Healing Day 11- Light at the End of the Tunnel

This AM the when I got out of bed and looked at myself in the mirror the first thing I realized was that I didn't look like me.  If you've been reading my journey you might remember that the doctor put me on steroids to help feal my face because my reaction to the flourouracil had been so severe.  It has been healing up noticibly every day.  I still have large cracks in my cheeks, but they are healing.  Today I was swollen!  My eyes look small.  The entire shape of my face is pufffed up to the point, I don't look like me.  I'm sure it's the steroids.  I'm about halfway through my treatment with them, so maybe by next weekend, I will be starting to resemble myself again. 

It was difficult to attend a friend's birthday party last night after work.  I took my husband and my youngest with me which helped.  I still can't wear makeup, and everyone else looked so pretty, I looked like I had taken a break from scrubbing toilets or something.  My friend was very considerate and asked if it was OK for me to be in a photo.  I said no at first, but I didn't want her to not have that memory so changed my mind and said yes.  It's more about the fact that I was there, than how I looked.  I did have a nice time, and for the first time since I started this journey, I slept the night through.  That feels like such a huge step in getting better. 

Today I am photographing a beach wedding at one of the local hotels.  I'm a little concerned about avoiding the sunlight today.  I bought myself a big sun hat, and will wear a long skirt.  It should be allright.  Much of the pre wedding stuff will be indoors. 

I've heard from others about people they know who did this treatment, and they stayed indoors in the dark for long periods of time.  I'm glad that I did not do that. I know I have looked horrible.  Everyone was very understanding, and supportive though.  Some people want to say something to you, but they are worried they will offend you so they don't say anything.  Some people adjust and can talk to you about it when they feel more comfortable. I have to give people more credit.  Not one person was rude, no little child ran away in fright.  I got a few curious looks here and there, but most people could see I was obviously undergoing some kind of treatment.  EVERYONE has their things.  It's part of the human experience. 

My journey was not pretty, and it was painful.  I'm off all the pain medications and Tyelenol and all that now by the way.   This experience really helped me to see my life in a differnt light, and  changed my perspective on many things in life. I'll do it again.  I dont' fear it.  I can do it.  You can do it.  It beats the heck out of the alternative.  Now go hug somebody you love, call your mom, go watch the sunset or the wind blow through the trees, or go people watch at WalMart, just wear your SPF. 

Healing Day 8, Peeling Cracking and Lots of Pain

Aren't I a pretty sight?  The increased dose of pain medication does little to control the pain at times.  I don't know why, but the pain seems to be worse at night.  I'm peeling a bit, and if you look at this photo you can see where my cheek has split.   My flesh is too tender to use even a washcloth on, it just comes off. 

My friends are wonderful.  I'm in a Mardi Gras group with a bunch of my girlfriends.  I went to a function last night at one of their homes.  When I'm with my friends, it seems they quickly adjust and I'm just me, it's like they don't see the mess of my face.  That makes me feel better.  I don't mind at all when people ask me about it, but it's also nice to forget about it sometimes too.  Laughing hurts sometimes, but it makes me feel better inside. 

Work has really worn me out more than usual today.  I'm worrying about orientation tomorrow morning when I will meet many of my new students and their families.  I hate to have people meet me like this.  I'm excited about the new school year though, and I just keep trying to keep my focus on the positive future, I try really hard not to think about my future treatments.  At least according to the Dr., I don't think they will put me through them until I am in this bad of shape again.  I'm on day 3 of the steroids.  I'm suppose to gain weight on them, but I will fight this battle first, then worry about getting my weight back off. 

Anyway, hoping I'm not scarred for life after this.  I have another wedding to photograph Saturday at the beach this time.  I was suppose to be pretty much healed by this point, but I still have two more days and maybe the steroids will kick in and do some kind of miracle.  The sunlight and heat still hurt really bad.  I'll have to wear a good hat Saturday.  I heard something today about a cure or new treatment for skin cancer.  Wouldn't that be great!!

Healing Day 6 -Is it ok for me to postpone my pity party until a week from now?

I slept good last night thanks to the pain medication, and got off bright eyed and bushy tailed to my first day back at school.  It was really nice to be back, new classroom, everyone seemed happy, and great to see my friends who I hadn't seen all summer.  I didn't go out for lunch to avoid going outdoors, but I had plenty of work to do.  My principal kind of told everyone I was having treatments, and would get better soon.  Some of my friends who didn't know asked about it.  It went well.  It was a very productive day, and that helps keep my mind off of it.  Every once in awhile I would catch a glimpse of myself in the mirror and see how bad I looked, I felt sorry for my co workers having to look at me like this.  They are saints though, and they do make me feel welcome.  At one point today, one of my friends had me laughing, I have to try really hard not to, because it hurts when my face cracks.  Guess I laughed a little too hard, because she had to politely tell me my face was bleeding, it was literally running down my face, and I did not feel it, do to all the scabbing and pain.  I really appreciate the way my friends handled it.   I'm very blessed.

