Jan 2008--Ain't it Great?
Comments
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I'm feeling a smile here, SIS Kimberly, because I know you're hanging here with me.
Hair update? I've been shaving for a few weeks now. And my nether region has the best hair on my body, but it's stick straight!!!! I have some new lashes on my lower eyelids, but only in the corner next to my nose, the rest is still bare. My upper lashes, which never completely lost it, have shown no new growth. Arm hair is almost back to normal--although it was one of the areas that never went completely naked. Head hair is coming in, but it still has little to no color, hence my comments that I need to get that wash out color applied again.
Okay, I must go to bed. I'm pretty much fried.
D1
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Julie- Sounds like things are just moving along after your surgery. Awesome!!!!
I am so hiring her. My first big clean will be the 11th. I'll have to find somewhere to go so they don't have to work around me.
D1- Man, scored $20 bucks in the parking garage, eh? Since you had to pay this time, it came in handy. And you are so right about deserving that kind of 'gift' after all the lymphodema and arm issues.
That is so life affirming to have a call like the one you had from your old friend. It is like when a student comes back and says thanks to a teacher. Priceless validation.
Good night all, SIS Kimberly
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Hi Js,
We are home from Duke. The visit went well, although the results weren't what we expected. We went thinking dh would be a candidate for gammaknife or a similar radiosurgery procedure. He isn't. He has four areas of concern... four new tumors... two little ones and two ill-defined and not-so-small... YIKES! Given that these tumors have "fingers" that aren't always visible, he needs chemotherapy much more than a radiosurgery.
His doc recommended that he enroll in a clinical trial. The one he suggested is a Phase I, which I'm not so thrilled about (those are usually "wonder if this might work" studies--not the best thing when you have an aggressive, fast-growing brain tumor). However, after some investigation I found that this trial definitely has merit. I've found at least a dozen similar studies with the same drugs that have shown promising results with GBM.
We are scheduled to return to Duke next Monday to go over the protocol and enroll in the study (or decline and explore other options). We expect to be there several days if he chooses to enroll to get started on the drugs. One good thing is that all three drugs in this study (Gleevec, RAD001, and Hydroxyurea) are oral meds, so we can do this at home with monthly trips to Duke.
The study provides two of the drugs free and we have to pay for the hydroxyurea plus all medical, lab, and radiology procedures. So, I'll need to check with our insurance to make sure they'll approve these costs.
Ed has a niece in Durham who is a research pharmacist and she was able to find loads of data on the drugs and gliomas for us to review.
Dh was really discouraged with the news that he has not 3 but 4 areas AND that nothing can be done surgically. It is very unnerving to know you have a bunch of deadly brain tumors in your head and no one can remove them for you. He's feeling a bit more positive today and I think he's ready to give this thing a go. It boosted his confidence to see on the news that Duke was the center chosen by Ted Kennedy, since they have the same type of tumor.
I've read the posts, but don't have a lot of time to send wishes out tonight.
Carol- I'm happy that your counts were up and things are moving forward (the end is in sight!). Happy belated anniversary!
LJ- terrific news on your path report!!
Tina- I'm so sorry to read about Cleo. I love my animals and still remember the death of each one of my furry friends over the years. Hope you can take comfort from Penny!
Kimberly- welcome back. Your trip sounds heavenly!
D1- so you have the PITS instead of the PITA... our SE queen reigns supreme! Hope the PT gets that shoulder back in shape. I can feel some tightness in my armpit area since last week--gotta be from the rads and I'm with CathyCA--I'll bet $$ that your shoulder prob. stems from rads as well.
Dana- love your spirit, girl! God bless you as you finish up your schooling and take care of Bandit.
Jenn and Julie- love reading about the growing hair among our Jewels. Mine is coming in dark brown with quite a few shiny white/silver hairs. I'd been highlighting for several years so I have no idea how much gray I have! It is still very short and my scalp isn't covered yet, but I'm going topless more often now that it is getting warm. Thankfully, my kids don't seem to mind...
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My goodness, I can't keep up with you all tonight, did read the latest, will be closing my eyes shortly (making up for a last nights restless sleep), as always my fellow Gems will be in my thoughts ... be back tomorrow.
Oops, forgot to give Wendy a good send off to chemotiniville tomorrow, looks like your in the home stretch gal ... go get um!
Carol
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Good morning Jewels! I actually have a day off without any appointments or meetings. It's a good thing, too, because I have some lovely GI illness that started yesterday and is pretty bad today. Let's just say that I took a Zofran earlier-and it's from the RX I filled for chemo but never had to use then! And I added an Imodium to it. Yuk! Never a dull moment for me.
Yesterday I had my tattooing done. Was very easy. No pain at all-she numbs the area first with lidocaine injections just in case-but I barely felt that going in. She draws a circle the same size as the other nip-she measured. Picks out a close color dye-I don't think a PS is as good as a tattoo artist however she just chose one shade and I hear tattoo artists will mix colors to match better. And then she tattoos. It all took about 15 minutes. No problem! It looked pretty good right after she was done-just "wet". I have to keep an abx ointment on it for a week, but I can shower today. Last night before bed I changed the gauze and it looked kinda gross then-irritated and kinda bloody like it's trying to scab. Eeeew! I put some new ointment on and covered it up. I haven't looked yet today, but I have other issues more pressing at the moment (hoping I can actually sit here and type before running off to the potty again)! She said it will look really dark at first, and then the pigment fades as the scab is shed off. (like a snake??). I see her again in a month. So I had theses great ideas of getting a "real" tattoo someday before this adventure-not so sure I want to do that now. I'm not into looking at wet wounds. For a nurse, I am a total wuss when it comes to my body.
Dd's rehearsals are going well. Monday was stage rehearsal for ballet-she did great. Made me real proud. One of the older girls' (who I've seen dance before and is AWESOME) moms came up to me and commented on dd and said she reminds her of her daughter when she was that age. I was just glowing for her. Honestly, it doesn't matter to me what she does-I just want her to have fun right now at this age-but it's nice when your kid is really good at something.
Gymnastics was last night. I think she's much more graceful dancing actually. She needs to be able to move I think, and gymnastics requires her to slow down and be more precise-not her forte right now. But she did well and is having fun learning cartwheels and doing her floor and beam routines... that's all that matters. Next week is both shows.
Thinking of you gals again yesty... I met one of my e-mail BC friends in person! She is a doctor that is doing her fellowship in our NICU (where I primarily work). I was connected to her from one of the docs in my "old" office that she's also friends with. She had stage 2 I think, and has a young daughter (under age 2). She had a double mast. with implants (just did her exchange last month). We've been corresponding through e-mail since probably about October last year. She started working again this week, and we met up in the NICU yesty. So cool. I'm a little father along than her-- she still has rads to do. She looks great; it was so nice to finally meet her face to face. People probably thought we were weird... "Kathy?" "Kirstie?"-(((big hugs!!))) in the middle of the unit!!
So on to the site to see what I've got to catch up on...
What a marathon my post is after reading and responding... here goes!
D1: Reading your posts about your dd... makes me think of all the years of shuttling kids to and fro from their activities that I have ahead. And my ds hasn't even started doing anything yet; it's all dd right now! Yet another reason to keep my dh around (haha, I wouldn't trade him for the world!)-another chauffeur.
Also got a laugh out of your post about flow-a-holics! I think we are for sure. I got mine planted and am still trying to figure out where I could put more. Even got two outdoor hangers so I could put some baskets out that I found. And I just about peed reading your comment to Carol about the dog turds! You are a riot-I love reading your posts!
Also liked reading about your "bed head"-I'm eagerly awaiting the day mine does more than stick straight up. I was blonde before (for real), and mine's coming in brown, but no gray at least. Will def need color once I get some length.
I hope your legu can help with your shoulder.
Good luck with the painter's. Another to-do for me. Our walls are still white, and we've been here for 3 years now.
LJ: You've inspired me to at least ditch my do-rags. I've been topless at home all the time now (even outside), and when I go out now on the weekends or evenings I just put on a ballcap. I still am not brave enough to stop wearing the wig at work. Baby steps for me...
Hoping you can get rid of that drain soon-there's true freedom!
Yahoo!!! So excited after reading your post about the path report! That is just the best news. It is such a triumph, I think I'd frame that report too!
Carol: You are also my inspiration to get out and make contact with others with BC. I like being involved but usually shy away from outwardly seeking to do so. Anyway, I've taken my first step to becoming an official "peer mentor" for the DE Breast Cancer Coalition. Just waiting for the next class (that cracks me up a little, like I need a class to be helpful and friendly-should be interesting to see what it talks about). And I've entered my name to be considered to model for one of their big functions this fall-they sent me an application since I'm a survivor. I laughed, was going to toss it, and then thought "What the hell? Why not?". So I may get to shake the new girls in a show someday! Hee hee.
Happy Belated Anniversary! Bet that year seemed to go real fast, huh? I highly doubt your dh would trade you for anything. Just "knowing" you here, you're a sweet, caring person, and I'm sure he's so happy to have you as his wife. And about the "celebration"-there's plenty of time for that later. I'm sure he'll wait (men will ALWAYS wait eagerly for that).
Cracked up reading your description of the evening! I can just see you typing away while he's scooping doggie poo! Now that's love!
And so glad to read your tx did happen yesty....show off!!... doubling your WBCs!!! Great news.
I really have to schedule a massage some day... never had one, and they sound relaxing. Add that on my to-do list for the summer...
