Heads up! My battle with actinic keratosis!

23 days into treatment, if this picture creeps you out, just wait for the rest!

NOTE – This post was originally on my personal blog back in 2012. I was writing a regular humor column for my local paper and had started putting my columns on my blog, so I decided to use that platform to walk people through my experience in having topical chemotherapy done on my head for a pre-cancerous condition called Actinic Keratosis. This post has continued to get thousands of views monthly over the years without any effort on my part. At the time that I wrote this, I could only find one other person who wrote about his experience, and I know that I was looking everywhere to try and see what I was getting myself into. It’s now 2018, and I still go back from time to time and have little patches of actinic keratosis burned off, but I do believe that it’s time to see about another round of the topic chemotherapy cream as the number of little patches are beginning to increase. So enjoy this post, and these pictures that, when people decide to google me, often come up first, which makes for a great conversation starter!

 

I’ve been sitting on this one for a few months. I just kept going back to it to add more info. It’s been 5 months since I went through the treatment for actinic keratosis, but I still wanted to get this out there. For anyone going through the treatment, it’s pretty intense, and I found myself googling about what was going to happen next almost daily. So with that said, I wanted to get this out there for others, and to be a reminder to myself to always wear sunscreen!

There are several lines that a bald man throws into his repertoire such as: “God only made a few perfect heads, on the rest he placed hair,” or “Better a bald head than no head at all,” or I once read a quote by Larry David that said, “Anyone can be confident with a full head of hair, but a confident bald man – there’s your diamond in the rough!” And before I segue into the topic of this tome, let me throw out the poem I found long ago when looking up quotes about the loss of ones locks…

Babies haven’t any hair:

Old men’s heads are just as bare;

From the cradle to the grave

Lies a haircut and a shave.

~Samuel Goodman Hoffenstein

And I once saw a shirt on a bald man that simply said, “Solar Collector.” Perhaps that’s the best way to jump into the topic of my writing today as the damage of which I write was no doubt done in the years in my youth, according to my dermatologist, primarily from the my toddler years until possibly my early 30’s, when I finally wised up and embraced sunscreen (or sunscream as at least 2 or 3 of my kids referred to it and to which I still call it even though nobody has acknowledged my misspeaking for several years now). Yes, I’m talking about sun damage to my dome, my bean, my cap, my head.

A few years ago I wrote about my first trip to a dermatologist. The article in the LincolnNewsmessenger was one of my most commented on at the time. It seemed everywhere I went somebody wanted to tell me about their experiences with dermatologists or chastise me if I wasn’t wearing a hat. I came to know the phrase “actinic keratosis” extremely well. For those of you not aware, according to the USNational Library of Medicine, Actinic Keratosis, aka “solar keratosis” are defined as “small, rough, raised area(s) found on skin that has been in the sun for a long period of time.” The next paragraph is the kicker…

Some actinic keratosis may develop into a type of skin cancer.

Gulp!

My dermatologist, and many on the web, refer to these little dry beauties as “pre-cancerous” and that’s enough to get me to take notice.

I’ve run in the Relay for Life for cancer survivors, I’ve donated for several years to the American Cancer Society, but I’ve never really put the words “cancer” and “me” in the same sentence, even if there was the word “pre” in front of the word “cancer!” I’ve had SO MANY of these “small, rough, raised areas” burned off the top of my head, it just seems like a never-ending battle, and that freaks me out!

So after that first trip to get over 20 of the patches of dry skin burned off with liquid nitrogen, I was told that I should come in yearly. The only problem was that just a few months after a treatment, I’d have more and more patches cropping up all over my head and face. So my treatments were starting to happen every 8 or 9 months.

Now let me back up a step. Even in the definition above is says that these happen on skin that has been in the sun for a long period of time. But let me be clear, this isn’t a case of falling asleep by the pool and then waking up to find your body riddled with actinic karatoses, this is a case of growing up at a time, just a tad bit early, to take sunscream seriously, combined with fair skin AND a lack of thick, bushy hair. Actually, back to the web, the first line under “Causes, incidence, and risk factors” says that you are more likely to develop this if you “Have fair skin (check!), blue or green eyes (check!), or blond or red hair (check!).”

