Bottle o Tamoxifen
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Hi everyone - it is just too glorious here down under - beautiful weather and girls are at school so have some "me" time - and where do I go - here LOL!!! Anyway I have started running again - had a little hiccup a week ago with some swelling on my implant area - groan - also was bitten by a tick on the head which caused some strange swelling behind my ear and near my temple - I knew it was from the tick but the thought of all these lumps on me was just CRAP - never want to hear the word lump again - can we have SFL??? Anyway all back to normal now and running again.
Has anyone else experienced the "let's get out and about in the big wide world" syndrome after treatment? My DH and my DDs are so happy to stay at home on the weekend because they have spent all week at work or at school and with their sport commitments but I am itching to not miss a minute of the world at large - it is impacted also by this glorious pre-spring weather we have been having. I also only work 2 days a week at the moment so get a lot of "house" time.
Fingers crossed for good results on the MRI Brenda and because of the time difference, and I am NOT going to lurk on the computer all day I will say Welcome to the Tamoxifen Train, it is a long trip but the other passengers are the best bunch of women I have ever come across.
Mary that photo is just the Cutest - makes me want to pinch those little cheeks! And so glad you are feeling so good, bruises and all.
Kari - lovely lady - enjoy the day with your daugher.
Also thought I would post this - not sure who has seen it but was posted on another thread and I thought it was glorious (love the dance one Rach).
http://www.youtube.com/watch?v=9choRJAmoYA
big hugs
Helena
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Mary, Yes I agree. The surgeon I am using didn't suggest stopping it at all, Said to keep taking it! But I heard of another surgeon stopping 3 weeks prior and post. So I asked my ONC, who said to stop 1 week prior and post. It is just kooky!!!
Kari, Yes, My situation is so complicated!!! I will post on the motivation thread... but basically, Having implants removed and dong a stacked DIEP/lumbar in New Orleans (NOLA) on Sept 3 !!! ahhhck!
Spring.
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Hi-wow a lot to read and my eyes are closing as need to go to bed BUT...have to say--
Rachael--too funny on the 'big hot sweaty hotflash bear"--ha!
Mary--that pic of your daughter is so cute!!
Spring--didn't realize your surgery was coming up. Good thing you are squeezing in some vacation!
Night night all--except Helena to whom we will say good morning (I think!)...
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A friend of mine on FB and she lives down the road from me, suggested a challenge. Take a picture of your children everyday for one year, I plan to start on the first day of school! My kids are growing so fast it will be interesting to see the progress and to see if I am up for the chaellenge. It will not even be expensive, since I will need to but film or pay for processing. So you may be seeing more pics of all of my kids.
I love to get out Helena and even thought I am not up to it at times, I just go. Yesterday, went to our church picnic and the kids had a blast!
Back to work tomorrow!!!!!!!
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Hello ladies. I have a question, since I forget if the last time I was on tamox, if I had this side effect. Does anyone get the upset stomach, almost like you feel that whenever you eat, you could then...become ill (trying to put this nicely)? I have felt very tired and had that feeling for 2 days now. I don't think it's the tamoxifin...maybe just a little bug. So, I thought I would ask all of you.
Helena...I know just how you feel. When I have my days off on Fri/Sat. I want to DO SOMETHING. My problem is, I am single, and my only daughter who is at home, is usually working..and I only have 1 single girlfriend. So, I find myself staying home alot...not too fun.
Mary...great idea about the pics!! They do grow up so fast. My youngest left for college!! It's unreal..yesterday...I swear..she was only 5!
Take care ladies!!
xoxo
Lisa
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Hi everyone -
Been off this thread for a while - however, was given a three week vacation from Tamoxifen due to every horrific side effect one can get - and it took 2 weeks to get out of my system, and now I feel totally wonderful! However, I have an appt today at 2:30 pm EDT with my med onco to discuss where to go next. I know I have to take SOMETHING!!!! Perhaps a lower dosage in the am and pm as Helena suggested will do the trick. I am just so apprehensive that the depression will return, along with the unbearable joint aches - for which the Vicodin my med onco prescribed really helped. Still pre-menstrual but have not had a period since early June, so not technically post-menopausal. I am in such a quandary. I hope my med onco will be able to answer my questions and put my fears at bay.
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It's me again,
Well here it is Monday and I am going back an forth on the taking of Tamox again. I just don't think I am going to take it. If my reccurence rate is 3% and it can only give me 50% off that, then I don't think its worth the possible side effect. I think I am going to have to pass on it. Will call my oncologist to him know. I already have hot flashes, mood swings/deppresion and bone pain, so this drug scares the crapolla outta me. What do you all think? Am I overthinking all of this?
