Hamilton Jordan 1944-2008. Hamilton Jordan, who served as President Jimmy Carter’s chief of staff, died Tuesday, May 20, after a battle with mesothelioma.

This was the fourth time Jordan battled cancer. In the 1980s, he was diagnosed with leukemia lymphoma. About 10 years later, he was diagnosed with prostate cancer. He also had two battles with skin cancer. In 2000, Jordan wrote a book about his experience with cancer, titled “No Such Thing as a Bad Day,” which provided inspiration to cancer survivors.

He and his wife, Dorothy, founded Camp Sunshine, a nonprofit camp for children with cancer, and Camp Kudzu, a nonprofit camp for children with Type 1 diabetes. Jordan also founded the Georgia Cancer Coalition, a $1 billion organization funded by tobacco settlement money.

The Atlanta Journal-Constitution has published the following statement from Jordan’s family:

The Jordan Family greatly appreciates the overwhelming amount of love and support we have received from our friends during the many difficult years of Hamilton’s illness. We are saddened beyond words at his death, but we are also at peace knowing that he is finally comfortable after years of fighting an incurable disease. A truly unforgettable person, Hamilton will be remembered as a compassionate, brilliant, and selfless human being who touched so many lives with his limitless generosity.

In lieu of flowers the family asks that your donations be sent to any of the following charitable organizations:

The Hamilton Jordan Mesothelioma Research Fund at the University of Maryland-Baltimore Foundation, University of Maryland Greenebaum Cancer Center, 100 North Green Street, Suite 600, Baltimore MD 21201

Camp Sunshine, 1850 Clairmont Road, Decatur, GA 30033, enriching the lives of children with cancer through recreational, educational and support programs throughout the year

Camp Kudzu, 4279 Roswell Road, Suite 102, Box 254, Atlanta, GA 30342, providing education, recreation and peer-networking programs for children with diabetes

Community Advanced Practice Nurses, Inc., 173 Boulevard NE Atlanta GA 30312, offering free mental and physical healthcare to the homeless and medically underserved.

A memorial service for Hamilton Jordan, White House chief of staff during the Carter administration, will be held with family and close friends at 2 p.m. on Friday, May 23, at The Carter Center. Seating begins at 1 p.m. President Carter as well as other friends and colleagues over the years, will offer remarks and reminiscences. The event will not be open to press coverage.

Recently, Debi Swagart contacted me to share the heartbreaking story of her father’s death from mesothelioma. Living in a small town in Michigan, Warren Faubert fell ill in December 2001, but was not diagnosed with mesothelioma until May 2002 – much too late for treatment. At the time, she says, not much was known about mesothelioma, even among the small-town physicians who treated him for pneumonia. Here is her story:

Let me tell you a story about my loving Dad. He was my hero, he was my father. In December 2001 he came down with pneumonia and could never get rid of it. He didn’t really think that much about it at the time, and said the doctors were trying many different medicines to help him.

In February 2002 I got a call from my uncle that they figured my Dad had a stroke. My husband and I rushed from Memphis to Escanaba, Michigan. When we got there, what a shock! My dad had been a construction worker all his life, and was muscular and fit, especially in his upper body. He was a short man, about five-foot-five and 185 pounds. When we saw him in February, he weighed only 134 pounds. My husband and I were just shocked by his appearance, how sick he looked.

The doctor walked into the room and told my Dad, “Well, Warren, all the tests show that you did not have a stroke.” But they didn’t offer any answers about what was wrong with him. I thought, “Ok, what is going on?!” We took him home that day and I stayed with him for a week. He felt sure the doctors would help him, so I reluctantly went back home.

After I had been home in Memphis for about a week, a friend of the family called me and said, “Debi, you better get back here. Warren is not good.” I got on a plane immediately.

Dad lived in the upper part of Michigan where there are no major airports, so I flew into Green Bay, Wisconsin, and drove 2 hours to the house. As soon as I walked in, I saw that my Dad had gotten even smaller. He was down to about 110 pounds! His clothes would not fit him – they just fell off his body. I went to the store and ended up getting him a boys’ size 14, which he was able to wear. I couldn’t believe it. How could this happen? What was going on?

The next day I took Dad to the doctor’s office, and they told me he had pneumonia again. I just didn’t believe this, but I wasn’t sure what else to do. Shouldn’t I trust the doctors? But he just kept getting worse. He was wasting away in front of me.