Maz: You must have some hearty hair follicles girl! Mine all seemed to jump ship eventually.
Joan: (my mom's name BTW) another CA traveler. I get the feeling I should go too just to see what I'm missing out there.
Julie: Glad to hear about your awesome weekend. And so nice fills are going well-you deserve it after your chemo course! One thing to consider... I did small weekly fills (30-50cc every 5-7 days)-very tolerable. Maybe your PS could do small, frequent fills rather than larger ones spread out more? It may not hurt as much compared to a big amount going in at one time.
Paula: Thinking of you and dh in NC. Duke is a great facility; I'm sure you're getting excellent care.
Just read with mixed emotions about your report from Duke. Sorry you did not get the news you'd hoped for. I have heard very good things about Gleevac though. Best of luck to you both in the decisions you have coming up regarding tx.
Dana: Sorry to hear the bad news about Bandit. You just can't seem to get a break, and I feel for you. I hope God will give you strength though this ordeal also. It's just not right to have to watch your pet go through cancer, too.
And you are always thinking of others. I'm sure your doc and nurses will love anything you bring them--- D1's right, cookies are an easy gift, too.
Tina: Read your post with sadness. So sorry about Cleo. My oldest kitty is 14. She's still spunky, but I know her time is limited b/c of her age. I always worry if I see she hasn't eaten right away. I hope you can focus on your memories of Cleo when she was younger and feistier. ((Big Hug))
Had to chuckle after reading your next post with Penny's "thoughts". Dontcha wonder what the other really does think? That was priceless!
Yes, overall, I'd say I am pleased with my recon results. I can tell it's not like the other, but when I'm dressed (or even in a swim suit), others can't tell it's "fake". It is definitely smaller than the "real one", but again, probably only I notice this as most women have a smaller one (funny, this used to be my "bigger" boob!). I DO love the fact that they are bigger and fuller (and perkier) now with the implants-no more "golf balls in the tube socks" look for me!
Kimberly: Welcome back! I'll read on, I'm sure you've posted some details later...
Wow! I just read it. What an adventure. Thanks for sharing. And I do think the wolf is so ironic--- that's true karma, lady.
Good luck with the cleaning service. I'm trying to decide if we have enough moolah to get some help once or twice a month. I don't want to waste my time on the weekends cleaning anymore, plus I hate it. I'd rather be doing stuff with my family than chasing dust dinosaurs! I found an ad here for free services if you're a patient doing BC txs. Maybe I could get a discount since I'm not that far out from my txs. (Channeling D1 right now).
Ahhh, you did it again... that story about the dog brought tears to my eyes. Thanks for sharing it.
Jenn51: I am so glad I could help you a little with just my words. It's a harsh reality what we've been through, huh? (((HUG)) to you from me.
Enjoy that pizza! I got one Monday night-started the week off without cooking-hmmm, nice change! I'll take care of the extra calories later that accumulated on my hips and butt from it.
Cathy-CA: Are boysenberries like blueberries? I've actually never had one-must be a West Coast fruit as we don't even carry them here in the stores. I remember, like Tina, picking raspberries and blackberries. We used to grow them all the time when I was little. Plus my mom had a huge veggie garden, and we'd eat snap peas and carrots (after washing them of course) right from it.
OK, I made it. Gotta go see if I can eat something. The Zofran seems to have calmed my belly down for now. I'll try to check in later.
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Egads that was long! Sorry! See what happens when you girls are so chatty?
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WoooHooo! SIS Kimberly's getting a "lady to come in." (That's what we called our cleaning ladies the few times we had them when I was a kid.) I hope she cleans acceptably well. We have ladies who come in 2x a month here and I swear, I clean before they arrive and then clean again afterwards. But, they usually do a bang up job at the dusting (I hate dusting) and cleaning the toilets. The rest of it I, in my anal retentive fashion, clean myself a few times between their visits. When the painter came in today I told him how excited I was to be getting this done so I can clean the rooms well and he said my house is already cleaner than most places he's been. And here I'm thinking it's filthy. I'll still clean it to my standard when they're done! It'll be brand new!!! (Gosh, Kimberly, I hope I don't repaint the whole house-it's really expensive to have it done and that $20 from the parking garage won't even make a dent!)
Oh Paula, I'm so sorry you and dh got some disappointing news. I know what you mean about the Phase I trials, they kinda scare me, too. But I doubt the docs at Duke would take a chance on something they didn't think would help dh. They have such a great reputation (as we've acknowledged, even Ted Kennedy traveled there), and they don't want to do anything to jeopardize that. Between your research, the help of your niece, and your docs, I'm sure you will make the right decision for dh. I'm sorry you guys are having to deal with this, but I have every confidence that you will do the right thing.
KathyL-so good to hear from you. I know you've been busy, but I've really missed your regularly scheduled insights. You'll get a kick out of this, I'm having the walls painted, but I'm painting them, you guessed it-white! My dh is such a Scandinavian that I don't get choices in this regard. I did get him to agree to painting the punchout in our breakfast nook yellow-that's progress. I remember 5 years ago when we painted our bedroom and the girls teased us about agonizing over the white paint chips. (I managed to get that room done in a light taupe!) I just try to liven things up with throw pillows and such.
I'm glad to hear you're signing up to give back to the cancer community. I wish I could be there to see you shake the girls!!!! Speaking of the girls, it sounds like the nipple tat wasn't too bad. My college girl has several tattoos and it only takes a couple of days for things to heal up. One of her tats is a solid star, so it's probably a lot like your nipple. It did scab over a bit, but healed really quickly. Just keep the anti-bacterial on it and keep it clean till it scabs and you should be good. (Who am I, giving medical advice to our resident med guru????)
Hey, and channel away if you get free stuff out of it!!!
I want to get back to SIS Kimberly's comment about her doc not being happy with her rad/HT choice. You know, this is all so difficult for all of us. We're trying to take in the information and make the best decisions we can for ourselves. And there's the key-we're deciding for OURSELVES. Each of us is making choices that we can live with, not for anyone else. You have every right to make the choice that's best for you. Don't let your doctors make you feel bad because you're choosing a path different from the one they want for you. I know I've made decisions contrary to my doc's advice a couple of times on this journey and the key for me has been to be at peace with whatever I decide. So if you're at peace, Kimberly, move on and don't look back.
Okay, off the soapbox. Gonna go check on my painters.
D1
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Sneaking a quick peak from work, love all the talk about painting and such, beats the posts of a few months ago, ya think?... we've come a long ways baby!!!
Back afterwork ... Carol
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Paula, I watched a PBS show called "Living with Cancer" several weeks ago. They mentioned how very successful Gleevec is with certain cancers. I am very hopeful that this Phase I trial that your husband may participate in, may prove yet another type of cancer that is susceptible to Gleevec.
Thanks for all the congrats ladies. Those of us who are estrogen-negative HER2-positive know how aggressive our cancers can be. This is the first moment I've actually felt like there is a chance I could beat this thing.
KathyL, the hair stops standing up on the sides first. Then the top starts to grow in a distinct direction. But not all the same direction. It's goofy. On the left side of the top of my head, it comes forward ... where at the front it stands straight up ... toward the middle and right of the top of the head it leans toward the right. This creates that characteristic "swirl" in the back at the top.
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Hi Jewels,
I'm going to start a post but not sure if I'll have time to finish. Another round of severe t-storms is headed our way. I had a major computer meltdown one time because I left it on during a storm. We just had a tiny glitch in the power but I nearly lost everything. Couldn't get to the Windows log on screen. It took 3 days & hours on the phone with the MS tech people to get to where I could recover my data. The worse was the 1000s of pix I had stored there. So, my ‘puter doesn't come on during a storm.
Tina, my granddaddy grew raspberries. They lived in the So. part of Indiana & if we weren't coming down while the berries were ‘on' they would drive up bringing me quart jars full. And always a smaller jar for me to eat all at once. Many times I made myself sick eating straight from the garden; strawberries, cherry tomatos & the raspberries. Happy memories.
Kimberly, I absolutely love your dog story.
D1, Beets YUCK, YUCK & DOUBLE YUCK. I'm with Julie on this one. Cool on the $20. I would have been excited too. Luckily our hosp. garage doesn't charge to park & the cancer center is in an indus. Park type area with parking lots, again no charge. Don't know if I could afford gas & parking.
I do envy you your painters. I have to drive past some really fancy houses on my way to the clinic. I was thinking today that I don't want a house like that, I like the house we are in. I just wish I could have a few things done around here. Painting would be at the top of the list. I painted our bathroom last year & hung wp border. But there are still a few touch ups & detailing I need to finish. I'm so bad at not finishing what I start. I would love to have someone come in & do it all in one swoop.
Paula, whether it's good news or bad I always think it's better to know what you are up against. I'm glad you have more knowledge on your dh's condition. I too would be very frustrated that they couldn't operate but this may turn out better. I won't quit praying for you & him.
Going topless was part of my reclaiming my life after chemo. We all know how well part of that turned out, couldn't work the way I planned, but I stayed topless. This is the me that I am now. Take it or leave it! Of course I don't have to worry about children or their feelings but I have looked at my balditude as my badge of courage throughout this whole ordeal.
LJ, I know what you mean about all the directions the hair grown back in. Either I've been parting my hair on the wrong side for 57 years or my part is now on the different side. There seems to be no rhyme nor reason to the direction it going. This will be really interesting when it gets a little longer.
