As a lung cancer patient, I certainly receive a fair amount of emotional support. Maybe some of it is more well-intentioned than helpful, maybe sometimes I don’t get what I really need, but I know it is there and I am ever-grateful for it. But as a patient, it is easy to find support in many ways, through friends and family, through community, through blogs and online forums and in-person support groups. Patients are obvious recipients of support, people who clearly need it for what we are going through. But there is another class of individual who carries an equal or higher burden and is consistently overlooked in the need for support: the caregiver. Continue reading Support Where It Is Due
Tag Archives: Education
Walk (or Run) for Cancer Research
The idea of creating or participating in events that raise awareness about lung cancer is very close to my heart. My mother started the Breathe Free Walk to support lung cancer research, and I was in South Carolina for its inaugural event in 2016. The turnout was amazing considering the lack of resources or experience in putting it together, and the 2017 walk was an even more successful fundraiser.
Part of raising awareness is giving voice to other patients and listening to other points of view. There are many types of lung cancer, and the patient experience can be wildly different. It is important to understand that many of our preconceived notions about these cancers paint a picture that often does not reflect the reality of these experiences.
One thing I have found very enlightening is in my exposure to patients with mesothelioma. This variety of lung cancer has long been associated with older patients who worked around asbestos, a material that has long been known to cause cancer. So discovering patients who contract this disease under the age of 50 conflicts with expectation. And yet, it is much more common than I had ever imagined.
Below is a guest post, contributed by a mesothelioma patient who shares my view about the importance of group events designed for both fundraising and awareness.
Charity Runs Help Raise Money, Awareness for Cancer
Guest author: Virgil Anderson, from mesothelioma.net
Charity runs and walks serve several purposes: they raise awareness and money for non-profit causes, bring communities together, and also promote fitness and wellness in those communities. From the smallest neighborhood runs to national organizations, charity runs for cancer are important for bringing awareness and raising funds for research and patient care. This is especially important for rare cancers, like mesothelioma, that get less attention and less funding. Here are some of the bigger runs, and a small run that is just as important.
The STOP CANCER Run/Walk
STOP CANCER is an important charity group because it focuses on raising money to help fund young researchers, those that are the most promising and who are working on innovative new treatments and preventions for all types of cancer. The annual run and walk takes place in October and raises hundreds of thousands of dollars every year and attract over 1,000 runners and walkers. It takes place in Van Nuys, California, with participants coming from all over the country to run, walk, and donate.
Relay for Life
One of the biggest cancer events in the country is the American Cancer Society’s Relay for Life. It is a nationwide team event with the purpose of raising funds for cancer research, patient care, and cancer education and prevention. What makes this event different from other fun runs and walks is that, depending on the particular event it lasts between 6 and 24 hours. Each team participating has someone on the course at all times, as a symbol that cancer never stops or sleeps. Thousands of events are coordinated for Relay for Life in communities across the U.S. and in other countries.
Race for the Cure
Another of the biggest cancer charity runs in the country is the Susan G. Komen Race for the Cure. Like the Relay for Life, this is a nationwide event with individual races occurring in many communities. And unlike that event it is an example of a charity run organized for a specific type of cancer. The Race for the Cure raises money for research, screening, treatments, and education for breast cancer. The races have contributed $2 billion to these efforts over the years.
Miles for Meso
Another important, but smaller running event is Miles for Meso, which highlights the rare asbestos-related cancer known as mesothelioma. It is organized by the Simmons Mesothelioma Foundation and is a 5K run or walk that raises money but also crucially raises awareness, a constant issue for rare diseases. The race began in Illinois but now is held in several locations in multiple states every year in the month of September. Money raised goes to the Mesothelioma Applied Research Foundation, which has eradicating mesothelioma as its main goal.
Fun runs and walks are not the most efficient way to raise money for a worthy cause, but there are many important reasons they are valuable. Building awareness is one of the most crucial of these reasons, especially for diseases that are not so common. They are also important for community building and getting people involved beyond simply writing a check to make a donation. And finally, these events are positive experiences for everyone, bringing people together for a good cause and to get people active and socializing. These events are to help cancer patients, but they are so much more than that.
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Critical Thinking and Cancer Headlines
I have a predilection for skepticism, especially with regard to hyperbolic medical claims about cancer treatment. Since my diagnosis, I have received many suggestions for things to try and I have been pointed to countless articles about amazing new treatments (and plenty of old ones). Each time, there is a flutter of hope, and I want very badly to see or hear a new piece of information that is going to change the cancer treatment paradigm forever. I think that most patients and caregivers feel that way. Yet, the vast majority of information on “new” or “revolutionary” treatments being passed around via the Internet seems to fall somewhere between misrepresentation and outright fabrication.