Unfortunately my doctor's appointment didn't go so well.  The staff was giving me looks and comments about my face.  It wasn't until the doctor came in and we were speaking for a few minutes that I realized they were all in shock, my face was not having the "normal" reaction to the chemotherapy.  The doctor explained that I was like that 1 in 1000 patients who had a really bad reaction.  When I called needing the pain medication, they had assumed I was exaggerating.  Today he increased my pain medication.  He was very serious, which was a little scary.  He said that the damage from the sun was worse than what he would have seen in an 85 year old blond and blue eyed farmer who had spent his life in the sun. :-( 

I'm only 41.  I have to be around a lot longer than an 85 year old would need to be.  I have three kids. How could I have been so stupid to have done this to myself?!  The doctor said he didn't know how I would be able to do this to myself again.  If you've been reading you know I had the same thought.  Even through the worst of this I have told myself I will do it again, no matter how painful, because it's for my kids.  He did say that maybe in the future I would apply the medication for a week instead of two, or follow it up with a different kind of medication. I really don't care, I'll do it to stay alive.    He also mentioned very seriously that he had no idea it was so bad.  He was very grateful that we caught it and treated it now.  He said it would have been a completely different story in two or three years.  Two or Three.  I want to cry, I am scared and upset, but it hurts my face too much to cry.  Maybe in a week or two I can allow myself a few moments to let it out.  He gave me a stronger prescription for Loritab and is putting me on Pregnizone and some other steroid to help heal me up.  Hopefully I am not scarred up for life.  At this point though, I would handle that, and do it all over again.  It's not about how I look anymore. 

Please get yourselves checked.  Please wear sunblock, avoid tanning beds, and take care of your skin. 

Healing Day 5 - Clinique Superdefense SPF 25 - get you some!!

The pain medication has really made me feel human again.  I have slept, and feel so much better.  My face is still red, and peely and it hurts.  It's not too itchy, but I do have to resist the urge to peel it. I noticed by the face print of skin on my pillow that my face is still sticking, the good news is that because of the medication I didn't feel it and slept through it. Yeah.

During this healing process my face is more dry and cracked than durning the medication phase.  Today I went out school shopping and it was Clinque Bonus time, so I asked the Clinque lady about a super moisterizing creme that would help, but not be perfumed or have harsh chemicals.  I usually avoid products with oil, but I told her that is not an issue at the moment.  The product she sold me is like a gift from heaven.  Most of the other products I tried were heavily perfumed, and would sting when I would apply them.  Also as I have mentioned many times, I can't stand the greasy Vaseline type ointments, and hydrocortizone while it helps is not meant to go on constantly. 

Clinique Superdefense SPF 25 age defense moisturizer feels so nice.  It really made my scabby, peely skin feel much softer and moisterized with no added pain.  It's not oily either.  It is what I have been looking for all along.  It's allergy tested and 100% fragrance free.  Even the Aveeno Ultra Calming moisturizer was heavily perfumed and stung my face.  This 1.7 oz jar of Clinique cream was a little over $40.  I believe it is worth every penny.  I will definatley have a jar on hand for my next round of topical chemotherapy. 

I went out shopping today, because I go back to school tomorrow.  I got a few looks, but they don't bother me too much. One person told me yesterday that she thought I was having Retin A treatments or something. I did buy myself a big straw hat to wear outdoors, especially at recess.  I still have a week before the students return.  My biggest obsticle at the moment is staying ahead of the pain, when it hits, it hits hard, and avoiding the sunlight.  Just a second or two of direct sunlight on my face hurts, so I have to be quick at getting in and out of buildings etc.   

Healing Day 4 - Sleep

My painkillers did the trick and I was finally able to get some sleep.  Today they made me a bit sleepy so I even took a nap.  When I woke up and turned my head, my face was stuck to the pillow.  Gross I know. My face is still very red and hurts.  It's peeling quite a bit.  I have to resist the urge to help the peeling along. I can take two pills, but today I only took one so that I could function.  Two of them knock me out, so I will take two before bedtime.  It's important to stay ahead of the pain, because when it comes it comes quickly and is very intense.  I do still look terrible, but can see the healing is progressing.  I can see the light at the end of the tunnel. 

Healing Day 3 - I'm Not a Crack Head, Cracked Face Maybe

I was up all night again last night, I just couldn't sleep from the pain. I had taken maximum doses of Tylenol and Ibuprofen again, but they didn't do much. The Count of Monte Cristo has been my friend through this, reading helps take my mind off the pain, and it's such a good book.  I put out a 3 or 4 AM request for a friend to make a Waffle House run with since I was up.  No one else was.

Several of my friends and family had been on me to call my doctor to get something for the pain.  This morning the pain was worse than ever.  Honestly after three kids, the worst pain I have ever felt.  I was tired, and things were waring on my nerves which seemed to make my face hurt worse as well.  I finally decided to give in and call my doctor to get medication for the pain and to sleep since I think it's been over 5 days without sleep.  I left a message with the nurse, but the pain was intensifying rapidly.  Soon I was in tears, which made it even worse and I was crying out.  I guess I was in pain meltdown mode.  My husband who was flustered called the doctor and got his nurse.  Her responses were things like "it's supposed to make sores" "we don't call in pain or sleeping medication", "you have precancer, you don't have cancer" and "it is supposed to look all red."  This was frustrating, and for me, pushed to wits end infuriating.  I didn't ask for her diagnosis, I don't give a rip how I look, or  did I even convey that I did, I just needed some pain medication and I needed it immediately.  I did not want to go to immediate care to get it, I did not want to go out in the heat and daylight for a trip to get it, I was in excruciating pain, and wanted something for it now. 

I blame the crack heads for this.  As I mentioned in an earlier post, Pensacola is like the worst city in the country for Dr.'s writing prescriptions for drug addicts who go Dr. shopping to load up on Oxycontin and the like.  We've had a few bad doctors who knowingly did this, but most are innocent and some of them have been duped by the addicts.  I think Dr.'s are scared.  If they are suspected the police show up, take their computers and files, and they end up in the local press.  Can't blame them for wanting to avoid that.  The problem comes that when you get a patient like myself, who avoids taking even Tylenol and is really in agony by the time they break down and request something, they get treated like a junkie trying to make a score.  My husband wants me to get a new doctor.  He did not meet mine.  I really felt my doctor was great, very down to earth, knowledgeable and kind.  The moment that the nurse or whoever she was spoke with him, he ok'd the prescription for something for the pain, Hydrocodone, but they couldn't call in anything to help me sleep, I suspect because they think I am a junkie.  I'm so tired right now, and actually I feel my meds kicking in right now a bit, that I may be not thinking clearly.  Remember these are just my thoughts and observations.

