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On a gorgeous blue-sky day in New York City on the morning of September 11th, 2001, I was one year into married life and five months pregnant with my first baby and felt that life could not be more perfect. When the first plane struck Tower 1 of the World Trade Center at 8:46 AM, we believed it was a horrific accident and started calling friends to make sure everyone who worked in lower Manhattan was ok. We had 17 minutes to keep believing that accidents happen, and boy are we lucky my husband’s meeting in the WTC was scheduled for the next day, when the second plane struck Tower 2 at 9:03 AM. That was when I felt the baby inside me move for the first time ever. That was when the fight or flight adrenaline in my body dumped into the amniotic fluid, and she started bucking and kicking like she was trying to escape. That was when we thought the world was ending.
We survived the chaos that ensued that fall and on January 5, 2002, I gave birth to a beautiful baby girl who entered the world with her arms stretched wide open. Breastfeeding came easy, my milk was plentiful, but on day 2 I felt a hot, stinging knot forming at 12 o’clock on my right breast. I had studied all the pregnancy books thoroughly and had moved on to memorizing the milestones of baby’s first year, so I self-diagnosed this as mastitis, called my OB’s office, and let them know I needed antibiotics. They didn’t question my confident tone, didn’t ask to see me to check it themselves, but called in the prescription.
The hot spot in my breast went away, my baby thrived, but life in NYC started to feel uncertain, terrorism ever on our minds, and people were moving to Brooklyn from Manhattan in droves to put a river between them and the island where so many souls had been lost. We sold our beautiful garden level condo in a hundred year old brownstone a frisbee throw from Prospect Park, packed up our things, and moved west to Portland, Oregon, where I was from, where my family lived, where we thought it was safe to raise a family, where life could revert back to the perfect plan of how it was supposed to be. But that old saying proved to be painfully true, “life is what happens to you when you are making other plans.”
I got pregnant with my second baby and the first trimester was a blur of intense morning sickness and trying to keep up with a precocious 1 year old. Early in the second trimester, that baby’s heart inexplicably stopped beating. Watching them search for the heartbeat when we’d seen it on ultrasound the appointment before was at first confusing and then devastating when we all realized at the same moment that the baby was gone. I was sent home in tears, prepared to pass the fetus naturally, privately, consciously. But my body did not get the memo, so after a week of living with a non-viable pregnancy that my womb fiercely held onto, I laid down for my first ever “surgical procedure” and had a D&C.
I vaguely remember during the recovery a sensation in my right breast at 12 o’clock, the place that always felt different when I was done breastfeeding on that side, a hollow, tingling sensation when the milk emptied and the tissue was liberated from pressure in the surrounding milk ducts. The second pregnancy had brought the usual changes to my breasts, but when the baby died those rapidly changing cells had to stop short and never completed their ripening task. Looking back, the miscarriage may have contributed to the spread of the breast cancer cells that were brewing in that spot. I’ll never know what “caused” this cancer to grow inside me or when it began. Breast cancer starts as one rogue cell. Then it divides into two, then four, then eight. That first defective, cancerous cell needs to divide 30 times before you can feel a lump, and each division takes one to two months. By the time you can feel a lump, it’s been in your body two to five years.
I deeply mourned the loss of this baby, delighted in the brilliance of my firstborn, and eventually had my rainbow baby in 2005. Right away, that sensation in my right breast at 12 o’clock returns, but I’ve felt it before and tell myself again it’s just a clogged duct. There’s no breast cancer in my family history, I had my first baby before age 30, breastfed both of them – these boxes are checked off on my “reduce your risk of breast cancer” list, so I am not concerned at this point at all. It is not until my deflated chest returns to a pre-pregnancy state that a vague worry starts to form as I lay awake at night palpating a smooth, round, movable ball at 12 o’clock. I google too much and find a recommendation to follow that lump through my cycle, see if it changes with the onset of my period. That’s the responsible thing to do, so I do it. I don’t trouble anyone with phone calls or requests to see my doctor about it. Please don’t do this if you have a lump. Call right now!
