Cancer is nothing when you have hope!! This site is all about living … and living well … with late-stage cancer. I hope you will journey along with me through the ups and downs of living with lung cancer.
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.
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.
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 have been so busy this December that I have had absolutely no time to sit and blog. That’s both a blessing and a shame. I love documenting my journey here. It is interesting to me to look back and see where I have been and what I have been doing.
One side effect that you always hear about when you hear about chemo is chemo brain. Well, I have it! My memory sometimes doesn’t last through a thought, much less an hour or a day! If something isn’t documented on my calendar or on Facebook or here … it might as well have not happened. Sad, but true. (Some tell me that this is not a symptom of chemo and is, rather, a side effect of getting old…)
I am waiting on my son and his girlfriend to arrive now. We are going to go to Texas Discovery Gardens and see the butterflies and maybe the gardens there. It is a fun place to visit. I haven’t been for quite some time so I am excited. I’ll no doubt be posting pictures of butterflies soon!
The Butterfly Garden at Texas Discovery Gardens is kept quite warm. Fortunately, it is not supposed to get very hot outside today … and, at least at the moment, it is overcast. The butterflies are usually not as active when it is cloudy so I hope it remains grey outside! (Sorry to any sun lovers out there!!)
The purpose of today’s post is to put up some pictures I took a week or two ago at the Dallas Arboretum. I met a friend there and we spent hours and hours – daylight and night-time – walking the gardens. It is gorgeous, especially right now. There is a huge display for the 12 Days of Christmas. You have to see the displays to believe them, but maybe later I will post some of the pictures I took.
Kim and I had so much fun taking pictures. I came home with over 1000!! Yes! One-thousand plus! I finally looked at about three-quarters of them yesterday. And now I am getting ready to go take lots more pictures. I may never catch up!
Today’s post, though, is for my yellow flower and bee pictures! I was thinking about them while I was getting ready a few minutes ago. I love yellow flowers. They brighten my spirit. In fact, I love the color yellow (except when the sun is beating down yellow sunlight and heat … I hate Texas heat). So, what I was wondering about while dressing was why I always say my favorite color is blue. It doesn’t lift my spirits like yellow does. Oh, the things one thinks about while putting on mascara!
God’s creations give me hope. Especially God’s creations that are yellow! 🙂 Just joking, mostly.
The bees and flower pictures send me in search of quotes. Keep in mind that these pictures were taken in mid-December. The flowers do not look like winter flowers, do they? And, I don’t really expect to see bees in the wintertime. But, these bees were prolific and very, very active. Just the fact that the flowers and bees are a bit of an anomaly in December imparts hope to me. Does it affect you that way?
Finding Rick Warren’s quote (above) about hope was perfect. Because, absolutely, God’s grace is the reason for my hope. Every single day. Every single moment. Even when we don’t know what is in His Master Plan, He knows. He is in control. No matter what. He has us in His Hands. That knowledge gives me great peace. I have no reason to worry. God’s got this! No matter what “this” is.
Now, I have no clue who Robert Green Ingersoll is, but I liked the quote … I felt like it was appropriate for this picture. Don’t you know people who go through life without hope? They see the negative in everything. They drag through life. And, you have to wonder how they can make it through each day. Or, I do.Complainers and those who are just never happy make me nervous and stressed.
I can’t imagine always looking at the dark side of life. I prefer to look to the positive. And, those are the people to whom I gravitate. I have friends who are facing tremendous challenges. Their lives are hanging in the balance as lung cancer battles to take them. And, yet, they brag on how wonderful their lives are, how special their friends are, how lucky they are.
I love them. I pray for them to win. But, in reality. They’ve already won. Their cancer is getting very little of their time and attention. They aren’t allowing it to steal a single moment of their happiness or contentment while they have breath.
