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#61 of 245 Old 05-27-2005, 11:57 PM
 
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Traci, I cannot type now either. It can be so frustrating. No, I don't have a port. Venapuncture is painful, but not overwhelmingly so. It's a pain of the moment, not a lasting one, KWIM.

I have only had a couple of people ask me if I am undergoing chemo. In both cases, I wasn't bothered by it. I think it was the individual situations--both were very warm, kind, solidarity kind of women. If I was totally concerned about not having someone bring up the fact that I'm undergoing chemo, I would probably wear a wig. I spoke with a woman the other day who felt that way. She was still working & didn't want to have to address her health issues with her clients. It seemed both sad--like she might be either embarassed or depriving herself of support & self-protective (in a good way) all at once. You are right, Traci, it's hard for a bald woman to go unnoticed.

Do you think of yourselves as sick? I don't. I understand that I'm not completely healthy, but I don't think of myself as sick...

I hope that I don't re-read this & find that my tone was way off or offensive. More importantly, I hope that you all don't feel that way.

I hope that you are all ok. I cannot seem to form any more cohesive thoughts, so I suppose I should just sign off.

Great big warm hugs, healing vibes & wishes of joy & comfort.
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#62 of 245 Old 05-28-2005, 12:05 AM - Thread Starter
 
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Quote:
Originally Posted by auntieM

Do you think of yourselves as sick? I don't. I understand that I'm not completely healthy, but I don't think of myself as sick
You know what AuntieM, you hit it right on the head for me...this has been the biggest struggle for me...I know I was *sick* before I was diagonsed...I had awful symptoms that come along with HD..night sweats, fevers, ect and felt reeeeeaaly bad...but now that those are gone and I do not see anything wrong with me except the baldness..it seems kind of not there..the feeling of being reallysick


Quote:
Originally Posted by auntieM

I hope that I don't re-read this & find that my tone was way off or offensive. More importantly, I hope that you all don't feel that way.
I don't feel like that at all.... auntieM

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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."
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#63 of 245 Old 05-31-2005, 12:40 PM
 
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Yeah, that being sick thing is a strange one, I didn't have any symptoms before I found out I had advanced breast cancer, and it's only the chemo now that is making me feel sick so it all in fact seems a little surreal. (Except of course for the fact that one of my breasts is gone--that makes it feel a little more real!!--although honestly, I am still feeling very o.k. with that loss)

Myrrhmaid I have joined you with the medical mj, I was kinda reluctant because I had never enjoyed it much socially myself (although I 'm really cool I swear!), but my docs convinced me that when you're using it to treat a heavy-duty symptom like nausea, you probably won't get overly buzzed (which would be a little impractical looking after a baby and a 3-year-old!) and that's exactly the way it's been. It's a pretty low dose pure THC, comes in a pill form here in Canada. I'm taking it 3x a day and have had ZERO nausea! What a relief compared to the first round.

So my mohawk has now mostly found it's way down the shower drain...well it was fun for the week it lasted. Even though I felt super-mentally-prepared for the hair loss, I have to admit it's a bit of a freak-out. The transitional patchy bald thing is a bit undesirable. I've been rubbing it off, did anyone resort to light waxing or the like? I think I'd rather have a purely smooth head! Better that those little prickly hairs falling out everwear and getting stuck in your clothes! Advice anyone?

Anyway, I wanted to end by just saying how proud I am of all of you for all the courage and humour and I love you!!

Janet
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#64 of 245 Old 05-31-2005, 04:24 PM
 
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Do you think of yourselves as sick? I don't. I understand that I'm not completely healthy, but I don't think of myself as sick...
Boy, that's a funny one. Most of the time I feel pretty good and don't feel sick, yet at work I'm sort of isolating myself from big groups during my immune compromised times. I actually look pretty good--probably better than I did six months ago. I'm not a particularly vain person, but how I look seems more important to me now than it ever did, go figure. I get compliments all the time. My wig is really flattering--I'm going to do something similar with my hair when it grows in. I pay way more attention to makeup than I ever did. Prior to getting diagnosed at a routine checkup, I'd lost about 20 lbs, so I was feeling great about myself and more energetic than I'd been in ages, so "being sick" came as a huge shock.

