It’s October, and out come the pink ribbons for Breast Cancer Awareness Month. According to Breastcancer.org, one in eight women will get breast cancer at some point in her life. I’ve known several women who have successfully come through the other side of a cancer diagnosis, and I’d like to share the journeys of two of my most favorite survivors. My hope is that their stories will serve as inspiration and guidance to women who have battled, will battle, or are standing by the side of a sister battling breast cancer.
I met Jodie and Jamie at an acting workshop, and I was immediately drawn to the courageous spirit of these warrioresses. While their diagnoses and treatments were different, they shared a few commonalities. They were each diagnosed with Stage 1 breast cancer at age 33, and they both attacked their breast cancers fearlessly, ferociously, and unapologetically.
Jodie is an attractive, dynamic, put-together redhead who, in typical Virgo fashion, gets shit done. If I were gathering together a team of people to help manage my life, she’d be my pick for CEO.
She remembers sitting criss-cross applesauce on her couch a few weeks before Thanksgiving, casually running her fingers along her upper breast during a stretch, and feeling a rock-hard bump, much like the tip of a knuckle. She immediately booked an appointment with her gynecologist, and got an ultrasound, biopsy, and mammogram all in one day. By the time she got to the mammogram, she’d almost passed out from the pain.
The cancer diagnosis call came one week later when she was fresh out of the shower — just before a huge musical theater audition. The audition could wait…
She immediately went to work on the cancer, booking an appointment at NYU’s Cancer Center with one of the best surgeons and undergoing a lumpectomy, which removes the tumor from your breast while “saving” the breast. From there, the doctors gave her two options: radiation and chemo, or radiation and hormone therapy. After extensive research, she chose the less popular route of radiation followed by hormonal treatment. “So, I need a little radiation and some hormones. This is gonna be easy,” she thought.
Jamie is a beautiful mother of three blond-haired, blue-eyed boys. She’s sunshine with an edge… the girl you secretly wished you were, before you grew to love you.
Jamie’s cancer diagnosis wasn’t entirely a surprise, but the timing was. She never anticipated getting breast cancer in her early thirties with a one-and-a-half-year-old on her hip and an eight-month-old on her breast.
Because she has a matrilineal history of breast cancer, she took a BCRA test to see if she was positive for either one of the two breast cancer susceptibility genes — BRCA1 and BRCA2. According to the most recent estimates, 55 to 65 percent of women who inherit a harmful BRCA1 mutation and around 45 percent of women who inherit a harmful BRCA2 mutation will develop breast cancer by the time they’re 70. She wasn’t a carrier.
But, there are several other genetic mutations for cancer, and one of them decided to get expressive a month later, when Jamie felt a lump the size of a cherry. She refused to wait two weeks for the first available appointment and insisted the doctor see her the next day. In just five days, she’d received a diagnosis, and much like Jodie’s, the call came on audition day. She was just about to walk into the room and read for Criminal Minds, so she let the call go to voicemail. After the audition, she turned her attention away from her career, and onto her cancer. First order of business: dealing with hunger strikes as she attempted to wean her baby off the boob far earlier than intended.
Her thought? “I guess I’ll just get this out of the way early with a lumpectomy and some radiation like my mom and grandma. No big deal.” Unfortunately, the cancer had other plans. Every doctor she saw confirmed she needed chemotherapy, and that’s when the bottom dropped out from under her.
Radiation, Menopause and a Party
Jodie and Jamie had very different cancer experiences and treatments, but one thing they did have in common was their proactive approach. But I’ll let them tell you their stories in their own words…
Jodie: Radiation was definitely on the docket after my lumpectomy. Treatment is typically six weeks, but they were testing a three-week trial of daily radiation at a higher dosage for younger women so I opted for that.
Me: Were there any side effects?
Jodie: The radiation made me a little tired. It’s basically like a terrible sunburn. My breast was so itchy. And they tattoo your body with black marks so the laser knows where to target and doesn’t hit your lungs or heart. I don’t mind my four cancer tattoos, but over time radiation makes your boobs shrink. I’ve noticed a difference… and that makes me sad.