KathyL, sorry to hear about your tummy distress. I hope all is better as you read this. The tattoo process sounds interesting. I guess I really never thought much about that part before. I hope I don't ever have too. Just had a lumpectomy & it if this comes back there won't be much to remove without taking it all.
Dd's dancing & gymnastics sound like so much fun. I really miss those days with my boys. It passes so quickly, savor every moment you have.
Has anyone had any problems with restless legs? For over 40 years I have occational bouts with the "creepy-crawly" legs when I went to bed. I would get up & find a different place to sleep, the couch, the recliner etc & usually go right to sleep. As I got older it would happen as little more often, maybe 4-5 times a month. But since I started chemo it has really escalated. Now I'm not just creepy, but my legs are flailing all over the place. Wakes me up about every 15-20 min. That's not a good nights sleep. 2 nights ago the longest I slept at any point was 2 hrs. I know there are Rxs out there but I've had enough medicine. Has anyone heard of any rub, exercise, herb.....anything that might help. They put a large rubber band around my feet during rads. I'm about to ask for one to tie up my feet when I go to bed.
Well, looks like I beat the storms. They went south this time. But I have a few things to get done so better go while I still have the energy. Once again, thanks to everyone for being there and for posting so I have something to answer.
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Hello Ladies,
Just in case anybody is missing that great feeling of needing a hit of Miralax, I'm taking up the slack in that department. Yep, it's the usually 48 hour after infusion crummy tummy for me. I'm so glad that my work day is over and I have absolutely nothing planned for the evening except catching up with my SIS friends, and watching a few episodes of Ellen I have recorded.
Kathy, Well I guess I spoke to soon, forgot about reading your post earlier today, you top me with needing Zofran (which I took this morning too), and an Immodium on top of that. Hope your GI distress passes quickly (maybe that's not the best choice of words!!!)
So tell me when do those lidocaine injections not hurt? From my ugly recollection of months past, getting that needle in my boob hurt like heck. Sounds like your new nip is one step closer to being a done deal.
Sounds like a great reunion to meet up with Kirstie at work, I bet the stories we're bubbling out of you both.
I'll be interested to hear what you learn as to being a peer mentor. I'm thinking once this is said and done and I have a little time to reflect I may check into the Reach to Recovery Program. My thought is if you can help just one person with just one bump in the road its all good.
Thanks for the nice words (as of late I was wondering who you we're talking about). I seem to be a bit more owly than I would care to admit. Hoping that too shall pass over time. I think its just this "long haul" (my trucker talk) to the finish line that's got my knickers in a knot. I'm ready for a "cation"!!! It is a rather catchy phrase, ya think?
Tina, so you've got the rain too, hopefully by today its passed by at your place. It poured yesterday, and today its just darn right ugly, with more rain expected tomorrow and Friday. I'm thinking the Harleys need to go back into storage, that would bring out the sun right?
So is Penny missing the "bitch"? I swear our two dogs would be pretty lost without each other.
Kimberly, being the dog lover's we are, I really got a good tug at the heartstrings with your story. Leave it to you to bring another feel good moment to share.
So after reading your e-mail posting, I get it now, you do have your taste buds back ... a big WHOOO HOOOO for that. Time to make up for some lost time, something a little better than chips!!!
So today is pre-op for you, hope your exchange surgery goes without a hitch tomorrow, and a quick recovery is in the cards. You already have had your share of coconut problems!
Cathy, mentioning your lemons, that's definitely one of the coolest things when we go to AZ, picking grapefruit and lemons right from the tree. I swear their lemons are the size of grapefruit, and so great tasting.
Jennifer, glad that your trying to get a little walking in ... I'm with you tonight, its just to cruddy outside to even consider it. I thought it would be good for my gut tonight, instead I think I'll pass on the exercise and go for a bland dinner and hit the hay really early. If I'm sleeping, I won't know that my tummy is yucky.
Its great to see you participating in the post once again, I always find atleast one thing and usually many more that bring a smile to my face on a daily basis. I really love it when I can crack up out loud!!!
Julie, I have to pipe in on the housecleaner being so worth it. Each time we've challenged our budget, the housekeeper is not going to be the first to go. I'll take the outside work anytime over scrubbing toilets and dusting.
Gotta like those hours for your dh, I would love to be able to eat before 7:00pm, but my dh has the commute from hell. I'm home by 3:15 and he typically is not home until 6 or later. Enjoy the extra time in your eves.
D1, freebies and finding money ... played the lotto lately?
So how's the house painting going? I'm assuming there will be a story of some sort to tell. I'm with Jennifer, a little envious of having painters come in. I did talk the dh into having the outside painted a couple years ago, I just knew that if we we're going to do it ourselves it would have taken forever, where they we're done in 3 days.
And gal, you have been making more than a positive impact on a whole group of us, trust me, we'll remember you twenty years from now and then some!!!
Paula, thanks for taking the time to update us on your dh's appt. I hope that your able to get some further ins coverage for his txts, one less thing to be concerned about. Sounds like you've been up to your eyeballs with your own research, as well as Ed's niece helping out. I know that your keeping that positive spirit in place. You are one mighty strong woman.
On a personal note, my dh just received word this afternoon that he has been accepted for a job that he applied for about 2 months ago. Its with the same company that he has worked for almost 20 years. It's a safety manager position within the tug boat company. The job will entail quite a bit of travel, (8 months ago I would not have been to keen on that happening), but today I am at ease with the thought of him being gone. Heck, we spent the first 5 plus years together with him being gone 15 days straight out of each month on a tug. Must say, back in the day it was a happy homecoming each month!!!
Feels like winter here tonight, I'll be snuggled under my quilt from Ginny in my old favorite spot (yep, the recliner is calling my name).
Be well my friends, Carol
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Hi JJ's!! Well, the dh and ds got our pool uncovered last night so we can start the opening process. It's the FILTHIEST it's ever been!!! Apparently our cover developed several holes over the winter and all kinds of fun things/stuff got in there! I worked on it a little today and it's already looking much better, but we won't be swimming in it for a while!
Our weather has been so yucky this week --- cloudy, stormy, windy, and HUMID! Ah, the joys of living in IL!
Kimberly - I'm SO glad you decided to hire the cleaners! I just love the day they come. I'm big on making sure things are "picked up" before they come b/c I don't want them to have to spend their time doing that. My son always says, "I don't understand why we have to clean for the cleaners to come!" I've tried to explain that they need to be able to SEE the floor to vacuum it!
Paula - I'm glad your trip went well and sorry you didn't get the news you had hoped for. My prayers are with you and your whole family. I'm glad dh is feeling better about things today. Sounds like LJ had some interesting info about Gleevac.
Kathy - what a bummer that you got a GI thing on one of your days off!! Hope you're feeling better by now, dear. Glad your tattooing went well! Didn't you have nipples put on recently?? I was under the impression that you either did one or the other --- the nipple surgery OR the tattooing. I didn't realize some do both. I think my ps only does a surgery for them - he doesn't do the tattooing too. Guess I'll learn more about that as I get closer to it. Sure sounds like dd keeps you hopping!!! Glad she's doing so well with her dancing - I'm sure you were very proud when the other mother talked to you about her. So cool you were able to meet your bc email pal!!
As for my fills, my ps is almost two hours from my house, so I believe he's trying to save us some driving time. I may go ahead and try it this week and see how it goes. I did really well last week, so I'm hoping I can tolerate the larger fill okay - we'll see! If not, guess I'll take out a loan so I can keep gas in my car for my frequent trips! Ha ha ha....
D1 - hope the painting went smoothly today! I'm jealous b/c I'm wanting to do so much redecorating in our house and it's all on hold for a while. We had the whole house painted when we moved in seven years ago, but our walls are "flat" and I want to put some kind of finish on them and repaint it all. Oh well, eventually it'll happen. For now, I can continue to dream.
Jenn - (my fellow beet hater!) - so glad the storms missed you this round! You deserved a break!! We had clouds and thunder most of the day, but very little rain this time - guess it all went around us. We had a terrible storm through the night - we woke up to our patio chairs and flower pots ALL over the yard this morning. I haven't had the same kind of leg problems you have, but I've definitely had a tougher time falling asleep since chemo ended. I've never been one to fall asleep easily, but now it's taking me almost two hours to finally fall asleep - and that's after reading for over an hour!
Carol - sorry to hear you've got the yucky tummy again after your tx. Hope you're having a restful evening! Congrats to the dh on his new position --- glad you're okay with the extra travel. Yes - the summer hours are very nice - when my dh actually abides by them. He's known as a "workaholic" and is often at school well past the summer day's end. He actually upgraded over 500 computers on their campus last summer, stayed till after dark every day, and didn't take one day of his vacation the entire summer! I think the events of this year so far have given him a new perspective and he's realizing how important his "family" time is in the summer - at least, that's what I'm hoping.
Well, Jewels - the ds just got home from a basketball open gym. I've mentioned he's NOT a basketball fan, but the new head coach from his school called last night and asked him to come to the open gym and give him a chance to "make a basketball player out of him." He is very tall for his age and the dh is 6'4" so ds will most likely be very tall too - can't wait to hear how the open gym went.
Until tomorrow --- {{{{{HUGS}}}}}} to all!
