Who is the Cancer Caregiver? The Unsung Hero
The cancer caregiver serves a critical role on the journey to recovery. Often times it's a family member who takes care of the patient. Read how Jacqueline helped her father through Stage 3 Prostate Cancer.
“First thing I want to do is get the right steps and know the best options to treat my father,” she said.
But her caregiver duties had an even more difficult task. She needed to maintain a cool composure despite deep worries.
“The second thing going through my mind was…how to calm my father down in order to decrease his stress and anxiety.”
As the cancer patient, Baba became depressed. He faced a double layer of confusion because of the language barrier. He needed more time to comprehend his diagnosis.
“So my role was to calm him down,” Jacqueline said. “Decrease the effect of the news and just keep him positive.”
The cancer caregiver tried to paint a more upbeat picture.
”Prostate cancer is not as deadly as pancreatic cancer,” Jacqueline explained to Baba. “And prostate cancer grows slow. And we will operate the next day. And the recovery is better unlike other cancers.”
Under the grave situation, Jacqueline became a fortress against emotional turmoil. She needed to tone down the fear and sadness expressed by family members.
“Sometimes the stress of the family members is higher than the patient,” said Jacqueline.
“They don’t understand the situation and how it should be handled. So sometimes the family members cause the patient to be stressed, because they become overreactive.”
Jacqueline had to be strong during critical moments.
“My mom was crying all the time. That made my dad ask, ‘Oh my gosh, what is happening?’ [He got] even more confused.”
The cancer caregiver continued to allay everyone's fears.
“I would said, ‘It’s easy, it’s fine.’”
Caregiver serves as Patient Advocate
As the caregiver Jacqueline also advocated for Baba during doctor’s visits. During the patient’s vulnerable period, the caregiver exercised better judgement under pressure.
For example, the family had to find a different surgeon for Baba. Initially, the family doctor referred a surgeon who was too busy to take on more patients.
Jacqueline took charge of going ‘doctor shopping.’ The chosen surgeon took the time to talk with the caregiver over the phone with Mama, her brother, and Baba.
Two days after the diagnosis, the family agreed on the treatment plan: Remove the prostate gland and surrounding tissue.
The surgeon talked in-depth with Jacqueline. She asked questions based on her medical readings.
“I seek more explanations. ‘Why are you doing it? How are you doing it?’ At the same time, I try to translate all the positive things to my dad.”
Meanwhile, Baba suffered from high emotional distress, according to Jacqueline. Despite talking with the surgeon, the patient was too anxious to fully understand the next steps.
“He can’t judge what is really going on. That’s why the [family] caregiver role is dominant. You need to know what is best for your family member, on his behalf.”
Caregiver provides emotional support
Four days after the diagnosis, Baba underwent surgery, a prostatectomy. Jacqueline flew back to Sydney on the day of Baba’s operation. She went straight from the airport to the hospital.
“He was on the bed in a hospital gown, and I gave my dad a hug and a kiss. ‘How are you, Baba?’” she greeted him.
Jacqueline’s visit comforted her father.
“It’s not just the ‘caretaker’ [being] there. But it’s also family. He saw his daughter who was away for a couple of months. It also helped the rest of the family to feel secure.”
Caregiver monitors patient’s recovery
Jacqueline continued to serve as a calming presence, when Baba was released home to recover. He needed regular medication reminders and continuous supervision.
Jacqueline monitored Baba’s diet and routine habits. The initial two weeks in recovery were tough. According to Jacqueline, Baba fell into a ‘very bad depression’ due to complications stemming from surgery — incontinence.
“My dad was not able to sleep well or live well because of the incontinence issue. So my role was to keep reminding him that this is a temporary problem. He just did an operation. And there are so many ways to get it treated.”
Caregiver manages the patient’s mood
Despite the initial reassurance, Baba experienced a bout of deep pessimism.
“He was losing faith in life,” said Jacqueline.
Baba would express his frustration: If I have to return to being a child after being a good man, then I can’t live like this anymore.
