January 2013 chemo group

Oliverhog,   How many of us on this thread had Hodgkins 15-20 years ago?  At least three, I think. (Mine was 1992, and I had chemo- ABVD - but no radiation).  It seems like a strange coincidence!  I was always under the impression that Hodgkins was fairly rare, and all these years I never worried about having a higher risk of BC.  (Just as well I didn't worry - wouldn't have helped, I guess!)

As for breast sensation questions, I had the BMX with reconstruction eight weeks ago, and I do still have some sensation in parts of the area.  And some odd little "phantom sensations", like the nipple feeling when I get cold, which is kind of funny considering there's no nipple there anymore.  It takes some getting used to, but I am COMPLETELY happy with my decision to do both sides.  

Happy Tuesday everyone!

Mermaids & Cancernoway (my neighbor to the north) welcome and sorry you had to join us, but its the best place to be! I was diagnosed 12/17. You have a great attitude and you'll do fine! I'm only a week into my tx, but its doable so far. Not my favorite pastime, but kicking ass is and that's what I'm doing with chemo.

Kiwikid-I hope my skull will be as lovely as yours and glad to see someone else bounces between anxiety and acceptance. I remember when I got hooked up last week to the drip I felt a weird zen-like calm about the whole thing. I attribute it to my faith, but either way it was odd.

SherylB- your post to gd2shuz was just what I needed to read this morning. you remind me of my mom who is 10 yrs out of this and one of my rocks.

Gd2shuz-you are in my prayers (like everyone else) and like skimommi's profile says "if God brings you to it, He will bring you through it." We all have good days and bad days but all the support here helps so much. As for food- I was overwhelmed like you-so worried about what I would want. I made a big stock pot of vegetable broth (I'm vegetarian) and would drink that which was comforting and has minerals in it. (Also freezer friendly). I ate a yogurt everyday with some toast, and I really wanted canned fruit (bizarre) and jello. My mom, who had a really rough time with chemo, even was able to get up and make herself something to eat because my brother and my dad, as she said, were as useless as teets on a boar hog.

Zorina-I'm jealous of your sleep. Have some for me :-)



Good luck to all that heads to happy hour today!

Nikki

Mmmm....taco bell bean burrito. Thanks a lot Paula! ;-)

Espacially in windy winter take care of your wig or hat to fall and leave you topless

Soteria 25, thanks for the Mc D's fish sandwich idea>  I actually just ran to pick my dog up from groomers and stopped and got 2 fish sandwiches.  Ate one when I got home, actually tasted better than anything else I've had.  I will eat the other one later:) That made my day.

Nikkiliz-Thanks for mentioning the EDY's bars.  I keep forgetting to pick them up when I'm at the store but they are on my list of things to buy:)  Iv'e heard from several people they are fantastic.  I haven't used any metal utensils since I've been having this problem.  Hopefully taste buds will come back soon. Maybe I will try some alfredo. 

Thanks for all the other suggestions everyone and hope everyone is having a good day or better days for the ones who haven't felt good.  Anne

Maybe I wil try some ginger....

Pet scan was clean. Yay! Had port put in today. No chance of it puncturing a lung cuz the doctor actually attaches it to a vein by or in the neck. Feels like it is pulling. Did anyone have it done that way?

I had to share this.... I ran out of the house yesterday to run an errand. I wore my BUFF and I really could care less that I had no hair at this point. I ran into Staples to fax something and found a line for the self fax. I stood there patiently and waited my turn. When I got up to the machine there was a woman my age standing next to it waiting for a printout. I smiled politely and started to use the machine. I glanced at her a minute later and she was STARING at my head. I smiled at her again and she looked away quickly. The rest of the time I was there I felt like EVERYONE was looking at me. I don't think I let it show that it bothered me that she was staring. I wanted to ask her why she was staring at me, but, I just didn't want to deal with it. So, later on in the evening we went out for a bit and had a beer with some friends. I wore my BUFF again and I felt very comfortable. By the end of the evening I took it off because they all wanted to see what was left of my hair. It was no big deal by then. I learned something yesterday... Strangers are curious and sometimes people are insensitive. My friends and customers care and they DON'T care if I have hair for now. They are there for me and find it cool that I can show them my head and not be scared. So, ignore all the idiots and hold your head up high when you are out. Wear what you feel comfortable in. Hat, scarf, wig, nothing,... its not your job to make everyone comfortable with your situation. You need to feel comfortable and do what works for you. Screw everyone else. I'm still trying to figure out what makes me comfortable. We will see...

For all the new ones that joined us... welcome to the club no one wants to be in... You have found a group of very knowledgeable, helpful and strong women... I have learned so much.

For those who are on Facebook, we have a 'secret group' called Ciao Bellas. Friend me (Debbie Inzana) or (Nancy Prior Phillips) and we will add you. It's easier to share photos and stuff there. It's a little more protected too...

Thanks for all the compliments on my round head... lol. I know a lot of us are having a hard time with the hair loss, so, I am happy to share and say it's OK. No one can expect us to look like beauty queens through all this crap. I startle myself sometimes when I look in the mirror. I don't recognize myself yet.

The lake effect snow band just dropped south and we are getting dumped on!!! I live about 2 miles from the Lake Ontario shoreline and its nuts when the lake effect machine is in full dump mode. We could have a foot by the morning and 10 miles to the south will have nothing but frozen grass. Thank god my DH fixed the snow blower...

