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round 5 started yesterday

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

ahhh - and the feet and fingers were well on their way just at the sight of the ox! It is just so cold here, but then I think of another post - something about having to go through this in the summer, when you really want ice in your water - and wow - i'll take the cold. but even room temp drinks are getting me now, so its all hot chocolate and tea. Make sure to drink cold milk the day before tho..

I'm having real problems with my eyes tho - learned a lesson - do NOT change into new contacts! although only painful for a few minutes, it hurt! when you go out in the cold, make sure the eyes are dry - mine keep freezing and I can't see - freaky and scary. my face does all sorts of contortionistic things, lips go into pucker mode and can't get them out, must look funny to other people.

I was wide awake and reading the forums here at midnight. damn steroids, and I was so tired from spending the day at the hospital, doing nothing. up at 6am and at work at 7. major headache, and actually got a bit nauseous today, maybe the lack of food, but it's all so nasty. I lost 30 lbs with surgery, and have lost about 15 more since. I needed to loose weight, but would not recommend this diet.

Pump is out tomorrow afternoon, guess I will crash hard by 5pm. seem to be tired sooner and crashing longer now, don't like not feeling like myself. It's hard to believe that I miss cleaning out the fridge but i do. i miss living downstairs and the rest of the house - but it's so cold down there even when it's warm.

went to breakfast and the movies last saturday morning, thank goodness for all the previews - spent the whole time in the bathroom. spoke to the onc about it, he told me to keep a poop log for the next visit, and that i am probably not taking enough immodiun, but would write me a script for lomotil next time if i feel i need it. Now what I need is money to buy new underwear....and the will power to go to the store.

It's very hard to not be depressed. I miss the old party me. I hate asking for help. I hate all of this. then I come here and read stories, and I know I'm not alone, and there are so many worse off than me that I feel guitly feeling the way i feel. at least can still go to work even if it is half days (well, I throw a few 10 hour days in when I feel up to it). I've read up on radiation, and thank goodness I didn't have to do that. I'm still scared that even though they say they got it all, that i will go through this, and since they didn't do a full colonoscopy, I have to have another one for the rest, so what if they find something else? even though the PET scan said all was fine - what if? They did pluck out polyps too aside from the tumor, and they were benign, but still the thought will always be back there. Doc is pretty confident that I can have the port removed as soon as the chemo is done, and I want it out - its buggy and itchy.

oh yeah - monday went to get the script for the emla cream - stood there at target going through my purse, which i had cleaned out at work, which is why i remembered i had to get that filled before chemo the next morning - couldn't find it - stood there and cried, cause i knew I had it, and I knew I needed it. looked and felt completely stupid. so, went through the poke without it. told doc - he called it in for me so i won't have to worry about finding the paper. and reminded me that if that were to happen again ever - just have them call his office - duh....

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

ahhh kiddo but look at your number. You are on number 5 and that is a good thing....movin on movin on. Just concentrate on this now and trust that the PET would have picked something else up.

Sorry your hands and feet are cold.....how cold is there???? Tonight here it is minus 17 and I start my first oxy in the morning.....I hope you will help me....just think of all the experience you can share. Why do you drink cold milk the day before?

Hang in and be an oxy buddy???/
\
best hugs,
Maggie

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

ahhh kiddo but look at your number. You are on number 5 and that is a good thing....movin on movin on. Just concentrate on this now and trust that the PET would have picked something else up.

Sorry your hands and feet are cold.....how cold is there???? Tonight here it is minus 17 and I start my first oxy in the morning.....I hope you will help me....just think of all the experience you can share. Why do you drink cold milk the day before?

Hang in and be an oxy buddy???/
\
best hugs,
Maggie

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

Well, it was only minus 5 here yesterday, minus simething else the day before - windchills, yuck. (windchills of minus 50 last week?) I hate minnesota, but as I said after reading someone elses post about not being able to drink cold anything in the summer, i guess it could be worse. oh, cold milk is my favorite and I tend to miss that the most, and for about a week or more it's impossible. But usually a day or 2 before I get stuck with my buddy I can handle it - so that's why the milk. I never drank much soda either, but sometimes now I grab an ice cold can of pepsi.

Mag - the oxy sucks, not gonna lie on that one - but it could be a whole lot worse. I'll be glad to be your oxy buddy. After reading my post, I think I tend to whine more when I'm so tired. There are plenty of good days, once this thing comes out today I will probably be asleep from 5 or 6 until tomorrow, go to work and sleep tomorrow night too. By saturday I'll be ready to do something fun, just not a long day, and next weekend will be ready to have some real fun before it starts again, that's how it seems to go.

question for anyone tho - last time around (#4) my hands itched like crazy. last night and this morning I feel more like I have a yeast infection - I know I don't, but does this stuff cause uncontrollable itching too? any ideas? gonna ask the nurses today, but gosh, this is awful...

