When I think about my chemotherapy experience, I think of three things: vomiting my guts up, severe constipation and extreme fatigue. My chemo treatments were on a 3-week rotation. I suffered mightily during the first week, felt better the second week, and felt pretty darn good by the third week. The vomiting only lasted a few days, constipation lasted a bit longer.
Haha! Chemo brain … is it real? Well, I thought of it as a topic while on another site. I only had to find the right tab to get to my blog site. By the time I clicked over here, I had already lost the idea I had… Oh yes! Chemo brain reigns here.
For many years, doctors didn’t believe chemo brain was real. (Easy for them to say – they didn’t have to suffer with it.) Now, however, it is widely accepted that chemo brain is a very real phenomenon.
Mayo Clinic includes information about it on their Website.
It frustrates me a bit to see that they do not believe chemo brain is caused solely from chemotherapy. More studies, they say, are being conducted. I suspect that they want to say that the stress of having cancer contributes to the “cognitive impairment.”
Here’s what I know from a personal stance. My mind worked quite well prior to being diagnosed with lung cancer. I reveled in doing long, involved research studies. I loved reading books. I wrote state and federal grants for a living.
Today, as noted above, I often cannot remember a thought for even one minute. I do not enjoy reading because, again, I don’t retain what I have read for a long enough time for a book to make sense. Give me technical information to read and my mind shuts down completely.
Not so long ago, I made my living, in part, by reading and dissecting information in the Federal Register. There is no hope that I will understand what I read in that government document now.
Before chemo, I had a good vocabulary. Now, my mind goes blank. I know I know a particular word, but for the life of me, I can’t think of what that word is. It is so frustrating!! I can generally come up with an alternative word to use, but the alternative is often not as good as the one on the tip of my brain would have been.
I think one of the hardest things to adapt to regarding chemo brain is how I lose people’s names. Gone. Doesn’t matter how much I like a person. It doesn’t matter how often I am around them. Their name or the name of their dog or spouse or child is nowhere in my head. I draw a complete blank.
I have been known to get my phone out and scroll through the contacts until I finally come across the person’s name that my mind has lost. Thankfully, I do recognize it when I see it! This memory lapse is frustrating and embarrassing. I don’t know that anyone would understand that it truly has nothing at all to do with how much I like a person. Nothing.
So, after dealing with this memory fog for over five years, I’ve come up with a few ways to deal with it. I would love to hear what others do to combat chemo brain. Maybe we can come up with a viable resource for cancer patients!
Ways I Combat Chemo Brain
Calendar – my online calendar is my greatest tool. If an event or date does not make it to my calendar, it doesn’t exist for me. Sometimes, even if it does make it to my calendar, I forget it, but the calendar gives me a fighting chance! I set the calendar app to remind me several times about events that I really want to be sure to remember.
Lists and notes – I have them everywhere. I bought a Samsung Note phone so that I could easily make notes on there, but I have to say that I am most likely to still use a pen and paper. I’m old school. There are two major problems with my lists and notes – (1) if I am not near my pen and paper (or phone) when the thought occurs, the idea will leave before I can memorialize it and (2) I end up with lots of notes and lists in lots of places … and I am just as likely to lose them as not.
Honesty and humor – I warn people that my memory is no longer any good. There is not much I can do about it. The more I stress over it not being good, the worse it gets. So, I have found that, for me, just telling people upfront that it is not personal, but my memory is just not what it once was any longer. Hopefully, they will understand. If they don’t, there’s really nothing I can do about it.
I tell people I wake up in an all-new world every day. It is amazing how many events my family will discuss that leave me staring at a blank screen in my mind. I might remember parts of the event, but not specifics. It is weird.
I had memory lapses before I had chemo. But, trust me, they are not the same as chemo brain. And truthfully, even though I will usually just smile and shake my head “yes” when someone tells me they have chemo brain, too, even though they never had chemo, it really frustrates me for them to make light of my condition.
The fact is that they might indeed have issues with memory, but they do not have chemo brain. It is a phenomenon that is impossible to adequately describe, really. But, it is far more than just a simple memory lapse.
What about you? Do you have chemo brain? What ways have you devised to help you combat it? What do you think when people who have never had chemo say they, too, have chemo brain?
I’d love to hear from you!
I am a latecomer to many things technology. I was once on the cutting edge, but that was now many years ago, I hate to admit. I can usually click my way around to figure out enough to be dangerous, but I am definitely slow when it comes to technology these days.
