Thursday, December 23, 2010

Day 58 - December 23, 2010

So it's almost 40 days after my last treatment and rougly 60 days since I started the whole thing.  Still have some discoloration, but that's all and I guess my reaction to the Efudex means it will just take a little longer for all to blend together.  Summary is I'm glad I did it.  In retrospect, sure doesn't feel like this started 2 months ago.  A lot can happen in a short time and that's what I'd pass along to people.  In the big picture, a few weeks of awkwardness and discomfort were easily worth it to me.

My mom shared this funny...I think I may have thought it funny when it seemed I looked like this, but there's no IS funny today!
"This is one of 82 photos in a Powerpoint presentation I received.  Many of them are fascinating.  This one reminds me strongly of a certain young woman I know who recently endured a traumatic ordeal.

Thursday, December 16, 2010

Days 44-51 December 8 - 16, 2010

Well, not much to report.  About a week ago I started wearing makeup again and also using a Skinceuticals product that's supposed to help restore skin....Phloretin CF.  Still have the red discoloration and my last treatment was basically a month ago.  My skin is certainly healed, but feels like forever for the skin tone to even out, but it is...just taking longer than I wish :)

Day 50

Wednesday, December 8, 2010

Day 36-43 December 1-8, 2010

Every day I notice new improvement.  Down to just a couple sores to heal this past week.  The last scab came off my cheek Sunday (Day 40) leaving a little divet.  I've read of some scarring and just hope that's not the case with me.  Still covering my face with Aquaphor at night, but now putting on a moisturizer during the day.  I have years of habits to overcome, namely putting sunscreen on regardless.  I've gotten used to my makeup & moisturizer having SPF, but when you don't put it on (which I haven't for weeks), I need to grab sunscreen!

Day 42
For the first time, I didn't wear medicine today, but wore a tinted moisturizer instead - yippeeeee!!!  Tonight I noticed 2 new spots though and I'm going to treat them as acne for now.  Dr. did caution me the steroid creams (which hydrocortisone is) can lead to acne, but worse still...glaucoma.  I only used the HC cream twice heeding her cautions.

Day 40
Could've really screwed this up and looks like I'm lucking out with just a warning instead.  Leaving the house before dawn in the cold didn't make me think of sunscreen, but a couple hours of in/out at the White Rock Marathon did!  When I finally realized it, I had another panic attack.  Fears of scarring because my color still hasn't stabilized and the wind/sun scared me death when I finally "woke up."  Pharmacist said put on hydrocortisone cream (told him I had some prescription 2.5%), wait 30 minutes, then follow with Aquaphor.  Interesting, I told him I had the triamcinolone steroid and the mupiricin ointment, but he said plain ol' HC cream.  I did it and 2hrs later the decrease in redness was astounding.

Tuesday, November 30, 2010

Day 31-35 November 26-30, 2011

Noticing improvement every day!  On Day 32, did a 200k bike ride starting at 3:30pm, so most of it was done at night.  It was cold and a bit windy, but did not notice ANY setback in my face.  I globbed on Neutrogena Sport Lotion SPF 70 on top of the antibiotic ointment for those 2hrs of sunlight.

DAY 35 - Still keeping antibiotic ointment on my face 24hrs/day

DAY 34 - Made a huge mistake today and I think my face issued me a warning without any real danger.  Was outside this morning 8:45-10a for the Stock Show Ticket Office Opening and was in/out of the morning sun.  Definitely redder!  Panicked feeling I had really gotten burned, but 24hrs and the color is calming down a lot.

I'm wondering if my cheeks got enough "cooking" from the efudex.  My forehead never peeled and neither did the outsides of my cheeks and my cheeks kinda worry me. 