One of the nurses comments still had me really ticked off. She said they don't give pain medication to patients going through treatment with flourouracil.  Nearly every other blog I found on treatment with flourouracil indicated that the patients at some point were prescribed pain medication and sleeping medication.  My story is not much different than the others I found.  Everyone has a lot of pain which causes a lack of sleep.  If it is possible to give patients something for this, why would a doctor choose to let a patient suffer.  Knowing what this treatment causes, logically it seems a doctor should also prescribe pain medication, or let the patient know they might need it and to call if they do.  I really believe the nurse needs round of topical chemotherapy treatment before she tries to tell another patient that it normally doesn't hurt that bad.  Remember my doctor telling me it would get the point that I would hate him?  I don't, but the nurse lady really has me ticked off.  In the future this seems like an issue that needs to be handled differently.  I will talk to him about it when I see him Monday.   I'm also one of those people who hates to complain, and I tend to let others walk allover me, but I will say something.  

I think eating the Indian food last night really added to my pain, I swear the spices are coming through my pores.  The stress of not sleeping makes me very irritable, and when anyone starts to irritate me, my face just starts throbbing.  It just seems one thing feeds off another. 

I've been applying extra moisturizing hydrocortizone cream which seems to be helping.  I have to apply it about 5 or six times per day.  Sometimes I use Aveeno ultra calming night cream, but it is highly scented which turns me away. Just something nice and creamy and unscented would be nice.  Any ideas?  I was wondering about Desitin or diaper rash cream.  One way to describe how my face feels is chapped.  Many people have written about how Vaseline saved them through his treatment.  I personally just can' t handle the greasy stuff on my face. 

It's one in the afternoon and I feel the medication starting to kick in a bit.  Maybe once the pain fades away I will be able to sleep.  It said to take one or two, normally I'm always a take one kind of person, but today I went straight to two.  Saying a prayer this helps. 

Healing Day 2 - No Matter What....Stay Away From Spicy Food!!!

Pain.  It hurts! My husband took me out for Indian food tonight which was delicious, but oh my, I'm in about the worst pain of my life.  It started about mid meal. I didn't get it on my face, it's like the spice is coming out of my pours or something.  It was not hot spicy, I ordered mild, but 2 ibuprofen are like nothing.   I even tried to wash my face off with cool water in the ladies room.  It's stinging and  burning really bad. Think I had a few seconds in there where I was hating my Doctor.  Luckily the kids were not with me in the car, because I'm sure I was using a few expletives when the pain was at it's most intense.

I'm still not getting much sleep if any.
It is still unbearable to go out into the heat, especially the direct sunlight, even for a minute or two.  I'm pretty much either taking ibuprofen or Tylenol to ease the pain.  They don't take it away.  Ice cream is still my escape.  As soon as I am healed I look forward to getting some kind of exercise, and getting some pain free time outside.  My husband and a friend who saw me last week both think my face is starting to look better.  I don't see it.  I'll post the photos from today and you can be the judge. 

Sometimes I get busy and forget my face hurts.  When someone asks me if it's painful, it hurts.  Maybe tomorrow will be better.  I hope I can sleep tonight.  It actually hurts too much for me to feel sleepy if that makes any sense.  Remember two weeks ago when I was worried about how I was going to look!?  Funny how things change. 

Not the Vaseline!!!

Healing Day 1 -

I read another blog of a patient going through topical chemotherapy treatment with Flourouracil yesterday.  She like the others I read applied Vaseline to her face and praised it's benefits.  I tried Aquiphor which in my opinion is about the same thing, and could not stand that greasy feeling on my face.  I am getting my cracking and peeling though, so I may be rethinking this decision soon.

I did not sleep again last night, which leaves me tired and worn out this morning.  I did notice from other blogs I read that patients were either provided with or called in for pain meds and sleeping medication.  I'm almost there now, so I'll probably just suffer through at this point.  Next time, I will arrange for those medications ahead of time with my doctor.

I just barely began to break a sweat unpacking boxes in my classroom yesterday.  Maybe I can best describe it as salt in an open wound, the wound being my entire face.  I was in an increased state of pain all day after that.  Avoid sweating, trust me on this one.  I should have taken ibuprofen before trying to go to bed last night.  I broke down and took some around 5AM and guess what, yep I finally caught a few Zs.

I read that chocolate helped another patient get through her experience.  I think it's important that you have some kind of little reward for yourself that will perk you up now and then. 

I'm not sad at all. I don't feel sorry for myself and I don't want anyone to feel sorry for me, which I've noticed some of my friends do, to the point of tears in fact.  The people who see me in person will see me laughing and joking as usual, admittedly I say "ow ow ow" if I laugh too hard and crack my face for something. Even then it beats the heck out of hiding at home and feeling miserable.  When I'm busy I don't have as much time to think about how bad it hurts. People say things like "I don't know how you do it."  Well I put the stuff on twice a day.  I do what anyone else in my position would do.  I'm not brave or anything, I'm just doing what I have to, the same as you would.  We all have our trials, mine could be much worse. 

Day 14 - That Healthy Glow

I'm going in to work in my classroom in a few minutes.  I'm dreading stepping outside the front door, not because I do in fact resemble Freddy Kruegger, but because I know it will be painful. I've been wearing my glasses instead of my contacts just because anything near my face feels more sensitive than normal.  I pulled out an old sun hat I bought in Puerto Rico, I looked like the poster child for dork.  They always hang posters and photos of these sexy brown models around tanning beds.  I think they should hang photos of people who look like me, discolored faces, peeling, cracking bleeding, in hats and clothes covering as much as possible. 

