Starting Chemo in JAN 2007

Amera, I feel the same way as you do about the term "remission."  To me, that says that the cancer is still there, but has been knocked back with treatment to the point that it isn't active, and that it's just a matter of time before it comes back.  I don't know if that is the correct interpretation, but that's what it says to me and I wouldn't want that term applied to me.  I much prefer "cured," until I know differently.  I can't say that I have actually internalized the idea of being cured, but I am working on that.  I intend to be cured, and I think this is the time to start thinking of myself that way, since treatment is over.  Cured is a permanent thing, remission is only temporary, right?  So who would choose that?  I'm sure your co-worker meant well, but just didn't know the correct terminology to use....but no wonder that it made you feel uncomfortable!  I totally understand. 

Sharon, it's always so good to hear from you.  Sorry you didn't have as big a turnout as you expected for the Terry Fox event, but anything is better than nothing.  Please scan the article and share it with us, if it is published.

Lynn, so glad your MRI results were good!  If it were me, I'd start with my internist to figure out the source of my pain, rather than starting off with a specialist.  If you don't need or want surgery, and I am sure you don't, you might as well keep it simple.  Do you take Celebrex or anything like that?  Maybe that would help.  I know I can't get out of bed without mine.  Hope it goes ok having your mother living with you - I know she'll be a help after your surgery, but maybe she won't need to be with you all that long.  No matter how close you are, it can be difficult living under the same roof. 

Good luck.

Tina, how is Paul doing today?  And what does the ENT say about his continued problems?  I hope things will get better somehow.

Well, I'll check in later - am off to see the nutritionist.

And Tina - yikes - Paul is still having nosebleeds after the surgery - poor kid.  Hope he's better today.  And how was Jaclyn's big sleepover party?

Hey Caya,

Jaclyn's party was great, thx.  She did see the two girls whose mom I am feuding with but they played nicely together.  Those girls didn't stay the night, thankfully.  They did games, crafts, had pizza and in the am, a big breakfast buffet in the dining room.  She loooooooved it.  She cracks me up, for six years old...to go off to a big community sleepover sans parents and she is not at all scared.

Well how's this for creepy...? In today's mail I get a reminder that it's time for my mammogram, funny they never sent them before???

I had to go to AT&T this morning and buy a new modem. For some reason ours fried yesterday?? Cost me 100.00 but I had to spend it because my daughter has online classes..

Rebecca, good news on your a.c repair.

I had a meltdown yesterday and called my oncologist. Since going on the tamox. I have not had more than 3 hours sleep per night. I wake up roasting or wake up soaked and freezing, not to mention the 5 gazillion trips to the bathroom! I can't take it anymore, I am so tired I cannot function. Of course they tell me to take the anti depressants and I am suffering so bad weaning off the Lexapro I do not want anymore of that crap in me!! I am getting these brain zaps that everytime I move I feel like my heart stops and my brain "reboots". It is very hard to explain, and seems Dr's don't want to admit to that side effect, they say they " never heard of it"!! Well, google Brain zaps and HELLO welcome to a whole new world. I definately am not the only one enduring this horrible sensation. So I am at a cross roads. I can take Effexor and hopefully reduce the hot flashes ( which are too many in a day to count) and endure the withdrawal someday which I believe has to be on the same level as heroin withdrawal or throw away the tamoxifen and hope for the best. I'm am so sorry everyone. I know I am a huge downer, but I am beside myself with what this "blankety blank blank" disease has done to me. I want to scream and put my fist through the wall. I can't do anything without sweating profusely and feeling faint all the time. If I am not roasting I am shivering, never am I just normal! I changed taking the tamox at night to the AM per the Dr. but I just can't take those *^%# anti depressants. I am beginning to think that Dr's are prescribing those just to say.. "here now go away and leave me alone." Again Ladies I am sorry, I have screamed at my poor DH, cried to my brother in law. Sobbed at my DD. I am a real piece of work.

