Looking Normal

[Debi]

On days like today I act like everyone else. I go shopping, I stop for gas, I run all the other errands that everyone else does on their day off. If you look at me, I LOOK normal, I look like someone running around doing errands on their day off. No one sees the person that just can’t believe that maybe she has escaped, once again, and beaten the odds. I have survived alcoholism, abuse, major depression and now, so far (knock on wood, etc.), lung cancer. It’s hard to accept survival. My luck is going to run out somewhere so I make sure I look both ways before I cross the street. Twice.

I have a scar on the right side of my back. Sometimes if I talk too much, while walking, I get slightly breathless. I can’t dance wildly to Twist and Shout with utter abandon and make it through the entire song without losing my breath. My feet and hands are mostly numb and other times they hurt, they have been numb and hurting more often than not for about 2 ½ years. My right back, side and front are numb too. These are my physical reminders. No big deal. My emotional and mental reminders are too many to list. Every pain I get, every sore area, every shooting pain, every cramp is immediately filed away in my mind, in a space that takes up more and more room as time progresses. If I get a stomach ache, although I voice the fact that I probably got that virus that was going around, inside I know that it’s the cancer eating through my stomach and its only a matter of time before I start vomiting blood. Although my hands have been numb off and on for years now, in my head it’s a tumour on my spine causing it. A headache is, of course, a brain met. I could go on and on… but I think most people know what I‘m talking about. As much as I think I‘m different, I‘m really not...

I don’t know the point of this post except to thank Katie and Rick, for keeping the Early Stage forum here. I feel so ungrateful posting the things that bother me, as our friends fight their battles and we lose way too many. Honestly, I think if I could leave this board, I would be able to put my cancer behind me somewhat. But, like others, that’s not an option for me, so sometimes I need to take breaks, the pain is too great, the fear is too great and I need time to heal, to get some sort of mental strength back so that I can return. And I can retreat here to Early Stage and type about silly stuff, at least what must be silly to people in a life and death struggle with this nightmare.

Anyway, I'm glad there is a place to come to where I don't always have to look normal.

[carolhg]

Thank you Debi,

I think that you have put into words the way I and probably many others feel at times.

Prayers

[Kasey]

Wow Debi,

I don't belong here in Early Stage, so I sure hope I don't get booted out. Most of what you wrote, I could have written. You have gone through MUCH more with addictions, etc., BUT the description of what goes through your head.....YES!!!!! That is exctly what we probably ALL think .

We all look pretty normal I guess. But you know what???? We ARE all normal. We tend to call it a new normal, but is ANYONE (even those without LC) ever considered totally normal?? I really don't think so. So this normal is just okay with me.

I just hope we are all here worrying about every ache, pain, sore, stomache ache, headache, pulled muscle, etc. and thinking it is our cancer returning for 20 - 30 years. I figure the 'other' normal people are worrying about 'other' stuff like we all used to. We have just traded what we worry about because we now KNOW what we used to worry about isn't important really at all. Does any of this paragraph make sense ?

I am rambling. But thanks Debi, for the opportunity to actually see in black and white that I AM normal because YOU are feeling exactly like I am. That sounds pretty normal to me !

Love,

Kasey

[Don Wood]

Glad you are here, Debi.

[gail]

We all belong here girl.

My therapist, after my bone cancer drama, asked why I didn't call her. I told her I looked at my computer and realized I had over 2000 people at my fingertips.

Now my fellow teachers at school know my history. Now when I get a sinus headache, I take a poll to see who else has one. And many do. And they tell me, no, we all don't have brain tumors.

stay well and happy

gail

PS I am well and happy even though I am not watching my Eagles in the playoffs.

[Andrea]

Debi thank you for vocalizing what so many must feel.

I feel guilty feeling this way b/c my mom is the one with the cancer, but I suffer badly from the fear.

For example: on Fri, my husband was saying he had dull pains when he took a deep breath. I cried all night worried it was lymphoma or lung cancer. I get super migraines, I worry if it is brain cancer. I had stomach pain, I worried it was pancreatic cancer. My face often gets red, I read and was worried about carcinoid syndrome.

Often times I look around at people in a store and wonder who has cancer. It is so unhealthy to be this way, but I am who I am. And at least I can laugh at myself.

Thanks for the post Debi!

[Andrea]

PS--on the flip side, my mom is not neurotic. She never read about lung cancer. She doesn't really want to know, which is why she knows about this website, she knows who many of the people are through me, but she can't go on it.

Her knees have been killing her, she thinks it is from exericse; I worry bone mets. If she is tired, I wonder why My mom thinks I am INSANE

[Don M]

Hi Debi: just a 2 weeks ago I had a swollen finger joint. I would have ignored it if I had not already had lung cancer 2 times. I went to my gp to talk to her about it. As it happens, I first noticed the swollen joint after a rather intense period of splitting firewood. My gp told me that I could get an xray if I wanted, and that I probably should if if it did not go away in 2 weeks. She said it was probably a repetive stress injury on my tendon. It has been 2 weeks now, and my finger is no longer sore or swollen. I am no longer worried about it, but at the time I first noticed it, I was rehearsing bone mets scenarios in my mind.

