Starting Chemo April 2009
Comments
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Hi again girls,
Nope, nothing new really happening, just checking in to make sure you don't think I died yet, and, I could use something interesting to do while I wait for the pharmacy to deliver my Tamoxifen. LOL.
Well, OK, maybe something is up for fairly soon -- that trip to NH to spend some time in my Pack Rat's Nest in the North. He mentioned it when we were on the phone the night before last, but at this point it would only be for a weekend. I may have mentioned to you gals that not only does he live a life of total chaos, but he also brings chaos to order, right? So the current chaos is him having to make the bedroom of his house "habitable" again. LOL! See, he was going to remodel it and had started, but when he realized it was going to take longer than he thought (plus a job in CT plus other more important Projects came up), not only did he stop working on it, but started using it as a "storage room" (yes, even *I* shudder to think, since I know what a Pack Rat he is!) -- so when HE says it's "uninhabitable" the way it is now (and that he's been sleeping on a cot in the living room when he's home), I can only laugh my ass off as I take him at his word (there are folks who would consider my apartment as "uninhabitable," and let me tell you, though it's true by "normal people's" standards, next to HIM, I'm Martha Stewart!). Ahhh, this is what I get -- albeit happily because I love him like I've never loved anyone in my life -- for having decided that my primary definition of "the right guy for me" is "someone who is as weird, or weirder, than I am." Well anyway -- he said he started getting the "storage" accumulations out of the bedroom this past weekend and plans to do more with it this coming weekend. Well, his current job is in CT actually kind of makes it a little easier on me with my driving phobia -- I'll be able to meet him there (2-2.5 hour drive: the full drive to NH is 6-8 hours which is why I normally was only going up there once a year except for when he had work in CT). So I meet him in CT when he gets off work, and he takes us the rest of the way. (And, out to dinner, too. :-D). We'll spend the weekend, he'll drive us back to CT and on the Monday morning when he goes to work, I'll come back here. Just like old times, actually, only kind of better since I don't work now. I used to have to work through lunchtimes, stay late and/or go in early to make up the hours permitting me to leave work early on Fridays and come in late Mondays on the occasions I went up there, which was about once or twice a month (in the spring/summer/fall since I'm also afraid of driving in snow). My boss at the time was unexpectedly generous and flexible (as long as I put in my hours/got the work done, she was cool), but it was kind of a strain anyway.
But now I have to figure out how I'm going to deal with being "away" for more than a very few hours at the most -- since this whole chemo/hairless thing started, I've pretty much (voluntarily) shut myself in even more than usual: Since April, I've only been out ONCE for anything not actually required (i.e., anything that wasn't doc appts, tests, treatments, chores or errands like food shopping etc), and that one "unnecessary" excursion was only for a couple of hours -- I took my iBook to the park -- a five minute walk from my apt building -- on the Saturday of Memorial Day Weekend, and hung out there playing sims and reading some of my old stories for 2-3 hours (until the iBook's battery needed a recharge LOL). See, for me it's been such a major effort, being unable to go out without wearing a wig, to "be human" for more than a short time, that usually I only go out for what's necessary to do and run back to my apt screaming with relief, because what with the hot flashes, the wig would get really uncomfy -- but I'm way WAY too embarrrassed about my appearance without it to even THINK of taking it off anywhere BUT inside my own apt. I can deal with the uncomfy for a few hours for "absolute necessities," but it's really hard otherwise. Even though my Pack Rat has emphatically told me repeatedly I'm seriously overreacting on the Hair Thing (and as I mentioned, he's SEEN my bald head and the Mycelium, although I'm still shuddering to think of those times which I kept at minimum possible), I still feel like being "away" for a whole weekend will mean alternating discomfort (keeping my wig on in spite of hot flashes), and then embarrassment if I relent and do take it off, because I simply cannot f***ing stand the way I look bareheaded or even with the scarf -- STILL. ::::sigh:::: I guess I better figure out how to deal with it though, because, presuming I even live that long, it's going to be several years before I'll have enough of my real hair back to not be embarrassed by the idea of even opening my apt door bareheaded. The last couple days, since this visit idea came up, I've been trying to tell myself, "instead of the long hair maintenance issues in the past, now it's 'wig issues,' which are 'normal' if I want to look nice." But I still have trouble with the idea that I can't just run out the door anymore, even though I've been living with it for five months now, and have been on the insular/hermit-like side since I was in my mid-30s, and it makes me miss my pre-chemo hair (INCLUDING the long showers for extra conditioning/two hours combing it dry after the shower/hairwash) all the more.
OK, enough rambling and ranting here....(sorry girls, looks like I'll NEVER be able to stop ending up in frustrated irrational rantings about the hair unless or until it all grows back).
Chelev -- Yup, you should have seen me with that full bladder ultrasound. When the tech ran the instrument "too near" my bladder I exclaimed "OH!" involuntarily. The tech asked if she'd hurt me, and I said, "No, I really just need to use the bathroom." It happened 2-3 more times, each time my mention of needing to go to the bathroom becoming more emphatic, up to the final "I REALLY NEED to use the bathroom NOW!" LOL! Mmmmm, looks like I missed whatever post you may have mentioned that you're on Tamoxifen too. But yeah, that waking up in the middle of the night from the hot flashes really sucks! I know how you feel!