Nancy - I am so sorry to hear that you are having such a rough time. I know first hand that sleep deprivation can really wreak havoc with everything in your life. It effects your mood, memory, energy level, everything. 3 hours of sleep is not enough. Is it the hot flashes that mostly wake you up? Mine do too, but if I take something to help me sleep that usually works. I wonder if there is something they can give you to help you sleep through? Keep complaining to those doctors - eventually they will have to hear you!

Amera I agree about the term "remission"  and like the others I really do find myself at a loss regarding a response to give to well wishers.  It is really funny, but when I speak to someone, they very frequently will want me to reassure them that my cancer is gone and that I have gotten some kind of "all clear" from my medical team.  Of course this is not the case.  It is not that I am still "sick", but there was no "final exam" or exclamation that I am CURED.  There is no test I can do to see if I am disease free....I just have to rely on the fact that I feel OK, and I do not have any other symptoms.  Like the rest of you I find myself in limbo....but people do not wish to hear that, and they will press me to explain how the Dr knows that the chemo "worked".  I find it a bit upsetting, because I really do not like to rehash my odds every time I have a conversation, so I have developed a new response and it seems to work very well.  When someone asks me how I feel, I just tell them that I feel great now, and that "all that" is now just an awful memory.  For some reason this keeps people from asking the next set of questions regarding recurrance and the efficacy of treatment.


Tina- yeck and double yeck for poor Paul.  That is awful beyond words.  I wish they could figure out what was causing that and fix it so he can get back to the business of being a healthy young boy!  I second Mary on getting a second opinion.  It might be time.

Congrats on your test results Lynn...nice to hear that it is just ordinary run of the mill cooties and not the dangerous kind.

Nancy it really sounds like you are having a dreadful response to the Tamo.  I have hot flashes and such, and I can definately relate to either being hot or cold....but mine are not as severe as what you are describing, and I find that for me cold packs and dressing in layers works just fine.  I wake up 2-3 times per night sweaty....but I just get a fresh cold pack from the freezer, get a drink and then go back to bed. 

If your quality of life is being impacted so negatively I think it might be time to consider alternatives.  I take my tamo in two smaller doses...I wonder if that would help you.  What is your menopausal status?   You are NOT a downer Nancy....you are just having a rough time, and who better to ask for support and advice than us?  Oh, and you are NOT crazy about the brain zaps....I have heard of them.

Happy anniversary Mary!

well I registered for the Komen walk...it is in October here.  I sent out money grubbing emails and printed up some fliers.  So far I have raised $25 (yay) and no...that does NOT include my own registration fee.  My fundraising webpage is lame....just the standard form.   If I do well this year maybe next year I will personalize it.  I am planning to walk around campus over then next few weeks to see if I can drum up some donations.  I will definately be walking, and so far about 5 of my girlfriends have told me that they will walk beside me.  I am so blessed 

Thanks ladies for the talk. Joni, this is just the 2nd day of changing the tamox to the morning. Although, Jeff told me tonite that several times last nite he checked on me and I didn't believe him, so for once I slept sounder, not any longer time wise but a deeper rest. before a pin drop would of woke me and I did not hear him at all. He said he even felt me to see if I was flashing, he said I wasn't clammy or anything, but that the room was frigid!! LOL, Never noticed.

I asked him to go with me to the Dr. Friday and help me convince her that I am not doing well on these meds. He said he would, but fears it's a useless argument. They (Dr's) seem to have one view of treating you, period. I would be  more than willing to take a sleep aid over the effexor anyday. I asked if I could take my ativan, now get this...splan this to me Lucy...My reg. old Doc prescribes ativan to me umpteen years ago for anxiety, never once mentions an addictiveness to this drug, take as needed it says on the bottle. Now all of a sudden I ask if I can take it with the tamox. and it's well.....maybe for now, I don't want you to use it alot..it's addictive....HUH???

