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[jpoehlmann]

Give It Away

When my father-in-law died a couple years ago, I saw my wife struggle with every new holiday. Every special event brought with it a memory shared with her dad. Living with grief may become more manageable as time passes, but it also seems most intense on the one day dedicated to celebrating a life. When there are no longer candles to add to the cake, a birthday can become the lightning rod for…

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Wish You Were Here

Wish You Were Here

Last weekend, I went back to the town Jeff and I shared as kids.

Woodstock is quiet and comfortable, with a picturesque central square ringed by historic buildings. On every block, a house holds some faint memory that at once fills me with glee and melancholy. My hometown invites me to return, but it never seems to allow me to go back.

The occasion of this trip was to celebrate Jeff’s life. Our…

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[jpoehlmann]

Support Jeff on #GivingTuesday

Support Jeff on #GivingTuesday

It has been a month since the sad news of Jeff’s passing. His death ended four years of writing about his experience with lung cancer, but the courage, strength and hope arising from his words persevere. We can continue to be inspired by his optimism and give back to help support his most important project.

A primary concern for Jeff throughout his journey was how to secure future education for…

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[jpoehlmann]

Losing Bits

Earlier this month, my computer broke. It was a long time coming, an inevitable journey for a laptop Apple now calls “obsolete.” Having already suffered everything from missing screws to intermittent lines showing the age of the screen,  the slowness eventually made it impossible to complete a backup. My data at risk, I brought the computer in for care.

A week and a few hundred dollars later, a…

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Voting With Jeff

Today is Election Day, so declared in 1845. It was a practical decision that accounted for a number of factors our young nation was facing.

We recognized the realities of our agrarian nature by scheduling a vote after harvest season, but not so far into winter as to make northern roads impassable from snow. We saw the effects of technology improving our communications, compounding the advantages…

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[jpoehlmann]

Beginning

“How do I begin?”

This is the question that paralyzes me most when facing the death of someone I know and love. As I start to consider possible answers, my mind and my heart talk over each other with a swirl of suggestions that avoids consensus. I get stuck between a desire to connect with others and the guilt over not doing enough while my friend was alive, between fixing the unfixable and…

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[jpoehlmann]

Living Well / Ending Well

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…

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[jpoehlmann]

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…” (more…)

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[jpoehlmann]

By chance, cleaning through my unread emails, I stumbled across notes and pictures for a post I had planned for nearly a year ago and for some reason never published. It struck me that it could very nearly have been something I wrote just this week. There wasn’t much written, just two rough paragraphs, but it did come with a nice collection of pictures. Here is what would have been, from November 4th, 2017:

Side Effects Have Me Scratching My Head

There’s no doubt that dealing with the side effects of cancer treatment can be perplexing. Patients deal with everything from digestive issues to pain to total hair loss to fatigue to stiff joints.

Over the last 3 years, I’ve had my share of issues and adaptations. Sometimes, alleviating a side effect proves relatively simple: take a pill, stop taking a pill, wear compression socks, change diet, wear a hat, take another pill, just accept it as a new part of life… But my current side effect of note has me scratching my head. It Itches. Oh, it itches. And nothing seems to be able to make it stop.

That smiling face implies something was soothing my scalp under that plastic wrap.

The major tip off that this was a year ago: hair covering the red scalp!

This “dandruff” would be laughed off my shirt today!

The Rosemary Infusion that I made as a rinse to try soothing my scalp.

That was then, this is now.

Looking back at the posts, notes, and pictures from my experience on afatinib (the first targeted drug in the EGFR TKI category that I had tried), the experience seems so quaint. I know it certainly did not feel that way back then, however.

Notice anything different about the hair? Much edgier in the current pics. I should probably have gone for this look years ago. After having spent a good deal of my morning harvesting a giant leaf of aloe vera and then slathering the juice and gel all over my arms, chest, and scalp, I am kind of excited about revisiting that rosemary infusion. I recall it feeling good when I rinsed my hair with it and I do like the scent. Maybe it will be another viable addition to my arsenal of things that seem to work for a few hours or less (like yesterday’s Aveeno bath, which would have worked longer if the water didn’t start getting cold).

