September 2013 Chemo Group

LHL, 

You can wallow in the suckiness!  You have been through so much -- we all have!!  And its a lot to parent when you are so tired - - and the winter never seems to end!! I hope tomorrow is better!! Put on a movie for the kids so you can rest! 

Invincible Mom Really Tired!  

Hi All,

I'm feeling much better today (day 3 postop).  I take my pain meds right on schedule and I think it's helping a lot.  I set a timer on my clock to remind me.  Today, I plan to walk a little and move around the house gently.  I'm having trouble with one of my drains holding suction.  It was a problem before I left the hospital.  That drain is very close to another one, but if it quits working altogether, the other will pick up the slack.    I feel crummy, but can see big improvements from day to day.  

Gentle hugs to all!

Kay

Is anyone still having taste issues?  I guess it's not really a taste issue.... but I'm having a hard time finding things to eat that taste good (aside from chocolate...LOL).  I just went into the kitchen because it's past lunch time and I couldn't find ONE THING that I wanted to eat.... so I got an apple.  I don't know if this is a residual chemo thing or a Tamoxifen SE (started that last week).  I'm ok if we eat out, maybe because I have a lot of choices?  But my usual go-to breakfasts of toast, cereal, bacon & eggs... nothing appeals to me.  I was just going to warm up some leftover pizza for lunch and took one look at it and put it back.  What's the deal?  

Southerngirl - I hear you on the hot flashes.  I've had chemopause symptoms since September or so, but the hot flashes have gotten worse (and more frequent) since finishing chemo, and they are 10x worse on Tamoxifen.  I think last night I counted and had about 10 in an hour.  I am right there with you on throwing my hat across the room.  Then ten minutes later I'm cold.  It was bad last night because my son had a friend here and I always wear a hat or wig around people other than my family.  So I was sitting here having all these hot flashes and couldn't take my wig off without getting up and going in my bedroom.  LOL   Ahhhh.... cancer, the gift that keeps on giving!

LOL @ Ignoring My Relatives Today LHL. Me too. My sister (the sister that hasn't been here for me at all and has been the worst part about having cancer) and I had a blow up today. She and my other sister that live here got together yesterday. They were supposed to get together with me and my sister from SD that we haven't seen in 3 years but instead they went behind our backs and arranged  meeting. We had asked that they would come to my house instead but it was excuse after excuse as to why they couldn't. Well, my transmission is messed up in my truck and it is going to the shop tomorrow (right before I head out to surgery) so I can't really go out of town. I posted something on FB about being upset about things (without posting any details) and my sister decided to weigh in and tell her side of the story. She is a pathological liar and said a whole bunch of half-truths (like how I missed her daughter's graduation and never apologized for it when in fact, she told me that I couldn't go because I had my hair dyed blue and how she helped me out when I first moved to KS when I was actually helping HER out when I moved down here by babysitting her kids for her for like 18 hours a day free of charge AND paying her rent (living in an apartment she had). Anyway, I think I am totally done now. Just a really crappy thing to deal with the day before surgery. I feel badly for my sis that is down here too.

I need prayers/healing thoughts! My throat is getting sore! I am hoping it is from crying all day. They said no surgery if I have a sore throat because of the risk of infection. I am already almost 9 weeks PFC so it can't be put off any longer! Plus, my sister won't be able to stay much longer than the 2 weeks she is planning on staying. Who knows how long before they can get it rescheduled when dealing with two doctors. I am finally over the cold that I had. I don't know why I keep getting sick; I am still being as careful as I was before. I do know that my white count is down still though. 

My guy is absolutely amazing. He went all out and probably spent a fortune last night. We went to a nice dinner and then got a hotel room at one of the really nice hotels in town, He had all kinds of stuff set up at the room before we got there: music, champagne (we decided to save it for another day), chocolate covered strawberries, mood lighting. He really put a lot of thought into it. I was so nervous lol; it's been a long time. It was really nice though, to have that one last time. Maybe we are rushing things but it felt right. I have had feelings for him for a very long time and I think he has as well. Plus the circumstances of life right now and my thoughts of life is just too damn short. I cried once and he held me and calmed my fears. At any rate, I am glad it was him; I'm glad he was the last. I plan on spending the rest of my life with him so I am glad that I got to experience that feeling with him at least once. 

