Learning to Live With Cancer
Four women reflect on the disease that changed their life and made them stronger.
Cancer research has never looked brighter. Targeted therapies, especially targeted immunotherapies that activate a patient's own T cells to kill tumors have gained steam in recent years. Personalized medicines are becoming more popular, too.
But the job of surviving cancer isn't getting any easier. It requires a lot of emotional muscle. So even though Eureka primarily focuses on the science, we decided to put a human face on the disease for a change and sit down with four women at Charles River who faced cancer head on. The women talked about their diagnoses, their support system, what shocked them and what inspired them. Senior Scientific Writer Regina McEnery moderated the discussion, excerpts of which are found below along with brief bios of the women.
Meet the Women:
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.
Susan Desmond (SD), Associate Director, Events Management at Charles River in Wilmington, was diagnosed with breast cancer 18 months ago. She underwent chemotherapy, a mastectomy, radiation and is now in the process of breast reconstruction. Her tumor was estrogen receptor positive, so she also takes hormonal therapy every day.
Pat Mirley (PM) has worked for Charles River for 38 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.
Katie Sullivan (KS) has been with Charles River in Wilmington for 7 ½ years. She is a Corporate Vice President in the Finance Division. In early 2014 she started losing weight and feeling nauseous. Then her skin began turning yellow. She ended up in the emergency room, where a CT scan detected a mass on the head of her pancreas. Pancreatic cancer has an extremely low survival rate, in part because it is difficult to detect in the early stages before it has spread, but Katie's tumor was potentially resectable. First, she had to undergo chemotherapy and proton beam radiation to shrink the tumor. Then she underwent a Whipple procedure to remove the tumor. The cancer has since traveled to her liver, but she is on another chemotherapy regime and doing well.
Has cancer made you stronger and if so how?
RK: It absolutely makes you stronger. I see life differently. I was always pretty positive but I'm even more so now because I realize life can be fleeting. If you had asked me before I was diagnosed, do you think you could go through something like this I would have said no, but now I know I can pretty much do anything.
PM: All I can say is, thank God for family and friends. They help make you strong for those days when you are weak and ready to give up.
SD: I am almost taking things a little bit lighter now—enjoying the moment and trying not to sweat the small stuff.
Speaking of the lighter side, how do you keep your sense of humor?
KS: Humor is really helpful. I tell people there is a silver lining in every cloud […] that I always wanted to lose weight.
PM: And I got a tummy tuck and perky boobs. […] You have to find humor or you would be down in the dumps every day.
Did you encounter any problems with insurance companies?
KS: Talk about being funny, I was trying to get my short term disability approved. One of the representatives woke me up from one of my chemo naps and said you know the average disability time for a person with your condition is four weeks. I said that is because they all died so you'd better approve the whole time for me. But mostly I found that if I had any problems I could call someone up from HR and they would figure it out. I found that the folks at CRL were extremely helpful in getting through any red tape.
SD: I did have one hiccup. I was supposed to have my ovaries out to help stop the estrogen production. However, I was also on tamoxifen and there were all kinds of new studies suggesting tamoxifen can cause uterine cancer, so my surgeon recommended a whole hysterectomy. The night before my surgery, my surgeon called and said the insurance company wouldn't approve the procedure. I was a little out of sorts so I started downloading studies on tamoxifen and built a bit of a case and sent it to the insurance company. And they did approve it.
Have any of you participated in a clinical trial?
KS:I was in a clinical trial that used a combination of neoadjuvant therapy and proton radiation to shrink the tumor and to enable the Whipple procedure. My oncologist said they will look for other trials for me to join if the chemo regimen I'm on now stops being effective.
Who was the first person you told you had cancer and what was their reaction?
PM: My husband. He was there with me. He kind of took control as I was falling apart and asked a whole bunch of questions. I was just so numb. The second person I told was my sister-from-another-mother, Sue. She was there for us through it all.
KS: My husband was the first one I told. He wouldn't show his emotions in front of me, but he could with his siblings, particularly one of his sisters who is an oncology nurse. He had gotten laid off two weeks before I was diagnosed. He stayed home with me while I was getting chemotherapy and recovering from surgery. He was a godsend.
