Monthly Archives: July 2018

Self-Care Challenge #4: Keeping It Together

Sometimes, self-care comes down to maintaining your own emotional health. And this is not always an easy thing to do. But if we do not work on it, keeping track of our own ups and downs, it can become too easy to get lost in a sea of anxiety and depression, carried along on waves of ennui and eventually drown out in the doldrums.

For the past seven weeks, I have been living in the midst of a clinical trial for poziotinib, a highly promising (and so far apparently quite successful) targeted cancer drug. But as with all clinical trials, there are areas of uncertainty in the treatment process, particularly with regard to side-effects and tolerance.

There have been a number of days where I have questioned whether I could keep going on with this drug — but I had vowed to see it through to my first scan at four weeks, no matter what. That scan showed a dramatic reduction in my tumor load, convincing me that another four weeks at the same dose was worth trudging through, no matter how thick and deep the gunk. But in spite of my optimism and the addition of antibiotics and antihistamines to the mix of my daily drug regimen, the primary side-effect — my full-body rash — has continued to get worse.  Continue reading Self-Care Challenge #4: Keeping It Together

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