Anyone starting Chemo in August 07?

katoMato · November 2007

Good Grief - I didn't have any idea how late it was until I looked at Nash's "Good night, everyone" then looked at the clock - so this will be quick!

Angie - How did they determine that there were "minute traces" left? Were they able to be seen during surgery? The clean margins and the no nodes make sense - I just don't understand where the minute traces were if they got clear margins. Were they in another part of the breast? I didn't think it was possible to see things like that. (Unless it was another tumor?)

And the whole drain thing is awful - I had only one (thank heavens or i would have committed homicide, surely) but it stayed there draining, and draining, and draining for nearly 5 weeks. They finally took it out because they were worried about an infection after 4 weeks. So then I developed a seroma that had to be drained 2 times. The second time they took out 250cc's. That is a CUP of fluid, in case you were wondering. I guess it beats the alternative (lymphodema?) but they are SUCH A DRAG. (oh good, kaye. That's encouraging. please, keep it up.)

And the bad attitude? Please. We understand. And remember, THAT'S WHAT WE'RE HERE FOR. So you don't have to go on a murderous rampage in your neighborhood. (It's hard to do away with all the bodies. Believe me.)

ok. NOW good night everybody.

chemomom · November 2007

Thanks for the encouragement everybody. You chicks rule.

It sucks that we all have to go thru so much. Good luck with your mom, Nash. And I will give my mom an extra hug while thinking of you, Kaye.

As for me, I pestered the cancer center enough that I got one drain removed (it had been plugged and useles anyway) and a dressing change. So no more tape all over me and once that useless drain came out (along with a ton of fluid that came out after) I was feeling MUCH better.

Hopefully we can all have some semblance of a decent weekend. Angie

chemomom · November 2007

oops... forgot. Kaye-- they only found the traces of cancer under the microscope when they did the final path. It did not appear to be a new tumor, just residuals of the one that we were shrinking with chemo. If that doesn't make sense, please tell me-- I have to trust what the docs say as I am not as well versed in a lot of this as some of the other ladies here. So if there's a flaw in this description, please let me know.... Angie

kidsmom · November 2007

Angie-I'm glad to hear your recovery is going OK. I am not looking forward to my bilateral mastectomy. Are you able to pick up your kids? Do you have help with that?

Kaye-thanks for thinking about me. I am done with chemo with Friday the 9th. I don't write often, so that is so sweet that you remembered. I read almost everyday and feel like I know you all but recently have just felt so overwhelmed by everything I can't even type.

How many of you are having rads even after a mastectomy? I posted on the rads thread a similar question. I don't know why, but I was sure I wouldn't need them if I had a bilateral mastectomy. Now I find out I do and that changes the kind of reconstruction I can have. I tell you, I was so upset after my meeting with the rads oncologist. My sister and I were in the room and when he came in he looked at both of us and said, pointing to me, it must be you I'm here to see or your with the traveling gypsies. I'm assuming this comment was in regard to the scarf I was wearing rather than a wig. I was so taken aback, but didn't even say anything to him about being so rude. He was one of those Drs who hasn't been a patient or had family as one lately. He continued to tell me how bad my situation was because of my age and triple negative status. I have stayed pretty positive during this whole experience but after meeting with him I just wanted to cry. My sister worries about me so much that Ididn't want her to see me upset, but then I broke down at school yesterday when the other teacher's were asking me how I've doing. I just feel like I need a mental break from all of this crap. i thought I was nearing the end, now it appears I'm not even close to the halfway mark.

sorry for being so depressing. I appreciate just being able to vent to someone who understands the frustration.

I hope you all have a good weekend. My kids are excited the leaves are down and we can make a big pile to jump in. Those are the things I'm trying to focus on again. Seeing their smiles and happiness at the little things.

kidsmom

DGHoff · November 2007

Hi Kidsmom,

We've all been down that road of feeling depressed and wishing we could just step away from it all, so we totally understand how you feel. I know when I'm not feeling great and my counts are way down, I just feel like everything is so much harder, but when my counts are way up and I feel good, its a lot easier to let things roll off your back. Hopefully with your last chemo in sight, you'll start feeling stronger, and it will all get a little easier.