Titan -- LOL! Well it wasn't MY dildo (or even really an actual dildo, it just LOOKED like one!), it belonged to the Women's Imaging Center at the hospital associated with my cancer center...and, my Pack Rat's "toy" is, er, much better. But remembering that he's a mechanical designer/inventor and, um, has something of a thing for, um, mechanisms (I decline to elaborate any further on this since I know there's at least one self proclaimed prude in here LOL), you gotta figure I just HAD to tell him about it ASAP, especially about the part where the tech asked ME to insert the "dildo-cam", at which point I imagined how it would've been if my Pack Rat had been there, I could practically hear his voice in my mind thanking me for giving him a "show!" So when I told him about it on the phone that evening, that's when I said he had to use his mechanical and creative genius to invent some kind of device to attach to "himself" for if I ever need another transvaginal ultrasound. And he did say he wished he'd seen the "show" (plus said he wanted to "experiment on me" hehehe). Oh and yeah, I also saw that other thread here at BCO about BC awareness month and I totally agree with you -- I have had enough breast cancer awareness to last me a lifetime! Grrrrr!
Alaina -- I keep hearing that term "new normal" around here at BCO, but something inside me really rails against it. Probably because I ended up with what some people here might call a "new normal" of sorts after my stroke in 1993, and to this day I can't say I EVER really "got used to" my left hand being partially paralyzed and my balance being "off," even though it's been this way for almost 16 years (my "stroke-iversary" is in November) and I've learned the limits/made what adaptations I could to accommodate/compensate. I just don't consider the aftereffects of this kind of stuff to be "normal." Sure, my energy and mental function have returned a good deal since after finishing chemo, and, I'm once again able to do most things I enjoy doing, but even if all I'd had was the breast cancer, I can't imagine thinking I'd ever be any kind of "normal" again. Even if my oncologist decides that a mastectomy won't do me any good so I don't have one, my right breast is still very misshapen and there's no changing that, ever. And of course if I do have a mastectomy, the lack of the breast and any "battle scars" I get from the operation will not be normal either. You are absolutely right when you say, "Nothing will ever be the same again." I hope the torture is getting to be slightly less torturous as you improve your range of motion -- I remember my own physical and occupational therapy after my stroke and that was no picnic either. It rarely qualified as torture, but it was horribly frustrating. {{{hug}}} Oh, and while I'm with you on the Welch's grape juice (yummmm!), you can keep the pomegranate blueberry and crushed ice! LOL!
Gotta go now, my sims await me. :-) Catchya next time.
~Lena.
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Titan......the onc thinks that the lump is a benign tumour ...fatty tissue.....it's been noticeable now for over a month. I'm seeing the surgeon on the 19th and I assume she'll want either a biopsy or other diagnostic test to find out what it is. I would like it removed and so far am also assuming it's b9....but it's a worry. My hair is only about 1/4 in after 15 weeks and it doesn't come even remotely close to covering my head....but there is more hair there than there was a month ago so even though it's slow it is growing. I think the Arimidex is slowing it down.
Lena, enjoy reading your posts ... love the details
Dawn, loved seeing your pics with your short hair ... you look great and it seems to be growing fast. Since I've ahd radiation on both sides of my chest and underarm, I don't have any growth on either side anymore...When I had it I used to get it waxed. It would be nice to still be in that position.
There's no sex in my life these days so I don't know if the chemo or the Arimidex has caused a problem. Makes me sad to be in this situation.....and I get lonely.
I'm going to participate in a study starting tomorrow. It's nordic walking - run through the cancer centre. I'll get more details tomorrow but I think they are studying the impact on recovery. I'm looking forward to this and will give you details once I find out more.
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G'mornin', girls...
Think I'll have my morning coffee with you all today. ;-)
Dawn -- yup, feeling better -- I think the "stomach attack" thing is
finally ALL gone as of yesterday. (hope I didn't jinx myself by saying
that!)...I didn't think I could fill my bladder up that much either --
I'm also frequently off to the bathroom to pee, especially in the
mornings (I cannot survive without my 2 cups of morning coffee, but
there are "side effects" LOL). Lucky you if you're becoming a woman
again when it comes to the hair downstairs....I wasn't surprised to lose
it when I was on chemo, but I'm shocked it's not coming back PFC
especially when I've got the mold growing on my head. I'm not growing
underarm hair back either. My leg hair (which was shockingly always thin
and light -- how did I have brown hair on my head and very light blonde
hair on my legs?! but it was true!) -- I only had to shave my legs twice
a week in its heyday, and by the time I was diagnosed with BC, I hadn't
had to shave them at all in well over a year) mostly disappeared when I
was in my early 40s. I still don't have underarm hair back either,
although I did still have that even just prior to chemo. Hmmm, now I
wonder if this is a hormone thing, my underarm and hair down there not
growing back at all, so, Dawn, are you on Tamoxifen? I am, and now I'm
thinking maybe you aren't, and it's the Tamoxifen "killing" my hormones
(to keep my hormone positive cancer under control) which is keeping the
womanly hair from regrowing (after all, pre-pubescent girls don't have
that hair yet, so maybe I've been thrown back in time?)
