August 2010...anyone starting chemo besides me?!
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lizzy - Sometimes I think the stiches don't absorb very well.0
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Wherria!!!! Great to hear from you! No worries you're not dumping anything on us! We want to hear how its going both the good and the bad, thats how support works. Re:weight gain- that has to be one of the hardest things to go through when you already have had past issues with that and for the drs to say "Gain weight" i dont think i have read 1 person say "i gained weight and i loved it" so those feelings are totally normal.
I am sorry to hear that your lymph is getting worse. Its like how much can be dumpped on us! Keep doing whats reccommended and hopefully it will start to imporve.
Re:liver mets- i will keep you in my prayers and please update us ASAP! FYI chemo may cause liver damage and cause those enzimes to go up- my dr just went over the results of some blood work that showed that and he is linking the two. There was another number on there (sorry i wished i paid more attention) but the other number was in the normal range and he said that more than likely just indicates damage from chemo... I am praying for you!
Kel- Kales out? Why (something i should know about?)
Lizzy- Ouch on the cut finger needing stiches!- i am glad you look at the bright side for it not being infected. I just saw on tv this week but i cant recall where (porbably access hollywood LOL) a woman actually chopped her whole hand and part of her lower arm of with a saw, i think a table saw or something, they reattached it, showed the xrays and you could see her wedding ring. So that DOES happen when using power tools- be safe woman!
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Tex - I think Cal meant kale in the garden is done perhaps!0
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Oh and i am not usre if i posted here about my numbness in my left arm, but friday i called again for the freakin results of my c/t and the nurse @ my oncos said the hospital LOST the scans- as you all know CT scans have to be given a certian amount of time apart because of their danger to us, so its not like i can just get them re-done. So i went to the hospital and raised some hell and i did what my nurse couldnt do it 2 weeks- they called me later that afternoon saying that they had requested another copy and got them in! Squeaky wheel gets the grease, but it still irritated the heck out of me that they lost the dang things in the first place and TOOK THEIR MERRY TIME GETTING THEM AGAIN, anyhow fingers crossed that i hear back monday
Just wanted to tell y'all that i truly love you guys! thanks for being there!
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Lizzie....holy sh**, you are really having some bad luck...sorry to hear about your tooth! Not sure that I mentioned but I went to Dentist..they were to replace a silver filling with a white one (total cosmetic choice) and my tooth "fell apart". They thought I would need root canal but my dentist did a fix in the meantime and I go back tomorrow to see. Fingers crossed for no root canal. Anyway, whole reason for this story is that my dentist said that chemo can do real damage to your teeth due to dry mouth etc.
Texas...keep us posted on your news. More proof that we need to be our own advocates for our health!0 -
rachel! that totally happened to my husband- the ARMY did some fillings on one of his teeth and apparently it was a shotty job cuz a few mo after he got out he went to a civillian dentist for some pain and his tooth apparently was rotted through!
Good luck tomorrow keep us posted
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Texas: the problem with action Jackson is I *think* I can do everything but, on a long list of reasons why I should have not been doing that, I too have numbness issues in both hands.
I am sorry to read about your numbness in your arm. Do you think there is a chance the way you are using your arms while doing homework etc... might be causing this? BTW, how is school going? Also, as I type that out all I can think is I am sure the way you are sitting while studying has nothing to do with the numbness and it is probably leftover chemoramadrama!!!!!!!
I think I speak for us all when I say we truly love you also, Tex! I am glad you made some noise at that hospital! Please don't tell me you had to drive to that hospital 3 hours away to raise a ruckus, did you? I would be wicked pissed if that was the case.
I hope your news is good tomorrow. Please keep us posted.
Rachel: I hope you avoid a root canal. My dentist was able to narrowly help me avoid one just before chemo started. I am taking a bunch of calcium also. This tooth thing bothers me. This afternoon, however, I got out my dental tools (I told you I was a dental flake!) and took a picture of where that tooth was. There was a filling of some silver sort in the middle and it later dawned on me, when I was working in World Trade I met a friend for lunch in the concourse (the large mall that was at the base of the WTC plaza). I was in great shape in NYC and mainly because I was always working out, did not eat a lot and drank a plenty!!!! In any case, I remember having salad that day and I remarked how hard the almonds were or something! It was not almonds at all but was a part of my tooth so perhaps all this chemo just worked that over b/c it looks like it fell out around this silver thing.
