Starting Chemo, November 2013 Group

PatAlameda-

Sounds super fun today!  Glad you had a great group!  I actually had some breast cancer people too so that was a plus for me! 

I have headache already hope it goes away soon, had them do Cytoxan 1.5 hours thinking that would help but apparently not.

jabs- people just don't know what to say do they?  everyone keeps telling me my skin is so gorgeous...all I think is that's all they see since there is no hair and my big cheeks  and I think they do expect crypt keepers don't they?  They act shocked when we are a little presentable..

LOVE to you all and minimal if NO side effects !

Well then, try to keep in mind that they may NOT just be looking at you with sympathy or pity or even morbid curiosity.

They may be looking at you because they themselves went through chemo, and they are remembering, and *empathizing.*

They may be looking at you because they know and love someone who is going through chemo, and they are thinking about what it does not just to the person going through it, but to the loved ones, as well.

They may be looking at you because they are high risk for some cancer or another and wondering if next year, that will be THEM.

They may be looking at you because they have a lump and they've been scared and putting off having it checked--seeing you could be the motivation to go and get that done, you never know. 

And sometimes I think it IS curiosity. My stepsisters asked me lots of questions at our Christmas dinner, and I've never even known them all that well, much less been close to them. Still though, I didn't mind being asked, and I answered candidly and honestly, because my OTHER stepsister, who wasn't there, has already had breast cancer herself, so I know that the two I was talking to have to now wonder "Will it happen to me?" They've got good reason to be curious. 

What I HAVE found out by being naturally talkative to people--not just my stepsisters but complete strangers--who want to ask me questions or talk to me bout it is that its not really pity or sympathy that's making them talk to me. While yes, they are curious, they also all realize that cancer is SO prevalent in our society right now that they ALL feel at risk and like it's quite likely to happen to them one day (and it is!) and they just seem to have a lot of awe and respect. So yeah... I talk to 'em, because if I can do that and show 'em that I'm just an ordinary person going through a pretty rough patch of life and not some kind of superhero, then MAYBE they will get over that fear of having regular check-ups and investigating those scary symptoms.  Who knows, I MIGHT even save a life that way -- and then I WOULD be a superhero, right?

Gosh, lisa...every time you post, you amaze me.  Thank you for sharing your other perspective on things.  While I've thought much of what you stated, I've assumed people just feel repulsion or pity or fear when they look at me with "the look."

Perhaps that's projection on my part, ie: me projecting my current feelings about MYSELF onto others.

I gotta be honest, ladies...I really dislike what I look like right now...lopsided, really pale, gaunt, weak, BALD, hunched over, thinning brows, dark circles and bags under my eyes...uggggghhhhh.

Doesn't help when my husband states at the dinner table (when I lift one of my caps, say to scratch my head), "Toni...put your slouchy cap back on your bald head...I find it difficult looking at you without any hair."  Sigh.

As a side note, OMG...it is INCREDIBLE how COMPLETELY BALD I've become almost overnight.  And WOW...did my scalp HURT (still does) as I lost the majority of my hair within 48 hours.  I gotta get a "new" photo up in my avatar...I like seeing the current photos of everyone!  This is who we are...

Oh, Toni, to throw a "southern" and very sincere expression at you, Bless Your Heart!

If my husband said that to me it would break my heart!

But you know, I'm gonna give your husband the benefit of the doubt for a moment and suggest that *maybe* his "revulsion" is really fear; maybe the baldness is just too much of a reminder of how scary cancer is. Maybe.

Or maybe he's a jackass, lol. I guess it could go either way.

You're not alone in disliking how you look though. My eyebrows are okay so far, but I never had much in the way of eyelashes to start with. I have no boobs, so I'm flat as a pancake, overweight, all my front teeth, top and bottom, are fake, and with the mouth sores I've had lately, some days I have to walk around the house with no front teeth in at all. Plus bald, of course. Told my husband earlier that "I look like I'm packed for a trip and am stowing the bags under my eyes."  Was sick last week, plus my RBC is low, so I'm pale as a ghost...

I think I just figured out why no one said "You look good!" at Christmas. LOL.

Seriously though, sometimes it depresses the hell out of me because I have no good way to look GIRLY. I've never been a "girly-girl" anyway; I've mostly run around for years in sweat pants or jeans and big comfy tee shirts, but I COULD, because I had the boobs and my long wild mane of red hair. Now I got....nothing. It DOES get to me sometimes.

You tell your husband that this is the hardest time ever for a woman to keep up her self-esteem, and that if he can't say something complimentary, to not say anything at all.

I just lost all the typing I did on chemoland.  

