True Story: I Was Given 15 Months To Live – 9 Years Ago

I have mesothelioma
Tell us a bit about yourself!
My name is Heather Von St. James and I’m from Roseville, MN, a suburb of Minneapolis/ St Paul. I am 46 years old, mother to my 10-year-old daughter Lily, and married to my best friend, Cameron. We love spending time together as a family, camping, boating, stand up paddle boarding and in the winter we love to ski.

I was a salon owner and hairdresser until I got sick, and I started blogging about my experience a few years ago in an effort to educate people about mesothelioma and the dangers of asbestos. It has become my mission to inspire others and give them hope when they find themselves in the same situation I did 10 years ago upon my diagnosis.

For those of us who don’t know, what is mesothelioma?
Mesothelioma is a cancer of the lining of your organs and there are three main types. Pleural, the lining of the lung, peritoneal, the lining of the abdomen, and pericardial, the lining of the heart. It is almost always caused by asbestos, and has a 10-40 year latency period from time of exposure to onset of illness. Most people only live 15-24 months after a mesothelioma diagnosis.

Do your doctors know how you got it?
Mesothelioma is almost always caused by asbestos exposure, so through a series of questions, we figured out that the exposure happened when was a child. My dad worked construction and worked with asbestos quite often, it was the fibers carried home on his clothes that caused my cancer.

How long did you feel ill before you went to the doctor?
Lily, my daughter was only 3 1/2 months old when I was diagnosed. I only gained five pounds throughout the entire pregnancy, which, in hindsight, was a red flag but we chalked it up to healthier eating. Plus I was heavier, so my doctor didn’t think much of it. I was extremely fatigued, but we assumed it was because of pregnancy and working 50+ hours a week standing behind a chair doing hair.

After I had her I started losing a lot of weight quickly, but we attributed it to breastfeeding. As a matter of fact, almost all my symptoms could be explained by being postpartum. I’m so thankful my family doctor would not take that for an answer and kept looking for a reason. I only felt really bad for about a week before I went to the doctor but I knew, deep down, there was something wrong.

Did you change the way you approached your day-to-day life when you got the 15-month life expectancy diagnosis?
I took an immediate leave of absence from my job, and surrounded myself with family and positivity. I stopped wearing the color black. I associated black with death, and I would only speak of life, surviving and living. I really tried to live in the moment and stay positive. I also didn’t keep things in, I talked about it and spent a much time with my baby as I could. I spent a lot of time praying…begging God to not take me away from my baby.

How did you feel at month 16?
I felt GREAT! 18 months post surgery, my husband and I went on a cruise to Alaska to celebrate. The one thing I remember distinctly was renewing my driver’s license. I got a new one in 2006, right before my birthday, a month before my lifesaving surgery. Four years later, I happily went to the DMV and celebrated the fact that I was still here to renew it, the whole DMV applauded.

We actually celebrate the day I had my surgery every year. We renamed February 2nd Lungleavin’ Day, the day my lung left, and we have a big party with friends and family every year on the first Saturday of February to commemorate the start of my new life.

Who/what do you credit for your survival?
My medical team whose fast diagnosis got me to the specialist who saved my life, Dr David Sugarbaker. He pioneered the procedure called an extra pleural pneumonectomy in the treatment of mesothelioma. It includes the removal of the lung, the lining of the lung, half of the diaphragm, the lining of the heart and a rib or two. During the surgery, they flooded the chest cavity with heated chemotherapy, in order to kill off any errant cancer cells.

I really believe that this procedure is why I’m still here. My faith, a positive attitude, and being just plain stubborn don’t hurt either.

What does your daily life look like now?
I have a very full and satisfying life. Although I was not able to go back to work in the salon due to the loss of my lung, I’ve made the best of the situation. I started blogging and sharing my experiences with others in hopes that they don’t have to go through it alone. I’m a patient advocate, I do public speaking and lobby Congress in Washington DC for a total ban on asbestos. Mesothelioma is still so rare no one knows about it, and it’s my mission to make people aware and educate them about the dangers of asbestos.

When I’m not doing that, I’m a stay at home mom. I’m probably not as healthy as I could be if I exercised more and ate better, but I love living my life. I eat what I want, when I want, and live in the moment. I go to see my surgeon every six months to stay on top of things, and so far every scan has come back clear and no evidence of disease. So I consider myself healthy.

I still have chronic pain from the massive surgery, and the pain medication to alleviate that, I also had lingering stomach issues from the radiation. These days I simply listen to my body and try to stay feeling good. I have good days, great days, and days when I just want to stay in bed.

A few years ago, I started having anxiety and after finding a great therapist,  I was told I have PTSD. She has been instrumental in helping me deal with all the emotions that come with being a long term cancer survivor. She has helped me realize that what I’m going through is normal, and through her I’ve been able to help others in the same situation.

What surprised you about this experience?
So many friends stopped calling or coming around after I got sick. The people I thought would be there for me, weren’t, and people I never expected to be there have become like family. A cancer diagnosis brings out the best and worst in others, I think that surprised me more than anything.

What’s one thing you learned from this that any of us could apply to our daily lives?
You are your own best advocate. So many people forget that they are still in control of the whole thing when it all feels so out of control. When thing get overwhelming, I always think of what my mom says.. “How do you eat An elephant? One bite at a time.” Take life and all it throws at you bit by bit, and you won’t feel like you’re drowning.

Thanks so much for sharing your story, Heather! Do you have have any questions for her?

P.S. How to get serious about your health

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5 Comments

  1. Amy

    Wow, what an incredible story. I love how much positivity comes through from your words.

    As a side note, I know it’s not the point of this story but I love the name Dr Sugarbaker – how fantastic a surname would that be to have!

    Reply
  2. Danielle

    Thank you for this interview. It’s so nice to see that there is hope out there and that a diagnosis doesn’t mean death. In my experience in the last 2 years (mom and mother in law died) cancer = death, and I’ve been terrified about who it’s coming for next. Thank you for showing me that there is positivity through Heather’s story

    Reply
    • Sarah Von Bargen

      Thanks so much for reading and commenting, Danielle. Keeping your family in my thoughts today <3

      Reply
  3. Nissa Kendall

    Thank you for sharing. I’ve had a cough for 10+ years that no one can figure out. My dad worked in construction and maintenance when I was a kid and I went with him often (besides being exposed to him and his clothes daily). I don’t have the weight loss symptom, but I’ll consider this as an option as we try to find the source of the cough.

    I’m so glad you are doing well now and staying strong. Thanks for sharing, and by doing so, you can help others! Love your outlook. 🙂

    Reply
  4. Bridget

    I loved reading your story. It gives me hope. My husband was diagnosed with pleural mesothelioma two years and three months ago. He was told he is too old for that surgery you had. He is still here with me, though a lot weaker than previously. I hope you both set records for surviving!

    Reply

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