Friday, April 4, 2014

I try not to complain much, but....

...this new treatment for the Erbitux rash is taking me down.  Well, it's taking my skin down.  I'm not sure how much more of it I can handle.

Bear with me if this doesn't make sense.  I am hoping that, if I get these thoughts out of my head, I'll be able to sleep better.  I haven't been able to get to sleep on time lately, at all, and I think a good brain dump is going to help.  There may be many posts in the next few days as I try to work through things.  Please don't feel obligated to read my blabbering....this may not make much sense.  Sorry in advance.  If you do stick with me, I'll try to make it make sense, as if we were sitting on a beach, with a warm breeze gently sweeping by us, and as if we both had a delicious adult beverage in hand, watching the sunset over a gorgeous body of water.  I'm not picky - you can pick the location.  :)

As you may remember, when I first went on the Erbitux back in December, my docs put me on a routine of an antibiotic (Doxycycline) to help offeset the outbreak, a topical hydrocortisone cream to help cut down on the redness and swelling, and a homeopathic lotion (calendula cream) to help combat the dryness.  I was also using gentle soaps to clean my face and body, and lots of lotions.

It worked, but at this last appointment, the team recommended that it might be time to switch things up a bit.  Apparently, the body can become tolerant and used to the meds if you're on them for a long while.  So, we figured we would shock the system (gently) and try an acne medication called Epiduo.  It's a fairly new medication, meant to target acne with two medications.  It's fairly strong, and was recommended that I try to use it once daily. every other day at first.

From the Epiduo website:
Typical side effects associated with short-term and long-term use of Epiduo Gel are redness, scaling, dryness, stinging and burning where applied.

Yup.  I've got them all.

Redness - check.  I was instructed to put this med on wherever there is a rash...my focus is on my face, neck, upper torso, upper back and shoulders.  I keep getting asked where I was on vacation, since it looks like I have a sunburn, particularly on my neck.

Scaling - I don't have scaling, like the Little Mermaid does.  :)  I do have flaking....a ridiculous amount of flaking, around my mouth and on my neck.  My poor neck is so dry and flaky that it looks like I'm 115 years old.  Very disturbing.

Dryness - Yup.  All over.  I know I live in a desert, but I am pretty sure I would win in a dryness competition.  And, it hasn't rained here in many months.  Still....winner!

Stinging and burning - I can't describe to you the amount of pain and burning this causes.  I dread nighttime, and to a lesser extent, the morning.  My nightly ablutions include wiping the makeup off, washing my face, then applying a mixture of this Epiduo and aloe vera gel (50/50%, to help ease my skin into the regiment) to my face and neck.  Right now, I am applying the Epiduo full-force on my shoulders, torso, and back.  They don't seem to be as badly effected as my neck and face....here's hoping that doesn't change.

I don't know if I can properly describe to you the level of stinging and burning and pain that my poor face is going through right now.  Here's what I think it happening.

In normal people, someone using this who's only complication is the acne they are trying to get rid of, these side effects might be tolerable, welcome even.  I had acne as a kid.  Pretty bad.  I remember using some OTC stuff to try to get rid of it, and they stung.  Sometimes, it hurt enough to being tears to your eyes momentarily.  But, in a few moments, it was over, and you could go on with your day.

My poor skin is already pissed off.  Not at me, I hope.  After all, this is all for a good cause, and I'm sure my skin wants to live as much as I do.  My skin has been on quite a roller coaster...this Erbitux is an "easy" chemo, in that it doesn't cause much fatigue, no nausea, and very few other side effects; this is the good part.  The bad part is that this rash happens....and, there is some research that shows that the rash is a physical sign that the chemotherapy is working.  Well, on me?  It must be kicking cancer's ass all over the place.  My poor skin, from top to middle, is angry.  Just angry.  Red, irritated, swollen in parts.  It's tender to the touch - taking a shower can, at times, bring me to tears (usually when it's pounding against my upper back for a long time, like when I shave my legs...).  But, I am willing to go through it.  I WANT to go through it.  We'll find out next week (CT scan on Thursday) if it's working, but the tumor markers all seem to indicate that we may have stabilized things.  So, is all of this worth it?

You bet your sweet ass.

Anyways, back to my complaining.  My skin is mad at me.  Now, after 4 months of a routine that was bearable, we switched it up.  And, my already vulnerable skin now has this barrage of medicines being thrown at it, and I think the normal side effects of this Epiduo are magnified.  In addition to the side effects of the medication, my Erbitux rash is on the increase, due to peak today or tomorrow.  Generally, what happens is that I get the chemo last Friday, and then the rash starts to kick in Wednesday or Thursday after, peaking over the weekend.  Meaning today, tomorrow and Sunday.

