I just saw that a new series is being developed called “Experts by Experience.” I just love that title. It is especially meaningful to me today because of a recent experience at… READ MORE
I just saw that a new series is being developed called “Experts by Experience.” I just love that title. It is especially meaningful to me today because of a recent experience at… READ MORE
I am a latecomer to many things technology. I was once on the cutting edge, but that was now many years ago, I hate to admit. I can usually click my way around to figure out enough to be dangerous, but I am definitely slow when it comes to technology these days.
I was once active on Facebook. In recent months, I have decided a complete hiatus from it is healthiest for me. I signed up years ago for Instagram. I think I used it once. I signed up for Twitter so that I could participate in regular Twitter chats about lung cancer. Unfortunately, I find them difficult to follow and because I don’t know Twitter, difficult to understand.
Snapchat, nope. Pinterest and Google+ … well, yeah, but I don’t actually do anything much with them. (I do save some dog treat recipes to my Pinterest account.) There are other apps that I had never even heard of until recently that obviously haven’t made it to my list of favorites!
What’s all this have to do with anything, you may be asking…
Well, I am also new to audiobooks.
Chemo treatments gave me chemo brain. Chemo brain is a phenomenon that is real and that is different than anything anyone else experiences. Most of us who have it … and way too many of those of us who have had chemo do … hear friends and acquaintances try to commiserate by saying, “Oh! I have chemo brain, too! But, I never have had chemo.” Well, maybe, but doubtful.
One of the gifts of chemo brain has been the robbery of my ability to read. I used to love to read. I was a voracious reader from the time I was a young girl. I well remember my mom dropping me off at the Midland library, where I would wander the aisles for hours. She would come pick me back up and I would have checked out a big stack of books, all of which I would read before time to return them.
After the advent of chemo, concentrating long enough to read a page, much less a book, became difficult. Remembering what I had read was just not happening.
So, I quit reading. In the last year, I have managed to read a few books, but they have to start off very engaging. And, many may start off engaging, but I just can’t read them. So, again, I usually just don’t try to read much.
In the last few weeks, I have discovered a new way of “reading.” Audiobooks. I have now listened to two. One, by Greta Van Susteren, Everything You Need to Know About Social Media (Without Having to Call a Kid), taught me all about the social media apps I need to learn more about. It was a book I enjoyed a lot. I want to see the hard copy now.
Today, I listened to A Man Called Ove. It is a nine-hour recording. I listened straight through. I admit that I may have slept through a couple of parts. Not because it was boring, but just because I laid my head down … and when I did, I fell asleep!
No, the book wasn’t boring at all. It was so entertaining. I never thought that a “book on tape” could hold my interest, but I was wrong. My only problem with them is that once I start them, I don’t want to stop. I want to listen all the way through. And, nine hours is a long time to invest all at once! Of course, because I am a slow reader under the best of circumstances, nine hours is less time than I would have likely invested if I was actually reading the book myself, especially now, with my chemo brain.
A Man Called Ove had me laughing out loud over and over again. I was so absorbed in the book that I really never thought about cancer or disease or anything other than the book.
So, the point of this post is to encourage my friends who, like me, suffer from chemo brain to consider listening to books on tape. You can get them from your library. That’s where I have been getting mine. I am getting mine online so that I don’t even have to worry about returning them. When my time is up, the program takes them back. They’re never late!
My library offers books and more using two different apps. One is called Libby and the other is Hoopla. It is likely that your library uses these apps or similar to provide books and other resources to you.
Libby allows library card holders whose libraries participate to borrow ebooks and audiobooks. If you have a library card, see if you can find your library among those that participate. You can use Libby’s built-in e-reader or send books to your Kindle. The Libby app, which is part of OverDrive, includes an audiobook player.
Hoopla’s Web site explains its service options:
hoopla is a groundbreaking digital media service offered by your local public library that allows you to borrow movies, music, audiobooks, ebooks, comics and TV shows to enjoy on your computer, tablet, or phone – and even your TV! With no waiting, titles can be streamed immediately, or downloaded to phones or tablets for offline enjoyment later. We have hundreds of thousands of titles to choose from, with more being added daily. hoopla is like having your public library at your fingertips. Anytime. Anywhere.
Even if you can’t get out of the house, or out of bed, for that matter, a book on tape might be a really nice diversion for you. I stream mine on my cell phone and wear an inexpensive pair of earphones to listen (I did run the battery out of the first pair and had to change to the earpiece I bought to talk on the phone). No holding the book, no energy taken at all. But a nice way to forget your situation and lose yourself in a mystery or love story or comedy that makes you laugh out loud. (Try A Man Called Ove for laugh-out-loud fun.)
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.)
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.
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.
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!!!!
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.
|Merry Christmas, Y’all.|
Who knew? LOL! It seems like there is something to celebrate every single month of the year! There’s absolutely nothing wrong with that!
When I was first diagnosed with cancer back in October 2012, no one expected me to live very long. Stage IV lung cancer is pretty deadly. The following facts are from the American Cancer Society’s Web site about lung cancer in 2015:
- About 221,200 new cases of lung cancer (115,610 in men and 105,590 in women)
- An estimated 158,040 deaths from lung cancer (86,380 in men and 71,660 among women)
Lung cancer accounts for about 27% of all cancer deaths and is by far the leading cause of cancer death among both men and women. Each year, more people die of lung cancer than of colon, breast, and prostate cancers combined.
