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It just never stops.....

Oct 14, 2008 03:57AM - 20 comments

  Why is it that everytime things start looking good, BAM! we get hit once again. I know that life always has its ups and downs, but shouldn't we get a chance to enjoy some of the ups? At least for a little while. But no, it is the equivalent of for every step forward, you take three backwards. I can never just give up, that is the first promise I made to myself after my dx, but I can't help but wonder sometimes why we can never get a break. Why can't we just once make it to that so called light at the end of the tunnel? Why can't even a few of the clouds have silver linings? I know, I am thankful to just be alive, but damn, just how much do we have to go through to be able to enjoy it?
  I hate feeling like this and normally I can push it to the back of my mind and get past it. But for some reason, I am having a hard time doing that right now. And it is not just the passing of our close friends that has me like this, it is just everything right now. And with all of the **** we are having to put up with here, I can't even come here to help ease any of it.
  What was it, 2, 3 days ago, I was so excited about finally having eyelashes and being able to wear makeup again? Well I guess that will be another short lived excitement. Every time I change chemos, I have this bad habit of running my fingers through my hair and gently pulling, just to reassure myself that it is not going anywhere. Natually I have been a little anxious the last week or so as I just started this chemo 3 weeks ago. Well today, my fingers came away full of hair. Dammit, is it too much to just want to have hair? So once again, I will have to sit and wait, wondering if it will only thin or just all come out again. I have never been lucky enough to have it only thin. I had noticed the last few days my head had started itching. I have come to realize that when my hair is begining to fall out, it causes my head to itch. You know, I have accepted the fact that I have cancer, and I have also accepted the fact that I will always have chemo, but I just cannot accept the fact that I can't do all of that and have hair at the same time. The first time was bad enough and I knew that when they told me that I would always be on chemo, that it would eventually happen again. But that didn't make it any easier the second time, and it is not any easier the third time either. I think that this time is even harder than the last time because it is just coming back. It is funny how something as small as a pony tail can come to mean so much. You would think that by the third time I would be able to just deal with it and think nothing about it. But I can't. My friends and family mean well but they just don't get it. Oh it will be ok, it will grow back. I know all of that but thats not the point. The point is that it is happening again.
And what was even worse was that this all happened today while I was at the prison visiting Dave. It was so nice and I was so happy to see him and then came that BAM. All I could do was cry. When I got home I was completely drained. But when I laid down and tried to go to sleep, that wasn't happening. That is the time when your mind starts wandering and you start thinking all kinds of things that you shouldn't be thinking about, and sleep is impossible. That is why it is almost 4am and I am still awake sitting here at my computer. Then I started thinking how petty I was being. I thought of Marty and what kind of day she is going to have today, I thought of Donna and what she is facing, I thought of TC and her surgery. What the hell is hair when compared to things like that. I went through these same emotions the last time and I am begining to realize that they must go along with it. Losing your hair is hard enough, but then you have to deal with all of the emotions that go with it, guilt for whining, anger that it is happening, fear that one of these days it might not come back, the heartbreak of seeing how much it upsets my granddaughters, the embarrassment of seeing the pity in peoples eyes in public. We can only deal with things so much before it finally begins to get to us. I can only pray that none of you have to keep going through this.
  Thanks for letting me ramble on and on and for letting me cry on your shoulders.
         Chris

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by lonewolf07, Oct 14, 2008 04:07AM
Emotions cannot be compared.  Your are no less real or less painful than another's.

MH is a place for those of us to cry on the shoulders' of strangers and let out the poison of our pain.  Are false eyelashes a possibility?




by SimplyStar, Oct 14, 2008 04:47AM
hey I can't sleep either.  I am gonna need a daughter to replace the one I just lost, figured you might just be the one for me.  You know I ain't happy unless I am researching for some one.  Will you be my adopted daughter, Chris?   Whats a little hair loss, look at how good looking Yul Brenner was.  If you do lose it all, maybe you can use that mascara and draw a few curls on the front.  Make a big smiley  right on top your head. Get someone you know to paint you a pretty picture on it. Maybe a tree with some nuts, just to remind you of me.  lol   Get you a couple of real ranchy tee shirts, instead of seeing pity, you will see laughs.  Maybe those grand daughters could give you some hints on pictures.   Tell them you are going to a tatoo  artist and have  hair tatooed, see what they say.  Bet you would good to have bright Orange  hair, you could always get a job then, with the DOT, or maybe selling fruit at the market.  I am trying to make you smile hun, One of the big pictures they had for Leslee today, was her dressed up like a HOBO clown, the other one was the one I have on my web site, but we all agreed, the clown , was Leslee.  I know you feel down right now, vanity is a horrible thing that all women have,  Cancer takes its toll on the looks we pride ourselves  on, but it is the inside beauty that counts, and you are so beautiful inside that it shines through.  We need to start up the joke  posts again. Don't agnoize over the ones that have passed, they would be the first to tell you to keep fighting, there are things out there in the world that you haven't done yet, so you better get busy and do them.  And by the way , I am old enough to be your mother, it would be nice to have one, without the stuff of going through all that 9 months.  Take care hun, Love Marty.

