Starting Chemo in JAN 2007
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Pat, welcome to the January group! I'd love to have you hang out with us, so I don't have to work so hard to see how you're doing. I gravitated to this group the same way - seemed to be on the same schedule as most people in this group. And besides, they're just such a great group of ladies. You'll fit right in.
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Jan, I think you should keep the wig - it looks great on you, good length and color. I think Tina's right, it's attitude - just put it on and hold your head high. Nobody will know it's a wig, unless they already know, and you'll get used to the feel of it. You just have to quit resisting, if that makes sense. It looks great.
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9:30 works ok for me, too. That is (ostensibly) after my kid's bedtime, although in practice they are rarely in bed by then. I will try to get them completely ready so that I can turn my attention to my online family when the time arrives!
UGH...my weekday schedules are absolutely brutal...I am so ready for school to end and my duties to shift around....the do not lessen, but having the rhythm change every so often makes it easier to keep up with! -
Ack.I can't stay up that late...anyone want to chat early, like 7:30 or so? Maybe we can have two chats.
Mizsissy -
Mizsissy, I can probably make 7:30 and 9:30 both. However, I need to know what time zone we're using. I think this was discussed earlier, but when Rebecca says 9:30, I presume she means Eastern time, right? So that would be 8:30 for us in the Central time zone? And are you saying 7:30 Eastern, or Central. This is confusing me today for some reason.
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I will join in for the late chat tonight. Let's plan to do it earlier on Thursday for Mizsissy and other early risers. (Of course, you can still add an earlier one tonight too).
"see" you tonight! -
Hi, I'm 7:30 at EDT. My problem is I get too stimulated by late phone calls and other communications and don't sleep, so I try to wind up chats by 8:30 pm or so. Any other takers?
You know, this chat room is so cool we can go there any time. In fact, we could make it a forum.
*Please save transcript of chat* so people who can't make it can see it.
Mizsissy -
Well, I seem to still be on a rocky road - things just aren't going smoothly at all. Surgery-wise, I'm doing fine, although Thursday and drain removal can't happen soon enough! I even considered calling and trying to talk them into seeing me tomorrow instead. I'm pretty much over the cold, just an occasional nuisance now. However, while I was in the hospital and my blood pressure was so low, they stopped all my blood pressure medications. I seemed to have no problem with that, and my pressure never went higher than 100/70 even after I went home, so I didn't restart them. Now, I'm a nurse, and I know perfectly well that one of the meds I was taking is one you don't discontinue abruptly like that, but they did it in the hospital (I was on morphine, I thought anything they wanted to do was just lovely) and by the time I got home and got settled, I thought perhaps I had gotten away with it. Well, I didn't - it started with shaking or twitching when I tried to hold the newspaper, got a little worse over a couple days, and by yesterday I whole body was shaking, and my pulse was sky high, and I just felt like crap! Just in time for my visit to the PS.
Needless to say, I didn't impress her yesterday either. She looked at my mastectomy and said "oh, this looks so great!", which was the last thing I expected to hear about the mess that is currently my chest. She says that it is very rare for a surgeon to do a skin sparing mastectomy with as good a result as this guy gets, everything nice and pink and no skin loss at all. That made me feel better. However, she thinks I'm still not ready, said I looked pale still (no kidding) and tired, and she wants me feeling really great before the DIEP. So, I'm going back on July 12 and we'll try to set a surgery date then, but it looks like August. That was a blow - I know she's right, but I'm so ready to just get ON with it! I had a major meltdown last night, just totally lost it. My poor husband....he didn't know what to do with me. I'm feeling much better today, although still shaking. I did see my family doctor yesterday afternoon to confirm what I thought was going on, and I'm back on my BP med, so hope the shakes will go away soon. Meanwhile, dh just came home for lunch and surprised me with treats from our favorite sushi restaurant - what a sweetie. This has been hard for him, and he's really been right there for me, even if he isn't the best at helping with the housework.
Lynn, I'm so sorry about your infection - I'm sure it will clear up in time, but just like all this other stuff, it seems so unnecessary. We've been through enough, already! Also sorry you're having fluid trouble again - I still have occasional puffiness, but nothing as bad as I had for a while there, so hopefully yours will go away and stay away soon. Nancy and Viddie, hope you guys are also doing better. Viddie, I think the first time I swelled up it was the first day it had been really hot here, and I wondered at the time if there was a connection, but in looking back, I think not. It just made it more uncomfortable - I think the taxol and the taxol alone was to blame. Just keep an eye on it and don't let it get as bad as I did before you get help. Melia, how's your swelling - any relief yet?