The later the stage of the cancer, the more likely it is that you will not survive even a year. Only 4% of those diagnosed with late stage (aka distant or metastisized) cancer are expected to live five years after diagnosis. The following information is copied from the American Lung Association:
- The lung cancer five-year survival rate (17.8%) is lower than many other leading cancer sites, such as the colon (65.4%), breast (90.5%) and prostate (99.6%).
- The five-year survival rate for lung cancer is 54.0 percent for cases detected when the disease is still localized (within the lungs). However, only 15 percent of lung cancer cases are diagnosed at an early stage. For distant tumors (spread to other organs) the five-year survival rate is only 4.0 percent.
- Over half of people with lung cancer die within one year of being diagnosed.
If you let yourself think about it much, it will scare the living daylights out of you! According to Lung Cancer Alliance, 432 individuals die of lung cancer every single day.
Before I step off of my soapbox, I need to address the sad lack of funding for lung cancer. It makes my blood boil. It should make everyone’s blood boil. Since lung cancer is the third most common (behind breast and prostate) and the most deadly cancer there is, it is bound to impact your life either directly (you get diagnosed yourself with it) or indirectly (someone you love gets diagnosed with it).
When someone hears a person has lung cancer, the first question is not, “Will they survive?” Nope, the question everyone asks is, “Oh, do they smoke?” Because we all know that (1) lung cancer only happens to smokers and (2) all smokers deserve to die of lung cancer because they brought it upon themselves. Right?
Let’s look at some facts. These are for 2015; they are not old and outdated.
In 2015, the Centers for Disease Control and Prevention (CDC) estimates that 157,499 men and women will die of lung and bronchus cancer. (I realize this number differs slightly from what the American Cancer Society estimates. I do not know why the numbers are different, but they are both estimates.) During the same time, 52,028 people are expected to die from colorectal cancer, 41,557 women from breast cancer, 38,797 from pancreas cancer, and 27,245 men from prostate cancer.
Despite common belief, lung cancer affects never-smokers, too. And, in 2015, 28,192 of them are expected to die from the disease.
The fact is that only 20.9% of those diagnosed with lung cancer are active smokers. Nearly 18% (17.9%) have never put a cigarette to their lips. And, 60% are former smokers. Some of those former smokers have not smoked for 40 or more years. (These stats come from the CDC report, “Cigarette Smoking Among Adults – United States, 2006″.) So much for the fact that only smokers get lung cancer.
The federal government devotes billions of dollars to health issues. Funding for cancer is estimated to be $5,414,000,000 in 2015. Of that, $255 million will be dedicated to lung cancer. That amounts to a measly $1,153 allocated for each person expected to be diagnosed with lung cancer. Per death (158,040) from lung cancer, $1,619 is allocated.
By contrast, a total of $685 million is expected to be designated for breast cancer projects. According to the American Cancer Society, a whopping 231,841 individuals (mostly women, but men also get breast cancer) will be diagnosed with invasive breast cancer during 2015. An additional 60,290 will be diagnosed with carcinoma in situ (the very earliest stage of breast cancer). Of all of those diagnosed, a total of 40,290 are expected to succumb to their breast cancer. The federal government is spending $17,002 in 2015 for every death that will occur from breast cancer.
Prostate cancer is the second most prevalent cancer in the United States. In 2015, the American Cancer Society expects that 220,800 men will be diagnosed with prostate cancer. It is expected that 27,540 men will perish from their prostate cancer. The federal government is expected to spend $255 million on prostate cancer (the exact same amount as being spent on lung cancer) in 2015. For every death from prostate cancer in 2015, Uncle Sam is spending $9,259.
Let’s look at this again:
Breast Cancer 40,290 deaths $17,002 allocated
Prostate Cancer 27,540 deaths $ 9,259 allocated
Lung Cancer 158,040 deaths $ 1,619 allocated
Does anyone else wonder why the disparity?
But, I digress. This post is about Immunotherapy.
If one must be diagnosed with cancer, this is not a bad time. Scientists and researchers are on the brink of making astonishing discoveries. More strides are being made now than in previous decades. Exciting strides!
Immunotherapy is a treatment that allows a person’s own body to attack cancer cells. According to the Cancer Research Institute, immunotherapy “represents the most promising new cancer treatment approach since the development of the first chemotherapies in the late 1940s.”
Yes!! I agree!! Having been put through the horrors of chemotherapy, I can attest that immunotherapy is exciting. For anyone wishing to learn more about immunotherapy, a good place to start is the Cancer Research Institute.
When I was first diagnosed with lung cancer, I started a chemotherapy protocol of Carboplatin, Avastin, and Alimta. Avastin is not technically chemotherapy. It is a drug designed to starve tumors of blood supply (anti-angiogenic therapy). Alimta and Carboplatin are both chemotherapies that attack tumors, but also affect healthy cells. They are basically poisons. The hope is that they do more damage to cancer cells than healthy cells.
I can’t begin to describe what it is like to go through chemotherapy. I would get my infusions on a Thursday. By Saturday, I was in bed, except for when I had to be up throwing up. For two or three days, I would be so sick, I could just barely move. No anti-nausea medicine worked. On top of the extreme nausea, a fatigue that cannot be described set in. It was difficult to walk from the couch to the restroom or to the refrigerator without resting.
You gradually begin to feel better. By the end of the second week after the infusion, I could make myself, through sheer will power, go to agility practice. This is a testament to just how much I love agility! By the third week, I was feeling pretty good, considering.
Toward the end of the time that I received my chemo infusions, I was starting to get very depressed. It seemed so futile to finally feel better just to knowingly make myself sick again with yet another infusion. I am afraid that if the infusions had lasted much longer, I would have either quit them or would have had to take anti-depressants.
