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
Just this morning, I heard about a 29-year old man who has been diagnosed with lung cancer who wants to raise awareness about the disease by having his state offer specialized “beat lung cancer” license tags. Stephen Huff is among a growing number of young adults who are being diagnosed with late-stage lung cancer. They never smoked. They were active. They were healthy. They’re young. And, yet, they are fighting the most deadly cancer there is.
It used to be that when you thought of lung cancer, your mind’s eye saw a wrinkled old man with a half-burned, long-ash cigarette hanging out of his mouth or an elderly woman holding a burning cigarette in her tobacco-stained fingers. You hear hacking and coughing and have a generally negative attitude about the whole person/disease/addiction.
The picture of what lung cancer looks and sounds like needs to change and it needs to change NOW. In today’s world, your mind would be just as accurate if it saw a virile, 20-something with a racing bib on. Or, a 40-year-old mom cheering on her son’s soccer team. Or, your next door neighbor who never smoked and was never around cigarette smoke. Or you.
Smoking is still the number one cause of lung cancer, but every year, more and more nonsmokers are being diagnosed with lung cancer. Especially for nonsmokers, the disease is usually not diagnosed until it is stage III or IV since no one, not the patient, not the doctor, suspects lung cancer as the cause of symptoms until every other possible option has been exhausted at least once.
And, as an aside, even IF the person diagnosed with cancer is or was addicted to tobacco, do they really deserve to die? In today’s world of acceptance (gays, transgenders, races, nationalities, religions, the list goes on and on), we do not, DO NOT, accept smokers. Whether conscious or not, we as a society are perfectly willing for those evil smokers to fight and die from lung cancer because somehow they deserve what they got. Individuals, companies, and government agencies all withhold their money from lung cancer research because, however wrong, they believe it is a cause that does not deserve support.
Stepping back off of that soapbox, I’ll climb onto another …
Mr. Huff, the young man recently diagnosed with stage IV nonsmall cell lung cancer, is asking his state legislators to offer lung cancer awareness license plates. The plates will cost taxpayers an additional $55. Half of those funds would be sent to his chosen charity to help pay for more research. At this point, he doesn’t think raising money will help save his own life, but he is adamant that more funding for research will save lives in the future.
I agree that it is crucial to get more funding in the hands of researchers. When I look at the tremendous progress that has been made already, despite every possible financial obstacle being thrown in the way, my mind can’t comprehend what scientists could accomplish with adequate funding. According to LUNGevity, only six percent of federal dollars devoted to cancer research goes to lung cancer research. How does this add up? The most deadly cancer gets the least amount of funding? Boy! Some stigmas die hard, do they not?
Let’s put the disparity in funding into hard, cold facts:
During his interview, Mr. Huff was asked why he was trying to get the state to issue license tags supporting lung cancer research. His response is one I hope we all will consider,
When I went to a consult about joining a clinical trial at UTSW back in 2013, I never, ever dreamed I would still be here, writing this blog!! Remember, I was only supposed to live 4 months. I had already outlived that prognosis by several months in July 2013.
When I first started the clinical trial in August 2013, the drug I received had only numbers for a name. I had no idea what kind of drug I was receiving. Immunotherapy was not a word I had ever heard.
As time went on, I participated in a number of surveys conducted by pharmaceutical companies. The companies were seeking feedback from cancer patients about upcoming advertisements. I began to connect the dots … and realized that the test drug I was receiving was the newest and latest therapy – immunotherapy.
Not everyone has the same results as I do. In fact, my medical oncologist has said that the biggest side effect of immunotherapy is disappointment. Because it is touted these days as the “cure-all,” patients whose cancer doesn’t respond positively suffer great disappointment. Sometimes, they also live with side effects they hadn’t bargained for, such as pneumonitis or impaired liver or kidney functions. No drug is completely safe and immunotherapy is no exception.