It’s now the late summer of 2006, and I’ve taken my one and four-year-old to visit our New York family. I’m back in the state where that spot on my right breast first spoke to me, and while standing in the shower I feel around to see what that lump is doing and to my horror it’s transformed itself from an M&M to a Junior Mint. It dawns on me that we have just bought a house in a suburb of Portland, and I don’t even have an OB/GYN in the area yet. I get a referral from the other preschool moms, and when I call and say new patient, they say they are booking out three months. I decide to add, “well, I do have a lump that I’d like someone to look at” and suddenly they have an immediate opening to see me in a week. I’m so thankful for that moment because that might have been the difference between being diagnosed as late stage 3 vs stage 4.
September arrives, I go to my appointment. I get lucky because they randomly assign me to an amazing doctor who reassures me that the lump is “probably nothing, no need to call your husband, just head over for an ultrasound for peace of mind.” Referring me for the ultrasound instead of saying let’s keep an eye on it is the second moment I am deeply grateful for so that I can share this story with you instead of having my now 17 year old write a college essay about the mom she never got a chance to know.
The ultrasound quickly turns into a core needle biopsy that confirms it’s an aggressive, hyper malignant form of breast cancer, and the diagnostic body scans that follow show nine glowing lymph nodes under my right arm, all positive for breast cancer. Those nodes have done their job to filter and catch the traveling cancer cells, but the fact that the cells have broken out of the milk duct, exploded into surrounding breast tissue and are now loose and flowing in my bloodstream, able to set up shop in any organ they travel to, is very bad news indeed. Before anyone stops to talk about what surgery I’ll have to get rid of the cancer in my breast, they are rushing me to start dose dense chemotherapy to try to prevent the cancer from spreading. With two pairs of big scared eyes looking to their momma for reassurance, I dig in for the fight of my life.
I am implanted with a chest port so that they have a direct line into my vena cava, because the chemo they plan to give me is so toxic that it kills and collapses the veins in your arm. One of the drugs is nicknamed the “Red Devil” for its blood red color and comes in a big fat plastic syringe that a nurse dressed head to toe in safety gear in case a drop splashes on her, slowly hand pushes straight into my chest. I lose my hair, my eyebrows, my eyelashes, and get my first, very unexpected, Brazilian. My nail beds dry out and stop growing, so I lose my fingernails too. They give you powerful drugs to counteract the poisonous drugs they are pumping you with that prevent you from vomiting by flipping the switch in your head that triggers that reflex. So while you don’t actually throw up from chemotherapy anymore, you dream of the relief that sometimes comes after puking your guts out. There were a couple of times I lay on the cold tile floor, looking up through the skylight at the stars, feeling so nauseous and disconnected from my body that I wondered if my girls would be ok if I just floated away and left this battered shell behind.
Chemo proved unsuccessful as lumpectomy and axillary node dissection to level 2 under my arm followed, and when they cut the lymph nodes and cancerous lump out of me and looked at the center, the cancer cells were still rapidly dividing, having a grand old time unaffected by the poison I had just spent months ingesting. We didn’t get surgically clean margins with the first lumpectomy, so my surgeon confidently said he would get it all the second time. I thought, “ok, my breasts will be super uneven, but at least I get to keep my nipples and I can figure out how to make it look better later.” I woke up from the second lumpectomy hearing, “I took a 10 cm piece, but unfortunately, we didn’t get it all. I think I can do it on the third try, but we are chasing invisible cancer here…” Sorry, no third time for me if you can’t even see whether you are getting it all or not! And while you are at it, take them both because I’ve been googling and learned my breast cancer subtype is more often bilateral than others, and I can’t live with the fear that the other one might silently be trying to kill me too. I needed a definitive end to the cutting as radiation was looming as the next step and each surgery required a two-week recovery before the next one, further pushing out the start date for the attack planned for the more worrisome cancer that had spread under my arm. My radiation oncologist was getting antsy and concerned that this was life or death, and we couldn’t afford to try again…and fail. There wasn’t time to consult a plastic surgeon about reconstruction, so before my double mastectomy, I looked in my surgeon’s compassionate eyes and asked for the most beautiful, symmetrical flat scars he could sew, and I’d like to think he honored that request admirably.
