Round Two: Healing Day 23 On The Inside

Healing Day 23 - 7/30/2014

 

Today the love of my life reminded me that they loved me for who I am on the inside, as well as the outside.  That I'm beautiful always, inside and out. Those words made my day.

 

I would never consider myself beautiful on the outside, but normal I think.  We take for granted being normal, fitting in with the crowd.  Last night I was still a little rough looking but went out for dinner and it wasn't too bad.  I'm blending in with normal... almost, just a few little second glances here and there.  I feel so much empathy for people whom for whatever reason feel that they don't look "normal" and hide at home.  Everyday in the normal zone is a blessing and we should never take that for granted. 

 

I ate chicken wings last night for "National Chicken Wing Day".  I have to be careful with my lip because if I wipe it with a napkin too much it bleeds quite a bit, not cool when out at dinner.  Happily I made it through the meal without springing a leak.  I had mild wings with buffalo sauce and garlic, much to my relief they did not sting.  Today I ate a few wasabi almonds and I'm good!  Yeah!!  I think I can gradually go back to eating my spicy stuff.  I'll still avoid getting anything salty or too spicy on my lip for obvious reasons.  The wound on my lip seems to be healing faster if I let air get to it and not cover the wound in Carmex which makes it soft, and tear off and bleed easily.  I put Carmex on the rest of my lips though.  Life is almost back to normal.  People say "I hope its the last time you have to do that."  Its not.  I try to take the time to explain I feel lucky that I have the option to have this treatment because I believe with all my heart it beats the alternative. 

 

My face is still too scaly for makeup.  I'm getting more and more of those soft baby butt spots though. 

 

I  hope that you have a support system and I really think that you should share this blog or others with them ahead of time so that they have an idea of what you will be going through. There is the emotional component to it as well that you should plan for.  If you are normally out and about, being stuck inside is not easy and gets depressing.  It seems like the end of the world the first time you have this treatment.  The 2nd time you kind of know what to expect.  It's not fun, but it's not unbearable either.  Get lots of indoor things to read and watch.  Maybe catch up on a few of those TV series on Netflix that you missed.  If you work from home, you've got it made.  Maybe let your friends know in advance what to expect, and let them come over and bring you ice cream or a Frappuccino or something.  Planning ahead helps.  You don't want to have to run out for something you need in the middle of a rough day. 

 



 



Round Two: Healing Days 21 and and 22 Things are Improving

 

Healing Day 22, 7/29/14

 

I'm starting to look and feel quite a bit better.  I still have rough scaly patches over most of my face, but the redness is fading, and the cracking is calming.  My lip is still cracking and bleeding, but it is gradually improving, as are my spirits.  I made it out to purchase back to school supplies for my youngest and my own classroom today, I stayed out of the sun and went pretty early.  I also wore a wide brimmed hat and sunglasses the entire time.  No one seemed to notice, except maybe my lip a little. If I start to break a sweat, it stings my skin, so I'm still avoiding my workout.  Maybe in a week or so I'll be healed enough for that. CeraVe and Carmex are the only two products I'm using on my face.  I'm so scaly that I know makeup would look horrible and accentuate the flaky skin.  Once things smooth out a bit more I should be able to wear makeup again, in time for school even.  I've made it through the worst part, and the healing is happening fast now. No steroids this time, and my cheek did not crack open.

 

I'm kind of freaked out when I see how much of my face turned red, and had sores.  My lips! Wow!! For how bad this looks, it would look much worse if I had to have these spots cut off in the future.  I'm glad my dermatologist discovered these early and even though it really, really, really sucks, I'm glad I am able to use Fluorouracil cream to keep it under control.  Yes, glad. The 2nd time around, while still sucking big time, was not as bad as the first time for me.  I've heard others say it was worse, we're all different.  I think for me, knowing what to expect and what helped made it easier.  I also had a lot of positive support at home which helped.  Thanks to everyone who helped me stay positive through this.  Giving up is not an option.  

 

Healing Day 21 - 7/28/14

Round Two: Healing Days 18 and 19 Life Under the Bridge

 

Healing Day 19 - July 26, 2014

 

Feeling like the Troll Under the Bridge today.  The being a homebody is the hardest part of this for me.  My lips are a mess.  It's Saturday night and lets just say I got left out because who wants to eat and see my sore covered lips crack and bleed when they're eating? I'm not very cute and fun to be with right now. I try to get out a little bit everyday, just an errand or two, and not in the daylight for more than a few seconds. I make a point to clean house, do laundry, make beds, cook and be productive everyday. I'm trying hard to keep myself up.  I'm grateful this is just temporary, I can't imagine how different my life would be with a permanent disfigurement. 

