Here We Go Again

It has been a rough couple of weeks in the Chidester household. It began with the surprising news of multiple brain metastases. I think I definitely have been in a bit of denial after nearly six years of fairy consistent response to treatment. Quality of life certainly has had its ups and downs depending on the treatment, but overall I must say that I have led a pretty active and fulfilling life since my diagnosis of stage IV disease in 2005.

This particular course of treatment has its share of physical challenges, but I have been quite surprised with the emotional impact. It feels as if I have been transported right back to the beginning of this journey with those same old questions and feelings emerging. They are things I have not thought about for years like:

“Why me?’
“What did I ever do to deserve this?”
“How did I get lung cancer anyway?”

Also disturbing to me is that I thought I was well trained to no long look and live in the future and to be very present in the moment. Now suddenly I find myself tearing up when I see older couples enjoying each others company, knowing I will not be able to be there with my husband. I waste countless amounts of time and energy wondering if I will get a chance to meet my new grand baby in November. My focus has suddenly turned to worrying about the future. What in the world happened to all that re-programing to be fully present in the moment and to accept change as a natural process of life?

I think the most surprising of all to me is the very strong desire to just totally shut down and lock everything and everyone out. It is like the pull of a powerful magnet. It is so hard to keep communication open; to give more than just yes/no responses, to be interested in anything except the comfort of my bed. Don’t get me wrong, I know that I am not in any immediate danger of dying physically, but obviously I have been impacted by this experience much more than I thought possible.

Thankfully, I have a wonderful family who have insisted that I resist the pull of that magnet of isolation and stay involved. My lovely daughter left her family to fend for themselves and spend some time taking care of me. My sister-in-law has split the duty with my daughter and resumed her prior role as “chef” to the picky cancer patient. My husband is a steady rock that keeps me upright. I think the take home here is that it is difficult to even realize when we need to ask for help. I am so glad that my family has the willingness and ability see the need for action. Although I think that maintaining involvement in life is a choice, there is a strong pull toward the path of least resistance and one person alone may not be strong enough to overcome that pull.

It’s Not The News, It’s What You Do With It

As a general rule, if you have advanced or late stage lung cancer, there are going to be instances when you receive news about disease progression or treatment failure that will challenge your spirit and your desire to move forward. Unfortunately for me, that happened quite unexpectedly last week. I had gotten results from a regular CT scan that showed my current treatment regimen was holding everything stable which is code for “really good news” and at that time I asked for an MRI of the brain. A brain MRI is the best why to find metastasis but is not a regular part of surveillance for someone not experiencing symptoms. You could have knocked my over with a puff of air when my oncologist called a couple of days later with the news of multiple brain metastases.

Even though I know the chances/probabilities of mets to any part of my body happening at any time are quite good, I certainly was taken by surprise. It is so easy to slip back into a routine and pretend that your life is a just like it use to be when symptoms and “bad news” have moved to the back of your experiences and thoughts. All this changes instantly within the first few sentences from the doctor. For me, I guess the natural protection is a trance- like state…..hearing, but not really able to relate exactly what was said. I then move into the “I wonder if it was really my brain they are looking at?” and then of course comes the awful reality that it is true. Finally, the painful acceptance that a new treatment plan along with more limitations on my lifestyle will be forth coming. I have to say that I did my best to bargain for no treatment hoping for just a bit more time to live in my small state of denial, but my doctors vetoed my suggestion, reminding me that the symptoms of brain metastasis are much worse than the treatment.

It did finally dawned on me that it really is not the bad news that has such potential for everlasting devastation; it is how you decided to deal with the news that can cause hopelessness, helplessness, frustration, depression and a whole host of other bad things. The decisions made after receiving bad news really determine the course of events and thus how we live our lives. We are all entitled to be blown away for a few days, but we need to get back into life and gear up for the next challenge….. I have lots to get done and I do not want to waste one minute filled with doubt and worry. I am off to lie on a beach for a few days before beginning twenty treatments of whole brain radiation. I am sure a bit of sunshine will help re-energize the body and soul for what is coming.

