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» Hatrack River Forum » Active Forums » Books, Films, Food and Culture » A cancer story - an extremely scary day - pg 7 (Page 5)

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Author Topic: A cancer story - an extremely scary day - pg 7
Belle
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I'm about to leave to get my pump removed. And I'm so relieved! The needle site is itching like crazy and I can't scratch it.

The at-home infusion was a breeze, the pump is small enough to fit into the pocket of my robe. When I'm out I put it in a plain black fanny pack and if anyone ever noticed the IV tubing snaking out the bottom of it and heading up my shirt - they never said anything.

Yesterday was a shorter day of chemo. No side effects other than the sensitivity to cold, but I'm told the other ones take more time to develop. I'll update again when I return from the doctor.

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Anna
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*hugs*
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xnera
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Hi Belle. Just wanted to let you know that I've been following this thread. I'm glad things are going as well as they can. You're in my thoughts. [Group Hug]
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Belle
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It's out! Such a relief to have that airtight bandage off, it was really annoying.

The needle coming out didn't hurt as bad as going in, but it did sting a bit. Now I don't have to go back until the 19th.

My father is going to be here Friday and through the weekend, the Army has him assigned to teach some classes in Atlanta, and he can rent a car and drive over for the weekend. This whole incident really brought us close, his wife said she had to physically restrain him to keep him from jumping on a plane and heading straight to me when the diagnosis came about. She told him he would only be in the way and to wait and see if I needed him later.

He calls after any procedure or appointment to check on me. It's really nice, that we've had the chance to grow closer over the last year or so (in January it will be two years since we made contact again - for those that don't know, two years ago was the first time I spoke with my father in 30 years I didn't even remember him)

It's just one more base of support I have that I didn't before and that's never a bad thing.

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whiskysunrise
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That's great.
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Derrell
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I'm glad it's going well, so far. [Smile] Best wishes for complete remission, and a long, happy life.
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plaid
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Yay! Glad it's going well so far. [Smile] (Belle, I'd have sent you a card, but I've got some kinda of lingering cold right now, and I'm erring on the side of caution and don't want to send you an infected card...)
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Mrs.M
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I'm happy and relieved that things are going as well as they possibly can. I'm especially happy that you'll be able to enjoy the holidays without the yukky side effects.
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Belle
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Haven't been on this weekend much because I've been sleeping, and because my father was visiting.

Well, last week when I started chemo my blood count was fine. I don't think it is anymore. I'm sleeping all the time, very tired and my nose is spontaneously bleeding. Usually I wake up in the morning with it bloody. Sometimes it just bleeds during the day too.

I started taking my iron again, but I'm worried. Could I have that depleted of a blood count after just one treatment? What does that spell for me through the rest of them?

On a good note, the sensitivity to cold has gone away, as it was supposed to, so I can drink cold drinks again. I was sick of room temperature everything. And one can only drink so much hot cocoa. (I don't drink coffee.)

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Theaca
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You should probably ask to have your blood count and platelets checked so they know if you are going lower than they would like. There is always procrit available.

Also, iron won't help most likely. You aren't losing iron, unless your nosebleeds are heavy, and IF you are anemic the problem is the bone marrow temporarily shutting down production secondary to the chemo. Procrit works by making the bone marrow increase production of cells.

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newfoundlogic
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Sorry I didn't see this thread earlier, but I for one know what you're going through except frankly what I went through was worse. Because of the agressive nature of my cancer it had already developed four major tumors by the time they caught it. In addition, a more aggressive chemotherapy regimen was needed involving stronger drugs over a hospitalized 72 hour period, the side effects of which were felt immediately and lasted for almost the entire time period between chemotherapy treatments. You were also fortunate in my opinion to get the surgery out of the way at the beginning so that you were essentially cancer free from the start of your treatment and the rest is basically just to make sure it doesn't come back. Also, your prognosis was very good considering mine (which I was never actually told by the doctors and I didn't find out until very recently) was only 29% for a five year period.

I don't know if you're still having problems with nausea or if the medicines you've been give have been effective, but for what its worth I found Zofran to be the best medicine for chemo related nausea.

I hope you do well and I know how tough it can be because I'm still dealing with a lot issues now, so good luck with everything.

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The Rabbit
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Belle, Congrats on surviving the first round. Get your hematocrit checked and ask your doctor if you need procrit or something similar. If you are anemic due to the chemotherapy, taking iron alone won't fix it. Theca is right.

