INSOMNIACS place to talk in the wee hours
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I am sure hoping it isn't LMD. The neuro onc NP said she didn't really think that is what it looked like on the scans and the report on the lumbar spine says something about a tumor in the edidural space which as I understand it is NOT LMD and would be reachable by systemic chemo (which I am on)... No results from spinal tap yet.
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Oh, that only took me 45 minutes to write.
I forgot to share a picture of my new niece, Reese:
Arrived on May 23rd.
6.5lbs & 19 in
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Loverly - Gosh golly you have had a lot going on! I always thought swimmers to be very tough people. All that physical activity and freezing water to boot. My DF's Son was in competitive gymnastics for years. He finally gave it up because he could not find a good coach. I hope this new one gives lots of encouragement and the proper amount of challenge. How exciting DD1 is graduating! Will you host a party after, go out or let the kids do their own thing? Dysfunctional Family Feud is one of my least favorite games. I also often play the judge/referee. I will say a little prayer for you that things go well
Edited to to softly coo over the sweet little babe - don't want to wake her up
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Lover-Welcome Reese. Such a cutie. Love babies.
I'll keep in mind on taking it easy.ย I actually vacuumed the area rug in my living room today.ย Hopefully I won't pay for it later.ย Everyone says take it easy.ย Just feel like I should be doing more at 3 weeks out.
Happy Wednesday everyone!
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Purple - Why are they looking for LMD? I just went through same scare with my neuro/onc. I've had numbness in one arm and one leg that has increased over the past 3 years. I have multiple mets that have contributed to damage in my spine.....one fracture, 2 herniated discs,several disc bulges and many areas with weakened bone. I am unable to have an MRI because of some unintended metal in my spine. My doc wanted to rule out LMD as the cause of my numbness. He prefers the MRI image for diagnosing as he says it gives the clearest reliable image. Although he considered it less reliable, he tried to push me into the spinal tap. I declined. My CTs clearly show pressure on nerves and nerve roots from discs, tumors and bone. My symptoms also have been for a long time. The doc agreed to wait on the spinal tap. I hate you had to go through getting one! And while on chemo...gee. Your MRI should give the answers needed. LMD is super rare. If you have any questions or want someone to bounce ideas off of ask away. Each of us has knowledge to share from our own experiences. Lots of support and encouragement from all
(((hugs))
Sensi! Step away from the vacuum cleaner! Stay far, far away from it! Nothing good will come of it. Rest yourself with ice cream and silly TV shows
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lover, cute baby! First niece? Yeah, we get more baby pics. Did DD decide on which college she's going to
Sensi, I know it's hard to stay down when you feel good. Trust me, you don't want fluid to build up under your incisions!! Or you'll end up going in once a week to have needle aspirations. Been there, done that.
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Susan congrats on your run, that is quite an accomplishment.
Shep I hope the pug boat made it in time to save Jazzy. Your cat is adorable.
Beautiful wedding picture and another cute baby.
Sensi take it easy, lymphedema and cording are not fun. I am like you , I have a hard time admitting I can't do everything. Smaarty is right you do not want fluid under your incision, I had all three .
Minion hope you get back good results.
Loverly are you a swimmer as well? Ignore your warring relatives , some of my sisters are still not getting along and they are not interested in reconciling. I don't get it but they are not going to change.
Nice to have our house back, living in a construction zone is one huge dusty mess. I made some seat cushions for our kitchen chairs, I am not tall and the chairs are low., so now I sit maybe an inch higher lol. I am going to make a valance for the kitchen window next. Here is a picture of finished kitchen.
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here is another one
k
we white washed our fireplace 0 -
Hi can't even believe how yakkitty you are. I've been in a mood, and the IRS thingy. And just a thing to take a break .Hey, 7years I get a vacation. Seriously I'm on a vaca. . No back look at the moment. Holly Kitchens MBC is on my fb feed. I wrote the following
Holley was a big part of the breastcancer.org family. I have been there for 7 years. We know that some of us survive and some don't. We know that there isn't a rhyme or reason to any of the beginning or the ending. We know that the stupid "Healthy Lifestyles" promulgation is total bull shit. Holley brought to the world what MBC is. Thank you Holly. You created a voice for MBC. "
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Sassy- I did not realize Holly Kitchen had passed. Thank you for bringing this to my awareness. She did a lot to create the awareness around Stage IV cancer.
