Starting Chemo, November 2013 Group

Tonilee,with whatnot are dealing with, what happened to you today (even if it was a waste of your time) is very upsetting and not trivial.  So please feel,free to share with us.  I totally agree with Lisa and Audra.  That PA couldn't answer your questions, and she was too insecure about it to tell you that.  You know more than she does.  My MO doesn't even know that much about my radiation.  I am seeing a RO for that.  Completely different doctor at a different location.  If you can't get into CTA you may want to as your BS for recommendations for the RO.  I find it very condescending when health care providers say things like "cancer wins."  I would,definitely tell someone at the center.

wallet mama - pre-chemo steroids regularly jump my WBC to 22. Crazy stuff!

Almost forgot, I, too have been instant messaging and looking around for our dear friend, Paulette.  Very concerned that we've not heard from her since the MO or BS or someone spotted an unusual area near her brain 

It is NOT like her to go for days or weeks without posting.  Praying she is alright.  Does ANYONE know ANYTHING about her??  Please let us know.

Tonilee, hope today goes well.

Among my pet peeves: people who say to me, "you'll be fine with your attitude." REALLY??? Cancer knows all. It sees all. It requires that we be incessantly cheerful, or it'll get us. 

It sees you when you're sleeping, it knows when you're awake, it knows if you've been bad or good, so be good for goodness sake. Oh you'd better not cry, you'd better not pout...

It's my day 8 after my first Taxotere. So far I had 4 rough days of severe bone/ joint/ muscle pain. It started on day 3 until day 7. The pain was so intense that I could only manage it with Oxycodone (1 every 6 hours). Ibuprefen didn't do anything for me. It was like eating Tic Tacs. Today is a much better day. I don't have to shuffle my feet around anymore, but I developed a rash around my ....wait for it ladies....rectum! Well, swollow my pride, what's with that? It's ranks right there with the rectum pain and the butt boil story!

I took some Claritin to take away that itchy feeling because I also had an itchy wrist, as well, and treating the area with Calmoseptine to calm the skin. 

Taste buds: Taxotere really did a job on my tastebuds. Everything tastes like plastic and my mouth has a soapy aftertaste. I am giving in into my cravings more, eating foods that I didn't eat for a long time like red meat and cheese. I guess that's the body's way of refilling on some important nutrients to boost for instance the blood count.

Tonilee: It may be hard to do at times, but we shouldn't pay too much attention to some people. Yes, they make our lives miserable for a while, but they don't matter what they think about what's going on. I wouldn't pay too much attention to that PA. She was certainly not qualified to answer your questions. I would address this question to my RO. S/He should know the answer better than anyone else. The comment about: 'cancer wins', was really unfortunate, because people who make comments like that don't realize that this fight is a big mental game for us and their role should be the one of support, and not creating more anxiety.

Lisa: I wish I had your MO instead if mine, you can actually email any questions to ahead of time. Wow! I found that my MO was rushing through the app last time so much, that she left a bad taste in my mouth. I felt like my concerns were unimportant to her. Unfortunately, I don't think I should be switching her at this point, so I have to put up with her at least until the end of chemo.

Tonilee, wally, quirky, others: Yay, for your treatment! We are making progress! Taxotere is kicking my butt (literally) and I hope it will continue to kick some cancer butt for all, as well!!!

Pat: The analogy to Santa Clause is coming to town is hilarious! Lol 

I am concerned about Paulette as well, thinking of her often. I wonder what happened to her.

Phebe, jab, ellen, audra: How are you doing?

Has anyone heard about Gayle?

Hi everyone --

Tonilee, I'm so glad you're back posting when you can!  I agree with what everyone else has said:  Whatever any of us posts -- good, bad, ugly, boring, angering, funny, soothing, off-topic, scary, photogenic -- contributes to the collective good of our group.  We need you!

I can't believe what you had to endure with that PA!  It is just unfathomable what some people will say.

I too am getting more and more worried about Paulette.  

Amazon, welcome to the land of butt SEs!  (My boil did go away on its own, thank goodness.  My worst fear was that I would need to go to my primary to pop it, and he wouldn't have been available.  That would have meant his partner in the practice -- the husband of one of my best friends -- would have had the pleasure.  That alone was incentive to do the warm compress thing every hour.) 

Glad you're feeling okay, Lisa.  I hope your Neulasta excursion goes well.