Me: And you elected for hormonal treatment over chemo after radiation?
Jodie: It was the worst decision I’ve ever had to make in my life. For the next two weeks I drank more wine than I’ve ever consumed before or since, and just researched my options. Because my cancer was estrogen positive (meaning it fed on estrogen), I could get hormonal treatment. All the studies confirmed that the recurrence rate for chemo or hormones was the same.
Me: What do most people choose?
Jodie: Well, I got my second opinion, and both doctors said that most people choose chemotherapy. But I’m a go-getter, and there’s a side effect from chemo called chemo brain that can impair a person’s ability to multitask, and that for me was the clincher. I need to be a multitasking woman. So I opted for hormonal treatment, which was intense in its own right.
Me: So how does hormone therapy work?
Jodie: The goal for the next five years was to deplete my body of estrogen. I got a shot of Lupron once a month in my butt for five years as a way to shut down my ovaries. And every day for ten years I have to take a pill that binds to estrogen in my body so it can’t form any free radical cells.
Me: And the side effects?
Jodie: My period stopped within a couple months. Right away I got hot flashes, terrible night sweats, and joint pain in my hands, ankles, and knees. I couldn’t even open jars. But overall it was manageable, and after hearing the experiences of other women, not as excruciating as it could have been.
Me: So you went into early menopause?
Jodie: For five years! I threw myself a menopause party with my girlfriends at a wine bar. I wanted to honor the course of action I’d chosen, and it felt good to not hide from it or be embarrassed by it. But let’s be honest, the side effects were nothing to celebrate. I lost my sex drive. My eyes got dry, my skin got dry… pretty much everything got dry. And I’d be sweating in tank tops in NYC in the winter. The symptoms stayed for five years… but it just became what it was.
Boobs, Chemo and Cold Caps
Me: Which came first, the double mastectomy or the chemo?
Jamie: Usually, you’ll do the double mastectomy first and then the chemo, but I was nursing and had active milk glands so had to wait three months. Chemo coming first was a blessing because it gave me time to research my options for surgery. My doctors told me I could just do a lumpectomy because of the size of my tumor, but I had such small boobs anyway — I was barely an A — that for peace of mind I elected to get them both removed… and then upgrade.
Me: Tell me about chemo.
Jamie: Because I was HER2-positive, I needed six rounds of chemo every three weeks. The first week you feel horrible, the second week you start to feel a little better, the third week you actually feel pretty okay, and then it starts all over again.
Me: What was the scariest thing about chemo?
Jamie: The hair thing freaked me out. My hair grows at a snail’s pace. Even before the cancer diagnosis, I used to say that as much as I want to act, I would never shave my hair for a film… not even for a million dollars and a movie starring Brad Pitt.
Me: So… you were more worried about your hair than the sickness the chemo causes?
Jamie: It wasn’t really a vanity thing. I felt like the career I’d been passionately pursuing was going to be taken away from me. Because I can’t just start up again when I’m 55 and my hair finally grows back. I was terrified I’d never be able to act again.
Me: That I understand. So what did you do?
Jamie: I immediately started researching and found Penguin Cold Caps, which help reduce hair loss from chemo. They’re big in Europe and Asia, but it can be tricky to find oncologist offices in the States that are receptive to cold caps because they have to be stored in a deep freezer and changed every half hour for the seven hours you’re in the chemo chair.
Me: How cold is cold?
Jamie: Your head is minus 30 degrees and it’s really uncomfortable. Chemo tags everything in the body and then leaves, but when your capillaries are frozen, the chemo can’t reach them. Those cells are dormant and protected.
Me: Did the Penquin Cold Caps work?
Jamie: Yes, but you still lose a large portion of hair. You can only wash your hair once a week, and can’t use any products, brush your hair, or wear a hat or ponytail. You even have to sleep on a satin pillowcase! But the fact that I could look in the mirror and not feel like I looked sick… and I could still go out in public and have cocktails with the girls… and my kids wouldn’t know what I was going through… it just made such a difference. I could even audition. I was hoping for a heroin addict audition, but instead I had an audition as a hot trophy wife two days after chemo. I was definitely not at my prettiest, and I could barely walk… but I went.
