Is There A September 2011 Chemo Group?

Babsbrink - Rant away! I have had a miserable time with side effects but can't imagine vomiting all the time. I think that would make it even worse. Hang in there!

Maggie and Sarah -I'll repeat the chorus...don't feel guilty...I totally rejoice that you aren't having the awful side effects in addition to the hair loss and knowledge that you are fighting a terrible beast.

Belle - I'm so glad you were well enough to go to your Hometown Christmas with the grandchildren. I hope it lefted your spirits

Debbie - So glad you will get some uplifting time with family. It sucks how much cancer takes from your life.

Kelli - Congratulations on your sonand I sure hope your eye is finally clearing up.

RJ - So great about the chili benefit! It is wonderful that you have such a great group in your life. The socks sound adorable. I got this rediculous nerf gun for my son and found thse really cute glass beads for my daughter. I bought myself something too! The dogs should definitely get you the socks...it's the least they can do!

hi all, first off cooka good to see you and rocky congrats on your last treatment,you did  it,girl!!!!!

now for my b***ch session, i hate my dr"s phone system it is the pits. i called last thurs after getting home from there. i couldn't find my steroids she had prescribed before and she said to call if i couldn't and she would call in script. come fri no script, call again, let them know i had called day before, no call no script. the lady said i will send another message and tell them to call you when they call in script so you will know. okay

well, late fri afternoon still no call, call the pharmacy again no script, they ask what am i looking for, tell them steroids, i'm supposed to take day before,day of,day after for allergic reaction. they say you have 3 refills on the steroids you had before. thank god, so i have my steroids no thanks to drs office. next time i see dr i am getting my scripts before i leave.

it's funny if i call after hours i have no problem with call backs, but heaven help you if it is during office hours. i know they are busy,but here it is monday and still no call,no script.

i took my first steroid at 8 this morning.

Finished my last taxol today so I am celebrating that milestone.  I start AC in 3 weeks so I am hoping to recover a bit in the meantime.  I was supposed to have an MRI today after my chemo but the contrast power injector made a loud popping noise and died as they were testing my IV.  They couldn't move me to another MRI machine because I have to be on the same one each time as part of the requirements for the study I am on.  I'm a bit bumbed because the holiday week has them all booked up so I have to go at 7am next Monday so that the results will be ready for my appt with my MO on Monday.  Oh well, at least the machine blew before my actual test started instead of at the end of it.  I'n trying to be glass half full about the whole thing.

Anyone else notice that typing is kind of tough when you are hyped up on steroids?  I get all sorts of extra letters.  And I can't concentrate well enough to proofread very well.  The former librarian in me is horrified!

Congrats to all who are finishing up their chemo.  We have all worked so hard!  I won't be finished until the end of January but I am happy that I get a few weeks off.  It's the little things.

Rockym -  Thank you for the perspective builder - I am alive to celebrate another Thanksgiving, even without my tastebuds.

 Belleeast -  I sympathisize with your phone misadventures.  The worst part is that you feel like such a pest even when the reason you have to keep calling is that they keep messing up.  Hang in there!

Raebob - I hear you about the fatigue.  I am also surprised at how hard it has hit me.  I used to be in pretty good shape but now I sometimes have to lie down after going upstairs.  I try to go out for walks with my husband but I feel wobbly after such a short time.  I admire all of you guys who are still working  and also who are able to get in your normal exercise.  I just couldn't do that.

Kimberly -  Hang in there.  I hope you are feeling more human and less like road kill.  SEs just...well you know.  Please know that you can vent here as much as because we know how you feel.  I hate to let my family know some of the stuff because it would just make them worry and that wouldn't help any of us.  Anyway, gentle hugs to you.

Take care everyone!

PinkShirt - Congratulations on the half-way mark.  That was a long haul you went through.

