Round 3 - Last day of Putting It On! - Application Day 14

Application Day 14 -  Today I have to take two pain killers, and even then it still stings.  The pain killers are helping me sleep at least, which passes the time.  Today is the last day I have to apply the Fluorouracil 5% cream.  It was so difficult to do.  My oldest who just got back from Canada came to visit and help me out today, which helps.  Anything that keeps my mind off of my face helps.  Hopefully in a week I'll be feeling and looking much better.  

I can live on popcicles and Icees at this point, I don't feel like eating, but I keep it up because I know I should, if not for me, for my boys.  Tonight I'm making a cold pasta salad with ranch, frozen peas and tuna.  I just want mild, and cold food.  I think that sounds like something I can handle.  I'd gladly just have an Icee, but for social sake, I made a salad.  Now I'm really sleepy again and off to take a nap until dinner.  

Round 3 - Measles - Application Days 11, 12 and 13

Day 13 Application Phase - Sleeping Beauty.  I'm sleeping my days away from the pain meds and up late at night which is ok with me.  I've had two friends tell me I look like I have measles.  I went out this am to pick my oldest up at the airport, put gas in my car, then had to get straight home, because even with the pain medication I was feeling it.  I only have 3 more applications to go, one tonight, then two tomorrow.  I'm hoping by next weekend I'll be feeling and looking a bit better.  It's a little to stingy for me to read and not think about it, but I'm discovering TV, which I never watch. Survival shows are entertaining, today it's naked and afraid.  I hate to think about the places these people might have to apply Fluorouracil someday!  Using lots and lots of Carmex and EOS, my lips look like they are rotting off.  Sexy!

Round 3- Application Day 13 - June 14, 2015

Day 12 Application Phase - Thank G-d for my friends.  My medication is causing me to sleep a lot.  I hardly ever watch tv, but today when I was awake I watched Alaskan survival shows and ate Popsicles with the AC cranked.  That helped.  Seeing sunlight, and tanned people actually makes my face feel hot.  My lips are in bad shape, and the Popsicles help so much.  I thought I had overstocked on them, but they are only 20 calories each, so I'm chain eating them.  My wounds are oozing now, and I noticed I was oozing onto my pillow case last night.  I used to by white sheets.  Of course my face would ooze, crack and bleed, stick to it, etc and I'd ruin my pillow cases.  Over the past year I've changed to dark colored sheets and I'm so happy, no visible nasty marks on them in the morning, though I'll still need to change them.  At least I didn't ruin a whole set of linens.  One friend brought me over a Starbuck's Frappucinno, then another brought me an Icee later in the evening.  These are pretty much all I'm eating at this point, and they were wonderful.  I didn't really want to go out in the heat to get them, and my face obviously draws attention now.  

Round 3 - Application Day 12 - June 13, 2015

Day 11 Application Phase -  Later in the afternoon I took my son to a friend's house where he could go swimming.  It's very hot today.  Just breaking a light sweat stings, so I could only sit in the shade for 10 minutes or so, then I'd have to either switch places with my friend, watch from indoors, or bring my son in for a few minutes.  The pain killers help, but not completely.  Hot food, even temperature hot sounds terrible to me.  I'm living on Popsicles and cool drinks.  It's much easier to go out after dark.

 