One of the friends I am thinking of now has published a book about her journey with cancer. She is such a wonderful person, a true advocate for lung cancer awareness. She looks on the bright side of life. Someone wrote a heartbreaking comment to her on Amazon. They told her they couldn’t believe anyone could be so upbeat while facing a deadly disease. And, they criticized her for expressing joy, accusing her of making other cancer patients feel bad if they don’t share her upbeat attitude.
Really?? The note’s author would rather read depressing tomes about lung cancer and its effects. I feel pity for him or her. And, I feel even sorrier for the person he knows that is battling cancer. A downtrodden attitude, in my opinion, allows cancer to win. And robs the person of life while they are still alive.
Well … I choose Happiness and HOPE. Now and, hopefully, until I breathe my last breath.
Below, I am just going to post more happy yellow flowers and bees. There probably won’t be much more commentary so, unless you want to see the pictures, you can probably stop here!
The trees have lost their leaves, but these flowers spring forward, offering color and nectar.
Notice the huge leaves at the bottom of the tall stalks! I wish I had gotten the name of these flowers. I would like to have some somewhere at my house.
I think the leaves look like lily pads!
Gorgeous maple trees provide the background to these lovely yellow flowers.
These flowers are a different kind … but yellow, nonetheless!
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!!
It was fascinating being in the ballroom with so many lung cancer survivors. We spanned many years. One gorgeous young lady is only 24 … and she’s already recovered from having part of a lung removed due to lung cancer. There were way too many young people there in their 20s, 30s, 40s … and then there were some of us who were older, too. Young, old, skinny, fat … black, white, yellow, brown … cancer does not care. It attacks us all.
No matter the age, race, nationality, or religion, the group as a whole was the most cheerful, hopeful group ever. Considering we are fighting the most deadly form of cancer there is, that’s remarkable in and of itself!
LUNGevity has trademarked May as Lung Cancer HOPE Month. We are hoping to raise awareness through a “What Takes Your Breath Away?” video campaign. I don’t think it will catch on among most of my friends … I’m sorry, they just are not all that supportive of this particular fight. I don’t really know why that is the case. Regardless, I am hopeful that it will gain popularity among others so that more people will be aware that lung cancer happens to people with lungs, not just smokers. (See below)
According to the American Cancer Society publication (link above), 44% of lung cancer patients will survive one year. Only 17% are expected to survive for five years. For late-stage cancers like mine, only 26% survive a year and 4% make five years.
I am so fortunate. My traditional chemo regimen quit working about 7 months into my diagnosis. Were it not for the clinical trial I got into, I would have probably been one of the 74% who don’t survive a year. But, because of research and new technologies, specifically, immunotherapy, in my case, I am hopeful I will be in the 4% that are still alive and well five years after diagnosis.
But, I disgress … back to the Summit!
The packed room was filled with people who were quick to laugh, cheer, and tell their stories. Despite challenges, I don’t think there was anyone there who was not filled with lots of HOPE. Doctors and scientists were hopeful, too! Lung cancer research needs much, MUCH more funding, but even with limited research dollars, the scientists and doctors are making tremendous strides. It is so exciting to hear about targeted therapies that attack just the bad cells and immunotherapy that works by building up the cancer patient’s own immune system so that it can fend off the cancer. Anyone who has ever suffered through chemo knows how exciting it is that there are drugs available or coming soon that don’t send you to bed, wondering if treatment is worse than just dying from cancer.
I am sad that I didn’t take pictures at the National HOPE Summit. I was so involved in listening and chatting with others who have “been there done that,” that I never got my camera out of my purse. But, I’ve seen lots of pictures that other people took. And the smiles are infectious!!! People were having FUN all through the hotel!
Lung Cancer Awareness Campaign
So, LUNGevity is hoping the lung cancer awareness campaign will go viral. I mentioned it above, but wanted to both provide more information for those of you who might wish to participate and to post my first attempt. I decided today that I was going to try to do several. There are LOTS of things that take my breath away besides lung cancer. I’m going to try to highlight several of them. Some of my friends will probably be tempted to start blocking my Facebook posts because they are going to be tired of hearing about lung cancer. But, it is just that important to get the word out. Lung cancer is not a disease to ignore. It just isn’t.
