life coach for women, midlife, empty nest, coach, next act, coaching for women
13
Feb
2017

Advocating for Mesothelioma Awareness: Heather’s Story

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Shortly after her daughter was born, Heather was diagnosed with mesothelioma. Now 11 years cancer-free, she has made it her mission to raise awareness of this deadly disease.

 

Tell us a little about your background…

I grew up in a small town in The Black Hills of South Dakota called Spearfish, which has a population of about 8000 people and is home to a small liberal arts university. My mom and dad moved us there when I was in kindergarten, so I don’t remember much before that. I have only one sister who is 4 ½ years older than I am. I graduated high school in 1987, took a year off and was a nanny on the east coast before I decided to go back home and give college a try. After a few years, I decided a regular college was not for me and enrolled in cosmetology school.

Our wedding day, 1999

I loved doing hair. I not only worked in a salon but was an educator for Redken, a color and product company. That job was what brought me to Minneapolis/St Paul, where I still live today. I met my husband, Cameron, shortly after moving here and we got married a short 10 months after. We knew it was right the first night we met. We decided to hold off on starting a family while I pursued my career; I eventually became part owner of the salon I worked in. After two years, we decided it was time to try and get pregnant, after all, I wasn’t getting any younger! Lily was born a little over a year later, on August 5, 2006. I was 36 years old.

After I had Lily, I started to experience some puzzling symptoms. I was losing an extreme amount of weight, and looking back, I had only gained 5 pounds during the whole pregnancy, so that was concerning. I had a low-grade fever that lasted a few hours every evening and I was beyond tired. I was bone weary, that is the only way I can explain it. I was also anemic and had been since my release from the hospital when I had given birth to Lily.

Then in mid-October, it felt like a truck was parked on my chest, I was having trouble breathing and would get out of breath after the smallest of exertions. Many of the symptoms I had were chalked up to being postpartum; I never dreamt it could be anything worse. Only after a very frightening incident—I had gotten a load of laundry up from our basement after I had put Lily in her swing, then sat on the couch and passed out for over an hour—that I knew something was seriously wrong.

Baby Lily

 When did you start to think about making a change in midlife?

November 21, 2005 is the day the bottom dropped out of my world. I was diagnosed with malignant pleural mesothelioma, a deadly cancer that is almost always caused by asbestos exposure. I was exposed to asbestos as a child when my father worked with it and brought it home on his clothing. I remember wearing his dust-covered jacket to do my outside chores. I would grab his dirty coat to go feed our rabbits, rake leaves, or even just to go grab the mail. His coat always hung on the doorknob in our entry. I’d also run errand with him in his car, which was just as dusty as his coat.

My dad did construction, drywall sanding and clean up, and that joint compound had asbestos in it. He also did a lot of demolition, tearing apart old boilers that were covered in asbestos insulation, which meant he worked with a lot of it. Sadly, he died almost three years ago due to renal carcinoma, which can also be caused by asbestos exposure.

When I was diagnosed with mesothelioma, I was given just 15 months to live if I didn’t do anything. My baby was just 3½ months old and now I may not live to see her second birthday, my doctor told me with tears in his eyes. But he was prepared with a list of options for us. I could do chemotherapy and radiation, hope it would halt the cancer, and maybe give me five years, or try an experimental surgery, assuming I was a candidate, that consisted of removing my entire left lung where the cancer was. It would be performed by the best pleural mesothelioma surgeon in the world, Dr. David Sugarbaker, located in Boston at Brigham and Women’s Hospital. Without hesitation, my husband said “Get us to Boston.”

After surgery, Feb 2, 2006

Facing a potentially life-ending diagnosis and dangerous treatment will change you on a foundational level. I lost my career, my salon, and many people who I thought were friends. The early days of my cancer battle were incredibly isolating, terrifying, but at the same time, life altering.