But, for me … and for many like me … immunotherapy is a true miracle drug. The drug I get is Opdivo, aka nivolumab. Another was introduced at about the same time, Keytruda (pembrolizumab). Both of these drugs received FDA approval for use against non-small-cell lung cancer like I have at about the same time. Both had already been approved for treatment of metastatic melanoma prior to being approved for lung cancer. Other immunotherapies have now been approved by the FDA for treatment of various cancers, including lung cancer. There are other drugs currently in trial. This field of research is exploding!!
That’s good news for those of us with cancer. Five years ago, immunotherapy wasn’t considered a viable option for treating cancer. Today, it is offering great hope to researchers, physicians, and most importantly, patients and their families and loved ones.
But, this is not really an advertisement for immunotherapy. I do encourage you to speak to your oncologist about the possibility of being treated with this miracle drug, though. It might not be the right treatment for you, but it just may be!
Opdivo is infused every other week. That’s a lot of doctor-going, especially for a person like me who avoided doctors like the plague prior to being diagnosed with lung cancer. Every visit required extensive blood tests. At first, I had to have CT scans every 6 weeks. As the years went by and my tumors remained stable, we were able to extend the amount of time between scans to three months. I had so many CT scans that I learned to drink barium without gagging. That’s too many scans!!
At first, no one knew what in the world I was talking about when I said I was getting immunotherapy. These days, I imagine most lung cancer patients, and possibly patients with other cancers, are familiar with the term, if not with how it works.
Opdivo gave me back my life. I was very sick when I underwent traditional chemotherapy. With Opdivo, I suffer a bit of fatigue on the day of the infusion and some minor tiredness on the day after the infusion, but that’s about all. (My thyroid no longer works properly, a common side effect, so I have to take levothyroxine every day … That means I constantly fight a weight problem, but that’s comparatively minor (and I do have to remind myself of that quite often!).)
When I reached treatment #75 or so, I began to look forward to a big centennial celebration!!! How many other patients are out there who can say they have gotten 75, much less 100, immunotherapy infusions? I wondered about that then. I still do wonder. How many of us are there who have basically been with the drug since inception?
When I finally reached treatment #90, it was a forgone conclusion that I soon would be joining the centennial club. And, I looked forward to it with relish. I’m not really quite sure why it seemed so important to me to get to that 100th treatment, but it was a goal I really wanted to reach.
Imagine my shock and distress when I went to see my oncologist prior to receiving my 99th treatment and learned that I was being pulled out of the trial and I would not be getting any more Opdivo! After over four years, a tumor in a lymph node in my neck finally outsmarted the nivolumab. The drug was no longer controlling it. My doctor could not and would not continue the treatment.
What????!!! I cried. I rarely ever cry. But, I cried.
Most normal individuals would have cried because their cancer was once more on the move. Not goal-oriented me. Oh no! I cried because I was just two treatments away from reaching Infusion #100. My heart was set on it. It had been a foregone conclusion that I was going to be celebrating #100. I was nearly frantic in trying to figure out how I could still get those two additional treatments (I never looked past Treatment #100. Treatment #101 held no awe for me … just that #100 was important.)
I’ve already blogged previously about this bump in the road. In short, after much consideration, I decided to have the growing tumor irradicated. I am slowly blogging about the process, if you’re interested in reading about the experience.
So, if I was pulled from the trial, a tumor was growing, and I went through a different course of treatment, you may be wondering how I managed to reach Infusion #100. Well, it is really simple!
My medical and radiation oncologists both agreed that I should resume Opdivo treatments after completing radiation. The drug has controlled the tumors in my lungs for about 4-1/2 years. The logic of the oncologists is that it would be foolish to abandon a protocol that I have responded to so well. The tumor that outsmarted the drug, the tumor I called Wayward Tumor, has presumably been killed with radiation so we only have to worry about the tumors in my lungs at this time.
I resumed Opdivo treatments at the end of September after a break of several months. My blood test results remain perfect. I continue to feel great after a treatment. We’re back in the saddle again!!!
Imagine my surprise when I arrived at the doctor to resume my Opdivo treatments and my oncologist, his nurse, and my nurse practitioner came in bearing a 100th Infusion gift. If I haven’t said it before (I have), I will say it now: I have the most awesome medical team ever!!!