I was once active on Facebook. In recent months, I have decided a complete hiatus from it is healthiest for me. I signed up years ago for Instagram. I think I used it once. I signed up for Twitter so that I could participate in regular Twitter chats about lung cancer. Unfortunately, I find them difficult to follow and because I don’t know Twitter, difficult to understand.
Snapchat, nope. Pinterest and Google+ … well, yeah, but I don’t actually do anything much with them. (I do save some dog treat recipes to my Pinterest account.) There are other apps that I had never even heard of until recently that obviously haven’t made it to my list of favorites!
What’s all this have to do with anything, you may be asking…
Well, I am also new to audiobooks.
Chemo treatments gave me chemo brain. Chemo brain is a phenomenon that is real and that is different than anything anyone else experiences. Most of us who have it … and way too many of those of us who have had chemo do … hear friends and acquaintances try to commiserate by saying, “Oh! I have chemo brain, too! But, I never have had chemo.” Well, maybe, but doubtful.
One of the gifts of chemo brain has been the robbery of my ability to read. I used to love to read. I was a voracious reader from the time I was a young girl. I well remember my mom dropping me off at the Midland library, where I would wander the aisles for hours. She would come pick me back up and I would have checked out a big stack of books, all of which I would read before time to return them.
After the advent of chemo, concentrating long enough to read a page, much less a book, became difficult. Remembering what I had read was just not happening.
So, I quit reading. In the last year, I have managed to read a few books, but they have to start off very engaging. And, many may start off engaging, but I just can’t read them. So, again, I usually just don’t try to read much.
In the last few weeks, I have discovered a new way of “reading.” Audiobooks. I have now listened to two. One, by Greta Van Susteren, Everything You Need to Know About Social Media (Without Having to Call a Kid), taught me all about the social media apps I need to learn more about. It was a book I enjoyed a lot. I want to see the hard copy now.
Today, I listened to A Man Called Ove. It is a nine-hour recording. I listened straight through. I admit that I may have slept through a couple of parts. Not because it was boring, but just because I laid my head down … and when I did, I fell asleep!
No, the book wasn’t boring at all. It was so entertaining. I never thought that a “book on tape” could hold my interest, but I was wrong. My only problem with them is that once I start them, I don’t want to stop. I want to listen all the way through. And, nine hours is a long time to invest all at once! Of course, because I am a slow reader under the best of circumstances, nine hours is less time than I would have likely invested if I was actually reading the book myself, especially now, with my chemo brain.
A Man Called Ove had me laughing out loud over and over again. I was so absorbed in the book that I really never thought about cancer or disease or anything other than the book.
So, the point of this post is to encourage my friends who, like me, suffer from chemo brain to consider listening to books on tape. You can get them from your library. That’s where I have been getting mine. I am getting mine online so that I don’t even have to worry about returning them. When my time is up, the program takes them back. They’re never late!
My library offers books and more using two different apps. One is called Libby and the other is Hoopla. It is likely that your library uses these apps or similar to provide books and other resources to you.
Libby allows library card holders whose libraries participate to borrow ebooks and audiobooks. If you have a library card, see if you can find your library among those that participate. You can use Libby’s built-in e-reader or send books to your Kindle. The Libby app, which is part of OverDrive, includes an audiobook player.
Hoopla’s Web site explains its service options:
hoopla is a groundbreaking digital media service offered by your local public library that allows you to borrow movies, music, audiobooks, ebooks, comics and TV shows to enjoy on your computer, tablet, or phone – and even your TV! With no waiting, titles can be streamed immediately, or downloaded to phones or tablets for offline enjoyment later. We have hundreds of thousands of titles to choose from, with more being added daily. hoopla is like having your public library at your fingertips. Anytime. Anywhere.
Even if you can’t get out of the house, or out of bed, for that matter, a book on tape might be a really nice diversion for you. I stream mine on my cell phone and wear an inexpensive pair of earphones to listen (I did run the battery out of the first pair and had to change to the earpiece I bought to talk on the phone). No holding the book, no energy taken at all. But a nice way to forget your situation and lose yourself in a mystery or love story or comedy that makes you laugh out loud. (Try A Man Called Ove for laugh-out-loud fun.)
It just occurred to me that this is something most people don’t understand – what it is like to have cancer. Thankfully, that’s the case. Although with stats showing that one in two men and one in three women will be diagnosed with some kind of cancer, I guess way too many of us DO know what it is to be diagnosed with cancer.