Me: What about the other chemo side effects?
Jamie: Chemo side effects are the size of a book. Your fingernails can fall off, everything tastes like metal — sometimes you feel like you’re being electrocuted the pain is so bad… you get blisters inside your mouth. Anything that replicates quickly gets attacked… like nails and taste buds. That’s why you soak your fingernails in ice bags during certain chemo treatments.
Me: Double mastectomy with implants… or chemo — which was worse?
Jamie: Would I do chemo or surgery again? Surgery… ten thousand fold.
Be Your Best Advocate
Me: How did it go with the doctors? Were you happy with treatment?
Jodie: I was very appreciative. Most women in their 30s typically get turned away and told to come back in six months to a year. But my gynecologist ordered the ultrasound for the same day. And thank god she did because during the lumpectomy they discovered that the tumor had already started to grow legs back into my lungs, and if I’d waited six months it would have been a very different outcome.
Jamie: Let me be very clear: I hate teaching hospitals. Sure, teaching hospitals are these renowned institutions with the most prestigious doctors, but you get med students working on you! When I was putting together my surgical team, I heard a horror story about a renowned surgical oncologist who works out of a teaching hospital. Apparently, he’ll do one boob, and then he’ll have a resident do the other boob. So the patient ends up with one good boob and one butchered boob! Avoid teaching hospitals. 100%.
Me: That bad?
Jamie: I went to UCLA — a teaching hospital — and a younger guy, a resident in his late twenties, was supposed to do my biopsy. He assured me he’d done many. I even knew enough to not want anyone but an experienced doctor touching me… and even with me advocating for myself, it still went bad.
Me: What’s it like getting the biopsy?
Jamie: They use a huge metal apparatus as thick as a pencil with a claw on the end to take a chunk of your flesh out. They let me listen to the sound it makes before they put it in so that I wouldn’t freak out. Well the resident didn’t numb it right, so I felt EVERYTHING. And then he had to do it again because he didn’t get enough the first time! And that was the beginning of all the crap I dealt with at teaching hospitals.
Me: What else happened?
Jamie: I had to have a port put in under my skin to keep my veins from collapsing during chemo. I went to Cedars Sinai — another teaching hospital. After my experience with the biopsy I spoke up and expressed that I didn’t want a student putting in my port. But they assured me he’d done many and I would be in great hands. I wasn’t. It was a two-hour ordeal, and after the doctor-in-training was done with me, it looked like I’d been attacked by a pit-bull. I was bruised the length of my upper arm, with extreme swelling.
Me: Was the port worse than the mastectomy?
Jamie: The port hurt a ton. And because the port surgery was done so poorly by a student doctor I got C-diff, an intestinal infection that had me doubled over in gut-wrenching pain.
Me: How long did you have the port in your arm?
Jamie: My oncologist wanted me to keep my port in for the entire year and I said, ‘F-you. As soon as we’re done with the chemo rounds that collapse my veins, we’re taking this thing out.’ When my plastic surgeon opened up my arm to remove the port during my mastectomy, it flew out and dove like an alien across the room. It didn’t want to be in my body any more than I wanted it to be there.
Me: And was the port your last experience at a teaching hospital?
Jamie: The anesthesiologist scheduled for my surgery was a resident. I said, ‘Look. I’ve been through enough. You’re going to stand in the corner with your hands in your pockets. Go get your superior.’ No one was going to learn on me anymore.
Tell Me, How Much Do You Love Your Boobs?
Jamie: I had a baby and a toddler, and I needed to be able to lift my kids and put them in car seats, so I found a plastic surgeon that does immediate reconstruction right after the mastectomy. My boobs are better than ever. My husband jokes that the reason we have our third kid is because my plastic did such a good job on my boobs.
Jodie: I loved my boobs so much. I loved my décolletage. I was always wearing low-cut things. I don’t have big boobs, but they were a good B and I feel like I lost a part of my body that I love. I still look at my left boob and say this is my good one. And I call my right boob my bad boob. I say it out loud. Still.