Wish me luck, you all know I cannot afford to lose more brain function!

It’s About Lung Cancer, Not Smoking!

I was looking forward to attending a lecture by a local doctor on lung cancer yesterday. It is not often that the subject is addressed by our St. Louis area hospitals so I am always anxious to support the activity and perhaps gain some knowledge.

Unfortunately, about ten minutes into this presentation, I had to bolt because I was feeling so badly for those in the audience. The doctor spent these opening minutes talking about the evils of cigarette smoking. It was much more than just a “smoking causes lung cancer” comment. It was not an appropriate comment such as, “treatment and prognosis improves in those who quite smoking” or “if you need help quitting, you can receive help at…………”. It was, a history on smoking as the “only “cause of lung cancer.

This is totally inappropriate for a presentation aimed at those who come for information and support because of a diagnosis of lung cancer. Would any other group of cancer patients receive ten minutes of being berated or being made to feel ashamed and to blame for their unfortunate disease? All lectures to patients and families facing a lung cancer diagnosis SHOULD BE ABOUT LUNG CANCER……NOT ABOUT SMOKING. The one thing I have found after several years of trying to educate the public about lung cancer is the single that fact everyone knows is, “smoking causes lung cancer”. I venture to say that no one in the audience was unclear about the risks of smoking and presentations such as this, drive patients further into isolation and prevent them from asking for help and seeking to learn more about their disease. This goes beyond “singing to the choir” and becomes tasteless and hurtful.

The facts that no one seems to know or care about are that deaths among never-smokers from lung cancer create the sixth largest cancer killer every year (about 20,000 people). A full 50% of those diagnosed today quit smoking decades ago and 10% are never-smokers. That leaves 40% that are smoking at the time of diagnosis and I truly believe that not one person in any of these groups would chose to go to a seminar to get chastised about behavior when they sought information to help them become active participants in the battle of their life.

We can never hope to change the face of lung cancer and encourage that all patients are treated with dignity and respect until our medical professionals are able to separate lung cancer from smoking issues. There are numerous organizations that claim to advance treatment and cure for lung cancer but actually pour all funding into facts about smoking. Two of these organizations are the American Cancer Society and The American Lung Association. This is the place to find information on all aspects of cigarettes….not in a lecture to lung cancer patients. The fact is that no one deserves lung cancer and until we can separate lung cancer from cigarette smoking, the stigma of lung cancer as a self-inflicted disease, will prevent any improvement in dismal survival rates. The public will continue to blame patients for their disease. It is way beyond time to change this and accept the fact that if you have lungs you can get lung cancer.

Dealing with Survivor Guilt

A young mother of an eight year-old succumbs to lung cancer after less than a year. A twenty-one year old college student manages to live only a few weeks after diagnosis with lung cancer. A husband/father and athlete lives less than ninety days after his diagnosis. A gentleman just beginning his long awaited retirement passes away after a hard fought three-year struggle with lung cancer.

After over five years of battling this disease, my list of those who have fought bravely and who should have experienced so much more life ahead of them goes on and on. Their deaths weigh heavily on my shoulders as I wonder why I am still here. I have chosen my path that intertwines with so many lost lives because I feel compelled to try and change the dynamics and perception of this disease. But with that comes the every present question, “Why am I still here, when so many younger, vital and beautiful souls are not?”

Intellectually, one could attribute my relative longevity to an unusually good response to treatments and a slower growing, less aggressive cancer…but when you look beyond that, there continues to be the question remaining ….why me? With so little funding and attention directed to research to answer questions, it may be a long time before we are able to understand these differences scientifically.

The way that I have come to some livable acceptance of this is I treasure the short time that I have had the pleasure to know each of those individuals who we have lost. What a gift they have each given me through sharing their struggles, courage and the amazing grace and wisdom in which they manage this difficult journey. Those families that have lost a loved one before I had the chance to meet them have shared amazing facts about how that special person changed their lives forever and for the better. Those stories are a source of joy and strength for me and help me to turn that question about surviving into motivation for continuing to work toward all the things that our lung cancer community desperately need.