It is true you really learn who you can count on when we find ourselves in this situation.  A friend from high school who I haven't seen for 29 years has been sending me gifts and texts.  Another friend texts me every day, which helps me feel less isolated.  I don't want everyone to think my entire family is in my corner.  I am estranged from my brother.  He called me when I was first diagnosed, but I haven't heard from him since.  Not even a card at Christmas.  Not even cancer could make that miracle happen.  So I have to mourn the loss and move on.  I can't let that dysfunction get in the way of my own recovery.  I have to accept him for what he is.  I think that is another one of the stresses I have.

Also, Tonilee, I never bring up my deepest fears to my family, because I know they can't handle it.  I can't even handle it, but I have to be able to deal with it.  Your sister might jot be able to handle it.  My husband is the only one I can talk to about these things.  And oh, I won't let him see my bald head.  He has asked to see it, but I know he doesn't really want to and I can't bear for him to have hat image of me.  That is just me. I know that.  The deep things, I feel can only be discussed among us on this board or with a therapist.  No one can really get it unless they have been in our shoes.  That is the isolating piece, but that is why I am so grateful for all of you.

Also I just dropped a small anti-nausea pill and apparently my bed ate it. I can't find it *anywhere.* Gah!

twice I tried to text but I kept making mistake. Just when I'm halfway through texting , I lose it. I'm tired from all that walk and now I look like a baby. I have a partially bald head but I will wear my bonnet.

The ladies here are awesome and I thank you from the bottom of my heart!

(((lisa)))...I again am in complete awe of the things you say.  I don't know how you do it but you seem to have a real grasp on life.  Wish I was more like you.  I know you will succeed at whatever it is you choose to do, once the treatment phases of your bc are behind you.  It's kind an exciting thought, no????...that is, giving ourselves "permission" to make changes in our lives, take chances, have new starts.  Your husband seems like a fortunate man to have you in his life.  And I completely understand about the teeth, I really do.  We ARE odd creatures, us women, aren't we?

But I think men are even odder, even worse-lololol.

As an aside, the part in your posting about your drains made me chuckle (for the first time in a while).  The comments about the drains brought back memories of my April 2013 bariatric surgery in Tijuana.  You know I was in a Medical "Hotel" for the bulk of the recovery, so I had to manage my own Jackson-Pratt drains ('cause I was all alone...no one would accompany me to Mexico...so, I went alone...was that determined).

Anyhow, I had funny, happy thoughts of trudging to the local Tijuana Walmart to get my dressing supplies, my Propel water, my other personal needs, etc.  Then, after my daily shower, I emptied/redressed the Jackson Pratt drains/surgical wounds every day 'til the surgeon pulled the damn things out...gosh was THAT a relief...those things HURT after a while!

Thank you, smrlvr.  What you posted makes lots of sense.  I'm done with other people/family members and their emotions for a while 'cause all of it is making me feel sicker

phebe...you look cozy and comfy, warm in your photo!  I LOVE the photos.  Please keep them coming, everybody!

Thank you for everything, everyone.

Good night.

@Bec - after pondering your question of "why do they call it a hot FLASH" whilst sleeping on it --helped out by the "may make you drowsy" effects of ativan, klonipin, and pheragan(sp?) AND zofran (bahahaha...it worked, I didn't barf) I think I have a potential answer:

They call it a hot flash because the chances are high that a woman experiencing it will do the INTELLIGENT thing and simply rip off all her clothes and run out into the yard (in winter) or shamelessly straddle the nearest air conditioning vent (in summer) thereby flashing anyone and everyone within view.

Phebe you are so cute, and you have an infectious smile. I can look at you and tell that if you were my neighbor I'd just hang out with you and talk to you for hours and it would always make me feel happier! 

OMG Toni there is NO WAY I could have handled my own drains and lived to tell the tale, so now I'm in awe of YOU! There was just something about the drains that kept me completely weirded out for entire time I had them. I was also incredibly grossed out by the fluid lol, especially the sound it made when my husband would empty it into the container. And the occasional *thingies* in it OMG. (Runs for more anti-nausea meds.)  Rather than do all that myself I think I'd have just laid down and died. 

HE on the other was fairly fascinated by the entire process---he even SMELLED the fluid to make sure it wasn't smelling infected or anything. Even decided that if we could figure out how to afford it (and I don't know how we can,) he would LOVE to go back to school and become a nurse!

This is the SAME MAN who *cannot* handle a raw chicken, or separate ground beef into patties, the SAME MAN who, when our little dog managed to split her dew claw a few months back on a Saturday night when no vet was available, could not even WATCH while I checked to see how bad the wound was and ascertained that I could most likely pack it with flour to stop the bleeding and she'd be okay til Monday. The EXACT SAME man who could never handle "seeing anything" when I was on my period; didn't even like to hear about the details. LOL!

