Bottle o Tamoxifen
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hubba hubba to Hugh! YUMMO!! LOL!!
Meg, same situation with me as far as the tamox goes. Heres to gentle to no se's for you!!
Mary, hope you get a lot of outdoor time before the skies open up! be safe
Have a great day ladies!!
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Year of the Hat, I'm with you. Keep hoping that my period will come. I'm on tamoxifen, but know that once I'm postmenopausal, my Onc will probably start pushing those AIs, and I refuse to ever, ever take one of those. I hate these side effects we have to go through. It's bad enough getting breast cancer, but then having to deal with estrogen blocking or depletion and all the associated side effects of that, is just not fair. I feel that if I get my period, at least my ovaries are still making some beneficial hormones and I don't want to completely lose that yet. The tamoxifen is there to keep the estrogen out of my breasts, but I want to have it everywhere else, like skin, hair, brain, vagina, etc....
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Mary - the D3 is good for cancer prevention AND preventing bone loss - it's a two-fer!
Rose, Year-of-the-Hat - I'm with you both. Our hormones keep us YOUNG. OK, I just turned fifty, so menopause was gonna happen anyway, but I absolutely REFUSE to take AI's.
I haven't had BCRA testing yet, but will. Kaiser makes you go to a genetic counseling class first, and I'm going to that a week from today. My husband is going with me to hold my hand.
The tests I was waiting for the results of were the mammogram and ultrasound they did on my newest lump. Sure enough, they are recommending more surgery - another excisional biopsy. I am so sick of this. I am actually considering having bilateral mastectomies. Not sure, though, if reconstruction can be done on the side that had rads. ARGH! I hate this
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Vivvy, Helena and kmmd - Right back atcha!!! It's amazing how healing a cyber hug can be. I never feel 100% comfortable letting people know when I need their support so all that positive energy is so wonderful. Thank you.
Mary K, Rose and Munchy - it feels so weird to complain when, OMG, I have my life! I've never been anything remotely like a queen but do I have to be downright unattractive? I have got to figure this one out. Hair will help. I'm too fat to rock this pixie.
Rachel I was looking over old posts. You are so much fun. Anyway (I'm not hitting on you) but you are so damn cute and you have great boobs. I can't believe you're 50!
Are any of us ever ready to age? I'll admit as shallow as it might seem, I've always been terrified of aging. I just remember being a little kid and my father crouching down next to me, his knees cracked and I was in shock like "Daddy, what's wrong with you?" He was probably 29 or something!
I can't wait to get my new bigger implants in September. I don't care if I end up looking like Joan Rivers or Pamela or whatever.
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Munchy- I stopped taking the D3 because of what Susan Love said she learned at the June 2009 ASCO conference. There is such a thing as too much D3, so its best to get your level checked before taking it. We get Vitamin D3 from the sun, so I am out in the sun until I can get my level checked.
Under 50, yeah me too, although just by a year or so.
Around this age I was already planning to check my options for anti-aging, so I met with the plastic surgeon and one dermatologist so far to see if my skin is going to change on Tamoxifen, another thing I would do before I start Tamox in September. I see another dermatologist on Tuesday, about using lasers to fix up some skin problems (wrinkles, frown lines, broken capillaries, moles etc... I am not interested in any injectables or surgery, but lasers are OK with me.) The plastic surgeon who would do any surgery I would need later said Tamoxifen makes no difference, and even if I go into Tamoximenopause that would make no difference in my skin, aging or suitability for surgery- she also said that lasers would be helpful if she later was going to do any cosmetic surgery on my face. She's also the PS for the reconstruction stuff. I'll ask the dermatologist I am seeing Tuesday if he feels the same, the dermatologist I saw before (he was a jerk and he doesn't do this kind of laser so...) also feels the same. None of these skin docs see any difference in women's skin without Estrogen. When i was reading KAK's "About-to-Start-Hormones Group"
http://community.breastcancer.org/forum/78/topic/723038?page=22#idx_640
I saw the women who started Tamoxifen in September 08 start talking about their dry skin in December 08 and I freaked out... until I kept reading and saw them all say "Oh, right, it's December, I always get dry skin in December"... me too... and not just as an old fogie. This goes back to the big clinical trial of the 13K women, half of whom were on Tamoxifen and half on placebo, and yes the women on Tamoxifen had all kinds of SEs- but so did the women on placebo! Except the hot flashes and vaginal discharge. That's Tamoxifen, and shows you that it's working.