Shine is perfect! The lady who designs the sculptures says this about Shine:
“Shine could be a congratulatory piece for a milestone reached, or a healing piece to show support and belief in someone. I wanted the form to be visually uplifting… a little reminder of personal goals, met. I embellished the surface with gold to suggest inner light and energy.”
Enough said! There’s absolutely nothing more I can add except, “Isn’t she beautiful?”
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.
I will never forget learning i had lung cancer or the reaction of my primary care doctor. She felt just horrible that she discovered i had stage IV lung cancer on my very first visit to see her. I have the complete opposite reaction. I praise God for her every day. I would be dead today if she had not noticed that tiny knot on my collarbone.
Dr. Casey held our hands tightly through those early days of battling the cancer. She requested that we come to report to her after every visit with the oncologist. I remember like yesterday sitting in her office and relaying what Dr Wilfong, my first oncologist, had told us. She asked if Robert and/or I needed sleeping pills or anti-depressants and was amazed when we said no. Not then, not ever have we felt the need for drugs to help us face the diagnosis.
From the beginning, we have accepted the diagnosis, gone for treatments, and continued on with life. Thankfully, my general good health has allowed us to live pretty normal lives most of the time.
I was at my oncologist’s office yesterday. With every treatment, i have blood tests, a doctor’s visit, and the immunotherapy infusion. I have had a cough since around Thanksgiving which is driving Robert and me crazy. It was preceded by an unexplained (despite a multitude of tests) fever. Anyway, Dr Gerber was wanting to know how significant the cough is and how affected by it I am.
I told him it didn’t prevent my playing agility all of last weekend. He wasn’t quite sure what i was talking about so i showed him the following videos.
My dogs and i love the sport of agility so much! I am sure it is apparent from the videos. How many Stage IV lung cancer patients are out running agility courses? I don’t know, but i am beyond thankful that i am able.
Additionally, the dogs and i meet my friend Linda Lelak nearly every day and walk from 2 to 3 miles. The dogs love it and it is good for us! I am grateful for Linda and her Louie. If not for meeting them every day, i probably wouldn’t make myself walk on a regular basis.
I meet my friend Anna every week for lunch and, if there’s anything worth watching, a movie. I love having friends and the time to get together! I spent nearly my whole life so involved with working that i didn’t take time for friends.
The whole purpose of this post is to point out that a cancer diagnosis doesn’t mean that you have to quit living. I know through a support network that i particpate on that too many people become captives to their disease and their fears of germs.
If i let it make me a prisoner, then i might as well just give up and let it take its course. I have cancer. Cancer doesn’t have me.
You have to look for your blessings where you can … and I know you guys will think I am weird, but this lung cancer made it possible for me to retire. I can’t even tell you how wonderful it is not to have to go to work any longer. I have had to work one or two jobs since I turned 20. I am loving every second of not having to do that any longer!
Another HUGE blessing is that the treatment I am on (clinical trial for immunotherapy drug) is wonderful. Here I am … Stage IV non-small-cell lung cancer patient … nearly 1-1/2 years after diagnosis … still doing fantastic!!! The tumors are still there, but they are just sitting in the same spot as they were when we discovered them. They haven’t grown or multiplied or spread. Hallelujah and Praise God!
The immunotherapy is the best thing since sliced bread. It doesn’t make you sick or tired and before I started getting it I was sick and tired of being sick and tired!! The hardest part of getting it is spending a long half day at the hospital getting an infusion every two weeks. Lucky me and lucky cancer patients everywhere … the company is or will soon be seeking FDA approval. From what I know, none of the patients who are participating at the clinic where I go has had terribly adverse side effects and I think everyone is doing quite well in the fight against their cancer.
I am so glad that I found UT Southwestern. Some people told me that they felt like it was a huge and cold institution that didn’t care about patients except as numbers in science experiments. Well, that’s far from true. The girls behind the desk know you, the aides who take you from place to place know you, the nurses, physician’s assistants, researchers, and doctors all know you as a person. I always feel like I am seeing friends when I go. Which is a good thing since treatments occur every two weeks.