When I was diagnosed, I did what anyone would do. I went online and read up on what I was up against. Boy was that a bad idea. In all my reading, I learned that most mesothelioma patients didn’t make it past 18 months and that the 5-year survival rate was less than 2%.

Just let that sink in for a minute. You have a new baby. You just found out you probably won’t make it to see her second birthday, and the chances of seeing her turn five and go to Kindergarten are even worse.

I had to put everything I’d read aside and get it into my head that these are just statistics and that from the minute I was diagnosed I skewed the statistics. For one, I was about 35-40 years YOUNGER than the average mesothelioma patient. Second, I was otherwise healthy. I HAD to beat it.

Cancer in and of itself is isolating. People don’t know how to act around you. The people I had worked with all but pushed me out the door. I felt very little support from those who I thought would help me the most. Instead, I felt like a burden and a pariah.

After my diagnosis, I went into the salon that I had been part-owner of to gather my belongings and tools that I had bought throughout the years, only to discover they had cleaned out my station and let everyone claim them. I had to go around to everyone’s station and get back the hundreds of dollars of tools that people had claimed. I felt not only unwanted, but as thought they’d already written me off for dead. Who does that to someone? I quickly sold off my share in the salon and have not had contact with many people from there since.

To be honest, having the people I thought were friends turn their backs on me hurt more than getting diagnosed with cancer. I didn’t have many friends outside of my work friends, so I felt really alone. Thankfully, my clients stepped up. I had the best clients in the world. One of them paid my car payments for two months; another came over every week and cleaned my house. I found out who my true friends were and who really cared about me.

in ICU after the surgery

On the other hand, support from my husband and my families could not have been better. I have two sisters-in-law who live nearby in the Minneapolis metro area and they were there for us at a moment’s notice. My mother-in-law, Lois, would make meals and bring them over to us. My sister-in-law Debbie, who’s also Lily’s Godmother, would take Lily overnight every Friday or Saturday while I was going through treatment, to give my husband a break from his caregiving duties. My sister-in-law Karen was always available during the day to watch Lily when urgent medical issues came up, like the time I needed a transfusion.

Our families also banded together with my clients to put on a benefit for us. They all worked to make things easier for us during a tumultuous time. My cancer diagnosis brought us all closer together as a family, both on my and on Cameron’s side. We know what is important, and we are there for each other when it matters. It’s so good to know I can count on them when I need them and I’m happy to help them too, as the need arises.

My husband was my rock through this whole thing. Even though the possibility of losing his wife and being a single parent was very real, he never let that grief take over. I was pretty self-sufficient during treatment and could take care of myself ok, but where he was invaluable was his help with Lily. There were times during chemo when I literally could not get out of bed, so tending to an 8-month old was nearly impossible.

Cam, my rock

When I was done with treatment, Cameron when back to school to get his degree so he could get a better job, knowing full well I would not be able to return back to work. He worked full time while also going to school full time for two years, and graduated with honors. His schedule was brutal. He would get up at 6am, drive a delivery truck all day, go to school at night, study until 1 or 2am, then wake up and do it all over again. He got a job working in IT at US Bank before he even graduated and has been there for six years now and loves his career. So my diagnosis was not only the catalyst for my next act, but for his as well.

I decided not to concentrate on the hurt. I had a much bigger battle on my hands. I had no time for petty people or people who would not support me. I held my head high and put my energy into what mattered, my health and my daughter. My daughter is what got me through the really hard times. Just looking at this sweet innocent baby who was born into this mess and didn’t deserve any of this was my entire reason to fight and rise above. I refuse to play the victim.

My “aha moment” came when I realized I didn’t want anyone to feel the way I felt. If it meant personally reaching out to every newly diagnosed mesothelioma patient, then so be it. I NEEDED people to know they were not in this alone.

With Lily during recovery

 

What is your next act?

I am an advocate for the prevention and treatment of mesothelioma cancer.

I am a patient advocate: a mentor, sounding board, supporter. When someone is diagnosed with mesothelioma, they usually go online and find, like I did, all bad things and very little hope. I wanted to be that beacon of hope in a sea of despair.

