Tag Archives: Rash

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

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