Dee~0 -
Okay, because I am computer illiterate and can not figure out to put a picture in the post, I changed my profile.
This is a picture I drew as a guide for a tattoo. The angel wings are for my mom, the red G is for all my family members that have pssed to soon and the pink and teal heart are a combo of the pink ribbon for BC and the teal ribbon for ovarian cancer.
I was thinking of either getting it on my ankle or my left side above my breast.
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Lisa - hard to believe you have children in college and I am sure there are men/women lining up to be your partner - beautiful photo!!!!!!!!!!!!!!!!! I hope the nausea is just a bug and not the tam.
Mary - I hope you enjoyed your last day off work and that is just a beautiful tatoo - apparently it really hurts getting it done on the ankle. My sister just had a beautiful one done on the inside of her wrist.
Britt - honestly, my depression just hasn't come back since my holiday off tam and the split dosage - good luck with your Onc - it is bad enough we have to take this crap without all these bl*#dy side FX.
Dee - big hugs. Quality of life is such an important thing. I wish I could help you and take your fear away. Can you take Tam and perhaps Effexor together? The fear of recurrence for me is the biggest motivator everyday when I pop this SF pill.
Have a great day everyone - off to my DD's sports carnival today.
big hugs
Helena
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Helena -
Thank goodness I have a very compassionate, understanding onc!!!!!! Because I am "tiny" as she put it (5' 7", very small boned and 108 lbs) she suggested trying 10mgs once a day for a month. She also wrote out a refill for Vicodin for the pains, should they come back. For the depression, if it does come back, she referred me to a psychiatrist who will evaluate me and perhaps (if the depression does come back as debilitating as before) prescribe Effexor. So that's it for now. She also scheduled a follow-up CT scan for my ovaries (one of which is enlarged) - this could also be part of the peri-menopausal angst I had been experiencing.
So, the game plan is if I can tolerate the 10mg per day for a month, we will gradually increase the dosage should the bad side effects be kept at bay - I don't mind hot flashes at all, or a little bit of a bloated feeling -even the joint aches, as long as I have the painkillers - but as long as the depression does not come back, then I will once again be a Tamox Tsarina!
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Lisa, I agree with Helena, you are a hottie! Your se's sound like what happened to me when I took Sulfa many years ago, turns out I was allergic to it! hmmmm allergic to Tamox? hope not, and hope those se's aren't from the Tamox. Both my DD's are outta the house too (23 & 25) and DH works out of town Sun-Thur, so I am always ready to go go go on the weekend, but he wants to enjoy his house! Sigh....
Dee, tough decision, and I'm sure you've done all your homework and fact finding. Let us know what your onc says. Is there a natural route you can take in lieu of the Tamox? just want you to have all your bases covered.
Britt, what did the onc say?
Mary, beautiful drawing, not sure what would hurt less for the tattoo, I don't have one!! LOL! Good idea about the pics of the kids each day. I wish we had digital cameras way back in the stone age when mine were little! LOL!
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Mary - Love you tatoo design. I was going to get a tatoo for the 50th birthday, but procrastinated, then the bc came along. I am telling myself I will eventually get a tat but just not sure when. Good luck with the daily pictures of your kids! It will be great to review them when the year is through.
Helena - Australia sounds beautiful right now. We are in the middle of a humid heat wave in the Phila., PA area. Enjoy it while you can.
Spring - Good luck witht the surgery & Britt - the Tamox and SE's.
Lisa - I do not get an upset stomach from Tamox but do from Effexor, so a eat breakfast 1st then Effexor and that seems to work. Tamox I take at night.
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Lisa, I have not had any nausea, from Tamox or Effexor. I take both togehter first thing in the morning, with food, toast or cereal. My hubby gets nausea from his meds and he takes them w/ a banana in the morning.
I have always wanted a tattoo on my ankle, but always to chicken(hate needles). Now I really want one. Helena, my sister just got one on the inside of her wrist too.
Spring , good luck w/ surgery
Dee, you have to do what you feel is best for you. There is a Natural girls thread, for homeopathic remedies.
Britt, Good Luck starting back on Tamox. Hopefully CT scan shows nothing and if it does have them removew those pesky ovaries.
Have a good day ladies. Hopefully I can sleep, my summer vacation is over!
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Good news today--my brain MRI is "unremarkable"! I was so happy after reading the report (yes, I get them as soon as they are available) that I almost cried, then I couldn't cry because I was giddy with delight! I finally started the Tamox yesterday, and I immediately had "upset stomach." I had taken it with a full glass of water as instructed. Today I took it with a light breakfast and I had no GI upset at all. I really don't want the GI problems since my GI system was wrecked by T/C chemo and I am still recovering from that. I did have one super hot flash this morning but I survived. (I have been post-menopausal since my chemopause in '96 and have had my share of hot flashes.) Lisa, perhaps you should change how you take it?
