Heather Von St. James | Mesothelioma.com

  • Courageous Mother, Wife and Survivor of Mesothelioma

Beating the Odds

My Decade of Survivorship

Without treatment, I wouldn’t live past 15 months. In November of 2005 my doctor said I had malignant pleural mesothelioma. He said “cancer”, but all I heard was that I might not be able to raise my three month old daughter, and my husband might become a widower after just six and a half years of marriage. I learned that my father, a man who worked in drywall construction, had unknowingly exposed his own little girl to asbestos through his work jacket. Treatment options were limited and there was no guarantee. Today, I’ve outlived my original prognosis and continue to raise awareness of this terrible disease.

Photo by Kevin Wood Photography

10 Years in 10 Months

I kept thinking how surreal all of this was. This stuff happened to other people, not me. But, here I was, going through it.

Photo by Kevin Wood Photography

Shock

Part 01

Posted on May 17, 2015
With Lily in Fall 2005, prior to diagnosis.

The small family waiting room was cold. A lamp on the table next to the utilitarian couch gave off a harsh blue light from the fluorescent light bulb in it. I wrapped myself up in the white hospital blanket while I waited for the doctor. I just had a CT scan of my chest to find out what was causing my breathlessness, my sallow skin, my relentless exhaustion.

An hour earlier, I had a procedure done called a thoracentesis to remove fluid that had built up around my left lung. The doctor drew out almost a liter of the thin, brownish-red substance. A million things were racing through my mind. The biggest and baddest one of all was the “C” word. Cancer.

I had been a smoker long before I ever got pregnant with Lily. I worked around all sorts of products in the salon that I breathed in every day for the last 15 years. I was so afraid it was lung cancer. Cameron, my husband, couldn’t be there with me, as he was home with our 3-month-old daughter.

When the doctor came back in, he sat down and explained to me that there was indeed a mass in the lower left portion of my lung. I point blank asked him if it was a tumor. He told me that more tests needed to be done. Considering I had just had a C-section 3 months prior, it could be a blood clot — or yes, it could be a tumor. They scheduled me for a CT assisted needle biopsy the next day, and I was sent home.

As I stood in the entryway of the hospital waiting for Cams to come get me, tears silently streamed down my cheeks as I heard the word cancer over and over in my head.

We spent the evening discussing the what ifs, calling family to let them know what I was going through, and holding my daughter close. My mom and dad dropped everything and drove 600 miles from their home the next day to be with us and help out with Lily.

I found myself back at the hospital the next day, getting ready for the CT assisted needle biopsy. The procedure didn’t take long, and I was back home that afternoon. I kept thinking how surreal all of this was. This stuff happened to other people, not me. But here I was, going through it.

Then we waited. The phone call came on Thursday. The doctor told me that the pathologist wanted confirmation, so my tissue was sent to the Mayo Clinic for a second opinion, and upon its return, he would call me. I asked him again; was it a tumor? His only answer was a curt yes, but until the pathology report came back, he had no more information. More waiting.

The following Thursday, Dr. Flink called once again and asked that both Cams and I meet him at his office to talk.

November 21st, 2005. 1:30 p.m. we got the diagnosis. Dr. Flink sat us both down in the cramped exam room. Cams on one side, me on the other, a table between us. The doctor sat in a chair across from us and proceeded to explain that cancer is named after where it originates. Breast cancer is still breast cancer, even if it is found in the liver, and kidney cancer is still kidney cancer, even if it is found in the lungs. I was hanging on every word; did I have breast cancer? Kidney cancer? I just wanted to know.

I had malignant pleural mesothelioma. The blank look on my face told him that I had no idea what I was up against. I looked at Cams, and it was as if all the breath had left him. He slumped in the chair and shook his head. I heard him say, “Oh this is bad.” I just asked, “what is it?”

The doctor asked me if my dad was a miner or if he had ever worked with asbestos. I saw myself as a child, wearing my father’s work jacket, white and crusty from drywall dust. The cancer was in the lining of my left lung. I then heard the doctor say, “If you don’t do anything, you have about 15 months to live.”

15 months? I just had a baby. She would barely be a year old. He then said chemo and radiation could give me 5 years and I thought of Lily going into kindergarten without a mom. All I could do was shake my head in disbelief.

My doctor then told us of an experimental procedure specialized by Brigham and Women’s Hospital that, if successful, could give me 10 years to live. Without missing a beat, my husband said “get us to Boston.”

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.
- Nelson Mandela

Photo by Kevin Wood Photography

Fear / Denial

Part 02

Posted on June 23, 2015
6:30am, the day of my surgery at Brigham and Women’s Hospital in February 2006.

The day I sent Lily off on a plane with my mom while we flew to Boston — I didn’t know if I would ever see her again. It was a fear I didn’t give voice to until long after I got out of surgery.

Facing my surgery was the next big step. I knew on one hand it would probably save my life, but that little voice way in the back of my head whispered and fed the fear of “what if.” What if I die on the table? What if they can’t get all the cancer? What if it doesn’t work and I still die?

