I have to begin this blog on a sad note. There have been personal and national tragedies that occurred since I agreed to write a blog about hope and optimism. I lost three friends to cancer in a week’s time … and last night, my city lost five police officers who were gunned down in cold blood while doing their job of overseeing a peaceful protest march. Sometimes, events make it hard to see joy and optimism, but it’s still there. We just have to look a little harder.
Even though I will miss my friends badly, they each outlived their prognosis for stage IV lung cancer by years. The reason they beat the statistics and had years added to their lives after being diagnosed is because of the huge advances being made every single day in new treatment options.
originally published July 14, 2016
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
Imagine my surprise when I got a call on Friday from the American Lung Association asking if I would be available to interview with NBC Nightly News about my journey with lung cancer and immunotherapy. Oh my goodness!!! They apologized because it was short notice … and I was thinking, “Who cares??? Thank you, thank you, thank you for the opportunity!!!”
I spoke with the person who was going to be putting the story together on Friday. There was a caveat. The spot might or might not make it. And, we wouldn’t know until Sunday night or Monday morning. And, the interview needed to take place on Monday morning!
Lucky for me, the appointment for my first-ever monthly immunotherapy infusion was set for 3 PM on Monday, the latest it has ever been scheduled. That gave me enough time to do the interview and still make it to my appointment.
I’m not a housekeeper. I wish I was, but I’m just not. I get really tired when I think about pushing around the vacuum cleaner or finding spots for all of the stuff we seem to collect. (Keep in mind, that fatigue lifts immediately if someone offers the opportunity to do something I think is fun…) So, when the call came early Monday morning that the show would go on, I had to scurry, scurry to get at least one room of the house clean enough to be on NBC Nightly News!!
While I was getting ready for the interview, I received an email from another person at NBC News. She wanted to know if I could do a phone interview with her for a piece she was writing for their Web site. Wow! Well, yes!!! I will definitely find the time for that!! It is an advocate’s dream to reach as large an audience as possible with our stories!
I had barely hung up the phone when the person arrived to tape my interview for the news. My part was taped at my house, but I was interviewed by people in Washington, DC. That was interesting to do because I couldn’t see their faces so I wasn’t sure if I was answering the questions like they expected or if I had said enough or too much … I was honestly surprised at the clips they chose to use in the story because those were some where I thought I might not be responding as they would have expected.
It takes a long time to get a minute’s worth of video for something!! The guy who did the filming … I’m not sure what his title would be … arrived at 10 AM. He was still uploading footage to NBC at 1:30 PM. I had to tell him we had to leave because we hadn’t had anything to eat yet and I had to be at UTSW for an infusion by 3. It takes an hour to get there, so we were pushed for time!
I so wanted to be home in time to see the NBC Nightly News, but it was not to be. Things moved like molasses at the infusion center. It took longer for my bloodwork to be processed and then it took awhile for my Opdivo to get ready. I was still sitting in the infusion chair when the 5:30 Nightly News came on.
I’ve never done it before and might not have done it if I wasn’t the last person in the infusion center, but I asked if they would change the channel to the news so I could watch. I don’t think they believed me when I said I was going to be on it.
It started out showing me with my dogs. How appropriate!!! My dogs are a big, big part of my life. I thought it was awesome that they included them in the news piece!
One other thing before I have to run and get ready for a fun day photographing bluebonnets with a friend who in Texas from Florida – it has been so much fun hearing from people from all across the US who saw the news report and wrote to me. I have sure enjoyed getting in touch!!
So, without further adieu, here is the news article that Maggie Fox wrote. Embedded in it is a link to the news story.
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:
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.
To borrow the title of one of my favorite songs:
I can only imagine.
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,
When I went to a consult about joining a clinical trial at UTSW back in 2013, I never, ever dreamed I would still be here, writing this blog!! Remember, I was only supposed to live 4 months. I had already outlived that prognosis by several months in July 2013.
When I first started the clinical trial in August 2013, the drug I received had only numbers for a name. I had no idea what kind of drug I was receiving. Immunotherapy was not a word I had ever heard.
As time went on, I participated in a number of surveys conducted by pharmaceutical companies. The companies were seeking feedback from cancer patients about upcoming advertisements. I began to connect the dots … and realized that the test drug I was receiving was the newest and latest therapy – immunotherapy.
Not everyone has the same results as I do. In fact, my medical oncologist has said that the biggest side effect of immunotherapy is disappointment. Because it is touted these days as the “cure-all,” patients whose cancer doesn’t respond positively suffer great disappointment. Sometimes, they also live with side effects they hadn’t bargained for, such as pneumonitis or impaired liver or kidney functions. No drug is completely safe and immunotherapy is no exception.