Tuesday, November 23, 2010

Day 27-30 November 22-25, 2010

DAY 30 - Thu Nov 25
Days are running together!  Noticeably less pain washing this morning, still hurts, but not like it has been.  I even used my hands a couple of minutes to actually gently rub because I can see little pieces that want to come off.  Definitely progress especially around my nose and mouth.  Can't seem to remember to take pix before I goop back up.  After washing & drying, I'm pretty focused on getting that goop back on!  Right now, I'm pretty much 1/2steroid & 1/2antibiotic ointments, but first I line my undereye with Aquaphor to help protect it.

DAY 29 - Wed Nov 24
Still seeing progress.  Still bleeding pretty freely after washing off the goo each morning, but it hurts less!

DAY 28 - Tue Nov 23
Saw Dr this morning and she reiterated how severe my reaction was, which of course all I care about now is (1) did we at least kill all the cancer cells and (2) severe reaction translates to longer healing!  She recovered well when I asked if I could put sunscreen over the meds and ride this weekend (it's only Tuesday right now) and I could tell she really just wanted to yell "WHAT? R U NUTS?"  Apparently the steroid can really amplify negative effects from the sun, which could backfire into dark coloring/splotches.  Sounds like if I feel up to tackling the weather, I should just ride overnight til I'm healed up, which is do-able.  Continuing to have spots bleed during cleansing, but at least the blood is getting there and that can only heal it faster, right! 

Progress Seen!  I definitely have fresh skin (not raw!) to the sides and below my nose and spots that have normal color on my lower cheeks.  Even the normal color areas still hurt and have splotches, but maybe they'll clear up next?  Dr stresses to keep my face all gooped up and smiled when she said she's looking forward to seeing me with pretty skin and a smile, hopefully sooner than later (me too)!!  Reasons for getting off the steroid are (1) can lead to acne, NOT good with no skin! and (2) staying away from the eye socket area, because it can lead to glaucoma (and something else, but I can't remember....glaucoma was bad enough!)

DAY 27 - Mon Nov 22
Keep thinking all the skin has sloughed off, but still more continues to come off.  Both cheeks and the areas outside both eye are definitely the most raw and most painful.  Working to decrease my steroid use and increase the antibiotic.  Doctor in the morning!

Wednesday, November 17, 2010

Day 23-26 - November 17-20, 2010

DAY 26
Got the antibiotic (Mupirocin) ointment filled today and after dabbing some more "goo" off my face, applied the Mupirocin (left the steroid at home today) and hours later, it is STILL burning!  I am NOT ready to let go of the steroid and she wants me off of it in 3 days.....idaknow about that.   I think most of the top layer of skin has all pretty much gone and the most recent spots are definitely more painful.  I think that's a good sign....means the other spots are maybe a little farther along to being healed! 

Not going to ride tomorrow (which I was hoping to a few days ago).  One, I have zero interest in the pain of wind & weather and Two, my skin is raw and sure don't want to risk infection!!!  Even "I" can pass up a bicycle day when it's called for :)

So, this is my best smile so far and it's definitely creepy!  Still, it's the best I can do and it's a definite improvement :)

Saw the Dr today and asked about something I'd read about mixing the steroid ointment w/antibiotic.  Gave me a prescription for Mupirocin and said I could start mixing them in a couple days but also cautioned.... I do need to get off the steroid ointment and she's hoping for next Tuesday, which will be 1 week after I started it.  Must admit, with the pain right now, Tuesday sounded like a long way away until I realized this is already my 4th day on the steroid and the pain is still really rough without the steroid on my face.  Sure hoping for lots of good growth on my skin in the next 3 days!!  Been drinking a spinach smoothie each morning with added goodies and this morning I added a powder called "Perfect Food."  Want to give my body every piece of ammunition it can use to fight this and heal quickly.

Got asked today about scarring and it coincidentally was at the same time that a patch of "gooey" came off my face leaving the raw skin behind, so I actually called the Dr to ask.  Was reassured that "no" scarring was not something they were worried about, just healing me as quickly and pain-free as we could.  Back to that whole "severe reaction" mess.

