Chemo in Sept 08
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Donna - my song writing days are over...I don't even know what possessed me in the first place! I think you are way more creative than me anyway. I love all your descriptions of what ails us!
I'm up for a tiara on my almost bald head, but wigs are still out with all the hot flashes, and the 90 degree weather we're still having here in So Cal. Can't wait for Fall to finally get here!
Hugs to all!
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Had such a great time at SingChris' place. swoping stories, comparing notes, eating, drinking (water,juice & tea), laughing, checking out Vision Boards (chris can tell u more!), swoping wigs, going without head covers. Eventhough everyone there had breast cancer or was a survivor, it was a very positive gathering and left me feeling happy. Thanks again, Chris. (and i was told that i looked better bald than with hair....hmmm)
one of the advantages of living in teeny tiny singapore is that nowhere is longer than a 40 minute drive away.
my prayers and thoughts are with all of you.
Sam
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Hi Girls,
I have been thinking abou the Chemo Queen song and I really think we should go for more verses, so get your thinking "caps" on and let have some more words.
Thanks Sam, I also had a great time yesterday!
I have decided to write a book! It will not be a novel, but more of a self-help/coaching type thing, "How to get through cancer and still enjoy life"
, with lots of illustrations of all the funny things that can happen, Each chapter will be on things you can do to help yourself or someone going through it. I would like to include the chemo queen song when it is ready if no-one objects.Donna, I love your giant post, I think that you have developed a 6th sense when it comes to changing font, must be all the butt paste you put on your head
. Any ideas of where to put it to boost my white blood count? (I know I am asking for trouble, but go on, tell me!).Joking apart, stay strong and I am thinking of eveyone who is having a hard time and has more treatment coming up.
Singapore Chris
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Wink, I just love reading your posts! Aqua sounds lovely - I have a matching bandana I could wear....
Susan
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Hi Ladies,
Well im off to get my blood work test results, my potassium has been running really low, dont know why. II have a question? does anyone elses feet sting? i feel like ive been walking on a rough road and tore up the bottoms of my feet. I hate that everytime I go see my onc I have new aches and pains to ask about. I have my 3rd tx on monday, not looking forward to it.
My babygirl will be 16 tomorrow, no large party because of my cancer, it sux but she is a trooper. Thanks for all the wonderful posts, it really helps reading that im not the only one going thru it.
Tammy
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Tammy
Ditto on the stinging (and burning) feet! I have never had dry skin, but think that is the cause...putting lotion and socks on before bed but my feet still look like I ran a marathon barefoot on cement.
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Tammy & CJ - I've heard that the feet issues are common and crocs are recommended footwear.
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My son will be 16 tomorrow too!
Anyway, I have an unusual symptom I haven't heard mentioned. I feel like I have a big lump in my throat. Sometimes it almost gags me. And my voice seems a little different as well. It doesn't hurt at all. My oncologist says that like your stomach, your throat has a lining too that can shed due to chemo. When the lining sheds, it can feel like a lump in your throat. Makes sense to me, the slippery coating is gone, so it "sticks" more. Nothing to be done. Just time to heal.
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I don't have the lump feeling anymore when I swallow......but I did!!! I just felt like I needed to BURP and it would feel better......
Now I get strangled really easily when I'm drinking something. Like it goes down the wrong way or something......
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I have the lump feling too! Anyone get a bad cold during all this??? I have a terrible head cold and sore throat. ust want to stay in bed with chicken noodle soup and hot tea....
My oldest will be 22 tomorrow! Lots of birthdays for our kids and yes, they are troopers!
Going back to bed....
D
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Hey girls...
I haven't read any of the recent posts since this morning...sorry about that...
I just got back from another 6 hour round at the ER...turns out that the tip of my port is actually resting ON my heart, causing my heart to beat anywhere from 140 - 160 bpm. I will have surgery at the beginning of next week to shorten the tail. I'm on Cardizem for the time being, and it's a wonderful feeling, not feeling like your heart is gonna explode.
I'm so tired...but I wanted to let you know what was going on...
Have a good weekend...
Robin
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Tammy, Happy Birthday to your baby girl!
Brandonmom, Happy Birthday to your young man!
Have a good weekend everyone, Singapore Chris
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Robin
Wow, I wonder how often that happens? I'm glad that the Cardizem is working, but sorry that you have to go through another surgery
Genia
Your photo is gorgeous! Your wig suits you to a tee (or is it tea?)! I hate having a lump in my throat; I had one right after I was diagnosed - so I think that it was anxiety. Are you drinking through a straw? It might help with the "going down the wrong pipe" syndrome.
SingChris
What a wonderful book it will be! I try to keep my sense of humor because I know that I feel better when I am happy, although sometimes it feels like it takes up way too much energy. Fatigue is truly my enemy - it suppresses my funny bone! OK - you've got some splayin' to do - what is a Vision Board?
Juli
What is the purple on your head? Is it a cap or did you get a purple wig? The old episodes of "Ten Years Younger" had a hairdresser named Jen; she was cute as a bug, but always had her hair dyed neon purple, pink, or orange. I thought that maybe Jen got a hold of you!