There are all kinds of cancer and all degrees of severity. For instance, my stage IV isn’t the same as my friend whose stage IV lung cancer means that the cancer is in her liver, brain, and kidney.
We don’t all react to having cancer the same way either. Some of us put on our boxing gloves and face our enemy. Some try to befriend their cancer … I don’t know, that’s not one I can wrap my head around! Others hear the dreaded words and just kind of give up.
I am emotional this weekend because a list friend who has lung cancer is “rehoming” her 7-year-old daughter today. She already found a new home for her 6-year-old dog. Once her daughter is in her new home, my friend will begin to float from home to home, just waiting to die. If that doesn’t break your heart, nothing will. Can you even begin to imagine the anguish??? I can’t.
At the same time, i find myself frustrated with my friend. She had only one chemo treatment. It made her very sick. So, her oncologist told her there was nothing he could do for her. He told her to go home, get her affairs in order. And, that’s what she did.
This lady has a 7 year old … and a beloved dog. Would you just quit if your oncologist told you there was nothing else that could be done … after only trying one thing? Not me! I would have been on the computer, on the phone, in my PCP’s office … finding the next plan of action.
That’s essentially what I did back in July 2013 when I was told there just weren’t many options left. At least my oncologist gave me two options : a dreaded chemo or go into a trial. He didn’t say to go home and die. But if he had, it would have just made me fight harder. Maybe my competitive nature is a good thing!!! There is not a snowball’s chance that I would just give up.
|Give up and not fight? Never!!!|
When the place he recommended I go for a clinical trial wasn’t responsive, I went to my PCP and asked for a referral elsewhere. There’s no time to waste. That’s something you learn when you have cancer. Time is of the essence. And, when one door closes, go knock on another or another or another. Don’t give up. This is literally the fight of and for your life.
So, What’s it Like?
So, what’s it like, having cancer? You learn what you’re made of. You learn that you have strength you had no idea existed. Or I did. In my wildest dreams, I didn’t really expect to be so content, so joyful, or to feel so blessed while battling cancer.
That’s God. That’s my very deep and abiding faith. I am confident that He knows what He is doing. What my role is, in my opinion, is to live each day remaining as fully and completely as possible. I want people to see Him living in and through me as I go through this trial. I hope they do. Because without Him, this journey would be absolutely devastating.
There are lots of heartaches associated with having cancer. They go beyond the obvious ones that go along with the actual physical fight. Your strength and mental capacities diminish. It is very frustrating to know you can’t physically do what you did before or to know you should know the word you want to use, but can’t find it anywhere in your mind. It makes you creative! I often have to figure out a way to say what I wanted to get across with other words besides the one that would work best.
It is rarely discussed, except among others with cancer, but one of the harder trials those of us facing cancer battle is the disappearance of friends and loved ones. It is hard to watch life go on without you. It is especially hard when it seems you are totally forgotten most of the time. It is hard to realize that people you thought would be there for you aren’t. Having cancer is definitely an eye-opener when it comes to learning who your real and true friends are and who your good acquaintances are. It’s a painful lesson. For me, it has been the toughest part of this battle.
On the other hand, it makes those who have made it a point to stay in my life so much more special. I know that there are three or four people besides my family who would drop everything, change their own plans, drive miles if necessary, to come to my aid, if it were ever necessary.
I count myself one lucky lady knowing I have these people in my life. Many people I am in contact with feel that they lost all of their friends when diagnosed with cancer. Just when you need them the most. It feels like people think cancer is contagious. The thought appears to be, “If you ignore the person with cancer maybe you won’t get it.”
What to Say?
Of course, it could be that people just don’t know what to say. I surely do understand that. I have found that lots of people with cancer are super sensitive. They get irritated if you tell them they look good. But, don’t tell them they look bad, either!! Some people don’t want to be encouraged (“you will beat this, you are strong…”) and others don’t want to be discouraged (“my dad died of the kind of cancer you have”). Some people don’t want to hear that they are in a fight. The list just goes on and on. I have cancer and it seems like I am often stepping on someone’s toes by saying something they consider offensive. For instance, I like to say that life itself is terminal. Oh my goodness!!! Some people are really offended by that!
No wonder the general public shies away!! I don’t usually know what to say either!! I read today where someone gets upset when the nurse at her doctor’s office asks how she’s doing. Sheesh?!!! Is there anything innocuous enough that someone won’t be offended?
So, we cancer people complain among ourselves about being ostracized or forgotten, but it seems like our over-sensitivity could be partly to blame. As for me personally, there is little that you could say that would offend me. I am an open book … and I realize that it’s very difficult to know what to say.