Meanwhile, back at the salon, I asked my colorist (surprise, I am not a natural blonde... not by a frikin long shot baby... I am dark brown, like my eyebrows). He's taught color at Bumble and Bumble, he's been the makeover colorist for She's Got the Look and So You Want to Be A Supermodel. So I asked him about his older clients who have been through menopause and their hair loss. He said its only noticeable to the client, he didn't see much in the way of hair loss. If you already have thin hair, then it probably sucks more.
All that made me feel a lot better - vanity again. And thank you for saying we looked young in the pics Its one more thing I don't want to give up to (!@#! cancer. I KNOW that @!#&! Dr. gave me the frown line during my MRI, it was effing hell incarnate and I could feel it aging me and I could do nothing about it, just had to save my life first. So I hope when I go to the laser dermatologist on Tuesday he'll say he can erase that damn frown line. So there bitchy MRI doc, so there cancer- FU!
Half the gals on KAK's thread were doing AIs, and I didn't pay attention to that too much. I don't know enough to be scared of doing the AIs.
YOTH, are you 23 now? I want to support and validate your desire to have children. Having breast cancer already, not only the concern for yourself getting cancer worse, and not only giving your kid genes you know have breast cancer, but also the part about being there for your kid when she or he grows, this is totally critical. Nothing hurt and tormented me during the darkest days of my DX like the thought that I was going to leave this kid without a parent. My very first thought was what great parents the people I picked to care for him in my Will would be. At least I can tell my son I didn't know, and I had done everything possible to check before I had him, and I will do whatever it takes to stay with him. Definitely having a child either by adoption or egg donor + surrogate is difficult, sometimes expensive, it aint easy that's for sure... but... it can be done You will be a great mom. I say, don't give up!
Munchy, I read up on reconstruction after RADs, and I had asked my surgeon about it when discussing the lumpectomy. Instead of doing implants, they do the flap surgery. Its a bigger deal, and I don't know anything about the comparative cosmetic results (I think there's a thread on BC org somewhere, password protected, where you can see pics of reconstructions.)
I had excisional biopsy in 2003 and really, it was a breeze. The only part that sucks is the fear of cancer, or more cancer. Would the excisional biopsy be on teh RADs boob? That would be different. I am really sorry this happened to you.
I had a counseling appt before my BRCA test too, it wasn't a class but still...
Totally sucks what you are having to go through, more surgery, more waiting, more tests... I have all fingers and toes crossed that you will have good results on both! That would rock! Sounds like you have a great hubby too
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Rachel - you might be thinking of someone else. I'm 41.
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Oh and YOTH, about the sister...a ton of hugs and lemme just say you are NOT ALONE. I have a long story and already posted too much long stuff, but I'll just say mine and my family situation made me so upset this week I took a freakin Xanax just to calm down, and I also called my therapist and she was utterly horrified for me. I was just mostly ticked off because I had to take Xanax and Valium to deal with the whole cancer thing, and this crap with my sister was not life threatening, it was just sick mental cruelty. Why should I let something other than cancer, something other than life threatening ruin my peace of mind? All I really care about is that me and my boy are healthy. Nothing else matters, or I wish nothing else mattered.
I wish you were not having this problem with your sister, and you are 1000% right about how you are dealing with it. You have more than enough to deal with on your own, and even if you tried you couldn't fix her problem, you'd just get trampled getting in her way. The very best thing you can do to help your sister is to save your own life and health first. You can't help her otherwise.
OK OK, I have to tell a little joke/story...
A man is on a crowded bus and starts singing a little tune..."Yi Di Di Di Di I am going on vacation". He sings it over and over and its really annoying. The bus driver is getting complaints, he tries several things to try to get this guy to stop singing this annoying song. Finally, completely incensed, the bus driver pulls the bus to the side of the road on a cliff. He marches back to the singing man and says "Stop singing that song or I will throw this suitcase out the window".
"Yi Di Di Di Di I am going on vacation" the singing man replies with a smile. The bus driver throws the suitcase out the window and it tumbles down the side of the canyon. "Now" says the bus driver, what do you have to say about THAT?"