It started simply with talking to other patients every time I returned to Boston to see my surgeon for checkups, a trip that will take place regularly twice a year for the rest of my life. After Dr Sugarbaker started telling journalists who reached out to him about me, news stories started cropping up on Reuters and the local newspaper.

However, what really launched my advocacy was meeting a woman by the name of Linda Reinstein at a mesothelioma conference, about four years after my diagnosis. She and I clicked right away. She had lost her husband to mesothelioma a couple of years earlier. They had started a nonprofit called The Asbestos Disease Awareness Organization. She invited me to speak at their annual conference the next year.

Speaking at Senator Franken 2016 event to raise awareness about asbestos

After that, things just started to roll. I was approached by The Mesothelioma Cancer Alliance to be an advocate and blogger for them and I couldn’t say no. The blog has been hugely successful and reaches far and wide. The blogging community has been instrumental in getting the word out and helping me raise awareness. It’s been an amazing journey and my life has been enriched by the incredible people I’ve been able to meet as a result of this.

By sharing my story, blogging, and telling patients and their families that there are treatments that are helping patients with mesothelioma live longer, I give them that bit of hope that they so desperately need. I am available to talk to anyone and help anyone who finds themselves facing a mesothelioma diagnosis. There aren’t many people who are willing to put themselves out there for that purpose. I also serve as a conduit for information; I’ve learned a thing or two in the 11 years since my diagnosis and if my experience can help someone, then I’m doing the right thing.

I help point people to the Mesothelioma Applied Research Foundation so they can understand all their options. I DON’T offer medical advice as I am not medically trained, but advice from someone who’s been through something similar always helps.

Speaking at the 2016 ADAO conference

 

Can you tell us more about mesothelioma?

Mesothelioma is a cancer of the lining of the organs, of the mesothelium. There are three types: pleural (my diagnosis) which affects the lung; peritoneal, which affects the abdomen; and pericardial, which affects the heart. There is even a rarer subtype that affects only men and is found in the testicles.

Mesothelioma is almost always caused by asbestos exposure and has a latency period anywhere between 10 and 50 years. It’s a very rare cancer, with only about 3,000 people a year diagnosed in the US. Most people, upon diagnosis, are given mere months to live and are told to go home and get their affairs in order. The prognosis is poor, with most patients not making it past 18 months, or certainly beyond 5 years.

Many doctors don’t understand mesothelioma and therefore don’t know how to treat it. The best thing to do is seek out a specialist who knows how to treat the disease. That is who I credit with saving my life, my surgeon, mesothelioma specialist Dr. David Sugarbaker, who’s now at The Lung Institute at Baylor in Houston, TX.

Treatment varies depending on the type, but surgery is the main way people usually deal with it, along with chemotherapy and sometimes radiation. Treatments vary depending on the severity of the disease and whether the cancer has metastasized (spread to other places in the body). Immunotherapy is now being used as well in many clinical trials. Different treatment centers will gear treatment for each specific case; it is not a one-size-fits-all treatment plan.

 

Why did you choose this next act?

I’d say it chose me. I knew I wanted to help people, I just didn’t know how to go about doing it. Situations presented themselves to me and I jumped at them every time they came my way. It has not always been easy. I have to constantly relive those days of my diagnosis and the most uncertain time of my life, but when I do, it empowers me and takes the fear away. I didn’t know that this is what I was going to do—it was not a conscious decision to take it as far as I have—but I feel like there is so much more to do. I would love to do more public speaking and more fundraising. So many things to do! 

Kayaking for Meso, 2016

 

How hard was it to take the plunge?

Taking the plunge into advocacy and being an activist just feels RIGHT. A person’s story is powerful, especially stories of overcoming obstacles. I feel that my story can inspire others to think “If she could do it, I can too.”  I didn’t prepare for it; as I said before, the opportunities presented themselves and I took them. I still feel like there is so much more to do. I just know how I felt in those early years after my diagnosis and how I felt during treatment, I don’t want anyone to feel that loneliness and abandonment that I felt. Nothing like personally living it to prepare you for something!