Cancer. That word alone is enough to strike fear into the hearts of most people.

Here I was, trying to wrap my head around the fact that I had cancer. Not just cancer, but mesothelioma. Malignant Pleural Mesothelioma. I did what everyone who gets a diagnosis does and went online and searched it. That was my first mistake.

Everything I read confirmed what the doctors told me: I would be dead in 15 months. I decided right then to stop using the Internet to determine my life span.

So many fears surfaced. Not only fear of what the cancer was doing to my body, but what about my family? Would we lose our home? Everything we had worked so hard for during the last 8 years could be gone at a moment’s notice. What about my career that I had put so much time and effort into building? What would happen to all of that?

It simply boiled down to fear of the unknown, and there is so much unknown with a cancer diagnosis. I know it seems silly, now, looking back at those fears, but at the time, they were front and center in my mind. I did pretty good at not letting them take over, until late at night, when the house was quiet.

Cams would be sleeping. I would quietly get out of bed and tiptoe into the nursery where Lily slept. I would stand over her crib, or sit in the rocker, watching her sleep by the glow of the nightlight. That is when I would face my biggest fear — not being around to raise my little girl. The hot tears would roll silently down my cheeks as I would quietly cry out to God to please keep me here to raise her. I begged him to not take me away from her. She needed me.

It was during those long sleepless nights that something replaced the fear: Determination. I wasn’t going to let the cancer win. We were doing everything we could to beat this.

A cancer diagnosis takes away so much in an instant. That loss of control you thought you had over your life is another fear so many face, and we do everything possible to get control of the situation. To some, that can be denial. Others try to learn as much as possible and research every single detail of what they’re facing. I speak from experience when I say that neither way is the healthiest thing to do, but you never know how you will react until faced with the situation.

I don’t know if I ever was in denial… perhaps a healthy case of naivety, but I didn’t deny what I was up against. I didn’t do too much research online because everything I read had me dead and buried within a couple of years. My course of action was to spend as much time with my daughter and family as much as possible, and pray a lot.

10 years later, I can look back and learn a lot about my fears. I now say that fear is an acronym for False Evidence Appearing Real. If you take a long hard look at fear, that is exactly what it is. It builds up up to eclipse every rational thought, and when it comes time to face those fears, you realize that they are not what you thought.

When I faced my fears, I found out I was stronger than I ever imagined. 15 years ago, if you told me what I would face and what would happen, I would never have thought I could make it through. But I didn’t do it alone. I had the love and support of my husband every step of the way. Family and friends were there in my darkest times, and most importantly, I had my faith.

I encourage you to face your fears. I still have them, and will the rest of my life. Fear of my cancer coming back, fear of my husband getting sick, fear of my daughter getting sick… so many that if I let them take over, I would never be able to breathe. So I don’t let them, and I exhale.

My husband kept telling me to just be patient; healing takes time.

Photo by Kevin Wood Photography

Healing / Treatment

Part 03

Posted on July 28, 2015
Cameron’s one and only visit while in recovery, Spring 2006.

To say I had unrealistic expectations about healing would be a vast understatement. I had it in my mind that I would be out of the hospital in a week, home not long after that and back to work in 12 weeks. That’s what I kept telling myself and others, who would politely nod their head and smile. They knew better. My husband kept telling me to just be patient; healing takes time.

I think reality hit about 5 days after surgery. I was out of ICU, but still in thoracic intensive care. My kidneys were not working well. The heated chemotherapy drug I had during surgery made it difficult for them to filter out toxins like they’re supposed to. I was told that if things didn’t turn around by the next morning, I would have to go on dialysis.

That scared me. I started praying. I asked my husband to email everyone so they would start praying too, and to pass the word along. That next morning, my kidneys had started working.

My dad told me that he had a dream that a window opened near my bed, and this bright beam of light came through the window. He said he saw scores of angels ride that light down and surround my bed and heal me. I believe a miracle happened that night.

I was so ready to leave the hospital, but my kidneys ended up working too well, and were filtering too much out. I needed magnesium and calcium supplements daily to get my levels up.

Finally, exactly one month after surgery, I was flying home. I could finally see my little girl again. We had made plans that I would go stay with my parents for a couple of months to recover. I still needed plenty of rest and couldn’t care for Lily on my own. Cams stayed in Minnesota to work to pay the bills, while I recovered 600 miles away in South Dakota.

Day by day I got stronger, day by day I was able to do more and more. Finally, at the beginning of May, I could go back home.

I had chemo on a Tuesday, just one week after returning home. I dressed nicely, with my makeup and hair done. I might be sick, but I would be damned if I was going to look sick. In some ways, that attitude made the chemo easier.

I was younger than all the other patients by at least 20 years. My mother-in-law accompanied me for every appointment, and people thought I was bringing her in. The looks of pity from people when they realized I was the one getting chemo were almost more than I could stand some days. But I would just smile and make jokes about things, like I always do when things are uncomfortable.

