As we approach summer ....

or at least we hope we're approaching spring and summer - it's been a looong winter....

Just a reminder to everyone out there to use sunscreen - everyday!

I've been experimenting with a few but don't want to advertise any of them here.

I seem to be hearing more and more in the media that, aside from concerns about skin cancer,  if you want to look younger longer, wear sunscreen everyday - even on days when it's cloudy.

I won't rant and rave about the poor choices we as Canadians have (loaded with oxybenzone) because the good stuff is very expensive and truth be told, I think that even a sunscreen with oxybenzone in it is better than nothing.

Over the past 9 months or so, I've had several more spots blasted with liquid nitrogen to remove them before they get a chance to turn cancerous. The good thing is that I can recognize some of them now and get on them right away.  This of course wasn't the best news, especially after going through the Efudex treatment but my Dr. said that because skin damage is cumulative, it can take months or years for existing damage to become noticeable to the naked eye.

I suspect another round of Efudex is in my future, but I'll deal with it when the time comes.

The good thing is that I was recently told by a Dr. who deals with skin everyday that she never would have guessed I was 50. Thanks Efudex! ;-)

Final note for today: if you have access to preventative health care and or insurance, especially if you are fair skinned or have plenty of moles - ask your Dr. to refer to you a Dermatologist that can do a skin map to keep an eye on areas of concern, and/or nip things in the bud. Skin cancer and pre-cancers are very treatable if caught early. The sooner the better, with less invasive methods of treatment involved.

First time here?

You may find it easier reading about the treatment in chronological order from the beginning. There's a link to the right called "Treatment Journal from the Beginning".

(For some reason, I can't get Blogger to list entries in any order other than latest being first)


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Follow-up - 3 months after treatment finished

I went for my follow-up appointment with the dermatologist yesterday.

Every time I see him (his clinic is at a hospital) he's with an intern or Doctor in training as I see the other person first and rehash history AGAIN (which is all written in the file in front of them) and then He comes in. It's always been a different Intern/student.

I told the intern to please listen to something I had to say... and to remember it:

"If you ever have to prescribe this stuff to a patient, please, I beg you... listen to their concerns and prescribe them something for pain in case they need it, as well as something to help them sleep, I feel like I was left out there hanging and ended up taking drugs that weren't specifically prescribed to me for this condition".

"Like Tylenol 3?" He asked.

"No - like oxies left over from a back injury". He seemed surprised.

I showed him a photo taken during treatment and all he could say was "wow".

"Now you know why I was taking oxies".

So then the Dr. came in and said that I'd hit a "home run", that he couldn't see any spots that needed further attention at the moment, and to come back in 4 months.

The red patches that deepen every morning when I put sunscreen on my face will apparently fade over time. He didn't give a timeframe.... it's been 3.5 months now but I've discovered a tinted moisturizer with SPF20 in it that helps blend everything together on days when I don't want to look quite as patchy.

If you've been following from the beginning, you probably know I'm not particularly pleased with this Dr, so I have an appointment with another one in May, where I'm hoping I'm not just someone in and out of the office like a revolving door. Where you can ask questions without being given the impression that you are taking up their time, which is of course, MUCH more valuable than your time. Or if you're going through treatment you can actually speak to a human over the phone.

I've got 4 months before I see my guy again. Perhaps I'll write a letter and just give it to him and ask him to read it. That way I can make sure that he knows exactly how he could improve his practice. It's not like he's going to be less busy than he is already.

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!

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.

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.

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.

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

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 scaly...like 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.

Before

Perspective

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.

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.

Surprise!

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.