My Melanoma Experience

November 6, 2019

If we’ve ever spent time together face to face or if you’ve ever seen a close up photo of my face or zoomed in super close on a not close up of my face you may have noticed that I had a sun spot underneath my left eye. A freckle or two. A distinguishing mark for an aging gentleman.

Astute viewers looking at photos and videos from before 2013 might notice that the mark doesn’t exist. That it appeared from the dermal ether sometime in 2013 or 2014. When it first appeared way back then I scheduled an appointment with my dermatologist who said it was nothing to worry about, but something to keep an eye on (no pun intended). She then froze the skin and off it went and I returned to a less distinguished face.

And in fact some people noticed its disappearance with a touch of the sadness. Why would I go and have it removed when it was a petite bit of flair to separate me from others? Well, truthfully? I was a little self-conscious of it. It was something of an uninvited guest and I wasn’t sure I wanted it there.

As more summers came and went and I dutifully tended to the weeds and the dirt in my garden, the determined little sun spot, like the Hosta along the perimeter of my yard, emerged again, grander than before. And maybe because I’m lazy or not as vain as I once was or susceptible to the peer pressure of others about the potential coolness of the sun spot, I made peace with it.

However, earlier this year I scheduled a trip to the dermatologist for a few reasons and when I finally got in to see her, almost as an afterthought, we decided to take a closer look at what had become.

She still didn’t think it was a big deal, but suggested that maybe we should do a biopsy on it. However, your boy Ben, still clinging to some vanity decided that it wasn’t necessary because I also had an appointment with a new dentist that day and I didn’t want to go into the new dentist’s office bleeding from my face. I worried that the dentist might think there was something wrong with me. There, I said it. It’s fucking stupid, but that’s what I was thinking.

A few days later I rethought it all and wondered if maybe that wasn’t a bit shortsighted and maybe it would be better to just let the dermatologist do what she needed to do. So I called her office and asked to set up an appointment, the first of which wasn’t available until months later.

And all the while, I felt a nagging inside me.

Nagging while I played in the garden, nagging while I went on long walks in the middle of the day, nagging while I crisscrossed Barcelona in August. Nagging. Nagging. Nagging. I probably did a better job, which isn’t saying much, of putting on sunscreen and wearing a hat, and maybe the voice got quieter, but it never stopped whispering.

When I went in for the biopsy at the end of October the dermatologist told me that it was good for precautionary purposes, but that she wasn’t too worried about it. Her assistant put a topical numbing agent over the skin, she made a quick slice, and within minutes it was bandaged up and we were joking around about one thing or another.

I’m guessing it’s nothing and that I’ll put a note in your chart early next week to let you know everything is okay.

But then the phone rang four days later and I knew that wasn’t a good sign.

Glad you came in. Turns out you’ve got melanoma.

(There’s a whole lot I’ll write about one day once I understand things. In the days leading up to the biopsy and the immediate days that followed my brain did some really really weird things. This was all before I’d even heard the results of the biopsy. I won’t get into the particulars here, but one day I will. UPDATE 12/30/2019 – I wrote about it here.)

Anyway, I had some pretty rough days and nights at the beginning of this month. Existential questions. Fear. Racing brain. I’m not going to pretend I won’t have more. But I have been absolutely blessed to have people at my side through all of it.

As it turns out (though I didn’t know it for a few days) the melanoma is stage zero so it was caught very early. It had spread across the skin, but not down into things. That’s the good news. I’ve got two surgeries set up for early December to have it all cut out.

The less good news is that because of how close it is to my eyelid, closing the wound may be a little tricky. I’ve got a date with an ocular plastic surgeon a few days before Christmas, so if you’ve got spare wishes that you don’t know what to do with, I’ll gladly hang a stocking on your fireplace. 

I’m being cautious with my language because I know what happens when you tempt the universe, but in general there are a lot of positive factors at play here and I feel confident in the plan and the folks with the scalpels. I still spin out more than I’d like. I haven’t really figured out what to think or even what I think. I’m processing what to say if I should say anything at all. Sometimes it’s hard to know.

What I do know is that I’ll have a new scar and when you see me in the sun, I’ll likely be wearing a floppy hat from this point forward. And I’ll wear them both proudly even when seeing a new dentist. To sum up – please take care of yourselves, wear sunscreen, and know that I love you very much.