Julie
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Since several asked about boysenberries...they are a cross between a blackberry, loganberry and raspberry. Walter Knott brought them to Southern Cal and started farming them. His wife sold pies and jams from a roadside stand and eventually opened the Fried Chicken restaurant. To give people something to do while waiting hours for their number to be called, they started adding attractions and thus was born Knotts Berry Farm. I've never lived more than 25 miles from Disneyland or Knotts Berry Farm my entire life (other than when I was in college), so I can't imagine not having boysenberries in my backyard. Even more than citrus (and we have oranges, tangerines, lemons and avocados, as well), boysenberries are Southern Cal to me.
Paula -- I'm so sorry the news on your dh wasn't what you were hoping. There are a lot of options available and it's great that he may be able to join a clinical trial.
Julie -- It will be interesting to see if your son can be turned into a basketball player. My husband was 5'10" by the time he was 12 and had a lot of people try the same with him with no luck. He topped out at 6'4" but just isn't athletic.
Carol -- ugh on the ugly tummy. I get the tiniest bit queasy every day after rads, but fortunately it goes away after about 30 minutes.
Kathy -- glad the tattooing went well. Sounds like dd is quite the little dancer.
Kimberly -- I'm with Carol, nobody is taking my cleaning crew. When I quit working fulltime I did switch from every week to once a month since I have more time to keep up on some of it. But, it's sure nice to have a crew come in and do a thorough cleaning.
D1 -- It's interesting to hear everyone's hair reports. Once a week I play bridge at a sanctioned bridge center, so there are a lot of games going on. A woman I didn't know came up to me today and asked me if I was going through chemo. I told her I finished about a month ago and was blown away when she told me she finished four months ago and today was her first day without a wig. Her hair looked great and it wasn't Jamie Lee Curtis short, either. I would never have guessed she was only four months out. Really gave me hope that I will be able to dump the caps and scarves by the time I go to Russia in September.
Hubby and I are going to Indiana Jones in a bit. I saw it the day it came out, but his company does movie nights where they rent the whole theater and that's the show they are doing this month. He was going to take our 17yo, but kid ended up working tonight, so I'm the back-up date. LOL!
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Good afternoon ladies,
Busy day. Got caught up on business stuff, online banking and the like, then it was off to the plastic surgeon’s office. I’m all inked up and ready to be exchanged and lifted this Friday. WhooHoo!!!!
Didn’t make it to school until after lunch. My appt ran late, so figured since I was late anyway, I'd stop by REI to pick up some stainless steel water bottles. No more plastics for me. I replaced my plastic storage containers with glass, and don’t plan to replace the baggies, larger ziplocks, or garbage bags when they run out either. Maybe too over the top, but when hydrogenated oils are one molecule away from plastic it makes me wonder about the power of our oil industry since plastics are made from fossil fuel products.
Went to get the ole port flushed since I missed it yesty, and brought flowers to a coworker just finishing chemo today while she was at the lounge.
Speaking of the lounge, the nurse who discovered breast cancer while pregnant, the one I gave the Super Girl cape to had her baby. A boy…almost 7 pounds and 4 weeks premature. Can you imagine how big he would have been had he gone another 4 weeks? She’s a tiny little thing, so having him early was a blessing in disguise. He’s so cute…Ok, the picture of him is so cute since I didn’t get to see the real deal.
Paula- Wow, I’m so sorry that you didn’t get the news you and Ed were expecting. I am glad that you’ve got access to lots of information about the drugs being used and do hope the insurance will help cover the other costs for the drug study. I wish there was more I could do or say to help make this set back easier for you guys. I’m sending lots of positive energy out into the universe for you and your family as you make your way through this new maze of decision making. (((((HUGS)))))
Kathy- OK, so the description of the tattoo sounded like it was painful, but you didn’t say anything about it being painful. I can handle EEEWWW. Can you believe you’re done with the whole reconstruction already?
I totally remember being in ballet as a kid and how much I loved it. I didn’t get into gymnastics until 7th grade when we left the Santa Cruz area since Truckee didn’t have a dance class.
How cool that you have connected with someone that works with you now and that you’ll be helping new cancer patients through treatment as a “peer mentor”. There goes another Jewel spreading the bc support around. Man how do we Jewels just shine!!!!
I hope your GI troubles have calmed down by the time you read this, Kathy.
LOL on channeling D1 for a little extra cash to get a cleaning lady to come to your house.
D1- So, your painters didn’t just look at your balditude and say, “For you, the whole house for $1500?” Geez, what’s up with that?
I’m with you on the cleaning in between visits, but I won’t go whole hog or anything. Just spot cleaning- dusting and counters. I will definitely let the cleaning service do the hard stuff. The service leaves a score card at the end of each visit, so the teacher in me will love ‘grading’ each standard of clean. HeeHee
ABSOLUTLY RIGHT ON regarding being at peace with my decision. I just thought it was kinda interesting to see my usually very enthusiastic oncologist shut down and just not talk to me after I said NO after every reason he gave me for doing rads and Tamox, and supplied my own research facts. I know he cares about me, and that he knows it is my choice not to pursue further treatment, but feel the bigger issue might be that he may never have been challenged before, which caught him off guard. Like I said, after his long vacation in Greece, he’ll have gotten over it. Besides, my winning personality will not be easily shunned. HaHaHa
LJ13- Your hair description sounds goofy for sure. My friends came in growing all forward towards her face except the back. We so need to post hair pics at different stages. That would be great! As Carol stated, much more fun than talking about digestive troubles and funky nails, eh?
Jenn- Me too on the beet thing- picture me sticking out my tongue right now – blah!!!
We have blueberries, a peach tree, a lemon tree, a blood orange tree, tomatoes, zucchini, and a variety of herbs, avocado, and our little vineyard of wine grapes growing in our back yard. Greg wanted an edible yard.
I’ll second the going topless motion as a badge of honor and courage!!! I go topless in public all the time and don’t think twice about it. But then like you said, Jenn, I don’t have teens at home who worry about how this impacts them and what others will think.
Try a magnesium and Vit. D supplement for the restless legs…and they are good for the blues, too. Melatonin is also great for sleep and as an added bonus has been cited as blocking estrogen receptors like Tamox does.
Glad the storms missed ya.
Carol- I’m so sorry about your crummy tummy. You’re almost done, though!!!! Keep that light firmly fixed in sight.
I was thinking about doing the Reach To Recovery program as well. I haven’t really looked into it specifically, just read about it on the American Cancer Society website.
What do you mean helping just one person? You’ve already helped several in your area! I have no doubt if you get involved with this program that you will certainly help out more than one cancer patient.
My surgery is Friday. Tomorrow is a be at school all day kind of day since it is the last day to see my kids and say, “Have a great summer, see ya in August.” We’re having a Pot Luck luncheon for the staff after school, so that should be fun.
I tasted a slice of pizza today at school. I was so excited I could taste it. Yep, things are picking up in the ole taste bud dept. for sure!
I,too, am a commute from hell widow. My dh doesn’t get home until 6:30 or later, so dinner is usually around 7:30 or 8:00, which is too late in my book, but what are ya gonna do?
Hope the cream of wheat- just a guess- was good on the tummy and that you were able to sleep through the night.
Sleep well Jewels. OK I just had the urge to do the Waltons’ good night John Boy routine. HeeHee
Good night, D1, Good night, Carol, Good night, Kathy, Good night, Paula, Good night, Tina, Good night, Julie, Good night, CathyCa, Good night, Sherry, Good night, Jenn51, Good night,Patty, Good night, Joan, Good night, CarolJ, Good night, Norma, Good night, LW Dana, Good night, ARDeb, Good night, Carla, Good night, Maz, Good night, AZ Donna, Good night, CarolC, Good night, Kris60, Good night, Wendy, Good night, Therese, Goodnight, Sheebas, Goodnight, Sista, Good night JKiss.
I’ll check in after school tomorrow.
SIS KimberlyPS CathyCa and Julie- You must have been composing while I was in Word. Julie, hope the ds' basketball 'try' was a good experience for him and the the dh decides to honor his summer 'cation. I know he's a valued employee for certain, but taking time for himself and the family this year will be extra important and needed. I know that teaching all year leaves me needing those summer weeks for rejuvination and recharging.
OK....I'm going to admit that I just stopped composing so I could get up and dance around and sing Walking on Sunshine....can't sit still with songs that have such a great beat.
CathyCa- Haven't seen the new Indi movie, but want to see it. Maybe next week when I won't be able to do much else with drains hanging out of my body. I'll hide 'em under a loose shirt and have a friend or family member take me to theater so I can drool over Harrison Ford.
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Hey Kimberly, close on the dinner pick, ended up making Swedish Pancakes!
Nothing like bumming me out, was thinking that today was Thursday, (knew your surgery was Fri). I need to re-group on this work thing, I really have not wanted to go in to work lately and its getting worse by the day.
Noticed your doing on-line banking, thought I'd share my latest billing blunder ... sent a payment to payoff my credit card, (finally gave in to having the same acct with the dh, I've kinda liked my independence with my own acct), anyway, ended up bill paying it to the cable company Oops!. Needless to say, I wouldn't have had to pay a cable bill for quite some time!!! Another chemo brain moment!!!
Cathy, enjoyed the "berry history", we're due for a trip to Disney/Knotts. Havn't been since my little guy was 5, took him right after I was divorced, kinda an interesting time for me, traveling single with my son.
Julie, sounds like a record skipping with the workaholics ... guess we should be happy their hard workers, and hopefully just as dedicated to their families. I know my "guy" in the long run has his priorities pretty well in check.
Looks like Kimberly covered the night for all ...
