April/May 2012 Chemo hang out

Melrosemelrose

Gabsbaba- You are in the big girl recliner today!!!  Keep calm and at peace today--- you will do fine. 

Wishing minimal side effects for everyone!!!

mary71145329

CityFi- Love the idea of a bear named Kimo! So clever!

vballmom-hope you're doing okay post-1st infusion!

Stacie-Enjoy your vaca--sun and beach sounds wonderful! BTW, I bought the same hat from TLC. So soft and cute!

Fightinglikeagirl, dancetrancer, husker123 and anyone I missed---today is your day in the big chair. Prayers and wishes for an uneventful day and minimal se's!

Hugs to all!

IndigoMont11

I have two wigs - slightly different styles and colors.  When I first put them on, I get this kind of startled feeling looking at myself - then after I brush them into place, I've enjoyed wearing them and they do make me feel pretty.  I live in the city and I've worn them out of the house to go shopping, into my office, and when I don't feel like dealing with other people's reactions - you know, double takes, no eye contact.  (I think those reactions are normal, just that I don't always feel like being on the receiving end).  However, for comfort's sake, I usually wear either one of my head buffs/wraps or no cover at all around the house.  I looked at scarves but they look like too much work to tie - I was never very good at wearing the fashion neck scarves as far as all the different ways to tie them - and the look isn't me, anyway.  And I've never been a hat person in the sense of the wide-brimmed Kentucky Derby style hats, but I do like some of the caps out there, like those newsboy caps.  I've been thinking about buying some of those.  I have a baseball cap, too, that I wear to go walking in. 

ahdjdbcjdjdbkf

The only headwear I have found that I like are pretied scarves and turbans. I'm not skilled tying scarves and it is hard to get them to stay put so the pretied ones work great for me. I went out to dinner last night in an aqua one and I felt good in it. But I don't like my caps. :-) I'm glad there are a lot of options so we can all find something to feel the best we can. I miss my long blonde locks I had just gotten colored with bronze lowlights before my mammo. But more and more I'm getting used to my very white bald head.

FightingLikeAGirl

Dance...my Dr.gave me Ativan and I took it at night for the 1st week after tx 1...its for Anxiety and Nausea...slept great! Now anytime im feeling stressed at night I just pop one and it helps take the edge off. At the beginning I was worried I was becoming a pill popper...now I just do what helps me get thru this madness.

I can't believe u had thrush twice...Urg! And down south too...I'm not sure I can handle it a second time...hope the probiotics work!



Husker...We are on the same schedule! Sounds like we've had similar SEs too...Hope tomorrow is easy for you. Your DH sounds like am amazing man who adores you.



Stacie...I'm so bummed...i had that hat in my cart and I got worried I was spending too much money and took it off!!! Darn it!!! Might need to make another purchase.

I noticed on some of the sites they show headbands under the caps...i think it looks cute and gives a little more coverage.



Maria...i ordered some of the pre-tied scarves too...thought they would make life a little easier...I've been wearing the regular scarves and I'm always feeling like they are falling off or coming untied.

vballmom

I survived my first treatment on Monday (A/C)!  I have been really queasy but today I am feeling the best so far. I went to work for a couple of hours.  No pain from the Neulasta shot.  I haven't taken anything preemtive.  Hope that's not a mistake.

 I got my wig but I don't know if I am going to wear it. I think I will be a scarf girl.  I am not good at tying things, so I think I'll get a few of the pre-tied ones.  I have a big hoopla to go to in two weeks and I need a new outfit.  Hopefully shopping won't be too traumatic.

 I love reading all of your posts. Sorry my brain isn't able to handle individual responses right now!

Ooooh...my cousin bought me a Kindle! It's charging as I type!

kjiberty

As far as feeling sick, I did not have Nausea with either pregnancy and have been lucky so far 5days past tx2.

As far as the wig thing, I feel the same like kind of like a fraud. When someone says they like my hair, I feel compelled to tell them it's a wig and I am bald. My co-workers told me today to just politely say thank you, but it's still hard



I, too, have unfortunately succumbed to taking ambien every night. My body needs its rest, right? I still fight sleep. I am lucky to get 4 continuous hours.

I shaved my legs this am. There was just stubble from growth from 2weeks ago, but I figured I am good until at least August!