I am sometimes overwhelmed in trying to meet the very basic needs for knowledge that patients have about their disease. I also am saddened that many feel so isolated and helpless that they seek no information or support and often if they do reach out there is no one to help. There is much to do and those who have gone before are truly the inspiration for those of us who continue on. The question of “why me” becomes less about guilt and more about responsibility. My own concerns become less important when I observe the dedication and determination of those families continuing to bring awareness about lung cancer after making the ultimate sacrifice of losing a loved one.

Lowering the Bar

What would you do if you found out you had an incurable, terminal disease? How devastating it is to be healthy one day and very ill, facing death, the next. How does anyone get their head around that? Is there right way to do this? Is there anyway to deal with this?

I always knew I would be one of those folks whose picture ended up on the Smuckers’ Jar with Willard Scott assigning their good habits as the reason for their longevity. I took quizzes I found on the internet that asked me to input information about my diet and lifestyle and my score showed that I would live to somewhere in the neighborhood of 103 to 105. I felt I was doing all the right things to avoid any life threatening disease and really believed that I had complete control over my destiny. I was so certain of my physical fitness and annoyingly smug about my ability to outrun and out exercise all of my younger friends that I thought a long healthy life was guaranteed.

In 2005 my life changed dramatically with the diagnosis of stage IV lung cancer. There is no cure, my doctor told me, but things can be done to keep you comfortable and get you out of pain. How in the world could this be? My doctor drew a bell curve when he talked about surviving the disease. It showed most patients diagnosed at stage IV succumbing to the disease at about nine months (the widest part of the curve) and the samll end at the right side showing those who live to the end of the first year was narrowed to about 5%.

It was time to say goodbye to the old way of living in the future, being defined by my job, measuring my self-worth by my healthy look and resilient body. I felt totally betrayed and began in earnest the process of dying. Everyday was spent in bed with physical and emotional pain. I would be leaving my family way too soon with no true sense of what or who I was without the trappings of a good job or even the ability to take care of my own basic needs.

I have talked with many people faced with stage IV lung cancer and have found that there are as many ways to deal with these traumatic changes as there are people. Giving a new twist to the concept of having a “good day” became an important tool to me for beginning to live within these new parameters. I found that lowering the bar for what defines a good day has allowed me to find joy and peace in the scope of my life now.

Doing anything that resembles a normal life constitutes a mark high on the good day yardstick but sometimes a good day involves a day when I am snoozing in bed without much discomfort. Other days, I am blessed to be out and about doing a little shopping, able to do some cooking or cleaning. Those are activities I certainly never put into the good day category before. I guess what it really comes down to is I appreciate everything and every minute that I am able to be here, not in pain, and just being me. Gone are the trappings of self-worth being tied to what I produce. I have been lucky within the last five years to actually have times when the bar for a good day is almost the same as it was prior to my diagnosis, but also many times when I lower the bar to the very basics of breathing. I am truly ok with this and it has helped me move from the process of dying to be involved in living every single moment. My hope is for each of us to be flexible enough to adjust our self-set standard for measuring all aspects of success. No matter what your circumstances, things change…..embrace the changes. That’s life.

PriceWaterhouse Coopers Selects Lung Cancer Connection as their charity for the month of January

Lung Cancer Connection

Lung cancer will take approximately 160,000 lives in 2011 — more than breast, colon and prostate cancers combined. Although smoking is the primary risk factor for lung cancer, many of those affected by lung cancer have never smoked, nor lived with smokers. The survival rate for lung cancer is only 15% five years after diagnosis, mostly due to a lack of effective diagnostic screening. Because most lung cancer isn’t detected until it is quite advanced, most patients will die within one year from diagnosis.

Despite these alarming statistics, Lung Cancer Connection is the only not-for-profit organization in St. Louis dedicated to raising awareness about lung cancer, as well as providing support for those affected and raising research dollars to fight this deadly disease. Less research money is spent on lung cancer each year in the U.S. than on other cancers, and Lung Cancer Connection is working with other advocacy organizations to change that.

