I just finished watching the movie, Gleason. It is the story of Steve Gleason, a former New Orleans Saints professional football player and current ALS survivor. Steve was diagnosed with ALS when he was only 34 years old. ALS, aka amyotrophic lateral sclerosis or Lou Gehrig’s disease, affects the function of nerves and muscles, ultimately rendering those with the disease unable to move or speak, though their minds remain strong.
Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. About 6,000 people are diagnosed with the devastating neurological disease each year. The life expectancy for those with ALS is three to five years, though 20% live at least five years and ten percent will live more than ten years. Live, as many cancer patients also know, is a relative term.
The movie chronicles the journey Steve, his wife Michel, and son Rivers have traveled, mostly since Steve’s diagnosis. It is, without a doubt, inspirational. And frustrating. And maddening. And, incredibly sad. If you watch it, and I encourage you to do so, be sure to have a box of tissue nearby. I can’t imagine that you won’t need them.
Everyone handles adversity in their own way. Steve and Michel resolved to meet the disease headlong, especially after Michel learned she was pregnant with their first child just a short while after learning Steve was entering the battle, quite literally, for his life.
Steve has the money and the fame to do a lot more than a lot of us can do. And, to his credit, he is using both to bring great awareness to the disease that has robbed him of his vitality, but not of his spirit. There is even a law, the Steve Gleason Act, that ensures that Medicare or Medicaid will pay for speech generating devices so that ALS sufferers can continue to communicate even after the disease robs them of their ability to speak.
I am not an expert, to say the least, on the ALS disease. I’ve feared it since I saw a movie many years ago about the battle baseball great Lou Gehrig fought against it. It, like cancer, is not for sissies. That’s for sure. It is a mean, mean, mean disease.
What Inspires Me?
As soon as I finished watching the movie I felt compelled to come fire up the computer and write. I have to write while the ideas are fresh in my mind or they leave me, often forever. Even when I am touched as deeply as I have been by the Gleason film and the life of Steve Gleason, my mind doesn’t always hang onto thoughts for very long. Chemo brain, anyone?
Steve Gleason inspires me. This man has allowed a film crew to follow him through some of the most embarrassing and harrowing times a person could endure. The purpose of the film is to leave a documentary behind for his son, but it also serves to bring great awareness about the disease and the needs of patients and for research. Steve knows that he likely will not live long enough for his son to really remember him in the flesh. The video journals will let Rivers know his daddy, hear his advice, and know his love, even if Steve is no longer physically here.
And, something else the film does is show just how indomitable the human spirit can be. Steve and his wife Michel, who is as heroic and inspirational as her husband, decided when he was diagnosed that he wasn’t going to die before the disease actually robs him of life. What this man has endured to keep living leaves me without words (and we all know I am rarely speechless). And, to the absolute extent possible, he is living.
Steve isn’t simply alive, he is living. He can’t walk. He can’t speak. But, the movie shows him pulling his young son on a sled across a field with his wheelchair. Making important memories. Enjoying life, despite circumstances.
Since I have been diagnosed with lung cancer, I have met many others with a similar diagnosis. The majority of us were diagnosed with late stage cancer. I think most of my friends who have lung cancer never smoked. And, nearly all of the ones I feel closest to have not been stymied by their diagnosis.
Like Steve Gleason, they decided that lung cancer is not going to rob them of life any earlier than absolutely necessary. Most of them aren’t famous nor wealthy, but all are doing what they can to bring awareness to their disease. And, they wake up each day with a passion for life, an appreciation for the fact that another day has been granted to them.
I am so fortunate that I have never felt angry about my diagnosis. I don’t know why. I am not a worrier. I don’t know if that is because of my deep faith and complete assurance that when I leave this earth, I will go somewhere better. I just know that, from the beginning, my husband and I decided that the disease will be something we deal with while we are living life.
None of us knows when we will take our final breath. I could walk outside today and be hit by a car or I could suffer a fatal heart attack. Just because I have lung cancer doesn’t mean that I will die from my disease in the next year or two or ten.
What my cancer has done for me is give me a new appreciation for life because it reminds me in a real way that life is terminal. None of us will leave here alive, right?
So, it is up to me, today and every day, to look at this day as a blessing, a gift. I can’t undo anything from the past. And, I don’t know that I will be here tomorrow. But, I know I am here right now. And, it is my job to appreciate that fact. Smile. Look around myself and enjoy the sunshine, the day, my family, friends, and pets.
