Mamas Surviving Cancer... NEW THREAD -May - Page 4 - Mothering Forums
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#91 of 245 Old 06-17-2005, 10:05 PM
 
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the port was my own personal nightmare. It took 3 hrs. and i was aware the whole time. they kept putting it in, adjusting it, taking it out-i think everyone in the joint got a chance to insert it!! GRRR.. and they put it right in the upper part of my boob! I'm not crazy about the placement.
i got bad news today-i'm not 1/2 way thru like i thought! i have to go until december, not aug. so i am devastated and crying over that wondering how my mind did that or?? i don't know how i'm going to make it til dec. dh already did all his paperwork for work so now he's mad and i'm helpless and sick. the dr. gave me one of those morphine patches today. does anyone use one? i'm sick and weak and sad. even though i have you gals i feel so lost and alone. how could i have screwed up the timeline on these treatments so badly? i don't even know if i'll have a brain when i'm done. i'm beat today. i'm sorry for my pity party. it's all hitting me hard and i'm weak right now.
as far as writing goes-if you have someone you particularly click with- pm them and ask if they are into the lost art of letter writing. I make sure and ask that 1st becuz it is very humiliating to pour your heart out on paper and get no reply at all.
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#92 of 245 Old 06-18-2005, 04:24 AM - Thread Starter
 
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myrrhmaid..... pm'ed you

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Traci
"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#93 of 245 Old 06-18-2005, 08:38 AM
 
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Oh myrrh, How disappointing. I wish I were there for a real hug. You will chip away at this one day at a time and eventually it will be done.

I know what you mean about this going for so long. My doc started talking about radiation after the surgery, and I've been looking into what that entails and it is a long time. I'll also be on Herceptin for probably a year after chemo, which is weekly infusions at the oncologist's office. If I get a mastectomy or two, I'll also want reconstruction. So, on the one hand, I'm cheering myself on because I'm over half way done with chemo, but yet there's so much more beyond that. I just want my life back!

A colleague told me yesterday that she has a suspicious lump in her breast that the radiologist told her looks like cancer. She's waiting the biopsy results. This disease is like a plague.
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#94 of 245 Old 06-18-2005, 04:53 PM
 
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Hi everyone! I'm so sorry I haven't been in touch, I just want to give all of you a big huge hug. I got a really high fever last night and was determined not to go to the emergency room (friday night--would be way too crowded!), so I've just been staying in bed, it seems to be working, I feel better but tired. I think it's just a bug from one of the kiddies, I'm taking neupogen so I don't think it's as big a medical emergency, I think my white cell counts are o.k.?

I am thinking of you all so much. I got the most beautiful card from myrrhmaid yesterday! With gorgeous photos, myrrhmaid you are so beautiful, as is your dh and ds and your adorable dd!

Sounds like we're all having a bit of a rough patch. (I guess that's an understatement, maybe they'll bend the profanity rules for our thread and we could introduce swearing into our posts! sometimes you just have to say F*&%k, this sucks!!!!) I love all of you and get so much strength, thank you for being there! I'll write more later...

love janet
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#95 of 245 Old 06-19-2005, 11:50 PM
 
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Well i'm about to go off to bed thought I'd just say goodnight and sweet dreams everyone. I'm trying to stay positive, but I have to admit I have been feeling a bit depressed, not sure if it's chemo-induced menopause? I also had a huge disappointment recently.

We had been excitedly awaiting our ds Maxwell's end of year playschool family day assembly where he had planned to sing a special solo song in addition to the group song. His teachers said he had asked specifically to sing a special song for his mom and had been practicing Twinkle Twinkle Little Star for weeks. But on the special day he woke up with high fever, which turned out to be roseola! I don't think he was too phased by missing the event but I was absolutely devastated, I cried for days, I'm still not really over it. Crazy, huh? I don't know, I guess I just feel like I want to soak up every single minute with my kids, I'm so terrified of missing anything, my heart is just bursting with love for them.

