Tag Archives: Blogs

Inability To Write

Trigger Warning: Graphic and Bloody Content Related to Medical Treatment

Also, there is a link to my podcast, equally scary.

I call the following picture “Why I Can’t Have Nice Things…” Continue reading Inability To Write

To Clear or Not to Clear

I was told twice in one day this week that I looked “bright.” I was smiling and active, keeping myself busy and directed, and I was surrounded by people who I had not seen in several months (along with a few I had never seen at all). It was the good nature of reconnecting in a friendly crowd without the threat of being lost in it, I imagine, that sparked my particularly good mood on that occasion. The description was used again on subsequent days by unrelated people, causing me to take note that, perhaps, the whites of my eyes have simply become whiter. (Insert your own Revolutionary War joke here.) Continue reading To Clear or Not to Clear

Dying, Redux

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

Poziotinib and Me at Month Three: Feeling Crusty (But Still Onboard)

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)

This Is Not My Body

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

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

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