Tag Archives: Blogs

Living Well / Ending Well

Dear Readers

It’s with a heavy heart that I write this message.  My younger brother Jeffrey Poehlmann passed away from complications due to a sudden and fierce reoccurrence of his lung cancer in his “good” lung.  Jeff, as you all know from reading this blog, spent the last four years of his life with the knowledge that he had an unwelcome and invasive guest in his body and forged ahead every day looking to the future and taking as much positive living in the moments as he could.  He knew he was working on borrowed time and wanted to do as much good as he could for the advancement of lung cancer awareness through this blog, his writing for www.lungcancer.net, and his Patreon site.  Hopefully, we will be able to round up all this writing in book form at some point,  one of the goals he had in mind from the start.

 

Jeffrey’s last treatment, which you read about, was taking its toll.  The Poziotiniv  chemo treatment began May 23rd. This targeted therapy was appearing to work incredibly well at reducing the main tumor marker and other metastases, while at the same time providing a litany of other symptoms including a full body rash that all his remaining energies went to battling.  Since the 26th of  September,  Jeffrey’s doctors took him off these meds to give his body a chance to recover.

He subsequently developed what appeared to everyone to be pneumonia.  As pneumonia symptoms seemed to progress and his cough kept him from any sleep, Jeff began taking oxygen on October 10th during his last week at home.  On Thursday morning, while his wife was at work and daughter at school, Jeff called an Uber to take him over to USC Norris Comprehensive Cancer Center for evaluations.

That Thursday the x-rays showed complications in his formerly good lung; he was placed in a private room in ICU.  His lung was then drained giving Jeff incredible relief and the ability to feel well enough to easily communicate and had what he called his most restful and full sleep in weeks that night.  Unfortuntately, the bronchoscopy on Friday showed a huge cancer invasion of the lung and it was obvious to the hospital staff that he wasn’t long for this world.

With his typical good nature and positive outlook, Jeff continued through till Sunday morning Oct 21st, 2018 at 3:37 am when he finally let go.  He was with family his final day and able to be fully present with his daughter and wife, two surviving siblings and his mother to say goodbye.  We had a few tears, plenty of smiles and lots of talk about how grateful he was for the love and support all around him — family, friends, caregivers, and this extended community of you, his readers.

We will continue to maintain this site with more information and postings, albeit on a more limited basis.  His last wish in his Will was to establish a fund for his daughter’s future education.  Please follow this link to the GoFundMe site that we set up for the college fund.

https://www.gofundme.com/aubrey039s-education-fund

In the process of fulfilling Jeff’s wishes, like posting this announcement on his blog, I am frequently overcome by the love and support Jeff received from you, his readers, as well as from friends and family across the US. He loved well and was well loved.

Best,

Christopher Poehlmann

10-29-2018

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