I’d be surprised if anyone reading this blog hasn’t been impacted at some point by lung cancer … a grandparent, parent, sibling, or friend or friend’s family … lung cancer is so common that almost everyone knows someone who has or has had lung cancer.
Let’s get the word out that:
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 tried doing a selfie video this afternoon for about an hour. I never really got anything worth publishing. I may set up my good camera on its tripod and try again tomorrow or Wednesday. In the meantime, here’s what I’ve come up with for my “What Takes My Breath Away” video:
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 dogs and i meet our friends Linda and Louie (her precious Pom/Eskie mix) nearly every day to walk. We used to walk at least 3 miles every day. Lately, we have cut that down to around two miles because we come back to a field to practice obedience/agility skills.
Linda and I are fortunate enough to be taking agility lessons with Ed Scharringhausen at Run As One Agility. I have taken lots of classes over the last 6 years. Our classes with Ed make all others pale in comparison. We practice the skills he teaches us all week so that our dogs will be ready to move on when we return to class.
We also take classes with Pam White. Like Ed, she will analyze our runs from trials and is working hard with us to teach us distance and obedience skills. We are so fortunate to have two teachers who put so much into us and our dogs.
So, what’s this agility about which I speak so fondly?
This is Barney and me running a jumpers agility course. The handler directs their dog around a numbered course. Speed and accuracy are required.
Here is another run from the March 2015 Run As One trial:
Here, the dog must navigate a number of different obstacles. Barney and I LOVE to play agility. As you can see, it takes a great deal of energy.
I have not been able to participate in lessons or trials like i did before i was diagnosed. My stamina is not as good and my pocketbook is much slimmer than it was. However, with the current 2 classes a week and, hopefully, at least a trial a month, we are coming back!
Cotton doesn’t play agility as much. She’s an awesome agility dog, but she doesn’t always care to participate. Like all sports, it is somewhat expensive. Since my funds are now so limited, i mostly train and trial with Barney, my boy who loves to please and loves to play agility.
As you watch the videos, remember it is a stage IV lung cancer survivor running those courses. Awesome, huh?
Just for fun, i will post a video of Cotton from the December 2014 trial. First, you will see Barney run the course as designed and then you will see Cotton.
Hmmm, the formatting just went south…
Here we go! Formatting restored!
My favorite thing to do is spend time with my dogs and friends who also love dogs. But, especially as the weather warms, i also enjoy container gadening, watching the birds, and photography.
For the first time, i am trying herb gardening. I love my 3-tiered pot. Just bought two more from Amazon … one for mom and another for me. I am going to put some tomatoes and strawberries in the new pot. Not sure what else… i can’t wait to see how it goes! Fresh tomatoes and strawberries sounds heavenly though, huh?
I haven’t taken many pictures lately nor have i had time to really spend watching my birds. Soon, the hummers will be back … can’t wait!! Will have to find some time to enjoy these activities.
It is also nearly bluebonnet time here in Texas. I LOVE the bluebonnets. I combine 3 loves during the month or so they are out: my dogs, flowers, and photography! Here’s an example from last year:
Well, Robert is hungry. I need to end this and get him something to eat.
Here’s my final thought : if you have been diagnosed with lung cancer, even late stage lung cancer, do not give up! There is still life to be had. Grab it with gusto!
So … I am one of those people who do not go to the doctor. Ever. It just isn’t something I’m willing to do. For any reason.
But, one fateful day in October 2012, I decided it was time to go for a physical. Why? Because I kept getting bigger and bigger and I was just certain that I had thyroid issues. I am very active – I have two wonderful dogs (you’ll hear lots more about them!) that I do agility with. I was in class three nights a week and most weekends would find me at agility trials where I not only ran my dogs, but also worked in the rings throughout the day. Nevertheless, my stomach grew and grew and grew and I finally was fed up with it. So, I found a doctor that took my insurance and waited for a new patient appointment to become available.