Over the past months, I have written a number of short articles on this subject for LungCancer.net — here are links to a few of them:
As longtime readers know, I try to encourage critical thinking and hope to present a good example of that approach to information on cancer treatment options. If you haven’t already, I encourage you to read and share my series of Wellness Warrior posts. (You can type the phrase in the search box for easy access.)
It takes a concerted effort, sometimes, to cut through the quagmire of nonsense out there. But if we all make that effort, together, to read beyond headlines before reacting and to vet our sources before we share, it will help to reshape the whole narrative around cancer as we know it.
If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on Twitter, Facebook, Tumbler and many other fancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)
Thank you!
New Scans, New Consultations, New Opportunities
If you are anxious to get an update on my Gilotrif / afatinib treatment, you can listen to me talk about it for approximately ten minutes on my podcast, but this is a fairly busy day for me and I’ve got something far more interesting started… It isn’t every day that a person is asked to participate in a research project that could have direct ramifications for the future of cancer care across the board, much less my family or my own body.
Research Matters
Because I get my treatment through a major research institution, of which my oncologist is a key player, I’m fortunate to be considered for (or at least kept up to date on) new trials and the latest in treatment options. But today, as my session with my oncologist was concluding, he brought in a representative of a research project to ask if I was willing to participate in their study. The immediate benefit for me is that I will get a complete genomic sequencing done on my tumor. That is pretty impressive.
Sharing Data Matters
The ORIEN Total Cancer Care Protocol requires relatively low patient commitment — they have access to my existing tissue samples, which hopefully will afford enough material for them to work with, and in less than five minutes I was in and out of a quick blood draw. Now I get to sit back and see if they find anything interesting. ORIEN stands for The Oncology Research Information Exchange Network. It is all about data sharing and matching patients to precision medicine for treatment. Of course, there is no knowing whether it will turn up anything new or unique for me to try in the near future. I am looking at this more as an opportunity to be a part of something greater, that will positively affect future generations.
The research part of this study, technically under the umbrella of clinical trials, is very ambitious. It isn’t expected to reach completion until after 2036, however; I’m hoping that I’ll be around to read about their conclusions.
If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on Twitter, Facebook, Tumbler and many other fancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)
Thank you!
Advocacy, Messaging, and Outreach
As a “Lung Cancer Advocate,” writing for multiple sites is a way to reach and presumably help more people. That is why I sometimes take a break from my blog and contribute to discussion sites like Quora or write for communities like LungCancer.net. I participate on sites like Patients Like Me, Health Unlocked, and Cancer Support Community. I also publish my audio and video blog, The Deep Breath, for subscribers on Patreon (there is a link for the RSS feed for the audio-only episodes). All in, it sometimes seems like I am spread a little thin.
But it is important to reach out in many ways, especially, it seems, when Lung Cancer Awareness Month still seems neglected in the wake of the Breast Cancer Awareness Month juggernaut that is Pink Ribbons and merchandising and organized events at every turn. Not to mention that there are more causes seeking awareness than there are months, and the limited color options for ribbons are often appropriated for multiple causes (sometimes even simultaneously). Continue reading Advocacy, Messaging, and Outreach
Dropping the Cancer Bomb
Dropping a bomb or sabotage — what does it feel like when you get the news of someone’s cancer second hand or by accident? That is what I have been pondering this afternoon since offhandedly mentioning my blog address in conversation earlier, without pausing to put its content in context. Since I don’t look like I am sick, a non-subtle reveal that I have lung cancer can be like a slap across the face. It’s a shock. One I deliver, I expect, far more often than I intend to.
I’ve been told on more than one occasion that it should not be my problem, that I should not feel obligated to hold somebody’s hand when I tell them about my “health condition,” and that I cannot be responsible for another person’s reaction to my disease. But I also consider the reality that most people know someone, quite often family or a close friend, who has struggled with a form of cancer. Depending on where you get your statistics the numbers vary slightly, but no matter which source you use the bottom line is that over a third of us develop some form of cancer. That means out of every ten people you know, three or four of them are likely to have cancer at some point in their life. It is no surprise, therefore, that on my street alone I know of seven patients — and I should stress that those are only the ones I know of within less than two blocks, not necessarily the absolute total for the street. Also, I’m not particularly social or friendly, in case that is relevant to knowing what neighbors are up to. In other words, there are probably more of us on this stretch already. Continue reading Dropping the Cancer Bomb
Some Thoughts on Death and Dying
The past few days have been interesting, in the way that might make a person both sad and angry, and hopefully also touch into a compassionate spot. After a lot of attention had been given to the hurricanes that battered our nation last month, highlighting both the devastation of nature and human resilience, it seemed that we were due a period of celebration. Instead, music icon, Tom Petty, died (prematurely reported, retracted, and ultimately, with some finality, reported again). And just before that, on the last night of a big music festival in Las Vegas, a so-called “lone wolf” gunman managed to use a stash of roughly 20 weapons (at least some of which were modified to be more deadly) to kill in the neighborhood of 60 innocent people, wounding hundreds of others. He did this from a hotel room in a very fancy casino across the street, using long-range rifles. It’s enough to get a person ruminating on mortality. As if living with stage 4 lung cancer wasn’t enough.