Although, we were lucky enough to eavesdrop at the gym door for a moment the day before when the kids were practicing. They were all going up on stage one by one saying why they loved their parents. The kids before Maxwell went up and said things like "I love my mom and dad because they take me to the park". When it was Maxwell's turn he went up and said "I love my family because they let me watch Castle in the Sky" (A japanese-animation film by Miyazake (Spirited Away director) that's not exactly age appropriate for a 3-going-on-4-year-old!) OOPSY!! Oh well, at least he's honest!

Anyway, let's all try to stay positive, relish every moment, and remember that we are ALL beating this crazy thing we've got. We're all going to be around for a very long time!!

love and kisses, janet
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#96 of 245 Old 06-19-2005, 11:55 PM - Thread Starter
 
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here, here Janet..

I know I am sooooo anxiuos about tomorrow to get my PET results...It is making me and dh both crazy.....I hope I can sleep tonight...*sigh*

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Traci
"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#97 of 245 Old 06-20-2005, 12:03 AM
 
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Traci!!! I am sending you all my love and healing energy, PLEASE don't worry, YOU ARE BEATING THIS THING!!!! I love you!!!! xoxoxjanet
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#98 of 245 Old 06-20-2005, 08:43 PM
 
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Sorry I've been away for a while. I'm actually in the good couple of days before chemo. I've been enjoying my sister & her family who were visiting from out of state. What a treat!

Awww, y'all, this does just suck so much. There are definitely some positive things that have come out of it so far for me, but I certainly wish there was an easier way to learn those lessons.

Myrrh, hope your mood has turned more positive.

Janet, did you get on top of that fever thing? All my materials say to call the doc if I spike a fever. So sad that you missed the big performance. Have you heard ds sing the song?

Traci, really sending out the positive vibes to you.

Round 7 Wednesday....

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#99 of 245 Old 06-20-2005, 10:54 PM - Thread Starter
 
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Well, I am not done...
PET shows spots everywhere I had tumors. Main concern is under my left arm b/c it is at a level 9. I guess if any of the spots are at a level 2.2 they do not require further treatment(?), but due to this node being on the "higher side" I have to continue chemo.
So my neck chest and groin are still afflicted. Not growing any bigger, smaller by far yes, just not gone like they need to be.
Feelings are reeling...feel kinda numb....
I have breathing tests and heart tests scheduled all this week to determine what kind of chemo we will do. I may get more ABVD or I may get the Standford T, which is 6 weeks of chemo straight~ every week for 6 weeks. Will know Friday....
check back when I can

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"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#100 of 245 Old 06-21-2005, 12:37 AM
 
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Traci, I'm so glad things are shrinking & so sad that the tumors are not completely gone. I am sending thoughts, hopes & prayers of peace, strength and comfort your way.
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#101 of 245 Old 06-21-2005, 08:15 PM
 
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Traci, I'm so sorry you have more chemo to face. But like auntieM said, I'm glad that the chemo IS working on your tumors--just not as fast. We try to be optimistic and it's always a let down when things don't turn out the way we want them to.

I go for round 6A tomorrow, as I'm now calling it, since I need two infusions per cycle. I had my first round of Taxotere and Xeloda last time. The AC had stopped shrinking my tumor, so I was glad we moved on. I'll find out if the first cycle did anything useful tomorrow. The lump feels very different to me, but I'm no good at telling if it's smaller or not. My oncologist always asks me if it's gotten smaller before he examines me, and he can never get me to commit to an answer. It's a running joke with us.

Those of you who have breast cancer, have you ever known anyone who has had a DIEP reconstruction? It's like a TRAM flap, but doesn't use your abdominal muscle, so you don't lose strenghth there. I'm suspecting I'll end up w/a mastectomy and I'm looking into my options. I'm finding lots of very positive stuff on this procedure on the web, but there don't seem to be a lot of surgeons outside of Hopkins and New Orleans Breast Reconstruction Center.
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#102 of 245 Old 06-21-2005, 09:10 PM
 
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Traci, I'm so sorry that you'll have to do more chemo, but don't worry, they'll get it rid of everything this way and then you'll be totally clear! Please stay positive!!