 But he handled those drains and my wounds like a champ, and I never got any sort of infection at all-- my surgeon was impressed! I actually think husband may be a little disappointed that my chemo leaves him nothing much really to do except sit by and be supportive.....he actually said one night "You know, I sort of miss those days when you were completely dependent on me...." all wistful-like. LOL.  I told him to cheer up: I've probably got an oopherectomy and very possibly a full hysterectomy in my future, so that should give him some happy days again. :P

Had a busy couple of days so I've just been catching up with everyone. Christmas was really nice around here, everyone came over here and wondered why we didn't have sandwiches and salads every year. Post chemo blood work yesterday. WBC starting to get pretty low, but the MO doesn't seem concerned about it yet.

Audra, when they fixed my port they put an antibiotic in the IV and the WBC was up the next day. Maybe they do, at least in the short term, raise the count some. How you feeling today after yesterday's visit?

Lisa, I can't tell my family everything I'm feeling either. My dear hubby would just freak. And I can't get him to understand that just because I seem down, or am actually crying, that it doesn't mean anything is wrong. He just wants to help and there is really nothing that can be done. Just another fun SE to contend with.  As for helping me with drains or anything when the time comes, he will be helpless. He can't stand to see me (or the dogs for matter) hurting. He can't even take them for their shots. I may have to enlist one of the sisters for that.

Smrlvr, I'm sorry that you and your brother are estranged.My sisters (3 of them, 2 older, 1 younger) and I for the most part aren't exactly close. We are so different, that if I didn't look so much like our mother, I would swear that she'd been given the wrong baby. My hubby says I'm the "Blacksheep" of the family. That being said, they are all tripping over each other to help me. In this family, it's family first, even if I don't really like you, I love you and that is that. I would like to be closer to them though, maybe this will help us stay closer in the future.  

Bec, hope you got a little sleep last night. Maybe a little wine at night would help. I just don't seem to have the taste for it right now. For my 35th anniversary with my company I got a gift catalogue and I chose a 48 bottle wine chiller. Now I have a cooler full of perfectly chilled wine that I don't want to drink. Sigh a big sigh. Not that we were ever really big drinkers. But a glass of wine once in a while with dinner was nice. And I've always loved red hair (not that mine was/is). There is a lot of red in my ex's family and I so hoped that at least one of my girls would have red hair. But alas, they didn't.

toni, hopefully Lisa is right about your hubby. Maybe the bald is just too scary for him. It does make this all seem much more real than before we lost it. If he doesn't see that, perhaps he can still convince himself that you are okay. If it wasn't for the bald, all the other SEs could be explained by a nice case of the flu.

As for SEs, I'm getting randomly queasy. I'm fine, then boom, I want to go throw up. I haven't yet, but a couple of time I really wished I would. Strange, since it's been 10 days since a treatment.

Phebe, perfectly normal to be afraid of dogs when you've been attacked. My older daughter got mauled when she was 6 and she doesn't want to be anywhere near large dogs. Or really any dogs. It's a shame though, because my younger granddaughter wants a dog so bad.

Okay Ladies, I once again need your wisdom!

I have been grounded by my Doctor and hubby.  My WBC is low, 1.2.  1ANC is 0.6 and Hemoglobin is 10.  I have been stuck in the house since last Friday.  I was pretty out of it for awhile, couldn't get off the couch however I am feeling better now.  I did have the Neulasta shot the day after Chemo and it always helped, just not this time.  I have to avoid public places, crowds and of course sick people.  Also have to run in to clinic to leave a urine sample.

Has anyone else had these low counts?  Doc said to eat lots of protein so hubby had been making me steak and eggs, malted milks and so on.  

TY

Pam 

While I know I would love hanging out with pretty much ANYONE on this forum, each women comes through as so special, wonderful and unique. 

lisa...your sense of humor is the BEST...it is dry, spot-on, very funny (IMHO) and well, just FUNNY!  And you are so thoughtful, all the time.  Would LOVE to chat "offline" some time (as I would love to do so with anyone out here, some day perhaps).  BTW...regarding the Tijuana drains-lolol-you do know I'm a nurse, right?  So, PLEASE don't give me too much credit.  Your husband sounds like an absolute sweetheart and a real trooper.

audra...you are so sweet, as always.  Even when you're not feeling great, you always take time out for others.  Wish I knew you better, too.

ellen...your easy-going manner and sense of calm amaze me.  Believe it or not, I always feel super-calm when I read your posts...and you are funny, too (can you tell I love humor...as an aside...Woody Allen and I share a birthday...December 1).

wallymama...I can appreciate all of what you said.  I'm happy your holiday went so well for you.  Sounds like many of us are in a similar spot with family.  You really made me think (as have so many others) when you wrote "I cannot tell my family everything I'm feeling, etc..."  While I know so many of us are in a similar spot, perhaps I've shared too much with my sister and doing so has been too hard on her.  Thank you for sharing your thoughts.

