I was speaking with a friend of mine recently about writing, as she's writing a urban fantasy short story, and the subject of blood types came up. You see, I always remember my blood type, B Positive, because that’s how I always strive to be. Unfortunately, sometimes I fall short of my goal. Today is one of those times.

I was really happy when on March 5th, 2012 the United States Senate passed a resolution (S-389) recognizing the first week of April as Asbestos Awareness Week. Sponsored by Senator Max Baucus of (D-MT), I was finally thinking that the United States was getting on board with knowing the facts about the dangers of asbestos exposure and more awareness about the diseases caused by it, specifically mesothelioma and asbestosis.

Imagine my utter dismay when I recently found out there is another act moving through our government that is called the “Furthering Asbestos Claims Transparency Act” or FACT Act. However, the so-called transparency ONLY pertains to the victims, not the companies responsible for putting this horrible substance out there in the first place.

What Transparency?

Why does this make me angry? Right now, Congress is being lobbied by corporations to allow them to delay the court process for asbestos victims. In delaying that process, responsible companies are less likely to have to pay anything out. Plus, THEY don’t have to be transparent about anything more than they have been. It protects the companies, while harming the victims.

This Act allows companies to ask for personal information about the victim. Companies are not held to the same standard, and don’t have to give any information. It also allows defendants to have insight into other claims so they can accuse the victim of double dipping between companies’ asbestos trusts and solvent companies. This Act is very one sided, as it protects big business asbestos companies and trusts, but not the people who have been exposed to asbestos and are now sick.

Here is the kicker-- the FACT act wants to have more proof of exposure, with most victims given between a year and 8 months to live, this burden lengthens the court proceedings and diminishes the amount of claims paid out before death. Asbestos victims will have to be far too transparent with the corporations-- they will be able to ask for greater personal information, work history, exposure, and prior claim history. These corporations who have fought so hard to be identified as people and individuals with the rights of personhood are now fighting to escape the responsibilities that personhood requires. In other words, they don't want to pay the price for harming their fellow citizens.

This is Just Wrong

After everything I have been through, after all the people I have met who are now ill because of the negligence of these corporations, after my friend was just put back into the ICU because she has more CO2 in her lungs than oxygen-- these companies want our personal information and proof of exposure.

I was 36 when I was diagnosed. 36. With a 20-30 year latency period, that puts me between 6 and 16 when I was exposed. I never had a job working with asbestos, my cancer came as second hand exposure. This, sadly, is a case more often than not.

Because of asbestos, I lost not only my career, which I loved and nurtured for 15 years, I lost the entire first year of my baby’s life. She was just 3 1/2 months old when I was diagnosed. I missed her whole 6th month of life while I had my lung removed. I missed many more milestones because I was sick from the chemo and radiation. Her whole first year of life is a blur through a chemo haze and I have asbestos to thank for this.

I can no longer work at a job that I loved because of nerve damage to my left hand from my extrapleural pneumonectomy surgery. I can’t stand behind a chair for 8 hours a day doing hair, like I used to because of my diminished lung capacity and the chemicals from all the products are not the best for me to be breathing in.

When I realized what I was up against, yes, I called a mesothelioma lawyer, and it was one of the smartest things I did besides seeking out the best doctor. A legal battle is not to be taken lightly, you want the best and I hired the best. I got sick because of the greed of large companies, and I was not going to sit back idle and let nothing happen. I lost over $4 million in earned income by getting sick so young. This comes from an independent company that figures out lost income due to illness. Yes, 4 million dollars. I can never regain that money. No lawsuit will ever amount to that.

I cannot sit here and 'B Positive' just to watch companies get away with shirking their responsibilities to people who were just going to work and doing their job, or just hugging their dad after a long day at work.

Why is it that we in America will allow our corporations to skate but other countries, such as Italy, will actually hold them accountable for their actions? I recently attended a screening of the movie “DUST The Great Asbestos Trial”, an Italian documentary made because the citizens of the city of Casale, Italy who worked and lived around an asbestos cement factory were all getting sick and dying. They sued the shareholders of the company, Eternit, and the Italian court found them GUILTY of manslaughter, sentenced them to 17 years in prison and $1,000,000 in fines. Sadly, the decision is being appealed, but hopefully it will be upheld.

Let's All 'B Positive'

So, today you are getting a blog post that is not my normal style. Today you are getting the anger I feel when I see corporations buying votes in Congress and leaving those of us who have been harmed to rot by the wayside.

But then again, you’re also getting something else. You’re getting a call to action. I don't often ask you to stand up and fight, but today I am. Those of us who are fighting this horrific cancer need your help to stand up to the corporations who refuse to be held accountable.

Today, I am asking you to call, write, email, tweet and comment to your elected representatives. Tell them how you feel about the FACT Act. Go to Asbestos Cancer Victims' Rights Campaign and sign the petition to STOP the FACT Act.

You see, if corporations are going to insist on being people during election season, then they need to be held accountable for the deaths of every single one of us who contracts this horrific cancer and does not survive. They need to be held accountable for the pain and suffering all of us with this cancer feel on a daily basis. They need to be held accountable for the loss of jobs, the scarring, the fear, and the medical bills. They need to be held accountable for ALL OF IT. My wish is that these companies could witness the fear, the helplessness, and the pain of an asbestos victim and follow their journey from diagnosis, through the end. Maybe, just maybe, they will understand. I’ve lost far more friends to mesothelioma than I care to admit and it never gets easier. It gets harder and harder the more I know.

So please, if you stand up with me, I think I can move away from my anger and go back to living up to my blood type and once again 'B positive.'

Cameron

This is the third time I have attended ADAO’s Annual International Asbestos Awareness Conference. I still remember how I instantly felt like family when I attended my first conference in Atlanta, GA in April 2011. I found myself at home with others whose lives had been affected by mesothelioma and asbestos. It was wonderful sharing my experiences with others and hearing their stories as well.

This year the conference was held in Washington D.C. The theme was “The Asbestos Crisis: New Trends in Prevention and Treatment”. There were sessions on medical advancements, patients and caregivers, and prevention and advocacy. But for me, the conference is about so much more. Yes, I love to learn about new medical advances in the treatment of mesothelioma. It gives hope for all those who have been or will be diagnosed with mesothelioma. For me, the conference is about connections and people.

I love spending time sharing stories with others and making new friends. My wife has referred to this and other similar conferences as “cancer camp.” This is not intended as an insult, but a compliment. A way to say these are as exciting as going off to summer camp as a kid and getting to do all those cool fun things, but it’s for adults and centered around mesothelioma and asbestos. And the friends you make become friends for life!

This year, there were attendees from seven different nations. I found opportunities to connect with kindred spirits from across the globe. People who have had similar experiences and could relate to what my wife and I have been through since her mesothelioma diagnosis in 2005. I can see now why my wife calls it “cancer camp”.

Heather

Where else can you sit in a room and have 7 countries represented and all be working for the same cause: asbestos awareness, education and disease prevention?

ADAO was started by Linda Reinstein and Doug Larkin after their lives were altered due to this deadly fiber. Since then, Linda and Doug have led the tireless effort to ban asbestos and, through her work, she has gained a truly global reputation as a warrior for us, the people affected by asbestos.

The conference was a gathering of industry experts, medical experts, Union members, government workers, and people whose lives have been touched by asbestos disease in one way or another.

We heard about the outrage of the countries still producing and using asbestos and the shameful fact that our country is still legally importing 100 million tons of asbestos yearly. The more I learn about asbestos and where its being used with little or no regulation, the more my stomach turns. The ADAO is a leading voice in this cause and has supporters from all over the world joining them-- Italy, France, U.K., and Australia, just to name a few.

With its worldwide outreach, the annual ADAO conference attracts people from the mesothelioma community and recognizes their efforts in awareness and education. My favorite part about the conference is meeting the warriors. Last year, I was lucky enough to meet Debbie Brewer from England. This year, I had the extreme pleasure of meeting Lou Williams from Australia. This was such a bonus and such an amazing experience; I’m still on cloud nine. Karen Banton and the entire crew from Australia and the Bernie Banton Foundation was on hand to receive the Tribute of Inspiration award for Karen’s untiring efforts to protect workers rights and seek justice for asbestos workers and their families. My heart is so full of love and admiration for these people and their mission. It strengthens my resolve to continue my work here in the U.S. to bring about awareness.

Linda had contacted me a few months ago and asked me if I would share a little about my awareness efforts. I, along with my friend Jill Cagle, who lost her husband Robbie to meso in 2011, told of our fundraising efforts and how our lives have been forever changed because of asbestos. I shared this blog, our Lungleavin Day celebration, and all of the outreach we are doing. It was wonderful to be able to present to Linda and Doug our check for $3000, money that was raised through our Lungleavin Day celebration, and through the generous donations of our friends and family.

At the conference, reconnecting with friendships made in years past and forging new relationships are the things that I always hold dear. I’m so thankful for places like Facebook and the groups on there where these friendships can continue, no matter the miles or oceans between us. I consider myself so blessed to know so many mesothelioma warriors from all over the world working toward a common goal.

The chance meeting 4 years ago with this powerhouse woman named Linda Reinstein is what gave me the courage to speak up and gave me my voice. She inspires me with her passion, her loyalty and her love of this community, and I am proud to be part of the ADAO.

Thank you Linda, for letting so many of us share our story and for giving a voice to the asbestos victims worldwide.

Cameron

Four years ago, Heather went to her first Mesothelioma Applied Research Foundation (Meso Foundation) symposium. That first symposium left a lasting impression and changed her life. The opportunity to meet with other mesothelioma warriors, their families, caregivers, and medical experts in mesothelioma treatment and research had a positive impact. It was the opportunity to meet with people who know what a mesothelioma diagnosis means. These new friends quickly became family.

Heather refers to the annual Meso Foundation symposium as summer camp for mesothelioma warriors. One of her favorite sayings is mesothelioma is a crappy way to meet some really great people. I had attended other mesothelioma symposiums and knew the saying to be true; so, last year, after Heather came back from the annual Meso Foundation symposium all fired up, I knew I had to go. I was not disappointed.