I start treatment #5 tomorrow. It's Taxol and Xeloda (the Xeloda is the part that's a clinical trial for non-metastatic breast cancer). I'd heard from some people that they have awful bone pain after, but my doc says he doesn't see that often. Anybody experience it? He is NOT one to minimize side effects, so I believe him. What he does see is occasionally scary diarrhea and neuropathy of hands and feet, with people occasionally having all their finger/toenails fall off.

Thanks to all for the kind words about my dog! We miss her but are doing OK. They really get to be part of the family. My kids and dh are ready to get another one. I'm more conflicted. I feel like I just don't need to take on another creature to clean up after right now. On the other hand, I find myself looking at petfinder.com and trying to figure out what breed I want the next time. :

to all you wonderful women!
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#65 of 245 Old 05-31-2005, 06:12 PM
 
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I was so glad to see this post! I belong to an online cancer support board, but haven't been able to talk about this with any mamas who have cancer too. I'm sorry to hear that any of you have to deal with the "beast" (as I call cancer) I was diagnosed with Non-Hodgkin's Lymphoma when my son was a year old (almost 2 years ago). I have the "low grade" type, which is much less agressive, but eventually needs treatment and tends to keep coming back and is not considered curable. The average prognosis is 5-10 years, but I've met people who have had it for 15 and are still going strong. My oncs gave me a choice of chemo or what's called "watch and wait". I chose watch and wait and nothing changed for a year, based on scans. But I entered into a clinical trial, because sitting around "doing nothing" drove me nuts, yet I wanted to avoid chemo if I could. I received monoclonal antibody therapy and am currently getting vaccine shot. Pretty non toxic therapy, but I haven't seen much change in the disease, no shrinkage, but no growth, I guess that's good right?
Anyway, I am wrestling with having another baby. I really want to, so does dh, but I am worried it may accelerate my disease. So many fears, that the disease will get agressive during or after the pregnancy, and I'll need chemo then, or worse, a bone marrow biopsy. The thought of not being able to nurse and being away from a new baby (and toddler) so much makes me very worried. My onc says it shouldn't affect the lymphoma one way or another but I have likely had this disease along time before getting pregnant, and I didn't start to feel like utter crap until after my son was born. It took a year after that to find out what was really wrong, every test was normal. I was "lucky" enough to find a swollen lymph node above my collar bone, and voila, the diagnosis was made after a biopsy. Any btdt advice?
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#66 of 245 Old 06-02-2005, 08:57 PM
 
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EFMom, wanted to tell you my experience with Taxol. I had my first round last Wednesday. The pain I experienced was mild but very odd. I'd say 3, max 4 on a scale of 10. Tylenol didn't really help but 800 mgs ibuprofin every 8 hours did seem to take the edge off. Most of the pain was in my hips, knees & shins. It was a little distracting. I didn't have any xeloda. I did experience some pain in the arm I was infused in. A heating pad helped with that. It was very nice not to experience nausea.

OakBerry, oh boy, I hear you on the kid thing. We were all set to try for #2 later this year. Now, it's at least a few years off. I don't really have any good advice for you except to talk to your doctors & follow your heart.

Hi, everyone else!!!
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#67 of 245 Old 06-02-2005, 11:11 PM - Thread Starter
 
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OakBerry...I am sorry you had to find us..but glad to be of some support to you during this time. I understand your concerns about having another. I am going to address the same issue with my oncologist tomorrow. I found my HD 4.5 months after DD was born. Not a happy time. DH and I said no more after DD but you never know I guess..Best wishes on your decision.

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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."
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#68 of 245 Old 06-02-2005, 11:19 PM - Thread Starter
 
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Well, you guys I go tomorrow to hear the results of my CT scan after my last chemo. I just keep visualizing my shinning white diamonds spinning in my body alomst humming with power to keep the *c* away.

I pray that I do not need further treatment and that it is really done for me.

All I want to do now is get my port out asap. That will be the first thing I ask the doc to do for me tomorrow after he tells me I am really done with chemo.

I will also be able to put DD back to breast Saturday if doc says no more chemo for sure.

So all week I have been 1/2 happy and 1/2 reserved for this big day.

Sending you all healing/comforting angels tonight while I drift off to sleep...