by Laney8463, Oct 14, 2008 05:16AM
Hey Chris,
You have every right to kick and scream and whine to all of us. Sometimes Life just really s*u*c*k*s!!!!  I think we all have those times, when we just can't put on the happy face anymore. When we just need to let it all out. I couldn't say anything better than what Marty has just written in your journal. Take a deep breath, smile at her post. I know I did. Im sure you will agree, that Marty is an angel on loan to all of us from God. She is an amazing woman and friend to all on here. You too are an amazing, strong woman. Strong people do get "down in the dumps" too. No reason to apologize for whining....Geeze, you are entiltled girlfriend. This too will pass. I am in your corner Chris... Praying for good news and rays of sunshine for the women on this forum.
God Bless you Chris...
Love
Laney

by gma718, Oct 14, 2008 06:47AM
Hi Chris - The reason we are all here is to BE THERE for each other...You have every right to feel the way you do...getting it out always makes a person feel better...You are a beautiful, thoughtful, wonderful person no matter what and you need to keep the fighting spirit inside..Hopefully, things will look better after you are rested as you have had a draining day and that does play a large part of our emotions....I am always here if u need....Take Care....Love ya, Gia

by bohan54, Oct 14, 2008 07:17AM
Dear Chris,

OK, I'm going to play amateur psychologist here.

The loss of hair is a symbol of all the other losses we experience as cancer patients.  I know that sometimes I just want to forget I have the disease, then I pass a window or mirror with my reflection or I scratch an itch on my head and BAM there's that pathetic woman again.  Unless I wear my wig in public, people look at me differently and I DON'T LIKE IT.  

As I was vomiting in the car on the way home from my stent procedure yesterday, I looked at my husband and said, "This is my life now, shuttling around from one medical facility to another and feeling like horse dung."  He lets me wallow in misery for a bit and I so appreciate it.   I'm glad that you feel comfortable enough to unload your frustration amongst us here in the forum.  We definitely GET IT!!

Love ya,
Sharon




by TrudieC, Oct 14, 2008 07:22AM
Vent, yell, cry, scream.  You are using the forum for what it is meant to be used for.  This is your place.  The next month or so will be a tough one here and I hope all the ladies will let out their thoughts and emotions.  This is a good thing.

Hugs, Trudie

by Knotmeg, Oct 14, 2008 07:25AM
Chris.... Feel how you want. Scream and complain and be angry. Want and wish for hair and eyelashes.... feel these things. No one will and should deny you of that.

I'm sorry you're having a bad time right now... low feelings. Just know that there is this girl in Baltimore, thinking of you.

Love, Meg

by vegas2cr, Oct 14, 2008 07:33AM
Chris I loved Marty's post and could never say it better... But heres the deal.. I have 2 brothers one older one younger and I always wanted a sister... since Marty is adopting you as her daughter can I adopt you as my sister.. PLEASE PLEASE.   We could laugh together, cry together and even maybe someday have a pillow fight for real... of course you won't hurt me like my brother did... LOL...

Chris its difficult that we have a chronic disease that shows so to the public...But you are a fighter and we will win.. you hear me we will win... I would not let my little sister down.. I am always here for you... Love you Ronni

by jamiann5, Oct 14, 2008 08:18AM
Chris, You have every right vent and you should never feel like you are being petty.  You are such a rock for everyone on this forum.
I love Marty's post, she has such a way with words.  If there is anything that I can do for you, please let me know.
love,
jamie

by cirella, Oct 14, 2008 08:29AM
Chris, I feel your words straight to my heart.  I sure wish I could hug you right now!  I always say that people have every right to feel exactly what they feel.  I'm glad you expressed it here.  You have friends here and now a new mom and sister!  = )

I love you.  
L

by marie3B, Oct 14, 2008 09:06AM
Chris,  I am sorry you have to do this yet again.  I love you.

Marty,  You are a wonderful mother.  Any of us would feel honored to have you adopt us.  Thank you for your words of love and support for Chris.  

Ronni,  I know you'll never let your new sister down.  You never let any of us down.

All others posting above me,  I think you are all great.

