Cancer is nothing when you have hope!! This site is all about living … and living well … with late-stage cancer. I hope you will journey along with me through the ups and downs of living with lung cancer.
“Study nature. Love nature. Stay close to nature. It will never fail you.” –Frank Lloyd Wright
Since I have been surviving cancer, I have really, really enjoyed visiting the gardens at the Dallas Arboretum. Whether I go with friends or by myself, I am filled with gratitude and peace while I am there. I consider my enjoyment of the gardens as one of the blessings of having cancer, because unfortunately, before being diagnosed with cancer, I never took the time to go.
I am an animal lover. I always have been. When I was a little girl, my mother would let us have cats but not dogs. I remember frequently hugging a stuffed poodle and praying that God would turn it into a real dog.
As soon as I was on my own, I got a dog or two or three! I’ve had at least one my entire adult life. Usually, I have had two or more. They complete me. I suspect many of you know exactly what I mean. …More…
I am sitting here staring at a blank sheet of paper, wondering what I have to say to you that will be worth your time reading it. I am no scientist. With the advent of chemo brain, I don’t even really enjoy reading and researching like I once did. So I have no great wisdom to impart.
What I do have to pass along is hope. Such a little word but one that has the ability to change your life. Hope crowds out anxiety and pushes away fear. It fills you with peace and can motivate you. ….More
I was just looking at my Facebook memories. I love those! I find myself posting things I want to remember to Facebook now so that they will show up in my memories in the future. Am I the only person who does that? More…
A few years ago, I wrote a number of blog posts for Patient Power. I am going to provide links to them on my blog. Happiness is My Normal was originally posted 4/28/2016
I had the most disconcerting dreams last night or early this morning. I dreamed first that I was on some sort of gas-powered bicycle (it looked like a regular racing bike in my dream). I stopped at a gas station to buy a dollar or two of gas, which was all it took, and decided, right then and there, that I was going to begin to bicycle across America to bring attention to the sad facts about lung cancer:
#433aDay die from it – that’s 155,000+ per year
While it kills more people each year than breast+prostate+pancreas+colon cancers combined, it gets less attention, certainly less than breast and/or prostate
Women need to stop fearing breast cancer like they do and start looking beneath that fatty tissue to their lungs. Lung cancer kills nearly twice as many women each year as breast cancer. (Breast cancer screening is vitally important. I don’t mean to imply otherwise.)
The amount of federal funding relegated to finding a cure or at least new treatments to prolong the lives of those with lung cancer is far, far less than that received by other cancer based on funding per life lost.
Anyone … ANYONE … with lungs is susceptible to being diagnosed with lung cancer. It is not a smoker’s disease. It is a breather’s disease.
In my dream, while at the gas station, I started trying to figure out how my ride was going to work. Where would I sleep? How would I advertise the facts I wantedpeople to know? What would happen when my tires blew out? How would I carry spares and how would I fix the bike? When would I eat? Just how would this ride across America work? Where would I get my cancer treatments? I surely could not complete this jaunt in one month, between my treatments.
You have to realize how idiotic this dream is. I haven’t been on a real bicycle in 30 years or more. I am 64 years old, with stage 4 lung cancer. I have been working out a bit most every week since the first of the year, but certainly, nowhere near enough to ride a bicycle across America, not even some rigged up gas-powered bicycle.
So, in my dream, I decided I wouldn’t ride the bicycle after all. Nope. I have two good legs. I would walk. I had a big, floppy felt hat. I was good to go. But, again, the questions arose: where would I sleep? How far could I walk each day? What would happen when my shoes wore out? Am I strong enough to carry a backpack for a mile, much less thousands of miles? (The answer to that is no!)
Okay … walking and bicycling, even in my dream, really didn’t make any sense at all. But, I was still left pondering how I, as one person, can make a difference, can bring attention to this terrible disease that isn’t, but should be, an outrage and embarrassment in America?
Still, I thought, how neat it would be to take a foot-trip across this Nation, camera and notepad in tow. Every day, I would take pictures and write blogs about what I saw, how I felt. And, people passing me on the highways and byways of this great land would come to know my story … and far more importantly, the story of every lung cancer patient, past, present, and future. Finally, perhaps news channels would begin to follow my journey and suddenly maybe the public would start to be educated about this killer that’s unfairly tagged the smoker’s disease.
Maybe serious conversations would finally start to take place. Maybe.
Do you like to sing? Well, guess what? Science says it is good for you to sing.
Benefits of Singing
Prevention magazine lists six ways singing is good for you:
Singing eases your stress and improves your quality of life
It can help you bond
This one is BIG!!! Singing improves immunity in cancer patients!!!
Singing may be good for your heart (it is definitely good for your soul!)
Really? Singing helps curb snoring! (Your significant other may like this!!)
Singing may help people with asthma
Wow! Who knew?
Even though I love it, I am a terrible singer. I used to get such a kick out of my little family when we would be in church. All three of us were singing our hearts out. All on a different key. And none on the same key as the masses. I know our pewmates wished we would just mouth the words!
Usually, that’s just what I do if I am in a crowd. I mouth the words. Even when we are singing happy birthday to someone. I am just so embarrassed that I can’t carry a tune. But, get me alone!!! That’s when the stops come out! I love to belt out songs that mean something to me.
Let’s Share Favorites!
So, the purpose of this blog is not only to inform but to share. I have some favorite songs that I want you to have the opportunity to hear. I hope one or more of them will speak to you like they do to me.
One of the most meaningful songs to me is Mandisa’s “Overcomer.” That’s what we cancer survivors are, right? Overcomers? Take a listen! (And, if you aren’t a cancer patient, there is no doubt in my mind that you are not overcoming challenges of your own. This song works for all of us!)
Laura Story’s Blessings speaks volumes to me. We don’t have to look far to see blessings in our lives. And, sometimes, what seems to be the worst thing to ever happen to us isn’t.
‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
Lots of people might call me crazy (no offense taken if you do), but I see so many blessings in my life as a result of my cancer diagnosis. I know you are thinking, “You must be kidding.” But, I’m not kidding at all. It isn’t that I wouldn’t rather not have cancer. But, since I do, I have to say, it has brought me many friends and experiences I would have never had otherwise. And, I wouldn’t trade them for the world.
It is Well with my Soul
Yes! It IS well with my soul! No matter what happens to my earthly body, I know where my salvation lies! It is great comfort to know that when I take my last breath here, my next will be on Streets of Gold in Heaven.
Casting Crown’s Oh My Soul
The night Casting Crown’s singer Mark Hall was diagnosed with cancer, he sat down and wrote “Oh My Soul.” It is a powerful song. Mark describes the motivation behind the song,
I just sat down on the piano and was looking at the verse where David says, ‘Why so downcast, oh my soul. Put your hope in God.’ So the song is me just having a little argument with myself and giving it to Him.”
God has my cancer, too, Does He have yours?
End of the Beginning
Another favorite song of mine has nothing to do with encouragement or cancer or counting blessings, but I just love this David Phelps (he’s one of my favorite artists) song.
There are more songs that speak volumes to me and that I love to belt out, but I will stop here. We’ll do another blog at another time with more songs.
As you can see, the ones that mean the most to me also have a lot to do with my faith. I couldn’t go through this battle without my faith.
What about you? What songs are most meaningful to you? Why? Let me know!
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.
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!
Here is Barney’s Touch N Go run. He had a good day. He was oh-so-slightly too slow (he missed making time by less than half a second) in Tunnelers to earn a qualifying score, but he qualified in Touch N Go and in his Regular 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.
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.