I just saw that a new series is being developed called “Experts by Experience.” I just love that title. It is especially meaningful to me today because of a recent experience at… READ MORE
Merry Christmas, Y’all!!
I want to share The Twelve Days of Christmas with you. My friend Rose, her husband Vic, and I went to see the amazing display at the Dallas Arboretum on Wednesday night. If you have followed my blog much, you know that the Arboretum is one of my favorite places to go. I love to go and spend time in the gorgeous, no matter the season.
But, it is especially special at Christmas, when you can enjoy the extravagant display of The Twelve Days of Christmas. When I can go with friends, so much the better!!
Despite the popularity of the song, The Twelve Days of Christmas, I must confess that I can never remember the lyrics. In case you are like me, I will post them here, along with some photos I took. Truthfully, it is a song I never liked much, but I love the display at the Arboretum. I hope you will too!
The Christmas extravaganza at the Dallas Arboretum made its debut in 2014. I keep wondering how much longer it will be displayed. Because I never know if this will be the last year it will be seen, I try to see it with new eyes every time I go. I have shown you pictures in blogs from visits I made to the display in past years.
The $1.6 million display took two years to complete. You will see why when you see some of the detail in the of the exhibition.
Santa Claus made his debut this year (or, at least, it is the first time I have seen him). That’s what is so fascinating about the Arboretum. No matter how often I go, I always find new things to enjoy.
In addition to the twelve 25-foot Victorian-style gazebos that house the Twelve Days of Christmas displays, there are 500,000 lights illuminating the park and a 30-foot tall tree is found in the center of the property.
You guys!!! This girl just passed her FIVE YEAR cancerversary!!!
When I was diagnosed back in 2012, my first oncologist thought I might live four months. And, yet I recently celebrated FIVE years of life after diagnosis!!!
|Donna, December 20, 2017|
The year 2017 was an eventful one for me. After four years of immunotherapy treatments with every CT scan showing tumor stability, a tumor in my supraclavicle lymph node (on my neck, near my collarbone) outsmarted the drug and began to grow.
I had to quit my clinical trial after treatment #98. I was so looking forward to getting my centennial treatment. I wonder how many people in the world have received 100 infusions of nivolumab (aka, Opdivo)? I wanted to be among the first.
There were decisions to be made after we got that fateful CT scan back. Initially, I was going to just move into another clinical trial. But, by the time I completed all of the requirements (ie., a biopsy to see how much PDL-1 was present), someone else got the spot I was hoping to fill.
My oncologist suggested that I go on chemotherapy for a time while we waited on something better to come along. I had done chemotherapy. I wasn’t anxious to do it again. To say the least.
I pondered on the idea for several days. I cried … and I rarely cry. I started getting depressed … and I am rarely depressed. I thought, I prayed, I researched other options, including potential clinical trials available in Dallas or Houston or anywhere within driving range.
And, one day I decided radiation might be a viable option. The tumors in my lungs were still stable. Only the one tumor in my neck was growing. It seemed to me that it would be an easy thing to radiate that bugger. (I wasn’t a candidate for radiation when I was first diagnosed because of the location of my tumors in my lungs.)
I spoke to my nurse practitioner about the idea. She said if I really thought that was the route I wanted to go, she would make a referral to a radiation oncologist.
|My radiation mask and a wonderful
cross my cousin sent me.
My husband and I had an immediate connection with the radiation oncologist. We liked him a lot. And, we completely trusted that he would get the job done on that errant tumor, that I had nicknamed Wayward Tumor.
I had fifteen treatments. I will be blogging about those treatments if I will ever sit down and finish them. The treatments were easy enough. I was a little surprised by the severe fatigue that came around after the treatments were complete. It has taken several months to begin to regain my energy and even so, I tire and stay tired very easily.
Nevertheless, when I had my first CT scans since the discovery of the growing tumor, we got great news! Not only was the tumor in the supraclavicle lymph node gone … yes, for the first time in five years, that baby was no more!!!! … the one tumor in my lungs that the radiologist doesn’t call a scar shrank by half. That tumor had been completely stable for over 4 years, not shrinking or growing, just being.
I have been okay with those results … I’ve often said I was completely willing to carry the tumors around with me as I live my life as long as they just sit there nicely and don’t interfere. So, I wasn’t prepared to hear that it had shrunk significantly. Wow!!! You gotta love a CT scan like that one!!!
We didn’t do anything special to celebrate my five-year cancerversary. In a lot of ways, it was just another day. But, in my mind, crossing that magical line in the sand – it seems many stats are done for one year and five-year survival rates – was special. Very special.
I am well aware that people can and do get to fight the beast again after crossing the five-year mark. The fact is, I am still in active treatment. I have been in active treatment for the entire five years that I have known I had lung cancer. But, it is still celebration-worthy to cross a milestone that has been looming in front of me all of this time.
Next milestone in sight? 10 years, of course!!!!