Britt, I also am starting with 10mg, in part because I am petite and because I am hypersensitive to meds. I plan to try that dose for about a week or longer if needed, then try the 20mg. I had not thought of taking 10mg 2 x day, perhaps out of hope that I will be more likely to sleep at night if I don't take any late in the evening. Also, I understand well about the depression aspect of hormonal therapy: I told my onc I suffered from "bone sucking despair" when I was taking arimidex, a time when I could barely walk because of severe joint pain. I ultimately stopped the arimidex after over a year because of horrid side effects and a desire to have an at least decent quality of life. I hope your new plan will be successful for you. And Dee, I also understand the struggle of making a decision about hormonal therapy. When I stopped Arimidex, I started taking Evista (for multiple reasons)--which I tolerated well, but since the spread of my disease in January, my onc has recommended tamox. I am very motivated to remain with NED, but I realize this is a very personal choice, especially when it comes down to quality of life concerns.
Helena (thanks for the support) and Lisa, I also want to get out and have a few adventures! Trouble is, I don't have the energy to manage it yet! I guess I have to re-define "adventure" to include little forays into the world for something other than work or treatment. I am hopeful that I will at least have enough energy again to plan a vacation in the fall (probably not to Australia but some place that is still different and relaxing...). Take care all.
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Hi ladies... I am reading... laughing and crying as appropriate... Just about a month before I begin Tamox... hope for my sake (selfish) you're all checking back in then
Helena- that video is amazing. Thank you.
HURRAH Brenda! Ain't it lovely to be unremarkable?
Dee, my thinking is still along the lines of what PatMom said... you already have the hot flashes and stuff, why not take it and see if it makes any difference? Probably wont change anything and if it did, maybe it'd actually reduce the SEs you already have? Could be better... and get you really close to that damn 100% we all want so bad. Then, if it does bother you, you could always stop... so why stop in advance? No one says that there's any permanent SEs on Tamox...
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Helena, --glad to hear you've been able to start running again. I've gone to spinning class, but need a week or two more post-exchange before I can try to run again.
I've been torn about my desire to do more travel post-bc. I'm still waiting for my hair to get to a wig-less length post-chemo, so traveling seems more pain than anything right now (although we're going to Maine for a few days this week, but that is only 2+ hour drive). I would love to travel more if I could instantly get somewhere really different from New England--it would be great to be able to pop over to the US West coast, or to Australia or Europe for just a weekend ;-) since I really don't have the time or $$ right now to take a long vacation. I've been just about everywhere from here within a reasonable weekend's trip distance. Oh well, maybe someone will invent an instant travel powder one of these days. I will say, northern New England is really lovely this time over year, so at least I have nice views to look out from my windows.
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:::warning:::: rant coming
rant on/
I am pissed off and terrified, again and still, and top it off with a bunch of shame. I am pissed off at cancer, at the people who harmed me unnecessarily involved with cancer, and I am increasingly pissed off at anyone who lets me down these days. Like I am pissed off at Kiehl's because they stopped making the hair detangler I really need. I want to tell them how much it's meant to me, with massive tangles until 20 years ago when I found this product, how it helped me with young teens bonding because I could manage their hair and stop arguments with their parents tugging on knots, and then how much it meant to me after surgery and during RADs when I couldn't lift up my arm to properly tend to my hair, but this product saved the day. I am furious with them, as this was a family company in the neighborhood with a history that goes back to WWI and they totally sold out. I get this ANGER that just fills me- out of normal bounds. I try to remember if I would have been this ANGRY before cancer, and then I realize that now I have had cancer for long enough to forget what life was like before cancer. I remember how it felt for weeks after DX when I kept saying that it was only days since the DX and I could still remember what it felt like not to be worried about cancer... somewhere between then and now I officially moved to Cancertown (that's from my fave BC book, Five Lessons I Didn't Learn from Breast Cancer). I lost some part of my connection with my baby, he was 11 months at DX, or is this bit of separation and not exactly knowing how to spend time with my toddler normal, would it have happened without the cancer? Is my ANGER part of the cancer shit? ANGRY!!! ANGRY!!!!
