Heather Von St. James

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.

Tags: mesothelioma, mesothelioma diagnosis

Day 3 in ICU- sitting in a chair!

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.

Tags: Brigham and Women's Hospital, Mesothelioma, Mesothelioma Treatments

Dr. David Sugarbaker and I.

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.

Tags: Asbestos Exposure, Dr. David Sugarbaker, Mesothelioma

"We cannot tell the precise moment when friendship is formed. As in filling a vessel drop by drop, there is at last a drop which makes it run over; so in a series of kindnesses there is at last one which makes the heart run over."
-James Boswell

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.

Tags: ADAO, Asbestos, LungLeavin' Day, MARF, Mesothelioma, Mesothelioma Diagnosis, Mesothelioma Treatments

This past weekend I traveled to Los Angeles, California to attend the Asbestos Disease Awareness Organization's international conference, “Asbestos: An International Public Health Crisis”. From March 30 to April 1, I was surrounded by renowned experts and other asbestos victims and survivors like myself. It is an amazing event that brings us together to share our experiences and learn about how we can help spread awareness and education about the disease and learn about new treatment options.

Below is a recap of each day that I was there as well as a 3 point recap of each day.

Tags: ADAO, Asbestos, Asbestos Exposure, Linda Reinstein, Mesothelioma

My surgery was scheduled for Thursday, February 2nd, 2006, at 7:30 a.m. Cameron and I arrived in Boston on the 31st of January to get settled in and get all the pre-op testing done. All of that was scheduled on Feb 1st. It was a whirlwind day.

Appointment with Dr. Sugarbaker first, then blood work and more tests at the diagnostic center, the EKG Lab, CT scan, x-rays and another appointment with Dr. Sugarbaker at the end of the day.

Tags: brigham and women's hospital, lungleavin' day, mesothelioma

As I lay in bed, wide awake, my mind reeling from the nights festivities, tears of gratitude rolled down my cheeks. I thought back over the last six years and how far we have come. From being alone, just Cams and me in the hospital, to now, a night surrounded by friends and family, all there to celebrate life.

Lungleavin’ day started as a way to cope, a fun way to commemorate a day that would change my life forever, but we chose to celebrate that day instead of mourn the loss. We celebrated all those that have bravely fought mesothelioma, brain cancer, breast cancer, leukemia, people we know who are no longer with us. We celebrated those who continue to fight, who at this moment are going through chemo, surgery, radiation, those who are in remission, and mostly we celebrate life.

Lungleavin Day was born out of necessity. It came about as a way to see light in a very dark time in our lives, and as way to conquer the fear that so often accompanies a cancer diagnosis. Below is the story of its origins and what it means to us today.

A Celebration of Life

My wonderfully imaginative sister coined the day I had my surgery to “Lungleavin Day” since it was the day my lung left. She and my husband Cameron were discussing, how, in a year from now, we would be celebrating the fact that my lung had left and the ideas started to flow. Since it was February and would be cold, we must have a bonfire, and there must be some sort of release or physical demonstration as we conquer fear. That is where the breaking of plates comes into play. The ritual is this- write your fears, worries and concerns on a plate in a sharpie marker, take this plate out to the bonfire, and hurl that sucker into the fire and smash it to pieces.

Tags: Lung Leavin' Day, Surviving Cancer

Our baby's first Christmas, 2005- It was supposed to be memorable, and it was, but for all the wrong reasons. We did everything we usually do; Christmas Eve with my husbands family, but despite the festive air of the season, no one could ignore the dark cloud hanging over us. To this day, when I decorate my Christmas tree and I put the "Baby's First Christmas" ornament on the tree, I do so with a bittersweet feeling.

Who Would Care for My Baby Girl?

We had just a month to prepare for the upcoming surgery, and iron out details... just a few small ones, like where were we going to stay in Boston while all this was going on? And who would take care of Lily? I was to be in Boston for at least a month, and bringing her with us was not an option. We could not care for both her and me at the same time. My husband's family offered to watch her and take turns, but that didn't set well with me.

Tags: brigham and women's hospital, international mesothelioma program, lungleavin day, mesothelioma

My entire life I have been accused of being the eternal optimist. It is a trait that has always served me well, but never in my wildest dreams did I ever think that being an optimist, would play a key part in my very survival.
 When I was diagnosed with on November 21st, 2005, just 3 months after my baby was born, my initial reaction, of course was shock and fear. But once my options were explained to me, my optimistic outlook kicked in full gear. I was given 3 options. I could do nothing, and live maybe 15 months. Undergo chemotherapy and radiation and hope for up to 5 years. Or, I could have a risky surgery called an extrapleural pneumonectomy and increase my chance of survival to 10 years or more. My husband and I immediately opted for the surgery. Dying was not an option.