From December 2001 to May 2002 my Dad had infection in his lungs 22 times. He continued to weaken, until we rushed him to the hospital on May 1. He was admitted, but it was a nightmare from that time on.

On May 10, the doctor came in Dad’s room and admitted he had no clue what was going on. I just lost it! I started yelling, “Look, this man is a veteran, and a retired Union man! He has three medical insurance policies. Get someone in here that can help him and can tell us what is wrong!”

They ended up flying in a doctor from the Mayo Clinic. As soon as he saw my dad and looked at his case history, he told me, “I have no doubt your father has mesothelioma.”

I had no clue what he was even talking about, let alone dealing with the fact that he had a cancer that kills in the end, and no one could tell me anything about this illness. You have to understand that back then, there in the upper peninsula of Michigan, there was very little internet access. I didn’t even know how to begin researching it.

Well, they took a piece of Daddy’s lung out for a biopsy, and on May 15 it came back as stage IV mesothelioma. I was just so mad that all this time had been wasted, while his health just deteriorated. It took me getting mad and fighting with them to even get a diagnosis!

I lost my hero on June 7 from mesothelioma. He died the same day my youngest son was to graduate from college. He missed out on that. We’ve missed out on so many things now. At the time of his death, my father’s weight was 76 pounds. I will never forget the way he looked.

Of course, now my family lives in fear that I will get this also from materials my Dad might have brought home from his work on Navy bases. My husband also is retired from the Navy with 23 years, and we worry about his exposure to asbestos. I already suffer from asthma and we worry what could happen if I contract mesothelioma.

Dad served in the Korean conflict at age 17, and no VA nursing home in the upper part of Michigan would take him because they didn’t know how to deal with his illness. I am on a mission every time this is something going on in D.C., from a trust fund to any bill, you bet this daughter of a Vet is on that hill fighting for the rights of meso victims! I will not stop!

Warren Faubert was 69 when he died of mesothelioma on June 7, 2002. He died less than one month after his official diagnosis.

I received an email a few days ago from Nancy Wagner, in Jacksonville, Florida. She found our site through the Lung Cancer Alliance message and journal sites, over at Inspire.com. She wanted some mesothelioma awareness materials, like our awareness bracelets, to share with people around her, in memory of her father, Bill, who passed away with mesothelioma in 2004. Nancy was kind enough to share her Dad’s story with us:

My Dad, Bill [Hackett], was a master mechanic and boilermaker from the time he was 25 until he retired on disability at age 61. During this time he dismantled and rebuilt or built boilers to run some of the company’s largest factories and businesses. He started out at Maryland Ship Building and Dry Dock and then went on to become an independent contractor.

Over the years he was exposed to asbestos hundreds of times, not knowing back then that it would be what eventually claimed his life.

From the time he was retired due to this disability until his death in 2004, he suffered tremendously with breathing disorders from mesothelioma. He faced several surgeries and had to have fluid removed from his body numerous times. There were days he could hardly breathe at all, but he kept going. How I will never know.

Because he had been self employed, there was no insurance because he could not afford it. And social security did not pay very much on a monthly basis. Being a decorated WW II veteran, he was entitled to some treatment through the Veterans Administration.

My father was a very independent man and refused to give up or give in to anything that stopped him from doing what he wanted and going where he wanted. And he refused to be a burden on any one, especially his daughters. Until the week he died he continued to serve as Chaplain of the American Legion Post and made arrangements for former veterans’ funerals and assisted their families.

But he never told us about the cancer. He went to all of his chemo appointments and never told us anything. It wasn’t until after his death and the Death Certificate was issued did we know this is what took him. He died alone, 2 weeks before Christmas, in the house where we grew up.

My dad was truly a great man. I believe the reason he never told any of us was because we lost our Mom to cancer when she was 34 and he was 36 and he didn’t want us to have to face losing him to cancer, even though it was a different kind.

Almost 2 years after his death, I found out that I have stage IV lung cancer.

Cancer in any form is life threatening. The more people are aware of the signs and symptoms of cancer, the better off they will be. Annual checkups are vital. Don’t wait until it’s too late. Cancer caught early can be cured. The later the stage, the more intense the treatments and the less chance for remission.