Ug.  The yellow goo keeps forming, but when it comes off, it's just raw raw raw.  I keep everything moist with either the steroid ointment or Aquaphor, but it sure stings.

One full day without the Efudex!  Got a little cocky yesterday because the steroid ointment took so much of the pain away that I guess my pea-brain decided it was also speeding the healing (one reason I don't like taking pain medicine for injuries...they make you feel better than you really are and then I can get stupid).  The steroid made the crusty area prett gooey, but what they were were scabs over a wound, so when I cleansed my face and a bunch of that came off sooooo effortlessly, it left raw skin there.  oops.  Plus, within a couple of minutes, my face was screaming and I couldn't get that steroid ointment back on my face fast enough!  Luv me the steroids :)

Called Dr. again the next day to make sure using the steroid ointment 2x/day would be OK, even though she had verbally said 1x.  They REALLY are concerned with using it 2x/day, but said OK if that was working best for pain management.  I made my own compromise tonight.  I've been cleansing my face, but chose not to tonight, leave the existing steroid on and just supplement with Aquaphor.  Maybe just cleanse/rinse each morning is all.

Tuesday, November 16, 2010

Day 22 - November 16, 2010

DONE!!!!!  I was more terrifed than I realized how much I feared Dr. asking me to continue even spot-treating sores that are still there, but she said no, you're done.  I'm hearing now that my reaction may have been more severe than normal, which is fine with me.  So long as the pre-cancers are dead, I'd do it again in a heartbeat.  Dr. was very reassuring and empathetic, commiserating with my pain and even going so far as to talk about not using Efudex on me again, or if so, we'd probably do a lower strength.  Makes sense to me.  She was also surprisingly receptive to learning from my experience and sharing it with others, which of course, is ideal.  I felt like I had almost all "on the job training" and if I can shortcut someone else's learning curve, I'm all for it.  Turns out she is very receptive to me being a little bit of a learning process with them, which I'm totally fine with.  I was so appreciative of her being so open and willing.

Lots of times I try to focus on 2 can I learn from this and how do I get back to "normal" asap. 

Dr. answered the second part right off and recommended a prescription steroid ointment to immediately address the swollen, painful skin.  Done.  Doubled it with suggesting vaseline or Aquaphor (I'll use Aquaphor) to loosen up the crusty areas at night.  They even asked why I didn't use Aquaphor during the treatment and I told them I'd read of another patient using Aquaphor, but then the pain of trying to wash it off to re-apply medicine was too painful.  I chose to just stick out the pain and make sure the medicine stayed on clean dry skin!  She asked to see me again in 3days to check my recovery.

(couple hours later)  Eureka!  I went straight to pharmacy to get the steroid and put it on immediately upon arriving at work and I SWEAR I can tell a difference in 1 hour!!!  I can make a creepy-looking smile now, face feels looser and even the crusty spots are turning (kinda gross actually) a little gooey.  THANK GOODNESS.  The steroid was painful the first couple minutes, but the relief now is noticeable.  Sheesh, if there was a way for my mind to help, I'd be back to normal before the weekend!  What a gi-normous difference this steroid ointment is already making.  So far, co-workers are trying so hard to talk to me "normally," but I'm looking in the mirror all the time right now (looking for those signs of progress!) and I really am pretty gross to look at.  Fire engine red, completely greasy and gooey crusty spots.  They're being good sports.  I'm wondering if they'd rather me go home, but we're busy enough with the Show coming up in 2months that we're working Saturdays, so my gut tells me missing 1/2 day work for nothing but vanity isn't a good thing.  Plus, I think this ointment is going to make a huge difference by tomorrow :)  (must be feeling a little better.  For the first time, I'm tempted to take another pic & see if I could look a little better!)