Lung cancer is a bitch, y’all. It just is. But, it isn’t stronger than we are. If we keep a smile on our face, a song in our heart, and let hope consume us … we beat it. Every moment we do not dwell on cancer, we beat it. I am resolved to be happy and content every day that is before me. In that way, no matter what happens, I have beaten the beast.
|Merry Christmas, Y’all.|
Last week, I attended a regional HOPE Summit that was put on by the LUNGevity Foundation. My (nearly) 86-year-old mom attended with me. After spending a full day of learning and camaraderie with all of us lung cancer survivors and caregivers, Mom made a comment that resonated with me. She said, “It’s almost like you are all in a fraternity or a sorority.”
Yes. That is so true. We share a commonality that no one wanted and no one asked for and certainly no one sought. And, yet, that monster no one wanted, lung cancer, has brought us together in a way nothing else ever could. And, I think without exception, we are all thrilled to know one another.
Have you thought of that benefit? Do you go places where you meet others with a similar diagnosis?
In so many ways, it takes another person who has been diagnosed with cancer to understand what it is like. People can imagine or think they know, but only someone who has heard those awful words actually, truly know.
I think meeting other people who are surviving cancer helps bring hope to all of us. Maybe it gives just the push someone needs to climb out of depression and to give life another chance. For sure, it means that we can exchange war stories and know that the person hearing them knows just exactly what we are saying, even if our chemo brains make us forget the right words sometimes.
Once we hear those words, “You have cancer,” we all seem to react differently. I personally took on living with a vengeance. People laugh when they see my calendar. I keep it full. If there is an open day, I generally come up with something to fill it up. I want to enjoy every single minute of every single day. And, for the most part, I am hugely successful in that endeavor. If I am not laughing and smiling and having fun, I just might be asleep!
I have many friends who accepted the challenge of cancer and vowed to give it a run for its money!! They are strong warriors and usually spend a lot of time advocating on behalf of themselves and everyone else who has been diagnosed with cancer. They are using the time they have to make a difference in their lives, in the lives of other cancer patients, in the lives of everyone who comes into contact with them.
Thank God for these people! I think a lot of us want to give back when our lives have been extended beyond expectations. I wasn’t supposed to live more than 4 months. Wow! I have a story of hope to tell and tell it I will!
I know other people who learn they have cancer and it seems like a dark cloud descends on them. They lose their energy and their zest for life. It appears that all they think about is their cancer. Sometimes, these are people who are diagnosed with early stage and treatable cancer. Long after their cancer has been obliterated, they are still giving it power over them. They moan, groan and complain because cancer came into their lives. They feel sorry for themselves and shorten their lives by worrying constantly about the fact that they had cancer … and that it might come back someday.
I always wonder, why? Why give cancer so much power? I get it if you are so sick from chemo and/or radiation or surgery that you can’t continue living life. I’ve been there. I lost days of my life when I was getting chemo. I could do nothing besides curl up on the bed, completely miserable and wondering if I really wanted to continue. But, those days would pass in a bit and once more, life was worth living … and live it I did!
My own personal perspective is that people who give up the will to live life, who concentrate more on what their new normal means (and what they can no longer do) than on trying to make the best of the time they have, are losing to cancer long before it robs them of life.
Here’s the deal. When we dwell on something, it grows bigger and bigger and bigger. It takes on a life of its own. It can begin to consume you. If you’re dwelling on living life, then joy and passion are what consume you. But if you concentrate on what you lost, no matter how small or significant that might be, you give up your peace and trade it for worry, fear, sadness, and/or anger … or maybe all of those.
So, I choose to keep my focus on the blessings of cancer. Yes, the blessings of cancer. I joined a fraternity no one wants to be a part of … but now that I am a member, I am not so sure I would ever want to leave again. What??? Am I crazy????
Well … maybe. But, here are some of the things that have happened to me as a direct result of having stage IV (yep, terminal) lung cancer:
- As I noted already, I have made friends that I would have never met if it were not for the fact that I have lung cancer. I wouldn’t trade knowing them, not even if it meant I could somehow give away my cancer diagnosis.
- I am much stronger than I realized I was. It took cancer to teach me just how much strength I have. Some disease is not going to overpower my thoughts, even if it does try to overpower my body.
- I have so much more joy than before I was diagnosed with cancer. I guess when I came face to face with the reality that my life could be over in a matter of months, I began to appreciate what’s really important in life. People, moments, memories, time. God’s handiwork. Every single day, every single hour of every single day, I am thankful for the fact that I am alive and enjoying what God has given me.
- One thing cancer has done is rob me of patience. I have no patience with complainers or with people who can’t look past their circumstances to find happiness. I remove myself from their midst and that has helped make my life much happier!
- Not only have I made friends with others who share a cancer diagnosis, I learned who my true friends really are: the ones who didn’t just keep on living life without giving me a second thought, but the ones who I know would be there for me the moment I needed them to be. Sadly, for me and for most people who are diagnosed with cancer, I learned that many of the people I thought were good friends really are not. But, the flip side is that I learned who my real friends are. And, that’s a very important lesson.
- I learned how to enjoy life. I never was much of a worrier. I sure am not now. Worry is a time thief. I have no time to share with worry.
