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
Spoiler alert: my rash has returned.
Before I get into the details of this new leg of my journey, I’m taking a moment to reflect on the side-effects of the past. In August of last year (2017), I stopped taking chemotherapy due to signs of progression. After about a month of cleaning out my system, I noticed a serious boost in both my mental and physical energy levels. My body began shaping up. I felt really good. And I started my first “targeted” therapy, the drug Gilotrif (generic name, afatinib).
Gilotrif was highly promising at the time. It had shown some level of effectiveness on the HER2 mutation in cancer studies but was still off-label for my use because it was designed to target a very closely related mutation. I loved it at first, however, because I kept feeling better and — in comparison to my 2 years and 8 months on Alimta (generic name, pemetrexed) — there was just an amazing lack of initial side-effects. Alimta had been fairly easy to tolerate overall and I had no real complaints considering how well it had worked. But I did have some skin and digestive issues, as well as persistent fatigue, that plagued me every month. Toward the end, the skin issues were particularly bothersome, and I was beyond thrilled when they cleared up. Continue reading The Rash Is Back
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
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
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
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
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
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
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