Health and Fitness

Dealing with unknowns when a family member has cancer

Story and photos by Cindy Brown
Posted 3/19/20

My world changed radically on a December morning last year. I was on my way to the toy store to finish my holiday shopping before heading to Colorado …

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Health and Fitness

Dealing with unknowns when a family member has cancer

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My world changed radically on a December morning last year. I was on my way to the toy store to finish my holiday shopping before heading to Colorado tocelebrate Christmas with my family.

My sister called to say that that my mom, Barbara Brown, had gone to the emergency room that morning and had been diagnosed with ovarian cancer. It had metastasized. That is: it had spread beyond the ovaries into the abdomen where it had begun to cause problems with her digestive system.

Metastasized is one of many words that I have had to learn - not only its definition but also what it means to a person who is now a cancer patient and to the family, whose priorities in life must necessarily shift in an instant.

I did go to the toy store but in a very much altered state of mind. I felt like I had been hit in the stomach. It seemed hard to breathe and to concentrate on toys for my nieces when life suddenly seemed so serious.

We spent Christmas in the hospital where my mom was being treated for low sodium levels and other symptoms of the cancer. She had to stay in the hospital for a week to have a biopsy done that would show more about the cancer and, it was hoped, begin some sort of treatment. Three of her grandkids spent the day playing games in the hospital room and we opened presents - in some ways just like our usual holiday celebration but very different in so many ways.

When the first biopsy failed to produce results, we all advocated for another biopsy to be done immediately and for my mom to be allowed to go home. After a week in the hospital and the lack of sleep caused by the frequent checking of vital signs, she was exhausted and beginning to lose her natural optimism.

Her bed moved all night - an innovation to prevent bedsores but with the movement and the whirring noise that came with them, she had not been able to sleep. She was finally able to go home from the hospital and I stayed on until I had to return home to Taos.

A frequent cancer

About 21,750 women will be diagnosed with ovarian cancer this year in the United States and it ranks fifth in cancer deaths among women, according to the American Cancer Society. For all women, the chance of getting ovarian cancer is about 1 in 78. It mainly develops in women 63 years old or older. White women have a higher incidence of ovarian cancer than Hispanic or African American women.

About 1.8 million people in the U.S. are diagnosed with all types of cancer every year. New Mexico has one of the lowest rates of death from cancer in the nation, ranking 44th of 50 states, according to the Centers for Disease Control and Prevention.

Chemotherapy

I returned to Colorado a month later to take my Mom to her second chemotherapy session. She received her treatment at the Franklin Medical Center in downtown Denver. On the 12th floor with 360-degree views to the mountains and the city, there is huge room for chemotherapy infusions.

I was shocked by the number of people being treated at just this one center. People of all ages, but primarily people in their 60s and beyond were there. The room is filled with patients, along with family and friends there to support them. The length of treatment and type of drug depends on the cancer. Everyone brought with them their own form of comfort: their phone, a book, something to eat or drink. Some watched the news or a movie on their phones, but mostly it is quiet with hushed conversations, interrupted by beeping of equipment signaling time for some action by nurses.

The lucky ones got to go home after a short treatment; others were there for most of the day. At least one person receiving chemo was planning to go to work right afterward.

My mom received two infusions to control nausea and two to treat the cancer that day. I've learned the names of chemo drugs like carboplatin and paclitaxel. Chemotherapy works by killing cancer cells or stopping them from multiplying. It works best on cancer cells that are rapidly dividing.

If you or someone in your family has been through chemotherapy, you know how devastating it can be to a person's body. Although the effects vary due to the condition and the treatment, in my mom's case, the doctor told her that she would definitely be tired and she would lose her hair. The doctor also discussed the many possible things that would happen.

My mom, who is in her 80s, became extremely tired and weak. She lost her hair almost completely after the second treatment. Because hair cells multiply rapidly, they are also impacted by chemotherapy. In addition, she developed mouth sores that made it hard for her to eat. She experienced some nausea that was managed by the infusions and pills taken when she felt sick, but sometimes she didn't feel like eating for a couple of days. The symptoms seemed to get worse after each treatment.

Support

While she was getting chemotherapy, Mom was visited by two people from the Supportive Care Department of Kaiser Permanente, a social worker and a doctor, who focus on symptom and pain management and emotional health.