Betsy and Titan -- on the sex subject....chemo didn't dry me up or make
sex painful or otherwise uncomfortable (on the very few occasions I
actually had sex while doing my chemo, that is), but it did kill my
libido as well as the energy I'd formerly had for sex -- I completely
lost INTEREST in it, and only my Pack Rat was able to (temporarily)
revive my interest a bit while he was here (and we enjoyed sex together,
but due to my lack of physical energy, didn't have as much sex as we
normally would have pre-chemo). But between his visits, I was almost
completely asexual and in a panic upset about it because that's just not
ME! I always had an extremely strong sex drive and the loss of it
(combined with being hideous and feeling like crap all the time) made me
freak out and tailspin into a depression. PFC, my libido has
returned...to maybe 3/4ths of what it used to be, so far. And another
difference I notice now is that it takes me longer than it used to, to
get to the, um, "finish line." I'm hoping some more time PFC will bring
the rest of the libido back and that I'll be able to "run faster." LOL.
Betsy, glad to hear you're able to use the Vagifem and it helps! :-)
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Betsy -- (non-sex chat LOL) Yikes, I'm sorry you're having bone pain!
But, to take part in your "survey" on if any of the rest of us have PFC
bone pain: I didn't have any bone pain when I was on chemo or even from
the Neulasta shots. The only bone pain I've ever had at all is from the
met in my left iliac bone (which I had before, during and after chemo).
I'm kind of surprised I still have it PFC, seeing how my post chemo
scans showed that the chemo shrunk the met -- so you'd think this pain
would go away or at least not be as intense? But no, it's exactly at the
same as it ever was -- intermittent (I don't have it constantly: it
shows up usually at intervals of days or weeks), and when I do get it
(98% of the time I get it when I'm in bed -- sometimes it wakes me up in
the middle of the night or I notice it when I wake up in the morning
after a full night's sleep), though it hurts kind of bad, I only have it
for maybe 20-30 mins tops -- less if I get out of bed. Must be the way I
sleep (lying curled in fetal position on my left side) which aggravates
it or something. But anyway -- the taxane component of my treatment was
Taxotere, not Taxol, so perhaps the diminution of chemo side effects is
different for us as individuals and from different chemo cocktails? My
oncologist and chemo nurse had told me it would take "up to six months"
for all my chemo SEs to fully clear...so maybe if I'd had bone pain from
chemo, I'd still be having it occasionally now, since I'm only several
WEEKS PFC at this point?
Titan -- (on non-sex chat LOL)...where are you going on your vacation,
and when? Are you comfy going completely bareheaded now? (wow, what a
concept!) I wonder if drinking enough wine would lower my inhibitions on
that... Hahaha...probably not -- getting THAT drunk only serves to make
me sick to my stomach and throw up! :-P
Helen -- sounds like you're probably a Fuzzie the Moldie just like me
when it comes to your slow and uneven hair regrowth. Like you, my new
hair is still a long way off from covering my entire head. Did your hair
used to grow fast or slow before chemo? Mine always grew slowly, so I'm
not at all surprised about it growing slowly now, and that's why I
expect it to take YEARS, not months, for me to be able to retire my wigs
and go free-n-easy bareheaded. Thing is, since I'm a Stage IV, I may not
have those years, so I may end up horrid looking for the rest of my
life. Good luck with the Nordic walking. (I'll have to Google that -- I
know what walking is, but not Nordic walking!) -- and hope that thing on
your arm is indeed benign!
Catch you all next time!
~Lena.
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Lena...we are going to North Myrtle Beach...staying on the beach..I'm excited..it will be the first time that my DH and I have away together since..well..a long time..this will be new for us!
Nope..haven't gone topless in public yet...not ready yet...I'm having it colored in 5 weeks...pretty much the color of my wig...thinking that will make the transition smoother..I will go topless then.....I'm planning on taking the wig with us to the beach too...not comfortable going anywhere without it...yet! I never wear it at home anymore/
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Hi all, sorry I haven't been in touch, things have been a bit crazy, I am keeping very busy and am v tired, but I think that is a good thing. Hair is coming in, but seems to take forever. Stomach is more or less ok, but I still have bad moments which I find annoying. Apart from that, can hardly believe that I am nearly 10 weeks out!
I am reading the boards regularly, but sometimes, I just cannot get to the computer to write. I love reading your posts, you are all amazing!
Take care, hugs to all, Judy x
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A Quick Note of Thanks. You ladies told Annabelle and me about the Claritin (or generic) remedy for Neulasta bone pain. We tried it and it worked.
We shared it with the Breast Health Navigator for our county's hospital system. She had never heard of it, nor had any of the medical oncologists practicing in the hospital system. They tried it and their patients liked it.
Now all of the medical oncologists in the entire conty hospital system are recommending it to their patients. Thanks ladies!
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Dutch..good to hear from you...my mom's name is Annabelle! And she is a wonderful, beautfiful lady like I'm sure your wife is...! I like your motto..one day at time...live them..and enjoy them...! Glad the claritin worked..I also used it..thanks to Dawn..still some muscle pain..it wasn't perfect...but it probably would have been horrible without it...how is Annabelle doing..done with chemo soon? What next?
