Advocate for Yourself

When we are diagnosed with lung cancer, it is almost always a shock. Whether it is caught early or late (the usual case), it is like a fist in the stomach to us - and everyone who loves us. It is important to put on your boxing gloves as soon as you can possibly recover from the shock and start fighting for yourself.

This was made all the more important to me just the other day. I was approached by someone in an online community who wanted to know about the treatment I receive. I have been in a clinical trial for nivolumab or Opdivo, an immunotherapy, for over two years now. Word is getting out about immunotherapy and the hope it offers many of us with late stage lung cancer.

This woman was 61, the mother of a seven-year-old and a six-year-old German shepherd. She had Stage IV lung cancer. She was given one infusion of chemotherapy, which made her very, very sick. Her oncologist told her she was not a candidate for chemo so she needed to just go home, get her affairs in order, and prepare to die.

When I met her online, she had rehomed her dog and was taking her daughter to relatives to live during that week. She had completely followed her doctor's advice. She was simply preparing to die. It broke my heart. And, it made me angry.

Why would an oncologist give up so easily on a patient? And, more to the point, why would a patient give up that quickly?

So, how does a lung cancer survivor best advocate for themselves? Here are some ways that I have personally advocated for myself. Maybe some of them will help you, as well.

• Never take no, or inaction (a form of "no"), as the final answer. Keep fighting. Your life is most important to YOU! Don't give up. If one doctor tells you to give up, find another. Until you take your last breath, keep fighting.

• Research your doctor. What do others say about him? Where was he educated? Is he interested in research? Is he with a private practice or a university hospital?

• Not all treatment facilities are created equally. The US News and World Report publishes a list of best hospitals every year. The National Cancer Institute designates certain hospitals that have been proven to deliver cutting-edge cancer treatments to patients.

• You know your body best. If something doesn't seem right, make sure your doctor knows. And takes it seriously.

• My oncologist, somewhat jokingly, tells people that he works for me. But, in the end, that's the truth. He does. If, at any moment I decide he is not doing an adequate job for me, I can fire him. I have no contract with him. I do not have to continue trusting my life to him if he loses my faith. The same is true for you in your relationship with your doctor(s). If you do not trust them with your life, because they indeed hold your life in their hands, fire them. Find one you trust completely.

• Conduct your own research. Look at respected sites, such as LUNGevity, American Association for Cancer Research, Bonnie Addario Lung Cancer Foundation, American Cancer Society, American Lung Association, Free to Breathe,
  the National Institutes of Health (NIH), etc. Make sure that you can differentiate between someone's opinion and vetted study results. There are lots of people out there who espouse quick cancer cures, but I personally am going to trust my life to clinical trials and to doctors who have invested a great deal of time and money in learning how to treat my cancer. If you are aware of what is out there, you can advocate for yourself. Unfortunately, not every doctor is right on top of what the latest treatments are.

• Join support communities (in-person or online or both). It means a lot to spend some time with others who "have been there, done that." Most of us realize that the general public simply does not understand what it is like to be diagnosed with cancer. I think being diagnosed with lung cancer, the most stigmatized of all cancers, makes the misunderstanding by others even greater.

• One organization I have associated with is LUNGevity. It is dedicated to funding research for lung cancer and to providing HOPE to all lung cancer survivors. If you want to spend time with others who have lung cancer and exude HOPE, get involved with LUNGevity!

• Spend some time spreading the truth among your friends and acquaintances! Unlike what the general public, and unfortunately, even many doctors, believe, lung cancer doesn't just happen to smokers. It doesn't matter if you smoke or don't, are white or black, male or female, young or old, skinny or fat. Lung cancer happens to people with lungs. 

• Try to maintain as normal a life as you can. Eat as healthily as possible. Drink plenty of water. Exercise as much as you are able. I walked my two dogs every day during chemo. Sometimes, I could only manage a couple of blocks, but we got out and walked. Smile, even if you don't feel it. Watch happy movies and laugh. Cancer is an awful disease and none of us want it. But, it doesn't have to consume your every thinking moment. And, it shouldn't.

