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It’s what we do next that matters / by G. Alan Rader


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It’s what we do next that matters

January 3rd, 2013 - by G. Alan Rader

http://blog.lungevity.org/2013/01/03/it ... t-matters/

My name is Alan Rader. I live in the country about 15 miles northwest of Harrisburg, Pennsylvania. I was diagnosed with stage 3 lung cancer at the age of 59. Like many survivors I’ve come to know, I was misdiagnosed for a few months before the pieces were put together. The results of a CT scan showed a mass at the peak of my right lung. The primary care dr. set up an appointment for me to see a surgeon who could see me in a month. I have to say that I wasn’t surprised about possibly having lung cancer. I was emotionally numb about it. I went to work the next day, I had to finish a job I was doing. All I knew about lung cancer was that it would kill me. I lost an aunt to lung cancer and it happened fast. I lost my father in law to lung cancer and happened slowly and painfully.

We weren’t about to wait a month to see a surgeon and lose even more time. My wife Susan spent part of that day researching what we could do now. She found Cancer Treatment Centers of Americas’ website during her search and called the 800 number. She talked to a guy who said they could see us on Monday. They recognized our sense of urgency. That got our attention and we went to Philadelphia to see what they could do. It turned out to be a great decision.

My cancer was inoperable; it had worked its way into my spine and a rib. They called it stage 4 because it invaded a vertebral body. Others called it stage 3 because it was one tumor. I went through 30 radiation treatments and 20 chemotherapy sessions. A month after the treatments were complete they did another PET/CT to see where we were. Surgery was still out of the question, the proximity to the spinal cord made it too dangerous. I probably would be paralyzed. Cyberknife and 6 more chemo sessions finished it off. January 2010 it was NED and has been to this day.

During treatment I really had no significant painful side effects. I had no nausea. I did get fatigued and I did get dehydrated and I lost all my hair, the usual things I was told to expect. The doctors and nurses all did a great job, they seemed to have all the bases covered and made me extremely confident about the care I was getting. They did offer physical therapy and I strongly recommend doing that during treatment. It kept me in good shape; I learned breathing techniques and the importance of maintaining strength. They also offered acupuncture which they did often and sometimes during my chemo sessions. The only real challenge I have since is dealing with a severely damaged ulnar nerve. I am right handed so I’ve had to learn to live with that small inconvenience. The cancer had eaten almost 43% of the T1 vertibra. I learned so much about lung cancer through all of this, things I never would have known.

I was a smoker but I had quit almost 5 years prior to my diagnosis. The industry I was part of also wasn’t conducive to great health either. I saw many of the guys I worked with pass on not long after their retirement from one lung disease or another. That’s why my diagnosis wasn’t a shock to me. What got me through the initial part of it was remembering that it’s what I do next that matters. The other stuff is history. During Lawrence Taylors’ acceptance speech at the pro football hall of fame, he said that a champion is determined by not how many times he’s knocked down, but how many times he gets back up. I heard that many years before I got cancer, but I drew inspiration from it. I also was inspired by Jimmy Valvano’s speech at the ESPY awards long before I was diagnosed. It is available on YouTube or Google it, it’s a must-see speech.

People I meet sometimes start out with the smoking question. I’m not disturbed by it at all. I understand the stigma associated with lung cancer and its connection to tobacco use. I use it as an opportunity to educate that person about the fact that almost 60% of new cases are nonsmokers and people who quit many years ago. Sometimes they are interested and sometimes I feel like I’m talking to the wall. Like I said before, it’s what we do next that matters. I do wish that everyone understood how many people are lost to lung cancer and how underfunded the research is. Perhaps it takes a loved one being diagnosed to raise awareness. The fact is that 1 in 14 people will be diagnosed with lung cancer. That is one reason I work to inform people about this disease, to increase funding for research and treatment.

Cancer Treatment Center of America has kept me involved in survivorship programs. I sometimes meet with new patients at the Philadelphia hospital. I’ve been part of their Patient Advisory Council. We are a group of survivors from their different hospitals. We meet in those cities, tour the hospital, talk to patients there and find ways to make the patient experience as good as it can be. We have made a difference and examples can be found all over the place. It is a hard job as everything is covered very well already. Our group has visited 3 of the hospitals with 2 to go. This torch will be handed over to a new group and the task will continue.

