Month: November 2013
Mesothelioma Warrior with Her Last Goodbye
Mesothelioma is a cruel cancer. As long as asbestos is still among the everyday items we use or pass, it will keep taking family members to the grave.
Yes, this is a harsh statement, but nevertheless it is true. Until you hear of a family member being struck down with Mesothelioma did you take notice of the warnings of asbestos? Did you listen to the broadcasts made by law firms, perhaps touting for business, but ultimately telling you this stuff is dangerous?
Many people use the statement that Mesothelioma is a rare cancer. What is rare about a disease that takes more than 3,000 people a year? What is rare is the fact that not more than one or two cases per year may appear at the same doctor’s clinic or hospital, but that doesn’t make it rare as a killer.
Because Mesothelioma has been thrown on the backburner for people who undergo the journey of trying to survive, most sufferers now turn to support networks where others understand the terrible way this cancer can act.
You can have a CT scan in June saying your disease is Inactive and Stable, two weeks later that same cancer could have reignited itself and grown over 1 cm around the lung. On the other hand you could be told you will die in less than 6 months, but this same cancer may decide to stay stable for that period of time. The only person who can really say what is happening, once the mesothelioma has come to life, is the patient. They feel the growth of this terrible disease; they understand that when their breathing is becoming laboured the mesothelioma is growing. But diagnosing time is something none of us can do.
Mesothelioma isn’t like any other cancer – it is sly and quiet as it invades the lung, abdomen, pericardium or even testicles. Unbeknownst to many it has sat quietly in their organs waiting for the day it would breathe itself and set off on a journey of destruction throughout your body.
The mesothelioma community is shocked on a daily basis because someone who was fit and well two months ago is now fighting for their lives in a hospital room. No one has a chance to work out the final goodbyes because it can and does take you so fast.
We have discussed on these insights about Near End of Life Wishes, but would we want to say Goodbye too early to our loved ones when we could just be fighting a quick chest infection and thinking the worst.
A late friend has given me a good idea, hard at explaining his own feelings he spent hours looking for the perfect cards with the right words. He left these for his devoted wife for when he died, he knew that this would be his goodbye without actually having to say those words or be prepared to do so when he was fighting for his last breath.
I would hate to think I am lying on my death bed and not saying the correct words to ease my loves heart, likewise I doubt he would forgive himself if he left me without saying I Love You. But just in case I go when he is asleep I hope he will find a nice stack of cards written with the words I was not able to express with those last breaths I took.
Friends and Family Gather to Remember Mesothelioma Patient Don Smitley
Jennifer Gelsick has been writing blogs about life for her family as her father, Don Smitley, battled mesothelioma. Sadly, Mr. Smitley passed away last month. Jennifer returns to MesotheliomaHelp with a different perspective on the impact of mesothelioma. She hopes her new perspective will help those with mesothelioma live for the day and cherish every moment of life.
As I sit down to write, I am now a completely different person writing from a different place. I have joined the part of the mesothelioma community who has lost a loved one to this terrible disease.
My amazing father, Donnie Smitley, passed away on October 15, 2013, at the age of 57. These last few weeks have been a blur for my family and for me as we attempt to adjust to this “new normal” of life without him. Don’t get me wrong, I still feel him with me, just in a different way. We are coping as best we can and appreciate the expressions of love and support that we have received more than you can imagine.
The support began immediately after I got the call from my husband telling me that Dad had stopped breathing. A friend who lives close by came to be with me until Mike got home. Another friend drove us the three hours to my parent’s house. Countless people brought food, sent cards and flowers, and visited us. The outpouring of love was overwhelming, but in a good way.
The days of the viewing were full of family members, friends, and acquaintances sharing condolences and wonderful stories of my Dad. It was amazing to me to see the huge number of people who recognized how special Dad really was. At the funeral, bluegrass music was sung, stories were shared, and an amazing message was delivered. The main point: Dad was a man of relationships. How true – his relationships with his family, friends, and most importantly, God.
Throughout the three days we spent at the funeral home and at the Church, I realized that with someone as amazing as Dad, we shouldn’t have been surprised that God needed him back so soon. We should just be grateful that He let us keep him as long as He did. Dad was truly an angel here on earth, and now has his wings in Heaven.
Know more about Mesothelioma and how you can deal with it.
Asbestos-Ridden Cigarette Filters May Put Some Smokers at Risk
Mesothelioma is a unique and rare form of cancer, typically affecting the lining of the lungs, caused by exposure to asbestos fibers. Individuals primarily sickened with the asbestos-related disease were exposed to asbestos in the workplace, or through unsafe demolition or renovation practices of pre-1970 structures where asbestos was used in many of the construction materials. Most recently, rescue workers at the scene of the 9/11 terrorist attacks are at risk of mesothelioma due to the high levels of asbestos in the toxic dust cloud.
