CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Slow, Gaia, and Sunshine... Thinking of you all today, and hoping for great results!
Shorfi . You sound a lot like me.. Analysing the doctors motives, worrying about everything.. and it's exhausting isn't it.. It's like a full time job. I don't know how my hubby puts up with me either!!
Lbf.. WooHoo.. Great reults.. So happy for you :-)
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Hey Crazies.....
after all the entertaining the last couple of days, I'm exhausted. Still cleaning up after last nights dinner party. I've got info here for Gaia,and everybody else. Dr Suzuki has gone to the conference at UCSF, he left after coffee this morning. We bid him a fond farewell.
So in between washing clay pots and trying to get our work done here's the skinny. I asked him at breakfast this morning about herceptin only for stage IV, his opinion is that it needs a chemo kicker, but he also says everyone does what they feel is best for them. Meanwhile I don't know if you or any other members of our gang who are stage IV have heard of the MBC that is going on at Dana Farber in conjunction with Harvard. Dr/ Nikhil Wagle (Dana Farber) and Dr. Corrie Painter (Harvard) (she's also a cancer patient and so has a dog on this fight) have gotten a big grant to really press Stage iV research. Both of them are twitter friends of mine and I was wondering if any of you guys had heard about this and wanted in. That's them below
anyway I've passed this along to a few of my Stage IV RL friends who've signed up. You can be any place any where and still be part of this.
the #mbcproject is an upcoming @broadinstitute/@DanaFarber research initiative to partner directly w patients w #mbc to accelerate discoveries. for more info either go to @nikhilwagle on twitter or email here info@mbcproject.org
All of us no matter what our stage are involved in this as this disease is really a crapshoot and this is the area that needs the most research.
ok, so much for that. My Indian dinner last night had about 10 courses, all served at once as they do I've been doing this for 25 yrs abut it's still a lot of work. We had several friends over to feast with us including the nurse who hooked me up with everyone at UCSF
of course manditory picture taking before the meal, that's the doc on the left, the nurse and her husband on the right.
some of the food served...
me preparing said food, (I put my hair up when cooking)
some of the produce prepared from our garden
anyway..I'm tired today now I'll drop back and see what's going on with all of you
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Just back from our early morning walk.. Here's a photo of my beloved beach... I go there most days to regain ( or try to anyway) my sanity.!!
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Sula .. .Great photos.. Your dinner party looks amazing :-)
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Lucy- amazing beach! I can see why you go so often. I love a beach with no (other) people!
Sula- as always, a gobsmacking feast with magazine-cover presentation. Very interesting and grateful for the info on the mbc project. It's great to have friends in high places.
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Jackbirdie: cocktails for all, on our comfortable porch. Space for socializing, space for quiet contemplation, but always support when the black clouds descend.
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Sula, that dinner must have been amazing, wow, 20 dishes all at once is a lot of work so yeap, rest is your just deserve
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Lucy,
that is one gorgeous beach! You guys are moving toward spring now right?? I've lived at the beach my whole life both in SF and down in LA I'm more of a mountain person, but that beach looks so lovely and pristine. Is it far from your house?
Jack,
thanks..now it's just a lot of cleanup..and the clay has to be handwashed.
Rainn,
wow, Impressed with the luxury treatment you got. At UCSF I was supposed to have a private room but late in the evening they moved another person in and wound up having to share a room with lady who insisted on sleeping with the door to our room open all night! You know how noisy hospitals are at night? That's why the big heavy room doors...not for her she also liked to sleep with the light on...your lodgings sound like heaven!!! Had somebody pffered me that I'd be like all..
Hope you're feeling better today. Sorry you had to leave the penthouse suite but it's always good to be home.
Jack,
How are you doing today. I love the front porch sign. Where in Oregon are you? I've got cousins in Eugene. I love your garden,and I agree it's a really great feeling watching stuff grow..and then eating it! I just planted Brussels Sprouts and turnips, and more carrots I'm also going to put in shelling peas and rhubarb and more cauliflower. I had to pull the last cauliflower as it got some kind of bug. I've been fortunate enough to have met/know a lot of people because of my profession so that's all it is
Littleblu,
glad everything's ok, and yeah I always hate waiting to be contacted and trying to guess how they'll do it.
Gaia,
thinking all good thoughts for you and your MRI today...btw here's the kit the #mbc guys are sending out
Slow,
good luck with the US today.....are you over at UCLA for that?