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I know it doesn't feel like it, but you are! Your post reminded me of some of the days when I just wasn't happy about anything! Everything was going wrong and darn it I was TIRED of the inside of my bathroom walls! Luckily I am blogging on a CaringBridge site so I can read my posts and remember that even after the bad days I had good days! And to read the comments from my friends and family helps also! One late night trek to get a peanut butter sandwich turned out to be an event that still makes me laugh! And I hear you on the weight loss thing! Nobody wants to lose weight this way! This too shall pass, I am praying for you.
mary

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

I was on that site for while, not for myself, but my gf's son had had a bone marrow transplant, he was 12 and had been fighting leukemia since he was 4. He finally lost his battle August 17th and is now among the many angels. I haven't been back to the site since. Instead, I have taken to writing each experience in an email and sending it to my family and friends, that seems to work. I was surprised how many were interested, not to mention an uncle that decided he should get the colonoscopy, and my mother who FINALLY decided may she should get her mammogram - she is 67 and never had one.

I'd love to hear about the peanut butter sandwich - bet I can relate!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

My caringbridge site is www.caringbridge.org/visit/marysjourney. If you go to the journal, on page 10, you will find an entry dated Friday, March 14th at 6:05am. :)
mary

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jenben59
Posts: 144
Joined: Jan 2009

I wish you were one of those people who have very few side effects and get through chemo like it's nothing much. Do you live in a very cold climate? Are you allowed to use heating pads or electric blankets? I was touched by what you wrote, because it's reality. When I go to the doctor's they tell me about side effects, but they don't talk about how severe and constricting they can become. I'd rather know up front and prepare the best I can for the effects than find out as it happens. I'm curious,why are you on steroids? Does it help with the pain? I hope you get to feeling better soon. I'm thinking of you and wishing you calm days.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Told me she will not put me on Oxalpilatin in the winters, she doesn't like doing that to any of her patients, so she will be putting me on 5-FU, Irinotecran and Leucovorin once every other week... doed this sound normal? I have to go every other Monday to the tower there at the OSU Reasearch (The James) and the first day I'm going to be sitting there for 5 hours..and continue carrying the fanny pack at home...I hope this cocktail seems good, and now worried about how to change, shower and sleep with that pack on???

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I was on that for 2 cycles and I tolerated it much better than the FOLFOX (oxaliplatin). There was an issue with diarrhea, but be sure to let your doctors/nurses know if you have ANY issues cause they TOTALLY have drugs to counteract them! Sandostatin shots helped me with the diarrhea greatly!
mary

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Thanks Mary, I'll be sure to ask them about that...god, I hate being in the middle of something and the crap just hits you like that..bleck!

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

I was worried about that also - i have learned that it's no big deal - take a shower before you go, and then after it comes out. in between a wash cloth works fine, or a bath, as long as the site doesn't get wet, or the pack. changing is a trick not getting tangled between the bra and the iv tube, but not hard. Sleeping, well, I sleep on my stomach and use a pillow to keep the port from the bed, and the pack under the pillow, with just enough of the tube pulled out. Lucky you, and you're in ohio, and a doc not giving patients the ox! for those of us in canada and minnesota, i think the docs think we're tough - but hey, I moved her from Florida, not tough at all!! good luck and best wishes.

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

I live in minnesota. born and raised in philly, lived in st pete fla for 16 years then moved here for a guy! can't handle heating pads or blankets - I am hot all the time - just my hands and feet - it's a pain in the you know what - I'm also going through the menopause thing, and am hot most of the time. so I have to bundle up to get to the car, and once in start taking things off!

I don't think the doctors actually "know" every side effect, and everyone is different and feels the things in varying degrees. I seem to have been hit with almost everyone, but none that bad. my doc said I must be the 1%.

The steroid is part of the premed thing with the anti nausea med - apparently helps things go through? I actually forget why - just wish I could have something like that on a good day so I could get the cleaning done!

By the way - as far as the itching - I started taking zyrtec before I go to bed - it helps completely with the itching, as well as no stuffy nose in the morning.

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Dear Daydreamer: you poor thing.....having to experience every single side effect....what a bummer. I thought I would go for a nice little walk today because the temp was up to about 28 degrees and the sun was out.....wham came around the corner of a building, hit by a cold wind and I could feel my eyes go. I thought of YOU....standing there thinking ok don't panic, managed to make it home but man is that a strange feeling huh??? It really was as if they were freezing up.

So glad you are gettting the itching sorted out....I am going to start writing down your suggestions as I follow along.

Cheers from the cold north
Mags

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

The first 2 times really freaked me out, until I got an answer here, then spoke to the doc about it. not so bad anymore, just learned to make sure my eyes are dry before I walk out the door! Just a reminder, I haven't had anything bad, just all of them a little bit!

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