Yeah.  You can imagine how things look.

I am going to bite the bullet and post a no-makeup picture.  This is difficult for me to do, but since I know there are people who look to my blog for help with their own treatment, I feel like honesty is the best policy.  So, here's a picture of me, this morning, as I sit here.  It's not pretty.  And, I apologize.  But, this is as real as it gets, people.

What isn't showing here is the redness, the dryness.  The area around my mouth is dry and flaking.  My poor neck is as red as anything.  It's just awful.

So, what's the point of this complaining?  Nothing.  I needed to get it off my chest, and I think my poor husband is sick of hearing me talk about it.  He isn't here to hear me in the morning, when cursing is the best way I've found to deal with the burning and stinging.  He has to listen to me moan at night, when I'm trying to clean my face, then put meds on it, then try to find something moisturizing enough that doesn't sting.  I have found one thing that works.  I need to order more.  Everything else?  I literally have to talk myself into using anything.  Even my homeopathic stuff hurts.

I think my skin is in such a state of transition (apparently, the new med helps your skin regenerate itself quickly, thus being able to clear up the acne from the inside and the outside), and this is all normal.  I talked with my pharmacist, and she said that between the Erbitux rash and the Epiduo, my skin will be like this for a while.  So, I have to just stick it out.

But, I'll be honest.  At night, when I have to brace myself to put stuff on my face, and I'm laying in bed and my face and neck are still stinging and burning....it gets real hard to want to do it again the next day.

I am going to give this a few more weeks.  If I don't see a change in the rash, and this doesn't ease up at all, I am going to ask for another solution.

I want to look and feel pretty.  Remember the CA trip we were supposed to go on back on October that got postponed because I went into the hospital?  Well, it's been rescheduled and is coming up soon.  I want to be pretty for that.  I want to look pretty, and more importantly, I want to FEEL pretty.  I'm hoping we are on that road.

I guess the old adage is true - beauty is pain.

Man....I hate that.
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I also wanted to talk about assumptions that people make when they see me.  It takes some inherent strength to not kill some of the people who ask me about my skin, or who presume to know what's happening and then make sure they tell me all about what worked for them, and they could help me get it because they sell it....

Grrrr.

Here's what I teach my kids, and what I want others to remember.

Looks are important.  Anyone who tells you differently is wrong.  People absolutely judge you based on how you look.  It may not be fair, and it may not be right, but facts are facts.  Whether you like it or not, people's first impression of you is based solely on how you look.  If you choose to go into, say, Walmart dressed in pajama bottoms, slippers, your hair in a mess, tank top (sans bra) on top, and makeup that has clearly been on since yesterday - yeah, I'm going to judge you.  Not fair, but there you go.

I am seeing a lot of different reactions to my "new look" as I'm out and about.  Some give me the "poor you" look, which I'm assuming means that it's sad to see a 30-something lady with acne.  Some ask me what the sunburn is from.  I have even had women approach me in stores, telling me that they have products for that "adult acne" that they could sell me, which works much better because it has the root of some tree from Mars or something, and it worked wonders on a friend of a friend who had the world's worst case of documented acne, and now she's working as a model in Hollywood.  (Bullshit.)

I will talk with these folks.  I usually gauge my response to the person on how they approach me.  Anyone looking to sell me something - I'm on chemotherapy and I can't use anything that isn't approved by my doctors.  I've had that conversation continue, to where the person asks (again and again) to get the name of my doctor so we (yes, we) can go in together to make him allow me to use that.  I then tell her, sometimes politely, no, and walk away.  I've had others just stare....I will ask them if something is wrong.  They often look away ashamed at being caught gawking, and that's the end of it.  I've also had people genuinely ask me if I needed some aloe for my sunburn.  That time, I gave her a 30-second spiel about what I'm going through, and thank her for her concern.

I guess what I'm trying to say is that it's super important not to judge someone based on looks.  We are going to - that's human nature.  But, please don't stare.  Teach your children not to stare.  If you have a question, ask.  For me, I use those moments as a teaching tool.

I try to look as normal as possible.  I do not go out into public without my makeup on.  I'm just not comfortable going out without my cover, and that's okay.  I'm trying to come to terms with the acne on my shoulders and back, which is becoming more and more visible as the warm weather hits here.  My shopping has been mostly looking for clothes that cover those areas, both for vanity reasons and to keep my skin covered from the sun.