And, the fact is, I was healthier than most who were getting chemotherapy. My blood tests remained perfect throughout my treatments. Most people, at the least, have their white blood cell counts tank. No one really knows why mine didn’t. My blood pressure also stayed in the normal range.
Since you are being infused with poison when you are getting chemotherapy, you can only get it for so long before the benefits are outweighed by the drawbacks. Chemo itself can (and does) kill cancer patients. As noted by the World Journal of Clinical Oncology:
Over the past few decades, platinum based chemotherapy is the standard of care for advanced stages of NSCLC. These systemic therapies have significant toxicities and confer unacceptable morbidity.
My tumors responded well to the chemo treatments. They shrank by half or so. But, as soon as the chemo stopped, the tumors took off. They were back to their initial size in a matter of weeks.
My oncologist told me that I basically had two options. I could either (1) undergo a different kind of chemo, one that historically made people sicker and was less successful than the first treatment I received, or (2) I could get into a clinical trial and at least help researchers understand some of the new and coming treatments for lung cancer patients in the future.
I didn’t think for a second about the choice. I opted for participation in a clinical trial. I had no desire to be sicker than before! And, if I was going to die, I might as well be a guinea pig for those coming behind me. I really didn’t think much about the clinical trial affecting ME positively.
Nevertheless, the best thing that has happened to me during this cancer journey was the decision to participate in a clinical trial. Few choose this route. I’m astonished by that. I would more than likely be dead if I had chosen to just continue with the traditional treatments.
I started immunotherapy treatments in July 2013. Information about the trial I am participating in can be found at https://clinicaltrials.gov/ct2/show/NCT01673867?term=BMS-936558+Docetaxel&rank=2 and http://news.bms.com/press-release/opdivo-nivolumab-first-pd-1-inhibitor-demonstrate-superior-overall-survival-versus-sta. Unlike chemo treatments, immunotherapy does not poison you, so the treatments never end (unless they quit working). Because immunotherapy isn’t poisonous, you don’t suffer the horrid side effects of chemotherapy. Or, I haven’t. Some people don’t have quite the same positive reaction that I have, but many do.
I have been getting immunotherapy for nearly two years now. I get treatments every two weeks. I have CT scans every 6 weeks (so often, that I can now drink barium without gagging).
Like when I was getting chemotherapy, my blood tests have remained perfect throughout the treatments. Blood pressure and oxygen levels have stayed in the normal range. The only side effect from the immunotherapy that I have suffered is that my thyroid has quit working properly. No big deal. I just take Levothyroxin every morning to keep the thyroid functioning as it should.
The CT scans have shown that the tumors have not grown nor spread at all since I began immunotherapy. One radiologist who reads the scans calls the tumors “scars.” My oncologist does not necessarily agree that they are simply scars. Since we don’t know for sure, we continue the treatments. At the least, it is an insurance policy against the lung cancer.
Because of immunotherapy, I have totally reclaimed my life. I am back to running agility regularly. I keep testing my stamina levels and I keep passing those tests!! WhooHoo!!
As you have seen from my previous blog posts, I started a garden for the first time ever. I go to the movies and out to eat with friends. My calendar rarely has a day without something scheduled to do.
No one knows how long the immunotherapy will continue to work. But, from what researchers know now, patients do not build up a resistance to it like they do to targeted therapies. In addition, it appears that the immune system continues to work against tumors for an extended time even after treatments end.
Immunotherapies are being tested on all kinds of cancer. The Cancer Research Institute (CRI) shows how it is working on their site at http://www.cancerresearch.org/cancer-immunotherapy/impacting-all-cancers. The following quote is from the CRI:
From the preventive vaccine for cervical cancer to the first therapy ever proven to extend the lives of patients with metastatic melanoma, immunology has already led to major treatment breakthroughs for a number of cancers. Every cancer type is unique, though, and immunology and immunotherapy are impacting each cancer in different ways.
In the future, those diagnosed with cancer may never have to go through the horrors of chemotherapy. Perhaps even surgery and radiation can be avoided through the use of immunotherapy. And, the death rates from cancer may decline sharply.
P. S. If you have cancer and you are interested in immunotherapy, you can find out what trials are available by visiting the Clinical Trial Finder.
What does lung cancer look like? Do you suppose that it looks like someone who is about 70 years old, very emaciated, with a cigarette in her hand? Someone who looks like they are about to die?
Or do you envision a 20 year old girl with her whole life ahead of her? Except that she’s currently bald from her chemo treatments and searching desperately for the drugs that will keep her alive? Or, maybe you see a beautiful, cheerful 24 year old young woman who has already lost part of her lung? Girls who were physically active; girls who never smoked; girls who weren’t around smoke?
In the picture below, three of the people are not lung cancer survivors. Can you guess which three? I bet not. Because lung cancer doesn’t have “a look.”
|Photo credit: Randy Elles Photography LUNGevity Foundation — in Washington, District of Columbia.|
Who gets cancer? Is it the 20-something college student? Is it the 30-something veterinarian? The 40-something TV reporter? The 50-something long-distance bicycle rider? Is it your 60-something vegetarian neighbor? Is it your postal worker? Your doctor’s office receptionist? The professional baseball player? The IT superstar down the hall? Your doctor? If you answer “yes” to all of these, then you are absolutely correct.
The fact is, no one is immune. Whether or not they smoked. Whether or not they exercised. Whether or not they ate only vegetarian foods. If they have lungs, they are susceptible to getting lung cancer.
