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.
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 am now into the third month of my clinical trial for poziotinib. After the first two months, I had to take two weeks off for recovery from the rash it gave me. I am, however, glad to be back on the drug for the very simple reason that it was effectively killing the cancer within me. That is not a claim I make lightly, or, sadly, have had reason to make much at all over the past year.
When I was first put on chemotherapy back at the end of 2014, it was because there were no targeted therapies or immunotherapies available, either on the market or through clinical trials, that were likely to work for me. Chemo seemed to be the only option and, in some ways, it felt like a last-ditch effort. My tumor was considered inoperable, the metastasis had spread too far and wide, and radiation was not even being presented as an option.
While I was primed for a limited response and the possibility that I might only get a few months extension from the process, it turned out that chemo kind of worked for me. It worked well enough, in fact, that I would stay on it for over two and a half years — most of that time, simply keeping the cancer growth in stasis. There was talk of the possibility of being on that drug for five or more years at one point, but not long after the two-year mark I began to notice small changes in my scans. Very small, but changes, nonetheless. Continue reading Week One: The Oozing Begins→
Crouched over the kitchen sink, I surged with a repressed groan, stifling the convulsive impulse as tears broke free; I cried, uncontained, momentarily unaware why. I was so used to keeping it in, I had become disconnected from what I was actually feeling — ironic, because what I was feeling right then was disconnected.
I did not recognize my body. This vessel in which I was contained made no sense to me at all. It responded to my thoughts and commands, but it felt completely foreign. Looking down at my arms, my hands, my fingers, I recognized nothing. They could hold the dishes I was washing, turn the knob on the faucet, even scrub with the brush. But there was a clumsiness about them, an awkwardness that was hard to explain or rationalize, except to know immediately that none of that was part of my body. None of it was Me.
Such is the effect of bodily changes that occur under cancer treatment. I was experiencing a slight case of dysmorphia, that feeling of certainty that you are not in the right body. It passed, but the emotional impact lingered. Continue reading This Is Not My Body→
I have friends who are long distance runners and I have watched them struggle through their pain to achieve their goals. Although I used to train for both cross country and track way back in middle-school, I can no longer run. But I do understand a thing or two about the process. And I appreciate what it means to endure hardships in search of a personal reward.
Beginning a Clinical Trial
At the end of May, I began participating in a clinical trial for Poziotinib, a new targeted therapy that works on mutations in the EGFR and HER categories. Naturally, within days of my May 23rd start, I had already begun exhibiting side-effects from the new medication. The resulting rash has persisted and spread, morphing into a completely new experience for me. I thought at the time that the minor ordeal I had in preparing for the clinical trial would have been the biggest challenge of the trial itself: first I went in for a “simple” needle biopsy procedure, then I had to stay to deal with the effects when things did not go exactly according to plan. The experience even inspired an opinion piece for the Philadelphia Inquirer. But I passed over that (still relatively minor) road bump and ran headlong into the clinical trial and resulting crash back into Rashville.
Having a rash does not sound all that bad in the grand scope of things. A little salve, a dollop of willpower, and it should be easy to weather. Itching too much? Slip on some gloves or spray it with lidocaine. Rashes pass. At least it is not nausea or debilitating pain or sleeplessness. Well, at least it is not nausea. Continue reading Endurance and Payoff→
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→
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→
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→
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→