What about you? Who or what inspires you?
A Little History
Since I began the clinical trial for Opdivo back in July 2013, my life was returned to me. While I was on chemo, there were quite a few days when I wondered if the fight against lung cancer was really worth it.
Chemo made me so violently ill that I can remember being curled up on the bed with my Sheltie Barney wondering how in the world I could endure an existence that put me in such misery, time after time. I began to think that if this is what life is going to be like, let me off of this train sooner rather than later.
With chemo, I would feel good for a day or so after treatment (thank you, steroids!), but then the nausea and vomiting and fatigue would set in. For two or three days, I could get out of bed or off of the couch only to go throw up. I couldn’t eat or drink. It took every ounce of willpower and strength to walk 10 feet into the kitchen.
I couldn’t live. I could only exist … and it wasn’t a pleasant existence.
Fortunately, those horrid days lasted for less than a week. By the second week after a chemo infusion, I was feeling much better. I could eat and drink again. I could make myself live a somewhat normal life. By week three, just in time to go back for another infusion and begin the process all over again, I felt pretty good.
For the first infusions, I was able to keep my spirits high. I could look at the bright side and focus on what I could do, rather than on what I couldn’t. But, the longer the process went on, the harder it was becoming not to get depressed during that third week. I was knowingly getting ready to submit again to a treatment that was going to totally knock the wind out of my sails. Is that insanity, I wondered? Everyone knows Stage IV lung cancer patients don’t live long, I thought, so why was I making myself so miserable for at least a third of the time I had left on this earth?
Chemo treatments went on for about six or seven months. Finally, my doctor said we would take a break from treatments. He hoped the tumors would remain stable, but they didn’t. The minute we stopped treatments, they started growing. All of the headway we had made with the chemo was lost.
That’s when my doctor asked me if I wanted to begin a new regimen of chemo or start a clinical trial. The chemo was expected to be less effective while making me sicker. Ugh. No thanks. Clinical trial, here I come!
I didn’t expect the clinical trial to do anything for me. I expected to be a test subject so that decisions could be made for future cancer fighters.
I could not have been more wrong! From the moment I started the trial, I started feeling better. And my tumors were stopped in their tracks. And, now, 2-1/2 years later, my tumors are still stable and I still feel great!
So, I thought some of those reading this blog might get a little bit of hope from reading about my week last week. I think you will agree that it does not sound like a week in the life of a typical stage IV lung cancer survivor. The good and surprising news is that many other Stage IV lung cancer thrivers DO have similar weeks! Guys, there is HOPE … and lots of it!!
Fun, Fun, and more Fun!
It has taken me awhile to get this blog written. The reason? I’ve been too busy to sit down and write it! Don’t you think that’s a good thing?
The week I sat down to write about started with a Run As One agility trial. In order to have a trial, the barn has to be readied. Linda Lelak and I both start trial weekend on Friday afternoons, helping with set-up. It requires the lugging of equipment from place to place. By the time these pictures were taken, we were nearly finished emptying the stall where everything was stored and carrying it out to the barn.
|Since the dogs came to the trial on separate days, we took the opportunity for a photo shoot on Friday after we got things set up!|
Saturday and Sunday – 4 days compressed into 2
Cotton got to play on Saturday; Barney on Sunday. They both had a lot of fun! Barney finally earned his last Open Touch N Go title, so he’ll start in Elite at the next trial. We’ve been chasing that title for about two years so I was really excited when we had a clean run!
Cotton wasn’t quite as successful! She DID succeed in having a great time, though. And, in all honesty, that’s what it is all about. Just to be fair, here’s one of her runs. You can see that she runs very happy!
But, this is not so much about agility as it is a chronicle of my week. So, let’s move on.
Saturday, November 14th, was a busy date. As I mentioned, I ran Cotton in agility during the day. For the evening, there were three possibilities for activities.
First, American Cancer Society wanted me to speak at a semi-formal fundraising event they were hosting. I frantically looked for a way to get a cocktail outfit without spending a lot of money. I run dogs in barns; I rarely attend events where fancy clothes are necessary. My friends really came through with offers for help. It was heartwarming.
About the time I figured out what I was going to wear, I got an email saying that the event had to be canceled due to lack of ticket sales. I was sad on the one hand … and breathed a sigh of relief on the other. I hated that the event was so poorly supported that it had to be canceled.
