagnosed with breast cancer. The worst had already happened! My blood was drawn and sent to a lab in Utah that confirmed I do indeed have the BRCA 1 gene mutation that puts me at an 80% risk of breast cancer in my lifetime and a 40% risk of ovarian cancer. That news came as no surprise.

 

Q After your treatment ended for the first breast cancer bout, how did life begin to resume as “normal”? Were you monitored closely for a certain amount of time afterwards? Tell us a little bit about your recovery process and how you began the journey of healing your body and mind.

Immediately and never is my answer to that question. It’s a paradox, really – once treatment was through (which the first time around lasted seven months and included my taking a medical leave from work), I returned to my job and resumed the day to day life I knew before my diagnosis. But of course, life as I perceived it was forever changed – any youthful sense of invincibility I may have had before was gone. Being declared “cancer-free” didn’t necessarily divest me of the specter of cancer and the fear of it returning. I simply learned to live with it as I continued to undergo six-month and then eventually yearly checkups for the next 15 years.

I really came to love the writings of Julian of Norwich during this time. She was a 14th century English mystic (the first published female writer in the English language) who had her own near death experience during which she came to know – on a deep level – God’s love. She heard Christ tell her “All shall be well, and all shall be well, and all manner of things shall be well.” I slowly (very, very slowly) began the process of allowing myself to contemplate my own mortality and the idea that maybe the value of my earthly life doesn’t hinge on how long it lasts. I leaned into my relationship with God and my belief that God’s love will always hold me, no matter what happens. I also just sort of threw myself back into being a young woman in her late 20s and having fun in the world.

Interestingly, my cancer journey also resulted in a career shift that played a big role in my healing. While I was undergoing chemo, I’d decided that I really wanted to learn how to create perfume. I tossed the idea around in my mind, picked up a few books on the subject, and loosely set it as a goal. Right before I went to back to work, two of my friends met perfumer Sarah Horowitz-Thran while she was promoting one of her commercial fragrance lines at Nordstrom. They told her about me, she told them that I was free to email her, and by the spring of 2002, I was helping her fill bottles once a month in her studio. By August of 2002, she offered me the position of apprentice. I worked for Sarah full-time for the next nine years, and in the process honed my skills in an art form that continues to bring me such joy. The process of working with Sarah and the crew of women I met at her company (Sarah Horowitz Parfums) was also incredibly healing for me, because we forged great friendships with one another that shaped us.

I should also mention that in 2007, a suspicious cyst on one of my ovaries and the knowledge that I had a 40% risk of contracting ovarian cancer in my lifetime prompted me to have a hysterectomy/oophorectomy. I powered through that experience “sheets to the wind,” as my uncle noted, but the fact was, the sudden loss of estrogen I experienced because of this surgically-induced menopause resulted in about five years of situational anxiety that would affect me in a pronounced way while I was driving. I experienced it worst while driving the freeways, and the only way I was able to climb out of that hole was by giving myself permission to be that annoying driver that everyone can’t stand because they drive a little too slow. And the best part of that story is that giving myself permission to suck worked! Holding that mindset and being kind to myself basically prevented my anxiety on the road from snowballing. Driving doesn’t make me anxious anymore at all, but to get back to this place, I had to be patient with myself and the side effects of my great medical adventure.

Q It must have been quite a shock hearing that your cancer had come back last September. Tell us about that experience, how you found it, and if you have any personal insights on the connections we hear between cancer being associated with stress and emotional hardships.  

 It’s funny, because 15 years after my first diagnosis, my oncologist said that available data didn’t show a benefit to closely following breast cancer survivors beyond the 15-year mark. So I celebrated that milestone, which came two years after my mother was diagnosed with Alzheimer’s disease and two months before Naomi (my close friend who I’d met in college and who was always such a hugely important person in my life) was diagnosed with Glioblastoma Multiforme, a very rare but aggressive form of brain cancer. Illness and the loss of my loved ones always seems to swirl around my own cancer diagnoses, so I can’t help but think that perhaps, for me anyway, there is a connection.