In any case, I hope that all this stuff that is going on with me can be separately explained and has nothing to do with the big "C!" As for you, having gone through cancer twice, getting the silver out of your mouth perhaps for you was cosmetic but dental minds would argue they should come out anyway as there have been connections to those with alzheimers and cancer, I do believe. Get the silver out!!!! Better safe than sorry.
Good luck to you tomorrow as well! Geesh...you and Tex have a big day tomorrow! I will be trying to get an appt to find out what the hell is going on with my chops tomorrow! I am so upset about that tooth but I am thinking the damage to that tooth was over a decade ago and I did not have a great dentist back then so it is probably just bad work that has to be fixed and I need to calm down and stop thinking everything is mets-related!!!!
Texas: I think the only field with widespread incompetence outside the financial industry is dental. I am so not surprised that happened to your husband. He is lucky, in fact, that he found a decent civilian dentist. I love my dentist and although he is over an hour away, it is well worth the ride. That happens frequently, per my dentist, that crappy dentists don't clean cavity chambers out sufficiently and just fill it and rot will form right around it. Very bad business.
Well, the Emmy's are on! One byproduct of this entire bc experience is that I have become a bit of a tube head!!!!
OH..the other development tomorrow...I get my surgery date AND I go to the GP to find out about all these weirdo things going on with me.
I cannot believe that happened to my tooth. If any of you are SNL fans, perhaps I can get a cameo on "Appalachian ER" with my back tooth in a shambles!!!!! To qualify, of course, I will need to open my head like a Pez dispenser so they can see the damage!!!!
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Lizzy- i would love to think that its homework related (i am a lefty and its my left hand) but i started noticing it while on vacation before school started
My best educated guess is i still used to co-sleep (up until friday, when i booted the both of the kids out!) and my son would sleep on my arm, i think maybe it just pulled out of place and everything. We need to wait on the scans and if that shows nothing then MRI- i honestly dont feel its cancer related, but i need to get it fixed cuz it bothers me at odd times, like when i am driving...
No no no it was the hospital in town- funny story thats where i get my echos too and i am having a surgery done to correct a bladder issue caused by my pregnancies (aka problems holding it lol) but they need a recent heart check- i told my dr (gyno) no problem, i just literally had one done the week before i saw him, he said where did you get it done at, i said at the hospital here in town and he told me that he doenst like them and wants me to go to the cardiologist herer in town for a better look into my heart LOL, well i totally agree cuz the day i had my ehco i showed up on time and they couldnt find my orders, and were giving me the run around for nearly 2 hrs and then finally they got that worked out and then they told me- well the ultrtasound teach that does the echos went home for the day- mind you it was only 3pm! SO yeah totally a wasted day at the hospital.
I have the cariologist appointment on tue
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WOW! I can't help but think when I read this what a mess we all are - teeth, arms, fingers--good grief. I'll add my woes in - here we go:
Went to the church picnic - felt kinda funky before I went but I went anyhow. I was fine there - I got a big game of soccer going with the teens and younger kids - I had a blast running and playing with them all! I actually did not eat there so I know what came after wasn't from the picnic:
Came home and was about to start dinner when I got knocked down by a high fever and my skin felt on fire. Ran to the bathroom - diarrhea -- and then the dreaeded pukes! Dh dropped my daughter back at church for youth group and while he was out I threw up four times - I thought I was going to die - shaking, hot, dizzy, etc. He got home and went back out after a while for pedialyte because I could tell I was fast dehydrating - kept puking and the other stuff.....
I actually got out some compazine supposotires from chemo- but it didn't stay there for long!
When he got home I was in the shower shaking -= I thought we'd have to go to the hospital becaue I was going to pass out.............
I went back to bed and just sipped the pedialyte. I was so achy - ow ow ow!! The pain was unbearable. Now my tummy's settled down and I think I'm okay. I still ache and i have a headache but the stomach part is stable.
WOWEE! HOW fast did that come on! I thougth I felt weird this morning but holy cow-glad it didn't happen at the picnic!
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Cal - food poisoning?0
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Calamtykel: I wonder what happened? If that a flu-like situation then, yes, that came on very, very quick. I was stunned to read that. I wonder if our bodies will now, after chemo, take on flus/viruses and the like and we will get twice as sick, twice as fast as we ever did before. That is one scary story you told tonight. I sure hope you are feeling much, much better very soon. Please post again soon and let us know how you are. Kel, what could have happened? That is scary to even old broken chops over here!