[ December 12, 2005, 08:19 PM: Message edited by: The Rabbit ]

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Bob_Scopatz
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(((Belle)))

Thanks for letting us know how you are doing through all of the treatments. We're praying for you, and thinking of you often.

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beverly
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Hang in there, Belle. [Smile]
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Rember
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Sending hugs and prayers out for Belle and for newfoundlogic.
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Belle
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(((newfoundlogic)))
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Farmgirl
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Newfoundlogic -- we are SO glad to see you posting again -- we have been worried about you and started a few threads looking for you while you were away.

Not to take away from Belle's thread -- please think of starting (or resurrecting) a thread about your cancer so we can hear updates on how you're doing, as well.

prayers for Belle and for NewFoundLogic (I really wish I knew your given first name - I wonder what God thinks of me praying for someone by screenname) [Smile]

FG

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katdog42
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Belle and NFL,

I am a long time lurker of the board and have followed both of your cancer stories with concern. I just wanted to let both of you know that you have been included in many good thoughts and prayers. I know a great community of spiritual women and have asked also that they hold you in a special way during this time. Know of my continued prayers for you both.

Kat

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newfoundlogic
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FG, actually I posted a new thread a couple of days ago, but it must have fallen to around page 4 or so by now, feel free to bump it in order to avoid detracting from this equally important conversation.
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Belle
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Breathing = good. Not-breathing = bad.

Oxaliplatin,one of my chemo drugs, has a very rare side effect:

quote:
Laryngeal spasm The area around the larynx (voice box) can be affected by oxaliplatin, resulting in a sensation of difficulty in swallowing and severe breathing problems. This can be very frightening but should only be a temporary side effect. This symptom may be triggered by cold and it is advisable to avoid cold drinks etc for a few days after treatment. It is important to let the doctor know if you have this side effect.
http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Individualdrugs/Oxaliplatin#1408

Trust me to be the one to have the rare side effect.

Let me tell you, if the sensation I had when my throat closed is anything like what asthma sufferers go through, I have newfound respect for all people with asthma. God bless you all.

It happened as I was going to my van, so right after I finished my chemo treatment. I decided to be all healthy and take the stairs, even though the stairs are not enclosed in the parking deck and obviously not heated. I didn't think the side effect could possibly take place so quickly after treatment, and didn't expect to have it at all, because, well, it's so rare.

At first I just thought I was really out of shape because I was breathing heavy at the top of the stairwell. Then I realized that no matter how hard I was breathing, no air seemed to be moving. I knew immediately what it was - and that I couldn't panic. Still, I felt my heart rate increase and the adrenaline rush because even if you logically know you need to calm down and breathe slowly you're body is screaming - "No air! No Air! Panic Time!"

I made my way to my mom's office, a few blocks away and they plied me with hot tea and I got it under control. So, now, I can't leave the house without having a scarf over my mouth. No fun.

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dkw
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Yikes! That does sound kind of like asthma, although it's rare that I have that serious an attack -- usually it's just the out-of-breath and wheezing. But when it is that bad, boy is it scary. *hugs*
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ElJay
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[Frown] [Frown] Belle, that is so scary. I'm glad you got it under control, and know how to avoid it in the future. Is this a three day round of chemo again?

*hugs*

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quidscribis
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(((Belle))), that's terrible. [Frown] I'm so sorry you have to go through that. I've only had one attack that bad and it was scary. [Frown]
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Uprooted
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Wow, Belle, that sounds really scary, I can't imagine what it's like to live it.

Wishing you all "breathing=good." Hugs!

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imogen
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Ick!

I hope it doesn't happen again.

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ketchupqueen
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(((hugs))) Oh, dear. Yeah, that sounds like when my asthma gets bad, and it's not fun at all. If you have someone around if it happens again, ask them to breathe with you. Sometimes listening to another person's breathing (or having my husband hold me while breathing deeply and slowly) can help me keep that panicky feeling under control. Which is good, because, as you said, panicking and hyperventilating does not help the situation any. [Frown] I hope they are able to make it go away for you.
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Belle
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kq, I actually called my hubby on the phone, and asked him to talk to me and keep me calm before I drove to my mom's. I needed to get past the worst of it before I was safe driving.

