...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.
**********************************
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. :)
Comments:
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!
April
4, 2014 at 9:32 AM
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. :)
April
4, 2014 at 10:15 AM
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.
April
4, 2014 at 11:20 AM
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
April
4, 2014 at 9:59 PM
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!
April
5, 2014 at 8:17 AM
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.
April
12, 2014 at 9:53 AM