I met many of the friends Heather had made at previous Meso Foundation symposiums. She has told me so much about them that it felt like I was meeting old friends, not a first introduction. It is a wonderful experience being surrounded by people who have an intimate understanding of what you are, or have had to deal with a mesothelioma diagnosis; it was therapeutic even.

Besides the opportunity to talk with others who are dealing with a diagnosis and the inspiration by those conquering the disease, highlights of the symposium for me included a caregivers only discussion panel that reaffirmed my beliefs and experiences in dealing with Heather’s mesothelioma diagnosis. There were also sessions covering current medical research, genetic studies and new clinical trails. Other sessions covered topics ranging from new patient information, a legal advice panel, conversations with Meso Foundation community members, and fundraising. It was an incredible experience.

Heather

This was my 4th time attending the symposium put on by the Mesothelioma Applied research foundation. As I look back over the last few years, I see how my role has changed and how I’ve changed, as well as how my thoughts of being a mesothelioma survivor have changed.

During my first symposium, I was very much a newbie and didn’t know what to expect. I felt a little nervous and out of the loop. I was new to this organization and what they did, so everything and everyone was new. The next year, I was more brave and, with one more year of survival under my belt, more confident. I started nurturing friendships that would grow over the next year.

My relationship with people who work at the Meso Foundation also began to grow. I knew without a doubt that I had a voice and a place. I was there to learn, to inspire and to help others who were in my shoes. My 3rd symposium, things really seemed to come together. I once again attended on my own, but was far from alone. I had made many new friendships through Facebook, had gotten to know Mary Hesdorffer from the Foundation so much better. With my blog, I have gotten my story of hope out to many, many more people than I ever dreamed of. It was at this 3rd symposium that Dr. David Sugarbaker received an award for Pioneer of the Year and I was so proud to be there for him, along with many of his other patients to cheer for him as he was given his award. The relationships that I had started in those previous years were cemented and I no longer felt like an outsider. I made it my mission to seek people out and smile, say hi, and make them feel welcome. I had changed from someone who attended to someone who was very much part of the community of what the Foundation is.

This year, I was beyond excited to attend. The main reason was because Cameron was coming with me. He would finally get to experience what I had for the last few years and meet the people I had told him about so many times. Plus, it was being held in Las Vegas! How could this be a bad thing? I was asked to be on a panel about the community. The panel consisted of 3 survivors, 2 of our spouses, and one woman who lost her husband just mere months before. It was such an honor to sit on that stage with those people and represent what the Meso Foundation is, and what it does for people like me.

A mesothelioma diagnosis is terribly frightening and isolating. Not much is known and a lot of what is out there isn’t great-- until you find a community; people who know what you are going through, who are fighting with you, and who are cheering you on. The Meso Foundation does this and so much more. Their commitment to bettering research and themselves is evident in everything they do, and stand for. The Board of Directors, and people who work there have the biggest hearts of anyone I know, all have been touched by meso in some way, either directly, or indirectly. Year after year, their dedication to the community is evident. I’m very proud to be a part of it, and will continue to put my support behind their mission.

You will find me in Washington DC, next year, for the 11th annual symposium, I’ll be on Capital Hill, asking for funding for this disease. I’ll be in attendance at the symposium to inspire others, mentor others, rekindle old friendships and nurture new ones. Not just that, but BE inspired by the many brave warriors, and BE mentored by those who have been where I am. I will continue to give back, just as much as I have been given.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11

This scripture was on a card sent to me by a friend shortly after he found out I had cancer. When I opened the card, and read those words, I sobbed. I sobbed because it was EXACTLY what I needed to read and needed to know, that I would be ok. It was those words that got me through some very scary times in these last 7 years. Those words were, and still are, my lifeline.

Growing Up With God

I was raised in a Christian home, so God and Jesus have always been a part of my life. Growing up, I went through Sunday school, all the way through into high school. I was in youth group, church camp, and everything I could be involved in with church. It was the foundation for me. During my preteen and early teen years, the time spent at youth groups, church retreats and camps really solidified my relationship with God.

This relationship came and went over the next few years of my life; I got interested in other things as I got older (boys!) and graduated, moved out, and struck out on my own. I was living my life! I didn’t need or have time for church—I was too busy having a good time. But deep down, I always knew God was with me. I prayed to him sporadically, when I needed his “help” or said a quick “Thank you God” prayer when something good happened. No matter what, I always knew He was around.

Fast-forward 20 years—I was pregnant with my first and only baby, and the urge to find a church for a foundation for my baby to grow up with was so strong. I asked all my clients what church they went to and why. I wanted to find the “right” one for my new family and I did. I had a client who would later become the friend who sent me the card with the bible verse, who told me about this wonderful church that fit my laundry list of requirements. Church being close to home was a big one and I was happy to check this church out. I was also happy to learn that he was the music director there. I started attending when I was pregnant and really liked it; now I call that church my own. It has been a haven for me, a safe place in a turbulent storm, a place of prayer, of wonderful friendships, and great people. Things have a way of working out; I say it was God working in my life because He knew I would need that church with what was going to happen in my life.

"This is not unto death"

It was just a few short months later that I was diagnosed. I believe God was with me through the whole nightmare of diagnosis. It took a few weeks of knowing something was seriously wrong, until November 21st, 2005, just 3 1/2 months after Lily was born, when we got the news I had malignant pleural mesothelioma. To say it was a shock is an understatement. I immediately started to pray, even more than before. I asked God to just put us where we needed to be. During my mom’s prayers heard God say to her plain as day, “This is not unto death”. Those words were HER life raft. She and I would pray them together and still proclaim it. My parents were praying with the pastor of the church I attended in my later teen years, and my pastor told my Dad, “Don’t worry about Heather, she is a Lighthouse. She will be a beacon of light for those in danger of crashing on the rocks.” Because of those words, I have a huge picture of a lighthouse in the middle of turbulent sea displayed in my home to remind me of my purpose.

I am a Lighthouse

I have found that a cancer diagnosis will do one of two things to a person. A diagnosis will either turn someone away from God and cause the person to be angry, as in why would God do this to me? Or it will make you run to Him and seek comfort in His presence. That is what it did for me. My faith was strengthened throughout my journey, and it continues to grow, as I do, as my journey progresses. That scripture from Jeremiah 29:11 still brings me great comfort, and I read it almost daily. Does it mean that I float through life without a care or concern? No. I am, after all, human. I have my emotions, my doubts, my anxiety and my anger, but my walk with God helps keep it all in perspective. The one thing never changes. I know He loves me and he wants what is best for me. God never promised us a life of perfect harmony. I have never asked “Why me, God?” Instead I’ve asked, “Why NOT me, God? Use me, use my story, and if it brings hope to one person, I’ve done You proud!”

That is why, to this day, I share my story of hope and of my faith. My faith has been the thing that gets me through. All I have to do is think of all the amazing things that have transpired and all the incredible people I’ve met through my journey. I thank God each and every day for all I have. Do I know how long I’ll be around? No, none of us do. But while I’m here, I want to be what God has put me here to do and that is to be a beacon of hope. I am, after all, a lighthouse.

The 7th Annual Lungleavin Day is all but a memory now. The remnants of a great night are all around; the shards of plates around the cold coals of the extinguished fire, the ice lanterns are nothing more than globes of ice, the dining room table still has the serving dishes used for the night sitting on it, all cleaned and waiting to be put in the storage bin until next year. The silent auction donations are still in their places and phone calls have been made to all the winners. This week will be spent delivering them and picking up the donations so generously made for mesothelioma research. What can't be seen is the gratitude that my husband, daughter and I have in our hearts for all of the love and support that so many have given us.

There were many things that went into making this year’s celebration special. There was the help from my very talented designer friends in making signs and setting up the auction. We also had some very special guests, Mary Hesdorffer, Director of the Mesothelioma Applied Research Foundation, who flew all the way from the East coast to be here with us and celebrate, and 2 other mesothelioma patients. One is newly diagnosed and facing surgery in less than a month. Another is a 4-year peritoneal mesothelioma patient who is currently battling a reoccurrence, but is doing well. He is a musician and toward the end of the night he sang and played his mandolin—it was the perfect addition to our celebration. There was one sad note, the passing of a dear friend earlier in the week that made my heart ache. Her funeral was the same day and, although I could not be there, I dedicated the night in honor of Pam, my dear, fierce warrior friend. She would have loved knowing the night was in honor of her and perhaps she did.

My husband spent days getting the back yard, where the bonfire is, ready for the smashing of the plates. It looked like a winter wonderland with blue lights surrounding the area and the ice globe lanterns we made sitting around glowing softly. It was almost magical.

People started showing up before 6:00 and the house quickly filled with laughter and the clinking of glasses. A full on party was happening! At one point, I just paused and looked around, if I never had cancer, this would not be happening. This is where the saying of a double-edged sword comes in. It was horrible going through all we went through, the first year was hell and there have been ups and downs along the way. But looking around my packed house, hearing kids laughter from upstairs where all the kiddos where playing, and seeing all the love and support makes it all part of who my husband and I are today. It's ok! Better than ok!

I have a purpose in my life now, a mission. And if I take this tragedy and turn it around to make something good? Then it was all worth it. Lungleavin Day is more than just an anniversary of getting my lung removed, it signifies HOPE, rebirth, moving forward, and conquering those fears that can impede you from achieving what you are meant to do. The night has become a night to be treasured among my circle of friends and family; a night of true celebration and a night of LIFE.

More importantly, we were able to raise a good amount of money for mesothelioma research and awareness education. This is my second year using the event as a fundraiser and I am totally in awe of the generosity of people and businesses who are willing to donate their goods and services to help my cause. We had over 30 items for the silent auction, everything from gift cards to photography sessions to tickets to a local comedy club. Amazing the variety of things and something for everyone. Every single item was bid on, so I call that a success. As of the end of the party, over $4500 had been raised. I sat there at the end of the night and tears of gratitude fan down my cheeks as the money was being counted. In this disease, every bit of money raised is a huge help, so I'm proud to do what I can and it couldn't be done without the support of all of our loved ones.