But, for me … and for many like me … immunotherapy is a true miracle drug. The drug I get is Opdivo, aka nivolumab. Another was introduced at about the same time, Keytruda (pembrolizumab). Both of these drugs received FDA approval for use against non-small-cell lung cancer like I have at about the same time. Both had already been approved for treatment of metastatic melanoma prior to being approved for lung cancer. Other immunotherapies have now been approved by the FDA for treatment of various cancers, including lung cancer. There are other drugs currently in trial. This field of research is exploding!!
That’s good news for those of us with cancer. Five years ago, immunotherapy wasn’t considered a viable option for treating cancer. Today, it is offering great hope to researchers, physicians, and most importantly, patients and their families and loved ones.
But, this is not really an advertisement for immunotherapy. I do encourage you to speak to your oncologist about the possibility of being treated with this miracle drug, though. It might not be the right treatment for you, but it just may be!
Opdivo is infused every other week. That’s a lot of doctor-going, especially for a person like me who avoided doctors like the plague prior to being diagnosed with lung cancer. Every visit required extensive blood tests. At first, I had to have CT scans every 6 weeks. As the years went by and my tumors remained stable, we were able to extend the amount of time between scans to three months. I had so many CT scans that I learned to drink barium without gagging. That’s too many scans!!
At first, no one knew what in the world I was talking about when I said I was getting immunotherapy. These days, I imagine most lung cancer patients, and possibly patients with other cancers, are familiar with the term, if not with how it works.
Opdivo gave me back my life. I was very sick when I underwent traditional chemotherapy. With Opdivo, I suffer a bit of fatigue on the day of the infusion and some minor tiredness on the day after the infusion, but that’s about all. (My thyroid no longer works properly, a common side effect, so I have to take levothyroxine every day … That means I constantly fight a weight problem, but that’s comparatively minor (and I do have to remind myself of that quite often!).)
When I reached treatment #75 or so, I began to look forward to a big centennial celebration!!! How many other patients are out there who can say they have gotten 75, much less 100, immunotherapy infusions? I wondered about that then. I still do wonder. How many of us are there who have basically been with the drug since inception?
When I finally reached treatment #90, it was a forgone conclusion that I soon would be joining the centennial club. And, I looked forward to it with relish. I’m not really quite sure why it seemed so important to me to get to that 100th treatment, but it was a goal I really wanted to reach.
Imagine my shock and distress when I went to see my oncologist prior to receiving my 99th treatment and learned that I was being pulled out of the trial and I would not be getting any more Opdivo! After over four years, a tumor in a lymph node in my neck finally outsmarted the nivolumab. The drug was no longer controlling it. My doctor could not and would not continue the treatment.
What????!!! I cried. I rarely ever cry. But, I cried.
Most normal individuals would have cried because their cancer was once more on the move. Not goal-oriented me. Oh no! I cried because I was just two treatments away from reaching Infusion #100. My heart was set on it. It had been a foregone conclusion that I was going to be celebrating #100. I was nearly frantic in trying to figure out how I could still get those two additional treatments (I never looked past Treatment #100. Treatment #101 held no awe for me … just that #100 was important.)
I’ve already blogged previously about this bump in the road. In short, after much consideration, I decided to have the growing tumor irradicated. I am slowly blogging about the process, if you’re interested in reading about the experience.
So, if I was pulled from the trial, a tumor was growing, and I went through a different course of treatment, you may be wondering how I managed to reach Infusion #100. Well, it is really simple!
My medical and radiation oncologists both agreed that I should resume Opdivo treatments after completing radiation. The drug has controlled the tumors in my lungs for about 4-1/2 years. The logic of the oncologists is that it would be foolish to abandon a protocol that I have responded to so well. The tumor that outsmarted the drug, the tumor I called Wayward Tumor, has presumably been killed with radiation so we only have to worry about the tumors in my lungs at this time.
I resumed Opdivo treatments at the end of September after a break of several months. My blood test results remain perfect. I continue to feel great after a treatment. We’re back in the saddle again!!!
Imagine my surprise when I arrived at the doctor to resume my Opdivo treatments and my oncologist, his nurse, and my nurse practitioner came in bearing a 100th Infusion gift. If I haven’t said it before (I have), I will say it now: I have the most awesome medical team ever!!!
Shine is perfect! The lady who designs the sculptures says this about Shine:
“Shine could be a congratulatory piece for a milestone reached, or a healing piece to show support and belief in someone. I wanted the form to be visually uplifting… a little reminder of personal goals, met. I embellished the surface with gold to suggest inner light and energy.”
Enough said! There’s absolutely nothing more I can add except, “Isn’t she beautiful?”