I  believe I understand the minds of the people visiting the tanning beds and soaking up rays, they hear this stuff, but they don't want to hear it, subconsciously they ignore it, and tell themselves it won't happen to them or "they'll have a cure for cancer by the time I get old."  How many songs do you hear about relaxing on the beach with a cold drink, and your SPF on? I just wish that they could see my face now in their minds eye.  I was invincible, I rafted a raging river by the light of the moon, I was a fire fighter, sailor, world traveler, I rode my motorcycle across the country alone, but I'm not invincible anymore.

My son is ready to leave now, I really don't want to step out  into the daylight because I know the pain that will come with it.  I pray some of you learn from my mistakes.  This is my last day of medicine.  I will continue to document my healing, and maybe further treatments over the years.  This is not some marathon I completed and get to feel like I have finished.  I get to do this repeatedly the rest of my life.  I try not to think about a year from now when I must once again apply the topical chemotherapy medication to my skin.  It will be very hard, but it's not for me that I do it.  I think of my kids, my mom, my husband, and I slather that stuff on, no matter how much it hurts.  It's not really about me anymore.  Thanks for allowing me to share my journey with you.



 

Day 13 - Do Not Yawn!!!!

Tomorrow is day 14 of applying the Flourouracil, which is my last day.  I'm almost there!  I still have the healing phase to go through though and I hear the first couple weeks can be worse than this time that I have been applying the medication two times per day. 

Some interesting things are happening with my face. The color has changed from that inflamed blistering red to a brownish red that is drying out and scabbing up.  I've been really good at not picking at it or scratching at it so far.  It's not too itchy yet, so that hasn't really been an issue.  It does feel like my face is cracking if I smile, or even worse...yawn.  Whatever you do, DO NOT YAWN!   I have a couple little dried up blood spots on my face that must have come from smiling,  laughing, yawning, or sticking to my pillowcase at night or things like that.  I've put hydrocortizone on a few times.  Not because my Dr. said to, but  because I read on someone elses blog that it helped.  It stings really bad at first, sometimes I catch myself saying ouch among other things as I put it on, but after a few minutes it does seem to help.  I bought the extra moisturizing kind, I prefer this to anything greasy, like I said, the greasy stuff just feels nasty on my face.  

I feel like I have a touch of the flu or something today.  I'm sick at my stomach and have a headache.  I don't think it's from my treatment though.  Hot food still sounds bad, popsicles are like heaven.  Ouch, I just yawned. 

Day 12 - Crusty, Painful and In Need of Sleep!

Yesterday I went out to lunch with my husband and my youngest son.  I did get quite a few stares, but it did not bother me much.  I got a table near the back of the restaurant and sat facing the back.  It was very hot out, and I had been in and out of the car, this seemed to irritate my face, as it was hurting pretty badly, even sitting in the restaurant.  The directl sunlight which hit me for less than a minute was like torture.  My son was running around and wouldn't get in the car, and I was just in agony there for a moment.  At lunch I was relieved that when my gumbo came it was only warm and not hot.  Hot food is not something I desire lately.  My face is dried up and scabbing over.  It hurts to smile, I can feel my face cracking in places.  I'm most comfortable when I can avoid talking or facial expressions.  I've been taking huge doses of ibuprofen, I will call my doctor in the AM since today is Sunday.

I think when people see me, they are trying to figure out what is wrong with me.  It's obvious the red is just on my face, not my neck, chest arms or anything.  It's worse than a sunburn.  I think I look like some kind of fire or explosion went off in my face. I can see them trying to figure it out. 

Last night I felt really bad.  A friend of mine was having a casual girls night at home for her birthday with a few of my other girl friends.  I actually had my husband take me, and brought my youngest along to play with hers.  I didn't really feel up to going, but wanted to show up to let my friend know I care. Of course my face was the topic of discussion for about the first 15 minutes, but then everyone adjusted and moved on.  One of my friends asked me when I decided that I had skin cancer.  I thought that was kind of an odd question.  I didn't decide that I have skin cancer.  I turned 41, noticed over the past few years I was starting to get strange spots and stuff, and knew how many burns I had received in my younger days.  I knew it was time for a check up with my dermatologist who I had been avoiding pretty well for the past 10 years, maybe because I was not ready to deal with what I kind of already suspected. My doctor diagnosed my skin cancer, I honestly can't even remember what kind I have.  I just remember him explaining how it is spread on my face so it can't really be cut off, and that it will come back and we will have to repeat this every year or so for the rest of my life.  I'm not one of those people who wants to know all the details, and sometimes some of that stuff just goes in one ear and out the other with me.  When you hear cancer, and chemo and the doctor is telling you it's going to be so bad you will hate him, and you better plan on staying out of public for a couple of weeks, and that you have young kids still, and a job, and cancer? really?  All  this in about a 3 to 4 minute conversation, it's a bit difficult to take it all in.  Oh ya, and I have more spots that we will be looking at when I'm done with this phase, what was I talking about again?  You get the idea.

I was glad I went over to my friends.  It was nice to laugh and forget about this for awhile.  I'm sure getting out and about helps avoid the depression that could come from hiding as well. Many of our kids were there, and they saw me too.  People ask and I'm pretty much an open book.  If I stay home and hide, who am I helping?  I see that by going out and talking openly to to others who ask, I'm influencing others to get checked, I'm influencing young people to wear their sunblock, and think twice.  Everyone says it looks painful, I admit it is. Who would want to go through this is they could avoid it?  If this is helping others for me to go out like this, and I get to do this every year or so the rest of my life, that is more people I can help.  In the long run, maybe the trickle down effect is that someone avoids getting skin cancer, and a child doesn't lose a parent, or a parent doesn't lose a child before they themselves pass on.  Then maybe I did some good, and maybe left things a little better than I found them.  I am not ashamed of my face at all anymore. 