 

Carmex is helping my lips more than EOS right now.  CeraVe is still my favorite cream now because its less greasy than the others and doesn't sting much. 

 

 

Healing Day 18 - July 25, 2014

Round Two: Healing Day 17 Trying To Staying Positive

Day 17, 7/24/2014

 

Its difficult to eat or smile.  I have to try hard not to smile or laugh which normally I do so easily, because when I do my lips crack wide open. Most of my lip cracks have been vertical, a deepening of my natural lip lines if you will.  Today I'm not quite sure how, but a horizontal crack formed over my top lip.  I went to a tech workshop at school today, most of my colleagues at this one knew what was going on with my face so I didn't feel self conscious about it.  Some are surprised to see me out, but it actually helps keep my mind off of how bad my face feels when I stay busy and productive.  It was nice to have yesterday, in between my workshops to recoup though because its still a little much.  I'm using Cerave lotion this time, the Clinique Super Defense was a little greasy which I can't stand, and this doesn't seem to sting quite as much when I first apply it.  I usually don't know I've cracked and bled until I see it in the mirror.  Instead of washing with soap, I just let the water run on my face, or use a luke warm washcloth very gently to just barely wipe off the dead skin.  It feels nice just to touch it to my skin for a few seconds.  I wait for my skin to dry for a couple of minutes before applying the moisturizing cream. 

 

I'm feeling a little left out when I hear those around me making plans for Saturday night and they don't include me.  I'm usually a pretty outgoing, happy person and being a homebody is difficult for me.  Trying hard to keep my spirits up.  At least I know this is only temporary and the plus side is when I'm all healed up my skin will be beautiful.  I'm glad I've been through it once personally to know that is the end result, at least until my next treatment.   Maybe Saturday night will be a good time to take my little man to another movie or something fun we can do indoors together.  He doesn't seem to mind being around me. :-) Thanks for your emails, jokes and support.  Ya'll make me smile and feel not so alone in this.  No one really understands until they go through it themselves.  

Round Two: Healing Days 15 and 16 It Ain't Over Baby 'Till Its Over

 

 

Healing Day 16, 7/23/2014

 

Going to my workshop yesterday was probably a mistake.  Most people seemed to avoid looking at me at all which made me feel like no one wanted to talk to me.  A few of my old friends were there and I sat with them.  They were around the last time I went through my treatment, and seemed comfortable wit me, and could joke around like normal.  I'm scabbing up.  My lips are a mess.  I don't regret treating them though, especially if it saves me from getting them cut off later.  I'm in quite a bit of pain.  Last night I resorted to taking a Phenergan just so I could sleep.  I did.   You can see my little scabby areas.  The sides of my neck, top of my nose and lips are the most ugly and painful at the moment.  I haven't been doing so much of the oozing and sticking to the pillow case this time.  I saw a tiny bit of blood on my pillow this AM.  I have not felt the sticking to it sensation yet, thank God! 

 

Today I plucked my eyebrows which seems pointless if you look at my face.  It reminded me of something that I thought I should remind you about.  Its simply impossible for your doctor to sit there and tell you about every little detail that could happen. Anyway, point of story,  DO NOT WAX while you are doing your fluorouracil treatment, not on the treated areas anyway.  I had bright red eyebrows for about a month last treatment after making that mistake.  

 

 

Healing Day 15, 7/22/14

Round Two: Day 14 - I Did It! Kinda...

Day 14 - July 21, 2014

 

 

I finished my last dose of Fluorourcil 5% torture cream!!  My lips only hurt if anything, and I mean ANYTHING touches them.  I got behind on my pain meds today, took another dose, and hope that they kick in soon.  Will I do this again?  Yep, still beats the heck out of having things cut off my face, or worse.  Could this have been avoided?  Yep.  What would I do differently?  Avoid tanning beds like the plague, wear a strong SPF daily, forget about tanning.  

 

I played Lego Star Wars on the Xbox today with my little guy.  I had a blast killing droids with him.  Soon, he can hug me again normally without having to stay away from my face.  That's horrible to have to keep your kids at a distance when you want to hold them and snuggle their sweet little faces.  Mostly it was from not wanting to expose him to the medication, not so much the pain, but in the next few days I know that will be the major factor.   Hopefully I'm healed up before August 11 when I go back to work.

