Thursday, December 15, 2011

Week 7 - Week 3 of Healing

Sorry, I haven't forgotten to post. I've just been busy catching up with everything I never had the energy/inclination to do for the past 7 weeks. Okay I lie... it's mostly been trying to get technology to work. Phones/arguing with telecom companies/Internet connections, and computers.

My face is still pinkish in places, but it is fading. I occasionally get a twinge of itch but overall I'm looking much more presentable than I was during the thick of it. I'll try to get a photo out in the next day or so. I'm sleeping MUCH better, but I think that's partially because it gets dark at 4pm.

I've been searching for cannabis oil, but it's not as easy to find as you'd think. I keep getting numerous cannabis oil recommendations from people trying to be helpful. Lurking in the medical marijuana places "looking to score" has been unsuccessful. Talk about feeling out of your element! One place suggested I get my Dr. to sign a form that would allow me access to marijuana for medicinal purposes. There are several hiccups with that. My current GP wouldn't do it, my dermo certainly wouldn't, I'm trying to replace both of them and besides which, I want oil, nothing to smoke.

For other efudex users out there, it does get better and if there's one good thing I can say about the whole experience it's that by the time its over, you're so tired and worn down that the month or so that you used it will seem very foggy and you won't remember much. Of course, that could be just age creeping up on me.

Wednesday, November 30, 2011

Day 39 - Healing Day 9

Okay, I'm not sure whether this is healing day 9 or 10. I seem to be a day off somewhere.

Either way, today is the first day where I'm not in any pain, though I was still flaking like a snowsquall this morning. The itching hasn't been too bad either. Mind you, as I've mentioned before, it seems to get worse in the evenings. Fingers crossed it doesn't tonight!

I didn't have to use any Aquaphor today, which is good because it really does block your pores. I used some calendula cream that I got from the homeopath. Today is the first day that I've been able to use it without it stinging.

Most of the feeling in my chin has come back and my forehead isn't feeling nearly as tight either. My face is still pretty light red/pink but it looks like I've just had a reaction to something or perhaps a bit too much sun (no comment). What a difference 6 days makes!

Sunday, November 27, 2011

Day 37 - Healing Day 7

I woke up this morning with a forehead many Hollywood-types would be jealous of. Well, except for the red color and dry skin flaking off that is. There was not a wrinkle on it. It was very painful to move and my chin remains very tight unless lubricated with Aquaphor. So much that it's hard to move my mouth to even speak. The skin is not coming off in chunks anymore, but in annoyingly small pieces that are hard to get off. Very itchy too.

The center of my forehead and my chin are still somewhat numb, leading me to think that there is still considerable peeling to happen in those two particular spots.

Two different people this past weekend suggested Cannabis oil would have been a much better way to do this than the Efudex, making about 4 people this week that mentioned it. That video sure gets around. I first heard about cannabis oil about a week before starting treatment. I asked around and no one seemed able to get me any. At the time I chalked it up to some of the other alternative therapies everyone and their uncle seemed to be putting forward. Perhaps I'll put some feelers out again.

Saturday, November 26, 2011

Day 35 - Healing Day 5

It's quite interesting so see how fast some of the red is fading. People are commenting that I look better than I did yesterday.

I suppose thats good. I don't necessarily see it, but showers are somewhat less painful, and sleep is becoming easier to get.

I'm still using the Aquaphor to not only combat dry skin, but to relieve the pain that comes with the extremely tight feeling I have across my forehead and chin.

Thursday, November 24, 2011

Day 33 - Healing day 3

Well, those who've walked before me are right.

You struggle through 30 days of applying this stuff to your raw, sore skin - only to discover that it doesn't end then.

I think I got a total of about 45 minutes solid sleep last night, thanks for the constant itching/pain. People have asked what the pain feels like. I can probably best describe it as that feeling you get when you first realize a mosquito is biting you, but all over your face.

For whatever reason, as I've mentioned, it gets worse at night. My chin feels fine during the day, relatively speaking, but last night the pain was radiating through my jaw. Very similar to the feeling you get when you bite into something really sour and you get that achey feeling and produce excess saliva.

Again, I did the running back and forth to the sink splashing cold water on my face, followed with Aquaphor (I don't own stock in this stuff - honest!) and then laying in bed with a cold towel placed over my head/face.

Fun times.

On the positive side, I have noticed that some of the reddening is less intense, and fading from parts of my cheeks.

Tuesday, November 22, 2011

Day 31 - Healing Day 1 - Could be graphic...

I could also name this "the lost day". I didn't get a wink of sleep last night until about 6 am.

The itching and the burning kept me up, applying cold compresses and Aquaphor. Unfortunately, this makes you an itchy, gooey mess. My face was sticking to the pillowcase (which you go through many of when you do this) As a result, I think I dropped off about 6 am and napped until about 1 pm. The day goes pretty fast when you do that, with it starting to get dark already at 2:30 in the afternoon. (cloudy and grey outside).

After slopping on this vaseline-like product called Aquaphor several times overnight, THIS is how dry my skin was this am on my forehead.

