Starting Chemo May 2008
Comments
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i wonder, why don't they say . . . "baseline at 40 and then a mamm every 3 years or so..."
i have many conflicting and random thoughts on the whole enchildada.
what about overtreatment upon diagnosis and the downplaying of the long term side effects?
what about all the women who scared into surgery by their surgeons before they've had a chance to consider their options?
what about the fact that my sister couldn't getinsurance to cover her brca testing even though it had already been established that her two sisters and mother had the gene mutation?
what about the fact that my doctors had never told me about brca or that my dense breast tissue was more likely to develop cancer?
of the things that have upset me, having to get a mamm was never one of them.
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Im not really ambivalent at all- being a highly HER2+ I am sure that mammograms in my 40 saved my life - I really dont think the panel did an adequate job on several points and I am very hopeful that their recommendations dont become policy.
Kristy
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Otter - Thanks for bringing up the issue and more details of the study. The term "evidence-based" is very big now in many medical/scientific fields but is quickly losing it's effectiveness. [There was a scathing article on psychology and psychotherapy by some non-psychologist journalist in Newsweek recently bashing so-called non-evidence-based treatments, like dolphin therapy. Really?? This is your argument?!?]
But, I digress. My point is that there are many, many techniques and therapies (in psychology) that do work but haven't had the research done to demonstrate that they work in purely "scientfic" manner. However, this does not mean that they don't work - only that there isn't any research on them yet! But with all the hype and dollars supposedly streaming into BC research, why the hell don't we have more information?? This is the part that gets me. Doesn't anecdotal information no longer become anecdotal when a large number of people report the same thing? I have a sign in my office that says "Your perception of reality doesn't change the facts."
Eddie - I just have to say I was awe-struck by your new avatar! Lovely, darling!!
Off to get little people ready for a dance recital. I posted this on FB, but Kelly is the cutest bunny with "Princess Leia" hair!
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Oh! Eddie has a new avatar? ... must go find it ... wow, you look GORGEOUS, woman!
Cristine, I like the sign in your office ("Your perception of reality doesn't change the facts."). I saw a sign similar to that, on a faculty member's office door in the Philosophy Department at my former place of employment. I forgot to write it down, and now it's gone (as is that faculty member).
rock, Re: "i wonder, why don't they say, '...baseline at 40 and then a mamm every 3 years or so ". That's what the mammography guidelines were, when I started getting them in the early 1990's. I was told to have a screening mammogram at age 40, and then have them every 2 or 3 years after that, until age 50. After age 50 they were supposed to be every year. For awhile, the ACS even backed away from the recommendation of a "baseline" mammo at age 40; because the first mammo a woman got in her 40's ended up serving as a "baseline" anyway.
I have to go check out FB, but I need to eat lunch first. It's almost time for 2nd lunch.
otter
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Eddie you are quite the glamour girl!
Now, I am not the least little bit hip, so it's not like me to post links to music videos, but this weekend I stumbled on a song by a group called Ascetic Junkies from (where else) Portland, OR. My daughter and I have been listening to it obsessively for the past 24 hours, and I just have to share it with our group. It's cute and funny, but I think that what draws me to it is the spirit of happy invincibility of the (very, very) young female vocalist. It's what I would wish for *all* of our daughters (literal daughters and metaphorical daughters both). And it's especially welcome after spending so much time thinking about breast cancer and breast cancer screening these last few days.
http://www.youtube.com/watch?v=q-KaV3ezUCE
(The band doesn't actually appear in the video - it's acted out by They Might Be Giants - not sure what the connection is. But whatever.)
Linda
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Good Morning Everyone!
Been reading and catching up on the past few days. A lot going on!
Eddie-I am so glad that the liver is okay.
Rock--I didn't see the post that was deleted, but the post before really got to me. There were 8 children in my Mom's family and all but one had some form of cancer. The one Aunt who (as far as I know), has not had cancer is the only one still alive. I have tried to contact her, but no response, but she does stay in touch with my sister. Anyway, my first thought was that we have the same family! Oh, and I hate tamoxifen too! There are a lot of things that I would like to do, I just don't have the get up and go to do them. I am irritable and moody at times, and that would probably be even worse if it weren't for the Xanax.
