Tag Archives: Blogs

Self-Care Challenge #1

Last week I posted about why I was beginning these challenges, and why I suggest downloading the app from Health Storylines to chronicle your progress. I am hoping that you will join me in these challenges, and comment here or on my social media pages to share your own insight, success, or thoughts about them.

My First Self-Care Challenge

The basic idea here is that we can use these challenges in our lives as part of an ongoing health plan. This isn’t about doing it one month and then moving on, but rather building upon these challenges by continuing to incorporate them into our daily lives. I’m choosing to begin with something that should be simple enough, but I think might be more broadly relevant than any of us realize. For the next few weeks, I’m going to diligently work on this task: Continue reading Self-Care Challenge #1

Recent Posts and Updates

Because I am sometimes spread more thinly than others across the social media spectrum, I need to add in one of these aggregate posts to link over to articles you might have missed because they were not posted here on my blog. In order to maximize my ability to target other patients and caregivers, I have published quite a lot on LungCancer.net while reserving the space here on my blog for more personal or passionate material.

While I hope that my readers are keeping up with the wider range of my work and social comments either by following my author page on Facebook or reading my Twitter feed, it is still easy to miss new material in these over-saturated times.

So, without further ado, here are links to some of my recent material you might have missed. Don’t forget to option-click so that these links open in a new tab, making it easier to come back to this page for more clickety-clicking fun! Continue reading Recent Posts and Updates

Another New Beginning

Well, it’s time for another needle. I’d been successfully avoiding a lot of these for the past six-ish months, but the afatinib pill I had been taking simply wasn’t working the way we needed it to. (Which is to say, it did not stop the cancer from spreading, much less reduce its presence.) So, on this uncharacteristically rainy Southern California day, I commuted through a maze of side streets to avoid morning rush hour traffic on my way downtown to the university hospital where I am to receive today’s infusion. It’s a far cry from the cozy satellite clinic I had been accustomed to up in Pasadena. I’ve spent the better part of 90 minutes waiting for things to be prepared since I checked in; I’ve wandered the maze of the hospital, searching out a paltry offering of snacks in the lower-level cafeteria and the free coffee in the main waiting room, sitting in various rooms and surfing the free Wi-Fi (but unable to stream Flint Town on Netflix, much to my chagrin).
 
Here, in the Day Hospital, as it is called, the vibe is wholly different than the spa-like atmosphere of my old chemo haunt. While this is certainly clean and bright, it feels like a hospital. There is nothing aesthetically pleasing about the large room cordoned off by sliding curtains. A few windows along one wall allow a tiny amount of natural light in, but they may be closed off by curtains at any time. Yet the reception staff seems bright and friendly.
 
The drug I am getting today — ado-trastuzumab emtansine, or Kadcyla — is not a traditional chemotherapy, and there have been some weird holdups in getting it properly scheduled. In part, this is because my use will be slightly off-label. My insurance company refused to approve it — but they also would not deny it, leaving me in a strange limbo where other plans were difficult to make. The hospital pharmacy has been working with the drug manufacturer to cover the costs in case insurance ultimately denied coverage, and we are moving forward with the understanding that, somehow, the medication will get paid for. These concoctions are so expensive that it is unreasonable to expect that patients could actually afford to pay out of pocket, but somehow the system works to cover these costs most of the time. The trick is figuring out how. I am three weeks delayed getting in for this new treatment, which hopefully will be drastically more effective than the pill I had been taking. At least the bar there isn’t very high.

Continue reading Another New Beginning

The Overstayed Welcome

We all know — or we should all know — that lung cancer is one of the biggest killers in our society. With an estimated average of 433 people dying every day from some form of this disease, there is no question as to why it is considered such a horrifying diagnosis. Lung cancer kills more than any other cancer, and more than its three closest competitors in the cancer arena combined. If there were cancer cage matches, lung cancer would win virtually every time based on the sheer volume of its devastation and mayhem. Yet, in spite of receiving only a fraction of the research funding that other cancers get, a surprising number of treatments have emerged to help lung cancer patients outlive their initial prognosis.

But you have lung cancer! You’re expected to die. And, by the way, you’re expected to die quickly (and brutally). That is what the common narrative tells us.

Lung cancer treatment has made amazing bounds over the past decade. For a growing number of patients, living with Stage IV lung cancer is no longer an immediate death sentence, if a death sentence at all. For some of them, especially those diagnosed “earlier” in the Stage IV spectrum, while there are still a few months to alternate between treatments to find what works, or for those lucky enough to have an actionable mutation, even this advanced type of lung cancer can be treated as a chronic illness instead of a fatal one. Earlier and better diagnoses have led to younger and healthier patients having a chance to engage in this challenge before their cancer has beaten them down from within, and they have brought a new level of perseverance to the process. Continue reading The Overstayed Welcome

Radiation and Me, A Love Story

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

Support Where It Is Due

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

A Christmas Story

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

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:

Sifting Through C-Word Headlines

Fighting Misinformation and Fake News About Lung Cancer

Health Claims, Water, and the Internet

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.

 


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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