Lung cancer has turned her world ‘upside down,’ but she is fighting back hard and educating others along the way.
Life was great for Janet Thompson in 2010. She was enjoying her new career as a flight attendant for Northwest Airlines (now Delta) and was feeling good about the direction her life was going. “I always wanted to be a flight attendant. We grew up on a farm and my dad always said, ‘we are farm people… we don’t travel.’ I was kind of always the one in the family that wanted to go out and do adventurous things and something different. They didn’t think that was the thing to do.” Thompson grew up near Appleton and Madison, went to college, got married and raised two boys in Glenwood. After she and her husband divorced in July 2010, she moved to the cities and opened a new chapter in her life. She applied at Northwest Airlines in 2008 and got in. “I had been commuting from Glenwood to MSP then to Seattle for a year and three months before my transfer to MSP was approved,” she said. “There were no opening in Minneapolis and Seattle needed more flight attendants, so was relocated to Seattle and was based there for more than a year before returning to the Twin Cities. “I had a cousin in Bellingham who made a car available to me while I was there to be able to get around…it was great to have family in Seattle for the time I was there,” she said. “It was such a great opportunity to see the world, or a good portion of it, and work with some wonderful people,” she said. Janet was back in the Glenwood area visiting friends in 2010 when her life hit a “lump” in the road. “In November 2010, I found a lump in my breast,” she said, “I went to the doctors in Alexandria and went through the whole process. The biopsy came back as breast cancer.” Thompson was nervous about the diagnosis, but not necessarily surprised because her sister had breast cancer eight years prior and she thought maybe she had the same type. “I was sent down to the Twin Cities to the Piper Breast Center, which is a part of Abbott Northwestern Hospital. I had a more extensive biopsy. I mentioned to them doctors that I had three other lumps in my chest and abdomen area. In the initial testing the doctor said, ‘well, sometimes when we get older we get lumpy and bumpy.’ But I don’t come from a lumpy and bumpy family.” The lumps were checked and two hours later a doctor sat down with Janet. “She said, we can’t treat you here at the breast center because you don’t have breast cancer. You have either thyroid or lung cancer,” Janet remembered. She was surprised and confused. The doctor said that whatever was in Janet’s breast had metastasized into other parts of her body. She went across the street to Minnesota Oncology and met with Dr. Joseph Leach. It was Dec. 1, 2010. “My sister, Lori, and I were sitting in the room and Dr. Leach introduced himself and then said, ‘I’m sorry but you have Stage 4 lung cancer. And then he went on to say other things but I didn’t hear him at all. I can remember my sister wailing really loud. I can’t remember doing anything except try to listen to him. I remember hearing the words ‘odds.’” The doctor told Janet that she had a very aggressive cancer and that there was no cure for lung cancer. “He said I had about six months to a year, maybe two years,” said Thompson, wiping a tear from her cheek. “And that is when I lost it. My world was turned completely upside down.” The next day, Janet contacted the airlines and told her she would not be coming in. She was also started to digest what was happening. “I was thinking mostly about my boys,” she said. “And it still is to this day what I think about the most. It is the driving force to beat all of the odds in the books which say I am not supposed to be here very long. This year, I have a two percent chance of living through this calendar year, because this is my second year.” Janet’s goals revolve around her two sons, Matt (26) and Alex (23). “I want to see, I have to see my boys get married and have babies. I want what everybody else has,” said Janet, wiping more tears. Over the next few days, Janet talked with her boys and the rest of her family and friends. “It was so devastating to tell my boys. I had never watched two young men have their world fall apart just like mine was. And we are still working on building that back up, day by day.” Janet said telling her friends about her diagnosis was “very surreal.” “The whole experience for at least the first month was like it was a complete out-of-body experience. It felt like it was happening to someone else.” One reason she felt this way is because she didn’t see herself as a candidate for lung cancer. “It just didn’t fit any of the criteria. The symptoms were persistent cough, spitting up blood, voice change, chest pain, pneumonia, bronchitis… and I didn’t have any of those. I had no symptoms at all.” And she also didn’t fit into the image that most people have for those with lung cancer. While she had smoked in high school, she was far from a smoker. “In my life, I have probably smoked about 