January 2013 chemo group

MandyNJ

Thanks for the well wishes! I'm as ready as I can be, I guess. I've been so distracted this weekend that I haven't had much time to think about it. S that's good that I was brooding or anxious. But I kind of feel like I have an exam tomorrow and just remembered to study.



My port placement recovery is going quite smashingly. It was a non-event. I took the bandage off today and showered. (surgeon wants it covered for 5 days, no showers) to reduce likelihood of infection. It looks like I was/am rearing a bit to the adhesive on the bandage, but it's going away.



Debbie - that's insane. Unless she's had cancer, and really, not even then, she really can't say how anyone with cancer should react. She can suck it. :-). Glad you get to go back to the bar this week. Hope your tips are plentiful.



I haven't really been told what I'm supposed to avoid during chemo in terms of food. Maybe she'll tell me tomorrow. What's up with coffee? Am I really supposed to not drink it? That's bananas.



Oh, my son is doing much better and I think it's because we were back in routine with mommy dropping off and picking up (which means chemo is going to throw him off again). No belly aches. I spoke to the social worker at the hospital and I'm going to bring him in. She said that I'm doing a great job so far with being honest and upfront with him (though I kind of refuse to use two words - cancer and chemo). She said shed like to make sure that he's hearing me as I'm intending or maybe she can draw out of him something bothering him that I've been unable to grasp.



I will let you know how ridiculously uneventfully my 4 week delayed tx#1 is tomorrow. I'll try to sign on from "the chair" because the iPad is going with. As is the nook. And a sudoku book. And my iPhone. And my goofy husband. Haha, I am determined for this to go by quickly.

VirginiaJ

Mandy & Colleen -- hope all goes well with chemo tomorrow and that you have few SEs.

Honeybair -- I pray that your port placement is uneventful.

Best wishes to everyone for a peaceful and restful Sunday evening.

Bryona

Debbie, wow. Your cousin is just... wow. Wow. On the other hand, so excited for you going back to work! Just remember, in the midst of all the germaphobia urges, that you need to protect your hands, especially your fingernails. It shouldn't be much of an issue now, but when you switch to Taxol, those babies need to be really, really babied. I'm just thinking about the ubiquitous bleach water from my bartending days, and I'm thinking that would be a bad idea. Gloves, gloves, gloves.

Mandy, it's always lovely to hear that things are uneventful in your world, and I'm glad to hear that your son is doing better. I hope that continues every day!

Martha, thanks for sharing with us. It's funny how we can suddenly be blindsided by those kinds of feelings. I'm glad you feel comfortable sharing it here; it's good for all of us. Hugs to you, honey, and hopes for many, many days without being blindsided by anything worse than an unexpected delivery of chocolate and flowers.

Virginia, I like to think you're right about people being sad to see someone so young going through this. I like to think we all feel like that about anyone having to go through this. You know, we can get so tied up in our own experiences that we forget other people have them, too. When I see someone sad in the chemolounge or in my MO's office, I think maybe she's having the same kind of moment that Martha described. They just catch us by surprise, and all we can really do is love each other through it. Anyway, I think if I were in your chemolounge having a bad moment, and you tried to be friendly, I'd be glad. You're pretty wonderful.

Bryona

forest, that's rotten luck! I hope the abx kick that infection's butt, and that you're able to get started (and finished with) this chemo nonsense ASAP.

honeybair, good luck with the port placement. Mine was easy, with just some painful pinching around the catheter, and these days I don't even think about it. Smooth sailing to you, sweetie.

Shan, in your spare time, you could write an opera. It could be about cancer and crack-pugs and chemical warfare. I don't think that's been done before.

chgogemini, I hope the nasty effects of the Neulasta wear off quickly, and that the good ones linger.

lolalou, I'm sorry you're stuck with this, too, but I'm glad you've found us, and I hope you find what you need here. You hang in there.

kingboo, maybe there won't be an onslaught. Maybe those SEs are looking at you and thinking, "No WAY are we messing with her! She looks dangerous!"

LeeA

Re: Facebook - 

I'm not really a Facebook person.  I had an account in my maiden name and then forgot all about it (never did anything with it) until my college boyfriend stalked me down yet again (he did the same thing ten plus years ago thanks to classmates.com).  I deleted that account a few months ago (after getting a notice that he wanted to follow/friend whatever it is).  

I had a second account that I set up with a pseudonym a long time ago (lol - I'm paranoid!) and about a week before my BMX I set that up to follow (?) one person on Facebook who has written a book on a ketogenic diet + breast cancer.  She's the only person I follow. 