It also seems to some people who ask about things, that they make the same jump I did at first that Oh, this is just some kind of chemical peel thing.  No it is not.  Flourouracil is chemotherapy medication.  The same medication they inject, scientifically developed to kill cancer cells, only it's in a cream base, made to apply directly to areas of cancer on the skin.  It's a more effective means of delivering the same medication to  exactly where it needs to go.  I don't have nausea, and my hair is not falling out because the medication is not being injected inside of my body.  This is not Retin A, or a cosmetic facial peel. 

New issue of the past two days.  My husband is home.  He snores!  Normally I manage to sleep through it, but I am sleeping so lightly from the pain in my face, every time he stirs or snores I'm awake.  The past two nights I've been up to nearly 5:30 AM.  That sleep I get in the early AM is just not enough.  It's definitely causing a bit of stress between us.  Normally he travels during the week.  Of course this week when I probably need the bed to myself he is scheduled to be home.  We will get through this.  I still do not hate my doctor. 

A couple of more things...I have a couple of comments on my site that I have tried to respond to.  The system is not posting my responses.  This is my first blog so I'm still learning how to do all this, so bare with me. Al, I love what you are doing and yes you can use my photographs, all I ask is that you  please give me photo credit and let me know where exactly you are using them. I read a story about a wife and mother who recently died from Melanoma last night at 3AM on Al's Blog. Al, I'd like to provide a link to your blog from mine if that is OK with you.  Your page is what I turn to late at night when I can't sleep. To everyone.... this is scary stuff.  Please wear your SPF and take care of your skin, if not for yourself, for those who love you.  Get screened.  There is so much they can do if they catch it early.  Melanoma is a killer though, so don't wait until it's too late.  There are people who will be in your lives 10, 20, 30 years from now who you will love very much.  The decisions you make today, could impact those people many years from now.  You are not invincible.  Humans are living to be much older than in the past. Do you want to be 100 years old with your ears cut off and gouges and scars all over you?  Think about these things!!

Day 11 Road Rash

Last night was terrible.  I've become pretty good at pushing the pillow back out of my face, while I sleep with my face in the air, but the edges touch my face a bit, especially on the down side.  Last night was the worst night for pain and a new issue.....sticking to the pillow case.  I'm starting to scab over, I'm very peely, cracked and  I even ooze on occasion.  I didn't fall asleep until after 4 AM because I couldn't stand the prickly pain the pillow would cause, or the even worse sensation, the sticking to it from an oozing part of my face.  Those really soft pillow cases I bought have a few blood spots on them this AM, and at this point I don't think soft even matters.  I also had to take 4 ibuprofen which is too many.  My husband is insisting I call the Dr. for pain medication, but I'll try to hold out a bit longer. 

Once when roller blading I was nearly hit by a car.  I avoided the car and went down on the pavement, in shorts, of course. Road Rash. The wound on my leg was nasty, the first few nights before it had scabbed over completley it would stick to the sheets.  This is what my face is reminding me of now.  I know it looks bad, but it seems funny I don't really care about that so much.  It's very uncomfortable.  My face feels like I was drug on the asphalt for a block.  Will I do this again?  Of course, it's still tolerable, just annoying.  Forgive me if I'm a little short tempered lately, everything seems to be wearing on my nerves more than usual, but I think it's pretty understandable given the state of my face. 

My little blog here has had over 200 views from around the world already.  Wow and Thanks! I don't know how to say hi in Arabic, so "hi".   I hope all this helps some of you.  It's not fun, but it's really not that bad.  Trust me if I can do this, you can do it too.  I'm a total wuss!

Day 10 Oh Ya, I Forgot

Last night a few of my customers thought I had a sunburn at first, some made comments about me getting burned.  I just politely and honestly explained why I looked like this.  Sometimes I forget I look they way I do, then I see myself in the mirror and have kind of a wow, oh ya moment.

My Father in Law is healing from his surgery, they don't know the results of it yet, so we are all praying for him. 

I seem to be cracking and crusting a bit.  Some spots on my face are really white, or turning brownish, I don't know what that means.  I'm more inflamed than ever, but the pain is slacking off a bit at times.  The ibuprofen helps a lot.  I put Aquifer on my face yesterday, which is like Vaseline.  I never put anything greasy on my face and don't know that I can handle doing that again.  Carmex is like the best thing in the universe.   I get a few looks from people now and then, but it really doesn't bother me.  I opened the shop all day, I'm out and about just about as much as normal, if it bothers others, they're doing a good job of concealing it. I think I must be close to the bad part, and after 3 kids and other things in life, I can say this is something I can handle.  It's irritating, but no where near unbearable. 

I hear when I'm all healed my skin is going to look great.  I bet there are some of those women who are all into plastic and Botox, who would pay big money for this "peel" lol. I guess I won't need any of those since I'm getting this every few years the rest of my life.  There is good in nearly every situation if you look hard enough.  Sometimes it takes the bad to really appreciate how good a normal day can be.

Day 9 Drying Out and Kicking Myself for Being So Stupid!!!

My Father in Law had to go in for surgery today to remove lymph glands that his skin cancer has spread to. That is what we want to avoid, letting it grow and spread.  It's bad news once it gets into the lymph glands.  My Father in Law is a retired Marine.  The guy is a tough one.  Anyone can get skin cancer though.  I lost my own father to  cancer about 5 years ago, so that is always in the back of my mind.  Our prayers are with my Father in Law, and my boys Grandfather, I hope they get it all out and he heals quickly.
 