I had barely relaxed from having that event canceled when I got a note from my doctor’s office wanting to know if I could attend a Dallas Stars hockey game on Saturday night. I was excited to get the offer to participate with Chris Draft’s Team Draft Foundation, mainly because a good friend and fellow lung cancer survivor was going to be there.
Now, there is another outfit dilemma. I have no Stars jersey to wear. And, once again, I don’t want to spend $50 to $100 (or more) getting one!
Just about the time we decided we would just bite the bullet and get something, I got yet another email saying the event was canceled for Saturday night and would be rescheduled. Ahhh, Saturday night is going to be a night of relaxation after all.
Oh wait! Here comes an invitation to a good agility friend’s birthday party – chips and salsa and nachos … This event did not get canceled! It was a lot of fun to see everyone. I am the only one of that particular crowd who runs NADAC agility. The others run in AKC and/or USDAA, two venues I eschewed after my cancer diagnosis, so it is like a reunion when we get together for a meal.
I came home from the party and did a quick load of laundry (quick = about 2 hours) and crashed so that I could get up before daylight on Sunday.
While I ran four runs on Saturday with Cotton, I only ran three with Barney on Sunday. I knew that I had another obligation to meet on Sunday night and I was afraid there wasn’t time for more runs.
On Sunday night, I had to be in Dallas by 5 PM for a Free to Breathe meeting. This is a foundation that was started by Dr. Joan Schiller, currently the head of oncology at UTSW, and a lung cancer expert. Like LUNGevity, they host a 5K walk to raise money for research.
They also do other events. I had previously worked at one of their tables at a Dallas Stars game doing lung cancer awareness. I’ve tried to determine the major differences between LUNGevity and Free to Breathe. From my own perspective, they both do great work raising funds for research. LUNGevity is also focused very much on lung cancer survivors. They are all about offering HOPE to those of us fighting the disease. They do a wonderful job of it.
|Sherry and I have HOPE … and lots of it!|
Free to Breathe, I have decided, has a primary focus, besides raising funds for research, of increasing awareness about lung cancer. You will find them at health fairs and other events.
I’m happy to be involved with both organizations because I believe offering survivors and thrivers (a term I learned from Free to Breathe and that I absolutely love) hope and information is incredibly important. Lots of us are living still. Our prognosis is not as dark as it was. This is vitally important information for people with lung cancer. Don’t give up. Never give up.
But, I believe it is equally as important to get the word out to the masses that lung cancer attacks more people than any other cancer besides breast. It kills more than breast, prostate, and colon cancers combined. There are two reasons why I believe lung cancer is so deadly:
1. people believe it is a smokers’ only disease, which couldn’t be further from the truth and 2. it is usually without symptoms until it has advanced to stage 3 or 4.
I had a lot of fun meeting everyone at the Free to Breathe event. I hope I will have a lot of opportunities to work with them … as well as with LUNGevity.
I kept thinking that cramming four days into two over the weekend would not be a problem because I would just rest while I was at chemo. Chemo day (a misnomer, really, because I don’t get chemo, I get immunotherapy … but both require an infusion and it is just easier to call it chemo day!) is usually a long day. It begins with a blood draw. Then, I wait an hour or so while the blood is read. Then, I have a visit with my favorite oncologist in the world. He orders the immunotherapy. It takes an hour or so for the pharmacy to get the life-saving concoction put together. Then, the infusion begins. The drip only takes an hour. Still, even if everything is running like clockwork, which it doesn’t always, I am there for a minimum of 3.5 hours. Usually, it is more like four or five hours.
I love most everyone at UTSW so the time goes pretty fast. Nevertheless, it is a long day. I do not usually rest. Monday was no exception!
I actually had nothing to do on Tuesday. I usually have agility practice, but instead, we had rain. As much as I love my agility lessons, I was happy to have a day off. I did very little besides rest.
On Wednesday, I met a couple of friends for a movie and a late lunch. I never went to the movies until I met Anna. Now, I go at least once a month and often two or three times a month! It is a nice way to lose yourself in a world that doesn’t usually include cancer.
Thursday was an exciting day! I say frequently that having cancer has opened many doors for me that would have never opened otherwise. I can’t exactly be happy that I have cancer, but I can tell you that I am enjoying my life. A lot.