 

Tell us about your challenges.

I try not to dwell on those. I have health challenges. Cancer treatment changes you. I don’t have the stamina I used to have. Chemo affected my brain in a way I never thought. I tend to be forgetful and have a hard time staying on task. It’s very similar to ADD and I recently started taking Adderall to help with the “chemo brain.”

I have to be careful of what I eat, how I eat, and when I eat because of stomach and esophageal issues due to my radiation treatments. I’ve lost most of the feeling in my left hand and don’t sweat on my left side anymore due to the surgery. There are all minor inconveniences, though, because I am still alive and well!

When you are involved in the cancer community, you are immediately thrust into a world of uncertainty and constant reminders of how fragile life is. People die. Sometime I lose three or four people I know in a week. Some hit me hard, but it doesn’t change the fact that cancer is an ugly ugly disease.

With Lily during my treatment

I lost my own dad to cancer. I watched him change from a health vibrant man to a mere shell. I held his hand as he passed, after we told him it was ok to go. It was one of the most humbling things I’ve ever been through. That is the ultimate in trust, to let another human take care of you in your most vulnerable state. I’ve been fortunate to be there for a few people near the end of their lives and it is something that changes you on a visceral level. I have a very different relationship with death than I did 10 years ago. It used to scare me, now I see it as part of the circle of life, something greater than you or me.

There are times when it gets to be so incredibly overwhelming. The stories are heartbreaking and the stark reality of being a patient advocate is that people die. Mesothelioma is particularly brutal; this cancer wreaks havoc on your body and you are a shadow of your former self.

I’ve lost more friends than I can count. There are weeks when our mesothelioma community loses 3-5 people. It’s devastating and my heart just shatters every time it happens. I’ve had to take time to take a step back, mourn my losses and recover. But I get up, dust myself off, dry my tears and jump back in. It is those losses that keep me going, as strange as it sounds. I feel like I need to be their voice.

With fellow advocates and women who’ve lost family members to mesothelioma, 2016

The patients’ loved ones are the biggest supporters I have. It’s incredible, really, when you think about it. These people have lost someone so dear to them, whether it be a husband, wife, mother, sister, or brother, but they tell me that they are proud of me. I love to hear the stories of their loved ones, who they were, what they were like. See, I only get to know the people when crisis strikes, after the diagnosis and not before. They are more than a cancer diagnosis. They lived full lives and now we are left with their memories.

The mesothelioma community is incredible and it is those relationships that I’ve built in my 11 years that keep me fighting. In the beginning, though, it was all about my baby girl and my husband. I was not going to give up for them, but the emotions got pretty raw in those dark hours in the middle of the night after I was diagnosed. I couldn’t sleep so I would get out of bed and go into my baby’s nursery. I would watch her sleeping by the glow of the nightlight and vow to fight for her. The tears would silently fall as I thought how unfair it was to her. She didn’t deserve to have a sick mommy; she needed me. That right there was 100% my reason to keep going. She just turned 11 this last August, and I am just in awe of the person she is becoming.

My family, 2016

 

What did you learn about yourself through this process?

Wow, where do I start? I learned I was stronger than I ever thought I could be. So many people tell me how brave I am, and I sometimes don’t know how to take that. I don’t think I was brave. I didn’t choose to get cancer. I had to fight, I had to live to raise my daughter. I don’t know if that is bravery or just stubbornness.

I learned that the desire to help people feel good about themselves when I was doing hair, crossed over into my advocacy work and that desire is even more ingrained than before. I learned that I have a voice and that I can use it to bring about change. I’ve learned that having faith is instrumental. For me, it is faith in God, faith in my medical team and most of all, faith in myself. I love that.

 

Looking back, is there anything you’d have done differently?