Before I get too self-indulgent, however, I should put my thoughts into perspective. Death doesn’t bother me so much; I do not hold onto a fear of dying and I cannot recall a time when I did. But I do have a deep and consistent anger about enabled murder, preventable deaths and injuries (both physical and psychological), and the lack of public will to address the underlying issues that allow such things to continue happening. And in that regard, I suppose, I do have a fear of getting shot. In almost 50 years, I’ve been lucky enough to have been directly threatened with a gun only once — but I’ve still been threatened with a gun. It is hard not to think about these things when a mass shooting happens just a few blocks away from where you had been lying poolside about a month earlier. Continue reading Some Thoughts on Death and Dying
Spoiler Alert: Side-Effects Show Up
It has been over two weeks since I began taking my new drug, afatinib. Over two weeks of feeling good, feeling like the chemo has been thoroughly flushed from my system even as I have diligently taken these new pills, feeling the best that I have in three years. I have been keeping a journal this time, chronicling how my body is responding each day, trying to pave the way for a better understanding of how to live with this new treatment. For the first week, anyway, it almost seemed like it was going to be too easy.
There are two weeks of video updates on my Patreon feed, talking about how great I feel and wondering how bad the side effects will be once they really kick in. I had been prepped by my oncologist that it was very likely that I would experience worse side effects than I had with the chemo I had been taking. This was based on how well I tolerated pemetrexed, the chemotherapy drug that had kept my cancer at bay for so long, but not so much on patients in general having a particularly tough time on afatinib. Which is not to suggest that I expected a walk in the proverbial park with this new drug.
Still, the first week was amazing. It was almost like I was taking nothing at all. Sure, there was some digestive stuff going on, but nothing outside of the realm of what I would have been used to in a previous life if I decided to live off of bean burritos for a few weeks. And I love a good burrito, so it would be worth it. But by day eight, I realized that the side-effects of the drug were presenting themselves quite visibly. Continue reading Spoiler Alert: Side-Effects Show Up
Interview With Radiation Therapist Turned Stage IV Lung Cancer Patient
I meet a lot of interesting people through my lung cancer support group. Most of them are on some form of chemotherapy. A few have tried immunotherapy. Some targeted drugs have been in the mix, along with surgery and radiation. The one commonality between them is their optimistic perseverance. But it isn’t rooted in blind optimism or faith — the whole point of the group is to share perspectives and experiences, gathering useful knowledge in the process. We all come with our own perspectives that inform our decisions and influence how we share, most of us having begun as (more or less surprised) patients that have evolved into advocates. Once in a while, a patient arrives with multiple perspectives built-in, hardwired to see her situation from both sides of the exam table.
And if I’m really lucky, she lets me interview her for my podcast:
If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on Twitter, Facebook, Tumbler and many other fancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)
Thank you!
Radon Gas, The Invisible Cause of Lung Cancer
I recently received a kind email about my blog from Jessica Morgan, who works with a radon testing and mitigation company based in the United Kingdom. Outside of smoking, radon gas exposure is one of the more common known factors for increasing the risk of lung cancer. In the message, she asked if I would be interested in an infographic her company had created called The Dangers of Radon and its Health Effects. According to their website, radon gas exposure is responsible for approximately 1,100 to 2,000 lung cancer deaths each year in the UK. Estimates for the US suggest between 15,000 and 22,000 deaths occur annually due to lung cancers related to radon gas exposure. Clearly, this is a serious and persistent issue.
Admittedly, I don’t know a whole lot about radon gas outside of having researched to see if it was a probable cause for my cancer diagnosis. The types of structures I have lived in and the locations of my previous homes indicated that there was no likely connection between my personal lung cancer and radon gas exposure. However, it is a subject that I think is highly relevant to the greater lung cancer discussion and is an essential part of understanding that lung cancer is not simply a smoker’s disease.
Because radon gas is not one of the areas of my own specialty, I asked Jessica for some information that I could share. The following information comes directly from PropertEco Ltd, and was supplied to me by request as educational material based on their expertise in the field.
Continue reading Radon Gas, The Invisible Cause of Lung Cancer