I was searching around on the internet earlier, feeling a little down, and I found this great quote by Lance Armstrong (the amazing many-time Tour de France winner who beat testicular cancer after it had already metastisized to his lungs and brain). It really cheered me up and gave me hope, I think I will have to go and buy his book...

"The definition of courage is: the quality of spirit that enables one to encounter danger with firmness and without fear. It is a fact that children with cancer have higher cure rates than adults with cancer and I wonder if the reason is their natural, unthinking bravery. Sometimes little kids seem better equipped to deal with cancer than grown-ups are. They're very determined little characters, and you don't have to give them big pep talks. Adults know too much about failure; they're more cynical and resigned and fearful. Kids say, "I want to play. Hurry up, and make me better." That's all they want. If children have the ability to ignore odds and percentages, then maybe we can all learn from them. We have unrealized capacities that sometimes only emerge in crisis. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. So if there is a purpose to the suffering that is cancer, I think it must be this: it's meant to improve us. I am very firm in my belief that cancer is not a form of death. I choose to redefine it: it is a part of life. One day I made an acronym out of the word cancer: Courage, Attitude, Never give up, Curability, Enlightenment, and Remembrance of my fellow patients."

Beautiful eh?

love janet
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#103 of 245 Old 06-21-2005, 11:08 PM
 
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Janet, that was fabulous. Thanks for sharing.
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#104 of 245 Old 06-22-2005, 07:59 PM
 
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Janet, that's a great quote. Let's all fight like hell!

Round 6A was a breeze, but I imagine I'll be tired this weekend, and it's looking to be another hot one.

Best of all, the tumor is shrinking again on the Taxotere/Xeloda.

I've been starting to grow some fuzz on my head and I asked the oncologist about it, since he'd told me the hair loss would likely continue. He said sometimes people's hair folicles adjust to the chemo and start up again, and the Taxotere wasn't as hard on hair as the AC. I told him this probably meant dh and I need to reconsider our current Halloween plans--Anna and the King of Siam, but that's OK, cause I haven't seen any dress pumps in a man's size 13 for dh!

I'm getting some funky toenail action from the Xeloda. I'll probably lose my nails on my big toes and probably my thumbs. Ahh, the new and exciting side effects--what an adventure!
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#105 of 245 Old 06-23-2005, 03:17 PM
 
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Hey Mamas!!!

I am such a dork, I just realized I hadn't heard from the group for a while, and discovered this new thread. I skimmed through (I'm supposed to be playing legos right now) and I just want to tell you all that you are strong and wonderful women!!! I read what you are going through and cringe, I look back and think "how did I even get through all that?!" but you do what you gotta do.

The cravings (strong cheese) and steroids and lack of exercise threw on about 35 lbs, and I've only managed to loose 7 over the past 6 months. So frustrating!

I had an art show recently, and they wrote about me in the paper!
http://www.oregonlive.com/metrosouth...l=7&thispage=2

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#106 of 245 Old 06-23-2005, 05:34 PM
 
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EFMom, I've sprouted a couple of hairs on the taxol too. They're not growing very much, but they're there. Do you have a good cream for your hands & feet? I've heard that helps with the Xeloda.

Owensmama, so nice to hear from you. It is so great to have the perspective of those who have "been there" to go along side those who are "there" now. Great article!!! I went to the spiral gallery web page & saw 3 of your pieces. It left me wanting to see more. I really liked them.

I'm feeling pretty good today. I expect the yuck to come in the next day or so. I also expect it to go away a few days after that.

Traci & Myrrhmaid, how are you doing?

Sending thoughts of & praying for healing, comfort, peace of mind & joy.
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#107 of 245 Old 06-23-2005, 11:34 PM - Thread Starter
 
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doing ok ...trying to to have a major freak out week...so ativan and I are close friends this week...I hate pills but I really need help getting a grip this week...

My tests are done for my lung and heart and I will get my results Monday now instead of tomorrow. So we will see if they think my body can handel more ABVD or if I need to go fro the Standford V. which is to be less harmful as side effects go...

Owen'smom so cool about your fame...I am so happy for you ..would love to see your pic Stars that the article talks about....

