Category: Family

Family Members Want to Care for Their Loved Ones with Mesothelioma

• Joseph Belluck
• Caregiver Stories

For many different reasons, sometimes it’s hard to ask for help.  You don’t know who to ask, you don’t want to impose, you’re embarrassed, or you don’t want to admit that you need the assistance.  These can ring true for anyone, but I’ve found it to be quite prevalent in the mesothelioma community.

This group is made up of warriors!  It’s a group of strong, resilient, and let’s face it… sometimes stubborn (and that’s not a bad thing!) people who are steadfast in their fight.  They don’t want to make others feel as though they are putting them out, or be what they think is a burden on their loved ones.  I am here to tell you, that no caregiver feels that way.

We are caregivers because we care and want to give anything we can to those we love.  We are honored to support you in any way that you need.  I know that there were times where my father hated asking me for things; I’m an adult, I lived three hours away, and I had “my own life.”  Just because I am married with a business and a family doesn’t mean that he wasn’t still very much a part of that life.  Things were added, but in no way was he subtracted.

I was so blessed to be there for my Dad during his surgery and recovery.  I was able to be there to help during the clinical trial and visit multiple times during his radiation therapy when he was in NYC for weeks.  I am blessed to have a life that allowed me to travel to be with my parents and make frequent trips back to my hometown.  Dad also visited me at my home, and my husband and I loved doting on him, making him the king of the castle!

So, as Dad would say, “the moral of the story” is to never be afraid to ask your loved ones for help.  Don’t push them away when all they want is to be pulled closer.  You are loved by many, and those people are just waiting for a chance to help.  God bless all caregivers and the ones they care for… in any capacity!

When Caregiving Interrupts Your Life, Get Back to the Basics

• Lisa Hyde-Barrett
• Caregiver Stories

MesotheliomaHelp is pleased to have author C. Hope Clark as a guest blog writer. Recently, both of Hope’s parents were diagnosed with Alzheimer’s, bringing her daily routine to a screeching halt. Much like mesothelioma caregivers, Hope found that she had to take care of her needs in order to better care for her parents.

By C. Hope Clark, Guest Author

I’m a novelist, with eight mysteries to my credit. Also, through my educational newsletter at FundsforWriters.com, I’ve motivated writers for 19 years. We’re award-winning, delivering a message each and every Friday for all those 19 years. A nothing-can-get-in-our-way sort of thing.

With a goal to remain positive, I lead a mission to show that anyone with drive, diligence, and a strong degree of hard-headedness can navigate the writing profession. I practiced what I preached through crazy deadlines, relocations, birthdays, weddings, holidays, and more. I preached that a dedicated writer wrote through anything.

Until we had two hurricanes and both my parents were diagnosed with Alzheimer’s within six months of each other.

In their right minds, my parents had designated me as fiduciary and medical power of attorney. Suddenly, tag, I was it . . . the go-to person for everything from where to find a restaurant to how to fire yet another doctor.

I received as many as twenty calls in a day from parents who were angry, saw dead people, and forgot where they lived, usually cursing me for not taking care of issues that didn’t exist. Doctors leaned on me to put them into a home. Family was split on how to do this, and some doctors disagreed with each other. Adrenaline and nightmares often woke me at night as everyone told me what to do but nobody could help me get it done.

Through tears, headaches, and lack of sleep, I kept telling myself to write. After all, I had deadlines. Suddenly my bottomless well found a rock-hard bottom, and not only did I struggle to write, but I wondered if I ever wanted to write again.

Practicing what I preached became more than rhetoric. Especially when my own health took a nose-dive. I felt so naïve.

Expert Insight

 The key is not to lose myself in the reality of life ~C. Hope Clark

In the midst of all the chaos of family, moving, doctors, power going out, and being the strong shoulder for parents frantic they were no longer in charge, I looked back at what I taught my readers. . . to see if I’d been spot on or theoretical in my teachings.

