Imagine you were a new mom. Your baby girl was three months old. You’re nursing, changing her diapers, seeing her smile for the first time. You were bonding, loving spending the time with her, looking forward to watching her grow up.
But something is nagging you. You feel tired. Breathless. You put it down to post-partum depression and birth recovery but it doesn’t get better. One day, it is so bad, you can no longer tell yourself that it is nothing, so you go to the doctor. And you get a diagnosis.
Cancer. Contracted from the asbestos your father brought home from work on his boots, his clothes, his hands, when you were little.
How would you feel? Everything you expected would happen, looked forward to, suddenly thrown up in the air likes leaves, swirling around in the wind. Who knows where they would land? Would you even see them land?
This happened to Heather Von St James. When her daughter, Lily, was three months old she was diagnosed with mesothelioma, a rare form of cancer caused by asbestos exposure. She was given three treatment options: Do nothing and live only another 15 months; undergo conventional chemotherapy and radiation treatment with an expectation of living another 5 years; or undergo surgery to remove the affected lung, pleura, diaphragm and pericardium. This final option was the riskiest but also held the most promise – 10 years or more.
And that was the option she took.
It involved leaving her baby while she traveled for surgery and recovered, but six and half years later, Heather has defied expectations and is still watching her baby girl grow up, supported by her husband and close family.
I like to think I am a warrior woman as I fly around the globe in my trusty van, defying the odds and bringing up humanity. But I realize I am but the equivalent of a child play-fighting by comparison to women like Heather. When she approached me about featuring her story, I was humbled to have the chance to do so.
I asked Heather a few questions. And I wanted to share her answers with you. She informs, inspires, she teaches. There’s a lot we can learn from warrior women like Heather.
Heather, many of us wonder about what we would do if we found ourselves in your position. What advice would you give other women going through a similar situation?
Seek out the best doctors and health care team you can find. Yes, it will likely mean travel. Yes, you will be far from home. Yes, it’s scary, but it is your life. Never settle for anything but the best doctors. Be your own advocate. And ask questions. Mesothelioma, in particular, is not a cancer that can be treated by just any doctor so find the best.
What have you learned about life that my readers might want to know?
My favorite quote is: “Life is a banquet, and most poor suckers are starving to death” Most people are so blinded by fear, they don’t really enjoy all that life is here to give.
What does someone who is living with cancer want most from those around them?
Patience, understanding, the ability to have a bad day. We don’t want advice, we don’t want apologies, we just want to deal with what is on our plate and move forward. And for God’s sake, don’t put me in my grave before I’m ready. A cancer diagnosis does not mean death. I am here…don’t forget.
What do you tell Lily about your illness?
We tell her anything she wants to know. She knows I had cancer, she knows she lived with my parents while I was having surgery, and she knows I have a bad side – the side where my lung came out. She is careful around my left side. She isn’t that curious about it, it just IS. It’s always been a part of her life, so she doesn’t know any different.
You had a terrible start to your life of motherhood, with separations from your baby and recoveries from surgeries, reorganized priorities, what did you do to make up for that lost time?
I don’t work and I spoil her rotten. I spend a lot of time at her school and am very involved with every aspect of her life. But she is a sweet, kind kid. She makes me so proud.
How do you live on a day-day basis with your disease? What does it look like from a practical perspective? What do you keep in mind as you go through your day?
I just try to live my life as normal as possible. People don’t know what I’ve been through unless I tell them – no-one can tell. But my days are pretty much like any other stay-at-home mom. I drop Lily off at school, do stuff around the house, run errands. I have days where I don’t feel so great, so I take it easy, but I mostly am on the go a lot – I rarely sit still. I embrace and enjoy every day. What do I keep in mind through the day? That it is a blessing to be here. Okay, so not EVERY day. Sometimes I forget to be thankful. But then I remember the next day.
Prayer, doing my blog, my pets, my kiddo. All these things help me cope. A sense of humor is huge. The whole Lungleavin Day celebration is one way we cope. We celebrate the day my lung was removed. It is a huge party about conquering your fears and loving life. It is a night many people look forward to and love to celebrate with us.
Did you have any inspiration, a role model, someone to turn to when things got very tough? What kept you going/hopeful?
My mom and dad. They are always there for me. My mom is an amazing woman, and my dad is just so loving. My husband is my rock. He is a clear thinker and kept me grounded when my mind started to go down a scary path. My daughter kept me going. She was, and is, my sunshine. She is everything to me.
What is the best response when someone is diagnosed with cancer?
To just be there, and mean it. Cancer is not contagious. Cancer is also not a death sentence. Offer to cook a meal, clean the house, go to a treatment or just come visit. Don’t forget about us while we are going through this. And PLEASE don’t tell me any stories about so-and-so who had cancer. This is about me. You can say you’re sorry. You can be sad, you can cry, but just let us be the same. Don’t tell us to be strong. Or that prayer will save me. I don’t want advice. I just want things to be as normal as possible.
How did you deal with the range of emotion that must have beseiged you on your diagnosis and on an ongoing basis?
Counseling. I did really good with everything until I was done with treatment, then it was sort of like, um, now what? I had spent a year fighting for my life, treatments were part of my daily life, my job, so to speak. And now…nothing. I had a little Post Traumatic Stress Disorder so I sought out counseling. I had to grieve for all I lost, celebrate all I gained, and adjust to the new normal, knowing THIS was my life. I chose to do something positive and help other people in the same situation. It is the best way to get out of your own head.
Your cancer was contracted through exposure to asbestos, what can you tell us about the health risks pertaining to asbestos?
I would direct you to the Asbestos Disease Awareness Organization, (ADAO) for education. Asbestos has NOT been banned, contrary to popular belief. No amount is safe, and extreme caution should be used if you come in contact with it.
What ongoing treatments, if any, do you undertake?
I no longer am in any sort of treatment, yahoo!!!! But I fly to Boston every 6 months for check-ups, and still am on a few medications, for pain and stomach issues resulting from radiation.
What activities/interests do you have? What do you do with your spare time? Do you still work? What things give you the most amount of pleasure?
I love flowers, flower gardens, so spring and summer keep me busy!! I also volunteer a lot at my daughter’s school, and spend a fair amount of time working on my blog and other outreach. I no longer work. I was a hairdresser but I cannot do hair anymore due to nerve damage in my hand and standing for 12 hours a day behind a chair is just not possible. Spending time with my family and friends is what gives me the most pleasure. And shopping.
Finally, what are you most proud of?
Other than beating mesothelioma despite the odds?? The fact that I have not just sat back and hid. That I am out trying to bring about awareness to this disease through my blog, speaking engagements, interviews, and blogs such as yours that share my story with all those out there. Mesothelioma is more than a commercial on TV. It’s very real, and deadly, and more and more women and men are being diagnosed all the time so helping bring awareness is something I am very proud of.
Read more about Heather’s story and follow her on Twitter to keep up with her news. If you’d like to contact Heather to ask her questions or enable her to spread her story further, you can do so at HeatherVonsj at gmail dot com.
What inspired you most about Heather’s story? What can we learn from her? Let us know in the comments.
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