Me: So there’s still healing to be done?
Jodie: Coming off the Lupron there is always more healing to be done because I’m seeing things in a different way. Feeling things deeper than I have before. But I’m not protecting myself so much anymore.
Me: What do you mean?
Jodie: I used to sleep with my arms crossed around my breasts. I’d wake up and my arms would be numb because I was in a constant state of protection. It started happening at the beginning of treatment. And for seven years I didn’t even touch the boob with the cancer. I justified it saying, ‘I go every three months for a checkup so I don’t have to touch it and do a self examine.’
Friends That Step Up and Friends That Fade
Jodie: I emailed my core group of girlfriends to let them know I was going with the hormonal treatment. They were all supportive, except for one friend who wrote back, ‘How dare you not do chemo! You’re going to die and why are you doing this?’ I was floored. I emailed her a long explanation defending my decision with links to the research. Her response? ‘Whatever’ — and I never heard from her again.
Me: Wow. She wasn’t strong enough to go through it with you. So she found a reason to bow out.
Jodie: It was amazing the friends that really stepped up and the friendships that dissipated. And it was fascinating to witness how people dealt with the cancer. Some people don’t know what to say and so they just don’t reach out. And some people reach out all the time. I tried to help other people deal with it. Because what do you do? It’s hard.
Me: If you could give any advice to friends and loved ones of cancer sufferers, what would it be?
Jodie: To still treat them as a human being. Friends would walk on eggshells. ‘How are you… how are you feeling?’ You can ask me how I am, but you can still ask me about other shit. I’m watching the same TV shows and doing the same things. I’m not saying pretend it’s not there. Some people go to the extreme. But other people… it’s all they see, and they’re filtering everything through cancer. There’s a middle ground of honoring the emotional and physical experience a person is going through… and not forgetting who they truly are.
Jamie: Ask if they need help with any research. Most people, when they hear they have breast cancer, don’t know where to start. I’m very proactive and don’t easily get flustered, but after talking to people during my journey I realized that many get paralyzed in a bubble of fear and uncertainty. So friends can help find doctors and set up appointments… or go on appointments to ask the necessary questions and then relay the answers to the patient after. It’s so overwhelming it can all be a blur later.
Me: Any suggestions about helping a friend through chemo?
Jamie: As far as chemo goes, don’t say, ‘Aren’t you so glad this is the last one.’ It’s like saying, ‘aren’t you glad you’re getting poisoned for the last time?’ No, because there’s nothing good about getting slowly poisoned over the next two weeks. After every chemo session, even the last one, new and horrible things happened to me. I never knew what to expect.
Lessons and Love
Jodie: After I got off the shot, it took a year for my period to come back, but within six months I felt totally different… feminine. I wanted to light candles and take a bubble bath. My estrogen was coming back! I thought I was good on the medication, but I didn’t realize how much it had affected me.
Me: How so?
Jodie: I’m already very testosterone driven, and the treatment had made me even more so. I felt this veil lift and realized I wasn’t happy… and that’s honestly what precipitated my divorce. I started examining my life.
Me: Did the dissatisfaction in your marriage settle in after the cancer, or was it there before?
Jodie: I feel like cancer really saved my marriage. It bonded us and enabled us to move forward as a team just as we were starting to live separate lives. But we were two analytical people in a relationship… not feeling… and coming out of that was realizing how much I hadn’t been feeling, how much I hadn’t been heard, how much I hadn’t expressed, how much intimacy had died… and it was okay while I was dealing with cancer. I couldn’t know anything else at that time.
Me: But after the cancer the glue came undone?
Jodie: It’s been interesting to shed the guilt of, ‘wow I was with this man who helped me through cancer and now I want to leave.’ And in the beginning I was like… I can’t. He helped me through cancer. That was our plan. I’m taking care of you now and you’ll take care of me later.
Me: And then…
Jodie: After going through the treatment and coming out on the other side I realized that I get to put myself first all the time. It’s my life and it’s my boobs and it’s my cancer and it’s my choices, and I get to live for me and not for anyone else.