I have taken the stance that I am going to live my life for as long as I have life. My first oncologist was taken aback when he asked if I had any questions after being told I had stage IV lung cancer. My one and only question, “Yes! Can I continue playing agility?”
Some people decide to put themselves into a cocoon when they hear they have cancer. A germ might find them. Me, I want to live my life.
There have been times when I had to be driven to class or a trial because my strength and stamina were so low. But, I was determined to go and give it my all (which wasn’t necessarily much). For me, it’s a matter of not letting cancer take my life before it takes my last breath. Wouldn’t that be letting it win before its time? Yes, I think so!!!
Here’s the truth. When I am playing agility, watching a movie, eating with friends, living, I frequently forget that I am different, that I have a very deadly cancer. I am just out having fun with my dogs and/or friends. Cancer, for me, is not my focus. It is a part of me, but it is not me. I like to say (and I believe), “I have cancer, it doesn’t have me.”
But then there are the times when you are alone in your thoughts, when you do remember that you have cancer. It can be scary. When you think that maybe today is the day your treatment quits working and there’s nothing else to try. When your favorite oncologist has the tough challenge of telling you that there’s just nothing more to try. I can imagine how heartbreaking that will be for him.
I don’t go there often. It is depressing. .. what will become of my family, my two dogs when I am no longer here? I can only pray they will be okay.
I am not worried for myself. I take my last breath here and I end up in Jesus’s arms. But, what is the time between hearing there’s no more hope and drawing that last breath going to be like?
And, when you have a late stage cancer with a lousy prognosis making long-term plans becomes more difficult. I look to the future, but when it comes to planning something some months or a year away, I won’t make any cash deposits. Which, since I am outliving expectations, means I don’t get to do some things I would enjoy and would have felt fine to do. Guess I should be a bigger risk taker!!
I would love to get a new puppy to start training and loving. My two are aging. Cotton will be 7 next month and Barney will turn 6 in February. Unbelievable!! If I didn’t have cancer, I probably would have a puppy. But, at least at this point, I can’t in all good conscious take on a pup. It is highly unlikely that I will outlive the two I have now, much less a new baby. So, having cancer means making choices you don’t want to make. At all.
When you have cancer, every ache and pain makes you wonder if the cancer has begun spreading. I had a headache the other day. Awful, sharp pains shooting through my head. I rarely have headaches. Oh no! Has my cancer spread to my head? That’s a common place for lung cancer to spread. (It’s also treatable when and if it does.) (Apparently, I just had a simple headache. A Tylenol sent it away and it hasn’t returned.)
I have a new cough. Yikes! Have the tumors started growing again? An elbow pain … did the cancer spread to my bones?
I am not a hypochondriac nor a real worrier, but every little ache and pain brings a momentary fear to mind … did the tumors decide to spread or grow? Fortunately for me, my personality is such that though the thoughts come to mind, they are fleeting.
What’s it like, having cancer?
In many ways, I feel just the same as I always have. Sometimes, I will be in the midst of living and the thought comes rushing in, “wow! Look at you … you are doing [this or that] … with lung cancer!” It rushes back out as fast as it blew in. Thank goodness.
And, this will make some people think I am crazy, which I readily admit that I am, but I feel blessed and grateful. My life has gone places it would have never gone were it not for cancer. Certainly, I would have never spoken on Capitol Hill or gone to a meeting at the White House.
And, wow! I have met so many awesome people that I would have never met if I did not have cancer. My life is much richer for having met these people.
I have had the opportunity to learn that I have a handful of true friends. How lucky I am to know that. I have learned, too, what it really means to be a good friend. I hope my friends know that I am there for them, no matter what, the same as I believe they are for me.
It can be scary, but it can be liberating. A lot of little fears I may have had before have disappeared. I was always pretty vocal, but cancer made me more so.
And, cancer has made me happy. When I wake up every morning, I put my feet on the floor, get up, and begin a day full of joy. Cancer makes you appreciate the sunrise and sunset, the birds and flowers, the music of nature, the pure joy of another day.
Sure, there are the fears that are inevitable from time to time. Thankfully, they are short-lived. Who wants to waste time worrying, which changes absolutely nothing, when we can be living?
Cancer robbed us of my income, so financially, being sick has been an adjustment. We have to pick and choose quite a bit more than we did before, but the extra time I have available to enjoy life is worth the financial sacrifice. At least, it is most of the time.