The scary thing about lung cancer is that there are not often many symptoms until it has advanced so far that there are not a lot of treatment options. If you suddenly develop a smoker’s cough, but you didn’t smoke, or if you have extreme shortness of breath, wheezing, or asthma-like symptoms, or if you begin to drop weight for no reason, you might have lung cancer. A CT scan can be done in a matter of minutes to detect if there are tumors in your lungs. The earlier lung cancer is detected, the more likely that you will survive.
|Photo credit: Randy Elles Photography LUNGevity Foundation — in Washington, District of Columbia.|
Here’s a link that I hope will stay active for a long time. It has pictures that were contributed to WhatNext.com by cancer survivors. Now, these people do not all have lung cancer, but they are all surviving some kind of cancer. I hope you’ll follow the link. I think you will be encouraged.
I don’t know about you, but what I notice most is how many of these individuals have large, happy smiles. Smiles that reach their eyes. These are cancer survivors (some who are “NED — No evidence of disease” and some who are newly diagnosed and in the throes of chemo). They have cancer. Cancer doesn’t have them.
|“You can cut all the flowers, but you cannot keep Spring from coming.”|
Albert Einstein once said, “In the middle of difficulty, lies opportunity.” I believe that. Do you?
The fact is that while I would never choose to have cancer, it has presented many opportunities for which I am very grateful. Isn’t that something?
My motto has been and continues to be, “I have cancer, Cancer doesn’t have me.” What’s that mean?, you ask. Well, it means that I try hard not to be defined by cancer. I try to live my life to the fullest.
In fact, in my way of thinking, every moment I spend worrying or fretting over having cancer is a moment where cancer wins this battle. It robs me of my joy for that length of time. I don’t know how much time I have left here on this earth (none of us do). But, what I know is that I want to make the most of every moment that I’m here!
Cancer has allowed me the opportunity to finally concentrate on me, not on everyone else around me. I always worked a job or two and put 110% of myself into it. With family obligations taking up the remaining hours in the day, there was just never really any time left over for Donna.
But, having cancer allowed me to quit working. What a blessing that was, especially since my job had gone from good to very, very bad with changing regimes. Politics. Aren’t they great? (NO!!!) For the first time in my adult life, I have had the time to do things that make me happy. And I have enjoyed that to the max!!!
You probably have already figured out what those things are that make me happy.
I’ll just state right at the beginning, my joy comes from the Lord. He is the reason for my happiness. He is the reason I do not worry about dying or about having cancer. He is the reason I can enjoy all of the activities listed below. Without the peace I have from Him, none of the rest of this would be possible.
I love, love, love agility. I found this sport late in life. I had really only just gotten started in it when I found out I had cancer. Barney and I were trialing nearly every weekend and sometimes Cotton came along! (She got to come along more often then than now … the one bad thing about this retirement stuff is that my income decreased by two-thirds. I have to be much more frugal than I used to be … talk about a hard lesson!!)
Barney was then and is now a superb agility partner. That little dog has a huge heart. He will play with me, over and over and over again, until I can’t go any longer. He tries so hard to please. Always, his goal is to make me happy. Because if mama is happy, everyone is happy! Seriously, he loves agility, but mostly he loves me and he wants to do what pleases me.
I was initially taught that running agility meant running alongside your dog, directing him or her to do whatever the next obstacle in the sequence was. Many venues require that you stay fairly close by your dog in order to direct him over the obstacles correctly. My venue of choice, NADAC, is a little different. It allows you to work away from your dog.
Running your dog with distance between you and him is a completely different way of handling. My personal belief is that it is more difficult to teach your dog to run without you right beside him. It is especially challenging when the dog has first been taught to work right beside you.
Barney and I are in the process of learning to work at a distance from one another. I practiced my new skills some at the Run As One trial over the Memorial Day weekend. The video above shows our runs from Sunday of the three day trial.
Practicing our newly learned skills at distance (we are still very new in the learning process) is only part of what made me smile at the Memorial Day trial. The other is that I had the stamina to go help set-up for the trial on Friday, run four runs on Saturday, return Sunday morning for three more runs, finish with three runs on Monday … and stay to help tear down and load up all of the equipment. Previously, I had only tried to trial one day for fear of being too tired the following day. REmarkABLE!!! I am so blessed.
I wish I had a dollar for every time Robert suggested I start a garden. I always refused. I was just not interested. Then, this spring, I changed my mind. I don’t even know why I decided this was the year I wanted to plant tomatoes and cucumbers and squash and zucchini. We have watermelon and cantaloupe and bell peppers. And okra. And something that I no longer remember what it is!!! I can’t wait for its fruit or vegetable to appear so I will know just what it is!!
I know nothing about gardening. Like a bull in a china cabinet, my typical way of doing things, I just started buying plants and putting them out in the ground. I STILL know nothing, but I am fortunate that my plants seem not to care all that much.
Here are some pictures I took this morning. I go out and look every single day. I take pictures at least a couple of times a week. Sometimes more often! The little fruits and vegetables are like my babies! I love watching them … except for an impatient person like myself, it is also a bit of a challenge!
|Now that the sun has begun shining again, the ‘maters are ripening!|
|The herb garden. Yum!!!|
|Zucchini? Squash? Cucumbers? All of the above?|
|Squash … some will be ready for picking very soon!|
|More tomatoes that will soon be ripe enough to pick and eat!|
|Yellow zucchini. The plant thrived while it rained daily. Not looking so good now.|
|The bell pepper!!! It will ultimately be a red pepper. There’s only one on the bush!|
|Watermelon. This plant has not always looked as healthy.|
|My Meyer Lemon Tree. What fun!|
I am learning as I go. Next year, I hope I learn from some of my mistakes. I crowded things this year. They looked so small and so widely spaced when I first planted them. Do I hear you laughing???? If you have done much gardening, I am sure you are!
