A Pink Badge of Courage
Chemo treatments, breast reconstructions and a 25th wedding anniversary. Our breast cancer roundtable convenes for the fourth year to talk about life events and their shared connection.
For the last three years ago, Eureka has marked the “Pink Ribbon” month of October by speaking with a round table of remarkable women from Charles River Labs who are all cancer survivors. The discussions have circled around health insurance, treatment options, family support, the ever-present fear of relapse, learning to laugh again, and many other topics.
This year we added a few new faces. In addition to three of our roundtable regulars—Rachel Kiserow, Susan Desmond and Pat Seyffert—newcomers Nancy Nash and Anita Roach also shared their stories. We also invited Brianne Carter, LICSW, MTS, the Director of Integrative Care at the Virginia Thurston Healing Garden Cancer Support Center in Harvard, MA to help moderate the discussion. Read and enjoy and feel free to reach out to the panel with comments and questions.
Susan Desmond, Associate Director, Events Management at Charles River in Wilmington, was diagnosed with breast cancer over 4 ½ years ago. She underwent chemotherapy, a mastectomy, radiation and breast reconstruction. Her tumor was estrogen receptor positive, so she also takes hormonal therapy every day. Because her cancer was stage IV, meaning that it had spread to another part of my body, namely her bones, she also had aggressive estrogen “shut down” via full hysterectomy.
Rachel Kiserow, a Senor Human Resources Representative at the Safety Assessment site in Reno, was 35 when she was diagnosed with breast cancer. Surgeons initially performed a lumpectomy but when the tumor turned out to be larger and seemingly more aggressive than expected, Rachel had seen enough. “I told them to take them both,” she said and underwent a double mastectomy in 2012 followed by chemotherapy and radiation. Then, in 2014 she underwent a full hysterectomy and oophorectomy since she was at risk for uterine, ovarian, and cervical cancer. She is currently taking the hormonal drug tamoxifen and this past year underwent breast reconstruction.
Nancy Nash is Marketing Director in Laboratory Sciences. Nancy initially attributed a lump in her breast to a fall in her laundry room. Even though she wasn’t due for a few months, she had a mammogram done. Oncologists ultimately diagnosed her with HER-2+ breast cancer. Chemo-sensitive to an initial regimen of drugs, Nancy began taking Taxol along with two monoclonal antibodies, which fortunately are working. She has completed 10 out of the 12 treatments.
Anita Roach, Executive Assistant based in Wilmington, credits a mammogram that she almost didn’t have with finding her breast cancer. In 2016, after missing her annual screening, she decided rather last minute to sign up for an appointment at Dana-Farber’s Mobile Mammography van, which was on the Charles River campus on Pink Day. The images revealed what ultimately turned out to be Ductal Carcinoma In Situ, where abnormal cells congregating in the milk ducts of the left breast. During a surgical follow-up, physicians found another lump in her right breast that appeared to be a cyst on the MRI, was actually a Stage 1 tumor. Following lumpectomies in both breasts, Anita underwent seven weeks of radiation therapy and is now taking Tamoxifen.
Pat Seyffert is an executive assistant and an 11-year veteran of Research Model Client Services in Wilmington. Doctors discovered her cancer 11 years ago during a routine screening. Pat underwent a lumpectomy and had 18 lymph nodes removed, three showing evidence of breast cancer. She also received chemotherapy and radiation treatments. She recovered and is doing fine. So fine that two years ago her team placed second among 73 teams from the company’s Wilmington campus in the 100-day Global Challenge event. Anita was also part of the team.
Regina: What’s been happening in the last year? Any health updates?
Anita: In December I had a hysterectomy because I was having some problems. Besides that my health has been fine. I've actually been trying to get back into running and working out so I can lose the weight that I've so nicely put on after all the surgeries.
Nancy: After the first eight weeks of treatment, I was still walking and exercising and doing everything around the house. I felt guilty accepting help because it really hadn’t been that bad. But the last few weeks the treatments have really hit me. I’m tired all the time, and achy. I can't say that I'm happy to be part of this group but I am pleased that I was invited here.
Susan: I think I mentioned [at last year’s roundtable] that I had a couple of biopsies done and they turned out fine. This past year's actually been pretty uneventful. We like boring in our cancer world. My daughter started her second year at San Diego State, my youngest daughter's got her license yesterday, (gulps and laughs) and my husband and I celebrated our 25th wedding anniversary.
