Guest Blogger - Rachel

Rachel is a long term survivor and has been blogging for a number of years, she recently contacted me to ask if I could share her insight on her approach on my blog so without further introductions from me I had this posting over to her.

Blogging the Cancer Frights Away

By Rachel Pappas

www.1UpOnCancer.com

When I heard the three dirty words: “You have cancer,” I wasn’t shocked. Two weeks earlier, the radiologist walked into my cubical at the imaging center and threw the “c” word out, while I lay there, staring at the ultrasound screen. Days later my breast surgeon reconfirmed the probable writing on the wall as she stuck me with the biopsy needle.

By the time the official call came, I had myself diagnosed as a gonner—I'd had far too much time to spend on the Internet, and the data floating out there rocked me. Does it help to read for a third or fourth time: “carcinoma associated with poor prognosis”? Do we need to read sterile-sounding clinical-ese that we don't understand beyond that it has freaky vibes? What does it do for us to sweat over five-year survival rates? And FYI if you don't know yet: these numbers are typically based on 10-year-old studies.

I moved past surgery, still frozen with fear. But it started to thaw, slowly, in the chemo suite.

Who would have thought sitting with a bunch of bald ladies, attached to a fluid-filled bag for a few hours, would be my happy time?

But as we shared our boob-related jokes and PBJ sandwiches, I didn’t just see a disease. I saw moms. Teachers. Funny, inquisitive, chatty human beings. We started talking about anything but cancer. Though sometimes the conversation went back to the monster. We talked about what to say to our kids. Where to buy cranial implants (aka wigs). How fricking scared we were when we first got hit with the “You have cancer brick.”

This is why I decided to start blogging. I remembered how blown away I was when I first got on the Internet as a brand newbie. I thought about all the questions my chemo clique ladies had. I thought about the things that mattered to us now, and about the things it helped us to talk about. I was going to create a safe, happy place.

When we first hear we have cancer, we need the positive—we need it right then.

And we need it for the rest of our lives, because life’s never the same again.

Being a 20-plus-year health writer, I had my work cut out for me when I launched my site. But I still had lessons to learn because I needed to know how to only do the positive. I had to figure out how to not overpromise, to be real and informative—but still be comforting, even funny. How do you find this kind of happy fodder EVERY SINGLE WEEK? I mean we’re talking about cancer!

But as I put my feelers out, I found it was out there—tons of it. Stories to tell about cyberspace friendships that it takes an experience like cancer to understand and embrace. Stories on retreats where survivors do zip lines, paint, dance, laugh and cry together. Stories on ways we can care for ourselves moving forward (there’s so much our docs don't tell us.) Other survivors’ mountains, and how they’re taking them on.

Call me selfish, but I blog as much for me as for you and whatever warriors stop by.

I use it to keep me straight. How can I write about what good eating and sleeping does for us … how can I ask people to open up to ideas like guided imagery and wacky sounding concepts like laugh yoga unless I try them myself?

Then there’s the inspiration I get from the others. The ones who are in a hard place, but not giving up, still looking for what will help them beat this monster and or live as fully with cancer as they can.

When I see the flurry of clicks on my articles on end of life care, or managing metastatic disease, it breaks my heart, but it lifts me too. I am reminded, I had cancer, but today I am in a better place than so many. Still, they are searching, connecting, hoping—actually taking the time to thank me—so they are my medicine. All the folks I meet through cyberspace are my lift—no matter their stage or circumstances. We keep on keeping on, together.

Thanks Rachel for that inspiring piece of literature!

I think all of us who blog are hoping it will help some one out there with cancer, even just letting them know you can live a normal life but equally in letting people know you are allowed to feel rock bottom once in a while.

Seth MacFarlane: An Oscar Host who is Harmful to Comedy and the Public’s Health

This week’s post for Pop Health was co-written by Beth Grampetro, MPH, CHES. Beth has been working in college health promotion for 7 years and her interests include feminism online and in popular culture. You can follow her on twitter @bethg24. 

The role of society is important in public health.  Health is not just influenced by individual decisions and behaviors.  It is also influenced by our interactions with the world around us- our communities, our families, our workplaces, our schools, entertainment, celebrities, and the media.  These interactions can have a very strong influence (good or bad) on the public’s health.

With that in mind, we were horrified to witness host Seth MacFarlane’s monologue and ongoing commentary during Sunday night’s Oscars.  According to Nielsen ratings, approximately 40.3 million viewers tuned in to the Oscar telecast.  This broad audience watched MacFarlane, a widely known celebrity, make jokes about domestic violence, female actresses’ bodies, and various forms of discrimination.

In the opening number, MacFarlane sang a song entitled “We Saw Your Boobs”, about the scenes in various movies where actresses in the audience had appeared topless. While it has been reported that the actresses were in on the joke, it is nonetheless disturbing that this number passed muster- especially given that several of the scenes he referenced were from movies where the actresses he named portrayed rape victims.

