Being an Advocate
I learned today that I can be a voice for lung cancer! I signed up to be an advocate for Lungetivy. I am excited to get my enrollment packet. This means I can go to summits, talk to our congresswomen and men, and be a voice for those affected by lung cancer. I am also an Ambassador for Lung Cancer Fighters through CTCA. I am listed in their directory as an advocate for support and anytime I go to CTCA, I get to lead groups and show new patients around the hospital. I am doing more than just surviving...I am thriving!
I was tired of sitting here and feeling helpless. I know that I am good with my words...and I can use them to uplift a fellow cancer fighter in need. God is working in me. This is what I am going to do with the time He has given me. I may not be able to work, but I can be a voice, a mommy, a wife, a daughter, a friend, and a teacher. I am ready to do God's work.
I didn't sleep very well last night. I had so much trouble breathing...and then I awoke with a killer headache followed by a seizure. I have not felt well all day. This has been the worst I have felt in a very long time. Luckily, my gorgeous husband is off and is cooking us dinner tonight (he's making tacos...and we loooove his tacos). I am so blessed to have a wonderful family. When I am sick, they all pitch in to take care of me. I am amazed at their strength.
I have been lucky to have not lost any friends through this journey. I have actually gained friends. You take a risk investing in relationships with people who have terminal cancer. You place yourself in a vulnerable zone. It often ends sadly and it can be extremely painful. But...it will be worth every second. Thank you all for sticking with me.
Lung Cancer Blame Game
Now that I am going to be an advocate, I will be sharing lung cancer facts as well. The information that I am sharing with you is from a lung cancer survivor and journalist. You can find more of the article here: http://www.fredhutch.org/en/news/center-news/2015/05/lung-cancer-blame-game.html
Lung cancer is the leading cause of cancer deaths in the U.S. Most patients are diagnosed late (symptoms usually don't present until the cancer is advanced) and screening methods that can detect the disease at earlier, more curable stages have only recently become available.
This year alone, about 221,000 people will be handed a lung cancer diagnosis and half will die within a year. All total, lung cancer kills more people every year than breast, colon, prostate, and pancreatic cancers combined. Its five-year survival rate is a meager 17.8 percent. Five-year survival rates for breast and and prostate cancers are 90 and 99 percent, respectively.
Sadly, funding for lung cancer research is as low as the death rate is high. According to a 2013 post on the website for the American Society of Clinical Oncology, or ASCO, "many individuals will spend more annually on round-trip airfares than either the U.S. or the United Kingdom spends on research per lung cancer death.
Why the paucity of funding for lung cancer research?
Many point to its association with smoking, even though lung cancer is not exclusively a smokers' disease. According to the Centers of Disease Control and Prevention, at least 18 percent of people diagnosed with the disease here in the U.S. have never smoked.
Still, a pervasive stigma exists, a phenomenon aptly described by a team of Oxford researchers in one of the first studies on the subject.
"Whether they smoked or not, (patients) felt particularly stigmatized because the disease is so strongly associated with smoking," they wrote in a 2004 paper in BMJ. "Interaction with family, friends, and doctors was often affected as a result and many patients, particularly those who had stopped smoking years ago or had never smoked, felt unjustly blamed for their illness....Some patients concealed their illness, which sometimes had adverse financial consequences or made it hard for them to gain support from other people...A few patients worried that diagnosis, access to care, and research into lung cancer might be adversely affected by the stigma attached to the disease and those who smoke."
Ten years later, not much has changed.
Two recent studies found an association between lung cancer stigma and delayed diagnosis and treatment. Another pointed out the profound effect stigma has had on research funding and quality of care, both with regard to physicians' attitudes toward patients and patients' attitudes towards themselves. A fourth compared lung cancer stigma with that of four other cancer types.
Not surprisingly, lung cancer beat all corners.
-Diane Maples/ Fred Hutch News Service; May 7, 2015
Nobody Deserves Cancer
Yes, I am a former smoker (quit again for two days now), but I have never once felt that I deserve lung cancer. I know there are consequences for our actions and that smoking does cause lung cancer, but I don't deserve to be this sick. Nobody deserves it. Should I have never smoked? According to my doctor, I am rare in the fact that my lungs cannot tolerate any irritants, especially cigarettes. So, no. I should have never picked up the habit. How was I to know that I would be sitting here dying of lung cancer at 35? Nobody can predict what the future holds. Many people smoke their entire lives and never get lung cancer. Others never smoke a cigarette and find out they have lung cancer. Life is unpredictable and nobody deserves cancer of any form.
By becoming an advocate, I hope to change the stigma of lung cancer and help get it the funding it deserves. We deserve longer lives and advances in treatment. We cannot do that without the proper funding. Don't leave us out just because we have lung cancer. None of us asked for this. Here's to changing the face of lung cancer and ending the stigma that comes with it!