Being the paramedic that he is, though, first he asks "what's wrong?" and I said "I can't breathe!" and he said "Yes you can or you couldn't talk."

Thanks honey. [Roll Eyes]

The only way to avoid it is to not drink anything cold or breathe in cold air. The nurse told me someone actually had an attack in August - they got in their car and turned on their air conditioner full blast and that was enough to trigger it. Some people are more sensitive than others, one guy there has been on oxaliplatin for five months and has never had any kind of breathing problem and doesn't need to cover his mouth even in the coldest weather.

The good news is that it only lasts about three days past the infusion of oxaliplatin, so I should be fine by Saturday. Then I'll be okay until I go back on Jan. 3rd.

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ketchupqueen
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quote:
I said "I can't breathe!" and he said "Yes you can or you couldn't talk."

Oh, dear. I'd giggle if I didn't know how scary it is. It's true, though; I've had my passages seal so badly that I can't talk and my fingernails and lips turn blue. It's a lot worse than your run of the mill "I can't breathe" feeling. But that's no excuse, that's what you're afraid is going to happen when you feel like you can't get air! I'm sorry you have to go through this, and what a time of year to not be able to breathe cold air! But I'm glad it's temporary, and you'll have a reprieve.
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Mrs.M
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Oh, Belle, yuck! At least this is it for 2005.

I have to wear a mask because of Aerin and my face gets cold whenever I take it off. It is easier to breathe warm air.

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Belle
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My resolve is wearing down.

I told myself I would be brave and face chemo no matter what comes I'd get through it. And I still will, but man is it getting harder to remain upbeat about the process.

I'm so sick. I haven't eaten anything since breakfast on Wednesday except small amounts of chicken soup and crackers. My stomach is sore from all the throwing up. Several times I've wakened from a dead sleep in the midst of retching and had to try and run for the bathroom.

Yesterday I ran to the bathroom, my oldest daughter was standing outside the bathroom door when I emerged with a warm wet towel and my anti-nausea medicine. She now pretty much keeps up with the times and dosages and knows when I can have more. That's not fair - I'm supposed to take care of HER. Not the other way around.

The anti-nauseas make me sleepy, so I spend most of the day curled up on the couch. There's so much to do and no time - I haven't baked cookies with the kids, I've done nothing but the barest essentials to get us ready for Christmas and I'm having to rely on my mother and my husband and my kids to do the things I should be doing. And I want to be doing them, but I just can't.

I meant to wash my hair when I got up, then spend some time on the computer while it air-dried and you can see by the time stamp that it's afternoon - I've spent all day working up the energy to come do this. At least my hair is washed and will be clean for tonight's family gathering. I actually thought about not going, missing a family event at Christmas because I didn't want to get everybody down, but my mom said they'd feel even worse if I didn't come and if I can't eat the wonderful holiday dinner my sister-in-law prepared so what. No one's going to force me to eat.

My nose is bleeding again. The nurses said they couldn't do much and wouldn't start me on anything unless the counts didn't recover. Last round they came back up to almost normal, so as long as they keep bouncing back they won't give me anything else. Of course as time goes on, my body won't be able to recover from each chemo treatment so fast so I'll probably wind up on procrit eventually.

According to Sharon, who has more than 15 years experience as an oncology nurse, I'm just one of the "lucky" ones whose body really, really doesn't like chemo. I appear to be getting every side effect and getting it in the worst degree.

I slip my favorite pair of blue jeans off last night without un-zipping them. Of course, I'm not small so losing weight isn't a terrible thing, but losing it this way - essentially through starvation - is not a good thing. A friend of ours from church who went through chemo for testicular cancer ten years ago put his arms around me last Wednesday and told me I had to eat, that was one thing that I had to try and make myself do is keep nourished. But it's so darn hard!

Hate to be a downer, but wanted to let you guys know that I probably wouldn't be around. I think we can count on the days after chemo as being days when I won't be in touch. I do love you all, and I wish everyone a wonderful Christmas, Hanukkah, or whatever holiday you celebrate this time of year. You guys have been a source of strength and inspiration for me, and that is the greatest gift I could have received.

Love,

Belle

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ludosti
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(((Belle))) I'm so sorry that you're going through such unpleasantness. Please don't feel bad about your daughter taking care of you. As a daughter who has cared for her mother through physical problems many times (the first when I was 4), I welcome the opportunity to show my mother some small portion of the care she has shown me through my life. There is so little we can do when those we love are hurting, let your daughter do those small things she can that really help. Please don't feel bad about not doing "the things I should be doing". I know you want to do more than you are able to do, but right now the only thing you "should be doing" is allowing your body to go through the chemo and fighting the cancer as best you can.