I had a shower and let me tell you, I could very easily live in there right about now. Once the skin gets moist it doesn't crack and hurt and I get some relief. Several minutes out and the tightness starts again.

While I was in there, I gently tried exfoliating as much as I could without rubbing my skin raw. The skin was coming off in chunks. It's no wonder my chin doesn't have any sensation, the dead skin there is similar to the heel of my foot.

I got out and immediately put more Aquaphor on it. It still hurts, but not nearly as much as without it.

On one of my visits to the washroom last night, I noticed several dark spots appear that are dried blood that has scabbed over. They just seemed to come out of nowhere. I'm assuming these are the nastiest bits that we're trying to kill off. This one here is located close to that white spot where my first AK was burnt off a year or so ago.

Monday, November 21, 2011

Day 30

Today is the last day of applying the fluorouracil (Efudex) to my forehead. I can't believe I made it. There were so many times I was ready to quit, said "enough is enough" and a few days where I put it off for an hour or more while I debated about it. I probably should do an extra day for good measure, but I won't.

I've got one more application tonight to do.

Already, I can see where the rest of my face is getting redder/dryer as the cream does its thing. Apparently, like most chemotherapy, it is cumulative, so it's still working even though I stopped two days ago.

My chin doesn't hurt as much today, which is great, because anything brushing against it, being clothes, blankets etc, hurt like the devil! Yes, shaving hurts, but not shaving drives me batty because it's almost as if the facial hair in that area is now super sensitive

For some reason, the pain and itching is the worst in the morning and then starts up again in the evening.

Saturday, November 19, 2011

Day 28

Tonight was my last application on my face below my eyes.

Overall, a fairly good day with very little pain, except while in the shower this morning. I
tried not to touch some of the skin that was falling off.

If things go the way they have been, I should start feeling more pain tonight after midnight.
My chin has been very sore as there's some very deep-rooted action going on there.

Shaving is very painful, even with a new blade. Especially on the chin area thats swollen. Note: I only use triple bladed razors. I can't even imagine attempting to shave, even under normal circumstances, with a double or even single bladed razor. I have an electric somewhere, but can't seem to find it.

Only two more days for my forehead!

Interestingly, the lone, circlish, whitish spot on my forehead (seen at top photo on the right) appears to be where my first AK was burnt off (2 years ago?). There is a smaller white spot under it that appears to be damage-free area from the first spot being burnt off.

The bottom photo shows the inflammation in my chin. It's very tough skin and feels similar to how your cheek feels when you have freezing at the dentists. Also darker than the red around it.

Friday, November 18, 2011

Day 27 - Dear 16 Year Old Me

Yes, I know you just got your drivers license and you think that the most important thing is getting a car. Pfft. Save your money. That first car you get in two years will be great, last a heck of a long time and will take you all sorts of places.

You'll have great experiences and meet some great people along the way, but one of the most important things I could tell you will seem stupid to you right now.

Okay, two things. One: yes, you'll lose your hair at an early age. Don't fight it. Give in to it. Some people actually find bald heads a turn-on.

Secondly, and most importantly: Wear sunscreen. Every Day. High SPF. It doesn't matter if its winter or summer, sunny or cloudy. Wear it.

I know you're a sun lover but the sun is NOT your friend. It's your skins' enemy. It will kill you if you give it half the chance.

Wear sunscreen now, and perhaps you can avoid having to do a month long course of chemotherapy on your face and forehead to kill off all the precancerous nasties because burning carcinomas off with liquid nitrogen isn't enough any more. This month long course is extremely painful, include many sleepless nights of pain and itching, followed by at least another month of looking like something from a horror movie and getting all sorts of side-eye from others.

Worse yet, you go through all of this only to be told that this isn't just a one shot deal. There's the possibility of having to do this again, and the rest of your life is going to be dealing with sun damage, and watching out for spots that develop.

Thankfully, you'll never like tanning beds, but do yourself a favor - wear hats, take Vitamin D supplements and stay the hell out of the sun!

49-year-old you (yup... you'll eventually be THAT old)

ps. buy as much Apple stock as you can and hold on to it.

Thursday, November 17, 2011

Day 26 - A night of torture

I can say that last night was a night I won't soon forget.
I went to bed about 10 and tossed and turned until about midnight, when my face started to feel as if someone was going at it with a blowtorch, and then fire ants had a picnic afterwards.

It was, in a word, horrific.
Who came up with this idea of a treatment?
I am in awe of anyone who has done 30 days of this.

I read somewhere recently: "its not hell, but you can see hell from here".
Very apt.

I put cold facecloths on my face and eventually broke out the ice packs and crawled into bed with them. It offered some relief, but not enough where I could fall asleep. Even my usual 2 allergy tablets, which normally knock me out - did nothing. I finally dozed off at 8:30 this am... just in time for the phone to ring at 9:15. I couldn't muster the strength to answer it.

Eventually I had to get up to put more of this stuff on my face. I did everything south of my forehead and thought "enough is enough". I can't do this anymore. I left my forehead without Efudex but put some Aquaphor on it to give it some moisture.

I eventually felt bad and put some efudex on very sparingly on top of the aquaphor. At this point, I don't know if I can tough out another two days for my face, and 5 days for my forehead.