Round 3 - Application Day 11, June 12, 2015

Round 3 - Silver Linings - Application Day 10

Today just hurts.  I just took my first Tramadol a few minutes ago, Ibuprofen is doing little to stop my face from stinging.  I stayed indoors all day, I organized my tupperware cupboard, and finally got a chance to do that gingerbread house that's been sitting in the kitchen since December with my youngest.  Talk about silver linings!  He is so happy to get time with me.  Normally I'm working and running at 110% trying to catch up with everything.  I am actually enjoying getting to cook for me and my Littleman breakfast, lunch and dinner.  We sit together and talk.  We actually had a great day hanging out together.  He's six, and he tries his hardest to help me out.  I try not to let him see me hurting, and not to ask him to do more than his normal chores.  He's a kid, he shouldn't have to help take care of me.  He keeps my spirits up though. He also reminds me of why I'm willing to do this every year for the rest of my life if needed.
My face, especially my lips hurt, not unbearably, annoyingly yes, very. Keeping myself busy helps to keep my mind off of the pain, and hopefully the Tramadol will help too.  The cracks around the sides of my nose are hurting pretty intensely.  I tried not to get the medication near them, but it obviously got in there.  I also notice that the places that turn red in reaction to the medication are different each round.  Went back and looked at my Day 10 photograph from my first treatment, and it was way worse than how I look today.  I guess the new areas that are reacting are why I have to do this every year.  My case is one of the worst my doctor has ever seen at my age, so hopefully if you are going through this treatment your reactions will not be as severe as mine.  I know for some of you, your reactions have been worse.  It's different for everyone, skin type, damage, etc.  I'm an elementary teacher, I have no medical background, these are just my own thoughts and observations, and those of others who share on this blog because they are going through the same treatment.  Maybe someday, one of you will post some new treatment, and we won't have to go through Fluorouracil treatments anymore.
For me. the first time felt the worst because it was hard to imagine my life going back to normal after the treatments, it felt like a life change.  Now, I know it sucks for a month, but that it all goes back to normal after that.  By suck, I mean royally, really super big time suck. Doesn't suck as bad as having to get half of your nose cut off when they have to remove a "spot."  Compared to that, Fluorouracil is in itself a silver lining of sorts.  Ok I know, that's a huge stretch, but I'm trying to stay positive.  I'm your Freddy Krueger faced cheerleader!!  They need to hang my photos next to tanning beds instead of those hot, young, tanned and oiled up models.  If for one second I had really thought this was in my future, I would not have fried myself so carelessly my whole young life.

Round 3 - Application Day 10 - June 11, 2015

Round 2 - Application Day 10 - July 17, 2014

Round 1 - Application Day 10 - August 5, 2011

Round 3 - Tear Stained Cheeks - Application Day 9

Today was rough.  My face is having a very intense stinging sensation, which kept me up much of the night.  I think that made me over sensitive, and I was let down by someone close to me which put me into tears.  My tears literally stung my cheeks like acid.  I hate to post this photo from today, but for information's sake, I'm going to post it.  I don't think I would have been as upset about the issue had I had sleep last night, and my face was not constantly stinging.  Everything tends to wear on my nerves more than usual which I think is understandable.  I did call into my doctor for pain meds, which I will pick up in the AM.  My youngest son unexpectedly came back home today, and I don't have anyone to pick them up for me.  I'll take ibuprofen to get myself through the night. The name of the medication did not sound familiar so I'll update you on that tomorrow.
I have a puppy that has to go out a few times a night, so I hope it's not anything that is going to knock me out.  I really hope that dog starts sleeping through the night.  It's also important that I make sure my dogs don't lick my face.  Reminder that if you have animals or kids around, keep your medication in a safe spot.  I read about someone's dog who got a hold of their's.  If your dog eats your medication, they are not going to live, and it's a horrible way to go.  I carefully put mine up after each use.
I decided to take my youngest swimming when the sun went down because I feel bad that he's being stuck indoors with me so much.  We went to a friend's house.  I did not swim because I was afraid the salt water pool would have the same effect on my face as the tears did, and oh heck no, I'll pass on that, thank you.  It wasn't too bad to sit on the patio to watch him swim though.  It gets a lot warmer here in July, even at night, so I don't know that I could sit outdoors at all in July.  If I sweat, remember, that stings too.  Tonight was nice, and my son had a good time.

 Round 3 - Application Day 9 - June 10, 2015

Round 3 - Happy Birthday to Me!! Application Day 8

Day 8 Application Phase -  Today is my 45th Birthday.  Birthdays aren't a big thing to me like when I was younger, so I knew I'd look bad by today, but I really don't mind.  It's more important to me to be healed up for my kid's birthdays.  My oldest turns 17 on the 4th of July, and I want to be there and look half way normal.  My youngest turns 7 on  July 19th.  Last year we had a lame family party at home since I looked bad.  I tried hard to make it special, it was all Star Wars and everything. He wants a "real" party this year though, and a real party he shall have.  My ex boyfriend (love of my life from last year.... ya I know....), told me he felt like he lost a month of fun time last summer, that my treatment ruined my time with my kids, especially my youngest's birthday, and half of his summer. That was a crushing thing to hear. I suspect this is a big part of why we are no longer together.   I know everyone likes to think we can be supportive of someone going through this, especially if we "love" them, but some people are very outgoing, and being couped up with us may not be "fun".  I feel blessed that I am no longer with him.  We are still friends, he can send me a text to see how I'm doing then go about his life and not have to stay indoors with me for a month every year.