Other jokes included a reference to Jennifer Aniston’s past as a stripper, a congratulatory statement about how great all the actresses who “gave themselves the flu” to lose weight looked in their dresses, and a comment about how Latino actors (in this case Javier Bardem, Salma Hayek, and Penelope Cruz) have difficult-to-understand accents “but we don’t care because they’re so attractive.”

MacFarlane also tried some jokes that had men as their targets but still managed to get mud on a few women in the process. He joked that Rex Reed was going to review Adele’s performance (a reference to Reed’s recent movie review in which he called Melissa McCarthy a “hippo”) and made a joke about 9-year-old nominee Quvenzhané Wallis dating George Clooney. Some defenders of MacFarlane’s performance argued that these jokes were meant to be about the men in question, but ignored the fact that they were made at the expense of women and girls.

The Oscars are billed as “Hollywood’s Biggest Night”, and it’s incredibly disappointing to see what is the biggest event for the entertainment industry turned into the worst office party in history, complete with a leering coworker who’s creating a hostile environment.  If MacFarlane succeeded at anything, it was reminding women that they’re expected to always be thin, be pretty, and be willing to shut up and take it, lest they spoil the whole evening.

There is evidence to show that (unfortunately) these types of jokes and messages that devalue women are believed and internalized within our communities.  For example, a 2009 study by the Boston Public Health Commission found that over half of teens surveyed blamed the singer Rihanna after she was beaten by her boyfriend Chris Brown.  In addition, research shows that a mere 3-5 minutes of listening to, or engaging in, fat talk can lead some women to feel bad about their appearance and experience heightened levels of body dissatisfaction.

Research also tells us that these internalized messages and social norms are correlated with serious public health outcomes.  For example, the CDC outlines the risk factors for sexual violence perpetration.  Under society level factors we find (among others):

• Societal norms that support sexual violence
• Societal norms that support male superiority and sexual entitlement
• Societal norms that maintain women's inferiority and sexual submissiveness
• Weak laws and policies related to gender equity

So the issue is much bigger than if Seth MacFarlane was funny or made a good Oscar host.  The issue is about the quality of the role models we choose to represent our communities and the messages they send.  These messages can have a broad and long lasting influence on public health.  We hope the Academy will choose wisely next year.

Can't decide what to do

Ok we had snow yesterday, quite a heavy down fall, today we had more, but not as much so I took the opportunity and went with hubby and dogs off to the fields.  We just got part way down when the snow and wind picked up but I wasn't going back, oh no I was out for a walk and walk I was having.

 

Bear thought he could knock me over while we were having our photo taken, believe it or not but it was snowing when this was taken but I guess the woods were sheltering us.

 

Since returning we have finished the Sunday Times Crossword, a feat in itself, and now hubby is up the shed making an Owl Box and I just don't know what to do with myself.  I pulled up the video program but I just can't get into doing any editing of our honeymoon, yes still stuck on those tapes, my computer monitor driver keeps crashing while doing it, so I am getting a tad annoyed with it all.

 

Blogger has developed some sort of problem, God knows what and keeps freezing, I think I have either over worked my black box or the whole cyber space thing is having a bad time!

 

The ironing is waiting for me, I have work for work to do which is spread across part of my desk here at home, my book to sort, although waiting for the cover I could be getting the bookmarks for chapters sorted but I just don't understand the directions on publishing it!  I could do a slide show of the photo's I have taken off the video, I could even go and help hubby cut his wood and screw sides together but I'm just not in the mood.

 

I have another guest blogger writing an article for the blog, she is a long term survivor of breast cancer and has a quirky way of writing and of course doing fact finding on staying ahead of cancer.  Although breast isn't anything like ours I hope you find her story interesting.

 

Debbie is still in hospital with her infection, Tess is getting ready to battle with chemo once again, Steve has finished and still on the body is fighting to feel Normal again, Mavis and I are still inactive stable, well I hope we are!  So why am I in this mood, my meds went in on time (sometimes taking them late can affect my mood) maybe my body is calling for one of those days on the sofa, but to be fair every night from 8pm I am usually sat on the sofa watching whatever is on TV.  The nights are quite boring because I seem to finish on the computer then its just sitting, but maybe today I need that, who knows.

I need some stimulation to get me into gear, maybe a new project but one that doesn't have me sat in front of the computer.  I was asked by someone who has read my book when I'm giving her the next one, heavens am I ready to start with the next one?  Actually I have started it but I can't get back into it!  I have set a wager with a fellow blogger that we will write together as we both want to write books - I need to get into gear to keep up my end of the bargain.  I feel that I have so much going on but then not enough, maybe I am bored I don't know!  Ever feel you start things but never finish them?

As for my meso circle, I have to say all is quiet, that means everyone I know is hopefully doing well and staying stable.  I did hear from Bud the other day, Chrissi has had cryoablation on some of her tumours and I believe is starting some form of chemotherapy.  I hope it works for her as the news it returned so soon after surgery was a big shock.  My thoughts, as always, are with anyone who is fighting this terrible cancer.