I had a mastectomy, but I will still have to do radiation afterwards too since my cancer was further advanced than expected. What kind of reconstruction were you planning? I didn't think I was going to need radiation, so I have a tissue expander and will be getting a silicon implant. I was worried about how that would affect things so when I had my last appt with my PS (His sister is also going through breast cancer so he is totally understanding. You are right that if a doc has family going through it, they are a lot more sensitive! He actually gives me hugs at every appt), I shared my concerns with him. He said that he wants to do the exchange before I do rads. He said the studies are showing better results and less chance of infections and complications by doing it before. I've been talking to others on these boards about it as well, and there are lots of women doing the rads after getting an implant. If your radiation onc won't do it, maybe you can see another one. I guess one of the changes is that they do a smaller dose but maybe for a few days longer.

As I learn more, I'll be glad to share it with you.

Hang in there Kidsmom! We're with you in spirit and sending cyberhugs your way.

DeAnn

nash · November 2007

kidsmom--<<<<<<<<<<<<<<HUGS>>>>>>>>>>>>>>>>>>> And a big smack up the side of the head of the idiot rads onc.

Angie--glad one of the drains is out and you're feeling a bit better.

And, everyone, rant and vent away. That's absolutely what we're here for--you guys support me when I grumble away, and I and everyone else are here for you.

katoMato · November 2007

Kidsmom and everybody -

Ditto, ditto, ditto.

Thanks for checking in and keeping us informed on what's happening with you.

No words of idiocy right now, just sincere gratitude.

I understand - I also feel so overwhelmed sometimes that I can't STOP typing. (You've seen the results.)

I am so grateful for each and every one of you. Just knowing you're there is huge for me.

Have a good weekend everybody,

kimmie39 · November 2007

Hi everyone,

OK your starting to scare me a little. Doc says Ill have 4 drains. Come on guys tell me that its not as bad as it sounds. Ive had drains before and they were a major pain in the *ss but they didnt hurt or anything.

Kidsmom - sounds like were chemo sisters! I finish on Friday the 9th as well!!!! I have Inflammatory BC and my next step is surgery then yes Im having rads.Sounds like your rads doc is a real out if touch jerk!! Makes things even harder than they already are. Wish I had something wise or humorous to say that would help.It infuriates me that you've tried so hard to stay positive and then you go to HIM (for help) and he knocks you down.

Has anyone had any experience with reconstruction after rads?

Any advise?

chemomom · November 2007

Kidsmom, I will also be having rads even though I had a bilat mast. I meet with my onc & surgeon on Fri. I may be starting rads around Thanksgiving, or possibly more chemo. Still don't know. I expect chemo and then rads.

I am still experienceing a lot of discomfort from the surgery more than a week out. Ibuprofen just isn't cutting it. I thought i would be brave and change my dressings today on the area formerly known as my breasts. I was so shocked at how extensive the scars were I almost just froze and couldn't do anything. I had been feeling so hopefull that I would be able to stand to see myself, since I snuck a peek when I had the drain removed & dressing changed by the NP. But I wasn't prepared to see the incision go so far around toward my back when I looked in the mirror. I had very large breasts, so I am assuming that is why the incisions were so large. So I am depressed. I can't bear to look again and I don't want my family to see me yet either, even though my sister has offered to help me with my dressings. This is all so hard. Even when I think I am strong, some new thing arises to take that feeling away. Ugghhh. I just want to cry.

And kidsmom, I am sorry to report that I can't pick my kids up. I am afraid to even have them on my lap still. My 2 year old is so rambunctious and unpredictable. Luckily my dh is super with the kids. I haven't changed a diaper since surgery. But I also haven't had a real hug since then either. And I have been sleeping propped up on my couch and that is starting to get old and i am feeling lonely, although I don't even want to try to think about getting up from lying flat yet. Again, I just want to cry. I read these boards and sometimes it is hard to hear of others who can do so well and say it's not that bad and they were only sore a few days. Or whatever. I feel like I am failing. I can't even get well correctly. Thank goodness for Ativan. And you, my only friends that really understand. And is it just me, or do poeple really just want to hear that you're doing fine? Even my own mother just glosses over when I am emotionally crappy. I know they just feel helpless, but hey, so do I.