So, Thursday is usually an agility training day so it is always a day I enjoy. But, this Thursday, was something different. Robert and I went back to UTSW, this time to do an interview with WFAA, Channel 8 news.
It just so happened that the interview took place on the day of the Great American Smokeout. So, instead of being on the news once, I should end up being featured twice.
|Advertising UTSW’s new initiative|
|Waiting on the reporter to arrive|
|Dr Gerber explaining what my CT scans mean|
It is with mixed emotions that I was part of the feature above. I surely want people to know that they can and should quit smoking. But, I don’t want anyone to get the mistaken idea that only smokers get lung cancer. Because nothing is further from the truth and way too many people die because they think they are immune.
It only takes lungs to get lung cancer. That’s it.
We are anticipating that another segment will be aired on November 30, during the 4 PM news. I guess I will probably not see it live as I will be having chemo again. It would be highly unusual for me to make it home by 4, especially on a Monday after a long Thanksgiving holiday. Thank goodness for DVRs!
I had so much fun doing the interview. I love my doctor. I love the nurses and aides. It was especially fun that some of them got to be on TV, too! Sonia, the health reporter, was so nice. I felt like we were old friends! And, finally, I had an interview where my mouth didn’t get dry and I didn’t experience a moment of nervousness. Yes!!!!
RW and Kim had come in from New Mexico on Wednesday. They came over to watch the news story with us. Mom came too. Afterwards, Mom took us out to the Goldmine for dinner. It was a really fun day.
On Friday, Linda and I had agility class. We always have so much fun. Both Barney and Louie did an excellent job getting great distance and following our directions. I love to trial, but I love class even more.
After class, RW and Kim came over to help me clean house a bit before we went after Jimmy and Jonah. The kids are spending a little over a week with their dad … and were they excited!!!
|Grandma … not the camera AGAIN!!|
It is always great fun to have the kids, but it does turn our quiet existence a bit topsy-turvy! The boys have a lot of energy!! And, especially when they first arrive, a lot to say!
On Saturday, we had a great time. Linda, Mom, and I were signed up to work a Lung Cancer Awareness table for Free to Breathe at a Stars ice skating rink in Plano. Genentech was sponsoring a Free Skate for kids and adults as part of the awareness event. So, we all loaded up and headed to the Dr. Pepper StarCenter in Plano.
|Neither the kids nor the dad had ever been ice-skating before. They did really well. By the end of the Free Skate, Jonah was skating on his own. Jimmy took off on his own from the start.|
We all had a wonderful time. At the Awareness table, we got lots of interest and gave away many blue (LUNGevity) and white (Free to Breathe) bracelets. A few people took more information.
On Sunday, I totally forgot that I am no longer young and did something I haven’t done in years. I got up at 1:30 AM to get ready to go to a dog agility trial in Oklahoma with Ed and Linda and five dogs (three border collies, a Sheltie, and a Pom/Eskie). I picked Linda up at 2:15 and we headed to Ed’s. Because there wasn’t much traffic, we arrived in record time! The house was dark and quiet!
Linda and I, like teenagers, were outside with the dogs, trying to be quiet, but also having fun. She shined the flashlight into the porta-potty so I could see and then we used the flashlight to take the dogs through weave poles. This, my friends, is what they call “agility addicts.”
We were on the road to Norman, OK by 3:30. We laughed and talked, talked and laughed … and had a great time! This trial was done “beta” style, which means you run the same course twice. While we had a great time, Barney and I didn’t manage to have a qualifying score. I had a few chemo brain moments (I get to blame things on chemo brain … it could also have been called “senior moment”) during our runs that cost us. Barney, on the other hand, had some pretty runs!
This run was Regular 1. Barney had a beautiful run. If only his Mom hadn’t forgotten a jump, it would have been one of the nicest runs we’ve had. Where was my head??? On the second time through the exact same course, I managed to include the jump, but Barney thought I really wanted him to do the dogwalk instead of the tunnel at the discrimination. We argued about it for a bit…
What a fun, fun day. We arrived back to Ed’s by 5 or so.
Sum it Up
So … while this week may have been a bit more active and filled with more unusual activities than normal, I managed to do it all. And, keep in mind, chemo (immunotherapy) was part of the week. Had I still been getting chemotherapy, most of the activities described here would have had to be put on hold. But, with immunotherapy, and the way I personally react to it, I had a very, very full week.