Sunshine,
also sending the good vibes your way
I know together we've all got this...excuse the pink
Octo,
Magical thinking? That's been my middle name. I was impossible with the Lakers, I practically wore my underwear on the outside hoping it would bring luck to them. Everything was a "sign" future training for cancer. I had one of my operations last year at UCSF on one of the final days of the World Series..(native san franciscan here) fortunately it was the game the Giants lost or I'd have never been able to get out of the hospital and back over the bridge.
Hope anyone I missed is doing well....I'll be checking in later
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Octo, sounds as if you have a fabulous DH in addition to Gabe! Yeah, magical thinking--we all do it. I loved reading about your SF escape. Sorry about hair and outcome of the game. I must say that my one true splurge was my wig, and before the surgery I rehearsed to be sure that no matter how limited my arm movement was, I could get the wig on my head. Vanity, thy name....
Sula, you have outdone yourself both with food and appropriate pix above. Looking forward to hearing more about what the onc had to say.
There've been so many great pictures in the last day or so: Beppy, loved your hair photo journey.
Katy, I like your garden. And it sounds as if things are in a better place for you--true?
Gaia, hope it went well today. Thought of you yesterday as we drove home through your neighborhood and then through Williamsburg, specifically the Hasidic neighborhoods with everyone turned out in their Yom Kippur finery. As for why I can't get off the couch: we have a soft, deep one. Normally, it's very comfortable, but now, if I'm all the way back in the seat, well, let's just say that arm muscles and abs are really necessary, and I can't get out of it without help. A bit twingy at the moment. (Spell check doesn't like twingy: are we surprised?)
Anyway, I decided to see if I could live without opiods during the day and just take one at bedtime. So I'm maxing out on Tylenol, which is more or less working. Napping and reading trashy magazines and fiction. And, of course, emptying drains and crawling my fingers up the walls. So fun. Wish you all were here. And thanks for all your support!
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Sula.. HaHa.. A very "active " post there.. Yes 1st of September was the start of Spring for us.. The beach is only 5 minute drive.. so close enough to go all the time.. :-)
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Octo girl - is that your name because of your passion for baseball?
Jackiebirdie - I love the guru, I should could not tell which end was coming or going?
SDB beastly good word! , Thanks for the Bees.
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hi kathy7...I had to think about your question for a minute: Octo? Baseball? Huh? OH, you mean, as in 'October Girl'... :-) No, as much of a passion as i have for baseball, I have even more of a passion for scuba diving...and since octopuses are my favorite creatures...(any other divers here can dive into our not so active but still fun scuba divers thread elsewhere on this board). My avatar, by the way, is a world famous dive site, the Blue Hole in Belize, that i visited on my last vacation just before diagnosis (had a great vacation, came home, was lying in bed about two days after we got home, felt the damned lump....). Sigh.
My day was better than last night's tears would have led me to believe. I still have hair. It was thick and short to start with, now it is thinner and short. but still there. When it gets thinner it gets curlier so actually it is kind of cute. double sigh. But at this point the magical thinking is almost gone, and I am just hoping it lasts until my Monday chemo infusion treatment. Why you ask? because MO said it would be gone by then and nothing would make me happier than to prove him wrong!
Sula, the food looks AMAZING! and personally I'd go for cocktails on the porch or the beach..
Hugs to all my sister crazies!
Octogirl
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Still have a minor bit of pain in the neck area. Will have hubby give me a massage tonight and put more liniment on the neck area.
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Sula- I'm 2 hrs from Eugene!
Octo- my BFF (the one I've been talking about) dove the Blue Hole about 7-8 yrs ago. They had underwater camera gear and it was amazing to see.
I feel like I have settled down quite a bit. Now I have to watch for a rapid cycle upward. My shrink told me I was very lucky this time, but was happy how I handled it. We will be checking in together a lot this week.
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Oh my jaded mind, mommyof2, when you mentioned pain in neck and husband In same sentence it let me to think they were one in the same.
Sula, what a spread, very apprapo for our resident chef.
Octo, here's to proving MO wrong on Monday. If not take Gabe with you and keep up the magical thinking.
Lucy, nothing better than wiggling toes in the sand. Envious of the 5 min drive. Mine's about 4.5 hr.
Rainny, sounds like you are recouping well. No awards are give for tolerating pain so stay on top of it. I was finger climbing the wall day 2 postop as well.
Katy, the garden look lush for being near October. Zone 6 here and dry. Only mowing every 2 weeks. More for mulching leaves.
