It all started with a pain in my back. I was a mess. Every day, the pain grew and spread until it ran down my entire left leg and shot up into my chest. What I had hoped might be a simple pinched nerve turned out to be the result of a new metastasis in the muscle of my lower back, conveniently pressing gently up against the sciatic nerve like a feather made of barbed wire attached to a cattle prod.
To treat this nasty beast, the only practical solution was to zap it with radiation — something that I could barely wait to begin doing. By the time this was presented as an option, I was in such agony that surgery would have been appealing. Radiation, by comparison to virtually anything else, sounded like a relief. Continue reading Radiation and Me, A Love Story→
I suppose this is a good time for a disclaimer. My mother probably should not read this post. So, you got that Mom? Go ahead and read something about positivity.
Like I was saying, everybody has days like this sometimes. It isn’t unique to cancer patients either. There are days, every so often, when anyone might wake up and just feel like it’s too much. Like they can’t go on. Like they’d rather simply not try.
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→
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
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.
A Cancer Awareness Fundraising Run, Photo: Virgil Anderson
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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Christmas morning, the family was gathered in the living room making quick work of the presents under the tree. French toast was going into second servings and mine was fresh in the pan, filling my mouth with anticipation. Then my wife noticed the old woman on the sidewalk outside our window.
She had been pushing a shopping cart up the hill we live on. At first, it was hard to ascertain what she was up to; the cart was empty, she seemed to be well put together, her head was wrapped in a clean scarf and she carried a purse that looked barely used. But she was clearly struggling with the incline. Still in my pajamas, I slipped on a pair of moccasins and stepped out to see how — and what — she was doing. Continue reading A Christmas Story→
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 otherfancy 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!)
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.
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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→
Obviously, a certain theme has been on my mind recently. It is one, no doubt, that I will continue to explore.
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 otherfancy 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!)