I’d just like to thank Nancy for sharing her Dad’s personal story with us, and for helping to raise awareness and urge for early detection and research. God bless you.

Ok, it’s out there. I said it. Death. It’s not a subject that I go into with most of the people I talk to about mesothelioma. Even if we acknowledge that mesothelioma is diagnosed as a terminal disease, most of my conversations are about treatment options, support groups, awareness, and, ultimately, hope.

A couple of days ago I wrote about the closest topic I’ve seen along these lines, which still involved ways to find a silver lining in the struggle. Obviously, it’s a very necessary part of such a diagnosis. But it’s still about hope.

But today I came across an interesting essay, penned by Monica Sanford, a graduate student at the University of Nebraska-Lincoln, that is forcing me to look at another reality of mesothelioma. Its title, “Inevitability of death leads to freer living,” was immediately arresting. The author jumped right in with, “I thought I should write about death.” She went on to share that she has recently lost three people very close to her in fairly rapid succession – a paternal grandmother, a maternal great-grandmother, and her dear friend, Marilyn. Marilyn died of peritoneal mesothelioma at age 47.

As she ponders the very different lives and deaths of these people she loved, Monica wonders at a common thread – all knew they were nearing death, two as a result of illness, the other just sensing her time was nearing an end, even sharing with her great-granddaughter just a month before her death that she had walked with God, who showed her a waiting heaven.

That’s a truly unique aspect of this diagnosis. The knowledge, the clarity, the preparation for death. Everyone knows they will one day die, of course, but that day is always a long way off. Illness of this kind brings it into sharp relief.

In the post I wrote a couple days ago about silver linings, most people said the one thing they could credit their disease for was giving them a sense of the value of their time on earth. That knowing their illness was diagnosed as terminal gave them often times a will to fight harder and stay longer, because they saw with new eyes all the things they really wanted before they would be ready to go.

There’s a saying, “live each day as if it was your last.” But in the everyday hustle and bustle, it’s so hard to keep that in mind.

Monica’s essay reflects on faith, traditional Christian faith like that of her great grandmother, as well as her own, different, Buddhist perspective, and observes the different ways that her family members mourn, or celebrate, or deny at a loved one’s passing.

In the end, she finds that, for her, “The one thing I have that helps me cope with death in my life is not faith or family or hope. It is acceptance. Death is. Just like life is. Neither is good nor bad – they just are.”

But still, it hurts to let go.

Monday, Minnesota Gov. Tim Pawlenty signed the bill that will provide $4.9 million for a mesothelioma research study. The bill unanimously passed the Senate, and passed by a vote of 121-1 in the House.
The 5-year study, which will be conducted under the direction of the University of Minnesota, will analyze death records and conduct screenings of current and former Iron Range mine workers and their families. The study will determine if there is a link between mesothelioma and the taconite fibers produced by the mine. To date, 58 Iron Range workers have died of mesothelioma.

The study also will include environmental research.

Funding for the program will come from a special insurance fund overseen by the Department of Commerce.

Today the Minnesota House of Representatives passed the bill that will provide $4.9 million for a mesothelioma research study, by a vote of 121-1. The bill unanimously passed the Senate on Monday. It now goes to Gov. Tim Pawlenty, who is expected to sign it.

The study, which will be conducted under the direction of the University of Minnesota, will analyze death records and conduct screenings of current and former Iron Range mine workers and their families. To date, 58 Iron Range workers have died of mesothelioma. The study also will include environmental research, and is expected to last 5 years.

Funding for the program will come from a special insurance fund overseen by the Department of Commerce.

I recently posted about the progress of a new drug to treat mesothelioma, called ONCONASE, which has completed Phase IIIb clinical trials and is being fast-tracked for approval in the U.S. ONCONASE already has orphan-drug status in the EU and Australia.

This week, I found a story that provides even more hope. It seems a Madison, Wisconsin-based biotech firm, Quintessence Bioscience, also has a promising mesothelioma drug in the works that operates along the same lines as ONCONASE, tagged QBI-139. The Quintessence drug is not yet in clinical trials.

