Warning:
This post is pretty much a pity party. Sorry 'bout that.
Language alert ahead, too.
Well, the chemo last week wasn't as bad as I expected (especially since I was
expecting another round with the pump, originally). Chemo was on Tuesday,
and it was truly wonderful to leave CTCA without the pump.
Wednesday, I was slightly nauseous and didn't do anything. No shower, no
getting out of the house, etc. But, by Thursday, I was able to go back to
CTCA for my chiropractor appointment, so that was nice.
I had some residual nausea over the weekend, but after thinking about it, it
looks like I was taking my anti-biotic (for the Erbitux rash) with the rest of
my supplements in the morning, and that was what was causing the nausea.
Last night, I took it with dinner, away from all of the other meds, and I
didn't have the nausea. Score!
While this past round went really well, physically, emotionally I've been a bit
unstable. Things kind of came to a head yesterday at CTCA, and I had a
breakdown in the clinic waiting room. I can't pinpoint a single thing
that has caused me all of the grief. I know what's causing a lot of it,
though.
The Erbitux rash (or acne, which isn't nearly as nice to say) has kicked in.
There was some debate on how soon it would rear its ugly head, and the
chemo nurse said it might take 2-3 round before I saw it.
How 'bout 2-3 days?
Over the weekend, I started noticing some tenderness on my face, and an
increase in general ickiness on my face. Pimples are gross, let's be
honest. And, that's what the rash is - pimples on my face. They
could also migrate to the rest of my body, which makes me very anxious.
It's awful.
I think the breakdown yesterday was a combination of many things, but in all
honesty, this acne has thrown me for a loop. I've gained weight, about
10-15 pounds, depending on the day. I feel fat all the time, and it
doesn't help that I haven't been to the gym. I'm trying to eat healthier,
but I swear I'm eating more than ever. I'm making a very concerted effort to
eat right (and I'm craving salads, fruit, veggies, etc.), but I'm still up in
weight. *sigh*
On top of that, the newness of not having hair is gone, and I'm ready to look
normal again. The stares I get in stores, when I'm out and about, etc. is
getting annoying. I can't grow my hair back, because the scalp
sensitivity is still really intense. Matter of fact, I'm on a two-week shave
schedule for my head. Any longer than that, I can't stand it. I
often forget when we're out that I don't have hair, so I'm super self-conscious
about why people are staring at me.
And, now, I'm worried that they are staring at the bald, fat chick with acne,
wondering what shit happened to her to make her look like that. I feel
like I need to walk around with a sign, explaining why I look this way.
As a woman, whether you like it or not, you are defined by how you look.
I've worked very hard to get to a place where I'm comfortable with how I
look, and confident that my image reflects who I am. Well, I was before
this all went down. Now? Not so much.
I was doing okay before the Erbitux rash kicked in. I could rock the bald
look, as many told me. And, that was good. I was able to make my
face up with the help of my good friend MAC to reflect an image that I was
happy with. Right now? I'm only able to try to cover up the
volcanic eruptions on my face.
I get that I'm probably the only person that is noticing them. If I'm
honest with myself, the acne isn't horrific yet. It's fairly easily
covered by makeup (and I'm headed to my friend Stacey at MAC tomorrow to get
some more help). I'm sure that I'm much more conscious about them than I
need to be.
And, if I think about what my med-onc team said, the more I see the rash, the
more it means that the Erbitux is working. So, that's something to be
happy about, I suppose.
But, I hate the way I look right now. I feel like a fat, nearly-bald,
ugly woman. That sucks. Big time.
My breakdown yesterday was a combination of things. I'm halfway through
chemo, but I'm only halfway through. And, that's if things go well and as
we want them to. If they don't, God only knows where I am in the process.
I could be at the beginning of a *very* long schedule of chemotherapy.
I'm not sure how I'll handle that. The thought of continuing with
this process for another several months is overwhelming and completely
terrifying. On top of that, I am realizing that the chemo is really
starting to effect my ability to do normal things, like be out in the heat and
the sun. Exposure to the sun has to be kept at an absolute minimum right
now - the antibiotic makes me sensitive to sunlight, the chemo makes me sensitive,
the anti-acne meds make me sensitive. And, the heat just kicks my ass.