Mizsissy, I'm so sorry about Bunky - I know how hard it is to lose one who has been part of your life for that many years. Hugs to you. And Melia, sorry you're having geriatric cat problems, too. I treasure every day with my old guys, but I wish I didn't keep thinking about it. They are both starting to have health problems, so it's hard to avoid thoughts of mortality.
Amera, I'm sure you do look edgy and cool, and glad you are going topless. I think it's a big step toward normalcy - you kind of have to declare yourself normal, and just get on with it. I'm just not there yet. More hair is coming in, and it looks like hair now, but still too much scalp showing. I can see that there's hope, though. Tina, you cracked me up with your comment about the Summer of Ugly. That is perfect - and unfortunately, so true in my case. I know it's temporary, but I really am a mess right now!
Joni, the trip to Banff sounds wonderful - I've always wanted to go there. How far is it from you - can you just go for the day, or did you spend the night? Jan, hope your LGFB class tonight is a good one. Maybe you should take your wig along, get some pointers or opinions.
Looking forward to seeing everybody in chat tonight! -
Hi all,
I am totally confused about the chat (I am on the west coast) but will check in periodically and am sure I can figure it out. Sounds like lots of us are having issues now, and I think it's a cumulative effect of the past 7 months or so of constant assaults on our bodies. I am praying for all of you sweet ladies to feel better soon.
My swelling is no worse, maybe a bit better, so I am not worried. The lasix seems to work. My blood counts today were just high enough for chemo tomorrow; only two more times after tomorrow, so just two more blood tests to worry about.
Stay strong all. We have the summer and fall to recover. Think of what wonderful Thanksgivings we will all have! Last TG was when so many of us were just finding out. This year we can count our blessings ....
Melia -
Mel - I am so sorry about your surgery date. I'm sure it's best in the long run and will be worth it - but what a huge disappointment. Waiting stinks.
So...for all of us time-challenged and chemo-brained women it looks like two chat times tonight:
chat #1 at 7:30pm ET, which would be 6:30pm CT, 5:30 MT, and 4:30 PT.
chat #2 9:30pm ET, 8:30pm CT, 7:30pm MT, and 6:30pm PT
I really hope I got that right!
It looks like the transcripts stay in the the chat room even after you leave so others can read them (so no talking about me behind my back in that early chat b/c I'll know...) -
Oh, Lynn....... that is laaaaaaaaaaaame! You've been through enough. Who gets port infections?! You don't hear about that. This new antibiotic had better work for you. Keeping my fingers crossed.
Rebecca, I'm saving my scarves to hide bad hair days when I have enough hair to have a bad hair day. Now that it's not unusual to see me in scarves, it's opened up a whole new world for me for hiding my hair when I'm not happy with it...which was often. Speaking of which...my Kramer syndrome...it's taller on top than the sides. What would you ladies do? Ever so slightly trim that so it's all one length? Or leave it be? The thought of taking scissors to it for even a millimeter is scary. -
Tina- all kidding aside I actually love my scarves (I have a really cool collection now!) and I plan to wear them even after....but when I CHOOSE TO not because I am bald.
As far as your hair goes...TRIM IT! I have already prepped myself for the idea that I am going to buzz it down for even-ness when it starts to get longer. It will look thicker too if it is even. I am far off from that, yet...although I do have enough hair that I could feeling waving in the breeze today! I went to the park with my good friend, and we were alone and she wanted to see...so I showed her. She just about wept with happiness when she saw how much hair I had. -
Since someone brought it up (Rebecca?) I am curious about what everyone will do with their scarves when they dont need them anymore. I have accumulated quite a few. As Ellie said, I am a bit afraid to completely get rid of them she compared it to getting pregnant after you give away the baby crib. Anyway Id thought about making covers for throw pillows with some of my favorites.
TPPJ Not sure what to suggest about the Kramer do. Maybe you can find someone to trim the top, but if it was me I wouldnt want any length taken off. I think we might all have to resign ourselves to some really bad hair days before this is over. You guys are getting me so excited about hair growth I cant wait until I have hair to complain about (oh, and I will complain Im sure). Right now my hair has no color and is about the same length as my eyelashes (and they are very stubby right now). I can still see all of my scalp.
OK off to feed the kids and leave for the LGFB class. -
Just got back from the surgeon's office. He took a look, had me lie back on the table and comes over to me with this really huge needle! OMG! What do you think you are going to do with that? He actually stuck it right into my infection to pull out some yucky stuff to send away to test. I thought I was going to die! The nurse might have part of her hand left after I squeezed it so hard. He is worried that I am somehow resisting the anti-biotic. He gave me a new antibiotic and told me if it doesn't get better in one day (redness and pain), I need to go to the hospital for IV anti-biotics...yikes!
I'll be in the 9:30 chat tonight, we are barely done with dinner at 7:30.