I have been reading that you should plant certain plants with one another … and shouldn’t combine others. Next year, I hope to have an organized plan! This year, I just walked down the rows at Lowe’s and chose plants that would produce vegetables or fruit that I thought I might want to eat.
I gave away some of the first fruits of my labor. Carol got a bag with squash, zucchini, and a couple of tomatoes. I plucked a little tomato off of the vine yesterday morning as I was walking out of the backyard to the car. I gave that to Linda. I THINK I am going to have plenty to share. I hope so.
I guess it is pretty obvious from my blog that I enjoy photography! Having cancer has opened my eyes to all of the beauty that surrounds us. I love to take my camera and just explore the backyard. I NEED to take my camera and explore a little further away than my backyard!! But, for now, I have been content to wander through the yard and take pictures of dogs, flies, bees, flowers, fruits, and veggies … and an occasional lizard. Hopefully, there will be no opportunities to snap a photo of a snake.
The pictures below were taken this morning. I originally grabbed the camera because I saw the bees inside the flowers of the squash plant. I thought they were certainly worth a few pictures!! As long as I was out there with the camera, I explored a bit more!
|I love these delicate little flowers. No clue what they are.|
|Another little flower that I think is pretty. It is some wildflower that I planted.|
|This plant and the one below speak to me. This little weed is growing out of the brick wall!|
|This petunia came from I don’t know where. Like the little flower above, it is growing in a crack in the brick wall. Perseverance. At its best|
|That frog is lucky it is in the water. Cotton was VERY interested in it!|
|We have so many of these bugs. I don’t know what they are, but they sure like my new garden.|
|Flies like the garden too.|
|I love quotes. I love photography. On occasion, I try to combine the two. These are the bees that initially sent me running for the camera.|
My calendar is usually very full. I don’t like to have very many days when I don’t have something to do. Currently, I have agility class twice on Tuesday and once on Friday. I may have to quit going to the Tuesday night class – it is more traditional agility (where you run right beside your dog) and I don’t want to mess up what Barney and I are learning with our distance. We are going to be taking a break from our Friday class as well. It has just gotten too hot. So, for the summer, we will rely on practicing at the park at 7 AM rather than going to class at 10:30.
On days that I don’t have agility, I love to meet my friends for lunch and/or the movies. I rarely ever saw a movie before I retired. But, since I have been retired, I have been lucky enough to go to quite a few.
Walks. Linda and I complain nearly every single morning when we meet about how we didn’t want to come! We meet at 6:30 AM now that it has gotten so hot. We never want to get up. But, once we are at the park and walking, we’re glad we made the effort. The dogs love their walks as well. And, it is so good for us! On days that I don’t walk, I usually just waste the time that I would be spending getting some exercise. And, boy oh boy, do I need exercise!!
You should see my Kindle app. I have so many books on there just waiting on me to read them. I keep buying them for those times when I might not feel like doing the things I am doing now. I hope that day doesn’t come for a long time. But, when it comes, I’m prepared!!!
So back to the title of this post. “In the middle of difficulty, lies opportunity.” Cancer is my difficulty. But, oh the opportunities it has brought with it! If I hadn’t been diagnosed with cancer, I would still be plugging along at a job that I had grown to hate instead of enjoying every waking moment! There’s just never enough time to get everything done that I want to do! Even now! But, now all of the moments are full of things that I love to do.
Hedonistic? I feel like maybe so. But, I also think that I deserve the bliss I am experiencing now. Not because I have cancer, but because I have worked so very hard all of my life. It is wonderful to have the OPPORTUNITY to work hard at having fun instead of at a job.
I decided to do something a little different today when I went for my blood draw, doctor visit, and immunotherapy infusion. I thought it might be interesting to somebody if I documented my visit, from start to finish.
I didn’t get every picture I hoped to get. My oncologist didn’t see me today so I didn’t get a picture of him or his precious nurse (who will be leaving any day to have her baby). My favorite oncology nurses had other patients today so I also didn’t get any pictures of nurses in the infusion area. Next time, I hope!
We arrived at the hospital at 12:15. We were supposed to be at the hospital by 12:30. You check in at the main desk and wait to be called.
I didn’t look at my watch, but I am certain we didn’t wait more than 10 to 15 minutes before I was called back to have my blood drawn. At UTSW, the wait is rarely very long.
Right after I began treatments at UTSW, I got a port installed in my chest. You can read all about it at http://mybattlewithlungcancer.blogspot.com/2013/08/got-port.html. Unfortunately for me, I received all of my chemotherapy prior to going to UTSW through an IV in my arm instead of getting a port from the get-go. My veins are shot now. You can’t have poison infused into your body through those vessels and expect them to stay supple and healthy.
At any rate, with a port, getting blood is easy-peasy. It takes a special oncology nurse to access the port. Some are better at it than others! But, overall, there is very little pain involved and there is NO searching for a vein or sticking you again and again and again trying to get blood to flow.
At every visit, which in my case is every two weeks, a very comprehensive blood test is done. From three to five tube of blood are drawn and tested prior to visiting with the doctor. If your blood levels are not good, the oncologist may decide to put off chemo or might change the amount of chemo. In my case, there has never been a problem. I am often heard saying that if I didn’t have cancer, I would be as healthy as a horse.