Don M

[Kasey]

Hey Andrea!!!!

I do all that stuff too!!!!!! Uh-oh!

KAsey

[Treebywater]

Debi--

I think you are beautiful and amazing and I'm so glad that even though you have to take breaks some time, that you are here.

[nonni]

Hi Debi....I certainly have missed you and was so happy to see you here....Your post???...Can I say...I feel like I was writing it?...Because they are my sentiment's exactly and I don't like it one bit....I hate this new normal...but am very grateful that I am here to talk about it....Will we ever feel the same...I feel soo different...

Every little freaking ache and pain I say 'oh oh'...and then I think....why...why???....I never used to question aches and pains before LC...I just dealt with it till it got better...Now it drives me nuts...I don't think I will EVER feel normal again...

I really hate complaining but I feel like I could vent here and to some of my close friends cause ya all understand...I feel guilty for all our family here who are having so much more to deal and I SWEAR to you all ...I pray for us every single night..I know someday our prayers will be answered and there will be a cure...Maybe not in our lifetime but for our kids...Please God!!!

So what I am trying to say to you Deb...I'm sure most of us feel the same way you do....only you took the words out of our mouth and put them on paper...Thank you Debi ..you are truly a gift to us and we love you...please don't stay away....Love to all and God Bless....PamS.

[Frank Lamb]

Debi,I too am glad you are here.You were AWOL a few days or mabe on a break and I was hoping you were not in the danger of those wild fires we were reading about.

[blaze100]

Hi Debi, Don't give up on the numbness around your incision ...mine was very numb but gradually and very slowly the feeling did come back completely ... it just took 5 years. Barb

[Debi]

Okay Andrea, you made me Google "carcinoid syndrome", since sometimes I think my face gets red too.

And Kasey, you definitely belong here, apparently you're as crazy as the rest of us.

[Kaffie]

Debi,

I can identify with every word you wrote.

We are so fortunate to have found ours

at early stage but it haunts us just the

same and we know that one day, some day

one of us may end up with a doctor telling

us we are in that percentile who got the

recurrence.

It scares the heck out of me almost daily,

I'm constantly finding new lumps and bumps.

My latest was two weeks ago ,a tiny spot on

my neck that I can't find again, was it my

imagination or am I in for a big shock at my

next scan which isn't until March?

This is my first time at the 6 month wait

for my scan and I'm already going nuts, I

want to get it over with now and get on with

life.

I don't think there ever will be a normal for

me again, unless you call thinking about LC

every day and going into panic

every few months normal

Your writing does not seem silly, we are

all in this struggle together, some will win,

some will lose

I do understand your need to take breaks now

and then. I am also a Major depression

survivor and I am the only one out of 4 children

in my family who is not an alcoholic, I barely

escaped that one. Didn't suffer from physical

abuse but did mental abuse for 22 years.

Your life's experiences has helped you to feel

real empathy for others, there is no need to

apologize for that. Anyone who has read your posts

knows what a loving, caring person you are, and the humor doesn't hurt

Take your breaks and come when you can. I have to pull away now and then for much the same reasons as you.

I will be eternally grateful for Katie and

Rick for this web site and to the regular

posters whose strength and desire to help others

keeps them here day after day.

God bless all of us

Kathy

[jang]

Debi,

Thanks for this post. You took the words right out of my mouth! I have to take breaks every now and then too. My friends tell me that I should not read the board or I will never forget. Forget???? Who are they kidding? I will never forget. And I think the help and inspiration that we can offer other people is worth it. I have also thought that maybe I shouldn't wear my bracelets, because everytime I look at my hands, I remember that I had lung cancer. But maybe I don't want to forget.

Yes, the board does depress me sometimes, but it also inspires me. So, please stay with us when you can. You are truly missed when you are away.

[chloesmom]

Debi,

Ok, this is my first chance all day to reply--I read this at work this morning and then got too busy to write.

Funny you should post about this today of all days because I have to tell you that I spent some time yesterday in the "Oh, no, now I must have oral cancer" mode. It all started with me running my tongue on the inside of my upper lip and it felt "funny". LIKE I WOULD KNOW WHAT IT NORMALLY FEELS LIKE--I DON'T USUALLY WALK AROUND RUNNING MY TONGUE OVER MY UPPER FRONT TEETH!!!!!

Anyway, that's what I did, and I was at work. Of course I run straight to the bathroom (poorly lit, and of course my eyes don't see well close up anyway anymore, but nontheless, I'm looking in the mirror with my lip all curled upwards, and I see a red (or is it black?) dot on the inside of my upper lip.