Mammograms-I had my baseline done at age 30, due to family history and my Mom being diagnosed at age 42. They didn't give me much of a choice. I didn't get one every year after that, but after 40, they were more frequent. The routine mammo that detected my cancer was just that, routine--no lumps or anything. Even after getting the results, the docs had a difficult time feeling it, but it was there. I think that the decision of when to have a baseline should be a decision made between a woman and her doc, everyone is different. Guidelines are ok, but they are just that, guidelines.
Otter--I am thankful for your wisdom! And your kind, caring compassion.
For everyone who is having tests--I am thankful that all is turning out ok. I go back to my onc in Jan. Don't know what tests she will do as this is my new onc.
Thankfulness--I am thankful for each one of you. You have been my strength and I couldn't have made it through everything without you. I love you all so much and think of you everyday.
I am thankful for my family, my husband, who is the greatest and my wonderful children.
Most of all, I am thankful to be alive. There isn't a day that goes by that I don't think about how close I was to dying last April. About how blessed I am because honestly, I should not have survived that blood clot. I thank God above for watching over me.
Now for a little vent--I have had probably the biggest challenge I have ever had in my nursing career. I now have a patient who is dying of bc. She is 47 years old, was diagnosed 3 years ago and has really had a rough time, especially with family. She is so beautiful and so tiny, they are saying she only has a few weeks left. This has opened a flood gate of emothions within me. First, her age--my Mom died at 47 of bc, I was diagnosed at 47. (I am beginning to despise that number). The first day taking care of her was the hardest--thoughts like--that could be me--in a few years--but then it may not. Then, thoughts like, why is she dying and I am surviving. (Survivor's guilt is what the Hospice pastor calls it--I had a long talk with him on Friday) And I think about Randie, every time I walk into the room. My co-workers have been great--even offering to do her assessments for me so I don't have to deal with it all. I told them thank you, but I have to handle it. So, I decided to put my big girl panties on and deal with it all. I will take care of her the best way I can and keep her as comfortable as possible and I will hold her hand when the end is near. I refuse to shy away from her just because I might get a little uncomfortable. (I did cry a lot when I got home from work on Fri) I have chosen to make this a part of my healing process, accept that I am one of the lucky ones and be the best nurse I can possibly be. But it still breaks my heart everytime I walk in that room. I deal with death and the end of life process everyday, but this has to be the hardest I have ever dealt with.
Now, I am off to watch the baby while DD and her DH close on their first house! Very exciting time for her! We will be having Thanksgiving at her house, but it will be on Friday instead of Thurs, because I have to work.
Love to all!
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Jackie, your post brought tears to my eyes. What a wonderful nurse you are.
Hugs,
Linda
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Jackie - I'm with Linda, tears and goose bumps. That is the attitude that I am trying to take - to do the best that I can.
We found out today that my FIL has lung cancer. They are sending his samples on to Mayo for additional testing so we don't know much more. Anyone have any thoughts or suggestions for me? I don't know anything about lung cancer. I've offered my help. We'll see how that goes - MIL knows everything about anything and we know nothing in her eyes.
Thanks for listening - Julie
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Jackie --I think that some things are meant to break our hearts, make us cry our guts out and the situation you're describing is one of them. But be sure to take good care of yourself, too. Make sure you are wrapped in a comfy blanket at regular intervals, for instance, and having your hand held (sometimes I hold my own hand and pat my own head, if it must be known). I'm putting my hand on your shoulder and giving you a little squeeze right now. You're a beautiful person and a gift.
Julie -- so sorry about your FIL. Feel free to do some uncharitable griping about your MIL, too, if you need to!
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J,
I was diagnosed at 47. I live on 47th Ave. We have 47 in our phone number. 47 means certain death in the Chinese culture (we are not Chinese, we are not Chinese, we are not Chinese). Nurses are the goddesses of the earth. Love you and am thinking of you.