Here’s what I want to leave you with. Getting a stage IV lung cancer diagnosis can be devastating. But, it isn’t the end of the world. There is HOPE. There is more and more hope every single day as researchers find more and better ways to treat our cancer.
Don’t give up. Never give up.
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!
I just got back from New Mexico where my husband and I went to visit our son. I drove 2,158 miles from Friday to Thursday. I’m a little tired now … having trouble recouping from a busy, busy week!
But, I can do this!! And I am proud that I can!
It is so funny. While we were in New Mexico, I had a burning desire to write a blog. I had several in mind that I couldn’t wait to get onto paper.
Here I am now. Sitting at the computer. Trying my hardest to remember even one of the ideas I had. All I can remember right now is that they were really good ideas!
I love to go to New Mexico. Where our son lives, it is very majestic. It is also very dirty. Dirt is everywhere. There is barely any grass or anything. Just dirt. Everywhere!
|Taken from the parking lot of our hotel in Las Cruces. Beautiful.|
|A park in or near Cruces.|
|At the Valley of Fire|
Darn it all! The pictures make it appear that there IS grass. Maybe you just have to trust me … there is NOT! I didn’t think about taking pictures of the desert. I spent more time taking closeups of flowers that I found. Hopefully, next time, I will remember to take some pictures that show how desolate and how much dirt there is. Everywhere.
|These were taken on a little dirt road off of I25 and beside Denny’s. My son asked me to never go here again. Apparently homeless gather nearby and there have been several murders. Oops.|
I imagine by now anyone who has read my blog knows that I love to take pictures of flowers. I found some beautiful ones out in the desert. It meant a lot to me to find them. I am a big believer in HOPE. The flowers that manage to grow in these dire conditions – heat (it was over 100 every day we were there), drought, sand – give me hope. Because despite dreadful odds, they thrive!
|Purple cactus. Isn’t it beautiful?? I’ve never seen anything like it! According to Wikipedia, the color results from stress due to drought or cold. Trust me! It wasn’t cold!!!
|Whatever this tree is, it is blooming. (See above for closeup of bloom)|
|Pecan trees are thriving here. There are orchards and orchards of them in New Mexico.|
I took pictures of both native plants and those that were growing at our hotel in Las Cruces. Here are some of the pictures of the plants at the Staybridge Suites where we stayed one night (GREAT room for a really good price). We arrived there from Dallas at about 1 AM. I discovered how pretty it was the next morning (or, actually, later that same morning!) when I woke up! Majestic; looking out and seeing the mountains in the distance!
|This is technically probably not a wild plant. It was planted in the parking lot of the Comfort Inn and Suites where we stayed in Truth or Consequences. I took LOTS of pictures of it because I love to capture bees.|
|Soon, there will be sunflowers here!!! I think sunflowers are happy flowers!|
|A cone flower!!! Just growing out in the desert!|
|Birds liked this plant with its berries.|
|You can’t tell by the photo, but this was huge! It was really pretty!|
|The bees or wasps sure liked this little flower.|
|A butterfly on this prickly cactus! You would think it would get stuck by the needles!|
|The trail is visible behind the rocks.|
According to the BLM:
Approximately 5,000 years ago, Little Black Peak erupted and flowed 44 miles into the Tularosa Basin, filling the basin with molten rock. The resulting lava flow is four to six miles wide, 160 feet thick and covers 125 square miles. The lava flow is considered to be one of the youngest lava flows in the continental United States. http://www.blm.gov/nm/st/en/prog/recreation/roswell/valley_of_fires.html
If you are interested in learning more, I think this link might be one of the better ones:
If you have a chance to go, visit New Mexico! It is a beautiful land. It is a very impoverished land, as well. However, I saw evidence of HOPE throughout my visit. Whether it was from children growing up in an RV park, living in a tiny travel trailer, but smiling and having a blast or a flower growing out of rock, there was joy, there was hope. Cancer feels real small when you’re standing before a gigantic mountain.
What does lung cancer look like? Do you suppose that it looks like someone who is about 70 years old, very emaciated, with a cigarette in her hand? Someone who looks like they are about to die?
Or do you envision a 20 year old girl with her whole life ahead of her? Except that she’s currently bald from her chemo treatments and searching desperately for the drugs that will keep her alive? Or, maybe you see a beautiful, cheerful 24 year old young woman who has already lost part of her lung? Girls who were physically active; girls who never smoked; girls who weren’t around smoke?