Rachel: This year was not uneventful (laughs). I actually finally got reconstruction done. I went ahead and did the TRAM and the recovery was gnarly. I didn't expect to be down and out for that long. I was in the hospital for about a week just because of my oxygen levels. I came home with a bunch of oxygen tanks. I couldn't do much. I couldn't put my socks on, I couldn't put my pants on by myself. But it’s healing up wonderfully and I’m back to work.
Regina: How does sharing your stories at work impact your sense of connection, and sense of being cared for at Charles River?
Anita: It's comforting. You’d be surprised at the people who’ve come up to me and said, "Oh my God, thank you so much for telling your story."
Susan: I don't know if validation is the correct term, but it validates why we [Charles River] do what we do.
Pat: When I first got it, I remember we had Quarterly meetings down in the Hub [Charles River cafeteria]. Sometimes I would be quietly sitting there as they were talking, and I'd almost want to stand up and say, y'know I have breast cancer. It makes you appreciate what Charles River does and how it helped save me.
Nancy: I feel like the people that I work with are the most positive. They immediately look past the pity and they know there's a positive side of this and that you can beat it. Whereas I find a lot of my [other] friends want to feel sorry for me because they don't understand the disease.
Rachel: I find myself being approached as well. I've had a number of employees come up to me privately and say, "Hey I found a lump. Can you give me some advice if you don't mind?"
Brianne: Having all of you connect as colleagues through this roundtable, and hearing how becoming a more public voice within the organization has validated the work that is done there I think it’s important to honor and take a little credit for the badge of courage you earned by doing this round table, which really feeds back into the organization.
Nancy: I think you said that perfectly. I always felt good working here even before I became, sick, and now just to know that I benefit from it is even more rewarding.
Brianne: I've heard other people when they walk into big organizations like Dana-Farber and know that a lot of research is going on, sometimes they feel like a number. I don't think a lot of people have, as an antidote to that, work in an organization where you are a part of what plays into that research. Your organization is standing out to me as particularly unique in doing this roundtable.
Regina: What has it been like for you to be this public about your diagnosis?
Susan: It can be challenging just putting it all out there. For me, I've always found support groups definitely part of my healing. For me to be public about this is hopefully helping someone else.
Anita: I don't think breast cancer is something that we should hide. When I was first diagnosed, I did not tell anybody and that was mainly because I didn't want to get upset in front of people, but afterwards it's like, yeah, yeah, this is what's going on.
Nancy: I know when I was first diagnosed, I actually had my husband tell people because I just felt awkward. Even now, there's probably 50 people that I deal with day in, day out or I felt needed to know because they're probably wondering why I'm out every Thursday morning, going for treatments. When they found out they were like, “Omigosh, you didn't tell me you've been going through all this, and you know, it's just amazing you're still working as nothing is happening.” It just made me feel a little bit stronger.
Regina: How do you continue to selectively absorb information that is relevant to you, and how do you navigate sites for information about breast cancer
Nancy: I'm a research scientist and fairly educated, but you can get all caught up in the, I don't want to call it fake news, but you know, the old news, the old statistics. You can get overwhelmed. What you have to focus on is are these legitimate sites and is this what I need to be looking at and not go any further.
Pat: Dana-Farber sends me this little magazine, and I read a lot online. But I think from day one I was very positive. I went through it with very few complications so that made it a little easier for me.
Susan: I'm at a phase where I'm not doing a ton of research. Certainly if I see a new drug or new treatment, I'm intrigued by it. I do still go online to different groups. There's a Facebook group called Stupid Dumb Breast Cancer. They have some good topics that they toss out and allow you to share your experiences.
Anita: I think we're all gonna go to that one (laughs).
Brianne: October, when breast cancer awareness takes on a real consumer drive, can be a challenge for some people. There's so much information about breast cancer coming at them that they don't get to turn off that awareness when they want to. How do you filter out information and close that door when you need to do it?
Susan: I struggle a little bit. Awareness is so important, but I wouldn't mind seeing some of those commercial dollars going into the research.
Anita: I try not to go on social media too much because you can just get overwhelmed. I'm taking Tamoxifen and in the beginning I was doing research online to see what the side effect are. Now, I just try to stay away as much as possible because it gets in your own head. You can make yourself crazy just thinking about it. I'm hoping that when I get to that stage where it's like maybe five or 10 years [post diagnosis], I won't be thinking about it as much. Now I think about it all the time.
