With Hope, The Odds Don’t Matter – Heather Von St. James

My whole future was planned out. My first baby was due soon, I planned on taking a short maternity leave and heading back to work as my job as a stylist and part owner in a busy salon. I booked my clients around my daughter’s birth and barring any unforeseen circumstances, it would all work out according to plan.

Heather Von Saint James

That is the funny thing about plans; they never quite seem to work out. I worked right up until my due date and of course, nothing happened. I ended up being induced and finally the contractions started. My baby girl, Lily Rose, made her way into this world via an emergency C-section due to the fact that she was a frank breech, meaning she was coming out butt first. My plan of an easy labor and delivery was a thing of the past in an instant. Thankfully, she was healthy and looked at the world like a skeptic. I said she was an old soul. She rarely cried unless she was hungry and took to breastfeeding like a champ. Everything seemed fine, except the nurse said something to me upon my discharge from the hospital; she told me I was a bit anemic and should up my meat intake.

They say hindsight is 20/20, and little did we know at the time that this symptom was a clue to something much more insidious going on in my body. After Lily’s birth, I never felt quite “right.” I started losing weight – a lot of weight – quickly. At this rate, I was losing five to seven pounds a week. I had a low-grade fever that would start every evening around 5 pm and last a couple of hours until I took some Tylenol. I was so tired, beyond tired. I called it bone weary, but I had just had a baby, and major surgery to bring her into the world, so many of the symptoms I was experiencing could be attributed to just being a new mom. It seemed as though a new symptom would pop up almost weekly.

I had to return to work as planned four weeks after Lily was born because I had clients scheduled. But every time I looked in the mirror, I saw a shadow of my former self staring back. I had lost thirty-five pounds. Since I had only gained five pounds during the whole pregnancy, that weight loss was more like sixty pounds. Due to the anemia getting worse, I was pale. In mid-October, it felt like a truck parked on my chest and I was having a hard time breathing. I thought I had a bad cold and just tried to power through it. I had returned to work full time. but as the days went by, I was utterly exhausted every minute of every day. I finally went to the doctor after passing out one morning. It scared me enough to finally admit I was not getting any better.

The doctor did some blood work to see what was going on. I was extremely anemic, almost to the point of needing a blood transfusion. He immediately put me on an iron supplement and told me to come back in a week if I wasn’t feeling better. I felt marginally better on the iron but was still having breathing issues. When I went back, he ordered more blood work and a chest x-ray. The x-ray revealed the reason for my shortness of breath: I had over a liter of fluid sitting on my lung. He made an appointment for me to go to the hospital that afternoon and get the fluid drained off in a procedure called a thoracentesis. In this procedure, they stick a long needle into your back and pull the fluid out. It is uncomfortable, to say the least. The pulmonologist who was doing it was concerned about the colour of the fluid and sent me to have a CT scan to figure out what was causing the fluid.  It was all so surreal.

As I waited in a small, cold room to hear what the CT scan revealed, I prayed harder than I ever prayed. I knew deep down that I had cancer. The doctor came into the room to tell me that the scan showed a mass in the lower left portion of my lung and I needed a biopsy to find out what it was. I asked him if it was a tumour, and he couldn’t answer. He simply wouldn’t know until after the biopsy. It could be a tumour or a blood clot he said, and told me I was scheduled the next day for a biopsy. As I waited for my husband to pick me up from the hospital, I stood in the vestibule and couldn’t hold back the tears. I saw all those plans I had made for my life dissolving before my eyes.

I got my diagnosis on November 21, 2005 at 1:30 pm. The doctor sat my husband and me down and told us the words we knew were coming. I had an alarming cancer called malignant pleural mesothelioma, a cancer caused by asbestos exposure. He let those words sink in, and it was what he said next that has stuck with me since. He told me through his own tears welling up in his eyes that if I didn’t do anything, I would probably be dead in 15 months. I tried to wrap my head around the fact that I may not live to see my baby girl turn two years old. This was not the answer I wanted, so we asked what the options were and he laid them out. Do nothing, die. Get chemo and possibly radiation, maybe live up to five years and then die, or have experimental surgery done and if I was lucky, live up to ten years or beyond. We chose the surgery.

My doctor told us of a surgeon named Dr. David Sugarbaker in Boston, some 1,400 miles away from our home in the Twin Cities of Minnesota. Without missing a beat, my husband said “Get us to Boston.” Twelve days later, we found ourselves sitting in a new patient orientation with two other families. The thing that struck me was the fact that I was easily thirty years younger than the next youngest patient in the room. At the time, I was one of the youngest patients to be diagnosed with the disease. That also gave me a better chance of survival because I learned that day just how invasive the surgery was.