This steroid ointment is making my day better and better.  It continues to help the pain, swelling continues to go down and since it is making the crusty areas gooey, I'm looking forward to (yes, very very gently) washing my face tonight.  I think I am WELL on my way now.  Heck I can come close to a half-smile now :)

Monday, November 15, 2010

Day 21 - November 15, 2010

I'm crossing my fingers that tonight is my last treatment!  Dr. appt first thing in the morning.  Swollen enough now that talking is done very carefully and my face's idea of a "smile" looks lame indeed, so I just feel like a frozen expression like below.  My biggest fear is that the sores that have shown up in the past few days will lead her to telling me to do more treatments.  Absolutely the last thing I want to do.  As it is, I've been doing a countdown each time to get me through the most recent cleansings and reapplication.  Not sorry I did it and if I need to do more to kill these little #!$%^@, I absolutely will.  Just hoping I don't have to.

Yesterday I was at the FW Marathon all day and buddies (& strangers) were great.  Nothing but good wishes and no wierdness.  One little boy asked about my face and it actually made me feel better to tell him I had medicine on my face.  He looked at me and asked if it hurt, I said yes, then he said, I hope you feel better soon and we all went back to serving hot dogs!  Kids really are something.  Still, it was awkward not being able to smile or talk very well.  C'mon Tuesday! Tuesday Tuesday!

Today, face was just way too sensitive and sore to put any make-up on, so I get to go to work in all my "naked glory."  Folks here are trying to act like nothing's different, but I know it's hard to treat me "normal," but an A+ for them trying :)

Saturday, November 13, 2010

Night 19 - November 13, 2010

Swollen and sore enough especially starting yesterday that it's getting hard to open my mouth.  I can only take little bites (which is not necessarily a bad thing!), talking is awkward, can't smile, trouble brushing my teeth, etc.  Still counting down :)

Rode a short 70miler today mostly because I haven't been able to work out this past week inside.  The minute my body temp goes up, my face feels like there's acid on it.  However outside with the chilly weather it mitigates that some and my mental state just doesn't have it to ride after work at night.  I'm just so glad to be home, I don't even want to go ride.  I'm a big one for living my life and doing what I can to not let "stuff" interfere, but must admit I'm getting uncomfortable in public now.  With just a few days left, I'm not worried at all, but felt wierd at Spaghetti Whse eating lunch today with friends.  Everyone is GREAT, no wierd looks/comments, just my own mental hangup is all.

Friday, November 12, 2010

Day 18 - November 12,2010

Counting down now!  3.5days left.  My last treatment is supposed to be Monday night and I meet with the Dr. first thing Tuesday.  Goal is for her to say "yep, you can stop."  I've got new sores around my eyes, but I can't help but wonder...are they really cancers or just a little too close to soft tissue and I pixxed it off?  New ones below and to the outside of both eyes.  Still have others that I'm ready to go away!

Tried to use my washcloth as a buffer last night.  I still believe some of the dead-looking skin is ready to come off, but since pulling at the dead skin is a no-no, I gently used the washcloth to try and get some skin off.  I did get some, and guess I did one too many passes over my face because it was throbbing pretty good after that.  Another rups I guess.

Called Dr. office today (talked to Sarah) about continuing.  Mom brought up a point that maybe I shouldn't be treating the areas that appear to be moving on to normal, but Sarah says continue treating the whole face because some areas react differently over time.  I do have a couple new sores, so choose to agree with Sarah right now.  Still my skin is pretty swollen and definitely irritated.  I'm ready to let it heal :) Tuesday, Tuesday Tuesday!!!

Thursday, November 11, 2010

Day 16-17 - November 10-11, 2010

Getting very annoyed with this, but I SWEAR I still see progress!  Very few sores now, but 2 new ones came up yesterday.  1 under my right eye and 1 to the outside of the right eye.  Good - I want them all out!  Still painfully dry especially around my mouth.  I thought I worked hard to keep away from the corners of my mouth, but it's still bad there.  Maybe I DID stay away, but cancers were there, so the drugs got there anyway?