Before it was "yea take it", "now it's hey be careful with that stuff." ARRRGGGG! Did they finally figure something out? Like I always say "how many deer had to be killed here before the sign went up"? This is why I am such a pain in the $%# when it comes to sticking medicines in me. I swear they don't know what kind of cocktail they make people take, they assume everything will not counteract. BAH!

Ok, I guess I'm done screaming.

Yes, Skye I had an estradiol test done and chemo definately took me to menopause land. I am pretty sure I was heading there on my own before chemo anyway cause my periods were wacky.

I bought an ice bag and have been sleeping with that. I think I am going to order the chillow pillow, 'cept I read some not so great reviews on it. but at this point I don't care.

Jeff found me a personal fan I can wear around my neck at the dollar store today. Best dollar ever spent. I want one in every color!! LOL Stock me up!!

Tina, I hope Paul is ok, My SIL suffered from that, I remember how he would take his mom's tampons to use. What is the ususal cause for such violent nosebleeds? Boy that is a side effect from chemo I don't miss.. the taxol gave me nosebleeds. Remember the watery eyes and runny noses? Seems like a distant memory. Yet going through seemed like forever. Everyone take good care, we all have our little things to endure. I am just so glad I'm not flashing alone.

Love you gals!

Nancy if you are post-men, is there any reason you can't take Femara instead of Tamo? It might be much more agreeable for you. I've barely noticed any problem with it. On the other hand, I do well remember those runny noses because I still hve one from the Herceptin. All the time, very irritating. And the burning when I sweat is more and more noticeable. Feels like a thousand tiny mosquitoes stinging me. So if I were on a med like tamo that made me flash and sweat more, I'd really be in for it. I guess we should thank heaven for small favors. :-) Skye

Nancy, at least you haven't lost your sense of humor.  I'm LOL'ing about how many deer had to be killed before the sign went up.  Before we moved to OH, we were like how do they know deer are going to cross HERE?  Do they think they can read?  Scent/trails never occurred to me. 

Mel, glad the spots aren't a huge issue.  I was like what the heck did I miss....

So my visit to Northern Cal to deal with my father's issues was about what I expected. He has been a very uninvolved parent all our lives, but of course, my brother and I are trying to assure the best quality of life for him. He is in an assisted living facility, is very angry about it, but cannot care for himself. He is partially paralyzed and it takes two men to get him out of bed, so we can't have him living with us, we cannot physically care for him. But he is so furious, it's kind of scary. It was a long, grueling day. I am lucky that I have my brother to help with the decisions and logistics, though.

I am really feeling pretty well. The edema is much improved, though after a long day still uncomfortable and it always feels good to put my feet up when I get home. I find that exercise is very good for them, esp walking.  I seem to be able to keep the panic at bay, which is good, and most of the time am pretty positive. I rarely talk about the bc with anyone but you ladies. I find it is history for the few people who know about it. Which is ok with me. I find all of you more understanding anyway. I guess recurrance lurks in my mind, but I try to avoid dwelling on that fear .... I can't do anything about it at this point anyway. I am eating well and exercising, have chosen to not give up alcohol.  I don't drink much but like a glass of wine after work, even knowing the risks. I think that the relaxation it brings is important to me.

Tina, what a tough way to start your day!  And Mel, glad the spots aren't too worrisome. How is everyone else?  Mary, how is work going?

Melia

Jan, I am not sure what else to say other than you are ABSOLUTELY BEAUTIFUL.  I love the picture.  I think you will come to cherish this photo in years to come.  Humungous hugs from a teary-eyed sister in Edison NJ.

Jan, you are absolutely gorgeous. You look so vibrant and strong. I love your hair!

Melia

Just popping in between my Herceptin infusion this morning, back from the hospital to grab a quick nap and then it's off to DD Cassie's High School Graduation tonight.

Jan - you look AMAZING.  Glowing, happy, and the hair is very chique.

xoxo Caya