Husker123

The steroids make me jittery so I take a half an Ativan just to stay on plant Earth! I found out a whole one is just too much. Makes me feel like I have a hangover without the fun!

I have been productive today. I'm getting my horse trailer packed for the weekend. I'm heading to a show I promised myself I wouldn't miss. I need my horse & friend time. I'll only be showing halter & it's indoors so I should be ok.  I have PLENTY of folks who will make sure of it. Then I will sit & watch, cheer my barn on, & visit. 

My port bugged me for about 3 weeks. I finally figured out that there was a stitch pulling at the end of the incision. I've been keeping it softened with lotion & it's much better now. Turning my head felt pretty weird for a few days but that's all gone now.

I still have hair down south, my underarm hair is gone. We'll see if anything comes back after shaving my legs today. Don't we talk about fun things??

Hope everyone is having light SE's

kjiberty

Husker123: Thank God we have each other!  Glad you're spending time with your horse and doing something for you! I know what you mean about the atavan.  It's like being on benadryl.  I hate that doped up, drugged feeling.  I still have hair down there as well, but it's getting less "plentiful".

Starting to feel the SE's from the Nuelasta shot from last Friday.  My lower back is starting to ache and feel crampy. 

Stacie

Finally got the nerve to shave the stubble patch off the crown of my head. Simper Fi- I looked like a Marine. I suppose if it was still long I'd look like Millie Vanilly (sp). Still have leg nubs, sparse south hair, arm hair, eye brows and lashes. I am on day 8 post #3 of ACT. I've got stubborn hair. Hope it's will to survive kicks in when I'm done.

Fierro6

In a perfect world:  I would lose all of the hair I must "get rid of" on a regular basis, and Keep the hair that I can style and look girlie.  

It's not a perfect world, though, so we'll lose what we lose, keep what we keep, and laugh together.  Dang leg hair...

LOL 

kjiberty

Stacie:  I hope you keep what you have.   On a positive note, my 28 year old son, who has always been brutally honest came home this weekend, and told me I looked cute bald, and had a perfectly "symmetrical" head!  Made my day!  

dancetrancer

Note to all - don't ever let someone do an IV "push" of dexamethasone instead of giving it in an IV drip.  My nurse today gave me 10 mg in my IV drip, forgot that I got 20 mg...so gave me the other 10 mg via syringe into my port....did it very slowly, then warned me I might get a headache or "bottom ache"...but that since it was done slowly the risk was low.

OH NO.  About 10 seconds after the push, I felt searing, burning in my butt hole (graphic, but you gotta know why you need to say NO if this ever happens to you!!!).  It also moved a little more northward...can you imagine.  Like being stung with bees.  Lasted about 15 to 30 seconds, made me yell out and stomp my feet around in my chair and squirm.  Never, ever, ever again.  You have been WARNED!

Made it through TCH3.  And now we wait for the crash in a day or two.  Yippee!  

sandik

I took a razor to what was left of mine this morning in the shower. My eyebrows and eyelashes are hanging on so far. Yay! Hope everyone is doing ok today.

Trying to think of something to make for dinner. Just don't really want anything. I ate a huge salad this afternoon. I mean huge. Went to the salad bar at the grocery store. I had been craving salads. It was like a $9 salad by the time I got done piling it all on. I ate the whole thing! I thought I'd have half for tomorrow. haha Guess not! 

IndigoMont11

Holy cow, Dancetrancer- thanks for the warning!



Kjiberty, I ended up taking Ambien after my BMX because I couldn't get comfortable/couldn't fall asleep without it. I had gone back to just melotonin before chemo, but after chemo that wasn't enough. My PCP who prescribed the Ambien said not to worry about physical dependency. So I've pretty much taken it every night, too. Except for the first week after tx, a half pill usually works for me. But half or whole, I don't ever sleep 8 hours. I wake up partly because I get muscle contractions in my chest since my BMX, and after lying down for several hours the tight feeling only improves when I get up. Also I kind of think it might be menopause related since chemo.



I keep hoping I can get back to just using melotonin. I don't care any more about being able to sleep without taking anything all - sleep is just too important.