One fact that has been constant in the research of mesothelioma causes is that unlike many other predominantly pulmonary-related cancers, cigarette smoking has no known causative affect on mesothelioma incidence. Although smoking does increase the chance of getting lung cancer which is sometimes confused with mesothelioma.
However, a caveat should be added to that fact – smokers of Kent Micronite filtered cigarettes between 1952 and 1956 may be at risk of developing the disease. According to the San Francisco Chronicle, Kent’s ads promoted the Micronite filters as “the greatest health protection in cigarette history” because the filter removed more tar and nicotine than the competitor’s filters. However, it was later disclosed the Micronite tip contained highly toxic crocidolite – “African blue” – asbestos.
A study released in 1995 by the American Association for Cancer Research (AACR) found that there was no barrier or secondary filter between the end of the filter and the smoker’s mouth. Thus, the smokers inhaled or swallowed the asbestos fibers in the filters which then became lodged in their body. Because asbestos fibers are essentially indestructible, the body’s immune system is powerless to break them down.
Crocidolite was the least used asbestos in commercial products, and was often used to make asbestos-cement products. However, the AACR says the blue asbestos is “implicated most strongly as causing mesothelioma.”
The author’s of the study concluded that the evidence strongly suggests that there is an increased risk of mesothelioma among people who smoked these cigarettes. They estimate that in just one year alone, 1954, about 550,000 packs of Kent Micronite cigarettes were sold each day. The authors further concluded that “several hundred thousand people still alive [in 1995] were exposed to substantial amounts of crocidolite from smoking this cigarette.” With a latency period of 50 years or more, more mesothelioma cases may be diagnosed among the population.
Mesothelioma Caregivers May Benefit from ‘Talking it Out’
“I had no idea that my husband would be this sick.” “No one told us that he would have to go to rehab.” “We never would have imagined that this would happen.”
Recently when listening to a patient and his family talk, it reminded me that everyone needs to tell their own story. Just as every mesothelioma diagnosis and journey is unique, so too, is everyone’s story. We all bring our own perspective and expectations with us. Whether those expectations will become reality is out of our hands.
The next time a family member, friend or co-worker asks you what can they do to help, it might help to just talk to them. Tell them your experience, tell them how you felt when the treatment plan did not go as planned, how the symptoms are progressing, or how things are going better than expected. It can give you the strength to continue.
A mesothelioma patient and his family are told beforehand what the risks and benefits of all procedures are – it is required by law. When hearing the list of risks, no one wants to think it could happen to them or to their family member. When the plan goes off course, it is doubtful that you were not told of the risks vs. benefits of the treatment plan. Rather you hoped and prayed that you or your loved one would not be whom the doctor is talking about when told of the possibilities.
When things don’t go according to plan, or according to your plan, it is a good idea to take a step back and realize the caregiver may need a lot of support. Often times it is the caregiver that needs so much. This is not a time to do this alone. Let people in and tell them how you are feeling. Possibly you are scared, overwhelmed, sleep deprived and not well nourished. This all sounds so minimal but it is so important to pay attention to the caregiver and take care of them.
Trust me if the patient is in the hospital or under the care of physician he or she is well cared for. It is important to keep things in perspective and hard to if you are not well cared for. Please allow people to help. As stated before maybe you just need someone to listen to you.
Know more about Mesothelioma and how you can deal with it.
Mesothelioma Survivor Lou Williams Fights for Her Life, For Others and For an End to Asbestos Use
In March we shared Lou Williams’ story as she struggles with both pleural and peritoneal mesothelioma. Through it all, Ms. Williams has maintained a positive attitude and has fought tirelessly to keep others from having to endure what she has gone through. In this article, we outline Ms. Williams’s advocacy efforts and her goal to end the use of asbestos in Australia and throughout the world.
Although Louise “Lou” Williams is a Mesothelioma Survivor – it has been nearly 10 years since she began her treatments – she is a mesothelioma patient advocate first. Nearly every day you can find her tweeting about another mesothelioma treatment, another company being held accountable in Australia for placing others in harm’s way, or about a new activity to ban asbestos. But many of her tweets are focused on the lives of the other mesothelioma warriors battling the cancer.
Ms. Williams’s positive, uplifting comments can also be found on her Facebook page and on the social media pages of her fellow mesothelioma warriors. Her messages encourage them to fight another day, or to call their doctor’s office and get in ASAP. Sometimes she simply sends a ♥ across cyberspace. Even as Ms. Williams endured another chemotherapy infusion, she reached out to her good friend Jan Egerton in England as she also struggles with the disease to say “Holding yr hand tonight xx,” and “cocooned luv and hugs.”
It All Started with her Father’s Mesothelioma Diagnosis
At 58 years old, Ms. Williams is more aware of the dangers of asbestos than she ever wanted to be. Ms. Williams watched her father die a painful death from mesothelioma in 1985. He was just 54-years-old and had worked in the building industry, where he was exposed to asbestos.