Priz
Do you have a fever? You've been exposed to sick people in the hospital(s) and on an airplane (the pressurized cabin can really cause you to have sinus problems) - all compounded by the stress that is literally surrounding you - you deserve some time in bed and all the chicken soup and tea you can hold! And, sometimes you have to ask for help. All I can do is give you a cyber hug GF ((((((((((
))))))))))BrandonMom
I wonder if Slippery Elm would help the sticky throat - you might want to give it a try. You can probably find it at a drug store or health food store in lozenge form.
Three birthday's tomorrow - the end of January must have been really cold - cold enough that you had to snuggle up - and we all know where snuggling leads to
Happy birthday to all; you can catch up next years and have lots to celebrate!I found some socks at the drug store that have a gel lining made up of aloe and vitamin E - after a couple of hours wear my heals and soles are nice and soft. I think that they are made by the good Dr Scholl.
Susan
I love aqua - it's such a beautiful color. It seems to be in fashion this winter - makes me a happy camper. I've already bought a light jacket and shirt in aqua - oh yea, and an absolutely gorgeous uniform! Are you doing OK?
Sam
You certainly are beautiful in your picture - what a marvelous smile you have! Sounds like you had a wonderful time - wish we could all get together and play "pass the wig" and "wig toss".
Hope that everyone has a peaceful weekend.
Love Y'all
Donna
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Gave up and just made the whole post italics
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LOL...Donna I have laughed so much over your fonts!!! I think you have a little Gremlin in your puter.........
QUESTION......who was it that was having port pain and they thought their port was infected months after it had been put in place??? I remember someone saying they thought their port was infected......Robin was it you??? Sorry you are having such a problem with it sweetie........
The reason I asked......mine is giving me FITS. It had totally stopped bothering me. I didn't even know it was there unless I rubbed my hand over it. NOW.....it is hurting again. They poked it 5 times last week trying to get blood......but it was my fault because I didn't want them sticking my hand......which is the only place I have good veins. So since my port was numb.....I told them to keep trying there. Now I'm wondering if I have an infection goin. Of course none of this shows it's ugly head til the weekend.........grrrr.........and I am NOT gonna go see Doogie Howser again if I can keep from it.
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Thanks for the compliment Donna.......forgot in the last post!
hugssssssss
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Donna - That purple thing on my head is just a scarf...made out of dotted swiss material. I got it at headcovers.com and loved it so much, that's all I wear. I also have one in blue, black and gold. I'm thinking about getting a few more colors.
Hope everyone has a good weekend.
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Hugs to all who have had tough weeks. I had TX 3 last Thursday and it seemed much easier than the first 2. I had to go to Philly this week to give a Victim Impact Statement at the trial of the people who stole bodies from funeral homes and sold the parts (potentially infected) to surgeons who put them in people like me. Many of the stolen cadavers were cancer victims and we have wondered if our cancers could have come from the bone implanted. Anyway here's a video after I spoke (no cameras in the courtroom). ABC News called my story one of the most compelling in the courtroom. I am the bald lady mid video in the purple scarf. They show me 3 times. Hope it's okay I posted it here. I'm Sandy on the video.
You might have to cut and past it to your browser.
http://abclocal.go.com/wpvi/story?section=news/local&id=6462975
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Sandy,
WOW, very interesting story...and you look spectacular, very chic scarf too! Thanks for the link.
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I am cracking up at Wink's font gremlins!
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Tammy - no stinging feet here. Hope yours feel better soon. I put aquafor on mine every now and then since my skin is dry. Happy birthday to the 16 yr olds - mine turned 16 in July and has her license now - eek!
Colleen - happy 16th to your son too! Genia, great pic! How's your port today? Priz - happy bday to your kiddo. Lots of Oct. bdays. My dh's bday was Thurs.
Robin - bless your heart (literally!). I'm glad they found out what's going on. Hope all goes well w/ your surgery. Any idea when they'll start chemo back?
Donna - pass the wig! You are so funny. Thanks for asking about me. I ended up in the ER last night. My dr. prescribed me a new med for my headaches and I guess it didn't like me very much. Went to bed w/ a much worse headache and woke up early a.m. having trouble breathing and feeling like I was gonna pass out. Called 911 b/c my dh was at work and had no one to take me to hosp - dd needed to say w/ ds. ANYway, threw up in ambulance, my bp was low, etc. etc. They gave me fluids, moprhine and compazine. I am home and doing much better. Tx 3 is Monday and I am not ready. Really dreading it!
Juli - can you send a link for your scarf? I need something else for my bald head!
Iowa - hope you are feeling good today. Hope everyone else is doing great! Have a great weekend, everyone!
Susan
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Susan - www.headcovers.com - hope you are feeling better! Good luck on Monday. 0
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Hi peeps,
I haven't been able to get back here until today...I've been back but not able to post. This time I felt great for a while. I've been out of energy and feeling just awful with big time metal mouth for the past few days.