Judy..you are so busy with your kids and that is a good thing! They are so precious and grow up so fast..mine are 21 and 19 ..not sure where the years went..sometimes I wish I could go back to just one day when they are tiny and in their jammies..oh well..must move on...
Helen...being the internet nut I am I looked up "skin cysts" and that is exactly what I have...why don't you do that..I know that your LUMP is nothing...don't freak...but..I'm definitely keeping an eye on mine but not worrying about it ..yet....I remember a few years ago my OBGYN said "it we went to the dr over every little bump we would be there all the time"...well yeah..that is us now...and they will have to deal with it...
Dawn..haven't bought those hoops yet... as graceful as I am I will probably tear a hole in my ear..doing that cartwheel..I do think I'm going to try it the last day of rads...The rad techs will love it..they are a great group of ladies and I love them..and will miss them...believe it or not.
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Hey all...just heard from my sister the path report showed cancer only in the uterus and they got it all with surgery. The ovaries and cervical were clear. She doesn't need chemo or rads..TG!
Titan- I love my rad tech team too! It's strange how attached I've gotten to them in such a short period of time, maybe because I see them daily! I am so pumped for Monday...it's my last boost (rad). I've been feeling tired but good. My boob is still sore, red, armpit is black... after a couple of weeks of healing...I'm looking forward to movin on!
I returned my wig today, never did wear it but kept it around just in case. I have gone topless the entire time. The only time it bothered me is when my eyelashes and brows were gone. Now I have hair coming in everywhere...I'm beginning to feel like Chewie from Star Wars! I was never this hairy before...so be careful for what you wish for, all this facial hair really sucks. Good luck to everyone as you venture out topless...it's not as bad as you might think.
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Thanks for all the encouragement... much appreciated. The first time I had chemo, my hair grew back at a pretty good pace and I could go without the wig or hat or anything after 3 months. I'm at the 3 month mark following this chemo and it's a whole different game. The onc thinks the Arimidex may be causing it to grow slower. Lena, sounds like that libido is coming back nicely. Hope others are finding success. I think my libido died but since the guy I was seeing isn't around now, it doesn't matter a whole lot. And even when I think about sex, I have trouble visualizing anything without my breasts....... sigh!!!
I had my first Nordic pole walking lesson today .. there were 4 of us....all bc...recently completed tx. Most of the time was spent showing us how to use the poles and then we walked for about 30 minutes getting used to it. It really gives a good workout.....strengthens core and arm areas while walking. It's a 10 week pilot project and we are part of a study.
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Hi, everyone! Okay, here are some pictures from NY and the Dream Ball. As you can see from my "thrilled" expression, I was not happy with the makeover. But, I was happy to meet Hoda Kotb from the Today Show. And, I had a lot of fun with my sister during the remainder of the weekend, which of course involved eating great food, drinking great wine(s) and SHOPPING!!
I still get bone twinges and breast pain from time to time - the breast is still tender from rads, but I also get strong pains I guess from surgery healing. Also still bothers me around the port area.
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You look beautiful!!! I understand what you mean about the makeover but you are radiant. I'm so glad you had a great weekend.
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Thanks, Helen!
How are you feeling? Hair coming in any faster? One of the women, the older lady with the short sassy 'do is 18 months out of TC and she does not have hair on the top of her head save for a few long gray ones, and only has hair around the ears and back, sort of like Ben Franklin. Scares me to see what potentially TC can do to you!
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Titan - you are so right! The kids are precious and the years run away. Still, I cannot complain that I have the strength to be busy.
Hope you all have a good weekend, hugs to all,
Judy x
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Here I am on at my birthday dinner with my daughter, 9 weeks PFC. I didn't lose all my hair and that's why it seems to be growing back faster. It is A LOT more fun watching it grow back than it was watching it fall out!
I hope posting this picture works. If it doesn't show up here, somebody please post how to do it. I couldn't find the instructions on the site anywhere.
Thanks,
Click link to see picture. I never did figure out how to get it to show up here. Hellllllp.....
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Hi Chelev, the hair growth is painfully slow. There is peach fuzz on my head but my scalp is not covered ... and this is at 3 1/2 months PFC. My onc said the Arimidex could be slowing it down but she says she has never had a patient where hair does not grow back ... just slow sometimes. I also have nothing on my arms or legs........The lack of hair on my head is getting me down.
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Amy...when I click on your picture I see it...you look beautiful! It's a great picture of you and your daughter. I am also a 9 wks pfc...your hair is so much longer than mine. I'm happy for you and hopefully soon the rest of us will catch up with you.
Sorry, I can't help you on the techie stuff...I'm a true luddite. I didn't get a cell phone until nine months ago. It wasn't until I got on this site that I had ever even seen the acronyms LOL or dh...and Lena...I'm still clueless as to what a sims is???? Quit LingOL!
Helen - your Nordic walking sounds interesting and healthy. Until my poor inflamed boob heals no walking and certainly no running for me. I'm giving myself two weeks to recovery from rads then I need to get serious with my exercising again.