On another note, I passed my healing assessment, which means I can practise healing in the SNU churches.  I am so pleased because it was a goal that I had set after surgery. 

Well on that note I guess I should close, I hope you did something enjoyable today and something that you really wanted to do.  Me, I can hear that sofa calling my name.

Johnson Family Advances Mesothelioma Research with $500,000 Pledge to The Pacific Meso Center

February 13, 2013, The Pacific Meso Center accepts the very generous pledge of $500,000 from the family of John Johnson to help build an innovative research and clinical care program between PMC and the Department of Veterans Affairs with the purpose of improving the way veterans are diagnosed and treated at the VA. “We want to help other families get diagnosed as early as possible, so that patients have a fighting chance to survive,” said Sue Johnson, widow of John Johnson.

The Johnson family encourages action with matching pledges to support the proposed Admiral Zumwalt Mesothelioma Research and Treatment Program, named in honor of Admiral Elmo Zumwalt, who died from mesothelioma nearly twelve years ago, and all Veterans fighting this horrible disease.

Click here for official press release of Pacific Meso Center.

The problems with a False Diaphragm

My appointment arrived to see the Stomach Specialist Dr V so last night with anticipation we went to see him for the final results and debate about my bile problem.  I had emailed a doctor friend for his opinion too.

 

Our Chest space is known as negative whereas below our diaphragm is known as positive, the job of the diaphragm is keeping the two areas separate as the positive is always looking for weakness in the negative and my diaphragm is weak.  The stomach has pushed up in between the gap of the two sides and a good 2 inches of my stomach now resides in my chest area.

 

Under normal circumstances this would be repaired, its a type of hernia, with another piece of membrane fixed over the weakened area and the stomach gently brought back down to its correct position, but I'm not normal. 

 

To operate he would need to go above the diaphragm to repair it, my meso area.  To pull the stomach back down could result in disturbing the meso cells and spreading it down into the abdomen.  It just isn't my luck is it, Quality of Life is important and this blights mine everyday.

 

My only concern now is if the stomach is higher and in the meso zone then can the meso attack the lining around my stomach anyway?

 

I always remember hoping I didn't lose my diaphragm during surgery and asked John how would I know if it had gone, he told me I would have a tube going down my nose into the stomach.  The first thing I did when I woke up was felt the tube and I cried, why I don't know I knew I didn't want the diaphragm out but I didn't understand why.  Although keeping it wasn't an option or saving it would have been a waste of time as it was covered both sides with mesothelioma.

 

I doubt I am the only person who suffers from this as many have now undergone surgery and surely many have also lost this membrane.  So if you are one of those people and suffer how do you cope?  I have lifted the bed again another 2 inches in the hope that gravity works in my favour but to be honest having all the bile just resting in your stomach isn't pleasant either, but which is the best an even coating from bowel to throat or sitting like a dead weight in the pit of your stomach.

 

On that note I had better pick up my things and get to work, another long day ahead but an appointment with the hairdresser late this afternoon, I must admit I need it, I can hardly see through my fringe!

Standardizing Surgical Treatment in Malignant Pleural Mesothelioma

As published in the Annals of Cardiothoracic Surgery November 2012 issue.

Malignant pleural mesothelioma (MPM) affects each individual uniquely, and due to the rarity of the disease, trending widespread results to treatment can be difficult. This is due to the fact that most of our knowledge of MPM results from retrospective studies performed by single-institutions and prospective phase I or II trials typically involve a small numbers of patients. In addition, staging of MPM can be difficult and in many cases inaccurate due to the parameters of current imaging technology.

When operating on any tumor the goal is always to remove as much of the tumor as possible, this is especially difficult because of the areas MPM manifests such as the lining of the lungs and other organs. In MPM, patients typically undergo either an extrapleural pneumonectomy (EPP) or a pleurectomy decortication (PD), and are then treated with radiation or chemotherapy or both directly after surgery in an attempt to kill off any remaining tumor cells.

In an attempt to standardize MPM treatment protocol, the International Mesothelioma Interest Group (IMIG) and the the International Association for the Study of Lung Cancer (IASLC) collaborated to address the deficiencies in the staging of MPM. With the goal of improving the staging system for MPM, the Mesothelioma Domain was established. The previous system for staging was based only on data collected involving surgically treated patients. The Mesothelioma Staging Project will include data from surgically and non-surgically treated patients.

Based on a multinational survey performed, the following terminology was recommended for the Mesothelioma Staging Project:

• Extrapleural pneumonectomy (EPP): en bloc resection of the parietal and visceral pleura with the ipsilateral lung, pericardium, and diaphragm
• Extended pleurectomy/decortication (EPD): parietal and visceral pleurectomy to remove all gross tumor with resection of the diaphragm and/or pericardium.
• Pleurectomy/decortication (P/D): parietal and visceral pleurectomy to remove all gross tumor without diaphragm or pericardial resection.
• Partial pleurectomy: partial removal of parietal and/ or visceral pleura for diagnostic or palliative purposes but leaving gross tumor behind.