My skin is starting to dry out and peel off.  I always wash my face with a washcloth right after I shower.  Today I had to be careful because 1.) it hurts, and 2.) my skin was coming off with the washcloth.  I actually think the top layers of my skin are dead, so the pain has eased just a bit.  I'm taking Ibuprofen today to stay comfortable. 

This is the busiest day of the week at my shop, so I'm going in.  I don't want to disappoint any customers who come over. It should be interesting to see how people react to my face. 

This is not comfortable, but it beats the heck out of dying from skin cancer.  I hope others learn from my mistakes and wear sunblock, hats etc.  I always figured they would have a cure for this before I got old, I guess they do in a way if this can be called a cure.  The artificial tanning products on the market now are fabulous.  Fortunately  many wise and health conscious  people are now using those products rather than taking the risk of getting skin cancer from a sun tan.  My days of laying out by the pool or on the beach are over.  I remember how important it was to me to be the darkest one on the beach. Those tans are long faded and forgotten.  Was my tan worth the possibility of not being here for my son's wedding or college graduation?  Hell no, it was just stupid!  Most of the damage was done long before I even had kids, and now they are my number 1 concern in this.  The pain, the ugly..... no problem, bring it on.  The possibility we miss a spot someday and my kids lose me earlier than they should, that is what bothers me the most.

Day 8 Now I Know How Vampires Feel

I feel halfway comfortable indoors in the AC.  If I had my choice about when to time this procedure, I think next time in the spring or fall, before it's too hot or too cold.  Maybe somewhere where there are few daylight hours. I really needed to get to my classroom to start getting ready for the school year, or down to my business, but I can't stand the thought of the pain of going out there into the heat.  If only someone had invented a little cooler thingy to wear around my head. I still feel really worn down too.  I'm staying in my PJs. 

Today I have not ventured outdoors at all, my face doesn't hurt too bad if I don't make any facial expressions or talk.  Remy noticed I'm beginning to pronounce my "r"s as "w"s.  That is obviously because I'm trying to avoid the pain of moving my lips (try saying right and wite, you'll see what I'm talking about).  My husband is out of town and my family is far away.  I'm home alone with the kids, trying to get the 1/4 gallon of milk we have left to stretch until tomorrow to avoid having to go out into the hell that is daytime in Florida. Everytime I read a post on Facebook that someone is out at the pool or beach,  I feel pain in my face.  I'm not joking it's very weird. The past couple of days, I've gone out at dark which is not bad.  Unfortunately, the rest of the world is pretty much home in bed at that point. 

Ideally I'd have no responsibilities and could just hibernate and read for a month.  The reality is that is not my life.  Today is PJ day, tomorrow I'm going to have to suck it up and get out there and feel the burn. 

Note that even though I look worse than ever, at this point I really don't care, the pain is my main concern.  My doctor said I would hate him before this is over.  I'm not there yet, but I'd say the possibility is definitely there in the very near future.  I'm finally ready for pain killers....look out Ibuprofen, I'm coming for you.  Hardcore I know, and to think I live in the Hydrocodone capital of the world. 

I'm really regretting all the tanning beds, skier face burns, times I got burned on the boat or at the beach.  Last night I actually found myself wishing I could go back 30 years and redo all those bad choices.  The look of tan skin looks disgusting and painful to me  right now.  It must be like negative re enforcement like when they shocked my step dad every time he wanted a cigarette until he couldn't stand the thought of them anymore (as far as I know this practice is now illegal in the US because it caused nerve damage). In over 20 years of knowing him, he still hates cigarettes.  If anything I feel like I want to stay in the cool and dark.  The worst thought of all though, is that if somehow we miss a spot, or I slack off on staying on top of it, this could kill me.  It's not death I fear, it's that my youngest is 3 years old.  Even if I last another 40 years of getting these things cut and burned off me, he will only be in his early 40s.  At 41, I'm still too young to lose my Mom.  Yep, if I could go back, and make different choices, I would.

Day 7 Owwww It Burns!

I have to say thanks to my oldest son Remy for photographing me the past few days.

People are starting to look at me today, but they quickly look away, it's not so bad.  I ran into an old ski buddy of mine this AM at the doctors office.  She almost looked away, but then recognized my eyes under all  of the red.  She knew right away what it was, she's a nurse practitioner, and a few years older than me.  Turns out she's already been through this, and warned me it's going to be miserable.  The good news, she looks great now.  Ski bums, wear your sunblock!

I took my boys out for pizza today.  The heat of the day felt terrible. I love to eat spicy food and couldn't wait to get my favorite spicy Buffalo Chicken Pizza.  It was terrible, my face is in constant burning pain right now, and to feel that same feeling in my mouth at this moment was torture.  On the other hand frozen yogurt tasted great last night.  No more spicy food until I'm past this.  My lips are burning too.  The medicine seems to be running down the very fine little wrinkles above my top lip, into my top lip.  I've tried to avoid this by applying Carmex to my lips before each treatment with Flourourcil.  I  have fried my lips many times in the past, so they might as well get treated too I guess. 

It was very cool inside the theatre where I was doing my photography session last night.  It felt so nice, I was almost sad to leave.  Cool definitely feels better on my skin right now.

