Mesothelioma cancer awareness: a growing hope!

It is my pleasure to be an information platform for the cancer community.  Mike Postorino, Public Outreach, The Mesothelioma Center at Asbestos.com, contacted me asking if I might showcase mesothelioma and the growing list of survivors.

Not too far from where I live is a small community in the northwest corner of Montana.  I am aware of this deadly cancer because this community has been gravely affected by mesothelioma and other cancer-related diseases from mining.

Libby, Montana,  is the story of a town discovering and then coping with toxic vermiculite mines that supplied jobs to more than 200 residents and helped Libby prosper for decades. Libby residents have suffered with asbestos-related diseases like mesothelioma, but their story is ongoing. Victims continue to surface. And there are Libby residents who realize they, too, may be in danger. . .”

Not only are Libby residents faced with a possible diagnose with this disease, many other small communities throughout the United States have been exposed to this deadly dust.  And interestingly enough, some survivors were not in direct contact with asbestos dust but were indirectly exposed, the “take-home exposure.”

The Wall of Hope has many testimonials about those who have survived this very threatening and often terminal cancer.

Even With a Diagnosis of Mesothelioma, There Is Hope

A diagnosis of mesothelioma cancer used to come almost automatically with a grim prognosis.

Not anymore.

Things are changing slowly for this complex cancer that is caused almost exclusively from an exposure to asbestos fibers, usually affecting the thin membrane surrounding the lungs and other vital organs.

The list of survivors, and their incredible stories of hope, is growing longer now.

There still is no proven cure, but advances in earlier diagnosis, genetic therapies and vastly improved treatment options have at least given patients a fighting chance against this horrible disease.

Mesothelioma is a rare cancer – an estimated 3,000 Americans are diagnosed each year – and its symptoms often mask those of less serious illnesses, making it critical to see a physician who is experienced with the disease, and a treatment center that can provide a multifaceted approach to therapy.

Because there is such a long latency period – often 10 to 50 years between initial asbestos exposure and obvious symptoms – too often the cancer has spread extensively before it is discovered. As late as just a few years ago, the prognosis typically was 6-18 months to live.

Today there are mesothelioma survivors who have lived two, three, four and more than five years with the disease, finding ways to slow the growth. The Mesothelioma Center has a Wall of Hope that details some interesting cases.

There are people like Angela Winsor in Michigan, who is beginning her second year with the disease, helped by a clinical trial and treatment at the University of Michigan Cancer Center.

Although she was not a candidate for surgery – the disease already had spread too far – she has returned to her job as the chief operating officer for a small workforce development company. A supportive family, her work at church, and the belief in God’s plan, has allowed her to battle the cancer.

There is Bob Oberstar, retired and living in upstate Wisconsin seven years after he was diagnosed with mesothelioma. He has refused to give up many of his outdoor pleasures after undergoing aggressive surgery to remove the lining around his one lung, and he opted against the chemotherapy/radiation treatments because of the side effects he wanted to avoid. He already has fought off prostate cancer.

David Cutts, a Marine Corps veteran who served in Vietnam, is in his sixth year with mesothelioma. He, too, had an aggressive surgery that removed one of his lungs, but has allowed him to continue living the retirement lifestyle in New Jersey.

“I’ve already beaten the odds,” Cutts told the Mesothelioma Center. “It’s important that people who get this diagnosis understand that there still is hope out there if you find the right place.”

 

Bio: Tim Povtak is a senior writer at the Mesothelioma Center. He is a former award-winning journalist for a metropolitan newspaper.

Asbestos.com is an informative site for education and services regarding mesothelioma.  There are many recognized treatment centers and hospitals throughout the nation giving hope to those who once had no hope.

Cancer research moves forward at an astounding pace.  “You have cancer” used to mean “terminal”.  With today’s progressive research and treatment developments, that phrase is no longer a death warrant.  Mike and I agree, along with many other thousands effected by cancer, may funding for research and development continue giving us the hope in living a long and productive life!

I am an advocate of hope, let me tell you my story . .

Welcome to my blog. The purpose for my blog is to provide information concerning cancer and topics surrounding cancer. Since the upstart of my blog, more and more information is available online. I hope my blog might be your one stop in directing you to the information you are looking for.

I also want to bring to your attention a valuable resource on the side bar. I linked other Christian cancer blogs that are cancer specific. When I was in treatment I followed a CaringBridge journal, similar to a blog, about a woman who had lymphoma and was one year ahead of me in her treatment and recovery.