Each year, as soon as it’s over, we start talking about how to make next year better—and the next, and the next. Even planning the 10th! I hope you all come along with me on this journey.

Like I always say, “Life is a banquet, and most poor suckers are starving to death.” You've got to live! And I've got some living to do!

Happy Lungleavin Day to you all!

“Courage is resistance to fear, mastery of fear, not absence of fear.”
-Mark Twain

I hear it often from people, how brave I am and how much courage I have. Sometimes I just have to laugh, because, going through what I’ve been through with my mesothelioma battle, I don’t feel very brave. At times, the fear was so overwhelming, all I could do was cry out to God to help me. I would love to say that through the last 7 years, I’ve learned to conquer my fears. After all, Lungleavin Day, our celebration of the anniversary of my extrapleural pneumonectomy surgery, is all about overcoming fears. But I still have my moments, more often than I would like to admit. I have the usual fears creep in, my “scanxiety” I’ve blogged about before, little pangs of fear before I fly, but the biggest fear I struggle with is the fear of something happening to my daughter. This is something that has plagued me since she was born.

I’ve always had what I jokingly call puke-aphobia and, with having a kid, you know it something you have to deal with. This year has been particularly brutal on the gastroenteritis front for my poor Lily. Three times she has been sick this year in as many months. When she got sick the third time, the fear reared its ugly head in a big bad way. So much that I took her to the doctor and insisted he do a battery of tests to rule out anything. The thing I was most afraid of? Yep, cancer. Having dealt with cancer myself, and knowing so many others, my hypochondriac mind went right to the worst-case scenario. My husband, bless his heart, is always able to bring me back around to reasonable thinking. Although he understands why I go to the worst-case scenario, he doesn’t indulge it, and his voice of sound reason helps so much to calm me. Except in this case. I could not shake the feeling that something was seriously wrong. Turns out he was right. She is a perfectly healthy 7-year-old little girl. Every single test came back as normal as normal as could be and, for some reason, she has just gotten sick a lot this year.

The fear is crippling. The anxiety it causes makes my life miserable and those around me even more so. It is something that I have vowed to work on this year to not let the fear get out of control. Someone told me once that the word “FEAR” is an acronym for “False Evidence Appearing Real”, and when you think about it? It is TRUE!! The fear is almost always worse than what I’ve imagined and blown out of proportion in my mind. I did something this time that was not easy for me to do. I asked for help from people who I trust and admire, and their guidance and prayer really helped me overcome this obstacle. They gave me some tools to use to stop the cycle and basically send that fear packing. Frankly, God is the one who gives me tremendous peace. I find that prayer and reading His word, writing scriptures that speak to me, and keeping them in a little notebook for my use is a way for me to keep grounded.

With Lungleavin Day coming up, the opportunity is here to write our fears on a plate and smash them into the fire, I’m going to once again take control of my emotions and overcome. I know I have the power to do it; sometimes it is just making the choice to do so.

I hope you too will do something on February 2nd to overcome your fears in the spirit of Lungleavin Day. If breaking a plate is over the top, I find that a paper plate works great, and burning it, or tearing it into hundreds of pieces. If you struggle with fear, no matter what it is, taking control, finding the root of it, and addressing it helps takes it away. I also find humor is a great way to conquer fear, hence “LUNGLEAVIN DAY” It was born out of the desire to make something funny out of something tragic. It is the day my lung left my body.

For this, my 7th Annual Lungleavin Day, I’m conquering fear by surrounding myself with amazing people and sharing our night with anyone who wants to join in. I hope you can join us. Go to my Facebook fan page to join the Lungleavin Day Event and we will be live webcasting on the night of February 2nd, 2013 6:00 pm to whenever the last plate is broken (Central time).

I hope you, too, find something healing about the day just like we do. Together, we will make 2013 fabulous.

I love social media! Through Facebook, Twitter, and Instagram, I've been able to communicate with literally hundreds of people throughout the world. I especially love it during the holidays, because it gives me a glimpse into the traditions and lives of my new friends. Traditions are the rituals we all do year after year and carry on generation after generation without question. We just do them "because it's always been this way".

When Cams and I got married, we decided to start our own traditions. I think every married couple does this because you need to make something your own. Those early years, we didn't really do much outside of go for a drive to look at lights and have crab legs for Christmas Dinner. We always celebrated Christmas Day with just the 2 of us. We often talked of the days to come when we would have kids about how we would handle the holidays and what traditions we would start.

When I was diagnosed with mesothelioma just after Lily was born, we didn't have the time or energy to start any new traditions that year. We just numbly plodded through the holiday. We did our best to try and make it special for Lily's first Christmas, but we could not ignore the shadow of mesothelioma looming over us. I still feel a little melancholy every year when I put her “Babies First Christmas” ornament on our tree.

Through the next few months following surgery and treatments, the holidays were upon us again. I was finished in all my treatments and we decided to celebrate Christmas in a big way that year. We had MUCH to be thankful for. We started a new tradition of my parents coming out to our home for the holiday, instead of us going to my childhood home. They know the importance of starting one’s own traditions and they wanted to continue to be a part of Lily's life. That year, my mom and I baked tons of my favorite cookies and Lily was old enough to (sort of) help. We still do this every year when she arrives.

We also started a tradition called “Elf on the Shelf”. It is a little elf that Santa sends to the house to be his special helper. He keeps an eye on Lily and reports back to Santa at the North Pole every night. When he returns the next day, he is in a new spot. It didn’t take Lily long to catch on that the elf “moved” around every day. She would jump out of bed every morning in December to go find Filbert, as this was what we named him. Last year, Filbert was lost so a new elf came to “watch”. His name is Filmore, Filberts brother. Filbert was found half way through December and arrived with a note from Santa. Now Lily has 2 elves that get into mischief daily. We’ve had great fun with those elves this year and so did the many friends on Facebook whom we shared the pictures with! We didn’t even really mean for it to take off like it did, but Lily love seeing what crazy things they did every day. And now, it is probably our favorite part of the Christmas festivities.

We spend Christmas Eve with my husband’s family and Christmas Day is for my parents, Lily, Cams, and me. It is perfect. My dad, being the amazing cook he is, made us a prime rib dinner that first year and that tradition we carry on still. The meal he cooked this Christmas has been the best yet!

In our family, we've started another yearly tradition; it has nothing to do with Christmas, but everything to do with my cancer diagnosis. I had my surgery to remove my left lung on Feb 2nd, 2006, that day has been forever named "Lungleavin Day" in our world. Our tradition started in 2007, Cams and I built a small fire in the back yard and had a small Lungleavin Day celebration. We bundled up against the -4 degree temperature, wrote our fears on a plate, and proceeded to smash those fears into the fire. We have celebrated in much the same manner since that first one, except we have turned it into a huge celebration shared by many more people. It's the tradition around it that gives it meaning. Much like prime rib is our traditional Christmas meal, we have a traditional "food" for Lungleavin Day-- sloppy Joes, and gourmet cupcakes! People have come to know that is what is served, along with a lot of other food, but always sloppy Joes and gourmet cupcakes at the center. It is something we continue to do, year after year. This year will mark 7 years since my surgery and we are planning another big celebration with friends and family from all over.

Cameron and I have brought together traditions from his childhood, my childhood, and have made our own. I'm sure over the next many years, we will continue to add new ones or strengthen the ones we already observe.

I hope your holiday, no matter what you celebrate, is filled with rich traditions and you make up new ones to pass along, just as we have done. May 2013 be filled with blessings and thank you all for being part of my new life!

Scanxiety: Noun [skan-zi-etee]: Uneasiness waiting for ones scans after cancer treatment. ie: I get Scanxiety the week or so before I go to Boston for my check ups.

All kidding aside, it's that time of year again-- my biannual trek to Boston to have my checkup with the good Dr. David Sugarbaker and his amazing team. I always get nervous, ALWAYS! Although, as more and more time goes on, the less the scanxiety affects me. Now, instead of the whole month, it usually hits a week or so before the appointment.

This time last year my scanxiety was the worst it had ever been. I was feeling physically very turned, short of breath, and I had started running a fever the week before I was to go to Boston. I immediately called my local oncologist. He said it was best to keep the Boston appointment and that he would follow up when I got home. In the meantime, my symptoms sounded like the flu or pneumonia, so my doctor prescribed antibiotics. I started taking them and I felt well enough to get on the plane for Boston.

When I got there, I immediately went to bed. I had noticed I was short of breath walking through the airport and through the hotel. I convinced myself that my mesothelioma cancer was back. I prayed a lot that night and prayed hard. I got up early the next morning for my CT scan and my scanxiety level was the highest it had ever been.

When I laid on the bed for my scan and the machine kicked on, I prayed, "please no cancer, please no cancer, please." Before I knew it, I was done and off to my appointment at the office. When I finally got in the exam room, the Fellow came in to see me. He could tell I was anxious. He asked how I was and I bluntly told him I felt like shit. When he told me there was no cancer anywhere, I just started to cry. I was so relieved. All the tension and worry started running out of me in the form of tears. So I asked, “Why do I feel so awful?” He called Dr. Sugarbaker in. When he looked at the scan, he told me that I had pneumonia and was putting me in a room on the 11th floor.

I was so relieved that the cancer wasn't back that I didn't realize the seriousness of pneumonia with one lung. I spent the next few days in the hospital in Boston getting mega doses of antibiotics and x rays. It had been 6 years since I had been a patient up there, but I still knew the doctors and nurses. I was even able to talk with a gentleman who was scheduled the next morning to have the same surgery I had. I guess once a patient advocate, always a patient advocate, even when I'm the patient!

I had another scan at home a few weeks later to make sure the pneumonia was gone and again 6 months after that back in Boston. So here I am again—October and getting ready to go back. It's been almost 7 years since my initial diagnosis. Every time I go to Boston, I make sure to meet with other newly diagnosed patients. I speak at the new patient orientation; I meet with patients in the hallways and in the office. Friendships are made, information is exchanged, and I keep in touch with a lot of them. On this trip I get to meet personally with 3 people whose lives have been affected. It gets me out of my head, my mind off of me and on what matters-- giving people hope.