I found my recurrent breast cancer while I was taking a shower on the night of September 3rd, 2019. Naomi had passed away on August 6th, and just a few days prior, I’d moved my mom into a long-term care facility. The minute I felt the lump my heart sank, because it was in an area near my left reconstructed breast that had been completely flattened by the removal of 26 lymph nodes back in 2001. I scheduled an appointment with my primary care doctor who then referred me to a radiologist who ordered both an ultrasound and a needle core biopsy. On September 6th, 18 years to the day that I learned about the first breast cancer, I was told that it was malignant.

Soon after my second diagnosis, I met with a healer who practices bio-reprogramming, which is a modality that involves breaking (what some believe) are the links between past traumas and disease in our bodies. She told me that breast cancer occurs in women when their subconscious mind uses their breasts to express solutions for other people’s problems. The core of this theory is that our subconscious mind creates symbolic solutions within the body when we are unable to resolve our inner conflicts. She said that since breasts produce milk, a source of nourishment and life, my first cancer was my subconscious’ way of trying to express a solution for my dad in his illness. And my cancer recurrence, according to her, was my subconscious’ attempt to create a solution for Naomi in hers.

I have to say, her words resonated with me. I’ve always had a tendency to keep a stiff upper lip in the face of severe stress (people always comment on how “strong” I am), so it’s not inconceivable to me that my father’s and Naomi’s terminal diagnoses created more conflict within me than I was even able or willing to identify.

Regardless, I want to say that I don’t go in for any one-size-fits-all theories about why some of us develop cancer while others do not. Although I do believe in the power of the mind-body connection, the fact is there are plenty of really disturbed and conflicted people out there who never contract serious illnesses while plenty of well-adjusted people do. In the end, the best we can do is to live as healthfully as possible so that more positive variables than not work in our favor.

My mother passed away this past April while I was still undergoing chemotherapy for my recurrence. To say the least, this time has marked the second great sorrowful season of my life. My resolve moving forward is to stay grounded in the present. If this pandemic we’re navigating has certainly reminded us, life is unpredictable and we’re not promised tomorrow. So as cliché as it might sound, I’d say it helps to remember that our greatest obligation is to the here and now.

 

Q The past year has been quite a whirlwind for you. Can you tell us a bit about City of Hope and the level of care you experienced there? Is there any piece of advice you would give to a woman who was just recently diagnosed?

 City of Hope is amazing. I love my surgeon, my medical oncologist, my radiation oncologist, and their respective teams. This might sound crazy, but I actually looked forward to my chemo infusions and my radiation treatments because I fell in love with my chemo nurses and radiology technicians! City of Hope is one of the top cancer research institutions in the country, of course, but beyond that, I love their approach to care. Their whole ethos is really life-affirming and geared toward helping patients thrive, whatever their diagnosis.

My advice to a newly diagnosed woman is this: breathe through it. Lean on your friends and family. Know and understand that the diagnosis process is layered. Not all breast cancers are the same. Your doctors are going to evaluate multiple variables as they determine your course of treatment, and letting your mind run wild in any one direction will only zap your energy – the energy you’ll need to get through your treatment.

This second time around, a whole month and a half transpired between my diagnosis and the surgery to remove my tumors (yes, tumors – one larger one and one itty bitty one). I knew I’d made progress in my journey as a cancer survivor one night as I calmly watched a nature program on PBS. I was a nervous wreck right after my first diagnosis, but now here I was, calmly watching television even though I still had weeks to go before the tumor was removed! I really learned to calmly live with that darn thing in my body for those few weeks. Every now and then, I’d be like “How you doing in there? You good?”

Q What sort of self-care rituals do you do to help manage stress and keep you healthy? Do you have any favorite products that help you de-stress and unwind?  

