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I spent the evening making phone calls to family, and friends. My parents live over 600 miles away, and upon hearing the news, made plans to be out here the next day. It’s at least a 10-hour drive, but they needed to be here. I needed them to be here. No matter how old you are, it seems like you always want your mom and dad when you are sick. It was a comfort to know they would be here.
I went to the hospital the next day early in the morning to have a CT assisted needle biopsy done. I once again walked the maze of hallways to the pre-op area. I had no idea what was ahead of me. I was led to a curtained-off bed, given a robe, a gown and some of those grip socks to keep my feet warm. I was informed about the procedure I was about to have, given paper work and post-op directions and waited until it was my turn to be wheeled into the room where the biopsy was to be done. I just remember being very nervous, talking a lot, and mostly thinking how surreal all this was.
A few weeks ago everything seemed fine, and now here I was, in a sterile room, having a needle biopsy done to figure out whether or not I had a tumor. The biopsy was done and I was wheeled back into the room with the sectioned-off beds. I had a short recovery time while I waited for Cameron and Lily to come get me. About an hour later, Cams came in with Lily in her carrier. All of the staff came over and oohed and ahhed over my little girl, but they couldn’t hide the sympathy in their eyes.
"This is not unto death."
When we got home, the wait began. My parents arrived that evening and my mom had told me about a conversation she had with God on the way to Minnesota. My mother is an incredibly spiritual person. She is a great woman of God- a mentor and has always been who I turn to in times of need, times of trial, tribulation and of joy. She has always been a solid spiritual foundation for me, and during times when we are being tested, having someone like her around is a true blessing. During her conversation with God, she heard him say to her “This is not unto death.” I clung to those words like a drowning person does a life raft. Those words were what I kept hearing during the next few months.
My dad was just a reassuring presence to have around. My dad is a great cook and the best way he shows his love is to cook meals, so he cooked up a storm for us. Huge breakfasts and dinners that rivaled our Sunday dinners growing up. So he did what he does best, and that is exactly what was needed.
The doctor called a couple of days later, and told me that he had had the biopsy sent to the Mayo Clinic for another opinion. The pathologists wanted a second opinion. This was either really, really good, or really, really bad. I didn’t know what to think. I asked him again, “Is it a tumor?” He said “yes,” and that he needed to see my husband and I the next Monday in his office. I felt sick to my stomach. I knew it wasn’t good. I hung up the phone and just cried. It was all I could do. I was so scared. I called my sisters-in-law who live near, and my mother-in-law and asked them to come over. I just wanted to be surrounded by people I knew and loved. It gives me strength to be around family. Within the hour, they were all there and I told them I had a tumor and I would find out more on Monday. We all sort of sat around in disbelief. We agreed that no matter what, we would all get through it. I know now that having their support is one of the main reasons we did get through.
Monday November 21st, 2005, just 3 1/2 months after Lily came into our lives, the bomb was dropped.
“You have a tumor.” Said Dr. Flink.
He went on to explain that cancer is named after where it originates, like cancer of the breast is breast cancer, even though it is found in the liver, or lung. So I thought I had breast cancer at first. He said I had a cancer of the lining of my lung, a membrane called the pleura. It was a cancer called mesothelioma. I sat and stared at him in disbelief. What on earth was Meso-what-ioma? I couldn’t pronounce it let alone fathom it. My husband, who was sitting on the other side of the little table in the exam room said, “This is bad. That’s the asbestos cancer.”
Dr. Flink nodded and asked me point blank what it was my dad had done for work? He asked if he had worked in mining, construction, or plumbing. The answer was yes; he had worked construction for years while I was growing up. The Doctor told me I had probably been exposed to asbestos as a kid, and after all these years, developed mesothelioma. This was my first lesson about asbestos. It would be the first of many.
"Get us to Boston."
As I sat in utter shock the doctor gave us some options.. He had personally never treated anyone with mesothelioma, but his colleagues had, and he had asked for their help. The pathologists at Mayo where shocked about what they had found, they had only heard of one other person my age being diagnosed with mesothelioma. So, Dr. Flink did some research for me. He said my greatest chance for survival was to have an aggressive surgery called an extrapleural pneumonectomy. He gave us 3 choices. Good, better, and best. Good was the University of Minnesota Hospital. A very good hospital, but their experience with this surgery was limited. They don’t perform it often and it’s considered highly risky. The better option was the Mayo Clinic, and although arguably one of the best hospitals in the nation, their knowledge about mesothelioma is minimal.
My best option, he said, was to go to Boston, and see Dr. David Sugarbaker, who is the world’s leading specialist in the disease. He pioneered the surgery and is having success with it. And as it seemed, I would be a perfect candidate for it. Without the surgery, and with chemotherapy and radiation alone, my survival would be 5 years at the most. I could forgo treatment, do nothing and live maybe 15 months. But if I went to Boston, and was a candidate for the surgery, my survival could be as much as 10 years; or more. Without missing a beat, my husband said “Get us to Boston.” I just sat there, my mind reeling. I was thinking of my new baby girl and my husband raising her without me, while knowing all along that was not an option. One thing was really eating at me was how on earth we were going to pay for this? I had just come off of maternity leave, our savings had been depleted, my husband’s job was not a great paying job, and I had taken a leave of absence from my job.
Dr. Flink told me not to worry. He would call my insurance company, and have them treat my office and hospital visits in Boston as In-network, since no one here in Minnesota was equipped to treat me. He also told me he would call Dr. Sugarbaker’s office and get me in to see him as soon as possible. The look on is face is one I will never forget. Here is this stoic, serious doctor, who hadn’t shown much emotion during all of our interactions, but as he looked at me, he reached out, took my hands in his, squeezed them and had tears in his eyes. He said again firmly, “I’ll take care of it.”
Twelve days later, we were on a flight to Boston.
Resources for Mesothelioma Patients and their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center