The singing man replies, "Yi Di Di Di Di it's not my suitcase!"
Your sister's problem is her suitcase, it's not your suitcase.
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Oh at 41... well I learned the hard way... cancer wouldn't be the only thing taking your child bearing ability away at 41. At 42 most reproductive endocrinologists wont even let you make an appointment. I tried. But, you can still have your family, same as I said above. And there are advantages to starting your family in your 40s
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Hm, I hadn't thought about starting now. I'll need to mull that over. I got a man with a heart of gold, but he is not geared toward having children. I don't know what kind of dad he would be. I have high expectations about parenting and families. Thanks for the encouragement. I do need to give it serious thought. I always beleived I was too lazy to be a mom but that might not be true!
I am sorry that you have an evil sister. My sister hurts poeple but it's all borne of weakness. She's an extremely fragile creature.
I do get caught up in the famimy turmoil. I really distanced myself during chemo and I can see now how....who said that cancer makes you realize you have no control? I think it was someone on another board. It's true though. I sometimes I see my sister as disabled. Well, she really is but she's independent so you are right, it's not my suitcase. Even wothout having children, I have my own family and that's where I keep my energy and my thoughts.
About vit D...I believe vitamins A,D,E and K are stored in fat and I would think you do not necessarily have to take vit D everyday. Maybe this is one reason (fstorage in fat) that peope are getting too much.
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Hi,
Tonight, my Onc.(The Dane) called me. He's never called me before. Kind of freaked me out a little, especially since his accent is more pronounced over the phone, I didn't really know who the hell he was. He got my CYP test results, and he said it wasn't the best results, but still not bad. I'm an intermediate metabolizer. But he said my hot flashes, were a good sign, that I'm doing the best by staying on Tamoxifen, to prevent recurrence. Hey Rachel, didn't you tell me that? Anyway, it made me feel better, and it was nice of him to call me.
YOTH, you look 23, in your photo, and 41 is still young to me, I'm 53 and feel much older. Chemo. knocked the heck out of me.
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Sigh - weekend time for me - yeaaahhh!
YOTH - ROFL about your hitting on Rachel!! And you do look 23 - even though it is a very serious photo!!
Hi Meg - welcome abourd the tamoxi train - we get a bit side-tracked sometimes but always have room for more - just over 4 months for me and alls well - really well actually. Donned a dress, my beautiful high heeled knee high boots and lippy today for work and felt GREAT!!!! Shame my husband sees me in my PJ's when he goes to work then sees me in my tracky dax when he gets home. I'm a hot sexy mamma.
Munchy, RoseG & YOTH I am so there with you guys about taking an AI - I'm 47 and by the time I finish my 5 years I will be in menopause - can't we just stop there!!!!! Hopefully in that time there will be more developments in hormone therapy and long term stats. Fingers crossed.
Rachel - beside being very disappointed in you not being a natural blonde it is winter over here - have I mentioned that ????? and my skin is dry and not looking its best - have I mentioned that???? I do notice in the warmer months the humidity does a have a collagen effect on my skin. Do you think the weather is to blame for the bum fluff I see on my face - Oh no, memories of my Nanna
Have a great weekend everyone - I'm trying to wean myself off the websites - not forever mind you just toning it down a little. Yeah right - see if that works!!!
love ya
Helena
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Whoops - Leggy I would imagine that most people are Intermediate Metabolisers if that makes you feel any better. And hot flashes are an excellent sign that Tamoxifen is being metabolised and doing its stuff. I'm sure Rachel has a link somewhere!!
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Thanks ladies. I think I was 39 in that photo and I look a lot different now. I post it because I look 23 in it even if I look serious. All the other photos are not going up there for a reason!
It must be time for a new avatar.
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OK, so I am backtrack reading a bit, and I read that Rachel is a'year or so' under 50. Whoa. Ya look more like a year or so under 35 in your pictures. Seriously enviable!
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YOTH- wow- how did I miss the post where I nearly got hit on? Story of my freakin LIFE!!!! I disagree, I think you are rockin the pixie. And your pics are gorgeous and yeah I did think you could be 23. Hubby looks like a hunk too. My vanity is really high since the reunion. Many many many thanks for the kind words everyone. And my boobs are the world's droopiest- I swear. I take off the bra and they fall to my knees.