Wendy was my “in the trenches” support, she was so very valuable to me. Not only did I read her journal, she was kind enough to call me occasionally to see how I was doing. In the midst of my storm, Wendy was the ever bright, blinking lighthouse and alerted me to what was coming ahead, and what did come was more fierce than the storm I was already in.

I am in contact with a few of the blog authors. I find their stories compelling and one blog in particular, thought provoking. I am so impressed with their approach to their cancer diagnose and treatment, and for some, recurrence.

During my treatment and recovery I kept a CaringBridge journal documenting the highs and lows of my journey. The link to my journal is found on the side bar. I prefaced the journal with an “introductory” page giving the reader an overview of my CaringBridge journal.

If you are interested to read more about me and my cancer journey on my CaringBridge site, please click on the link to the right. I highlighted a few of what I consider my milestone entries by including the date and page where you can read about that account. What follows here is a copy of my introductory page.

I thank you for your readership. It is my goal for this blog to grow with more articles, information and resources. If you have any suggestions, you may send me a comment by clicking on “Your voice . . . contact me”.

The introduction to my CaringBridge Journal

Book I – From the Beginning
April 29, 2008, pg. 1 – diagnose, chemotherapy protocol, R-hyper-CVAD, followed by an autologous stem cell transplant. My stories and accounts of my treatment phase.
November 4, 2008, pg. 61 – stem cell transplant. My account of my transplant and the effects of high dose chemotherapy, BEAM; the time of engraftment and my release from the hospital and permission to go home, Montana.
  • Entries of interest
    • “A Bit of Anger”, December 7, 2008, pg. 6
    • “Going Home”, December 9, 2008, pg. 69

May 6, 2008, the first day of many.
Huntsman Cancer Hospital, Salt Lake City, Utah
May 28, 2008, my son, Chad, flies in from California to visit me!

May 2008.  The kids fly in from California, Chad; Nevada, Christy; and Montana, Carrie!

November 5, 2008.  Proving I can do it!  I face my auto stem cell transplant by a personal challenge of 1/4 mile jog!

Happy Birthday to me!  November 14, 2008, my auto stem cell transplant team.
Released from the hospital and home for Christmas!  A very special Christmas indeed!
Book II – A Distant ThunderMarch 2, 2009, pg. 78 – The accounts of my unexpected, erupting emotions I experienced after coming home. I never anticipated the lostness and confusion I felt in the psychological aftermath of cancer.

February 23, 2009 – 100 day post transplant appointment. Cancer free! Dr. Cao and Greta.

March 14, 2009.  My best four-legged friend, Madaline.

July 17, 2009.  My first Relay for Life event with my cancer support group.

One of many post treatment blood draws. My son, Chad, just happens to be a phlebotomist.

Book III – Depression

December 30, 2009, pg. 94 – PTSD. My time with my therapist, Sally, who helped me with my internal search and the healing of my pain and hurt from my unexpected journey with cancer.

  • Entries of interest
    • “Sorting It Out”, December 30, 2009, pg. 94
    • “Disguising My Pain”, January 5, 2010, pg. 94
    • “Integrating My Life Into the Balance of My Future”, February 2, 2010, pg. 95
    • “Hold On. Don’t Let Go or Give Up. Just Hold On.”, February 10, 2010, pg. 97
    • “Tapestry”, August 26, 2010, pg. 103
Snow Canyon, Utah, March 18, 2010. I met Larry, the man I mentored after his transplant.
Kirk Creek, California, March 22, 2010.  A quiet and reflective time for me . . .

Wendy and I meet! March 23, 2010

The Grand Tetons,Wyoming, August 7, 2010.  Mark and Gail Mizu and Dale and I.

“Tapestry”, August 26, 2010, pg. 103, CaringBridge journal

Book IV – Living Again

April 12, 2011, pg. 105 – Advocate of Hope. My purpose and my call, an advocate of hope.

  • “Sailing”, June 23, 2011, pg. 105
July 30, 2011.  Sailing on the NorEastern, Flathead Lake, Montana, USA
My vision and dream of sailing fulfilled.  My journey comes to an end and I find myself whole again.
Always and forever it is my hope and prayer that my journal and blog with will bless and benefit you whether you are a patient, survivor, caregiver or friend. My life verse is Romans 8:28-30, that ALL things work together for good and all to the glory of God! 