Itching, Itching, Scratching… By chance, cleaning through my unread emails, I stumbled across notes and pictures for a post I had planned for nearly a year ago and for some reason never published.

[jpoehlmann]

Self-Care Challenge: Just Ask

Self-Care Challenge: Just Ask

One of the hardest things many chronically ill patients face is that moment when they realize they must ask for help. Why is that so hard? We live in a society that values self-reliance to the point, one might argue, that it becomes dogmatic. If you require assistance, you’re a taker. Everyone should be self-sufficient — or at least privileged enough to be able to rely on assets they may or may…

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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.)

For those who may have missed this small detail in the meandering story of my life, I work part-time as a barista at my daughter’s school. It has been a fine, welcoming community for me in the years since my cancer diagnosis, and this steady bit of structure has helped me immensely as I have gone through my various treatments. The incidents mentioned above took place at the school, during back to school events, and for much of the time I was high up in the converted trailer that we use as our coffee “cart.” It is a nicely renovated camper and, for me, both an occasional oasis and office away from home, as well as something of a social hub.

On busy mornings, which last roughly an hour, it often takes about all I can put forth for the day. At least on my feet — I try to reserve the mental energy to write when I return home, but that does not always happen. Asked today how my stamina has been, I admitted that it was improving on my current treatment, but that it still was highly relative to whatever was going on. Up in my perch, however, I generally have the advantage of looking generally impressive by virtue of height and separation by counter space. And I have the advantage as well of my morning energy burst. These things matter in how I am perceived, a fact continually reinforced when people there learn for the first time about my lung cancer treatment, and moreover when people who have been drinking my coffee for years get caught up on how I am actually doing. Which brings me back to looking so bright.

In one of those coincidences of timing, my recent dose reduction in poziotinib happened just before the first week of school. It happened, in fact, just in time for my body to begin clearing up a good amount of the acneform rash that covered my face and scalp. Not much change occurred below the neck, and in many ways, my hands continued to take more of a beating, but those aspects would remain largely hidden under sleeves and gloves. My face, though; my face looked clear. Thanks to a spontaneous decision to wash my entire head with Noxzema, even to shave with a thick layer of the stuff, and then douse my skin in a luxurious coating of a mysterious oil blend I keep handy, I am pretty sure I downright glowed for a good 48 hours straight.

The increasingly rare feeling that there was nothing rashy going on under the beard.

Briefly, I looked like this.

  But a week later, I am wondering if the experience was something of a fluke. My skin has begun breaking out like crazy, especially along the jawline and neck and intensely within the small remaining patch of beard I retained on my chin. My scalp, which had done exceptionally well this past week even as I reduced the steroid cream that paved the way for comfortable nights on my pillow, has suddenly grown more sensitive. It is covered with a whole new range of lumps that would drive a phrenologist crackers, even if they are not erupting into obvious blemishes.

The experience has me wondering what the next phase will be for my skin. The rash has proven to be both consistent and unpredictable over the past few months. While my larger concern is the effect poziotinib is having where I cannot see the results with my eyes, it is difficult day to day not to be a little obsessed over what is going on where I can see. I also find myself obsessing just a little bit over what other people can see and how it might affect them. This is not just about strangers or clients or even friends, but also about those closest to me and who have no means of obvious escape from what they see.

I bleed a lot, for instance, and that can freak people out, even those who see it all the time. It is more than an inconvenience to me, too, since I tend to notice it after I have already potentially ruined a new set of sheets or smeared the wall. Even taking to wearing nitrile gloves as much as I do (and some activities, like writing, would be virtually impossible much of the time without them), I still manage to leave traces of myself where I had not planned. My friends have joked a lot about how easy the gloves would make it for me to go about doing crimes, but they do not realize the trove of DNA that I am constantly still leaving behind.

