Well.... it's January 30th so here I go!

I had a really hard time getting myself motivated to make the appointment for today, but I'm goin in!  Part of it for me is that I HATE needles, and I know if my dermatologist sees any weird spots it means needles.  I think I'd rather go another round of the topical chemo than take a shot.  I'm a wuss.

My life has been totally busy, my husband has had kidney failure and needs a transplant, I'm teaching full time, taking care of our house, three boys etc.  I can think of a million excuses to avoid this appointment today, but the fact is that it's important.  Very important.  I'd much rather keep up with this stuff than find out it's gotten out of hand and I could die.  My youngest is only 4, he needs me around for awhile, especially now with my husband's illness.  So... hi ho hi ho it's off to my dermatologist I go.  I'll update you all soon of course.  Cross your fingers, toes, legs, arms etc for me!!!

No Dermatologist until January 2013 NO MATTER WHAT!

I really appreciate the email and comments I've received from readers of my blog.  I hope it has been helpful to some of you as to what to expect from topical chemotherapy.  I really hope it inspires and educates rather than frightens anyone.  I'll willingly do it again, but I'll be a little better prepared next time. I reread my blog for the first time in a long time today, and much of the experience I have totally forgotten.  I will need to reread it again before I start my next course so that I have all the proper lotions on hand, and I will never forget to talk to my doctor about pain management in advance. 

My dermatologist says I don't have to go back and see him again until January 2013.  I have to tell you that in early June I broke out in a rash/hives on my arms and legs and flew to California for my sister's wedding. Perfect timing of course!  I just could  not bring myself to go back in to the dermatologist, and luckily it cleared up and went away on it's own.  He is one of the nicest doctors on the face of the Earth, but I just couldn't stand the thought of seeing him again before January. 

It's Summertime here on the Gulf Coast of Florida.  This summer I've played outdoors with my kids quite a bit.  I wear lots of hats, and sunglasses, and my sunblock everyday.  We go to the beach!  Yep, and I wear a swimsuit!!  We go early around 9 or 10 AM  or later in the afternoon, around 5PM.  Not too early or too late though because everyone around here knows that sharks eat breakfast at sunrise and dinner at sunset and I already have enough to worry about.  I apply sunblock to my kids and myself before we even leave the house, that way it gives it lots of time to soak in.  We don't stay at the beach all day, an hour or two is plenty for the kids to swim and play.  No sunburns or over exposure on any of us this year using this method.  It's possible to still enjoy summertime, the beach etc, without getting so many of the sun's harmful rays.  No more sunbathing, but it's more fun to play with my children anyway. 

One of the best things happening is it seems that the days of getting those dark tans is quickly becoming a thing of the past.  It no longer seems so cool to have a dark tan.  In my eyes I see that and I see damaged skin, much the way I see someone with a face wrinkled from years of smoking.  It doesn't look healthy in fact, it looks unhealthy. I really dark tan looks, well......nasty.   I don't mind my legs being white anymore either, I once tried to have the darkest legs on the beach, I'm now quite satisfied with my white legs.  I'm satisfied to have another summer of playing with my kids and being here to love them and laugh with them.  I still pray the skin cancer stays at bay so I will be here for my children for many years to come.  I don't expect you will hear much from me until January 2013. 

A final note......I am really interested in all of the media about tanning beds lately.  I started tanning beds around 12 or 13 years old, until a few years ago. I always thought I was bulletproof and they would have a cure for skin cancer before I got old.  I totally support legislation that bans minors from using sunbeds.  I found it rather amusing that one state had a stipulation that they must have signed parental permission.  I wondered if parents could sign for their children to purchase a carton of cigarettes in this state.   Just a thought. 

Keep me posted on things.  I read all of your emails and posts, and keep you all in my prayers. 

Christina

I'm Doing Well

It's been awhile since I posted, I've been really busy with work and my kids.  I started the school year out looking like I did in the photos. I know it wasn't easy for everyone around me to look at me, but they handled it well and were very supportive.  The treatment was difficult, and at the time I didn't know how I could ever even imagine going through it again.  My doctor keeps a close on me, and has told me it could be as often as every year  for the rest of my life, or maybe every few years.  When it's time, I will do it again. 

How am I feeling now?  I feel great.  The experience led me to evaluate my life.  I ended up closing my gallery and photography business to spend more time with my family.  I still stay super busy teaching and getting my boys to all their extra curricular activities. 

My skin looks better than ever.  I get compliments on it all the time.  I think some people think that what I went through was more of a cosmetic procedure like Retin A or something. They're nuts! Topical Chemotherapy is not a cosmetic procedure, although it is healing up rather nicely.  The pain and discomfort are only a distant memory now.  I've done so much living since then and it does not feel like it is the center of my life anymore, as it did when I was going through it.  It does end and it does get better!

My life has changed for the better in a few different ways.  I have more of a desire to be healthy.  I've lost over 30 lbs after I ended my treatment.   I've changed my diet, and that of my family so that we eat a lot more fresh veggies and lean meat etc.  I've started running again which makes me feel wonderful, (for the most part on the treadmill out of the sun)!  For me it's Spring Break and for the first time that I can remember I am avoiding the sun.  I went to a beach restaurant with my friends and kids and found a beautiful table in the shade.  My kids get slathered in 50 SPF, and I am quickly accumulating the cutest hat collection in town. 

So hang in there.  Trust me, if I can do this you sure can!  I'll update my photo one of these days.  Prayers to you in your journeys.  Don't let this experience get you down.  It sucks!  No question about that, but grow and learn from it, help others learn about skin cancer prevention, or figure out what is really important in your life.  While you are hiding at home in the cool shade you should get some extra time to think about these things. Don't dwell on the past, think positive about what you can do now and in the future.  If you know someone else going through this, understand they may be a bit irritable, give them your support, and bring them some ice cream!

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.