There are several nurses who draw blood through a patient’s port, but I usually get Grace. We hit it off from the get-go. I love to see her every two weeks and I think the feeling is mutual.
We both have to wear masks while she accesses my port in order to reduce the chance of infection. I hate wearing the mask. My glasses always fog up while I’m trying to talk!
Below, you can see the needle that Grace is going to use to access my port. It is rather large!
It only takes a few minutes to get my port accessed and the blood drawn. Because I really like Grace, we often visit for a few more minutes before I return to the waiting room. You can see all of the tubing attached to the port. When I go for my infusion, it will be administered using this access point. Notice the pink circle on my sweater. Any guess what that is for?
Believe it or not, people were leaving the hospital with their ports still accessed. The pink dot is supposed to alert hospital personnel that my port is still accessed. I personally can’t imagine someone leaving the hospital with all of that tubing sticking out of their chest, but that’s just me. Chemo brain, perhaps, makes some people forget.
I don’t know why, but this man felt special to me from the beginning. You see all kinds (including crazy kinds like me) at the hospital. This precious man seemed to lack confidence and had something wrong that caused him to shake violently. Another patient offered to open his lunch after he fumbled with it for a few minutes.
As it turns out, I ended up feeling so sorry for the man. It seems his wife is the one with cancer. I don’t know if she turned mean after she was diagnosed, if she was having a really awful day, or if she’s always been mean. She yelled at the man (loud enough that we could all hear it) for not sitting up straight and then for shaking while eating. Hello?! He obviously had a physical problem that caused the shaking. Now, it is possible that his shaking is worse when she is around. If she was MY wife, her being near would make me shake. Violently.
When they came to get her to take her back to see the doctor, the man still wanted to be supportive. He asked if she wanted him to come along. She rudely told him she didn’t care one way or the other. So, he went with them, trailing behind a bit. But, long before they would have reached the doctor’s office, he was back in the waiting room. I guess she decided she cared if he came after all and sent him back to us. I didn’t, but I just wanted to hug him.
On a happier note, we have had rain here in Dallas day after day after day. I’m not complaining because we needed the rain desperately. Last year, by the end of April, we had received only 3.93″ of rain. This year, we had been blessed with 14.67″ and so far, it has rained nearly every day during the month of May. It was exciting to see a break in the clouds while we were in the waiting room. We could see bluish skies and even a hint of sunshine!!
I am a people watcher and I tend to make up stories about the people I’m watching…. Well, this guy looked like a thug to me with his shorts down far below his butt. He also had jailhouse-appearing tattoos all over his arms and neck. I HATE seeing men with their pants worn far below their waists. I really think it is out of place at a cancer-treating facility.
I hate the way the guy dressed … and if I was a betting woman, I would guess he hasn’t been out of prison for all that long. I’ll give credit where credit is due, though. His children were very well behaved and he seemed to take an active part in their lives. So, I guess pants worn with the waistband closer to the knees than the hips is not a clear indicator of how a person acts.
I did get a kick out of watching him try to walk when they left. His shorts were so low that he couldn’t get a decent stride going. Sheesh. Who thinks that look is cute or macho or whatever? Not old fogie me.
People watching makes the time fly by! Soon, an aide comes to get us to take us to the doctor’s office.
Things at UTSW move along like clockwork. I hear about others who go elsewhere that have to wait and wait and wait. Not so here. It is very, very rare that we don’t get in to see the doctor within an hour after the blood is drawn. The reason for the hour wait is that it takes an hour or so for the blood testing to be completed.
I was hoping I would see the doctor today so I could get a picture with him, but I guess he was too busy. I need to quit referring so many people to him! Maybe he’d have more time to see me!! (I am not honestly complaining. I am delighted that more and more of my friends are seeing him because I hope they have the same luck as I have with him treating them.)
On the other hand, I love Sharon. She is very thorough and we have a GREAT time laughing with one another. My visit usually lasts longer than it probably should because we enjoy the time together.
Sharon wasn’t quite sure what was going on until after our selfie was taken! You can tell by her beautiful smile that she’s a lot of fun. She’s also very smart and very dedicated. She’ll take as long as you need her to answering questions and addressing concerns.
My blood tests were fine. My CT scan that was done last week showed that my organs are “unremarkable” – a good thing!!! I have no swelling or lumps. The exam doesn’t take too long. Since all is well, the immunotherapy I receive can be ordered from the pharmacy. We return to the waiting room one last time.
In the lobby, there is a giant Chihuly sculpture. When I first saw it, I hated it. I have grown to love it over time. It is very intricate. What do you think? Love or hate or indifferent? Can anyone be indifferent to such a piece?
We now have to wait for a chemo room to become available. And, for the pharmacy to get the drugs ready.
Robert always comes with me to chemo. It is a long boring day, but he never complains. He doesn’t have to come, but it sure makes the day go more smoothly having him with me. I have read of so many couples that break up when one is diagnosed with cancer. I am so happy that our marriage is probably stronger now than ever before. Which says a lot. In August, we celebrate 41 years of wedded bliss!
It isn’t long before we’re escorted back one last time. This time, we are going to the infusion room. Where I received chemo, the infusion room was one giant room where everyone getting a treatment sat in chairs side-by-side. As much as I enjoy people watching, I always hated that room. It was such a big, cold, depressing room, just full of cancer patients receiving poison into their veins. Some people got sick, some slept, some visited … but it just seemed it should have been done in private.