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Betsy..I think a sims is short for simulation..but Lena does need to tell us MORE about exactly what she does with them...or it may be TMI (too much information!) Love ya, Lena,, just messing with you...Actually, Lena, when I read your posts...I think..this girl has a very interesting LIFE...you talk about simple thngs..like getting groceries...which we all do..but you seem to do with a hell of alot more flair! I just go and get them, pay for them bring them home and eat them..or whatever..but you make it seem like an EXCITING event..I work for a grocery chain of 13 grocery stores in Ohio and I think we may need you to make shopping more exciting! Maybe you should come to Ohio for an interview!
Betsy..you will love your cell phone..I can't go anywhere without it...I just started texting and my bill went over $1.60 and you would of thought the world was ending. My dh said he would take my texting away! Well, I took care of that!
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Next week I'm going back to work ... for the first time since the beginning of February. I'll start with just 2 days a week and if that works I'll up it to 3 days a week until the end of Dec and will go for full time in January. I've worked out a plan with my employer so that I'll be in a minimal stress situation .... there is still someone going to "backfill" for me during this transition. It seems like a good plan but I'm nervous about going back. I hope I can handle it. I'm also concerned about how people will treat me &/or respond to me. How are the rest of you doing? Any advice?
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Helen - I think that people take their cues from you. If you seem tentative or unsure, they will pick up on that. My advice would be to have one or two 'safe' people you can share your insecurities and concerns with (possibly family members or someone in HR or mgmt at work who will keep your confidence) and then put on your biggest smile and bravest front and hold your head up and go in smiling. I would say "I'm doing great - it's great to be back" to anyone who asks and then change the subject. I met a woman at chemo who is stage IV and works in banking (large institution) the other day and she was telling me her trick for handling the people who come at her with faces full of concern. She says she just diverts the conversation away from herself and has a question ready to ask about them - i.e. "I'm doing fine, thanks - how's that daughter of yours who just started college?" She says it is much easier when you are not the center of attention.
I work at home and deal with clients/suppliers on the phone. I didnt' tell a lot of clients about the bc and it is nice to just deal with them same as always and not be treated differently.
Just my two cents. Hope it helps. AND GOOD LUCK!!! -
Thanks for the good advice, Amy.
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Helen..ditto what Amy said..your co-workers will be curious about you and what is going on with you..that is just normal..and they do care..at least most of them do anyway...Like Amy said..when they ask you say fine..and then divert them to something else...be super professional if that would work the best for you...
And good luck going back to your job! Back to normal..whatever that may be..you will feel better doing this.
I continued working during chemo and radation..just because I could...I would come back from chemo for an hour or two and people..especially my boss would just stare at me...I think I worked...not really sure..can't really remember some of those time PFC....
I am also a real estate agent (liscense in escrow for the time being)..anyway..my dad is too and he was telling me about a client that screwed him..a personal friend no less...and all my real estate knowledge came back to me..I haven't thought about this stuff for a long time...He messed up by not having this "friend" sign an exclusive contract with him as his agent...I haven't thought of this for so long..and it is still there...I almost did a cartwheel!
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OK, I'm all behind again, I take a few days off and look what happens I'm pedaling like crazy to catch up. You guys are so dang busy!!
LENA - I am on tamox but just started it a week ago. I wanted to wait until after my beach trip and then I had to start the bone trial drug first and my onc wanted 2 weeks between to be able to check for side effects. So far so good but only a week on it!
TITAN - WOOHOO for you on the beach trip, be sure to wave at me when you drive by;o) You better get those earrings for your beach trip - glam it up girlfriend! My kids laugh because they say I text my friends more than they text theirs, trust me that would be impossible. I love my cell phone! Great feeling to know you've still got "IT", life is just like riding a bike, we all just got off for a while, but we're getting back on with a tougher spirit - Watch out Lance Armstrong here we come!!!
JUDY - Gotta love those kiddos! They are the strength that gets us though. My both have been such a part of my recovery.
ALAINA - Where are you??? How are you???
BETSY - Such good news about your sister, so glad to hear it. I know what you mean about Chewie, I look like one of those little guys (Ewoks - spelling) as I'm only 5' tall. This post chemo body hair thing is making me crazy. Had to take the creme hair remover to my face last week, looked in the magnifying mirror and scared myself, anyone else getting this. Some ladies I know have had it and says that it does go away, but no way in he** am I waiting around for that. If I don't catch it now I may have to join the circus!LOL You go girl with that new phone!!
CHELEV - OOOOHHH You do look gorgeous! I'm so happy that you had that oppurtunity, something you'll always remember, regardless of the makeup artist lol!
AMY - Love that pic of you and your daughter! I can't help with the posting pic stuff I made my hubby do it as I'm still in 1st grade when it comes to that.
HELEN - Give yourself credit for how strong you are! You will do great back at work, just take it slow and maybe your coworkers will all surprise you as to how they react and there will be nothing to worry about. How'd the Nordic walking go???
OK ladies, remember if you're watching the Redskins game tomorrow - look for me!! I'm so looking forward to the day with my son.
