How’s It Feel to Have Cancer?

A breast cancer oncologist wrote an article about how it feels to have cancer after she herself was diagnosed. She describes it like this:

Cancer turns life into a roller coaster of hope and despair. Like an intruder lurking in your closet, you never quite feel safe. It was difficult to be out of control, at the mercy of the kindness and skills of medical professionals.

Her article is a good one. You can read it here: http://time.com/4949983/breast-cancer-diagnosis/

How do you describe cancer?

If I Don’t Do It, Who Will?

Just this morning, I heard about a 29-year old man who has been diagnosed with lung cancer who wants to raise awareness about the disease by having his state offer specialized “beat lung cancer” license tags. Stephen Huff is among a growing number of young adults who are being diagnosed with late-stage lung cancer. They never smoked. They were active. They were healthy. They’re young. And, yet, they are fighting the most deadly cancer there is.

It used to be that when you thought of lung cancer, your mind’s eye saw a wrinkled old man with a half-burned, long-ash cigarette hanging out of his mouth or an elderly woman holding a burning cigarette in her tobacco-stained fingers. You hear hacking and coughing and have a generally negative attitude about the whole person/disease/addiction.

The picture of what lung cancer looks and sounds like needs to change and it needs to change NOW. In today’s world, your mind would be just as accurate if it saw a virile, 20-something with a racing bib on. Or, a 40-year-old mom cheering on her son’s soccer team. Or, your next door neighbor who never smoked and was never around cigarette smoke. Or you.

Smoking is still the number one cause of lung cancer, but every year, more and more nonsmokers are being diagnosed with lung cancer. Especially for nonsmokers, the disease is usually not diagnosed until it is stage III or IV since no one, not the patient, not the doctor, suspects lung cancer as the cause of symptoms until every other possible option has been exhausted at least once.

And, as an aside, even IF the person diagnosed with cancer is or was addicted to tobacco, do they really deserve to die? In today’s world of acceptance (gays, transgenders, races, nationalities, religions, the list goes on and on), we do not, DO NOT, accept smokers. Whether conscious or not, we as a society are perfectly willing for those evil smokers to fight and die from lung cancer because somehow they deserve what they got. Individuals, companies, and government agencies all withhold their money from lung cancer research because, however wrong, they believe it is a cause that does not deserve support.

Stepping back off of that soapbox, I’ll climb onto another …

Mr. Huff, the young man recently diagnosed with stage IV nonsmall cell lung cancer, is asking his state legislators to offer lung cancer awareness license plates. The plates will cost taxpayers an additional $55. Half of those funds would be sent to his chosen charity to help pay for more research. At this point, he doesn’t think raising money will help save his own life, but he is adamant that more funding for research will save lives in the future.

I agree that it is crucial to get more funding in the hands of researchers. When I look at the tremendous progress that has been made already, despite every possible financial obstacle being thrown in the way, my mind can’t comprehend what scientists could accomplish with adequate funding. According to LUNGevity, only six percent of federal dollars devoted to cancer research goes to lung cancer research. How does this add up? The most deadly cancer gets the least amount of funding? Boy! Some stigmas die hard, do they not?

Let’s put the disparity in funding into hard, cold facts:

During his interview, Mr. Huff was asked why he was trying to get the state to issue license tags supporting lung cancer research. His response is one I hope we all will consider,

“If I don’t do it, who will?”

 

 

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.

Continue reading Merry Christmas!!

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.

 

Advocate for Yourself!!

As anyone who knows me knows, I am a big proponent of clinical trials. But, recent events make this post one that I feel needs to be written.

Bud (in the white shirt) – just a month or so before he passed
away. Friends and family met for lunch.

On August 30, 2017, my friend Bud Bivens passed away from stage 4 non-small cell lung cancer. He leaves behind a bevy of great friends and loving family members. He will be sorely missed.

Bud’s cancer was not diagnosed until late June of 2017. Only a week or so before, he had celebrated his 68th birthday. Bud was active. He loved to bowl and to do other activities that kept him moving.

He felt good and seemed strong, but he had developed a persistent cough. He tried to get in to see his primary care physician  (PCP), but she was too busy to make time to see him. Her office suggested that he go to Urgent Care if his cough persisted. It did.

At Urgent Care, an x-ray was immediately ordered and Bud was told to get to ER right away. It was evident that he had late stage lung cancer and needed more help than could be provided by Urgent Care.

Bud was admitted to the hospital. A series of scans and tests were run. Because he was on blood thinnners, the biopsy was delayed for a week. Once the biopsy was done, Bud requested that they test the tissue for genetic mutations.