Terrified, well I don't have to explain that much, right? Constantly terrified. And sometimes it's about taking Tamoxifen for 5 years. I am no longer worried about depression, because so many here have confirmed that Effexor handles that, no longer worried about blood clots or increase in uterine cancer because I know although the uterine cancer risk doubles, it goes from .001% to .002% and is fairly easily noticed at exams, and my OB GYN is on the lookout, the blood clots not to worry b/c I have really good health in terms of circulatory system, not worried for a while about ovarian cancer because I just had the PET/CT scan, so what am I worried about? Worried about the stupid hot flashes and maybe also the night sweats. Not that they themselves are such a big deal but how it will change my life and plans. Like the halloween thing, the hot sweaty bear thing, I truly despise being HOT. I like Halloween, I like dressing up and can't wait to share it with my kid. One thing I know is that an uncomfy costume wrecks it. Like wearing uncomfy shoes. I prided myself on coming up with creative costumes that were charming and also comfortable, for me and now for the kid. And as I write this I know how completely insignificant this is, which brings me to the shame part.
I am ashamed that I bitch about this small crap when I am so damn lucky comparatively to so many. I am ashamed that I somehow managed not to know this for the first nearly 50 years of my life, that i wasn't more helpful to others with cancer.
Then that brings me back to the terror and the whole cycle repeats.
I'm Sybil for crying out loud.
Then today I got notice of a Mass for 2 FDNY firefighters killed 2 years ago today at the WTC site, in a building that stands next to Ground Zero. These firefighters, both 9/11 heroes, were killed because of bureaucrat's failures. Careless smoking on the construction job. Two men died.I was a few blocks away having dinner with my family for my step sister's bday. She's an asshole. It's hot as hell in NYC today, I went with wet hair and I was late. As I get near the church, I start seeing the firetrucks and such massing. I had thought this would be a small gathering of just the firehouse that lost those 2 guys. Its two years later and of course 9/11 is coming up. But here were tons of rigs and cars and trucks - the vehicles I have come to recognize. I get to the church and stand in back, recognizing some faces of the firefighters I have come to know over the years. I volunteered any way I could after 9/11. I felt so helpless and useless to help after 9/11, like so many others. I regret that the fire at my home, then the effort to have my son and then breast cancer FUCKING BREAST CANCER have slowed down my efforts to volunteer. The kid I could schlep to events, but fucking breast cancer really set me back in terms of what I could do for the firefighters and the troops. In 2003 I started connecting FDNY firefighters to the troops in Iraq and Afghanistan. I was somethin, I gotta tell ya. I don't say this to brag, but to demonstrate how much I feel I let thousands of people down. I'd send 343 FDNY t shirts, many of them donated off the backs of 9/11 firefighters to the troops in the "sandbox". (343 is the number of firefighters killed at the WTC on 9/11). I didn't realize that all the troops were going to write back to me- intending to reach the firefighters. So I would answer EVERY email and print them out and take them to the firefighters. I tried to get to all the firehouses, I had to be really crafty to find the troops who were "over there". I'd wheel 343 XL t shirts (its got to be 300-600 pounds) two blocks to the post office. I'd do all kinds of crap, and I'd still be able to write and sell articles to publishers. Just the 343 troops over 8 years is thousands- because I never let anyone go. But... I started to fail. The increasing bureaucracy at the city level, the lack of caring for those who FORGOT or never cared, matched with the increasing demands on my time... I had no choice. I could not do it all. Then breast cancer. Fucking shit. So here I am at the church in my shorts and tank top and wet head in a sea of blue "Class A" (dress) FDNY uniforms. Nice Jewish girl at Saint Anthony's. I was there because one of my friends, one of the guys you all saw in famous photos from 9/11 told me abotu the Mass, and I was grateful he did- he's retired. Some familiar faces in the crowd... the chief from my home house, happened to be the guy standing on the street outside the fire at my house. He asked if I got home yet. Nope, still in court. One of my closest contacts - I gave him shit for not telling me about the Mass. He's retired from the FDNY but spends just about every second helping others organize events to raise awareness, honor the fallen, he's organizing a motorcycle ride with other FDNY guys to carry a steel beam from the WTC to Fort Benning GA. We're talking about how to publicize it, how can I help etc. He's also had 2 kinds of cancer. So we get right to that part- its kinda nice in that perverse way that we can just cut straight to the chase to the ugly parts- and we're laughing about how he tried to be macho for his cytoscopy and do it in the doc's office... (BAAAAAAD MOVE. Bladder cancer check, they stick the scope up his penis... He had been joking at the hospital that the lovely nurses in the operating room made it difficult...). I'm just asking him straight out, so what was your percentage with the bladder cancer, and the skin cancer? And then I am seeing the Lieutenant and some of the brass, and they are remembering me because I was always coming down with the letters from the troops and making the firefighters pose for pics- that's the only time I stop babbling at the firefighters, when I am doing something for the troops I get balls. "Go stand there, get the captain, do this do that..." and they do it. I had 3 star generals calling themselves my "errand boys" in Afghanistan. There are firefighters holding their babies in the Mass. And back to my pals, organizing, and there was this one email list of hundreds, maybe thousands of first responders who rode in a 9/11 ride, and the guy running it was some kind of federal officer, but it also became a bureaucracy and now they dont even ANSWER they emails or calls from the same FDNY firefighters they are supposed to be honoring with their ride...