In the picture below, three of the people are not lung cancer survivors. Can you guess which three? I bet not. Because lung cancer doesn’t have “a look.”
|Photo credit: Randy Elles Photography LUNGevity Foundation — in Washington, District of Columbia.|
Who gets cancer? Is it the 20-something college student? Is it the 30-something veterinarian? The 40-something TV reporter? The 50-something long-distance bicycle rider? Is it your 60-something vegetarian neighbor? Is it your postal worker? Your doctor’s office receptionist? The professional baseball player? The IT superstar down the hall? Your doctor? If you answer “yes” to all of these, then you are absolutely correct.
The fact is, no one is immune. Whether or not they smoked. Whether or not they exercised. Whether or not they ate only vegetarian foods. If they have lungs, they are susceptible to getting lung cancer.
The scary thing about lung cancer is that there are not often many symptoms until it has advanced so far that there are not a lot of treatment options. If you suddenly develop a smoker’s cough, but you didn’t smoke, or if you have extreme shortness of breath, wheezing, or asthma-like symptoms, or if you begin to drop weight for no reason, you might have lung cancer. A CT scan can be done in a matter of minutes to detect if there are tumors in your lungs. The earlier lung cancer is detected, the more likely that you will survive.
|Photo credit: Randy Elles Photography LUNGevity Foundation — in Washington, District of Columbia.|
Here’s a link that I hope will stay active for a long time. It has pictures that were contributed to WhatNext.com by cancer survivors. Now, these people do not all have lung cancer, but they are all surviving some kind of cancer. I hope you’ll follow the link. I think you will be encouraged.
I don’t know about you, but what I notice most is how many of these individuals have large, happy smiles. Smiles that reach their eyes. These are cancer survivors (some who are “NED — No evidence of disease” and some who are newly diagnosed and in the throes of chemo). They have cancer. Cancer doesn’t have them.
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 never bothered with flowers or anything when I worked – there wasn’t time. I was way too involved in agility and other activities to want to mess with flowers. I liked what other people had, but they were just too much work for me.
But, when I retired, I had more time. A lot more time. I needed something to fill my days with joy so I started filling pots with flowers. And, I found that those flowers brought me great joy. I would get up early and go sit out in the backyard and enjoy the gorgeous flowers and the serenity of it all. I had bird feeders spread around too. I also enjoy watching the birds and butterflies! Not the mosquitoes. I can definitely do without the mosquitoes.
Rosemary, marigolds, and lemon balm are all supposed to dissuade mosquitoes from making a home near you. Doesn’t work. I have tons of rosemary (I love it), pots of marigolds, and a thriving lemon balm and I also have giant-sized, hungry mosquitoes.
But, mosquitoes are not the topic of this posting. My flower of hope is.
The red verbena is my flower of hope. And there is a good reason for that.
Last year, I bought a beautiful hanging basket that had trailing petunias and verbena in it. I loved it, but it was not cooperative with me. It did not thrive like most of my plants do. When I left to go to New Mexico with my son, it gave up the ghost entirely.
I took the pot down and put it aside. It was a pretty pot so I thought I might replant it. I didn’t empty out the dead plants, but the pot was totally ignored. I did not water it or pay attention to it. Until, one day I looked at it, and lo and behold, there was a green plant and there were blooms!
I eventually pulled all of the dead plants out of the pot and started taking care of the little verbena that had come back from the dead. It flourished through the rest of the summer, but stayed pretty small.
Winter came. I took what was now a scrawny little plant with two little stalks of leaves up to the patio and diligently covered it along with other plants I tried to save every time the weather was going to be really cold. It didn’t look good, but it didn’t look dead, either!
When spring arrived, my little verbena was definitely not going to win a contest for most beautiful plant. But, it was alive. Two little stalks of alive! Hope! This feisty plant that refuses to die!
It has survived tremendous odds. It initially came back from the dead, surviving not having water in the hot Texas sun. It isn’t a perennial. It really shouldn’t have made it through the winter. But it did!
I have a vested interest in keeping it alive now. It is my hope flower. It keeps on keeping on even when the odds are stacked against it. It reminds me of me. And I want to keep it alive and thriving … and I want to stay alive and thriving too!