The purpose of the IASLC making these recommendations is to set a framework for publications which will allow better understanding of procedural trends and to standardize surgical classifications of MPM, not to necessarily govern the language used by individual surgeons.

Another area needing further definition is macroscopic complete resection (MCR) which is the complete removal of a tumor. MCR is difficult in MPM due to the locale, and often trace amounts of the tumor are left behind after surgery. Determining the exact amount of residual tumor is difficult and not all surgeons agree that MCR is accomplished if any tumor is left behind, no matter how small. A scoring system for other malignancies has been developed based on the amount of tumorous tissue remaining and is referred to as the Completeness of Cytoreduction Score (CC score).  A similar gaging system would be beneficial in regards to MPM as leftover tissue after surgery directly correlates to survival and continued treatment.

Additionally, lung cancer patients undergo lymph node sampling at the same time as the cytoreductive surgery to assess lymph node involvement. MPM involves the same lymph nodes affected in lung cancer, but also ones not typically affected in lung cancer. The Mesothelioma Domain of the IASLC Staging Committee is currently devising a lymph node map for MPM which will allow for a more detailed prognosis and accurate staging of the disease.

Our understanding of MPM continues to develop and research is becoming more prioritized as knowledge of the disease becomes more commonplace. Establishing a standardized approach to MPM will not only allow researchers to discover clearer parallels among studies, but also assist in developing a widespread protocol for diagnosis and treatment.

Click here to view the full article.

3rd International Symposium on Lung-Sparing Therapies for Malignant Pleural Mesothelioma

The office of Continuing Medical Education at the David Geffen School of Medicine at UCLA and The Pacific Meso Center at the Pacific Heart, Lung & Blood Institute is holding the 3rd International Symposium on Lung-Sparing Therapies for Malignant Pleural Mesothelioma (MPM), on Saturday, May 18th at the Sheraton Delfina Hotel, Santa Monica. 

Dr. Robert Cameron Director of the UCLA Mesothelioma Comprehensive Research Program and Chief of Thoracic Surgery at the West Los Angeles VA Medical Center will lead the symposium again this year. Mesothelioma experts from the United States and as far afield as Italy will gather to discuss the latest treatments and research for MPM.

For Further information and to reserve your place, please click here, or call 310-794-2620.

Guest Writer - Nancy Meredith

Writer Hopes to Make a Difference for Mesothelioma Patients and Their Families

 It is both an honor and a privilege for me to be invited to write a guest blog for Jan Egerton. I have only known Jan for a short time, but her enthusiasm for life and unwavering fight against mesothelioma has inspired me in so many ways.  Personally she has inspired me to live each day to the fullest and not to take anything for granted. Professionally, Jan has helped me sharpen my focus on finding and reporting on important breakthroughs in mesothelioma research.

 A diagnosis of mesothelioma or lung cancer can bring life to a standstill for many families. Nearly 10 years ago, my father was diagnosed with stage IV lung cancer, and in just six short months he had succumbed to the non-forgiving disease. Although my family and I frantically searched for as much information as we could find about lung cancer, we didn’t really know where to turn or what to do next. After he died we were left with a feeling of hopelessness and guilt that maybe we didn’t look in the “right” place for that valuable piece of information that could have extended his life. That same scenario plays out frequently for mesothelioma patients and their families.

 There are virtually hundreds of thousands of websites that offer information to the public about mesothelioma, but finding a website with clear, accurate and timely information is the key to ensuring patients and their families get information that can make a difference in their care. In my position as a writer for MesotheliomaHelp.net, I am able to use my energy and passion for writing to bring the most current and pertinent mesothelioma information to patients and their families in one location. My goal is to provide the critical information to families battling mesothelioma needed to empower them to work with a medical team that will allow them to proactively participate in making the decisions for their care.

 The Mesothelioma Cancer Resources Blog is updated daily with timely information related to mesothelioma clinical trials, the latest research and treatment news, human interest stories about and from patients and their families battling the disease, federal regulations, policies and laws on asbestos and mesothelioma as well as other pertinent topics. I believe it is important to keep the information fresh, and reporting every day about mesothelioma ensures that I am constantly scanning all sources for breakthroughs in the field.

 Ricki Lewis, PhD, geneticist and author of “The Forever Fix: Gene Therapy and the Boy Who Saved It,” has proven to be an invaluable resource for me as I report on gene therapy. Ricki has not only written guest articles detailing the intricacies of gene therapy, but she has guided me to relevant topics, and educated me about the background and future of genetics in cancer therapy. Her support ensures that our readers get accurate, factual information.

 Most recently, I have had the pleasure of working with Jennifer Gelsick as she shares the ups and downs her family has faced as her father, Don Smitley, battles mesothelioma. Jennifer has led our readers through her father’s initial diagnosis of mesothelioma, through his surgery and treatments, and to his new life as he fights to keep the mesothelioma from coming back.  Jennifer continues to provide critical hints and tips to families on topics ranging from traveling for treatment to adjusting to life after treatment. Her stories can be found in our “Faces of Mesothelioma” section of the website.

