2 0 1 1Dec02

I Have Cancer? Part 5: A Bittersweet Christmas

heather lily christmas

Our baby's first Christmas, 2005- It was supposed to be memorable, and it was, but for all the wrong reasons. We did everything we usually do; Christmas Eve with my husbands family, but despite the festive air of the season, no one could ignore the dark cloud hanging over us. To this day, when I decorate my Christmas tree and I put the "Baby's First Christmas" ornament on the tree, I do so with a bittersweet feeling.

Who Would Care for My Baby Girl?

We had just a month to prepare for the upcoming surgery, and iron out details... just a few small ones, like where were we going to stay in Boston while all this was going on? And who would take care of Lily? I was to be in Boston for at least a month, and bringing her with us was not an option. We could not care for both her and me at the same time. My husband's family offered to watch her and take turns, but that didn't set well with me.

My mom and dad were more than happy to take her, but that had its own complexities. My parents live 600 miles away and we would essentially be moving Lily in with my parents for however long I was away. In the end, that was the best option. Flights were booked, my husband and I were off to Boston, and Lily and my mom to South Dakota. After my surgery and recovery in Boston, we made plans for me to recover, as well, at my parents home, so I could help with Lily.

I knew I would be in no shape to take care of her myself, and Cams had to keep working. Just because a person gets sick, doesn't mean the bills stop. They keep coming in and getting bigger. As far as housing in Boston, a hotel room was cost prohibitive, at a minimum of $200 a night, and being there for at least a month? It was just not an option. We found out about a place called Shannon's House through the International Mesothelioma Program . It was a large home, with 8 bedrooms, some with a shared bath, some with a private bath, but the price was right. $400 for the entire month was something we could afford. It was also a real home, where other families and patients lived, so there were other people around, which was important for both of us.

Conquering Fears, Making Peace With Punxsutawney Phil

The month of January flew by. We tried to keep things as normal as we could; I had quit work so I could be with Lily as much as possible. We spent most evenings playing with Lily, discussing the upcoming surgery, and making plans for the future. One night, my husband and I decided to make peace with the tumor growing in my chest, and give it a name. Since my surgery was scheduled for February 2nd, we now affectionately referred to it as Punxsutawney Phil, or just Phil for short. Humor was our defense against the fear. My sister and my husband were making plans for the Boston stay, as she was to come out to stay with me the 2nd half of the month, when Cams had to come home to work. They started joking about Groundhog's day, and my surgery being on that day, and she officially changed the name to "Lungleavin Day." They made up a whole tradition for Lungleavin Day. First off, a bonfire (a HUGE bonfire) in our back yard was the center of the event.

The best part of the tradition has its roots in fire walking, which my sister has done. In fire walking, you take a piece of wood, and write your fears, or negative influences on it, and throw it into the fire, then you walk over it, therefore conquering your fears. Since we weren't really into fire walking, they decided that we should take a plate, write our fears on the plate in sharpie marker, and smash the plate into the fire. It was something fun to think of and look forward to the next year.

The month of January seemed all at once to fly by, and to crawl at a snail's pace. I turned 37 on the 5th of January, and had to renew my driver's license. I remembered thinking that I was going to make sure I was around 4 years later to renew that sucker again. It was just another thing people take for granted, renewing a driver's license, but now all of the sudden for me it became a goal.

heather lily

The Flight of My Life

Before we knew it, the time had come to pack our bags and head our respective ways. My mom arrived a few days early, mainly to reacquaint herself with Lily. She didn't have to worry, Lily seemed to remember her and loved being with her. That made my leaving a little easier. Those next few days were spent visiting friends and family, getting my 2 dogs settled in with my mother-in-law, my cat with my sister-in-law, and the key to the neighbors so they could keep an eye on the house and get the mail while we were gone.

On January 30th we all got in the car and my sister in-law drove us to the airport. Mom and Lily's flight was scheduled to leave an hour after ours, so they came and waited at our gate. Cameron and I took turns holding Lily, loving on her and telling her over and over how much we loved her and we would see her soon. That was probably the most painful part of the whole thing, knowing I would miss my baby girl's whole 6th month of life. Cams would miss much more than that.  As our plane was boarding, we hugged one another again, walked to the door and blew my mom and Lily a kiss, each of us trying not to cry. We weren't succeeding, but we knew this is what had to be done. 3 hours later, as we were touching down in Boston, my mom and dad were settling into life as parents to Lily and I was in for the fight of my life.

Tags: brigham and women's hospital, international mesothelioma program, lungleavin day, mesothelioma

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About Heather

  • Wife of Cameron Von St. James and mother to Lily Rose
  • Pleural mesothelioma survivor
  • Treated by Dr. David Sugarbaker at Brigham and Women’s Hospital in Boston
  • Self proclaimed “Poster child for hope after mesothelioma” for those suffering from asbestos disease
  • Continues to live with strong faith, abundant gratitude and an unbeatable will to live each day

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