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Another day in Cancerville

damama24
Posts: 175
Joined: Nov 2009

I have been following the many posts lately of loss and hope and feeling very conflicted. I'm not a regular poster but do try to read daily. I just never know what to say so i tend to keep my mouth shut. When I read of another's passing I can't help but think, one day soon that will be me. You are all so carring and supportive of each other it sometimes gives me a boost just to read all your supportive words even if not directed at me.
I recently took a four week break from chemo and it was wonderful. But, during that break my CEA shot up like a ballon. I started back on chemo last week and hopefully the CEA will drop again. I knew taking this break would see my CEA go up,but seeing it on paper just made me realize that while chemo helps keep my cancer in check it also means no end to chemo. I'm sorry to ramble on with really nothing productive to say just feeling sorry for myself. I feel that this stop in Cancerville for me will be permante with no time off for good behavior.
Wishing you all a healthier 2011.
Deb

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CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Rambling?? Girlfriend, I'm going to have to take you under my wing because if that note of yours was rambling, you've got a lot of learning to do on how to post a rambling note here on the boards . I'm the queen of ramble! Why, I can take something that could be said in one or two sentences and stretch it out to the length of a small book!! LOL!!

Now :::putting on Support Cop hat::: you have violated a non-verbal rule here on the boards ;) NO ONE is allowed to go on this cancer journey alone by sitting off to the side and watching everyone else support each other. No siree, Bob! We don't allow that :D You must jump right in, with both feet and become one of the crowd. The nice thing about this support board, is you don't have to dress up and put on makeup (although, don't tell anyone, but I have full war makeup on because I'm trying to head out of the apartment to get some errands like grocery shopping, trip to the drugstore, etc. done before I go to the hospital tomorrow to get my port-a-cath inserted). I figure, if it's anything like the last time, my arm will not be useable for about a week... so better get the groceries and stuff done so I can have a lazy week ahead of me.

Now, where was I? Oh yes... YOU!! Please, please, please don't go back to hiding in the woodwork where we can't see or hear you. Even if you feel you have nothing to contribute to a discussion (you might surprise yourself and realize you have a lot to contribute)... then start a new thread/topic where you just ask a question like, "Soooo, what is everyone going to do for themselves this week?" or "I need suggestions... every now and then I get the blues and start worrying about when my time is going to be up. What do you all do to prevent that or cope with it?" It can be a question about anything -- "Does anyone have a recipe for Hot Fudge Brownies?" and I can guarantee you there will be those who will jump in with answers or opinions. You may think those are stupid questions that aren't relevant to all the other topics on the board, but trust me, EVERY question is relevant. And although the majority of the topics are about something heavy or serious or medical, it's always refreshing to find out people do things other than just treatments, treatments, treatments.

There you go... not THIS is a rambling message :) And I could have rambled more but I have to head out now. So welcome aboard... and don't be shy anymore!! I need co-ramblers to back up my ramblings :D

Cheryl
From the West Coast of Canada - Vancouver

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

ramble.....why we just love to ramble and cheryl is one of the very best.....:) :) :)

why her response to you today would not even count as a ramble.....just kidding.....

welcome Deb...do not hesitate....do not be shy....we are here for one another and that includes YOU!

as pepe would say....have a hug.....

mags

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hehehe Mags.... I done good, no?? I mean, that was one of my more short and concise rambling notes. Poor Deb... wait until she asks a question where I think I know the answer!!! HAHAHA!! Well, the good thing about this Support Board is we never seem to run out of paper... er... cyber space :D

Ramble Queen :D

AnneCan
Posts: 3692
Joined: Oct 2009

Come join us more often! It is amazing how helpful this forum is but also how good it feels to help someone, even the tiniest bit! No one knows for sure if they will be on chemo "forever". I go week to week, scan to scan, looking for a pot of gold at the end of my rainbow.