I focus a lot on the exterior side-effects, but there is one prominent issue that is invisible and not easily attributable. Throughout this process, I have been plagued by increasing night cramps in my legs and feet. These are cramps that were screamingly painful, twisting, long-lasting, and unlike anything I had felt. They were nothing like the charlie horses I have occasionally gotten since childhood or the restless leg syndrome that has been an on-again, off-again annoyance over the last decade or two.

To control the cramps, which were diagnosed as simply severe but somewhat common night cramps, I was put on the drug Ropinirole. The drug decreased the pain, but soon the cramps started back up and became more frequent. Then I began the drug Baclofen, which initially seemed to work and then didn’t. The two drugs together seemed promising, and then they weren’t. Now I am going to begin Carisoprodol, but my options may be narrowing quickly. I am hoping that this new one is effective and stays effective because I have noticed two important shifts in the cramping over the past couple weeks: one, it has begun happening during the day, not just when I am sleeping, and two, it has also affected by arms and hands.

While the medication has made the pain tolerable and seems to keep the instances comparatively brief, this is all part of a process of adaption. Getting through each phase is a teaching moment of sorts. Sure, we are generating good data for the clinical trial, but I am also being given important data about my own body and how it responds. I am also learning quite a bit about physical resilience and emotional tolerance, and possibly where my own limits lie.

For now, still weeks away from my next scan, I remain in a holding pattern to discover whether my body will adjust to the lower dose of medication with a correspondingly lower impact from the rash, and also whether the lower dose of medication will continue to provide a sufficient medical response against my cancer. I am optimistic on both fronts, but wait and see is still wait and see. So each morning I look in the mirror, qualifying the clarity of my skin. It’s my crutch, I suppose. Do I spread moisturizer or gently cleanse or dare I step into the shower? I prod at my flesh, examining each square inch that I can focus on, photographing what I can’t see with always unsatisfying results. What exactly is my medication doing?

What exactly is my medication doing?

I hope that my body figures it out. And I look forward to getting the actual medical spin on this question. The answers cannot come too soon.

If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on Twitter, Facebook, Tumbler and many other fancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)

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).

[jpoehlmann]

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 deathnot 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…

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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.

To end week three and begin week four, I celebrated by taking a short road trip with my family and watching my wife and daughter swim while I huddled in the shade and wore a wide-brimmed hat. Even being on my (slightly) reduced dose of Poziotinib, I know better than to let my rash be exposed to unnecessary sunlight.

If you want to catch up on this poziotinib business, you can click to read about my experiences with my first week of the trial, the epic first month, slogging through the second month, and the beginning of this third month. All with appropriately gratuitous pictures, of course.

Not Just the Rash

Also at the beginning of week four, I started taking a new drug to control the frequent night cramps I have been getting in my legs and feet with increased frequency and intensity while on this trial. The ropinirole I had been taking was considered the standard for this sort of cramping, and it had been working pretty well up until basically last week when not only did the pain begin to increase again, but I started getting the cramps in my hands, too. As soon as it was clear the cramps were disrupting my sleep again and actually getting worse all of a sudden, I sent a quick email to my oncologist and had a new option ready within the day.

Ropinirole is essentially a drug used to control muscle spasms associated with Parkinson’s disease, but we have swapped it over for a muscle relaxer commonly used to treat patients with spinal cord injuries. This new one, baclofen, seems to be working well so far. I’m pleased about that. But it is also keeping me wide awake for a couple hours after I take it, in spite of supposedly being a sedative. I’m sure I will get the timing worked out within the next few days. At least I have been awake because I have been awake, and not because I have been squirming in pain while trying not to scream. That is a pretty decent trade-off.

Thin Skin, Thick Scabs, Three Scans

Today, almost within 24 hours of week four’s conclusion, I have been sitting at my desk trying to avoid scratching my head or jaw. It is nearly 80 degrees in the house, yet I am wearing a sweatshirt. My oncologist hinted in our last email exchange that he would consider lowering my dose again, which I appreciate, and it gives me more confidence that I will be able to maintain this medication for a longer period. Which I definitely want to do, especially after reviewing the images from my last three scans.

