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!! 

Lung Cancer Awareness Month

It's November. Nearly. It will be in just a few hours. So, finally, Pinktober ends. And Lung Cancer Awareness month begins. I'm afraid we won't see a flood of white ribbons everywhere. For the most part, people just don't really care about lung cancer. Which seems pretty weird to me since so many people will someday get that diagnosis themselves (or watch a loved one go through it).

Sooooooo, this is a month when I will once again flood my Facebook account with information about lung cancer. The general public may be ill-informed, but I can assure you, my friends should be well aware that the only thing it takes to get lung cancer is lungs.

It seems that every year I find ways to get a little more involved in awareness and advocacy. And, I'm really enjoying the role. I'm finding myself seeking out more and more ways to get the word out, besides what I do on Facebook. I think what I do on Facebook is not all that effective. Most people, I think, just scroll past my posts that have to do with cancer.

Breathe Deep DFW 2015

The month and Lung Cancer Awareness begins with a walk at River Legacy Park in Arlington, TX, on November 1. It was a cool and cloudy day. There wasn't as large a crowd as I would have liked to see, but the ones who were there had a great time, I think.

Of course, the event was organized to raise money for lung cancer research. The goal for the event was only $45,000. But, we didn't meet that. Not even close. We were able to raise a mere $23,712.95. Who gave 95 cents???

I don't know how hard everyone else tried to get their friends and colleagues to donate. I worked hard for the $1,420 I finally managed to raise. I even enlisted the help of Cotton and Barney, thinking maybe they could reach my dog friends when I couldn't. Didn't work. No one even bothered to watch their video.

I got my feelings hurt when people didn't respond to my pleas. I took it very personally. On the other hand, I was beyond touched by donations I got. They were mostly given by people I really didn't expect to contribute. Just as NOT getting donations from people I thought would support me broke my heart, the contributions I got put a big smile on my face and song in my heart. Truly.

I can honestly say, I'm glad the fundraising is over with for awhile! I am obviously not very good at it and it puts me on too many ups and downs.

So, with that said, the event was a lot of fun. There were bounce houses, a DJ, lots of picture taking, and some dancing! Oh yeah! And a 1.2 mile walk or 5K run.

Lung cancer survivors, supporters and caregivers KNOW how to have some fun!!!

It is hard to believe that I only met the ladies in the picture below at last year's event:

How I love them. Sherry (in the middle) is young and was athletic. Not a smoker. She's missing part of a lung. The two of us started the team for this year. We named it Hope & Giggles because we have a ton of hope and we love, love, love to laugh and giggle! Her mom, Susan, in the blue shirt, is one of the best supporters ever.

Gail is a 27-year survivor of cancer. She's had breast, thyroid and lung cancer during those years. You'll never met a person with more heart or joy for life.

It was wonderful to see them at the event again this year.  If you look closely, you'll see Katie Brown photobombing Susan, Sherry, and Gail! Katie is responsible for the fact that there is a walk. She began them after her dad passed away from lung cancer. We lung cancer survivors are especially lucky to have her in our corner. She is a tireless worker and advocate.

My friends, Cathy and Courtney Kuebler, joined us on the walk. It meant the world to me that they were willing to give up their Sunday to come to Arlington (not a short trip for either) and spend it on the walk with me. They are beautiful inside and out and I am so proud to call them friends.

My mom decided that she wanted to support me with her presence. She asked me if I thought she could make the walk. Well, I honestly didn't know for sure, but figured we could give it a try. If she found she couldn't make it, we'd figure out how to get her back to the car.

Mom hates this picture. She thinks it makes her look likes she's 105. I don't think so. I think she looks beautiful and younger than her 85 years.

She enjoyed coming and meeting all of my friends. And yes, she made that 1.2 mile walk with no problems at all!

Smiles. Smiles Everywhere.

You know, when I was first diagnosed with lung cancer, I didn't think I wanted to be around others with cancer. I've never been particularly depressed or sad or down-trodden by my diagnosis, but I assumed I was an exception. I've found out that I was wrong. Way wrong.

Sherry and I pretended we had run the course and won!! (We HAD finished the 1.2 mile walk, but we pretended we had done more!) Notice the smiles. They're not fake or contrived. These are two lung cancer survivors living and loving life.

Gail (27 years), Donna (3 years), Tom(11 years), Sherry (1 year), and Susan ... 4 survivors and an awesome mom. Plenty of smiles!

This picture was taken by Katie or Hunter Brown of some of the cancer survivors who came to the walk. We are loving life and one another.

As The Month Progresses

I will be trying to find ways to get the word out that lung cancer hits people with lungs, not just smokers.

On November 7, there is a workshop/conference for lung cancer survivors that some of my friends and I will be attending. It is a great time to get together and possibly we'll find new ways to get involved while we're there.

On November 21, I'll be at the Dr Pepper Starcenter in Plano at a Free Skate. I really don't know much about the whole thing just yet, but I'll be handing out literature and talking to others about lung cancer.

If I can get myself in gear, I'll try to write some letters to the editor or articles for online publications or something. I have a blog to write this week for another group. It is to deal with advocating for yourself. Maybe it will get my creative juices flowing!!! :)

So ... here we go ... I hope I don't lose any friends over my advocacy this month. I guess if anyone unfriends me, they weren't friends to start with.

In case you don't know yet:

All it takes to get lung cancer is lungs.

Nothing more. Nothing less.

Lung cancer doesn't just happen to smokers.

Lung cancer happens to people who have lungs.