December 9, 2019

Last Friday (12/6) I went in for my first round of Mohs surgery to have the cancer cut from my face. The hope is that I’ll only have to go in once, but, depending on what comes back from the lab in the next few days, I may have to go in again this Friday for a second round.

Anyway, I am very impressed with the doctor and medical team that performed the procedure. Obviously, I don’t have any real way of evaluating these things because this is the first time I’ve had to exist in this realm, but they were reassuring and communicative and having an idea of what’s going to happen is better for me than not knowing.

That said, I didn’t actually know what to expect beyond the fact that it was going to be like when I went in for the initial biopsy. During the original biopsy my dermatologist took a thin layer of skin from my upper cheek/below my left eye. I had to wear a bandage for a few days and it bled a little while I slept some nights. But for the most part? No big deal. I didn’t even take Tylenol for it.

So I assumed that when I was told the procedure would be similar, the outcome would be similar.

LOL.

As a heads up – know that some of what I’m going to be writing about is graphic, but I have turned it WAY down. I’m also going to provide a link for the pictures, but will not embed them in here. They are…gnarly. With the exception of my friends in the medical arena I have asked everybody who has seen them if they would like to see them before sending because your boy Ben is not looking his best.

Back to the procedure.

The good news was that I had the aforementioned medical folks on hand and I felt comfortable with them. I was also allowed to listen to music while the procedure was taking place. I was listening to RVIVR’s Breathe In and Change on Me because those songs are like light and adrenaline in my blood. In fact I was totally okay even when they were putting the grounding bracelet on my ankle.

Oh, the grounding bracelet? That’s because to cauterize the blood vessels they cut into they used some electric wizard wand to burn them all shut. This is a smell I won’t soon forget.

There was essentially no pain during the procedure itself (and since then I haven’t taken anything but Tylenol).

The only thing that was shocking to me was how much of my face they took with them. I guess that’s the necessary thing when you’re trying to get all the cancer, so I can’t really complain. But during the procedure when possible I took pictures of what was going on, when they were done, one of the assistants asked if I’d like a picture of the wound. I told her I would, but that I didn’t want to see it. So she snapped it and that was that. They bandaged me up, I walked into the waiting room to meet my ride home, and off we went.

It wasn’t until I took a picture of my bandaged face to text to friends that I saw the other pics. Uh. You guys. That was my face.

For the most part I’m doing okay right now. Physically, besides bandage positioning tapping against my lower eyelashes, I’m not hurting. I can’t do anything to exert any energy (though I’ve gone on walks the last two days).

The biggest challenges right now are (1) waiting to find out if I have to go in for round two on this Friday, (2) worrying that if I do have to go in for round two, I’ll have to go in for a round three, and (3) wondering just how in the hell the plastic surgeon is going to put things back together. In theory I should let go of the worry because it’s out of my hands, but that’s easier said than done.

I am so blessed to have great people around me to stop me from spinning out. Thank you for your texts and calls. You’re a fine lot of people and I am so glad you’re in my life. Extra special thanks to RVIVR, my dad and to Käri who have confronted some of the grossness that I haven’t even been able to stare down quite yet.

As I mentioned before—please wear your sunscreen and take care of yourself. The world is a richer place for you being in it and I look forward to seeing you at some point down the road.

Love Yr Pal, Ben

December 13, 2019

As of the last writing I was still waiting to find out if I had to go back in for a second Mohs surgery (to remove cancer). If you looked at last week’s pictures you might have guessed that I wasn’t looking forward to a round two. The good news is that I don’t have to go back in because the margins were clear after the first surgery. In fact, it occurs to me that if things had been different, I’d be in the waiting room right now instead of writing to you, dear reader.

The other good news from this week is even though I needed help changing my bandages for the first four days, I finally changed them on my own last night. To be clear, there isn’t much physical pain associated with it, but looking at it was (and still is) mentally jarring. It felt good to be self-reliant on the matter.