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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."
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#69 of 245 Old 06-02-2005, 11:45 PM
 
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Thank you auntieM and Solange for your replies and the welcome!
Solange good luck with the scans, I just had some last Tuesday and I know how nerve wracking they are. The waiting is the hardest part. I hope you get great news tomorrow!
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#70 of 245 Old 06-02-2005, 11:47 PM - Thread Starter
 
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Awww ty OakBerry
and you got that right I hate the wait...

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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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#71 of 245 Old 06-02-2005, 11:53 PM
 
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Me too, I get insomnia the week before. And the contrast does NOT agree with me at all... :
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#72 of 245 Old 06-03-2005, 05:53 PM - Thread Starter
 
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Well, I guess I jinxed myself on the waiting..
I have to wait 2 more weeks.

Oncologist says that my CT scans show a 1 cm nodule in my left armpit and a 1cm nodule in my chest. All of which he said is normal for HD and since my tumors were very large in those areas, that they do not always shrink back down to normal size.
He said he thinks that the scan results are fabulous, that I have done very well with the whole treatment process, and if it were before the time of the PET scan, he would send me on my way and say I am finished.

So since we have the PET available, he wants me to have one to make sure that neither of the lumps have any bad stuff lurking in them. Once we get this test back then we can celebrate.

SO I feel like I have my life stuck on the pause button. I cannot wait until I can finally hit play and move on. I guess 2 more weeks is a short time if I look at the big picture of things. And to be chemo free today when my normal schedule for the past 6 months has been chemo on this day..I am happy for that.

Hope everyone is hanging in there...

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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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#73 of 245 Old 06-03-2005, 09:05 PM
 
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Solange,
Sorry you are on "pause", that stinks. I've heard alot about residual scar tissue at tumor sites after chemo. Sometimes it's hard to tell on CT exactly what type of tissue you are looking at ,but the PET should clarify things. Hang in there!
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#74 of 245 Old 06-03-2005, 10:28 PM - Thread Starter
 
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Thanks OakBerry!

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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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#75 of 245 Old 06-04-2005, 01:38 AM
 
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Traci, big hugs to you. I will be holding good thoughts for great results & a stress-free two weeks.

Take care, All!!!!
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#76 of 245 Old 06-05-2005, 12:53 AM
 
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hi everyone! I'm just about to fall into bed, just wanted to say welcome to Oakberry, and Traci please don't worry too much about your upcoming scan, I have this really strong feeling that everything is going to be perfect.

Have lots to report on, been a bit up and down this past week, but I'm so sleepy I'm going to try and write tomorrow....

goodnight everyone!!!!

love janet
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#77 of 245 Old 06-05-2005, 11:38 AM - Thread Starter
 
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auntieM and delphinus thankyou....

Kepp visualizing healthy bodies everyone....do it everyday....and don't forget to breathe.....

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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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#78 of 245 Old 06-06-2005, 01:54 AM
 
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Hi Everybody! I just wanted to pop my head in and say I GOT TO MEET AUNTIE M, and her dd and mom!She is as beautiful as she is smart and kind! What a treat!
I have been thinking of y'all so much and sending my best. Welcome Oakberry!
Happy Chemo free days, Solange! I long to be there myself!!! You having done it makes it much more believable for me that I will get thru it.-if that makes any sense.
well, it's getting late and i'm bushed. Nighters, mamas!

p.s. sorry about your dog EFmom::cry::
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#79 of 245 Old 06-06-2005, 11:48 AM
 
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WHAT?! Myrrhmaid and AuntieM got to meet?! That's rocking my world guys. I'm crying just thinking about it, I'm so happy for you guys but I'm also very JEALOUS!!!! My ds has just discovered superheroes and keeps telling me that Superman and Batman hang out together. I guess I think of all you mamas as superheroes. So did you guys just happen to run into each other, how is that possible?


