Pre-Traumatic Stress Disorder
For those of you who stumbled on this blog thinking it’s about POST Traumatic Stress Disorder………. Move along. That is a subject I’m neither qualified nor inclined to tackle.
This involves a pre-cancerous skin treatment called PDT (PhotoDynamic Therapy) or in my more nuanced and fearful adaptation of it; PTSD….Pre-Traumatic Stress Disorder.
I’m going to be running a month long series leading up to and through my treatment using this oddly medieval sounding treatment, complete with ghastly photos, just to inform those other blond/red/fair skinned souls what they have in store as they get to my advanced age. Be forewarned, I have never approached a therapy where no matter who the clinician, or physician, or fellow traveler on this journey who has preceded me, have so bluntly stressed how painful this is going to be. Every one. To a person.
It gives one pause…and stress….and trepidation, hence the nomenclature of PTSD. I am pre-stressed, pre-treatment, and thought it best to document it both as a cautionary tale to others who will follow and as a purgative for some of my own demons regarding the upcoming ordeal.
As a flaming red person of Nordic decent, I am candidate number one for skin cancers of all sorts.
Been there, had them.
Basal Cell, Squamous Cell, Actinic Keratoses, everything but Melanoma at this point and many times over.
After the last go ‘round with several Basal cells and the requisite surgeries, the doctor looked at the rest of my speckled face and announced that I really should be having a course, maybe two, of PDT since I am riddled with AK’s which, left untreated, will develop into other, more virulent forms of cancer.
Fry them all at once. Be done with it….for the moment.
And so, pre-treatment ointments in hand, I approach the day with not a small amount of jitters and jolts, morphine and valium at the ready, and a good friend who just had this done before me after a bout of Melanoma.
This will be graphic.
This intended to instruct.
This is not meant to shock or elicit sympathy or move to the morose.
As a redhead born in the 1950’s, pre-sunscreen, I, like all the kids of my generation, worshipped the sun. Unfortunately, my family of choice was of Greek extraction and their melanin quotient was never to be caught up with no matter how I tried.
And I tried.
When they laid out at the beach or by the pool, slathering on baby oil mixed with iodine, so did I.
When they formed reflectors out of cardboard boxed wrapped in tin foil to ensure that under the chin was as tan and even as the rest of their Mediterranean selves, so did I.
The sunburns were awe-inspiring.
Driving home from a month on the Chesapeake Bay in the summer, the game was to see how big a patch of skin we could peel off of each other in one piece.
Gross, but factual.
And so, the dye was cast.
Fast forward 40 years or so and the science has caught up with our aged skin and NOW they tell us that those hard-fought, crispy coronas we basted on were the setup for the skin cancers we fair ones were all experiencing now.
Damage control is the only option.
That, and a very close personal relationship with your dermatologist.
And so, in the coming weeks, look forward, or not, to a litany of medical miracles and if you have the stomach for it, the photos to demonstrate the steps along the way, both pre and post.
I will begin a week before the actual PDT when I begin to apply the topical chemo every evening before bed to rough up the skin and help those pesky AK’s absorb the real chemo that they will apply before they zap the face with a targeted laser light to really get the ball rolling. About a half hour of intense light directed on the face while it is coated with a stronger type of smeared on chemo. The laser activates the chemo.
I have been told it hurts like hell.
I have been told that the sound of the skin cells popping is hideous.
I have been told if I have drugs, take them.
I do….and I will.
After the in-office treatment, you go home to watch and wait as your face reddens like a lobster boiling in a stew pot, more each hour….just wait until tomorrow.
Speaking of the day after….
I have been told I must avoid all light for several days. Even the light from a lamp will re-activate the chemo effect and burn…and burn…I feel a Vampiric period coming on fast.
And then, in the words of those who have preceded me; “…my face fell off”
Now lest you think this is all therapy and no gain…..
I have also been told that when the healing is complete, I will have the skin of my childhood once more (minus the problematic acne but then laser burn is problematic in itself, I suppose).
So dear reader, stay tuned.
Be very afraid.
One more thing.
Just to ensure that I really, REALLY, need this….
I am currently spending two weeks in Key West, yes, you guessed it, soaking up the sun and getting one last really good tan before they “take may T Bird Away” to mix a 60’s Beach Boy metaphor in for laughs.
Remember……the damage was done 40 years ago and so if this holds true, then I only really have to worry about THIS sunny spell when I’m past 100.
Carac = this is the pretreatment chemo cream, akin to the many topical acne creams that redden the face and cause general discomfort in the name of clear skin. The doctor’s instructions are to smear on this treatment at bedtime, avoiding eyes, etc., wash your hands thoroughly and go to bed, washing your face in the morning as usual.
It has an immediate tingling effect, the fumes even make your eyes water briefly but it’s not really painful.
In the morning, your face is slightly pink but nothing more than you’d get while watching a polo match with no sunscreen facing the sun. Totally tolerable.
A word about the pictures. I started with a before, eyes closed, close up……..and scared the shit out of myself. It looked like a death mask!!! I had a clear image of what the coroner will someday see when I’m tagged and bagged….truly frightening…but I suppose that this is what I’m doing this for, to prolong THAT day as long as possible by warding off the possibility of melanoma.