Let’s be honest, I grew up not just in a time when sunscream was a yawn, I grew up in a time when baby oil was kept in the beach bag and rubbed on oneself to try and collect as much sun as one possibly could. Throw in there growing up in Utah, thin air, AND having olive complected friends who liked to go up to the snow in the winter and create a small solar dugout to lay in so that the sun will reflect the rays on every side, and, well, I was destined to be writing this article. After several, and I’m talking SEVERAL burns during mid-to-late spring, I could actually get my fair-skinned body to tan. But it took work, a lot of work, and, well, I’ve always been a hard worker. Well, actually once when my friend Trent got he and I a job in high school ripping up carpet from his uncle Tom’s GIGANTIC warehouse I wasn’t such a good worker. Neither one of us was. We lasted a couple of hours and ended up walking to a McDonald’s and hiding out the rest of the day. But that’s a story for a different day.

Actually I could go on. Let’s see, there’s my first car, a Jeep, constantly with the top off. A brief period with a Nissan Sentra followed by a Mazda RX-7 with a sunroof , then a Toyota Celica with a sunroof, and then a SAAB with, you guessed it, a sunroof! Now I’m back to a Jeep, but a Commander, no sunroof, but it’s a little too late. I used to love tanning my (at that time) balding head well into my early 30’s. I would drive from Sacramento to the bay area and back regularly and keep the sunroof open the entire day, relishing that tan by mid-summer after a few burnings, and peelings. While I’m confessing, I also used to buy sun in and spray my hair and use a blow dryer to get it even more blond, and I once ate an entire box of Famous Amos chocolate chip cookies while sitting in my hotel room on a business trip…OK, not sure what that had to do with actinic keratosis but, well, sometimes a confession just feels right.

So I was content to keep going to the dermatologist and getting some 15 to 20 spots burned off every 9 months or so. Two visits ago I finally admitted to my dermatologist that I had crummy insurance, and that each time I went in it was pretty pricey. I think I had probably read something online telling me to mention this, and that Dr.’s would often give you a cash discount, or just flat out take pity on you. He did, at first, and he told me I only owed him $50 payable up front. The rest of the bill came by mail, but for a month at least I thought I had a deal!

The last time I went in, just after the Lake Tahoe 100 miler in July, getting the spots burned off causes a bit of pain and a week or two of scabbing, so I thought I’d save myself a little bit of the pain I often feel trying to run while scabby and I’d do it while recovering from a nice, 100 mile run. At that appointment, Dr. Bass told me that I might want to think about a “chemical chemotherapy” treatment at some point in the future. He told me that the cream was expensive (try $275 a tube!) but that if done correctly one might not need to return for a few years! I was in…and then he told me about the treatment. He said that it wasn’t pretty, that it took a few weeks and it could be painful, itchy, etc. I filed it in my then-scabbed head and left the office.

Let me be clear, once those scabs heal, there is typically a period of a few months where, as a guy who shaves his head a couple of times a week, it’s pure joy! At those times, my head becomes cue-ball like, pristine, SMOOTH and it’s wonderful. If you catch me during one of these times I’ll encourage you to give my head a rub, which my wife has since told me is pretty creepy. Well, after this treatment in July / early August, I was feeling a rather large dry patch right on the top of my forehead by October or early November. I couldn’t wait until summer (I can’t lie, I’m noticing more and more OCD-like tendencies in my advancing age. Every time I shaved my head I worried about cutting this particular patch), so I called Dermatology Consultants of Sacramento (Dr. Bass) and set up an appointment to go in and get the cream. The advice nurse, when setting up the appointment, suggested I wait until after Christmas. “You don’t want to be in all those holiday pictures looking like that!” she said. I really didn’t know what she was talking about, and I was a bit persistent telling her I’d rather just get it over with, but she eventually talked me into waiting until January 3rd to go in.