I started this blog in hopes of telling my story for others who get this diagnosis. I think from the beginning, even when I thought my time was going to be far more limited than it has been, I wanted to offer hope. Cancer doesn’t have to be the end of the road. Or, at least, we can strive to keep on living until we can no longer go on. There’s still life ahead!
When I was diagnosed with lung cancer, I had to quit doing my most favorite thing in the world – playing agility with my dogs. I simply didn’t have the strength or the stamina for it. It broke my heart because when I quit doing agility, I also quit hearing much from the people I thought were my friends. Unfortunately, there are lots of things about cancer than cause pain besides tumors. Losing your friends, or those you considered friends but who turned out to be acquaintances, is one of the hardest. I’ve been fighting this battle for over 2-1/2 years and it still hurts.
But, that’s not what this post is about. I quit doing agility, but I was determined to have something to do to occupy my thoughts. I refuse to dwell on the fact that I have lung cancer. I spent quite a lot of time in my backyard. It is a peaceful, happy place. I love it back there. I bought lots of pretty flowers and hung bird feeders.
The flowers brought color to my world and the birds that visited my feeders brought joy. I didn’t have any energy, but it didn’t take any to sit in the backyard and enjoy what God has created. In fact, spending time relaxing in all of the beauty rejuvenated me.
Pretty soon, I decided I wanted to capture the memories so I brought the camera out. With the help of an excellent photographer friend of mine from Midland, I practiced using the various settings on the camera. What I haven’t learned – then or now – is how to use any of the software that allows you to REALLY enhance your work. I know I need to learn, but I always put it off. Chemo brain dissuades me from doing many things that require a great deal of learning and concentration.
I seem to be getting distracted a lot tonight. Tonight’s post is titled “Pictures from the Backyard” and that’s what I want to talk about!
Throughout my journey, I have snapped a lot of shots in my backyard. I am a prolific picture taker and I am not usually inclined to get rid of any of them! I have thousands and thousands of pictures. Don’t start groaning! I don’t intend to post them all here!
But, I took some today that I want to share because I enjoyed taking them and I enjoyed seeing them when I loaded them onto the computer. I hope you might enjoy them as well.
|Abstract! I did this by spinning the lens while the shutter was open. I like it!|
|This is the flower that is in the center of the spin art above. It is a Dahlia.|
|This bud will ultimately open into a bloom like the one above. Beautiful!|
|Canna and Asiatic lilies — bring joy to my life!|
|Close-up of the canna.|
|Asiatic lilies. They are gorgeous, but they really don’t last very long. I enjoy them while they are blooming!|
|I take lots of pictures of the little lemons. They fascinate me!|
|A butterfly weed|
|Another butterfly weed|
|A close-up of the bud above. I love all of the teeny flowers!|
|A beautiful dianthus bloom. Right after a rainstorm.|
|More dianthus. I love these little flowers that just keep on keeping on.|
|This picture and the one above are lemon tree blooms. You have missed a true blessing if you have never gotten to smell lemon tree blooms. They smell so good! And, they’re beautiful, I think.|
|Close-up of a marigold. My marigolds have not enjoyed the torrential rains we have had lately.|
I love playing with the camera. The following shots are me playing. Just practicing and playing!
|A raindrop about to fall)|
|Flies and bees love this flower.|
|Flies? Bees? Very lovely green color, whatever they are!|
|This flower is supposed to attract butterflies and bees. Instead, there are flies, flies, and more flies!|
|Same for these flowers. They are supposed to attract butterflies/hummers. Instead, I get flies and whatever the green bug is!|
|This butterfly just happened to fly up when I was outside taking pictures. Think he is pretty (in a dull sort of way) so I followed him from plant to plant taking his picture!|
You know, I try to stay really upbeat most of the time. I am fairly successful at it. Like Dann Wonser says, most trials and tribulations we lung cancer survivors face are very tiny, while cancer is VERY BIG. (http://www.dannwonser.com/blog/a-little-disaster-can-be-a-good-thing/5/4/2015 … you really HAVE to read this, it is hilarious!). I think many cancer patients agree that we no longer sweat the small stuff … and most everything we face in our lives besides cancer is small stuff.
But, I came across the following article today: http://www.ksat.com/content/pns/ksat/news/2015/05/08/questions-raised-over-funding-for-cancer-research.html. It distressed me a lot. As did most of the reaction I received after I posted on Facebook about it.
