January 2013 chemo group

oliverhog, I'm in line behind skimommi for the fat donations. No shortage here!

kiwikid, WOOOHOOOOOOO! Done with chemo! You may still be in the woods now, but when you come out over the next few days, it'll be FOR GOOD! Woohooo! And keep in mind, if you need any extra fat for your recon, I have enough for you AND oliverhog.  Although I'm guessing that shipping it around the world won't be the most effective method. That's a lot of dry ice...

Jennt28 – thanks for the pep talk – much appreciated.

Oliverhog – I love rosé and will never be able to look at it the same again.  Noooooooo!!!!  Dinner was divine.  A 6 course meal featuring Wagyu beef as the hero.  I figure I got in my protein last night. LOL.   I also laughed my head off about peeing straight.  When I used to have Brazillian waxes (when I actually made an effort pre kids), I had the same thing and it’s back.  Too funny.  Pubic hair does have a purpose after all.  I also think it is a fart muffler.  Now that is TMI!!!

hope49, I think the clothing thing is like pregnancy. How happy was I to kick around in my pregnancy wardrobe after the baby was born – NOT!  I didn’t want to wear any of the same maternity clothes the second time round either. I binned them or handed-down  to others.

kiwikid, I might have said it before (chemo brain) but woop woop! Yay on finishing.

Bryona, my bar tender today was a large androgynous lady.  Kinda freaky looking.  Fortunately she had a good sense of humour but I would have preferred a hottie.  I don’t think I will ever feel like sex again though so it’s academic really!

Skigirl, to my amazement, apparently I am light-on lower abdominal fat – I have enough to make 2 smaller boobs (c cup) but I was devastated they can’t use the roll directly under my boobs for them.  The older I get, the more upper abdominal fat I have.  I have skinny arms, legs and butt and this tyre around my rib cage.  The PS seems sure he can smooth it down for me when I have the reco.  That would be heaven.  I never thought I’d find myself wishing for a gunt (a cross between gut and you know what).  I have 4 brothers so know a full suite of highly derogatory words about female anatomy.

FEC#3 was today.  I am feel incredibly nauseous already and it’s only day 1. Methinks it is not going to be a great weekend.  Battening down the hatches. I have just sent hubby off for low fat (not) Mexican takeaway – that won’t help my spare tyre but it may build up the gunt for my D cups!! 

Love to you all.

Xoxxo 

Paula - Paula, thank you for putting a name to what I have - next time can you order me not to google images of whatever's ailing me? :-).



Skimommi- thanks for the idea of baby shampoo - and thank the stars I had super sensitive baby shampoo in the tub for my daughter! I saw your message at 4am and immediately got into the shower.



It is all over my head and very irritating and itchy. Yikes.



I searched the boards and others said to use neosporin (or not) and Benadryl cream. I used bacitracin and when that dries up I'll try the Benadryl. I think I'll hit the natural pharmacy tomorrow - er, today- to see what I can use so I can try to avoid antibiotics.



In sad news, we had some tears tonight. I haven't let my hair go uncovered since the bald spots have appeared. Because you know, I have a skullet - I lost the hair on top of my head but the back was hanging on! It is so ridiculous looking. So anyway, kids were in the tub and I pulled the hat to get air underneath but not take it off. My son (6) started to say, no, no don't take it off, I don't want to see it. So I knelt down to talk to him and wound up putting words in his mouth by asking if he was embarrassed of my bald head. He said yes. And it hit me he probably doesn't really know what that means so I tried to explain it to him to see if that's what he was feeling and before you know it, I was crying asking if he didn't want to be seen with his mommy. He said yes. Again, I don't think we were on the same level. But my god it hurt, even though I knew that. My poor child realized my feelings were hurt and he became hysterical saying that he doesn't want a new mommy and I'm his most favorite mommy that he ever saw. he's struggling to express himself and I'm struggling to help him. Ugh...some days are harder than others.



Hope you're all well and kicking ass.

Gingit,

I just realised I posted a pretty light email without refreshing the screen first so my post appears right under yours with no mention of your angst. I hadn't seen it when I replied.

I also had a positive sentinel node and extra-nodal spread. It sucks.

I have heard of a few women with chemo as first cab off the rank and I hope they chime in to offer support.

Wishing you all the best on this journey no-one wants to have.

