Tag Archives: chemo diaries

Living Well / Ending Well

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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

To Clear or Not to Clear

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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 →

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

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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) →

Week One: The Oozing Begins

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I am now into the third month of my clinical trial for poziotinib. After the first two months, I had to take two weeks off for recovery from the rash it gave me. I am, however, glad to be back on the drug for the very simple reason that it was effectively killing the cancer within me. That is not a claim I make lightly, or, sadly, have had reason to make much at all over the past year.

When I was first put on chemotherapy back at the end of 2014, it was because there were no targeted therapies or immunotherapies available, either on the market or through clinical trials, that were likely to work for me. Chemo seemed to be the only option and, in some ways, it felt like a last-ditch effort. My tumor was considered inoperable, the metastasis had spread too far and wide, and radiation was not even being presented as an option.

While I was primed for a limited response and the possibility that I might only get a few months extension from the process, it turned out that chemo kind of worked for me. It worked well enough, in fact, that I would stay on it for over two and a half years — most of that time, simply keeping the cancer growth in stasis. There was talk of the possibility of being on that drug for five or more years at one point, but not long after the two-year mark I began to notice small changes in my scans. Very small, but changes, nonetheless. Continue reading Week One: The Oozing Begins →

This Is Not My Body

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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

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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

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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 →

Another New Beginning

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Well, it’s time for another needle. I’d been successfully avoiding a lot of these for the past six-ish months, but the afatinib pill I had been taking simply wasn’t working the way we needed it to. (Which is to say, it did not stop the cancer from spreading, much less reduce its presence.) So, on this uncharacteristically rainy Southern California day, I commuted through a maze of side streets to avoid morning rush hour traffic on my way downtown to the university hospital where I am to receive today’s infusion. It’s a far cry from the cozy satellite clinic I had been accustomed to up in Pasadena. I’ve spent the better part of 90 minutes waiting for things to be prepared since I checked in; I’ve wandered the maze of the hospital, searching out a paltry offering of snacks in the lower-level cafeteria and the free coffee in the main waiting room, sitting in various rooms and surfing the free Wi-Fi (but unable to stream Flint Town on Netflix, much to my chagrin).
 
Here, in the Day Hospital, as it is called, the vibe is wholly different than the spa-like atmosphere of my old chemo haunt. While this is certainly clean and bright, it feels like a hospital. There is nothing aesthetically pleasing about the large room cordoned off by sliding curtains. A few windows along one wall allow a tiny amount of natural light in, but they may be closed off by curtains at any time. Yet the reception staff seems bright and friendly.
 
The drug I am getting today — ado-trastuzumab emtansine, or Kadcyla — is not a traditional chemotherapy, and there have been some weird holdups in getting it properly scheduled. In part, this is because my use will be slightly off-label. My insurance company refused to approve it — but they also would not deny it, leaving me in a strange limbo where other plans were difficult to make. The hospital pharmacy has been working with the drug manufacturer to cover the costs in case insurance ultimately denied coverage, and we are moving forward with the understanding that, somehow, the medication will get paid for. These concoctions are so expensive that it is unreasonable to expect that patients could actually afford to pay out of pocket, but somehow the system works to cover these costs most of the time. The trick is figuring out how. I am three weeks delayed getting in for this new treatment, which hopefully will be drastically more effective than the pill I had been taking. At least the bar there isn’t very high.

Continue reading Another New Beginning →

The Overstayed Welcome

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We all know — or we should all know — that lung cancer is one of the biggest killers in our society. With an estimated average of 433 people dying every day from some form of this disease, there is no question as to why it is considered such a horrifying diagnosis. Lung cancer kills more than any other cancer, and more than its three closest competitors in the cancer arena combined. If there were cancer cage matches, lung cancer would win virtually every time based on the sheer volume of its devastation and mayhem. Yet, in spite of receiving only a fraction of the research funding that other cancers get, a surprising number of treatments have emerged to help lung cancer patients outlive their initial prognosis.

But you have lung cancer! You’re expected to die. And, by the way, you’re expected to die quickly (and brutally). That is what the common narrative tells us.

Lung cancer treatment has made amazing bounds over the past decade. For a growing number of patients, living with Stage IV lung cancer is no longer an immediate death sentence, if a death sentence at all. For some of them, especially those diagnosed “earlier” in the Stage IV spectrum, while there are still a few months to alternate between treatments to find what works, or for those lucky enough to have an actionable mutation, even this advanced type of lung cancer can be treated as a chronic illness instead of a fatal one. Earlier and better diagnoses have led to younger and healthier patients having a chance to engage in this challenge before their cancer has beaten them down from within, and they have brought a new level of perseverance to the process. Continue reading The Overstayed Welcome →