The Chemosabe March Cruise

Hey, cruisers!

I was writing a long post last night and kept getting interrupted, and, yep, I lost it.

Summary -- Welcome to the new cruisers, sorry to hear about those having a tough time with SEs, glad to hear about those who are recovering.

Angel -- A special note to you since you've had such a rough time. I hope yogurt proves to be the miracle cure.

Taurie -- You're the cruise director -- you can't leave! Besides, most of us will be only 1 or 2 tx's ahead of you.

I stayed home from work today because I was tired and last night I had a killer headache that ruined my sleep. I suppose it could have been from the Neulasta last Friday, but it gave every sign of being one of my typical migraines.

I was doing fine with my mouth until I drank a new brand of apple juice without noticing that it had added Vitamin C -- aka, citric ACID -- so now my tongue is burning again. Not as bad as last time, though.

I wore my wig to work Monday and Tuesday, and it was a hit. I may have to change my hairstyle whenever it comes back. Day 20 and my hair still hasn't come out in clumps, but it's falling out from every place, and every place is slightly itchy.

Hi March cruisers -- I'm from the Feb cruise just checking in. I found that I got the big "D" after using senokot-S. Once I switched to colace, a stool softener, I was OK. I do need to take colace twice a day, but it seems to work. Just a suggestion to use maybe in addition to the yohgurt.

Good luck!

-- Hillary

Hi all! Today was day 14, counts were good and 2nd round of taxol proceeded as planned. Hair is starting to fall out, but I'm hoping I can make it to the weekend before shaving it off. I'm thoroughly exhausted, but can't sleep because of the 20 MG of IV decadron included in my premeds. It took 3 sticks to place an IV and I have great veins! I think they get nervous because I'm an RN. I'm not looking forward to the neulasta injection tomorrow -- I had horrible bone pain in my pelvis the last time, add that to the joint pain from the taxol, and it wasn't much fun.

Welcome new cruisers! Sybil, if your rash is yeast, diaper cream will not help - you could try over the counter Lotrimin cream and may get better results, but check with your onc first.

Angel, so glad to hear you're doing better. Flagyl is the drug of choice for C-diff. For everyone using yogurt to help with the big D - read the label. The yogurt needs to contain active cultures. Many of the blended, fruity brands do not have them and will not be much help.

Taurie - Stay on Board!! Would miss you too much if you jumped ship!

Hugs, prayers, and peace to everyone....

Thanks for the well wishes ladies. I still have not been plagued again and I'm happy as a lark.


Sorry to hear about the white blood cell counts on some of you.
When the white cells are down what do they do? I know I do the Neulasta the day after chemo but if they drop after that what happens next; have they told you?

Nancy,
I too started shedding today. I need to wash my hair tonight and I'm kind of afraid of it going down the drain if ya know what I mean. If you're not already using it pick up a wig cap. That might keep the wig from itching the scalp so much.

Misk,
Take care of you and get plenty of rest hun. We can't afford to loose you to the infirmary on this cruise. In fact I think we should close it down permanently.

Holly,
I know what you mean and I can sure relate. It was only 9 days for me but the 'd' kicked my butt. Try the yogurt thing and like Marshabel said the starchy mashed potatoes seem to help as well but I'm sure you've probably tried all of it like me anyway. Sending you a truck of cotton soft toilet paper......lol Try a protein shake now and then to help keep your strength up as well. Also make sure you drink some pedialite or equivelant to help keep up your electrolytes.

Zig,
Good point on the active cultures in the Yogurt. Hubby bought me about 6 different kinds because he didn't know which one I wanted. I'm off to read the labels and see which ones I can still use. So glad you mentioned that because I didn't know that some didn't have the active cultures.

I've been having a runny nose for 2 days now. Thought it was from my allergies but the hubby reminded me about not having any nose hairs. I had forgot about that. Sure hope it won't be dripping like this all the time. I did put a little vaseline in it and that seemed to help a lot.

Have a friend having a baby boy so started a new Layette Set for her this evening. It will give me something to do with my hands for a while till I'm off to the next project or side effect unfortunately.

Wishing you all better health and good days ladies.
Love,
Angel

I'm so glad to hear so many are doing better. Please, Lord, give strength to those who are struggling.