pam...been worried about you and wondering where you've been...was concerned 'cause I know you've been quite ill since your last chemo.  I'm by NO MEANS an expert on any of this stuff 'cause it's all new to me but your counts are quite low.  I say REST, REST, REST...give your body time to turn around.  The high protein/good foods list that Melrose posted several pages back CAN help restore the counts...that and time.  I think it's also best to lay low, get your fluids in (high protein shakes, non-soy based if possible) and keep away from crowds and/or sick people, for sure.  Please feel better!  I've missed you!

phebe...if I understand you correctly, you are trying to change your "avatar" photo, that is the little photo that appears on the upper left-hand corner along with our names locations, joined date, etc when we post?  Is that so???

If that is what you'd like to do, this will work:

1) Starting at the Breastcancer.org Home Page, on the upper right-hand corner, click on "My Profile"

2) Once on the "My Profile" page, click on "Settings"

3) Once on "Settings," scroll down the page approximately halfway until you see the word "avatar."  Your current avatar is blank, so you will have a little blank square with the word "no photo" over it and the word "edit" right next to it.  Click on the word "edit."

4) After clicking on "edit," a gray line will appear with the word "browse" next to it.  Click on the word "browse."

5) Clicking on "browse" will open up various files that are on your computer's hard drive.  Now, I'm not sure how you inserted your recent photos from either your computer or a Smart Phone to breastcancer.org.  But the photo is obviously some place where it can be located and "imported" to BCO.  Find the photo file again...however it is you did so the first time. 

6) Once your computer "recognizes" or "finds" the photo file you want to display in your profile, clicking on that file or that photo will put the file name in the long box nest to "browse."  Once the file name is in that long box, click the purple "save" button. 

7) Once you hit "save," just back out of the pages and your chosen photo should appear in the little box above your signature, location, etc.  That's how you change an "avatar" photo.

I hope this was helpful to you!

If you need more help, private message me and I'll try helping you work out any glitches! 

as my daddy would have said "moly hackerel" there are a bunch of posts to catch up on!!!!

I hope everyone had a wonderful Christmas . Mine was good tho very tiring!!  I am relieved it's all over for sure...  Yesterday for my family celebration, I decided to forego the wig and just wear a Santa hat...  At family picture time, I was sobbing bc I felt I looked terrible, and all my nieces and nephews just grabbed me and hugged me tight and told me how much they loved me...  Then later on during the day, I just took off the Santa hat and no one even batted an eye.  At one point I got up from the dinner table and I said to my family "I'm so glad that it totally doesn't phase you all that I have a bald head" and they all looked at me and were like who cares...lol...I am very lucky in that respect. 

And I do need to give a shout out to my sister- I was sobbing on the phone to her on Christmas just telling her how mad, angry, and scared I was....  And had just cried with me and told me how rotten and unfair it was....she just said all the right things...  ever ever so lucky.....

Toni- big hugs and love to you!!!!!!  I agree with you that this is a "safe" place where pple truly "get" what we are all going through.  I don't know what I would do without it.....

Pat- I totally dread the next treatment as well and keep telling myself with the next one I will be 75% done!  Your treatment sounds like a hoot and nice that you found some other partners in crime lol

Audra- thinking of you!!  Wishing you minimal SE's with the Neulasta shot!!  I don't actually have my next treatment until Monday - had bloodwork yesterday and I hope all is a go for Monday.  I forced the other onc in the office to look at my red hand and he seemed unconcerned - thought it was a hematoma - pretty nonchalant about it so I hope I don't get a hard time from the chemo nurses Monday!!

Bec- lol RE the hot flash.  I do hope u got some sleep!!  You too smrlvr!!!!

Ellen- lollllllll RE the picture!!  I too vote alien!

Wally- I usually do a big turkey dinner for the family - yesterday I made a one dish "baked spaghetti" and oh my goodness what a great choice - pop it on the oven and done - with a super easy clean up.  Thinking this is the way to go for the future even when I am feeling good!!!

Amazon- I have been told I have nice round head too!!   love the picture by your son!!!

Lisa- as everyone else says, your posts are so wise

Inks- yay for saying adios to the "red devil"!!!!

Phebe- love the pic of you and your daughter!

Paulette- your late night string of posts always puts a huge smile on my face

JAB- I totally hear you on how friends and family react - it's amazing.  My one brother never even called me the first go round with cancer....this time, he's turned into my primary care giver - it has been astonishing.  I agree with the others that pple just don't realize how HARD this all is when we have a decent outward appearance.  It's almost like we have to remind pple of what we are going through...

Veronica, Northwinds, BigT, Quirky....and EVERYONE else, thinking of you with warm thoughts!!!