Interview with Cancer Survivor and Awesome Mama Heather Von St. James

Friends, I am so excited to share with you this amazing mama’s story. May is National Cancer Research Month, and I hope that you take a special moment this month to send a kind thought or prayer for our brothers and sisters whose lives are changed by cancer. I am so grateful to be able to share with you this interview with cancer fighter, survivor, and excellent mother Heather Von St. James. This is her story:

Heather Von St. James

First of all, I would like to share how grateful I am to be doing this interview with you! Your story is truly amazing and inspirational. Would you give us a little background information on your life and why you chose to dedicate your time to spreading awareness about cancer, particularly mesothelioma? 

Thank you so much for your willingness to help me spread the word. This is how a movement starts, one voice at a time. 🙂

I was a business owner and stylist in a busy salon for 14 years up until my diagnosis in 2005. I was diagnosed with malignant pleural mesothelioma on November 21st, 2005, just 3 1/2 months after the birth of my only child. After I made it through surgery, chemo and radiation, I left my last radiation appt with a vast feeling of abandonment. I had spent the last year fighting for my life every day. I had medical appointments weekly, if not daily. It consumed my life. You would think I would be happy to be done. On one hand I was, but on the other, I felt lost, I had sold my business, and knew going back to work in the salon was not a possibility, not with one lung and all I had been through. I felt very alone, and decided that I needed to help other people. I started by talking with patients while I was at my appointments in Boston, then got involved with a couple of non profits dedicated to mesothelioma and asbestos awareness. It was through these that I met other meso patients and was able to help others with the same diagnosis as mine. Helping others gets me out of my head. And helping people navigate those first few scary months helps them with their battle. I was surprised at the number of people who had never heard of this disease until it struck them. I decided awareness is where it all starts. Just think, 15 years ago, pink was just color little girls wore, now Pink is synonymous with breast cancer awareness. You can’t see pink without thinking about it. I want people to be that aware of mesothelioma.

You discovered that you had cancer when your daughter was just 3 ½ months old, how did you balance caring for your health and caring for a newborn?

I had a ton of help.  You know the saying, “it takes a village”.  Well, I had a village surround me and help me take care of my daughter. Friends, family, neighbors, so many people willing to help.  At one point, I was not physically able to care for her. It was right after my surgery. We lived with my parents at that time, and they basically raised Lily while I recovered from surgery. When I was going through treatment, I had a couple of nannies that would help out. I slept when Lily slept, and took advantage of every offer of help that came along. I could not have managed without that incredible support system.

What advice would you give to new mothers, or mothers of any age battling cancer?

You can’t do it all. You can’t be super mom, super wife, work, and battle cancer. Something has to give, and it is okay to let others in to help. When you feel good, make that quality time with your kids. The cleaning can wait, or hire it done. Ask someone to help with laundry. People WANT to help and this is the time to let them. Get rid of the pride, and let them in. When you start feeling better, then tackle all that stuff and figure out what is the most important and go from there.

What screening tools are available that every mother should be aware of?

Sadly, there is no screening for mesothelioma. If you think you have been exposed to asbestos make sure to tell your doctor so it’s in his notes. If some symptoms start happening, then a ct scan would be in order to check. It is something that is in the process of researching right now. More early detection tests but nothing is available right this moment. 

Heather Von St. James' Family

How can we, on an individual basis, work to bring awareness to victims and fight to put an end to cancer?

I think supporting cancer research is key. Find a charity or non profit that specifically funds research, or a University with a good program in the type of cancer you want to support. Cancer is not just one disease. It is a very complex series of maladies that affect every part of the body and each responds differently to different treatment. Call your government officials and urge them to support cancer research with their allocations. The National Institute of Health is vital in the war against cancer, and without government funding, it cannot continue to function. 

Many people wonder what to say or do to help a friend suffering from cancer. Do you have any advice on what to say, or what NOT to say? How can friends and family, or even acquaintances be the best support team they can be?

Don’t say. “It’s all part of God’s Plan” Or “At least it’s the Good type of cancer” or “Well, You LOOK good” (I personally hated that one. What was I supposed to look like?)  There are so many things NOT to say. Just be kind, courteous and attentive. Don’t desert your friend in their time of need. Cancer isn’t contagious. You can’t get it from them.  Ask if you can help them make a list of ways people can help them. Offer to make a meal, do laundry, clean the house, or the bathroom at least. Bring us a gift basket of comforting things such as fuzzy socks, a stuffed animal, a book of funny things. Pray with us, pray for us. But most of all, just check on us. I had people who I thought would be there for me disappear and have not heard from them since. That hurt so bad. But others who I never dreamed of, showed up and were such a huge help to me. Those people are still in my life to this day. It’s a balancing act. But just be real, it’s okay to be scared for us. Tell us that so we can get rid of the elephant in the room and talk about more important things…like who will win The Voice. 🙂 

Thank you again for your willingness to help!! It is so touching to know there is such great support.