Holly - you need to let yourself get some extra rest and not PUSH yourself to get to the job. Hope your tummy stabilizes soon.
terri - you, too. Sorry your bootay is botherin'. I found generic, unscented babywipes helped my soreness. And A&D ointment helped healing. Gosh, I sound like I've had babies around lately - and she's 22!
GrammyNancy - you and I started the same treatment on the same day - and we seem to be having some of the same challenges. It's such a blessing to have this thread!
maxgirl - glad you have a good wig! How cool that everyone thought it was you, only better!
lindadk - I am so impressed that you have any hair at all at day 21. Mine started seriously shedding on Day #14. I was going to shave it the evening of #15 because my sweet young'un came to visit/help. But I'm an on'ry cuss and I have held onto a good bit of it simply because I want to go in for my onc. appointment tomorrow with hair, just so I can say "Neener neener" to my doc who told me "Day 14-17, no negotiating, it'll be gone". Of course, all he will have to do is point out that tomorrow is Day #17. Anyway, I am fortunate to have begun with enough hair for two people, so I can have lost half of it and still be okay.
marshabel - if you feel like going out - GO OUT! Just don't go near any humans. Really, a Springtime walk around the neighborhood can do worlds of good.
zigzag - Good on ya for the solid blood counts at day 14! The idea of three sticks for the IV made me cringe - and be happy for my medi-port. Are your 'great veins' going to be up for the duration? I'm sorry, but I don't remember what you are dong after the taxol. What are you finding helps with the bone pain? Anyone? I'm doing the Neupogen, not the Neulasta - but the Taxotere, like Taxol, causes joint pain on top of it - and mine was in pelvis and spine, too. Fortunately only for a few days.
Angel - such a relief to have you back! Onward with strength! Maybe now that you are feeling better we'll get another one of those hilarious photo-collages? Maybe about your new chemo-knowledge?
MisShapen - ain't it a bitc# about not being able to be around people? I had a brief trip to San Francisco planned to visit my sister (and the SF Garden Show) but she called at the last minute to say one of her toddler-mom friends had given her a case of the sniffles and coughs. Phooey! I don't think I'd get anything (my 101.6 temp was a week ago) but it would be foolish to risk it, I guess. My MD never said anything about taking a temp. every 4 hours. Is that for the whole time or just this week? They did give me a digital thermometer, though. hmmmm

I'm wearing a hair net to bed tonight (I feel like such a granny!) 'cause i don't want to clean up shedding off my pillowcase. I have the feeling tomorrow night is clipper night. Why is this bothering me so? I am NOT a hat-wearer and will just have to get over that, I guess.

I know that tomorrow is Day#1 for some of our Chemosabe sisters - 1stlite (charlie) and fireba (Sara). Our thoughts and prayers are with you!{{{hugs}}

And there are so many we haven't heard from (or I have missed) - whitecotton (Melissa), pmarsh34, Barb's husband, musicmom3 and several others. Please let us know how you are doing. Our cruise needs all of you!

Nighty-nite!
Lisa

Angel, so glad your feeling better. Hope everyone who's been yucky has a better day today. I don't get the Neulasta shots, the Onc said my counts should rebound on there own since my cruises are every 21 days.

My hair actually hurts!! My hairdresser gave me a GI Jane cut earlier this month, so I thought I'd get through the hair loss with no pain. Oh no, even though my hair is 1/2 long it still hurts! I took a lint roller brush to my head last night and a LOT came out. Felt kinda wierd rolling my head with a lint roller but it works!

Here I go for round #2 today. Needless to say I'm as nervous as I was for the first round. I'm feeling good now, I don't want to be sick again!! Maybe I'll take half of a avitan before I go to help take the edge off.

Hate this stuff we're all going thru.

Linda

Hey Lisa,
The temp every four hours is part of the instructions for caring for yourself during Low White Blood Cell Count. I can actually tell if I have a fever and I've been okay. I did wake up with a sore throat, though.

Your hairnet idea is a good one. I like the relationship you have with you onc, to go in and tease about your hair. We may as well have fun.

On the day of my mastectomy, I drew a smiley face on my boobie, so when they undraped me in the OR everyone got a good laugh.

Teri, thanks for the advice of taking Aleve BEFORE my Neulasta and continuing. I am definitely trying that next time. I hope your hinny is better.

Linda, I actually feel pretty good even though my counts are down. Go figure.

My thoughts are with you all who are struggling and just know better days lie ahead.

Miss S

Good Morning!

JacqueN, my onc suggested the "BRAT" diet when I was experiencing the big bad D. The only thing that even appealed to me was eggs, so I ate scrambled eggs and toast for 3 days plus Dannon Activia yogurt.

This hair thing is a mess. I went clothes shopping yesterday and after pulling things on and off over my head there was hair flying everywhere. I bet whoever went in the dressing room after me must have thought there had been a cat fight in there. Oh well...I did find some nice bright things to wear that made me feel better.

MissS...I love your boob smiley face..wish I had thought of that one. My surgeon (who was wonderful) was a short little geeky guy with a bow tie...I told everyone that the reason I thought he became a breast surgeon was that was the only way he would ever be able to see a woman's breast.

I sure hope today will be a better day for everyone...with no runs to the bathroom, no sore bottoms, no headaches.

Nancy

Hi all - checking in today before treatment #3 this afternoon. I have been feeling pretty good, but as always I feel pretty down right before treatment. You all know - I'm just not looking forward to feeling bad again. I also keep up with the Feb. group since they are just ahead of me, and AC#3 seems to have been a rough one for quite a few. So I am bracing myself and hoping that it won't be too tough on me. I am taking off on Mon. and Tues. as recommended by my onc. to get some rest.

Regarding the hair thing, when mine starting hurting and excessively shedding, I got it buzzed down really low and my scalp felt much better. Most of my remaining hair "stubble" has now fallen out. I have been wearing my wig at work for over a week now, and those who noticed like my "new hair style."

Well, I will try to check in over the weekend to let you all know how it's going.