We are a rag tag group! The wheels are coming off the cart pretty fast! What is going on with all of us?! Our thread is becoming like a virtual triage!
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nope, not food poisoning as I didn't eat at the picnic...this has been sorta coming on for a few days. DH has had the runs but nothing like the fever and other stuff. I guess it just hit me hard. I'm disappointed - I wanted my immune system to be on the mend. I think having lyme again just took it all down.
I'm not throwing up anymore but the fever and intense aches come back unless I'm on tylenol (nothing like something more to stress the liver..) But I literally can't lie still without it. Im going through unflavored pedialyte like crazy. I'm out of it now -and I still feel so dehydrated from running to the bathroom. DH is hopefully going to the nutritionist for me today and picking up some other electrolyte stuff. He had to stay home from work- I literally can't function.
I agree -it seems like we're all coming unglued at the joints! =:O I would have expected this immediately after chemo - was really hoping my white cells were able to do their job again - guess not!
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Cal - I hope you feel better soon!!!0
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Cal- have you had any cantelope lately? i know cantolope from colorado were recalled due to something causing listeriosis
"The ailment causes gastrointestinal symptoms and fever and muscle aches -- and in severe cases can lead to headache, stiff neck, confusion and convulsion."
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Lizzy - did you get a surgery date? What about your tooth? What did you GP have to say?
Tex - did you get your results?
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OH wow - nope, have only had local cantelope lately, but that's scary - how can a contained fruit like that be diseased? Our food is so messed with.
I'm doing a little better. DH did the shopping this morning and I'm just taking it easy. Made a huge mistake and had a cup of coffee - UGH! Not a good decision. I don't know what possessed me -= a moment of optimism.
The "other end" can be bad as far as dehydration, but frankly I'd rather have that than the pukes and nausea. I must admit I took comfort in the fact that I had all those anti-nauseas in the house from chemo!
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Good day, warriors-
Hope everyone is well today. You all will not be surprised to find out when I contacted the onc's office about all this weird "s" with me lately, they quickly explained it has been too many months since chemo for this to have any relation to chemo and all of these issues are also squarely unrelated to Tamox so, thank you, come again!!!!!!! The cancer-medical-industrial-complex needs another layer of doctors who do "clean-up" after a patient has been on chemo. I think a few of you have pointed out the lack of post-chemo docs...it is a strange, wide-open space where there is nothing available to us. Someday perhaps..!
Omaz: I do finally have a surgery day for the last week of October. No definitive date because of coordinating with the OR but they say it is going to be then so that is all I have! As for the tooth, I took pics and emailed them to my dentist who is over an hour away. I want him to tell me what the game plan is and to look at my insurance etc... We shall see. I am on my way to the GP now.
Rachel: how are your chops today?! Let me know if you are magically escaping a root canal!
Texas: what is going on with you? Did they look at your scans? How is school, btw? I no I keep asking because I have limited memory skills these days...completely unrelated to chemo, of course!!!!!
Here is a little something to make you all laugh: I have been entertaining myself this morning by singing "my nose hurts more today than yesterday but not as much as tomorrow!!" to the tune of that old song "I love you more today than yesterday!" I am a mess!!!!!
I will post more information on my dastardly state of health later!!
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Hi Wherria, good to hear from you.
Lizzy I must have missed something, I didn't know you were having so many problems. Prayer said for you!
Rachel: I go tomorrow afternoon for a crown. I think I read somewhere that chemo can screw up your teeth.
Texas: Glad I was of some help with the hair!
All, say a prayer for me as I go to the onc tomorrow for my first post treatment (for ov ca) visit. I had ct scans last week and I see him tomorrow to discuss what's what.
My new avatar is the newest member of our family. Pistol Pete "Petey" four pounds of toy fox terrier terror! Nah, he's really sweet. Him and the other dogs are doing pretty good getting acquainted.
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I escaped the root canal....filling replaced and dentist is optimistic that my tooth will stay put. Granted, my mouth feels sore tonight. My son had his braces tightened this AM so he is miserable tonight!
I'm off to spinning tonight. Getting a little better...either that or my butt is numb now!
