March 2012 chemo

Bit of heartbreak tonight when I talked to my kids about the fact I can feel my hair letting go. We've been talking about it, I wanted to keep it on their radar, sometimes joking about it, but I guess to know it is really really happening is sad... For me too obviously, but I wonder if they worry I won't be their mom without my big curly wacky hair. My son cried, I was so sad, my daugter said she wishes I never had BC....sigh. Me too.

sending out hugs from Ohio tonite to all of you!

Hugs to you, Sissydi!

Sissydi- wish i was closer, we could ne chemo couch potatos together!  I hope you feel better!  If there is anything I can do let me know. 

Mas- hope all goes well tomorrow! 

Wow - gone for a day and so many posts to read! I can't respond to every post but know that I read each one and smiled, understood, agreed, or was saddened.

Sissydi - (((hugs))) I have 5 dear friends who have been supporting me since my diagnosis. Like yours, they were very active in the beginning but have slowed up as this journey goes on. From the beginning, they told me more than once that if I needed or wanted anything, I should call them. They wouldn't know when or if I could use their help and they didn't want to interfere with my recovery from tx. I am learning that we BC warriors are strong (with weak moments) and sometimes its difficult to ask for help - we think we can do it, or we think our friends should "know." Most don't. Give one of your friends a call, tell her you're down and ask her to come over. She may surprise you. Let us know!

Caitlin - so sorry to hear about the possible additional node involvement. Be sure to keep us posted.

Michelle - love the chemo-sabe!! I may have to share that with my clinic. Thanks for the chuckle.

Corky - I love your upbeat attitude and the way you look at this BC crap. I try to take something away from each of your posts.

about brain hiccups - what a great way to describe those moments when thoughts disappear...I know exactly what you mean!

My good moment from yesterday - it was Tx2 A/C and everything went smoothly. My nurse, NP and other staff loved my buzz and said I should keep it short after all this is over. They actually made me feel feminine and "normal."

Best wishes for those who had tx yesterday and those going today. May your SEs be minimal and good days be many! We can and will do this!!

Morning all! Day 4 TX 1 and feeling cruddy. Loss of appetite kicked in last night had to force dinner down. Little achy, but mostly just tired. Think I'm going to turn up the electric blanket and go back to sleep for a while.

Kim-so glad you're having a normal day! Enjoy it! We need to embrace them when they come.

Lisa-you're still feminine and normal! It's going to take more than a buzz cut or baldness to take away who we are.

Have a great day all, going back to sleep for a while!

Morning all...can't seem to get going this morning...bad dream last night that I do not want to put into words.  I know it is just a manifestation of fears but still it was real to me   Cried telling DH about it this morning and then (and this is actually funny) I was like "oh no, you aren't supposed to tell a dream before breakfast or it will come true!"  He just shook his head at that point and left for work.

Karon - boo on the count so is the neutrophil a seperate number than just the white count?  I have never gotten a specific count for netrophils, just my WBC.  Just curious.

Katy - sorry for the sad conversation.  I am doing the same with my kids, we talk about things, just joke about it matter of factly but then there are moments in there where bam, it just hits you (and them.)  Or we will be watching TV or something and there will be a show or commercial about cancer and you almost feel everyone not looking at each other until the moment passes.

CAYH and January - good luck to you today and others starting TX. January, I feel the same way about my hair - I got it cut shorter and it is so much easier that I may not ever go back to the longer length I had!  I even feel like my wig is too long now!

Caitlin - sorry for the node   hope you are feeling better today after your dance with the devil.  My nurse told me that the MO requested they start calling A the "Red Warrior" (rather than the red devil) and she told her "we don't call it that, they (the patients) come in here calling it that!"

Oh and Caitlin my DH says that he shaves his in solidarity - but he has shaved his head for the past 5 years so that one doesn't work!  My brother is rapidly losing his and buzzed it down short but I told him head looks too weird so he could keep the little he had left!

Sissy - (((HUGS))) - I will echo what others have said.  PM me anytime.  I will regale you with tales of things my kids and cats do.  As you can see from my posts here I can "talk" in typing for indeterminate periods of time.

 Ok, I am already feeling better just for "talking" here so far. I think I will get up and clean the kitchen. One last thing... I have decided not to go to my youngest DD's DI Competition Saturday (a school thing) because of my white count being lowish and just the sheer number of kids - it is a huge thing and you go watch the competition for like 10 minutes and the rest of the time is strictly "hanging around"  I just thought it would be best for me not to be around that number of school kids all day so DH is taking her.

So, for whatever reason, I guess as a consolation prize for me not going,  I was thinking of letting her have her friend spend the night tomorrow though.  When her friend is over, they go to her room and pretty much, eat, sleep, play back there so it isn't like she will be around me much.  I asked her mom to make sure nothing was going on and she said she is fine as far as sickness but does have allergies and a swollen lymph node - I guess from the allergies as well. (She wanted to tell me everything that was going on bc she understand about chemo - her mom had undergone it last year)  Opinons?  The child will not be hugging on me or even using the same bathroom so that should be ok, right? (and yes, I am aware allergies are not contagious)

 I never ever know when I am being TOO crazy about things because I do go overboard.  Like I have to wipe my counters down 3 times with Clorox spray bleach after I cook with raw meat (even if only the package touches the counter).  It has to be 3.  But that is another story....

Karri: your posts always lift me up...you just make it feel like real chatting and that's so nice and comforting.

I've had kids sleep over here since I started, after about my day 12 or so...and yes I am wiping every surface with disinfectant wipes as well...peace of mind. It's good that the other parent understands about the germ issue.