It took me a long time to get around to looking at the scans side by side, from the largest my tumor has ever been (in the scan just prior to starting on poziotinib) to the crazy reduction in size at four weeks and the even more astounding reduction at eight weeks. I will not have any imaging done when I go in next, just a physical exam and blood tests to ensure that I can stay on the medication. But four more weeks down the line I am due for another visit to the CT scanner.

The real remaining question, before I get to that next scan, is whether my reduced dose has been as effective as the original dose. I had taken two weeks off entirely between week eight and the start of my third cycle, 2mg lower than the previous dose. While I hope there was still medication circulating in my system, stifling any potential tumor expansion, I do not really know whether that time was a setback for my treatment, or how effective the lower dose has been in potentially compensating for that possibility. All I do know is that these more recent weeks have been slightly easier to tolerate and I desperately want to know that everything is still working well for the treatment.

So Many Selfies

For the time being, all I have to go on are the images I have been (perhaps obsessively) collecting to chronicle my progress. Below are some galleries that show the somewhat graphic progress of the past three weeks. I would have liked to have typed more for this post, but my fingers (as you will see from some of the later images) are a bit on the sensitive side right now. Besides, if a picture is worth a thousand words, then this could easily qualify as one of the longest entries in the entire blog…

A word about the galleries is in order. Some of the images may not display properly in the slideshow view, but there is always a link in the bottom right corner to view full size, which ought to open the frighteningly large images properly in a new tab. If you really want to get into the nitty-gritty, that is the way to go.  😉

Images from Week Two:

#gallery-0-16 { margin: auto; } #gallery-0-16 .gallery-item { float: left; margin-top: 10px; text-align: center; width: 33%; } #gallery-0-16 img { border: 2px solid #cfcfcf; } #gallery-0-16 .gallery-caption { margin-left: 0; } /* see gallery_shortcode() in wp-includes/media.php */

Not part of a murder scene, just the way my pillow looks in the morning.

Still not part of a murder scene… My pillow cases can get pretty gross.

Scabs, scabs, nothing but scabs. And hair. And flaky bits of scalp.

  Images from Week Three:

#gallery-0-17 { margin: auto; } #gallery-0-17 .gallery-item { float: left; margin-top: 10px; text-align: center; width: 33%; } #gallery-0-17 img { border: 2px solid #cfcfcf; } #gallery-0-17 .gallery-caption { margin-left: 0; } /* see gallery_shortcode() in wp-includes/media.php */

Images from Week Four:

#gallery-0-18 { margin: auto; } #gallery-0-18 .gallery-item { float: left; margin-top: 10px; text-align: center; width: 33%; } #gallery-0-18 img { border: 2px solid #cfcfcf; } #gallery-0-18 .gallery-caption { margin-left: 0; } /* see gallery_shortcode() in wp-includes/media.php */

Those scan images I was talking about from four weeks ago:

#gallery-0-19 { margin: auto; } #gallery-0-19 .gallery-item { float: left; margin-top: 10px; text-align: center; width: 33%; } #gallery-0-19 img { border: 2px solid #cfcfcf; } #gallery-0-19 .gallery-caption { margin-left: 0; } /* see gallery_shortcode() in wp-includes/media.php */

For comparison, here are images of my pre-trial scan (the messy looking one on the bottom of each slide) and the scan from after the first four weeks. It’s a pretty massive difference, especially when you consider the overall clarity of the lungs now in addition to the reduction in tumor size.

#gallery-0-20 { margin: auto; } #gallery-0-20 .gallery-item { float: left; margin-top: 10px; text-align: center; width: 33%; } #gallery-0-20 img { border: 2px solid #cfcfcf; } #gallery-0-20 .gallery-caption { margin-left: 0; } /* see gallery_shortcode() in wp-includes/media.php */

And lastly, because I certainly appreciate a bit of levity (and you sure deserve it for sifting through all those images above), here is a shot of a page from an instructional packet I received the other day while taking a refresher course on CPR and first aid. This was from a section on how to spot a concussion, and it had me wondering if maybe I’ve been treating the wrong condition all along! After all, I have had all 21 of the identifiable symptoms of a concussion for the past four years now…

Indications of cancer or symptoms of a concussion — you be the judge! #SelfDiagnosis #GoodThingImNotADoctor

    If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on Twitter, Facebook, Tumbler and many other fancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)

Thank you!