And I feel that ANGER rising again. Its so strong it makes me nauseous. But I look at the face of my firefighters and we do the same thing that we do here. We summon up our courage, we push our old aching bodies to move, and we collect what's left of us and what's available to us today and we do the best we can with what we've got.
No, my life is not at all what I thought it would be now. I have no idea what I actually lost, what I would be doing today if I didn't have BC, what connection with my kid would be. And I may have to face sweating embarrassingly and being uncomfortable. I don't know how we're going to pull off this year's holiday shipment to the troops (fuck yeah I am doing it again, nothing's going to stop me, and this year I want to send them cookies from Cookies for Kid's Cancer, and the only problem there is that the people who are running that have kids with cancer so they are a little busy too), and a whole lot of people really do suck, and a whole lot of organizations and professionals really are shit, a lot of things are really bad, and the best people die for stupid reasons but... I feel better.
What is that? Is it because I got some perspective spending time with firefighters who are remembering 2 of their own lost 2 years ago and/or 343 brothers 3000 others 8 years ago? Is it because I see that they too are suffering and hobbled but at least we are still together, and I am still there for them and they are still there for me?
I don't know. I feel better. I am not feeling angry at the moment. Actually, I am feeling like if I do wreck some future events because I am hot flashing and dripping with sweat, I know that these firefighters are still going to look at me the same way. (It did help that for some reason I am actually looking good in my tight fitting shorts and tank- although I am still 175lbs and acted out eating 2 meals at midnight last night.) It's helpful to me that I could come here and rant about this to you. If I could possibly relate to you the change it made for me, reach anyone who is having similar issues, that would be great. I hope it isn't a burden.
I can even put up some pics of the stuff I was telling you about if you like.
Thanks for the rant, the support, and the sharing of your experiences. Most of all, thank you for OVERCOMING the obstacles.
Oh and I bought the chamois cloths I normally use for drying off my car to sleep on and stuff inside my bear suit at Halloween in case I start sweating profusely. I bought them in Sky Blue so I wont get them confused with the yellow ones I use on my car.
Rant off/
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Britt - boy am I glad you have a great Onc!! I too am 5'7" and weigh 96 lbs and there is some contraversy about dosage with tamoxifen. I also see that you didn't do chemo - like me - even though you had the 1 node - I had isolated tumour cells in two of my nodes. Tamoxifen just has to work for us. I sooooo hope the depression doesn't come back Britt. Hugs.
Kari - gidday - great photos on FB - hugs.
Patti - it seems we are going to have a hot hot summer this year. Hope you are handling your heat/humidity. It was 28 degrees yesterday and it is still our winter !!!!!!!!!!!
Brenda "unremarkable one" - phew! What great news. Fingers crossed the 10mg will give you back some energy and no bone sucking despair - that's what it feels like doesn't it.
aoandrews43 - great to see you - when they invent that travel powder there is a bunk here for you in Oz - and for everyone else too!!
Rach rach rach ... at least you still have this amazing ability as a writer to purge some of the demons - you are an amazing woman and have touched so many people with your kindness and humour. Your kid is so lucky honey. I call it a loss of innocence being dx with SFBC, it takes away your spark, I miss me. But things are OK - there's hope, we just need to cut out the part of brain which stores all this BC shit. I was at my DD's sports carnival yesterday and I ran into one of the ladies from my BC support group, she was introducing me to all her friends as "she has the same thing as me" ... I HATED it, how dare she wreck the illusion I have tried so hard to create, all this bloody surgery to make me look like everyone else. She is only a couple of months since dx so I forgive her, she didn't mean to offend me. But there it is slapping me in the face, I made an effort to look nice and SFBC had to step in. Let me be..
aarrrgghhh - shut up Helena. Enough. Rant alert in hindsight. sorry.
Off for a run today and more housecleaning. Have a great day everyone and I'm so glad you are all here (had to edit this .. I wish so much you all didn't have to be here ... you know what I mean ....)
Big hugs
Helena
ps. Rach - love to see the photos
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For starters... this is the 447th at Baghdad Airport in formation:
Hmmm, what are they doing????
Close up...
343 US Troops in 2004...
In their t shirts from my firehouse, in formation:
I had obscured their sign with their unit information because at the time it would have been a security risk to reveal the troop strength and location. Not sure I can find the original now to restore it.More to come if you like, trying to find the pic of me wheeling t shirts down 4th Avenue to the post office... I made a video presentation here, you can see some of my apartment filled with t shirt packing... and my troops and firefighters up to 2007...
