Photo by Aaron Suggs

When Your Parent Has Pleural Mesothelioma

By Daniel King | Pleural Mesothelioma Center 

Caring for a parent with cancer is a life-changing ordeal even in the best of circumstances, but mesothelioma in particular presents a greater challenge because of its rarity and severity.

The good news: There are resources that can help. You and your family do not have to endure this alone.

Facts About Mesothelioma

Pleural mesothelioma, which affects the lining of the lungs, accounts for three quarters of all mesothelioma cases.

The cancer usually develops after long-term exposure to asbestos at the workplace. Asbestos, a naturally occurring mineral, was once a ubiquitous construction material. When tiny fibers of asbestos are inhaled, they get stuck in the lining of the lungs, called the pleura.

After 10 to 50 years, these fibers cause genetic changes in healthy cells and may lead to cancer.

With pleural mesothelioma, the first symptoms are often shortness of breath, chest pain, a chronic cough, and weight loss. As the cancer progresses, your parent may experience greater pain, difficulty breathing, fatigue, and many other symptoms, and he or she may have to increasingly rely on family and other caregivers to assist with tasks of daily living.

Prognosis, or the forecast of a disease’s likely effects and outcomes, is grim for mesothelioma. On average, 38 percent of patients live about one to two years after diagnosis, and about 10 percent live longer than three years.

Keep in mind, though, there are many factors affecting your parent’s individual prognosis.

How to Help Your Parent

Some of the facts of mesothelioma are beyond anyone’s control, but there are other factors that can help your parent improve, such as eating a nutritious diet, getting plenty of rest, and reducing stress however you can.

Various medical treatments can extend your parent’s life span and improve his or her quality of life, from standard treatments such as surgery, chemotherapy, and radiation to emerging technologies, including immunotherapy, gene therapy, and photodynamic therapy.

Trying to improve your parent’s lifestyle as your family navigates an unknown world of medical decisions may leave you feeling just as overwhelmed as your parent.

After all, you still have to take care of yourself, which may in itself be a new pressure for you as a teen. For that reason, finding whatever assistance is available to your family is one of the greatest contributions you can make to your parent’s care.

Confide in Patient Advocates

Patient advocates are professionals who help patients and their families find medical and financial resources. Because pleural mesothelioma is such a rare cancer, it is vital that your parent be treated by experienced specialists. Patient advocates can help your family locate the best doctors and treatment centers for your parent’s needs.

If your parent can prove that his or her employer was responsible for asbestos exposure linked to the cancer, patient advocates can help your family obtain financial assistance and compensation through government programs, lawsuits, and special trust funds for people suffering from the effects of asbestos.

Patient advocates can also locate community organizations that provide patient resources for mesothelioma that will help shoulder the burden of caregiving, as well as groups and networks that can provide you with emotional support.

Remember that during this difficult time, it is never wrong to ask for help with any issue — no matter how large or small.

Daniel King is a content writer for Pleural Mesothelioma Center and PleuralMesothelioma.com, an informational source for mesothelioma patients and families.

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In the Shadows: Teens Doubling as Caregivers

Are you a teenager? Were you once a teenager? Are you the parent of a teenager? The answer to at least one of those questions is yes, so we know that you know how stressful that age can be. Between tackling loads of homework, making friends (and dealing with inevitable social conflicts), and trying to figure out what you’re going to do when you turn 18, the stressful woes of teens are well-warranted.

So imagine dealing with all that but also having a parent to take care of. This is the reality for more than 1.3 million teens in the U.S. These million-plus teens come home everyday and spend on average two hours providing care to a sick, disabled, or substance-abusing parent, according to recent findings by the American Association of Caregiving Youth (AACY). Come Saturday, they’re spending on average about four hours each day of their weekend providing care.

What do the ins and outs of this caregiving role entail? These adolescent and teenaged caregivers are helping their parents eat, dress, bathe, get from point A to point B, take medicines, shop for groceries and more.

The average age of the teenaged caregiver is just 12 years old–an incredibly young individual to be taking on such enormous responsibility.

