Monthly Archives: December 2017

New Year’s Resolutions – What Are Yours?

Do you have New Year’s resolutions? What do you hope to accomplish in 2018?

Your list might be as short as … make it to 2019. That’s among my hopes for sure!!

I’m not a resolution maker. In fact, if you talk to most people who know me very well at all, I’m not even much of a planner, ever. I am a fly-by-the-seat-of-my-pants kind of girl. I wait until the last minute to get ready for a trip, to prepare for a dinner, to do most anything. I just don’t like to plan.

I drive my friends and family crazy because I alone am not a planner!! Everyone else wants to know when, where, how much! It is understandable. I don’t mind others planning for me. But don’t leave it to me. I won’t do it.

Usually. This year, or for 2018, I have several plans that have come to me just during the month of December. Why is this year different? I have no idea!! Maybe I am finally growing up! (I doubt it … and what’s more, I hope not!)

This year, my plans (not resolutions) are to:

  1. Read through my Bible. All of the way. I have never done it. I’ve started it but never finished. I hope this year will be different.
  2. Work on this blog regularly. I hope I can find interesting content and actually grow it to become a useful site, much like SchoolGrants was before it. (SchoolGrants was a site I ran for many years that focused on grant opportunities and more for K12 education.)
  3. I hope that I can learn about and use more social media tools. I’ve been listening to a book on tape about Instagram, Twitter, YouTube, and more. I’m am trying to learn how those tools can help me grow this blog.
  4. I am going to start going to FitSteps for Life. This is an exercise program solely for cancer patients. It is available at no cost to the survivors. Your doctor has to complete paperwork in order for you to participate. My doctor has completed his part. Now, I have to do my part. I hope that I will like it so much that I might start going to our community center for additional workouts.
  5. I want to continue my involvement with Cancer Support Community, but I would like to grow that involvement. I just started art class with my friend Rose (you saw her picture on my blog about visiting the Arboretum). She’s the best at (1) finding interesting things to do and (2) getting me to go along with her to accomplish them!!
  6. Visit the Arboretum and start taking pictures again like I did several years ago. I got in the dumps and quit doing things that interest me. I have a yearlong membership to the Arboretum now. I need to use it! If I do, you’ll get to see lots of pretty pictures!
  7. Get back on the agility field. My dogs hope I am successful in meeting this goal!

So, what are your plans? Your resolutions? It just occurs to me that mine don’t really have much to do with cancer, other than participating in some activities devoted to cancer survivors. Do yours?

Genetic Mutation Tests. Get Them Done!

Mutation testing is a subject near and dear to my heart. I can’t say how many people I have met who have lung cancer but know nothing about genetic testing. As a matter of fact, not so long ago, I didn’t know much about it either. (And, to tell you the truth, I’m still far from an expert. But, I know enough to tell you that the testing is very important and it can be a life or death test.)

So, What is Mutation Testing?

Mutation testing has a bunch of different names: molecular profiling, molecular tumor testing, biomarker testing, genomic testing, testing for gene mutations, genetic testing, genetic mutation testing, and more. It can be very confusing, for sure. But, here’s what you need to know – if you have lung cancer, especially nonsmall cell lung cancer (NSCLC), you are doing yourself a big favor if you ask your oncologist to get mutation testing, by whatever name, done.

Why is mutation testing important? Our cancer is unique to us. Each tumor cell is made up of specific proteins and molecules. According to American Cancer Society, normal cells do not have mutations, cancer cells do. Genetic testing allows doctors (pathologists) to take a detailed look at tissue from your tumor to see what mutations exist in its DNA and exactly what proteins are present.

 

How is Mutation Testing Done? Does It Hurt?

No. Or, it doesn’t hurt if you have tissue available from your previous biopsy. The pathologist will just use some of that tissue to do further tests.