Oh ladies, I am sorry. This posting is so miserable. I just can't stay upbeat about all this. I will take 2 Ativan and try to sleep thru a movie with my kids. Angie

nash · November 2007

Angie, I have totally found that non-cancer people only want to hear that you're doing fine. It's annoying. I supposed it's that they want you to be doing fine, and don't know what to say otherwise, but still...it's irritating. That's why this site is such a godsend--we "get" it.

And you are so not a failure. You are in the middle of a really hard time, emotionally and physically. Everyone has a different experience, and if your reality is that it's hard, then it's hard.

But I know what you mean about wondering when you hear of other people having an easier time. I even feel like a wimp on the chemo, when my mom has been trucking through it for five years. And on a lesser extent, my port placement laid me up for a couple of weeks when other people said it was a breeze. So there's always going to be those people who sail through a mastectomy with little or no pain, and those people who have few side effects from the chemo.

So...lots of gentle hugs coming your way.

kimmie39 · November 2007

Angie - Many Many Many good thoughts and good energy your way. Sounds like you can use it.

I feel like that to at times. I wish I could take it away but instead Ill have lots of warm fuzzy thoughts for you. It WILL get better.Its really hard to stay upbeat when you have as much going on as we do!! PLUS your recovering from a major surgery AND youve had a part of your body REMOVED!!!!! Dont be so hard on yourself. I told my surgeon, No matter how you put it your amputating my breasts!!!! And thats how it feels.

My surgery is November 28th and Im really scared. Not of having surgery and not of pain but of not having breast. Ive been over weight my whole life and keep my hair short. Its embarrassing to admit it but from behind Ive been mistaken for a man more than once. What will I do when I look like a man ( No breasts). Im even having trouble looking for post masc.tops. I never realized how female fashion is centered around breast. V necks little gatherings at the chest etc...

Gee I guess I'm not helping you much. But I do know how you feel. And were all hear if venting helps.

Have you considered counseling? I Have.

Hugs

Kim

DGHoff · November 2007

Angie and all,

Your comment about feeling lonely struck such a chord with me that I thought I'd share a song I wrote about my recent hospital experience when I was nuetropenic. It kind of extends beyond just the hospital too. I know you guys of all people will grasp the feeling behind it.

"I'm Not Alone, But I'm Lonely"

White walls in a hospital room form a perfect canvas for my fear.

I lie in the dark trying to make things better than they appear.

The nurse brings me a paper cup full of names I can't recall.

The food they bring me tastes like hell, I want to throw it at the wall.

And I'm not alone, but I'm lonely

Cause it's just me in my head.

Some say, its just mind over matter,

but I'm still stuck in bed.

Yeah, I'm still stuck in bed.

The doctor listens to my heart and he gives me a weak smile.

We don't have the answers so we're gonna keep you here awhile.

So it's one more day of boredom, one more long and sleepness night.

One more grilled cheese sandwich, Lord, I hate flourescent lights.

And I'm not alone, but I'm lonely

Cause it's just me in my head.

Some say, it just mind over matter,

but I'm still stuck in bed.

Yeah, I'm still stuck in bed.

Well the doctors say now I can go, and I can get back to my thing.

But I'm feeling like a little bird who has got a broken wing.

You ask me how I'm doing, I will smile and say I'm fine.

Well it's not exactly true, but I am not exactly lying.

And I'm not alone, but I'm lonely.

I don't know if I can fly.

Some say, it's just mind over matter,

so I guess, I'll have to try

to learn again to fly.

So, I guess we all have to learn to fly again somehow. I know I'd have a harder time doing it without all of your support. Thanks and love to you all.