So I have a little scanxiety. A prayer and good vibes sent my way always help put my mind at ease and knowing so many of you are out there thinking of me gives me more peace than you can know. So as I head to Boston, I feel your energy and I humbly thank you for it. And as soon as I know my results, I'll let you all know. But, I’m pretty sure it's all good.

I've said it before, my mesothelioma cancer was all at once the worst thing and best thing that has ever happened to me. Getting the diagnoses when my baby was only 3 1/2 months old was certainly not in our plans. I planned on being a working mom, but this cancer changed all that. I get to be a stay at home mom, I get volunteer with my daughter’s school and help out when I can. I actually enjoy it far more than I thought I would. When I worked in the salon, I used to joke that they would have to pry the shears out of my cold, dead hand before I ever quit, but I guess someone had other plans for me. Some days I do miss going to work, but all I have to do is sit and read some of the comments on my blog or Facebook page to know that I am doing the right thing-- I'm making a real difference in people's lives.

The other thing that would have never happened without my mesothelioma diagnosis is I would have never met all the amazing people that have come into my life. I have lost many and that pain never quite heals, but their loved ones carry on their memory and they support me in what I do. The mesothelioma community is small and we are fiercely devoted to one another. We all can identify with one another having gone through a lot of the same things-- the surgeries, the chemo, the radiation. The feeling of isolation, then finding places like this web page, the Mesothelioma foundation, and ADAO—then, all of the sudden, we are a community! Without having had this cancer, I would not know many of the people who tirelessly fight to raise awareness and money for a disease that is vastly under-funded. We are a community of such passionate people-- strong and driven-- not only in the medical field, but just the every day caregivers who have lost a loved one to mesothelioma.

Last week, I was asked to speak at a dinner for the Jeff Crist Memorial Golf Outing, put on by the children of Jeff and Edith Crist. Mckayla, Micah, and Matthew along with their mother, arrange this incredible golf outing. Over 100 golfers were out on the course. The whole community came together to support the family and their loved ones, so to be asked to speak was an honor. Most of the attendees have never met someone who survived mesothelioma. It was truly an experience I will not soon forget, and it encourages me to keep raising awareness. See, without the cancer, I would not know Edith and her wonderful family who treated me like one of their own last week. I would not know my friends from literally all over the world, had I not gotten sick.

Mesothelioma is not just a problem in the U.S., it’s a global concern. The continued misuse of asbestos in countries such as India, China, and other 3rd world countries with no regulations, is only setting them up for future epidemics of the disease. With places like Canada continuing to export asbestos and the United States still not banning it, mesothelioma cases are only going to keep growing. Awareness is key! It all starts with simple awareness and so this why I will continue to do my part.

Mesothelioma Awareness Day is Wednesday September 26th. Please help us spread the word! Be part of the Mesothelioma Cancer Alliance "Lend Your Hand" campaign! And watch the Today Show September 26th and September 28th for a group of us in the plaza. Better yet, come join us if you are in the NYC area! You can find more info at Mesothelioma Applied Research Foundation's site.

Thank you, first for reading my blog and second for the unending support-- I really do love this community and am proud to be a part of it.

Lily started 2nd grade this year-- 2nd grade! She’s a bright and vibrant 7 year old with a stubborn streak a mile long, and sweetness that will melt even the most bitter of hearts. I love going to ‘meet the teacher’ night and seeing how excited she gets when she walks through those doors at school. So confident and filled with hope and wonder-- she loves her school.

I remember when she started kindergarten; it wasn’t quite as easy then. She was nervous, but still excited. I was so happy to see her meet her new kindergarten teacher, find her cubby, and put her school supplies away. I walked with her to the play area where Mrs. T was taking pictures of all the kiddos so the parents could see how much they changed over the year. I watched her look around anxiously as other children milled around with their parents. The really cool thing about her kindergarten room-- it was the very same room her daddy went to kindergarten in 38 years earlier. We live in the house my husband grew up in, so Lily goes to the same school Cameron and his sisters went to.

First day of 1st grade!

I looked around at the other parents wondering if I would recognize any of them and noticed many of them had tears in their eyes. I overheard a few of the women saying things like, “I can’t believe my baby is all grown up! I’m so sad she is starting school! I wish I could stop time. She is growing too fast!” I have heard this echoed many times from many parents over that last few years. Although I understand, I don’t feel the same way. Yes, Lily IS growing up fast, but instead of being sad about it? I’m ecstatic! I was given 15 months to live when I was diagnosed with mesothelioma. Lily was 3 1/2 months old at the time. If I had not sought out the radical surgery and treatments I had, I would not have been alive to see her 2nd birthday let alone her first day of kindergarten, first grade, and 2nd grade! I was not supposed to be alive to see Lily grow up and celebrate her 7th birthday or my 43rd birthday for that fact!

First day of kindergarten!

These milestones, which some people just take for granted, are ones I celebrate with gusto. We all get older and know that our kids will have many more first days of school and many more firsts of different kind-- first date, first boyfriend, first kiss (although I am hoping those are a LONG way away)-- but I will even celebrate those. So instead of getting choked up about how fast she is growing, or lamenting the fact that I’m getting older, I do quite the opposite. BRING IT ON! I want to grow old. I love those little lines around my eyes and, if I didn’t bleach my hair white, I would even welcome the gray hair I know is there.

It is a very different mindset I have now. After being given a veritable death sentence almost 7 years ago, these memories of firsts are sweet and the milestones that much sweeter. So, the next time your child seems to be growing up too fast or you need to renew your drivers license because 4 years has passed, don’t moan about growing older. Embrace it because the alternative is not that great. Life is grand and being here and present in it is simply wonderful.

Being a parent, my biggest fear is my child getting sick. I think that is a constant fear, regardless of how old your child is. So when I was diagnosed with mesothelioma, my parents had to face that fear. I was their child, their baby, and now I was fighting for my life. Then, with me being a new mom, they had to take over my role as a parent while I was in Boston for my surgery. They were much more than Grandma and Grandpa—they were, in every sense of the word, parents to her in our absence.

When I was released and able to go home, our plan was for me to live with my parents for 2 months so they could still help with Lily while I recovered from surgery. I was not able to care for her on my own and Cameron had to work so we could keep a roof over our heads. I arrived in Rapid City, South Dakota on March 2nd, exactly one month after my surgery. Navigating airports after having a lung removed is challenging at best-- I had arranged for wheel chair assistance to get me from the airplane to baggage. As the attendant wheeled me up the ramp to the receiving area, I caught a glimpse of my mom. The look on her face is not one I will soon forget. It was 100 emotions all at once. Fear, gratitude, pity, sorrow, happiness-- too many emotions fighting to get out and the only thing that could surface were tears. I’m sure it was a shock to see me, pale, noticeable thinner and frail-- not the girl who she had left in the airport a little over a month earlier. As we made our way to the baggage area, I pretended that everything was fine and tried to joke. I joked about being helped in a wheel chair, saying having one lung does have its advantages. But nothing helped. She was strangely quiet. Something more was going on. We got my bags and made our way to the car.

On the drive home, I finally just asked her what the hell was up. The damn broke. “Lily has the flu!” She was so upset. Early that morning, Lily started throwing up. Of ALL days to get sick, she ends up sick on the day I came home. I knew I couldn’t risk getting sick so soon after surgery, so I had to call my doctor to find out what to do. I was to keep my distance from her for at least 24 hours after her fever went away and wear a mask if I was close. My mom had a friend come over and disinfect the house while she was picking me up, so as to eliminate any possibility of getting sick. My mom was so upset because she knew how anxious and excited I was to see and hold my baby girl, and now it was going to be prolonged a few more days. My attitude? Oh well, what can you do. I would just have to wait an extra day. I wish it were that easy. In reality, I was heartbroken. I couldn’t wait to hold her, kiss her, look at her sweet little face, and get to know her again. It had been 4 long weeks. I missed her entire 6th month of life, and I was anxious to catch up.

When we walked through the door an hour later, Lily was home with my dad. I had to put on my facemask and look at her from across the room. She hadn’t been sick in awhile, but to be safe, I needed to keep my distance for another day. I choked back tears, feigned exhaustion, and went downstairs to my old bedroom and cried myself to sleep. The next morning I was up bright and early and excited to see my baby. She had gotten so BIG over those 30 or so days I was gone! She was eating baby food, she could roll over, and pull herself around or creep-- she was so adorable. I couldn’t wait to hold her, inhale the scent of her, and just get to know my baby all over again.

Lily was in the living room with my dad and mom when I came upstairs from the bedroom, sitting on my dads lap cooing and talking. I walked in and sat in a chair across from them. Dad held Lily out to me and all I could say was, “Hi Baby! Mommy missed you!” My dad handed her over and she was in my arms for the first time. I would love to say that she recognized me and it was perfect, but I think she was still a little confused. As I held her, I began to hum the song I used to sing to her to while rocking her to sleep. It was just a tune I had made up but it was our song. When I started to sing, Lily looked up at me, smiled a big gummy smile, and rested her head against me. She remembered me. I cried more tears of joy this time.

Over the next few days, my mom still took her to daycare so I could rest. At this point I was still sleeping a lot and recovering. It would take all my energy to get up, get Lily ready to go, feed her, and send her off. I would go watch TV in my parents bedroom, take a little nap, wake up, have some lunch, take a walk, or someone would come visit. I would usually take another nap in the afternoon and then my mom would come home with Lily. We settled into this little routine for the next month or so. As my strength returned, I was able to care for Lily longer and longer. By the time April rolled around, I was able to care for her all day.

During April, I had to go back to Boston for post op check up. I flew out to Boston on a Monday, had my appointment on Tuesday with Dr. David Sugarbaker and the medical oncology team at Dana-Farber Cancer Institute. They decided on my chemotherapy protocol and sent all the information to my oncologist in St Paul. A long busy day, but a lot was accomplished. I flew home Wednesday, a quick trip, but frequent trips to Boston were all part of my life now. Cameron, my husband, was able to make only one trip out to see us during those two months. He drove overnight 12 hours in a brutal snowstorm to get to Spearfish to spend the weekend with us. I had only gone one month without seeing Lily, he had to go through three. In that three month time, he spent approximately 36 hours with her. Once again, not ideal, but it was a sacrifice he had to make. What we are both thankful for is that Lily was so young, she doesn’t remember any of it. She was surrounded by people who loved and cared for her.