I chose my doctor based on her name — Dr. Donna Casey — because she (1) had a good ranking with Blue Cross-Blue Shield, (2) took my ChampVA insurance, and (3) shared the same name as a friend with whom I worked. Best decision I have made in a long, long time was making an appointment with Dr. Casey.
When I arrived at her office at the end of October, she asked some questions and then did an exam. I nearly forgot to mention a knot I had found on my collarbone … but she had discovered it already anyway. Since I was a former smoker, she had already asked me if I wanted to have lung x-rays. Since I had quit 4-5 years previously, I thought it might be a good idea to see how much damage I had done over the years. After she discovered several knots around my collarbone, she suggested a CT scan might be in order. Her office made an appointment for me to have the scans that same day.
The scans were not clear like I expected them to be. When Dr. Casey called, she said they showed that I have emphysema, which for some reason really didn’t bother me much, and that there was some other activity that we needed to look at further. Believe it or not, I was far more concerned with what my thyroid test said – I was still far more concerned about the weight gain than errant cell activity. That changed some when the doctor started talking about having biopsies or a PET scan. I had no earthly idea what a PET scan was, but a little research revealed that a positron emission tomography is a test that is primarily used to diagnose (1) heart disease, (2) dementia, (3) epilepsy, or (4) cancer.
It didn’t take a rocket scientist to deduce that Dr. Casey was worried that I had some form of cancer. If you can hope for a kind of cancer, I hoped it would be some sort of lymphoma. What I absolutely didn’t want it to be was lung cancer – especially since my dad died from lung cancer at only 49 years of age back in the mid-70’s. But, we don’t always get what we want.
After the PET scan was done and interpreted, Dr. Casey called with the the bad news. I had lung cancer. She had already made me an appointment with an oncologist for the next day.
It was Dr. Lalan Wilfong at Texas Oncology who got to tell me and my husband Robert that I had stage 4 lung cancer. There was a spot in the left lung, a great deal of involvement of lymph nodes in the lungs, and tumors in the lymph nodes at my collarbone on the right side. It is inoperable. And, there is too much involvement for radiation. Our only option: chemotherapy.
Things moved quickly once the cancer was diagnosed. It is a fast-moving cancer so the quicker chemo could begin, the quicker we could try to halt its progress. The average lifespan for people with this lung cancer is only 1-1/2 years. I’m only 59 years old and I have a lot of living I still plan to do so I surely do hope to beat those terrible odds.
I pranced into chemo for the first time – ready to go! Let’s get “lit up” and start fighting back against this insidious, but oh-so-silent, disease. It took most of the day by the time we visited with the doctor, got insurance straight, and got the actual chemo. (It may mean something to some people to know which drugs I am getting: carboplatin, pemetrexed, and avastin. The chemo nurse told me they were the latest, the best, and very expensive. I have no idea!) We did a short video of me getting ready to start the chemo. I was going to do a documentary. Maybe I still can via this blog.
My 82-year-old mom and my husband Robert accompanied me to my treatment. Mom sat through the whole thing. Robert doesn’t sit well so he comes and goes throughout the experience. The infusion room was an interesting place – there were all ages of people sitting in the chairs getting chemo. Some people had hair; some didn’t. Some used ports and others, like me, got their treatments intravenously. Surprisingly, the vast majority of people receiving chemo were women. What’s up with that?
It was fairly unremarkable to receive chemo. I didn’t feel good or bad during the infusion. I felt just fine when it was over. There is really no need for me to have accompaniment – other than it makes those who sit with you feel better that you’re not alone. I’m such a loner that it honestly wouldn’t bother me to sit there and play on my tablet or phone or just rest, but that’s not how it is going to be.