DeAnn

baldmama · November 2007

Hey, I'm new to the site and hope to find some new friends who know what I'm feeling. I am 37, mother of 3 (8, 10, and 14), married to a very supportive husband, and am being treated for stage 2, right side, diagnosed July 2, started chemo on Aug. 6. I started out with Adriamycin, Cytoxan, and 5-FU; I couldn't tolerate the Adriamycin AT ALL (suffered severe dehydration due to uncontrollable nausea) so got changed to new regimen of Taxol and Cytoxan. Taxol doesn't give me the nausea that the Adriamycin did, but man, do I ever HURT for 2-3 weeks (almost up until my next treatment) and don't want to do anything but be a vegetable! I just hope that this is going to be as effective as my first combo was. Being so young and having young children to raise, I want to do everything I can to keep this from coming back, and I know that Adriamycin is one of the strongest, most effective for at least 35 years that I know of. I wonder sometimes if I took too much of a risk by dropping it, but my onc said she didn't want me to lose my quality of life while being treated. I took every kind of nausea med practically available--nothing worked. I couldn't keep down 2 little sips of water! Now my biggest deal is the pain, and that interferes with almost all that I do. I suppose I will just have to bite the bullet and start taking my pain meds throughout the day--coherent or not--and quit worrying about how functional I am or need to be. My family is pretty well used to me not functioning too well already. I just always tried to be "supermom" and can't do it anymore, and it drives me up the wall!!!

baldmama · November 2007

This is a more personal subject, but one I feel we all have in common. SEX! I dread it, I don't want it, and at 37 I feel like that's very abnormal. Of course when you mix in a whole lotta chemo, a shiny bald head, and depression, I suppose it seems a little more normal. How do you all deal with this, or DO you deal with this??? Yell

I realize that at 3 something in the morning I should be asleep, but that's yet another terrible side effect for me. I'm just too stressed to sleep! Cry

chemomom · November 2007

DeAnn, Thank you for sharing your song. It really sums up what it's like with this stupid disease. At least, it sums up a lot of my experience. I understand every word, even though I have at least been lucky enough to avoid neutropenia and an "extra" hospitalization. Thank you for for putting all that into words. And so beautifully done. Thank you again for sharing it. It's only here that I feel like I don't have to "smile and say I'm fine."

I did opt for 2 Ativan and a nap during "Arthur and the Invisibles." I am still not OK with everything, but maybe a little better today. At least for the firt few hours of today...

And Kim, I have thought of mastectomy as an amputation, too. And of being basically mutilated. Which it really is. Giving it a name like "mastectomy" doesn't change what really happens. Calling it "mastectomy" seems to me to downplay what it is and come to find out... at least for me it was pretty major surgery and recovery sucks. But I too will be among the chubby chicks with no boobs club, if you want to start one. On a light note, I have discovered that without my big boobs in the way, I get much too good a view of my big gut! A whole new perspective! Ewwww... At least now (boobless) I can jog, I mean, that is, if I wanted to and I ever had energy to. ANd if my plantars fasciitis doesn't flare up. Good lord.... That was supposed to be a bright side. Oh well.

I am rambling so I had better sign off. Later ladies, Angie

chemomom · November 2007

Baldmama-- have you tried Emend for nausea? It was wonderful for me. Although I didn't get Adriamycin, (I had Taxotete, Carboplatin, & Herceptin), I had no real nausea to speak of (more like slight reflux). If your doc hasn't tried Emend for you and you even want to consider switching back from what your on... maybe ask to try the 3 day Emend. Angie

kimmie39 · November 2007

Wow deanne, that song really hits the spot doesnt it. Especially the "Im fine" when people ask how your doing. What do you say to that??? Did writing the song make you feel better? Sometimes it helps me.

Baldmama - Hi newbie!!! I think you will find ALOT of support on this site. All of us are going thru the same things at the same time. Even though the effects are different for everyone your sure to find someone here whos feeling the same way. As for sex, havent had it in 8 months. Just dont feel like a sexual being. All the changes in me and the changes in our routine and so on have kind of turned both my and my husbands libido off. It kinda sucks because I feel like Im living with my "friend" not my lover but its just the way it is right now.