Thanks for sharing that quote Janet

AuntieM and EFmom thanks for your words

gtg
bbs

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Traci
"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#108 of 245 Old 06-27-2005, 12:12 PM
 
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Thanks!
That painting is here (along with my others) -
http://hi-fidesign.com/Portfolio.aspx?view=paintings
It is the first one on the page, you can click on them for a bigger picture.

Ok, back to everything not being about me!


Don't worry mamas, you will feel better! We went camping this weekend, and I could hike around without feeling like I was going to collapse from exhaustion. I said to dh - "remember when I could barely make it up 2 stairs to get into the house?"
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#109 of 245 Old 06-28-2005, 02:00 PM
 
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Thanks for sharing, owensmom.

Just wanted to say "hi" to everyone.

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#110 of 245 Old 06-28-2005, 09:04 PM
 
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Hi everyone! how is everyone doing? It is HOT here, definitely not good wig weather! Owensmom, I loved reading the article and looking at your paintings. They are very beautiful. You are very inspiring! (I am also a visual artist and have just started doing a tiny tiny bit of painting again, seems to have been on the back burner since having kids, but I think I'm getting ready to reincorporate it into my life, it feels very healing.)

Also, for a little bit of "Wow, small world" my ds goes to nursery school with ds of Dave Bidini of the Rheostatics, I noticed you had had a reference to the band and a song in your "Shaved Head" painting. I told them about it at the end of school picnic today and they asked for the link, just emailed it to them!

Take care everyone, I'm sending love!!!!

love janet
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#111 of 245 Old 06-29-2005, 01:36 PM
 
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GET THE F--- OUT!! Dude, we love the Rheos. We took a trip across Canada from Oregon about 8 years ago and made a detour from Toronto to Peterborough to see them play a double set. We own and adore both of Dave's books. OMG OMG OMG. Sorry, I just turned all fangirl freak out here. I almost named the painting "I Am and I". Erm, tell Dave I said "hey". This just totally made my day.
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#112 of 245 Old 06-30-2005, 01:02 PM
 
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I love those "small world" connections!

Well, it finally happened. I reached a point the other day where I got tired of dealing with all of this .....stuff. It lasted about half the day & included me biting off poor DH's head. I have one chemo left (so long as the path report is clear). After that, I've got surgery & radiation. It'll be quite a while until I'm done. I know that you all understand where I'm coming from. Most of the time, I feel pretty on top of things. The other day, I was just plain tired of it!

I noticed peach fuzz on my scalp the other day. It seems like my hair may be coming back. It's getting to the point where I can almost count my eyelashes. What's it like when they start growing back?

Traci & Myrrh, haven't heard from you two in a while. You ok?

Great big hugs, love, healing & comfort to you all!
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#113 of 245 Old 06-30-2005, 02:04 PM
 
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auntieM, I have heard that, alas, the eyelashes are among the last things to come back, at least for many people. Mine are funny. The long ones all fell out, but I have a row of short ones that stayed in. I could probably make them look better if I used mascara, but I'm afraid I'd get styes if I did, so I make due by wearing eyeliner.

My fuzz is now about an eighth of an inch long. It looks like it's going to be largely gray on the sides, boo, and baby fine, where it is usually pretty coarse. My dozen or so sprouting chin hairs are back, as thick and coarse as ever. I had to tweeze them off for the first time since chemo. Why don't they take forever to come back? :LOL And I'm needing to shave my legs from time to time again.

I finished my 6th cycle of chemo yesterday. I'll be done in mid August with number 8.