I can honestly say I didn’t think about it again, and when January hit, we had a pretty important  work meeting with a new start up I’m trying to get off the ground on the 3rd so I almost cancelled my appointment in order to prepare. But I decided to go ahead and get the prescription for the cream at the very least and after a quick call attempting to get it over the phone on the 2nd, I was told that I definitely needed to come in to see the Dr.

During my appointment, Dr. Bass told me what to expect those first few days. He said to apply a dime sized drop into the palm of my hand, and then take small dots of the cream on a finger and cover my head, and then rub those smaller dots into my scalp twice a day (washing my head before the 2nd application). The cream was called Fluorouracil, and a quick Google search showed that it contained the drug fluorouracil, an active ingredient in chemotherapy medication typically administered via IV. This was the real deal! Dr. Bass said that it went to work on the pre-cancerous cells and attacked them at the cellular level, killing them, and that I could expect to see a series of red dots where the cream found the sun damaged cells. Any area of my skin not containing these cells would have no reaction to the cream. After a slight delay at the pharmacy (the pharmacist couldn’t fully read the prescription, asking me if I needed anything added to the cream? I have to say here that I said, “Sure, how about a little Rogaine mixed with some Miracle Grow” but it played to no laughs in the Target pharmacy). I started the cream on Wednesday, January 4, 2012 in the evening. I was to wash my head and then apply. I gave my head one final shave that morning so the first applications were easy. In my mind, my head burned a bit, but I don’t know if that was simply in my head, or if there was indeed a little irritation?

I took a picture, I guess you can call it before. You can just see my big old watermelon sized head with not much going on. I proceeded to take pictures over the next three weeks. I hope you haven’t eaten, it’s pretty crazy what’s about to go down. And can I just say that I’ve never been a huge fan of my looks, I know I’m not a heart throb, but looking at pictures of my big bald head is not a big ego boost, so take these photos for the spirit for which they are intended…for medical purposes only, and I’m sure some wiseguy will download one off of Google Images some day and use it as a reason to GET hair plugs!

I could go on, and on, and on about the last three weeks. Let me just throw out some random thoughts so that I can at least get this up on the web. Why do I want it on the web? To help others, I am so serious about that. You become OBSESSED with what is going to happen? What am I going to look like? How long does it last, does it hurt? I started Googling actinic keratosis and fluorouracil and found a couple of blogs where people posted about their experience and it was INSANE how many people admitted to being consumed by it, just wanting to know. And I was 100% right there onboard with them. Your head, skin, changed daily! Did it hurt? Unfortunately yeah, the first two weeks you kind of think it’s painful but that third week, man, if I was some sort of smart math-guy I’d come up with a formula that basically showed that I hit a point at around 15 days that it sort of became exponentially worse each day from 15 to 21. I’m writing this at day 23 (now editing before posting at day 27…HA! How about posting on May 20 somethingth?). I’m sitting at work with my head shaved (finally! I went 3 weeks without shaving my head, I had never gone a week without it in 10 years!) and my forehead and top of my head COVERED in Aquaphor. I’ve been told that for the next week I need to keep it coated and that I’m about to get scaly and peely. After that, I’m looking at another week or two of redness and then I’ll be as good as new. Dr. Bass gave me a little side-benefit by telling me that I will essentially appear like I’ve had a chemical peel when all is said and done and that my skin will be fantastic!

But for right now, while the Aquaphor feels great, I look like I’m wearing a mask, and it goes down lower than my hat can cover. I have stuff all weekend that would require me going without a hat, and I’m admittedly more self-conscious about it than I thought I would be. Perhaps more on that in future posts. But if you are contemplating doing the treatment, if you’ve just started, I can already say “HANG IN THERE!” I’m on the downhill slope and I’m very, very ready for this to be done, but as Dr. Bass shared with me yesterday, all of the red on my head is where the actinic keratosis was, and that at some point it would need to be addressed. Hopefully this will keep me away from the liquid nitrogen tank for a few years.