In our research for the book, we encountered many teens who’d slipped into the shoes of caregiver when their parent fell ill with cancer. Many of these young caregivers were in single parent homes, and also ended up taking care of their younger siblings as well. While some were happy to step into the role, others described it as a burden. Indeed, AACY’s recent study found that caregiving youth are at a higher risk of failing in school and falling ill due to the “chronic physical and emotional stress,” as Julia Belkowitz puts it.

If you’re a caregiving youth who needs help, check out the Resources section of our website to reach out for help, and please share your experience in the comments. If you’re a parent with cancer who’s son or daughter has stepped into a caregiving role, please be conscious of how much you’re asking from your child. It’s common for parents to underestimate the time and stress that this role can cause on their children.

Why Support Groups Work … Especially for Teens

A recent article in The Huffington Post about compassion got me thinking about why support groups are so important for teens facing adversity. And, for the purview of this blog in particular, why support groups work so well for teens whose parents have cancer.

In a small study, researchers found that we feel compassion more intensely when we share common ground with that person. “… if our minds draw an association between a victim and ourselves–even a relatively trivial one–the compassion we feel for his or her suffering is amplified greatly,” wrote researcher and Northeastern University psychology professor David DeStefano, Ph.D., in “The New York Times.”

It follows that compassion comes more naturally when a person can relate to what the victim is feeling from personal experience. He or she has been there.

By the time you’re an adult, a number of life experiences have likely accrued under your belt–unless you’ve been inordinately lucky! You’ve lost loved ones and friends. You’ve probably been very ill, maybe broken some bones. You’ve experienced heartbreak and hardship alike. So wouldn’t it follow that the older you get, and the more life experiences you’ve had, the easier it is for you to relate to and feel compassion for others?

If there’s any credence to my theory, then that leaves the teenager trying to feel or elicit compassion in a tough spot. They probably lack the life experiences that come with age.

If you’re 15 years old and your friend tells you their mom has breast cancer, it’s unlikely that you have had a similar experience that allows you to really understand what your friend is feeling. And if you’re the teen whose mom has cancer, you kind of know that your friend has no idea, and maybe feel like they can’t relate to you like you need them to. Everything they say will, in the word of pre-Young Adult author J.D. Salinger, seem phony.

That’s why it’s so important for teens to find other teens who can relate because they actually have a parent who has cancer, too. I have witnessed the deep relief and giddiness that comes when a teen finds another teen like them at Camp Kesem, a network of camps across the country where every camper has a parent with cancer. Finally, these teens no longer feel as though they’re surrounded by misunderstanding. What a relief!

It’s for these reasons that it’s so important for teens facing a parent’s cancer to find support groups to plug into–or, with the help of their parents, to try and create them if none exist. Online communities and forums provide another option in the absence of these groups, too.

I wish I would have sought out a support group when my mom had breast cancer so that when I shared my thoughts and fears and ended my sentences with “you know?”, my confidants could have nodded and truly meant it.

 

 

A Bride with Brain Cancer

I just came across this Huffington Post article about a couple who recently got married in the midst of the bride’s brain cancer. Mari Mckinstry was diagnosed with brain cancer several years ago, and just a couple of weeks before the wedding had to have another surgery that left her unable to walk.

I’m sure it was with incredible determination that she conditioned her body to walk again in time to make it down the aisle on her own two feet to wed Nathan Lazur.

When you hear often about husbands leaving their wives when they receive a diagnosis of a serious disease like cancer, it’s incredibly reassuring to hear about couples like this. Hopefully, learning about strong and supportive couples like this can reassure teens that relationships can survive cancer, and also demonstrate the importance of having support–be it from family, friends and/or a romantic partner.

 

 

Blog Post Number One

Hi folks!

Well, over a year ago when we first published our book and made a website, we were gung-ho about creating a blog where we could share thoughts, info and stories relating to the topic of teens whose parents have cancer–and cancer in general.

Many moons later, here is blog post number one on our brand new site. We can’t wait to use this forum to share these reflections, exhibit guest bloggers and connect with readers.

Read on!