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Evening girls,
Came in from rads this evening, went straight to a warm bath and then took an hour nap. Guess I'm catching up on some much needed sleep--having a little trouble sleeping through the night.
I've poured through most of the research info on dh's clinical trial drugs. My feelings are mixed. They are showing promise in gliomas but only 20-25% of the subjects actually respond and it only buys them time--all of them eventually had to quit the studies d/t tumor growth. Given the tumor type, this is still a treatment breakthrough--Temodar (the miracle drug for GBM) has similar stats.
Anyway, no use "borrowing trouble" as my Granny used to say. We're going for the trial and taking it one day at a time.
Carol- here's hoping you're all tucked in comfortably and the tummy is feeling okay. I'm remembering you in my prayers and sending lots of good wishes your way!
KathyL- What a drag to have your GI system rebel on the day of your tattoo. Thank heaven you had the day off today! So the tattooing is just to give the new nip some color, right? Glad it wasn't a painful process and hope you heal quickly!
I am glad you clarified what a flow-a-holic was... cuz I was trying to figure out what kinda "flow" some of our Jewels were addicted too and I wasn't coming up with anything appealing!
And you will be a BEAUTIFUL model for the BC coalition--go for it!!
Good luck with the cleaning service--hoping you get at least a couple of free cleanings. I had cleaners for years until dh became disabled 2 years ago. Didn't need them at first as I was home with him during his treatment that first summer. Then we just couldn't afford to have them back when he didn't get to go back to work. Eventually he recovered to the point that he took over most of the cleaning and did a great job. I'm feeling a little overwhelmed right now, though, and thinking of getting someone in for a good deep cleaning.
D1- I have always picked up before the cleaners were due and finished the job after they left. I loved having them in, though, just to get the big stuff done (they were great with the bathrooms, which was worth the whole cost of their services IMO).
LJ- LOL at your hair description. I just saw a lady at the onc's office who was 4 months out and had a healthy THICK head of hair. It was just as you described with the directions the hair was growing. Mine is still too short to tell which way it is going to go. Seems like I can see new growth every day, though.
Jenn- I guess you can count me in the restless legs club? I wake up in the night a couple of times a week, legs aching, and can't seem to get them settled in a comfortable spot to go back to sleep. I keep ibuprofen in my nightstand so I don't have to get out of bed when the legs act up. If I can get the aches calmed down I usually go back to sleep. Sometimes the ibuprofen works, sometimes I need a benadryl to get back to zzz-land.
I've been taking a multivitamin since finishing chemo and I do think the legs might be a bit less achy--only waking up a couple of nights a week now as opposed to every night.
Julie- Pools are a lot of work, aren't they? My SIL (who lives next-door) has worked on hers for a week. It was really gross when she first uncovered it but it looks so inviting now. The temp is still a bit too chilly for me (68). She has a solar heater to boost the temps--being in between two mountains we kinda have to "pipe" the sunshine in here!
CathyCA- I've never had a boysenberry either. Wonder where Mr. Knott brought to CA from? Interesting story--I'd heard of Knotts Berry Farm, but didn't know the background.
I think you'll have a nice head of hair by Sept.--at least judging from others I've seen that are that far out from treatment. (reference the lady I mentioned to LJ above)
Kimberly- whoa oh! And don't it feel good!! (Don't remember who sang Walkin' on Sunshine, but what a great song!)
LOL at the Waltons' good night routine.
PALady- you have your PET Scan tomorrow. Thinking of you!
Vettegal- you and Denise (and Vetteguy) have been on my mind. I hope all is well with you.
Take care all, Paula
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Good morning Jewels,
I have a bit of time before I head out for my full day in the classroom. I may get in a walk afterwards, and then the dh wants to go to dinner tonight at the new organic food restaurant with the chef I like- the one who did my Bye Bye Boobies Bash. I can't eat or drink anything after midnight and my surgery isn't until 1pm. I'm thinkin' my tummy will be growling up a storm and complaining big time.
Carol- Hope your tummy settled and those Swedish pancakes did the trick. Did you sleep well?
Paula- That sucks that you can't sleep well with aches in your legs/restlessness. A magneseum supplement with Vit D and a meletonin might help you out.
Glad you and Ed have decided to go for the study. Like you said, no use borrowing trouble worrying when it is just as likely Ed will be in the 25% responders. I can't even imagine how tough this must be for you all to be on the treatment wagon again with everything you've all been through the last few years. ((((HUGS))))
I'll try to check in tonight, but it will more likely be in the morning as reading your posts and responding will help take my mind off of not being able to eat or drink my Green Tea in the morning.
Have a wonderful Sunshiney Day...and if you don't have sunshine where you are, just put on the song Walking On Sunshine and dance about...a great mood lifter!!!!
D1- Read on another thread you were doing the Komen Race for the Cure on Saturday. Did we know that? Well, have a fabulous time... blubbering is totally allowed.
SIS Kimberly
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Happy Thursday, Jewels.
Jenn-I'm lol on the beets. No one in my house likes them, either, so whenever I go to one of those salad bars, I load up on the spinach leaves and beets. Makes your poo red, tho, so I always have to remember that I ate beets and not freak out! (TMI, I know, but what do you expect from me?)
I grew up in Michigan and we had fresh fruit and veggies, too. Like you, I'd eat them right out of the garden. We had a very cool hand pump in the garden and we could wash the dirt off and eat ourselves sick-which we did regularly. The memories really make me smile.
I can't tell you how excited I am to have painters doing this work. I think my dh caved on the idea because of the bc thing. Usually he does the painting, and he's very good, but it takes FOREVER. One time he painted these same rooms and it took him 3 years to finish!!!! I got him to paint the powder room about 5 years ago and he still hasn't done the touchup work. Our house is in total disarray while the painting is going on, but I know it's only for a week-not years!
Wow, restless legs sound awful! I don't have that problem. The only issue I have with my legs is that I find I'm really creaky for a few minutes after getting up from a seated position, or out of bed in the morning. I hobble around like an old person till things loosen up and I can get on with it. You should see me get out of the car! OMG, anyone looking on would swear I'm 108!
Carol-LOL on you and KathyL and your distress passing quickly! You're such a hoot (ew, is that a bad choice of words????).
Oh, and thanks for the kind words. You have me stubbing my toe into the ground saying, "aw, shucks."
Congrats to the dh on the new job! I'm not wild about my spouse's travel, either (I'm sure you've all noticed that he seems to be gone a couple of days each week), but if there's some additional payola for you and happy homecomings, maybe it'll be the right thing for you guys.
Hey Julie, I'm jealous over the pool (not the cleanup, but that you have one). We always wanted one, but our yard is teeny, so no pool for us. Sounds like the storms got the best of some of your outdoor toys. We had the storm yesty and I can see that a couple of our neighbor's trees that border our lot have lost some large limbs. Bummer. I have always liked the natural "fence" some big old trees create. I hope the fallen limbs don't mean she'll take the trees down...
CathyCA-so how's the new Indy movie? I'm hoping to see it soon (we never seem to have time to go to the theater anymore-gotta get these kids off to college-both of them-so we can have more date nights). I also want to catch the Sex and the City movie. Loved the tv show. Where are you guys going in Russia? We had Russia on the table for our summer trip this year, but no one bit. We're going to Croatia (the Dalmation Coast, only) and then hopping a plane for Istanbul. Should be a real study in cultural differences! I'm hoping we can stay in the hotel in Istanbul that used to be the prison featured in Midnight Express. That would be so cool, as long as they don't hang ME by my feet for the duration of my stay!
The balditude isn't cutting it with the painters, SIS Kimberly, because the head guy is just back on his feet after a crippling leg break. The poor guy can hardly get around, but he's here, mostly supervising. I could see the pain in his face yesty afternoon when they were finishing up and asked him about it. He seemed relieved that I was so empathetic. But no discounts. Better find another $20 today when I go for my therapy!
I really hope your onc settles down when he gets back from vaca. You both have valid arguments for your positions, but he has to acknowledge that at the end of the day, you're in charge of your body, not him. Stay strong and I know your winning personality will warm him up again.
LOL on the cream of wheat guess! You KNOW Carol's eating that stuff like a mad woman!
Ah Katrina and the Waves, right? Love that song, too. It's so happy.
Doh, read on and see that Carol didn't have cream of wheat! Are the stars out of alignment or something???
Paula-you have incredible strength. I know you and dh are overwhelmed with information right about now, but it sounds like you're sifting through and coming to your decision. I'll do my best to send you positive energy and wishes for a good outcome.
Hey, Julie, how'd the bball go for your ds? We're all about basketball in our house. Dh and both dds played. My dh was actually recruited by a few colleges (biggest was the University of Arizona) in his day, but at the ripe old age of 18 realized that he'd never make it to the NBA, so decided to go to college to study and only played ball for fun. He misses it sometimes (especially now, when his knees won't let him play), but he has some really fond memories. I hope my girls look back on basketball when they're older and know that the things they learned on the court apply to all parts of life.
So today I see my legu again, who will have more therapies to help my rotator cuff. That thing is really painful! It keeps me up at night because I can't get comfortable. It's funny, before it was dx'd as rotator cuff, I was thinking it was le-related and resigned myself to learning to live with this new pain. Now that I know it can be resolved, I have very little patience for it. The mind is a terrible thing sometimes.
Okay, going to check on my painters. I put out some homemade banana muffins for them this morning, hoping they'll give me something as a bonus... (such a conniver, I know).