Last 3 or 4 days noticing lots of the flaky/dead/dry skin is coming off and I thought when that happened, it wouldn't hurt so much, but it's the opposite.  Face just feels like it's on fire all the time and the skin is pretty swollen.  Guess it deserves to be pixxed off :) 

Amazed how I used to be able to very gently slather the meds on a bigger area, like my whole cheek.  Now, it's sore enough that I do each section in about 4 stops!  Just do little area, then another.  Just hurts too much to drag my finger very far. Surprised me since most of the sores are disappearing.  Understood it more when there was so much deadness on top that would "grab" but a bunch of that is gone.  Still I guess it's just cuz it's plain ol' skin that keeps getting (as someone told me yesterday) poison put on it twice a day!

Tuesday, November 9, 2010

Night 15 - November 9, 2010

OK, I'm more than ready for this to be over.  I'm really looking for progress because it does look like some of the little sores are going away, but every time I even think of touching some little flakey, what looks like, dead skin, it bleeds.  And tonight when I tried soaking my face to loosen some of those areas so they might come off with the washcloth, it kinda backfired.  Felt like I was dragging sandpaper across an open burn.  Lesson learned!  I got a little cocky thinking i could "help!"  Wrong again.

Aspirin did seem to help last night and today, so I'm just going to plan on that each night from now on.  Been surprised at some things that irritate my skin, but I've been gently applying some makeup to even things out, but it kinda burned this morning.  I'm guessing (hoping?) it was just feeling annoyed with me because I really do feel a little better going to work with some coverage.  Still beet red.

Read another blog from someone that used Aquaphor for the pain, but cautioned it's a nightmare to wash off. It's petroleum-based, so I'm thinking of soaking my face in it the minute I don't have the drugs on there.  Anything to help this dried, dead and painfully tight skin peel off!  Right now, I don't want to deal with more to wash off :)

Last appt with the Dr. is supposed to be next Tuesday morning, so if all goes well, a week from tonight, I'll be drug-free and moving on to healing.  Looking forward to THAT part.

Monday, November 8, 2010

Day 14 - November 8, 2010

No clue why, but today my face looked and felt like it was on fire all day.  So bright bright red, felt so hot and itchy, but I swear I can see some progress. Last couple of showers I forced myself to (gently!) use a washcloth hoping some of the skin flakes would come off and tonight I saw a few in the wash cloth....kinda like debriding a burn, but of course nothing as serious as that...just the same premise in my head.  Clear some of the skin away to make room for the new skin and hope the medicine is getting to the bottom of things.  Took 2 aspirin tonight in hopes I'll sleep better because the itchy/burny feeling seems worse "now" when I'm trying to settle down for the night and go to sleep.  Pretty much trying to drive me nuts with the itchy/burning.

Day 12-13, November 6-7, 2010

I was scared to death this morning!  The thought of a 200k today and the fear of my face hurting for 9 hrs instead of just 15-20 minutes had me in a panic this morning.  Sunscreen burned and that set me off.  I cried off/on all morning and at the ride start.  Just completely terrified.  Took my own car in case I had to turn around.  Ride buddies were greatness of course!  Rani's boss did this, so she was reassuring and just having friends notice and acknowledge instead of all the ignoring it, was actually pretty comforting.  Thank goodness it was a chilly start.  Started about 40degrees today and I think the high was about 70 and the cold that I feared would be like little ice picks on my face was the opposite.  Felt good!  Even when sweating, the chilly air kept me from getting too hot.  I kept shucking clothes to make sure I didn't get too hot and it was a lifesaver.  Had some chilly moments, but 100x better than feeling like acid on my face.  Whew!

Learned when I reapply sunscreen though....I wasn't thinking and just started applying - OUCHHHHHH!!!!!  well of course, I realized in a minute or so, I was just rubbing that salt and grit around - what an idiot!

