Living a life with lung cancer
By Annette Birch
Published at The Capital Post, http://thecapitalpost.com/living-life-with-lung-cancer-p-24735.html
Richard Heimler, 53, was diagnosed with lung cancer nine years ago and has been on permanent disability leave since 2007. Today, he spends his time advocating for more funding for lung cancer research, his family and using his fundraising skills from his last job to raise money volunteering for a non-profit in downtown New York with gay lesbian youths who have been psychologically or physically abused and need a new environment to flourish. This is his story as told to Annette Birch.
“It was in May 2004. I was coming back from a business trip in London and I just came off the plane and I just had heart palpitations and I didn’t understand why. I went back to my apartment, I woke up the next morning, I called a friend of mine who is a cardiologist. And he thought I might be having a heart attack. So I went to his hospital and we did a battery of tests and on one of the X-rays he saw a very small spot that was not related to the chest pains. The chest pains could have been capital pressure for being on the plane for so long.
I do not have a medical background, I did not know anything about lung cancer, I did not know the statistics. He just said it was a spot. A few days later I had a PET scan and I lit up at the PET scan and we knew it was more serious than scar tissue. So we started with doctors in the nearer community and had a biopsy and then it was confirmed that it was lung cancer.
I was numb and I really had no idea of the magnitude of my illness. And I did not know at that time that 60 percent die within the first year, 90 percent die within five years, that every year 200,000 are diagnosed. I didn’t know and that was probably a good thing. My mother has a medical background because she is a genetic counselor so I kind of let her run with everything. She became my primary advocate and she was the one who arranged my doctor’s visits and told me where to show up and when. It was a while before I really understood the severity of my health situation.
At the time I just needed to know what I had to do in the moment to get the best chances to survive. Because I was a healthy 44 year-old the doctors all felt strongly that we should remove my entire lung. Again, I did not know how that was going to change my life. The problem with that for me is I have scoliosis so my left lung is compromised by my spine so at the time it left me with only 32 percent breathing. This lung does 50 percent and the other does 48, but mine was only doing 32. So they were very concerned about that. But again, it gave me the best chance to survive, my children at that point were 16 and 14, and they were just too young to lose their dad. I was going to do anything I could to stay alive.
I worked for two years but it just became too difficult for me to travel, to carry things and I didn’t have the stamina to work a full day, a full week. And at that time I was taking a very debilitating treatment and it was very difficult to also work at the same time.
In 2006 my cancer had taken a turn for the worse. My pulmonary function was at a level that was low enough to qualify for full-time disability from social security and because of my treatments and my physical health I was not able to continue with the responsibilities I had at my last job so I went on permanent disability from that company and also with permanent disability from social security because I just cannot work physically and mentally a full time week 40 or 50 hours a week.
[Then] three years ago I was diagnosed with tumors on my left lung. So it was very debilitating for I had been on chemotherapy for two solid years. My doctor told me about these clinical trials and we thought we had nothing to lose because the chemotherapy wasn’t killing the tumors, it was just stabilizing them. Phizer created this drug, called Xalkori. It was approved by the FDA and it only works on three to five percent of lung cancer patients which has a gene which is the ALK. I have that gene. So instead of taking debilitating intravenous chemotherapy I am taking three pills in the morning and three pills a night, and that’s it.
Being on this trial has meant all these terrible effects of chemotherapy I don’t have them anymore. From a vanity point of view, I wasn’t going to lose my hair, my skin color wasn’t going to look different and I wasn’t going to lose weight, have a bad appetite or bad taste. With the medication I have now there are no side effects so I live the healthiest I have been in nine years which is great. I look like a healthy person. My breathing now is up to 37 percent. So I can really live a normal life at least what I call a new normal and I can do things; if I want to travel, to volunteer, go to the movies, visit my friends. Now, it may not be curable but it is treatable and it is livable.
I have had seven re-occurrences. I want to believe that I am the same person that I always was when it came to enjoying life, living a good life, fulfilling life. For my kids, my family and my friends I proved to them that I was still me, that I could still lead a very active life.
I call myself a reluctant advocate because this was not my platform when I was 43. But I now know that I have a responsibility to help raise lung cancer to a national and international health priority because of things like the smoking stigma and I never smoked. After heart disease lung cancer kills the most people but you never hear about lung cancer and celebrities who are diagnosed with lung cancer they don’t want to talk about it. I think it is important for me as an advocate to get the word out that lung cancer needs to be raised to a new level of attention when it comes to research, funding, treatment, things like that. The other part for me is to show people that you can live a productive life with lung cancer that you can beat the odds. Now with all the gen-personalized medicine it is a very different world than when I started eight or nine years ago and so the future is very promising.
With lung cancer you never get to a point where you can say that you have beaten it. Lung cancer, you know I have gone two years, three years without a re-occurrence and then you get a reoccurrence. I had two in the last year but right now the scans are clean but every three months I have new scans and you just don’t know what they are going to tell you. The reality with lung cancer is that very few people survive. I am lucky that I lived nine years with it. I hope to live 30 more years. But the thing you hope for is to live the longest life span between recurrences and also to stay alive long enough until a better treatment comes along that gives you a better change to survive.”
Photo by Roswell Park, http://www.flickr.com/photos/roswellpark/6344065167/sizes/s/in/faves-87276657@N03/