Queenmomcat, I will take that porch offer after work tonight and watch the moon glide across the dark morning sky with a virtual iced beverage in hand.
Slow, sunshine, littleblu and all who were waiting or having stuff done. Still sending out good juju.
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Jen - So happy for you. fat gobule is banished.
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Feeling like I am slowly improving. Don't want anything fast to happen around here. Slow is good. Got a deal on some strawberries as the Farmers Market was closing yesterday and I had to do something with them. Right away! When the going gets tough the tough make jam. Strawberry jam.
L
Had toast for dinner...
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Glad you are feeling so much better, Katy! Littleblueflowers, Happy dance on your God news! Octogirl, You are doing so well with chemo, so much better than I did. Sula, an amazing dinner! Mommy, hope your neck is better. Lucy, What a beautiful beach Rose and others, Thank you for the good wishes for surgery tomorrow.
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Jack,
Those strawberries and that jam looks wonderful!! This has been a really long strawberry season down here and I guess we're not the only ones. I'm making misto cotto right now... Which is grape must. Just finished processing about 5 plus pounds of Grenache grapes now reducing them into a syrup... Anything to avoid washing those clay pots and my Thalis which all need to be hand washed as they don't fit into the dishwasher.
My other cousins are in Portland, not familiar with Oregon... Where are you
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Jack-Katie: Drools. Slowly. Very Slowly. In fact, I'll still be dribbling a bit come the short days of mid-winter when you'll be enjoying that lovely jam, and imagining the heat of summer.
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Jack,
Yes and I certainly understand why dinner was toast... Who wouldn't have toast with all that beautiful jam!!
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that jam is gorgeous!
Octogirl
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Katy..looks so yummy.. I want some.!!
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Hi all-
I'm glad I'm not alone in Crazy Town. I'm sitting in the Waiting Room feeling a little sorry for myself. I'm waiting for test results from a breast MRI I had yesterday late afternoon. It was a routine screening (I'm to alternate between Mammo and MRI). I was okay in the tube till the end when fears of cancer conjoined with claustrophobia. Not fun. But I made it.
I realize that no scan is routine. I have gotten called back after every scan since DX and up till now all has turned out B-9. . Knowing I will probably get called back for this one doesn't/won't make it any easier. Today I've been torturing myself a la Crazy. I've been scrutinizing my Lab results- My LDH was a little high, hanging out with Dr. Google, learning all the bad things it could indicate, and feeling for lumps all day. Before the scan, I had told myself not to do that- HA!
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momwriter- welcome and pull up a chair. I think you're in the right place. Keep us posted, and check in if you feel crazy any time.
🎪🎪🎪🎢🎪🎪🎢🎢🎪
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Hi momwriter, pull up a chair or join us center ring here at the big top called CT. I agree routine my a$$. Every lab they take, every picture they make sends us off one of the many exits. Hope you hear soon.. As in tomorrow and not have to wait the whole weekend. Let the docs worry about the tests. Especially the labs. Your hormone therapy, diet, could be affecting your LDH. Remember that the test is only a snapshot so let the MO paint the big picture.
Welcome!!
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momwriter.. We're all with you.. Hoping you get great results soon.!
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This thread is prolific
I won't attempt a proper hello to everyone but I will say I am inspired by each of you
I'm on my phone in bed. I want:need to sleep
I'm a small of stature person and highly terrified of closed space
Pathetically crying as I imagine tomorrow's MRI
Anyway many have had amazing days
I thank you Sula for checking the stage 4 dx tx and yes I have chosen my path the foods d photos are delicious
Katy I'm breathing and your jam looks like perfect medicine.
Lucy that beach I am dreaming
Rain I hope you are resting and finding some ease. Car rides are a challenge for a bit hugs to you.
Italy thank you for offering support with the sensation reflecting tumor regression it's my hope for sure
LBF so glad for your clear scan.
Octo magical thinking from my heart to yours at this moment for your hair and my spine / pelvis
I love all of you
Scan at 8 am 9/25
Hugs
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Gaia, will have you iin my pocket, sweet slumber!
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Gaia, HUGS from me and from Gabe, I hope to be still dreaming at 8 am NY time, but regardless, you will be in my heart. For the MRI, if it helps, close your eyes and think of me, your dive buddy, holding your hand in the confined space, and reminding you that the most important thing is to breathe, until it is time to come up for air. Lots of love. Let us know how it goes. We will be waiting to hear. xoxox.
Octogirl
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