On Sunday, I was pretty tender-faced, so opted for a movie instead of a short ride.  Sun in the car windows felt overly hot, but tonight I DID see that I'm getting some flakes while washing my face.  I'm seeing that as progress!!  My understanding is the dead cells will flake off as they're killed leaving the good skin underneath.  I think that's another reason things are so tender?  Maybe there's some new skin coming out!!!! 

But, oh, the ITCHING DRIVES ME CRAZY AT NIGHT!!!!!!  It itches during the day too, but I guess there's other distractions, but trying to go to sleep is <bleep> <bleep> <bleep>!!!

Friday, November 5, 2010

Day10-11 - November 4-5, 2010

Pretty owe-y!  Much more noticeable itching and I can't "scratch" per se.  For the last few days, I could just kinda "poke" the itch using fingernail tip or piece of paper or such to keep my hands off my face, but now most of those spots are too sensitive, so just brushing with a fingertip works.

Still applying makeup, but it's not covering as well. :)

Rode my trainer last night again and noticed the stinging started before the sweat.  I'm guessing it's got something more to do with when my heart rate goes up, body temp goes up, etc.  I really really want to ride my 200k Saturday!  Not only is it our last official Saturday off work for months, but it's supposed to be a beautiful day and I (of course) want to keep my multi-year streak of 200k's for consecutive months intact, not to mention seeing my friends.  Planning to do what I can to mitigate the pain with aspirin, rinsing sweat off every couple hours and re-applying sunscreen, which I plan to apply heavily even though it's November.

Wednesday, November 3, 2010

Night 8 - November 3, 2010

Really feeling it today.  The sun through the car windows is verrry noticeable for starters.  I'm not quite halfway through the treatments, but have no doubts whatsoever about completing (which several including the Dr have warned me that lots of people can't do the full time), but it is getting pretty uncomfortable.  A really harsh sunburn is my best comparison so far.  The part that's the most annoying right now is the sides of my nose.  Who'd've thought blowing your nose would hurt?!  Upper lip has gotten really dry and tight and probably the biggest thing today is how much the washcloth and towel hurt while washing.  CAN'T!

Since I'm feeling like such a sunburn victim, decided to splurge on some makeup today and was really surprised how much coverage my "minimum coverage" makeup provided!  I used some of the green coverup too.  Still, feeling a bit guilty because even though Dr. said it shouldn't hurt, the FAQ's say don't use any product. I'll try to keep it to a miminum, but the makeup made me feel I really wanted to wash well. (and the only thing I can use is my fingers.  Tried the "blush brush" and that ain't happenin, even those soft bristles, don't feel good, so I'm not worrying about it.)

Hair spray stung this morning and tonight I rode a whopping 40minutes on the trainer.  Not hard, cuz I don't have much juice, just wanted to sweat a little bit....and sweat stings!  Not enough to keep me from riding, but enough that I'm glad I'm finding it out now and not on a longish ride Saturday. Spots are definitely more pronounced.

Just reminding myself, I'll be glad I did this and glad when it's over.  If it can save some being cut on later, I can even see why some people do it bring more skin cancers to the surface.  Just wish I wasn't so run down doing this.  Probably be a walk in the park if I had some juice in me :)  In my head, this really hasn't taken very long and I'm almost 1/2 way through the drug already! 



Monday, November 1, 2010

Day 7 - November 1, 2010

Been a week now!  So 2 more weeks of the treatments.  Took pictures again this morning, but I don’t see the changes show up as much in the pictures as I do in the mirror.  Just look sunburned and the red spots are certainly more red!   Haven’t put any makeup on in 3 days.  Today, just put on some tinted moisturizer to kinda even things out.  Don’t feel uncomfortable with my “looks” at all so far.  Certainly no fears of going out in public, which I was cautioned to realize might be an issue.  Feeling pretty relaxed and at ease about the whole thing right now.