Day 6 Significant Redness

Last night it was difficult to sleep due to the pain in my face.  It feels as if I am severely sunburned.  I got a bit of sleep if I didn't move, but any movement of my face stings and wakes me up.  On my sides I crunched up my pillow behind my ears, so that nothing was touching my face.  This was the only way I could get comfortable.  I never sleep on my back, I guess I'm going to have to learn how. 
This AM I applied some hydrocortizone to my face because it felt really uncomfortable and I had read that it helps with the discomfort and dryness from  the Flourouracil.  I honestly can't say that it feels any different.   Carmex is a must, which as I said seems strange because I am not applying the medication to my lips.   I'm holding off as long as I can on Ibprofen because I figure I have a few weeks of this and I don't want to harm my liver.  I noticed on another blog they were taking Tylenol for the pain.  For myself I will take Ibprofen, because I think the antiinflamatory benefits may help a bit too.  I am not a doctor, so please check with your own doctor.  I'm one of those people who are really bad about calling over the little things, and most likely will not have contact with mine until my appointment on August 15. 
One thing to note; I live in the hot and humid south.  When I went home to Washington State for awhile this summer, my skin dried out quite a bit, it seems to not dry out down here in the hot and humid Florida summers though.  Before I began this treatment, I figured that the humidity probably helps, and that doing it in the cold, dry part of the winter might feel worse.  Please remember, I am in no way a medical expert, or medical anything and these are just my personal opinions and thoughts.

Day 5 Blotchy Red Face that Feels Like a Bad Sunburn

I cheated and wore alittle bit of makeup to the wedding yesterday.  I waited a few hours after applying my medication before putting the makeup on. I still looked red, if anything it calmed the blotchy spotty effect a little. It did not seem to be any worse than normal (chemotherapy normal, not to be mistaken with pre chemotherapy normal).  I also promised myself that I was only wearing it because of the wedding and I will not do it again.
I got a few comments from people close to me about my health, and that it should come first.  The doctor knew about the wedding.  This was not the kind a thing a week here or there was going to make any difference on.  He was 100% on board with my decesion.  I am not in danger of dropping dead at any moment or anything.  Also if I tell someone I'm going to do something, I do it.  I've been let down by others who don't take their commitments seriously, and I could not let a bride down right before her wedding if it could be helped.  That would have caused me more stress than just timing it so I could do the wedding, which I am very glad I did.  It all turned out fine, and I felt such a load off my shoulders last night when it was over.
Today I am really red and blotchy.  It hurts and it hurts worse to go out in the sun. I'm avoiding taking anything for the pain yet, it's tolerable at the moment.  I'm taking my middle son, who is 8, to go see Harry Potter in 3D IMAX , I know it will hurt a bit, but he needs his time with me too.  I will probably get looks today, but it's still not that bad and once I get into the movie theater it will be nice and dark which is appealing to me today. 
I don't put the medication near my eyes or on my lips.  I've been using more Carmex and lip balm than normal, and I feel constantly dehydrated and chapped.  My mouth feels very tight today. I'm drinking lots of water, no alcohol by choice.  Just tyring to make the next few weeks as comfortable as possible.   I splurged and purchased some nice new pillowcases, my face is so sensitive right now, I don't want anything to touch it.  I'm a stomach sleeper, so I'm curious to see if that is going to be a problem soon.  Also my 3 year old is used to hugging me and nuzzling into my face and neck.  I don't want him getting the Flourouracil on him, and it's getting a bit painful.  I'm trying to make snuggle time where he rests his head on my chest or something and I rub his back.  No cheek kissing either, now we have to do quick pecks on the lips only.  It's only for a few weeks.  I can do this.  It's really not that bad so far.

Day 4 Wedding Day Oh My!

Today I'm red!  I didn't see much difference when I woke up.  On the shower, I noticed the little crevice area on the left side of my nose felt as if it were cracked open a bit and stung when I got water and soap in it.  After I dried off from the shower my face was really peely looking, like after a bad sunburn.  I put on my morning dose of my medicine, then when I looked at my face in the car mirror, in the natural light I could see how red and spotty I was looking.  WOW!

I want to put make up over it for the wedding.  I'm wondering if there is metal in my makeup of any sort.  The Dr. said no makeup.  I always feel that need to push things, and I look abnormally red and spotty today for the wedding.  I thought of the warnings about not using a metal applicator with the Flourouricil and think I probably should not use make up if there is any chance.  I have to admit that before my son's ballet performance last night I did cheat and use a little cover up, which didn't seem to hurt anything.  Probably best not to mess with this stuff though.  I'm photographing a theatre group Monday, and ought to be good and freaky by then.  Maybe the thespians will not notice since they will all be in costumes anyway.  Pain and itching are pretty much non existent at this point.

Day 3 Not Much to Report

Today I am feeling a little more used to the oily feeling of the medicine on my face.  No one seems to notice how bad I look without makeup, I'm not getting any funny looks or anything.  I did notice I am a little red today.  I have not been in the sun, but it is starting to look like I have a very light sunburn.  I should be fine to photograph that wedding tomorrow.

Day 2 - So Far So Good

Yesterday was worse for me than today.  I think I was expecting to look horrible sooner, today, I think my skin actually looks more clear than yesterday. By the way, the exact topical chemotherapy medication I'm using is Fluorouracil Cream, USP 5%,which my pharmacist substiutued for EFUDEX 5% cream.


 I'm trying to get my life ready for the rough days to come.  I owed my oldest son some one on one mom time this summer, so I took him out last night.  Then we went to Target to get stuff I will need. I asked the pharmacist at Target to recommend a moisturizer to relive the pain and dryness for when it gets bad and she recommended Aquaphor by Eucerin.  She also said that Clinque makes a really good product, but I forget what it's called.  I'll have to go get some of that too. She told me her father was getting ready to have this treatment on a spot on his head, when she realized I am having it on my entire face, she looked a little horrified. Anyway, I'm trying to have all this stuff on hand so that I don't have to go out and frighten the public when I need it.

My oldest suggested that the next time I have to do this treatment, I time it over Halloween so I can be Freddy Kreuger.  I don't know where he gets it. 