“With this type of depressing statements, it made the whole family depressed for him, especially my mom,” Jacqueline explained.
So the caregiver worked to create an uplifting atmosphere. She told jokes and put on light-hearted movies. She also performed housework and kept company with her mom during trips to the supermarket.
Although family caregivers provide indispensable service, they are also prone to emotional stress. According to the Family Caregiver Alliance: “In addition to more complex care, conflicting demands of jobs and family, increasing economic pressure, and the physical and emotional demands of long-term caregiving can result in major health impacts on caregivers.”
Jacqueline neglected self-care during the trip to Sydney.
“I forgot myself.”
She remained fully devoted to caring for Baba and supporting her mom.
“I did not have jet lag because I was so busy. I wasn’t feeling tired. My mind was going crazy about my family and my dad.”
After two weeks Baba got better adjusted to his new normal. He was not feeling as defeated. Mainly because Jacqueline executed a strategy to minimize the negative.
“There was a possibility that the incontinence problem would persist. You can’t tell the patient this news. You have to wait for the patient to fully recover and be in a stable emotional state,” she said.
As the caregiver with legal consent from her Baba and family, Jacqueline would negotiate with the surgeon.
“I used to talk to the surgeon beforehand and let him know not to talk about the bad stuff [in front of] my family.”
The Remote Caregiver
After Baba stabilized in his recovery, Jacqueline flew back to DC.
She remained intensely worried about her family’s expectations for Baba. Will the cancer return?
“I knew the operation, how tough it is and what kind of care it requires. And how long it takes to recover. Sometimes one month, [or] two years, 10 years. But the family didn’t know. The patient isn’t always normal after the operation.”
Jacqueline continued to call Sydney two to three times a day.
“Make the patient happy. Keep him feeling he will recover very soon,” she said.
Two years after the operation, Baba’s follow-up tests indicated he remained cancer-free.
Today, Jacqueline keeps encouraging Baba through video chats in between her visit. She suggested he reach out to friends who also survived prostate cancer and complications after surgery. Staying socially engaged has increased Baba’s overall wellbeing. He maintains a moderate exercise routine and spends time in his garden.
Prostate Cancer Patient Caught the Doctor's Error
A prostate cancer survivor said he caught a mistake during diagnosis. Ken Cavellier explained he had to react quickly.
"The problem I had was that my doctor had misread the path report. And so when I left the office, I made the decision that I needed to find a new doctor."
Cavellier spoke with SmartBridge Health at the #ZEROSummit2018 in Washington, DC. As a prostate cancer survivor, he tells others to always get a second opinion on the cancer diagnosis.
Cavellier also emphasized his luck when his next-door neighbor was a physician. The access to the medical expert was critical when researching his cancer.
"Because any time you’re told you have cancer, that’s a life changing conversation that you have. And no one wants to have it but people do every day," he said.
"And it’s a matter of how do you deal with it. And so I was trying to deal with it as professionally as I could and as quickly as I could...and to gather as much information. And honestly, it was from the internet, it was from my neighbor who is not involved in prostate cancer but just happened to be a physician. So it’s very good that you go get that second opinion."
Kalen Makes "Life and Death" Decision to Fight Lymphoma and Thyroid Cancer
Kalen, 32, battled two different cancers. Time passed quickly before he had to make a decision on his treatment plan. He examined treatment options like alternative therapy and supplemental therapy. Find out what he ultimately chose in his interview story.
Kalen was diagnosed with two separate cancers.
His initial symptoms included feeling consistently drowsy and sluggish after sleeping. So the Miami resident went for a medical exam.
In February, 2017, Kalen was diagnosed with Gray Zone Lymphoma. The rare cancer was detected after a PET scan and chest X-Ray revealed a 10 cm tumor near his heart.
Kalen underwent chemotherapy and radiation treatments. He was treated at Mount Sinai Medical Center in Miami.
“My oncologist recommended to get my thyroid checked out after radiation for lymphoma. I had a thyroid ultrasound and then a consultation, and it was very clear immediately from the ultrasound,” Kalen told SmartBridge Health.