On the other hand, I would like to join in the merriment*.

*waves to the person who thinks we're not being serious about dealing with breast cancer*

- Seriously though, regarding not being serious enough about cancer - hey, it takes some real effort to not let this diagnosis steal the joy from our lives.  Sometimes, if you don't laugh - you cry, ya know? 

LeeA

forest, I just wanted to say - wow, your post...your experience.  So, so scary. I had an infection as well and it ended up testing negative for MRSA but I, too, was on the vancomycin for a full round - then clindamycin.  What an experience you've had!  Wishing you well in the future with chemo, continued recovery, etc. 

Mandy, good luck tomorrow!  It sounds like you're well-prepared and you have your best accessory going with you - your husband!  (but the iPad will help as well - I play FreeCell on mine to pass the time - plus, I peruse the internet).  Also so happy to hear your little boy is doing better.  

Jean, great news on the walk to the drugstore on your third day!  

ablydec, I'm at about the same place as you are with the hair - there's some left but I just keep it covered up all the time, mainly with my handy dandy 99 cent store ski cap which isn't too tight on my fat head.  Some hair (*cough cough*) is still there.  Almost completely.  Perhaps it is waiting to exit stage left with treatment no. 3, which looms in the not-to-distant future. 

Martha323, I hope you end up getting into the Herceptin arm.  My oncologist mentioned that study because he wanted me to be on it (hopefully?) no matter what.  After my first dose (sans chemo) he called the next day just to see how I had done on the loading dose.  

chgogemini, did you take in the days prior to and after the Neulasta shot?  

VirginiaJ, I loved reading these words: "Haven't been on for a few days because I've been enjoying feeling good" - and love the avatar!  47 years...congratulations!  

Skigirl, best wishes on the first day back on the job!  Just put an imaginary force field around yourself and tell those germs to veer away!

teacherjulief

Good luck to all this week.  Hope everyone has a good week with minimal SE's. Hugs from me to Martha, too.  I am feeling really good right now (10 days after treatment #1) which I am very thankful for, but it is going to make treatment #2 on the 21st really suck.  I am waiting to see if my hair starts falling out this week.  I have to get my daughter to help me upload a picture.  I got my hair cut pretty short in preparation, too.  Have a wig picked out that is a similar style and a fun reddish color, so it will be actually something to look forward to (okay, sort of).

InspiredbyDolce

I have to chime in, on the getting spied on thing.  Unless someone has a pending or bc diagnosis, nobody can really understand how we all communicate with each other, and how supportive this group is.  It is very healthy to laugh - laughter does help heal some of the emotional wounds and well, it helps the physical healing process as well.  Obviously the reason we are all here, is because we feel scared, vulnerable and know that this is a forum to feel safe in.  An outsider reading our posts will never understand the importance of connecting with someone who is facing similar trials in life.  

Martha, if they know Herceptin is a benefit to you, and if you aren't selected for that part of the trial, can you Oncologist put you on the medicine, so you receive the benefit?

Mandy, good luck to you tomorrow and Collen, I hope treatment #2 goes smooth for you!

The red carpet stuff is starting .... I've got to go see what is going on.  I like Guilliana Rancic, she is such an inspiration.

Have a nice start to the week everyone!

- Looking for recipes?  Try the What's for Dinner Forum

LeeA

InspiredbyDolce - this is so, so true!  

An outsider reading our posts will never understand the importance of connecting someone who is facing similar trials in life.  

Thanks for wording it so perfectly. 

InspiredbyDolce

I forgot the "with" so I added that in!  )

chgogemini

LeeA



I took claritan two hours before the shot and the next day. Should i take it the day before the shot next time? I didn't take claritan today because i didn't feel like it worked. I'm still hurting and I had that shot on Friday. :-(



Hopefully tomorrow is better.



Good luck to everyone going to the bar tomorrow.



Gina

hope49

Hi Debbie...I set up a FB page and sent you a friend request..we'll see if it works, Leslie

cancernoway

I was told that the Herceptin makes your body hurt until your WBC gets low enough for it too kick in.  No one told me about taking the Claritin, but I only had neck tenderness and a pain in my hip.  It wasn't terrible, just irritating.  I've heard of some people having some super crappy pain with it, but the nurse told me you can tell when the Herceptin kicks in, you feel so much better.  About day 7 or 8, all my pains went away almost at one time.  That is probably the day it kicked in. 