Still haven't caught up on posts, will try a bit later. -
Hi everyone,
So much I want to say to everyone but no time, I have to go on a 2-hour radio show (Cari Stone...no idea where) in 2 minutes so I won't make the early chat for sure, late one depends on how worn out I am. But Lynn...oh my, I will be praying that infection goes away and so sorry for the big needle trauma. Hang in there, dear! - Skye -
YIKES LYNN!!!!! How awful for you...big hug coming your way along with a sympathy shudder.
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Hi,
Jan,
so no talking about me behind my back in that early chat b/c I'll know...)
-LOL!
Lynn,
Sorry about your port infection- Hopefully it will clear up soon. Geesh- you have been through enough- it just isnt fair!! Just read your 2nd post- OMG- I got goose bumps reading about that needle- I hope this antibiotic works for you-Sending lots of hugs!
Mel,
Those shakes sound terrible- Sorry about your delay. My ps didnt even mention another appointment before surgery. I will just have pre-op testing and I guess if my blood comes out okay, I will have surgery. Hmmmm! Every Dr is different- but still- better safe than sorry.
Melia,
You are right. I am looking forward to TG.
Tina,
I'm saving my scarves to hide bad hair days when I have enough hair to have a bad hair day- LOL
My DD loves my scarves and is thinking of borrowing a few- they look so chic on her!
Gotta get to chat room -
Viddie -
Hi, thanks for letting me join in tonight. It was fun to meet several of you in real time. I hope to chat again sometime.
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Guys, I looked for you in the Staying Connected chatroom last night but nobody was there. Did you go to a "secret" location?
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Tina,
Yes Jan set us up in a private chatroom - PM her with your email address and she will send you an invitation with the link to the private chatroom site.
caya -
Hi Girls,
I'm offically half way done with rads. 15 down, 15 to go. I can say it is going by pretty fast, hope it continues when/if my skin starts to deteriorate. So far I'm only a little bit pink.
Skye, do you talk about your books on the radio show?
Debbie, it was nice to meet you too last night in chat. I enjoy the chats very much!
Not sure how my infection is doing. I don't think it's worse, but not sure if it's better either.
Joni, you must be almost done with rads? Aren't you only having 20? -
OOOooooo Lynn! So sorry you're going thru that and here's hoping it clears up REAL soon.
Mel I hope you're not too bummed out with all you're going thru and I pray it'll get better for you in a hurry.
I just came back from #10 and only 2 more to go. I saw my oncol. and told her the worst symptom I had this past few days was an absolute feeling of heaviness to my upper arms and legs and awful fatigue. yesterday I tried to do some yard work and what usually takes 1 hr or so ended up taking 4 hours due to the frequent breaks I had to take. It was like sheer exhaustion over simple tasks. Weird! Anyway, dr. says it's the chemo and it may take time, but it'll go away.
Just wondering how my other fellow taxol(ers) are doing?
take care all,
pat -
Congrats, Lynn, on being halfway done with rads. Just think of the nice long break you'll have before you have your diep - a break well-earned! And Pat, just two more taxols....and those feelings of overwhelming fatigue certainly sound familiar. Remember way back, when I was afraid you'd be sorry if you went back to work on taxol? This is what I was talkikng about. Hard to imagine, until it happens to you, that you could be that tired in that way. It does go away, though - I don't feel that way anymore, although I'm not 100% yet.
Tina, so sorry you couldn't join us for chat last night - I wondered where you were. Who knew you were out there all alone, looking for us? Hope to see you tomorrow. And thanks again for that "Summer of Ugly" phrase - I keep using it, it's so appropriate. Today I got the notice to renew my drivers license, for the first time in I don't know how many years. How nice.
Well, I'm feeling great again, and haven't given up on moving up my surgery date. I called this morning to beg and plead and explain, but they are out for a week, so I decided that I'll call again in the morning and just try to move up my appointment, without explaining. Maybe that'll work. I hope to get my drains out tomorrow - that will be wonderful, if only because then I can shower.
I have some scarves that I never wore, since I seem to have a head that just doesn't look good in scarves while bald. I thought perhaps when I get a little bit of hair, I could use to scarves to cover up the hair that isn't ready for a hairstyle yet - maybe then they won't look so bad on me. After that, I think I'll just send them to goodwill or something.
Skye, I want to know what you talked about on the radio last night, too? Is it something we can hear?
Hope everybody's having a good Wednesday. -
Quote:
Skye, forgot to mention that I am soooooo like you in that I haven't gone topless in any way, shape or form to the onc's office. For some reason, I always have myself 100% put together, looking like Stylish Chemo Patient. I do my nails beforehand, the whole bit. Why? I don't know... I guess subconciously, it's a way of denying I have this disease. Or had it. Whatever.