Julie, so sad to hear about your dad-in-law. Glad we are all alive to have to deal with these challenges.
Kristy, like you, Ms Her2 pos, I think a few things have been overlooked.
Have I told you all today that I wish I could give each of you a HUG?
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Actually, it dawns on me that I might not to be with you over the next few days as Thanksgiving is a very busy time for all of us. So...let's take a little time to reflect. For most of us, two years ago, Thanksgiving was as routine as they are -- we had our gripes and our joys and our loves and our challenges. Then...many of us were diagnosed with breast cancer the following winter and early spring. We went through the hell of chemotherapy together and we bonded over bodily fluids and tears and steadfast stubborness. We learned about one another through recipes and fantasies and life stories and the hell of chemo. We stepped up to the bar (the pole) and we kicked cancer in it's ass. We cussed at it and we cried about it and we grieved and we fought and some of us fought really, really hard and then died despite the fight. We have seen others on these boards die and we lost one of our dear ones. We lost RanD but I am getting ahead of myself. Think back to last Turkey Day. Most of us were mostly through it all. Most of us were just getting through the cool lesbian commando hair look and dealing with baby fine curls. We were mostly thankful to just not be going through chemo and the Thanksgiving meal never tasted better because we were surrounded with family and our tastebuds were back. And, still, we soldiered on and THEN we lost one of our own. And we miss her. And we think of her all the time. Time, once more, is flying. It was so, so slow during chemodays. We have each had our scares and our adventures and our learning -- we have each gained wisdom. I am thankful for your wisdom. Happy Thanksgiving. May Thanksgiving 2008 be a reminder that we must always be thankful for our lives --especially the chance to celebrate Thanksgiving 2009 and, I pray for each of us, Thanksgiving 2010-2050 and beyond. Love you.
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That is so beautiful, Eddie. You truly have a gift.
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One more thing (when will I ever stop?)
Sometimes in our rant about pink (blech) and our rant about the people who are working hard to give us a good quality of life, we forget that they are people too. Check this out...
> http://www.youtube.com/watch?v=OEdVfyt-mLw
Hospital workers just want to have fun.
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What I was trying to say is this...even though we rant about pink, you have to see how much joy this brought hospital workers in Portland.
Go to You Tube and put in "Pink Glove Dance" and smile.
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Thank you Eddie. That was perfect.
I clearly remember last years Thanksgiving. What a gift....loving and embracing life and family.
I wish a very happy Thanksgiving to all.
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Eddie is that REALLY you??? Hot! Hot! Hot! Girls, guess what..I've been going hard or going home to the extent that I realized, a bit embarrasedly, (Is that a word?...oh..whatever!) that I had not seen my onc for a year. A YEAR!!! We are supposed to go every 3 months! He was a bit bemused..I guess I'm feeling so well I just went into denial. I had blood done..now the wait. I hope my liver is behaving itself. Rock, I'm with you..the mega-hit of treatment and then...hmmm, your heart/liver/eyesight/bone marrow blah blah blah we have to really watch now. Anyway, I went to Art Camp and didn't take ANY supplements for 5 days..man am I paying the price now. It's really not all in the mind..it's in the glucosamine and the fish oil. I've adjusted mentally to the fact that I have to take Femara. I just pig-headedly dropped all the other stuff and now I have to start again..sigh..It's really mild here, and raining. Big fat drops. The kind of rain I love. And you are the kind of gals I love. Hey..shite and all..I LOVE being alive. XXXX
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Love you all - only time for a check in...
Huge hugs to Jackie and Julie...
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Hi to all my May '08 sisters.
There is no way to be subtle about this. Have any of you changed your mailing address since this time last year? If you have, please send me a quick PM on this site, or a message on FB, or even an email if you happen to remember my email address.
Thanks!
otter
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Otter,
If you get any changes will you be willing to send out an updated list?
Kristy
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Hello Ladies -
Just catching up a bit after the long weekend. While on FB, I noticed that it was Dana's birthday today - HAPPY BIRTHDAY DANA!