It's only June. Damn it.
I asked my doctor for a handicapped parking sticker yesterday. I didn't
want to, but I think it's the right thing to do. When I'm walking into or
out of a store, the heat radiating up from the blacktop is unrelenting.
It's absolutely exhausting. My hope is that by parking closer to
wherever I need to be, I won't expose myself as much and maybe I won't get as
tired. We'll see.
*sigh* Yes, the pity party has started. I am trying to pull myself
out of it. So far, it's working pretty well. The crying jag I had
yesterday in the clinic helped, though it was pretty precarious for the rest of
the afternoon. The thing that put me over the edge yesterday?
Roxann, my care manager, is moving to CTCA's new hospital in Georgia to
train the new nurses and care managers there. I said goodbye to her.
I hate, hate, hate goodbyes. Normally, I'd have been ok with it and
might have teared up a little bit. Yesterday? All out tears.
Luckily, Jessica, my patient advocate, was there to help me get through.
She just happened to have stopped by and was there when I needed a hug
and a tissue.
Today feels a little better. It's Levi's birthday, and I'm hoping to make
today fun for him. He's working, but should be home early. I'm
sending the kids to daycare today, then going to the gym. After that, I
have plans to meet some of the girls from work for lunch. After that?
Who knows. But, I'm going to take it easy. I need to get out
of this funk. I need to accept it, and let it flow, but I also need to
get out of it.
My birthday is Thursday. The kids leave that day for Milwaukee, and I
want to enjoy the alone time with Levi while they are gone. I usually am
super-excited about my birthday. It's silly, but I love it. I love
waiting for the calls from each of my parents and my brothers. (It's a
tradition....) I'm hoping I can wake up with that same excitement on
Thursday.
As part of this pity party, I'm wondering if this will be my last
birthday. Isn't that awful? I'm dreading getting older. 36
isn't old, but it's terrifying to think that that's as old as I'll ever be.
I don't want to be 36 forever. I want to get old with Levi, to be
here for my kids.
God, I hate that I have to go through this. It's just not freaking fair.
I try not to think about the whys. Why am I going through this?
What have I done (here or in a previous life) to deserve this? Why
are there people who are evil, horrible, awful human beings that get to live
long, healthy lives, when people like me who are just trying to live a good
life having to fight for every second on this Earth?
And, to that, I say, fuck you, cancer.
All right, time to get on with the day. Sorry about the downer post.
But, that's how I'm feeling. It's been a rough couple of days, but
I'm hoping that I'm coming out of it. I think it's normal to have the ups
and downs, and in the past, you all have reassured me that this is normal.
That doesn't make it any easier when I'm having a mental breakdown in
front of the other patients at CTCA. :)
Here's hoping I can make it through the day without crying. We'll see.
I feel another one building....let's see if I can stave it off.
Comments:
Sometimes
it's just best to let the tears flow...
Sorry you are having a rough time right now. You are a beautiful, vivacious
woman, who lives life to the fullest. This is what everyone sees when they look
at you!
I had a hard time dealing with my hair loss--esp. the eyebrows and eyelashes!
It took me a lot of soul searching to get past it. Finally I just decided that
I wasn't going to hide, I had a life to live and I couldn't waste my time
worrying about what others are thinking! But there were a lot of tears before I
got to that point!
I'm glad you are getting to the gym; I think exercise will make you feel much
better.
I hope you enjoy this next week--sounds like there are a lot of fun things
going on!
Love you!
June
19, 2012 at 8:16 AM
You
had my attention at "language alert". I love me some "on the
blog" cursing. And lady, you're entitled.
I wish I had some magical words that would make you feel like Drew Barrymore,
Gisele Bundchen and Jessica Simpson all rolled into one. But hey, if I had
those words - I'd market them on an infomercial starring Mary Hart and be a
gazillionaire. (Yes, I'd share with you! :) )
In all seriousness - you are such a brave lady and an inspiration to me. I
thank you for sharing your honest thoughts and experiences. I continue to be
humbled by your strength.