Wallymama, my MO has me take 50mg of B6 twice a day to try to fend off neuropathy.  That would be great if it does double duty.  

Re Taxol SEs...I'm almost 2 weeks out from my last infusion, and I think my painful fingers and toes might be getting better.  I don't want to jinx it, though.  

Fatigue is still annoying unpredictable.  I go walking everyday, then I hang out around the house or do quick neighborhood errands if I have to.  I generally am feeling like myself, just being careful about germs so not going to crowded places too much.  Saturday morning was no different, so DH and I went for a walk, then planned my first "big" day -- an outing of 3 stops to Lowe's, Sprouts, then Target.  Halfway through Lowe's I had to go wait in the car.  What's that all about?  I can't stand for fifteen bleepin' minutes to look at light fixtures without needing a rest?  

Later that day, I had a meltdown like I haven't had in quite awhile.  I was in the kitchen and, as I was reaching to take a calcium supplement, I dropped it in a dirty mucky dish that had been left on the counter.  That little thing opened the door to a big boo hoo rant about everything being such a hassle now.  DH just stood there, then finally said he didn't realize how much I'd been keeping inside.  I don't usually feel like that, so I don't think I'm keeping it all in.  Maybe?  I don't know.   Just sick and tired of being sick and tired, I think. 

I hope everyone has a good day!  All I'm doing is walking and the FAFSA...anyone else doing that for their college kids?

Oh Pat, I will never hear that song without thinking of you again! And oh no! cuz I can pout with the best of 'em, so I reckon I'm sunk. LOL.

Amazon: My husband came in the other day and asked me why I was just sitting in the middle of the bed looking so content. I just smiled and said "I went to the bathroom, and my butt doesn't especially hurt or itchy or anything at all. Today is a good day." He understood.

I don't know how much of it is the taxotere and how much is where I was sick and on first one antibiotic and then another for a total of two weeks, but up until the last couple of days about all I really could eat (and taste) was chicken pot pies and macaroni and cheese. I could taste sweets but my mouth was so continuously dry it was a chore to eat cookies or anything like that. Today it's all pretty normal, so what did I eat for lunch? Chicken pot pie. I've become addicted. Lost four pounds though between one doctor visit and another so I'm not complaining about THAT. Today I can even drink Diet Coke. It doesn't taste quite like it should, but close enoough. Had Taxotere/Cytoxan yesterday though, so I'm sure it's temporary. May have to get my husband to let's stop off for something special on the way home from the Neulasta shot this afternoon. Hmm.

I know people probably get tired of hearing me talk about how awesome my MO and his NP are, but seriously, he's a rock star, and she's amazing. There've been quite a few local newspaper articles about my doc, and all his patients say the same thing: He really cares. He walks on water. When he asks you a question he looks you straight in the eye while you answer and really seems to be taking your thoughts and feelings and opinions into account. He is ALWAYS encouraging while not sugar-coating things. He doesn't just follow typical protocols but is always willing to think outside the box when necessary (hence my 4 rounds of AC, two rounds of T/C, and then two rounds of just taxotere---for whatever reason he thinks 6 total cytoxan are what I needed and so that's what we've done.) His NP is knowledgable, gives out hugs, and really takes the time to listen to questions and concerns, just as the doctor does. They have a mutual admiration society between them, as well, and that's always comforting. I wish EVERYONE could switch to my MO, lol. Poor guy.

Bec: Agree with you 100% about people posting. The more you people post the more I have to read. I'm disappointed when I check and no one has posted here. Post a funny dog story if that's all you got, all of you! It's like a hen party in here.... it's a hen party with a theme but there is NO rule that says we have to stay on topic. (And on that note, I'd like to say that I've been enjoying the Olympics but I'm really glad the ice dancing is over with. Love figure skating but ice dancing just makes me want to take a nap.)

I've had so much fatigue (partly due to being sick) over the past few weeks and I'm so sick of it. Bless my husband for at least pretending to understand; he hasn't grumbled at me for all the things that aren't being done, tho he did occasionally ask me if I didn't want to go out somewhere and "Get your blood moving." At the time my energy level would have gotten me to the car, and maybe back into the house, lol, but that would have been about it. I did at least manage to straighten the kitchen each day---hubby HATES dirty dishes. He'll do everything else, but cleaning the kitchen is his Achilles Heel for sure. I'm hoping that at least SOME of that was from being sick though and I can get back to getting at least a few things done each day and making it through the grocery store without wondering if I'm going to need to take a nap in the paper towel aisle (scoped the place and figured paper towels would make great pillows.) 

