We got the dreaded and totally unexpected news that my 48-year-old dad had stage IV lung cancer after he underwent a routine physical exam. He’d been having some pain in his knee, but we (and all of the doctors he saw) attributed it to some sort of strain that he got from driving from Texas to Washington, DC and back again in a relatively short period of time. Otherwise, he had no symptoms of any disease, much less lung cancer.
When I was diagnosed with lung cancer, I didn’t know anyone else who was still alive and fighting the disease. I started searching around and ultimately landed on a group where I feel totally at home – it is called WhatNext.
I am going to post two links below that will help you know if you think WhatNext will be a good fit for you. I go to a lot of different lung-cancer related forums, but I spend most of my time on WhatNext. It feels like home to me.
On WhatNext, there are caregivers and loved ones, survivors, and people from the medical field for all kinds of cancer from skin cancer to liver, lung, or lymphoma cancers. Take a look at the information below and please join, if it sounds like a place you’d like to be a part of!
This link tells you a lot of the benefits of the group in an advertising way: https://www.whatnext.com/ilp/lungcancer/?campaign=AMLC
SandiA is a Stage 4 Melanoma survivor who is active on the site. She tells you why she loves WhatNext so much!
Let me know if you joined the group because you saw this post! I look forward to seeing you! I think you’ll love it there as much as I do!
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?”
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.
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.
A Bump in the Road
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.
Sooooo … How did I Reach #100???
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?”
I started writing this article yesterday while I was in the waiting room at the Seay building at UT Southwestern. I guess I lost Internet before it was saved so I lost it all 🙁 I’m really sad about it because I felt “inspired” while writing it and think it was good (and no one can ever dispute that since it is gone, gone, gone!).
I am going to attempt to reconstruct what I wrote, what I was feeling when I wrote it. Wish my memory was not horrible! That’s a BAD sad effect of having chemo (or maybe of getting old or maybe both) – no memory. At all. Thoughts rush into my mind and leave before I can grab hold of them!!
Going to a cancer center is eye-opening. They are all full. When I go to Texas Oncology at Presbyterian Hospital, the waiting room, the infusion room, and the hallway where you wait for labs are all full of people. When I go to the Seay building of UT Southwestern, there are even more people everywhere you look. So many lives struck by cancer.
Yesterday – Monday – we had a hard time finding a place to sit even though there are two different large waiting rooms to choose between. My picture doesn’t reflect how very crowded it was, but it is the only picture I tried to take of the waiting room … It’s a little blurry but I decided that’s okay because I am not trying to identify anybody who was sitting in there … just to record the crowd…
If you are not personally affected by having the disease yourself, you know someone – usually a friend or family member – who has battled some kind of cancer at some point in their lives. My dad died of cancer at age 49. My beloved stepfather, Bob Massie, was eaten up with cancer and passed away just five years after he and Mom married. My maternal aunt died from cancer and my paternal uncle did, too.
Over the last few years, Robert and I lost two great friends to cancer – Mike Schoolfield and Richard McCann died about a year apart. Another good friend, Steve Massengale, was given only weeks to live after cancer that had eaten him up was discovered. His is a success story!!! He has been a survivor for at least 10 years!! The more I think, the more friends and family I think of who have suffered from cancer. Some fall victim and some beat it … but they and their families have been touched by it.
And, for every person who receives that awful diagnosis themselves, there are family and friends who love them whose lives also change immediately and forever. It is an insidious disease for sure.
In the relatively small department where I work, Janice’s husband has had lymphoma. He is currently in remission, praise God!, but has developed multiple myeloma – the disease Robin Roberts from Good Morning America chronicled as she has battled it. The brother-in-law of my friend Cindy is battling leukemia. They had it under control for a few months, but it has returned now. The grandmother of another coworker has been fighting cancer for months, surprising the doctors who thought she would die within only weeks of diagnosis. My former boss was diagnosed with Stage 1 breast cancer only months after I received my diagnosis. Cancer is just everywhere. Everywhere.
I just read recently that David Phelps’ sister passed away last year. David is the unbelievable tenor who often sings with the Bill Gaither Vocal Band. His sister frequently sang backup for David when he was on the road doing concerts. You would never have realized it by looking at her or watching her, but she was fighting liver and back cancer that ultimately took her life. She was only 49. She had so much life left to live, but cancer cut it short. For some reason, that broke my heart. She always had a big smile and seemed so full of life. Gone…………..
It doesn’t matter how much money you have. How old you are. What your name is or what your parentage is. What color you are. Cancer does not discriminate.
These melancholy thoughts were in my mind when I saw the following in one of the waiting rooms yesterday:
This young mom and her daughter were both messing with the doll the mom is holding. Mom was braiding the doll’s hair, using great care to do a good job of it. I wish I had had my good camera and the nerve to ask if I could take a picture or a series of pictures of the two of them. Mom, with her mask and bald head from chemo. Daughter with her smiles and happy countenance. For some reason, the two of them represent The Face of Cancer to me. There is a lot of sadness in this picture but also hope. Neither Mom nor daughter appears to be giving in to the disease.
On the other hand, I am struck by one more thing when I observe the people in these cancer centers. Nearly everyone has a very pleasant attitude. I hear polite, happy people speaking. I rarely see anyone who doesn’t smile – even when they look like cancer has really ravaged them. Very few appear to have given in to the disease. I do believe that you will see more happy and contented people in the cancer centers than you will at nearly anywhere else. I sometimes pat myself on the back for having a good attitude about being sick, but truthfully, it is more common than not for cancer patients to have a positive outlook on life.
At the same time as I saw the mom and young daughter above, there was another man and his family or friends sitting there. Lots of hospital staff came up to the man to speak and kid around with him. He is obviously a favorite. Based on his appearance, I have to wonder how much longer he has on this earth. His head was not bald like the mom’s is but you could tell that chemo had done its work on his hair. He was skinny … REAL skinny. Sick skinny. But, his smile was bright and cheerful. He also represents the Face of Cancer to me. I wish I had gotten a picture of him.
I decided that I would try to get more pictures of people in the waiting rooms when I go. So many stories. So many heartbreaks. And, at the same time, so much joy! The faces of cancer. They are you. They are me. Everyone is impacted by this insidious disease in one way or another – everyone.