Not really, but you would think so based on my appetite since I have started chemo. I don’t want soup or bland foods. Oh no!! I want Mexican food or chicken fried steak or roast beef and mashed potatoes. And, whatever it is that my mind gleans on that day, I nearly obsess over it! My poor husband has been such a trouper as we go from one thing to the next, satisfying my latest cravings. Yeah, I’m not losing much weight as I undergo chemo. That belly is still at least as large as it was before. That makes me sad.
Well, the day of chemo and the first day thereafter, I felt just fine. I popped up out of bed on the day after, walked my dogs like I always do and got ready and went to work. I was full of pep and energy until around noon. At that time, fatigue set in. I left the office a little early and came home. I had really hoped to go to agility practice that night, but I was way too tired for that.
I missed the next couple of days at work (Thursday and Friday). I was in bed the entire time. No eating. No drinking. Just sleeping. With my Sheltie, my Barney boy, cuddled right up beside me the entire time. I loved having him lay right up against my body. It was like I could nearly feel the heat of his body pulling cancer out of me. Of course, there’s me… Worrying that if his body is pulling the cancer out of me, I sure hope it is not pulling it INTO him! That would never do.
Try as I might, I just couldn’t get to agility practice that first week after chemo. I had the desire, but I sure did not have the get-up-and-go needed. But, when I got up on Saturday morning, I was determined to go to class. I did not feel good enough to go, but I got dressed and off we went. Robert went too, in case I couldn’t drive home.
It took everything I had to run those courses that day, but Barney and Cotton each got a couple of runs around the agility field. It was as exhilarating as it was exhausting. If you haven’t had chemo, there is no way to understand the fatigue that sets in. I could literally barely drag myself and Cotton and Barney to the car after I threw in the towel on practice.
Robert drove us home. We nearly made it home before I got sick, but he had to pull over and let me throw up. We got home and I had diarrhea. But, after that, I felt good again.
The next couple of weeks went fine. Unless I overdid it at work. Which I was sometimes prone to do. One Friday I so overworked my tired body that I was nearly dead in my tracks. Robert and I went to eat in Rockwall and I could barely make myself eat. Still, I drove home. And fell asleep while waiting on a turn arrow. Thank goodness Robert was in the car with me and could wake me up! I was really only dozing, but it wouldn’t have taken much for me to go into a full-fledged sleep right there in the turn lane! That’s tired!
Since it was December, a lot of our agility classes were canceled due to the holidays. We managed to make a couple of Saturday DAWG classes and one Thursday class at Dallas Dog Sports. The dogs and I had a blast at all of the classes – I do love agility! And so do they! It is great exercise and such a fun way to play with my beloved dogs. And, the people – you just won’t meet finer.
My attitude has remained positive. I am not really afraid. I usually don’t feel like it isn’t fair that I have cancer. (Who smoked? Me! Not that I think I deserve to be sick, but I guess my attitude is more like, “Why not me?”) Sometimes when everyone starts talking about their trial results and I have been too ill or tired to go, I am sad that I didn’t get to go play with my dogs and friends, too. The competitive side of me hates to see us fall behind in earning those qualifying scores and titles. But really? If that’s all life is, I think I may need to be re-examining my values a bit.
Being diagnosed with cancer brings some interesting insights into who your friends are. People who you thought were your good friends and that you would have done (and did) a lot for are not necessarily those that are there for you. And, then there are those that you liked but didn’t consider close friends who are more than there for you – who are willing to do anything and everything for you. Sort of makes you pause and say a little prayer of gratitude – for the insight and for the wonderful, wonderful friends who are there for you not just when you can do for them, but when you can’t. Those who remember you even if you are not physically where they are. Those who understand that it is hard NOT to be able to do the same things as they enjoy when you, too, enjoy it so much. Yep, I’m getting a bit maudlin so I believe we will move on from here!!! Wallowing in self-pity is ugly, no matter who is doing it. I have no patience for it – from myself or anyone else.
