Monday, October 24, 2016

Holding on to Faith in the Face of Mesothelioma



Heather Von St. James is a 10 year Mesothelioma survivor. Mesothelioma is extremely aggressive and has a long latency period. It usually goes undetected until it is in an advanced stage, one of the reasons that most patients only make it a year or two past the diagnosis. This is Heather's story.

I was a busy salon owner and stylist in a salon/day spa. Married to the love of my life for six years, we finally decided it was time to start a family.

I was 35 when we decided to start a family, and we were fortunate, it only took a few months of trying before we were successful. I had been on birth control pills for part of the 6 years, but started to use the rhythm method.

I had just become a new mom when I was diagnosed with mesothelioma. I first suspected something was wrong because I only gained 5 pounds throughout the whole pregnancy.

Lily was a healthy 8 lbs 14 oz. Perfectly perfect.  My doctor was not concerned about my lack of weight gain because I was heavy to begin with. I weighed 230 lbs when I had her, so my doctor just chalked up the lack of weight gain to eating better and keeping active.

After I had Lily, I started losing weight. A lot of weight. 5 pounds a week. I started having issues with my breathing. I was short of breath all the time. It felt like a truck parked on my chest, and my energy level was extremely low. I could hardly get out of bed in the morning.

I chalked much of this up to postpartum issues, but when I started having a low grade fever every day, I knew there was something more going on. I was one of the lucky ones. My doctor knew something was amiss and would not give up until he had answers.

I got my official diagnosis just two weeks after the first initial appointment with him. I knew diagnosis took time, and I had no choice but to wait.

My family was with me and I kept busy with Lily.  My biggest fear was dying and leaving Lily.  Not raising her. Her not knowing who her mom was… that scared me the most.

After the diagnosis, I had to quit my job and sell my portion of the salon that I co-owned. My life went from being full of happy thoughts about the future and full of innocence to the foundation being torn out beneath me. Nothing was certain anymore.

I will always have to deal with the idea of the cancer coming back. Everything had to be rethought. Things that used to matter didn’t matter as much anymore. What I thought my future would be like crumbled.

I am happy to say that I’ve survived more than 10 years since that diagnosis. I made mesothelioma awareness and patient advocacy a priority in my life, and am so very blessed to lead the life I lead. I may not have my salon career anymore, but I’m making a difference in people’s lives.

The diagnosis completely changed my priorities. I don’t sweat the small things anymore. I will choose doing something fun with my kid over housework or anything else. I live in the moment because, frankly, I don’t know how long I will be around.

My approach to relationships has changed as well. I no longer have trouble cutting toxic people out of my life. It is a matter of health for me. I learned to say no to people who used me and learned to take care of myself.

My faith life has become more real. God is a partner in my life, not some big omnipotent being that holds the puppet strings. He is with me in this life to support and love me. That is what I’ve come to know.

My family is much closer, and we depend on one another for many things. I could not have made it through those first years without them. My immediate family of Cams, Lily, and me is great. I love it. We are working through this crazy life together, and we both approach raising Lily differently now. She is turning into an amazing kid.

Before the cancer, our relationship was good, but after it gave us a new urgency to spend time together.  We don’t take each other for granted anymore.

Intimacy between my husband and I started to suffer even before the diagnosis. During pregnancy, I could not stand to be touched. Then after surgery it got even worse. Going through extensive surgery, then chemo, followed by radiation, totally killed any semblance of a sex life. It was a rough year or two, but slowly but surely, things got better. 

I would say we still had intimacy, but not the sexual kind. it was deeper than that.  Through the cancer, we were able to connect on a totally deeper level. Everything had been stripped away and we had to rely on one another. It wasn’t easy, but we were able to communicate and talk through a lot. Things are still not 100%, but it’s something we always work at.

The hardest part about the fight against cancer was losing the people I thought were my friends. The very people I thought would be by my side through thick and thin were nowhere when I got my diagnosis. They deserted me, as if cancer were contagious and they would get it by being around me.

When I would call or reach out to them, I was treated with such coldness and scorn. It was devastating. Sadly, this has happened to almost every cancer patient I know.

I didn’t join a support group during my actual treatment phase. Mesothelioma is so rare that finding a group was hard. Patients are spread out all across the world.

A few years into my survivorship journey, I found out about The Mesothelioma Applied Research Foundation and their support groups. Throughout the last few years, with the introduction of Facebook and social media, there are now online support groups. But I act in more of the advocate role than the patient now. Heather can be reached at heathervsj@mesothelioma.com

To someone who has just been diagnosed, I would say:
1)    Don’t be afraid to ask for another opinion.
2)    Find a medical team you trust and can work with and a specialist for your type of cancer or disease. It can mean the difference between life and death.
3)    Don’t be afraid to ask for help. You need your family and support system more than ever.


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