 

Tomorrow is my countywide workshop.  I should have some interesting stories to share with you.  

Round Two: Day 13 You Crack Me Up!!

Day 13 - July 20, 2014

 

 

 

The pain and burning is becoming severe, I went and just sat in the living room last night because I couldn't sleep.  I'm taking Hydrocodone, but it was not enough.  Normally I don't take any medication at all, and when I do they seem to work really well on me.  The pain is just really severe right now.  Best description I can give is it feels like bee stings. My face is actually much more red than these photos show. I've been lazy and using my iPhone for the photos.  I'll try to take a few with my real camera tomorrow which should show it better.  I have a lot of red under my eyebrows which makes me glad I treated that area. Since I was a teenager I have always invested in good sunglasses and worn them faithfully.  I'm kind of shocked at the damage under my eyebrows, and concerned that perhaps my eyes have been exposed to more sunlight than I would have liked as well. I also treated the top portion of my neck, back to my ears with fluorouracil.  I now have some bright red patches in those areas as well. 

 

Notice the marks around my upper nose where my glasses rested.  I've stopped wearing them because of this, I'm wearing my contacts instead.  I take my contacts in and out between treatments when the medication is off of my face.  The nosepiece on my glasses is plastic, not metal, so I was not concerned, but obviously it reacted with the medication.

 

I've started cracking.  Especially around my mouth.  If I smile, laugh, sneeze or yawn I crack.  I chose to watch a really funny movie last night. I laughed so hard that not only did I crack up, literally, the tears burned my cheeks like acid.  Good times.  I don't want to eat anything that is salty like chips because I'm afraid to get salt or spices in the cracks in my lips.    I tried to logically talk myself out of this morning's treatment, remembering what my doctor said at the end of my last round.  My boyfriend reminded me that the doctor was aware of my past and knew what he was doing when he once again prescribed me 2x a day for 14 days. 

 

Today is National Ice Cream Day.  I think I'm down with that.  Only two more treatments.

Round Two: Day 12 Radioactive

Day 12 - July 19, 2014

 

There is a popular song this summer "Radioactive" that my boys frequently sing.  It often reminds me of my face.  I don't think it looks as red in this photo as it really is. 

 

I feel very nauseous this morning.  I took Phenergan for it a couple of days ago for it, but it made me feel jittery and like something was crawling on me, then knocked me out.  I slept GREAT! Not sure I can handle taking that again though, the jitter things were horrible.  I always seem oversensitive to medications.  

 

24 Treatments down and 4 more to go!!!  I'm in the homestretch now!  Next week I have two teacher workshops to go to that I'm dreading.  One is a district wide conference at another school where most people won't know me.  I'm really dreading that one.  The other one is at my own school where I know everyone and at least they know my story with these treatments so its not so bad.  My reaction as far as my face being red is not as bad as last time.  I've used no other products other than the fluorouracil cream on my face, I just wash gently with warm water splashes in the shower and a gentle wipe with a warm washcloth.  I use my EOS mint lip balm like an addict all day and night.  My bandana really helps keep my hair from getting in my face and sticking to it, I couldn't handle this without it right now.

 



Round Two: Day 11 Burn Victim

Day 11 - July 18, 2014

 

Ouch!!  It hurt's.  Today I took my youngest son to see the Planes Fire and Rescue movie.  It hurts to go in the heat and sunlight at all so I dash from building to truck, and back into a building.  Since today was the premier of the movie there were a few Forest Service firefighters on hand to meet the children. My son proudly told them his mom used to be a firefighter.  I talked to them for a minute about the fires up at home in Washington State, then took Riley to get popcorn. 

 

While we were standing in line I noticed them glancing our way and talking and didn't think much about it.  I know I look kind of odd, and actually when I was speaking with them I forgot how bad I looked.  It hit me when we were in the movie.  They probably thought I burned my face up when I was a firefighter.  I was very amused the other day while watching a YouTube video of a Fluorouracil patient who was making jokes about working at the nuclear power plant.  Of course my fun was unintended, although equally amusing. 

 

Here is the link to the referenced video clip.

http://www.youtube.com/watch?v=wut-ywrQcIA



Round Two: Day 10 - Whoop There it Is!

 

Day 10 - July 17, 2014

 

 



Today I was busy, jamming to get free Kenny Chesney tickets at the Floribama next month, and I was so absorbed in my very important task that I didn't really notice how bad my face hurts, or how sick I felt.  Distractions are a good thing!  I hope I am all healed in time to actually attend his concert on the beach on the Florida/Bama state line......in  mid August.  I'm staying optimistic. I'll be the one in a big hat, shades and a long sleeve cover up of some sort, assuming I get tickets that is.