Love to ya all! TA TA FOR NOW!! (Trivia question: who says that???) Hugs, Dawn
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Hiya sisters -- hope you are all doing OK. I'm continuing to pull out of "stomach attack" mode, I haven't caught any more colds, and those horrible cramps haven't returned either, so maybe I'll soon be back on track with actually recovering from the chemo. :-)
Titan -- You're going to a BEACH -- in OCTOBER? WOW! You and your hubby must like to be cold -- either that or I ought to get on my weather website and find out what the weather is actually like in Myrtle Beach, NC this time of year! Whoa! I'm with you on the "not ready to be topless" thing, though -- and NOTHING beats romantic alone-time with one's sweetie either. :-) Heh heh heh, if that beach has a boardwalk, make sure you two go underneath it late at night -- but bring a blanket so you don't end up with sand in undesirable places. >:-) Ummmmmm...it's not so much that my life is exciting (not anymore at least -- I used to be flamboyantly weird in my youth, but I've gotten comparatively boring in my old age). I only give the impression of having an interesting life because even though I've toned down, I'm (a) still more than a little bit offbeat and (b) good at writing again now that the chemo brain has significantly subsided (I do still have some of that which is evidenced by occasional difficulty keeping focused with Sims object hacking and my computer upgrade projects). Oh, and about my sims -- all the gory details to follow near the end of this post (you're on the right track, though). Just wanna say hi/how are ya and comment to some other girls' posts first.
Judy -- There's nothing wrong with having a life outside of the the Internet, or needing your rest. The worst of the chemo fatigue has lifted for me, but I do still tire more easily than I did prior to chemo (plus my anti-migraine meds, which I had to go back on a week and a half after starting Tamoxifen, also make me a little tired), so I know where that's at too. So, IMO you should just go and enjoy yourself as much as you can, and get plenty of rest when you need it. We'll still be here when you're up to posting.
Betsy -- OUCH about the rads and burning boob! When do you finish? I guess there's no cream or anything you can put on it to ease the pain? :-( Oh, and guess what -- I don't have a cell phone, and I don't plan on EVER getting one either. I HATE the f***ing things. There's no way in hell I'd want for anybody to be able to call me 24/7, and since I'm not a doctor or EMT, there's no reason for it. I wish I could shoot the people who use them while DRIVING, and, while it doesn't make me homicidal, I do get really annoyed when I hear the stupid ring tones all the time or I'm standing in lines at the supermarket, bank or pharmacy hearing other people's conversations which should IMO be private.
Helen -- Kudos to you for your bravery about going back to work. It's good to hear you have a sympathetic employer and coworker willing to make those kinds of adjustments for you. I don't know if my previous employer would have done that for me (presuming they hadn't had to lay me off due to the tanked economy: how do you like this one, girls -- I get laid off from my job, start looking for work, two months go by during which time I don't find a new job but I do end up with Stage IV breast cancer!). So now if I had to or wanted to work I'd have to go look for a new job.
Amy -- The Stage IV woman you met at chemo is obviously way stronger than I ever was. I couldn't have handled a position like hers without cracking even before I had cancer! Plus I never had much in the way of people skills. Oh, I know how to be polite and courteous, but that's as far as it goes, and that's a far cry from being able to "handle" people! Not being a "people-person," I always followed my instincts and avoided "people" types of jobs and situations as best I could! And I'm not so good at managing stress either (I stress out very easily). I'd just fall apart at this point if I hadn't been deemed eligible for SS Disability and had to go job-hunting again, then if I actually got a job (who in hell would hire a Stage IV cancer patient for a full time position anyway?! Especially one who was partially paralyzed from a previous stroke too?)...and then to have to be reliable and "smart on demand" (as well as polite and courteous) 40 hours a week! No can do anymore! Maybe in time, if I have enough of it to reach that point, I could see possibly being interested in working part time, but full time scares the heck out of me now (unless, maybe, I can telecommute/work from home).
Dawn -- My onc put me on the Tamoxifen 1 week PFC (I didn't go on any trials like you did with the bone trial), so by this point I've been on it 9 weeks. The first 5 days, the only thing I had was hot flashes, but I'd been getting those since around my second infusion of chemo, so I don't know if those hot flashes were still from chemo or the Tamoxifen -- hot flashes are a common Tamoxifen SE. I'm thinking now they were still from chemo, because while I still have hot flashes, the frequency and quality of them has changed in the last three weeks or so (they're not quite AS bad or as frequent as the ones I had while I was doing the chemo and for a time after). However, beginning with my 6th day on the Tamoxifen, I started getting migraines again. I had been migraine free, no longer needing my old anti-migraine meds, for three and a half YEARS prior to starting the Tamoxifen! Well, I had to go back on my anti-migraine meds -- I went with my old "3 strikes you're out" rule -- if I get three or more migraines within one week, it's time to call a doctor. I had migraines on days 6, 7 and 8 after starting Tamoxifen (one each day) -- so the morning of Day 9 I called my oncologist. He was on vacation, but his fill-in physician (also an oncologist) was able to help me. When the first migraine hit, I'd read online that "change in migraine pattern" was a possible SE of Tamoxifen in patients who had prior migraine history, so that's why I wanted to alert my oncologist to the situation, not to mention make the migraines stop! Well, I wound up recounting my full prior history of migraine and my migraine induced stroke of 1993 to the fill-in physician. I remembered the old meds and even had the dosage in an old archived email (which he was kind enough to give me the time to look up), so I gave him that info and he called the script into my pharmacy -- so I went back on the meds and I'm not having any more migraines while continuing to take my Tamoxifen. At my first oncologist appointment after that, I updated him on the situation, so he knows about it now too. Ummmm, no, I'm not growing any hair on my face. I have severe dry skin on my face and neck though.