Each chemo session lasted about 5–6 hours. I would try to read, doze off, or just watch TV all the while imagining the chemo drugs invading my body, killing off any rogue cancer cells. I would go home, and wait for the inevitable “chemo coma” that would hit. I don’t remember much during those times. I would wake up long enough to take my meds, and fall back asleep.

Somehow, I made it through four chemo treatments with relatively few setbacks. I did need a blood transfusion after the third one, but that was the worst of it.

By some miracle of scheduling, I finished my last chemo treatment a couple of weeks before Lily’s first birthday. I had a lot of time to plan her party, and although some people might think a huge first birthday party is frivolous, to us it was a very important milestone. Friends and family from all over joined us for the special day, and I felt really good.

My radiation treatments were next on the agenda: 30 sessions of IMRT Radiation. This was the hardest part of my treatment. Radiation basically cooks you from the inside out, and the type of radiation I had was, at the time, very cutting edge.

Each session took 45–60 minutes. I had to lie in the exact same position each time. I had little dots tattooed on my chest and side, so that positioning would be the same at every appointment. They lined up those tattoos with laser lights on the ceiling. It was much more involved than just going and getting zapped a little each day.

After the first week, I was exhausted. Once again, friends, neighbors and family rallied around us to take care of Lily while I went to the cancer clinic every day for 6 weeks. At the midway point I felt awful. I was so sick, and so tired. I remember sitting on the table, getting ready to start my 15th session.

I started crying. I couldn’t do it. I wanted to stop.

My body was through—I had lost close to 100 lbs. I couldn’t eat, I was terribly dehydrated, and I had no energy. The nurses held my hand, let me cry and offered to let me go home.

I took a deep breath. I said no. I was there, halfway done. With their encouragement and support, I made it through. I thank God every day for the excellent medical care I had. They did everything in their power to alleviate my symptoms.

Mid October, I finished my last treatment. They gave me a “diploma” and sent me on my way.

I was officially done with all my treatments. I should have been elated. I should have been celebrating. I did it! I survived! But why did I feel so lost, so alone? It was one of the lowest points in my whole journey. I had spent the last year of my life fighting tooth and nail against this cancer that invaded my body. I fought every day with my entire being, and now? I get a piece of paper?

I was faced with a very uncertain future. I had no job to go back to, nor any prospects of what to do. This was not the future I envisioned. It took me a few months to start feeling good again; even though my treatments were over, my body was still suffering from the many side effects of the chemo and radiation. I have tinnitus from the Carboplatin, permanent scarring on my esophagus from the radiation, and my stomach was constantly upset.

But slowly, I started to heal. I started writing. I started sharing my story with people. I felt empowered by the positive response and before long, my feeling of being lost and not knowing what to do was replaced with a new passion. Awareness.

People needed to know about this disease and I started on my blogging journey. I met more and more patients and their families, and saw the devastation caused by this disease. I wanted more than ever to give people hope and to inspire them. As my health returned, so did the fire.

The feeling of loss is hard to explain, but it’s perhaps one of our most universal experiences as humans.

Photo by Kevin Wood Photography

Loss & Setbacks

Part 04

Posted on August 21, 2015
First photo: In the hospital with pneumonia while Lily kept me company in November 2010. | Second photo: Janelle Bedel and I at the CureMeso Symposium in March 2013. Janelle passed away in June 2013.

A cancer diagnosis throws you into an unknown world. In this world, emotions roll over you like big ocean waves. What the future holds, the future you thought you had so carefully planned out, all of a sudden changes with 3 words: “You have Cancer.”

People are quick to give advice, or tell you how they know a person who knows a person who died from your kind of cancer. They mean well, but don’t quite know what to say because suddenly, looking at you and seeing themselves, they are faced with their own mortality. The feeling of loss is hard to explain, but it’s perhaps one of our most universal experiences as humans.

For someone with a cancer diagnosis, it starts with the loss of your health. Then, you feel the loss of control you thought you had over your life. Perhaps you lose your job, or friends who can’t deal with the fact that you’re sick. Everything around you changes.

Some days, it was almost more than I could handle. The most difficult loss I’ve had to grapple with has been the loss of friends and other cancer warriors I’ve met along the way. In my mesothelioma journey, I’ve been fortunate enough to meet some of the most incredible people.

The list is long and varied. As I got more involved with the meso community in the coming years, there were many people who left an indelible mark on my heart. I met my first fellow meso warrior in the new patient orientation at The Brigham and Women’s hospital in Boston. Bill and his wife Gloria were from Maine. He was 72, and an avid outdoors man. Shortness of breath had forced him to seek medical attention, and after 2 years of being misdiagnosed, he was finally told he had mesothelioma. He, like me, was in Boston seeking the help of Dr. Sugarbaker. We became fast friends. After all, we were the only other people we knew with meso at the time. Two months later, I had my surgery, or the loss of my left lung. I was recovering in the hospital when I got the news: Bill didn’t make it through his surgery. His heart simply was not strong enough and gave out on the operating room table. I was numb. He and his wife had just visited me two days before to check on me. I called my husband, sobbing.