Lung Cancer Connection, founded by two lung cancer survivors, is a network of lung cancer survivors, family, friends and medical professionals dedicated to providing information, education, resources and hope to those affected by this disease. Its mission is to raise awareness, increase patient and family support, and increase funding. Lung Cancer Connection strives for better treatments and someday, a cure. It’s working to reduce the stigma associated with this disease so that all affected are treated with dignity and respect. The money raised by Lung Cancer Connection stays in the St. Louis region supporting local patients, families and the medical community in their fight against this terrible disease.

Lung Cancer Connection was nominated by Advisory Manager Kathy Rush, who is active with the organization. Kathy’s 21-year-old niece lost her battle with lung cancer nearly four years ago, and Kathy became involved with this organization as a result of her niece’s illness. Kathy and her family are helping to advocate for greater awareness about lung cancer and more research in honor of her niece, whose brave and courageous battle against this disease has inspired them to help others.

For more information about lung cancer or the Lung Cancer Connection, check out http://www.lungcancerconnectioninc.org. Checks to support this organization should be made payable to Lung Cancer Connection.

The Last Christmas

As most of you know, I was diagnosed with stage IV lung cancer in July of 2005. Every year since then, I comment to my husband about the possibility of it being my last Christmas. Now that we are more comfortable talking about the reality of living with a terminal disease, it has become a bit of a joke. We are able to use the “last” birthday,” last” anniversary and of course the “last” Christmas as an excuse to be good to ourselves, our family and friends. It was very difficult initially to look at each life event as if it could be the last, but to be honest, I wish I could have had the capacity to do that earlier in my life.

I had a CT scan last week and the young lady doing the scan began asking me questions about how my thoughts about life had changed since my diagnosis. I found out that she had dodged a big bullet with an early diagnosis/treatment of melanoma. Most people that I interact with during my medical procedures are nice but it is usually pretty obvious that they are more in the “I am glad it is you not me mode” and I found her questions quite touching. I am sure she will treasure each and every Christmas. Her remarks made me ponder the wisdom of embracing changes.

The truth is, that while it is difficult to walk the “you have a terminal disease” road, I cannot help but think of all of those wonderful folks I have met over the last five years that did not have the luxury of any time at all. My first phone buddy was just my age with a son in college and a daughter getting married in a couple of months. She was so worried about not having her beautiful hair for the wedding. She lived only a short time and passed away before the wedding. My next phone buddy was ten years younger than me. She had an eight old daughter and she was devastated about the possibility of leaving her without a mom. She wondered who would make sure her hair was done and her clothes matched. It was truly heartbreaking when she passed away in just a few months. My list of people with no more Christmases goes on and on, just as Christmas does.

I know I have so much to be grateful for and I have to note that although no one knows when it is the “last” Christmas, we know each Christmas will bring about changes. No one can stop those changes so we need to embrace the moments and be happy for the time we share together. As I look back on pictures taken on different occasions since my diagnosis one thing stands out…..life goes on. Daughters get married, dads learn to do hair, mothers and husbands remember and pay tribute to their loved ones in different ways. In that vein, I hope and pray that when it truly is my last Christmas, that those who love me will honor me by having no regrets, doing great things and being happy. That will be the best Christmas gift of all.

Merry Christmas everyone! Make it a great one.

American Lung Association Position on Lung Cancer Screening

A few months ago, I was asked to serve as a patient representative on the Thoracic Steering committee for SSM Hospital system. The goals of the committee are to improve care for the many lung cancer patients within the community and I was really excited to be invited to join this important cause. The committee includes some dedicated thoracic surgeons, medical oncologists, pulmonologist, nurses and administrators who truly want to make a difference in the way that lung cancer patients are treated in our community.

During the last meeting in December, there was a lot of excitement about the release of information regarding the National Lung Cancer Screening Trial (NLST), which has shown a 20% reduction in lung cancer deaths through use of CT scans for early detection in those who are known to be at high risk for the disease. The focus of these dedicated professionals in this particular meeting was to move toward insurance coverage of this important live saving procedure. I was asked to contact the American Lung Association to garner support for this movement. The ALA has recently begun a program to include lung cancer within its scope of interest so I thought it might be a great opportunity for them to show support for lung cancer patients.