Honestly? No. Being diagnosed with cancer was all at once the worst thing that ever happened to me, and the best. It made me who I am today. The people I’ve met since are some of the most amazing people and we connect on a deeper level because of what I’ve been through. There is so much more I want to do that I don’t waste my time thinking of the “what ifs.”  My life is what it is because of what happened to me and the way I chose to react to it. I’ve never played the victim, and never asked “Why Me?” Instead, I took the position of why NOT me? I’m a fighter, I come from a long line of strong, independent women and I draw on that strength to move forward.

 

What advice do you have for women seeking reinvention in midlife?

Ask yourself what is the worst that can happen? In my case, quite honestly, the answer was that I could die. I thought long and hard about that. So, if I do die, I want to leave a legacy. That gave me the courage to pursue this. For most people, reinvention is something incredibly scary. Find people who inspire you, people who have done something you admire, or have taken something awful and turned it around.

There is an author and speaker whom I admire greatly; her name is Glennon Doyle Melton. I was listening to Minnesota Public Radio and she was talking about her life and series of choices and circumstances that brought her to where she is. She says to run TO that which frightens you. Embrace it. I LOVE that! How often do we let our fears take hold and blow things out of proportion? If you face those fears it takes their power away, and lets you conquer them!

This is the whole premise behind our Lung Leavin’ Day celebration we have every year near the anniversary of my surgery, when I lost my lung on February 2, 2006. We write our fears on a plate in sharpie marker and smash those plates in a bonfire in our back yard. In Minnesota. In February! It’s a tradition shared by 100 or so of our closest friends. So, run TO that which scares you and conquer it.

Lung Leavin’ Day, 2013

 

What advice do you have for those interested in pursuing advocacy?

Draw on your personal experience. Speak from the heart and take chances. Advocacy is an intensely personal journey. It is born out of a desire to right that which is wrong, or to help others. It is incredibly rewarding but at the same time really hard. You need to be prepared to have your heart broken and to celebrate. Blogging? Well that is pretty easy, sit and write! Ok, easy may be pushing it. Having a love of writing helps, as does a topic or lifestyle that you want to share. Many blogs have started out simply as a way to document a journey for their kid and it grows into something much larger. That choice is up to you, as to how much time and energy you want to commit to it.

With Dr. Sugarbaker, 2015

 

If someone wants to learn more about mesothelioma, how would she do that?

The Mesothelioma Cancer Alliance

My blog on that same site: www.mesothelioma.com/heather

The Mesothelioma Applied Research Foundation

The Asbestos Disease Awareness Organization

Imerman Angels (a cancer patient mentoring organization)

I Had Cancer

 

What other resources would you like to share?

I like inspirational women. Women who overcome, who do things on their terms, despite what people say. These women are strong beyond what they imagined.

Jill Smokler of Scary Mommy: She took a funny web page and turned it into a movement.

Glennon Doyle Melton of Momastery and her new book, Carry On, Warrior: The Power of Embracing Your Messy, Beautiful Life.

The Bloggess, Jenny Lawson, who speaks often about mental illness—bravo! She has three books out: Let’s Pretend This Never Happened: A Mostly True Memoir, Furiously Happy: A Funny Book About Horrible Things, and You Are Here: An Owner’s Manual for Dangerous Minds.

Jo Hilder, a friend and author from Australia, who is a cancer survivor as well. She has written two books about cancer: Soul Letters for the Cancer Sojourner and Things Not To Say To Someone Who Has Cancer.

Luvvie Ajayi, who started The Red Pump Project, a nonprofit raising awareness about the impact of HIV/AIDS on women and girls.

 

What’s next for you? Do you think you have another next act in your future?

I hope to write a book about my journey. We shall see if that comes to fruition. I would also love to be an inspirational or motivational speaker. TEDX! That is my bliss.

 

Contact Heather Von St. James at heathervsj@gmail.com

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Twitter: @HeatherVSJ

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