I prepared my sister-in-law for the event that she will have to tie me to the car when we go to the hospital tomorrow. I can see it happening. I reeeeeally hope that they give me something as soon as they take me back. More so, I hope I can even have surgery =/

Wow, I am behind.  Sorry in advance for anyone I miss.

Alfranco, those rads will be in the rearview mirror before you know it.

Art, How's Nat feeling?

KJ, I was not able to take a really deep breath for a bit after BMX.  I am now though.  I don't remember how long it lasted.  I didn't notice any difference with burping.

Cheryl, Happy Anniversary!  I hope you are feeling well enough soon to celebrate a bit late.  Hooray on final chemo this week.

Cougar, The sentinal node injections were no worse than the other times I was poked there.  Not fun, but over quickly.  i was chatting and joking with the doctor, so it really did not bother me much because I was distracted.

Betterday, I hope your pain decreases!!!!

Kay, Glad you are healing so well.

Michelle, Some days I crave certain things, and other days I can eat about anything.  It varies.  I have been very hungry though.  My hot flashes initially multiplied tenfold when starting tamoxifen, but since then, they have decreased significantly.  I hope you got some you time this weekend.

Audra, I hear you on the new, more laid back me.  I have been striving for that.  More on that below!

Mama, I hope all goes well with your surgery tomorrow.  I am so happy for you that you and your man had a great night.

Other than when I got really drunk before chemo started and shaved my head (along with 24 of my coworkers) I have not drank.  In fact, I rarely drink...like a drink or 2 per year.  Pre kids, I would go out maybe once a month and have a couple beers, but since then, I just never seem to get out with friends much...always so busy with kids and such.  I worked Friday night and the guys told me they were all going out Saturday night.  Other than our shave fest, I have never gone to a bar with my coworkers.  I decided, I nee to get out more, and so I did.  Once my daughters were in bed, I met them out (DH had son and his friend at a hockey game...he told me to go out, have fun, and he would pick me up).   I had such a good time!  I only had 2 or 3 drinks, but it felt really good to just get out with friends, chat and laugh about everything non-cancer, and just generally chill for a bit.  I tend to be a type A perfectionist.  I met the girlfriends of some of my co-workers, and just had so much fun with them all.  No one cared that I had just a ball cap on either.  No stares, no comments from drunk strangers.  Nothing.  Relief!  So, Audra, chilling for a bit (not necessarily with alcohol, which really isn't good for us) and leaving a couple dishes in the sink to get out with friends can do wonders for the mood.  Schedule yourself a night for you soon!  Michelle, the couple drinks, since I have zero tolerance, did make things a little more relaxed for me with DH when I got home as well...I had a happy DH.  

Mama and Kbee, I'm glad you had special nights with your guys!   Good for both of you!

I took my pain pills round the clock today as scheduled.  I think all the scraping that the PS had to do to get my old implants and capsules out has a lot to do with the level of pain I'm having.  It's getting better.  My skin seems a little thick on my left arm which can be an early sign of lymphedema so I've been keeping my arm elevated.  

Forgot to tell you between the hot flashes, wigs, or hats, I've given up and gone topless. To the store, church and everywhere. I need to make me feel comfortable and its less weird than taking your wig of during a hotflash. Lol

Happy Monday morning all!

Thanks for sharing your topless pic Alfranco.  That's a lot of hair in my book!

I'm 4 days post op.  Still need pain meds.  I think all the scraping that was done to get rid of the capsules from my old implants significantly adds to the pain.   I'm so glad I decided to have the implants removed and not replaced.    Today, I plan to go to a local indoor malll just to walk around.

Mamma, let us know if they were able to go through with your surgery today.  I'll be thinking of you.

Thank you all. I got 4 full breast graduations and 5 boosts left. So 9 more sessions to go.  Feeling very tired though.

Thinking and praying of you always.

Well, thank you all
for the input on Taxotere motor neuropathy.

Our doctors are not
all quacks even though it seems so. They wanted to keep her on Taxotere,
even with side effects, because she has specific targeted therapy.

Before we went in for
chemo, we had extensive in vitro testing done. Chemo sensitivity testing on primary
tumor tissue and blood sample cultures showed marked cell death when Xeloda,
Cyclophosphamide, and Abraxane was used. Abraxane was not an option for us,
since not all European countries have it on their approval lists, and
wohoop-di-do, ours in one of those. Paclitaxel had lower effects, but Taxotere
was right alongside Abraxane, and was the best option. Since we finished 4
circles of Xeloda + Cyclophosphamide, Taxotere was the next get go, thus they don’t
want to give up on it.