After a very fast weekend, we said our goodbyes to Cameron, and made plans for his next visit, which would coincide with my trip home. We planned to go home at the end of April, beginning of May, right before I was to start chemo. Cams would drive out, pick up all of our stuff and myself, and the two of us would drive back to Minneapolis. My mom would fly out with Lily a week later.

It was during the last weekend in Spearfish that the true meaning of “it takes a village” was revealed to me. Some friends of mine and my parents put together a chili feed benefit for Cameron, Lily, and I to help offset some of the medical and travel expenses. Cams and I were absolutely blown away by the number of people and the amount of support that surrounded us. All the people from my hometown came out to help us. Our travel back and forth to Boston didn’t seem so daunting anymore. The money raised from that benefit paid for many airline tickets and hotel rooms. Cams and I finally got into the car and drove those 600+ miles home on the first of May-- our hearts filled with love, and hope. My appointment in Boston had been great and now I was to start the next leg on this cancer journey-- chemotherapy.

Community—a sense of community and renewed hope. That is what the overwhelming feeling was at the Mesothelioma Applied Research Foundation's (MARF) annual symposium on malignant mesothelioma. The symposium took place from Wednesday July 11th to Friday July 13th in Washington DC—no where else can you have, all in one room, world-renowned doctors, other medical staff, lawyers, patients, their loved ones and caregivers, as well as those who have lost members of their family to the disease. Everyone came together for a single cause, to help find a cure for mesothelioma. What a very powerful testament to what the MARF is about.

Wednesday

was advocacy day. A day set-aside for attendees to go to Capitol Hill and have their voices heard. I had 3 appointments that day to see the aids of my two senators, and my representative. It was all at once emotional and empowering to go to the offices and ask for their help in designating a line of funding for mesothelioma. It is a vastly underfunded disease, and since so many mesothelioma cases are a result of military service, we are asking for the Department of Defense to set aside $5 million for mesothelioma research.

Here are some interesting facts on the Congressional Directed Medical Research Program (CDMRP):

• Breast Cancer has received $2.66 BILLION in fiscal years 1992 -2011, with an additional $120 million to be awarded in fiscal year 2012.
• Mesothelioma has been awarded $8.9 million in funding and is eligible to compete with 8 other cancers for a pot of $12.8 million in fiscal year 2012.
• Breast cancer has received 6,107 CDMRP awards to date, while mesothelioma has received 13 awards.

We are asking for a mere $5 million for research. This is why the advocacy day is so vital. You can do your part from home too—call your senators and representatives to tell them to set aside this money for mesothelioma research and make your voice heard.

I will step down off my soapbox now and tell you about the rest of the week.

Meso survivors at the Symposium!

Thursday

was the official first day of the symposium with a full day of scheduled information sessions. One of the best sessions was presented by the 7 of the leading mesothelioma specialists on the newest, cutting edge research for treating mesothelioma. What was so great about this particular session was it was set as a Q & A session, with questions being written down, emailed in, or put on the MARF Facebook page for the experts to answer. To top it off, it was live streamed so those who could not attend were able to watch via the computer.

We, as patients and caregivers, were able to interact and discuss at length issues with these doctors, which we can’t really get when we see them. The panel consisted of the biggest names in mesothelioma treatment. My own Dr. David Sugarbaker, Dr. Harvey Pass, and Dr. Raja Flores, just to name a few.

No question was off limits and, best of all, no egos were present. Each and every one of these men has one goal—to put an end to the suffering and find a cure. The foundation’s web page will have this on their website soon, so you will be able to go back and watch the session. This should be available in a couple of weeks.

The balance of the day consisted of breakouts pertaining to different needs of the people in attendance. Pain control, living your best life, dealing with stress, and a new portion this year, dealing with survivorship issues. This is a growing need in the mesothelioma community, and they were happy to address it.

The day of sessions ended with a legal panel and a little break before the evening festivities began.

Thursday evening is when they hold the gala dinner and awards banquet. It’s a night to honor people in the mesothelioma community who are committed to making a difference. The Pioneer Award was given to my wonderful doctor, Dr. David Sugarbaker, for his groundbreaking treatment and research in the disease. It was such a wonderful feeling to sit there, with two of his other patients, and listen to him tell his story. With tears in our eyes, we gave him a standing ovation—he is, after all, responsible for the three of us being there.

The Bruce Vento Hope Builder award was given to 10+ year survivor Bonnie Anderson recognizing her as an individual advocating for change on a national and international level. She is such a huge inspiration to so many, and so deserving of this award.

The evening ended with live music, a lot of picture taking, and just enjoying being in the company of many who know what this whole battle is all about.

Dr. Sugarbaker accepting his Pioneer of the Year Award.

Friday

continued with more individualized break out classes. The one I chose to attend was on fundraising and different ideas. It was quite informative and fun—it also gave me some great ideas!

The three-day event ended with everyone coming back together and the announcement of the next symposium being held in Las Vegas, March of 2013.

For more information and videos from the Symposium, you can go to MARF’s website at CureMeso.org.

The Mesothelioma Applied Research Foundation continues to be a leading source of funding and research for this disease and its hope is, as always, to find a cure. It is an honor to be a part of something, to continue to give hope, and to help build the community that so many need.

I count myself among the many that MARF has touched, not only as a source of knowledge, but friendship, information, and empowerment. I have been encouraged by their mission and am excited to see what the future brings. I hope you can join me next year in Las Vegas—and make sure you come say hi!

You hear the joking comments “Normalcy is highly overrated” and it is, until something happens to shake your foundation, and everything you have is turned upside down. For some people, it is a divorce, a break up, the loss of a loved one, but for me, it was my cancer diagnosis. I was diagnosed with malignant pleural mesothelioma—rather melodic sounding, but mostly just a deadly cancer. I fought it with everything I had and, right now, I’m doing well. At my last check up, there was no evidence of the disease. I am a 6 1/2 year survivor.

I do a lot of advocacy work with patients who are newly diagnosed with mesothelioma. Most are facing the same thing I was—surgery, chemo, and radiation—not necessarily in that order, but the same three obstacles. The first thing they always ask, is, “How long until things get back to normal?” My answer is never! It is the NEW normal. Everything you knew, every breath, every heartbeat, everyday you wake up—it’s the new, different normal. It’s a world colored by a cancer diagnosis. A world where what you used to know and take for granted was wiped away by those three words, “You have cancer”. But the good news is that the new normal is not a bad place. Yes, it takes getting used to, but if you sit back and look at all that you have gained, it’s a beautiful thing. I don’t get upset about the little things like I used to—it doesn’t matter if the house isn’t perfect before friends come over. We are busy living, not hiding. I have a new appreciation for those around me and have the ability like never before to stand my ground with people who aren’t good for me. My cancer shook us to the core. But in hindsight, it may have needed shaking because the normal I had before was not so great. This new normal I’m living I’m quite happy with—cancer or not. I live my best life and embrace the change.

We talked to other cancer survivors and asked them what their new normal was. I hope you enjoy their answers. If you’re on this cancer journey, maybe there is something to be learned by the voice of experience that can help you embrace your new normal.

Finding my new normal was about priorities. I don’t spend time with toxic people anymore. I enjoy every argument I have with my family because I know I’m here to participate in the argument. I love being with my kids. If I run a 5k, I’m happy that I was able to run it, I don’t care about how fast.
-Lockey Maisonneuve, Moving On From Cancer.

When I finished treatment [for breast cancer] in December 2008 I was ready to begin 2009! Cancer is a more of a psychological disease than I realized, thus leading to many emotions as I went through treatment then went back to my life after treatment. I got through this time by opening myself up to those around me—I let people help me and pray for me. I also did what I could to get my life back in balance. Because I was diagnosed early, I was never physically feeling bad. However, I did let stress bother me and I was constantly on the go. Cancer has taught me to relax, to laugh, and to slow down. I've embarked on a new career, one that I always wanted to do and never pursued.
-Heather St.Aubin-Stout, author Not My Mother's Journey, breast cancer survivor, and blog Sharing My Story.

[My] final treatment meant a release of the anxiety and adjusting to a "new normal" life style. Having been fairly active all my life, it was easy to go back to daily exercise, travel and community activities. I'm sure no one on first meeting me would guess that cancer had been part of my life experience. I would strongly urge anyone who receives a similar diagnosis to investigate all treatment options.
-Ed Vigneau, prostate cancer survivor.

My new normal is normal. I gained a new appreciation of the fragility of good health and retired to pursue personal goals in my remaining years. My advice to a new patient - all treatment options, including no treatment, should be explored.
-Michael Kendrick, prostate cancer survivor.

It took a long time to accept what had happened to me. After the tears were over, I took my new lease on life and pushed forward. I joined Cancer to 5k five weeks after my surgery. I didn't give myself any more time to cry. It was time to live! My new normal day is a happier day. I teach second grade full time. I am a mommy to my 2-year-old son. I am a wife to my wonderful husband of 5 years. I am a survivor and a fighter. That is my new normal. The little things are no longer little to me. I smile brighter, love harder, laugh longer, and hug stronger. I now give back to a community that I now belong to. I have made friends that I would not have met. Cancer changed my life...in a good way!
-Suzanne Ludicke, colon cancer survivor

There are certain words in the English language that you never dream of being a part of your every day life—words such as thoracentesis, computed tomography or, how about this one, extrapleural pneumonectomy—EPP for short. All of these words became a part of my every day vocabulary when I was diagnosed with malignant pleural mesothelioma in 2005. We heard the word cancer first. Then Mesothelioma. And finally the words extrapleural pneumonectomy.

EPP is a drastic surgical procedure that is used to treat pleural mesothelioma. The procedure involves the removal of the affected lung along with the lining of the chest (pleura), portions of the covering of the heart (pericardium), and the diaphragm.

When I was given the diagnosis of mesothelioma, I was given the choice to have this surgery—a means to extend or possibly save my life and get rid of the cancer. I made up my mind to just go for it.