Happy tuesday everyone!!

PET Scan results were clean, YAY! and ECHO says I have a heart and it is working correctly.  Port placement Thursday morning at 9 am with Chemo to follow directly after.  I had to laugh at the lady from the office that called me today.  Reminder, I don't have a colon, had it removed 6 years ago.  She is telling me that she is calling in a prescription for a water pill to take tomorrow and on Friday and some Compazine tablets and Phenergan suppositories.  I said, Do you remember that I don't have a colon and can't do any type of suppositories?  She stammered for a few and then laughed and said, I was just going through my normal motions and luckily you are paying attention and aware of your health and called me on it.  Phenergan will be pill form as well.  So.....Thursday will be a long day, but at least it will be started and closer to being over.  I work for a hospital and am very lucky that if I have my treatments there, they are paid at 100%.   I will be heading back in on Friday for Neulasta shot, but then will be resting for the weekend.  I do have a question, does everyone have a ride the day of treatment or do they take themselves.  I know I have to have a ride this week do to the port placement, but I'm curious if I will be let off the chain eventually.  I live about 45 minutes from the hospital as well.  Just curious so I can make arrangements.  Thank you for welcoming me to this fantastic group!  We are a bunch of strong women and are ready to kick some ass and take some names! 

Oliverhog, you have been through so much! It sounds like your docs are watching out for you, and I'll be praying all the best for you.



Welcome cancernoway and mermaidia...sorry you have to join us but I know you'll find this group a wonderful support for you. It's am a huge difference for me to share with these wonderful ladies.



Anyone having trouble with dry eyes?? I am having an issue and trying drops and warm compresses, but no real change yet. I hope it resolves quickly like the few other things that have popped up.

WooHooo Colleen and Cancernoway!!!!!!!!!!!!!!  <<happy dance>>
collen I dont think you should be feeling pulling or weirdness from the port.  I have mine in front of my left shoulder and dont feel it.

Skigirl, really wish you woulda - you know - asked the chick staring at you...."what?!" :P

Nikki, I would just keep boss up to date (<I was actually typing "keep boss abreast of everything" ) if not constant.  Then they'll be asking you to just let us know when you can.  Atleast that is how I manage micromanagers.  Sorry you have THAT on top of everything else.

Seattlemama- It was unusual because under normal circumstance I would have called her out... I guess I left my armor home lol.

Happy there are some clear PET scans!! Good news!

hope49- I wear contacts and I was having trouble with them. I thought maybe they were old b/c they felt dry after just a few hours. Maybe it was my eyes and not the contacts.

cancernoway- I have my DH drive me. I've been to one and I was a little loopy when it was time to go. I am planning on having him drive me again for the next one on Friday. I would hope I'd be able to drive myself at some point. It was all a blur anyway with the tons of info. This next one should be a bit more straightforward so we will see how I do.

Paula- looks like its McDonald's and Taco bell when my taste buds vacate for a few days next go around... gotta remember this...

Colleen- I don't feel anything with my port unless i am sleeping on that side. no pulling or anything. It did take a few weeks for me to really get used to it though. I ignore it now.

nikki- If you are on short term disability, aren't you supposed to NOT work? I had a return date on my forms and couldn't come back until then. if it's something different, then I would tell them that every chemo infusion is different and there is no way to predict how severe your SEs are going to be. There must be some job security somewhere even if the co. doesn't fall under FMLA guidelines. Good luck!!

We are registering 8 degrees and persistent snow bands... burr... thank god for bed heaters and warm guys!!! and fuzzy PJs...

hi everyone I'm new to this group been reading all the posts for the past two weeks since I found out I needed chemo. my oncotype score was 19. I'm over the shock...I think. reading all these posts has been such a help so many wonderful women here. I'm preparing myself the best I can. I go Thursday jan. 24. so many rules I just hope I can handle it. I can say everything has gone smooth up to this point with my bilateral mastectomy my tissue expanded and my new port. with all this happening to my body, I thought it would be worse so surprised how I handled it. I try to stay positive and just think about the upcoming steps being over. I am a little scared about all the possible side effects, so just hoping for the best. I plan on still working and doing my normal stuff.



anyway thanks for reading this and thanks again to everyone here for all the support. I hope to be more active now that I'm starting and share my experiences and get some support, help and tips.



Tammi

Hi Tammi. Good luck on Thursday. I am right behind you. I start chemo on Monday. I am really nervous too but reading what the other women have to say is helping. Colleen

Skimommi gave me some links to check in order to find some assistance, and they may be helpful to some of you younger women.  It seems that I am too old...I found two that would offer financial assistance if you are under thirty, or under 40. One has a questionaire to complete, and they tell you what you may qualify for. There was nothing for me but there may be things there for others, since we all have different life circumstances.    

Here they are:

CancerCare.org/financial (Metastatic breast cancer is covered, but not primary breast cancer).  Some other cancers

                                  are covered  as well. 

www.cancerfac.org ---- This is the Cancer Financial Assistance Coalition.   You have to be under 30.  They

                                  also have early detection services for 18-40 year olds if you know anyone who needs and

                                  can't afford a mammogram.

Govbenefits.gov           You complete a questionaire and they tell you what you are eligible for.