D1
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SIS Kimberly,
Thank you so much for that story. I just read it and am crying right now. I just had to post today to tell you it meant so much to me.
Joan
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SIS Kimberly,
Good luck for a super successful surgery!
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D1 -- I saw the Indy movie the day it opened and, while it was okay, it wasn't the best movie ever. Seeing a second time, I think I liked it less. It just seems like they are trying too hard. OTOH, I loved Sex in the City. I would go see that again in a heartbeat.
We are going to St. Petersburg and Moscow for about a week. The tour actually starts in Warsaw and then we go to Latvia, Lithuania and Estonia before Russia. I'm curious to hear what you think of Croatia. We're doing a Med cruise in 2009 that includes a stop there. It's a long cruise that goes to Greece, Egypt, Israel, Turkey, Albania, Croatia and Italy.
Kimberly -- Copper Canyon is in Northern Mexico in the state of Chihuaua. It's a series of canyons and I know several people who have been there that think it is beautiful.
Paula -- I think Mr. Boysen (hence the name) was a grower up in the Napa area of California. As you know there are no guarantees in this world, but your dh has some of the best medical people in the world available to him at Duke. Go with your gut and know that we all are pulling for him and you.
Carol -- one of my favorite trips EVER was taking my youngest to London for a week when he was 8. It was just the two of us and we had a great time. I still like traveling with him. It gives us a chance to connect as individuals rather than as a family. Not that I have anything against my husband on trips, but it's a different dynamic.
Off for another exciting round of rads.
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Good Evening Jewels,
Hooray, a whole day without a severe t-storm warning. It looks like the type of day one could pop up, but so far so good.
Carol, so sorry to hear about your tummy. It's hard to believe you are chilly. It was 87 here today. You are right, this place is like a life line. I learn something everyday & find encouragement & bravery in every post.
Congrats to dh for the promotion. How long did you guys date before you married? Sounds like at least 5 yrs. That's cool.
Julie, I'm looking forward to hearing about ds & the open gym. All of my boys are tall, all between 6'4" & 6'5". The oldest wasn't very interested in sports & only was a bktball manager his jr. & sr. yr. I'm sure the coach wished he was more inclined to step onto the court.
Cathy, now you have opened another question. What is a loganberry? I had at least heard of boysenberries before. How wonderful to have all of that fruit in your backyard.
I hope to see Indiana Jones soon. If it's as good as the others I wouldn't mind seeing it again & again.
Kimberly, congrats to your nurse/new mommy. I can't imagine the strain of being pg & having bc at the same time. I hope everything goes well for her from here on out.
I envy your cleaning lady. I had one for a while that was one of Jon's acctg. clients. So she paid her bill by cleaning house so our part was too much money. Then some sort of budget crunch came along (probably one of our boys) & I gave her up. Never got anyone back since then. The little family owned company we work for has it perks, but on the down side we haven't had a raise in 7 yrs. Not much money in the budget for a cleaning lady these days.
I totally support your decision on your treatment. I think I want everything they can throw at this but I can understand why you would choose differently. I think your onc should support your decision, agree to disagree. You go girl!
You have a grocery growing in your yard. How wonderful!
I'll try the supplements you suggested. I did find something at CVS for RLS, homopathic (sp???). Took it last night & it seemed to help. But from about 2:00 I kept waking myself up snoring/gasping for breath because my sinuses were draining so bad. I know they say no rest for the wicked but I didn't think I was that bad. I just want a nights sleep.
Good luck on your surgery tomorrow. I'm with you on going so long without food. If they cut off food at midnight when surgery is 6-7:00 am why can't they let you eat around 6:00 am if you in at 1:00? Never made sense to me.
Paula, I know you & dh will fight with everything at hand. And you have a whole team of us here cheering & praying every step of the way.
I think I am way past the normal pills for the RLS. I've tried Advil, Excedrin & Tylenol, regular & PM. I've taken a Xanax, and a sleeping pill (not at the same time) but no luck. I've tried wine, which was the most pleasant experiment but still no luck.
D1, I wouldn't expect anything less than TMI from you. But you spice it up so good I never think it's TMI.
Can you imagine if your dh & I would try to take on a painting project together. It would NEVER finish. LOL If you keep feeding those painters with yummy treats they will never finish. It never hurts to keep the help happy.
I had rad #4 today. It's still a breeze. Takes me longer to get that cute little pink top on than it takes to ‘shoot' me. They say I have another week before the burn starts. I don't remember reading how anyone else is doing. I am spraying strong green tea on the rad area followed by a Rx cream 4 times a day. She had me start the 1st day, before the burn begins.
Another step in my reclaiming my life - I started using shampoo. It may only be 1/4" long but it's hair & it deserves shampoo. Haven't gone for the conditioner yet but for some reason it made me feel good to use the shampoo.
I better go & help dh with dinner. Then back to the ‘puter to pay bills. We both get paid once a month & today was it. I don't remember who had trouble with chemo brain & ebill pmt but I can sympathize. Not too long ago I transferred money from my mom's ck. acct. instead of taking it from our secondary acct. OOPS!
Here's to all of our health, healing & strength. We Are Women, Hear Us Roar! (If you are too young to remember that in the singular, please don't tell me)
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Hello Ladies,
Although I realize that things could be A LOT worse, I'm still complaining of GI distress today. Trying a bowl of Raisin Bran for dinner tonight, my poor dh is on his own tonight for dinner. Again we have terrible weather, I know that a walk might help get things movin', but I just don't have the desire to walk in the rain. I'll sit here and complain instead ... real good Carol!!!!
So anyhoooooo, I'll back track through todays post and see what's been happening...
Jennifer, aahhh so good to see your spunky post. Sounds like your crusing along without a whole lot of quality sleep. It would be great if Kimberly's suggestion helps you out.
So the dh and I dated for over ten years before we married last year. We were set up on a blind date on Valentines Day of 1997. Over the last couple of years I had voiced my opinion that I would prefer to be married. After several years of dating, it got a little old introducing him as my boyfriend, better half, yada yada, (like we had just recently met). After about 3 or 4 years he had given me an engagement ring, for what ended up being a very long engagement!! He had said from the get go, he wanted his girls in college before he wanted to think about marriage (they we're 8 and 11 then), which I was okay with, atleast I was a few years ago. I like to kid him today that he must have ran out of good Valentine Day gifts, so he ask me last year and we went to Vegas to wed. He has been well worth the wait!!!
Cathy, sounds like you could be our resident travel agent. I'd have to admit that my little adventures with my son on weekend getaways for skating has a certain special feel to them. And as you, I love to travel with the dh, but its not quite the same. We've gotten into a comfortable rut with our travels, some day we need to think about doing something other than golf in "Zona".
Joan, take it your doing pretty good with your rads, or atleast no news is good news on the topic. I'm with you, Kimberly's story was another feels so good, it can make you cry, I consider it a good clenser for the soul.
D1, oh sure, talk about pooing ... just what I wanted to hear!!!! Maybe I should try some beets, god knows the spinach and other vegi's aren't doing the trick.
Love the thought of the dh caving into the idea of having the painting hired out, geeeez I should have opted for some kind of home improvement through this. I think in one of our weaker moments we talked each other into a 62" tv, just what we needed!
Hoping that the shoulder pain eases up, are they hoping that pt will help and you can avoid surgery for relief? The dh dealt with a frozen shoulder which took over two years to finally mellow out.
So we are doing the Race for the Cure? I had thought you we're going to pass on the emotional ride of a walk this year. Might be time to let a tear or two rip. I just got my "pink" shirt in the mail yesterday for the Race here in July. I'll be going over with Kalen to the Seattle event, in fact I probably should ask Debra if she is interested in going as well.
Yep, on a little extra "payola" for the dh, that should get sucked away with the 2nd dd going off to a private "U" this fall.
Kimberly, so you are probably getting ready to enjoy that "last meal" feeling tonight. All organic, sounds right up your alley. I'm with Jennifer, on the timing thing for food and drink. I swear that my surgery in Dec, which ended up being about 4:00pm had me so dehydrated that they couldn't find a vein for my i/v. My two cents is that I'd load up on fluids tonight, (yeah red or white) would be fine!!!
I had forgot about your mentioning your Bye Bye Boobies party, on a similar note, my sil had just gone to a Bye Bye hair party for a friend of hers dealing with a bc. The friend had a face painted on the back of her head, and had "foobies" displayed on her back, and all of her guest we're given a nude colored bathing caps to wear throughout the night. I told my sil, I'd like to meet this gal, her sense of humor sounded awesome.
I'll be raising my glass of "juice" tonight thinking of you tomorrow. Hope your as lucky as our other Gems who have had their "mounds" softened, and have a quick recovery.
Paula, sounds like you could use a good nights sleep, how your able to turn your brain off at bedtime at all is amazing to me. I've probably taking more warm baths in the last 6 months than I have in the last 6 years. Hate to say it but my reliance on taking a little Lorezepam to sleep is almost a nightly ritual. Although so easy for me to type, I know that it cannot be very easy to take Granny's words of wisdom and run with it, but I know you'll give it your best shot. HUGS to ya gal friend!
Kathy, so no report from home today, hoping that your tummy settled down, and your nip is healing nicely. Who needs a pain in the rear and the nip at the same time!!!
Julie, so looking for the open gym report ... is the ds returning?
