A diagnosis of cancer can be both a test and a testament of strength for the patients and the partners who see them through the greatest challenges of their lives.
“There is a lot of unforeseen changes that take place,” Licensed Social Worker Susan Hawk of Allen County Regional Hospital’s Home Health and Hospice said. “Role changes and changes in responsibilities can turn your whole life upside down.”
Dimity Lowell, Iola, and Laura Houk, Humboldt, know first hand of the toll acute illness can take on a marriage.
In 2008, during a routine pelvic examination, Lowell’s doctor detected a cyst. She was told to come back in a year, but she underestimated the destruction of what a cyst could mean to her life and to her body.
“I missed that next year,” she said.
She began to experience abnormal menstruation cycles, frequent urination and fatigue. She could feel a small ball that was painful to the touch on her right side. There was bloating that did not go away. She went to a local doctor in 2010 and was told she needed to get a CT scan that day. On her 40th birthday she got a phone call from her doctor’s supervisor.
“He said ‘this isn’t going to have a good outcome,’” Lowell said.
She telephoned her husband John and cried.
Lowell, like Houk and 20,000 other women a year, was diagnosed with ovarian cancer.
Houk was diagnosed with stage 3C of the cancer in 2013 after she went to the emergency room for what she suspected was appendicitis. She too had experienced abnormal bloating and other subtle signs, but results of a routine pap test prior to the diagnosis had come back normal. Ironically her husband Justin was laid off from his job on the morning Laura prepared for her first surgery where doctors would remove a mass and perform a full hysterectomy.
The women were prepared for how the disease would alter their lives and the lives of their spouses. Genetic markers showed that neither women had a tendency toward the disease.
For Lowell, test results of a CA125, which measures the amount of the cancer antigen 125 in the blood, came back with a reading of 2583.
“I will never forget that number,” she said.
She was told a normal reading was under 30. She was instructed to get her affairs in order.
Two tumors weighing a total of seven pounds were wrapped around her fallopian tubes, she said. Surgery to remove the tumors would reveal how far the cancer had spread throughout her body. Surgeons ended up having to remove 10 percent of her lymph nodes and she, like Houk, was given a diagnosis of stage 3C.
For a year both women endured chemotherapy treatments with their husbands by their sides.
Once-a-week Lowell would have to turn from her left side to her right side for nine hours at a time in order to “swish” the cancer fighting agent around her body.
Houk suffered chronic fatigue, a side effect of the Neulasta shots given to help reduce the risk of infection. Shortly after her initial diagnosis, she married Justin. The union commenced under trying circumstances.
“I had a wife that was existing in the bed,” Justin said during an interview in March.
Against the doctor’s orders, Lowell continued to work as a teacher at the ANW Day Co-op school in Humboldt.
“I had to work, I had to keep going, I had to keep living,” she said.
Houk required a second surgery to remove her spleen and spots from her liver and lungs.
“Finally it got to the point the doctors said, ‘let’s just stop (the chemo) and see what happens, your body needs a break,” Justin said.
Both women were disappointed when the chemo treatments failed to eradicate the incurable disease.
At one point Lowell thought she was out of the woods only to discover the cancer had spread to another part of her body. Again surgery was performed to remove all the lymph nodes, this time in her neck. Treatments of Avastin, a cancer medicine that interferes with the growth and spread of cancer cells, began.
“At that point my doctor told me I was a lifer,” she said. “I needed to stay on chemo for as long as I wanted the cancer to stay at bay.”
For the next four years she continued chemotherapy. In 2012, while dependent upon antibiotics administered intravenously, she became infected with sepsis. If that was not enough, she developed a hernia, which required more surgery. The site became infected and one day, while at home, her stomach erupted.
“I came up to her and all of a sudden her stomach like literally explodes,” said her daughter Caressa.“It was extremely scary.”
Her family rushed her to the hospital where it was deemed that she needed a blood transfusion. She remained there for more than a month, but throughout the year she would require six more transfusions. In 2013 she was told she would not live longer than six months to a year. She and members of her family started to live like she was dying, Lowell said. She resigned from her job.