Me: Is there any advice you’d like to give a woman diagnosed with breast cancer?
Jamie: Don’t be afraid to be your best advocate. Don’t blindly listen to doctors. Ask lots of questions. Research the hell out of things. Set up your team and make sure you are comfortable with them. And if you need help, then ask someone to help you with that.
Jodie: Normalcy saved me. Literally three days after my lumpectomy I was career coaching someone. And yes, there was a point where I was like, ‘I don’t give a fuck about your resume and your font scheme and your color choice right now… why are you complaining about that when I have cancer!’ But at the same time focusing out was really helpful in my recovery period. It’s so easy to isolate, but it’s important to have connection.
Me: What about support groups? Did you go to them?
Jodie: I was in a support group for 30-something women with cancer. Some with breast cancer, others with ovarian cancer, and one with tongue cancer, but she’d never been a smoker and she felt a lot of shame around that. There was a lot of shame around cancer. The group helped me work through some shame and acknowledge that sometimes things just happen, and it’s okay. To take my lessons learned and figure out how to best serve people from my experience with breast cancer.
Breaking Up with Cancer
Me: And what’s your relationship with cancer now?
Jodie: There was definitely a period when I was angry and sobbing. Yes I know I can handle this, but why do I have to? I was eating healthy, working out, drinking green tea every day, wearing all natural deodorant, and I got breast cancer. No family history. Nothing.
Me: Some say cancer is the result of past trauma, or stress, or some kind of dissonance that needs to be worked through.
Jodie: If you had said that to me in the first three months of my diagnosis I would have slapped you across your face. And my mantra forever was, ‘everything happens for a reason.’ But I couldn’t look at my cancer that way in the beginning. I also believe that we create our circumstances. But I wasn’t prepared to ask, ‘how did I create this?’ Now, with distance and time and therapy, I do believe that my cancer happened for a reason. I was going down a path of all work all the time, stressing myself out… a multitasking extraordinaire. I never stopped to just be. Cancer was my wakeup call to slow down and truly know that life is precious.
Me: Jamie, why do you think you got cancer so much earlier than your mom and grandma?
Jamie: I think stress plays a part in how fast something grows in your body. I think that could have accelerated the cancer. Maybe the fact that I had two kids 15 months apart. Also, when you breastfeed your breasts are very active. I feel that both environmental and genetic factors play a role. So many women are getting breast cancer younger now.
Me: Are you afraid of the cancer coming back?
Jamie: Not really. I felt good about being so aggressive. I’m good about scans and checkups. It’s not something I fear.
Jodie: I hit the five-year mark, so not so much now. For years it was always in the back of my head, but I don’t really hear it anymore until the appointment rolls around. When I have the big checkups there is always a feeling of ‘fuck.’ Because if they find something, I know what the path is… and this time it’s chemo. With the knowing… it just changes things.
Me: Anything else you lovely ladies would like to share?
Jodie: You know, I never wanted to hide behind my cancer or apologize for it, but I also didn’t want to define myself by it. It took me many years to call myself a cancer survivor, but now I see it as a badge of honor. I can look at a photograph and tell if it was pre-cancer or post cancer. Pre-cancer I can see in my eyes that I wasn’t totally there. Post-cancer, I’m more fully present.
Jamie: Having had chemo and remembering how I couldn’t even get upstairs at times, I don’t take any moment for granted with the kids. I may be tired and it may have been a long day, but if they ask me to kick the soccer ball with them, I never say no. I’m not doing chemo… I don’t have an excuse. People say the young years with kids go by so quick, but I don’t feel that way, and I already have one in kindergarten. I feel so present and so involved. I’m just not letting the little things go by.
Where Are They Now
I for one am so happy to have such brave, wise women in my life. Just so you know, Jamie finally booked an awesome role on Criminal Minds, and Jodie just got back from a vacation in Bali with her high school boyfriend, with whom she recently reconnected. Yup, just like the plot of a frickin’ Hollywood movie. And, I can’t wait to see what happens next!
Glad Lash continues its ongoing support for breast cancer research through its fundraising for Susan G. Komen during Breast Cancer Awareness Month.