So its only 5:30 and I'm ready for bed since I don't feel like being up when the dh comes home and starts poking around for something to eat himself tonight. This extra little tummy problem must be that cumulative thing I keep hearing about. Thinking I'll hit the tubber, and lay down upstairs and watch a little tv through my eyelids!!!
A very good night to all, Carol
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Saw my hairdresser today for a "cut" and she told me exactly what LJ said about the hair growth. You Jewels are so smart! I guess I have more hair on the sides than I realized b/c it's laying down already. She couldn't really cut much today overall--- really just trimmed all the long pieces and shaved my neck so I wasn't furry there. But it looks better. And she reshaped my brows-such an improvement. I'm looking much better now that I'm groomed.
In fact, she said to come back in about 6-8 weeks to see where we're at then, but it looks like I may have enough for a pixie style by the end of the summer. Plus we'll do some color then (I haven't decided on reddish brown, or back to blonde yet; dh votes for blonde now). She also trimmed up my red wig again today; the bangs in my face were driving me nuts. And I bought a conditioner so the new hair is stronger as it grows. AND I treated myself to 2 new nail polishes. Overall, a good day in the appearance department!
Saw my GYN today, too (and yeah, I actually worked somewhere in the midst of all this). She is just the best... love her. Anyway, we were chatting so much about my boobs and new nipple, and new growth of hair "down there" (D1, you'd love the way she talks!), the visit went by fast. She's trying to recruit me to do a 5K walk next Mother's Day in Philly. Forgot to ask her about a bone density scan. Don't know if I really need one b/c I'm young, but I know chemo takes a toll there. I'll have to call her tomorrow. Anyone know?
D1: Had to laugh at your painting everything white. And your description of cleaning after the cleaning lady-that sounds like me. One of the reasons I'm hesitant to find someone. Everyone tells me my "dirty" house is cleaner than their "clean" house, too.
Loved your tats info-I only know how to take care of infected ones. Never done the deal from the start. It's actually looking OK today. Maybe I WILL get another someday...
Jenn51: Sorry to hear about your restless legs. That sounds like a major sleep disrupter. Glad the storms did not hit you hard. We escaped the tornadoes and bad winds, just had a lot of heavy rain. Unfortunately, it didn't do much for the heat. It'll be 90s here by the weekend with some good ol' DE humidity!
I hate beets, too. My parents said when I was little I used to spit them out on the walls! I still feel that way as an adult...
Carol: Hoping your belly's improved today. I am happy to report I have successfully plugged myself up (probably to the point that I'll need miralax by the weekend), and I could eat a little today. Always something...
Congrats to your dh on the job offer. Always nice to move onward and upward.
Julie: Yes, I had the nipple made first. Waited about one month to heal, then she tattooed the color on it all (this really creates the areola look). Overall, very easy 2 steps.
Cathy-CA: Thanks for the boysenberry report, and the nice info on hair growth. Can't wait to ditch the wig. I'm just not ready yet with this little bit I have.
Kimberly: Sounds like that nurse's baby was a big boy despite being early. My ds was 4 weeks early and he was 6-7.
Good luck tomorrow. I'll be thinking of you and hoping you get a nice set of tatas!
Paula: Totally think you need to have a cleaning lady right now. Would take at least one task away while you have so much to focus on. I agree about "not borrowing trouble", too. I hope you and dh will get some positive results. You are in my thoughts often these days.
Tomorrow's my Relay of Life. I'm pretty excited. And happy to report, I had the highest internet sales for our relay. Pretty cool. I think I've raise about $1200 so far. Pretty good for a gal who's only ever sold GS cookies as a kid!
‘Night Jewels. Will be back sometime this weekend. I hope to get some pictures tomorrow night. Will try to remember to get a "head" shot of the growing hair while I'm at it.
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Carol: Just saw your post. We were probably composing at the same time. Hope tomorrow's a better day for you. Between you and me, I think maybe we could've balanced each other out and had a normal GI tract!
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Good evening, Jewels! I had a pretty busy morning and it wore me out! Took the ds to the dentist at 8:00 a.m. then he and I ran errands and didn't get home till after 11:00. We then spent another hour or so putting away everything we bought. I sat on the couch for a tad, then headed outside to read for a while. About 6:00 tonight I laid down on the couch and actually fell asleep for two hours! I haven't done that for a long time - it felt good, though.
Cathy - you're just full of historical info about Knotts Berry Farm!! I went there when I was little, but haven't been back since. The ds's open gym for basketball went well - I think he actually had fun, which surprises the heck out of me! We'll see how it goes - he is pretty athletic in other sports, so if he can get the basics down, he might actually catch on.
Kimberly - I'll be thinking about you tomorrow as you have your exchange surgery!! Wooohoooo for being one step closer to being done! So glad you're taste buds are finally coming back. Hope you had a good day at school and got to enjoy your dinner tonight!
Paula - hope you're not completely overwhelmed with all of the information you're having to go through. Glad you were able to catch up on some of your sleep. Thinking of you all! Yes - the pool can be a lot of work - especially in the beginning. Once I get it stabilized, though, it's not too bad. My ds is being a little impatient as he's ready to get in it!
D1 - we saw the Indy movie last week to celebrate the ds's good grades on his report card. The boys LOVED it!!! I enjoyed it too - just not my favorite kind of movie. Several of my friends have seen Sex In the City and they have all raved about it. Hope your appt went well today and you have some relief from your pain! We'll see about the basketball and my ds - my dh played through junior high, then became a wrestling "star". The ds tried that when he was younger, but now says he wants nothing to do with it. Guess we just have to let him work through all the options and figure out what he wants to focus on.
Jenn - glad your rads are going well for you. YIPPPEEEEEE to using shampoo again!!!! I bought some of the shampoo that is supposed to help "stimulate" the scalp and help with the growth - Nioxin and Nutri-Ox are both ones that are supposed to be good. Okay - guess I'll be the first to post my "growth" pictures. This one is from tonight - 7 weeks out from tx. It's a HORRIBLE picture, but the ds took it and was very impatient to get it done so I had to settle - it's definitely getting darker every day.
Carol - you gripe all you want, dear. I'm so sorry you have such GI distress after your tx. Just fyi - my dh and ds SWEAR by "Long John Silvers" for getting things moving if nothing else works --- ha ha ha!!
Kathy - I can't WAIT to get back to my hairdresser for a cut --- obviously it will be a while, but I just love going there. We have such great chats! Glad your gyno appt went well too - good that you like her so well. Hope you have great weather for your Relay - congrats on raising so much! I'm getting excited about mine at the end of this month.
Below is another pic of my sister and I before we headed out to the Cardinal game on Sunday - we had to take it of ourselves so we both look a little goofy. We laughed so hard b/c we kept looking like total dorks!!
Well, better head to bed. I'm spending a few hours at school tomorrow morning before my "fill" appointment in the afternoon - have to get up around 7:00 again and I'm SO not used to that. Hope everyone has a great Friday!!
Julie
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Hmmm. After reading the new posts, I'm a little overwhelmed here. I'm just amazed at how supportive a bunch of total strangers can be to one another. And to think just 6 months ago we didn't even know each other! As always, I'm humbled by the Jewels.
Enough sap (oh, I'm going to be SUCH a mess tomorrow in my pink t...). So, yes, I'm doing the Komen Race for the Cure tomorrow in DC. I've been trying to organize my family logistics for weeks now and even tho only dh and I are available, I'm excited. A friend of mine (she was the one who ran my wheelchair into the wall and let me go down the ramp in the hospital, you may recall that story) and her dh are joining us. Since we signed up late, only XL shirts are available, but I'll use mine as my gym rat shirt after tomorrow, and XL is what I like in the gym (not a spandex kinda gal-but you all probably knew that already). I doubt we'll take a camera as the dh's model is really bulky, but I'll be smiling all the way!
The painters are here to finish up this morning. I'm really pleased with their work. Last night I was able to put stuff back into our built-in bookcases and I was cleaning everything. Washed anything I could wash and carefully dusted everything else (even used Q-tips!). I got up this morning and cleaned the stove (I know, you've heard that routine before) and started washing the windows. The painters arrived before I got through the windows, so there will be more to do after the Race tomorrow. We're also going to go out and buy a new rug pad for our area rug (we have wood floors), since the old pad was deteriorating under our feet and we didn't realize it! Once the painters leave I can start cleaning the floors well and I also want to clean the kick guard (is that what you call it?) under the kitchen cabinets (you know how they get all scuffed). I must be totally sick to be this excited about cleaning my house...
Unfortunately, college girl has invited her roommate for next year and another friend to spend the weekend with us. I'm not wild about having houseguests when my house is in disarray, but everyone in my family keeps telling me to take a chill pill and not worry about it. Grrrr.
So, SIS Kimberly is getting her new boobs today. I'm thinking about ‘cha, girl. And I'm with everyone else on the food thing. If your surgery is later in the day, they should give you a later "stop" time with the food/drink. I actually tried to negotiate that before my last lumpectomy/AND, but no luck. Anyhoo, you're on my mind. Get some good girls!
Wow, CathyCA, you're covering a lot of territory in the old country! Is this an organized tour, or are you and dh putting this together yourselves? Part of the reason we didn't do Russia this summer was no one wanted to be on the train so long between St. Petersburg and Moscow. We did a lot of training last summer and the girls needed a break. There's so much world to see that I'm okay with that. We did think about getting to Croatia a couple of years ago when we went to Italy, but the logistics were too much. I think a cruise would be a great way to see both (we were traveling by car that year). I think that's why everyone wanted to go to Croatia this year. Like you, we're all about traveling in our house-don't have fancy cars or clothes, but we go on kickass vacations!