Feeling GREAT today though (steroids lol) so it's probably a good thing we're not going shopping...then again. Hmm.  bahahaha!

You know, I think we DO hold it in a little bit, consciously or not. Or..... it's like the fatigue and it's cumulative and we don't realize how many little things have annoyed, scared, bugged, or disappointed us until BAM all of a sudden we're having a meltdown for no especially obvious reason. It happened to me the other night. I thought I was feeling okay, but then our bigger dog made a rather ungraceful leap onto the bed and landed on my ankle with one of her crocodile claws. It didn't hurt much and didn't break the skin, but one would have thought she'd killed me I boohoo'ed so hard. I've gone as much as six months to a year without shedding a tear about ANYTHING in the past few years, but man I've really made up for it since September!  I did used to be really emotional--downright high strung--when I was younger though, so maybe some of it is just the "real" me coming back out again. Husband doesn't seem to mind; he's one of those odd guys who doesn't really feel like he's got to "fix" it when I cry. He understands when to leave me to it, and when to hug me, and when to do silly things to make me laugh instead. It did freak him out a little bit at first when I'd laugh and cry at the same time, but he's gotten used to that now too, I think. 

Luckily for both of us, I don't have many meltdowns. They seem to come in groups and then I'm just fine for days and days.....totally tied in with how I feel physically. The better I feel physically the more likely I am to be okay emotionally. Which tells me that once I'm past all this chemo and radiation and possible ooph or hysterectomy, I'll be FINE again (nevermind the possible side effects of the 10-years-after drug. We'll jump off THAT bridge when we get to it.)

lisa: I agree with you on that we should be posting no matter what to keep connected and informed. That's why I am going to post a pic of those Valentine cupcakes I made with my son that I have been wanting to share with you. They also represent a time when I felt good enough to do something with my son.

Oh man, Amazon, I wish I had one of those RIGHT NOW! And I just had dinner. Steroids, I guess. They look yummy!

We shopped a little bit today and I got some huge throw rugs for my phobic bathroom so maybe I won't have so many flashbacks and bad moments and my showers can be a little more pleasant. I'll let y'all know if it really does help. I may even hang up this giant spare chartreuse window curtain in there, for good measure. Who can be morose when faced with a giant chartreuse curtain, right?

this is my birthday cake. My birthday is today. My husband took me out for supper. It was great awesome supper. I enjoyed my time with my husband

that's wonderful Phebe!  Charming cake and a very happy birthday to you!  So glad you got out and had fun.

Today for the first time I went for a walk and it was a very nice day. I just felt so great and relieve to be outside in the fresh air. I felt so alive no aches and pains except my eyes but it was not intense. I'm going to go for a walk daily till Sunday. On Sunday I'm leaving for my last chemo. Monday bloodwork and seeing oncologist . Then Tiuesday is the big day - taxotere and herceptin. Then on Wednesday I have CT scan. I'm going prepared. On Sinday I buy Emla cream and two hours before blood work I put the cream on my port so when I get the needle I won't feel it. Then on Tiesday I do the same thing  two hours before I put the cream on around my port. I also ice my fingernails and toes with ice gel during infusion. I notice the ones that are affected are my two thumbs those weren't properly covered with ice gel. The tip of my thumbs were cracked and peeled. I just want to share my experience with taxotere and herceptin.

Hooray! After chemo I go for Four weeks of no treatment just to get better! Then radiation after that

I had my weekly visit with the BGC this morning. My OC says that after this round he wants to do a PET scan. It will be 8 months since my mets were found. I think I'm doing better, but I do have a side effect I'm scared to tell him about and I have just tolerated it for the past 7 months. I'm just scared he will change my chemo. Abraxane is so easy and I can function on it.... I just don't want to go back to the way my life was on ACT

Kimmie, I know a  stage IV girl personally who is right now laid up in the hospital on IV antibiotics and IV fluids because of something she thought was a side effect but turned out to be a chronic infection that turned into an a worse infection. Tell your doc everything---including your fears about the chemo change. He won't change it if it's working, most likely, anyway.

You're in the right place, Roareus!  Glad you are venting and so sorry you're in pain.  Can't help as I'm not on taxol but welcome nonetheless.