Starting Chemo in June 2005

My wig came today from PaulaYoung - it's way too big! I ordered a large size, since I can never buy a hat off the rack to fit. It's ok around the head, but I could stash a small child up under the crown. Looks sortof like Marge Simpson, only not blue! So I rushed out to a local wig shop and tried on wigs, found something that looked ok, then came back and reordered from Paula Young. The one at the store was $230, and the Paula Young is $39. But this time, I get to pay for rush shipping. At least I know what size to order.

Got my first bill from the hospital for all the charges from DX through first chemo 0 $59,000 and change. Thank goodness for health insurance! I will have to pay more than I might have, because DH's company switched carriers on May 1, so I have to go toward the $1000 max out of pocket twice. Could be a lot worse, though! I'll just put them on the automatic payment plan and pay from now till doomsday, I guess.

Liz!
You sound a lot like me so far. My appt was at 3pm and I was out by 5. I feel a little headachy but other than that, so far so good.
I'm not supposed to start my zofran until tomorrow am because the stuff they put in my IV is supposed to last that long.
Of course my ex husband chose today to discuss the reduction of child support since my daughter graduated. He's paid me VERY well over the last 15 yrs, but now with this bc stuff and college costs, the reduced payment is gonna hurt. I got a little emotional on the phone and it made my head ache even more!
But I"m good. Take care!
Sorry I whined so much.

Hooray Liz and Watson you did the first one. Glad to hear it went well and you are both home doing fine.
Watson the timing of your ex's call is the worst.
Arghh!
I got my courage up and called the head chemo nurse today. She said she will do my next treatment and we talked through strategies to avoid what happened the last time.
Then I called the pharamcy and they said they could get the LMX cream for me by tomorrow.
So when I have my next session on Weds. I have some things in place that should help.
I tried to shave my head again today . I nicked my ear in thr process. So I am just going to let it come out on its own now.
I do have a wig question though....
How can I get it to be comfortable on my head. I usually can manage abouut 1/2 hour and then I pull it off.
I know my scalp is sensitive now but I wondered would a wig cap help?
Right now I have a jaunty ( a word I seldom use) beret on. It looks less like a cancer cap.
It feels good too.
Oh and Saleboat I am glad the acupuncture worked well for you.
Dana.....You are very kind . I feel a bit of an imposter posting my pre-cancer picture. I happened to have it in jpg form so it was easy to do.
I feel like I look like that but I probably don't anymore.

I just love that quote! I feel like that sometimes. I am not minding losing my hair because I am new chick!
I wore my wig for the first time today and it was OK-little hot, I'll have look for the cap thing.
You know what I am jealous of? My husband! He decided he couldn't part with his head hair so he shaved his mustach and he looks 10 years younger! No fair!
best wishes to all

Slept well except for a few bathroom trips getting rid of all the liquids I've been guzzling. So far, so good. Going for Neulasta shot this AM. Plan on going into work after shot if I feel up to it. I figure if I go in, I can leave if I start feeling badly.

I don't know what else they put in the IV...I'll have to ask about the decadron. I put a little ice thingie (a small one they gave me after a biopsy) on my port area on the way over to the doctor. Don't know if that helped, but only felt a slight pinch from the needle. Got a little nervous as the nurse was having trouble lining up the port...seems it was "floating". But once she lined it up needle went in quickly and port was running smoothly.

Have a great Friday every one!

Liz

Good morning, ladies! You Thursday girls sound just like I did last week. The good news is that by this time next week you will hopefully be feeling back to normal! I know everyone is different, some of you may bounce back faster than I did. Just knowing that feeling normal is possible is helping me be able to face chemo #2 next week. A few days ago I was refusing to ever go back!

So far, 100% of votes are for getting together next year. So exciting! So, are we thinking June? Everyone will be done with treatments, school will be finished, weather is good? Let me know if anyone doesn't agree with that, or if a particular date won't work.

We can be democratic and pick the destination that is mid-point to everyone (that's what I was thinking yesterday) or would you all like to vote on a "fun" meeting place?? I know many of us don't have extra money just laying around for travel, so I want to be considerate of anyone who can't go due to finances. You could private message me if that's the case, and we can figure something out.

Let me know what you think in your posts. Right now it's fun to think of it, but I guess any serious planning should wait until spring?