Today, I look pretty rough but I took the boys out for breakfast anyway.  It's noticeable that there is something up with my face now, and people are doing that kind of looking, but look away thing.  I can see their wheels turning.  If it's someone I'm going to be dealing with I just say sorry my face looks like this and tell them, it's easier to just cut to the chase than to have them looking and trying to figure out what the deal is.  It's easier just to answer that so that they can focus on whatever it is we are dealing with.

I learned something new today.  It was cloudy, stormy and rainy and when I went outdoors it felt nice! I've never done my treatment in June before, so I can now see a benefit to doing it in the cooler months.  The only problem for me would be the summer is when I get 2 1/2 months off, so summer it shall probably always be.  Overall my birthday way good.  I got to spend it with my boys, I don't know what could be better than that.

I'M GRATEFUL FOR THIS TREATMENT!  I'M HAPPY I HAVE THIS OPTION! No, I'm not high on pain killers, and I'm not drunk.  This fluorouracil treatment will hopefully lesson the chances of the precancerous areas on my face turning into spots that have to be cut off, or turning into melanoma.  My face in in bad shape.  I hate to think about my future without this treatment.  If I live to 90, and I'm looking at this treatment at least once per year, I'm looking at another 45 treatments, 45 months of this.  I can do it.  It gets easier each time, not because my reaction is less severe, but because I know what to expect, and I know from experience how to prepare for it, what helps, and that this will heal and I and my life will be back to normal in a few weeks.  Without it, would I have 45 years? No one knows of course, but I love my three boys more than I ever imagined I could love anything.  I want to be here for them as long as possible, see them get through college, married, grandkids etc.  If this will help to accomplish this task, then I am grateful and happy to have this option.  I'm grateful that I can afford it, and that I have it in my schedule to do it. I'm alone, single mom with three kids this round.  If I can do this, you can do this.  I'm a total wuss.

Of course I'd be very happy if the medical community came up with a "cure", or a treatment that is less severe.  I saw this glimmer of hope this morning, guess what I wished for when I blew out my candle this afternoon with my boys.....

Israel Making Progress On a Cure for Melanoma

Here are my 45th Birthday photos.....

My 45th Birthday, Round 3, Application Day 8 - June 9, 2015

Round 3 - Roll Tide (I can't believe I just wrote that...let me explain...) Fluorouracil 5% Cream Application Days 5 -7

Day 7 Application Phase - I'm almost half way through the application phase.  I'm starting to turn red in spots (thus, the roll tide comment), and my lips continue to swell and turn deep crimson (that's wrong on so many levels I know.)  My skin feels like bee stings or pins and needles, but not too bad, just noticeable, unless I go outdoors of course, it's June in Florida here so it's very hot, and that obviously hurts.  I avoid direct sunlight at all costs now, and wear a wide brimmed hat outdoors nearly all the time. During treatment or not, I wear my hats, it especially helps now though.  The cool thing about my hats is that people think I wear them to be fashionable.  They are kind of my thing now, the crazy hat lady I guess.  I've learned to keep a collection in the back of my car, then wherever I go, I've got just the right hat.  Maybe I should start leaving them on more in my photos.
I had my teeth cleaned today, which wasn't bad at all, the only bad part was driving to and from.  The boys are staying with me through my birthday it turns out which keeps me busy, because they like to eat all the time, and they make huge messes and fight non stop.  All of this keeps my mind off of my face. I bought four boxes of Star Wars Popsicles.  They are HEAVEN, and it's great to offer the boys some too, like we are doing some kind of mother son bonding thing.  I feel bad that I can't take them to the beach or pool or water slides, and that they are stuck home with me, but I have them take the dogs out and play etc. We'll make up for this in July.  I also realized I am very blessed to be a teacher in that I get summers off.  I have to do this treatment every year the rest of my life, and luckily I will still have five or six weeks of vacation time when I'm through with my treatment.

