2 0 1 2Jun11

I Have Cancer? Part 8: "Cancer Camp"

Shannon's House
Shannon's House-- or "Cancer Camp".

“Cancer Camp” is what my sister affectionately refers to the days we spent at Shannon’s House that cold February in 2006. We had a room on the first floor toward the back. It was a small room with two mostly comfortable twin beds, a huge closet and a private bathroom. I had packed a fleece blanket that my mom had made for me and brought it with to use in the hospital, and I was so glad to have it with me while I was at the house. It was a little piece of home that I had while healing. She had also made my sister one, and so we both had our blankets from mom with us for “Cancer Camp”

The house was, at most times, occupied by at least 3 other patients and a couple of spouses of people who were in the hospital-- it was quite the collection of people. There was the man from Florida who had a form of Myeloma and was in Boston for a clinical trial. Another man from Pennsylvania who was staying on the 3rd floor was also a mesothelioma patient, going through radiation treatments in Boston. He would just stare at me with disbelief every time he saw me, and would say. “I can’t believe you just had surgery, you look amazing.” We would see him mainly around dinner time, when he would come down to try and eat something. A wonderful addition to the house was a wife of a man who was in the ICU, suffering from the late stages of mesothelioma. Despite his dire diagnosis, he was a fighter. His wife, Lisa, and my sister became fast friends and spent many evenings drinking beers at the dining room table, trying desperately to have some semblance of normality during this strange time.

My sister was an AMAZING caregiver. She was able to anticipate my needs, made sure I was eating and made special trips to Trader Joe’s whenever I even mentioned something might taste good. She made sure I had enough pillows, got all my prescriptions for me from the drug store, bought me some comfy, soft t- shirts to wear around the house and made sure I got up and walked. Most days it was too cold to go far outside, and it was also hard for me to breathe the icy air, she wandered around this big Victorian Mansion with me. Up the flights up stairs, through the halls, down to the basement, 2 or 3 laps around the basement, back up to the main floor-- we knew every nook and cranny of that house.

When I wasn’t walking, or eating, I was sleeping. I slept so much during those first few days out of the hospital. I also had a couple of visitors while I was there. My wonderful friend and lawyer, Jennifer Lucarelli from Early, Lucarelli, Sweeney and Meisenkothen, came to see me and meet my sister while I was there. She was immediately struck by my positive attitude and sense of humor about the whole situation. She said she had never met someone quite like me. It was a relationship that started a few months earlier when I had contacted her law firm in the middle of the night after finding out that I had a cancer caused by asbestos exposure. She called me first thing the next day and we bonded during that long phone call. Finally, after all those months, I was happy to meet her face to face. She didn’t stay long because, even though I felt good, I still tired out quickly after visiting and needed to lie down. A few days later, my husband’s nephew, who was going to school at Cornell University in Ithaca, NY, had come to Boston with friends for the weekend. He came to spend a couple of hours with me. He brought me a big, comfy Cornell University sweatshirt that I got a lot of use out of those next few weeks! Those two visitors broke up the day-to-day tedium.

During those two weeks, I still had medical care. The home health nurses came to the house to check my vitals, and found my heart rate to be extremely high. A quick phone call to Dr. Sugarbaker was made, a prescription phoned into the Walgreens and that little complication was under control. Having the nurses stop by helped put our minds at ease. Things were progressing well. I had my follow up appointment scheduled with Dr. Sugarbaker on the 28th of February. I had been feeling pretty good and was hoping for good news.

Tuesdays at Dr. Sugarbaker’s office are always hectic. Many patients were waiting to be seen that day, most are there for follow up check ups, some are newly diagnosed mesothelioma patients. The waiting room is always full, as are the over flow area in the hallway. It was a reunion day for me. I was able to see both Doug and Sandy that day and check up on each other while we waited to see the doctor. When I was finally called, I was nervous-- what if I wasn’t far enough along to be able to go home? Then what? My sister had already lengthened her stay by a week and couldn’t do much more. I didn’t think I could stay by myself. My fears were unfounded; the good doctor said everything looked and sounded great. I was healing beautifully, my heart sounded normal and, best of all, my scans were clean. I got the go ahead to go home to my family!! My next follow up appointment was made for 6 weeks and the next steps on my journey would begin after that in May. In 6 weeks, I would meet with the oncology team to get the protocol for my chemotherapy and radiation, but in the mean time, I was sent home to heal.

Our flights were scheduled for March 2nd, exactly one month to the day of my surgery. I was finally going to get to see my baby girl! My sister and I flew to Minneapolis together and from there we had to go our separate ways. We hugged at the gate, cried a while and I thanked her over and over again for putting her life on hold for me. She just hugged me and told me she loved me. I had a 5 hour layover while waiting to head to Rapid City, SD where I was meeting up with Cams and our dogs to spend the afternoon with them. After that, I hopped on a plan to head to my parents’ to recover and, finally after being a patient for a month, I was going to be a mom again.

Tags: asbestos exposure, mesothelioma, Shannon's House

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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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