200 cigarettes, mostly when I was in high school,” she said. “So no, I wasn’t a smoker.” When the doctor went through the check off list of risk factors, Janet didn’t seem to match up with anything. When he noticed in her file that Janet had lived in Central Minnesota for many years, he asked if she had ever had her house tested for radon. She had not. Testing confirmed that radon was high in her home in Glenwood. And she and her ex-husband and the two boys had lived in that home for 15 years. There is a high likelihood that radon was the primary reason for Janet’s cancer. One important reason why Janet wanted to tell her story to the Senior Perspective is because she felt like she could help others. She believes radon testing is the big first step in protecting yourself and your family against lung cancer. “Minnesota has one of the highest states for radon. In Minnesota, we have a lot of basements and we utilize them. If substandard soil was used as the backfill when the home was built, and then there are any cracks or openings in the foundation over time, the radon gas can come through..” And since radon is odorless and tasteless, there is no way to know if there are high levels in a home without testing it. Radon testing kits sell for $5 or less and can be found at most Public Health offices in the state. “You hang it in your house, mail it off and get back the results in a week,” she said. “I have gotten more OK with sharing my story even though it is is painful to tell the story over and over. Why? Because when I tell people and they tell more people, word gets out so someone gets their house checked. Janet also encourages people to support the American Lung Association. Donations have made a big difference in research and treatment of just about all the different forms of cancer… but fewer dollars have been designated to lung cancer research because of the stigma attached to it. “It is because the perception that people who smoke get lung cancer and if they didn’t want cancer they should have stopped smoking,” said Thompson. “It’s not that simple. And you don’t have to smoke to get lung cancer.” The statistics back up Janet’s point regarding research and trials. According to the American Lung Association, for every person diagnosed with breast cancer, approximately $32,000 has been raised for research. For lung cancer, that amount is just $1,750 per person. She said these figures have a direct connection to cure rate and the number of clinical trials that are funded. Lung cancer takes about 160,000 people per year. In Minnesota, there were 3,340 new cancer cases for lung and bronchus in 2011, which accounted for 14% of cancer diagnoses. The second leading cause of lung cancer is radon. After word spread on Janet’s diagnosis, her old neighbors in Glenwood were worried that the radon could be in their home as well. She said many got their homes tested and none of the homes, to her knowledge, showed high levels of radon. Janet said the next step for protection is on the horizon. “There is a radon mitigation system that disperses the air so the radon levels do not get too high. Thompson said there is a new law going into effect soon that will make this system a requirement in newly built homes. It will be part of code.” After going through the trauma of the diagnosis and talking with her family, friends and doctors, Janet prepared herself for the treatment. From December 2010 to April 2011, Thompson had taken a series of chemotherapy drugs with little progress. During that time, the cancer metastasized to her liver and soft tissue. At this point, they abandoned the chemotherapy treatment and the doctors when out on a limb. She is now on a daily chemotherapy that has been used for pancreatic cancer (not lung cancer). “And I am the first one who responded to it,” she said. “I have taken that since last May. The drawback to that is when you are on traditional chemo you feel like crap for about week and then you try to come back out of it. Because this is a daily treatment you feel like taking a nap every day.” Emotionally, Janet admits she has had some tough days. But she tries to maintain an optimistic attitude even through the darkest days. “I’m thankful every morning I wake up. I don’t look at life the same. I don’t experience life the same,” she said. “I have a wonderful support system, my sister, wonderful friends, that have stayed with me. They were my babysitters during chemo. They were instrumental in me making it the first six months when it was the worst of the worst.” And the worst of the worst can be extremely painful. “You live from one scan to the next scan to the next scan to the next scan. And you are always wondering, is this the month, is this the month? It is a horrible way to live. You lose your whole sense of identity when you don’t have a job. Your friends you used to fly with, are all flying and when they are home, they want to spend time with their families. Cancer is a club of its own and it not one you ever want a membership in.” She also been adjusting