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

Hey Deb,
I posted recently having very similar feelings about not knowing what to say and just feeling depressed about what's going on. This is hard! I'll back off now and then and just read for awhile, and then jump back in and it really does help to talk and vent and just get some loving feedback from folks who know what you're going through. I'm glad you posted Deb. Keep jumping in now:-)
(hugs)
April

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Deb.

I'm glad you posted. I know all this is hard to manage. So much emotion goes along with this mess! Please post more often, so we can help you deal, okay?

*hugs*
Gail

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I am sure that you realize that while you are in Cancerville you are in a situation that you are stable, and that being stable gives you time to hopefully not stay on chemo the rest of your life, but it affords you the luxury of sticking around long enough to see a turn in cancer treatment regimens that will allow you to get off chemo indefinitely. At the very least that is a hope that is obtainable in our lifetimes...We may actually be given the opportunity to be one of the first ones to reach life without maintenance chemo. So actually we're not as Jimmy Buffet says "Wasting away in Cancerville" or something like that, we are actually waiting at the dock until our ship comes in.....and even though chemo takes it out of us, its still keeping us in the game, and thats what we have to remember, we're still in the game.....find a trashcan, make sure its plastic, and take it out in the backyard and kick the dogcrap out of it........works very well at taking out frustrations, and its also easy on the feet...do that one time, then come back in and tell me how it makes ya feel.....Love and Hope for all of us..Buzz

AnneCan
Posts: 3692
Joined: Oct 2009

I like that; waiting at the dock till our ship comes in.

damama24
Posts: 175
Joined: Nov 2009

Thank you all so much for your kind words. I will make an effort to participate more. I try to stay positive and take things as they come and deal but some days. Buzz kicking that trashcan sounds like a good idea once all the snow in the backyard melts.
I think what is really starting to get to me is that I'm not sure where treatment will be going in the near future. When dx'd in August of 09 I started on Folfox,onc planned on 12 rounds with the oxi and then 14 rounds without the oxi. Started on Sept 02 of 09,but after 6 rounds of the Folfox the neuropathy got so bad I was unable to walk and legs and feet were completely numb.Even reducing the dosage and getting the calcium and mag along with the oxi didn't help,so stopped the oxi after 6 rounds and stayed on the rest of the Folfox regime plus avastin for 7 more rounds when scans showed progression of tumors and my CEA shot up to over 9000. Onc ordered a 3 week break and I started on Iriontecan and Vectibix.Last wednesday I had my 19th round of that and have 7 more scheduled. During this whole time my Cea has dropped but never into the normal range. I have seen two surgeons and both consider me inoperable because of distant lymph node involvement. The iriontecan and vectibix has been so much easier for me to handle than the folfox was(except for losing my hair) that staying on it doesn't bother me to much. But I often feel like I'm just drifting through my days. I lost my job while on folfox because it affected me so badly and went on SSDI. Thats the kicker for me,I don't know what to do with myself.I never really had friends since high school I was always a workaholic,no hobbies and unfortunately a very short attention span.I'm a brat and get bored with things quickly. I tried doing the homemaker thing but absolutley hate that stuff. I do love to read and have read more books in the last 18 months than I can remember.I'm sorry if I sound whiney and shallow but I expected to work every day of my life and never retire,so this has been hard. The way things are now my hubby will probably never be able to retire. I feel like I just screwed him over because I got cancer. Believe me he has been wonderful and my kids have all been there for me and help in any way they can, but the guilt is still there.
This has been a little rambling and probably had more info than anyone wanted but I hope you can understand a little of how I feel somedays. Everyone handles things differently and I tend to get down on myself for putting my family through all this. I know I didn't ask for cancer but I'm the one with it and my family didn't deserve it. OK enough feeling sorry for myself tomorrow is another day.
Cheryl I wanted you to know that i love reading your posts and you my dear lady are definately a hoot. Hoping all goes well with your port placement and that you keep your hair.