I have actually worked at maintaining a bright and cheerful attitude and I don’t dwell on being sick or require (or ask) that anyone else feels sorry for me. What I want to is to still be able to laugh and have a great time and for no one to feel uncomfortable around me because I have cancer and I may be dying.
Truthfully, we’re all dying with every breath we take. Some of us may have fewer breaths to take. If that’s me – well, I want the breaths I have to count!!!! I want to have fun and enjoy what life has to offer. Otherwise, why bother to go on living?
On the other hand, I do expect that people show a little respect for my weakened condition. The chemo makes me very susceptible to disease. If you are sick, please do not knowingly share my breathing space. You feel bad when you are fighting an infection or the flu; I could end up in the hospital or worse if I catch it. If you know you are going to be somewhere that I was planning to go, just let me know you are not feeling well, but are going to be wherever. I can and will stay home so that you can keep your plans.
Off of that soapbox and back to my surprising friends. Some of my friends have just been remarkable and deserve special recognition. It is scary to start recognizing people because inevitably, I will leave someone out and the very last thing I would ever want to do is hurt anyone’s feelings. Because I appreciate the friends who have offered to do things and been rebuffed by me and the friends who post little “I’m thinking about you” or “You are in my prayers” comments on Facebook. Those reminders that people care mean all of the world to me. So, so special. Sally from work just can’t do enough. She brings us food, food, food and so much love and concern. Sally and another friend from work, Cindy, are my chemo angels. They bought me a wonderful bag, pjs that I wear every night, socks, lotions, lip creams, the list goes on and on and on.
My friend Ann too has been there for me. Getting up early to walk with me so I don’t have to walk by myself, bringing me good food to eat, willing to do anything and everything.
Charlene brought me a warm, cozy jacket, socks, a blanket – so many things – even goodies for the dogs – wow! Just so much thoughtfulness. I often wonder if I would be so generous and thoughtful if it was them instead of me. It causes me to really think and reflect on that because I now know personally just how much small gestures mean – even a relatively simple “how are you doing” post on Facebook.
Get Well from Run As One Agility
Last but far from least – I just have to recognize Ed and Run as One Agility. I was signed up to do an agility trial but had to cancel because I was just not in good enough shape to go after chemo. Ed took a picture of me and my dogs and had everyone at the trial sign it. Framed it and brought it all the way over to me. It hangs in an honored spot in my house. I hadn’t cried much over my diagnosis (then or since), but I certainly did cry when I opened the package. Wow. I’ll have to get a picture of it posted here.
And, then there are my agility friends who will be with me on Sunday, Jan 6, at the Run as One trial. Some of them signed up for the first time ever for a NADAC trial so that they could be there to support Run as One since they supported me and to be there with me. What can you say??? What can I say? It is overwhelming and so very special.
The three weeks between chemo treatments dragged in some ways but sped by in others. In some ways, you want to keep those chemicals flowing in your body. The cancer is pretty rampant in my body and if the chemo can stop it in its tracks, then lets keep the chemicals there!!! On the other hand, it is just about the time that you start feeling pretty good for a good portion of the day that the time to “get lit up” returns.
I’d been told that every successive treatment is worse – the impact is cumulative. That makes sense. Each treatment takes you down more and more. Knowing how I felt during the worst times after Chemo #1 surely does not make me look forward to experiencing that again, but on a grander scale. I was upbeat, but not quite so bouncy when I returned to Texas Oncology on December 27 for my second treatment.
I had blood tests and a brief visit with Dr. Wilfong before going back to the infusion room. My blood tests came back great. It is so ironic that I am so extremely healthy except that I have this terrible disease that wants to kill me off sooner rather than later. My blood pressure is fine. My blood sugars are great. The only pills I take are folic acid (for some reason it is needed due to the chemo) and Vitamin D3 pills. I give myself a monthly B-12 shot. My first-ever mammogram came back completely clear; the first pap test in over 10 years was clear … I am very nearly the picture of health.