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.

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August Self-Care Challenge: Making Time to Laugh

August Self-Care Challenge: Making Time to Laugh

Each month lately, I have been posting an easy to achieve (but still important) self-care challenge for my readers. And for myself, really; these are all issues that I need to be working on for my own well-being. Self-care is an essential component of any patient’s treatment process and should be an essential component of life in general, whether or not you are going through physical or emotional…

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[jpoehlmann]

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.

I had plenty of time to think about options. And I knew that chemo was never going to be a permanent part of my life. There had been the hope, however, that it would keep things more or less static for a much longer time. I’m not a fan of hope — it always lets you down in the end, sometimes viciously; I far prefer a simple, pragmatic approach to my future. But hope sneaks in, lodges itself where you weren’t looking, and waits to insinuate itself in your private thoughts while you aren’t paying attention. Then you have a scan that clearly shows a shift in the primary tumor, a dramatic enough change in shape that it would be silly to even consider prolonging the current treatment, and all bets are off as talk of new biopsies and possible drugs begin to swirl through the air. No matter how prepared I thought I had been for that moment, I failed to consider hope mucking up the works.

Still, there were options — and they all sounded good. Or at least passable. A liquid biopsy — essentially just a small blood sample sent off to a lab — offered up a newly targetable mutation. And we went for it. A couple of times. And had no real success. Then there was this clinical trial I am currently on, and there was clear improvement in my lungs. By “clear,” I actually mean “clear,” too: previous to this new drug, the cancer in my lungs had been branching out, cloaking the tissue in what almost looked like a black widow’s web. My latest CT scan was the clearest one I have seen since my diagnosis.

So when I say that it was effectively killing the cancer within me, I mean it, and the statement means something to me. Something very special. Something that has made me ready to dive right back into the acid bath that was my first eight week experience, though with the hope that I’ve built up some level of tolerance and that the acid might have been slightly neutralized by knocking a couple of milligrams off my dose.

Here I am on day seven, only one week, and the rash is clearly running the same basic course that it did before. My scalp hurts, albeit probably a little less. I’m glad that I had the foresight to chop off my hair and shave before the rash had a chance to return. Even so, my short little hairs on top of my head are already weirdly wiry and stiff, the texture that contributed to a lot of the pain I had before. Rubbing up against them, they poke right back into my scalp like little needles, which does not bode well for pleasant sleeping regardless of the supposed comfiness promised by my pillow. Still, having much less of that hair to contend with, and almost nothing left of my beard, has already paid off.

Being proactive with the creams and oils and gels and lotions and drops and sprays and whatever else I have amassed on my bathroom shelf is also helping… I think. It is a bit early to tell, but so far I am managing to maintain more of my actual skin color and I do not itch nearly as much as I feared I might. Time will tell, of course, and the rash is marching on.

It only took six days to really begin erupting. Last night I realized that I needed to cover my pillowcase with an old T-shirt again, just in case. And I woke up with spots of blood and pus all over where my scalp had pressed into it. Scabbing had begun in earnest, already crusty when I went in to wash the sleep from my face. And the warm water I splashed cut up against my skin like little razors doused in lemon juice. But it was a quick sensation, over by the time I blotted the moisture away with a clean towel. And that towel then quickly thrown in the next load of laundry.

Today, I am oozing. Tomorrow, I am likely to be dry and scaly, or oozing some more, or, if I am lucky, something in between. My skin is still soft, and I will try to keep it that way. But more than any of that I am simply holding out that old demon, hope, once again, that the scientific miracle I witnessed on those last two scans will be repeated again.

And now, my week in pictures:

The day before I restarted treatment. Look at that acne-free face!

