by Janet Brown
I was diagnosed December 22, 2006 at the age of 47 with NSCLC – Adenocarcinoma, Stage 4. (cancer started in my right lung, spread to the spine in 3 places and the brain). My only symptom was a bad back which I thought was a slipped disc. Up to that point I had never had any health issues. I am a never smoker.
My first oncologist wanted me to go through radiation and then chemo – Taxol/Carbo combination. After going for a second opinion I tested positive for the EGFR mutation and changed course. I went through 6 weeks of radiation and have been on Tarceva since February 2007.
The radiation resulted in double vision which has improved with time. Tarceva comes with many side effects too.
Besides family, and church, LUNGevity was my first source of support. It is a place I can go to for answers and support, laughter and understanding. I don’t post as often as I used to, but I still go there to check on friends, and find answers to questions. Many of those same people I am now “friends” with on Face Book so the support continues there. I also go to a Lung Cancer Support Group at Smilow Cancer Center at Yale New Haven Hospital. That is a warm supportive place. The group meets every other week. The Cancer Center itself is also a huge support system. I feel very grateful that I live close enough to use it.
Some of the challenges for me have been dealing with the side effects of Tarceva, worrying about money, worrying about how this is all affecting my children, worrying about how this is all affecting my children, worrying about how this is all affecting my children. The worst part about lung cancer is seeing the sadness in my children’s eyes.
I would estimate that at least 99% of the people who find out I have lung cancer ask, “Did you smoke?” I actually had someone accuse me of lying when I said no. I find that instead of warmth and sympathy, people are more likely to change the subject, look away, and even physically back up when they hear lung cancer.
Now when people ask me if I smoked – I give them the lung cancer facts and educate them. I am actually thinking of making up little business cards with the facts to hand out! I have tried to be vocal about my illness to get the facts out there and make people aware. I was interviewed for the Cancer Center publication and on the local WNPR station. Also our support group set up an interview in the New Haven paper for Lung Cancer awareness month.
The more information we get out there – the less the stigma will be!
My family is closer than it has ever been. We have always been close and loved the time we spent together, but in the last 4 years we have made some wonderful memories and cherished each other. I appreciate every day so much more, sunny or stormy – each day is a gift and I try to always remember that.
If you could give any advice or words of wisdom to a newly diagnosed patient, what would it be?
Don’t listen to the statistics and time lines.
Surround yourself with positive people. Surround yourself with love. Take care of yourself. As hard as it is, put yourself first. Accept help. It is hard. But remember, people want to help; you are giving them a gift by letting them. Take naps. Sit at the beach, or your garden or wherever you feel alive – and breathe.
Fight for yourself. If you don’t understand something the doctor says – ask. If something doesn’t seem right – check it out. If you don’t get the answers you need – keep asking, keep calling. GET A SECOND OPINION!!!! (And a third and a fourth if need be)
Bring someone you trust with you to your appointments. Have them take copious notes. Bring written questions you have to the appointment. (if you don’t write them down, you will forget them) Ask for copies of all your tests. Demand a quick wait time between testing and follow up – they CAN do it within a couple of days – they just don’t always let you know that.
When you are ready – join a support group – either on line – or in person. You will find others who know what you are going through, who will have helpful suggestions and who will show you that people ARE living with this disease.
It gets better. I know it is hard to believe – the beginning is a “dark time” – but once you have a diagnosis and a plan – things will settle down. You will be able to breathe again and laugh again -there IS hope.
A survivor is someone who does not let the disease define them, does not let the disease rule their life and is not a victim!