GUEST POST – Parenting With Cancer

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By Heather Von St. James

Once I decided that I wanted to become a mother, I followed all of the “rules” in an effort to prepare for motherhood. I ate healthy, nutritious foods, visited my doctor regularly and read plenty of literature to learn what it would be like once I got pregnant and had a baby. However, none of the preparation I did prepared me for what happened when my daughter Lily was three months old. Three months is hardly enough time to get into the feeling of being a mom.  I had returned to work part time after 4 weeks, then full time at 8. I worked in a salon, and had a large clientele, and the owners suggested that I return to work that fast. I was not keen on the idea, but worked a schedule that allowed me to be home most of the day, and work in the afternoon and evening so she was only in a daycare for a couple of hours a day, otherwise she was home with my husband.

Just as we got into the routine of things though, I started progressively getting sicker and sicker. When she was just 2 months old I did not feel well. I was tired, had a hard time breathing, had a low grade fever every day, and fatigue that can only be described as bone weary. But every day, I had to get up and mother this sweet baby.  I was breastfeeding and pumping at work, but also supplementing with formula. My milk production was not what it should have been, and in hindsight now I know why, though at the time I thought it was because I had to go back to work so fast. I was so tired that we started co sleeping, just so I didn’t have to get up and get out of bed at night and it did make things easier.  Those were the times I cherished the most… those quiet times with her.

Then, when my daughter was three months, my doctor diagnosed me with pleural mesothelioma, which is a cancer caused by asbestos exposure that’s found on the lining of the lung. When we got the diagnosis things at home actually got EASIER.  I quit work to be a stay at home mom as I wanted to spend as much time as possible with Lily because, quite frankly, I did not know what the future would hold. My parents came out (600 mile drive) as soon as we knew I had cancer so they could help out.  Now instead of focusing all my efforts on taking care of my three-month-old baby girl and working, I now had to face a cancer diagnosis, surgery in a city that was 1,200 miles away, chemotherapy and radiation.

We really never had that “honeymoon” baby time – maybe a week or two out of the hospital, but we have been dealing with the illness her whole life, and it overshadowed much.  I would look at her in her sitting and cooing in her infant seat, and just start to cry, ‘Please God, don’t take me away from my baby!”

Since there were no books to purchase that could prepare me for what lay in my future, I only had my gut instinct to follow and so I did what I believed to be best for my child. During my surgery, my daughter stayed with my parents.  I wanted her to have consistency in her young little life and it was something I couldn’t offer her during the early stages of treatment.

After surgery, I returned to my parents’ to rest before undergoing radiation and chemotherapy.  As I recovered from surgery, I surrounded myself with the people who were able to help me with Lily, my daughter, and who could do the things that I was not yet able to do on my own.  When I got home from the hospital, it was all I could do to stay awake for more than 4 hours at a time. I slept a lot.  My body was spending all its energy into healing.  As I got stronger, I was able to do more and more, but for those first few months I needed help in every aspect of parenting.  I couldn’t lift her out of her crib for a month, because of the stitches.  I could hold her, but only while sitting, so we had to have someone else around at all times.  After the first couple of months, I could start to do some things on my own.  I had more energy, felt stronger, I could lift her up, go for short walks, take a more active role.

When we finally got home, I had to have help with everything from laundry to cleaning, and thankfully a small army of people where here to help by cleaning my house, bringing meals… but caring for Lily was my main focus.  People were here to help with her during chemo and radiation, when I was bedridden for days at a time.  Her daddy was amazing taking care of not only her, but me as well – no easy task for a new father – while he worked full time.  His life was ripped apart too, but we have come out the other side stronger.

For Lily’s entire first year of life, her mother was undergoing some sort of cancer treatment. When I felt healthy, I was able to make life as normal as possible for her – we would go on play dates, play in the park, play games in the yard and stroll around the local mall. A lot of time was also spent hanging at home in the living room, just the two of us. I needed Lily to know that, no matter what I was going through, she was still the only thing that mattered to me. She was my main reason to continue living and fighting for my health.

When you’re a mother, you try to do everything you can for the sake of your child. To ensure they thrive, you have to be there for them and care for them, often putting aside thing you would want to do.  But as a cancer patient, you have to come first. You need to take care of yourself above all else, and your own health and well-being becomes first and foremost on your list. It’s necessary to get better, and when you have a baby at home, that’s the primary way you can care for them – by being there. But balancing being a mother and being a cancer patient was far from easy.   For example, when Lily was in her first year she was learning to do all those things babies do.  When she started getting mobile, I didn’t have much energy to chase her around.  We have pocket doors in our living room, so I would close those, put a bunch of toys in the middle of the floor and lay on the couch.  She would bring toys to me and we would play that way. Many days were spent this way, but to her it was just how things were.  I slept when she slept, ate when she ate, and basically we were on the same schedule.  In some ways, it worked great for us.

Luckily, throughout everything, I could count on my amazing husband to fill in the gap that I left when I became sick. My husband was at my side and did everything he possibly could for Lily when I was sick. Luckily, perhaps, for Lily, she didn’t realize anything was different – this life was the norm for her.

Today, six years later, I am cancer-free.  My husband and I still parent much like we did during that first year of Lily’s life, the year I was battling cancer. One of us picks up where the other one leaves off. Now that Lily’s growing up, we’ve been very open with her about my cancer – we haven’t wanted to hide anything from her. My cancer is as much a part of Lily’s history as it is mine and my husband’s. Today, Lily is a bright and happy first grader. I know that the first year of her life – the year I had cancer – helped shape who she is today. If I could go back and change anything that happened after she was born, I’m not sure that I would. Cancer is funny that way. The bad ends up bringing a lot of good into your life and the lives of others. And in our house, the good stuff is what we choose to dwell on.

Heather Von St James is a mesothelioma survivor and a guest blogger for the Mesothelioma Cancer Alliance. Her story is one of hope and inspiration and she hopes to spread her message to anyone who may be going through similar situations to her own.  Check out Heather’s story on the Mesothelioma Cancer Alliance Blog.

 

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