MORE DETAILS PLEASE!!!!

love janet
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#80 of 245 Old 06-06-2005, 04:19 PM
 
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well, our very own AuntieM was coming to a town that she had heard I get treatment in so she pm'd me and we met up while she was up! It was AWESOME!
ds said it was like some scene from star trek(wars?) where they are in the bar and everyone is hustling and bustling about.(we met in the busy lobby of a hotel). I guess I kind of felt like a star trek character with my fuzzy head and all. Auntie M has a very beautiful head that she wears well.
(i hope that sounds like a compliment :LOL
We learned that both our dd's are named after their great grandma's and both born on the 8th. I feel honored to meet someone like her, someone that can make a friend feel warm and comfortable and cared for even when you don't 'know' the person! (Like you all! XOXOXOX):
I'm having a good day-which means I'll be knocked down again soon enough (thurs.)
I wish I could wrap my mind to be glad and look forward to my cure-i'm having a tough time with that! I'm anxious about the port being what do you call it-installed?(i have a time putting words together today-chemobrain. so I know they are going to call me like the day or day before they want it down and I'm nervous (what else would they do?)But it all has me on pins and needles and kind of irritable...
getting out and seeing Auntie M was AWESOME though! I wish we could all get together and have a time together! Maybe we could do some sort of postcard exchange, penpal thing together so we can all feel the love and closeness?
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#81 of 245 Old 06-06-2005, 05:11 PM
 
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Oooohhh, I am so jealous of you getting to meet IRL!!! A meeting of the Superheros is exactly right!

Traci, so sorry you are back to waiting!

I had my first round of Taxotere and Xeloda last week. It was a walk in the park. I felt fine afterward. I have to go two weeks in a row for the Taxotere, then I get a week off. The bummer part is that the tumor didn't shrink any from the 4th round of AC, so it's just as well we're movin' on.

My oncologist's office threw a picnic with food, music, games, etc. on Sunday for National Cancer Survivor's week. Dh and I took the kids. When I took my 7yo to the bathroom, she said to me, "Mom, most of these people have the same sickness you do, don't they?" I told her that most had had cancer at some time in the past, but a few were in treatment for it now. She said, "Mom, they look healthy, and lots of them are old. That's really good." Perfect lesson that I was hoping she'd take away!
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#82 of 245 Old 06-07-2005, 09:55 AM - Thread Starter
 
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myrrhmaid don't fret the port thing to much..if you can ..it is more bothersome in everyday life(for me anyway) as the locale on the chest ...it gets bumped by dd and my bra strap and the seat belt..kinda in the way...it is a life saver tho when it comes to all the chemos and other stuff

That is soo cool you two got to meet IRl...how cool.......I am in for any kind of mail exchange you all want to try if someone sets it up...

PET for me on the 16th results on the 20th...

EFmom sounds like you have a very smart dd there...children really are so much smarter than mainstream society thinks and so aware...

gtg dd making a b-line for the bathroom..she is obsessed with the pot for some reason...:LOL

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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."
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#83 of 245 Old 06-07-2005, 03:32 PM
 
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Yup, it was sooooo cool to meet Myrrhmaid IRL. She is just as fabulous as you'd think she is from her posts & has a beautiful family. Have you ever seen a horse frolicking? Her dd played & danced around just like a little horse. Sooooo cute. Myrrh, I can totally see what your son is saying about the scene--just like that Star Wars bar. BTW, her son is a very handsome, well spoken young man who obviously loves his sister very much. What a pleasure to visit with you all! I am blown away by the goody bag you brought--such cool stuff. Your DH is a real sweetie too!

EFMom, what a nice realization for your daughter to come to. I bet it was very reassuring to her.

Traci, I'm glad you've got some firm dates.

It would definitely be fun to do a mail exchange or something.

#6 tomorrow.....

Great big hugs, thoughts of love, comfort & healing to you all!!!!
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#84 of 245 Old 06-09-2005, 01:29 PM
 
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#6 went much more smoothly than #5. I didn't get a clot in my line, so there was much less pain at my infusion line.

I think of & pray for you all so often. I cannot believe how much praying I do now. It has been a great source of comfort me.

DD needs me, so got to go.

Mostly just wanted to say "hi," & bump us up the page.
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#85 of 245 Old 06-09-2005, 05:37 PM - Thread Starter
 
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AuntieM
I was thinking of you today.... sending you good chemo vibes...so I am glad to know it went well for you this time....I KWYM about prayer..the power of prayer really works and I have many prays that have been answered and that I can attest to since my whole journey with HD.


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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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#86 of 245 Old 06-13-2005, 11:45 PM - Thread Starter
 
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....just thought I would pop in and see how everyone is doing..it has been a while since any of us have posted here me being the last post and back already....