There have been too many losses like this to count. As I was looking back at photos over the years, I saw the faces of many warriors who are no longer with us. They are forever immortalized in the files in my computer. Tears silently ran down my cheeks as I took the time to remember each one.

However, there have also been irreplaceable friendships formed that can never be lost. We support each other through the tough times, celebrate with each other in the good times, and mourn like we’ve lost a family member when the cancer becomes too much.

How do I deal with such tremendous loss on such a regular basis? Each and every person that has come into my life has taught me so much. About love, perseverance and what being brave really means. I watched each of them face the inevitable with grace, dignity and faith. I am so blessed to have known so many amazing people in my lifetime.

Sometimes, the dark thoughts come. Am I next? Is the cancer back? It spread to that woman’s stomach; will that happen to me? Your mind starts playing tricks on you, and aches and pains that have a perfectly mundane explanation become much more sinister, signaling the obvious (in my mind at least) fact that the cancer is back.

These symptoms always seem to coincide with my bi-annual check ups. After getting scanned, and all the blood work done, I am once again given the clean bill of health. The fear recedes to somewhere under the surface, waiting for a reason to return. There was the shortness of breath that left me gasping for air, and the fever. It was pneumonia that landed me in the hospital for 6 days, not the cancer coming back. Luckily, that is the only physical setback I have had in the last 10 years. Mentally? That’s another story.

Beating the Odds Whatever doesn’t kill me… Had better start running.

Your mind is a powerful thing. It doesn’t let you simply forget things that have shaped who you are. A few years ago, I found myself being anxious about everything. I was so fearful of Lily getting sick, that when she did, as little kids are known to do, I was a total wreck. I would pace and cry, wring my hands and almost break down. At my husband’s urging, I found a therapist who I hoped could help me. I was diagnosed with PTSD from my cancer battle. I saw her weekly, and she helped me realize that what I was going through was normal, and gave me the tools to help myself.

Through the years, I’ve learned that each of us has our own path with this disease—one with loss and setbacks, but also hope and healing. All I can do is move forward, and hopefully help others who find themselves in a similar battle.

While I have suffered many losses in the last 10 years, what I’ve gained is far more profound. I found my voice, my true self. I’ve found that when faced with incredible odds, I am stronger than I ever thought I could be. I’ve found and surrounded myself with friends and warriors who, like me, live every day to the fullest.

The thought of not being around to raise my little girl seemed like a cruel joke the universe was playing.

Photo by Kevin Wood Photography

Motherhood & Family

Part 05

Posted on September 22, 2015
First photo: Lily and I in Northern Minnesota. | Second photo: Lily and I getting ready to go skiing.

My daughter was only three and a half months old when I got my diagnosis. We have never hid the cancer from Lily. In fact, we discuss it quite often. As she gets older she understands more and more about what I faced and continue to face, and she has a vastly different outlook on life. For her 10th birthday, she told me that instead of presents for herself, she wanted people to make a donation to the Humane Society. My little girl raised over $600!!! I’m so in love with her.

From the beginning, we called Lily an old soul. She only cried when she was hungry, or really tired, and preferred to spend her time as a baby checking out the world. She would just sit back, look around and take it all in. I was completely taken by surprise by how fiercely I loved my little 8 lb bundle, and I knew from the moment my husband handed her to me — all swaddled up tight — that I would lay down my life for her.

The thought of not being around to raise my little girl seemed like a cruel joke the universe was playing.

I would sit with Lily alone in my living room and hold her, her big brown eyes staring up at me, studying every detail of me. I would hold her and cry out to God, begging him to not take me away from her. Then I would stare back at her, promising her I would do everything I could to be around to raise her. She needed a mommy. She needed me.

My quiet determination made it easy to make the decision to leave her in the capable hands of my parents while my husband and I sought treatment for my cancer in Boston. But leaving her was not easy; saying goodbye to her in the airport was the hardest thing I’ve ever had to do. I knew there was a real possibility that I may not see her again. The surgery I was about to have was dangerous and very risky, but it was a risk I had to take. I needed to concentrate on beating cancer.

Without my family, I wouldn’t have been able to. For instance, my sweet mother in law, who had made so many sacrifices of her own raising 8 kids and being a foster parent, showed me the true meaning of strength. She shared with me stories of raising terminally ill foster kids, and how she was no stranger to heartbreak and sadness. Through her quiet support and prayers, she showed me that family means everything. If anything ever happened to me, I knew that my husband and daughter would be loved. And of course, there were my parents, my sister-in-law — doing more for me and Lily than they ever should have had to.