Marie  

by JC145, Oct 14, 2008 10:48AM
Chris .. I get it ... and totally understand what the hair loss symbolizes for you.  Keeping you in my prayers that this chemo works and you get a break .. and a full head of hair to go with it.  Judy

by Jan214, Oct 14, 2008 01:19PM
You are right.  It bites a big one and I think the hair thing is so bad because we, a.) look like coneheads without it b.) it has always been a symbol of our womanhood & cancer doesn't exactly make you feel sexy and bald sure don't, c.) no matter how much people try not to, they stare at you like you are the main attraction in a freak show and d.) Victoria's secret doesn't make lingerie that goes with bald.  You need G I Jane undies for that. (I look like my brother in drag)
I have kept a hat on because I hate my hair coming back curly and I don't know what to do with it.  Also, I figure it will be less of a shock when it does fall out again.  
Isn't it funny the things that we can take? Being poisoned on a regular basis, throwing up stuff that doesn't look like it should be in us in the first place, having the engergy of a 90 yr old, having to take cold baths, remember a schedule of pills that fills you up so much you don't have room for food, putting thermometers in the food we do eat to make sure it is good and cold so you don't burn your esophagus, and the myriad of other inconveniences that we go through, but the things that get to us are things that others don't understand.  To them, in light of all we do have to deal with hair is no biggie.  It may not be a big deal if you've never lost yours before but there isn't a woman in the world that wouldn't cry over it.  For you to have gone through it before you should not have to go back through that again.  It is just that kind of "small thing" that can make you lose heart and want to give up.
You can't ever compare one persons pain, loss, situation, with your own.  We all have suffered and we will continue to suffer, but we will suffer together the way we always have.  All of us say stuff like "I shouldn't complain, at least I am still alive". The more I think about that the dumber it sounds.  In RL people don't say that when something crappy happens to them.  You don't get passed over for a raise and say, "oh well, at least I am still alive".  "Oh, you cheated on me honey, that's ok, at least I am still alive".  "You told your mother she could come for 3 weeks without talking to me.  That's ok, at least I'm still alive".  See, that doesn't happen so I don't know why we expect that of ourselves or why others expect us to be so damn grateful we are still alive.  I am to fatiqued to be awfully angry, but I am angry that they haven't found a better way to deal with this.  I am angry that in 30 yrs the death rates for ovarian cancer have not changed one fricking bit.  I would be a lot more grateful that I am still alive if I thought there was some hope that someone out there gave a rat's @ss about us and was trying to do something about the situation.
I am sorry about your hair honey, but maybe you can rent it out to an advertising firm.  They were paying bald guys to do that so why not us?  If people are going to stare anyway...  Maybe one of those hair replacement places would like to hire your head.  You know, if we don't laugh we will cry ourselves into a grave.
Love,
Jan

by Sandymac, Oct 14, 2008 08:09PM
Chris,
    I read your post earlier, but didn't want to rush with my answer. I cannot pretend to know what you and so many others on this forum go through on a regular basis .. I'm not going to get "Pollyannna" on you either. I'd be mad as hell, I'd be frustrated , and a million other emotions. I just wish I had something great to say to you.. I wish I could wave that magic wand and have your eyelashes back for you.( and your hair of course) , I wish I could win the lottery and we could all fly up to see you (well, I'd drive... I hate planes)
    But more than anything tonight, I want to just let you know I am thinking of you, and that's all I can do for you now.. I wish there was more !!  

Much love,
Sandy




by MJIthewriter, Oct 15, 2008 12:23AM
Don't worry about rambling or talking too much. I strongly believe that writing out ones feelings is one of the best ways to handle the repeating never ending loop of overwhelming emotions. There's nothing wrong about feeling. It's alright to cry. Don't feel ashamed to let it all out.  These are your feelings.  My mom used to tell me it's okay to feel. Feelings are neither right nor wrong. They are your feelings.

I would be worried too if I had to lose my hair.  I let my hair grow really long for several years and last year decided to have it cut to shoulder length and donate it to locks of love.

Just remember to pray. I believe there is a God out there that listens to our prayers. He may not take us out of our pain, but he may help us change our thinking about the situation. He gives us the courage and strength to face those challenges. Every person has their own story and their own conflicts.  We can use these conflicts to make us better people, or we can let them defeat us. It's our choice.  Either way, you're okay to feel what you feel. Just keep that faith that there is Someone out there who has a plan for you.


by MJIthewriter, Oct 15, 2008 12:26AM
Just a correction, I felt good to donate my hair and do what I can. I did that because I felt it must feel bad to lose ones hair.

Here is a song that I really like:
http://www.youtube.com/watch?v=MOb8ihacSM4

by crecco, Oct 15, 2008 08:42PM
    All of you are such wonderful friends! And as much as I hate this terrible disease, without it, I would have never known any of you. So I may have been cursed in developing ovarian cancer, but I have been blessed in more ways than I can count.

   lonewolf: thank you, but the only time I ever tried false eyelashes, it looked like I had a caterpiller on my face! I guess with practice they might work, but by the time I would get them on, I would surely be late to where ever it is I would be going.