Rachel: I'm six years out from diagnosis and surgery now. I’ve relied on my wonderful doctors and I’m confident in what they've done for me. They saved my life. I do hear stuff here and there, or see things on social media, but I don't spend much time researching on the Internet because it gets me too worried.
Nancy: I am not to the point where I need to filter out all this information. Working from home I can go a week and never even leave the house. So I guess that's sort of my own personal filter. I just don't go anywhere so I don’t get inundated. And I'm not a big Facebook person.
Regina: Do you feel like breast cancer has overshadowed everything else and become your main identity?
Anita: I don't feel that way at all. It’s a part of me, but it's not my whole life. I try and just live life one day at a time and not really overanalyze things too much because there's too much going on in this world that I want to enjoy and I don't want people to think of me as, oh, she's the one that has breast cancer. There was one time though when we went away on vacation, I was wearing a bikini top for the first time since my surgery. I'm sitting there talking to my husband and I'm like, “Can you see my scars?” And he's like, “No, you're fine, but you're putting on extra sunblock.”
Susan: Same as Anita, I really don't try to make that my first identifier. If people ask me, “who are you, what are you”, it's not the first thing that comes out of my mouth. The only exception was last summer. I signed up for a massage at a lovely hotel resort and they asked if I had had breast cancer. I was honest and they said we're sorry we cannot give you a massage but would I like a different treatment?
Regina: That's strange what was their reason?
Susan: I think because I'm Stage Four. Maybe they had a doctor’s recommendation that it would make it spread even more, but I honestly don't know.
Pat: Breast cancer definitely is a part of me but it doesn't define me.
Rachel: I have to agree. I don't let it define me either. Gosh, I'm a professional, a mother, a team mom of my children's baseball teams. People know that I've been through it, and know that I'm open about it, and if they want to talk I absolutely welcome that. It helps educate people and be more comfortable with the subject matter.
Nancy: Maybe I'm in denial, but I just want to talk about something else. I feel like I'm living it, day in day out. I talk to my doctors all the time, nurses, everything. So, when I'm in a social setting I just want to learn more about other people. I don't want it to define the conversation. I don't want it to define who I am. I'm going to get through it, and be stronger for it, and, like you said, appreciate every day.
Brianne: I'm thinking about many other people I've talked to where a lot of people feel like having this identity, or identifying that they've had this diagnosis puts them in a vulnerable position and that work then views them differently. And, it's amazing to hear, across the board, the exact opposite experience where identifying that this is what you're going through, and doing so publicly, feels like a badge of courage. Even a superwoman (laughs).
Nancy: It's funny you say that because just before I was diagnosed, I took a new position within the company. I had also been asked to oversee someone else's position in the company while they were on maternity leave. All of a sudden, here I am telling my boss, "Oh, and by the way I’m happy to do all of this, but I have breast cancer, and, you know, starting treatment." I didn’t want them to think I was gonna drop the ball. I didn’t want them to treat me differently. To be honest with you, work has given me more meaning than anything else. It makes me feel like I'm contributing. There's quite a number of people that go, "Oh, you shouldn't be working so late. You should be resting. You shouldn't be doing so much." I'm like, "But, this is making me feel whole."
Regina: Have you ever found yourself in a position where your friends are saying, "Gee, I'd just rather not go for a mammogram?" What do you tell them?
Pat: I for one didn't get mammograms until very late. I kept putting them off, putting them off. I didn't want quite all that radiation in my body. So I finally got the mammogram and it came back with breast cancer. If I had kept going with the same train of thought of not getting them, it would have kept, you know, kept going.
Anita: My mother doesn't want to go. I'm always like, "Mom, did you go. You're retired. You have nothing else to do but go to doctors’ appointments." I have another friend who's the same way. Just go and get it done, because let me tell you something. After you actually have radiation and all the surgery, it hurts a lot more than it used to hurt to get a mammogram done.
Nancy: Amen to that.
Pat: Listen, mammograms are so good now, too. They're getting better all the time. They hurt less and they see more.
Brianne: An oncology surgeon told me that you would not believe the number of people who don't show up for their biopsy. So, this is after they found out something on the mammogram. And, I think there's something very powerful about people thinking that if they don't know, they won't ever have to deal with it. So, there's a statement to be made about recognizing the fear.