I read once a long time ago they did a study about the people in communities who live really long, like over 100, in good health as a norm. They'd be in a remote village in Russia, a place near the equator, all over, so what did they have in common? 5 things, but i could only remember 3:
Most did not count the years or celebrate birthdays so they didn't know how old they were
They did not eat red meat
They did not worry about their children
Well, I eat red meat but I do my best to forget how old I am, celebrate the birthdays (celebrate anything) but not count the years. Now I have a kid so, I guess that ship has sailed too. And with all the constant repetition of my age age age age AGE with the cancer, I dunno if I can keep up the denial... but I honestly think I look good, and I don't know why. I asked my therapist and she said maybe it's because I am happy. Well I was happy before cancer, a whole lot happier when I was "immortal". Anyway, I ain't cursing my good fortune. I see the pics of you and Helena and everyone, and hearing about how Helena is feeling like a hot mamma (appropriately)- Dont we all look fab?
I think it's about time we stopped apologizing for our vanity.
It's completely reasonable, so much of the world revolves around a female's looks. Not just humans, even in the animal kingdom. So validate your need to feel good about how you look, demand it from your doctors, go for the bigger boobs if you want them, and for those who feel good about themselves without boobs, BRAVA. I passed a woman the other day who had a shaved head with designs in the hair pattern, at first I thought this would be a cool alternative for chemo patients growing out their hair, but that's not the point, is it. That woman wanted her hair shaved and cut out in those designs, and that's great, it suited her, but there's not a damn thing wrong with wanting your Farrah locks back (yes, Farrah, why not).
The women here who are using photos not of themselves because they feel bad about how they look, I feel for you. Big time. You deserve better. This !!#!&! cancer sucks dog poop. If and when you get the energy and are strong enough and as time creeps by literally watching your hair grow, treat yourself well. This is not your fault, and vanity in this case is not a sin. Yes, if I had read those insulting posts before the reunion, it would have hurt me terribly, shook me to my core, but I had basically just returned from a compliment-fest, and I like what I am seeing in the mirror... so it was like Superman and bullets. But for anyone to insult the looks of anyone going through cancer is out of the realm of reason and cruel beyond tolerance. It's hard to remember how beautiful you are when you are going through the effects of cancer and cancer treatments. Hang in there ladies. YOTH, get whatever size boobies make you feel happy
Helena, the outfit sounds totally rockin HOT!!!! Yeah I am thinkin/hopin the same thing... about the 5 years... Like 5 years ago I would be doing chemo- right now. Because they didn't have the Oncotype test 5 years ago. They JUST came out with the Zometa stuff. So 2 years from now, maybe, maybe they will have mo' better stuff for us. I expect to be hanging out on this train for the whole 5 years with y'all, hopefully we can all cast off our Tamoxishackles at the same time. I still don't know what's to fear about AIs yet, I thought some gals like it better?
Yeah about trying to not be here so much... I keep trying too. More on that later. Bottom line: the non-cancer people can't hack what I consider to be normal discussion material, so I need the discussion here and with other friends who have cancer. Its much like my car enthusiast groups. Around midnight my car pal was IMming me from his trip in Italy to discuss the hood switch and car alarm work we did two weeks ago... it would bore others to tears but for us it was terribly interesting. (Mary, how incredibly nebulous and boring was my chat with the guy at the car dealership? You were going to doze off, right?)
Thank you especially for saying you got a kick out of what I write. That's what i was before cancer and before the baby, a writer. Sometimes I write something here and worry that I have hurt or offended someone with what I say, so hearing that it makes you laugh just makes my day. That's what I want. Laughter is good for us. If I ever say something that makes anyone feel bad, I am sorry. Very serious there.
Not a natural blonde babe... like Dolly Parton says, I love it when people call me a "dumb blonde" because I know I'm not dumb and I know I'm not blonde.... And everyone looks better with a little tan, and winter dries out everyone's skin... What the heck is "bum fluff"?
OK OK a link to the hot flash-means-recurrence-is-lower study.
So when I am out with my Tamoxipals in October and one of us starts getting a hot flash, we'll be celebrating that too! Hot flash- YAAAAAAAY!!!!!!!