 

I'm applying the medication just under my brow and it obviously runs down a bit.  I'm glad I'm treating that part under my brow this time.  Might as well get rid of all this stuff while I'm at it.  My lips are very tender.  Only 6 more applications to go! Whoo Hoo!!

Round Two: Day 9 Give the Kid a Cigarette Already

Day 9, July 16 2014

 

So..... it's July in Pensacola, Florida  the Redneck Rivera, and my Facebook is lighting up with the beautiful beach pictures of my friends and their kids at the beach.  Yep, that was me once.  I worked hard to have one of the darkest tans out there. I actually felt competitive about it.  I was a dumbass. Now I see mothers taking their daughters to the beach to work on their tans. Really!? 

I used to go to the tanning bed with my own mother when I was young.  We didn't know then what we do now.  Science has come a long way in 20 years.  If you are dumb enough to teach your kids to get a tan to look good, why stop there?  Give the kid a cigarette already!  Light those puppies up! That's pretty stupid huh?  You wouldn't give your kids a cigarette, but how is one different than the other?  They both cause cancer.  I'm not talking about the people at the beach who enjoy being outdoors and slather their children in a strong SPF, and take other measures to take care of themselves and their children's skin.  I'm talking to those who purposely set out to tan themselves and their kids, or set the example that tans are desirable for their kids.  There is peer pressure from society, no doubt.  How many summer songs mention cold drinks and tans?  We've got to be smarter than that, especially when it comes to the examples we are setting for our children.  If you are "working" on your tan,  or valuing your tan, what are you teaching your teenagers?  What is the difference between that and glamorizing smoking in front of your children?  Enough preaching, it's MY blog and I just had to get that out.

 

Today I've felt very nauseous, fatigued, and my face stings like a...... well, lets just say really bad.  Yesterday, after my shower, I gently held the soft towel up to my face and it felt like hundreds of small bee stings. The bandana on my head is to keep my hair from touching my skin, I can't stand for anything to touch my face.  Kisses and hugs are off limits! I also don't want anyone I care about to be exposed to the poison on my face.  If I had known then what I know now.........

I will have to repeat this process over many times to stay alive.  I think about how many times I burned my butt in a tanning bed, and I'm very aware there could be cancerous spots on my body that I miss.  Fluorouracil treatment is horrible and painful,  but it gets better, and I know that this round.  I have no doubt I can do this.  It beats the hell out of having things cut off with razors and needles and all that.  This is not even an option on my face, given that it is spread evenly over my entire face. I have read the blogs of people who have to treat their bodies with fluorouracil and figure that is in my future as well someday.  I can't imagine having my clothes rub on my skin. The people going through that have my utmost respect and admiration. 

 

EOS lip balm still soothes me.

Ice coffee makes me happy. 

I need to buy straws because anything I eat or drink gets into the cracks in my lips, boo salt.

Round Two: Day 8 Cold

 

Round Two: Day 8 - 7/15/2014

 



I'm starting to feel uncomfortable.  This morning I set up the dining room for my 6 year old's birthday party (family only) tonight, ran to Walmart and did a few chores.  I ran into a friend in Walmart who saw my face and asked if it hurt. 

 

I'm in Florida remember, notice my sweatshirt.  I'm freezing again.  My face hurts, stings hurts, and I feel very nauseas today as well.  I cringe if a child, pet or hugging person gets too close to my face. I'm cracking around my lips, and  starting to get small red spots.  Red dots randomly decorate my cheeks, eye browns and jawline like bulbs on a Christmas tree.  I wore a hat outdoors today, and tried to run quickly from inside the car to inside a business.  I don't think I can go out much longer, if the sun hits me it hurts, and makes me pretty red. 

 

So far I'm still not as bad as last time.  It did take a little determination to apply the fluorouracil cream this AM.  It's like putting salt in a wound.  I must thank the other bloggers out there for sharing your own stories.  It's helpful to read other's experiences, because we all hit different hurdles and find different methods to get over them.  