So many people ask me what it was like to lose a lung, many are people who have been diagnosed and are facing this very same surgery. I will tell you about my experience, in hopes that it will help someone in the same position and help their loved ones understand more of what to expect.

I spent the night before the surgery in the hospital preparing my body for the surgery—lucky me. I got to drink the lovely concoction of Go Lytely™—the same stuff people drink before colonoscopies. Well, I’m here to tell you there is nothing “Lytely” about it. It cleans out your system all right—in record time. After spending the night with the effects of the cocktail, I finally got to sleep around 3:00 a.m. I was woken up at 5:30 to be wheeled down to the pre-op staging area. My nerves kicked into high gear. I did my best to be brave and joke around with the nurses, but the impending seriousness of what laid before me was getting to me.

Plus, I was alone. Cameron had not made it in yet. I kept watching the door for him. It was as if he felt my anxiety because when I looked at the door, he came through it the exact time. I started crying tears of relief that he was there with me. He swept into the pre-op ward, back pack in tow, ready to camp out at the hospital for how ever long he needed to be there. He whipped out his camera, much to my dismay, and started taking pictures. At the time, I was not happy about it. But, after the fact, I am glad he got pictures to document it. The anesthetist came over shortly and gave me some wonderful drug that took every bit of anxiety in the world away and brought me to my happy place. Before long, I was being wheeled to the O.R. I vaguely remember going through some double doors into the room and it being cold. I made mention of that to the orderly and then I was out.

For the next 8 hours I was in a blissful state. Unfortunately, I can’t say the same for my husband. He was by himself in the family lounge waiting anxiously for updates. About halfway through surgery, Dr. David Sugarbaker came out and spoke with him to tell him it was all going great. They had started the heated chemotherapy wash and, after that, would replace my diaphragm and pericardium with gore-tex. They would then sew me up and send me off to recovery. He breathed a huge sigh of relief and called everyone to tell them the news. A couple of hours later, I came to as they were pulling the intubation tube out of my throat—I was breathing on my own with one lung. I did it! I made it through! I was wheeled into recovery to wait for a bed in the ICU.

I was very groggy and vaguely aware of a lot of tubes and IVs. I was THIRSTY! Terribly, terribly thirsty. I was not allowed to drink anything, but I was given a sponge soaked in ice water. I asked the nurse every 5 minutes for that sponge. I also had a ringing sensation in my ears that wasn’t there before—I found out that the Cisplatin, that they use for the heated chemo causes tinnitus. I spent the rest of the day in that recovery room, watching people coming and going—waiting, waiting, waiting and my wonderful nurse never left my side. Even when her shift was supposed to be over, she stayed with me until I got sent to the ICU. Finally, at about midnight, a bed opened up in the ICU, and I was taken up. My poor husband had been up since 6 o’clock that morning, and never left my side.

It took awhile longer to get hooked up to all the monitors, and IVs, and the nasogastric tube. I had more tubes coming out of me than I thought possible. I had a chest tube, the NG tube, another drainage tube somewhere around my chest, the catheter and then there where the 4 or 5 IV lines—each one delivering a different medicine or being used for blood draws that take place every day.

The doctors don’t mess around with this surgery. They want you up and moving as soon as possible. After the first night, they had me swing my legs off the bed to “dangle”. Then they had me up and sitting in a chair. Every day they would check the chest tube and after a couple of days they were removed. After the 3rd day, the nasogastric tube was removed. Yay! I could now have a liquid diet! I also got up and walked around the ICU a few times a day with the help of a walker that holds the oxygen tanks (which I was still on) and all the IVs. I was finally well enough to move to the step down unit.

During all this time, I didn’t have much pain; I kept on top of it with the pump. As I got moved to the step down unit, and eventually my room, I was able to take pain meds orally and no longer on the pump. I slowly got my appetite back and, after a minor setback with my kidneys, I started feeling pretty good, all things considered. Thoughts of certain things were daunting—how could I be a parent to my baby? Would I be able to pick her up and hold her? Would I be able to garden? Would I be active like I once was? Would I be able to go back to work in 12 weeks (THIS makes me laugh now)? When I was finally discharged from the hospital and sent home, I was so happy, but also nervous. I was responsible for myself now. I was surprised at how much I slept, but soon realized healing is work. I was like a baby after getting out of the hospital—I would wake up, have breakfast, and take a nap. Wake up, eat lunch, do something, take a nap. Wake up, eat dinner, watch TV, visit, read, then go to bed. All the while, I was trying to stay on top of the pain and manage it along with the other medication I was on. Before long, I got the go ahead to leave Boston.

I was now starting my new life post-EPP. When I look back, I don’t remember much about it. All I know is that I am an EPP success story. Dr. Sugarbaker often asks me to speak to other patients about my experience and I tell them all in all, it wasn’t bad. There are things I wished I would have done more of—like walking, more exercise and physical therapy, but these are all things I try to do now. I live a full life despite having one lung. The EPP has left an incredible mark on me—literally. The incision I have goes from under my left breast, up around my side to beside my shoulder blade. I call it my battle wound and I am proud of it. I fought mesothelioma with all I had. I sacrificed my lung so I could live a long full life. Was it worth it? Hell yes. I make my life full of quality experiences, despite the pain and the limitations. It is my choice and I chose joy.

When I was diagnosed, I was thrust into this alternate universe of mesothelioma. For the first year, it was all about me; my surgery, my treatment, my health. But I had met two other patients that were going through the same things, so I was not alone. It was then I became aware of so many more people suffering. Every trip to Boston, I met someone new-- the elderly couple from Utah; the too-young man from New Jersey; the handsome, young father of two vivacious boys from Texas who’s wife also happens to be a Heather. By getting to know this man and his wife, my disease became more about others and my heart grew by leaps and bounds. The love for this family from Texas forever stamped on my heart-- I celebrated every victory with them. But the cancer came back and, sadly within a year, he died. That was the first time my heart broke. I cried for days for this family. I vowed to make a difference. I vowed to be a prayer warrior. I vowed to be strong.

Through this cancer journey, I've formed an incredible bond with other cancer warriors, and their families. My heart grew with each meeting, with each story being told. The family from Seattle, the family from Iowa. Then I began to meet people from my home state who had heard about me, and sought me out as someone who'd been there. Someone who knew what mesothelioma was. I prayed with them, I cried with them, and with each passing the pain of my breaking heart almost crippled me. The wonderful woman who had two beautiful twin daughters. I didn't meet the girls until the funeral. No words had to be said, just hugs and tears of knowing, and an unbreakable bond was formed. My broken heart was mending. With each person I was able to touch, to instill hope, or inspire, my heart grew stronger. Or so I thought. Maybe just bigger.

"I prayed with them. I cried with them. And with each passing, the pain of my breaking heart almost crippled me."

The capacity to love just keeps expanding. I continue to put myself out there despite the fact that I know this disease will rip my heart apart again, as it did this week. A young family, once again, left without their father. And the other, a man who has been a moving force in the mesothelioma community, has had his voice silenced. But his message will continue on through the work of his family. The same message EVERY mesothelioma patient and loved ones screams - A CURE MUST BE FOUND! The suffering has to stop. It is why we put our desperate hopes in doctors who know more than most. But they, like us, are just human and can only do so much against a disease that still has many secrets.

"The same message EVERY mesothelioma patient and loved ones screams - A CURE MUST BE FOUND! The suffering has to stop."

This is why I continue to tell my story, and share it with others. To give hope when there is none to be found. To be a bright spot in a dark world. There are more and more of us, winning not just the battle, but also the war. With every passing year, we celebrate each other’s victories, and I will continue to welcome people with open arms and an open heart. For the only way to heal a broken heart is to make room for more people and move ahead. Do some good in memory of those whose names are forever stamped on it. Their battle was not in vain. And although my battle is over? The war is not...I'm not called a warrior for nothing.

My broken heart will mend, but the scar will be there forever.

Love you S.W and L.D. May you Rest in Peace.

“Cancer Camp” is what my sister affectionately refers to the days we spent at Shannon’s House that cold February in 2006. We had a room on the first floor toward the back. It was a small room with two mostly comfortable twin beds, a huge closet and a private bathroom. I had packed a fleece blanket that my mom had made for me and brought it with to use in the hospital, and I was so glad to have it with me while I was at the house. It was a little piece of home that I had while healing. She had also made my sister one, and so we both had our blankets from mom with us for “Cancer Camp”

The house was, at most times, occupied by at least 3 other patients and a couple of spouses of people who were in the hospital-- it was quite the collection of people. There was the man from Florida who had a form of Myeloma and was in Boston for a clinical trial. Another man from Pennsylvania who was staying on the 3rd floor was also a mesothelioma patient, going through radiation treatments in Boston. He would just stare at me with disbelief every time he saw me, and would say. “I can’t believe you just had surgery, you look amazing.” We would see him mainly around dinner time, when he would come down to try and eat something. A wonderful addition to the house was a wife of a man who was in the ICU, suffering from the late stages of mesothelioma. Despite his dire diagnosis, he was a fighter. His wife, Lisa, and my sister became fast friends and spent many evenings drinking beers at the dining room table, trying desperately to have some semblance of normality during this strange time.

My sister was an AMAZING caregiver. She was able to anticipate my needs, made sure I was eating and made special trips to Trader Joe’s whenever I even mentioned something might taste good. She made sure I had enough pillows, got all my prescriptions for me from the drug store, bought me some comfy, soft t- shirts to wear around the house and made sure I got up and walked. Most days it was too cold to go far outside, and it was also hard for me to breathe the icy air, she wandered around this big Victorian Mansion with me. Up the flights up stairs, through the halls, down to the basement, 2 or 3 laps around the basement, back up to the main floor-- we knew every nook and cranny of that house.