Jackie - Your post brought tears to my eyes! I admire your passion to provide the greatest care, despite how difficult it is on you. I agree with Rock, take care of yourself too! You are an amazing person!
Eddie - Loved the Thanksgiving reflection.
Hugs to Julie, sorry to hear the news of the FIL.
In regards to the study, I am also convinced that routine mammograms (in my 40s) saved my life. I never thought (like all of you) that I would be diagnosed with BC. Had I discussed testing with my doctor and been given a choice, I would definately have put off the testing. Scary.
Off to bed. (((((((((((((((((HUGS))))))))))))))))
Jean
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HAPPY DECEMBER EVE LADIES!!!!!!!!!!!!!!!!
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My turn to bitch about the health proposal..... I had my first baseline mammo when I hit 35. I got bc at 37. I cannot fathom how they think this is going to help save money in the long run. Sure there might be a few out there that won't need it as much but when about those who do?? This would be a huge set back in the cure in my mind. grumble grumble. Oh and now I see BRAC testing advertised on tv?!? I had to fight to have my testing to done in the first place.
HAPPY BIRTHDAY DANA!!!!!! (sorry its late)
Had to run for a preg test yesterday. Since my period started up again its been right on the money every time. Now I am 2 weeks late, and was beginning to panic. Been reading up on tamoxifen and it says it causes irregularity BUT I read they prescribe it for fertilization?!? That's where I panicked and bought a stick. Negative thank goodness. And to top things off, after all this time without any hotflashes at all, the past 2 weeks they came back! Not as strong, but still multiple times a day. They seemed to have peaked and starting to lessen. "Oh what fun it is to ride, the hot flash train all day" :OP
Believe it or not, I'm actually not cranky today LOL.
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Jen - Yikes!! I don't know about you (but it sounds like this!), but I'm way over the need to have any more babies!!
I've been home for sick 2 days, most likely with a flu (could be THE flu, but we'd have to test to be sure). Doesn't matter since my doc gave me Tamiflu anyway. Last night, it settled in my throat/voice, so it hurts to talk. Which encompasses about 90% of my waking time. And I learned this morning that whispering fiercely to children who are lagging in getting ready for school is does not work. On a lighter note, and to abruptly change topics, according to Kelly, the 6-year-old, Christmas lights may now officially be put up. She was quite miffed with the people who put them up before Thanksgiving - "They can't do that!" Happy Wednesday!!
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feel better dear cris
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Cris - hope the tamiflu does the trick and you feel better soon. I had some horrible bug not too long ago that managed to replicate the effects of taxotere - ugh!!! That was a flashback I could have lived without.
Jen - sorry about the hot flashes. Is it OK to say I chuckled a bit at your pregnancy test story? I had a similar experience pre-chemo, and it was SO embarrassing when I got to the drugstore cash register and discovered that my chatty retired neighbor was the cashier. Yikes. Then, of course, I had to bury the used kit and packaging deep in the trash lest my daughter see it.
No more such worries for me. Chemopause isn't all bad.
Happy Wednesday to everyone!
Linda
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Cris - I hope you are feeling better by now. We've managed to avoid those bugs so far. Have too much going on these next few weeks to get sick. We have two band concerts, one chorus concert and a piano recital.
Wish me luck - tomorrow are the appointments for my FIL. I'm not sure what I've gotten myself into. I may throw a roll of duct tape in my bag - just in case. I'm not afraid to use it. Please by on stand by with the shovels.
Hugs to all - Julie
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Is the duct tape for you or for your MIL?
(Seriously, I'm keeping your father in law in my thoughts. He's very fortunate to have you helping and supporting him.)
Linda
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Good luck tomorrow Julie....they do say you should never leave home without it...duct tape that is !
I also have a shovel ready at a moments notice....a really big one !
Hugs
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Linda - we'll decide who gets the tape tomorrow. I might have to use it on me before the day is over.
Thank you all for your thoughts and prayers.
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Good luck dear Julie.
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