Kalen was then diagnosed with Thyroid Papillary Carcinoma (thyroid cancer). A PET scan found some “thyroid activity” after he finished chemotherapy to treat the lymphoma.
“The doctors told me that it was likely that I had the thyroid cancer longer than the lymphoma,” he said.
The initial focus on the lymphoma may have been the reason the thyroid cancer was not detected in the beginning.
“The best treatment option was to remove the thyroid,” he said.
Kalen confirmed each treatment recommendation with a second opinion from MD Anderson Cancer Center in Houston. His family in Dallas highly regarded the reputation of the medical facility as a place for quality care. “It’s the Disney World of cancer treatment,” he said.
MD Anderson Cancer Center worked with his oncologist at Mount Sinai in Miami. The medical experts agreed on the diagnoses and treatment plans.
“A LIFE AND DEATH DECISION”
Kalen had heard of alternative therapies but chose not to follow.
“I very quickly found limited sources that I trusted,” he said.
Meanwhile, a cancer patient doesn’t have much time to decide on a treatment plan.
“You don’t really start researching cancer until you have cancer. You don’t know anything about it. So when it does happen to you— you, all of a sudden, are in a rush. You are, all of a sudden, faced with a life and death decision.”
While conducting research, Kalen did not find concrete answers.
“I obviously started to research…books on alternative medicine, alternative treatment, everything online. You read and then cross check, and then your mind is completely turned in the opposite direction,” he said.
Kalen consumed cancer information online and on social media posts like Facebook and Twitter. He also joined cancer forums on Reddit. Still, he remained unconvinced on alternative treatments.
“Maybe if I had years to devote researching to this. But I don’t have years, I have weeks. So essentially when I decided, [I thought] I can’t take [the alternative therapy] route.”
Kalen heard anecdotes about people who traveled outside the country to seek alternative treatments. But his doubts lingered.
“After a week’s worth of research— if these alternative methods work, fantastic —but I’m not willing to risk my life to find out. I decided with the help of my parents that personally for me, I am going to put my faith and trust in a medical [treatment] that I can see with my own eyes, that has proven to be effective in X amount of cases.”
CHEMOTHERAPY IS ROUGH
“It was definitely a rough year,” Kalen said of 2017.
He underwent six rounds of chemotherapy. He quickly recovered from the symptoms after the first round of treatment. But he wouldn’t bounce back as quickly after later rounds.
“By the sixth round, I was begging for mercy — it was awful.”
Kalen had a fanny pack with an IV attached from the shoulder to the chest. The chemotherapy was an infusion for 5 days straight, 24 hours a day. Then he was off the treatment for two weeks before starting another round.
Kalen said he was constantly out of energy and chronically in pain at the end of the chemotherapy treatment.
“At the end of the week of chemo, you’re completely exhausted, and you feel like you’ve been poisoned. And you pretty much have been.”
SUPPORT FROM FAMILY AND FRIENDS
Every three weeks, a family member flew to Miami to take care of him and his dog during the round of chemotherapy.
“My family was absolutely fantastic,” said Kalen. He also credits his good network of friends in Miami. They were “just as helpful and eager,” he added.
“All of my emotional needs were met.”
Kalen found supplemental therapy in the book, Anticancer: A New Way of Life, by David Servan-Shreiber, MD, Ph.D. The book examines diet, mental and physical health to boost the body’s ability to fight cancer cells.
Servan-Shreiber was a doctor who fought against his own cancer diagnosis. Kalen found the doctor’s advice to be simple yet effective.
“A book that I found really helpful, called Anticancer, was published by a doctor who found himself diagnosed with brain cancer. [It was] an autobiographical, medical approach to alternative and supplemental therapy,” he said after reading the book.
“It’s all about decreasing risk of getting cancer and what are the things to do to boost treatment. The foods that naturally fight cancer cells, what exercise and mental activity help to fight cancer cells. It was exactly what I wanted to look for.”
WANTED: MORE SUPPLEMENTAL CANCER TREATMENTS
Kalen would like to find more medical experts who pay attention to complementary medicine or holistic treatments to fight cancer.