All righty then -- it's time to tell you all about sims! :-D And no, the upcoming descriptions are NOT going to be COMPLETELY dripping with meticulously detailed and personal information concerning my sex life:
In 1999 or 2000, this computer game called The Sims came out. Being socially retarded and willfully entertainment challenged, plus, in those days, my opinion that playing computer games was a ridiculous and colossally stupid waste of time for anybody who wasn't a child or teenager (this based on my ex-husband's addiction to shoot-em-up computer games; the only kind of computer games I knew of at the time -- those were the only kind he bought and The Sims hadn't come out yet until we were separated), I was totally unaware of this game, while, unbeknownst to me at the time while I was obliviously putting in 80 hour weeks between working full time days and going to college at night (that was my life 1991-2001 with only four months off while on disability for the stroke, so now you see why I'm not a fighter when it comes to the breast cancer -- I am STILL burnt out from that and have nothing left to fight with), The Sims became the biggest selling computer game of all time. I don't know if it still holds that distinction, but i found out it did for years, and "upgraded" versions of the game -- Sims 2 and Sims 3 -- were also released. Sims 2 became extremely popular -- dunno yet about Sims 3 since it only just came out this year. But anyhoo -- in 2006, yes, *2006* -- not only did I finally discover that The Sims existed, but in reading its description, it was the first computer game I'd ever even heard of that actually INTERESTED me! The Sims is not a shoot-em-up of any kind. It's a people/life simulation game! As in, you-the-Player create little people, build furnish and decorate houses for them, landscape and decorate their yards, and run their little lives, or, watch the havoc they'll wreak when you let them do what they want. The little people are the sims (though I fondly call them my "simmies" at times).
At the time I discovered The Sims (via a thread in the writers' forum I used to be active at), the original game (Sims 1) was already "done" -- you could still buy it but Maxis/EA wasn't making any more expansion packs for it, and Sims 2 was out and very popular, up to its third (I think) expansion pack. Thing was, my computer wasn't nearly hot enough to run it (it didn't come close to meeting even bare minimum system requirements), and although I wanted to try the game, there was just no way in hell I was going to buy a brand new computer just to play a game! It turned out that as substandard as my computer was for Sims 2, it actually exceeded the requirements for Sims 1, the original game -- so I bought the original game from Amazon.com.....and got instantly HOOKED!!!!!
Now like I said, I learned about The Sims from my writers' forum, so my impetus to look into it and try it myself was the idea that I could make the world of my sci fi fantasy series "come alive" before my eyes (plus do the same for some other more contemporary story characters I had from another story). I succeeded -- though it took me two and a half years and a lot of doing. The game doesn't come with anything theme-appropriate, and none of the skins (the component of the game which you use to make actual sims) it comes with look even remotely like any of my fictional characters) -- so I was for a time completely "stuck" in contemporary suburbia. How I got addicted to the game when this was the case, I dunno, but I did (and I still have and play my original contemporary human simmies, including my very first ones). Around two months into the addiction, I discovered the online Sims community and learned that it's possible to customize the game -- and I just totally took off from there. I started out as a "download junkie" (downloading custom objects and skins made by players who'd "been around" awhile), which allowed me to build up my non-human, non-suburban theme -- the world of my original sci fi fantasy people -- all the sims in my theme game are characters from my stories, and I've recreated their desert environment and culture/lifestyle (plus I also got to individualize some of my contemporary human sims so they could be really eccentric LOL), but I ran into a lot of technical problems I had to learn to overcome (being on Mac made it worse actually: most Simmers are on PC, so that's what nearly all the "tool programs" need), but I did. Learning to fix my broken game and then prevent problems led me into object hacking. At first I was simply tweaking my downloads to fine tune them for my game, but I also started occasionally making hacked objects. Which brings us to --
What this custom content stuff actually is: Yeah, player-made objects and skins. Objects are the furniture and appliances for the sim houses (beds, tables, chairs, refrigerators, stoves, toilets, showers/tubs, patio stuff, swimming pools and so on), plus indoor and outdoor decoratives (paintings, sculptures, rugs, tapestries, vases, trees, plants, statues, fountains, hedges, topiaries, rocks, and for my theme game I found cacti and other desert flora!). Additionally there are objects related to the expansion packs for going on vacations, nights out on the town, sims growing their own food, becoming performers or magicians, and hacking Simmers who got into the game guts to make it possible for sims to run schools and businesses from their homes. Skins -- these are the faces and bodies (clothed) which make up a sim. If you want really unique or exotic sims, skin downloading is crucially important. My Skins folder in the theme game is currently at 2,624 files (and I have a couple hundred new ones to test and install) but there are other players with 10,000 or more! Anyway, I evolved into a minor object hacker and (sheesh what timing! right before I was about to start chemo), one of the Sims Hacking Goddesses I knew from my most frequented Sims forum invited me to join her site as a creator-member. I'm not that prolific (because I'm STILL so addicted to PLAYING) but occasionally I come out with stuff that wows other Simmers.