My chin doesn't even feel like my own skin. It's thick and my dimple is almost flattened. It's so swollen I'm walking around with a perma-smirk.

Tuesday, November 15, 2011

Day 24

I think my shower today was about 45 minutes long and in two phases. After the first shower, I looked in the mirror and my face was grey. (Note to self... start showering with the phone) All the dead skin on the surface had sopped up water and I looked like something someone had dug up after being planted for a few weeks. To be honest, even if I had taken a picture, I'm not sure I'd have posted it here. It was that gruesome.

So it was then back into the shower to GENTLY exfoliate some of the dead skin off.

As I finished and it started drying, it really started to hurt. You know you're in trouble when putting chemotherapeutic cream on your face feels good. At least it was moisture of some sort.

I had a great lunch with friends, with lots of laughter (which REALLY hurt btw!)

Every time I look in a mirror I can't help but wonder, like many have before me I'm sure, how will this ever turn into something normal looking again?

I also hope that I can somehow skip the crusting phase that comes the week after you stop treatment! I know, not likely.

Two things I mean to mention before I forget..

Last night I went out after it got dark (as you do while you're doing this) and was checking my neighborhood Rexall drugstore to see if they have Aquaphor (now that I know what it looks like). They do. While I was there, I was checking out the sunscreen section. They only had one product that does not have Oxybenzone in it. Ombrelle makes a product with Mexoryl. For more information on Oxybenzone and good sunscreens, go here.

From there I went outside to have a veggie hotdog from a street vendor. (no comments about the health implications of eating street food please!) While I was sitting there, someone came up and tried to give me money. I guess they thought I was homeless or down on my luck (well, 1 out of 2). I was taken aback at first and started to protest but then took the money and gave it to another guy around the corner on my way home who is always asking for spare change.

Sunday, November 13, 2011

Day 22

And so begins what is supposed to be my final week. At the link a friend brought to my attention, at least one Dr. advocates 45-60 days of this for facial treatment twice a day. I can't imagine. Though I suppose being delirious for the better part of a month and a half would be good to help the time pass.

"Movember" is supposed to be where guys grow a moustache in support of prostate cancer awareness. I can't help but chuckle at the irony that I shaved my moustache off to do this, and it appears to be the only place on my face that doesn't have precancerous spots.

It's a "virtual mo".

I'm also treating a spot on my left shoulder that is getting cranky, but does not hurt.

Not a bad day today. Mornings seem to be the worst. My forehead is starting to peel again, and since I've been avoiding my nostrils, the cracking there is healing. I had the pain under control pretty much for the rest of the day. I didn't sleep much last night at all, so I've taken something to help tonight. I'm hoping it'll kick in shortly.

Saturday, November 12, 2011

Day 20/21 - Still think a tan looks healthy?

I read today that WAY back 9 days ago I said that this whole thing hadn't been as bad as I expected.

What a difference a week or so makes.

Okay, I admit it.

It is now as bad as I thought it'd be. I don't know how some patients have gone 30 days or more of doing this.

Yesterday, I was again, ready to give up. These first two photos are from Day 19. Yes, that spot to the left of my nose down towards my mouth is as cranky as it looks.

I'll be honest, the pain itself isn't what is killing me... it's that it's constant. 24 hours a day. It really wears you down.

I don't know what is in this Aquaphor stuff, but it feels
like there's sand in it when I apply it. Yes, it brings some relief, but it just dulls it.

With a bad sunburn, it lasts maybe two days and then its done (or so you think!)

If you're using Efudex for the first time, make sure you give your lips a wide berth, unless you're told to apply it to them. Two nights ago, a chunk of skin fell out near the corner of my mouth. Wow, that was painful. I'm sure it was not 100% healthy skin but I could have done without it. Perhaps once this is all over, I'll revisit applying it closer to my mouth for a few weeks. One problem area at a time. Right now everything is sore. Especially the area around my nostrils (another area you should give a wide berth to!) You know that cracking you get with a cold and blowing your nose too much? Multiply that by about 10. But much like having my experience having my wisdom teeth removed, one spot hurts more than all the others, which can be distracting. In this case, it's my forehead.

Then there are the bloody spots that are now occasionally popping up on my forehead. Those, I'm used to. I can also feel that I'm in for another big peel in a few days. The tightness is incredible, and even biting into food is, if you pardon the expression, an eye opener because you get a shooting pain from the skin on your forehead stretching. So obviously, smiling for a photo is out.

I've noticed that my nose and eye area is swollen, which may or may not be the reason my vision feels a little wonky. I recall reading about someone else with this side effect.

Tomorrow is the 3 week point (of 4) for my forehead. Two weeks for the rest of my face. By the end of another week, I expect that my entire face will be red. Every day brings a spreading of the existing red, or spots popping up on my cheeks. Strangely, the area where my moustache would be hasn't got any. Strange because I only started wearing that once I hit my 30's, after most of the sun damage would have been done (I'm guessing, based on my scalp and it being relatively clear)

One thing that has been interesting is watching how others treat you differently when you look like this. Not that salespeople these days in Canada could ever be classified as friendly, but its even worse. Putting your change on the counter rather than putting it in your hand, being very terse and not very friendly, even when they have always been before (like at the local coffee shop). People that look like they're going to hold the door for you, look back and see you coming, and then run off so as not to have to have any interaction with you at all.