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Hi Ladies,
I have been on the train for 9 months now. I did not have chemo, only rads. I had hot flashes and night sweats daily, until about June 1st. That's when I stopped getting my period. I can't believe it, but I would like my period. I am 43, the youngest of 4 girls and none of my older sisters have gone through menopause. My concern is that since I am no longer having hot flashes/night sweats, the tamox is no longer working. Has anyone else had this happen to them?
BTW, YOTH, you do look 23!
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Linda- to have the hot flashes taper off after 3-6 months is normal. I will get a study later and post it if you want. (This is all part of my plan... start Tamox in late September, have hot flashes all through the winter, and by summer not have them so much for the next 5 years). Not to worry, it's working You already paid your dues. Enjoy the spoils
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Thanks Rachel! I got to tell you, those hot flashes sucked! But, I was happy to have them, knowing that the meds were working.
Thanks again and enjoy the heat and humidity!
Linda
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Hey Linda - Maybe your body is adjusting to the tamoxfin still - I get my periods every other month. If I am not experiencing the hot flashes/night sweats, I usually get my period within a few days. Give it some time and then I'd bring it up with your doctor.
This entire last 18 months has been a royal pain, not knowing when to expect it. For so many years, I was on the bc pill and it was so convenient knowing exactly which day it would arrive!
Figures we have the heat and humidity today - no desire to get into a bathing suit. I didn't go in the pool at all last year, so let's hope the rest of the summer brings some heat!
Have a great weekend everyone! I'm so glad it's Friday and it's quitting time for me!
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Thanks Murph,
My onc is on maternity leave for July and Aug so I will see her in Sept and bring it up with her then. I was also on bcfor YEARS and now wonder if that caused my breast cancer.
Hot and humid!! Yucky!! I have to go to Church tonight to watch the kids in their vacation bible school preformance. It's always 200 degree's in there!
Have a fun weekend,
Linda!
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Thanks Rachel, your a wealth of information, and an inspiration.
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Yep ... don't say anything ...I'm back already. Forgot to mention I received my results from the gene testing - negative, well as negative as they can say to Ashkenazi (thats testing for jewish heritage/eastern european) Yeah!! Just waiting now for the BRCA1&2.
YOTH - how beautiful - you are certainly channelling the Mia Farrow look and I'm so happy you have a wonderful husband - I remember reading about Linda's wonderful husband on another thread awhile back - it really must make such a difference to your quality of life.
I took the contraceptive pill for years as well - my younger sister swears that it is what caused her cancer. She now has a 14 year old daughter and is dreading the day when she has to deal with the inevitable discussion. I'm in denial as the pill was just wonderful for me as I suffered terribly from PMS and irregular periods prior to taking it.
Rachel - bum fluff - is this another one of our Aussie colloquialisms? It is the fluff boys get on their face when they are just stepping into puberty (prior to shaving). Older ladies also get it - another menopause/aging crappy thing. I think I will just add that to my denial box as well - mmm better get a bigger box. Also Rachel I feel like your writing is the glue that sticks us all together - and I don't mean that in any bad way about everyone else please cos I love you - but this thread has become a wonderful haven for me, and I don't think I can give it up so book me in for the 5 year ride (well 4 years and 8 months). I look forward to seeing you all every day - freaked me out seeing a different photo of YOTH though - didn't know where I was!! LOL.
Meg (ivorymum) - congrats on your first day - are you splitting your pill as well? Hope the weird feelings subside - by the way I also get chills on Tamoxifen. Hugs.
I'm off to a barby (yikes here I go again - that's a bar-b-que) today at lunch time and going to partake in a few glasses of wine and you know I won't even have to talk about my BC as I purge it all here (and my local support group).
Not sure if it is the right thing to say but I would love to know how everyone came up with the "names" - Leggy/Makraz/Princess/Ivorymum etc.
big big hugs and have a great weekend everyone
Helena
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PS. Anyone heard from Jules4ever?
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I will be starting tamoxifen next week. Today as my last day of radiation and I cried! The last 6 months have been a roller coaster. It feels strange not to have an appt.for another 1/12. Its kind of nice! I am a little worried of the se's. My 10 year old was talking to me the other night and said I kind of had an additude. I laughted! He was right. I am a single mom with 3 boys 10, 15 & 17. I am very tired from the rads. I told him not to worry the meds the doctor is putting me on could cause somemore "additude" from se's!! We both laughted. I am thankful for for all the posts. It does suck but its nice to have "friends" to go thought it with!!!