Jenn, I'm so happy to have you regularly posting again. Thanks for coming back and telling us what you're up to. Funny you'd mention shampoo, I just started using it again myself about a week ago! Like you, no conditioner, yet, but that will come. I've also stopped slathering my scalp with face lotion as I found it was making my "hair" greasy. Maybe I'll be "normal" sooner than I thought!
Oh, keep lubing during rads. I must've lotioned 6 times a day during tx and for at least the first 2 weeks afterward. This past 2 weeks (weeks 3 and 4 after rads), I've cut it back to 4 slatherings a day. My skin is in really good shape despite all the dire warnings I received beforehand. I think my rad onc told me all that ugly stuff so I'd stay on top of my skin care. I'm even still using the Dove soap and Tom's deodorant they recommended (although as soon as the Dove soap is gone, I'm going back to my old soap and deodorant).
Oops, Carol, didn't mean to be insensitive with my poop talk. We had chicken, black bean and corn enchiladas last night and they moved right through me-perhaps you should head out to a tex-mex joint??? (JK. I'll bet the thought of it made your tummy churn-how mean can I be???) Seriously, you doing better today? Oh, and I think I did better with the painting than the 62" TV-but just my opinion. (62"??? That's like a total home theater! Make sure the ds stays away with the bb gun-we've seen what they can do!)
Ah, KathyL, a girl day. How wonderful for you. I didn't think I was all about that kind of stuff, but I've really enjoyed girl things in my post-chemo world. Who knew? Oh, and is your "down there" hair growing like gangbusters? Mine is. Best hair on my body. But it's coming in stick straight! And it's black, black, black! I don't remember it being that dark before. Wish the pigment would travel to my head hair...
Am I reading this correctly? Is your Relay for Life today (Friday)? If so, enjoy!
Julie, Julie, Julie. Be careful about that candle at both ends thing (perhaps I should pay attention, too). It will be interesting to follow your ds's budding interest in a new sport. You'll have to let us know what he decides to do.
I LOVE your pix!!! I think your hair is just how mine was at 7 weeks, but you couldn't see mine because it's all gray (it's hell to get old). I'm starting to get some color now (particularly since I had the color added and have been using a shampoo that boosts a color job by adding a hint of color), and that really helps. I'm going to have to figure out how to get a new picture taken and posted.
Good luck with the fill today!
Okay, my computer has been hiccupping and I'm afraid of losing this latest masterpiece (even tho it's in Word, my computer has already told me it needed to do a document recovery-whatever that means). So I'll wrap it up.
If I don't get a chance to pop in later, I'll give everyone the post "Race" report tomorrow.
Onward!
D1 -
Hey there !
Just a quick note. Today is my LAST Treatment woohooo!!! And of course the nasty f shot Saturday.
Tonight is Relay in the county I work in. Our team at work is having a bake sale and will sale hot dogs at the relay.
I am so behind in reading up on everything. I hope to catch up this weekend. I hope each and everyone of you are doing GREAT !! I think about you often even though I don't post much. You are all in my thought and prayers. Love and hugs to all
Carla
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Good Morning Jewels,
It was so good to see my kids yesterday as well as the staff. I cleaned up my room – getting things off the wall, shelves emptied, back room organinzed and clean, and whipping down counters and stuff. My sub, although a sweet guy wasn’t too keen on keeping a clean room. The new night janitor told me he really tried, but it was always such a mess on a daily basis. He’s heard what a neat freak I am at school and looks forward to cleaning my room next year.
All I can say, is it felt so good to get all of that done. I just couldn’t bare walking into that mess before school started. Granted the kids packed the boxes based on what was in an area, so I’m sure it’s a mish mash, but that’s not a big deal. I’ve got two retirees coming in to help me set things up for next year the week before school starts. I'm so lucky.
So, today is the big day…NO, my foobies aren’t going to be big, just the fact I’m getting ‘em sillies...or was that just going through my mind? haHaha
Couldn’t sleep after about 4am. This patch I have to wear the night before surgery just parches me. I drank tons of water the last two days, and I feel like my mouth is a desert and my skin is as dry as the Sahara, too. Blah!!!!
I’m hungry and thirsty…WHAHHHH!!!!
OK, I’m done whining. I’ll just read and catch up on posts to take my mind off of things.
D1- So, your painters should be done today. Of course, after feeding them homemade banana nut muffins, they might linger a little longer hoping for more.
I know getting stuff clean and put away is such a boost to the ole mood. I like stuff to be in its place, too. Drives me nuts to have piles and things looking chaotic for too long.
How’s that rotator cuff after the legu yesty?
Joan- I’m glad you liked the Dog story. And thanks for your best wishes for today’s surgery.
CathyCa- I am so jealouse of you and D1 traveling to that part of the country. My dh and I really want to see Croatia and Slovakia and Slovinia as well as the other countries mentioned. I’ve only been to Italy and had a meal in Switzerland. Can’t wait to hear all about both of your journeys.
Thanks for the info on the Copper Canyon. I’ll put that on my list of places to see.
Jenn- It is so good to see you posting at length, and yeah for the lightening and stuff skirting by you this time around.
LOL on no rest for the wicked and you not being that bad.
What is in the stuff you already got? It may be magnesium and Vit. D.
I loved Helen Reddy growing up.
Carol- It pains me to hear you’re tummy is still acting up,and more than usual. FUSE!!!! Hope the Raisin Bran got things moving for you.
Yeah, I’m afraid I will be dehydrated by the time we get this show on the road. I drank lots of water the past two days, but with my parched mouth and skin this morning, you’ld never know it.
Glad the dh’s promotion will be a good move for him and provide a little extra mula for the step daughter’s private university.
Wow, dating for 10 years. That certainly does take commitment…you had a common law marriage at the very least before Kent whished you away to Vegas to make an honest woman of ya. Congrats.
I love your friends Bye Bye Hair party with the nude colored bathing caps. LOL
Kathy- Bravo on the pampering yourself time!!!! My sides are really short, but laying down already. My top side is still sticking straight up and looking a little darker on top than the sides. Hmmmm, a reverse skunk look?
Excellent on particapting – or thinking about it- another race for the cure just as you’re heading into on tomorrow.
Have a great time, and congrats on being the big mula raiser!!! WhooHoo!!!!
I have the same comments about our house. The gal that came to do the estimate said, “Wow, your house is pretty darn clean for someone who claims to not have been able to keep up.” I haven’t dusted and vacuumed in at least a month, I am sad to report.
Julie- You’ve been a busy bee. Glad you’ve got the get up and go on track again.
What a great pic of you, and of you and your sis. You’re hair is definitely coming in dark.
Glad the ds had a good time at bball. Can’t hurt to have another sport to enjoy.
Well, it’s 7:30am, and I’ve got about 2 and ½ hours before my twinsis arrives. We- twin sis, dh, and I, will leave for the hospital around 10:30.
I’ll post when I can. Hopefully, tomorrow.
SIS Kimberly -
Hello Jewels
Happy to report I'll be eating something other than a bran diet for dinner ... enough said!!!
Julie, thanks for sharing the great pics. You could just tell by the look on your faces that you we're going to have a blast at the game. Got to thinking, seems like there are a lot of Jewels with sisters, hearing of the bonds between so many of you is cool.
I had to google "Long John Silvers", we must not have that franchise here in the PacNW. We are going to have some seafood tonight, scallops ala something are on the menu. I probably took the wrong approach to my "little problem", maybe I should have tried a high grease diet to get things movin', YUCKERS ... or maybe D1's, bean filled tex-mex. Glad I'm laughing about this now!!!
D1, hey be careful with that wild woman your walking with tomorrow, god knows where she might lead you!!! Hope you really enjoy the whole experience ... I can only imagine how emotional of a day it will be, and its great that your dh is participating with you. Take it all in gal.
I've decided that I'm probably not half as anal retentive towards house work as a few of you are, I'd have to say that I've never used a q-tip to clean house before. You take the prize for that one!!! Gotta like having the painting project wrapped up in 3 days.
Hopefully your "chillin" tonight ... TGIF ... bottoms up!!!
Kathy, looking forward to hearing your report from the Relay today.
Sounds like you crammed a whole lot into yesterday, glad to hear that you took some time to do something that made you feel good. Seems like most of us spend our time out and about still going to doc visits (which you seemed to do as well). I'm with you on having a great OB/GYN, there's nothing better than having somebody you can really be open and honest with. I so vividly recall last Oct, when my doc was her bubbly self until she did my BE, she turned serious as a heart attack in a nano second.
Boy it sure is difficult to find that happy medium with friggin' meds to keep the ol' system working properly ... here your hoping your not plugged up and now I'm concerned about having a little too much Draino. I decided the last two days to forego my Zofran, thinking that might be one of the culprits, to my surprise I probably havn't needed it all along. Nine more days and hopefully that whole deal will be a memory!
Kimberly, hope your home and resting comfortably this eve., you should be one pooped out gal tonight with that early wake up call.
Carla, I have to say that I thought your txts we're wrapped up, glad to hear that as of today they are. Hoping that your se's are minimal, and you too can just look back and reflect on what you have been through, and conquered with courage.
Time to motivate to the kitchen, I've been less than interested all week in cooking, probably should make atleast an effort tonight.
A good evening to all, Carol
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