Wednesday, November 9, 2011

Day 18 - Help me Obiwan Kenobi!

I will add to this later, but if you've stumbled across this site because you're going to be doing Efudex treatment, do yourself a favor and order some Aquaphor in advance. If you are in Canada, it can be hard to find, but I know at least one Shoppers Drug Mart has it. If you cannot find it anywhere, let me know and I will send you some. I've seen it for sale on line for 5.99 US.
It's way overpriced here in Canada - $11 for 1.75 oz and you might have qualms about putting what is essentially vaseline on your face.
Do it. Do not even think of trying to "get by" without it. Its pretty amazing.

Note that in Canada, the "Eucerin" name appears in larger font at the top of the tube... Aquaphor appears smaller in the middle of the tube.

I was ready to commit several different types of homicide/manslaughter today, tore a bank appraiser a new one (he deserved it) and I think I scared the bejeezus out of one of my neighbors because she didn't recognize me. Pain and discomfort.
I called the Shoppers near me and they had it. The young woman that worked in the cosmetics department couldn't have been nicer (she was amazed that the "healing water" tester she told me to try, stung.) I got my Aquaphor (made by Eucerin) came home and put some of it on.

I won't say it was like dipping in an alpine lake, but some of the pain and tightness has diminished. To the point where I am up and not feeling too bad. However, if I were that bank appraiser, given his attitude today, he shouldn't expect to leave here on Monday unscathed.

I was ready to crawl up into a ball and self medicate for the evening... how was I going to get through another 12 days of this before the healing can begin?? This stuff may make it possible.

Be warned, it will amplify your redness and I noticed that a few minutes after applying it, some of the skin on my forehead had "bubbled" to the surface. However, I am hoping that I'll be able to sleep better tonight.

NOTE: As you know, you are not supposed to apply anything to your skin within two hours of Efudex application. Make sure you apply the Aquaphor AFTER the two hours have expired.

Day 18

Tuesday, November 8, 2011

Day 17 - Worst day yet

In the name of all that is holy!

Not a good day.

There are some negatives about being a bit of a pack rat/hoarder. Yes, I have a hard time throwing some things away.

However, today I'm SO glad that I kept the Tylenol 3s that I never took after having dental implant surgery. I think I'm tired because the pain is constant. It doesn't seem to come and go in waves.

I have visions of F Murray Abraham in that Star Trek movie where his facial skin is being stretched and at one point, when he gets upset, sprouts a leak from his forehead.

I've tried Aloe Gel... 99.9% pure, thinking it would help... but it did not. Stings like hell once the cooling effect wears off. I was reading somewhere today where people seem to get better relief with ointments rather than creams/gels. In the meantime, its back to cold compresses.

The worst part is the middle of my forehead, which is VERY tight, and I can tell that there is going to be some major peeling in very short order. You can't really tell in the photo, but the center of my forehead is a bit darker than the red around it. Almost a purple color. Followed by the corners of my bottom lip, which have become inflamed. I haven't been putting the stuff on my lips but its had an effect on the bottom lip.

Someone asked me today if I was wearing lip-liner.... uh, no.

I'm trying to keep a sense of perspective though... (there's that word again).

The friend of my brother and his wife - who was so ill a few weeks back, passed away on Sunday. Discovered an odd-looking mole less than a year ago. The funeral is tomorrow. I'll stop kvetching. My condolences to his wife, children and family.

Sunday, November 6, 2011

Day 15 - Halfway point


I had a good night out last night. Wearing a hat is very uncomfortable. It itches and keeps the heat in, which makes things even more uncomfortable. So I went hatless at a fundraising function with some friends.

I got some stares, but no one said anything.

I was doing great today until I had a shower. When I got out I looked like an extra from the "Walking Dead". Lots of skin peeling off. A particularly weighty piece was from the spot where all of this journey began several years back. A spot on my forehead that started bleeding for no particular reason while washing my face. Fast forward and here we are today.

So I took some Advil and then it was back into the bath to try gently rubbing some more of it off. This took about 10-15 minutes. Then I had to wait for it to dry and put the Efudex on and get on with my day.

I've been meaning to post full-face photos but it's pretty time consuming to get one where I don't look like the mug shot of an axe-murderer (with no slight intended to axe-murderers).

Perhaps its not possible ;-)

I've read where people doing this treatment count down the hours towards the last application, or give up after 2 or three weeks. I can very easily see how that would be possible.

After I put the Efudex cream on, I noticed that my skin was kind of weeping. Much as it does when you have a bad burn.

But I'll press on.
Fortunately, I have the next few days off work, so I won't be assisting anything to fall off. I'll let it fall naturally. I'll just concern myself with the move, which is progressing. Off to do a cold compress.

On the literature that comes with this stuff, it says that it might make you sensitive to sunlight. They aren't kidding! Even with the sun low in the sky today, simply standing in front of a window is uncomfortable. I feel like I should dig out my vampire teeth and black cloak from the Halloween supplies box.