Readers, two places you may be interested in starting if you are interested in supporting research are the Cancer Research Institute or the Mesothelioma Cancer Alliance, where Heather is a regular blog contributor.  You can read more about her and her amazing survival story here.


Putting in roots

For the past oh, maybe five years, I’ve moved from apartment to apartment, town to town, in four different states, and let me just say that all that moving is NOT conducive to gardening whatsoever.

I haven’t been on the run or anything, just transferred colleges, then went out to beautiful Los Angeles to live with Bodie, then we came back east before Miriam was born and now, God willing, we may stick around long enough to put roots in.

tomatoes, bell peppers, and sweet peas

I started small, since we don’t have a lot of space, and did (not-so-eco-friendly) disposable cups since I happened to have them around and I am hoping to give away some of these seedlings once they get a little bigger.

I put scrunched up paper towels in the bottom to help keep the soil moist but not soaked, and just over a week later I have several little baby plants! Once the babies get bigger and the chance of frost is gone, I’ll transfer them to containers and put them out on the balcony and let them do their thing.

This is just one little small step, but it feels good to know that at least some of our vegetables this year will come from our own hands and not off a grocery store shelf. Sure we love to support local farms and outdoor markets, but there really is nothing like doing the work yourself. I think it’s in our blood, or at least in mine.

new life

Our #sliceofperfect in a #messyreality

Here is a #sliceofperfect (project by Jill Krause over at Baby Rabies)

That face. I can't stand it! Behind that adorable tongue is a fevery virus waiting to be spread around.

That face. I can’t stand it! Behind the sweet baby kisses is a fevery virus waiting to be spread around.

Can you tell this kid has a fever? Probably not, but a couple hours before this was taken she was vomiting her breakfast.

So here’s the bad: she is sick. She’s had a fever between 101 and 102 since yesterday. Before I realized she was sick, we ran around all day and probably infected lots of people including a group of other mommies and babies that we met up with in the morning. We were up late, her diaper leaked at 1 am, and she woke up earlier than usual. I’m running out of ideas of how to entertain a sick 10 month old.

However, we got to see my mom yesterday, and her cardiologist friend said Miriam’s heart sounded healthy. Bodie and I acted as a team and traded off caring for Miriam without arguing with each other. Tylenol helped. Miri did sleep for 6 straight hours last night and has been napping like a champ today. She has been nursing tons and even got down a few bites of dinner last night and breakfast today. I got the taxes done, the health insurance paperwork, the bills paid, and have fed us all healthy meals.

She’ll feel better soon, but in the meantime we’ll take all the prayers and kind thoughts we can get. Here is our #messyreality



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I Am Strong

Some of you may know about the Birth Without Fear “I Am Strong” project. Here is my entry:

I am strong because I became pregnant even though I have polycystic ovarian syndrome

I am strong because I had an unplanned pregnancy

I am strong because I explained to my family why I was pro-life

I am strong because I left college to be a mother

I am strong because I moved across the country at 34 weeks pregnant

I am strong because though we are not married, we worked to be a family

I am strong because I tried hard for a natural childbirth

I am strong because I knew when I needed help and let go of my birth plan

I am strong because I endured two epidurals, antibiotics, and pitocin.

I am strong because I still delivered vaginally

I am strong because we moved 3 times in 6 months

I am strong because we chose to live near my family, and I have a beautiful, healthy, strong baby girl.

Most of all, I am strong because of God, and the amazing blessings he has bestowed on us.

Vocational discernment, in baby steps

Recently I had 6-7 inches of my hair cut off. Woohoo! Freedom! No more miserable blocks of time spent brushing out tangles, no more scraggly Michelle, no more worrying that somehow my hair will get wrapped around my baby’s neck while we sleep next to each other. Also, no more wondering whether I want to be a nun. Weird right, from a haircut? But seriously. Vocation affirmed.

In the Catholic faith we talk a lot about ones “vocation”, which is a word that means one’s “calling” in life. When I think of vocation I think of two aspects; one’s career, and whether one has chosen to pursue the life of a layperson or the life of a priest/nun/monk.

Until today, I’m not even really sure that I was aware that I had chosen not to pursue religious life. When I was pregnant with Miriam, I remember thinking, “I guess I won’t ever be a nun… nuns don’t have children.” I kept thinking of St. Rita, who did have a husband and children, and THEN became a nun afterwards. It was never really something that I seriously considered or explored as a possibility, but it was always in the back of my mind.

Letting go of the thought of being a nun means another step in embracing my life as a partner and a mother. I don’t see it as something to be regretful about, but as me stepping in a direction more in line with God’s path for me. For every weak branch that we trim, our trunk, our true calling, is affirmed and strengthened. I’m happy with this decision, and am happy to have discerned another aspect of my vocation!

Vaccines again? Here’s my take on it…

I wanted to weigh in on the vaccine issue, which I know is a controversial one that has been gaining attention lately because yet another celebrity has come out as anti-vax, and because measles (which many babies are vaccinated for) is on the rise in NYC and some blame anti-vaxers.