Thanks for all the encouraging comments about costs:) I had no idea what Cancer costs were though I've been a nurse for almost 30 years, plus a few years on disability. My treatment on my Medicare Advantage plan might end up costing $10,000-$15,000 with Medicare compensation adjustments along the way. I am desperately searching for a Medigap policy for next year. Prayers going up 24/7. AARP really does have a good policy but so do some others as well.
Love all the comments on all the expense...comparing costs is OK by me. I want the best treatment available but I have to deal with the fact that I may not get the latest drugs. My new doc is wonderful. He has done a lot for me that other Onc offices wouldn't do no matter what the circumstances.
I am a fighter and being a RN does help, though not that much sometimes.
I may have said this before Genia but I am sorry for your bad time. Chemo brain--oops--if I did tell you forgive:) I'm sorry your doc didn't call your Onc. He had a right to know what was happening to you. Hugs to you... Tammy Hugs to you:) I am so weird mentally if I repeat myself...my bad.
Years and years of Rheumatoid Arthritis pain has made me dread pain in the worse way, so I don't mind not having Neublasta pain--TY Donna-- even though that pain originates in the flat bones of the body and shouldn't have the same intensity I'm OK with not having it for now.
I think maybe my WBC's are holding up. The three weeks off gives my count a chance to build up again.This is the week--9th day post AC--that my count will drop. I will go out Monday a few hours for business, then back home. I had the flu shot two Fridays ago and I feel pretty comfy traveling the city trains/buse
Juli, I love the head massage solution. My scalp should start to hurt a bit near the weekend and the rest of my hair will fall out. I am holding on to some hair and have decided to let it fall ad lib.
Juli50, Kytril is fantastic IV and po but I will have to lay in more Prunes next time.:)
Glad to have power port friends along the way. The site started itching and I may be allergic or who knows what. I take Benadryl per my Onc's orders; I sure don't' want to lose it. I had a good port placement, a doc who knew what he was doing. I had no side effects, no bleeding and no punctured lungs, thank God. So I forbid any allergic response. I am allergic to Tegaderm, paper tape, latex etc. The port is non-latex so it had better behave.
Three days before is my new treatment plan...TY Springtime:)
I'm catching up slowly but surely.
Priz glad you son is OK. Take care of you and your family. Thinking of you and all my fellow traveler's.
Not to sound so ghoulish I am glad to read that I'm not alone with my itches.
Springchris, so glad you had a great day out with friends.
Juli50,
After taking my wig, hat or my scarf off when I hot flash, I'm almost glad winter is coming.
{{{{{thepretties}}}}}} Glad they know what's going on with you and will fix it ASAP!
Happy birthday to all the 16 year old darlings.
see ya soon,
mina
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Just got back from the ER. Have cold, but temp went up to 102. Went to get my counts checked. Bloodwork looks good, have killer headache, sore throat, nasal congestion. My dh is sick of going to the hospital with us! Just want to feel better..... DH is making me chicken noodle soup. Just want to sleep and wake up better.
D
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Thanks Mina......I'm feeling a lot better than I was.
D.....I hope you feel better soon sweetie......sorry you are so sick!!! Dang chemo is bad enough without getting a cold on top of it!!!
hugsssss to all
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D, I wish for you a comfy night in a nice warm bed. Enough already:)
Genie, I'm glad you're feeling a lot better.
mina
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Hey all - I got my wbc yesterday - 1.8 - I have to go in on Monday to make sure it is going up and next tx will have at least a partial neulasta shot. This is day 11 - I had very little pain after chemo but now am feeling very achy and tired.
They were worried that I had an infected port, but it was at the top site where it connects to my vein, not where they access it. It never hurt - just had some discharge. I was on antibiotics for a week and that cleared it up. The doc did say they fight ports getting infected.
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oh - one note, I went to Seattle on business on Wed/Thurs - it was the first time I wore my wig for 2 full days. I was getting frustrated by the end of the 2nd day. It came up with one of the people at the meeting that I was in chemo and she said "will you end up losing your hair?" - when I told her I was wearing a wig, she said she'd been admiring my hair all day. I felt like I had a racoon on my head, so it was nice to hear.
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Hi girls,
I am doing good today. Juli, can you give me a link or tell me how to find the dotted swiss? I tried to do a search but didn't have any luck.
Genia, glad you are doing better. Mina, Ruth and priz, hope you are feeling better soon. Feel better wishes to everyone w/ treatments last week or those who are having continued SEs.
Chris (hopefullady) and I are up for tx #3 tomorrow (TC) - who else is up this week? Chris, are you ready? Here's hoping this one goes better! I've heard some say that #3 was better, some say worse, so I don't know what to expect!
Have a great Sunday ladies,
Susan
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i'm up for 3rd FEC this week. I am on the back side of a cold and bronchitis and am still coughing. I hope they still so the TX as a delay combined with the holidays would add another month..
Priz- soak up the rest and soup. On top of everything else the cold isn't what we needed but hey it is cold seaon. Be careful out there ladies...
Have a good week. Happy 16th to all and best of luck to all that are up this week for TXs
I also love the purple scarf..looks really cool!
Robin- I'm thinking of you. Sorry to hear you are having trouble but i know you are glad to know whar it is.
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