By the way, the indentation made by the chunk of skin that fell out the other day appears to have leveled out with todays sloughing.

Tomorrow, I'm off to Costco for another tube of chemo cream!

Friday, November 4, 2011

Day 13

I don't know how they got here, but welcome to those visitors from Russia!

Things are progressing.

Warning... this may be a little too descriptive for the squeamish...

As I washed my face this morning (with a Spectra-gel-type cleanser) a piece of my forehead fell off. Not a large piece, but a chunk of skin fell out, leaving an indentation where there was not one before. No bleeding, just an indentation. About 1/4 inch wide by 1/8 inch high.

The skin below is red (as is most of my forehead anyway). It doesn't hurt. Well, actually my entire forehead hurts, but this spot in particular doesn't hurt more than the rest of it. I've heard of this happening to others who've done this treatment, but still, it took me by surprise. Perhaps this is the beginning of a "shedding" phase. Much of my forehead is very dry now and some areas are starting to crust - which is expected.

I have noticed that the spot on the center of my forehead that is the reddest, is very much where I had a sunburn-induced blister back in 1976. I remember that burn VERY well because I could barely talk, that's how burnt my face was.

There are other spots on my face below my eyes that are starting to "light up". Not nearly as much as I expected, but around my mouth, chin and nasolabial folds (laugh or smile lines). I have every expectation to see some more spots appear next week.

I also found it interesting that my scalp hasn't been as affected by the chemo-cream as much as I thought it would be. You can almost see where my hairline used to be, when I had hair. So I would assume from this, that a good portion of the damage done was started more than 20 years ago.

I've received emails from a few people who've stumbled upon this blog, who were given a prescription for this drug by their Doctor but were not told what it was, or what it was for. This seems to be very common, and not limited to any one particular country.

I've also heard from someone in Florida that the same tube of Efudex that costs me $39 at Costco here in Toronto, is closer to $300 in Florida. Thats ridiculous, but seems to be fairly indicative of some of their particular health care system problems.

Wednesday, November 2, 2011

Day 11

Okay, today having a shower was very painful.

The water felt like acid on my skin.

Putting the cream on afterwards was painful as well. Time to start taking some Tylenol. Lets put it this way... I had extensive gum surgery a few years ago and didn't take the Tylenol 3s and Percocet I was prescribed. I'd be taking smaller portions of them starting tomorrow.

All this being said, it hasn't been as bad as I suspected - so far. I keep trying to keep that final goal in mind - having skin that has much less pre-cancerous spots and less likely to develop melanoma at some point in the future.

My visit to the Dr. yesterday was interesting. He doesn't want to prescribe me anything to relieve itching because "we're looking for a histamine response". His solution to that and the pain was "Tylenol and cold compresses". He said that I should continue until I get blistering/scabbing and then stop - not necessarily going by the 30 day instructions he initially gave.
He suggested that it was "my call" to do the rest of my face at the same time, and that perhaps it would be best leaving it until after we're finished on my forehead. Who wants to go through 4 months + of this? Given that I'd already started, I figured I may as well persevere.

Meanwhile, I see things are starting on the rest of my face. Particularly near my mouth. Oh joy. That means more of me to see for anyone reading this.
It's interesting (in a way) that the angry spot in the middle of my forehead corresponds to where I had a sunburn blister back in 1976. I remember that. I got burnt so bad I could barely move my face and mouth. History repeating.

A note to any Doctors that happen to be reading this:
  • Don't treat your patients as a number.
  • Give them more than 3 minutes of your time.
  • Listen to them. We're people and don't have all the knowledge you do.
  • Having Interns examine and deal with us is fine, but you walking in for the last minute of our appointment time does nothing to instill confidence. Especially when a good deal of the first two minutes was spend clarifying/correcting details in my file.
  • Don't lose your patience with someone asking what you seem to think is a silly question. This is new for many of us, and we're scared.
  • If a patient asks about pain meds, or something to make the process easier, don't pooh-pooh the idea and suggest cold compresses. Some of us won't ask unless we really need it. Not everyone is a drug addict looking to score a fix.
  • GPs.... please do NOT refer your patients to specialists who are so busy that a patient can never get through to their office by phone, or those that only hold "clinics" once a month at a local hospital. Nor should you refer them to Drs. who are more interested in selling Botox/Restylane and other cosmetic fixes than dealing with problems that could kill you.

Monday, October 31, 2011

Day 9

Happy Halloween!

Things are progressing well now, as is the pain.
I find its at it's worst in the morning as you start moving your face/forehead muscles. It's like having ground glass rubbed into an open wound. I'd gladly advocate having Botox done before doing Efudex... but I admit that having this stuff on my forehead means I don't move it around as much.

As the day goes on, it gets better painwise, and I find that some of the redness tames down a bit.

I'm SO glad I started doing this in the fall and not at the beginning of summer. Even sitting in sunlight through the car window is very painful.

I started putting the Efudex on the rest of my face and ears two days ago, and I'm off to the Drs. tomorrow.