Belle - About prescriptions, to make a long story short, I had some problems with MRI and EKG test orders not being at the testing facility, and prescriptions orders not at the pharmacy.  This happened right around time of diagnosis when I was at the height of anxiety.  I had such a hard time getting that prescription through for my thyroid medicine,  Calls to the pharmacy, calls from the pharmacy to the doctor, calls to the doctor.  At one point the doctor's assistant actually called to confirm it was sent (when it wasn't).  They gave me this call right before they shut down early for the weekend, like 12 on Friday.  Went to the pharmacy and they said nope, next time confirm with us instead of your doctor, had to call the doctor on call for my doctor at that point to actually get the prescription and he would only give me a week's worth.  Unbelievable.  I also had big trouble setting up my MRI because the orders hadn't been sent through.  I also had trouble with getting pre-surgical chest x-ray.  Oh, for the old days when you had the prescription in your hand.  They say it is more effiicient to send prescriptions electronically.  Pfhhhht.  Efficient for whom?  It sure is a big merry go round for the patient when they don't do through.

Ahh, Well it is has been running a little quiet on the boards.  I figure a lot of us are better or a lot of us are pretty sick.  I get this thing post tx where it is extremely difficult to walk or stand from back pain and leg pain (much better on the Percocet).  I judge how bad it is by the fact that I skipped the shower on Sunday, and I never skip a shower.  Abdominal hystectomy, shower next day.  Double MX, shower next day.  With chemo, it seems like there is one peak day post treatment each cycle that is so bad, I don't even think I can stand up for 5 minutes in the shower. 

Well, my peak day is past and I am feeling better, comparatively.  I did get neuropathy in the feet this time which was new.  It feels like my toes have been frostbitten, numb.  I had a hard time curling my toes and had this strange sensation that when my toes curled, my toenails were still going straight and the toenails were peeling away from them (yes, this feeling was after the Percocet, not during).  My toenails don't look like they have taken a hit from this, so I can't explain that at all, except that it all feels weird from the neuropathy.  So far it has been numbness and not pain, and the numbness does seem to be getting better today.  Hooray.  Hopefully the constant bloody nose and twitching eyes take a hike soon too.

Getting blood work tomorrow and from that point deciding on whether to join in Thanksgiving dinner celebration or not.  Usually one week post tx, my white count is extremely low.  I am so sick of sweet foods, which are the only things I can taste when tastebuds are wiped out.  I sure would love a Thanksgiving dinner at my friend's house, just not sure it's worth getting sick over.  I get pretty germ phobic when counts are down.

I am so looking forward to phyllo dough spinach pie with feta, and homemade bread, both of which I have been avoiding because of the yeast and fungus risks while on chemo.  I figure in another couple weeks my system should be able to handle it and I can cook what I please and taste what I please once again.  I can put some spicy food back on the menu with no worries.  I've had to be so careful with the salt it's ridiculous.  I want movie popcorn,.... fragrant, greasy, salty, mouthwatering popcorn at the movies.  Please tell me I can have that again some day.  I'm down 6 pounds this week and have to keep that off because I am still up 4 pounds since pre-surgery (and was 100 pounds overweight then).  I'm trying to up the movement and exercise with taking more steps, but the way I see it, it's like carrying DaintyBAMF (100 pounds) around on my shoulders while I do it, so not so darn easy to carry.  Well, every pound down will make it that much easier to move.

I'll be doing the hair watch.  Maybe santa will bring me a little fresh stuff by Christmas.

OK girls, I need a run down on the side effects from radiation.  I will start in January.  What can our collective brain tell me about that, besides fatigue?  Like we're all not used to that now.  And are the tattoos temporary?  I am due for 5-7 weeks, 5 days a week, starting about a month after my last chemo whicih is 12/27.  What can you tell me?

girlpowerdebbie...I have my last chemo dec 28 and start rads same as you!!!  Let's keep in touch and compare notes.

I have worked at my store the last 2 days in the stock room.  We moved in May and my husband finally got the shelves built so I have been organizing back there..I am so exhausted but it felt great too.  My legs are so fatigued but at least I feel useful again. 

Maggie

Hi sarah, for me the first day of body aches is the worst and I can usually drag myself around pretty well the following day. I don't start feeling myself though for 3 days or so (and the leg fatigue sticks around).  I have been using Biotene mouthwash religiously (5-6 x per day) and that has helped with the mouth issues. Rounds 3-4 I developed this bizarre thing where I am simulaneously ravenous and nauseous. I have been eating lots of scrambled eggs and toast to get through that but it is a very weird SE. Hope you have minimal downtime, but when I am down i just roll with it and let myself be a couch potato:)

Babs- I wish I could say something to make you feel better. I can't imagine losing a child and the pain of that. You are obviously an incredibly strong person to get through that and that strength will help you get through this, as well. I can relate to what you have shared about this experience though, looking in the mirror and wanting your old self back. Hearing the stories of women further along this path than we are give me hope that one day the worst of this will hopefully be behind us and we all will move past this.