to changes in relationships. “Some people are going to step up to the plate and some are going to step way back because they don’t know what in the world to do. It is not that you lose friends over it but friendships change. You can’t fault people for not knowing how to handle it. Heck, I don’t know how to handle it.” Janet’s cancer is aggressive, but Janet has been equally aggressive in her battle against cancer. “I have seen counselors, Chinese faith healers, Christian healers, nothing is out of the realm of me looking in… because it changes your entire outlook on things,” she said. And while the cancer has not changed for the worse in the last 18 months, it has also not changed for the better. That has frustrated Thompson. “I’m kind of a goal oriented person, so I can’t imagine why I can’t get ahead of the game and get this to go away,” she said. Besides her own boys, there were other young men who served as inspiration during her treatments. “When I did work for the airlines, I got picked to fly with the St. Louis Rams football team. You had to apply and I decided to go in and just try it. I didn’t think that was going to be picked by any teams, but I was picked by the Rams. There were seven flight attendants and we would fly from Minneapolis to St. Louis. We would get the 757 ready and then pick up the team, the coaches, the media and other staff. We would fly wherever we would go for away games. She would get to know these young men, who could be my sons… only a lot bigger. I was nicknamed, ‘Minnesota.’ They would say, ‘Hey, Minnesota, could you get me a Coke?’ They said I had an accent.” They traveled with a pastor and priest and were very much into the organization Fellowship of Christian Athletes, she said. “I was fortunate that I was flying with the Rams. When I was diagnosed on Dec. 1, we had a trip on Dec. 4 and 5, and then I had my first chemo on 6th. I basically had to say goodbye to everyone on that trip. One of them asked me if they could pray for me. I thought they meant as a team when they got back to St. Louis and their facility. After saying goodbye to them I went to the back and was eating a meal and all of a sudden I looked up and the whole back galley is full of large football players. They all put their hands on me and they all prayed for me.” After that flight, the love from St. Louis did not stop. She received notes, game balls, a even team jersey with “Thompson” on the back at number one on the front. “In life you never know why you’re chosen, when you’re chosen and for what you’re chosen and the time you’re chosen. That organization has been instrumental in keeping the mental aspect of this going. It is great group of nice young men and their coaches are great.” Janet continues to explore all her options and search for answers in her quest to beat her cancer. “In February, I was evaluated at the National Institute of Health in Bethesda, Maryland for a clinical trial. I was tested and not accepted for any of their trials. I did learn about lung cancer genes and the ones that I don’t have. After that visit I was really disappointed and downhearted,” she said. “I didn’t know where to turn. I knew I wanted to keep looking for medical options but didn’t know where to go. So that’s when I wrote a letter with all my previous chemo drugs and test results and hit the internet.” Janet sent her medical info to everyone in her address book and then went to the social networking website, Facebook. “I had a lot of people get back to me with studies to read and doctors around the country to visit with. What came out of the email blast was a lead in Nashville, Tenn. at the Vanderbilt University. I met with an oncologist and he suggested a type of scan that would identify a specific protein and if I had it there was a monthly treatment option similar to the previous oral chemo I was on . . . this would hopefully stop the cancer from growing. “I would not be a cure but anything is worth a try at this point. His clinical trials would require weekly labs in Nashville and that wasn’t realistic so he asked if I had checked at Mayo yet,” she said. Four days later, Janet had an appointment in Rochester. “On May 3, I went to see Dr. Marks at Mayo. He suggested the same type of scan and shot if I reacted to the test. So I felt good I was heading in the right direction,” said. “I had my first shot and I felt pretty punk for about five days but it’s starting to turn around. I am now on a waiting list for a clinical trial at Mayo.” A copy of the letter she posted on Facebook is included at the end of this of this story. If you might have advice or can help, she urges you to read this. “My faith is the only reason why I’m still here,” said Thompson. “God has plans for me. I don’t know what they are yet but I’m open to whatever comes my way. I have a terrific family and great friends who have made the “ride with cancer” more livable. I can’t tell you the large amount of people I meet that give me courage to go on. . . it comes from so many places. I am truly blessed to be this