Both drugs target RNA in cancer cells. They are therapeutic ribonucleases (RNases), which WTN News (Wisconsin Technology News) writer Steve Clark describes as “ubiquitous enzymes that destroy RNA.” He explains that researchers including the University of Wisconsin-Madison’s Ronald Raines, “discovered that RNases from non-human species sometimes are not regulated inside human cells and can cause cell death. Surprisingly, cancer cells are much more susceptible than normal cells to foreign RNases.”

The ONCONASE product is made from purified frog eggs. The Quintessence drug is 95 percent human, but still kills human cancer cells, Clark reports. Both drugs can kill a wide range of different human cancer types, he says, so its application has broad potential. The ONCONASE clinical trial data is from patients with malignant mesothelioma.

Clark reports that Quintessence is optimistic about its QBI-139 surpassing the positive results of ONCONASE. He says that frog-derived ONCONASE has been shown to cause allergic reactions in some patients, which would be mitigated in the 95 percent human-gene QBI-139. Additionally, he reports QBI-139 is less toxic than ONCONASE, which will allow it to be better tolerated by some patients in larger doses.

Currently, Clark reports, QBI-139 is being produced for use in a Phase I clinical trial, which is set to begin this summer and end sometime in 2009. It is anticipated that the trial will be held at the University of Wisconsin Carbone Cancer Center.

Read the full article at WTN News.

Steve Clark, Ph.D., is a former professor and medical researcher at the University of Wisconsin School of Medicine and Public Health, and is currently a freelance writer and consultant on biotechnology issues.

About 5 minutes into Linda Garmon’s documentary about cancer, titled The Truth About Cancer, which aired last night on PBS on Alabama Public Television, I started crying. I was a mess through most of it. Garmon films her husband, Larry D’Onofrio, who is diagnosed with mesothelioma, and records his journey. Within two years, he has died.

About six years after his death, Garmon revisits some of the cancer centers where Larry was treated, and talks to doctors, patients and family members of those suffering from a variety of cancers – pancreatic, lung, breast, prostate.

The documentary explores the complicated maze of cancer treatment, which is so widely varied partly due to the many variations cancer takes within the human body as it mutates genes. It also looks at how cancer affects people’s relationships, with the person battling cancer oftentimes also feeling the pressure to “beat it,” to “win” over cancer, a feeling of pressure that it’s somehow up to them to get well.

Garmon touches on the issue – why are people still dying of cancer? She shows news footage of President Richard Nixon declaring war on cancer. And here we are still fighting.

Larry D’Onofrio built his family’s home, and worked on other construction projects. It is suspected he contracted mesothelioma as a result of asbestos exposure in that work. Garmon wonders, “why him?” when others who worked alongside him are healthy today.

I write about mesothelioma every day because it’s my job. But I’m touched by the people I meet who share their stories. I’m amazed by the patients who agree to clinical trials even when they understand that there probably won’t be a miracle cure for them, but because they understand that by doing so they might help someone after them.

And I’m touched by the people affected by mesothelioma who work for awareness. To reach out from their place of pain to try to bring the issue to light – that’s strength almost unimaginable. Thank you, Linda, for having the strength to share your story, the story of you and Larry and the hardest battle you ever had to fight.

PBS will air the documentary several more times in the coming weeks. If you missed it last night, I urge you to check your local listings and make a point to see it. It’s powerful, and it’s a message more people need to hear.

As part of its “Take One Step” health campaign, PBS will air a documentary titled “The Truth About Cancer” tonight (Wednesday, April 16, 2008). Award-winning filmmaker Linda Garmon shares the story of her husband’s battle with and death from mesothelioma.

During the program, which strives to answer the question “Why does anyone still die of cancer?”, Garmon visits the facilities where her husband was treated, and interviews people who are undergoing treatment for various types of cancer, and interviews doctors and researchers working for a cure.

PBS describes the film as, “Part science, part personal catharsis, part character-driven storytelling, this powerful documentary uncovers the truth about cancer and tell us where we stand in fighting the battle against the disease. ”

The program is slated to air in most markets at 9 p.m. ET. In Montgomery, Alabama, where I am based, the show is scheduled for 8 p.m. CT on WAIQ, Alabama Public Television (APT).

Following the film, journalist and breast cancer survivor Linda Ellerbee will host a 30-minute follow-up panel discussion covering topics including the importance of early screening, what to expect if a loved one is diagnosed, and how to live with cancer.