When I switched to UTSW, I was DELIGHTED to find that we would have individual chemo rooms. Each room is a little different. The one we had today was relatively small … but certainly big enough to be comfortable. There is a television on the wall across from the infusion chair. The infusion chair itself is very comfortable and I usually request a heated blanket when we get to the room. I love those heated blankets!
The chairs for the visitors are not nearly as comfortable as the ones provided for the patient!
An aide always brings us to the infusion room, retrieves the warm blanket and any requested snacks. I am not sure what this aide’s name is, but he is my favorite in the chemo area. He is always so cheerful and he’s a hard worker. He wasn’t the person who brought me to the infusion room today, but he walked by and saw me in the chair. “Hello, Mrs. Fernandez,” he said. I asked him if he’d come take a selfie with me and he obliged!
This is the best picture I could get of how the port looks when it has been accessed and readied for an infusion. In the second picture, you can see how all of the tubing is attached. I think I have already said it, but the port makes getting a treatment much, much easier.
My infusion takes one hour. When I was getting chemo, an infusion could take from two to six hours. I like the one hour treatment much more!! So, my treatment began at just minutes after 3 PM. And I become a clock watcher!
YES!!! It is 4:00 … the treatment should be over! Most of the drug has dripped into my blood stream. Where is the nurse to disconnect me??
What’s going on? Where’s the nurse? It is now 4:15 and here we still sit! Typically, the nurse appears immediately when the hour of infusion ends. Something must have taken my nurse’s attention today because she was late getting to our room.
It isn’t too long, though, before she comes in and prepares me for departure. She has to flush the port with herapin, disconnect the port access, give us a parking pass, and send us on our way. We are soon outside and waiting on the valet to bring our car.
You can’t really tell from the photos, but the campus at UTSW is amazingly beautiful and serene. One of these days, I am going to take my good camera and spend an afternoon exploring the grounds.
It smells divine sitting near the wood-burning grills!
Steaks were cooked to perfection and the baked potato was delicious. A perfect ending to the day!
You know, I try to stay really upbeat most of the time. I am fairly successful at it. Like Dann Wonser says, most trials and tribulations we lung cancer survivors face are very tiny, while cancer is VERY BIG. (http://www.dannwonser.com/blog/a-little-disaster-can-be-a-good-thing/5/4/2015 … you really HAVE to read this, it is hilarious!). I think many cancer patients agree that we no longer sweat the small stuff … and most everything we face in our lives besides cancer is small stuff.
But, I came across the following article today: http://www.ksat.com/content/pns/ksat/news/2015/05/08/questions-raised-over-funding-for-cancer-research.html. It distressed me a lot. As did most of the reaction I received after I posted on Facebook about it.
The article was written by Myra Arthur, an anchor/reporter for ABC affiliate KSAT-12, a San Antonio, TX affiliate. Ms Arthur questions, as do I, why funding for lung cancer research trails so far behind that of other cancers, especially breast and prostate. Her advocacy makes me wonder if somehow her life, too, hasn’t been touched by lung cancer. Most people ignore it otherwise. That’s just the sad fact.
Here are some facts about cancer – some good, some not so good:
1. The two largest federal agencies that fund cancer research are the National Cancer Institute and the Department of Defense. These two agencies funded breast cancer research at $802 million in 2014. Prostate cancer research received $334 million.
2. Breast cancer is expected to be found in 234,190 men and women in 2015. (That’s right! Men can get breast cancer, too!) During 2015, 40,730 people are expected to die from breast cancer. That’s too many, for sure, but basically, if you get breast cancer, you have very good odds of surviving at least five years. These odds have increased exponentially over the past few years as more and more attention has been given to the disease.
A whopping 29% of all cancers diagnosed will be breast cancer. About 15% of all cancer deaths result from breast cancer.
3. Prostate cancer is the most common cancer among men. It nearly seems like every man is going to be diagnosed with it if they live to be old enough. I have gotten so cavalier about it … “oh! prostate cancer. minor inconvenience. treat it. be done.” I wasn’t quite so sure of myself when one of our very best friends died from it only months after diagnosis. (I think he waited REALLY long before seeking treatment and it had metastasized throughout his body.)
So, the facts for prostate cancer are: 220,800 men are expected to be diagnosed with prostate cancer during 2015. Prostate cancer will account for 9% of all cancer-related deaths this year.
4. And then there’s lung cancer. Research funding from the two major federal agencies for this disease during 2014 was a whopping $265.6 million. Let’s remember. Breast cancer got $802 million and prostate got $334 million. Hello????
During 2015, it is estimated that 115,610 men and 105,590 women (total of 221,200) will be diagnosed with lung cancer. Most of these diagnoses will be late stage because lung cancer typically doesn’t make itself known until it has metastasized. It is somewhat treatable if found in early stages, but in late stages, the prognosis is downright bad.
Lung cancer is expected to claim the lives of 86,380 men (that’s 28% of all cancer deaths) and 71,660 women (26% of all cancer deaths) for a total of 158,040 people succumbing to lung cancer in 2015. An awful lot of families are losing their children, their moms and dads, and/or their grandparents to this insidious disease.
So, the likelihood that you’ll get breast cancer if you are a woman or prostate cancer if you are a man is somewhat greater than that you’ll get lung cancer. Pray that you get one of these cancers and not lung cancer. Because, if you get breast cancer, you have an 89% chance of surviving at least five years. Prostate cancer has even better odds. Over 99% of prostate cancer survivors will still be living life in five years.