 Jan has allowed me to bring her struggles of mesothelioma to our readers as well. Since her diagnosis over a decade ago, Jan has remained steadfast in her resolve. During that time she has built a network of others dedicated to the same result – finding a cure for this “nasty cancer.” Jan’s advocacy and support has given many people in England and the United States a place to turn when looking for the real-life struggles a mesothelioma patient faces every day.

 The latest addition to the blog is the Nurse’s Corner. Lisa Hyde-Barrett has been a thoracic surgery nurse for nearly 25 years, and she has had the privilege of caring for countless mesothelioma patients over the years. Lisa will offer medical information to the readers.

Like Jan, Jennifer and others, I hope in some way I can make a difference in the mesothelioma community. I also hope that I am the one who breaks the news when a cure is found.

 About Nancy Meredith:

 Nancy is a former IT professional who now dedicates her time to writing about mesothelioma. When she isn’t writing, she is running or biking for fun or to help raise funds for cancer research. Nancy lives in Wake Forest, North Carolina with her husband and their dachshund, Scooter.

Simple life

I truly live a simple life, the only things I truly plan now are holidays and have even put the boundaries out on those from 6 weeks in advance to 5 months.  I remember last February for some reason I thought Christmas 12 would be my last and as the year progressed I was sure it would be, what with the chemo having a reaction which meant I wasn't allowed any more.  Yet my miracle happened and that first infusion did more damage than those previously endured years earlier.

 

So my simply life is work, dogs, husband and holidays, although I shouldn't class work as simple over the years it has stressed me out.  The houses under development and the changes I made to the internals to make them more attractive to the buyer.  The market crashing and sales standing still, the cold winters I spent up on site.  In fact this is the first winter for a few that I wasn't having to go to site and ensure all was going as I expected.  But I always find projects to do, if not the houses then large changes to our databases that take weeks of planning and writing, I have found I need these things to keep my mind active and away from Mesothelioma.

 

I opened up a program for the housing that I haven't used for several months and I just couldn't remember how to use the thing.  The other day I had to go into the back ground programming of one database but could I for the life of me understand what I had written or indeed how to repair the error message someone was receiving.  So keeping my brain working is good on the one hand but my brain isn't working as well as it did, say even a year ago.

 

I have had a couple of people doing guest articles for me, I have found them interesting how they arrived at working for Websites that are there to help us with this terrible disease.  I have become friends with those who have published and I have at least one more to do.  Nancy is a writer for another website on Mesothelioma, she actually writes the blogs and checks out the latest trial information then turns it into something we can understand.  We were emailing the other day and it struck me how even though she has a 'normal' life, it isn't that much different to mine.  I keep saying the only thing wrong with me is Mesothelioma, (and Bile) but I don't ail with everyday problems most people have.  How often do we catch colds - Stomach bugs etc?  I think our immune system is fighting really well, it keeps us pretty much safe from many of the bugs that float around.

 

I have taken the opportunity of working at home most of this month and quite a lot of last, for the first time in years I am half way through my Audit for year end, I am hoping that we will have good weather this year and I will take more time out of work completely and spend it with hubby and the dogs in the garden or walking some beaches somewhere.  I also must start using my fantastic Nikon D3 camera more and do what I wanted to do, catch wild life at their best or worst as the case may be.

 

I would love to go back on a Safari but I know this would be out of the question, the long haul flight for a starter isn't advisable, but if you ever get the chance to do one, do it.  The best 3 days you will ever have sitting watching all types of animals in their natural habitat.  I guess my camera will just have to snap the dogs in the near future.

 

I am sitting here with the sun shining through the glass and although the morning started with its usual dread I feel uplifted.  The sky is a perfect blue, the birds are chirping away and I have the house to myself, for a while anyway.  I hope the sun finds your bones to wash across and give you a lift.

 

Special thoughts to Debbie and Tess, both of whom are having a rough time at the moment.  Debbie is in hospital with a chest infection, her start date for chemo has been put back and Tess will be commencing hers soon.  I hope the sun helps lift their spirit today too.

Bloggers Rally to Defense of Defamation Defendant

I have previously written about Crystal Cox, a self-styled investigative blogger, who found herself on the receiving end of a judgment for $2.5 million after she posted caustic comments about a bankruptcy trustee.  You can find the prior post here.   One aspect of the District Court's opinion which raised my eyebrows was the court's stingy application of the media privilege.    Under the District Court's view, most bloggers would not be entitled to some of the protections available to the professional media.   

Apparently I was not the only one who thought this to be a strange result.   UCLA Professor Eugene Volokh, who blogs at the Volokh Conspiracy is representing Ms. Cox on a pro bono basis in her appeal to the Ninth Circuit.   Scotusblog.com, the leading Supreme Court blog, and the Reporters Committee for Freedom of the Press have weighed in with amicus briefs.    

In an unusual twist, the Plaintiff sought to have the Sheriff levy upon and sell the Defendant's right to appeal.   By auctioning off the right to appeal, the Plaintiff could effectively insulate its judgment from judicial review.   Prof. Volokh successfully obtained an order from the District Court blocking this relief.   You can read about it in his own words here. 