Deb

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Now there you go... I'm starting to get a picture of the real Deb.... and she looks like she's going to fit right in here with the rest of the motley crew ;D :D

Totally understand that you are feeling out of sorts now that you aren't working, yet don't have any hobbies or things to get you out of the house. That has got to be a huge shock to the system!! I remember when I first was off work, I was on sick leave, but always thought that I would return to work. Then I went on LTD, but still thought I would end up going back to work once everything was stable and under control. Meanwhile, I felt guilty because although I was on treatment, I felt fine... so got more and more involved in my theatre hobby... to the point I thought, "I don't have TIME to go back to work!" LOL! But still, I did feel guilty that I could put all these hours in at the theatre but not go back to work. Soooo, I took early retirement last February... and have LOVED being retired!! I do my theatre hobby... both at the theatre and from home. I'm the publicist of one theatre company so do a lot of that work here on my computer. I LOVE it!! For instance, if I have to hang around the apartment for the next week after tomorrow's procedure, I have tons of "work" to keep me busy, even though it's all volunteer.

Meanwhile, you say you love to read.... me too!!! I just need a 36 hour day, but when I do get time, I love it!! And one of my favourite guilty pleasures is to go spend a few hours at a bookstore. Pure heaven!! Of course, no, I never walk out with just one or two books... more like 5 or 6!! I currently have 34 new books to read . So if it were to monsoon or we got a huge dump of snow and I couldn't leave the apartment... no problem :D

WOW... do we ever have something in common... that nasty Oxi !!! I had the same reaction.. the neuropathy in my lower legs and feet was horrible!! I managed to hang in for 10 sessions... but by then it was so bad it permanently damaged my legs and feet. Statistics say that when you are affected by it, the neuropathy will eventually go away once you stop taking it. I think that's for most people. For a small percentage, it remains permanent.... guess who fell in the small percentage of people?? So my dancing days are over.... but now that I think of it, I never was a dancer anyways :D But I DO miss walking all over the neighbourhood with my little schnauzer, Bridget. She used to come everywhere with me and if I was going to be doing stuff within a 3 mile radius, the two of us would walk everywhere. Now it's a good day if I can walk one block over to the next street. Lucky for me and Bridget, we have wonderful neighbours in this building and Toby comes and gets Bridget twice/day to take her on long walks... and I take her out at 10pm, just to the back lane, before she goes to bed.

But oh, how I can relate with you about the oxi problems!! So now you are on Irinotecan and Vectibix. Again, we are similar. I will be starting the Irinotecan on Feb 7... and if that doesn't do the trick, I think we'll be adding either Eritibux or Vectibix... but for now, it will be the Irinotecan, a 90 min infusion every 3 weeks. How often do you get yours? I figure it will be the Irinotecan that will make me lose my hair... but now, I don't care. I saw two of the most fabulous wigs at the "Look Good, Feel Better" workshop for women with cancer that I went to this week and I MUST HAVE THEM!! If I lose my hair, I can justify to myself buying them.... if I don't lose my hair, I think I have to buy them anyways and justify it by saying, "I'M SO VAIN... I BET YOU THOUGHT THIS SONG WAS ABOUT YOU!" :D

Ok... by rambling friend!! I must go and put away the last of the groceries... have a little diet coke since I have to stop all eating and drinking in the next 1 1/2 hours... and maybe I'll just forget about the computer work and the dog and I will go to bed and read!! :D

Over and out...

Cheryl

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Deb,
It is good to have you posting and being part of the group. We really are here for everyone and we want to support you.

Cheryl, you always make me smile. :)

Aloha,
Kathleen

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Deb,

I can completely relate to your situation right now. I recently enjoyed a short two week chemo break and my CEA shot up too. Then I went back to the chemo and it dropped a little, but then the next round it went up again, even while on it.
What's next? Who knows... yes, it can be scary, but let's keep the faith and keep supporting each other here.
You take care, girl & I'll be praying for you- is that ok? We're in this together.

Hugs,
Lisa

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