   Marty, you are so right, none of them would want us to mourn for very long. I guess I can always have the girls draw hair on with a brown marker again, only use a permanent one this time. I did tell them one that I wanted a tattoo of a face on the back of my head and they did not find it funny. Speaking of tattoos, when I got my ovca tattoo, they guy that did it told me he could tattoo on eyebrows if I wanted. I didn't want. Ok as of now, you are officially my adopted mom.

   Laney: thank you also. You are so right. But it is hard to remember when you let yourself get so down. I am glad to know I have so many wonderful people such as you in my corner.

   Gia: yes I did feel a little better after a good nights sleep. And I will keep fighting!

   Sharon: I think that is one of the biggest problems with losing your hair. We do get used to the fact after awhile, but that face looking back in the mirror, is a constant reminder of what we are dealing with. I am glad that I have a place to come to that I can vent like that, and friends who really care and understand.

    Trudie: I think that knowing how hard things can and are going to be, is a lot of what helped to put me in the mood I was in. And I hope that I am able to be there as much for every one else.

    Meg: thank you so much. I hope that you know that I am thinking of you and your mom also and I hope that she is dealing with all of this.

    Ronni: you are right, we will win! After all, look how far we have come! And yes, I really could use another sister as I only have one, and she just does not listen to me as much as I would like. So as of now, you are officially my adopted sister. (I hope the pillows don't have feathers in them)

   Jamianne: just being you and the person that you are is enough. I hope that your mom also is dealing with all of this.

   Lori: your love and support is so strong that I did feel a hug from you. I may have a new mom and sister, but I also have the best friends in the world.

   Marie: I love you too! And you are as great as the posters before you.

   Judy: thank you and I am hoping that it works too, esp if I have to lose my hair because of it. That will really make me mad.

   Jan: I could not look like GI Jane even if I was wearing her undies! Coneheads is a very good description. Now if my stomach could only handle the 6 pack of beer and fried eggs! You are right, the only people that I have ever heard say, "at least I am alive" are those with cancer and sometimes with what we are dealing with, it does sound dumb. And I agree that once we have had to go through the awful experience of losing our hair, we should never have to deal with that again. Hey the advertising firm is a good idea. Do you know where one is?

   Sandy: thinking of me means more than you will ever know. I fI would win the lottery, I would bring us ALL together and you would not have to fly if you didn't want. But you could try waving that magic wand once or twice.

   MJlthewriter: how wonderful to donate your hair! There are many things we must all remember to do and yes, praying is one of them. I will listen to the song. Thank you so much.

   You all mean so much and your words of care and comfort mean even more. Because I know that you mean them and really do care. I love you all for understanding and taking the time to listen to me. I only hope that I can help you all as much as you have helped me.
    Love Chris

by Lafnatitall, Oct 15, 2008 10:17PM
Chris:   It's too  ironic that I was thinking these very things today before I got back to the forum after a long absence.  Sometimes I think, what good could I bring to the forum when I'm so "new" at it all.  I wish I had known the 'regulars' here for longer than I have.  I have come to love what each of you represent to me.  And yes, there IS something quite WRONG for us to have to deal with hair loss, too!  Petty as it may be to others.  I was only in remission for 4 mos before this last recurrence for me.  Taking Etoposide this time around, I thought for sure I would miss out on the hair loss thing...but, NOOOOOOO...here we go again!  

I hadn't thought about the advertising thing but that sounds like a great idea...gives a bald woman some purpose!  What I DID want to do once is tatoo a 'nipple' on the back of my head with the phrase underneath it stating, " Cancer S*U*C*K*S".  What do you think the numbers increase in whiplash injuries would be on that day?  Kathy, aka Survivor Susie, sent me a T-Shirt with the words on it: "Does This Shirt Make Me Look Bald?"

Wish I could meet all of you...hold and hug you...laugh and cry with you...and most of all...be bald with you.

Rhonda





by crecco, Oct 15, 2008 10:41PM
Rhonda,
   My feelings exactly. So you are on Etoposide too. Is it the oral or IV? I am on oral. and my dosage was 100mg per day for 21 days and then 7 days off. But due to a lowering white count it has been changed to 100mg one day and 50 mg the next, for 21 days and 7 days off. So your hair has come out too? How long did it take? I was so hoping to not have to deal with it again as it has just started coming back in from losing it in Feb. It is finally between 2 and 3 inches long. But it looks as though I am going to spend yet another winter bald. (it is so cold!) I wish I could meet you too!
   Love Chris

by PinkTissue, Oct 16, 2008 01:53AM
Pls do take good care of yourself

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