The article was written by Myra Arthur, an anchor/reporter for ABC affiliate KSAT-12, a San Antonio, TX affiliate. Ms Arthur questions, as do I, why funding for lung cancer research trails so far behind that of other cancers, especially breast and prostate. Her advocacy makes me wonder if somehow her life, too, hasn’t been touched by lung cancer. Most people ignore it otherwise. That’s just the sad fact.
Facts – Ho Hum … But Necessary!
Here are some facts about cancer – some good, some not so good:
1. The two largest federal agencies that fund cancer research are the National Cancer Institute and the Department of Defense. These two agencies funded breast cancer research at $802 million in 2014. Prostate cancer research received $334 million.
2. Breast cancer is expected to be found in 234,190 men and women in 2015. (That’s right! Men can get breast cancer, too!) During 2015, 40,730 people are expected to die from breast cancer. That’s too many, for sure, but basically, if you get breast cancer, you have very good odds of surviving at least five years. These odds have increased exponentially over the past few years as more and more attention has been given to the disease.
A whopping 29% of all cancers diagnosed will be breast cancer. About 15% of all cancer deaths result from breast cancer.
3. Prostate cancer is the most common cancer among men. It nearly seems like every man is going to be diagnosed with it if they live to be old enough. I have gotten so cavalier about it … “oh! prostate cancer. minor inconvenience. treat it. be done.” I wasn’t quite so sure of myself when one of our very best friends died from it only months after diagnosis. (I think he waited REALLY long before seeking treatment and it had metastasized throughout his body.)
So, the facts for prostate cancer are: 220,800 men are expected to be diagnosed with prostate cancer during 2015. Prostate cancer will account for 9% of all cancer-related deaths this year.
4. And then there’s lung cancer. Research funding from the two major federal agencies for this disease during 2014 was a whopping $265.6 million. Let’s remember. Breast cancer got $802 million and prostate got $334 million. Hello????
During 2015, it is estimated that 115,610 men and 105,590 women (total of 221,200) will be diagnosed with lung cancer. Most of these diagnoses will be late stage because lung cancer typically doesn’t make itself known until it has metastasized. It is somewhat treatable if found in early stages, but in late stages, the prognosis is downright bad.
Lung cancer is expected to claim the lives of 86,380 men (that’s 28% of all cancer deaths) and 71,660 women (26% of all cancer deaths) for a total of 158,040 people succumbing to lung cancer in 2015. An awful lot of families are losing their children, their moms and dads, and/or their grandparents to this insidious disease.
So, the likelihood that you’ll get breast cancer if you are a woman or prostate cancer if you are a man is somewhat greater than that you’ll get lung cancer. Pray that you get one of these cancers and not lung cancer. Because, if you get breast cancer, you have an 89% chance of surviving at least five years. Prostate cancer has even better odds. Over 99% of prostate cancer survivors will still be living life in five years.
But, if you are one of the unlucky ones who gets the lung cancer diagnosis, you have much worse odds. Let’s just take a quote right out of Cancer Facts and Figures 2015, a publication of the American Cancer Society:
The 1- and 5-year relative survival rates for lung cancer are 44% and 17%, respectively. Only 15% of lung cancers are diagnosed at a localized stage, for which the 5-year survival rate is 54%. More than half (57%) are diagnosed at a distant stage, for which the 1- and 5-year survival is 26% and 4%, respectively. The 5-year survival for small cell lung cancer (6%) is lower than that for non-small cell (21%).
So, does this make any sense to you? Because it sure does not make sense to me. It breaks my heart at the same time as it totally infuriates me.
Did you know that ONE in FIFTEEN will be diagnosed with lung cancer? Those are some pretty scary stats. Most of us have more than 15 people in our circle of family and friends. That means you are very likely to be directly affected by lung cancer. Either because a loved one is diagnosed or because you, yourself, get that news someday. When the word comes that you or your loved one has lung cancer, I wonder if you are going to wish more had been spent on lung cancer research? Because right now, the odds that you will live even one year after lung cancer is found in your body are very, very slim.
There is no stigma associated with getting breast cancer or prostate cancer or colon cancer or, I suppose, any other cancer. But, people, in general, seem to think that people who get lung cancer deserve it. After all, isn’t lung cancer the disease of smokers? People know they are testing fate when they pick up those cigarettes. So, let them just suffer the consequences of their actions, right?
Well … first of all … NO ONE and I do mean NO ONE deserves to get cancer of any kind. It is a fact of life, I guess, that most all of us will be impacted in some way by cancer if we live long enough, but none of us deserve to get it.