IndigoMont11

Those of you who have tried coming off the decadron by taking one pill two days instead of the two pills on the last day, did that help at all with the crash not being so bad?

vickilind61

Indigomont1, I am having the same issue with sleep; seems I can't sleep without the Ambien or OTC sleep aids.  I have always been such a good sleeper; lay down and 20 minutes later, out like a light and sleep all night.  Now, doesn't matter how tired I am, I have to take something and then I still only average about 5 hours per night.  I try to take naps, but that doesn't work either.  Hate that. 

Cottontail

Well, my thrush is back.  Since this is the third time of having it, my MO called in a script for diflucan.  The "magic mouthwash" gets rid of it but it just comes back after a few days.  I've even been taking a probiotic AND eating yogurt (I gave up dairy a few months ago, but I'm desperate), and cut way back on sugar and refined carbs, and it still comes back.  

Still having a few issues sleeping.  I really don't like Ativan (makes me feel hungover the next day) and am really skittish of taking much of anything to make me sleep.  (It's kind of a complex situation.)  Trying to stick with Benadryl/nighttime Tylenol or Advil.  I've had insomnia for years, so that's just something I get by with.  

I was also craving a salad all day today, and made a gigantic one for dinner.  Loaded it up with "cool" things- cucumber, mushroom, vegan ranch dressing- that were easy on my throat.  It was so good! 

dancetrancer

Cottontail - so sorry to hear that.  I've had it 3 times, too (still have it - not responding to Nystatin yet this time, but my white count is up today and hoping that will kick it...plus I'm starting Neupogen earlier this round - day 1 post chemo...hoping that will help me kick it before my next nadir!).  I'm considering asking about the diflucan, want to read about it first.  I've developed so many allergies this year...relucant to add new meds without researching them first.  Just my weird body.  I hope it works for you!  Keep me posted! 

kjiberty

Vicki and Indigo:  As soon as this chemo thing is over with, I am going to try magnesium. But for now, at least the Ambien gives me 4 hours a night.....

Sandik:  Like your new photo!  

Cottontail:  Sorry to hear about your thrush.  My mouth is killing me tonight and I will probably be calling my doc in the a.m.  I feel your pain! 

babysammy

Wow, glad I finally searched this thread.  Have my second FEC this Friday.  The last one took 9 days to recover from.  SO dreading the next.  MO changed some things and promises me it will be better this time. 

I had decadron iv push with the 1st tx and didnt have the SE, but the RN did tell me about it.  Maybe I will ask her to mix it in a mini bag and drip it in.  Im going to be a big pain in the butt this time!!

Stubble on my head is starting to come one, otherwise all hair is thinning.  Except arms, eyelashes and brows.

Sorry to hear about all the difficulties with sleep and thrush.    Will be checking in regularly.

Mary

Stacie

Tomorrow I leave San Diego after my workday and head to Long Beach to spend time with four friends from my HS Drill team that have been my friends since, two lived on my street we've been friends since I was 11. I really really need this girl time and am so grateful. We've had a four-way private message going on facebook since my diagnosis. They are my peeps. PS Hail to the new American Idol!

vballmom

Stacie, sounds like so much fun.  I have barely left the house except for doctor's appointments these last two months. Yesterday when I went to work, just being in the car felt like freedom. I laughed and told hubby I feel like a dog that has no control and waits 'til her owner decides to take her for a ride.  I am definitely not ready to drive. I am not good on meds.  No biggie, though. I have three willing chauffeurs and this won't last forever.

I am in a crazy watermelon phase.  That's about all that interests me.  My husband cut up a seedless one and I am even sneaking out of bed in the middle of the night to get some.  All drinks disgust me, so I am looking for solutions.  So far, I can get plain tea down the best.

mt4ever

vballmom I know what you mean about the drinks!  It is really frustrating sometimes especially when you know you should drink to get the chemo flushed out!! 

We are going camping this weekend so I may have to try the watermelon!   

Stacie

Watermelon sounds devine vball. I understand your homebound lonliness. I just began travelling after 12 weeks and I was stir-crazy. I am fine to drive and travel, but my luggage is heavy from all the extra stuff I packed for SE's-- just in case. My fatigue, bone pain, and hotflashes make me feel more vulnerable out here. Then I remind myself I've travelled the world and am okay.

velutha

Steroids: I tried a variety of dosing schedules, and I crashed with all of them.  But that's just me. 