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Lauren - well done on your last day of radiation - have a good cry - cry cause its sad because this disease sux but cry with the relief and happiness that that part of your treatment is over. (((((hugs))))) I have a 10 and 7 year old and I had to have a family talk about "my attitude". Honestly though, I love my new attitude, very liberating although a little scary for others!!!!
All the best with your tamoxifen - no major side effects for me (well no major ones) so fingers crossed.
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Hello, fellow Train Riders ~
I've finished my first bottle with nary a hot flash in sight. I'm concerned because I take Wellbutrin, and the info here at BC.org says that Wellbutrin is high on the list of drugs that can interfere with metabolization of Tamoxifen.I mentioned this to my onc, and he didn't seem very concerned. I think I'm going to speak to him a bit more seriously when I see him again in two weeks. If he still waves me off, and I'm still having no SE's, I might wean myself off Wellbutrin and see what happens.
Has anyone any experience and/or advice about this? Thanks a bunch!
Hugs to all,
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Lauren, I cried too! I thought I would be so relieved, but I got in the car and cried the whole way home. My DH wanted to go with me and I told him no, it was no big deal. Boy was I wrong!!
It will get easier!
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I have been reading a while as I check 3 discussion boards, March chemo warriors, June Rads, and this and have just returned from a couple days at the beach in Margate, NJ so forgive me if I forget something.
RachelIBC - Trying to connect Mary in Poconos and you in NY going to same doc? (just curious or I misread somewhere). It would be great to meet with you anytime, I am off in the summer, like Mary, I work for a school district (clerical), so maybe the three of us, and whomever else could meet. Many pages back I had mentioned that I had read the best way to get Vit D was 15 minutes of sun (can't remember where I read this) In Feb. my Onc. doc had reviewed my GP's bloodwork records from Oct., which was prior to my diagnosis and saw my Vit D level was fine, which surprised her. I have a daughter who plays Field Hockey and Lacrosse, I always watched her games and also walk our dog on an almost daily basis, so I guess this was my Vit D exposure! However, I did buy a bottle after reading the board back then. I am not surprised that you found the information that you can have too much VitD and will definitely ask my Onc in August at my next appoinment her thoughts on this. She did mention getting the level tested again at some point. I think Hugh Jackman is gorgeous and have seen him on some talk shows for his Wolverine?? movie and he seems to be so genuine and down to earch too.
Linda: I started taking a minimal dose of Effexor for hot flashes that were chemo induced. This drug definitely makes me feel different and did notice a very slight numbish feeling in the lower half of my face and I am sometimes a bit spacey. I notice this more when I don't eat something solid for breakfast before I take the pill. I have taken Tamox 2 days so far and don't feel different. Still have mild hot flashes, they were much more intense before taking the Effexor med. My point being everybody reacts differently to meds. It may seem weird but since I started chemo I have kept a record of each day - what I eat, drink, meds I take, SE's , exercise, etc. This way when I call or go in for an appointment, I have a good recollection of what I am calling about and exactly how/when I was feeling an SE. This was mainly for my SE's during the 3 months of chemo treatments because the onc's wanted anything out of the ordinary reported to them ASAP. I have just kept in the habit. When I read something on this website that I want to know more about, I write it in the back of the notebook to remind me to ask my onc at my next appt.
YOTH - I feel the same about my pixie hairstyle. In a few months or more our hair will be a bit longer and hopefully we can work with it better. I have been keeping my eye open for short syles that I may want to try as it grows out. Who knows we may find something more flattering than how we were wearing our hair BFC (before fucking chemo/cancer).
Thank you all - because of this board I know to ask about VitD, CYP Test, and AI's vs. Tamox., since I am also one of those that isn't sure if I am really Pre or now post menopausal (I was regular before chemo but haven't had a period since the beginning of April) and recently turned 51.
Have a great weekend all, I wish I could find a good Hugh Jackman movie to watch on cable this weekend!!!
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My last rads. was great, I was so happy! Then 6wks. later I had a follow-up with the doctor, and asked him for the straight talk. Then I cried all the way home.
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I think I meant to reference Meg instead of Linda - see spaciness from effexor, chemopause, etc.
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