Family doesn’t always mean blood, either. Lily has countless “aunts and uncles” who rallied around us in our time of need and have never left. My “other family” are old friends who were so supportive of my mom and dad while they were at my home taking care of Lily. They would bring meals, wine — anything to help lessen the stress on my parents as they took over raising my baby. All of these people showed me what love really is.

I don’t know what will happen in the coming years. What the future holds is uncertain, but we live very much in the moment. Things can change in the blink of an eye, as we know all too well. I hope my health continues to improve, and I am able to be here while Lily gets older and experiences all that life has to offer her. I hope and pray that we can continue to be open with one another. She told me recently that she feels good sharing her feelings with me — I hope she always feels that way.

Lily, when you grow up, and look back at our life together, I hope you have wonderful memories. Memories that make you smile, make you laugh, and most of all fill you with a sense of overwhelming love, because you are loved beyond measure. You saved my life all those years ago, and still give me a reason to fight every single day.

Where is the justice for the countless victims that have died from being exposed to asbestos? For their families?

Photo by Kevin Wood Photography

Justice

Part 06

Posted on October 23, 2015

“Why are we still having this conversation?” Asks my friend Ann, a real estate agent from Oregon. When her father died 30 years ago from mesothelioma, she never dreamed she would be fighting for a ban on asbestos all these years later.

Her father is just one of the countless workers who lost his life because of negligent asbestos companies.

Justice has no timeline. Whether a life was lost to mesothelioma 10, 30 or 50 years ago, the problem remains: asbestos is still legal and lethal in the United States. This is a travesty. We are one of two industrialized nations who have yet to put a ban on this toxic substance. We still import and consume tons of it. Most recently, it was found to be in children’s crayon sets and a fingerprinting kit sold by dollar stores, party stores, and popular toy retailers throughout the US. Innocent children are being exposed to asbestos, for no other reason than it’s a cheap and accessible additive.

10 years ago, I—like many other newly diagnosed patients—found out that I was sick because of exposure to asbestos. What followed was a crash course in asbestos and mesothelioma. I found out that, at that time, most people didn’t live past 4 months upon diagnosis. Since then, research and medical advancements have improved the average life expectancy for mesothelioma patients, but more must be done to prevent this disease in the first place.

My exposure most likely happened during my childhood: I remembered wearing my dad’s dusty coat to do my chores outside because I didn’t want to get my own coat dirty. It was crusted with drywall that he had sanded off walls and cleaned up off of floors at his job. Here I was, 30 years later—fighting for my life.

Late one night while my mind was spinning, I got out of bed and went online. I finally did what my gut had told me to do: I contacted a law firm to find out what my rights were. What did I have to lose?

The next morning, my phone rang and on the other end was a friendly and compassionate voice, who was able to answer all of my questions about asbestos exposure and what I could do about it. That voice belonged to Jennifer Lucarelli, an attorney with Early, Lucarelli, Sweeney & Meisenkothen. She calmed me down, and for the first time in weeks, I felt hopeful. She knew of Dr. Sugarbaker, and reassured me that I was in great hands. It was such a relief to know that I was on the right path.

I made the decision to hire her firm to represent me in my case against the asbestos companies.

My husband was furious. He thought it was a huge waste of time, resources and money we didn’t have; but after doing his own research, he eventually agreed with me and supported my decision.

Our case went to trial about a year later. It was surreal to see your entire life in a couple dozen file boxes in a courtroom. My life was put on display for a jury of strangers to decide whether or not the asbestos companies were liable for my illness.

The defense settled before the trial was done.

The settlement didn’t come close to replacing everything I lost. I lost my left lung. I lost the entire first year of my baby’s life. There are precious memories of Lily’s life forever darkened by the shadow of cancer. I missed her entire 6th month of life. This was before the days of smartphones and Facebook; digital cameras were just starting to be a thing. I witnessed her growing and crawling through grainy black and white photocopies from emails my mom sent me every day.

I lost my career, my business that I had worked so hard for and dedicated 10 years of my life to. I was a salon owner and hairdresser, and with the loss of my lung, I also lost the stamina it takes to stand behind the chair for 8 hours a day. All of that, gone when I was told I had mesothelioma.

Where is the justice for the countless victims that have died from being exposed to asbestos? For their families? Why are we still fighting for a ban all these years later when we know, without a doubt, the only known cause of mesothelioma is asbestos?

This is why I fight for a ban, why I go to Washington with The Asbestos Disease Awareness Organization and The Environmental Working Group. My voice as a victim of asbestos is a strong one, and people listen. We won’t stop until we know Washington is listening. Mesothelioma may not be curable, but it is preventable. We will continue to educate, to inform, and to fight until there is a ban.

I had to have faith in something else: my doctors, medical science, myself.

Photo by Kevin Wood Photography

Faith

Part 07

Posted on November 23, 2015
First photo: Dr. David Sugarbaker and I at my recent check-up in Houston, TX in October 2015. | Second photo: Holding onto my Dad’s hand.

Faith is a curious thing. You hear it often, “Just have faith!” Faith in what?