So, where are things now? Well, I’ve got ten days before going in for ocular plastic surgery to close the wound. There isn’t any real way of knowing exactly what that procedure will look like until the day of the surgery at which point the plastic surgeon will assess how things are healing and what she has to work with during the operation. She prepared me for the possibility that my lower eyelid may have to be stitched to my eyebrow for a week or two (to stop the skin’s natural tendency of stretching down to heal the wound). Obviously I’m hoping that doesn’t need to happen because, frankly, it scares the shit out of me. But, if that’s what needs to be done to keep my eyelid functioning the way it’s supposed to and that’s what she thinks is the necessary course of action, then I guess that’s what has to be done. I’ve added two photos to the gallery to show what the wound looked like five days after the Mohs surgery (it looks less gnarly!) and my first self-bandaging. As I mentioned in a previous post, some of the photos are a bit intense and if you’re squeamish you probably shouldn’t click on the link.

As always, thank you for all of your love and support. I haven’t quite hit complete stability. My brain still has a tendency to spin out a bit. But talking with you on the phone, texts, email, and DM has been a welcome bright spot. I hope all is going well in your neck of the woods and that you continue to wear your sunscreen.

Love, Yr Pal Ben

December 25, 2019

Hello, All. I hope you are having an enjoyable holiday season around the people you want to be around doing the things you want to do with as little stress as possible. The update from here is a good one. I don’t know if it rises to Christmas Miracle, but it was definitely a welcome turn of events and its proximity to Christmas is certainly noted.

I went in for plastic surgery at 6 in the morning on Monday with no real idea of what was in store for me. When I met with the plastic surgeon at the beginning of December she wasn’t sure what she would be able to do or what she would have to work with by the time surgery rolled around. At that point I still hadn’t had my first Mohs surgery. In addition to not knowing how much would get cut out during that surgery there was also the possibility that I would have to go in for a second round to get all of the cancer out. When the plastic surgeon prepared me for the range of possibilities she might have to do, one of the things she mentioned was having to stitch my lower eyelid to my eyebrow for 1-2 weeks to stop my eyelid from being pulled down by the healing wound.

Thankfully I only had to do the first round of Mohs surgery and I was very diligent about the wound care (daily bandage change, Vaseline, etc.). If you’ve been watching the progress in the gallery, you may have noticed that the wound was healing like a champ (our bodies are marvels) to the point where it wasn’t exactly pleasant to look at, but it wasn’t the ghoulish spectacle of the post Mohs surgery photographs. So when the plastic surgeon inspected what she had to work with on Monday she was pleasantly surprised.

This is healing really well.

Cool. So I can just go home now?

It wasn’t that good, but she told me she wasn’t going to take extreme measures and that her guiding plan would be Less is More. She didn’t have to ask me twice – I was certainly good with that. By 7:30 I had an IV hooked up and was getting wheeled into the operating room. By 8:30 I was back in the recovery room. By 9:30 I was on my way back to my parents’ house.

So what did she end up doing? You’ll have to forgive me for not having a super scientific or medically coherent explanation, but basically she was able to use a miracle powder that stimulates cell growth in the wound. (This may or may not be the exact stuff, but it’s close enough to give you an idea of what I’m talking about) It’s relatively new technology and I am thankful for it. To keep the powder in place and doing what it should be doing I had a protective patch stitched to my face that I need to keep on until a follow up appointment during the first week of January. I can’t lift things or exert myself in any real way which is a bummer, but so much better than it could be. I can wait.

Of all the possible outcomes I was told about after the initial melanoma diagnosis, I don’t know that I could have asked for a better process. I feel extremely fortunate for all of the outstanding medical personnel who did the work and even more so for all of the wonderful people in my life (including you) who have chimed in with support over the last couple of months.

I’m hoping to rocket my way into 2020 and that I’ll have an opportunity to see many of your smiling faces and that we can find adventure together. Please remember to wear your sunscreen and know that I love you for all that you bring to the world.

Love,

Yr Pal Ben

January 8, 2020

Almost a month to the day of the Mohs surgery that took a substantial chunk out of my face, I went in to see how the plastic surgery I had on 12/23 was healing. It’s absolutely incredible to me how much the body and modern medicine can do together. If you look at the initial wound in the gallery and you look at the same wound after the bandage was removed yesterday, you’d be well within your rights to think that it wasn’t the same wound. But it was. And I’m working on the scar to prove it.

Not going to put the photo here of what my face looks like now, but I’ve added it to the end of the gallery.

Thanks, again, for being awesome and remember to (1) wear your sunscreen, and (2) check in with your dermatologist to make sure you’re doing okay.

Love,

Yr Pal Ben

PHOTO GALLERY