Category: Faces of Mesothelioma
Useful Mesothelioma Terms for Families Facing Mesothelioma
When dealing with a mesothelioma diagnosis, you learn a new way of life. Everything changes, including your vocabulary. Three terms that I didn’t know anything about before mesothelioma came into my life are pleural effusion, thoracentesis, and pleurectomy.
The term “pleural effusion” came into play before Dad’s diagnosis. Pleural effusion is essentially fluid in the lung. This was Dad’s main, tangible symptom. It was part of the cause of his fatigue and shortness of breath. He was admitted into the hospital with this diagnosis on Thanksgiving Eve, 2011.
On Thanksgiving Day of 2011, we learned another new word, thoracentesis. Essentially, this is where your lung is “tapped” and fluid is drained from it. Although Dad got a little relief after this was done, the fluid kept returning and was drained again in January, during a VATS procedure (an exploratory surgery that led to his diagnosis), and February 2012 during his pleurectomy.
“Pleurectomy” is a word that was so foreign and scary, but that has become close to our hearts, as it saved Dad’s lung and his life. Dr. Harvey Pass performed this surgery on my father on February 15, 2012, at NYU Langone in New York City. To define a pleurectomy in very simple terms, it entails removing the lining of the lung, where mesothelioma usually attaches itself.
So many other terms that you hear in passing become part of your everyday life: chemotherapy, radiation, oncology and ports, just to name a few. When I say that every aspect of life changes, I mean that literally! It does become a lot to take in and can be tough to manage at some points.
Just remember, there are people there to help you 100% of the time. Pray, keep your faith strong, and take it one day (or word!) at a time.
Know more about Mesothelioma and how you can deal with it.
Offering Words of Comfort to a Friend or Family Member
Sometimes, when a family member or friend is ill, you don’t know what to say. You worry about saying the wrong thing, asking too many questions, or appearing to be less than genuine, so instead you say nothing. It’s important to think before you speak to someone about their diagnosis of malignant mesothelioma, but also to be there for your loved one and show concern and support.
Even though you may not understand mesothelioma, keep in mind that the person you’re trying to comfort may not know a lot about it either. Questions about the disease itself may not be the best thing to discuss right off the bat. Trust me, it is a lot to take in! Also, realize that malignant mesothelioma is a serious thing; be careful not to shrug it off.
It might be best not to discuss where the person thinks they were exposed to asbestos, as that is neither here nor there at this point. Talking about others who might have had mesothelioma is a good topic to shy away from as well. Medicine and mesothelioma treatments are much more advanced now than they were even 5 or 10 years ago, and the survival rate is much better.
Whatever you say, be sure that it comes from the heart. If you are going to ask how someone is doing, listen. Don’t change the subject or try to lessen what they are going through. Rejoice with them in their triumphs and share in their struggles. Offer to help with specific things, but again, be sincere and follow through. Make plans once or twice a month to do something together, and be sure to do it. Platitudes mean nothing if they are not concrete.
Some things that my Dad was told that helped him so much were, “keep the faith!”, “God doesn’t only go half way”, and other uplifting messages of hope and trust in God. Also, never underestimate the importance of silence and saying a prayer together. My family spent and still spends a great deal of time praying. God will hear them and answer them.
Your loved one might have things they want to talk about, some of which may have nothing to do with meso. Let them guide the conversation and allow them to get some things off their chest if need be. They might not feel like talking about things that day, so let them take control and talk about their interests.
Don’t be afraid or discouraged to talk with someone about their illness, mesothelioma or otherwise. The key is to be sensitive to what they are going through and to be earnest and heartfelt in your conversations. They and their family will appreciate your presence and prayers!
Mesothelioma Survivor and Family on the Lookout for a Breakthrough
Lately, it seems like there has been a buzz regarding possible new treatments for mesothelioma. This brings me even more faith that a cure is just on the horizon! Keeping up with the newest treatments, however, is confusing and difficult at times. Understanding the medical terminology and even the basics can be daunting and scary, but it is a gateway to hope and a cure.
Researchers have spent a great deal of time working towards the goal of curing mesothelioma permanently, and I believe that a breakthrough is on the horizon. Some of the treatments and procedures that my Dad was blessed enough to go through were fairly new or still in the clinical trial stage. Many of these recent developments have helped so many mesothelioma patients.
For a newly diagnosed patient, these treatments could literally be their lifeline. In the future, mesothelioma may not be as scary as it is today! Of course, no one wants to hear this diagnosis, but there will hopefully be a time soon when it can be said, “We can get rid of this permanently, no problem!”
We would not be where we are in the fight against mesothelioma if new, revolutionary procedures and techniques had not been conceived and brought to fruition. These treatments are not necessarily only for the newly diagnosed, they are also for survivors. These could be things to help prevent a recurrence, and to treat a recurrence if it were to occur. There may be something out there that could guarantee there would never be a recurrence, or add to the survivors quality of life. We have to be diligent to make these dreams a reality.
My Dad has been a part of new treatments, and they have been a Godsend. With prayer, trust in God, and faith, a cure will come! Countless people are awaiting the day when the announcement comes that a cure has been found. My family and I are among them, waiting to celebrate!
Mesothelioma Survivor Lives in the Moment
Through an email interview last week Louise “Lou” Williams, of Mt. Macedon, Australia, a wife, mother, grandmother and mesothelioma survivor, shared information about her struggles with mesothelioma, her thoughts on the disease and her advocacy efforts for the international mesothelioma community.