Cal...hope you feel better soon.0 -
Well, off to get a bunch of bloodwork tomorrow. Pre-cancer/chemo, there were answers. Now there does not seem to be any answers anymore. The bottom line is no one really knows. Also, everyone says they are fine but I don't really think anyone is fine. LIke my doc said today, for most people, being (presumably) cancer-free after chemo is enough for them. They will take all the other stuff in stride. I don't feel well these days and I don't know what is going on.
Lady: I don't talk much about how I am feeling but lately there has been a culmination of all sorts of weird stuff that is starting to scare me. So, to answer your question, I have not been experiencing everything all at once or quite as sharply as I am recently.
Rachel: enjoy spinning!!! Good for you. That is one sweat-eee class!!!!!!! I miss it.
Well, time to go put some junk on this rash that has suddenly cropped up on both arms. For the record, I don't talk much about my maladies and this is most likely the end of what you will hear from me for a while about this stuff. I need to be strong for my warriors and not show "chinks" in my armor!!!!!
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Lizzy - Good that you are getting blood work. I am wondering about thyroid or maybe some unusual allergy or something? Did anything change in your home? I know some folks have a sensitivity to formaldehyde in building products and that can cause problems. Did you get a new pet? In my humble opinion we are all warriors together, there for each other in thick and thin.
Lady - I hope you get great results. Your new dog is adorable!!
Cal - I hope you are on the mend too.
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I know how ya feel lizzy cuz i hate ppl to see me when i'm down!
Awesome you finally got a date! I know everything will be alright for all of us!
Nope no scan results, i am gonna call tomorrow between my classes if i dont hear from them. i was just so busy!
Rachel whoop whoop on the saving the tooth!
Cal= have you ever experinced these symptoms before in relation to your lyme? i am rackin my brain about what it could be-
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Lizzy- this the place where you can feel safest to have that chink in your armor. A big hug to you Warrior Chick Extraordonaire!
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Hi Sabe's! Went to my GP today, because my onc wasn't very responsive when I told him about the liver enzymes being elevated, and the symptoms. Well, actually, he didn't say anything, because he didn't call me back. His nurse did. GP also did not order a complete liver panel, just a CMP, chest x-ray (??), head CT (??). I don't get it. I have elevated liver enzymes AND symptoms that match liver disease/cancer. Why am I having such a hard time getting someone to order a liver panel????
Lizzy: I'm a little frustrated with you, to be honest. You are a warrior too, and we want to be supportive to you too, just as much as you want to be supportive to us. I know I don't want to have a superficial relationship with you just because you are the one who started this group, and it would feel superficial if I knew that you were listening to me (us), but not telling me (us) about you. If there are other reasons that you don't want to share your maladies, then that's a different story, and we will respect that, but what is the point of this group if we aren't ALL honest with each other? That is, in fact, the commitment we have all made to each other. Personally, I hate the thought, for example, that you might be writing strong, happy, supportive posts when, really, you aren't feeling strong or happy, or when you happen to be going through your own hell. So please, give this some thought, and give us the truth. We love you, and you can't change that!!!
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Lady: how the heck did I miss that incredibly adorable dog?!?! OMG...I almost want to come for a visit so I can see that cute little dog!!!! I love it!!!!!!! A few years ago an older woman in my neighborhood went into a nursing home. She lived alone and as the story unfolds, apparently she had outlived 2 husbands. In any case, the nursing home has burned through every red cent she had and now forced the sale of her home to eat up every dime she has. In any case, apparently she left her entire estate, or a large portion of it, to the ASPCA! My neighbors were concerned we would have a shelter filled with barking dogs over here! Mind you, my neighbors are animal lovers but a shelter would have driven us to start barking! All I could think, though, is there goes a woman after my own heart!!!!!
Omaz: no changes in my house or life. The only thing I did was stop those horse pill sized Centrum mutlis and went to a gummy vitamin (for adults). I don't know what is going on but I do hope this bloodwork shows something.
Texas: Yeah, I really don't like to talk about when I am not well but, to be honest, when I saw Whitney post, and because I have been getting fed up with this bunch of symptoms that are becoming the equivalent of a physiological flash mob, I had to talk. In this past month, and moreso in these past 2 weeks, my body is sending me a lot of messages. The anal bleeding, blood coming out of my nose, my nose hurts even to touch it, I am constantly having cotton mouth even though all I drink is water, I am getting charlie horses every night just about and last night I had 3, pains in the top of my head that wake me up, a rash on both arms that makes me want to take a knife and cut skin off and my lips have been chapped, sorely chapped for months and months. Add to that a peculiar cough and tired eyes, I can't help but wonder what the heck is going on with my body. I never had allergies in my life either.