Faith is a very personal thing, and it means something different to everyone. When I hear the word faith, my mind immediately turns to God and my faith in Him. But then I think about my cancer journey, and suddenly that word means so much more.

Upon my diagnosis, I never cried out to God and asked him “Why me?” It was more along the lines of, “Well? I have this, and I will do all I can to beat it.” I had to have faith in something else: my doctors, medical science, myself.

Soon, my life became that of a new cancer patient. My days consisted of scans, biopsies, and being poked and prodded more than a person ever should be. I tried my best to remain positive, and I prayed a lot during those tests; I would close my eyes and pray for the doctors, the technicians, my daughter. But, most of the time, I just prayed to live—that they would be able to help me.

I relied heavily on my spiritual faith during those first years of surgery and treatment. It was easy to have faith in Dr. Sugarbaker; he had the experience and expertise to treat my mesothelioma. I started chemo in May of that year, and put my faith in the chemistry. I had faith that the drugs would go in and kill off any errant cells that may have been left after surgery.

I trusted my body would recover from each onslaught of chemical warfare, even though each time, it took a little longer and got a little harder. I trusted my oncologist to help me feel better and to know what to do when my blood counts were low and my platelets were non-existent.

Then, in the fall of 2013, my dad was diagnosed with renal carcinoma. The cancer had metastasized to his spine, and was most likely in his bones. That is when my faith started to waiver. Why did my dad have to get this?

He got an infection in his incision and had to go to the hospital daily for an infusion. The treatment left him with no appetite and in pain. My once vibrant father, who loved food and cooking and had such a zest for life, could hardly get out of bed. He ended up going back in the hospital for most of the month of January. When he got out, he made my mom promise he would never have to go back. He died a month later.

That day, I lost my faith. That day I asked “Why?” and I stopped praying. I rolled my eyes when people thanked God for things. I scoffed at people who said God was great.

One night, I let it all out. I cried, I screamed, I demanded an answer. Nothing… just quiet. See, I thought. God doesn’t care. But in that moment of silence, I heard the words, “Have faith.”

Slowly, the faith I so strongly held before began to creep back. Faith that the sun will come up another day. Faith that if I just keep moving forward I’ll be okay. Faith that I’ll see my dad again one day, and in the meantime, I’m making him proud. That makes me smile, and know I’ll be alright.

I have experienced loss, more loss than a person should by being involved with the mesothelioma community. I have been losing friends on nearly a monthly basis since I got involved with advocacy for this disease. Having faith is a constant exercise. You must trust, ask questions, and believe that all will be okay.

I can’t stress enough how important community is, no matter if you are a patient, a caregiver, have lost a loved one, or are simply struggling in some way — finding a community of people who know first hand what you are dealing with is invaluable.

Photo by Kevin Wood Photography

Community

Part 08

Posted on December 21, 2015
First photo: Survivors at my 9th annual Lung Leavin’ Day celebration. | Second photo: Mesothelioma Awareness Day in NYC.

Communities are everywhere: Neighborhood communities, groups of people with similar interests that support one another in their endeavors, athletes, artists—cancer patients are no different. We crave togetherness.

A cancer diagnosis is a very isolating experience. I was just 36 at the time of my diagnosis, and as a young female, I didn’t fit the average profile of a mesothelioma patient, which made my journey even more lonely. I had never even heard of the disease, let alone know anyone else who had it.

Mesothelioma is diagnosed in only about 3,000 people annually. It wasn’t until I went to Boston to seek out a specialist that I met others who had it. Dr. Sugarbaker encouraged me to talk to the other patients; soon, they became my family, our relationships lasting long after the hospital stay.

Not long after my surgery and treatment, I was invited to the Mesothelioma Applied Research Foundation’s (MARF) annual symposium by friends of mine who had lost their mom to the disease. I had heard about the organization, but didn’t know much about what they actually did. Since I was already going to be in DC with my mom for her job, I decided to go for one day.

I was blown away.

I had no idea that an entire meso community existed. It was overwhelming (in the best way) to meet so many other survivors. There were people who were 8–10 years out; with myself at 4 years, this gave me so much hope that I really could do it.

While I was there, I met a woman by the name of Linda Reinstein. She had lost her husband to meso a few years earlier, and had subsequently co-founded the Asbestos Disease Awareness Organization (ADAO). We exchanged information and became fast friends. I always credit Linda with giving me my voice, because after meeting her, she asked me to speak at the upcoming ADAO Conference. I’ve attended her conference every year since.

After leaving the Mesothelioma Applied Research Foundation’s symposium, I wanted more. I couldn’t wait to meet more patients and get more involved. I also couldn’t wait to go back for the entire event the next year; I jokingly call it summer camp for meso patients. It’s a chance to be with people who intimately know your struggle and celebrate your triumphs. I felt alive and like I was a part of something that I never had before; that is what a community gives to you.