You have to look for your blessings where you can … and I know you guys will think I am weird, but this lung cancer made it possible for me to retire. I can’t even tell you how wonderful it is not to have to go to work any longer. I have had to work one or two jobs since I turned 20. I am loving every second of not having to do that any longer!
Another HUGE blessing is that the treatment I am on (clinical trial for immunotherapy drug) is wonderful. Here I am … Stage IV non-small-cell lung cancer patient … nearly 1-1/2 years after diagnosis … still doing fantastic!!! The tumors are still there, but they are just sitting in the same spot as they were when we discovered them. They haven’t grown or multiplied or spread. Hallelujah and Praise God!
The immunotherapy is the best thing since sliced bread. It doesn’t make you sick or tired and before I started getting it I was sick and tired of being sick and tired!! The hardest part of getting it is spending a long half day at the hospital getting an infusion every two weeks. Lucky me and lucky cancer patients everywhere … the company is or will soon be seeking FDA approval. From what I know, none of the patients who are participating at the clinic where I go has had terribly adverse side effects and I think everyone is doing quite well in the fight against their cancer.
I am so glad that I found UT Southwestern. Some people told me that they felt like it was a huge and cold institution that didn’t care about patients except as numbers in science experiments. Well, that’s far from true. The girls behind the desk know you, the aides who take you from place to place know you, the nurses, physician’s assistants, researchers, and doctors all know you as a person. I always feel like I am seeing friends when I go. Which is a good thing since treatments occur every two weeks.
My life is so full. Every single day is packed with things that I love to do. In the past, my days were full, but they were full of work-type activities. I worked at my 8-5 job and then I came home and took care of SchoolGrants, the business that God blessed me with since 1999. I let it go a couple of years ago and that was quite a liberating feeling! It still is. It was my passion for a long, long time but I burned myself completely out.
Once you receive a cancer diagnosis, I don’t think the fact that you have cancer (or had cancer if you are fortunate enough to beat it) ever leaves your mind. I never go through a day that I do not remember quite well that I have cancer. It impacts my thought processes. On the other hand, some days I can’t believe the diagnosis is correct. How can I be so sick when I’m so healthy??!!!
Which brings to mind more praises! Week after week, month after month, my blood tests come back perfect. We do thorough blood analyses before every single treatment and every time, my tests are perfect. My doctor is amazed. He said that less than 1% of cancer patients are as fortunate. It isn’t just my blood tests that come back perfect, so do my blood pressure, oxygen, and temperature readings! How can I not call myself lucky? LUCKY!! or, more appropriately, BLESSED. Totally.
Here’s another way I am blessed. Insurance. Oh my gosh. Fighting cancer is expensive. Ridiculously so. What do people who don’t have insurance do? I really don’t know. I’m glad I don’t have to find out.
I have been on some cancer sites lately that are sort of like support groups or something. I have never felt the need for a support group but I like to go to these online groups and offer support to those just learning they have cancer. I want them to know that a horrible diagnosis that scares the living daylights out of you may truly not be the end of the world at all.
Those people who get the diagnosis and decide right away that they’ll just go with palliative care distress me. No one thought I had a lot of time left but I was determined to make the best of what time I did have. My life has slowly evolved to something that it wasn’t when I was diagnosed. For instance, I do not participate in all of the same events, like agility training and competing, that I was consumed with prior to learning I was battling lung cancer. But my life is full. Every single minute of it! I am as happy as can be. Each day ends with me thinking that I needed more hours to get everything done that I wanted to get done that day. Amazing.
Those who just give up are missing out on so much. None of us have tomorrow promised to us, so we should all appreciate each and every hour that we are given. I just wish that those who choose not to fight their cancer would reconsider. At least I wish they would try to get into a test study so that the doctors can research the effects of more treatments. It might or might not help them but it surely might help someone else down the road. I’ve never been a hand-wringer. I don’t guess I understand those who are.
Well, I planned to post a lot of pictures here and discuss some of my recent activities, but I’m really beat. Today was treatment day and it was a long day. I’ll come back before too long and post some lovely pictures I’ve had the opportunity to capture over the last few weeks and months.
Until then, take care and thank God for another day!
I’ll leave you with two of my most favorite blessings:
|My lovely Cotton. She’s doing some birdwatching here. I’ll be posting pictures from our bird watching in the near future.|
|Barney. My heart and soul.|