Guest Post: Heather Von St. James, Mesothelioma.

In December 2012 I hosted a guest post for Cameron Von St. James about his wife, Heather, and their experience following Heather’s diagnosis of mesothelioma.  This form of cancer is caused by asbestos, has a low treatment success rate and often leads to death within a matter of months.  Heather was diagnosed shortly after giving birth to her only daughter, she was just 36 years old at the time.

Cameron recently contacted me to ask if I’d share a video Heather has put together to continue raising awareness of mesothelioma which offers a means to help others know what to do when faced with this diagnosis.  You can find Heather’s very moving story in the video here:

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At the end of this short film you’ll also find a compilation of other videos. Heather’s video titled “The value of my life in Dollars and Tears” is also worth watching. It explains honestly and openly the true cost of facing cancer, the losses that result from this disease not only for the patient but for those around them. It highlights in dollars and tears the array of life changes that are irreversible and enduring.

Heather’s story is, at its core,  one of hope and she very eloquently sheds light on two subjects that continue to be misunderstood – mesothelioma and the true cost of cancer.

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Guest Post: Susan Vento – Asbestos Cancer Victims Rights Campaign

Susan recently approached me about writing a guest post regarding the FACT Act and the Asbestos Cancer Victims Rights Campaign.  I am happy to help support Susan in raising awareness of these important issues following the untimely death of her husband Bruce from mesothelioma.  Please take a few minutes to read her story and join the campaign.

My name is Susan Vento, and I am writing to you about a cause that is very close to my heart. On October 10th 2000 my husband, Bruce Vento, passed away. He was serving as a congressman for the state of Minnesota when he was diagnosed with pleural mesothelioma, a very rare cancer that is caused by asbestos exposure and kills 90-95% of its victims. Please read my post below to learn more about my personal story.

I Support Victims’ Rights: My Family’s Fight Against Cancer & Unfair Legislation

It was on a Saturday––January 29th, 2000 to be exact––that mesothelioma entered our lives. “Asbestos,” they told us, the name of the killer that would eventually take my husband’s life nine months later.

Like any story, I would like to start at the beginning because only then can you understand the meaning of the ending. My husband, Bruce, grew up on St. Paul’s East Side, the second of eight children in a second generation Italian-German family. He attended the University of Wisconsin-River Falls, working construction to put himself through college. He then went on to teach junior-high science in the Minneapolis Public School system and later was elected to the Minnesota House of Representatives in 1970, representing East Side St. Paul families. In 1976, he was elected to the U.S. House of Representatives from Minnesota’s Fourth Congressional District, where he served his constituents in the Fourth District up until his death, just barely 60.

He and I first met while Bruce was lobbying in Washington D.C. in 1980. Four years later, I started doing volunteer work in support of his re-election campaigns. Like Bruce, I was an educator, and I believed in his impact. He supported working men and women, our public schools, and those who are poor and homeless, those who do not typically have a voice in the political process. Little did I know that our love story would start in those campaign rooms, working together for a future we both believed in.

Our first date wasn’t until mid-April of 1995, where he took me out to a comedy club. I was 40 at the time, and hadn’t been dating much because I was more focused on work than anything personal in my life. It sparked the start of my life’s great love, one that I thought would last a lifetime.

In early January of 2000, Bruce left on a Congressional trip to Europe. Each night he called to check in, he kept talking about a shortness of breath and lower back pain. The morning after he returned to Washington, D.C., he went to the House physician, who immediately had him go to the hospital nearby.  They drew a significant amount of fluid from Bruce’s lung for testing.  The following afternoon, he received the call: he had lung cancer. I met him at the airport here in the Twin Cities that night, and we spent the weekend having the conversations you have when you’ve received news like this.  Bruce and I had his sons and their spouses over to share the news with them, and then we went to tell his parents––a most difficult conversation.

The following week, we went to the Mayo Clinic in Rochester, MN. After testing, Bruce’s doctor shared with us that he had mesothelioma. It was caused by asbestos exposure, which happened during Bruce’s construction work back in college. We had never heard of this disease let alone knew how to spell it. While the doctors took Bruce for additional tests, I spent a couple of hours in the hospital library, desperately searching for any kind of information I could find on this vicious cancer. Little was available at the time, so I came up with less information than I had hoped.

It was on Valentines Day that the surgeons removed Bruce’s lung, half of his diaphragm, and lymph nodes. When the toxicology reports came back, we found out that the cancer had spread to his lymph nodes. In April, he began several rounds of chemotherapy, followed by five weeks of radiation. All the while, Bruce continued serving his people from Washington. He never stopped fighting for that cause, that same vision that brought us together.