Please check your local listings for this very important program! It is critical to realize that cancer is an issue of national importance in public health, and that much more needs to be done to enhance funding and research for all types of cancer.

Find more information about this program at the official PBS site for the film.

The ITL Experience

While undergoing chemotherapy to treat her mesothelioma, Charlene Kaforey had time to explore her options. As a Stage III patient, she was worried about her chances for quality of life or even long-term survival if she underwent surgery.

During this time, she found information about the ITL Alternative Cancer Treatment Clinic, located in Freeport, Grand Bahama Island. After talking to patients who reported success, she decided to try this unusual route for her own treatment.

She made her first visit to the clinic January 7, 2008. Mesothelioma patients like Charlene initially complete an 8-week course of treatment, which includes daily blood tests, several injections daily of a serum designed to boost the body’s immune system so that it can fight the cancer, and intravenous vitamin C plus two shots of cancer vaccines, twice per week, she says.

The blood work is to monitor the body for responsiveness to the treatment in order to fine tune it to the patient and set up an ongoing course that is administered by the patients themselves after leaving the clinic, Charlene says. Treatment at ITL is a process that lasts for the rest of your life, she explains.

Now back home in New York, she administers her own shots eight to 12 times per day. She also is continuing the intravenous vitamin C at home, although she says that is optional. She also needed to complete 5 of the 12 weeks of the cancer vaccines at home. Patients return to the clinic every four months for two weeks at a time for re-evaluation and adjustments to their serum regimen. Charlene is scheduled to return in June.

“What they tell you at ITL is that it will not necessarily make the cancer you have go away, but will hopefully prevent it from spreading any further,” Charlene said. “So if they can do that, and give me six years, that would be wonderful. That would be six quality years instead of two miserable years.”

Patients considering ITL need to know that because the facility is considered alternative medicine, it is not accredited by the American Medical Association or other governing boards of that type, and some insurance companies will not cover the cost of treatments.

ITL requires payment at time of services, which, according to the clinic’s web site, for Immuno Augmentive Therapy (IAT) of the kind Charlene receives, run around $7,500 for the first four weeks and about $700 per week thereafter. That cost does not include the vitamin C IV’s or the vaccines. Patients also must cover the costs to travel to the facility, and for accommodations during their eight weeks of treatment.

“Everyone has had different experiences [with insurance],” Charlene said. “I submitted my bills to my insurance company and I’ll just see what they do. Some people get partial payment, some insurance pays nothing,” she says. “But what’s your life worth to you?”

In addition to the financial challenge, there also is the issue of travel and time away from family. Charlene was lucky; she had different family members with her throughout her 8-week stay. They became as much a part of daily clinic life as she did.

“Seeking treatment at the clinic definitely involves family decisions. The cost is a major consideration and so is the time away from home. While the cost is much less than the approximately $200,000 price tag involved with the surgery/chemo/radiation regime, insurance will pay for those debilitating treatments. Plus, knowing you may have limited time remaining, do you want to leave family and friends for 2 months,” Charlene said. “It is a really individual decision. You have to look realistically at what your own choices are and what you need to do for yourself and your family. We viewed this as an investment of time and financial resources for the long term. Two months away is worth it if I get 4-6 more years with my family.”

A big part of Charlene’s experience at ITL was meeting other mesothelioma patients, as well as people with other types of cancer, and sharing stories. Her last week at the clinic, she said there were seven mesothelioma patients there, all around the same age – mostly women in their 40s and 50s, with whom she felt a real connection.

“You talk to real-life people who are there, who are surviving and living quality lives after their doctors had told them there was no hope. The stories are so different and so amazing, and yet you share so much because you’re all going through this. It gives you hope to meet patients who have survived 28, 20 ,12 or even 4 years after being given a death sentence,” Charlene said.

That connection with other patients has led Charlene to explore forming an outreach and support group where she lives, in Rochester, New York, where she plans to work for fund raising for a cure and to raise awareness of mesothelioma.

Alternative medicine is controversial. Its results often do not have a long history of documentation. People who choose this route understand that they are stepping out into largely uncharted waters.

Charlene is happy to share her story with others who are facing mesothelioma in their own lives, either as a patient or as a family member of someone with meso.

If you would like to talk with Charlene, please email wendi@mymeso.org and I will be happy to forward your information to her.