Finding a New Kind of Normal
Baseball, support groups and getting in shape. Our breast cancer roundtable returns to talk about their health, their families and their goals
About a year ago, Eureka sat down with four women from Charles River Laboratories for a poignant, indepth discussion about what it’s like dealing with cancer. The conversation covered a wide range of topics: therapeutic options, insurance woes, clinical trials, finding humor (that’s right!) in cancer and the vital support systems (family, friends, co-workers) that help them cope.
Three of the women—breast cancer survivors Rachel Kiserow, Susan Desmond and Pat Mirley—graciously agreed last week to return for a follow-up interview. They were joined by roundtable newcomer Pat Seyffert, who was diagnosed with breast cancer eight years ago. In different ways, cancer has changed them forever, and not necessarily in bad ways. Cancer nudged them to go organic, work out, embrace baseball and adjust to a new kind of normal. Their days are filled working full-time, caring for elderly parents and school-age children, and dealing with more mundane health problems like torn knees, asthma and menopause, as well as side effects from the cancer drugs. Cancer is rarely far from their minds.
Here are brief bio sketches of the women and an edited version of the Oct. 6 interview with Senior Scientific Writer Regina McEnery.
Susan Desmond (SD), Associate Director, Events Management at Charles River in Wilmington, was diagnosed with breast cancer 30 months 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 (RK), a Human Resources Representative at Charles River's 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 oopherectomy since she was at risk for uterine, ovarian, and cervical cancer. She is currently taking hormonal therapy.
Pat Mirley (PM) has worked for Charles River for 39 years, where she currently serves as Business Support Manager in the North American Research Models Division in Wilmington. She was diagnosed with ductal carcinoma in situ (DCIS) of the right breast in 2003. Because micro-calcifications were in two different locations she was advised to have her breast removed, but leave the left one alone. Seven years later, micro-calcifications turned up in her left breast. Her oncologist wanted to order a biopsy, but Pat told them to just take it off. Her right breast was reconstructed in 2003 and her left breast was reconstructed at the time of the mastectomy, with follow-up reconstructions on both breasts.
Pat Seyffert (PS) is an executive assistant and 10-year veteran of Research Model Client Services in Wilmington. Doctors discovered her cancer eight years ago during a routine screening. “I was never one to get mammograms because I thought there was too much radiation, and in the old days I think there was, but I wanted to surprise my doctor,” she says. 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.
Anyone care to share some significant events, health-related or otherwise, that have occurred in the last year?
RK: I have not been feeling the greatest this last year. I have experienced a lot of side effects from the anastrazole [an estrogen-blocker] that I have been taking the last few years, including one symptom that I did not expect. I’m losing my hair…again. I’m turning 40 tomorrow and the hair thing was hard for me to grasp. I had to kind of mourn the loss all over again. The only solution is to stop medication, which of course is not an option. Other than that, things have been great. In the last year, I was promoted to HR Representative, and that’s been great.
SD: It’s been a pretty good, uneventful year, so we like that. In our cancer world we use the term NED which is no evidence of disease. So I remain there and hopefully will remain there for a long time. As with Rachel, I’m also taking an estrogen blocker. That is a daily medication that I take, but pretty much I have been able to focus on every day issues like the torn meniscus in my knee. I’m normal, right? … There has been no evidence of breast cancer recurrence. I go for scans every six months and you could say I have ‘scanxiety.” About a week before the tests it just really kind of takes over. There is not a lot I can do to stop thinking about it. I try listening to music and obviously talking to my husband helps keep me balanced. He’s been to every appointment with me from Day One. I’m hoping as the years go by the anxiety will lessen.
PM: I go for yearly physicals, but beyond that there is nothing else my cancer doctors need to do at this point. I also have knee problems. It has just been every day challenges of having elderly parents and worrying about their health. They live right above me, so it’s good that I’m that close. I’m the only child. My father is 92 and my mother 86 and they both have their medical issues.
PS: In the past year, I have made dramatic changes health-wise. I have lost 77 pounds and I walk every day. I have a rule that I can’t walk less than three miles and I try to do more every day. I’m proud of that. And you know that Global Corporate Challenge [fitness] program helped me a lot. I had just started walking when that began. I joined it and really participated every day.