Steph

Glad you ladies mentioned this morning about the head hurting with the hair loss. Mine started last night and I hadn't heard that one before. I was going to ask about it this morning and here you are with my answers already. For those of you who have already lost all your hair does it continue after it's gone or just while it's shedding?

As far as the dairy products during "d" I was told to avoid them like the plague. Never saw the Brat diet but everything that was mentioned from it above I was told to try so it must be a good one. Unfortunately none of it worked for me except the mashed potatoes temporarily and then the yogurt.

I'm passing tons of gas. In fact if you attached a sail to me I think I could sail this whole cruise ship around the world and back. Hubby suggested I get some gas-x yesterday and I told him he was nuts. I don't want to build that up inside of me......let it rip I say!!!!!!

Lisa,
I'll work on another collage for us. Just have to come up with some clever ideas first....hehehe

What's everyone working on besides our side effects and chemo? I mean any home projects or sewing, crocheting etc. Maybe we can talk about some of that stuff and get our minds out of the toilets for a while......lol

onlygirl,
Will be thinking of you today and praying you have an uneventful chemo day.

Love to all,
Angel

Angelflight - thanks for that great collage! You hit the nail on the head!

Hey girls - I always used the BRAT diet for the big D, too, only the R was for RICE, not raisins! Wouldn't raisins have the opposite effect?

Good luck to all of you that are bellyin up to the bar for the first time or going in for round 2 or 3. My thoughts are with ya....

Marshabel
Currently under house arrest

Marshabel - it is indeed Rice (and Bananas, Applesauce & Toast) that makes up the anti-D BRAT diet. Raisins just might be a little risky - but I guess it would have to be a lot of them!
Angel - great collage! You give us all something to smile about. My current projects are mostly in my garden. And I have to be very careful and wear my gloves (I'm usually a bare hands-on gardener). I still mamaged a few rose thorn sticks yesterday, but all except one were on my 'good' side. I'm also entertaining the possibility of staining my new cedar fence (it's 76 out today) - I'd rather hire a couple of guys, but me not working makes that a little difficult. Probably a little overly ambitious, though!
onlygirl4 - hon, don't worry in advance about the SE you may or may not have. Do everything you can to prevent them before they start and just persevere. For myself, the esophageal irritation, tummy upset, etc. was mostly in the first week. I spiked a fever once and it was gone. Other than that, I've been doing pretty dang okay - and my MD says I'm taking the most toxic regimen out there. Not sleeping, but that's not all that unusual for me. We're going to try a new aid for that, starting tonight, too. Go in thinking STRONG and you'll do fine tomorrow.
GrammyNancy - the catfight comment made me smile. This hair flying everywhere is a nuisance, isn't it!? but I've still got lots left. (okay, well, maybe not lots, but enough). I trotted on in to my MD appointment this morning with just having spray-gel and scrunched it some (a blow out and brushing is not a good idea right now)
musicmom- I am amazed at your activity level! Even your 'errand day' today sounds mighty busy. How nice that one of your co-workers noticed your need for extra comfort.
MissShapen - hope that sore throat went away!

My scalp is giving me itchy pain, too - Day #17 today and I'd love to be able to wear hair to church on Sunday. This also may be overly ambitious! I've got my lint roller at the ready. Thanks for the reminder about that, lindadk. Hope you are finding it an easy day for your infusion today. Rest and drink and let us know how you are.
steph - I can't believe you are up for #3 today. That dose-dense is a bear. I'm glad to hear your oncologist insisted on your taking a loooong weekend to rest.
Maliha - good thoughts for your mom, too. You are a sweet, strong daughter to be her support through this.{{hugs}}
Going to go bathe and groom the dog. That's my project for this afternoon.

Lisa

onlygirl4 -- SEVEN AND A HALF HOURS? wow. that is one dang long chemo, girl. let us know how u do. i bet u will rock! bring some comedy CDs to listen to on your cd player to keep u laughing. i had garrison keillor's Prairie Home Companion Joke Show CDs with me. DH kept shushing me cuz i was laughing so loud. (example: why don't workers in Iowa get coffee breaks? Because it takes to long to re-train them after they get back...)
i am so amazed by y'all. today is one week since my first tx, and i have accomplished very little due to crushing fatigue and the big D. i got the oil changed in my car yesterday. that was about it.
y'all are a bunch of amazing women, and stronger than this stupid disease!
i am thinking about those of u we haven't heard from in a while. i haven't updated the list -- may wait for any last-minute gals, but i know we haven't heard from all 35 cruisers in the past week. let us know how y'all are doing -- we are in this together, and God is with us all, holding our hands. We will get through this and be stronger than before.

Okay, got infusion one out of the way! Went very well. Great nurse, she believes in slower is better. She feels her patients are walking out of there better. No headache. So, this is over and now lets see what other surprises may lie out there. An adventure. Cool. I hope this adventure is gentle!

Playwriter - That's what they told me. They want me there by 8am tomorrow and it takes me about 1 1/2 hours to get there. I had to make special arrangements for my 7 year old to get to school in the morning so I was trying to get the time changed to at least 8:30. They said no because the treatment was going to be so long. I'll let you know how long it really takes.

Beth