A Radical Procedure, A Chance at Life

The surgery consisted of the removal of my left lung, the pleura, or lining around the lung (where the cancer originated), the lining of my heart, the 6th rib, and the left half my diaphragm. That, and the lining of my heart were replaced with surgical Gore-Tex ™. This lengthy surgical procedure also included intraoperative heated chemotherapy, a procedure in which a solution of a drug called cisplatin is heated to 140 degrees, pumped into your chest cavity and swirled around for an hour before being pumped back out, or as I like to call it; “the shake and bake.” This procedure is one of the many reasons I am alive.

It was December 5, 2005, we were on a plane to Boston. We had an appointment set for the following day to see Dr. David Sugarbaker and the International Mesothelioma program team at Brigham and Women’s Hospital. We were scheduled to be at the hospital early in the morning for an orientation with the team, followed by a slew of tests in the afternoon.

We checked in to the Longwood Inn guesthouse, a quaint victorian mansion with 22 rooms, a common dining room, sitting room and fully equipped kitchen. Most rooms, like ours, had private bathrooms, but some had to share. We were able to save a lot of money by staying there since it did have the kitchen where we could cook our own meals instead of going out to eat all the time. Money was very tight, so every little bit helped. Another bonus was that it was really close to the hospital. Our first night there, I didn’t sleep much. I emailed all our friends and family on a borrowed laptop, to let everyone know we made it ok. I didn’t know about such things as Carepages, or Caring Bridge at the time, so email was my lifeline to friends and family.

It was upon attending the Mesothelioma Applied Research Foundation’s annual Symposium on Malignant Mesothelioma back in June, that I first learned of Mesothelioma Awareness Day and the foundation’s plans to descend on New York City in September. As a survivor of the disease myself, the idea intrigued me but I didn’t really think it was going to be realistic for me to go.

The more I thought about it, the more the idea grew on me. Why not go? I would be with other mesothelioma patients, their loved ones, MARF staff, and Union members all there to bring about awareness for this disease. I called my mom, and she jumped at the chance to go and spend the weekend with me in NYC. So this way I wouldn’t be here alone. As the date grew nearer, airline and Broadway show tickets were bought and hotel reservations were made. We arrived in NYC on Saturday and had plans to see a couple of shows before getting together with The MARF staff and other participants.

Tags: Mesothelioma Applied Research Foundation, Mesothelioma Awareness Day, mesothelioma cure, New York

I spent the evening making phone calls to family, and friends. My parents live over 600 miles away, and upon hearing the news, made plans to be out here the next day. It’s at least a 10-hour drive, but they needed to be here. I needed them to be here. No matter how old you are, it seems like you always want your mom and dad when you are sick. It was a comfort to know they would be here.

I went to the hospital the next day early in the morning to have a CT assisted needle biopsy done. I once again walked the maze of hallways to the pre-op area. I had no idea what was ahead of me. I was led to a curtained-off bed, given a robe, a gown and some of those grip socks to keep my feet warm. I was informed about the procedure I was about to have, given paper work and post-op directions and waited until it was my turn to be wheeled into the room where the biopsy was to be done. I just remember being very nervous, talking a lot, and mostly thinking how surreal all this was.

Knowing that something was seriously wrong with me, I called our family physician to help me find an answer to the question that was haunting me; could I really have mesothelioma cancer?

We have a long history with Dr. Doyle. He has been our family doctor for years, and has known my husband since he was 20. He was ecstatic when we welcomed Lily into our lives, but when I made the appointment to see him about my symptoms he was quite worried.

Tags: biopsy, Mesothelioma cancer, mesothelioma symptoms, thoracentesis

August 4th, 2005, 3:00 a.m. I sat up to get out of bed to walk around after a couple of hours of fitful sleep.  We had already gone to the hospital earlier that day thinking THIS IS IT! SHE IS ON HER WAY!! Sadly, my contractions stopped once we got there and we were sent back home. As I stood up from the bed that night, all of the sudden, I felt a "pop" and a "whoosh"! My water broke! This was it! I yelled out to my husband, Cameron to hurry because our baby was coming.

Once we finally arrived at the hospital things began to move quickly. They checked me to make sure everything was okay and to make sure Lily was in the right position for delivery. Unfortunately, it was determined that she was frank breech. Delivering a baby who is a frank breech is extremely dangerous, not only for the child, but for the mother as well. Due to this, I was immediately scheduled to have cesarean section.  I remember saying in my happy, but drugged up stupor that I was glad because now I knew our baby would have a nice round head. This is how I think when I hear bad news. I have to remember that things could be much worse. I always find the bright side no matter what the situation may be! Lily Rose came into the world at 5:18 a.m. Out she came squawking like crazy, letting us know that she was here, and, dammit we would know it.