I agree with the others, someone that doesn't have cancer doesn't understand what it's like.  Knowing that we can come here and vent or joke or whatever we want is half the battle for me.  I said a few days after joining that I felt grateful for finding you all and I still feel that way.  Part of that is BECAUSE we can say what we want and no one gets offended.  If someone that doesn't have BC is stalking our site and THEY get offended then get the F off our site.  No one invited you and don't rain on our parade.  This is part of how we deal.  Proud of you Debbie for telling her off, I would have done the same.  Good luck going back to work this week.  Have some fun!!!

Martha - It's amazing how fast emotions can rise to the top, but even more crazy is how fast they drop.  Some days the roller coaster never stops to let us off.  Luckily, not everyday is like that and knowing that makes those days a little easier.  At least you didn't yank her hair out of her head.

Good luck to Mandy and Colleen tomorrow.  You will do just fine and it sounds like you have all your entertainment packed up and ready to go.  Remember to hydrate, hydrate, hydrate.

So here is my piss me off story of the week.  I cut my hair really short awhile back in preparation for the follicular fallout.  Thursday a second shift nurse that I'm not exactly close too comes up to me and actually pulls my hair and say "I just wanted to see if it was yours or a wig".  I wanted to smack the shit out of her.  I said, "Well it's still mine but probably not for long and you are lucky you don't have a handful of hair and if it was a wig, it would be in your hand right now."  Seriously!  Who acts like that?  She is lucky I'm not sensitive about the whole hair issue or I might have been in a puddle on the floor.  I just couldn't believe that someone that takes care of patients everyday would act like such an idiot.  It makes me wonder what she says to our patients on a daily basis.  I sort of wanted to punch her just for good measure, but stupid people walk among us and I still need my job.

Everyone have a good Monday and anyone heading to the bar, best of luck.  Here's to minimal SE's and a great week.

Lolalou

I just sent a fb friend request to Debbie. I haven't started chemo yet but I sure enjoy being informed by all of you on your experiences.

Bryona

Chgogemini, my MO said Claritin only helps about half of the people who get bone pain feom Neulasta. Have you asmed your doc for pain med options?



Cancernoway, I hate to think what I'd have done.to that nurse. Holy... wow. What os with the insensitive people today? Maybe we should create a separate support group for them at www.callousjerk.org. I wonder if any research is being done into the treatment of THAT disease. Sheesh.

jayjayc

hey all,



I wanted to add my number one chemo day item....... easy on/easy off pants. I wore jeans my first visit and regretted it the first time (and there was more than once) I ended up in the bathroom...... I don't have a port so trying to upbuttoned/unzip with one hand when the other hand has tubes every where and really really needing to pee..... NOT a good combination...



I also wanted to let each and everyone of you know how awesome your humor is..... and how much it's needed. I was feeling pretty down on Friday and heading towards a pretty good pity party (whine included) but instead I curled up in bed and caught up with your posts...... made me realize that I'm not alone and that a lot of you are handling things that are even tougher than what I'm doing...... made me put back on my big girl panties...



May you all have an exceptionally awesome Monday

Colleenkelly

Mandy, it's you and me at the bar tomorrow. Good luck sweetie!!

Colleenkelly

Gina, my MO has me taking claritin once a day and aleve twice daily for the neulasta for three to four days.  I take claritin everyday for my allergies anyway. If I were you I would take it the day before also. I did not have any pain from the shot last time.  We will see this week if it works again.  Hope this helps.

Oliverhog

Haven't been on in a while.  I made my way up to page 56.  Some of my comments might be outdated by now. 

Skimommi, I’m thinking the stone of the feet would be O.K.  One of the issues is not healing properly especially because of the high doses of steroids and possibly because we need lots of protein.  There’s also the risk of infection with counts being low, but if you timed your pedicure around the nadir I think you’d be O.K.

Kiwikid, I think the technology with radiation is so much more targeted that the risks are a lot more minimal than they were say even ten years ago.  Also, I think it may depend on the location of the tumor and the lymph node involvement so that the whole chest may not be radiated. 

Louise, I think 64 oz or so of fluid, any kind of fluid, is generally a good thing chemo or no chemo.  So, I would keep trying to get as close to that as possible, just time it so you’re not doing a lot of drinking close to bedtime.

Ablydec, they do a smaller dose of Neulasta.  My first dose was 6 mg.  WBCs were 22,000 by day 12 and then 10,000 on my next chemo day nine days later.  MO reduced the dose to 3 mg this last time.  And my throat feels weird.  Sometimes if I haven’t swallowed in awhile I feel like my esophagus is dry in patches and it kind of hurts.