• Start a binder or a file where you keep important test results and CD's of all of your scans. Make lists of questions you have for your doctor so you don't forget when you get into his or her office. It sometimes also helps to take along a friend of family member to doctor visits. Two sets of ears are nearly always better than just one, especially if you receive some shocking news during the appointment.

It is hard enough to be diagnosed with cancer. But, when you are diagnosed with lung cancer, it is a double whammy. The stigma that associates with lung cancer can make people look down on you or discount the importance of your disease and your fight. 

Keep your head up. Whether or not you smoke or smoked, lung cancer is a formidable foe. And, no one deserves to die from lung cancer; no one deserves to be looked down upon because of lung cancer. Don't be ashamed.

And remember, there is hope. Always, there is HOPE!! 

Happy Birthday, Barney

Six years ago, on February 7th, my boy Barney was born. He came home to live with us on April 1, 2010. He has been a delight since the day he came into my life.

Such a cute little fellow!! Well, I thought so, but not everyone did. My mom came over shortly after I got him. Her first words were something like, "That's the ugliest little dog I think I have ever seen." You decide ...

You're a little fellow ... will you be staying?

Hi Fluffy! Can we be friends?

Can I play with you, Cotton?

He may not have been the most adorable puppy, but he had so much personality! He has always made me laugh.

I fretted over a name for my puppy. I leaned toward Magic. It is a name that would have been appropriate in so many ways - he's been magical for me. But, my husband wasn't impressed with that name. 

Is this a nice "sit?"

Finally, a friend came by and started listing a bunch of name possibilities. When she hit on "Barney," a light came on. My mind went to Barney Fife on the Andy Griffith show ... and my gangly, funny little puppy seemed like a perfect match to that name. So, he became Barney.

This dog has been a perfect match to me. He's a happy soul. If we're lying on the couch, he's right there with me, happy just to be near. If we're going for a walk, he's ready and excited to go. And, if we walk onto the agility field, my little man is an anxious performer.

Just three weeks after I brought him home, our grandchildren came to live with us for several months. On top of my regular responsibilities, I now had a 10-month old, a 3-year-old, and a 7-year-old to raise ... and a little puppy to try to train... When I wasn't at work... Or cooking. Or cleaning... 

He was as happy as could be to have Fluffy the cat, Cotton (his temperamental sister), and the three human children to play with. To this day, he loves it when the children come to visit. But, he didn't get nearly as much attention and training as he would have or that I planned during his earliest months. 

Some dogs might have suffered from that lack of training, but not my Barney. When he was finally able to begin pre-agility classes (after the children returned home), he was a super star. 

He is such a stable boy. Rain, thunder and lightning don't bother him in the least. I can think of little that bothers him, except sharing me with any animal other than his sister.

He was nearly three when I was diagnosed with cancer. We were on a roll in agility when I learned I was sick. This little boy was doing amazing things - he's always been such a steady little partner. The only question I really had for my oncologist after learning I was sick was whether I could continue running agility with my Barney.

We had to quit agility classes because I was either too sick or too exhausted to go. But, we continued to try to go to trials as we could. And, he never let me down. 

Looking back at the spreadsheet where I keep track of our trial experiences, there are only one or two times when I felt like we just didn't connect as a team. For the most part, he gave his all. 

Here are some of his latest runs. I am so proud of where he is. Where we are as a team.

Exercise is said to be good for chemo brain and for fighting cancer. Learning the courses stretches my mind. I love being around all of my friends and their dogs. It brings me great joy. I would be willing to bet that my agility addiction has helped keep me healthy.

But, while agility plays a big part in my life and the lives of my dogs, it isn't everything! Really! It isn't! 

My heart just swells when my boy lays his head on my legs when we're sitting on the couch or when he gets on the back of the couch and hangs his leg over so that it touches me or lays on my chest and sleeps with me there.

My favorite memory of all of my boy is the one where he came and laid on my chest for hours soon after I was diagnosed. Of course it is silly, but I felt like I could feel the tumors being pulled right out of me by his body heat. I was so, so sick, but his love and devotion comforted me more than I can say. 

Happy birthday, precious boy! May we have many, many more together!