Well, I pulled a bunch of junk out of not one, but two closets yesterday. I ran out of steam before I finished organizing....my poor husband last night said "if you don't finish tomorrow, it's really OK" because he thinks the piles of stuff will be around untill I finish chemo in September... So, I better get goin'...I hope you all have a good day. Be gentle with yourselves today, Thursday Towandas!

remember me ladies,.no I didn't drop off the face of the earth down here in Oz

just popping past because this is the first time since my chemo back on the 16th that I've been able to do much at all, guess what they say about the younger ones being able to handle it well isn't always true afterall. Talk about knocked for 6. (err maybe you have to be aussie to know that saying not sure there sorry)

The sad news is I did the maths today and its only 13 more days until the next one ..,..oh my

But the good news is, i've worked out I can drive myself around after dark as the motion sickness isn't as bad as during the day, less to look at or something? So I have a little independence again and mobility, thank heavens for supermarkets that open to 10pm.

This stuff is weird, weird I say, but, last monday was my hit the wall day when I said I don't wanna do this any more, and I've started the uphill climb to the next one.

Glad to know most of you are having an ok time,

thanks for the words that have created some smiles.

Fi

I don't have a spread sheet. I have been journaling daily for years so I put all that information in the journal along what ever else is happening. I think this system works for me because I tend to be a verbal processor.
I was so glad to hear from Fi. since you shared you were a single mother I kept wondering how you were coping.
Please check in with us when you can.
Today I wore my beret for the first time . When my daughter saw me she said "Look Mom's joining the army!"
I was so glad we could laugh about it.
This afternoon I went to a peony garden in full bloom.
That was heaven.
I came home and napped all the rest of the afternoon.
I continue to eat lots but am loosing weight.
I don't get it.
so I asked my brother who is visiting to pick up some treats for tonight.
something chocolate and naughty.

I had my first chemo on wed. thought it went ok, but we will see. had to take the anti nausea meds in the middle of the night and last night i had to take an ativan to get it to stop...and I still didn't sleep well at all. My mind is still racing with all of this stuff. The port was put in tuesday and the port doesn't hurt as much as the node surgery which was the friday before!
Anyone else feeling wierd...sort of spacey?? It's like I am in a fog...not sure if it's from lack of sleep or the drugs...or the chemo!
I'm trying to drink alot, but i still have a hard time doing this. Decaf tea is what i am drinking now, along with some light hawaian punch.
I have a dr's appt for the node surgery on the 28th, see the surgeon for the port on the 29, and have my ct's and body scans on the first. All I do is go to the doctors!!!
Anywho, I've been reading up on what everyone is doing and you all have given some great advice and suppport! Just know what I am here, but sometimes just too dang tired of depressed to chat.
My next chemo is on july 14...one down and 5 to go!

Sounds like everyone had a pretty good week. Mine continued to improve daily. Busy at work and seem to be slipping back towards the 50 hr week plus 10 hrs of commuting, but have no plans to continue that pace-I have accepted the 3/4 time position I previously had as the director of the health information (medical records) program at the college, which since I previously had gotten all the classes distance I will be able to do all but some administrative stuff from home, I have to tell my current employer on Monday and am not looking forward to that (I think I'm indispensible, and really would like to continue part time but my definition of PT not cutting back to 36-40hr/wk). My son and fiance from Seattle will be here on Wednesday for a very good friends wedding next weekend so am looking forward to that! I am having a tough time adjusting to the wig too! 1/2 a day is the most I have gone with it! And now that I have a VERY BAD haircut, the falling out seems to have slowed down. I decided on Wednesday that I would take one nausea med every morning and see if that helped as I just hadn't felt good-but when I got to work I couldn't remember if I had taken it or not so took one-I was so sleepy for awhile I am sure it was the second one that day, but I haven't taken any since and have felt really good. I should document everything, but seem to be much better at telling people to do that than I am at getting it done. Have a great weekend and will try to log on everyday.
KimB

Michelle, I feel fortunate that I haven't had much queasiness, but I have felt very blah...and kind of foggy brained. Some stuff that I do at work I actually had to look up because I forgot things that I do every day. Tonight I am very tired, but tried to sleep and couldn't so decided to check out this board and my email,etc.

Scout...great news about your nodes. How did your anniversary go?

I am also starting to feel yucky about the idea of losing my hair. Has anyone experienced feeling depressed from the chemo?

Liz

Hey Liz,
I feel kind of out of it at times and the first night of chemo (yesterday - just like you) I felt reallly depressed. I think today I've just been so busy that I've been okay. I did a wig preview for the neighbors. Of course they all said it looked great. Who's gonna tell a woman with breast cancer that her new hair looks like crap! lol You're on dose dense, aren't you? I go every three weeks so no neulasta shot but you'll be done before me!

I keep having this real chalky taste in my mouth. What's that?

Scout, so happy to hear about your nodes! Did you make it to that Cards game? That was you who posted about that, wasn't it? I sat home and watched the Astros on TV. Much cooler! lol
Take care ladies.

Where are my Towandas tonight??? Oh! they went BACK TO WORK AFTER CHEMO! Geez Loueez! You girls are tough chicks!