They asked me to be in one of their commercials which I did gladly. It is airing all over the country and has achieved results. I have met people in Philadelphia who told me they saw it and made the call. That’s what we did and I’m a survivor. They do really great things there and I’m proud to be a part of their efforts in the fight against cancer. I also take part in a program called the Patient to Patient Network. A new patient is offered an opportunity to speak with a survivor who has “been there, done that”. It’s very rewarding when I find out that someone I spoke with, sometimes for hours, made a decision to come to CTCA and is doing well. I’ve talked with well over a hundred cancer patients and look forward to seeing them in Philadelphia when our paths cross. These things keep me focused; I want all cancer patients to have good results. They do try to forward lung cancer patients to lung cancer survivors but we do speak with patients with other types from time to time. We aren’t giving medical advice or solutions, we’re trying to help them understand the treatment model and how their initial visit will happen. It helps ease their anxiety about traveling and those things. It has been very rewarding.

I read a full page ad about LUNGevity in the spring issue of Cancer Fighters Thrive magazine one day in the spring of 2011. I checked out the website and joined immediately. The support group has been wonderful there. I posted my news now and then and I’m sure I ruffled a few feathers from time to time. I did get responses from survivors who had the same type of tumor that I did. Donna from the Minneapolis area was the first to answer and Kasey from very near my home came along too. Donna was a 14 year survivor and Kasey, 7 years. They both gave me so much hope and inspiration. I found out that the type of cancer we share is less than 3% of all lung cancer types. I’ve never met in person another case like ours. I have talked to some newly diagnosed people with it and I always tell them about these 2 ladies. (No, I don’t use your names).

Last May, I had a chance to attend the Hope Summit in Washington D.C. There were almost 50 lung cancer survivors in one room. It was a very powerful thing. We were from every corner of the country and I don’t think any 2 of us were treated at the same place. There is great care all over this country and this was one happy group. We listened to speakers, shared stories, meals, laughter and even some tears. “That’s a full day.” We have lost a few of these wonderful people since then and we all know that this is the nature of the beast. I know these souls are still with us and the legacy they left will live forever in the hearts of those touched by them.

Sometimes I think getting cancer was the best thing that ever happened to me. The people I’ve met have inspired me beyond imagination. I’ve met runners, cyclists, swimmers, “gymmers”, hikers, writers, workers, and we’re all husbands, wives, fathers, mothers, sisters, brothers, advocates and many more all with this commonality. I’ve learned what things in life are important and the things that don’t matter at all. I wonder if these thoughts would be at the front of my brain if I didn’t get cancer. I know I’d still be working, I loved my little business. I wasn’t through, I had projects unfinished and more to do. It was as if the rug got pulled out from under me. I got back up, got in a fight and so far, I’m winning it. I might get knocked down again, I understand that, and I will get back up again.

My wish is that everyone everywhere would pay attention to what their body is telling them. Persistent coughing, pains that won’t go away, anything that seems out of the ordinary, go talk to your doctor. Go to as many as it takes until you are satisfied with the answers. Don’t worry about hurting doctors feelings by going elsewhere for another opinion. Don’t panic if it is a cancer diagnosis. Find out exactly what type it is before reading the entire internet. Ignore the statistics, we are people not numbers. Don’t be afraid to travel to a reputable treatment facility where ever it might be. Make sure you are fully confident in the team you select. A huge weight will be lifted from you with that faith. If you are in an occupation that puts you at a higher risk, demand tests for early detection. Lung cancer is usually advanced by the time of diagnosis. Listen to your body. Get it checked.

At first, I assumed that lung cancer was a death sentence. I quickly learned that it didn’t have to be. I was offered hope and I was inspired by the many survivors I met along the way. Hope, inspiration, faith, a positive outlook, family, friends and oh yeah, never underestimate the power of prayer. You can do it!

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