My life is so full. Every single day is packed with things that I love to do. In the past, my days were full, but they were full of work-type activities. I worked at my 8-5 job and then I came home and took care of SchoolGrants, the business that God blessed me with since 1999. I let it go a couple of years ago and that was quite a liberating feeling! It still is. It was my passion for a long, long time but I burned myself completely out.
Once you receive a cancer diagnosis, I don’t think the fact that you have cancer (or had cancer if you are fortunate enough to beat it) ever leaves your mind. I never go through a day that I do not remember quite well that I have cancer. It impacts my thought processes. On the other hand, some days I can’t believe the diagnosis is correct. How can I be so sick when I’m so healthy??!!!
Which brings to mind more praises! Week after week, month after month, my blood tests come back perfect. We do thorough blood analyses before every single treatment and every time, my tests are perfect. My doctor is amazed. He said that less than 1% of cancer patients are as fortunate. It isn’t just my blood tests that come back perfect, so do my blood pressure, oxygen, and temperature readings! How can I not call myself lucky? LUCKY!! or, more appropriately, BLESSED. Totally.
Here’s another way I am blessed. Insurance. Oh my gosh. Fighting cancer is expensive. Ridiculously so. What do people who don’t have insurance do? I really don’t know. I’m glad I don’t have to find out.
I have been on some cancer sites lately that are sort of like support groups or something. I have never felt the need for a support group but I like to go to these online groups and offer support to those just learning they have cancer. I want them to know that a horrible diagnosis that scares the living daylights out of you may truly not be the end of the world at all.
Those people who get the diagnosis and decide right away that they’ll just go with palliative care distress me. No one thought I had a lot of time left but I was determined to make the best of what time I did have. My life has slowly evolved to something that it wasn’t when I was diagnosed. For instance, I do not participate in all of the same events, like agility training and competing, that I was consumed with prior to learning I was battling lung cancer. But my life is full. Every single minute of it! I am as happy as can be. Each day ends with me thinking that I needed more hours to get everything done that I wanted to get done that day. Amazing.
Those who just give up are missing out on so much. None of us have tomorrow promised to us, so we should all appreciate each and every hour that we are given. I just wish that those who choose not to fight their cancer would reconsider. At least I wish they would try to get into a test study so that the doctors can research the effects of more treatments. It might or might not help them but it surely might help someone else down the road. I’ve never been a hand-wringer. I don’t guess I understand those who are.
Well, I planned to post a lot of pictures here and discuss some of my recent activities, but I’m really beat. Today was treatment day and it was a long day. I’ll come back before too long and post some lovely pictures I’ve had the opportunity to capture over the last few weeks and months.
Until then, take care and thank God for another day!
I’ll leave you with two of my most favorite blessings:
|My lovely Cotton. She’s doing some birdwatching here. I’ll be posting pictures from our bird watching in the near future.|
|Barney. My heart and soul.|
Four years ago today, my little Sheltie made his way into this world. A little less than seven weeks later, he came home to live with Robert, Cotton, and me. He is my heart and soul!
Cotton was a big white fluffy puppy – just gorgeous. Don’t shoot me, but I personally don’t think Sheltie pups are some of the cutest around. They are a breed, in my own opinion, that are much more gorgeous after they become adults. All pups are cute, but Barney and other Shelties are not beautiful as puppies. In my opinion!
My mother came over shortly after I got Barney. By that time, his little looks had grown on me and I was thinking he was cuter than I did initially. His sweet, silly personality made you love and adore him and see a different puppy.
Mom, on the other hand, rounded the corner and saw him for the first time. She immediately declared that he was the ugliest little puppy she believed she’d ever seen. Poor little Barney! She was expecting a big fluffy ball of fur like Cotton, an American Eskimo Dog, was.
I saw a picture of Barney from his puppy days on Facebook this morning. I hope I can find it to post here because the poor boy was really gangly! The angle of the camera doesn’t help! Little Man looks like he’s all head and only a little bitty body! I just want to grab that little puppy up and give him a big hug now!!! A lot of my friends have new pups this year. Seeing them hasn’t really made me want a puppy all that badly. Seeing pictures of my own Barney Boy from a few years back, though, is really giving me puppy fever!!! And lots of big, big smiles!
