Recent Posts From Off the Blog

Here are a few items that you may have missed if you don’t follow me on Facebook or Twitter. See if you can find the dominant themes of the past few months!

From the Philadelphia Inquirer:

http://www.philly.com/philly/health/addiction/opioids-are-the-only-way-he-can-manage-his-cancer-pain-stigma-creates-more-problems-20180607.html

From LungCancer.net:

https://lungcancer.net/living/scans/

https://lungcancer.net/living/looking-up/

https://lungcancer.net/living/banish-survivor-from-dialogue/

https://lungcancer.net/living/awareness-breasts-to-lungs/

https://lungcancer.net/living/pets-responsibility/

https://lungcancer.net/living/relationships-bedrock-quicksand/

https://lungcancer.net/living/symptoms-vs-side-effects/

https://lungcancer.net/living/drug-free-pain-relief/

https://lungcancer.net/clinical/going-off-label/

https://lungcancer.net/living/protecting-love-worry/

https://lungcancer.net/living/body-changes/

https://lungcancer.net/living/weight-loss/

https://lungcancer.net/living/handwork-art-therapy/

https://lungcancer.net/living/prevention-risk-reduction/

https://lungcancer.net/living/bringing-friends-together/

https://lungcancer.net/living/okay-to-say/

https://lungcancer.net/living/taking-deep-breath/

https://lungcancer.net/living/needle-biopsy-experience/

https://lungcancer.net/living/biopsy-pneumothorax/

https://lungcancer.net/living/effect-relationships/

https://lungcancer.net/living/panic-attacks-reality-checks/

https://lungcancer.net/living/pain-faking-it/

https://lungcancer.net/living/opioids-cancer/

https://lungcancer.net/living/victim-blaming-narrative/

And that is everything published from April through June since the last time I published an update of my off-site material… Happy reading!

 

Endurance and Payoff

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

After lung biopsy, lying in bed for the removal of pneumothorax ventilation tube.
Pneumothorax Ventilation Tube

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

Emotional Illness

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

Self-Care Challenge #3: Exercise

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

The Rash Is Back

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

Self-Care Challenge #2: Nutrition

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

Hollywood and Cancer, Honesty vs a Lazy Sentimental Tool

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

Wellness Warrior Myths and Alternative Truths

The series of posts I wrote on Wellness Warriors and the misrepresentations that are made about health and wellness in cancer care are among the most important things on this blog. Participating in a range of forums where cancer treatments are discussed, it continues to amaze me how many people passionately believe unsubstantiated claims about suppressed cures, Big Pharma conspiracies, and government efforts to keep the medical-industrial complex in business. The problems here are rooted in a combination of legitimate fear and a lack of skeptical inquiry.

Too many people succumb to their own confirmation bias before even getting close to exercising basic critical thinking skills. And living in an era of Social Media, where the spread of Fake News is often faster than wildfire, it takes a lot more concerted vetting by readers to separate fact from fiction — an effort that few seem willing to make. Continue reading Wellness Warrior Myths and Alternative Truths

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

Upcoming: Self-Care Challenges

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