I'm looking at surgery and radiation, too. I'm sure I'm going to want reconstruction, too, but am not sure of all the sequence of things... Looks like kicking this thing is going to eat up a whole lot of time. It seems like just as we are getting to the end of the chemo tunnel, there is a whole new tunnel to climb through!
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#114 of 245 Old 06-30-2005, 02:35 PM
 
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My eyelashes and eyebrows are really light blonde, so I didn't even notice they fell out! I went to put on mascara and there was nothing there. I remember when my peach fuzz was back, I was like "screw the wig!" I have pictures of myself at my friends wedding and I looked at them recently and thought "oh geez, I went out in public like that?!?!" I thought I had so much hair! :LOL
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#115 of 245 Old 06-30-2005, 02:52 PM
 
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Quote:
Originally Posted by owensmom
I thought I had so much hair! :LOL

Oh, I know that I don't have any hair. I don't wear a scarf any more & only rarely wear a hat. When I did have hair, I didn't fuss with it much. People say I'm brave to go sans cover, but I don't think so. I don't really see myself, so I don't get shocked by what I look like. Occasionally, when I'm getting ready to go out, I'll have a thought like--oh no, I'm going to mess up my hair when I put my shirt on. :LOL It is nice to be able to get ready so quickly. I do think that when I have my hair back I'll spend a little more time/thought/care on having it look nice. I won't be so fussed about what a good hair cut cost.

EFMom, don't worry too much about what your hair is growing in like now. I'm told it takes a while to equilibrate.

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#116 of 245 Old 06-30-2005, 09:10 PM
 
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Yeah, I would make the motion of tucking my hair behind my ear, even though it was 1/2 an inch long. D'oh!
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#117 of 245 Old 07-02-2005, 04:28 PM - Thread Starter
 
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Hey girlies..

I am just now feeling better after my chemo on Monday. Decided to stcik with the ABVD I was origionally getting as they did offer me a clinical trial of Standford V but it would be chemo ever wekk for 8 weeks...not as strong as ABVD but nevertheless sick and tired every week..at least with this 2 week regimend of ABVD I can get at least 1 well week in between chemos. So I have 3 treatments left to kick out this last little bit of *c* and then I pray I will be free...Aug 8th will be my last treatment.

So, we cancelled our vacation to the beach, which we were due to go tomorrow, because we anticipated me being sick from chemo..well now dh and I are looking at each other and kicking ourselves because I am feeling pretty good and probably could have tolerated the trip anyway..but then if I would not have cancelled, I would of probably been really sick from the chemo and we would have lost our deposit $$ on the room.
Dh stayed home this week with me too so I guess we need that money that will be missing now from his check....
we decided too to plan a winter beach get away instead of this vacation, God willing I am done with chemo then, but today I just feel like I want to get away now...tired of my 4 walls and tired of Ohio.

On the hair issue..mine is coming back in pretty good very dark and lots of grey...I had some grey prior but not as much as I am seeing now..I actually bought some color today to color what I have coming in because it is so dark.
I have been going without headcovers too, it has been just too hot and the chemo has been giving me an attitude from h***, as this added weight and no hair just aren't working for me any more. The two things that for a woman are the most maddening.
Isn't it awful you think I would just be happy for life and not be so vain today....

Myrrh hope you are doing ok

sorry for all the typos you guys but I just do not feel like going back and spell checking today...wish MDC could offer that on these posts...spellcheck?? are you here? lol...
gtg
Thanks for listening
I will try to be more positive

Free To Be~
Traci
"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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#118 of 245 Old 07-02-2005, 06:06 PM
 
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Traci, darlin', you don't need to be positive for us. Please go ahead and vent any old time--that's why we're here. So sorry your vacation didn't work out.

I'd be interested in hearing how the hair color comes out as I can't wait to do mine. I've heard that it can be a while until the color will take, but some people don't have a problem.

I know what you mean about not knowing what you'll be up for. My cousin hosts a family reunion every year. I have a huge extended family--it's usually 200+ people, and it is tomorrow. All my sibs have been phoning me about my plans. Plans??? I might go if I feel up to it. If it's going to be 90 degrees out though, I'm staying at home in bed. I feel bad because people come in from out of town for this, but I just don't know how I'll feel. The weirdest is that my sister, who is a bc survivor herself, has been badgering me non-stop. They mean well, they want to see me, but it all just makes me more tired.
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#119 of 245 Old 07-03-2005, 12:48 AM
 
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I totally agree EFmom, Traci please don't worry about venting. I'm so sorry about your plans, it's so hard to know what one will be up for. This is such a roller-coaster ride.