I am pleased that the Plaintiff's nefarious tactic was rebuffed and that there are some serious amici weighing in.   This case raises important issues about the First Amendment protections applicable to the citizen media.

Grand Opening of Pacific Meso Center’s Research Laboratory, Los Angeles, CA

Dr. Robert Cameron with oncologist 
Dr. Olga Olevsky both of whom are
a part of UCLA’s Comprehensive 
Mesothelioma Program and 
members of PMCs Scientific
 Advisory Board 

On February 13, 2013, Pacific Meso Center officially opened their new research laboratory whose sole focus will be on the development of innovative therapies and treatment for malignant pleural mesothelioma (MPM). This lab is the first free-standing laboratory in the world dedicated to the study of MPM.

The PMC research lab team is headed by surgical oncologist and cardiothoracic surgeon Robert B. Cameron, M.D., one of the foremost experts in the field of mesothelioma research and treatment. Dr. Cameron is also the director of the UCLA Comprehensive Mesothelioma Program at the David Geffen School of Medicine at UCLA, Chief of Thoracic Surgery at the West Los Angeles VA Medical Center, and a long-time proponent of lung-sparing surgery for MPM.

In addition to Dr. Cameron, the team at PMC is comprised of a remarkable group of distinguished physicians and scientists all bringing forth years of experience in their respective fields to the lab.

Research scientist Raymond Wong, Ph.D. has a background in molecular microbiology and immunology and has spent the past decade in the research and development of novel immunotherapy strategies to improve the medical outcome of life-threatening diseases. Dr. Wong is currently researching the role of immunotherapy in the possibility of therapeutic cancer vaccines for mesothelioma. If a predictive model for drug prevention of MPM were found, someday we may be able to vaccinate pre-disposed individuals.

Research scientist Raymond Wong, Ph.D. 

Dr. Wong is also researching novel uses for cryotherapy which in the past has typically been used to address any new tumor recurrences after a patient has undergone surgery. Dr. Wong’s objective is to investigate the possibility of using liquid nitrogen to freeze any remaining tumor cells while the patient is still on the operating table. While surgeons may attempt to remove all visible tumor, the reality is that there is always microscopic cancer cells which remain and can potentially grow again. This tactic could potentially serve a similar role to post-surgical radiation and be an added assurance against tumor spread.

Molecular biologist Irina Ianculescu, Ph.D. has a background in genetic, molecular and cellular biology and is applying molecular biology techniques to the understanding and treatment of mesothelioma.Recent discoveries of the disease-specific genetic mutations in MPM offer the potential for individual targeted therapies that could lead to improved treatment and the possibility of turning mesothelioma into a chronic rather than fatal disease. Further advances in our understanding of the molecular biology of MPM are likely to emerge in the near future as genetic study becomes more commonplace.

Dongmei  Hou, M.D., Ph.D. whose current research is focused on hyperthermia therapy, chemotherapy, and immunotherapy has conducted a study using established cell lines and the response of thermal therapy and cisplatin. The results have shown promising results and will soon be ready for clinical trials.

Researchers at PMC are also working to find new options for pre-detection and early diagnosis, one such method under development is a non-invasive breath screening test that will be able to detect the pre-disposition to mesothelioma from the microscopic molecules carried in a person’s breath. Early detection not only offers a better response to treatment, but can add substantial value to quality of life and in many cases prolong survival.

In addition to the physicians and scientists, PMC is led by Executive Director Clare Cameron whose primary goals are to raise awareness and to create the financial success necessary to find better treatments and a cure for MPM. The newest addition to PMC is Medical Liaison Savannah Cline, RN, BSN who serves as a valuable resource to mesothelioma patients by giving them treatment information and a better understanding of the disease by providing a web-presence through her webinars, blogs, website content.

Pacific Meso Center (PMC) is a division of the Pacific Heart, Lung & Blood Institute (PHLBI), a 501(c)(3) non-profit medical research organization established in 2002, and is focused on both the treatment and prevention of MPM.

Click here for official press release of Pacific Meso Center.

The Visitor - A Tale for Valentines

I've often likened myself to an island.  I love people, and I love music.  Those two things quite suffice.

However, one of dearest friends in Liverpool said something that got me thinking way back when.  She said, "Sarah, you know, it's strange - I'd consider you one of my best friends, but I know very little about you."

She was right.  I know so many people and could chat the day away, but as excruciatingly social as I am, I am also intensely guarded.  I've always figured that I had a certain amount of transparency and that people could just inherently "know" me.  Well, they may, but I'm not the greatest at getting very close with people.

I'm even worse at using the word boyfriend.

I am a lover of humans.  I thrive on human interaction, and am happy to galavant about and join in whatever people just might get up to.  It is as though the entire world is my boyfriend.  

I had an odd thought lately, but I'm going to share it with you anyway.  You should expect this by now.  