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I'm sorry to hear about Holly. She was awesome.
Lookforward, I love your kitchen. It seems like all the kitchens here have dark cabinets and I hate them. I like all the white and shining in yours.
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Thank you Wren.
There is far too many women dying from bc, it is heartbreaking seeing the number of young women who succumb to this disease. Holly brought a lot of awareness to MBC
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Hi all, been lurking for awhile and not posting.
Sensi, I always read your name as Sensei which is Japanese for teacher. I get a chuckle out of myself when I do that. Yes, I'm easily amused. My BS, after taking my drains out after six days had me wear a tight sports bra and pad it for four weeks so fluid wouldn't build up. I wore it a little longer than that and didn't experience any problems.
Lover, hope the family behaved itself. Sad to think grown adults could ruin a happy day for your family. Another milestone reached for DD1, yay! Oh to think your DD2 swimming outside in cool weather makes me shiver, brrr.
MOmmyof2, congrats on the B. That's a good sound grade, particularly when you have a family.
JWoo, hope DBF is recovering nicely and you are doing well.
Love all the baby pics. Each one is sooo adorable in her own special way.
Sas, sorry to hear about your woes. Take a deep breath, actually several, with the IRS problem. I am optimistic it will work out. How are the wedding plans coming along. DD has her DJ booked and told me no rap music at my request. Has booked a block of rooms at one of the hotels downtown. She didn't realize the date she picked was the weekend of the Army 10 Miler. A lot of the hotels are already booked up. Her venue provides a wedding planner so she got involved and found a very nice hotel. She is now checking into photogs. We are deciding whether to go with the dessert plan or get get a wedding cake from an outside vendor. There must be something to the dessert since they don't do a cake and there are lots of weddings/receptions there. Plus, no hassle with a bakery. Hmm, I think I just talked myself into the dessert plan. Tasting menu will be in September so we'll see. Must say her dad and I are paying for the venue and catering. She is picking up the other items. Wish it was the other way around, LOL. But with two daughters, we are well prepared to take the hit. We were talking about table arrangements and she said nobody better run off with the flowers as we have seen people do.
Welcome newbies! PurpleMinion love your name. I have a fondness for the Minions as I have taken DGS to Despicable Me and Minions when he was here visiting.
So sorry to hear about Holly. It's sad when we lose a member. Brings home the fact that life doesn't give us any guarantees.
Hope everyone else is doing well. I apologize for not addressing each of you but I forgot to take notes.
Night, night ladies. I've had three days of four hours and feel like I'm fading. Let's hope.
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https://www.facebook.com/HolleyKitchenCancerLifer
Hollley created a movement. Since we basically, are lifers, her movement applies to us. She passed away months ago. Her video will go on for ever..
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beautiful kitchen....how do you white wash brick? And we're they dark to start ?
I cramped up after my run. My bad...didn't stretch after, and to start work.
At Keats lo know I can do it during my good weeks. Would live to get back to 5 mile runs. I walk then now. But I will try without pushing to hard.
The kids move a week from Memorial Day weekend . And that's when I see them again. We and her I laws are very busy painting and fixing stuff in their hous in Wisconsin. We piggy back each other. Claire's mil, was there taking down wallpaper yesterday, then my hubby went and skim coated the wall today. I have already painted 2 bedrooms. Going back next week to see if we can finish the front room. They are so blown away on how much we have done. But we all love doing this sort of thing. We are happy !!!!!
Got prednisone high tonight. Blahhhhhh
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lover, beautiful baby
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Jazzy ~ Yay! You have your custom patio set to look forward to. FFH is an impulse buyer and drives me nuts. He is terrible for making expensive purchases without consulting me. He is as a simple minded child with a paycheck. I'm with you; better to take your time and then take care of all other obligations first. Then you can REALLY enjoy what you bought
Susan ~ Chasing after a toddler? Elena is going to be chasing after you! lol ! Wonderful that you got to do something that brings you joy. Hope you are able to relax in the comfort of your new mattress topper. Nothing like a cushy bed to rest up in. Don't let the naughty doggie push you out!