Currently, the oncologist is only able to recognize treatments that have been proven in double-blind studies.
“If the treatment has not been proven, then the doctor cannot, in good faith, recommend it to patients,” Kalen acknowledged.
But Kalen wishes more medical experts would be open to discussing alternative therapies.
“I would love to find a doctor to bridge that gap. [Someone] who is aware of what’s there and willing to share and put out the disclaimer, ‘Try it at your own risk.’ ”
How Chiara Decided on a Clinical Trial for Stage 4 Triple-Negative Breast Cancer
By: Chiara D'Agostino
SmartBridge Health swooped in at the right time! Recently diagnosed with stage 4 triple-negative breast cancer, my oncologist gave me a list of 84 clinical trials to pick from. Distressed, I didn’t know where to start and every place I turned to for help fell short - what medical specialist could help me narrow down this search? In person, oncologists specialize only the trials conducted at the medical facility where they work – I was looking for an unbiased specialist with a bird’s eye view.
Serendipitously, SmartBridge found ME through my breast cancer blog Beauty Through the Beast and I jumped at the opportunity to receive an expert second opinion. Dr. Jeremy Force from Duke University called me that afternoon to introduce himself and learn my questions – I felt heard. Dr. Force offered to provide me a list of his top five choices of clinical trials best suited for me after reviewing my medical records and attending that week’s American Society of Clinical Oncology conference – a sigh of relief!
Simultaneously, I visited NYC specialists and signed consent for the exact type of clinical trial that Dr. Force highlighted in his comprehensive consult, cementing my decision.
What a great service to be able to share with cancer patients that reach out via my blog seeking advice but limited in resources due to geographic location, we can rest assured knowing that an expert second opinion by Smartbridge Health is just a phone call away!
Breast Cancer Warrior Talks with a Top Oncologist about Biopsy
By: Carole Sanek
How many times have you been given news that brought you to your knees and you wanted to cry out “Why me?"
Twenty-four years ago this November at 430P I received a phone call that did just that. I was in a daze because I had just heard the words “you have breast cancer,” and after that I heard nothing else.
I had to go through an entire weekend with no other information. There was no computer to search in our house. All I could do was go to the library and borrow books, but again this was not an answer because I did not have a clue what would happen to me next – I was in the dark.
Worse yet I had been an Oncology RN at a time when patients came into the hospital for hospice care and in my mind’s eye all I could see were the patients I had cared for until they passed.
Fast forward 24 years, so much has changed and is continuing to change. We have access to answers now. In many cases we know people who have walked through the pink fires of breast cancer. We see celebrities with a breast cancer diagnosis, we listen to them on the news shows, we have walked in the walks, and we have worn the pink ribbon. We thrive.
Information is available to us in so many ways. However, I and others, have found too much information can be confusing and overwhelming and our heads hurt, our brains are on overload and we still find ourselves without definitive answers.
In June of this year I found myself looking for answers again and I searched the Internet for hours. I had been told a small suspicious lesion had been detected in 3D Mammography and I needed a biopsy. This would be my 5th biopsy and each one comes with the same fears I had 24 years ago.
Several weeks later SmartBridge Health reached out to me from my blog which is about surviving and thriving in life. The timing could not have been better because I had questions, I wanted and needed answers and those answers came to me through a telephone consultation with Jeremy Force, DO of Duke University.
Dr. Force and I talked about biopsies. We discussed treatments for a second cancer in a radiated breast. We discussed mastectomy options over continuing to have biopsies over and over again. We discussed the type of cancer I had 24 years ago. I got help from Dr. Force and SmartBridge Health. I received answers. I know my path now.
Over the years I have worked with top physicians in top hospitals and I have worked in rural settings where the best answers were hundreds of miles away. I have also worked outside the US in a country where we would bus women into the capital city to receive care. I understand the importance of having choices presented to us in the form of educated second opinions.
SmartBridge Health is the bridge over the gap of your unanswered questions. I am extremely grateful to them for helping me put my confusion to rest.