When I'd started dating someone a bit back in the day in Liverpool, a friend of mine said, "Sarah - it's just strange.  And this isn't meant to sound horrible, but it's almost like you're asexual.  I just can't imagine anyone being attached to you."

I thought that was hilarious, and actually quite accurate!  As I said, it is as though the world is my boyfriend.  It's almost as though I have this silly sense of duty to the world to love everyone and be everything I can be for them, so to have someone, one person, who I call my boyfriend or even, maybe, you know, fall in LOVE with, would just be ludicrous and a huge disservice to all of the lovely humans.

I did tell you it was an odd thought.

But, here's the thing.

This island had a visitor.

The visit was far more brief than I'd have cared for it to be, but it happened.  Someone got to this island.  It was good.  It was fun.  He was lovely.  I wasn't expecting it, and I got more out of it than I could have possibly anticipated.  Even when it ended, it ended with a three hour, wonderful conversation that literally ended a phase of chaos and helped me learn a great deal about myself.  

I'm not an island, I suppose.  And letting someone get to me, while possibly a disservice to all the other humans in the world (oh gee, laugh out loud, etc.), turned out to be wonderful.  

A few things that I got from this:  

I know even more lovely humans.
I learned that it turns out, I'm a pretty good girlfriend.

I learned that I don't have to worry about being able to handle work, working out, dieting, a social life, plus having a companion along for the ride.  I can do it.

I was reminded how wonderfully we all deserve to be treated and can't wait for it to happen again someday.

I also got Mister Breakfast.  It just happened, and we had to elaborate...  See below.

I'm spending Valentines Day running around town in a red polka dot shirt my Mom got for me handing out silly Lego Star Wars & holographic kitten and puppy valentines with candy hearts in them to all of my favorite humans, and probably a few I don't even know.  And then I'm going to have dinner with one of my favorite ladies in the world.  And then I'm going to smile for a moment and look forward to when I have another island visitor to share it with someday.

I do have copious amounts of love for you all.  Have the happiest Valentines Day.

Is EPP Superior to Supportive Care in the Treatment of Malignant Pleural Mesothelioma?

As published in the Annals of Cardiothoracic Surgery February 2011 issue.

The question of whether extrapleural pneumonectomy (EPP) is superior to supportive care, in terms of morbidity, symptom control and survival, in the treatment of patients with malignant pleural mesothelioma (MPM) is examined by reviewing 14 papers best demonstrating the evidence to answer this question. After relevant outcomes and results were tabulated, this study concludes that EPP confers no advantage to chemotherapy and palliative treatment in terms of survival and symptom improvement.

According to the study, the median survival was 13 months, 5.7% perioperative mortality rate and 9.1% 30-day mortality rate. There was a high morbidity rate of 37% during surgery due to the following factors: atrial fibrillation, empyema and supraventricular arrhythmias. Disease recurred in 73% of patients at a median time of 10 months. Median hospital stay was 13 days and intensive care unit stay was 1.5 days. At three months post-surgery, improvement in symptoms was achieved in 68% of patients, with significant advantages observed in patients with epithelial MPM compared to non-epithelial MPM.

Management of MPM may include the use of chemotherapy or surgery with palliative intent. However when the EPP is used with curative intent, studies show that is likely to fall short of expectations. The clinical bottom line to this study is that EPP is a highly morbid operation with high perioperative mortality and recurrence rate. Although a number of retrospective studies have shown a small benefit in survival with EPP, there is consensual agreement that even in subgroups with the best prognostic indicators, such as epithelial histology or negative lymph node metastasis, EPP still results in high complication rates with minimal symptomatic improvement. 

The MARS trial, which clearly demonstrates the detrimental effects of conducting EPP surgery compared to conservative management, is especially significant. This study also reported that lung-sparing radical decoration surgery tends to produce higher median survival rates compared to palliative surgery.

Click here to view the full article. 

Feeling good feels good.

It's impossible to not feel slightly more good after listening
to this.  Walk down the street playing this in your earbuds
and tell me you don't smile.  Impossible!

It's funny how life has its ebbs and flows.  This is nothing new, but somehow it seems like an epiphany over and over again.  When you're in the thick of it, some part of you is very logical and aware that it will most certainly pass, but another part of you just can't see past it.  It's hard to remember how to get back to feeling good again.

Once I got the hang of tracking my food, eating healthier and exercising regularly, it got to be second nature. It seemed so easy.  It was the norm.  It wasn't a challenge.  It was my way of life.  It was all so simple and so good.  

I forgot how easy it can be for that to not be the norm.

After a summer and an autumn of struggle, things are finally getting back to normal.  Being the person of extremes that I am, I expected to just start back up and rule the world as I remembered doing before.  But, therein lies the problem!  I had to break my mindset of trying to get back to where was.

I

am

not

THERE anymore!  That was then.  This is now.  Move along.

A lot has changed since then.  But, things have settled down and I'm in a better place in every way now.  I love it when you finally feel something break, something give way, and you know that you're on the right path again.  Well, it's not even that you're on the correct path again - you're at a great pace and making some serious headway towards whatever intersection, bend, bridge or whatever might be on the way.