Take a Break From the Usual
I know that I have mentioned several times how having lung cancer has changed my entire perspective on living...but I am amazed at just how much of an impact it has had on me.
For me, it's easy to get into a rut. I do the same thing each day, day in and day out. Even my weekends are perpetually the same. Think about it, we all live the day to day. How often do we really do something different when we can? Mostly we fall back into doing what we always do, even when we can choose something else- something we've never done before. It's called routine...and we are, in general, comfortable with routine.
"Something different" doesn't have to mean "wild and crazy". Little changes in your daily routine can open your eyes to things you've never noticed before. For instance, I wake up extra early every morning just to hear all of the sounds of the different birds singing. Every morning, I hear a different sound than I did the morning before. Change up your route to and from work...get away from the scenery that is already so familiar to you. Try a different restaurant, listen to a different genre of music...or choose a book from a different section of the library...a movie you generally wouldn't go to see. Soak in all that life has to offer. You don't have to have cancer to change your perspective and see the beauty that is "life".
Rearrange your furniture. Brighten rooms with fresh hand-picked flowers. Change your curtains. Repaint walls. Hang new pictures. Go for a walk with a scenic view. Learn a new craft. Introduce yourself to someone you don't know. Take a break from the usual. Learn to love life again. Don't let life get so far ahead of you that you forget to enjoy it. I finally know what it means to "take time and smell the roses".
"Do not be too timid and squeamish about your actions. All life is an experiment. The more experiments you make, the better. What if they are a little coarse, and you may get your coat soiled or torn? What if you do fail, and get fairly rolled in the dirt once or twice? Up again, you shall never be so afraid of a tumble." -Ralph Waldo Emerson
I may be horribly sick, but damn...I love the way I get to spend my time.
What it Means to be Terminal
While I rationally know what it means to be terminal, emotionally, I still have a hard time comprehending it, or rather, accepting it. I hold out hope that we are just one drug discovery away from a cure. And that it'll be in time.
This is the hardest part of my cancer diagnosis. I can accept everything else about my cancer but this. It is so difficult to wrap my head around "terminal". It is even harder to answer the plethora of questions my kids ask me on a daily basis. It is heart-breaking to read my daughter's status updates on Facebook. Each one of them show her fear of losing her mother...and that shatters me. What child should ever have to fear losing the one person they count on the most? And though I know that none of this is exactly fair, I also know that this is life. Again, life is very unpredictable.
My mother had a heart-attack three years ago. She had what doctors' call the "widow-maker". 99 percent of her heart was blocked. She was air-lifted to Denton and I can remember the shear panic I felt thinking I was going to lose my mother. Even I, at 32 years old, could not picture my life without her. She is my best friend and one of my biggest supporters. I have no idea what this is really doing to my three children on the inside.
Anytime I talk about the future, my eyes are crystal-clear, but they tend to flicker from side-to-side, vacillating between uncertainty and certainty. We all have to die and it can be at any time. I just happen to know my time more than those without a terminal illness.
You always believe there is time, until there is not. Nobody can get back the years they have lost with me, but I am making huge strides to include those people that I miss and love very much in my future. All we can do is the now. All I need from the people I love the most is to just be here in whatever capacity I need them (a good cry, a laugh, just to listen) and that will be enough for me.
My Challenge for You
"How do I communicate with my friends and family about my cancer, and how do they cope with it?" I really cannot answer this question other than, I am very honest with all of them. My style has always been to be direct; even before cancer. But, I tell them the truth and expect that they are telling me their truth, too. My relationships with my closest friends and family are all intense. It's hard not to be when I have a pretty good feeling they are going to watch me die. And I'm very okay with that.
How they cope with my cancer is very hard for me to answer. So, here is my challenge to you. Over the next few weeks, I am asking my friends and family to send me snip-pets or notes letting me know how they cope with my cancer (thebrocks2001@att.net). I will post these notes one at a time on my blog as a reminder of why I fight. They say 1 in 14 will be diagnosed with lung cancer. That leaves 13 people who have to cope with their friend being diagnosed. I think this is a large enough group that is worthy to hear from.
Please send your notes either to the email address above or to my Facebook inbox. I am excited to hear from you!
In the meantime, I am excited that I am actually doing something for the lung cancer cause. So far, in little increments, but I am doing something; nonetheless.
I may not be changing The World but I'm doing something about My World.
Love you all, mean it!
Shanna xoxoxo
gofundme.com/hope4shanna (Please donate if you can. We are in dire need of assistance to get us to Tulsa and afford medications that my husband's insurance does not cover. If you cannot donate, please share my cause with your friends. Thank you so much in advance!)
facebook.com/hope4shanna (Join our prayer warrior community and stay up to date whenever I post a new blog. My husband also updates all of our appointments on the page. God Bless You!)
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