Was the weight loss part and parcel of getting healthier after breast cancer?
PS: I did it because I was so overweight, and my doctor pointed out that weight is a risk factor for cancer and for cancer recurrence.
RK: Any issues with lymphedema, Pat?
PS: When I finished chemotherapy I thought I had it in my left foot, but since I’ve done this exercise program, it has reduced and almost disappeared.
Can we talk a bit about your support systems?
SD: My family and friends are at the top of the list in helping me through it, and I had done support groups previously so I knew it would be a good outlet for me. I go probably once a month. Sometimes I don’t even say anything, sometimes I share. For example, just the other day I wanted to know how long people give themselves to think about cancer every day, because I’m still at a point where I think about cancer every day.
PM: I can see how you can think about cancer every day because you see it in yourself. At least I know I do with the mastectomies—and yes, I had breast reconstruction—but you still see it every day. You never stop thinking about it. It’s always there. You get out of the shower and you think, ‘Darn, I’ve had cancer’. It just kind of stays there in the back of your mind.
RK: It becomes a part of your identity, at least for me. I may not talk about it all the time, but it always brings up some sadness, and the trials and tribulations of having gone through it and still going through it. When I talk to newly-diagnosed friends and family members or acquaintances, they realize that after a bit of time, my life has changed. It’s never going to be the same again. We get treated and all that, but cancer has lifelong implications.
SD: We’re dealing with the new normal.
PS: Cancer does change you in different ways. I eat all organic now. I never used to think about organic, but then I thought, why eat all those chemicals because maybe that’s a reason why we get cancer. I would also say that cancer is always with you, but it’s never front and center for me. I don’t think about it every day. Maybe because it’s been eight years for me. I also think that if you have had a very hard time going through the treatment it has a bigger impact on you. I kind of went through it pretty nicely, without complications. I almost had the same stress from the hair loss as from the cancer. It was hard losing my hair. Hair is important to people.
PM: That’s because it can be seen. You can cover up the rest of it. Hair is seen and people will look and think, that person has no hair, she must be having cancer treatment.
PS: Cancer also makes you more appreciative of what people do for you. I live alone so I went through it alone. People here would make me food. On bad days, I just had to go to the freezer and it was all there for me. People don’t realize what the little things they do mean to you.
How are your children coping? Do they ask about it?
RK: My 12-year-old thinks about it more. When I was diagnosed he was old enough to understand it was serious. We don’t talk about it a lot at home, but last year he decided he wanted to wear my pink tutu that I wore for breast cancer awareness for Halloween. I said he could be the pink superhero. We made him a pink cape. He did it because he wanted to do it for his mom. I think my kids are also more aware of what it means to have cancer. My youngest son’s second grade teacher was diagnosed recently. We would write her cards, and give her hugs and let her know she was loved.
SD: My two daughters are in high school. They recognized what I went through but my husband and I tried to keep life normal. We tried not to make a huge deal with it. It’s not a daily topic. My daughters haven’t gone to support groups with me, but they do come out for a support walk we do in Lowell.
Are you inclined to make goals and how has your diagnosis influenced them?
PS: Once you are out of treatment, I think you become positive again. I don’t live my days dreading or preparing. I think you go back to a normal. It’s a different normal, but it’s not an every-second-of-the-day-I-have-cancer normal.
SD: I’m still a little too close to my treatment to feel that, but you want to support others because you know how much it helps you. Small things like planning vacations keeps you forward-thinking. That’s important in keeping that positive attitude. For me, setting a summer time goal tells me I will be here.
PM: I try to live every day the best I can. You learn to appreciate everyone more, find the good in people and not the bad.
RK: I have bigger goals in mind that have not changed since being diagnosed. What has changed is the person I used to be before getting sick, always trying to prepare and to make sure everything was perfect. That person is gone. We are going on more vacations, and we are making time outside of our busy days to be together. My children both play travel baseball and I have to say I always found baseball boring. But then my children started playing and I remember going through treatment and not feeling well but still getting to the baseball field because I wanted to see my kids play. A big part of my recovery has been baseball!
Finally, there’s been a lot of discussion about the cancer moonshot. What should it focus on?
PM: Finding a cure or a vaccine.
PS: Metastatic disease.
SD: Metastatic breast disease. That is what kills.