But, if you are one of the unlucky ones who gets the lung cancer diagnosis, you have much worse odds. Let’s just take a quote right out of Cancer Facts and Figures 2015, a publication of the American Cancer Society:
The 1- and 5-year relative survival rates for lung cancer are 44% and 17%, respectively. Only 15% of lung cancers are diagnosed at a localized stage, for which the 5-year survival rate is 54%. More than half (57%) are diagnosed at a distant stage, for which the 1- and 5-year survival is 26% and 4%, respectively. The 5-year survival for small cell lung cancer (6%) is lower than that for non-small cell (21%).
So, does this make any sense to you? Because it sure does not make sense to me. It breaks my heart at the same time as it totally infuriates me.
Did you know that ONE in FIFTEEN will be diagnosed with lung cancer? Those are some pretty scary stats. Most of us have more than 15 people in our circle of family and friends. That means you are very likely to be directly affected by lung cancer. Either because a loved one is diagnosed or because you, yourself, get that news someday. When the word comes that you or your loved one has lung cancer, I wonder if you are going to wish more had been spent on lung cancer research? Because right now, the odds that you will live even one year after lung cancer is found in your body are very, very slim.
There is no stigma associated with getting breast cancer or prostate cancer or colon cancer or, I suppose, any other cancer. But, people, in general, seem to think that people who get lung cancer deserve it. After all, isn’t lung cancer the disease of smokers? People know they are testing fate when they pick up those cigarettes. So, let them just suffer the consequences of their actions, right?
Well … first of all … NO ONE and I do mean NO ONE deserves to get cancer of any kind. It is a fact of life, I guess, that most all of us will be impacted in some way by cancer if we live long enough, but none of us deserve to get it.
Cancer is not a fun disease to treat. People are sick, sick, sick. And often lose their hair. And all of their energy. And their memory.
And, it is certainly not a cheap disease to treat. One … ONE chemo treatment that I had cost over $34,000 and that was after a $22,000 grant was applied. I had those treatments every three weeks for six or seven months. And, that was just the cost of the drug. It didn’t include the doctor, blood tests, or facility usage. Cancer can wipe a family out financially in no time.
But, back to the stigma associated with lung cancer. Did you know that 60 to 65% of all lung cancer survivors (because you become a survivor from the moment you are diagnosed) either have never smoked or are former smokers? In my case, I had broken the addiction five years previously. My cancer is one that both smokers and non-smokers get so there is no clear evidence that my smoking caused my cancer. It is also the same kind of cancer as my dad died from back in the 1970s.
I attended a LUNGevity HOPE Summit in Washington, DC last week. I was amazed at the 150 survivors at that event. One girl was only 20. Her late-stage lung cancer was found (finally) when she was 19. Another beauty was 24. She lost part of a lung to lung cancer. Heart-breaking. Neither girl smoked. Both were gorgeous. Both were physically fit. Both girls had such a difficult time convincing their doctors that there was something more than asthma going on that they didn’t have their cancer discovered until it had metastasized.
Even doctors have an errorenous image in their heads as to what a lung cancer patient looks like. So, while they are lollygagging along treating symptoms and never even entertaining the idea that there might be something more serious going on, the cancer cells are spreading all over the body.
I met men and women who bicycle hundreds of miles a weekend. Coaches. Vegetarians. Physically fit, well-nourished, non-smokers. Lots of them. Lung cancer survivors, one and all. I don’t know that an average age of attendees was calculated, but I would guess it was around 45, maybe less.
All of this is to say that your mind’s image of a lung cancer patient is probably wrong. He or she is probably as physically fit as you are. And, s/he is probably not as old as you imagined. And definitely likely does not have tobacco stained fingers that are still shakily raising that nasty cigarette up to be smoked. He or she might be your sister or your brother, your mom or your dad, or your best friend. Or you.
The stigma that just won’t go away STINKS. Worse than cigarettes and we all know how bad they stink. And, the stigma is far more deadly than cigarettes.
It is causing doctors to misdiagnose or delay diagnosis until the odds of survival have decreased to almost nothing. It is causing the general public to think it is fine to underfund lung cancer research. It is causing a lot of people to die deaths they do not deserve.
The news is BAD when we look at funding, awareness, and the number of people being diagnosed and dying from lung cancer. There really are not a l ot of optimistic things to say about those things.
But, in spite of the limited funding, our scientists and oncologists are making significant progress. This is an exciting time in the research field. They are on the brink of making some discoveries that could change some of those dire statistics.
At the HOPE Summit, we heard from some of the up and coming talents in the world of lung cancer research and they were inspiring. We have targeted therapy drugs coming. Immunotherapies. Perhaps even some chemotherapies that will be less toxic. I can’t imagine the inroads that would or could be made if only lung cancer was given a significant amount of funding like the other two major cancers get.
Tehre are a few groups out there working hard to raise awareness. As awareness is raised, perhaps more big corporations and well-known names will jump on the bandwagon. CVC has recently begun a campaign to raise money for lung cancer. It is the first corporation I know of to begin backing such a campaign. As awareness is raised, there will be more money for research. But, there will also be more lives saved because the image of the old smoker with lung cancer will be replaced by the young vital nonsmoker with lung cancer. People will begin to realize that they are not immune to it just because they never smoked. And then we will have real progress. It is a day I hope I live to see and I have developed a passion for doing what I can to help that day come sooner rather than later.
Won’t you help me?
I just came across another article that I want to share here. It was written by Jamie Gorenberg who wrote for “Desperate Housewives” after her mom, a person who quit smoking 40 years earlier, was diagnosed with lung cancer. I want to share it with anyone who happens to read my blog because she says, more eloquently than I, how it feels to have someone you love diagnosed with lung cancer.