Cancer is not a fun disease to treat. People are sick, sick, sick. And often lose their hair. And all of their energy. And their memory.
And, it is certainly not a cheap disease to treat. One … ONE chemo treatment that I had cost over $34,000 and that was after a $22,000 grant was applied. I had those treatments every three weeks for six or seven months. And, that was just the cost of the drug. It didn’t include the doctor, blood tests, or facility usage. Cancer can wipe a family out financially in no time.
But, back to the stigma associated with lung cancer. Did you know that 60 to 65% of all lung cancer survivors (because you become a survivor from the moment you are diagnosed) either have never smoked or are former smokers? In my case, I had broken the addiction five years previously. My cancer is one that both smokers and non-smokers get so there is no clear evidence that my smoking caused my cancer. It is also the same kind of cancer as my dad died from back in the 1970s.
I attended a LUNGevity HOPE Summit in Washington, DC last week. I was amazed at the 150 survivors at that event. One girl was only 20. Her late-stage lung cancer was found (finally) when she was 19. Another beauty was 24. She lost part of a lung to lung cancer. Heart-breaking. Neither girl smoked. Both were gorgeous. Both were physically fit. Both girls had such a difficult time convincing their doctors that there was something more than asthma going on that they didn’t have their cancer discovered until it had metastasized.
Even doctors have an errorenous image in their heads as to what a lung cancer patient looks like. So, while they are lollygagging along treating symptoms and never even entertaining the idea that there might be something more serious going on, the cancer cells are spreading all over the body.
I met men and women who bicycle hundreds of miles a weekend. Coaches. Vegetarians. Physically fit, well-nourished, non-smokers. Lots of them. Lung cancer survivors, one and all. I don’t know that an average age of attendees was calculated, but I would guess it was around 45, maybe less.
All of this is to say that your mind’s image of a lung cancer patient is probably wrong. He or she is probably as physically fit as you are. And, s/he is probably not as old as you imagined. And definitely likely does not have tobacco stained fingers that are still shakily raising that nasty cigarette up to be smoked. He or she might be your sister or your brother, your mom or your dad, or your best friend. Or you.
The stigma that just won’t go away STINKS. Worse than cigarettes and we all know how bad they stink. And, the stigma is far more deadly than cigarettes.
It is causing doctors to misdiagnose or delay diagnosis until the odds of survival have decreased to almost nothing. It is causing the general public to think it is fine to underfund lung cancer research. It is causing a lot of people to die deaths they do not deserve.
The Good News
The news is BAD when we look at funding, awareness, and the number of people being diagnosed and dying from lung cancer. There really are not a l ot of optimistic things to say about those things.
But, in spite of the limited funding, our scientists and oncologists are making significant progress. This is an exciting time in the research field. They are on the brink of making some discoveries that could change some of those dire statistics.
At the HOPE Summit, we heard from some of the up and coming talents in the world of lung cancer research and they were inspiring. We have targeted therapy drugs coming. Immunotherapies. Perhaps even some chemotherapies that will be less toxic. I can’t imagine the inroads that would or could be made if only lung cancer was given a significant amount of funding like the other two major cancers get.
Tehre are a few groups out there working hard to raise awareness. As awareness is raised, perhaps more big corporations and well-known names will jump on the bandwagon. CVC has recently begun a campaign to raise money for lung cancer. It is the first corporation I know of to begin backing such a campaign. As awareness is raised, there will be more money for research. But, there will also be more lives saved because the image of the old smoker with lung cancer will be replaced by the young vital nonsmoker with lung cancer. People will begin to realize that they are not immune to it just because they never smoked. And then we will have real progress. It is a day I hope I live to see and I have developed a passion for doing what I can to help that day come sooner rather than later.
Won’t you help me?
I just came across another article that I want to share here. It was written by Jamie Gorenberg who wrote for “Desperate Housewives” after her mom, a person who quit smoking 40 years earlier, was diagnosed with lung cancer. I want to share it with anyone who happens to read my blog because she says, more eloquently than I, how it feels to have someone you love diagnosed with lung cancer.
I started writing this article yesterday while I was in the waiting room at the Seay building at UT Southwestern. I guess I lost Internet before it was saved so I lost it all 🙁 I’m really sad about it because I felt “inspired” while writing it and think it was good (and no one can ever dispute that since it is gone, gone, gone!).