I met up with a friend last Sunday who is a dietitian.  The initial plan was to talk about food, get some good ideas for new ways of eating, and new things to eat.  It ended up being a great conversation about where I'm at in life in general and what I've got to do to progress.  

It was a healthy dose of divine intervention.  Even though the things we talked about are things I already knew, it sometimes takes the right person at the right time saying something they didn't even know they needed to that hits you, breaks you down, builds you up, and propels you all at once.

I keep forgetting that life is a process.  Things don't magically find a perfect groove forever.  You may have a good stretch, but you'll have rough ones, too.  And they will come and go, and then come and go again.  

I'm finally starting to get it.  

I don't have to do it all at once!  There are so many things I need to do, both at work, and for myself.  But I've been working on a few things at a time.  This week, my goal was to go grocery shopping and return to my regular eating and exercise habits, remembering that even if I only get a half hour of something in, it is better than nothing.  I've also tried starting my days with 10-15 minutes of some kind of exercise.  One morning, I did a 10 minute Pilates video.  Another morning, I did a bunch of core exercises.  I've overcome my urge to buy peanut butter, because if that's in my house, well - it's over.  

I've also done necessary but boring things like scheduling appointments with doctors and insurance agents, rethinking my spending habits and reworking my budget, getting organized, and figuring out a regular schedule of exercise.  I just might start going to bed earlier, too.  

You've heard me say this before, and I will say it over and over again.

It is amazing what happens when you make calculated, boring, conscious choices to simply do things.  

I'm learning that feeling good and being content is not as simple as "feeling" good.  Right now, I've got a lot to work on.  But feeling good is a choice, and it's choosing to make good decisions that will lead to a life of good, not a season of good.  

It's a new kind of goodness, but nonetheless, it feels good to feel good once again.

Expanding the Discussion about Your Freedoms

While it may seem obvious to those of us who live here and sometime take our freedoms for granted, what makes the United States of America such a great place to live is that the design of our government and legal system is based on the protection of freedoms.  The founding fathers recognized, because of their recent violent fight with a tyrannical government, that authority will always seek more authority over the governed.  Therefore, the only government that stood a chance of respecting the freedoms of individuals was one built first on principles that outlined those freedoms.

In the past, this blog has concentrated primarily on debt relief and bankruptcy.  While you might not necessarily associate that subject with other fundamental freedoms, bankruptcy is one of the oldest laws in the United States, and was included in the original 1787 draft of the U.S. Constitution. In fact, the originating language is older than the Bill of Rights. The Founding Fathers recognized that a system of laws was necessary to protect the “honest but unfortunate debtor”, and such laws were in the general interest of the country and its citizens.

While we will continue to cover bankruptcy news and provide information about options for obtaining financial freedom, we will also begin including posts on this blog specific to other freedoms provided for by our Constitution and Bill of Rights.  We hope that you continue to frequent our site for news about financial freedom, criminal defense rights and protections, and freedom from infringement on the individual right to bear firearms.  We also invite you to leave your thoughts and join the debate in the comments section of our posts.

Many people are proud to stand up for, and take advantage of, their constitutional protections – and they should be. From its original incarnation and its amendments over the years, such protections have become the cornerstone of our society, our government and our way of life.

The Rationale for Multimodality Therapy Incorporating Lung-Sparing Surgery

As published in the Annals ofCardiothoracic Surgery November 2012 issue.

Although historically, extrapleural pneumonectomy (EPP) was the preferred surgical approach to the management of malignant pleural mesothelioma (MPM), physician and patient preferences have contributed to an increased number of lung-sparing pleurectomy/decortication (P/D) surgeries now being performed. Given the growing body of research and when patients face the option of a less extensive surgery that is equally or more effective than the EPP, has caused this dramatic impact in thoracic surgeon practice patterns.

The P/D involves resection of the pleura but leaves the uninvolved lung intact. It is already associated with less morbidity during surgery and increased life-expectancy. The EPP has been well studied in the multimodality paradigm and has shown that many patients are unable to tolerate post-operative radiation and/or chemotherapy. Given these challenges, many investigators are exploring how best to incorporate P/D into a multimodality treatment program. 

This study examined the value of EPP versus P/D in a retrospective analysis of 667 patients. Early data suggests that since adjuvant therapy is more tolerable in P/D patients, multimodality therapy with P/D is associated with improved survival. Treating MPM patients with intact lungs with pleural intensity modulated radiation (IMRT) is feasible and safe and is associated with encouraging survival rates in this retrospective cohort. 

In conclusion, MPM patients clearly benefit from a multimodality approach, but the optimal combination of surgery, chemo and radiation merits more investigation. As more patients undergo P/D surgery instead, the EPP-centric multimodality paradigm is shifting to integrate this trend. Researchers are also currently evaluating a novel paradigm of preoperative chemo followed by P/D and pleural IMRT in a prospective phase II trial.

Click here to view the full article.