- Chemo brain has even lent a benefit. Thoughts don’t get a very tight handle in my brain. Sometimes, even most of the time, that can be frustrating. But only momentarily. I don’t hold onto hurts or wrongs … I don’t just forgive them, I FORGET them. Totally. So, they don’t interfere with my pursuit of happiness 🙂 I don’t try to forget them, they just don’t stick in my mind!
5th Annual LUNGevity National HOPE Summit
What is it?
I am home now from an AWESOME weekend that was spent in Washington, DC at the LUNGevity National HOPE Summit. It is held for lung cancer survivors and their caregivers every year. This year was the 5th anniversary. The event has grown from 17 survivors meeting in a small room to over 150 survivors, plus their caregivers, meeting in a large ballroom.
Lung cancer survivors who are attending for the first time are provided with the opportunity to apply for a generous grant that pays for airfare and hotel costs. Wow! What an opportunity!!
Lots of HOPE
Lung Cancer Awareness Campaign
- No one, absolutely NO ONE, deserves to have any kind of cancer, INCLUDING lung cancer.
- Smokers are NOT the only people who get lung cancer. Young, athletic people who never smoked are being diagnosed way too frequently. Sadly, doctors are MOST likely to let their cases go on and on before diagnosis … even doctors are influenced by the old campaigns that blamed smoking alone for lung cancer.
- There is HOPE!!! There is not as much as I wish there was, but there is hope. And if we could get more $$$$ directed toward lung cancer research, that hope would be multiplied many times over. It is incredible what our research community has done with such limited funding. It could grow exponentially if we could get more money to them.
My First Attempt
I haven’t updated my blog in a long time. How does that help provide hope? It doesn’t … so here i am, hopefully able to provide hope to any of you who have been diagnosed with lung cancer or who have loved ones who have been diagnosed.
I was first diagnosed in October 2012. I have passed the critical one year milestone and will see the 3 year mark, God willing, in just a few more months. Trust me, i thank my Lord every single day for my life. So very many don’t make it even a Year.
I love being alive and on this earth. Here to enjoy my family, friends, and dogs. But, God is good whether He decides to leave me here on earth or bring me home to Him. Talk about a win-win situation! i just can’t lose!
While i am here, i try hard to live every day to the fullest. Fortunately, i feel good, thanks to the immunotherapy i receive every two weeks. Barring bad news from the CT scans i had today, my tumors have remained stable since i began my immunotherapy clinical trial in 7/2013. Praise God!
So, what does living look like For this stage IV lung cancer survivor?
Dogs, dogs, dogs!
My dogs continue to dominate my life. They bring me such joy and give me so many reasons to want to live.
It is funny to post a snow picture since it is nearly 80 outside on this late March day. But, those two lovers of life get such joy out of the very limited snow we get here in Texas. Cotton also gets great joy in rolling in coyote poop. You can see how nicely she decorated herself in this picture!
The CDC just released its latest statistics for cancer survivors. A survivor is anyone who has been diagnosed with cancer and is still alive. They may or may not still be undergoing treatments. They may have lived 20 years since diagnosis or 20 minutes.
The news in the report is actually quite good for many cancer survivors. It seems research has finally gotten a handle on lots of cancers and, while it is a huge inconvenience to be told you have cancer (understatement?!), your chances of surviving for at least five years are remarkably good.
For instance, prostate cancer is the most frequently diagnosed cancer. Over 233,000 men were told they had prostate cancer in 2014. Fortunately, 99% of them will be alive in five years. Caution: 1% don’t make it. Don’t wait around! One of our best friends died of prostate cancer and it wasn’t pretty.
The next most common cancer is breast cancer. Pink anyone? (Is anyone else as tired of the pink campaign as i am??) In 2014, 232,670 men and women (but mostly women) learned they had breast cancer. Probably in large part because of all of the awareness campaigns and money thrown at research, 89% of breast cancer survivors will live five years or more.
The news goes south quickly from there. The third most common cancer is lung cancer. A whopping 224,210 people were told they have lung cancer in 2014. The majority won’t live a year. Only 17% will live to see that magical five year mark. And yet, funding for research into curing this cancer remains dismal.
There is that awful stigma that accompanies a lung cancer diagnosis. It is the smokers’ disease. And, i guess people who smoke or ever smoked deserve to die. And, i guess the thousands who never smoked but get lung cancer deserve it too. i presume this is true because there is so little support for finding cures. I am fighting to change that. So is LUNGevity (lungevity.org).
There are two cancers more deadly than lung cancer. Fortunately, they are not as prevalent. Only 6% of the 46,420 people diagnosed with pancreatic cancer will live 5 years. Liver cancer affected 33,190 in 2014. Only 16% of those people will be alive in 5 years.
These stats are dismal. It is up to us to fight for change. The more of us who lift up our voices, the better. Look at what awareness campaigns have done for breast cancer. It is time to spread the wealth. Other cancers are far more deadly and those diagnosed with them deserve to have hope and the chance to live for 5 or more years.
Please help! If you can’t contribute, you can still communicate the need to Congress and contributors.