Friday, October 28, 2011

Day 6

Things are starting to happen now.
For a while there, I thought maybe I got a bad batch of Efudex.
Not too much burning/pain but I can feel and see something happening.
I was nauseous yesterday and today. I'm not sure if it was something going around, or from the cream/ointment I'm putting on twice a day.

Thursday, October 27, 2011

Day 4 and 5

Now that I have a couple of official followers (welcome/いらしゃいませ!)I guess I'll have to be better at keeping up.

Day 4 - yesterday

About the same - the spots on the side of my head are getting more prominent but the worst pain was from where I knicked my scalp shaving. ;-) Others have said that once they get into this, they have to stop shaving.

Day 5 - Thursday October 27th - Only 25 days to go!

The mottling on my temples is getting redder, and a few spots have cropped up right where I expected. The areas around the spots that were previously burnt off are clear so far, so I guess all the nasty stuff was killed off in those areas. Pretty amazing when you look at it and think that this is all sun damage. The AK spots (actinic keratosis or "solar" keratosis) spots on the top of my head aren't as rough/scaly as they were before.

I tried taking some photos this am but no luck... I had to get to work. Perhaps I'll work on it tonight or tomorrow. Other than that, just the occasional itch and a dull headache. Others have talked about a burning sensation (like sunburn) but I haven't experienced that yet. I'm not feeling great today and am quite nauseous. I can't be sure if its from the cream or perhaps the flu bug that seems to be going around. Time will tell.

Two more days until I start doing my entire face - for 3 weeks.

Tuesday, October 25, 2011

Day 2 and 3

First off, yesterday....Day 2 was a non-event. Thus, the reason for no post.

No apparent reaction other than a few itchy spots.
You never realize how much you touch your face until you have a chemical on it that you want to avoid getting on your hands and then transferring it to other surfaces, eyes, mouth.

Even today, Day 3 has been good. I was out digging some plants out of the garden (yes...wearing a hat!) but have noticed my skin is a bit dry. I just put on the evening application and can't be 100% sure... but it looks like I'm getting a reaction on my temples... particularly the right side. Kind of a reddish mottling beneath the surface.

We'll see what tomorrow brings!

Sunday, October 23, 2011

Day 1

With apologies to Hello Kitty...

All the procrastinating is done. Bargaining finished. The calendar more or less cleared.

This morning, I did my first application of Efudex. Only 29 days to go!

I was awake at 4:30 am. No, I didn't do it then. Like anyone wanting to avoid the inevitable, I waited until the last minute. But I did find time to go over the literature again. Hey, I couldn't sleep anyway!

- treated area may become unsightly during treatment and in some cases for several weeks after treatment
(Yes, any of us that have seen the photos of others online can see this)

Side Effects
- skin irritation, burning, redness, dryness, pain, swelling, tenderness, or changes in skin color,
- eye irritation, trouble sleeping (as if hearing you have any kind of cancer is ever a
real ZZZ-inducer!)
- irritability (from the lack of sleep no doubt),
- temporary hair loss (meh... it could be permanent for all I care),
- abnormal taste in the mouth

For those out there that have to go through this, I know you're scared. Heck I'M SCARED. However, doing something about it is better than not doing anything and things getting worse.

I would have killed to be able to put a moisturizer on today (dry indoor air) but thats a no-no.

So I put on my gloves and spread the Efudex on. Its consistency is a little odd and its hard to get it to spread evenly. Practice will make perfect I guess. The good thing is that it doesn't appear to be greasy and doesn't appear to have any scent, pleasant or otherwise.

I think it's important to realize that everyone is different and will get a different reaction based on how much cancer/pre-cancer/AK you have on your skin.

This is part of the reason I'll be posting photos. Perhaps not everyday though. No touchups. No Photoshop blur tool, no vaseline on the lens.

The other reason is that if it can motivate anyone into wearing sunscreen to avoid having to go through this, then maybe all the angst and, according to the warnings on the label... pain, will have been worth it.

I suspect that the top of my head is going to be the worst, but I already know that it is the part that needs treatment the most.

Friends have said they don't see anything. I do. I can feel it. It feels kind of dry skin, which is what I thought it was. This is what makes skin cancer so insidious. You either can't see it, or think its something else.


Sunday, October 9, 2011


I start my treatment in 13 days. Frankly, I'm dreading it, but I've been so busy with other things that I've managed to file it away and not think about it too much. Perhaps I've even been a little cavalier about it.

Until tonight.

A friend of my brothers went to the Doctor less than a year ago for a mole that "looked funny". In the 10 months since, he's had surgery, intravenous chemotherapy at least once, been diagnosed with melanoma and was told to get his affairs in order - quickly. The latest chemo treatment he's on may give him an additional month, but he now has mets in 4 major organs and without current treatment - has a few weeks at best. Under 45 with two kids, a wife, and a 2 week life expectancy. About the same time I have before I start my treatment - very short.

Suddenly, walking around looking like I've had a run in with severe poison ivy, a bad sunburn, combined with some blistering/pain/itching, other chemo side affects doesn't sound so bad. Worrying what reactions other people will have towards my appearance seems silly.