By the way the first time I had BC I was 27. At that time I had adrianimicin(sp) Cytoxan, 5-Fu. did pretty well. Then 11 yrs later here I am again!! Now Im 39 I have 3 kids 19,7,4 all girls. I have Inflammatory BC on BOTH sides and yes Im scared. I keep plugging along and this site helps me cope alot of the times.

Chemomom - It makes me feel better hearing someone else who feels calling it a mastectomy or having your breast removed is downplaying the severity of the procedure. If someone has there leg amputated people see that as a severe loss to the person, but it having your boobs amputated isnt supposed to be such a big deal. I had a "friend" say to me " there just boobs, heck I dont have much to begin with. Its better than dying" So I said to her " Ill tell ya what,if you were sick which two body parts would you want them to cut off of you?" Kinda puts it in a different perspective.

I laughed all the way thru your Club comments and your jogging joke.

Ive NEVER been a jogger but who knows what Ill do when I get to stop being a patient and find a new normal in my life.

OK so heres another problem Im having. My husband just doesn't understand what I need. He's alot like the rest of the world.

"How are you feeling today?'

"Ya need anything while Im out?"

What I hear is

" I STILL dont get it that your in cancer treatment and feel lousy"

And

" Im going on with life, shopping, working etc, but to make me feel better Ill ask if you need anything"

I know it sounds harsh but its how Im feeling. Seems like the world is in hyper drive and Im in park watching everything go by. I hate it!!!!And lately I feel resentful. Not that Id want anyone else to be where I am, I just want my old life back! Some control over my own body and a day that doesnt center around BC!

OK OK enough belly aching

Thanks for listening

Hugs to all

Kim

kidsmom · November 2007

Angie,

I am so worried about not being able to hug/pick up my little ones. I'm glad your husband is helpful. That makes a big difference.

Was not having a mastectomy an option for any of you who did? I originally had a lumpectomy but when I asked my onc for numbers in regard to reoccurance he looked things up on Adjavant online and came up with a 1 in 4 chance of reoccurance and a 1 in 5 chance for death in the next ten years even with chemo and rads. That's when we started the discussion about mastecomy again. I originally wanted that, but was talked out by the surgeon. My onc assummed that with a mastectomy I wouldn't need the rads. That meant I couldn have implants which had a quicker recovery time. Now with the rads and that not being an option I keep wondering if I should have the mastectomy? Or just wait and monitor????? These decisions are too hard to make.

I can also relate to everybody with the people wanting you to be OK. Everytime I complain the least bit to my dad, he just says, keep your chin up. It makes me want to scream. My mom had bc then passed after a two year battle with lung cancer. He knows what its like and still doesn't have any empathy.

thanks for listening again,

Kidsmom

Ggma · November 2007

Oh my ladies, don't let your guard down...ever! I breezed through most of my chemo and finished up on October 17th. I thought all was good to go. Went in last Wednesday for sims and CT scan and breezed through that too. Got to feeling really crummy on Thursday, but tried to get through the day at work anyway. Had to give up and go home at 3:30. By 5:00 p.m. Thursday I was being admitted to the hospital with chemo induced neutropenia. My white blood cell count was down to 1.1 and I was septic. They sent me home this afternoon after being in reverse isolation all week-end even though my counts are still only up to 2.2. I'm off work and confined to home for the week. My son isn't allowed to come home for 3 days because he was at Marine Corp drill and got vacinations and they don't want him around me. My dh spent 2 hours stripping the beds, washing every surface in the house down with Clorox wipes and hovering over me. He's gone out to fill my antibiotic perscription finally so I'm allowed off the couch to sneak a message of warning out to you! I thought that I was home free, but I was wrong. PLEASE be careful!!!!

DeAnn ~ I loved your song!!! It's so wonderful to be able to read posts and know that someone out there knows exactly how you're feeling.