I should be falling down now but I think I'm on my 15th wind, it was Maxwell's 4th birthday today (!) and because I am really dumb I decided a couple of weeks ago that we should have a big party for him with 30 people (about 10 kids and their parents and our families), and then yesterday I got really sick, fever and exhaustion, oh dear, but I decided to be in denial about it and it kinda worked, it actually was a beautiful party, we had it in the park near our house, with lots of yummy food that dh made, champagne punch, table cloths even! (I'm a bit obsessive with party details) There's a wading pool in the park for the kids and a playground and we even rented a tank for helium balloons and I painted a big happy birthday banner to hang in between the trees, and made a giant birthday cake, it was a really great day and I somehow managed to not have to just lie in the grass under a blanket. It might be because I decided to take 2 advil this morning, and wow did they ever work! although I'm not sure if I was supposed to but I was desperate, I didn't sleep last night because of the fever. Anyway I don't know what I was trying to prove having this big affair, I mean it was fantastic but kinda crazy and I am definitely suffering for it now. But I guess I don't have to explain all the emotions surrounding a birthday for your child, you know with all the uncertainty of the future, no matter how positive one tries to be...

I am feeling VERY emotional. maybe chemo-menopause? maybe exhaustion? The other bad symptom I have, I don't know if you guys have experienced this, but starting about 5 days after chemo the skin on the soles of my feet feels like it is being poked by daggers and it is excrutiating to walk. Ouch! The advil definitely helped with that though, I can't believe I hadn't thought of taking it before! Anyway, I don't know if this getting a fever a week after chemo is a pattern or a coincidence, I keep thinking that because I'm taking neupogen I'm not at risk for infection but maybe I am. I'm too scared to ask because I don't want go to the hospital or take antibiotics. The other most terrible symptom I've had from the beginning of treatment is being stuffed up all the time which has lead to constant post-nasal drip and spasms of coughing all the time. It is driving me crazy!!!! I am taking a steroid nasal spray now but it hasn't helped much.

On the hair front, I am completely bald now, I shaved the weird stragglers that never did fall out, so it feels better. Thing is about the wig though it looks so damn good, I like wearing it (when it's not too hot) I want my hair style to be just like it when it grows back, but it will probably take a lot of colour and stylin', fake hair has it's advantages!

I should really go to bed, but I guess I'm still so hyped from the day.

I was wondering EFmom, is the second part of your treatment similar to Taxol? Are the taxotere and xeloda only available in a trial? I will be starting taxol for the second half of mine next week, but I don't think that's the same as what your doing?

Owensmom, dave emailed back and thanked me a lot for the links to your painting...

AuntieM--Hi!!!

Myrrhmaid, how are you? Have you received my letter yet? I hope so. I hope you are feeling o.k., I'm thinking of you everyday. Check in with us when you get a chance, we're all sending tons of love!!!!

O.K. Bedtime!!!

xoxojanet
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#120 of 245 Old 07-03-2005, 07:33 PM
 
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Janet, taxotere is very similar to taxol. I would have been on it without the trial. The clinical trial part of it is adding in the Xeloda, which is now normally only used for metastatic disease, to see if it's useful in non-metastatic situations.

Taxotere also can cause the foot-mouth syndrome you describe. My onc gave me a prescription for an ammonium lactate foot cream, and so far, my hands and feet have been ok, except that I think I'm going to lose the toenails on my big toes. That's also a potential side effect of taxotere. My sense of taste is also fairly wacked out. Everything I eat tastes sort of like Ivory soap. Yum!

The bd party sounds like it was great. I know what you mean about thinking about the future. But please, be careful if you think you have a fever. I would hate to see you end up in the hospital if you don't need to be, but I would hate much more to see you really get in trouble. My onc has emphasized very strongly that if I run a fever of 100.5, I must see him ASAP or go to the emergency room. The neupogen helps boost your counts, but unless your counts are normal, there can be problems. OK, I'll MYOB and stop trying to mother you now! :

I love my wig, too, and am going to try to get a style like it when my hair comes back. The things we will do to find a new do!

I wimped out of going to the family reunion. Too tired. It was kind of nice to have the day to myself and do some power napping, but I want my life back!
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