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