We went in for a brain
scan to rule out mets that could up the horrible neurological consequence. Good
news? No mets to brain or compression of the spinal cord!

Cue smiles?

Not really.

Mets to posterior rib
ends, both sides, Th8 to Th10. It’s like they are ganging up on the spinal discs
just waiting to pounce. Wellcome to stage IV! Considering the fact that we are,
currently dealing with motor neuropathy and a wheelchair, the idea of a future
spinal compression is just so depressing.

Do I even need to
mention how devastated I am about the mets? Mom is positive en mass. I just
huddle in a corner and cry when she can’t hear me. 

Hi all! I'm 2 weeks post op and doing so much better. I had a low day yesterday feeling sorry for myself, but better today. I am still taking ibuprofen on schedule but limiting narcotics to as needed. I'm more sore than actual pain - stretching of tissues from the expanders mainly. The range of motion sucks but getting better. Been doing those exercises and think I'm good to go for my radiation simulation tomorrow. Fingers crossed that my PS allows them to start Feb 24! 

I'll have to say, I disagree that chemo was harder than surgery, maybe I'll change my mind when both are behind me. Chemo made me so tired a slept through my bad days. Now I'm sore and can't do things but I'm not tired. I wish I had a part time job to do something with my brain! 

And 4w2d Pfc and I see no hair  

Good to hear surgeries went well for simplelife and betterday - let us know when path is back! Can't wait to hear from mama...

LHL- I'm with you. Being a cancer patient is exhausting. I want one day from last summer when I was "normal"!

Kj-I'm not doing the survey because I have no conflicts in sept so pick a date! 

audra - Amazing to talk with a 20 year survivor!!! And triple neg at that.

Babyruth - I can see why you'd want to avoid anything doctor-related during the month of April!!! Good luck figuring out the Herceptin, though. LOL

simplelife - {{{gentle hugs}}} We've all felt exactly like you do. There have been many times when I want to just say "I'M DONE! I'M NOT PLAYING ANYMORE!" You are still recovering from surgery and the drains are a total pain... your outlook is bound to not be the best right now.

Alyon - I'm so sorry about the mets. I'm glad your mom is able to remain positive - that kind of outlook is key! I'm also sorry about the restrictions with chemo...that has to be frustrating when the chemo that will work the best isn't available and the one substitute causes so many problems.

Betterday- {hugs} Hope your "undressing" wasn't as traumatic as you thought. I never had any bandages at all, so I saw myself the morning after surgery in the hospital.

knightzoo - I'm glad you're feeling better and you have decent ROM. I'll say prayers that your rads sim goes ok. I didn't really have much actual pain, it was more soreness, tightness and overall discomfort.

Edited to add that I'm thinking of Mamabear - hope your surgery went well & you are happily medicated and resting!

I'm so tired.  And I'm tired of being tired.  Last night I was riding my exercise bike at 12:30am because I couldn't sleep and then my restless legs syndrome kicked in.  Are you kidding me?  At least my kids were off today so I didn't have to get up early, but we went to the zoo & walked around for 2 hours, then had lunch, then my daughter and I had a dentist appointment.  She got a clean bill of health but I need a crown to replace a super large filling that isn't cutting it anymore.  As if I want ONE MORE APPOINTMENT to go to?  That's going to be next Wednesday.  Blah.  Dentist said he'd rather I do it before rads than after, so here we go.

I'm tired of tackling every day like I'm 100% when I'm not.  I don't know how to NOT do the stuff I'm doing, though.  I guess I could flat out ask Hubby to do stuff (because I know he would in a  heartbeat), but I don't know.... I feel like I shouldn't have to ask ANYbody in my house for help.  I know surgery was 6 weeks ago, but four months of chemo and major surgery and the stress and anxiety and not sleeping...... I'm lucky I make it through the day getting done what needs to get done.  Does anyone else feel like this?

LighthouseLady,

Yup, I know how you feel.  Trying to be strong, brave, and happy requires a LOT of energy.  I'm starting to feel like a hamster in a fly wheel.

AlyonA, sorry about your mom. I will keep you and your mom in my prayers.

Clickchick best of luck on Friday for surgery.

Lhl I feel just like you.