RK: I told my husband first but I was actually by myself when I learned my diagnosis. My husband, when he is stressed out, can be abrupt and short, but he was my rock. Rather than lose my hair to chemo I decided I needed to shave it off myself, so we went to a salon. He joked the entire time to prevent me from crying.
SD: I was sitting in my office here in Wilmington when I got confirmation. I managed to keep it together and take lots of notes. Then I drove home and called my husband. I knew once I talked to him I would break. He was my rock. That same day I started making consultations. I was in that mode that this is what I need to do to stay healthy. I wanted the best advice and opinions.
How did you find your doctors and cancer centers? Are you satisfied with them?
SD: My oncologist at Massachusetts General had an incredible bedside manner. She was the first medical professional who took my hand and said 'I'm sorry this has happened to you.'
KS: I had a wonderful oncologist. I found the surgical staff interesting. The lead surgeon— he was excellent and I felt very comfortable with him—but the residents who worked for him I found kind of cold. The surgical team did an excellent job, and I came out of surgery very well. And nurses make all the difference. I have been with my chemo nurse for 19 months. She has been wonderful. Always knows what to say, offers good advice.
PM: I have nothing but praise for all those people who held my hand and said you would be OK. You really do have to lean on your doctors and believe in what they tell you to get through this.
RK: My nurse navigator was huge for me in my recovery. She had been through everything that I was about to go through and I leaned on her quite a bit.
How did you break the news to your children?
RK: My children were 5 and 7 at the time and to be honest, at that age, they don't need all the details. My nurse navigator told me to bring them someplace where they would feel secure and happy, and then tell them what's going on. So we took them for ice cream. My 7-year-old was worried from the get-go. It was my job to convince him everything would be fine. That is all he needed. He still likes ice cream till this day so I guess it didn't traumatize him.
SD: I have two teen-age girls and I second the motion that they don't need all the details. When I had my chest port put in, they knew I was going in for a procedure, but they didn't know this was to make the chemotherapy easier.
Did any of you face stigma?
PM: I had one who person who said to me, you know you didn't have real cancer. I sat there stoned-faced. It doesn't matter what type or treatment you have it is still breast cancer.
KS: Someone said to me, you know I envy you the time off you are having. Did they realize how sick I was? I didn't know how to respond to that.
RK: Anyone who has had anything negative to say kept it to themselves. But I did have acquaintances who didn't know what to say. Your first instinct when you are diagnosed is you're alone in all of this, but that is not the case. One of my dear friends remembered all of my chemo days. Every time I would go into that dreaded room she would text me, 'You got this, you are a fighter.'
What particular moment do you return to for comfort?
PM: The day I came home after my first surgery in 2003, I had a binder [similar to a corset without strings, but with Velcro] and fours drains. My husband went to Lady Grace and asked if there was any underwear with a binder attached that could help me. He didn't care that he had to go in and talk with all these women.
KM: I had really bad neuropathy to the point where I was having trouble walking. I got stuck on the stairs one day and my husband had to come help me up the stairs. For a month after that I couldn't get up and down by myself. He needed to be right there. He has been giving me injections now for 19 months.
RK: With so many horrible accidents and so many tragic events in the news you can lose faith in humanity. This whole diagnosis and the journey showed me the opposite. I remember one time when I was about to have my double mastectomy my husband and I were sitting, pen in hand, figuring out how we were going to survive financially. The telephone rang and it was my supervisor at the time. She said 'Rachel, you are going to be covered.' Strangers had donated so much vacation time that we were OK.
What advice do you have for women facing cancer?
KS: If you are feeling off, go to your doctor and keep pushing to find the reason you are not feeling well. I felt weak and tired months before I was diagnosed. I thought it was just because I was working so much and doing so much for my elderly mother.
PM: Get your mammograms done early. My cancer was found when I was 43. Had I waited until I was 50 it would have been a lot worse.
RK: Everything I was taught about how to do breast self-exams seemed overly-complicated. I tell women now, just get in the shower and feel. If something is off you are going to know it. If you find it faster and get help sooner you'll be ahead of the curve.
How to cite:
McEnery, Regina. Learning to Live With Cancer. Eureka blog. Oct 13, 2015. Available: https://eureka.criver.com/learning-to-live-with-cancer/