And you know where me and my son will be on 9/11 this year
Oh just a couple from 2007 when one of my favorite troops came back from Iraq via his home in MN, and we got a ride on an FDNY boat (one you saw when the plane went down in the Hudson in January)
Troops from MN with the FDNY on the boat- and nice lady in the background
With my troop penpal, so many stories about him... and funny story about how we got on the FDNY boat... the MN guys he was with were pretty skeptical about me... but I know wtf I am doing. So I was pounding on the Harbor Patrol door and they were thinking I was some kind of weirdo nut job... civilian... hippie freak with the strap on baby... so the Captain answers the door, I said I brought the troops and they invited them in and brought us on the boat. No one more surprised than I. My firefighter friends are even jealous of this ride... no one gets to ride on the boat!!!! Too damn funny, they were our tour guides.
And the troops not to be outdone, sent their shirts back to the FDNY guys, and the captain at my house had all the on duty guys wear the soldiers shirts for their shift fighting fires in NYC...
Yes, even the dog.
So when the same guy showed up from MN who sent the shirts on 9/11 2008 (just 4 months before my DX )
We tried to pose them in their positions
I told him to wear his uniform but the idiot high ranking officer on their trip thought he knew better and they wore civilian clothes.
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Helena you weigh 96 pounds????? Holy cow I could lose that much.
I beg to differ, you have NOT lost your spark. It twinkles even through the Internet.
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crap - I weigh 60 kg - is that the right conversion??? .... still to read through your post.. will be back ...
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Rachel, you are allowed to rant and to be angry. You will get back into the groove of everything, you are a strong woman. Also you will bond again with your toddler. My DH missed the first year of our youngest dd life, because he was training in MS, then deployed to Iraq. She loves her daddy now. Helena 5'7'' 96lbs I wish. I am only 5'3" and weigh more than 96lbs. I won't say how much more!
Today was my first day back at work, the big kick off for a week of inservice days for my 20 hrs training we need every year. Which by the way Rachel, here is a quote that may help.
"What's worht the prize is always worth the fight" Nickelback If Today Was Your Last Day.
I have always liked the song since I first heard it, but listening to it today as the opening for our kickoff, it really hit home.
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I think it is 2.2 pounds to the kilo....
but whatever you weigh, you are a lovely slender woman.
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well now I just feel FAT... LOL, just kidding!!!! And thanx Mandy.
Rachel, I watched a few of the videos, stirring stuff .. also nice to see at the end of one that all the guys came home who sent their Teeshirts. Love you.
Mary - glad the first day back wasn't too bad for you..
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Rachel - You have every right to rant when you need to. I really enjoyed seeing your pictures, very inspiring and your little boy looks adorable.
Helena - I too wish I were lean like you. Tomorrow I have appts. with onc. and BS so I am sure to get weighed, one of the things a hate about Dr. visits. 28 degrees - BRRRR! I really do like warm/hot weather . I guess my internal thermostat is running a bit warmer. I was one that was usually always saying I was cold.
Mary - Good luck with your new school year and I love that Nickelback song/video too. I start next Thursday.
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Hey PattiB - 28 degrees celcius - stupid imperial and decimal - not even going to bother to try and convert that one. But it was hot!! Hope all goes smoothly with your appointments. Hugs.
Meg - Lovely way to look at things, I remember Rachel called what I did "nicing someone" a few pages ago (boy we can rave on can't we!!). I really try to rise above someone else stupidity, b*#tchiness or just plain meanness. You certainly sound like you have reached that space, I have a bit more practice to go. And no weight gain for me Meg - regardless of my lousy maths!
Well, you know how I told you about the lady from my support group at the sports carnival yesterday "outing me", well she just phoned and asked if I wanted to go out for a coffee. We blah'd on for awhile and I mentioned that, please don't think I am being mean but I'm really private about too many people in the area knowing about my BC. She apologised and we blah'd on some more. She called back about 10mins later crying that she had upset me. Bugger!! So much for looking out for myself. We are all just seething masses of hormones and feelings and sometimes even the best intentioned comments make people feel like crap.
I'm definitely taking my seething mass and doing the vacuuming and will not post again today...probably ..