Barney has been through so much with me. I had only had him for three weeks when we learned that our three grandkids, aged 10 months, 3 years, and 8 years at that time, were coming to live with us. CPS had removed them from their home and, at least at first, it seemed Robert and I were going to become parents again until the kids were full grown. I only had one child when I was young … getting three all of a sudden and under such circumstances was traumatic, to say the least. Poor little Barney didn’t get nearly as much attention as he would have under different conditions.
Well, that’s not entirely true. He got attention from the kids and from me … but it was different attention than I envisioned when I got him. The good news is that he loves kids, especially the three grandsons, unequivocally. I’m sure that growing up with the kids influenced that love greatly.
But we missed some early training opportunities that I see my friends offer to their young pups. I’m not sure it really stunted him much though. He’s well-behaved and a fine little agility dog.
The kids lived with us for 5-1/2 months before the judge allowed them to go back home. So much of my time and effort was focused on taking care of them that I feel like I missed Barney’s puppyhood. I barely remember it. Those months are a daze in so many ways!
As soon as the kids got to go back home, Barney and I threw ourselves into training. Little Man was fabulous. If you asked it of him, he gave it. He still does. What a dog!
We started training every chance we got. We went out to the DAWG (Dallas Agility Working Group) field twice a week and one time a week, Barney was in pre-agility and then beginner agility classes. We both love agility and spending the time together. Cotton was along for the DAWG training. She loves agility, too. Sometimes. When it suits her!
As soon as he turned 18 months, Barney started competing in several different agility venues: USDAA, ASCA, and NADAC. We were gone nearly every weekend and, no matter the venue, the little guy turned in a stunning performance. He qualified in nearly every run he ran. We had so much fun. So.Much.Fun! We added AKC to our list of venues because there were a few weekends when we couldn’t compete in our favored venues. Addicted to agility! That was me, for sure. And Barney loved every minute of it, too!
Then, in October 2012, the bottom fell out of my world. Forget the fact that I was competing in agility every weekend and going to class, by then, four times a week. Forget that I was happier and in better shape than I can remember being (other than being slightly overweight from having quit smoking and going through menopause without the benefits of hormone treatments). Cancer didn’t care.
Barney, Cotton and I continued to go to class and trials while I underwent all sorts of tests and we waited to hear the final diagnosis. We even continued to go to class and trials after the word came that I had Stage IV lung cancer. But, once I started chemo, all bets were off.
I didn’t have the stamina to go to class at night after working all day even when I wasn’t sick, deathly sick, from the chemo treatments. If I wasn’t nauseous, I was still so exhausted that asking my legs to carry me very short distances (like from the 15 feet or so from the couch to the refrigerator) was an accomplishment. As badly as I wanted to keep playing, it was physically and mentally impossible.
Well, nearly. Ed Scharringhausen holds Run As One NADAC agility trials in this area once a month except during the hottest months of the summer. He and his other half, Cathy, are as supportive of me and the challenges I face with this disease as any two people I know have been. Despite not going to class, Barney and I have managed to go, at least for a few hours, to quite a few Run as One trials since I was diagnosed with cancer. And little Barney just keeps on keeping on! We’ve reached a point on one of the events, Chances, where the dog has to work a great distance from you, that we are not going to qualify without more training. Otherwise, though, Barney is at least as likely to earn a qualifying score as not. He gives his all each and every time we step to the line.
But, Barney is more, so much more, than just my little agility teammate. I’ve posted this picture a time or two before, but in my mind’s eye, it is how I see my little boy much of the time. I was so sick after one of my first chemo treatments. My boy was right there with me … he has never before or since been so willing to stay with me (on me) for so long as he was during the time that I was the absolute sickest … such a comforter!!!
I dearly love my Cotton Girl. One of these days, I’ll give her a post! To go on and on about Barney doesn’t diminish how much I adore Cotton, but she’s a totally different dog than Barney. Barney is my caregiver and my little shadow. My sensitive, loving little man. I am, every single solitary day, so very grateful that Mr. Barney was brought into this world on February 7, 2010 and that he came home with me a few weeks later!