The beginning of day four, signs of the rash.

Still the beginning of day four.

My 14mg dose of poziotinib, and 4mg of loperamide (to slow things down).

Day five, with glasses.

Day five, with a little sign.

My head on day five.

My head on day five.

My head on day five.

My head on day five.

Day six.

Day six.

Day six.

Good morning, day seven!

Good morning, day seven!

Source of the imprints on the pillow covering.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

Day seven.

  If this post resonates with you, please consider supporting my work through a monthly subscription to my feed on Patreon, or a one-time donation through PayPal. Follow me on Twitter, Facebook, Tumbler and many other fancy social sites or apps. Please share my posts to groups you are involved with on Reddit or Google+ or anywhere else that you feel it will help or enlighten or inspire another reader. (Sharing buttons are below the post!)

Thank you!

Week One: The Oozing Begins I am now into the third month of my clinical trial for poziotinib. After the first two months…

[jpoehlmann]

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.

Let It Bleed — My Skin Has Never Been Thinner

My t-shirts are all dotted with spots of dry blood. My fingertips are split and refuse to heal quickly. When I wash my face, it looks like I scrubbed with barbed wire. Three-plus years of cancer treatment has left me a bit raw.

I wrote those words several months ago, in what seems like another life. The drug I had been taking affected epidural cells and caused a rash that covered my body in acne. It was my first “targeted” therapy and the first treatment to follow my chemotherapy. At the time, I did not realize that treatment was not working — nor did I anticipate that the rash I was describing would be so totally eclipsed by the one I have now. The flip side now is that, while the rash I just endured for eight weeks has been far more viscerally gruesome and painful, the treatment has also offered clear benefits far exceeding any of the protocols used to this point.

Hindsight is always interesting. I recall thinking how horrible my afatinib rash was back in the waning months of last year. Now it seems quaint, the way it came in spots, slowly spreading, and offered its meager challenges in management and mitigation. My dermatologist did her best, offering a range of medicated salves, antibiotic ointments, and even an anti-fungal shampoo, all in an attempt at navigating uncharted territory. Some of it paid off, too; my afatinib-induced rash faded, became more manageable, and quickly vanished once we realized that treatment had failed and the pills were stopped.

By the time I had gone through a second failed targeted therapy and jumped through the hoops for my current clinical trial, my cancer had grown considerably. Not only had the primary tumor increased dramatically in size, but there had been substantial spread in my left lung (and presumably throughout the body). I was ready, determined even, to hit the cancer hard with my treatment. Agreeing to the maximum available dose appeared like the logical choice. After all, I was still relatively healthy and in good shape, in spite of my recent weight loss brought on by radiation and the stomach flu. I was ready and determined to take whatever they were able to give me. But I wasn’t really prepared for that rash.

What If?

I have already described how painful and hideous the first month was on my treatment of poziotinib. But this was balanced by the drug’s efficacy, offering me the first, unwelcome taste of that demon, Hope.

I began to think, what if I could stay on this drug? What if it can kill the cancer entirely, keep it away, maybe even… cure me? What if?

Then, of course, the second month of treatment was every bit as difficult as the first. In different ways, it took its toll. The rash slowly stabilized, at least insofar as it was less painful and more predictable, but it continued to spread. The itching was still crazy — I was going through a pound of skin cream every week in addition to various lotions, oils, and a steroid gel. It seemed borderline insane to spend an hour of my day moisturizing my body, but that was what I was doing.

My body was also fighting the rash consistently, burning all my excess calories, and I continued to lose weight. Touching my skin, it felt hot, but giving off all that heat made me chilly even on a hot, summer day. Every day, I would try to eat extra, but it seemed like I was dieting. Later, there would be nausea, too; vomiting from the combination of drugs I was taking, and adjustments to make everything work. But at first, the loss was strictly tied to the fact that the skin, being the body’s biggest organ, was just using up the most energy.