 Exercise has always helped me manage stress, and before the pandemic, I really enjoyed swimming. Pools are closed right now though, so I take walks. I’ve also found that I really do require time to myself. Sometimes I just spend that time watching shows I enjoy, while at other times I’ll do something spontaneous like take a drive up PCH with my windows rolled down. As I mentioned before, I also love fragrance, so I enjoy creating blends in my downtime and using fragrance to balance my mood. I really love Kneipp bath products, which are imported from Germany and made with essential oils. I also really like the dosha body sprays from Poppy and Someday, a company based in Topanga Canyon. I especially love spritzing their Kapha (Earth+Water) body spray on myself and in my space whenever I want to feel grounded and calm. 

Q Are there any insights or tips you’d like to tell our readers in regards to your healing process this second time around?

 Aside from just being really mindful of what I put in and on my body, I’d say I’m prioritizing my commitment to staying grounded in the present. It’s easy when you’ve had cancer to allow your thoughts to spiral out into a future filled with “what ifs.” I’m getting better and better at NOT doing that.

As I mentioned earlier, I currently work for Camp Ronald McDonald for Good Times, which is a program of Ronald McDonald House Charities of Southern California. We provide camp programming to children with cancer and their families, so I’m blessed to be immersed in a community of people who, through their own example, remind me how to stay grounded when I’m having an “off” day. Camp is a joyful place, and everyone who visits our site or meets our families walks away with the understanding that a cancer diagnosis doesn’t have to mean the end of fun, reaching new personal milestones, or happiness.

Q We know that perfumery is a big passion of yours and oftentimes following a passion is what keeps us happy, healthy and in a good mental state. We sell your candle SO well at our shop. Our customers adore the scent and keep coming back for it. Can you tell us a bit about how you created Mexico, 1531 and what inspired you? Are there any other scents you’ve created that you love and are proud of? We also sell your Themis, 1969 scent at the shop, which now has a very niche cult following. Can you tell us a bit about it and what inspired you to create that scent as well?

Yes! Mexico, 1531 is inspired by Our Lady of Guadalupe, who appeared to an indigenous man named Juan Diego near Mexico City in December of 1531. She directed him to pick roses from the cold earth of the hill she appeared on, and then to bring those roses to the local Spanish bishop as a sign of her love and guardianship for the people of Mexico and the land. When Juan Diego came before the bishop and unfurled his cloak to release the roses, her image appeared on the fabric. You can still see Juan Diego’s cloak with the image today, in Mexico City. This apparition struck a chord with me when I learned that Juan Diego almost missed one of his meetings with her so that he could seek medical help for his uncle, who was very ill. Our Lady intercepted him en route, however, and told him not to fear his uncle’s illness – or any illness – because of her love for him. I find great comfort in that part of the story. I worked with a perfumer named Sherri Sebastian to develop the scent of damask rose and cold, mineral “dirt” in a candle base. The rest is history! The ODELLS Shop was actually the first to carry it.

Themis, 1969 is inspired by a boutique of the same name that was run by Pamela Courson, who was the girlfriend of Jim Morrison, the lead singer of The Doors. It was located on La Cienega Boulevard and, from what I’ve read about it and the pictures I’ve seen, it was a bohemian dream-space. Pamela stocked it full of clothes from Paris and Morocco, as well as exotic incense and perfume oils. I hadn’t even been born yet when she opened the shop in 1969, but since I grew up listening to The Doors and other 60s bands with my parents, I’ve always had an affinity for that time. I literally drafted the formula for this fragrance one afternoon back in 2016 when I needed to take a break from a grant I was writing. The minute I smelled it, I was transported to my idea of what Themis would have smelled like.

Q What’s the greatest lesson you have learned or the biggest gem of wisdom you have gained from now being a two-time breast cancer survivor?  

The greatest lesson I’ve learned is that a cancer diagnosis doesn’t actually make the future any more or less uncertain. The future is always mysterious, whether you’re contending with a serious illness like cancer or not. Cancer only divests you of the illusion of certainty, and this is one of its greatest gifts. Once you’ve let go of the illusion that you have any idea what the future holds, you can embrace today with more appreciation and face tomorrow with a greater sense of freedom and adventure.