Happy birthday, Little Man!!! I hope we get to share many, many, MANY more together!!!!
Wow! 2014!! Where have the years gone? They speed by quicker and quicker! It is already the middle of January and it seems like it was only yesterday that we celebrated Christmas!
The biggest news for 2014 (so far) is that, as of 1/1/2014, I am retired!!! I never, ever thought I would see the day! I mentioned in an earlier post that there were some advantages to having stage IV lung cancer. I know most of you think I’m crazy (maybe so!!!), but if I didn’t have cancer, I would still be working. For quite a few more years… Instead, I am getting to enjoy me time now while I can still enjoy it. The downside is that we have to go to treatments every two weeks, but the upside is that the treatment is working so I can enjoy being retired! 🙂
I am not sure that it has really sunk in that I don’t have to go to work on this coming Monday. Vacation isn’t going to end in another week! What a liberating feeling. Especially after being pretty miserable for the last few years at my job.
My challenge is going to be keeping myself from getting completely lazy. There have been a few days when I woke up and decided to just go back to sleep since I didn’t have anything I really wanted to do. Don’t get me wrong. There is PLENTY to do around here!! Plenty! It’s a matter of “wanna” … and I haven’t had the wanna to get into my closet or the study and tackle the mess that each place holds. Maybe next week.
Before I retired, I envisioned myself spending lots of hours playing with my dogs – mostly hiking and having a great time enjoying the outdoors. Maybe it will still happen. It just so happens that last week was mostly really cold and sort of dreary … my mood reflected the weather, for sure.
I thought I would be out and about with my camera – taking pictures of flowers, birds, insects, squirrels … whatever I could find basically. Again, I hope it was the weather that stymied those plans.
I haven’t had the luxury of not working since I was about 20 years old. Lots of my life was spent working full time, much of the time working full-time as an employee and running my own business. For several years, I added full-time student to the mix … those were interesting times!!! Thinking back on them STILL makes me tired 🙂 Always, there was wife and mom in the equation … and I always tried to be supermom and superwife … Yeah, like I said, looking back on those days makes me tired! And grateful they are in the past!
I guess it will take a little while to decide how to approach retirement. The idea of not having to do anything (except go to chemo every 2 weeks) is almost overwhelming. But, in a mostly good way!
Robert and I have talked seriously about buying an RV and traveling around our great country. Since I’ve always had to work, we haven’t done much traveling. I know a lot of people work and still manage to travel, but I always found that trips were tiring and I chose to use my vacation time to rest and recuperate. So, now that work is no longer an issue, we have really considered purchasing a home on wheels and beginning to explore the United States. Robert wants to be in Arizona when the professional baseball teams are in spring training. And, we (mostly me) have thought it might be fun to travel all around to different agility trials.
Well, we went to a big RV show in Fort Worth this week. I had looked forward to that show for months. I left so confused. I thought I wanted an RV that you drive – so the dogs would have more room as we traveled from place to place. Plus, I thought it would be easier to drive a vehicle that is all one piece!
We looked at so many recreational vehicles it would make your head spin (and your legs feel like they were about to drop off). And, I was left wondering if maybe a fifth wheel RV wouldn’t be the better choice. Huh? Where did that come from?! I hadn’t entertained that thought AT ALL until walking around the show.
Then there is that part of me that wonders if we want an RV at all. They are expensive in every way: to purchase, to drive, to park, and to store. Some of the RV parks that I looked at cost more per night to use than a La Quinta or similar hotel. Maybe we should just buy a nice SUV and drive that across the country and stay at hotels and cabins, etc. along the way. It would be far more economical.
Or shoot. Maybe we should just purchase a lakehouse and forget about traveling. A home on the lake with property where the dogs can run and play sounds pretty relaxing. I’ve gone this long without really seeing America. Is it really all that important that I start now?
So, there you have it! Conundrum!