Having some major post chemo joint issues and air lung capacity going on...weird...but going to get it all checked out...

I have my PET this Thursday..


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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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#87 of 245 Old 06-14-2005, 04:51 PM
 
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Solange, let us know how everything is going. We'll be thinking of you on Thursday. I haven't had a PET. Is it as noisy as an MRI, or more like a CT?

The last few days have been pretty darn uncomfortable. The Taxol really nailed me this time & my bones have been verrrry achey. I finally am starting to feel better. My nose is totally dripping off my face right now though. It seems to be that same watery eye that is the culprit. No real vision issues, so that's good.

I am starting to feel like the end is in sight.

How is everybody else doing?

Sending hugs, love & healing vibes to you all!
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#88 of 245 Old 06-14-2005, 05:08 PM
 
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Solange, I'll be thinking of you on Thursday and sending good PET vibes your way!

AuntieM, doesn't that runny nose thing just get old! I keep mumbling under my breath, "Oh, my nose is running, what a surprise." My 4yo came up to me with a tissue the other day and said "Surprise, Mommy!" I've got the red/runny eye thing going on, too. I bought some Visine this morning which has helped a bit. I'm sorry the Taxol was hard on you.

I had kind of a hard weekend. I have to go for two Taxotere infusions during every three week cycle. The chemo makes me tired, but it's ten times harder on me because the weather has been unbearable--about 95 degrees and mega humid. For environmental reasons, we don't have air conditioning in our house or my car. (Note to self: When purchasing next car, get AC and to heck with the environment. : ) So, I sat on the couch under the ceiling fan all weekend like a slug!

Yesterday was our 24th anniversary. I had wanted to get dh a gift that was rather heavy. I stopped in the store on the way home, looked at the items and then realized I'd probably pass out if I tried to carry it out to the car in that heat! So dh had to take a rain check, poor guy. This cancer has just crystallized for me how very much I love this man. He has been incredible.
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#89 of 245 Old 06-15-2005, 02:12 AM
 
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Hi Superwymyn! We are all going thru it..s. I wonder if the homeopathic remedy allium. I know it works on colds with clear, profuse draining. Might be worth a try. i'm just rounding a bout of the neupagen/chemo blues! Only to be going to the twightlight cocktail hr. of port installation(tomorrow).
This last chemominfusion was put in very quickly and burned and I was hit with nausea/side affects before I was even out of the chair-aargh..
i did get a nice block of sleep today. i'm 1/2 way thru treatment now. i wonder how i'll do/make it thru the next 1/2. and yes thank goddess for dh!!!!!!!!!!!! i hear that efmom! we just had #10 anniversary and solid!
does anyone not have the 'close to the bone' book. life-threatening illness and the search for meaning, by jean shinoda bolen? PM ME!!
i wish i had the energy to write more but i was just able to show up today. we had dd's 2nd bday on sun. dh installed an old clawfoot tub and i've been loving the relaxation of a bath-at last! went in for blood test today and dh was saying(while i was in the lab)that i'm going to relactate after and being such a support in a full waiting room! i'm so proud!
take care! You are all in my heart, thoughts, prayers and mind. Thanks for sharing your strengths and weaknesses.
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#90 of 245 Old 06-15-2005, 11:07 PM - Thread Starter
 
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AuntieM from what I read the PET is just like the CT but a bigger doughnut hole to go through and it takes longer b/c they inject you with a glucose that takes an hour to travel through your body before they can do the scan.

(aww..I just looked to me right on the screen and see the new fam bed smilies..gotta get one of those..lol..)

EFmom ....I bow to you for being w/o the AC..that has to be tough..


myrrhmaid...IKWYM about close to the bone..everyone needs a copy!!!
How did your port hook up go ??? You are doing a great job and your chemo time is going so fast! How many cycles again do you have to do?

I saw a girl yesterday prob about 12ish with a beautiful bald tan head dressed so pretty and had the biggest smile on her face. I wanted to walk up to her and tear my headscarf off and say you give me the power to do it too....blasted *c*...

My hair is actually starting to come back in..very dark tho...

nervous about tomorrow....will be more so on Moday when I get the results...just trying to keep myself busy until then....

hope you all are doing well...
any more thoughts on snail mail between us for support?

'night

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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