Appalled to learn that her father’s life was so quickly taken through no fault of his own, Ms. Williams soon began telling “anyone who would listen” that asbestos is an abhorrent mineral that leaves those exposed to it with devastating health conditions.
Then, in a tragic turn of events, Ms. Williams herself was diagnosed with the same cancer, brought on by the very same asbestos fibers that ultimately killed her father. As a child, Ms. Williams helped wash her father’s clothes, which were often covered with asbestos dust from work.
While fighting for her own life, Ms. Williams took on the asbestos industry to halt the use of asbestos and asbestos-containing materials that were ubiquitous in Australia.
“I believe spreading the word that there is no safe asbestos, and asbestos kills is helping to keep me alive,” said Ms. Williams in an e-mail to MesotheliomaHelp.
Raising Awareness of the Dangers of Asbestos
Just as Ms. Williams was shocked that being exposed to a small amount of the toxic fiber left her vulnerable to mesothelioma, many of the others she educated were also dumbstruck.
“Being a woman and living with this cancer has been an eye opener for many people,” said Ms. Williams.
In order to get the word out to the masses, Ms. Williams first had to find out everything she could about her treatment options, support options and where she, and others battling mesothelioma, could turn for help. She found that those options were limited, if not nonexistent.
Acting quickly, Ms. Williams formed a partnership with Asbestos Diseases of Victoria (ADSVIC) in January 2004, just months after she received her diagnosis. As Ms. Williams tells it, “I made contact, became their first client, and set about getting a support group happening with others.” Ms. Williams eventually became Vice President and joint awareness/advocacy coordinator on the board of ADSVIC and continued to rally support in Australia to end the use of asbestos.
Ms. Williams eventually realized that there was advocacy and awareness work to be done on a global scale, and she left ADSVIC (which is now AsbestosWise) and joined the Bernie Banton Foundation, an Australian group that provides support and information to asbestos-related disease sufferers and their families while Raising Awareness of the Dangers of Asbestos.
Fighting for Changes in Australia
Perhaps Ms. Williams’s greatest fight now is in her petition to the State of Victoria, Australia to join the National Asbestos Strategic Plan. According to an article in Invest in Australia, the aim of the plan is “to prevent exposure to asbestos fibres, in order to eliminate asbestos-related disease in Australia.” Victoria is the only state in Australia to not join the plan.
Always positive in outlook, Ms. Williams told MesotheliomaHelp, “Once this is in place then we will see in Australia quicker united action on awareness, education and removal on a prioritised scale.”
She is also fighting to see Asbestos Awareness Month recognized throughout the country. In a blog entry in early October, Ms. Williams said, “Having Asbestos Awareness Month happen is so important for me to see in my lifetime. Bring on next year and a nationally recognised Asbestos Awareness Month!”
Of course, educating the public about mesothelioma is just as critical. While the United States has a Mesothelioma Awareness Day set aside on Sept. 26 each year, Australia does not have such a day. Ms. Williams is campaigning to have Sept. 26 recognized as National Mesothelioma Day in her country. Ms. Williams said in her blog, this Awareness Day “would be terrific to see in my lifetime. This would then become a global Mesothelioma Day celebrated on Sept. 26!”
Never Going to Give Up
Ten years after her initial diagnosis, and having suffered through four surgeries, 36 rounds of chemotherapy, and countless days in the hospital, Lou Williams faces another round of chemotherapy. But she remains positive. She sees the cancer that took her father’s life and threatens hers as a means to educate the public about the dangers of asbestos — the only known cause of mesothelioma. She has turned the tragedy that has befallen her and her family into a sounding board to fight for the lives of others who may have been exposed to asbestos.
Ms. Williams has received countless awards and recognition for her dedication, focus and perseverance to ensure asbestos is banned and no one else suffers from a disease that is caused through no fault of their own. In June, the Asbestos Disease Awareness Organization (ADAO) announced that, for the first time, Ms. Williams and two other honorees will each receive the Alan Reinstein Award at the Asbestos Awareness Conference in 2014. The award is named for the husband of ADAO’s founder Linda Reinstein and recognizes individuals’ commitment to education, advocacy and support to countless patients and families around the world.
In a June article in The Examiner, Ms. Williams said she “will raise awareness for asbestos and its dangers until her last breath.”
“If I can help to save even one life,” Ms. Williams told MesotheliomaHelp, “I will be happy.”
Follow Lou’s mesothelioma battle and advocacy efforts at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”
Sources:
- Petition to the State of Victoria,
http://www.thepetitionsite.com/376/207/908/petition-the-state-of-victoria-australia-to-join-the-national-asbestos-strategic-plan - The Examiner
http://www.examiner.com.au/story/1575188/voice-for-asbestos-victims - Alan Reinstein Award
http://www.asbestosdiseaseawareness.org/archives/22455 - Invest in Australia
http://www.investinaustralia.com/news/64-million-tackle-australia%E2%80%99s-deadly-asbestos-legacy-12c3
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