Nothing like mortality to put things in perspective.

And here I was, thinking I'd get a good nights sleep tonight!!

So this Thanksgiving, I think I'm most thankful that:
- so far, I appear to be on top of things
- I didn't allow vanity get in the way and procrastinate further on this

If you haven't done so in a while, check your body, or if you have "40's eyesight" have someone check it for you... especially your back or other parts you may not have seen in a while. Take note of anything unusual, especially moles or other raised areas that are new, irregularly shaped, feel scaly, bleed easily or are "funny colored" - and get them checked by a Doctor.

Tuesday, September 27, 2011

What about Vitamin D?

Some people have brought up a somewhat valid point and it involves getting enough sunlight exposure to produce Vitamin D.

Funny that this comes during a week where we've got rain forecast for the next 5 days and it's almost pitch black outside at 7pm.

No one is saying to stay out of the sun and live like vampires, but we have to realize that the intensity of the UVA/UVB rays reaching the surface of our planet is increasing due to the destruction of ozone. Sure, people can argue about the existence of that and global warming, but try getting an appointment with a dermatologist. Many of them are operating at maximum capacity dealing with clients with sun-induced skin issues.

If you don't want to take Vitamin D tablets (and I'm a huge fan of those), get your sunlight exposure before 10 am or after 4/5pm (during summer obviously), when the sun is not at its strongest. This is especially important for young kids. Doubly so for fair skinned, freckled and red headed individuals.

Apparently, all you need is 10 minutes a couple of times a week. (If you live in a northern country like Canada, you can probably see the problem with this already, and the need for supplementation)

I remember kids when I was young getting sunburns and having "contests" to see who could pull their skin off in the biggest sheet. What were we thinking? Clearly, we weren't.

You may find that you find winter easier to tolerate as a result of taking Vitamin D3. For many, their mood improves as does a number of other problems including, for me anyway... lower back pain.

Saturday, August 13, 2011

The Smokescreen on Sunscreens

Did you know that in the United States, that sunscreens aren't subject to any real regulation by the Food and Drug Administration, and that the FDA has been waffling on safety guidelines since 1978? Some of the more effective ingredients that have been in use in Europe and even fairly recently in Canada like Tinosorb S® and Tinosorb M® are still not approved by the FDA.

Just like the photo here, a higher SPF does not necessarily translate into increased protection. Many screens with a high SPF only protect you from UVB, not UVA.

Theres some fascinating information at:

that goes on to rate many sunscreens on their effectiveness, and also has a list of the members of their "Hall of Shame".

Some of these Hall of Shamers are products geared towards use on babies. Some of these have a high SPF that give the impression of high protection, but only against UVB rays, not UVA rays, which are the ones that go deeper into the skin and cause cellular damage.

I think it's a shame that many of the most highly ranked sunscreens don't appear to be available in Canada. At least, I've never seen them on shelves here in Canada. It's also rather shocking that one of the sunscreens my dermatologist recommended for daily use is ranked as a moderate risk due to it containing oxybenzone.

Oxybenzone risks:
Developmental/reproductive toxicity, Endocrine disruption, Allergies/immunotoxicity, Persistence and bioaccumulation, Enhanced skin absorption, Biochemical or cellular level changes

Even worse is that a can of spray sunscreen in my bathroom, which is promptly going in the garbage, is ranked as a high hazard for: being a spray, having oxybenzone and vitamin A in it. That makes sense.... breathing in chemicals that cause endocrine disruption, biochemical and cellular level changes can't be that good for you. Now think of how many parents you see spraying their kids with this stuff. They even make it smell "nice" so it's not offensive when you breathe it in, and you breathe it in deeply because it smells good.

There's a logo on many sunscreens that give the impression that it is recommended by the Canadian Cancer Society. Did you know that all the use of this logo means is that the manufacturer PAID the Canadian Cancer Society to use their logo? On the back of my apparently toxic sunscreen, it says... in tiny letters that my old eyes can't read very well: "The Canadian Cancer Society supports the use of sunscreen but does not endorse specific products."

So give the impression that you are recommending or endorsing this particular product, but then state in small letters that you don't.

Have a look at the EWG site and try to find your favorite sunscreen there and see what they have to say about it. It's quite enlightening.

"Sunscreen makers and users in Europe have more options than in the United States. In Europe, sunscreen makers can select from among 27 chemicals for their formulations, compared to 17 in the U.S. Companies selling in Europe can add any of seven UVA filters to their products, but have a choice of only three when they market in the U.S. European sunscreens could earn FDA’s proposed four-star top rating for UVA protection, while the best U.S. products would earn only three stars. Sunscreen chemicals approved in Europe but not by the FDA provide up to five times more UVA protection; U.S. companies have been waiting five years for FDA approval to use the same compounds. Last but not least, Europeans will find many sunscreens with strong (mandatory) UVA protection if proposed regulations in Europe are finalized. Under FDA’s current proposal, Americans will not. " - from EWG website

If you're in Canada and looking for a quality sunscreen that offers protection against UVA as well as UVB, it would appear that you should look for sunscreens containing Mexoryl XL, Mexoryl SX (Anthelios™, Ombrelle™, Vichy™ and Biotherm™ (L'Oréal) products and Tinosorb S® and Tinosorb M® Minesol® SPF 60 products (RoC®/Johnson & Johnson)

Yes, it hasn't gone un-noticed that some of these are much more expensive than most products commonly bought at the drugstore. How many parents can afford RoC for their kids?