Round Two: Not As Bad As The First Time

Day 6, July 13, 2014

This morning I was pleasantly surprised that I'm not looking or feeling too bad yet.  I felt a little nauseous still, and my skin feels sensitive but not painful yet, much like how a sunburn feels. Eating seems to help the nausea, and iced coffee tastes great.  About an hour or so after applying my morning dose of fluorouracil I got the chills really bad again.  I put on a heavy sweatshirt and socks and watched TV for an hour and it seemed to subside.  I'm pretty comfortable at the moment.  I have not had the headache for a couple of days now and I am grateful for that.  The most soothing thing is my EOS lip balm.  I am not currently applying any products to my face other than the fluorouracil twice daily.  It makes my skin look oily all day, but I can't really complain about that, its not suppose to be a spa treatment.  Every day that I'm not in pain and can sleep is a blessing, one less day than I had to endure the first round, so I'm a happy camper. 

Round Two: Then and Now

Day 5 - July 12, 2014

I was extremely glad I went to the concert last night.  Who doesn't love reggae, and it did succeed in getting my mind off my face and not feeling well.  Staying busy with other things is really important. Luckily the lights at the venue were red so I blended right in.  The AC was cranked and the cool air felt soothing on my face.  I didn't wear any makeup, except for eye liner and mascara.  This AM I noticed that there is a huge difference in my skin from day 5 of this 2nd round vs day 5 of my initial treatment three years ago. 

I'm putting plenty of medication on and even getting into my eyebrows and the edges of my lips this time because I could feel the rough skin, which is the manifestation of the precancerous cells, in those areas.  I realize it is probably really going to suck, but treatment with fluorouracil is really going to suck anyway, so I might as well get it now rather than have to deal with needles and stuff later.  Why am I not looking as bad as last time?  My doctor told me during my appointment that he didn't expect this round to be as severe as last time.  When I reread my blog from three years ago, I noticed that he had mentioned doing a lighter dose in the future, but that he actually prescribed the same therapy this time as last time. I also noticed something else, when I looked back at my blog this morning my day 5 photo from this treatment looks nowhere near as red or inflamed.  My day 4 photos look more similar.  In my blog entry from day 5, 2011 I mentioned that I had put on make up for a photo shoot at a wedding on the 4th night, then on day 5 I was considerably more red.  I'm relieved that I chose not to wear makeup last night.  Its not for certain, but it does seem that perhaps the makeup made things much worse.  I'll pass on testing that theory.

I'm starting to develop an aversion to spicy food and hot food (temperature wise) in general.  In the first few days of my treatment I made sure to get those in, so I should be good for the next few weeks.  Normally I drink coffee every morning and love spicy food.  The past two mornings I chose to skip my coffee, I just can't stand the idea of anything hot near my face or lips. 

My headache has been gone today, which is a huge relief. Today I still felt a little nauseous, but its nothing I can't handle.  Getting out of the house now as much as possible, before it gets bad has been a priority.  Today I had a great lunch out with tons of sweet tea, which tasted so wonderful, cool and soothing.  Later I went to a movie, in which the theater had the AC cranked and it was nice and dark.  I got the chills really bad between the two and felt totally exhausted.  After a nap buried under many blankets and I felt much better.  I've been getting spells where I feel very cold every afternoon.  No one else is feeling cold though, it seems to come a couple of hours after applying the fluorouracil. 

Yesterday I bought one of those EOS lip balms , it feels WONDERFUL!!

Round Two: Nearly Three Years Later

Before my 1st application of Florouracil 5% cream for my 2nd Round of topical chemotherapy on my entire face 7/7/14. It's been nearly 3 years since my first round. I've been instructed by my doctor to apply a small amount twice daily.

Day 1 -1st morning after one treatment the night before 7/8/14.  Not much happening yet, just a tad bit of pink in my cheeks.  I reread my Blog to refresh my memory and get ready for the next month.

Day 2 - 7/9/14 feeling a little sensitive like a light sunburn, just a little more pink.  Today I got a headache that wouldn't go away for anything and felt a little sick at my stomach.

Day 3  - 7/10/14 Some light red spots are starting to stand out.  My skin burns if I go outside, it's July here in Florida and in the 90s.  The headache is back with a vengeance.  I took ibuprofen and Tylenol which didn't help.  My skin is just a tad bit red still, I'm pulling my hair out of my face because it feels irritating on my face.

Day 4 - 7/11/14 I'm getting some red spots on my cheeks and a few spots around my lips.  Today water made me feel sick, but in the evening the headache and nausea seemed to subside a bit.  I don't look too bad yet, I'm going to brave it while I can and head downtown to a reggae concert tonight for a bit.  Hopefully they have the AC cranked and maybe in the dark no one will notice how red I am.