June
19, 2012 at 8:18 AM
The
consolation they give me about the Erbitux rash is that it means that the drug
is working fine.
People who doesn´t get the rash doesn´t benefit from antitumor effect.
June
19, 2012 at 8:33 AM
Hey....
don't stave off the emotions.... LET THEM POUR! Let everyone know how you
feel... cancer SUCKS, cancer shouldn't exist, so FUCK CANCER! Let the world
know how you feel and we will fight with you! I've been checking your blog
daily so see if you had any medical or emotional updates and was hoping that
"no news was good news" - that's the motto in my family. So the news
isn't what you want it to be... we understand that.
I think we need to make another cancer shirt... around here the kids at my high
school wear "Tuck Fully" shirts when the football and basketball
teams play each other. Get it? We need to come up with something like that.
That way the world and cancer will know that we are not sitting back letting it
get to who ever it wants. I know how you feel... I also have had my crying jags
for you and my aunt Teri who passed from breast cancer years ago at an early
age (she was in her late 40s). But the biggest thing you have going for you are
all the advances she never had the chance to take advantage of. From the
beginning, family and friends were always saying things like "let's see
how much time Teri can 'buy' with her treatment" etc. Seriously, I don't
get that vibe with what is going on with you. This is going to work out....
keep positive, and when you can't keep positive then FUCK IT! LET IT OUT GIRL!
Scream, yell, swear, cry, call, email, facebook, run around the house like a
maniac, punch holes in walls (that's what the Home Depot DIY section is
for!)
Love ya girl! I can't wait to see you next week!
June
19, 2012 at 8:37 AM
I
got it.... how about a shirt that says on the front
Yea, so I have cancer ------> (pointing to the back side of the shirt)
----
I
I
V
BUTT cancer doesn't have me! (at the bottom of the shirt on the back)
And we can change the "I" on the front to "my friend" and
the back to "her". We can use this as a fundraiser or just something
fun in support. What do you think?
June
19, 2012 at 8:42 AM
Melanie-
I LOVE THAT SHIRT! I would totally buy one of those ^.^
June
19, 2012 at 9:12 AM
More
Birthdays!!! Celebrate big time each and every one, you will have many
more.
I too remember the "looks", but I would look back and smile - hoping
that that exchange made an impact and they gave thanks for their own
health.
The crying jags are exhausting, mostly because I found it hard to turn them off
once the tap was open. But they are healthy -- you are under so much stress,
your body has to release it.
I felt ugly and still do, but I also remind myself that my hair (or lack of it)
and looks do not define me even if that is what strangers focus on. Cancer
doesn't define me, but my heart and my soul and my fight with Cancer does
define me. I too forget what I look like to others, and then catch a glance in
a mirror and can feel the knot in my stomach. But I take a deep breath and move
on, or try to.
You have every right to feel every feeling and emotion you have -- let it out,
but most importantly, keep the faith. As you know Cancer has a schedule of it's
own, but stay focused and stay strong.
You are beautiful and you WILL have a happy, happy birthday.
June
19, 2012 at 10:07 AM
More
Birthdays!!! Celebrate big time each and every one, you will have many
more.
I too remember the "looks", but I would look back and smile - hoping
that that exchange made an impact and they gave thanks for their own
health.
The crying jags are exhausting, mostly because I found it hard to turn them off
once the tap was open. But they are healthy -- you are under so much stress,
your body has to release it.
I felt ugly and still do, but I also remind myself that my hair (or lack of it)
and looks do not define me even if that is what strangers focus on. Cancer
doesn't define me, but my heart and my soul and my fight with Cancer does
define me. I too forget what I look like to others, and then catch a glance in
a mirror and can feel the knot in my stomach. But I take a deep breath and move
on, or try to.
You have every right to feel every feeling and emotion you have -- let it out,
but most importantly, keep the faith. As you know Cancer has a schedule of it's
own, but stay focused and stay strong.
You are beautiful and you WILL have a happy, happy birthday.
June
19, 2012 at 10:07 AM
Happy
birthday to you and Levi. Everyone is entitled to a down day.
June
19, 2012 at 5:41 PM