When I wasn’t walking, or eating, I was sleeping. I slept so much during those first few days out of the hospital. I also had a couple of visitors while I was there. My wonderful friend and lawyer, Jennifer Lucarelli from Early Lucarelli Sweeny and Strauss, came to see me and meet my sister while I was there. She was immediately struck by my positive attitude and sense of humor about the whole situation. She said she had never met someone quite like me. It was a relationship that started a few months earlier when I had contacted her law firm in the middle of the night after finding out that I had a cancer caused by asbestos exposure. She called me first thing the next day and we bonded during that long phone call. Finally, after all those months, I was happy to meet her face to face. She didn’t stay long because, even though I felt good, I still tired out quickly after visiting and needed to lie down. A few days later, my husband’s nephew, who was going to school at Cornell University in Ithaca, NY, had come to Boston with friends for the weekend. He came to spend a couple of hours with me. He brought me a big, comfy Cornell University sweatshirt that I got a lot of use out of those next few weeks! Those two visitors broke up the day-to-day tedium.

During those two weeks, I still had medical care. The home health nurses came to the house to check my vitals, and found my heart rate to be extremely high. A quick phone call to Dr. Sugarbaker was made, a prescription phoned into the Walgreens and that little complication was under control. Having the nurses stop by helped put our minds at ease. Things were progressing well. I had my follow up appointment scheduled with Dr. Sugarbaker on the 28th of February. I had been feeling pretty good and was hoping for good news.

Tuesdays at Dr. Sugarbaker’s office are always hectic. Many patients were waiting to be seen that day, most are there for follow up check ups, some are newly diagnosed mesothelioma patients. The waiting room is always full, as are the over flow area in the hallway. It was a reunion day for me. I was able to see both Doug and Sandy that day and check up on each other while we waited to see the doctor. When I was finally called, I was nervous-- what if I wasn’t far enough along to be able to go home? Then what? My sister had already lengthened her stay by a week and couldn’t do much more. I didn’t think I could stay by myself. My fears were unfounded; the good doctor said everything looked and sounded great. I was healing beautifully, my heart sounded normal and, best of all, my scans were clean. I got the go ahead to go home to my family!! My next follow up appointment was made for 6 weeks and the next steps on my journey would begin after that in May. In 6 weeks, I would meet with the oncology team to get the protocol for my chemotherapy and radiation, but in the mean time, I was sent home to heal.

Our flights were scheduled for March 2nd, exactly one month to the day of my surgery. I was finally going to get to see my baby girl! My sister and I flew to Minneapolis together and from there we had to go our separate ways. We hugged at the gate, cried a while and I thanked her over and over again for putting her life on hold for me. She just hugged me and told me she loved me. I had a 5 hour layover while waiting to head to Rapid City, SD where I was meeting up with Cams and our dogs to spend the afternoon with them. After that, I hopped on a plan to head to my parents’ to recover and, finally after being a patient for a month, I was going to be a mom again.

If you ask my daughter about my cancer, she will tell you one thing, “I saved my mommy’s life.” She says it in such a nonchalant manner, it is if she is saying “The sky is blue” but she is right, she DID save my life.

My husband and I didn’t rush into parenthood. We waited 7 years into our marriage before trying to get pregnant. I was a little nervous that we might have some issues conceiving; I was 35, not some young virile girl. I had no idea how long it would take to get pregnant, or if I even could. But, we were lucky-- 3 months later, I took the pregnancy test (3 of them actually) just to make sure. They all said the same thing-- I was pregnant! I was going to be a MOTHER! It was funny how almost immediately I started rubbing my belly and thinking of all of the scenarios of having a baby. What would life be like to be a mom and have a baby? What kind of mom would I be? A fun mom? A strict mom? The cool, fashionable mom? I wanted to be the good mom, the one with the kid that behaved. I wanted to be the mom that had the career with the fulfilling family life at home.

When Lily decided to come into the world, she did so on her terms. After finding out she was in the wrong position, we had an emergency c- section. I remembered saying, “At least she will have a round head.” I’m always looking at the bright side of things. When I finally got to hold her, I was unprepared for the amount of emotion that overcame me. All at once, I wanted everything for this little bundle in my arms. I wanted to protect her from anything that might hurt her. I wanted to nurture her to become the best she could be, teach her, coach her, love her like no mom has loved their child before. The whole working mom scenario seemed not so important. I just wanted to spend time with her, spend time getting to know her, study her and memorize every detail about her as she changed before my very eyes. Nothing really mattered anymore, but this little girl who was so dependent on me. She became so much more to me that I ever dreamed a child could.

When the mesothelioma diagnosis came just 3 1/2 short months later, my first thought was Lily. I was supposed to be there to raise her! I was her mommy. I NEEDED to be there. As a mother, we make necessary sacrifices for our children without giving it a second thought. I sacrificed being there for Lily’s 6th month of life, so I could be there for the many years to follow. It was pictures of her, emailed to me while I was in the hospital, that gave me the strength to fight, to get up and move, and heal. It was this adorable little girl that needed her mommy to live that gave me the courage to face the unknown world of life threatening surgery, chemo and radiation. It was, in essence, being a mom that saved my life; so Lily is right when she tells people that she saved my life.

With this year’s Mother’s Day, and every Mother’s Day I’m blessed with, I’m reminded to look back, and reflect on what being a mom is. I’ve ended up being just the type of mom I always wanted to be, one that is here to celebrate Mother’s Day with my little girl, who saved my life.

The entire 11th floor of Brigham and Women’s Hospital in Boston is dedicated to thoracic patients. They have lung transplant patients, collapsed lung patients, esophageal cancer patients and, of course, extrapleural pneumonectomy or EPP patients like myself. The nurses and residents are highly skilled and know exactly what to do to care for us.

The first few days after surgery are a blur; I was in the ICU for 3 days. During that time, I had to pass certain milestones before I could move to the step down ward. The first thing I had to accomplish was “dangle” that was sitting on the side of the bed with my feet “dangling” No easy task when there are about 14 tubes connected to you. After I accomplished dangling, I got to graduate to sitting in a chair-- woohoo! This was a huge step and meant I actually got up out of bed. After sitting for a couple of hours, I would need to sleep. It must be what a newborn feels like. Simple tasks would exhaust me.

The second day in the ICU I had a very special visitor; my dear friend Doug, who I had met back in December at an MRI appointment. He too, was a mesothelioma patient and was scheduled for surgery the next week. He told his wife before coming to see me that if I looked awful, or was in bad shape, he wasn’t going to go through with the surgery. The moment I saw him and his wife, Jane, I lit up-- smiled from ear to ear and was elated to see him. His first words to me were, “Damn, now I have to go through with the surgery.” I was limited to 15-minute visits with people, so they couldn’t stay long.

Me escaping -- the only way I could rest in TICU

Not long after, the nurses got me up and walking with the help of a huge walker contraption. It was tall, had a place for the oxygen tanks to sit and another place for all the IV bags to hang. I would lean forward on it, my hands holding onto two handgrips on the top for balance, and I would do laps around the ICU. This exercise I would do a few times a day-- getting up and walking is so important after chest surgery so fluid doesn’t settle in the chest cavity. After 3 days, I was well enough to go to the step down unit called the TICU; this was probably the most unpleasant part of my hospital stay. The TICU was a ward type of room with 4 beds, sectioned off by only curtains for privacy. There were two shared bathrooms, one on each side of the room, and no television. This was before the days of WIFI in the hospital rooms and before the days of smart phones, iPads, e-readers, or any other such items that make a hospital stay a little more bearable. I had an mp3 player and a cd player with headphones-- that is what kept me sane during those long days.

Flashing V for VICTORY on one of my many walks around the 11th floor. This was around my 9th day or so-- don't I look lovely?

I was the only female in this large room; two of the other patients were also EPP patients, and the 4th was a collapsed lung patient. We were all in about the same place in our recovery. During those next 5 days, my kidneys stopped functioning correctly. It was a side effect of the heated chemotherapy. The staff would come in and check my creatinine levels to help determine my kidneys' ability to filter fluids. If creatinine levels are too high, your kidneys won't function properly. My creatinine levels kept creeping up and up and, by the 4th day, I was told if they didn’t start declining by the morning I would have to have dialysis. This scared me. I had already been through the wringer and now I was up against one more set back. I didn't want to have to do dialysis. I started praying and praying hard. I told my husband to email everyone on our email list and to call my parents and ask them to pray-- this is all I knew how to do.

The next morning, when my blood work was done, I was fully expecting to have to start dialysis. My medical staff found that the creatinine levels had started to drop! During the night, my kidneys had started functioning and were filtering the fluids like they were supposed to-- no dialysis for me! Later on, my dad told me that he had a dream the night I asked him to pray; a bright column of light entered my room through the window and angels rode it down from Heaven. He saw them surround my bed and start singing and, when he woke up, he knew that everything was going to be ok. Miraculous healing? I think so no matter what anyone thinks. I hang onto that.

From that day on, I started recovering really well, and so did my kidneys. They started working so well that they were filtering too much, the opposite problem. I now didn’t have enough magnesium and potassium, so I was put on supplements to keep those levels normal. If you've ever had to drink potassium drinks, you would understand how unpleasant this is. It’s a nasty tasting concoction they mix with cranberry juice in an attempt to make it palatable, without success. I some how managed to choke it down and, slowly but surely, my kidneys started to behave themselves.

Baby Lily!

I was finally moved to a normal room in yet another wing of the 11th floor. Every day, Cameron would come to the hospital, go to the family waiting room, update emails and print off the pictures of Lily that my mom would send us. We literally watched our baby grow through grainy black and white print outs of pictures, but they were our lifeline to our little girl. I had a huge stack of these photos I would show to the nurses, who would look at them while trying to hold back the tears. My beautiful little girl made me fight harder each day. During my stay, I walked countless miles around the 11th floor. If you do something like 24 laps, it equals a mile. They told me to walk, so walk I did. By this time, my friend Doug had had his surgery and was also recovering on the 11th floor, in another wing. So during those walks, I would make sure to stop in and see him. He had his ups and downs as well, but in no time was out of the hospital and on his way home. I also met another woman in the hallway, Sandy. She had her surgery the day before mine and we were introduced by the social worker for the mesothelioma program. We called ourselves “surgery buddies” and exchanged information. We still keep in touch to this day.