J xx

Gingit, I think doing chemo before surgery is probably the best way to go.  The doctors are able to tell whether or not the chemo regimen that they're using is actually killing the tumor cells.  Post mastectomy there's no way to tell.  There are some cancers that are resistant to the first line of chemo drugs they use.  Once the tumor's been removed, you can't watch the tumor to see if it's shrinking and if the cells are responding to the drugs.  I almost wish I had had the chemo first.  But at the time, none of the doctors thought I had any lymph node involvement at all.  So, it was rather disheartening to be under the impression that I might have been a stage I or stage II diagnosis because no one felt enlarged or matted lymph nodes on physical exam and none of my images revealed lymph node involvement either.  Then, after the sentinel node came back positive, the surgeon had to remove the axillary nodes.  Not only did six of the 13 come back positive, they were matted together and there was evidence of extranodal invasion of the fatty tissue around the nodes.  That bumped me up into stage IIIb.  So, the fact that you're getting the chemo first would actually seem to bode well for you in that you'll have the additional security in knowing that your particular chemo regimen is actually effective against your tumor.

gingit, you said they didn't get clear margins when they did your LX. Is there still enough of the mass remaining for them to see it on imaging? One of the major benefits of neoadjuvant chemo is that they can see whether or not the chemo is working because they can see the mass shrinking, so if you have enough for them to see, that sounds like a reasonable course of action. Alternatively, is the location of the mass making them think they'll have trouble getting clear margins even with MX (e.g. close to the chest wall)? If so, then doing chemo now also sounds like it makes sense. But if there's not enough left for them to see, and if they think they'd get clean margins with MX, then I'd worry about waiting for those clear margins without the payoff of seeing if the chemo was working. Of course, that could just be me, but those are the questions I'd ask my BS and MO.

Jubby, I hope the next few days aren't too awful for you. Batten down those hatches and take good care of yourself. And save some Mexican food for me! I'm hoping that, now that I'm done with feckin' AC, I'll be able to start eating food with flavor again.

(((((Mandy))))) I wish this were easier for you and for your son. You're right about things probably not meaning the same thing to him that they do to you. Change is difficult for little kids, and this one is a doozy for both of you. I remember when I was a kid and my mother bought a wig (for religious reasons) in a short hair style; she'd had long hair my whole life, and my sisters and I all started crying when she came to pick us up from school wearing that wig. It just made her look like she wasn't our mother anymore. Poor Mom felt awful about "making" us cry (of course she didn't MAKE us!), and she worried about wearing the wig again.  Of course, the next time she wore it, we knew what it was, and that it didn't change who she was, and we were okay with it. I guess all of this is to say that your son may have some of those same feelings of fear about you changing, and he may need some reassurance that you're still the same mommy you were before. And it's all much more difficult for you, because you have your own feelings about everything you're going through right now. But maybe you can try to reassure him that you're still his favorite mommy that he ever saw, no matter what your hair looks like. Maybe take him to a wig shop and make a game out of changing hair styles on both of you. Or maybe that's a rotten idea. There are three things I'm sure of: 1) You're an awesome mother. 2) You'll get through this. 3) Cancer sucks. A lot.

Adding to Zorina's list:

6. That friend or family member who went through chemo before was right: No matter how much you loved and supported her/him, you really DIDN'T understand.

7. (For the red devil ladies) There is no bartender sexy enough to make you drink a bright red beverage.

And a codicil to #4: Your real friends will share their cabana boys with you!

I mostly post on the December board but your discussion of pubic hair, peeing straight and your gunt had me truly laughing out loud this morning. Hadn't heard of a gunt. Have called it a fupa.( fat upper pussy area) You January ladies are great. A good laugh does wonders.

Manda- that sucks with your son...its honestly too bad he's still young insofar as the explanations and understanding goes.  That said, mine are 13 & 15 and couldn't give a flying f*** at a rolling donut.  They're terribly interested in the balding and wanted to know if i'll live- i said yes- they said cool- and they went on their merry self-absorbed way.  I loved Bryona's idea about the wig shop- its like show-and-tell...and something you can play with and have fun with is so much better than the scary unknown.  YES your head looks weird but hey, its only hair.  You're still the same mommy...just a bald mommy.  Would geting him to help clipper the long hair that's left help?  Involve him in the process?  The less self-conscious we are about our hair loss, the better (i find) the people around us deal with it, too.  I'm pretty nonchalant and everyone around has been prety cool with it, too.  Open info is usually a good thing- but that said, i'm not dealing with little ones, either.  My motto is always head-on- let's talk about it and deal with it together.  No secrets, not scary, just me...bald and egg-like. 

Did my BRCA counseling today and they decided to go ahead based solely on my age (40)- even though my family history says no.  Cousellor said it was a pretty small chance i'd come up posiitve (knock-on-wood!) so i'll ask for your NEGATIVE thoughts on this one!!!  Results in 3- 4 months...guess that's the time it takes when its free.    Goooooooooo NEGATIVE!!!

And after 5 vials of BRCA blood, i'm off this aft for pre-chemo bloodwork...today is starting to feel vampiric.  I belly up to the bar for #3 AC tomorrow and here's hoping for as good a run as the last 2 treatments...#2 was actually easier than #1...i know...weird...but i'll take it!  Thanks to all the wellwishers and right back atcha!  Onwards and upwards, and here's to tap dacing on insurgent graves!!!  DIE YOU LITTLE BUGGERS, DIE!!!   xoxoxox Shannon

Debbie- are you wearing Cousin It or is that your real hair???  (looks good, btw...)

Zorina-

#8- things that you thought were scary before your dx, aren't so much anymore!