I was extremely disappointed to read their position with regard to lung cancer screening.

Washington, D.C. (November 4, 2010)—
The American Lung Association is encouraged by the preliminary results of the National Lung Screening Trial released publicly by the National Cancer Institute today, and eagerly awaits the publication of the full article. This is the first optimally designed clinical trial to show that lung cancer screening could reduce mortality (deaths) from lung cancer among a high-risk population. This long-awaited study has potentially wide-ranging impact in the fight against the leading cancer killer in America.

“The American Lung Association has awaited this NCI study, and although the findings need further examination, the potential of a 20 percent reduction in lung cancer mortality, due to lung cancer screening is a finding of immense importance,” said Dr. Norman Edelman, Chief Medical Officer of the American Lung Association.

It is important to stress that the best method for reducing lung cancer risk is to reduce smoking, the leading cause of the disease. The best way to avoid lung cancer is to never start smoking, and if you do smoke, to quit as soon as possible. The most effective tools in fighting tobacco use are to provide tobacco cessation support, increase taxes on tobacco products, support smokefree air laws and eliminate marketing of tobacco products to children, since most smokers start before the age of 18. This recommendation echoes that of Harold Varmus, M.D., Director of the National Cancer Institute, which released this report.

This position is astonishingly cold and uncaring in its disregard for the thousands of lung cancer patients that could be saved through screening. It is especially disturbing coming from an organization that presents themselves as lung cancer advocates. Think of all the moms, dads, sisters, brothers and even sons and daughters that could be saved. This position not only allows unnecessary deaths it continues to add to the discrimination and stigmatization of patients with lung cancer.

There are a couple of other points that need to be considered when one blames the patient instead of choosing early diagnosis and cure. The first is that initial and on going scanning would be an excellent opportunity for medical intervention to address smoking cessation. This has been shown to be an effective time to intervene by local lung cancer scanning studies that report great interest among patients to begin smoking cessation programs in conjunction with lung cancer screening.

The second is the high cost of treating late stage lung cancer. When one tallies the financial burden of palliative care during the ten or eleven months of the average life span of a stage IV lung cancer patient, the costs are tremendous. Chemotherapy to reduce pain and improve the quality of life can cost over $20,000 per treatment and is usually given every three weeks. If the treatment lasts for the standard 6 cycles that would be $120,000. This would not include the costs of any radiation for pain control or treatment for effects of chemo. The reimbursement for stage I lung cancer surgery is around $85,000. Aside from the dollar cost, at the end of the treatment for stage I lung cancer, you have a functioning member of society. At the end of stage lV treatment is only death. There is also a huge emotional loss that cannot be measured in dollars but is obviously not important to the American Lung Association.

As a lung cancer patient who would not have qualified as “high risk” under the guidelines established by the NLST, I do believe that not supporting screening is an absolute slap in the face to all lung cancer patients and their families. It clearly indicates that lung cancer patients are not worthy or deserving of effective treatment. I have been through nine different treatment regimens and have experienced much discrimination and many hurtful comments, but the position taken by the American Lung Association is by far one of the most disappointing and discouraging things I have faced.

Lets do what we can to put a face to lung cancer. We are just people with a bad disease……No one deserves lung cancer and every lung cancer patient needs to be treated with respect, dignity and has the right to early screening that has been shown scientifically to be effective.

Myrtle

Lung Cancer Connection Sponsors GRACE

Our mission is one based in information and education. Dr. West and GRACE provide a unique and wonderful forum for everyone to have access to the most current information about the disease. He and the GRACE faculty even take the time to answer individual questions about treatments, side effects and well just about anything related to lung cancer. As a patient I know the value of having such information at my fingertips and I am so proud for Lung Cancer Connection to be a part of this valuable resource.

Myrtle

Click Here to see our logo on Grace

Lung Cancer Advocates Connect for a Cure

Thanks to all the folks who made our wonderful day possible. We are so excited about all the ways we can improve the experience of those affected by lung cancer in our community.

Press Release — RunWalk NLST 2010

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