Debbi

nash · November 2007

Debbi--HOLY MOLEY. Who knew!?! That is insane that the neutropenia hit you weeks after chemo ended. Makes sense, I guess, but man. And septis on top of it. I'm so glad to hear that you're home and somewhat out of the woods with this.

DeAnn--Loved your lyrics. You are a talented woman.

Angie--I was thinking more about your post-op, and I was thinking about how in some ways this is a lot like different post-partum experiences. I remember when I had my first baby, there was a woman in my prenatal group who waltzed in at our post-partum get-together, and she had had this enourmous 9.5 lb baby 10 days earlier, was back to being a size 1, and had just come from a nice dinner out with her husband and baby. The baby was sleeping six hours straight through at ten days old. I was sitting there sleep deprived, fat and spurting breast milk everywhere with a screaming baby, and really hated her. So it's sort of like the gals who sail through the mastectomy with no pain and waltz right into reconstruction and end up with these gorgeous boobs that they love. Good for them, but man, one is a teansy bit resentful.

Baldmama--Welcome!!! I just turned 39, and have a 5 1/2 year old and a 9 year old. I'm on the same chemo you were on (CAF x6), but I've been able to control the nausea with the Emend. I'm still really nauseous the entire cycle, but I don't throw up. Sounds like you had an awful time with it--I'm glad to hear your onc switched you to TC. As for sex--yeah, no interest. It's all I can do to stay awake much less be alluring. My poor husband. Fortunately, he's a very patient man. I wouldn't want to be married to me.

Hugs, everyone.

baldmama · November 2007

Kimmie39: It's really great to hear from someone else who sees and perceives things like I do!!! The non-sexual relationship, the way I read what people say to me as totally different, all of it! I thought I was completely off my rocker (well, the jury's still out on that one... Tongue out

) I'm glad we're at least in this together; it's good to know we have someone to spill on, because unless you're there, you really don't know what to say or how to sympathize with a BC patient. My sisters and mom and everyone try, but they really don't know what's on my mind each and every day, what thoughts go through it, how my world turned upside down in a second, and how SICK I feel on a daily basis. Thanks for being here!

baldmama · November 2007

nash: Hi, and thanks for the advice w/nausea. My onc did prescribe the Emend at one time, but I am uninsured and could not afford it, so I just had to survive on the ones I already had or could afford, know what I mean? I have someone at the hospital working on my case now to try to get me some assistance, but until then, everything is out-of-pocket and very hard to come by. Thank you, though. Maybe Tuesday when I see my doc again, I can ask her about getting it through the pharm. company free; sometimes they will do it if you qualify financially, and believe ME that's not a problem!!! We stay broke since all this started! It was really great to hear back from you!

kimmie39 · November 2007

Debbie - OMG!!!! Sounds terrible. So far Ive kinda had it easy, Ill keep my guard up. Hang in there.

Baldmama - I,m glad we have each other to!! If your off your rocker Im right there with ya . You should definitely check out getting help not only with meds but I think the American Cancer Society has some resources for uninsured cancer patients. Ill keep my ears and eyes open for you. Paying out of pocket has to be ruff.

Talk to yall tomorrow.

Hugs in Va

Kim

katoMato · November 2007

http://community.breastcancer.org/topic/6/conversation/506873?page=1

Hi Baldmama - Welcome aboard! The link above SHOULD take you to an article that NoSurrender posted some time ago on the "Help Me Get Through Treatment" board. If the link doesn't work, go to the Help me Get Through Treatment, then go to the "Taxotere and Cytoxan" thread. It should be on that first page.

I did TC instead of ACT because of the long-term heart issue associated with Adriamycin, and because I don't do well with the whole vomiting situation (my heart stops. inconvenient.) But this article was reassuring to me that the TC drug combo was just as effective as the ACT that they've used for 30 years, if not more so. I had waves of nausea occasionally, but it was no where near as bad as I had expected.

Kimmie - I'm sorry I was so ... alarmist ... about the drains. Yes, they are a mental aggravation, an irritation and an inconvenience - but you're right. no, they're not painful. Mine had just set up housekeeping and didn't appear to want to leave any time soon. So we yanked 'em and sucked their little brains out. Ultimately, it all worked out just fine - as those things typically do.