I looked for more ways to connect with people. There is power in numbers; I knew if more people were given hope about surviving mesothelioma and were able to connect, our message would only grow stronger. Enter: the wonders of the internet. Facebook has been a tremendous resource for so many meso patients, not only in the US, but globally. I’ve met people from England, Australia, Sweden, India—this disease affects people all over the world, and we all support and learn from one another. There are numerous online support groups, some sponsored by the Mesothelioma Foundation, others simply set up by people with the disease; online communities are everywhere.

When I started my blog with the Mesothelioma Cancer Alliance, part of the goal was to reach out to another online community: moms. I can’t express how incredible, supportive and accepting this community has been to me and my mission to spread awareness. Cameron and I have connected with online writers all over the world, hoping to help anyone who finds themselves in a difficult situation. It’s not just about a mesothelioma diagnosis, it’s about spreading hope, inspiring others, and making people aware.

More recently, I wanted to reach out to survivors of other types of cancer. I wanted to meet them, to see how they overcame and dealt with the things this life throws at you. I soon learned about an organization called Stupid Cancer after being on a radio show with the founder, Matthew Zachary. Our local Stupid Cancer chapter has monthly meet-ups, where an average of 5–7 people attend. Sometimes more, sometimes less, but it’s been a great experience getting to know the people in this group. I hope that my years of experience can help them in the same way that their strength has helped me.

A few years ago, I decided it was time to start giving back to the mesothelioma community that had given me so much. I began using my yearly Lungleavin Day Celebration as an opportunity to raise much needed funds for the ADAO and MARF. I feel so strongly about the missions of these organizations, and I love putting the time and energy forth to support them, not only financially, but as an advocate.

I can’t stress enough how important community is, no matter if you are a patient, a caregiver, have lost a loved one, or are simply struggling in some way—finding a community of people who know first hand what you are dealing with is invaluable. Having gone through the isolation that comes with a cancer diagnosis—I never want anyone to feel that way. It is the driving force behind why I do what I do: to provide resources and hope for people. I never want anyone to go through it alone.

I still have a lot of work to do, and don’t ever plan on giving up. To me, that makes me a survivor. I’ve been given 10 years more than I was ever supposed to have; I’m not going to waste it.

Photo by Kevin Wood Photography

Survivorship

Part 09

Posted on January 19, 2016
Lily and I at home in January 2016.

A decade ago, I was given a death sentence: I was told that I had 15 months to live.

Here I am, 10 years later, cancer-free and proving that one can live beyond a devastating diagnosis with a mix of good medical intervention and a bit of stubbornness.

Being a survivor is what every cancer patient strives to be. It’s why we go through horrible surgeries, debilitating chemotherapy, and expose ourselves to the dangers of radiation—all to cross over into the “survivorship realm.”

Everyone’s definition of “survivor” is different. I considered myself a survivor from the day I was diagnosed. Others consider themselves a survivor after they finish treatment. For most of us, survivorship is not what we thought it would be.

I spent an entire year of my life fighting an unseen foe. I threw everything at it I could to make sure I would make it to the 10 year mark they told me I “might” live to: a radical surgery, chemo, and radiation. When I finished my final radiation treatment, I was given a certificate—sort of like a diploma—saying I had graduated. I just sort of laughed at the absurdity of it all. I was done with treatment and all I had to show for it was a piece of paper, a hell of a scar and radiation burns. Now what?

I was done with treatments, but had no normal life to return to. Everyone around me went back to his or her sense of normalcy while I was left in tatters. I was done with treatments, but I was still struggling with the effects of radiation. I felt pressure from everyone around me to just “buck up” and be grateful for every minute in the day, and to “live life to its fullest.” But I was a mess. I couldn’t remember what “full” felt like.

People called me a hero; they told me I was so brave. But I was angry, afraid, and anxious. I became the busy person. If I kept busy, and became the perfect mom, perfect wife, and pretended that everything was fine, it would be. Was this what surviving was supposed to feel like?

I tried not to think about the cancer coming back, but it was always there. Those first few years came with follow-up appointments and a new word entered my vocabulary: “Scanxiety.” Every 3 months, I flew to Boston to get scans to see if the cancer had come back, and every 3 months I was convinced it had. For the week or two leading up to those scans I was always beside myself. This was my normal.

People often ask, “when will life get back to normal?” I’m here to tell you, there is no going back. Cancer colors everything.

Over the years, I was able to move on. I still had pain from the incision; I had stomach issues from radiation, but managed them with medication. I found that helping others lessened my own anxiety, and sharing my experience calmed my fears. Telling my story lightened the burden. As I met more people who survived the disease, I realized my feelings were not unique, that many survivors felt much the same way.

My seventh year as a survivor is when the bottom fell out: I started having crippling anxiety about Lily getting sick. It had always been rough on me when she was sick, but this was different. I would pace and wring my hands, I would hover over her if she so much as coughed.

