One of the hardest things many chronically ill patients face is that moment when they realize they must ask for help. Why is that so hard? We live in a society that values self-reliance to the point, one might argue, that it becomes dogmatic. If you require assistance, you’re a taker. Everyone should be self-sufficient — or at least privileged enough to be able to rely on assets they may or may not have truly earned. But clearly, we cannot all be that fortunate, and certainly not all of the time. Reaching out for help should not be stigmatized. And one way to normalize the process is simply by practicing.
Another Month, Another Challenge
It is time for my monthly Self- Care Challenge, as an ambassador for the Health Storylines self-care program. This month, the challenge is to Just Ask. Every day, without being gratuitous, find something that you genuinely need assistance with and ask for it. Continue reading Self-Care Challenge: Just Ask
I have tried to gather a few different perspectives on what it feels like to die or go through the process of dying, including my lengthy interview with Michael March just prior to his death not long after I met him online. Below, I present a different perspective entirely from Claire Wineland, a Cystic Fibrosis patient who had been advocating about her disease for quite some time. It is a video I found on YouTube that she uploaded a while back, explaining her own experience with technically dying on a number of occasions from complication arising from her disease. Continue reading Dying, Redux
I spent well over 45 minutes combing scabs out of my sparse hair to commemorate the end of the second week of my third month on poziotinib. Not all at once, mind you; I had the good sense not to stand hunched over the sink for more than 20 minutes at a stretch. When I was done, or at least thought I should be, I rewarded myself by sort of washing and conditioning the wiry bristles that cover much of my scalp. Such are these minor celebrations. Continue reading Poziotinib and Me at Month Three: Feeling Crusty (But Still Onboard)
Let’s get one thing straight: emotions do not cause disease. The fault of your physical illness very likely lies with something other than you. The whole notion that anything from kidney stones to cancer could be traced back to an emotional block, repressed anger, wrongs un-righted, or any other random psychological hurt from this life or a past one, is so corrupt that it should never be given credence by any rational being. Yet throngs of people with well-intentioned sounding titles like “life coach” or “healer” spread these malicious little bits of victim blaming as if they were offering salvation in a bottle of snake oil.
That said, I want it to be clear that not everyone who identifies as a healer is guilty of either victim blaming or willfully misleading those who they are trying to help. I’ve known incredibly sincere, warm, compassionate people who do their absolute best to improve the health and well-being of others through a wide swath of tools and approaches, arguably with strong results. And, frankly, many people need some form of guidance in their lives and have relied successfully on many such “coaches” to get where they need to be. I’m not condemning whole industries or forms of practice or even job titles here; this isn’t about valid occupations, but rather about those who choose to exploit the fears and insecurities of patients under the guise of offering miraculous cures through attitude adjustment. Continue reading Emotional Illness
In my first Self-Care Challenge, I encouraged better and more sleep.
In my second Self-Care Challenge, I focused on nutrition and weight management.
This time around, I want you to join me in working on better exercise habits.
Exercise is essential for a variety of reasons, as we all know. My concerns are centered on the importance of building and maintaining muscle mass as well as ensuring optimal functioning of the lymphatic system. I’ll be chronicling my own progress with the MyJournal function of the Health Storylines app that I’ve been using to track my medication side-effects and remind me of my dosing schedule. I am not naturally inclined to exercise, at least not in any scheduled way, so having an app that automatically reminds me when things are due is helpful — and I like keeping track of whether or not I accomplished my daily goals in one place.
For purposes of this challenge, I am going to break the exercise down into two categories. The first is simple: just walk more. The second is weight training, but this does not have to be an aggressive regimen done at the gym. My plan is to keep it simple and not push my body too hard, but the load, of course, is up to you. Continue reading Self-Care Challenge #3: Exercise
Welcome to the next exciting edition of my Self-Care Challenge! Feel free to follow along in the Health Storylines app that I use to journal my progress. Or let me know about your progress below in the comments. (There are a few advantages to using an app to track your progress, which I’ll reference below.)
This time I am focusing on nutrition — specifically, nutrition and weight management.
As you may know from following my blog or my social media posts (links in the right column of this page), I lost a fair amount of weight in February. Being down over 20 pounds as a result of radiation to my intestines and then a bout of the stomach flu took quite a toll on me. Not only did I look a lot different, but I felt weak and, of course, my clothes no longer fit me — not even my “skinny” clothes. Fortunately, I started regaining some of that weight quickly and managed to put on about ten of the lost pounds within a couple of weeks. Continue reading Self-Care Challenge #2: Nutrition
Sometimes, Hollywood gets it right. There are a few films and television shows that have nailed the patient or caregiver experience quite well. More often than not, however, Hollywood uses Cancer (in the broadest sense) whenever it needs to cue a terminal illness to create sympathy without the need for exposition, or force sentimentality when character development and theme are not enough to dredge up a true emotional response.
This problem is far from new. Hollywood has long used a heavy hand to manipulate the audience. And shorthand is often required to tell a story in the confines of two hours or less. Rarely does cancer show up in a motion picture as a fully formed subject, driving the plot on its own or acting as a subplot with any sense of realism or sincerity. It is an issue that has bothered me since I began my own treatment and stumbled into a series of movies in which cancer was a mere tool for pushing emotional buttons, sometimes callously, frequently gratuitously. Warning: spoiler alert — I am probably going to ruin a few surprise plotlines in the coming paragraphs. Continue reading Hollywood and Cancer, Honesty vs a Lazy Sentimental Tool
One of the most important aspects of cancer treatment is self-care. As with any chronic condition that requires ongoing medical attention, cancer patients need to take charge of certain aspects of their own lives in order to optimize their success and live the healthiest way possible. Fortunately, there are many tools out there that can help, especially in this age of the ubiquitous mobile device.
Since my own diagnosis of Stage IV lung cancer back in November of 2014, I have made it my mission to share my story and hopefully help other patients along the way. I’ve clearly had my own ups and downs, and in the ensuing years, I have managed to learn a thing or two about the process of treatment. Being a vocal advocate on multiple forums, I have been fortunate enough to connect with a wide variety of patients and caregivers, as well as various medical professionals and individuals in related support industries. Sometimes I reach out to them, sometimes they reach out to me. Continue reading Upcoming: Self-Care Challenges
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
Here’s a term that is often misused or misunderstood, because it is used pejoratively, to insinuate something other than what it actually means:
Continue reading Terms and Conditions: Language Matters