Written by Sarah Brewer
I met Beth, who has metastasized ovarian cancer, and her partner and caregiver Cheryl on a sunny June morning near Cornell. Beth started her oral history with her experience with her first cancer diagnosis and treatment.
Beth had a history of endometriosis and ovarian cysts. Eventually, a routine check-up with her doctor led her to get a dilation and curettage (commonly referred to as a “d & c”), during which the doctor couldn’t get through to her cervix to do the procedure. Beth then scheduled an appointment with a gynecologic oncologist to perform the d & c, since the specialist was better equipped to handle cases like Beth’s. At this point, though, no one suspected cancer.
The results from Beth’s d & c indicated that she had uterine cancer. Upon learning this information, she was handed a stack of information about next steps. “When I received the diagnosis I was shocked,” Beth said. Cheryl added, “Yeah, you were in shock. You cried. You were just in shock, and after that, everything was just a blur. There were all these things to do.”
Beth was diagnosed in May 2009. She had surgery to remove the cancer. Upon waking up from the surgery she was told that she also had ovarian cancer. She remained in the hospital for five days, so weak that she was unable to even dial a phone. When she finally got home, her doctor called her with the best case scenario: both cancers were stage 1 (stage 1b for uterine cancer and stage 1c for ovarian cancer). A few weeks after her surgery, she started chemotherapy. One week after her first chemo treatment, she was laid off from her job.
In the coming months, and eventually years, Beth and Cheryl struggled to make ends meet and pay Beth’s medical bills. Insurance coverage complications added stress during this time, as the bills often arrived inaccurate, creating additional hassle as both Beth and Cheryl tried to get a grasp of what the costs should actually be for various treatments, doctor’s appointments, and sessions at the wound clinic.
Beth also visited the Cancer Resource Center for the first time as soon as she got back in Ithaca, the same day as her diagnosis. She soon learned that within the cancer research community, she was considered a young adult with cancer. There is much less research available on the experiences of individuals ages eighteen to forty who have cancer and undergo various treatments. As a result, young cancer patients often feel increased uncertainty in light of the lack of information and statistics available about their age range compared to older patients. As Beth began to experience what it is like to be a young adult with cancer, she decided to co-facilitate a new support group at the Cancer Resource Center specifically for this population.
The Young Adults Group at the CRC was quickly populated by CRC clients ages eighteen to forty. Beth says the conversation in these groups is a lot different because everyone present is in a different part of their life than patients in other groups. While talking about the group, Beth mentioned, “We don’t say ‘I’ve had a good life and I’m ready when the time comes’ because it’s not like that. We talk about what it’s like to have just bought a house and get a cancer diagnoses, what’s it’s like to have cancer and just to be finishing our education, what it’s like when we haven’t even had kids yet.” The Young Adults Group was also the first at the CRC to invite caregivers to group meetings, and Cheryl has been able to participate in the meetings since the group’s beginning.
In May 2013, Beth was eager to get to the five-year mark for her diagnoses with cancer when she received routine bloodwork and scans which showed that the cancer was back: there was another tumor. “That’s when I got scared, because everyone knows that ovarian cancer is the killer”, she says quietly. She had surgery again. Due to the amount of scar tissue in her abdomen, what should have been a simple two hour laparoscopic surgery, ended up being a six hour open surgery with two surgeons. However, the biopsy of the tumor showed no cancer. Her doctor had told her that she couldn’t believe it because everything that she had experienced in her medical career taught her that what she removed was cancer.
One year later, in the fall of 2014, routine testing showed that the tumor was back. This time, instead of surgery, a needle biopsy was completed. The biopsy confirmed that the tumor is ovarian cancer. Further follow-up appointments and preparation for surgery led Beth’s doctor to conclude that it was inoperable due to being a highly risky procedure. This most recent diagnosis has affected Beth and Cheryl in ways distinct from the first.