I made everything so much worse in my mind than it actually was. I was convinced she had something other than a normal childhood cold. I felt like I was going crazy. My husband gently sat me down and told me this was not normal. I needed help. I didn’t feel joy anymore. I saw everything through fear-stained vision.

I found a therapist who specializes in post-cancer trauma and was diagnosed with PTSD. I learned how to recognize my triggers and the importance of asking for help. My husband, who has dealt with his own depression, gave me a safe place to go when the anxiety tried to take over.

With therapy, my writing, and my family’s support, I was able to recover from much of the turmoil I had created for myself. Most importantly, I’ve been able to use my experience to help others in the same situation.

Ultimately, being a survivor is so much more than making it through treatment. It doesn’t mean that we have to live every day to its fullest or that everything must return to normal once treatment is over. It doesn’t mean we can’t have bad days or get upset over things others view as trivial. Being a survivor means being real and honest with people. As survivors, we need to talk about the issues, or no one will ever understand the paradox that is survivorship.

I’ve made it through 10 years of ups and downs, and am happy about how far I’ve come. I still have a lot of work to do, and don’t ever plan on giving up. To me, that makes me a survivor. I’ve been given 10 years more than I was ever supposed to have; I’m not going to waste it.

“When hope is in the equation, the odds don’t matter.” I truly believe that, and I plan on being around for many more years to come.

Photo by Kevin Wood Photography

Hope

Part 10

Posted on February 2, 2016
First photo: Directions for plate smashing at my 9th year celebration in 2015. | Second photo: Plates in the bonfire after our Lung Leavin’ Day Celebration in February 2015.

“When hope is in the equation, the odds don’t matter.”

That’s what my surgeon said to me after I got the news that everyone fears most: “You have cancer.” The bottom dropped out of my world. Here I was, a new mom, and I was listening to my own death sentence. Over 90% of patients diagnosed with malignant pleural mesothelioma don’t live beyond 18 months. I desperately needed hope more than anything.

And that’s what Dr. David Sugarbaker gave me. He gave me something to hold on to, the hope that I would be around to see my baby girl grow up. He inspired me to never give up.

That was 10 years ago. I’ve made it to the 10-year mark, a year I was told I might not live to. I’ve made it my mission to share the hope of survival with others—not just surviving, but truly living a good life despite a cancer diagnosis. I’ve shared the good moments along with the struggles, always being as real and honest as possible. I’ve mourned the loss of more friends than I ever dreaded I would.

Because of this, I’ve had my fair share of survivor’s guilt, wondering why I’m alive while others aren’t. But, each person’s path with this disease is unique. We all hope for survival, recovery, a thriving life—but sometimes those things don’t happen. With each passing friend, my resolve to do more, to make more people aware, to make a difference, strengthens. If I help one person—if I was able to smooth the road even a little bit for them, then I’m doing what I’m meant to do.

Every year, on the anniversary of my surgery, my husband and I host a huge party we call “Lung Leavin’ Day,” since it’s the day my lung “left.” The party has grown by leaps and bounds, with over 100 people now showing up at our house to celebrate.

At Lung Leavin’ Day, we take a plate, write our fears on the plate with sharpie marker, and go to the huge bonfire in our backyard and smash the plate in the fire. It’s very cathartic and symbolic of taking charge of fears, literally and figuratively smashing them to pieces. By the end of the night, the fire pit is a bed of coals with broken shards of plates all around.

This tradition means different things to different people. Many come out to support us, but I truly believe that each individual gets something more personal out of it. It’s a celebration of life and of hope.

We use the occasion to give back to the mesothelioma community that has given so much to us. Over the last few years, we’ve raised over $18,000 for mesothelioma research and asbestos education. I think this simple act of giving back gives me hope. By investing in the future of treatments, we are providing hope for the newly-diagnosed patients who can benefit from research that we helped fund.

Cancer took a lot from me. But you know what else it did? It strengthened my faith in a higher power and in myself. It made me realize that I was stronger than I ever imagined I was, and that I could make it through nearly anything. In those times when I wanted to give up, all I had to do was look at my baby girl and remember my doctor’s words.

I had hope.

I had hoped I would be around to raise her. I had hoped I would be around to celebrate Christmases, birthdays, and all those first milestones that come with children. Most of all, I had hoped I would be there for all the “smaller” stuff: tucking her in at night; playing a game with her; talking in the car on the way to the mall—all those little things that make up a meaningful life. That is what I really hoped for, and here I am.

When I found out I had mesothelioma, I could have given up after reading statistics on the disease. The survival rate was dismal at two percent. It’s not very encouraging to read when you are diagnosed with a disease, but instead of giving up, I made up my mind that someone has to be in that two percent survival rate. That someone was going to be me.

My daughter is 10 years old now, and I’m a 10-year survivor. It’s been an amazing journey, and I still live by those words my doctor said to me all those years ago: “When hope is in the equation, the odds don’t matter.” I truly believe that, and I plan on being around for many more years to come.

Thank you for allowing me to share my story with you.
Here’s to another 10 years!