I went through a battery of tests to see if I really had mesothelioma because Dr. Sugarbaker said, “You don’t have mesothelioma until I say you have mesothelioma.” In addition to a biopsy, I had heart tests, liver tests and every other test imaginable to make sure I was a good candidate for the surgery. I spent a couple of days in the hospital, was released and returned home to Minnesota to wait for the news. The final diagnosis came on December 22, that I had mesothelioma and I was a perfect candidate for the surgery. We scheduled surgery for February 2, 2006, which gave my family time to arrange for my parents to take our now six-month-old baby girl to live with them while my husband and I were in Boston.

As we flew to Boston, I tried my best to stay positive, but the odds of what I was up against weighed heavily on my mind. With the severely low survival rate for mesothelioma, most people die within 18 months of diagnosis, even with surgical intervention. The rate drops even lower for people to reach five years. I tried not to dwell on this and instead turned my thoughts to the fact that people do survive this and I was going to be one of them.

Heather Von Saint James

The surgery I was about to have is nicknamed “The Big One” for the simple fact it is such an enormous undertaking. The procedure included the removal of my entire left lung, the lining of the lung or pleura where the tumour was located, the left half of my diaphragm, the lining of my heart, and a rib. During the surgery, they also did a heated chemo wash where cisplatin is heated to 140 degrees, pumped into the chest cavity and washed around for an hour, then pumped back out. The lining of the heart and the diaphragm are then replaced with surgical Gore-Tex. Lastly everything is sewed back up, and off to recovery I went. The surgery took almost eight hours. We now refer to February 2 as Lungleavin’ Day: the day my lung left.

I’m happy to say the procedure worked. They were able to remove all the cancer. I had a few complications after surgery, which cleared up on their own. Finally, after 18 days in the hospital and a month in Boston, I was able to return home to see my baby girl for the first time in over a month. It was thoughts of her that kept me going through those hard nights when the pain was excruciating or when I felt like I wanted to give up. Picturing her little face with her big eyes made my resolve to beat this even stronger. I watched my baby grow through her 6th month by grainy photos my mom emailed me every day. This was before the days of smart phones, Facebook or widely available Wi-Fi. These photos were my lifeline.

Since I had a long recovery ahead of me, and taking care of Lily on my own was not possible, we arranged for me to return to my parent’s home in South Dakota, 600 miles away from my home in Minnesota, to recover so Lily and I could be together. My husband had to keep working because life doesn’t stop because of a cancer diagnosis. Bills still need to be paid, and pets taken care of, so he stayed in Minnesota while I recovered for the next two months. I finally returned to our home at the end of April and was scheduled to start chemotherapy the next week. The next leg of my journey was starting. Luckily, I was able to do chemo and radiation in Minnesota and not Boston, which made things so much better. I had four sessions of chemo, weeks apart, followed up with radiation, and in the midst of everything, my baby girl celebrated her first birthday.

It was almost a year to the date of my diagnosis when I finished everything. On my last day of radiation, they gave me a certificate of completion. Everyone cheered and I left to go out to my car. I sat in my car, looked at this silly certificate of completion and started to cry. Hot tears of anger, tears of relief, and simply just tears of being overwhelmed with the fact that treatment was done. Now what? My life I had before cancer was essentially over. I could not return to the salon and work around all those chemicals or stand ten hours a day like I had before. I had no job to return to, I still felt like crap from all the treatments, and had no idea what the future held. I felt like I was standing on a precipice and could fall off at any minute. I finished crying, wiped my tears away and drove home to my little girl.

Heather Von Saint James with Doctor Sugarbaker

It is funny how things work out. I still remember that feeling like it was yesterday: the unknown, looming ahead of you like an insurmountable obstacle. But instead of trying to go over it, I  found a way around it. I found my purpose again, and after a few months of recovery, I finally started to feel somewhat normal. I found more patients who had been going through what I had and connected with them. I started blogging about my experience at the Mesothelioma Cancer Alliance and meeting people in the mesothelioma and cancer community.

I started advocating for other patients and helping them through the rough spots, because I didn’t want anyone to feel alone like I had. I started learning about the dangers of asbestos and, to my horror, found out it was not banned in the United States. I started volunteering with nonprofits to get asbestos banned, and to bring more awareness about mesothelioma. Without even realizing it, I created a new future and made new plans. They look nothing like what they had before cancer, but I am sure happy with the way things are going.

Cancer may have taken away one scenario for my life, but a whole new world with amazing people has opened up in its place, and for that I am so grateful. Now, despite any lingering health issues or limitations, I am so thankful for each and every day that I have been given. That original diagnosis happened almost twelve years ago and I outlived that initial prognosis. I still go to the doctor every six months to stay on top of things. I’m not so naive that I think the cancer will never come back; not enough is known about mesothelioma because long-term survivors like me are few and far between. I live my life very much in the moment and at the same time I hope to leave a lasting legacy for the future.

Have I made new plans for the future? Absolutely, but this time, I’m a lot more flexible about change. Live for today, plan for tomorrow and just enjoy life… that is how I live now.

Heather’s goal is to continue to be a beacon of hope for those suffering with mesothelioma. She continues to speak on behalf of the International Mesothelioma Program and Dr. David Sugarbaker.