I was given the maximum dose of radiation to my chest wall and underarm while receiving painful monthly shots in my butt muscle to chemically suppress my ovaries, coupled with taking a daily Tamoxifen pill to further block the estrogen in my body. My oncologist was worried it wasn’t going to be enough to stop the cancer from spreading and encouraged me to consider upping the treatment to the surgical removal of my ovaries so that I would be eligible for next level hormone treatment in the form of aromatase inhibitors that suppress the production of peripheral estrogen in the skin, fat, and adrenal glands. A month later, I had surgery to remove my ovaries and uterus but clung to my cervix, stating that I didn’t want “a vagina to nowhere with a stitch at the top.” I was mad that every organ that made me biologically female was being cut out of my body. Little did I know at the time that my vag shape was not going to be an issue as 21% of marriages end in divorce when the wife gets sick (ahem, 3% when it’s the man), and I would fall prey to that statistic too as my marriage unraveled during my 5 years of intense, ongoing treatment.
After five surgeries, we added targeted biologic therapy every three weeks infused through my chest port, a clinical trial drug that chained me to the bathroom with vicious diarrhea for a year, and powerful daily hormone blocking pills that I was now eligible for as I was officially post-menopausal. The surgical castration was rendered even more extreme by these drugs as my body was starved of estrogen, the fuel my breast cancer was growing from but also a source of serotonin, youthful skin, a sex drive. Talk about adding insult to injury in this full-on assault on my femininity! I did many complementary therapies to get me through the five years on these drugs including acupuncture, daily supplements, healthy whole food as medicine three times a day, massage, steam rooms, meditation, and yoga. But the most important thing I did to endure treatment, flush toxins out of my body, and continue to do to this day in order to remain on this planet and raise my girls is maintain a focus on fitness. I moved my body every…single…day. From a snail’s pace shuffle down the block and back in the throes of chemo, to a drenching sweat sesh in a cycle class as I rebuilt my body, mind and spirit, fitness has been a constant way to check in and remember that each day in this strange new body that I was handed is a gift. Visualizing the climb, going for it in the sprint, and reaping the reward of coasting toward a cool down as I pedal for my life in each and every class is an expression of gratitude for this body of mine that has been through so much, yet keeps on keeping on, and an opportunity to listen to the messages of what feels different today than last time. I will no longer wait to act on what my body is trying to tell me. I’ve finally learned how to tune in and hear the messages loud and clear, and you can too if you dial up fitness as your frequency.
And it is my commitment to fitness that I have to thank for guiding me to a career where I get to live my passion every day at Handful, an activewear company with a heart for supporting breast cancer survivors.
wow Cary, what a journey you had. Thank you for sharing. Your strength is inspiring!!
Wow, what a grueling journey you had through cancer. Thanks for sharing. I was diagnosed the same year, and had a similar yet less dramatic treatment protocol and, too, am thankful to be here! And thankful to have discovered your bras – been looking for an affordable mastectomy sports bra for us active survivors. Loving my first ones, eager to order more in different styles, and to no longer buy “old lady” ones from the hospital. Thank you so much, and prayers for continued health as you raise those two girls.
I appreciate you. Thank you for being resilient and guiding me with your kindness and grace as I also had a complicated breast cancer treatment. You have always been a ray of hope for me that there is beauty, strength and femininity when alot of what made me feel female I gave up to thrive on after cancer. You are currently shaping the lives of your daughters who will know the definition of perseverance.
I know it isnt easy. Thank you for walking this path and choosing life, dedication and love.
Oh I am acquainted with Big Red also. Thank you for sharing your story. Part of it is my story, too. Especially I thank you for your vision and for making bras that work for those of us who need them.
THANK YOU Cary for generously sharing your brave BADASS story; you INSPIRE us all and make a BIG DIFFERENCE! #FUcancer LOVE YOU!
I just read your story and, wow…now I know what drives you and to help others in our recovery. I love my handful bras and inserts and have forwarded your name to my friends with similar situations.
You are awesome and a SURVIVOR!
Continued love and sharing!
Thank you for sharing your story!