And this is what I learned about dealing with a complicated, stressful life:

• It’s okay to write anywhere, anytime, and any way. Forget the perfect study with the proper music background and the keyboard with the just-so touch. The goal is to put words to paper. Fix it later. I wrote 2,500 words while my father received his two-hour neurological test that diagnosed him with Alzheimer’s.
• Compromise is in order. I had a December deadline for the novel, but had given myself an earlier July goal which I’d been keeping nicely with a 500 word-a-day mission. Then all hell broke loose. Seven-thousand-miles-in-two-months-on-my-car kind of hell. I reprogrammed the deadline to October. Regretful, but I was determined to keep on keeping on. The manuscript went in December 20.
• It’s okay to tell people you have limitations. Normally highly active on social media, I didn’t want to just disappear and lose my fan base, so I let people know in my newsletters that I had my hands full, and why.
• On that note, it’s fine to be human. I explained the situation to my publisher. I told family that any day I wasn’t with them, I had to be at the keyboard. I kept one major appearance and cancelled others. Family and writing only. I boiled life down to those two basic needs.

While I’m not home free, the days I have to write are slowly increasing. I still keep a tight restraint on the commitments I accept, for fear I’ll encroach on the two basic responsibilities I have. However, this too shall pass. Right now, I’m excited to see myself coming out on the other side, and thanks to the forced down time, I’m thrilled and excited about 2018. The opportunity to make new, more extensive goals has me practically giddy.

And Newberry Sin, my eighth novel, comes out April 2018. One would never know that those words happened in doctor’s offices, in moving cars, and my parents’ living room at wee hours of the morning. Yes, I’m human, but I’m determined to instill that vulnerable humanity, and the strength that grew from it, into how I manage my new normal . . . and the next books.

About C. Hope Clark
chopeclark.com

C. Hope Clark’s newest release is Newberry Sin, set in an idyllic small Southern town where blackmail and sex are hush-hush until they become murder. The fourth in the Carolina Slade Mysteries. Hope speaks at conferences, libraries, and book clubs across the country, is a regular podcaster for Writer’s Digest, and adores connecting with others. She is also founder of FundsforWriters.com, an award-winning site and newsletter service for writers.  She lives on the banks of Lake Murray in central South Carolina with her federal agent husband.

Newberry Sin

Beneath an idyllic veneer of Southern country charm, the town of Newberry hides secrets that may have led to murder.

When a local landowner’s body, with pants down, is found near Tarleton’s Tea Table Rock—a notorious rendezvous spot, federal investigator Carolina Slade senses a chance to get back into the field again. Just as she discovers what might be a nasty pattern of fraud and blackmail, her petty boss reassigns her fledgling case to her close friend and least qualified person in their office.

Forced to coach an investigation from the sidelines, Slade struggles with the twin demons of professional jealousy and unplanned pregnancy. Something is rotten in Newberry. Her personal life is spiraling out of control. She can’t protect her co-worker. And Wayne Largo complicates everything when the feds step in after it becomes clear that Slade is right.

One wrong move, and Slade may lose everything. Yet it’s practically out of her hands . . . unless she finds a way to take this case back without getting killed.

What Would Dad Think of the Mesothelioma Ups and Downs?

• Joseph Belluck
• Faces of Mesothelioma

In the years that have passed since I lost my father to mesothelioma, I have often looked at events, not only in my life and immediate community, but also globally, and wondered, what would Dad think about this?  Sometimes, they are lighthearted happenings, others, more sober topics; Dad was interested in most things and I loved hearing his opinions and simple wisdom applied to anything and everything.

If Dad were to look at the advocacy that his family continues with the mesothelioma community, I think he would be proud. His smile beaming, eyes sparkling, as they did any time someone did something that he thought was admirable and good. He was an advocate with us before he lost his fight, and I know that he was excited to continue on with his work; now it continues through those who love him.

If my father saw the success that some friends are having with their mesothelioma treatments, he would be ecstatic, praising God and congratulating them on their progress. To see the other side, however, the number of those who have since passed, his heart would be broken and he would  be working to console their families.

Seeing the recent revelations about asbestos being used in children’s make up, I know that he would have been so sad. Dad loved children and the thought of a child being exposed to something so life-shattering would cause his heart great pain and sorrow. I’m sure that he would have had some strong feelings of how this should be handled.

I think about Dad every second of every day. Still, four years later, I find myself picking up the phone to call and tell him about something going on that I know would interest him. Even though he can’t pick up, I do take time to think about what his reaction would have been. This is a practice that keeps his memory alive in my heart, and I know that he smiles knowing that I’m still thinking about the wisdom he imparted on me and my family.