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Helena QOTD, if you are 60 KG then you are 132.277357 pounds
A very healthy normal weight, one that I was... once... 24 years ago... I was actually down to 128 pounds, 58etc kilos. During this cancer crap I got down to 168 pounds 76 kg. My rings fit on my fingers again, Then I went off the diet and ... back to 174 pounds 78 kgs. At 155 pounds 70 kg my thighs get a divorce. This is the best, because i can wear skirts again, and my hippie velvet pants and velvet Betsey Johnson jumpers, a whole wardrobe waiting for me... yes, I am a sweatball, can't wear silk but I can wear washable velvet :)I got down to 158lb 71 kgs in 2005 before IVF (and unsurprisingly got laid, but then I found out the guys were TWENTY years my junior... well that was an ego boost) I fit into most of my clothes at 165 lb 74 kg. So if I can get down to 155, anything lower than that is just gravy.
Yeah some women do lose weight on Tamoxifen, wouldn't that just fucking rock the casbah? I'd dig that big time.
Patmom, I dont know if I have the energy. I just do what I gotta do, as much as I can anyway.My plan had always been for instance, to wear my son while working out, knowing that he would grow- now almost 30 pounds and the weight would increase. I am happy to say that I have regained that lost ground. When I read KAK's research about BC and fatigue I start to get tired. I look at the pics I just posted - it was only a year ago, and I look so much younger- I am REALLY pissed off about these frown lines I got, which were definitely caused during my unnecessarily horrific MRI.
Meg, I can't follow you into that Zen place. I can accept a lot of my new limitations but the part about letting down the troops and firefighters I can neither change nor accept. I do find myself measuring my response with the Cancer Litmus test: Is this worth spending my time being upset about? Another thing I remember studying... there are certain emotions that are specific to humans and are very damaging. Shame, worry and guilt are totally worthless emotions that do a world of damage and have no beneficial qualities. Anger is not one of them. I do channel my anger into positive actions. Fear is not a toxic emotion, its a necessary emotion, example: it triggers the adrenaline in fight or flight situations. But if fear becomes worry or anger becomes rage that's another story.
Maybe the Firefighter's Mass was like a support group- well it is. Something about being with a preponderance of human beings who serve others and too often die in that effort, and continue to suffer while continuing to create while others destroy, and being accepted by them, and all of us knowing that we'll not be able to help everyone or maybe even ourselves in the end but none of that stopping us from doing what we can anyway. Yes, there is plenty of evil and assholes, but looky here at these wonderful amazing people who also exist here on Earth with us. How lucky I am to be in their company. And yes, I did earn it. But I did not run into the World Trade Center while 50,000 people ran out, after two 747s flew into them with tanks full of fuel.
Mary, what you say about your DH missing that year is a super cool analogy. And wow, only days ago you had the surgery and already you're back at work. You are my hero(ine).
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Good morning ladies. Off to work for me. I am taking my son and daughter today, since it is classroom setup. My youngest will go to daycare. The two older ones will have to help move desks and such, since I can't lift over 10lbs. I am listening to the dr this time. After my youngest was born, DH was in MS preparing to be deployed to Iraq, and the hot water heater went and I had to move heavy boxes from in front of it only a week later and shovel snow, it took soooo much longer to heal. I still have pain around my pelvic bone, surgeon did say he was going to look around inside and at my uterus, I guess he took a good peek, since I am still sore.
Have a good day ladies.
Rachel, even if you don't have the energy to do what you did before, you could adopt on soldier and send him care packages. I know they love it and they share w/ their platoon. You can still make a difference, just on a smaller scale until you are up to bigger.
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Gee Rachael, thanks for the good cry.... I was due. Of course the mass had to be at St Anthony's. I actually had a major catharsis there last summer.
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Mary- I am doing a shipment this year, we will make the parcel post deadline for the holiday cut off that's that. What I feel bad about is not being able to write back to each troop, and get their letters to the firefighters, take pics of the firefighters reading their letters and send back. When I started this, there was no program to send packages to the troops. Security risks. No "To Any Soldier" program and there was (as I am sure you well remember) horrendous crap in the media making it look like there was no support from home. This was an illusion, because there were organizations with celebrities to make these events- like if i wanted to "protest" there were parties with famous musicians, they'd feed me and hand me a pre-printed sign with a snappy slogan. But if you wanted to show support, for the TROOPS, regardless of the WAR, there was NO way to do it. No organizations, no parties, no free lunch... and being in NYC and watching all these imported protesters getting the camera time, I was determined to get an alternate message to the troops. Again, this has nothing to do with politics or pro or con for the war itself, but for the TROOPS, who didn't start the war but have to fight it. And again, I started in January 2002, 4 months after 9/11 because I walked into a firehouse and asked to buy a t shirt, and the firefighters replied that they figured everyone had forgotten about them, since 9/11 was so long ago. I was furious then too, and i was going to show the firefighters that we had not forgotten their sacrifice -only 4 months later!!!! We hadn't even finished identifying body parts at that time, or burying the dead. So I bought up their t shirts and started selling them on the web. A year later, when my home caught fire, I had about 200 of their t shirts in the house. They got sooty, but it washed out. Problem was that I couldn't sell the t shirts after they'd been washed as "new". And I am not a t shirt seller anyway, I was just trying to make the point to the firefighters that the world had not forgotten them, but not everyone could find their way to a firehouse to buy a shirt. So, who would want these washed t shirts? It was about that time that we invaded Iraq, and the "anti war" media machine kicked into high gear. I mined my 9/11 contacts- first responders and firefighters are also most likely to serve in the military, and I found a battalion (?) shipping out to Iraq. I had like 200ish shirts, but they had more people in the battalion (again, I never learned the lingo, but its a big ass group of people). So how many shirts do I send? The thought that some wouldn't get the shirts and some would broke my heart- so where do I cut off? Then it became obvious... 343. The number of firefighters we lost that day. So I called the firehouse and ordered up the remainder, explaining what I was doing. When I went to the firehouse to pick up the exta shirts, the firefighters handed me some more bags... they had taken their own shirts off their back to give to the troops as well. (I'll tell you the story of what happened to those shirts next if you like.) So I sent out the 343 shirts and I told the troops that whenever they saw some disheartening news over there, and wondered if they had support back at home, they should hold on to one of these t shirts and remember that there are 8000 FDNY firefighters who are supporting them every second of every day- they just don't get any air time.
