Category Archives: Health and Wellness

New Scans, New Consultations, New Opportunities

Cancer, Health and Wellness, , , ,

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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Advocacy, Messaging, and Outreach

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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 →

Looking Fine Vs Feeling Fine, the Deception of Image

Cancer, Health and Wellness, , ,

https://lungcancer.net/living/pressure-of-looking-fine/

https://lungcancer.net/living/feeling-relatively-fine/

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 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!

Dropping the Cancer Bomb

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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

Cancer, Fear, Politics, Reason, , , , , , ,

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

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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 →

Sealing the Roof

Cancer, Health and Wellness, , , , , ,

Some time back, I wrote about the importance of clearing the roof of debris. Like many things I write, it was intended as a metaphor, illustrated by happenstance with imagery of me clearing actual debris off my actual roof.  Because sometimes, in spite of life’s special curve balls, we have to muster the energy and resolve to do stuff that simply needs to be done. And in so doing, perhaps we can find joy or a sense of gratification, and maybe even extend that process to a more metaphysical level, using it as a tool for release or letting go, or at the very least, we can check one more thing off the ever-growing list and move along to the next item.

Which, in this case, is a roof sealant.

There are cracks in the surface, though it looks smooth and sound to the naked eye.

Last winter, we enjoyed the heaviest amount of rainfall that Los Angeles has seen in years. Although not enough to entirely counter the trend of drought that has plagued the region, it did refill reservoirs and contribute to record snowpack in the mountains, dramatically relieving the strain on water reserves. However, this exceptional amount of rain also managed to seep through the apparent (but not obvious) cracks in our roof, puckering the paint in our kitchen ceiling. While the roof remains structurally sound, the asphalt sheeting is showing its age and beginning to crack under the incessant heat of the sun.

When a minor leak from our water heater led to a small amount of construction in our kitchen, we ended up repainting the entire room and fixing the ceiling in the process. Of course, that will look fabulous up until the time when we have another multi-day deluge. Continue reading Sealing the Roof →

Interview With Radiation Therapist Turned Stage IV Lung Cancer Patient

Cancer, Health and Wellness, , , , , , , , , , , , ,

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

Cancer, Health and Wellness, , , , , , ,
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 →

Inside a Chemo Clinic Phamacy

Cancer, Health and Wellness, , , , , , , , , ,
Where the concoctions are prepared.

Before I concluded my chemotherapy, I sat down with the pharmacist who had mixed my drugs for nearly three years and recorded our conversation for my erstwhile podcast, The Deep Breath. It offered a revealing look inside the process of administering chemo, as well as other drugs used to treat cancer patients.

Meet Evan, the pharmacist. Click his image to hear his insight into the treatment of cancer through pharmacology.

I did not realize that I was one of the longest consistent patients currently receiving treatment at this facility. Although I was preparing to call chemo quits after slightly more than 2.5 years, I knew of at least one patient who had been on the same basic regimen as me for around seven years. But that had been before my time. As I settled in to interview my pharmacist, he revealed that he was not aware of any patient at the clinic who had been receiving chemotherapy as long as I had been since he started the job. I appreciated the special distinction, even though I had mixed feelings about it. Continue reading Inside a Chemo Clinic Phamacy →