After Losing Father to Mesothelioma, Mother Finds It “Unspeakable” That Asbestos Is Found In Children’s Makeup

• Joseph Belluck
• Faces of Mesothelioma, Uncategorized

As a mother, I worry. I worry about my daughter’s first day of school; will she be nervous? I wonder what the world will be like for her as she grows and moves into adulthood. I wonder what she will decide to be when she grows up, who will she grow up to be? Something that I never considered worrying about until my father got sick was the danger of asbestos.

Sure, we know that asbestos is found in building products and things of that nature, but it being used in children’s crayons and makeup? It is completely unspeakable and inexcusable. Why would a company knowingly place our youth in danger, all for the sake of making a dollar?

Yes, I know that the products have been removed from the shelves, but who is to say that there aren’t more items like these still out there, let alone the damage that may have already been done? Thinking about what these children may end up going through because they colored a picture or played dress up makes me angry and sick to my stomach.

It’s time that we all stand up to the companies endangering society at large, especially those targeting our children. It is not okay to ignore the deadly implications of asbestos, enabling more and more of us to be put, unknowingly, at risk.

Take the time to look at ingredients of items you may use every day. If it’s questionable, put it back, call the company and demand answers. You owe it to yourself and to future generations to stop this cycle and help to eradicate the use of asbestos, and, in turn, mesothelioma.

Chemical in Alaskan Sea Sponge May Kill Mesothelioma Cancer Cells

• Nancy Meredith
• Asbestos Exposure, Family, Featured News

Another sea-dwelling plant is making headlines in oncology research. Over a year ago MesotheliomaHelp reported that the active agent, trabectedin, found in the Caribbean sea cucumber showed promise in fighting mesothelioma. Now, researchers believe the unique chemical composition in the deep-water Alaska green sponge could kill cancer cells. This discovery could lead to treatments for pancreatic cancer, and other aggressive cancers such as mesothelioma.

Found by National Oceanic and Atmospheric Administration (NOAA) scientist Bob Stone in 2005 during a fishery mission, the sponge has researchers from around the U.S., and the globe, clamoring to find out more about it, according to a July article in NOAA Fisheries. A researcher from the Medical University of South Carolina, who has been turning to marine life as a potential drug ingredient for nearly 20 years, is particularly excited by the discovery and is now working with Stone, a team in New Zealand, and with other cancer centers in the U.S.

Identifying the sponge as Latrunculia austini, Mark Hamann, the Charles and Carol Cooper SmartState Endowed Chair at MUSC, said that the plant, “covers unique and unprecedented chemical space.”

Samples of the sponge are now in the hands of researchers at the Henry Ford Cancer Institute where a team is testing sponge extracts against pancreatic cancer cells. The researchers found the green sponge extracts effective in killing pancreatic cancer cells in the lab.

“You’d never look at this sponge and think this is a miracle sponge, but it could be,” said Stone.

Although pancreatic cancer and mesothelioma are very different cancers, the two diseases both lack treatments that can effectively combat the tumors. Chemotherapy is a standard treatment option for both mesothelioma and pancreatic cancer, but eventually the cancer cells build up a resistance to the treatment. Survival is low for both cancers.

The cancer-fighting capability of the sponge is driven by its inability to flee from predators. As a result, it builds up powerful chemicals to ward off its enemies. For that reason, Hamann and the other researchers turn to these marine creatures to develop life-saving drugs. They note that “Of the eight most frequently prescribed products to treat cancer, half are natural products.”

The sponge is at a depth that makes it difficult to harvest bringing a significant obstacle to the research, albeit one worth trying to overcome. “For pancreatic cancer this is absolutely the best lead that we have,” Hamann said.

Mesothelioma, caused by asbestos exposure, is diagnosed in close to 3,000 Americans each year. Currently, there is no cure for the disease, but research into treatments of other cancers is followed closely by the mesothelioma community in hopes the results are transferrable.

“Given the lack of current effective drug treatments available for pancreatic cancer, this study finding offers hope for the future of cancer care,” said Fred Valeriote, senior researcher with the Henry Ford Cancer Institute.

This research is in early stages and significant, additional research is still needed.

Photo Credit: NOAA Fisheries