UPDATE –

All of what I previously wrote I wrote on a Thursday afternoon heading into a weekend (by way of Friday, don’t get me wrong). I survived the weekend, including a couple of church meetings where I dressed myself up all nice, and then headed out with my mask on (meaning my red, scabby self), and yes, I got the ignores, as well as the “is that a sunburn?” and the flat out “what happened to your head?”

I’m telling you, and I mean this as no indication of “I know how it feels” to anyone who has any type of birthmark, scarring, burns, etc., over their face, but I truly felt more empathy for people that I saw that had any of these things. On Friday night I passed a guy that had a “wine stain” on his eye (hey, imagine the google hits this will get now for people looking to clean a stubborn wine stain!), I saw him coming and I almost found myself taking my hat off sort of to say, “yeah, I have stuff, too!” The tough part is the couple of times I went to church when it was in it’s full blown scab phase. Three or four times that I can remember I caught little kids staring at me. They don’t know any different, I know that, but you find yourself a bit self-conscious. Admittedly I knew that my “look” would eventually return to normal…to my bald, watermelon sized head normal, but normal nonetheless.

It’s Tuesday now, the redness is fading, the pain left a couple of days ago and now I’m just dealing with itching. I’m still wearing a hat in public, still more vanity than I care to admit. I ran 15 miles Saturday, 7 on Monday and did an 11 mile speed workout today. The first 15 minutes are itchy, kind of insanely itchy, and then once it calms down it’s no problem at all. I’m happy about that (over the last couple of weeks we’ve held a couple of meetings about my upcoming 24 hour run and 5k, mark it on your calendar now, May 4-5 and sign up to run the 5k! Wait, the reason I mentioned that was because I in full on panic mode that I’m not running enough right now to adequately prepare for a nice 24 hour / 120 mile run! And if you made it here directly from another blog, run completed! 122 miles in 24 hours, check it out!).

That chemical peel comment I made earlier…man, it’s starting to show a bit. The skin on my forehead, while indeed still red, looks different. It’s kind of hard to describe. It appears pretty smooth compared to maybe the skin on my cheeks (the cheeks on my face, let me be clear). Not a bad side benefit at all.

So at this point, a mere month tomorrow, I’m finally easing into the “I’m so glad that I did this” mode…but admittedly I’m not really too excited to start the treatment on my cheeks (face cheeks!).

Yet another update! Well, it’s been MONTHS since I completed the treatment and I’m finally posting about my experience. I still have the nice skin from the “chemical peel” but I have noticed the first return of the actinic keratosis! I’m bummed, but my dermatologist told me in my follow up appointment that this procedure allowed us to “get on top of it” but sure enough, he scheduled me for another appointment around my birthday in November. I still need to do my face, I have a tube of unopened cream. I think I’ll start that in late September after I run the Wasatch 100 mile run in Utah…unless I can come up with an excuse to put it off at that point. If you’re about to go through with the procedure, good luck! It’s well worth it, you do get better, and the benefits are obviously well worth a few weeks of looking, well, rather unique!

Here’s a nice progression of pictures from the start to the finish. Put down your breakfast, and yes, thank goodness my wife is in for the long haul!

The before! Sort of, this picture was a couple of days in, around January 5th. And yes, it almost looks alien-like in size!
January 14th, not sure where all the pictures went from the 5th through the 14th but you can see that not much was happening yet. Lighting was pretty crummy I’m afraid.
January 16th, here we go! Plus you can now see why I shave my head. Check out those “devil horns” of hair that come in if I let it go!
January 22nd, at this point I’m pretty much just hiding behind hats out in public. But check out that bit that’s running down my nose, couldn’t quite hide that.
This is where I’m glad that my wife doesn’t read my blog. Notice the laundry hanging in the doorway. Admittedly I don’t take a lot of shots of myself with a phone camera to post on my facebook account 🙂 This is from January 24.
This is when I was pretty much all scabs, January 26th or 3 weeks in. I’m kind of kicking myself that I didn’t take any afterward to show how quickly the scabs went away. Unfortunately the scabs go, but the red stays for another 2-3 weeks. It just looked like I had an odd sunburn…with glorious “new skin” underneath however!

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