When the troops wrote back, and sometimes they were waiting in long lines to take turns to write emails, precious emails to their families, they'd take the time to write to the firefighters and tell them how much it meant to them. But the email address was mine. And firefighters don't write emails. They will fight fires, save your life, literally give you the shirt off their backs but... they WONT write emails. So I would print out the emails from the troops, take them to the firefighters- and this was funny too... I would show up at a firehouse, tell them I had letters from the troops and they'd announce it on the house speaker and all the firefighters would come out fo whereever they were and read these letters like they were from their own family. So I would take pictures of this, and of the firefighters reading the emails, and send the pictures back to the troops who sent them. And I would write real letters. (You know how much I write). Not just wishing them well but you know, on and on. If the troops wrote back, I would answer. So thhis got to be thousands. Many stories... like the time one of the t shirts was given to a troop who happened to be... a FDNY firefighter... who happened to be stationed in NYC originally with a firefighter who was transferred to my firehouse...
5-16-2004: MY NAME IS CRAIG MOORE. I WORK AT E-308 IN QUEENS. THAT IS WHERE TOM LYNCH USED TO WORK, HE'S THE NEWEST MEMBER OF L-20. THANKS FOR THE SHIRT.
A GROUP PICTURE IS ON THE WAY OF THE WHOLE SQUADRON. ALSO HERE IS MIKE MERCEDFROM E-16. SO F.D.N.Y IS PROUDLY REPRESENTED HERE AS YOU CAN SEE.
SHOWING THE CITY THAT THE JOB HERE IS BEING DONE RIGHT. THANKS AGAIN.CRAIG E-308.
And then I went down to my firehouse with the printout and the pic and happened to catch Tom Lynch on one of his first days of work at the new house (which lost 7 men on 9/11).. and he's thinking who the hell is this crazy blonde chick, then he read the letter and saw the picture:
and Tom wrote back (because I was standing there with a pencil)
So this is the kind of thing I can't do any more. It's not for lack of energy or caring, but just TIME. I will send out the shipment again, and there will be letters from the troops again, but I didn't even read some of the letters from last year- no time with the baby and the lawsuit and I thought I could catch up in January... and then I got the DX in January. No... time...
Happily, as the years went by, organizations did happen and the troops did start to get soem support, and there is the "adopt a soldier" program... but I will tell you that I got letters from the troops telling me not only how special it was to have the connection with the FDNY firefighters- a whole lot of people joined the military after 9/11 because they saw what the FDNY folks did, but also because it was so PERSONAL. We are not a corporation donating. I have pictures of the firefighters sending their own car and personally delivering the shirts, I have pictures later of the employees at the popcorn place smiling as they are packing the stuff for the troops with the thumbs up... we are the people of New York City, the ones you don't get to see on TV, and we love and support our troops, we are our troops, are are We The People. We care.
Some of the troops would talk about how much they hope to see NYC one day, and lemme tell ya, when the come here, I take them to the firehouses and they are given the heroes welcome they deserve.
So like... now all I can manage is to send the stuff, and I kinda sorta make the connection with some of the emails I get back, and some of the troops who are on their 3rd tours there, they know me from the previous tours and they pick up the slack as much as they can.
I know I was there when they needed me the most, both the FDNY and the troops, when there was no one else reaching them both to say WE STILL CARE ABOUT YOU AND SUPPORT YOU, and that is some consolation.
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