I had been monitoring the tumors on my neck and felt like they were smaller. Yeah, so small that I could no longer feel them! But, sometimes hope can play tricks on you so I wasn’t counting on the accuracy of my self-exams.
Great news! Dr. Wilfong couldn’t feel those tumors either! In fact, the first chemo treatment shrank them to the point that they cannot be felt. Maybe they are gone altogether. I sure do hope so! Even more, I hope that those masses of tumors in the lymph nodes in my lungs have responded in kind. Now THAT would be the absolute best news I have had in a long, long time.
So, knowing that the chemotherapy is working, I returned to the infusion room with Mom and Robert and lots of other women (and only a few men again). I had a great chemo nurse this time – I wasn’t fond of the first one. Neither of them have been all that forthcoming, but at least this one was friendlier and she definitely knew how to get an IV going without hurting you.
My chemo nurse commented on how soft my skin is. I have extremely dry skin and use lots of lotion. If you want some of the best skin cream around, you can make it yourself for a very low price. It works! Go to the local Family Dollar store and buy their brand of baby lotion, Vitamin E cream, and petroleum jelly. Mix it all together and slather it on after showers or whenever. Despite having the petroleum jelly in it, it is not greasy. (Here’s the recipe.)
After the chemo treatment was complete, Mom, Robert and I went to eat at El Fenix and then Robert and I came on home. As with the first treatment, I felt fine the remainder of the day and was okay on the next day as well. Even on the third day I managed to vacuum all of the downstairs and do a little bit of dusting (not nearly enough). I didn’t deep clean by any stretch of the imagination, but the fact that I could clean at all was remarkable to me (especially when you consider how much I hate to clean house).
But, the end arrived for feeling fine. The next couple of days were terrible.
Barney, the great comforter
I was so nauseated. The nausea pills didn’t work at all so I quit taking them. I didn’t want to eat or drink. I could drink ginger ale but nothing else. And it wouldn’t necessarily stay down. I stayed on the loveseat with my precious Barney right with me – usually on top of me.
I felt dehydrated but the thought of drinking anything made me queasy. I could eat on occasion… One friend posted on Facebook how she was going to have tomato soup and grilled cheese – comfort food – that’s what I fixed for myself too. Doesn’t necessarily sound like food for a queasy stomach, but it tasted good!
I kept a pot right beside me so that I didn’t have to try to make it to the bathroom or kitchen. I hate being sick. H-A-T-E it! I start wondering if this is really worth it. Being this sick is just no fun at all.
And then one day, not so many days later, you wake up and you’re back among the living! It feels so good to feel good again!!! You’re so glad that you feel good again that your first inclination is to overdo it. Which sets you back ever so slightly. It has been great having chemo during Christmas vacation – I haven’t had to worry about calling in sick or anything. On the other hand, I hate that my entire Christmas vacation has been nearly “wasted” with trying to feel better. Sometimes, I guess you just can’t make me happy!!! 🙂 I know I am dreading the holidays drawing to an end. But that is not something new. Even when I wasn’t sick, I dreaded giving up my free time and returning to work.
So, here it is, Thursday – one week since I had my last treatment. I feel pretty good, though I did take a long nap today and haven’t exerted myself much (at all). I was wishing we had agility class tonight but I don’t think we do. I sure do plan to be at class on Saturday. And, on Sunday, Cotton and Barney and I get to go to Terrell to play agility at the Run as One NADAC trial. I am so excited!! I signed up for 7 runs and I sincerely doubt that I’ll be up to that many runs. I imagine that I’ll be too slow to make time – NADAC times are very fast – but I bet I have a blast. It has been over a month since I have been to a trial. I hope I can do it!
This catches us up. I’m going to try to keep this updated on a fairly regular basis. Even if no one reads it, it will be a great journal for me! I’ll try to make it more interesting with more pictures and stuff when I start updating it regularly.