If you do not have enough tissue left from your biopsy or the tissue is old, it will be necessary to get more tissue. Depending on where the tumors are located, the procedure could be simple or a bit more involved. I had a tumor on my supraclavicle lymph node (collarbone) so it was very simple to take tissue from it for further testing.

Why is It Important to Have My Tumor Tested?

Your tumor was already tested to a certain degree. The pathologist took the tissue from your biopsy and used it to determine what kind of cancer you have. If you have nonsmall cell lung cancer (NSCLC), then the pathologist looks at the tumor a little closer to determine what subtype it is. Generally, you will learn that you have adenocarcinoma (about 40% of NSCLC cases) or squamous cell (epidermoid) carcinoma (25-30% of NSCLC cases), but you may have one of the less common types, large cell (undifferentiated) carcinoma, adenosquamous carcinoma, sarcomatoid carcinoma, etc..

Your oncologist uses the information from the pathologist to determine a treatment plan that will be the most effective against your tumor type. Recently, it has become more affordable to provide the oncologist with even more information about your tumor type so that he can hone your treatment plan further.

Depending on the characteristics the pathologist finds in your tumor, your oncologist may decide that there are targeted therapies or immunotherapies that likely will be most effective against your tumor(s). In (very) simple terms, targeted therapies attack just your tumors, instead of all of your cells like chemotherapy does. Immunotherapy works with your own immune system so that it can see and destroy the cancer cells.

According to Memorial Sloan Kettering Cancer Center, about 60% of adenocarcinoma lung cancers will have specific mutations. Many of these mutations may have targeted therapies or immunotherapies available to treat them.

Among the most common mutations for which there are targeted therapies are Epidermal Growth Factor Receptor (EGFR), Anaplastic Lymphoma Kinase (ALK), ROS1, and T790. Scientists are discovering more and more mutations every day and finding treatments that work effectively against them. Immunotherapy works best when there is a large amount of a protein called PD-L1 in your tumor.

I’ll take this time to make a brief plug: more, more, MORE money is needed for lung cancer research. We’re talking lives here!!!!

Take a look at the Don’t Guess Test Web site. Among the vital information you will find there, you will find a PDF that you can download and take when you see your doctor.

 

 

 

Survivor Guilt

Survivor Guilt. This is such a common phenomenon among those of us who face a serious, life-threatening disease.

I have known so many friends and friends of friends who have passed away of cancer since I was diagnosed. It is a tragic side effect of putting yourself out there, of making friends with others within the cancer community, of sharing your disease and experiences with others.

It never fails that I don’t feel guilty when a friend passes away and I am still here, living and enjoying my life. It is difficult to face their families. In the back of my mind, and sometimes in the front of my mind, I am positive that the family or friends of the one who has gone before us are thinking, “Why are you still here when our loved one is not? Why couldn’t it have been you that succumbed instead of my brother, sister, mom, best friend?”

This is a strange phenomenon that happens to many of us who are fighting for our own lives. I have heard many other people who are battling cancer talk about feeling guilty for still being alive after watching a friend or family member succumb to a similar disease.

Why? I’m not sure what the answer is to that!

How many healthy people do you know that feel guilty because you have cancer? Or because a loved one passed away? They’re sad, of course. But, they aren’t often wondering why it wasn’t them that got diagnosed with the disease or that passed away instead.

Recently, I was at a dear friend’s funeral. He was diagnosed with lung cancer and, sadly, passed away only two months later. He had kids, including one son who has mental challenges who lived with him. It just seemed so darn unfair that this insidious disease had robbed him of his life and his family of their loved one.

I told one of his daughters that I felt guilty that I was here and he wasn’t. She was astounded that I would feel that way. And, she quickly tried to assuage my guilt. While in my mind, all of his family was wondering why it couldn’t have been me who passed on … I’d had my time …, nothing could have been further from the truth.

Healthy people don’t wonder why someone else didn’t die instead of their loved one. They mourn the death of their loved one, but they don’t wish death on someone else instead.