I am going to attempt to reconstruct what I wrote, what I was feeling when I wrote it. Wish my memory was not horrible! That’s a BAD sad effect of having chemo (or maybe of getting old or maybe both) – no memory. At all. Thoughts rush into my mind and leave before I can grab hold of them!!
Going to a cancer center is eye-opening. They are all full. When I go to Texas Oncology at Presbyterian Hospital, the waiting room, the infusion room, and the hallway where you wait for labs are all full of people. When I go to the Seay building of UT Southwestern, there are even more people everywhere you look. So many lives struck by cancer.
Yesterday – Monday – we had a hard time finding a place to sit even though there are two different large waiting rooms to choose between. My picture doesn’t reflect how very crowded it was, but it is the only picture I tried to take of the waiting room … It’s a little blurry but I decided that’s okay because I am not trying to identify anybody who was sitting in there … just to record the crowd…
If you are not personally affected by having the disease yourself, you know someone – usually a friend or family member – who has battled some kind of cancer at some point in their lives. My dad died of cancer at age 49. My beloved stepfather, Bob Massie, was eaten up with cancer and passed away just five years after he and Mom married. My maternal aunt died from cancer and my paternal uncle did, too.
Over the last few years, Robert and I lost two great friends to cancer – Mike Schoolfield and Richard McCann died about a year apart. Another good friend, Steve Massengale, was given only weeks to live after cancer that had eaten him up was discovered. His is a success story!!! He has been a survivor for at least 10 years!! The more I think, the more friends and family I think of who have suffered from cancer. Some fall victim and some beat it … but they and their families have been touched by it.
And, for every person who receives that awful diagnosis themselves, there are family and friends who love them whose lives also change immediately and forever. It is an insidious disease for sure.
In the relatively small department where I work, Janice’s husband has had lymphoma. He is currently in remission, praise God!, but has developed multiple myeloma – the disease Robin Roberts from Good Morning America chronicled as she has battled it. The brother-in-law of my friend Cindy is battling leukemia. They had it under control for a few months, but it has returned now. The grandmother of another coworker has been fighting cancer for months, surprising the doctors who thought she would die within only weeks of diagnosis. My former boss was diagnosed with Stage 1 breast cancer only months after I received my diagnosis. Cancer is just everywhere. Everywhere.
I just read recently that David Phelps’ sister passed away last year. David is the unbelievable tenor who often sings with the Bill Gaither Vocal Band. His sister frequently sang backup for David when he was on the road doing concerts. You would never have realized it by looking at her or watching her, but she was fighting liver and back cancer that ultimately took her life. She was only 49. She had so much life left to live, but cancer cut it short. For some reason, that broke my heart. She always had a big smile and seemed so full of life. Gone…………..
It doesn’t matter how much money you have. How old you are. What your name is or what your parentage is. What color you are. Cancer does not discriminate.
These melancholy thoughts were in my mind when I saw the following in one of the waiting rooms yesterday:
This young mom and her daughter were both messing with the doll the mom is holding. Mom was braiding the doll’s hair, using great care to do a good job of it. I wish I had had my good camera and the nerve to ask if I could take a picture or a series of pictures of the two of them. Mom, with her mask and bald head from chemo. Daughter with her smiles and happy countenance. For some reason, the two of them represent The Face of Cancer to me. There is a lot of sadness in this picture but also hope. Neither Mom nor daughter appears to be giving in to the disease.
On the other hand, I am struck by one more thing when I observe the people in these cancer centers. Nearly everyone has a very pleasant attitude. I hear polite, happy people speaking. I rarely see anyone who doesn’t smile – even when they look like cancer has really ravaged them. Very few appear to have given in to the disease. I do believe that you will see more happy and contented people in the cancer centers than you will at nearly anywhere else. I sometimes pat myself on the back for having a good attitude about being sick, but truthfully, it is more common than not for cancer patients to have a positive outlook on life.
At the same time as I saw the mom and young daughter above, there was another man and his family or friends sitting there. Lots of hospital staff came up to the man to speak and kid around with him. He is obviously a favorite. Based on his appearance, I have to wonder how much longer he has on this earth. His head was not bald like the mom’s is but you could tell that chemo had done its work on his hair. He was skinny … REAL skinny. Sick skinny. But, his smile was bright and cheerful. He also represents the Face of Cancer to me. I wish I had gotten a picture of him.
I decided that I would try to get more pictures of people in the waiting rooms when I go. So many stories. So many heartbreaks. And, at the same time, so much joy! The faces of cancer. They are you. They are me. Everyone is impacted by this insidious disease in one way or another – everyone.