far in my journey. Since Dec. 1, 2010, life has never been the same but that’s a good thing. I never look at life the same…never take one thing for granted and always live in the moment. I am well enough to volunteer at church, see friends, enjoy the outdoors and just plain live.” Janet believes every person’s “cancer ride” is different. She hopes her ride will be one that can help save someone else from going through what she and her friends and family have been through. “I want to beat the odds and live longer than the stats . . . and most days that’s extremely challenging but it’s my ride and that’s the way I want to live…hoping and praying for more time,” she said. Recently, Janet decided she was ready to go back to work for Delta Airlines. She has a training in Salt Lake City soon and then hopes to fly a part time schedule after that. She also hopes to rejoin the St. Louis Rams flight team this fall. “Delta and The Rams have done so much for me while I’ve been on leave,” she said. “They have kept in contact with me and still made me feel like I’m part of their team! When you have cancer and your whole world turns upside down in an instant you tend to look around for the old normal and what you can count on and I’m very happy to have had both of these companies in my corner!” Thompson, who now lives in Eagan, also wants to take her boys on a trip to Hawaii this year and show them some things to do there. “I want to show my family and friends that cancer really does stink but it doesn’t define who I am as a person,” she said. “My Grandma Keilen from Montevideo used to say…when you get bad news you can have a pity party but after that…put on your big girl boots and keep on going! I have my boots on and I continue to live because that’s what I want to do.” If you would like to follow Janet’s cancer ride in her big girl boots, visit the web site www.caringbridge.org/janetthompson1962. Janet’s Thompson’s letter: My name is Janet Thompson, 49 and I live in Minnesota. I am in search of an evaluation of my medical condition. I have Neuroendocrine Carcinoma of the Lung…with metastatic to the liver and soft tissue…which was linked back to my home that had high Radon levels. I was just at NIH in Bethesda to see if I could qualify for the molecular profiling and targeted therapy for advanced cancer but I did not have one of the 12 known mutations in my gene that would qualify me for that study. These are the mutations I do not have…EGFR, KRAS, BRAF, HRAS, NRAF, PIK3CA, AKT, PTEN, KIT, PDGFRA, ERBB2, ALK AND CD-30. I am still wanting medical opinions to investigate my rare form of cancer. The soft tissue is secondary cancer as is my liver but I have had several growths on my skin surgically removed (once removed they don’t come back) but they once were primarily on my chest and now they keep growing all over my body. Each month the lumps bruise up like a bruise and it looks like they are going away(like a bruise) and then they stay and in another month go through the bruising process all over again. My lung cancer is not progressing much at all and the liver is stable but the soft tissue is invading my entire body. No doctor has seen this before and I’m hoping to find one doctor that has. I am currently on Afinitor 10 mg daily and have been since last May 2011. I have all records and cds of scans to send. Could you please look at my treatments that I have been through below and let me know if you know any information about this cancer. Thank you so much. My life depends on this. 12/6 chemo – carboplatin and etoposide – mostly fatigue but felt pretty good after chemo, sour stomach, indigestion, day 5 huge appetite from steroids 12/27 canceled chemo as blood counts too low – more spots on skin have appeared so switching chemo to gemzar and taxotere 1/3/11 chemo given – gemzar and taxotere 1/6 CT scan, no further growth from initial treatment, with 2nd chemo of gemzar and taxotere felt fatigue, body aches, shooting pains in joints which lasted 7 days, very painful, took antiobiotic for infected hair follicles 1/9 moved into apt, emergency room for joint pain, severe itching of scalp 1/10 couldn’t start chemo but started on 1/13 gemzar and taxotere again 1/24 counts great so round 3 of gemzar and taxotere, had reaction to taxtore during treatment and had to give more Benadryl in IV and gave treatment very slow 1/26 only up 2 hours at a time, joint pain started and lasted almost 10 days – took neproxin around clock for joint pain, 3/7 scan, lung tumor same , couple new spots on skin, need to try new chemo, first need injection of B12 and start chemo in week 3/17 chemo alimta – pemetrexed 4/7 appt dr leach, continue with this chemo, spots are stable have scan on 4/26 and then chemo 4/26 CT Scan 4/28 spread to liver, try to get in to clinical trial or take everolimus, affinitor, mTor inhibitior that stops cancer cells from reproducing, decreases blood supply 5/3 started affinitor To date I have an ECOG performance status of 1. I work out and no one can believe I have cancer. Please help me!