My hair and scalp no longer hurt so much, but the scabbing and itching was giving way to a heavy amount of fall-out. Even my beard was beginning to thin as the hairs would scrape away with the crystalized gunk accumulating around the follicles. And those “what-ifs” spurned by Hope were giving way to the “what-ifs” of failure to maintain the treatment. What if I could not continue doing this? What if I stop and the cancer grows back more quickly than ever? What if there is nothing that will ever be this effective again? These are nasty thoughts, but they haunt me when I look in the mirror. Even now, after two weeks of rest to reduce the rash.

Reassessed

When I went in for my eight-week checkup, it was clear that I was suffering too much from the rash. Even with the antibiotic, I was taking to mitigate its effects, it was covering me from head to toe, and I was in constant discomfort. My oncologist took one look at the extent of the spread and said I had suffered too much and needed a break.

I also had this unexpected development of frequent night cramping in my legs. I have had this on occasion as long as I can remember, waking in the night every so often with a cramp in my arch or my calf, massaging it out and going back to sleep. And I have had restless legs for years, too. But suddenly, I was waking in excruciating pain, one or both legs cramping up at the same time, both the calf and shin, the ankle, the arch of my foot, even my toes.

The joints would twist, the muscles would seize, and I would hold back tears or a scream and try to wait it out. Five minutes. Ten minutes. Two or three times a night. Four, five, even six nights a week. I was put on ropinirole, a drug for Parkinson’s disease and restless leg syndrome; it took a couple of nights to kick in, but it made it possible to sleep again.  It also made me nauseous, even more so when combined with the antibiotic I took to fend off the acne. But most of that would be dealt with over the course of my break. Two weeks.

During that time, the rash did begin to clear up. It went from a “stage 3” (really, really bad) to a “stage 1” (not so bad). But I also developed a persistent and increasing cough that was leaving me short of breath and even more tired than before. It has been determined, at least for now, that it is caused by sinusitis — my consistently dripping nose — and is being treated accordingly, with new antibiotics. And while I do that, back into the breach I go.

At least we are doing it with a dose reduction. The dosing in this trial is being done in increments, and I’m knocking down from the maximum of 16mg to the next tier of 14mg, hoping that the small difference in dose translates to a large difference in the persistence of the rash. And then we are back into a monthly routine, taking my daily pills and getting reassessed as we go.

And the lesson of this tale is…

But I skipped the best part of the story, the reason that I am continuing after my two-week break. After the first four weeks, there had been a marked reduction in tumor size, easily on par with or exceeding the initial three-month blast of chemotherapy I completed back in 2015 before going into my long maintenance run on Alimta.

The second four weeks of poziotinib, enduring the rash and all, resulted in an even more amazing continuation of that reduction. While I don’t have a picture of it this time, the tumor was dramatically smaller and had begun to peel away from the chest wall where it had been previously attached. Now, it is a fraction of the size from the last scan — still present, but greatly diminished. And the rest of the lungs look more clear than I have seen them in years.

It’s ironic, I suppose, that the majority of my hair-loss has occurred during the two-week hiatus I took from treatment to clear out the rash. I expect that I’ll continue losing more now that I am re-starting the program, even at the reduced dose. But it feels strangely right, maybe because of the summer heat, maybe because I’ve just been getting used to the feel of my scalp, and it certainly is a small concession to make for such promise.

Enjoy the gallery of images from my second month of treatment!

This was when my toes still looked good… But I did have to stop wearing closed-toe shoes.

It seemed like it was healing.

The typical result of combing my hair.

Scalp!

This is what my lap and desk look like when I scratch my chin.

The chin after being scratched.

Near empty one pound tub of skin cream.

Oh, bloody scalp!

The mustache becomes patchier and patchier.

Where is all the hair going?

Ahhh, the hair was going down the sink.

This is mostly my skin and hair from under my desk.

And this is mostly my hair and skin from the bathroom floor.

Combing again…

The hair continues to thin.

But it is growing back slowly on my hand.

And growing back slowly on my fingers.

Time to just get a trim.

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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.

[jpoehlmann]

Self-Care Challenge #4: Keeping It Together

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…

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