It was those last days in the hospital that was the hardest. My husband had to return home on the 17th of February, and my sister arrived to take his place. As much as I wanted him to stay, bills needed to be paid and he had to get back to work. Danna, my sister arrived late in the afternoon and was a little nervous. It is always a shock to see someone after surgery, no matter how well I was doing; I was still not the vibrant sister she remembered.

It was on February 18th that the seriousness of this disease and the people it affects hit us. Doug’s wife, Jane, came to see me that day to tell me that our friend Bill had his surgery on the 17th. Cameron and I had met Bill and his wife Gloria back in December, became fast friends, and stayed at the same guesthouse. We had spent our evenings together and were quite close. Knowing that Bill was quite a bit older, I was worried about his surgery. Jane’s news for me was not good-- Bill didn’t make it. His heart simply could not take the stress. The tears flowed for him, for Gloria, and their family; all of who had been there to support him. They had left sometime during that night, and we didn’t even get a chance to tell them how sorry we were. When I called Cams to tell him, he didn’t take the news well. It was the one time he gave into the sadness, the anger, and the fear. He told me later that after we hung up, he collapse to the floor and curled up and just sobbed. Bill’s death hit us all very hard, and we vowed to fight on, in his memory. That was the first of many heartbreaks.

This is Shannon's House-- the home we stayed in.

Finally, 18 days after checking into the hospital, I got the wonderful news that I could leave. I was not able to leave the Boston area for a couple of weeks yet, but I was no longer a patient IN the hospital! My sister was there to help me with my things; we jumped into a cab and made our way back to Shannon’s House, a group home for adult cancer patients and their loved ones to stay during treatment and recovery. That big old, Victorian home in Brookline was to be our home for the next 2 weeks and my life with one lung was just getting started.

On April 24th, I had my bi-annual check up in Boston with Dr. David Sugarbaker. It’s been 6 1/2 years since my diagnosis. It has been 6 years and 3 months since my subsequent surgery to have the tumor and my lung taken out—wow! I get giddy when I think about it. The few weeks before my appointments I usually suffer from what I call “Scanxiety,” or this anxiousness that comes before the scans to see if “it” came back.

This time, however, it was not that bad. I was a little nervous, but not seriously. I think maybe the main reason was during this trip I was meeting a patient who I had spoken to on the phone a few weeks prior. Bill O’Brian contacted me to discuss his upcoming surgery. It just so happened that his surgery was scheduled for the 11th of April and he would still be in Boston when I was going to be out for my appointment. I had spent about an hour on the phone with him and his wife, telling them what I had been through and what to expect. Something I vowed to do for others, since there was no one to do that for me. In those 60 minutes we bonded. Before we hung up, he said to me, “I just love you!! I really do! You’re family now!!” We made plans to meet when I came to town.

Bill and I.

My flight arrived at noon; I dropped my stuff off at the hotel and headed over to the apartment that Bill had rented for the duration of his stay in Boston. He and his daughter were outside waiting for me when I arrived. Even though this was our first time meeting, it felt like we were long lost relatives. He looked amazing despite having had a pleurectomy just 12 days earlier! We spent the afternoon together at the apartment talking over our lives, his diagnosis, his exposure to asbestos, and sharing my story. We had lunch at his apartment and just enjoyed each other’s company. Our get together was good for the both of us. He kept telling me how happy he was that I came by. I told him wild horses could not have kept me away. After a few hours, I knew he was getting tired, so it was time for me to leave. We said our good byes and promised to keep in touch.

My appointment was scheduled for the next morning, so I just went back to the hotel to rest and relax. I am thrilled to say that everything is perfect. No cancer anywhere! Dr. Sugarbaker always greets me with “Hey! There she is!! My favorite patient” when he walks into the exam room. He goes to shake my hand, but I insist on a hug, the man did after all save my life. He complimented me on all I’ve been doing to raise awareness and is so happy with my progress.

New "family" members.

After my appointment, I always go to the new patient orientation to speak with people who have recently been diagnosed with mesothelioma and are there for the first time. I know how they feel. I know the fear, the uncertainty, and being overwhelmed with all that lies ahead of each and every one of them. I hope that in some small way, I can alleviate some of that fear and be that glimmer of hope that every person who hears “You’ve got cancer” so desperately needs.

I felt a renewed sense of purpose after this trip to Boston. It makes me want to work harder to raise more awareness for mesothelioma and get more voices of survivors heard. I don’t want to just sit back and do nothing. This is me just getting started.

Debbie & I finally meet!

Friends

I cannot remember the moment I became aware of other mesothelioma warriors around the globe, but, sometime in the last few years, my friendship base grew from a couple of people I knew from Boston to many people from all over the world—the United Kingdom, Australia, Brazil; the list goes on and on. A few in particular stuck out because of their fierce passion against this disease and what it has done to their lives and to others’ lives as well. “Turn anger into action,” they say. Sadly, many have passed, succumbed to this dreadful disease and mourned by people worldwide. Many are doing well, fighting hard, and making it known that they won’t give in. I was lucky enough to meet one of these brave women this last weekend when my husband and I attended the Asbestos Disease Awareness Organization’s annual conference in Los Angeles, CA.

Debbie Brewer is a tireless mesothelioma warrior in England. We became Facebook friends about 3 years ago and we both had been aware of each other for months before that. Debbie and I have a lot in common; I nicknamed my tumor Punxatawny Phil and she nicknamed hers Theo; we both sought out rather extreme mesothelioma treatments for our disease and we both had great success with them. The friendship grew through the last few years; I would cheer her on when she was giving speeches all over the UK about her battle and she would do the same for me when I was asked to share my story at various conferences. When I found out she was to receive the The Alan Reinstein Award for her commitment to education, advocacy, and support to the many people she comes in contact with, I was elated! It also meant that we might actually be able to meet after all this time since I planned on attending the ADAO Conference as well.

Plans were solidified for both of us and we were finally going to meet!

When I was given my mesothelioma diagnosis, I felt so very isolated. Here I was, a new mom and just diagnosed with a cancer that was not normally found in women my age; I was facing odds that seemed daunting at best. Through the next few years, part of my recovery was to get involved in the mesothelioma community and, at the urging of a couple of friends, I attended a conference in Washington DC put on by The Mesothelioma Applied Research Foundation (MARF). It was there that I met Linda Reinstein, who is the co-founder of the Asbestos Diseased Awareness Organization. As we talked through lunch, Linda kept telling me how important my story was. It was Linda who made me realize I had a voice, a story to share, and hope to give.

When Linda invited me to speak at the ADAO Conference in 2011, I jumped at the chance. She asked me to speak on the value of my life in dollars and tears; to speak about the cost of mesothelioma diagnosis, but not strictly monetary. It was this opportunity that started my advocacy mission. I got more involved with bringing awareness and even turned my yearly “Lungleaving Day” party into a fundraiser for mesothelioma research.

From left to right: Myself, Debbie Brewer and Linda Reinstein

Faith

So as the end of March approached, so did the date for the ADAO Conference. My parents arrived to stay with Lily so Cameron and I could both go. Cameron knows how important it is to be a part of an organization like the ADAO and he looks forward to this event every year now; having his support means the world to me.

When we arrived, I checked Facebook to see if Debbie was in yet and when we should plan to meet. I’ll admit, I had butterflies in my stomach at the thought of finally meeting her. We agreed to meet in the lobby and we both rushed down; I got off of the elevator, took a few tentative steps into the lobby and found her; her fabulous red hair was the first thing I noticed. We both let out a little squeal and ran to each other. Finally, after all these years we were meeting and it was seriously like a dream come true for me. We hugged, took pictures and sat down together beaming. Just then, Linda arrived and we were all able to reacquaint ourselves.

Debbie, Cameron and I spent the afternoon together; Cams drove us around LA so we could do some sightseeing. We talked and talked, comparing stories, finding out that our stories were so similar. Debbie’s exposure also came from her father who worked with asbestos. We talked of losing so-called friends, gaining amazing new ones and how, when she was diagnosed, she had no one to look to. From that feeling, Debbie decided to become the person that others looked to. I had the same experience here through my own disease. We both are all about hope, fighting this disease with our entire being, but mostly LIVING.

When we got back to the hotel, Debbie and I stopped in the bathroom where we met a woman who was getting ready in there because her room was not open yet. We discovered that we were all there for the ADAO conference and she told us her story of how she lost her husband 9 years previous and, still to this day, the horror stayed with her. She asked how asbestos affected us and when we told her we were both mesothelioma survivors, Debbie 5 1/2 years, and me 6 1/2 years, the look on her face was priceless. Her experience with mesothelioma was horrible; for her to meet us by chance, two vibrant, thriving survivors, she burst into tears. She knew then, despite all her misgivings she had in coming to the conference, she was meant to be there.

This inspiration is exactly what Debbie and I both believe in and right there, in that moment, it made everything so right. I also met two other women at the conference who told me that my story inspired them and they made sure to share those stories with me. Debbie and I know things happen for a reason-- without our mesothelioma diagnosis, without Theo and Phil, we would not have each other. We would not know all the other amazing people that make up this small and tight knit community.

From left to right: Debbie Brewer, Linda Reinstein, Julie Gundlach and me

I also got to spend the rest of the weekend with another amazing warrior, Julie Gundlach, who is a peritoneal survivor, and advocates from all over the globe. All of us came together wanting the same thing; a worldwide ban on asbestos.

The Future

As the weekend came to an end, Debbie and I knew our time together was too. I likened the experience to going to summer camp when you were a kid—you make fast, fierce friendships and, when you go home, you literally ache for these people again. Thankfully the internet makes the world much smaller. I can find Debbie on Facebook and we are able to visit through Skype. We made friends with people from Italy, Belgium, Brazil and, thanks to social media, we can still be involved.

It strengthens my resolve to work harder to make people more aware of mesothelioma, to show the world that this disease doesn’t mean a death sentence and to advocate the need to ban asbestos use.

I will continue to strengthen the friendships as we all continue join together on our journey. And for my next big trip? I think it’s my turn to go to the UK to see Debbie.

Here is the video of my speech from the 2011 ADAO Conference-- "The Value of My Life in Dollars and Tears"

Photos of the ADAO Conference are taken by Emily Reinstein and provided courtesy of ADAO.