When I asked Beth and Cheryl how having cancer has changed their lives, employment, and relationships, they both smiled in a way that indicated to me that everything has changed. For Beth, between the two cancer diagnoses, surgeries, and three to five doctors’ appointments each week for long periods of time, consistent employment has been nearly impossible. She was able to form her own dog-sitting business which gave her the ability to earn some income while working from home. Eventually though, Beth had to stop her dog sitting business and in August of 2015, quit full-time employment because treatment for cancer this time was too taxing. Both Beth and Cheryl mentioned that they have definitely lost some friends due to cancer, and Cheryl added, “They just don’t get it, because they are young and they might know a grandparent or an aunt or uncle who had cancer, but they don’t understand how much time cancer takes to take care of, and so we lost contact.”
Cheryl stated that Beth struggles with executive functioning, a set of skills including attention control and working memory, which were never a problem before Beth’s treatment. For example, there are times when Beth has trouble focusing long enough to sort the mail. Cheryl and Beth believe this may be a long-term effect from chemotherapy, which has been referred to as “chemobrain” but is understudied as an actual side effect.
Other effects of the cancer have included strain on family relationships and financial capabilities. “Cancer wiped out any savings we had, and then more,” Beth said.
Beth recollected the ways in which her second diagnosis further affected her and Cheryl. This time, they found they were more willing to accept help from others. Friends, Beth’s sister Aimee and folks from the CRC have helped out by cleaning, cooking, and driving Beth to her doctor’s appointments. Cheryl emphasizes, “We are the lucky ones” and details how much these things have meant to her and Beth as they go about daily life and try to think about how to best spend their time. Beth made a list of things she hopes to do, and recently traveled cross-country by car, going through Wisconsin to visit friends from college, some national parks that she always wanted to visit, and then driving out to California.
Beth then discussed how the second diagnosis with cancer has changed her ability to talk about death. “I wouldn’t even be able to mention it in this conversation, but I’m in a place right now where I can do that, and that’s new.” With the help from a close friend, Beth has been able to start making arrangements for her funeral to help ensure things that things are what she wants them to be.
Support from community resources has been essential to Beth and Cheryl over the last seven years. Beth talks about a new computer she received from a local organization, so that she is now able to stay connected with the rest of the world. In addition, Beth and Cheryl have received gas cards and grocery cards to make ends meet.
Our conversation turned towards Cheryl’s role as a caregiver for Beth and her journey living with and loving someone with cancer. Cheryl felt the biggest challenge with cancer was finding time. She stated, “It all takes so much time to make sure she’s where she needs to be, to figure out bills … and we don’t know how much time she has left.” She looked at Beth and said, “The research says she should not be here anymore … but here we are.” Cheryl’s words echoed the lack of research on younger patients with cancer, a topic which our conversation returned to a number of times. This emphasis demonstrated just how much this information is needed in order for younger patients and their caregivers to make the best possible decisions and plans.
Cheryl has recently begun to pursue her degree in healthcare administrative at Utica College. In part, her interest has been driven by watching Beth go through her experience with cancer and serving as Beth’s caregiver. In addition, she wanted to strike a fine balance between pursuing her passion for helping others and also making enough to financially support Beth and her own needs. After considering careers in social work and nursing, healthcare administration seemed like the best fit. Online classes have allowed Cheryl to continue working full time, but she says, “Everyone says you should take time for yourself, and that’s just not realistic,” adding, “I have to work, I need to take care of Beth, I need to take care of myself. But we’ve gotten to a better place where we can afford little things.”
Both Beth and Cheryl were quick to point out the ways in which they have been lucky in terms of the community resources, family members, and friends which have supported their needs, particularly in light of Beth’s second diagnosis.
To emphasize what can be done to prevent cancer, Beth’s advice to women is to “Get your test on time, just go get your papsmear. It might be tempting to not go to it, but it’s so important. We don’t want to go to the doctor, but you have to.”
As we finished our conversation, Cheryl voiced, “The CRC people are family to us.” Beth interjected, “Our chosen family.” Cheryl nodded and said, “We could not do this without them. I don’t want to know what our lives would have looked like without their help.”