Louise Williams saw the devastating effects of mesothelioma when she watched her father die from the disease in 1985. In eight short months, Lou’s father, Norman, went from an active, healthy 54-year-old to a deceased victim of the asbestos cancer. Unfortunately, less than 20 years later, Lou was faced with the same overwhelming prospect when she was diagnosed with peritoneal mesothelioma at the age of 47.
Like many mesothelioma patients though, Lou’s diagnosis didn’t come until years after she began experiencing unexplained symptoms, including chronic fatigue, excruciating pain and a raised hardness in the groin area. When one doctor told her to come back in two years for a second test after finding an abnormal cell, Lou admits that “alarm bells should have gone off in my mind; however I had every faith in the medical profession.”
Nearly 18 months after that, another doctor broke the news to her that she had peritoneal mesothelioma and that she had just months to live. By then, Lou knew she had a cancer, but she was not prepared for it to be mesothelioma. They were looking for ovarian cancer.
“I knew too much about asbestos cancer, how aggressive and painful it was,” she said.
But Lou was not going to take her grim prognosis without a fierce fight. With full support of her husband and children, Lou endured major surgery to remove her tumors, followed by 18 sessions of chemotherapy (cisplatin and gemzar). The strategy paid off. Lou enjoyed five years of “reasonably good health” and lived her life on her terms.
Then in 2009, Lou received a second blow – she had developed pleural mesothelioma. Lou now has the distinction of having a very rare and unusual case of mesothelioma as her peritoneal mesothelioma is totally separate from her pleural “outbreak/strain” of mesothelioma.
Once again, Lou and her family faced an aggressive course of therapy to battle her mesothelioma. Through care from “her very brilliant oncologist (Allan Zimet) and cardiothoracic surgeon (Julian Gooi),” Lou endured three major operations, a three week stay in the hospital, and 16 sessions of alimta/cisplatin chemotherapy involving overnight stays in the hospital.
Now, it is nearly four years since completion of her last round of chemotherapy and Lou has barely missed a beat in enjoying her life with her family. Lou is “a mother to six children (2 beautiful daughters) and (4 great stepkids) and proud Nana/Nan Nan/Nanalou to four beautiful little grandchildren, seven step grandchildren and two step great-grandchildren.” She visits them every chance she gets and just returned from an extended trip into Melbourne where she was able to enjoy “special Nana time.” In addition to traveling extensively throughout Australia and Europe, Lou has traveled to the United States to Santa Monica, Los Angeles, Disneyland and San Francisco, to Chicago, up the Michigan coast, and to Niagara Falls.
When asked what her quality of life is, Lou responded with a resounding, “Excellent!” She added, “I live in the moment and let the universe take care of the big picture.”
Although Lou has endured countless surgeries and rounds of chemotherapy, it hasn’t crushed her spirit. If anything, Lou’s energy is buoyed by her passion to prevent others from having to suffer the same consequences of asbestos as she and her father. Lou is one of the best known mesothelioma advocates in Australia, and perhaps the world.
Lou will travel to Washington, D.C. later this month as a mesothelioma advocate and take part in the 9th Annual Asbestos Disease Awareness Organization’s International Asbestos Awareness Conference.
Lou has just recently started her own blog. Follow her musings and insight at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”
Stay tuned for Part II of Lou’s story as she discusses her advocacy and her hope for an international asbestos ban.
Keep Yourself and Your Paperwork Organized During Mesothelioma Treatments
A diagnosis of mesothelioma brings an overwhelming feeling to every aspect of life… including being bombarded with information, paperwork, and bills. Here are some ways that my parents stayed organized throughout the process that may also help you out.
Small things can make a big difference. One of the first things we did was start writing things down. A notebook can be an invaluable resource to you. Write down everything you can: phone numbers, doctor appointments, information about financial, emotional, and spiritual resources, and anything you think is important. It’s better to have too much information than not enough. If you’re traveling, document hotel information, places to eat, addresses, etc. Keeping all this material in one place can help so much. Don’t worry about keeping it neat and organized. As long as you know what’s in there, you can find it in a pinch.
Make copies of EVERYTHING! When you pay a medical bill, get an appointment card, or receive a report… copy it. Many computer printers are fairly inexpensive and come with a built in copier. It is a worthwhile investment to make when you consider how much easier it will be to have multiples of various types of paperwork.
Try to keep all of your correspondence together as much as you can. Mom and Dad bought a nice size wicker basket that has become the home to everything mesothelioma related. Knowing that all your information is together is a great deal of comfort… as long as you remember to put things in there.
When you are going to an appointment, take as much with you as you can. When Mom and Dad go, they remove the information from the basket I mentioned, and put it in a tote bag that has traveled with them over this past year. It has come in handy so often to be able to immediately hand someone the information they are requesting that could take days to get otherwise. (Again, those copies come in handy!)
It’s easy for things to get lost in the shuffle when so much is happening in your life and the lives of your entire family. It’s not uncommon to forget doctors’ appointments even though the appointment cards are all on the refrigerator (another great tip), and that’s ok. It has happened to my parents, and will most likely happen to you, too. People are very understanding and are there to help you, so don’t beat yourself up if you forget.
Hopefully, these little tips will help you out, or give you some ideas on how to stay organized throughout this journey. If you lose something, don’t panic! Just say a little prayer (Saint Anthony always helps me out), relax, and charge ahead. Best of luck to all of you!
Free Mesothelioma Patient & Treatment Guide
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It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
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