I know you probably won't think of this Christmas as "the best Christmas ever!" but I hope that you and your family will be blessed with peace and comfort.

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ketchupqueen
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Belle, do you need the whole dose of the anti-nausea meds? I found when I was pregnant with Emma that a whole pill knocked me out, but half a pill, while it didn't make me entirely better, made me well enough to function, without the fatigue. Side benefit being I could take them more often. I don't know if it would work for you, but I hope something will get your through it. (((hugs)))
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Boon
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Belle,

I, too, have cared for an ailing parent. It's not the same, I know, because my dad didn't have cancer and I was an adult when he got hurt. We did almost lose him, though, from the infection in his bone.

My dad said it was hard, letting me take care of him. He said he basically felt as you do, that it was all backwards; it's incredibly difficult to rely on your children for basic care.

What I felt was that I loved him, and I'd do anything it took to keep him with us and to make things easier for him. It made me feel like *I* was fighting his illness with him, instead of just watching him struggle. *I* had a part in making him well. And if we had lost him, at least I'd have known I did everything I could to try.

What I'm trying to say is that you *are* taking care of her by letting her take care of you.

I pray every day for you and your family.

Love, Rayann

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Wendybird
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((((((Belle))))))))) My thoughts and prayers are with you. Its okay to not be upbeat. Honestly chemo just sucks and its okay for you to let ppl know that. Your kids of course might not be able to see as much and may need you to be upbeat at times but don't try to be upbeat all the time. The reality is that cancer and chemo suck and its okay to admit it. If you can't eat maybe you can drink ensure or carnation instant breakfast or something with some nutrition in it. Its really hard. But you're a fighter and you're going to make it.
All my prayers and love,

Wendy

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jexx
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Belle,

Thinking of you and your family today. Sending positive thoughts and gentle, warm hugs.

Your daughter is good to care for you, and you are good to let her. It's better to do something than nothing, you know? A horribly helpless feeling to just sit and watch your parent be ill. Even if she could only hold your hair back for you, it would make her feel better (take this from one who knows).

Yes. Do try to eat (or drink Ensure or something similar).

(((Belle)))

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imogen
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(((Belle)))

From what I've read of them here, your kids are amazing. I am sure that they are more than happy to take care of you for a little while.

I wish I could say something that would make you better, but there's really nothing.

You have all my best wishes and good thoughts.

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sarcasticmuppet
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Belle, your last post almost made me cry. I'm so sorry, angry, sad, etc. that you or anyone else have to go through such an ordeal. But it'll be worth it, you'll see. Prayers and good thoughts your way, as usual. [Frown]
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Belle
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Not a great day today at chemo. I saw the doctor and she said my platelet count was marginal. If it's under 100,000 they won't treat me, and it was 101,000. But it's fallen a good bit. My first chemo treatment the count was 202,000. The second one it was 186,000, and now it's fallen to 101,000. If it falls again like that I won't be treated next cycle, they'll give me an extra week to let the counts recover. If that continues it means stretching chemo out over a much longer period and that thought made me cry.

Also, my port was acting up. You're supposed to be able to draw blood through it. But the nurse couldn't get any blood out of it so she had to draw it from my arm. When it came time to infuse my oxaliplatin and leucovorin, the oxaliplatin is in a pump but the leucovorin has to go in through a gravity drip and it wasn't going through the port. The only way we could get it to work is if I laid curled on my right side, and breathed in deeply and held my breath. With my ribcage expanded, it would work and the drip would start but as soon as I exhaled it stopped. So I spent 2.5 hours on my side doing this breathing and holding routine until the drip was done.

Now my chest muscles are sore and my hip hurts from me lying on it in one position for so long. Wah. I'm such a whiny baby lately, I swear.

At any rate, I'm depressed, mostly about the counts. One thing that is on my horizon is the trip to Washington DC with my family and my Dad and stepmom. It's in early July and if only two treatments get delayed by a week it means I won't be done when I go. I really wanted to celebrate my end of chemo with that trip and to think I will have to go on vacation, probably sick and weak, and then come back and still have chemo treatments scheduled really upsets me.