So before we dive into the “morgue modem” I thought I at least deserved a semi close up to prove that to the naked and public eye, I’m not quite that frightening!
And now, day one…Pre-Treatment
A slight bit more blushed in the morning, the skin feels taught and tingly but, again, nothing more than a day in the sun.
No real change until Day 6 when I suddenly noticed the appearance of some distinctly red, damaged spots on the cheeks. I suppose this means that the chemo ointment is doing its thing and I will be curious to see what they look like after the real deal treatment tomorrow. My skin is still slightly taught, tingling, reddish (more than its usual tint) but I have a feeling that all this will ramp up considerably.
And so we arrive at:
The Day Of
A word here about internet research. I had the good fortune of having a good friend undergo this procedure a month before me so I got to follow him. There is wisdom and caution involved in any of these forms of study and research. As humans, we can talk ourselves out of and INTO trouble and dark places. This in one of those times where it is very, VERY, easy to go down the rabbit warren of often over-hyped and misinformed information paths that exists out there.
As I ate my breakfast (and more on that in a bit) I was busy, finally, Googling this procedure I was about to undergo and reading the comments from past patients with as much relish as I could muster at 5am.
It all depends on your ability to sort through the cyber-hype and realize that each of these opinions comes from a person with vastly different medical experiences, prejudices, and phobias than you may, or may not have.
That said, I put aside my reservations along with the online reviews and went ahead to my appointment. Having had the benefit of my friend’s experience, I armed myself with the 2mg of Valium that the Dr. had prescribed plus, an additional oxycontin that I happened to have on hand from a previous hip surgery.
No pain, no gain.
The last couple days a few damaged red spots on my cheeks, nose and forehead had appeared but nothing painful or really ugly. My technician commented that some who have been on Carac for a week, like myself, come in looking already like raw hamburger…they tend to have a stronger reaction to the actual treatment as well.
Here I am pre-procedure, post Carac
And so to the procedure itself.
First a good scrub with basically pure alcohol, nothing more than an antiseptic sting on a scrape, then, speaking of scrapes, a light scalpel scraping of the obvious AK’s and areas that need the most attention. This opens them up for the absorption of the next phase.
Levulon in my case, one of a series of chemo treatments that they will utilize here, that penetrate into the lesions and react to the light that is to come.
And now the wait, bring a book, music, ipad, whatever. You will sit and stew for almost 2 hours while the chemo soaks in and gets ready to do it’s job. Nothing to do but mentally prepare yourself and practice whatever form of calming mantras you have at your disposal. Oh, and let your kindly Sherpa go and fetch your post-treatment potions and a muffin and latte which will greatly, I DO mean greatly, help you relax!
After the appropriate amount or marinade, you are made comfortable on a table, fitted with the light panel, and told about the available fans to cool your face during the treatment. As my macho friend had admonished me, I said use to them immediately, as he had not and he squealed like a girl until he got his in play. The technician even says “There will be no warming up period after the light goes on, it IS hot…immediately”
And she was correct.
Now a word about pain and tolerance.
I have had four hip replacements, countless surgeries and procedures and so have developed a rather more nuanced relationship to pain than the average person. I actually speak to all in coming hip replacement patients at my local hospital and I always tell them to adhere to the pain med schedule that their Dr. has put forth for them. Never try to chase your pain because once it’s in front of you, you will never catch it.
I was way in front of this pain. The meds definitely helped.
So did earbuds, Bon Jovi….LOUD…and the constant ministrations of the lady with the fans.
I put into play all the meditation techniques I had at my disposal, I breathed slowly and deeply and let the pain wash over me. It takes some will power to let pain seep into your core in order to assess just how bad it’s going to be. This was painful but tolerable. After a couple of minutes I realized that this was as bad as it was going to get and that I could tolerate it for the 15 minutes it would take.
It is also a lot about setting expectations; how long IS 15 minutes? How long is 15 minutes when experiences this amount of discomfort? And a further observation. With your eyes covered and your bare face exposed to this laser it is akin to laying on the beach with your bare face exposed to a super hot sun. A sun that you KNOW is frying your face and that you KNOW you should NOT be doing. But this one you are powerless to stop because you also know that this is curing a lot of ills and saving you a lot of future misery. It’s a form of cognitive dissonance where something you know is awful is, in the end, good.
Go with the good.
Before I really knew it, the light went off and it was over….for now. I was lightly basted with cream, given my list of ointments and washes and sent on my way.
We went to lunch!
I came home and napped (the drugs), stayed in the dark as instructed, and waited.
This is me after waking up from my nap. It was definitely what I had expected. Not really painful, slightly tight, and getting redder. Watched some TV, greased up with Aquaphor and went to bed.
The morning after.
Dry, tight, slightly irritated but really nothing more than a long day in the sun at the beach.
Showered, washed, 60FPF sunscreen and I was good to go…….to Costco…..I needed a few things.
Now I had expected it to be a cloudy grey day here in Portland but someone changed things up and it was brilliantly sunny. Hmmmmmm Once again, they were correct. even through the car glass and the quick sprint across the lot I could feel the sun activate the treatment and there was a good uptick in tingling, prickly, pain.
Once indoors and out of the direct sun, it stopped quite quickly.
So at the end of day two, I am ruddy looking, in no pain and feel passably non-ugly enough to go out to dinner with friends.