“We took vacations, we did bucket lists stuff, we went water skiing,” she said “ I made so many connections with my family during that time.”
Illnesses for which there is no known cure force patients and family members to look at their own mortality, Hawk said. They affect the entire household. There is no known path of treatment and every case is different so there is more uncertainty. Even small children know things are not like they were, she said. They see the changes that take place within the household.
Lowell’s doctor moved out of the state and she was assigned to a different physician who suggested that she stop the Avastin treatments. She agreed, but once the treatments were terminated her CA 125 number rose again.
“ I prayed,” she said. “I told God that I was now looking for the miracle that was promised Ezekiel in the Bible. I wanted that miracle.”
Houk prayed that God would allow her to live long enough to see her youngest child graduate from high school. After the cancer began to grow again in March, she elected to stop taking a chemo pill, against her doctor’s wishes, because it caused her to sleep most of the day. The choice to stop the treatment was a big decision.
“I didn’t have a quality of life,” she said. “My body is just wore out from taking so much chemo.”
There are times she has felt anger with the disease for altering her life to the degree that it has. There have been moments of darkness in which she has contemplated the meaning of her battle. She suspects she may never know why she contracted the disease when so many other women do not.
Experiencing a full-range of emotions is not uncommon for someone battling cancer, Hawk said.
“Here you are with this illness, it’s destroying your family, it’s destroying your marriage,” Hawk said. “It’s not out of the ordinary for the patient to turn anger toward a loved one or even God.”
The cancer continues to linger in both Lowell’s and Houk’s bodies. For Lowell it has not grown in almost a year. She has developed diabetes though during the course of her battle and lost partial eyesight. She now struggles with seizures and high blood pressure. For Houk it has remained stagnant for three months. She awaits the result of a recent biopsy, praying that she will be a candidate for treatment with a parp inhibitor. Recently approved by the FDA for use in women who test negative for biomarker testing, the targeted drug therapy is a new treatment for recurrent ovarian cancer.
For Lowell’s and Houk’s husbands it has a been a journey of uncertainty and sacrifice. Fighting cancer can strain even the strongest of unions. Both men stopped working and became full-time caregivers to their wives. They took care of all the household responsibilities for years.
“I would have given up,” Houk said. “I could not have done it without (Justin). I know that.”
Assuming the position of caregiver took its toll, and for a brief time Lowell and John separated. The disease consumed the marriage and it was time to separate the caregiving role from that of a spouse.
“Everyone goes through struggles and lots of marriages don’t last through hard diseases or losses of children or things like that because it’s easier to take the easy way out. We have chosen not to and we have fought for our marriage hard,” she said.
Houk admitted that fighting the illness took the same type of toll on her marriage.
“Spouses sometimes wear themselves thin trying to take care of all facets of running a household, while working and taking care of the patient,” Hawk said. “They need to take time out for themselves.”
Often patients and their spouses are reluctant to take advantage of family and friends’ offers of help. But Hawk recommends that couples coping with acute illness should not feel ashamed to do so.
“Utilize the opportunity,” she said “Use your resources.”
Sometimes when a spouse becomes overly involved in becoming a caregiver, the normal husband-wife relationship becomes non-existent. Long-term caregiver is a role that can be even more trying for men who are typically prone to be “quick fixers.” Honest and open communication is essential, Hawk said.
“There is no blame on either part,” she said. “The blame is on the disease.”
Cancer-fighting couples should strive to keep things as normal as possible. Even when the patient is too sick, making sure the children still participate in their activities is important. Although time may be limited by sickness or side effects, family members, especially spouses, should strive to include the patient in normal activities.
“Going for a ride or eating dinner or watching a movie, sharing those moments is pretty special,” Hawk said.
There is nothing wrong with a spouse playing the role of caregiver, however, Hawk stressed that education is essential. A diagnosis of cancer is scary and a cancer with no-known cure brings with it even more uncertainty. Patients and their spouses should seek understanding from a number of sources beginning with their physician, Hawk said. Conducting research, speaking to a pastor and joining a support group can be valuable resources.
“Education plays a huge role,” she said.
Living on a Prayer