Watta, I just read your story about the rare nature of your cancer and your sorrow over how this damn disease may affect your longevity.  I often wonder how much longer I’ll be around because of this damn lung disease from previous chemo and radiation.  It really bothers me that I’m 50 with a seven year old son instead of a 27 year old son and 33% of predicted normal lung capacity.  How many years can one reasonably expect to live with this severe restrictive lung disease?  It’s really hard for me to project into the future.  I’m so sorry you suffer those same feelings.  My heart hurts for you.

Mandy, I seem to have developed a bit of rosacea or cutaneous lupus erythematosus on my cheeks.  I’ve been putting  Fruit of the Earth 100% aloe vera gel on the patches and it seems to be reducing the redness and burning/itching sensation pretty well.

VirginiaJ, your post about your husband not being able to do much other than tell you how much he loves you and how beautiful you are is so sweet.

SherylB, about those masks.  When I was in the hospital in isolation for mycoplasma pneumonia the staff and visitors all came into my room wearing masks.  Was that so they didn’t give me their germs and possibly make me sicker?

LeeA, sex on top?  Is anyone really thinking about sex right now?  My husband would have to put me there and then I’d lie there draped over him like a saggy old sack of bones.  Sans one breast and Frankenstein scars across my other where my breast would be spot meanwhile he’d be seeing images of James Carville hovering over his face.  (That’s what I think I look like bald!)

Gr8flmamma, speaking of squirrelly looking headpieces, I wore a Shaggy wig from my husband’s and son’s Scooby doo costume to my second treatment and told them that was all our insurance would cover.

Jubby, I had the same thing with the mouth ulcers when I was a teenager.  I had a mouthful of braces at the time.

Skigirl, I just checked out casttoo.  He might like that.  Thanks.

O.K.  I've got a lot more reading to do tomorrow.  I'll catch up with you then.

SherylB

Mandy, Sounds like you are doing really well with this rocky road challenge. I hope your first treatment is a relief like mine was. The anticipation is always the worst part of any new event. Praying for no problems and minimal SEs. I strongly recommend keeping ice in your mouth through the T chemo. I have had two treatments and other than mouth being tender at times and crappy tastebuds the mouth has been fine. I use the baking soda/salt/water rinse at least 3-4 times each day. Vaseline if you get any nose irritation, not much rinsing you can do there but salt water nasal spray helps with the dryness.

Hugs, Sheryl

SherylB

Oliverhog,

Sorry darling but they were wearing masks so they didn't catch whatever you had. You should have been on droplet precautions. Meaning that when you sneezed, coughed, and even talked droplets of saliva, mucous etc could be released into the air and someone who wasn't sick could inhale your droplets. Lovely huh?. They may not have made your family wear masks (although they should have) thinking that they were already exposed.

Hugs, Sheryl

Jubby

Hi everyone,

I'm soaking up my last good days before my next blast on Wed. My treatments have been moved forward a day so I'm one day ahead of you now Cancernoway

I have the GI Jane do now and bald patches everywhere. I have been sporting the wig and although everyone tells me it looks good, I feel odd in it. Hardest thing to remember is to not tuck it behind my ears.

Martha, my heart goes out to you and I totally get your rant. Big hugs.

Big hugs to you too Oliverhog - you are one incredibly brave lady. So courageous.

Will check out until next round on Wed. My onc thinks it will be easier as my body now knows what to expect. Let's frigging hope so!

Good luck Mandy & ColleenKelly!

J xox

Anonymous

cancernoway, that lady pulling on your hair is unbelievable and pisses me off!! What the hell is wrong with people?!? Who would ever think that is okay?

And skigirl who in the hell thinks it is okay to read up on our posts? What does "taking it serious" look like? We have put our bodies through hell so does that mean we should curl up under the blankets and cry and mope everyday about how terrible this thing is that has taken over our lives? Attitude is everything and if we don't laugh we don't live.

Oliverhog, you may have posted an update somewhere along the way about your son. But, since I didn't catch it, how is he doing with his arm? Hope it is healing well.

LeeA

Mandy and Colleen - good luck today!

cancernoway - the rudeness of your co-worker makes my head spin.  Whatever happened to good old-fashioned elbow room? 

Jubby - if all goes as planned, my next treatment is Wednesday as well but with the time difference, your Wednesday is my Tuesday :-)

Oliverhog - you're beautiful with hair and without and look nothing like James Carville!  Also chuckling at the Scooby Doo wig.  You probably looked good in that as well!  

Sheryl - I always learn so much from your posts!

Everyone, wishing you a good day with little to no side effects!

Fighter69

Ciao , Hope all is well everyone.