My friend’s daughter told me she wanted me to keep on living, to keep on advocating on behalf of lung cancer patients everywhere. And, most of all, she wanted me to lose the unfounded guilt I was feeling for still being alive.

That’s advice for every person who feels guilty for surviving when someone else did not. Honor the one who passed away by living your own life well. And, whatever you do, don’t add to your burden by feeling guilty for living when someone else didn’t.

 

 

What’s Your Word?

If you had to choose a single word to define 2017, what would it be?

This question was asked on a forum I frequent. I think your response tells a lot about you, your outlook on life, and where you are in your cancer journey.

 

When last I looked, the following responses had been posted: Horrid, Perseverance, Joy or Hope, Afraid (or a 4-letter word the censors wouldn’t allow).

I don’t know about you, but for the most part, that list made me really sad.

I have been very fortunate, I know. For the most part, I haven’t been too sick during the time I have been battling cancer.  I have been able to carry on my life, very much the same as I did before cancer.

Sure, I get tired easier. And, I carry around a lot more weight than before. And, I have to give up a lot of time going to treatments or scans or doctor visits. I had no doctors when my cancer was miraculously discovered. Now, I have a huge stable of them. And, this no-doctor-going girl is grateful for every one of them.

During 2017, some bad things happened. I had to get out of the clinical trial I had been in for four years. That saddened and scared me. The tumor in my supraclavicle lymph node started growing, in spite of the immunotherapy treatments I had been getting for over four years. There were personal occurrences besides cancer that could make you sad or scared or frightened or even angry.

But, the cancer in my supraclavicle lymph node is no more!!! Fifteen radiation treatments obliterated that baby! For the first time in over five years, that tumor is gone. That’s a great feeling.

And, that’s not all. A tumor in my lung that had been stable for four years, but wasn’t shrinking, shrank by nearly half. That was good and bad news when I read it on the radiologist’s report of my latest CT scan. It was great news that it is shrinking. But, I was a bit sad because I had convinced myself that tumor might just be a scar. Scars don’t shrink.

I had to get out of the Opdivo trial at my 98th treatment. I had looked forward to the centennial treatment for a long time, ever since it looked like I might actually have a centennial treatment. I never dreamed, at treatment 98, that the likelihood of that 100th treatment was going to be dashed. I was devastated when I learned I was being taken out of the trial at #98.

But, after my radiation treatments, I went back on Opdivo. And, while anti-climatic, I made that 100th treatment!!

And, oh yeah, I crossed that magical 5-year survival mark!! That’s a biggie. Most all of the statistics you see measure life by one-year and five-year survival rates. I helped move the bell curve!!!

According to the American Lung Association, the five-year survival rate for lung cancer is only 17.7%. For colon cancer, the 5-year survival rate is 64.4%, breast a whooping and encouraging 89.7%, and for prostate 98.9%.

If you consider only those individuals who have been diagnosed with metastatic lung cancer like I have, the five-year survival rate is only four percent. Four percent. Am I lucky, blessed, fortunate … or what???!!!

Sadly, more than half of all people who are diagnosed with lung cancer die within one year of being diagnosed. I lost some good friends to lung cancer in 2017. There are a bunch of reasons for that, but one of the biggest can be summed up in one word: STIGMA. People don’t give to and the government doesn’t fund lung cancer research like they do other cancers.

We will definitely be revisiting this topic in the future!!! It is one that is near and dear to my heart … and to my survival.

But, back to the topic at hand … what is your word for 2017??

And, perhaps more importantly, what is your word for 2018?

Merry Christmas!!

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.

My beautiful friend Rose. Isn’t her name appropriate? She is definitely as lovely as a rose.

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!

Merry Christmas 2017

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.

Ho-Ho-Ho

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.

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FIVE YEARS!!!! Yes!!!! FIVE YEARS!!!!

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
“lung cancer”
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.