My friend at work is a 5 year survivor of early stage oral cancer that started out as nothing more than a little black dot under his tongue.

Self diagnosis came really quickly, but I reasoned that if I could pick at it and it disappeared, then it was something other than cancer. So of course I scraped at it with my fingernail, and it turns out to be a very small blood blister that I probably got from my toothbrush slipping and scraping the inside of my mouth!!!!!

I now have this area so irritated it feels terrible, and nothing but time is going to be needed to make it all better again.

Anyway, that's my silly paranoid story of the week.

Don't worry Debi, we're normal, we really are, we've just had to endure some highly stressful, unusual things happening in our lives.

At least I think you're normal, but looking at it all through these eyes, geez, I can understand where my judgement wouldn't count for much!!!!!

Keep feeling good, ok?

Cindy

[Andrea]

Cindy,

I am cracking up b/c I have done the same thing. I had a pimple on my tongue, I was sure it was oral cancer. I was sooo worried. I PAID out of pocket to get into an oral surgeon that day. He said it was nothing, but to come back in two weeks. Well that was not enough for crazy me. I saw another dr the next day who said the same thing :) Meanwhile I picked at it and made it worse. This was about a year ago.

I have a tingling in my neck, pins and needles feeling, I have felt it for the past two days on and off. Of course I worry it is a tumor, nothing something simple like a pinched nerve, anxiety, etc.

We could all start a Neurotic Anonymous club or something. My mom would love to sign me up My new nickname is BUBBLES. Why? B/c I was worried when I saw bubbles in urine.

[Debi]

Oh my gosh.. I had to post a reply to Cindy and Bubbles ....

I must have bit my tongue this weekend and it was really sore. I know I have bit it before but don't remember it hurting so bad.

Sunday, I spent about 10 minutes with my tongue hanging out, looking in the bathroom mirror. What I surmised was there was something majorly wrong with my tongue, there were little lines in it that I had never noticed before, a little bump on the side of it that you could see when you curled your tongue and tilted it to the left and the color of my tongue just looked wrong. Verdict: Tongue Cancer

I started yelling for my son, who was contendly playing video games, and when he came running I started screaming "Stick out your tongue, stick out your tongue". The poor kid stuck out his tongue while I pulled it as far out of his mouth as I could so that I could compare tongues. Of course, HIS tongue was perfect and I let him go back to his video game while I stayed in the bathroom with my tongue hanging out.

So now it's Tuesday and my tongue has healed where I bit it. But I have a birthmark on the side of my neck that appears to have changed and I have an appointment with the Skin Doctor..of course like any good hypochondriac I have been to all the skin cancer websites..

My Oncologist 6 month checkup is in February. I draw comfort in the fact that I will be 'normal' again for a couple months after that ..

[Ry]

Ok that's it Debi...I am calling 1-800-for a child right now. Interrupting a video game???? What were you thinking?

[Andrea]

Debi----through my THOROUGH research I learned that oral cancer rarely hurts, so a mouth sore that hurts is a good sign.

I compared my tongue also to my mom and to Brian I actually had a relapse I did not mention, I noticed a different spot under my tongue, so I went back to one of the oral surgeons who literally told me "just stop looking in your mouth, you are fine".

I never in a million years would have thought that dental visits would scare me until I learned that they look for spots too!

I just researched my tingling, it is a fibromyalgia and stress symptom. I hope that is all it is

Bubbles

[LucyB]

My heartfelt sympathy to you, Debi, you are a fighter. I have nothing compared to what you are going through. I will keep you in my prayers.

[Debi]

Mercedes,

Thank you for your prayers but actually, I am very lucky. Three years ago this month, my doctor found a 'shadow' in my lung (I actually count my 3 year date in June, the day it was taken out). My journey, so far, has been easy compared to so many others.. and I am still here, sharing life with all these great people.

I couldn't find any other posts from you so I wanted to welcome you to the board. Tell us a little about yourself??

[Patkid]

Debi,

No one could look at that beautiful face and ever call you normal.

You are exceptional and out of the ordinary and wonderful.

"normal" is not for you.

You are a long way from normal. Way beyond it and way better.

and

we love you just the way you are.

P

[Patty]

Debi,

That was wonderful the way you put all that to words. Really makes me feel not so different too and I've decided there is no so called "normal". And I feel so bad for the too many others who are going thru so much more, and guilty for griping at all.

I too have survived other major "stuff" before this lc.

Anyways, the mouth & tongue stories had me rolling on the floor with laughter (mentally of course, since I'm not physically able to do that right now without hurting myself), especially when the dr said to just stop looking in her mouth and inspecting other tongues. I'm still laughing! How do you make these emoticons work anyways? Thanks again to you Debi and everybody else-Patty