At Target I purchased a box of rubber gloves to apply the Fluorouracil with.  It's recommended that you wear gloves, or wash your hands really well after applying.  The goal here is to remove the skin from my face, not my hands.  It also says keep it away from metal.....hmmm?  Ooops, science geek coming out, sorry!  I put a pea sized glob on my finger, dab it on my cheek bones, forehead nose and chin then smear that goop allover until it's rubbed in evenly.  The pea sized amount seems to be plenty, I have to admit, it may be just a tad bit bigger than a pea, but no where near a grape size amount.  Official medical terminology is obviously used here as well.

The worst part so far, not wearing makeup!  At the bare minimum I do not leave my house without concealer on.  I look like a bum, nothing really looks wrong yet, it just looks like I didn't put make up on. It looks totally unprofessional at my gallery, but I don't really want to explain to my customers why I look like I should be wearing curlers and stretch pants to match my face.  I am wearing eye liner and mascara today, which seems silly, but it makes me feel so much more beautiful.  I realized how stupid it was to even look at cute shades up lipstick etc, because when my face is one big oozing scab who seriously is going to be like, "Wow!  I love that lipstick!".  I loaded up on Carmex and the strongest kind of lip stuff I could find, I'm not putting the Fluorouracil on my lips, but I've read that dryness and dehydration can get a little bad, and my goal here is to stay comfortable.

Another mistake, I got my hair cut  and although I love the cut,  it was a huge mistake.  Ideally I would be able to put it in a ponytail, but it's too short.  I bought a bunch of headbands and clips to keep it back, but it keeps fighting for freedom and falling into my slightly sensitive face.  This is already annoying me, but  I am determined not to cut it off too short.  The worse part should only be for a couple of weeks, and I can make it.  Whether I cut it off short or not, this going to suck.

I think I should be fine for the wedding I'm photographing this Saturday.  I definitely made a good choice not to wait until the day after to start my treatment.  I guess I feel a bit better today, it's really like nothing at all so far, yet I know what is to come.  The calm before the storm....just like a hurricane.

Day 1 My Journey Begins

I decided to start my treatment earlier than I had planned because after researching yesterday, I learned that it takes nearly a week to start looking "bad".  Today is Wednesday, I  have a wedding to photograph Saturday night, and an Engagement Session Sunday morning,  possibly a local theater group Monday night, then I should be just starting to "show" and ready to hunker down for a few weeks.  I'm  trying to get the worst part over before we go back to school.  Of course this is my "plan."  In a way it is like getting ready for a hurricane, stocking up, trying to think of everything I might need and getting ready.  I took the kids school shopping last night because I figured I won't be able to go out in public to do it without causing a spectacle before school starts. 
I put my first treatment on last night around 5PM.  This am, it seems to be clearing up my acne (yes, 41 and still have acne), getting the dry skin off.  No pain or redness at all.  Can I use this stuff just to keep my skin clear?  I will try to post photos everyday of my journey on this blog.  Can I exchange this journey for one to the Caribbean?

7/26/2011

This year around my 41^st Birthday I decided it was time to get in to the dermatologist.  I was a skier when I was growing up in Washington State, not to mention most of my summers were spent on one of my family’s boats where I had my fair share of burns.  Several times I skied until the sunburn on my forehead was blistered and oozing into my eyes, and no matter how much my mother begged me, I just couldn’t resist those beautiful days of spring skiing.  Throw in the tanning beds I started when I was about 14, and the fact that even though I am very fair completed I loved to work on that tan whenever I got the chance.  I lived in California and Florida most of my adult life, so I had many chances, sailing, motorcycling.  I knew I had not been kind to my skin and it was time for that checkup.

The dermatologist confirmed what I was suspecting, even saying that the way it was manifesting itself on my forehead was something he usually saw in Northern Europeans, yep those mountain, skiing people.  I had many burns on the beach, and sailing, but those skiing burns were by far the worst.  Anyway the damage has been done, and now it’s time to pay up.  At first when the Doctor told me what he was prescribing I was like OK, this isn’t like “real” cancer.  I actually said, “so this isn’t really chemotherapy, it’s like one of those cosmetic peels, like Retin A.”  Wrong!   The explained this is really chemotherapy, just topical so that it kills the cancer cells on my face directly.  Also removing individual spots on the face is difficult and mine is spread all over so this is the best form of treatment.  He did remove a spot from my hand in the office by freezing it.  He also informed me I will need to plan on having this chemotherapy treatment repeated every one to three years the rest of my life.

My doctor explained to me I was going to have to take about a month out of the public eye. Ummm…..problem……. I am a business owner, a photographer with a wine shop downtown Pensacola.  I am also a school teacher and we are supposed to go back to work on August 15^th.  One week after that the kids come back to school.  Oh ya, and I have 3 boys ages 3 to 13 with busy schedules that I have to keep up with.  My husband works out of town during the week, and my family is up in Washington State. 

I sat there, trying to process everything the Doctor was telling me, and trying to fit it into my mental calendar. So many thoughts were racing through my mind at that moment like…. I can’t photograph weddings looking like Freddy Krueger.  Cancer!  What about my boys?  It won’t really look that bad.  Think of Kammy (my friend who has lung cancer) and how much she went through.  I can do this, it’s not an option, and I’m tough. The doctor didn’t feel that I had to start that day, just soon.  I decided to start August 1, after I photographed a wedding I’ve had booked for a while.  There was no way I could not show up to someone’s wedding looking bad, and it’s too close for them to try to find another photographer.  That would give me about two weeks until I went back to work. 

I thought I had it all planned out, until I started looking at online journals of topical chemotherapy patients today.  I could only find two guys from a few years ago.  I’m a Photographer, and a Science Teacher, so photographing and documenting my “journey” seems like the most natural thing to do.  Maybe others will see it, and my experiences will help them understand their own journeys, and what to expect, and even how to schedule it into their lives.  This is my story from day one of my treatment.