Treatment could depend on what was found through the mutation testing. If he had a high PDL-1 count, immunotherapy might be a good option. If he had EGFR, ALK, KRAS or other mutations, targeted therapy drugs could be more effective and less harsh than traditional chemotherapy.

Unfortunately, mutation testing takes a couple of weeks. However, while medical professionals waited on the results, Bud was sent to radiation to have several small tumors eradicated from his brain, using a gamma knife.

Clinical Trial … or Not …

I had had such phenomenal results from the clinical trial I had joined 4 years ago that we all were excited and hopeful that Bud could also get into a trial. I did and still do believe that patients get the latest and greatest that research has to offer when participating in a trial.

I also believe that the level of care and attention a patient gets when in a trial is magnified. I loved being in the trial I was in and would readily join another.

However, when waiting on a trial allows your fast-spreading cancer to continue sprialing out of control, a trial is not the best option. Your best option is to begin treatment NOW.

Bud’s treatment was delayed six weeks while all of the trial requirements were being met, such as being cleared by his cardiologist,  waiting on results from the mutation testing, and allowing his body to rid itself of blood thinners, etc.

Those of us who knew and loved Bud were devastated to watch him go from a virile man to one dependent on oxygen in just a matter of a few weeks. He could barely speak because his cough had gotten so bad. His movements were limited because his oxygen levels tanked with the slightest amount of exertion. It was clear to us that Bud was going downhill way too fast.

And, yet, the doctors drug their feet. Weeks passed with nothing being done. Weeks that saw Bud’s health decline more and more.

Finally, a trip to the emergency room resulted in Bud once again being admitted into the hospital. He had still been given nothing to combat his cancer. His doctor was still waiting around to try to get him into a clinical trial.

Some of us worried that this trip to the hospital was the last one Bud would take. His health was continuing to decline. Day by day, even those with him every day could see that he was failing. He was losing weight, couldn’t eat, and the cough was relentless.

A forthright doctor told Bud that if they couldn’t get his oxygen levels up to the high 80s, or preferably, into the 90s, they would have to intubate. Once intubated, the expectation was that it would fall to his family to decide whether and when to pull the plug on their dad’s life.

The idea of putting his family through that terrified Bud. He never showed much fear in the face of his disease, but making his family face such decisions was the one thing that I saw bring tears to his eyes.

Chemotherapy … Treatment at long last

While in ICU, the doctors decided Bud might have pneumonia hiding behind his tumors so they started heavy duty antibiotics. The antibiotics meant that Bud was no longer going to be eligible for the clinical trial so, at long last, chemotherapy was begun.

Bud rallied. Whether the chemo or antibiotics or both worked, we don’t know. But, Bud improved enough so that he was able to go back home. We were all elated. There was still hope.

Unfortunately,  he wasn’t home for long. His oxygen levels tanked. Even a level of 70 was a dream. Somehow, he managed to survive it dropping down into the 40s. When, despite valiant efforts, it couldn’t be brought up to a sustainable level,  Bud made his last trip to ER and, subsequently, to ICU.

He refused intubation. He was given morphine in increasing amounts. He passed away peacefully on August 30, 2017, surrounded by his loved ones. Bud will be greatly missed by many of us.

His brief battle against lung cancer makes me ready to push even harder to make people aware. First, if you have shortness of breath or a persistent cough, get it checked out. Sooner rather than later.

And, the point of this blog entry … we will never know if Bud’s life could have been extended or saved if doctors hadn’t drug their feet. It seems his oncologist was more interested in getting him into a clinical trial than into treating him. It seems he was viewed more as a potential subject than as a man whose cancer was quickly ravishing his body.

I hope through this blog entry readers can see that those who cared about Bud could see him declining day by day, even hour by hour. And yet, his doctor told him that she was shocked by how aggressive his cancer was. She had no idea that it was taking over his lungs so quickly.

Was she blinded to it because all she saw was a subject for her clinical trial? I hope not, but I am fearful that’s the case.

If you are a patient or a caregiver, please. Do not be patient. Do not rely on your doctor or medical team to know or do what is best. You and your family and friends may not be trained in medicine, but may see things in a more realistic way. If things don’t seem right or don’t seem to be moving fast enough or in the right direction, make waves. Make BIG waves. If one doesn’t listen, move to the next.

Again, none of us know if Bud’s life could have been extended if they would have started treatment within a week or two instead of after 6 weeks. But,  I will always believe more, much more, could have been done for him.

His experiences have reiterated to me that I care more about what happens to me than doctors do. I know how I feel and I  know if something doesn’t seem right. And, I won’t sit idly by while doctors wait for who knows what.

I hope you won’t either.

RIP, Bud. You are missed.