Or you could just buy your sunscreen in Europe. Or we could lobby Health Canada for stricter guidelines on labeling, packaging and ingredient disclosure.

Monday, August 1, 2011

It's Payback Time!

So I'm trying to pay some information forward...

It's all her fault.... and her little dog too!

It's been an interesting couple of months.

You go to what has become a routine dermatologist appointment to have some spots sprayed off with liquid nitrogen and he suggests a cream that will attack "a larger field" and causes "some reddening but once you get blisters you're done!" (I suppose for some people, having liquid nitrogen sprayed on their head, or for that to actually become "routine" would have been a big warning sign)

I've always been susceptible to sunburns. Fair-skinned, blue eyed and red hair when I was little. When most of us were kids, we were bombarded with "Coppertone Tan" ads and we spent lots of time around water and the beach. I loved being in the water, and summer was to be spent outdoors. I think the strongest sunscreen I ever used (until my 20's) was perhaps an SPF15. I remember a few blistering sunburns. One was so bad that I had the chills that night as I was burning up. My parents encouraged us to wear Sunscreen but like most teenagers, I thought I knew better. I wanted a tan!

So I take this prescription to Costco to get filled, only to have them tell me to come back the next day as it had to be ordered. When I went back the next day, they got all weird, asking me if I wanted to speak to the Pharmacist. I said jokingly, "its a cream, it can't be rocket science", but the staff person didn't laugh.

When I got out to the car I looked at the info sheet you get with 'scripts here in Canada. Things taking on a "metallic taste" really got my attention. Thats not a good sign. I whipped out my phone and Googled this product called "Efudex". It turns out that its a topical form of Chemotherapy.


Of course, I tried getting another appointment ASAP with the Dr. but couldn't even get through to a human, so I started Googling and looking at photos. This did nothing to reassure me. When I finally got ahold of the Dr., he told me I shouldn't be looking at pictures online. (If I could get through to his office, I wouldn't need to be doing that, would I?!)

Some reddening?

Thats an understatement.

I work with the public, and even my favorite hobbies involve putting myself out in front of people. I'd managed to snag a bit part in an Opera being done this fall and walking in there looking even a fraction as bad as people I'd seen in photos was a deal-breaker.

Just how bad are these photos? Have a look here. (Goes to a Google search)

Actually, some of these don't look so bad now....

So, on my next appointment, I asked if we could burn off some spots that concerned him and start treatment in the Fall. Who wants to have to stay indoors or walk around looking like raw hamburger during the 8 weeks of nice weather we get in Southern Ontario? He agreed and I've set my "start" date as October 23, 2011.

It should be interesting as that week, several people asked me what was going on as the spots that were burnt off, blistered and then crusted over. I'm not looking forward to October, and it'll be here before we know it, but it's got to be done.

I don't know how this is going to affect my work. It's not like I can telecommute. That's a big question mark at this point.

Why this Blog?

I noticed that though there are a few blogs out there that detail the patients' progress using Efudex, but I think there's always room for 1 or two more voices.

Perhaps a Canadian angle? Already, I'm noticing that the same prescription for Efudex that cost me $39 at Costco, is several hundred dollars in the US. Though it's nice, in an odd sort of way to see that something is more expensive in the US than in Canada, because we're so used to seeing the opposite, why does it have to be something like this?

It'd be nice if some Drs. saw this and thought that perhaps maybe they should better inform their patients of what's going on so they don't put 2 and 2 together in a Costco parking lot.

Further, if my experience can persuade even ONE person (especially young people) to use sunscreen more, in order to avoid having to go through up to 8 weeks of pain, blistering and looking horrible, or having to endure surgery to remove cancerous spots, then maybe its not such a dreadful experience to go through.

I can tell from peoples reactions a few weeks back that stares and questions are going to be a daily occurrence. I'm thinking of making up some buttons that say things like "Use Sunscreen!", "Don't worry, it's not contagious", etc ... maybe make it an educational experience for others.

My Dr. said that he doesn't expect me to "light up like a Christmas tree" (my words - not his), but we'll see.

So if you are coming across this blog because your Doctor has prescribed you something called Efudex/Efudix/Carac or Fluorouracil and you don't know what it is or what to expect... welcome! Yes, there are some scary photos out there and kudos to the authors who have documented their progress using this.

The good news is that if you're using this drug, you're being proactive and hopefully catching things before they turn worse, or much worse.

If there's one bright spot in all of this, its that apparently, people who've used it have reported younger looking skin and fewer wrinkles as a result.

Okay, I admit it. I'm clutching at straws. :-)

In the meantime, the next time the Doctor asks if I've been wearing sunscreen everyday, I can honestly say yes - SPF 45 to 70. I'll just have to make sure that it's one of the ones that isn't misleading.