Caitlin: I may arrange a little buzz ceremony too, when it's time...my hubby also offered to shave his down...I guess it helps them, too to feel there is SOMEthing they can do, aside from watch us go through this..Also, the kids felt better this morning and gave me lots of hugs for courage befroe they went to school.

Karon: do you have to stay in "isolation" the whole time, or just the middle week?

many hugs to all today,

kitb04 and KatyCB -

Something I never knew before this - yes, the neutraphil count is separate from the WBC; my understanding is that neutraphils are a component of the WBC, and make up the largest part. For instance, my WBC was 0.8 when my neutraphils were 0. Both those numbers are totally pathetic, and give me virtually no defense against anything I might come up against. 

As to how long I have to stay in "isolation", I won't really know whether the counts have come up until I go for the next chemo treatment - they will check counts before they determine if they've come up enough to go ahead. For now I'm listening to my body, and today I woke up feeling better, so I'm assuming the numbers are starting back up. I still am going to use extreme caution in being around people - wear a mask, limit my outside the house exposure. It's a PITA, but a better price than winding up in the hospital.

At least today I feel like making a list of things that I need to do; haven't even had the energy to make a list, much less do anything on it! One day at a time.

Karon

Karon - that is what I thought about that being more of a "sub" area of the white count...I have such a fear of germs in general that my SIL who works at a lab is always saying I just need a HAZMAT suit.  I am going above and beyond even with my 3.6 total WBC.  I wash my hands constantly even just in the house.  I hope you find some energy to make that list!  On another note, I see you are in Tulsa - we very nearly visited the zoo there earlier this year but I twisted my ankle the day we were to leave so we went to Branson instead...you are probably about 4 1/2 hrs from where I am.  Getting too hot now for that kind of trip.  I am a weinee when it comes to summer.

Katy - awwww thanks...I really don't like to talk (like on the phone) so I don't know why I type so much...its just easier I guess.  Maybe I should start writing a book instead of just posting on the message boards all day, lol!

Thanks all for the input on the sleepover - I think I will just wait til tonight and make sure the other little girl is feeling ok before I make a decision...of course, then MINE has to clean her room so I have to give her some notice - lol.   

Ok, I am REALLY going to clean the kitchen now.  I so hate unloading the dishwasher.  I don't mind loading it but hate to unload the clean ones.  I should be grateful I have a dishwashwer...see there I go again...

Diane -- good luck -- many of us will still be going through April -- so stop back and say hi!

Sissy -- I too, am grateful for social media. Have wonderful friends... but no one can truly know what its like unless they go through it.  It is amazing to connect with women from all over the world as we help each other along these dark days back to health!  Sending out warm hugs to all from unseasonably warm New York.

Catherine... my brains has been having visual hiccups. Anyone else? Is it because I'm an artist that I notice this? I see things wrong. Its like I'm hallucinating. Its happened a few times after each infusion. 

Masserz -- in case no one posted instructions for posting picts yet -- its like this:

1. you need to upload an image somewhere on the internet -- I use photobucket and my blog. I bet you can use facebook too. It needs to have URL address. I don't think you can upload directly from your  computer to these forums. (someone correct me if I'm wrong!)

Facebook and photobucket have options for making photo albums private! 

2. Click the image icon that looks like a little tree

3. in the window that pops up, you need to paste the image URL. You can leave the other fields blank. 

How to copy an image URL: right-click on any image on the internet, and select "Copy image address" or "copy image URL"

Hope it works. I'd love to see photos anyone wants to share! 

I'm so confused. I called my onc to ask why Herceptin doesn't seem to be a part of my treatment planning. I was initially told I am ER-/PR-, HER2+. Well, the nurse just informed me that because I'm only "1 +", I'm considered HER2-. She said that they only say you're positive if it's HER2+++. I'm so confused. So she said that I'm actually a "triple negative", which I don't understand. Does anyone have any insight into this?

Hhhmm, this percentage thing just doesn't go away. It's not enough to be told it's a black & white issue, because obviously isn't. But I don't know how to get to a good answer. It is also a difficult one to google - how do you phase it?

Shera, you make me laugh. There are so many ways you can get lost in that one! I am a visual artist/educator too. I told my friend the other day that it feels like I've been peeing out D-76 (anyone who has been in a photo darkroom know what I am talking about!). Then it just felt like my tongue had been bathed in developing chemicals. Blech.

Since you are an art person, I think you should make your own script and prescribe something equally hilarious to the physician's assistant. Grins.

I did start a new topic for March/April TC chemos if any of the newly starting chemo people are interested, well, anyone is invited of course! It will probably just be a new version of exactly what happened on this topic, but for everyone new it feels like it's the first time in the history of the world that someone has had to have chemo......

nsmolen - that is interesting - I know that my MO said at my first visit that I was HER2+ according to the initial pathology but that the other test (FISH?) would be done to make sure...but I just glanced at my path report again and it says HER2+: 3+ strong.  So I guess I am?  Yet I have yet to receive Herceptin either. 

Let us know what you find out.  I know with me, it is just easier to wait til I can see the MO than try to ask questions through her nurse.

Good afternoon ladies! I've missed a couple of days on this thread, I think. I've been sooooo tired (guess I should have expected that, huh?). Sorry you're in seclusion, Karon. That's no fun. I'm on Day 8 after my first A/C. I'm afraid they may seclude me too after I have blood work next week. I went into this with a hemoglobin count of 8.1, so I was very anemic and had no clue. I don't know how this will affect my total counts but my MO was concerned about it and put me on an iron supplement (I won't even tell you about the SEs I'm having from that).