I guess when I read Whitney's post I felt comfortable discussing my own troubled plight. I would not even mind but after going through all this crap, I would like to get back to a normal state but I think what I have to do is give up what I knew "normal" to be and become more accepting of this "perpetually sick" new norm.
What confuses me is how there are no in-between docs from the onc, who I have found to be completely dismissive right after chemo ended, to the GP who does their best but it just seems very odd that there is not a "clean-up" doctor after chemo who can help us sort it out and perhaps help someone like me get these warning signals into a trending box. To be honest, I am scared "s" less that these are warnings and no one is listening. Sorry to unload, Tex...I know you know all too well what it is like to going round robbin in the medical industrial complex! BTW, get on them tomorrow about those scans. I tell you, I was their freakin' BILL PRINTING machine would break down as much as their follow-ups do. I am glad you focused on school today. Keep me posted as to what happens.
My oldest nephew (31) and I used to play "Zelda" on Nintendo. Part of the game involves Zelda using a sword to cut down all this grass to find keys, tokens etc.. (can't remember exactly...has been like 20 years!) to move to the next level. I kind of feel like Zelda in this post-bc/chemo "Mad Max: Beyond Thunderdome" I am in with this troubled container I call a body and lack of answers. I feel like I have to keep cutting down all this brush to get to some answers. I feel so dehydrated, and I drink 100+ ozs of water daily and the only other thing I drink is 2 cups of coffee (cream only), I wish I had an IV next to my bed!
On a much lighter note, the tv continues to take my mind off of all of this stuff and "Dancing with the (NON!) Stars" started tonight and Nancy Grace and Chaz Bono were 2 dancers gathering a lot of attention in the weeks leading up to the season premiere. They both did pretty well and Chaz Bono was really, really good! It is enjoyable, fluff television for me!
Sweet dreams to everyone!
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Whitney: I don't want to frustrate you!!!!! Actually things have been ok but over this past month, there have been a number of issues as I outlined in my previous post. To be honest, I am just getting tired of all of this CRAP!!!!! Good to have you back...you help me open up!0
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I hope getting some of that off your chest helped- my dr always says a problem shared is a problem halved.
I would be nervous too with all those symptoms! I often feel like i am being bounced between my drs, i am just making my own path now! eff what they say i should do or not do. i am opting for this elective bladder surgery cuz of some leakage and i did the stress test today and it turns out that one of the mitagating factors is that my bladder doesnt want to expand so it cant hold much only 152 mls and my dr said that average woman should be 300-350, his thoughts is one of my meds caused the tightening of my bladder.... tbh i havent even mentioned it to my oncologist yet, but will.... no one wants to have to wear pads when they exercize- yeah it got that bad and i am only 28! feel like 82!
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Lizzy - just a thought, could it be the tamoxifen?? I ask because on another thread about tam several women mentioned the charlie horses at night.
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Omaz: I think you should become a doctor! Kel is our scientist and you are now the doctor of this group! I looked up the tamox SEs and sure enough, an itchy rash is one of the more common ones! There were some things listed that spoke of dry skin etc...although the onc's office summarily dismissed my symptoms as having ZERO to do with tamox or chemo! You really have to be your own advocate out here. That was some priceless advice one of my ex's gave to me right at the beginning of this bc battle. Now I totally understand what he meant.
As for tamox, I am not even supposed to be on it anymore anyway because I have not had my cycle in over a year. This means I am definitely in menopause and should be on an AI.
Thanks for knocking on my head about the tamox SEs!
Has anyone heard prevailing wisdom on nodes is to not remove them at all? Apparently that is something new. My vet, of all people, told me about that when my cat was getting her annual check-up.
Tex: good luck getting some answers tomorrow. I cannot believe one of your meds "tightened" your bladder. Do they have any idea which one? At least you are getting bounced...I feel like post-chemo I have NO cancer doctors anymore! Chemo is not a magic wand miracle, people, we need some cancer GPs!!!!
Tex, definitely go your own way...I am starting to realize we are left with many questions and no answers because THEY DON'T have the answers!!!!
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Omaz: I must say thank you again! I just googled "tamoxifen charley horse" and google had a suggestion for me, in those exact terms, by the time I had typed the "h" in charley! It is a well-know side-effect of tamox. Gadzooks!!!!0