Smethot- The photo is Cousin It. It is one that can tolerate heat. I work in a restaurant and the last thing I need is to reach across the line and set my hair on fire... That would be fun watching the bartender run around the bar with her head on fire. Oh, the things we have to worry about.

I wore Cousin It out to dinner last night for my birthday. As soon as we got in the car my DH asked me to take it off. He'd rather see me in a hat or bald. He says It is pretty, but, its not me. He saw that I wasn't comfortable in it. Being at work with it on is different. Out to dinner? Never again. She is only going on when I have to work.

Skimommi- good luck at the bar tomorrow... go kick some ass!!

Wishing everyone minimal SEs...

Just had a moment of panic... I realized that my refill for emend was not called in... I had a hard time with my pharmacy the last few times because its not one they typically have in stock. It would have taken a few days to have it shipped in... I knew the dr could give it to me via IV the day of TX but no guarantees the script would be filled for sat am pick up. SHIT! They started talking about delaying my last AC because of it. I burst into tears! I want my last AC!!! lol Who says that?????? Well, I called the pharmacy, and through all the sniffling I was able to get the guy to tell me they had some in stock and they just faxed over the order to fill it asap. He said because I was a regular customer who had a scheduled refill of this drug they have it on hand now. He said don't worry, just to come on in anytime and pick it up! Does this guy have any idea how lucky he is? I would have been flipping out like the Tasmanian devil if I couldn't have tx on Friday because of my script refill running out. God forbid they call and change any of my appts...

julesdenver, I wish you could go back to the beginning and tell your doc not to give you any stats. They can weigh so heavily on the spirit, and what good do they do? Knowing my beastie was agressive was enough of a reason for me to agree to my current course of treatment. I don't need any specific statistics to worry about. I love that Michael J. Fox quote in your signature -- maybe your doctor should have kept it in mind.

smethot, go BRCA negative! I had the test for the same reason you did (the only added risk factor was Ashkenazi heritage, but with no family history that doesn't really count for anything). But, wow, FIVE vials of blood? Crazy! I'm like Skigirl: swish and spit, and 10 days to get results. If I didn't know better, I'd think this is the sadistic chemo nurse's way of getting back at you for showing her who's boss...

skimommi, all those rounds of rads sound like so much, but it'll be over before you know it! At least, that's what I keep telling myself. (I don't know if I believe me, though. I keep looking at me in the mirror and thinking, "Whoa, that bald-headed chick CANNOT be trusted!")

Skigirl, I'm glad they don't have to delay your last AC tx. I totally know what you mean: It's not like I wanted my last round, but when my MO suggested delaying it a week because of the pancreatitis nonsense, I started to say "NO!" before she even had a chance to finish the sentence. I guess that's another one for Zorina's list, courtesy of Nicole503:

#9. The only way out of the chemo valley is through the chemo valley.

Also, I'm glad you didn't have to destroy the guy at the pharmacy. That's a good day's work for both of you!

Jubby and ywheels, how are you two doing today?

skimommi, smethot, and anyone else bellying up tomorrow, kick some ass, ladies! One more behind you, one fewer to go!

I will be at the bar tomorrow as well.  I will be reaching my 1/2 way point of TCH.  Yay!

Mandy, My heart breaks for you and your son.  I can't imagine what is going on in his little head.  I hope the appointments you have set up shed some light and help him to open up.  My thoughts and prayers are with you and your family.

I was reading and catching up tonight and found myself rolling laughing.  Y'all are on a roll tonight.  Oliverhog and Jubby had me in tears tonight.  I learned a few new words for sure.  And agree with the peeing straight.  Seriously!  Who knew?  I love you all. 

The stats are so annoying it makes me crazy.  And I HATE when they give them to me and they are all 5 year stats.  WTF, give me 10 year, 20 year, 25 year.  5 year doesn't sound like what I want to hear.  I have a friend that is a 23 yr survivor so that makes me feel better, but dang it give me some better stats.

Skigirl - I'm sorry that you got so upset about the prescription, but so happy that they took care of it for you.  Whoever thought you would be telling someone that, damn it, I'm getting my chemo Friday!  You are a such a strong woman and I pity anyone that gets in your way.  I love that your husband did not want you to wear your wig.  He obviously has your back at all times and he wants you to be you and for you to be comfortable.  What a keeper!!!!

Skimommi and Bryona - I too think about radiation and at times think it is a ton and at others think, it's no biggie.  I am having 30 treatments.  25 of the whole breast and 5 that are of the tumor area only.  They told me that after the first two, they will only take about 5-10 minutes.  I guess getting everything set up takes a little time and then it's a cake walk.  I am having mine done at the hospital I work at and will walk over after work and have it done.  I will just be excited to get to that point.  I won't be done with radiation until the third week of July.  They said I will have 4-5 weeks off between chemo and radiation.  Are y'all doing the same?

Congrats to all of you that are finished, finishing up a phase, reaching a milestone, having a great week, day or moment.

Here is my heart to all of you, but especially to those of you that are having a rough time, yucky side effects, a shitty day, a momentary mental breakdown, or any other uncomfortable moment.  (((hugs)))