A decade after a cancer diagnosis: musings on life, by Betsy de Parry

You have cancer. Exactly 10 years ago today, I heard those frightening words. I was driving north on US 23 and might as well have been slammed by the semi that was traveling next to me.

Nine months later — after being diagnosed with an “incurable” form of non-Hodgkin lymphoma that resisted two back-to-back chemotherapy regimens — I was rescued by a new treatment that came along in the nick of time: radioimmunotherapy, developed by UM’s Dr. Mark Kaminski. I’ve been healthy since.

So much for “incurable,” although my medical records indicate that I have achieved “durable, long-term remission.” But it doesn’t really matter what my records say because a chart stamped “cured” isn’t a prerequisite for living a full, happy life.

As I reflect back on the last decade, I’ve learned, among many things, that cancer may leave our bodies but it never leaves our lives. Far from it. For survivors, the followup medical tests that forever punctuate our lives are reminders of what was and what might be again. I know. I had a CT scan just two days ago. Thankfully, it confirmed that I’ve been disease free for 9 years, 3 months and 26 days. But who’s counting?

I’ve also learned that it’s not hard for us to become cancerchondriacs. Ordinary aches and pains can play such havoc with our emotions that we secretly rejoice when a pain in our belly is simply gas.

As a friend of mine says, “When your world has crashed before your eyes, it’s hard to remember that anything could be something other than cancer.”

Another adds, “We’re scarred by our diagnosis. Every ache is a recurrence. Luckily, most of the time, reality is not as bad as our fears, but we become worry warriors.”

No matter how different our experiences, we survivors have at least one thing in common: cancer shoves mortality in our faces and shatters our naive illusion that we can always count on our bodies to cooperate. It forces us to live with uncertainty as our constant companion. And that’s easier said than done.

Every one of us would love a guarantee that cancer will never recur, but no such guarantee exists. As long as we’re alive, illness — of any kind — is a risk of life itself and death will always be a certainty. It seems to me that what I do between now and then is much more important than worrying about the inevitable.

And so I’ve learned to plan — to live — with purpose and priority alongside a couple of lessons that cancer forced me to accept: we can’t always shape our own destinies nor are we always in control of our lives, much as we’d all like to believe. Quick, concrete answers and predictable outcomes aren’t always possible, much as we all want them.

But cancer also taught me that impossible is simply a word that may or may not be relevant.

And it gave me the freedom to savor the present like never before. After all, none of us knows what’s around the next bend in life, so why not enjoy the present?

Yes, cancer taught me many lessons, including that adjusting to the experience doesn’t happen once and then it’s over. I wish it were that easy, but putting cancer into the context of our lives is an ever-changing, ongoing process because it’s one of those life-altering events that can change the way we feel, the way we think, the way we see ourselves and even the way we see the world.

I’ve accepted that cancer will always be a part of my life. But it will never define it. I refuse to be paralyzed by what-if’s or to live in anticipation of my inevitable demise. On the contrary. Although it’s impossible to forget the pain and anguish that cancer inflicted on my family, being rescued from the jaws of death leaves a lasting sense of wonder and zest for life.

It leaves a lasting sense of gratitude to the many people who helped me through the most difficult time of my life, including my husband who, during my illness, stopped his life many times to help me rescue mine and my extraordinary medical team, led by Dr. Kaminski, who, for all these 10 years, has cared not only for me but also about me.

It leaves a sense of excitement at the scientific advances that have been made in this last decade, but also a sense of frustration that unraveling the mysteries of cancer is an agonizingly slow process.

I’ve had the privilege of meeting many physician/researchers and scientists, and I’ve been awed by the persistence and passion that drive them. And I’ve been awed by many survivors and their families who have faced challenges with remarkable grace and dignity, many of whom have re-directed their own lives to help those who follow in our footsteps.

Collectively, they’ve shown me that cancer gives context to compassion, and they’ve shown me more of that than I ever dreamed possible. They’ve shown me the very best of humanity and the resilience of human beings.

I would never have cancer by choice, but having had it, I wouldn’t trade the view of the world that it gave me for anything.

Andy Dufresne got it right when he said in The Shawshank Redemption, “You can get busy living, or you can get busy dying.” I choose to stay very busy living.

Betsy de Parry is the author of Adventures In Cancer Land and the producer of Candid Cancer reports for the PBS show A Wider World which airs in this area on Tuesdays at 5:30 p.m. on WTVS. Find her on Facebook or email her.