To know Victoria Kuskowski is to know someone who embraces life. A mother of two beautiful young children, an artist, a naturalist, a graphic designer, a loyal friend, and wife to her high school sweetheart, Tom, Vicki is a force in the lives of everyone she touches. Near strangers tell her their most tragic secrets. Neighborhood children call her house their second home. If you asked the local elementary school, you would surely find Vicki’s name as an often-cited emergency contact in case a parent can’t be reached. At 44, her life is good and rich, and filled with the normal tribulations of raising strong willed children in a place where winter days are regularly sub-zero.
In the summer of 2016, Vicki found a lump. The discovery took her spiraling deep into the health care system as she navigated the complex maze of treatment. She talked with us about her incredible path on becoming a survivor of breast cancer.
One thing I wish I knew about breast cancer 10 years ago
For many women, the only thing you know when you get your physicals is that it’s important to do a monthly breast exam to check for lumps beginning at age 20, and to have a mammogram every year when you are over the age of 40, according to the American Medical Association. A five-step guide about how to do a breast self-exam is here. According to Breastcancer.org, symptoms can vary considerably. It can manifest in skin changes like puckering and dimpling, or a lump, but sometimes the lump is so small that it can only be detected by a mammogram.
“Most women don’t know much more, because who wants to think about that?”
But along with breast cancer awareness, it’s important to know that there are different kinds of the disease. Some people are predisposed genetically and some are impacted by environmental factors. For example, women who consume one alcoholic drink per day have a 7-10 percent risk increase. The risk for women who consume two alcoholic drinks per day increases by 20 percent, according to the American Cancer Society. There is a spectrum of diagnoses and an equally broad spectrum of treatments.
“I was lucky because I did find a lump in time to treat it aggressively. I didn’t know anything about breast cancer and very quickly I learned that I had the BRCA1 genetic mutation. My grandmother on my father's side died of what was said to be uterine cancer when my dad was young. There were not many incidents of breast cancer in his family and also not many women were born into the family. So her history was not an immediate red flag. But since I was diagnosed so young, they did a test for both me and my mother and we learned I had the mutation and she did not. The BRCA1 mutation is strongly linked to ovarian cancer, and we now assume that my father’s mother had ovarian cancer that must have spread to her uterus. Thinking about my family and our genetics is an interesting way to think about ancestry. Family health history is like a map of your body and genes.”
How does it guide how you mother your daughter?
“When Edie is old enough, Tom and I will explain the BRCA1 gene to her, I don’t know yet what age that is. I think we will encourage her to get tested to find out if she is predisposed to breast cancer, but I have seen how having this information early on in life can cause an immense amount of stress and worry.”
The BRCA1 genetic mutation means a genetically predisposed risk of breast and ovarian cancer. For some women who know that they carry the gene, their biological clock can tick more loudly and more insistently as ovaries are more predisposed to cancer cells, stressing the ability to have children.
“In a lot of ways, I am grateful I didn’t know my whole life. I didn’t have to live with that knowledge. I guess it depends on your personality, if you worry to begin with. When the time feels right, Tom and I will help guide Edie through it.”
As medicine evolves, we will learn more about different genes. “I don’t know if having that information is a good thing.”
What is the advice you give to friends who just found out they have breast cancer?
- Talk to a lot of different doctors. “It was important for me to get multiple opinions. I got ideas about adding a new or different drug into my protocol. I was able to learn about cutting edge research, especially in my case where my cancer was rare, and then I would go back to my oncologist and asked that we change my drug protocol a bit.” Our health care system has so many options it can be overwhelming or powerful – you need to choose what your mindset will be.
- Choose the right provider for you. “Even though it was stressful to get care at multiple hospitals and to manage the schedule and all of the driving, it was okay.” Piecing together your care is empowering to be able to choose the right provider for you for each step along the way. Having good insurance is a key part of that ability.
- Trust your gut. “If you get a vibe that you don’t feel great about your doctor, listen to your gut. Your doctor isn’t going to be your best friend, but you want to feel comfortable around them and you must be able to trust them.”
- Change doctors if you are not comfortable with them. “I went to Dana Farber, Dartmouth—where I had the opportunity to be a part of a drug study, and to Central Vermont Medical Center (CVMC) for radiation. The staff at both Dartmouth and CVMC were amazing, but I did not find an oncologist I loved until after chemotherapy was done. I'm so glad to have found my new oncologist at UVM Medical Center, even if it wasn't at the beginning of my journey.”