When asked about her emotional health, Mom said that she couldn't imagine surviving the cancer and treatment without the support of her three kids and four grandkids. My sister, Brenda, lives nearby in Colorado and my mom has been staying with her after treatments when I'm not there. My brother, who is in Hawaii, has already flown out once to stay with Mom and will be back in the coming months.

The supportive care social worker, Milissa Barres, says, "The effects of the treatment are different for everyone and what it takes to feel supported is different, too. Family support can help keep spirits up."

Although my mom has the support of her family, there are still mental and emotional impacts that go beyond the physical pain and discomfort. Mom has always been an upbeat energetic person. It's been hard to see how the cancer, the treatment and the worry have made her almost lose hope at times.

My brother says the hardest thing for him is knowing what our mom is going through and that being far away can make it harder. For me, it has been heartbreaking to watch my mom suffer. It's difficult to believe that chemotherapy is the state of the art for cancer treatment; it seems so cruel and inhumane.

I'm headed back to Colorado again to take my mom to the appointment at which we will learn if the chemotherapy treatments have slowed or stopped the spread of the cancer. Only time will tell if all the effects of the chemotherapy will be worth it and if it will help her recover.

Genetic markers

In some cases, people carry genetic markers that indicate they have a greater chance of developing cancer. My mom will be tested at some point to see if she carries any of those markers.

"If a parent tests positive for a genetic marker for cancer, we recommend that the children meet with a geneticist to explore the possible implications and getting tested as well," says Dr. Karen Kogel, MD, who has been treating my mom. "All of the children should consider testing, as men can carry a marker associated with ovarian cancer and pass it on to their kids and some markers are also associated with prostate and other cancers."

Here are some things I learned:

If you or a family member develops unusual symptoms, see your regular health care professional.

Ovarian cancer is hard to diagnose at early stages because it may be without symptoms until it has spread. My mom began to have bloating and swelling in her abdomen months ago but accepted these things as a normal sign of aging. I learned never to accept something that causes you pain or discomfort as a normal sign of aging. Listen to your body. If something feels wrong, get checked out right away.

Kogel says that the warning signs can vary depending on the type of cancer. "The biggest thing I see that causes a delay in the diagnoses of cancer is that a person will see their primary care provider for a nonspecific complaint like belly pain or heartburn. The doctor may suggest some remedies and recommend the person return if the remedies aren't effective. If the suggestions don't work, the person may not return to the doctor, which causes a diagnosis to be delayed. We don't order a CT scan [computerized tomography] the first time a person has heartburn, due to the risk, cost and hassle. However, if the problem is not addressed by other treatments, the condition might warrant further investigation."

Routine screening tools like mammograms or colonoscopies can help both prevent cancer and lead to its early diagnosis, when it is much easier to treat and the outcomes are better for the patients.

Insurance matters

The bill for my mom's hospital stay was more than $70,000. She will have to pay $1,500 plus numerous other fees for medication, chemotherapy, scans, and office visits. With insurance, the illness will have a definite impact on her finances. Without insurance, there is no way she could afford care.

Tough decisions

Last week, my mom had a CT scan to determine whether the first round of chemotherapy treatments had been effective in stopping the ovarian cancer. The results showed that while a few of the tumors had become smaller, there was no change to many of them and, in fact, some of the tumors had become larger. The scan also showed that she had fluid accumulating in her abdomen and near her lungs.

The fluid and also low oxygen levels caused difficulties breathing for Mom and after two sleepless nights, I took her to the emergency room for help. We were reluctant to go to the hospital due to the threat of coronavirus. While they were there, a case of coronavirus was reported at the hospital. There were strict guidelines in place at the hospital about hand-washing and sanitizing. Anyone who was sick was prohibited from visiting.

At the hospital, Mom was admitted and given oxygen and a diuretic to help drain the fluid. After staying for several days, she was able to go home.

Because the first approach to chemotherapy didn't prove effective, another chemotherapy drug called Doxil has been recommended by Kogel as a possibility. It only has a 20 percent success rate and may impact the heart negatively. My mom and our family now face some difficult decisions.

Cindy Brown is a frequent contributor to the Taos News, writing stories about trails, the outdoors and health. 

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