Also, the "what they said" vs the "what I heard" really struck a chord in me, too. I'm suspecting that with me it was the decadron. I occasionally was a possessed woman - knowing that what I was saying/thinking was totally out of character for me, yet, somehow strangely justified. I'm SO glad that's done...It will be done for you, too. Sooner than you know.

Angie - Oh,Honey, sometimes I just want to kiss the top of your fuzzy head. There is no question this bc stuff is big, bad stuff - across the board. And I'm wondering if your "blues" is like a Post-Surgery depression brought on by the surgery itself. (Very common) The issues are there, but the coping mechanism is having difficulty functioning. There is a little exercise I do to keep my sanity when things get overwhelming. You said your dh is great. Thank God for that. Literally. I heard a story of a woman coming home after delivering twins and shortly after that she was diagnosed with bc, her husband went upstairs, packed and left her.(I HOPE there is a hell for people like that.) Are your kids are healthy? Another thing to thank God for. My brother's wife delivered a baby who shortly after birth was diagnosed with liver cancer. Her short life (5 years) was filled with chemo, doctors and tests. When I've tried that, and it doesn't work, I let myself go and be miserable for a while - but I always end up trying to say "thank you" for SOMEthing because the very act of saying thank you makes me grateful. And grateful feels a lot better than how i was feeling before. (You can also just vent on here...we think you are doing a great job, you're wonderful, and a real angel - just like your name says.)

Debbi - Good Grief, girl...I'm so glad you're ok now! Thanks for warning us. I was so freaked out after my neutropenic episode, I behaved the entire time like I was neutropenic, so I'd be safe. Pretty much the whole time I did cooked veges and canned stuff, washed my hands constantly, and wore a mask anytime I went out during days 7 - 14. I had NO IDEA it could hit TWO weeks later!

Ok, the time change has my sense of time completely tweaked. Brain is off to bed, I must follow. Good night, ladies.

yellowtownhouse · November 2007

Home today. Had a really rough weekend after Taxol #7 on Friday. But Nov. 16th. is the final one.

I'm far too befuddled to speak to each of you but did want to talk about something. I don't know if I can get my mind to say the words, but here goes.

People often find us a threat and this is very very scary to them. They use coping mechanisms to convince themselves that 'we are just fine' and they really don't have to be overly concerned. I believe it is truly a protective action on their part because after all......it could happen to them! So.....families, friends, and associates will sometimes keep us 'at arms length' much like using the cross if you come across Dracula! Some get over it....some never will. Some just feel as if they don't know what to say, some just babble nice platitudes and move on as quickly as possible. Some are not even able to make true eye contact with us. There is only one word that truly describes this behavior....fear.

And it hurts. Sometimes the people who love us the most are paralyzed with fear. So, they climb on the "lets get 'em well" treadmill and run so fast that they don't even notice that they've left us behind.

Their intentions are good and well meaning but they often live by the standard that any action is better than none. In the meantime we're left with wanting someone.....ANYONE to understand what our life has become. We want to scream in frustration that we have the biggest fear of all and why can't they see it? The answer is that even the most loving and supportive have not been given a ticket to walk in this valley, nor do we ever want them to. They are there for us for all the consults/ treatments/ surgeries/ sickness/ and hospitalizations. They can hold us/ reassure us/ and stand by us. But they cannot "be" one of us. It is only those of "us" my sisters who did get the 'ticket' who could possibly understand what our lives have become. And for this reason I am blessed to have found this forum and all of you. You have held me......carried me......and walked beside me everyday from the day I found you, and I will be eternally grateful. I know that all of us are here for each other....even on the darkest of days. And I also know that our valley has sunshine as well as the shadows and that we scatter the sunbeams each and every day.

Blessings and love to all of you.

June

kimmie39 · November 2007

Trust me I get it. I know they're afraid. Unfortunately for me I just haven't grown enough to view it in such forgiving light.