But, as I sit and reflect on all of the questions and decisions that await us, I am amazed again that I am here and that these questions and decisions are even there to be made! I say it pretty often and it is because I truly believe it – I am so, so, so very lucky. And blessed. A lot of lung cancer patients WISH they could be more concerned with these kinds of questions and a whole lot less concerned with how the chemo makes them feel and what can be done to stop their tumors from spreading and slowly taking over their bodies and killing them.
I remain fully aware that the day may come when the drug I am on quits working. And my tumors will no longer remain dormant. At any time, the cancer may decide it has sat for long enough without movement and spread through my body in weeks or months. Life is not certain. But, the truth is, life is not certain for any of us. Not at all. And each of us should probably strive to keep that thought in the forefront of our minds. It might help us quit sweating the small stuff.
If you had told me in October 2012 that I would still be here and feeling pretty darn good in August 2013, I would have thought you were very optimistic. Facts back up my pessimism. Less than 50% of all Stage 4 lung cancer patients live for one year after diagnosis. I realize I haven’t actually made it a year yet … I have to make it to the end of October for that … but God willing, that is going to happen.
This picture was taken at UT Southwestern where I was receiving a test drug as part of the research study I am in. It marks the last time I will have an infusion through a vein in my arm (or hand, as the case may be). Tomorrow, I go in for a port. No food or water after midnight. Arrive at St Paul Hospital by 7. St. Paul is an hour away! We’ll be getting up and getting with it early!!
As you can tell by the picture, I don’t look particularly sick except for the tubes coming out of my arm. It is because I am NOT very sick. My blood tests continue to be nearly perfect. My organs are holding up beautifully. I haven’t lost weight (not necessarily a good thing in my mind but most people find that a positive). Despite receiving chemo for six treatments of a 3-chemical cocktail and six more of one chemical, I didn’t lose my hair. It did get really ugly though so I had just had it all cut off not too long before the picture above was taken.
Once you receive a cancer diagnosis, I don’t think it can ever be forgotten or even pushed very far back from the forefront of thoughts. The fact that I have stage 4 lung cancer – the deadliest of all cancers – with only 15% of all those diagnosed, including those diagnosed at an early stage – living for five years – controls nearly everything I do. For instance, vegetables are not my favorite dish but I try hard to eat dark green vegetables every chance I get (realizing, of course, that we eat out most every meal). When we eat at a buffet, I will frequently choose to eat fish. I drink vegetable and/or tomato juice by the gallons. I try to stay away from carbonated drinks and, despite craving on occasion a mixed drink, I have refrained from imbibing. All in the interest of a healthier lifestyle.
Likewise, you will find me walking my dogs every morning. They are such a blessing. If I didn’t have them, I know I would not make myself get up and out. Not only do we walk, we also go to agility practice most Saturday mornings – even now in the hot August Texas summer heat. Last week, between the two dogs, I ran 6 or 8 complete courses. I have to sit down between runs and catch my breath, but I can still run! Thank you, Jesus!!! I am blessed.
For the first few months, I refused to buy anything for myself. I didn’t want to spend any money on someone who was short for this earth. I finally broke down and purchased several pairs of slacks and lots of little summer tops (admittedly, the tops have all come from Walmart or Sam’s, but still!). I’ve signed up for magazines that have subscriptions that run for a year. I’ve signed up for dog trials and photography classes.
On the other hand, I have thoroughly enjoyed listening for hours to the Gaither Vocal Band. Some of their videos make you happy; make you want to clap and sing along with them. I looked into going to a concert of theirs. There is a 3-day event in Tennessee over Memorial Day 2014 that sounds like a ton of fun. Tickets would amount to several hundred dollars. I have chosen not to invest despite the fact that really good seats are still available.
I’d really love to have a new car, too. But, I don’t want to purchase something long term that Robert might be stuck paying for without me here to help.
So, short term, there are not huge changes in my life. I can’t go to as many agility practices or trials because of stamina, desire not to spend excessive amounts of money, and a growing lack of interest. But, I have developed new interests that take a little less stamina (maybe), such as photography. Why can’t I ever find a cheap hobby??!!
I have more to say, but it is getting late and I have to get moving early in the morning. I’ll try to revisit here a whole lot sooner than I have been so far!