I think the point of this blabbering is to try to come to terms with how I feel about what's happening, and to see if I can get it out of my head and then process it better.  This is hard.  Your looks are your signature to the world, especially for women...we want to look good.  I know I do.  I want to look pretty for me.  I want to look good for my kids and my husband.

The Erbitux is ease to deal with.  Mostly.  I keep reminding myself that this one awful side effect is much easier to deal with than the constant fatigue and nausea.  And, it is.  But, emotionally, this skin stuff is hard on the psyche.

Back when I shaved my head two years ago, I lost my sense of self, but I was able to redefine who I was by using makeup and earrings to look more like me.  I am trying to do that, but it's really hard this time around.  I don't know why.  I have days where it seems like this is nothing but a minor blip.  Lately, with this new medication, it feels like this is a huge hurdle, and I just don't know if I can get over it.

I'm not stopping the Erbitux.  It's working - we think.  Confirmation next week after the CT scan may help my emotional stability.  I hope so.  This is pretty draining.

But, I'll keep going.  I have to.  No choice.

Now, here's hoping that getting this all out of my head will make today better.  Jules is off to Girl Scout camp, and Kevin has a Spring Fair at school tonight that I volunteered for.  I want to look and feel pretty.  I am going to jump onto youtube, look at some makeup tips, and see if I can put them to good use.

Thanks for sticking with me during this useless complaint session.  I'll try to be much more upbeat next time.  :)

6 comments:

JeanaChurch said...

You are beautiful! Don't think for one moment that you aren't. The people who can't see that don't matter anyway. Keep your head up Sunshine!

Joan Bardee said...

I'm sorry! Complain away, you deserve it. In all honesty, I thought your picture would be worse. But it doesn't matter what I see, all that matters is how you feel. AACK. Hope relief comes soon. Oh, and you need to develop some zingers for these unbelievably rude people.

Try making believe you cannot hear them. :)

Carol Pack Urban said...

Michelle, you are still a beautiful woman who is loved by so many. I am sorry this acne rash is happening and especially that it's so painful! I hope it goes away soon.

Kristi H said...

Michelle ~ No need to apologize for a rant ~ I can soooo relate to everything you said. I am a "looks" fiend, always have been... my Momma made me that way. When I was 13 yrs old, she had me in the bathroom, teaching/making me learn how to curl and fix my hair & make-up... because, "You have to look pretty when you go out". As an adult, I have loosened up a little bit, going out every now and then with just lipstick and a ponytail... but you're right, the world does use Looks as a means of judging you. Sad, but very true. It's true, the pretty girl gets all the free drinks and the good looking guy gets Prom King... But as I've grown older I learned that what other people think doesn't matter. You know why your face is messed up right now, you know it's because of the medicine... Overlook the stares and comments from strangers. They are ignorant to what you're gong through. You are beautiful... I know it sucks, but I know you will get though it - without choking a random stranger in the grocery store *grin*...Tie a big red Lucille Ball bow around your head and go anywhere you want to with a big "screw 'em" smile on your face!!! (and think of what a beautiful lesson you are teaching your daughter, on how to deal with rude people). You are on a mission, you are smart and you are beautiful... Keep your eyes on the prize, don't get distracted by glances from onlookers.

BIG HUGS from far away,
Kristi


drj said...

I'm on Erbitux right now and I feel your pain. The new acne medicine sounds like hell. My doctor has me applying a topical antibiotic lotion twice a day (in addition to the doxy) and it really works wonders - I know because I have the rash all over my scalp and can't get the lotion there! Its called clindamycin. Maybe you can try that instead? I also found a very very gentle makeup remover that manages not to burn or sting my skin. Its called caudalie cleansing water. I bought it at nordstrom's. Hang in there!

awarebear said...

Hi there,

The rash is a GOOD thing as it does indicate that the Erbitux is working. Docs are actually worried when they don't see rash. Over the course of the past 10 weeks I have had two bad reactions post Erbitux infusion, First one on week 3 was horrible, entire top of my head felt like crown of thorns. Frozen washclothes straight from freezer would be hot to the touch after just 5 minutes on the top of my head. Quick action by my doc (on Pres day) got me on a prednisone pack, (24 mg first day, then 20,16, 12 etc. Major help!! Now staying at 10mg day for maintenance.

Craziest thing is now the rash (two weeks from the last final treatment) just showed up on the insides of both arms and cruising down my stomach.

But read about Erbitux and it's a fascinating drug. It's helping us. Really it is!

Been using Aveena Oatmeal soap daily to help.