  First round of chemo mann what a ride ! Could not keep anything down for 2 days . The nausea meds made me feel worse so I got me some good old Pepto Bismol I felt better almost instantly . I recieved a shot the next day after chemo to bring white blood count up so far so good with se's". Will see the doc in the am for blood work .

My question is about port placement has anyone had any problems with their ports as far as pain in the kneck area or should there be any pain at all as it has been a week now ?  The doc removed the stapples from my kneck and it hurts not unbearable but uncomfortable . He did not remove the stapples from my chest area as he says it is still red there so I will see him this Sat for that . 

 Next chemo is Next Monday and I def.will be prepared been drinking nothing but water and green tea with lemon . A boat load of raw spinach in my salads and a lot of fruit . Walking an hour a day makes me feel great and combats the fatigue and getting a lot of rest. 

Will keep you updated and take care all .

Fighter

Skigirl72

Just scared the RG&E meter reader guy. I answered the door with nothing on my head. LOL My giggle for the day. AHAHAHAHAHAHAHA.

Bryona- I am worried about my fingers in all those chemicals at work. The hot bleach water and sanitizer is going to kill them. I have good rubber gloves and I warned all the kitchen guys that I was bringing them all my glasses for them to wash. So far they are just happy for me to be back at work.

jayjayc- my chemo outfit is sweats, a tanktop and a long comfy sweater. I have a pair of fuzz lined crocs and I love them (don't judge). So, I am all about comfort. I wear my BUFF on my head and my glasses. I figure they want you to be comfortable so I hake that to heart!!

Jubby- I always tucked my hair behind my ear... I am going to have a hard time not being able to do that too... I am also waiting for the day I'm so busy behind the bar that I'll do something and my wig is going to fly off... LOL

cancernoway- anyone every pulled on my hair uninvited would have recieved a brand new shade of eyeshadow put on by my fist... :-)

Fighter69- I had soreness for a few weeks. I has my incision glued- so no staples. See what he has to say. And remember the numbing cream 2 hours before they access you on Monday. It really helps.

The American Cancer Society has a wig room that you can try on a bunch of wigs. If you find one you like you can take it with you. no cost. I plan on donating Cousin It to them when this is all done. That's a nice service. I think some hospitals do this too...

SherylB

Skigirl72 and cancernoway,

I didn't have anyone pull on my hair but mentioning insensitive people. I went in for my port and my blood sugar was high. I hadn't been the most compliant diabetic to say the least but after the diagnosis I was working to get it down. The nurse walked in the room and without even introducing herself said,"what did you do eat a whole chocolate cake last night." I wanted to smash her but figured the only one who would get upset was me. Being a nurse for >30 years I said, is that how they are teaching you younguns to talk to patients now days? Glad I am an old nurse. She apologized but I bet she never forgets this old bitch. I wanted to cry but felt I did get the last word. We all have areas that we are ultrasensitive to that other may never even think of, so best coarse of action is politeness until the patient sets the tone.

On a more humerous note. I have to go for periodic urine drug screens (long story) an today the lady told me I had to take off my head covering. I said what you think I have a test tube of piss hiding up under here? She cracked up but let me put it back on. The shit we have to endure. Friggin amazing.

Sheryl

smethot

Debbie...your meter reader reminds me of the day the UPS guy showed up BANGING at my door (with my new hats from headcovers) while the nurse was changing my bandages and draining the ick out of my tube post-surgery.  There i am, standing naked from the waist up thinking to myself, "Damn...i really want those hats.  Seriously, everyone on the continent has seen my boobs at this point...would one more person really matter???  Its just Frankenboob and a tube...how badly could it freak the UPS guy out?  Would he have nightmares?  Need counselling?  I really don't want to have to drive to the damned depot to get my hats when they're RIGHT THERE!!!".  Thankfully discretion won out over convenience and the UPS guy survived unscathed to deliver other packages...but it really was tempting to just answer the door scar-boob-free and let the screams happen as they may. 

SherylB

Shannon,

Thanks for the laugh I had such a visual of the delivery guy, running down the road never to be seen again.

Sheryl

Watta

Oliverhog, I think everyone who goes through this fears this. It's the nature of the disease. I only put into words what we're all afraid of. Frankly, I'm shocked at the number of young women (yourself included) who are fighting for their lives against BC and other complications. Until I joined this forum I thought BC was a disease for older women, but now I know better. I pray for all of the women on this forum, but I have a special sorrow and special prayers for all of you with young children and families. That's why I believe that the humor and spirit expressed here by everyone is so important, it's part of the fighting spirit we all need to survive, and no one who hasn't been here can possibly understand, not even our dear husbands, children, family and friends.



Keep laughing, my friends, and we'll get through this.