Im afraid to!!! But I cant run away. I cant act as if nothing is happening and go on with my life as if all is well. I HAVE to face up to this disease and fight or my life,and I have to do it with little or no help from family and friends because there"afraid".

I haven't come to terms with that yet. I know it would be better for ME to forgive and go on but its just not that easy for me. Ive ALWAYS been there for these people.Whats happening to me could be happening to ANY of them. Would they want to go it alone, or would they expect some support from family and friends.

Its a real issue for me. One I struggle with daily.

chemomom · November 2007

June, you are so right.... they can be there for us, but they can not "be" one of us. Well put. Angie

chemomom · November 2007

Ladies you will be so proud of me!! I stood in the mirror this morning and reminded myself that the only thing i would see if I took my bandages off was me. So I stood there a minute or two repeating those words, "it's just me, it's just me" and i took all my bandages off and looked at myself clearly and completely for the first time since my surgery. I am very proud of myself. No tears-- it was just me and I can handle me.

Now for those of you who have had a mastectomy, maybe you can help me out a bit. I guess maybe my surgeon didn't explain things well enough about how i would look post-surgery, or maybe my pudgy size and large boobs have something to do with this, but I thought flat would mean "flat." i am anything but. The NP that took out the first drain said everything looked normal, but I've got some major "hills and valleys" going on. I am just a week & a half past surgery, so I wasn't expecting it to be picture perfect, but i don't know how I will even be able to wear regular clothes when the bandages come off. Is this how it normally is? I opted to forgo reconstruction and I was planning on going without breast forms, but geez, will I be able to wear clothes without looking misshapen? Your council will be greatly appreciated. And i will check the surgery threads too... Thanks, Angie

DGHoff · November 2007

Welcome Baldmama! I'm sorry you've had to join our little club, but we welcome you with open arms and hope that you feel like one of the family, dysfunctional though we may be!

Debbie - Thanks for the word of warning. Having done the Nuetropenia thing, it definitely is not something I want to do again, so its good to know that it can sneak up on you even after you are done.

I learned something pretty interesting today while searching about HER2 stuff. Since I can't take Herceptin, I've been searching out alternatives, and there are some really interesting articles about research that showed that Evening Primrose Oil or Borage Oil actually helps to suppress the growth of HER2 cells. I figure it can't hurt to add a little oil to my morning smoothie, so why not try it. At least I'll feel like I'm doing something. Actually, it turns out that dropping Herceptin has actually been a good thing in terms of how I feel. I feel like a different person without it. A lot less fatigue, not as much muscle pain, less drippy nose, and way fewer hot flashes. (Good grief, I had no idea how completely awful hot flashes could be. Chemopause is no fun!) Anyway, thought I'd share that little bit of info with all of you HER2 ladies.

On the topic of how other people react to us, I know much of it does boil down to fear, but in my experience, it also has a lot to do with the fact that people don't know what they can say or do to help. Especially if you are someone who has always been independent or strong. I had tons of people offering help when I was first diagnosed, but I soon realized that nobody was going to do anything unless I told them what I needed. I learned that I had to be really specific and start telling people exactly what I needed, whether it was help with laundry, a night out, extra help from coworkers, or a shoulder to cry on. I found that most people do want to help, but they just don't know how to do it. They have a tendency to want to fix things for me, but I just let them know they don't need to fix it. They just need to listen. The only friends I have who just really get it without being told are friends who lost their daughter to cancer. They understand because they've been there, but it is unknown territory for most people. So, don't be afraid to say exactly what you need to those around you. Some people maybe won't respond well, but maybe some will.

Wishing you all a good night.

DeAnn

DGHoff · November 2007

Angie honey, good for you! I do know how creepy that first look is, but it is a major step, and you did it. Big hugs coming your way!

Although I have a tissue expander (and a small one at that as I was only a little A cup before surgery), I can definitely tell you that even that was a very lumpy affair right after surgery. I was quite surprised at how uneven everything looked. It took a couple of weeks for things to "level off". I would guess things would even out once the tissue has a chance to settle.

DeAnn

Anyone starting Chemo in August 07?

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