Tina, LOL, why are we like this? Today I had a trifecta: dentist, radiation, then Herceptin and visit with regular onc. I wore my new wig and did all 20 nails in teal blue. I guess I just want to look like I'm doing my best for myself. But I have to say that male technician bothers me. Robertin I keep thinking of you telling how your former student was observing you. I much prefer having the gals. -- Skye -
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Hi Ladies,
Well, the infection does not seem to be getting better, so I went to see Onc this morning. He has never seen an infection like this 5 days after port removal.
Lynn, this has impacted me directly! My dentist wanted to know if I should be on an antibiotic to get my teeth cleaned, and the onc said the only reason would be the port but he never gives scrips for antibiotics for ports for things like dental. Then I told him about you and he changed his mind! I will now be on antibiotics before I go back to get them cleaned. Better safe than sorry, - skye -
Quote:
Hi Ladies,
Well, the infection does not seem to be getting better, so I went to see Onc this morning. He has never seen an infection like this 5 days after port removal.
Lynn, this has impacted me directly! My dentist wanted to know if I should be on an antibiotic to get my teeth cleaned, and the onc said the only reason would be the port but he never gives scrips for antibiotics for ports for things like dental. Then I told him about you and he changed his mind! I will now be on antibiotics before I go back to get them cleaned. Better safe than sorry, - skye -
Sorry that last one posted twice, I don't know why. Also sorry to have missed the chat last night, I was starving and exhausted by the time I got done with the 2-hour interview, and needed to talk to dh a little before bedtime. What did I talk about on radio? My books, yes, and unidentified strange creatures people see such as Bigfoot. I don't know what they are but I have talked to many witnesses and collect everyone's theories. Nope I've never seen one and how I got into it is a really long story. Otherwise I'm just a normal small town bald person. (I'm saving ALL my scarves, btw.)
Which reminds me, lately every morning I've been making my dh look closely at my scalp and then tell me if it looks any longer to him. Of course he always says yes. But yesterday after he said yes he got this very thoughtful look on his face and said, totally deadpan, "You know, I think I LIKE it longer like that." :-)
8th day of rads and that side is feeling rougher already, despite using the gel. I'm getting pains again intermittently too. And Caya, I'm about to be joining you with the nausea most likely after getting my Herceptin again today too. They also told me they made a booboo last time and gave me the big 3 week dose in just half an hour. Today they took 90 minutes. Thank goodness someone checked it!
Mel, I'm so sorry you have to wait for the operation again, but hopefully this will ensure success. I don't blame you for the meltdown, who wouldn't in that situation? Your dh sounds like a real sweetie. Hope you are feeling MUCH better soon. - Skye -
I'm sending you healing prayers and thoughts from Iowa. I hope they can identify the organism and get the right medication ASAP!!
Cindy -
Today after the treatment the doctor and techs drew around my scar. They'll use that shape to build a new shield to do the last 5 treatments aimed just at the scar area. I showed my daughter and we both agreed the shape is that of a pickle. They did use a green marker.
A week from tomorrow I'll be done. I've whined about being tired before but this week I've really felt a sense of fatigue the last few days.
I am so glad it's almost over!
Cindy -
Wow, I had alot of posts to read. We are a talkative bunch aren't we? Well, I started radiation today ): I'm not liking it. I guess it's because I had a break from chemo and now I have to endure this. Now knowing this radiation stuff is a new block to walk, I had no idea that the machine zapping you buzzes for so long. I thought it was like an x-ray and not the case. They zap me 3 times in different areas for at least 45 secs a zap. I felt kind of nauseous when I left, and later I felt a mild burning inside my chest wall. Is that normal? I have 32 more to go OMG! I felt broiled today what the heck will I be like after 32 more? I have seen my Dr. this week about my leg pain, which is still going on. they took tons of blood and now she wants me to see a neurologist. Ha, they can't see me until Aug! I'm thinking why bother? I hardly can walk now! This is soooo ridiculous! I had a breakdown last night and I really feel like I just don't give a *&%$ anymore, obviously I am never going to be the same so I need to get over it. I am truly feeling the "woe is me" syndrome, Sorry.
Mizsissy- So sorry about Bunky. My Bessie is 16 and I know how hard it is going to be.
Lynn- Please get better, I still have my port and I am worried because with chemo you know it's being flushed and now it's not. No matter what I do I can't get scheduled to get it out. I have asked 4 times and still no answer! Friday I'm calling again!
I haven't seen a e-mail for the chat room. I think I got lost.
Skye- I feel so lucky knowing a celebrity, Besides that you are so funny, your posts always has something that makes me laugh.
Nuff bitching about my aches and pains, I'm going with the flow.
Hey, speaking of flow....how long after chemo does Auntie Flow return?
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