First of all, let me just say that making the decision whether or not to vaccinate your baby can be a highly emotional one, and there is plenty of fear mongering literature on either side of this issue to scare new mommies silly. I won’t use this post to try to sway you one way or the other, but I will share my experience.

When I was pregnant with Miriam I left the vaccine decision-making to the end. I figured I would research each one as it came up. I got the flu shot while I was pregnant, because it seemed to me more likely for my baby to suffer complications from me catching the flu than from any potential vaccine reaction. That was easy because it was a game of statistics. Which is more likely to happen, flu or vaccine complication? Which is more likely to have a serious outcome? I got the shot, and was glad that I did.

When Miriam was born, we had to decide about her in-hospital vaccinations. For some reasons that I’m still not sure of, they did glucose tests repeatedly on her little heels which was excruciating for us watch.  Miriam kept almost meeting the criteria to stop receiving the tests, but falling a point or two behind the blood sugar level she needed to pass. They had recently changed the standards too, making the requirement higher and even the nurses were unsure that she should continue to receive the foot-pricks.

I did not let them take her to the nursery except to test her hearing and to do one foot prick. The nurse told me that we were not allowed to do it outside of the nursery, and that I had no choice. I asked Bodie and both the Grandpas to follow them and watch to make sure Miriam was okay. Bodie came back seething, the nurse had treated her very roughly, “juicing” her foot to get enough blood out. “They didn’t even treat her like a person” he said to me. “I wanted to punch them”.

I was very wary of the glucose tests after that point, especially since she had almost met the criteria to “pass” the test so many times. I told the nurse (another nurse, that other one thankfully switched shifts or left) about my feelings and asked her to check with the pediatrician to see if they were truly necessary. He had us do one last test, because it was required by the state for genetic testing, and fortunately Miriam passed this time.

If she hadn’t passed, I don’t think I would have let them test her again. I have discussed it with her pediatrician numerous times and I am unconvinced that it was necessary. I hear that it is necessary for macrosomic babies (which she was not) for mothers with gestational diabetes (which I did not have), and so I remain unsure that there was actually a risk of her blood sugar dropping to dangerously low levels, as the lowest it dropped was within the previous range of normal.

Her tiny little feet, care of Bellababy Photography

After this experience I was less trusting, and unsure about the hepatitis shot that they give babies in the hospital. It was the day of our discharge, and I remember my mother in law encouraging me to not get it, Bodie saying she could wait, and me sitting in the hospital bed terrified of her somehow contracting this horrible disease because I did not get her vaccinated. I narrowed it down to two options: get it in the hospital, or get it at our first doctor’s visit in a day or two.

I called my Mom (who is a doctor) crying, to ask if she thought it would be very risky for me to wait. She reassured me that it wouldn’t be that big of a deal, and Miriam would have a couple days to grow bigger and stronger (and recover from all the foot pricks).

After that one delayed vaccine, I chose to get the rest on the normal vaccine schedule. To me, the pros outweighed the cons, and the risk of getting the disease seemed to me to be much higher than the benefits. I did not find any sound medical research that vaccines cause autism, or any other terrible problems. I did see that measles, mumps, rubella, flu, all had high risks of death in infants. I saw that vaccines had a very low risk of complications, and that the amount of “bad” ingredients was so tiny, it was probably akin to eating a fast food burger. Not so great for ya, but probably not going to kill you if you do it once every few months.

So that was my decision, and every once in awhile Miri will get a fever with her vaccine, and I’ll spend an hour worrying that I made the wrong call. In the end though, I feel that it was worth it, that we did the right thing, and that we didn’t let the research work us up into a panic.

Here’s to you, God!

Today we all grew up a little… Miriam spent her first evening with Grandma, and Bodie and I had our first dinner out, to celebrate his new job. I was getting myself some crackers and cheese, and a glass of wine before I sat down to write this post and I thought, wow, self, I am proud of you. Today you put on make-up, had a date, and are now about to eat wine and cheese like a grown up.

This week was crazy. It started off so rocky. Bodie didn’t have a job, and I started to look for work. I started a job as a waitress at an Italian restaurant, and two days later Bodie was hired by a company he loves, doing the work that he has been doing in his spare time for fun. He couldn’t be happier, and neither could I. My two day stint as a working mom gave me that extra nudge of confidence to be able to leave Miriam with my mom tonight and go on our celebratory date.

It seems to me, and I realized this as it was happening, that this was God’s plan being enacted, and I had to let him lead me. He steered me towards my job and gave me the strength to handle it, taught me how to leave my baby for the first time. He knew I was ready, and that I wasn’t going to make that step on my own and needed the extra little nudge. He also led Bodie to his job, not a corporate job with no purpose in sight, but a job where Bodie could work on free, open-source software using exciting new technology for developers like him.

So here’s to you, God, and thank you for these great gifts. Thank you for taking care of us and putting us exactly where we need to be, exactly when we need to be there.