I don't suppose anyone knows any natural remedies that will help build up a platelet count, do you? The nurses told me there wasn't really much I could do, that usually only time is what's necessary.

At least the falling platelet counts help explain the nosebleeds. I was telling one of the nurses about the frequent nosebleeds and told her that Christmas Eve I was wrapping packages and a drop of blood plopped down on the package. Of course, I immediately looked up to the ceiling because as every reader of thrillers knows, when a drop of blood plops down on something there's a dead body on the floor above you. However, there was no body, just my nose. So my Mom and I wrapped packages that night, me with tissue stuffed in my nose to keep the blood from ruining the packages.

The nurse told me that I was hilarious and that they loved seeing my name on the appointment sheet because I was so funny. Well, I'm glad my chemo is good for something, at least I entertain the nurses.

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Wendybird
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((((Belle))))) I don't have any suggestions. This is so frustrating. I pray your counts will stay up enough to keep on the schedule so you can take that trip with your family.

Love and prayers -

Amber

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Uprooted
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Oh Belle, I am a whiny baby, you are going through hell and entitled to complain about it.

So sorry. Hang in there--I've seen friends really rallly after having to take a break to recover from low platelet counts. Wishing you all good things.

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JennaDean
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Thanks for the update, Belle. [Group Hug] I don't post a lot but I've been following your story. Honestly, it isn't a funny one, but the "dead body on the floor above you" made me smile.

I understand why you felt you should be taking care of your kids, not them taking care of you. But think of it this way: your illness is helping your daughter learn how to serve. Teaching that is an important part of your job. And when you serve someone, your love for them increases. You know how you bonded with your daughter when she was a baby and you did EVERYTHING for her - now she's serving you, and it will increase your love for each other even more. It's all a good thing. [Smile]

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ElJay
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Oh Belle. . . It breaks my heart just reading what you're going through, I can't imagine how difficult it must be for you. I'm so proud of you for handling it so well. I'm sure you don't feel like you are, but from here you look just amazing. **hugs**
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Belle
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Hey, newfoundlogic, if you're reading this I asked the doctor if I could take anything for nausea that didn't make me sleepy and she prescribed Zofran. I remember you recommending it, so I'm hoping it works well for me.

Is anybody interested in seeing the port? My mom wanted to take some pictures of me when I'm wearing my pump. The picture will be nicely cropped so you don't see any parts of my anatomy you don't want to - remember it's in my chest - and it's probably only disturbing to those that are squeamish about needles. But it's kinda cool too, so for the curious I offer you the chance to see what it's like if you wish.

Oh I forgot a good thing - I'm losing weight, even through the holidays and I'm losing it steadily and slowly which is encouraging. I'm going to need new blue jeans soon, that's kind of exciting!

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Dagonee
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quote:
Wah. I'm such a whiny baby lately, I swear.
((Belle))

Complain all you need to - you're certainly entitled.

I'm praying for you and your family, Belle.

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Elizabeth
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Oh, Belle, sweetie, you are so NOT a whiny baby!

"I understand why you felt you should be taking care of your kids, not them taking care of you."

Belle, this is a really tough one. You want your kids to be able to be normal, and for things not to be disrupted for them. But things are not normal, and their life will be disrupted.

It seems that this is what your daughter wants and needs to do for you. Make sure her life is as normal as possible otherwise, and it can only be a good thing.

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The Pixiest
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Belle, I'm sorry I've been so quiet but I want to let you know you've been in my thoughts and hopes (and would be in my prayers if I were the type to pray.)

If you need someone to talk to who's been through this I can give you the email or phone number of one of my best friends. When I first met him one of the first things he said to me was "I have terminal cancer and I have a year to live." That was 8 years ago and he's been cancer free for the last 6 years. If you want to talk to him, email me at p i x i e s t (a t) y a h o o (d o t) c o m and I will forward you his information.

Pix

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Derrell
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(((Belle)))
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Brinestone
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I never know what to say, but my thoughts are with you today, Belle.
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romanylass
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Belle, I'm sorry about the platelets. I hope it loks up soon.
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beverly
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Belle, I haven't been around Hatrack much--I have been so unaware of what you have been going through, both now and earlier in December. I'm sorry so many things have been going wrong! I pray that things will go better for you, and that you will find the encouragement and strength that you need to make it through the hardest times. You seem so very strong to me!
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