Since Bruce’s death, I have been a part of several efforts both in Washington as well as here in Minnesota to advocate for patients and their families. Too often, the corporate interests hold court and control the outcomes on much of the legislation being enacted, especially when it comes to issues like asbestos and mesothelioma. The opportunity to share Bruce’s story has been both healing and empowering. So many only know the word “mesothelioma” from the late-night cable advertisements and have not yet experienced it in their own lives.

I’ve met so many patients and families and have learned so much from their experiences. The “small world” connections have been stunning––Bruce’s nurse during his radiation was diagnosed with mesothelioma after his death and later died. My former teaching partner’s father died of mesothelioma, as did a former staff member from my elementary school.  The candidate who challenged Bruce in his last three, successful re-election bids for the U.S. House was diagnosed following Bruce’s death and died a few months after.

I’m doing this to honor Bruce’s legacy as well as to do what I can to help other patients and families protect their legal and constitutional rights. The Asbestos Cancer Victims’ Rights Campaign (ACVRC) is committed to providing a voice for patients and their families as Congress debates and makes decisions regarding legislation that would seriously erode our rights. While awareness and information surrounding mesothelioma has improved in the last thirteen years, we need to continue raising our voices. Starting with signing our petition, I encourage you to join our effort in whatever way you can.  With your help, we can take a stand. Together, we can work towards building a better tomorrow and truly make a lasting difference.

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There is something YOU can do to help. Recently, asbestos companies have been using their political influence to introduce a new bill. It is called the “Furthering Asbestos Claim Transparency Act” (FACT Act), and it will delay, and in some cases, deny justice and badly needed compensation to people suffering from asbestos-related diseases. I am a spokesperson for the Asbestos Cancer Victims’ Rights Campaign (www.cancervictimsrights.org). The ACVRC is a national campaign dedicated to protecting the rights of cancer victims and their families.  I hope that you will join our fight to defeat this unfair legislation. Here are a couple of simple steps you can take to make a difference:

1.    Sign the petition to stop legislation that threatens cancer victims!

Go to www.CancerVictimsRights.org/take-action/sign-the-petition/ and follow the instructions to sign the petition at the bottom of the page.

2.    Spread the word!

Share your thoughts on our cause and the protection of cancer victims’ rights with your blog audience. Place a link to our petition on your blog to allow your readers to sign and showcase their public support – every signature matters!
Thank you so much! Together we can truly make a difference!

 

Guest Post by Cameron: Making it Through the Holidays with Cancer

 

The holiday is a time to celebrate with family and friends and express thanks for the blessings received throughout the year. In August of 2005, we were looking forward to celebrating our first Christmas holiday as parents. We were making plans about which traditions we would continue with our daughter, but our holiday tradition plans were put on hold when my wife, Heather, was diagnosed with cancer three days before Thanksgiving.

Lily was only three and one-half months old when her Mom was diagnosed with pleural malignant mesothelioma. In a single afternoon, we shifted gears from holiday planning to fighting cancer. The little I knew about mesothelioma was enough for me to know that the future was very uncertain for my family.  The more we found out, the more I could only see the worst-case scenario.

Even though we received her diagnosis, we celebrated Thanksgiving and Christmas with Heather’s family. Over holiday dinner, we discussed how we would get through the difficult time together. I recall this conversation being one of the worst times of my life. I never anticipated I would be spending Thanksgiving talking about cancer and the financial difficulties it would bring, but that is largely what our conversation consisted of. I remember thinking, “So much for the holidays!”

Over dinner, we discussed how we would handle the diagnosis financially. Heather’s family told us which bills they could help with and which assets could be liquidated to care for her.  I was mortified, but we had no other options. Both Heather and I were working before her diagnosis. Without her income, our funds were diminishing fast, and our expenses growing out of control. I was overwhelmed with feelings of hopelessness and despair.

Several years passed before I could really understand what that day truly meant. I was ashamed and overwhelmed while I was sitting at the table, but our family dropped everything to be by our side. They were willing to help in any way possible, including making huge sacrifices of their own. My pride and my inability to ask for help blinded me to how lucky I was.  It would be a long time before I could see that.

This holiday season I would like to take a moment and remember what we have to be thankful for every gift we have been given. From the kindness and love of family and friends to our healthy little girl, we have much to celebrate. Thank you to the people that touched our lives and helped us when we needed help. I have so many reasons to celebrate this holiday season. My wife has been healthy for over 6 years, despite the poor odds for mesothelioma patients. We’ve celebrated many holidays together, and I’m confident that we’ll have many, many more. I hope that our story can be a source of hope and comfort to other families battling cancer this holiday season.

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Posted on behalf of Cameron, his wife Heather and their daughter Lily with warm wishes for many happy holidays to come.