And lastly, before I finish my Sims treatise, well, this wouldn't be a "Real Lena Post" if I didn't even MENTION sex now, would it? It's true, I don't have to get into serious TMI and I won't, but I should indeed mention that it's POSSIBLE to add sex customization to The Sims, which of course I've done. I have the "nude patch" which eliminates the blur on adult sims when they get naked, and I also have anatomically correct default nude skins and various "adult objects" (including some I made: I hacked my downloaded futons so they'd function as adult love beds for my theme game). So yes, all my sims have sex, and with astonishing variety, too. And for this post's crowning tale of semi-wildness -- Sims Spark RL Sexcapades! This involves something -- never mind exactly what, since to specify it would be TMI -- my Pack Rat told me of something (the "never mind what!") he thought it would be fun for US to be doing (two and a half years prior to my discovering The Sims at all) and I agreed, but he always seemed too busy to get what we needed to try this. Time passed, I became a Simoholic, and then I discovered a "dirty download" which allows sims to do exactly what my Pack Rat had wanted US to do IRL, which he'd periodically occasionally mention. After I got this download, the first time he was here I showed it to him using the sims of him and me to demonstrate, saying, "Look what our sims beat us to!" He busted out laughing, but the next time I went up to HIS house, there it was for real, and yes, it was fun! And we still occasionally joke about how our sims beat us to it -- when I'm playing "our" sims, I don't hesitate to tell him they did "THAT" again, when they do.
Well, gotta go. In the parlance of a true Simmer, my hunger meter is in the red! Catchya next time.
~Lena.
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Ok..Lena girl, I just checked the weather for Myrtle Beach for the next 10 days..the highest degree is 84 and sunny..the lowest is 71 and sunny..not sure about under the boardwalk thing though...our room has a king size bed and a jacuzzi shower..right now..at age 50 I'm all for the comforts! last time my DH and I did anything like..many years ago..he ended up with mosquito bites...everywhere! ..I'm from Northest Ohio where it is pretty much either really cold..or really hot and humid...sometimes I really don't think we have spring or fall...since I'm through menopause..thanks to chemo..I pretty much HOT all the time anyway...we had our bedroom windows open one night and it was 39 degrees outside....and I'm still "flashing"...has anyone re'cd that e-mail where they show a naked women on a sled going down a ice encrusted hill? Well the title was how women deal with menopause..when I looked at that..I thought...what a concept! Maybe I will do that this winter...go truly toples and topless!
Thanks for the explanation of the sims...I maybe have to look it up..and join in.
Dawn..hope you had fun today! We were watching the Browns..the "almost" won..anyway both teams had on pink and there were some ladies on the sideless too..it must have been something throughout the whole NFL...it is Breast Cancer awareness month...which kind of freaks me out! I know that everyone means well but it seems like everywhere I look there is PINK...why pink? I would prefer a strong color..like purple..
Judy..hug your kids for me! I don't see mine much since they are away at school..my son was home for 24 hours...threw his clothes around..I washed them, hung out with his friends, then headed back to school....just takes a little adjustment..just being the DH and I...I like it..just different.
Helen...good luck at your job..and you GO GIRL! At first everyone will be attentive to you and then it will become the same ol, same ol...believe me...I'm treated now as just one of the group and I like it!
Alaina..where the heck are you? Did you get your ice cruncher?
Betsy..good luck this week finshing up with rads...Hope to hear abour your cartwheel!
Chelev..back to normal from your movie star status....glad you had fun in NYC...I want to go there sometime...I'm just from one of the "fly over states" (but I like it)...someone has to live here...but we manage to get out now and then.....
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Titan, I understand!!! We're the old people who migrate here in the winter state . . . so if you are looking for a beach in October, well, it was 93 degrees today!!!! Too flipping hot!! NYC is definitely something you should try to see - wait until it is fall or spring - it's either nice or terrible in summer and can be miserable in winter, but there are so many things to see and do and shop for!
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Hi all, just really enjoyed reading all your postings and thanks as always for your support!
We are doing ok, and actually this week, we are taking a short trip to NY for a few days with the kids - they have never been there so it is very exciting for all of us! It is a good feeling that I feel able to do it!
Hope you all have a good evening,
Hugs, Judy xxx
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Hi Ladies!
I'm rushing off to my Rads Simulation today! My new blender actually has an "Ice Crusher" button and it works just fine! I was a happy camper last night!
Will update more later today!
Hope everyone has a great week!
Alaina
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Hey all....I'm DONE WITH RADS TODAY. Yipee!!! Let the healing begin.....
Alaina, the simulation is longer than the actual rad treatment so don't panic about how long you are in the position. Good luck.
Betsy
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I finally finished chemo - I'm so happy to be done! Weekly Taxol seemed to take forever to end.The nurses gave me a Certificate of Courage that they all signed. Funny, I don't feel very courageous now. I keep reminding myself - Baby steps. Off to bed now, hoping the fatigue is not so bad tomorrow so I can catch up on posts.
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TSmith, contratulations on finishing chemo!!!!!
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