For those of you who are back to work immediately I must inform you all that Towanda has a last name.... and it is Unger. As in Felix Unger. You ALL need to be extremely careful about germs and people who are coughing and sneezing etc. Your immune system is being knocked down so you will not be able to fight the germs like you used to. And on chemo a cold can turn into pnuemonia ( can't spell that word at 2 AM)
Get Purell or other distinfecting hand lotion...spray lysol on your phone, doorknobs, husbands and cats.

That taste in your mouth...YUCK. Everything tastes like metal. And for some everything will then lose its taste. This is temporary. I swear!
A swish of mouthwash every so often helps get that chalky feeling out. Also biting into a lemon wedge gets your taste bud's attention too. Now SOME of you might develop a white coating or sores in your mouth. Then you have to call the onc and he gives you an RX for a special mouthwash that works great. If you have an oral yeast infection they will call in Difulcan too. NOT EVERYONE WILL GET IT- but if you do it is survivable AND Treatable.

Got a headache? It is the cytoxan if it is within 24 hours of your infusion. Getting Benadryl and Extra strength Tylenol during the infusion helps. Also that cytoxan must run veeeeeery slow.

Foggy days are normal and are to be expected. If you are on anti nausea drugs they help keep things foggy. It is temporary!

Your hair...the worst. Your beautiful hair. The best way I can help is by telling you that if you think of a cell with legs like a spider and chemo comes in and knocks out the legs that make the cell mature, then the legs that make it able to divide and then the legs that control the follicle of your hair. By stopping the cell from being able to divide and mature what chemo is doing is killing the cancer in your body. BUT the follicle gets nailed too and so we lose our hair. If you KNOW that your chemo is killing the cancer cells in your body and an unfortunate consequence is your hair loss would you stop? Which do you want to grow back? Your cancer? or your hair? Do the chemo and the cancer is GONE. Your hair will be just under an inch long by September. It is giving up it's shiny Breck girl beauty for YOU. Get the best wig you can find- or check out Heavenly Hats for FREE NEW hats for new BC patients...before you know it you will be saying my new hair looks so weird! It goes back to normal. Hey I was walking around like Rod Stewart with his finger in a light socket the way my hair grew back. BUT IT GREW BACK!

If you are REALLY HOT come home, take the wig off and put Sea Breeze on your scalp....It is great.

Depressed...why? Why on earth are you girls getting depressed? You were only diagnosed with a like threatening disease, have had multiple surgeries and now they have you chained to a schedule that seems that there is no end in site. OF COURSE YOU ARE DEPRESSED! Start a calendar where you check off each treatment and see how escited you get when you see how close you are to being DONE!

Feeling better about yourself and your situation takes some time but there WILL come a day when you DON'T have to go to the doctor and you don't have anything more done to you and you wake up and find it is the first time you haven'te woken up with the thought "I have cancer"

You can run and hide from it but it comes with you. Confront the beast- kill off ALL OF IT-and one day you will say " I am so glad I did chemo!"

One step at a time girls - don't project in to the future think only about what needs to be done TODAY. And by the time tomorrow comes you will be DONE!

Hang in there Junesters...YOU CAN DO THIS!

Hi Ladies,



I had my first tx yesterday and as the infusion goes, it when very well. During the AC I ate ice chips and popcicles and during the cytoxin I sucked on jolly rangers. I felt pretty good when we left, but about 2 hours later I became extremely nauseated and vomited on and off for several hours. I was miserable! I tried the compazine and then the ativan to get it under control. The ativan seemed to do the trick. I was able to sleep pretty well and woke up this morning only slightly nauseated. I will be sure to report this before my next tx so we can try maybe a different combination of antiemetics. I first I was very discouraged but then realized that everyone is different and I just need my meds adjusted. We'll see how the day goes. About the hair thing, it has always been my worst vanity spot. I was always messing with the color and style and just never could get it the way I liked it. It has always been straight and thin. I don't even remember what my natural haircolor is!! lol I decided to look at this as a way of starting over. I found a wig exactly the color that I had always wanted to have and thicker than my own. I don't think I could handle waiting for my hair to come out in clumps, so I decided that next Saturday I will go in and have my hair shaved and have my wig cut and shaped to the hairstyle I always wanted. And the best part, I don't have to worry about getting trims! I feel at least in this, I have the control! HA! Believe me, it takes a lot of courage to do what we have to do, but we are all fighters and every step forward is a victory. My DH did the sweetest thing this week by providing me with something to look forward to at the end of treatments. He booked a carribean cruise for us in January! I can't wait! I think that this is a great idea for all of us no matter what it is you chose, have something to spur you on to the end of treatments. A small trip, a special dinner with friends, anything that gives you the light at the end of the tunnel. So here's to all of us Junies making it through this will flying colors and lots and lots of humor!