Lori ~ Do you plant your veggies in the ground or do container gardening? I do supermarket gardening which is not nearly as nice as having everything fresh at home. Running is hard - I think a 10 foot jog would be my max too!
JunieB ~ My DG always had tiger lilys growing around her old farmhouse. They would grow soo tall! She did not have a bouncy tigger to squish them. There were also big forsythia bushes. When DG sold her house in 1984, DM took some of the plants to re-root at our house. They grew huge! 13 years ago I took an armload of cuttings from those same bushes and planted them at my house in SC. The original plants were in MA and had been there since at least the late 60's. I like to think that someday DS will pass the forsythia along
Lookie ~ For some silly reason the theme song to the Love Boat keeps "playing" in my mind. Only it's the Pug Boat! Your kitchen is beautiful! Love the island and all that storage space. Oooh, and there's an owl on the counter! The white-washed fireplace is such a nice design and looks so nice. Are the hard wood floors new too? So pretty! Glad the construction is finally over and you can enjoy your new house!
Sas ~ Sorry you are dealing with unpleasantness. If I find some pics of fat men in their skivvies to post for Loverly would that cheer you up a little? (ssshh, don't tell her! more fun if it's a surprise)
Hello Wren and Feline!
kathindc ~ The wedding sounds so fancy! Will it be in DC? The last wedding I went to was on a farm! The vows were under a big old live oak tree with spanish moss hanging down and the reception was in the barn. It was actually really lovely and was lots of fun. Hope you get some sleep tonight.
Smaarty ~ Beautiful picture of a beautiful couple! The bride's gown is so pretty with all the lace. I'm charmed by the old tymie look of the photo. Forgive me for being unable to resist playing......
And now I'm off to bed........which I keep forgetting to do
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sheps, love my mattress topper. Rolling over with no pain and Dan is sleeping well. Good buy. Thanks for everyone's comments. A topper was a great idea.
Had the dog up ther once. My feet were Hanging off the bed.
I am on the couch sleeping. For 3 days. This is just me, not protocol. When they tol me not to be around pregnant ladies or babies, and pee in a separate bathroom for 2 days after chemo...comes out in you urine and sweat...I took it farther and I put out washable blankets on the couch and sleep alone. I sweat all night,don't want that near hubby. Prob taking it to far, but one less thing to worry my little head over.
But the dog does follow me and sleeps on the couch. She is 15, I think she is fine...is that mean
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Lover your niece looks like a little doll all perfectly wrapped - beautiful.
I did not know Holley - I have just watched her YouTube videos and interviews. What a beautiful lady. Sincere condolences to her family and many friends.
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Love the wedding picture and the reworked wedding picture.
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Lookforward, that is a gorgeous kitchen!!!
Loveroflife, I am not a "baby person" but even I have to comment that Reese is one seriously cute baby.
Shepkitty, My MRI showed something tumor like near my lower spine and the radiologist "cannot rule out LM disease" so that is what this is all about. Further MRI imaging makes it look more like the tumor is NOT in the LM space but I still haven't heard back from the spinal tap...
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Shep, the wedding is in DC. Have lived here and on the same block most of my life. Different house than the one I grew up in. Both DDs live in the city as well and can't imagine living in the suburbs around us. The one interesting thing about her venue is everyone will have to go through a security checkpoint as it is in a government building which when built was designed for both government and private sector use. I wasn't keen to the idea of the venue when they wanted to see it. Luckily, I kept an open mind and was glad of their choice.
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good luck on outcome of furthere tests purple
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Update to the update: CSF: negative for malignancy but elevated protein (which worries ME). They don't want to do another spinal tap right now, just get on with the rest of it (systemic chemo and radiation to some bones). So, "not bad news" is better than bad news, and I like that, but I am still worried because they told me and I've read that spinal taps are only 30% likely to capture malignant cells. So I don't feel that this is definitive. But, neuro onc says no more testing unless I develop symptoms so that's where it is.
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purple, good luck with chemo and rads
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No cute baby pics from me. This is my "boy" Chance. Happy lazy Thursday from us both!0 -
So beat tonight. The heat today just about did me in. Drank so much fluids today I feel like a ๐ซ
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Susan- such a sweet baby.
Loverly- Reese is adorable too. So many cute babies to remind us of some of the sweeter things in life.
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