- Slow down. “Doctors want you to act as fast as you can when you have cancer, but you need to feel okay about what you are doing. If someone is trying to force you to do something right away that you don’t feel comfortable with, you can take some time and be sure you feel good about the decision you are making. I could have done my treatment in a different order, for example. There are a lot of different choices and approaches to your care.”
How did Blue Cross and Blue Shield of Vermont support you?
“Blue Cross was amazing. Having excellent insurance was the most important thing.” With a total cost of care running well into the six figures, not having high quality insurance can spell financial disaster for someone facing a disease like cancer. Blue Cross coverage alleviated stress about accessing whatever treatments were needed, allowing Vicki to go wherever she felt offered the best treatment.
“Being able to go to all of these different hospitals makes a huge difference. If I could only have gone to one hospital in Vermont, it would have felt hard. I felt like I had access to all of New England because of my health insurance, which was great. But going to CVMC for radiation was also a really positive part of my care. It was a comfortable space, close to my home, where everyone knew me and took incredible care of me. When I went to a specialty cancer hospital in Boston, I felt like I was part of a cog in a giant wheel. I got to experience all different kinds of care and was able to piece it together the way it worked best for me, even though it was a lot of pieces!”
The importance of a support network
“Having a support network often felt like it was more important than the treatment, as far as my mental health and for my family.” Calling themselves the “Sunshine Train,” friends organized a rotating calendar where someone took responsibility for showering Vicki and her family with love and sunshine for three days on a rotating basis for a year. They sent cards and flowers, they made mix-cd’s to accompany her on the long miles to Dartmouth, they sent a joke or a funny story. They created a collective of prayer flags with personal messages of love and strength that came from California, New York, Washington DC, New Hampshire, and the next street over. They dropped off healthy, home-cooked meals or sent gift certificates for take-out if they were far away. Not a week went by when the family felt like they were going through the process alone.
“My support network was what got me through, it’s just super important.” Organizations like Meal Train make it easy for family and friends to organize a long-term calendar, to share ideas, and for the person they are supporting to post updates in one central location. “Now when a friend or acquaintance I know is facing cancer, it’s something I am really aware of—they need support.”
If you take the time to search them out, there are many resources for people fighting cancer. Talking to nurse navigators and social workers can lead to a wealth of information. Making use of all the members of a care team helps you discover what resources you have access to.
“One month the hospital helped us to pay our mortgage, it was incredible. The social worker and nurse navigator have all these ways to support us—from mortgage help to gas cards, all sorts of ways both big and small.”
The strengths and challenges of managing care in Vermont
A benefit of health care in a small, rural state like Vermont is the care itself. “At CVMC, my daughter would come with me so we could spend time with just the two of us. It was always the same amazing nurses and the same staff. Dana Farber felt much different—less personal because it’s such a big place.”
“One of the biggest challenges is that the electronic medical record system is awful! Why can’t they all just talk to each other? Why aren’t the systems aligned?”
We live in a region where health care is intimately connected. “[Policy makers] should demand that our entire health care system is on the same electronic medical records system.” During an emergency, Vicki faced a surgery that held lifelong consequences because her surgeon didn’t have a basic detail of her medical records. The surgeon had to go in blind because the doctors were not able to communicate with each other and the new doctor did not have access to her history.
What does being healthy mean to you now?
“I feel my healthiest when I am consciously eating—when I make good decisions about what I put in my body and not eating too much. The biggest key is moderation in all things, and to exercise every day.”
Finding motivation for exercise can be tough, when life gets so busy with work and managing all of the pieces of a family and a household. Getting excited about the exercise you are doing makes it easier to do it and it is more enjoyable.
“I am taking tennis lessons, which is new and fun. I am trying to challenge myself to do new fun things when I exercise.” Your local recreation department often offers new and interesting ways to get motivated to move your body.
Mental health is critical, especially during this time of so much uncertainty. “Limiting screen time, limiting how much I listen to the news, simply looking at my phone less. Getting outside in nature is a big one for me, giving myself time to think outside.”
“We are trying to make every week special by doing new kinds of things—we can’t go a lot of places now, but I am playing new games with the kids, and we are trying things we don’t normally do. A big part of recovery is taking care of my brain health too.”
To learn more about steps you can take to lower your risk, visit the American Cancer Society.