Pinkshirt- I will be bringing up the rear I think, since I am breaking for surgery half-way through. I'm having my surgery end of next week or the following week and will then have my last 3 chemos starting the beginning of January, so my last infusion won't be until sometime in February. Overall it doesn't really change the total time-line of treatment, but I am bummed not to get the chemo out of the way before Christmas.

SPCMadi- I had the white tongue thing too my first round, despite using the Biotene, and my doctor said it was thrush and gave me an Rx for trouches (like lozenges) which cleared it up in a day and didn't have the side effects of an oral antibiotic.

Mags- Glad you are feeling good enough to get back in the store. That feeling of being useful and somewhat getting back to your regular life must be great! I had a few good days like that recently, and it was such a psychological boost!

Kimberly- Hope you are able to keep the Thanksgiving plans you are hoping for.

Belleeast- Hope your side effects are minimal.

Kate- I finally made my surgical decision and am opting for a BMX too. Just waiting for the GS to coordinate with the PS. I think I will get anxious tomorrow when I get the official date, but I have to have faith that I am making the right decision for me and my circumstances.  Once I get the date, I will make the plans for help around the house with the kids. I have a part-time nanny in place but will need to coordinate for someone to be here all the time initially since I won't be able to lift the baby.That part is stressing me out but I didn't want to make the decision based on the temporary inconvenience of needing extra help. I'm sure you can relate!

Belle- I am doing immediate reconstruction with tissue expanders. I met with 2 plastic surgeons who both advocated nipple-sparing for my case, and the GS was also on board with this. I still haven't decided on that part of it and won't have to until the day before my surgery. I just got a bunch of data on this that I would be glad to share if it is something you will be considering. I am still weighing the pros and cons myself. One of the PS went over several options with me just to educate me on what is out there, but I am only a candidate for the implant reconstruction.

Belle- Yes, hopefully you don't need to worry about it and your BRCA comes back negative. Your guess was right- I don't have the fat necessary for the other types of reconstruction. I guess that was an ego boost- in the midst of the wearing comfortable, cool clothing without regard to fashion, the baldness, bad skin, etc., from the chemo and my postpartum body, at least I had 2 plastic surgeons tell me I don't have anything to lipo to graft. LOL I have to look for the little positives! The diep pictures looked aesthetically amazing, but I have heard the mastectomy recovery without reconstruction is relatively easy. I did give it some thought myself too just for the easier recovery and less pain. I also know that the plastic surgeon said that he can be involved in the lumpectomy if necessary to make that prettier depending on the tumor to breast ratio and positioning.

Hello to all my Chemosistas!

My stye is improving, but the stupid goo ointment makes it hard to read anything, hence my computer hiatus. It's still there, but really small AND best of all, I didn't have to skip my chemo this week. Yeah, I'll fell crappy for Thanksgiving, but I'll be good for Christmas and done for the new year!

I'll have to catch up on everyone's posts in a few days when I'm done with the goo. I hope you all are doing well.

Happy Thanksgiving.

Much love and gentile hugs to all,

Kelli 

sarah, hope you feel better soon, i have thrush, white tongue, dr gave me script for pills 1 day for 7 days.

had first taxol yesterday, major diarrehea, note to self where a pad in case you cough, sorry if TMI. lol

khegidio, hope you have no SE this time, drink that water,girl! which reminds me i better get to drinking some.

i know how you feel about the hair, i've been down about it,too. they say wear eye-make, earrings, uhh who has the energy to do that. i wasn't a big make-up and earring person before,have 1 ear that is a b**ch to put in and i'm tired of fighting it.

scarfs, have plenty to choose from, don't like how any of them look anymore, oh well i know i'm just depressed.

Absolute neutrophil count tanked out (0.4) on bloodwork today, so no Turkey Day at friend's house for me.  She will be bringing me a plate (lives 2 blocks away), so I will still get a great dinner delivered.  I feel like the boy in the bubble.

Crap Kimberly that sucks:(  Even with Neulasta you are tanking, hunh?