Sleep:  I personally don't like ambien -I've heard too many sleepwalking/hallucination stories to trust it.  Lunesta was my friend, and I did sleep 8 hrs with it almost all of the time I used it.  I did find that over time it's ability to help me fall asleep decreased.  Some of the ladies posting way back used a combo of ativan, benedryl, and ambien.  That's a little hard core for me, but if your MO is ok with it, well, sleep is really important.  I felt like a new person after I gave up and started using medicine for sleep every single night.  

Drinks: We kept the house stocked with all sorts of ridiculous things I would normally not touch.  I bought a lot of powders that you add to water (only the kinds made with real sugar, I hate the taste of fake sugar).  Trader Joes makes a pomegranate one that I liked, and this kind called real lemon makes a pink lemonade that I liked.  I also drank gatorade, ginger ale, sweetened iced tea, Arnold Palmers, water with a squirt of lemon, juice mixed with seltzer water.  Sometimes I would just lick a slice of lemon before drinking something, and it would help me get it down.  Alcohol: My MO said it was fine, just not the night before chemo (she knew d@mn well I wouldn't feel like drinking after). 

I have shown my boobs to 4 different MDs this month.  I'm a walking advertisement for my PS.  FYI, since I just saw him, I thought I'd pass along to all of you that there are some microvascular plastics people (those who do DIEP flaps) who are now trying microsurgery to treat lymphedema.  They transplant a chain of lymphatics from somewhere else on your body to your axilla, where the lympatics were removed, and connect them to the lymphatic vessels in your arm.  It's experimental and so there aren't a lot of people doing it and there isn't much data to support it, but my PS thinks it's worth trying for some patients.

Sandik, I'm with you on the wedding tears.  OMG, I about lost it at a wedding in March.  Made me sad and angry at the same time.  I felt like the bride and groom were being told to live happy, perfect lives, and I wanted to tell them that was a stupid mindset to have walking into a marriage.  Better to think your partner is a soldier who will have your back no matter what (and vice versa), not a person to take tiptoeing through the tulips.

I go in for my exchange surgery Tuesday.  Wish me luck! Have a great holiday weekend!  You can do this, just don't do it alone!

sgtgee_69

 I want to thank everyone for all the wounderful advice.  I'm hanging in there, work hasn't been too bad.  I have a grea boss that is working with me. I went to the doctors yesterday, and they helped me in the sleep department, pain, right after treqatment, and anxiety.  Well the diarhea is still the most prominent right now.  I have taken so much imodium that I thought it would lock up my biles by now.  Jusr praying that is kind of simmers down. This is day 8 post treatment, I'm in better spirits since the muscle and body aches have become tolerable.  I just want to thank you all for your support.  God bless you all

LinnieB

Thanks ladies for your comforting posts and suggestions.

I had the first infusion yesterday, and it was really an easy procedure. My best friend went with me to keep me company. We were in an infusion room with about 10 other patients, but we're able to sit side by side with the curtains pulled slightly around us for privacy.
I had my bag of goodies: blanket, pillow, snacks, iPad, iPod and water. I uses them all, and noticed other people had similar bags.

I have a port and I am oh so glad that I do. I didn't numb it, but it wasn't more than a pin-prick when the nurse accessed it.

I first got the anti-nausea meds, and then the chemo. I didn't feel anything the entire time. When we were done, I felt slightly light-headed. My doctor decided to see how I faired this first week before giving me the neuporgen shots to take home and self-administer. So, I go back next wednesday for a blood test.

The only thing I noticed last night was extra energy once I got home. I went on a cleaning spree until I forced myself to stop. I had a headache when I went to bed, but it is gone this morning. I woke up feeling fine.

I keep waiting for the other shoe to drop, but right now, all is well. Is this fairly common? Will the symptoms creep up? The nurse said 24-48 hours, I would feel something, but said I did really well for my first infusion.

IndigoMont11

Go Velutha - all the best with your exchange surgery! I just heard last night, btw, that the "gummy bear" implants have been approved. I'm a ways out from recon still but will be gathering info.



I can't remember who it was that posted about getting a Kindle Fire, but I hope you enjoy it as much as I have my Nook Tablet. I bought it while I was waiting for the results of my biopsy in February. I loooove it - take it to all my treatments and use it to read, surf and message!



Stacie, you drove to California or flew?

sandik

Linnie,

Are you doing AC? Im usually good until my 4th day. Even that is just fatigue. I sleep ALL day.