Application Day 7 - June 8 2015

Day 6 Application Phase -  My 45th birthday is Tuesday and I didn't know if I'd have my boys with me, so we celebrated my birthday today.  We went to the movies to see Tomorrowland.  The movies are a great escape during treatment, once you get into the dark theater anyway.  The dark helps me blend in with the crowd, the AC feels nice, and there is nothing like a good movie or book to take my mind off of my stinging face. The only bad thing about the movies, although not bad enough to make me not eat is is popcorn.  Be warned!  If you are treating your lips, as I am, getting salt on them, is the equivalent of pouring salt into an open wound.  Make sure you actually place  each piece of popcorn into your mouth, keep your lips out of it, trust me on this.   I'm going through more EOS lip balm and Carmex than many small countries.  Stash your favorite lip balm everywhere.  Buy tons of it and hide it everywhere like a crazy person.  In your desk, on your night stand, in your night stand, kitchen, car, every purse you might use in the next month, hoodie pockets.  If your house is burning down, save your children, your pets, and some lip balm.

Application Day 6 - June 7, 2015

Day 5 Application Phase -  Today I went to my ex's birthday party with a bunch of the extended family and my boys.  Everyone knew I had started my treatment, my lips are swollen and my face stings, and I got a lot of "you don't look that bad"s.  I know people mean well when they say this, and actually I don't look bad yet.  My lips are swelling up though and they hurt, my face stings, I can't go outside in the sunlight or heat, and I've been sick at my stomach.  I was glad I went to the party, it was a casual cookout.  I can't do my normal thing, and I know I tend to eat and put on weight while I'm going through this treatment so I will have to be careful, but I did eat a bit.  

I will not wear makeup except eyeliner and mascara anymore now that my face is getting stingy.  I know for me, it irritates my skin and increases the redness.  This is my 3rd round, so I know what is coming.  Somebody did the nicest thing for me today.  My yard needed to be mowed, edged etc.  I can't do it because of the sunlight, heat from outdoors, and also sweat hurts (salt in wound thing.) Anyway, my friend sweated for hours mowing my yard, edging my yard, fixing my fence etc.  I didn't ask, I'm horrible at asking.  If they would have asked, I would have probably said, "oh no, I'm fine", but they didn't ask, they just did.  If you are trying to be supportive of a loved one going through this treatment you might want to keep that in mind.  Some of us simply don't know how to ask for or accept help from others.  

Application Day 5 - June 6, 2015

Round 3 - Fluorouacil Cream USP 5% Application Days 1 -4

Day 4 Application Phase - Sick at my stomach big time.  I'm treating all of my lips this time.  they are really starting to puff up and turn red.  I'm afraid its causing me to ingest a bit of the medication or absorb more or something.  Skin doesn't hurt unless I sweat or go outside in the heat and then it stings a bit.  Hardly noticeable to look at, except I'm a little pink and my bottom lip has a dark red line around it now.  The bandana I wear is to keep my hair out of my face.  The medication is greasy and even when I wear a pony tail, my hair falls out of place and sticks to my face and I hate that feeling.

Application Day 4 - June 5, 2015

Day 3 Application Phase - This is me running errands and its hot outside.  I had a quick meeting to go to, everyone tried to offer me water when I walked in, they said I looked flushed.  Being outdoors stings.  EOS mint lip balm is my favorite go to at the moment.  I bought a bunch of them, I tried the new vanilla mint flavor, but it doesn't feel as good as the mint to me.  Loaded up on Carmex too.  I'm alone this time, with a puppy and my boys are here off and on, so I have tried to stockpile a month's worth of supplies so that I won't have to go out.  

Application Day 3- June 4, 2015

Day 2 Application Phase -  This is me waking up in a hotel in Gulf Shores, AL the morning after the Dave Mathews outdoor concert.  It was evening and muggy but not too bad.  I didn't apply my PM dose until after the concert.

Application Day 2 - June 3, 2015

Day 1 Application Phase -  I wore Nuetrogena 30 SPF  over my mediation, it didn't look too bad. This was my last teacher work day.  I figured that  the earlier I start, the earlier I finish.  I'm already a few months behind when my Dr. wanted me to start my treatment, but I didn't want to frighten the Kindergartners.

Application Day 1 -  June 2, 2015