CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Molly I am sorry this has been a struggle, and hope you feel better soon. I have no great advice, other than that, as I know I've said, walking helps me.
I will admit that nine pm is my normal bedtime...I get home from work, cook dinner on a good night, watch my favorite TV shows and if I am lucky I manage to stay awake through the Daily Show. If I do, I head to bed and read for half an hour or so. That's it, unless I am traveling. Pretty boring. (I walk in the am or at noon).
Last night I slept nine hours. I seem to be over the insomnia stage of the Arimidex.
But I need to be more active, as I can feel myself slipping into the blues more than I ever did. It is all that CT stuff...Mostly, I need to get out more. I am contemplating retirement in a year or two but don't want to spend whatever time I have left (there goes that CT thinking) watching TV! I signed up for yoga Monday nights beginning next week....it's a start...
Hugs,
Octogirl
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oh yeah, and count me in for SoCal meetups....will be in SoCal for a week in March, by the way.... Anyone want to plan anything?
Octogirl
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Molly- so sorry you are feeling bad. Hopefully some of the SEs will diminish as your body adjusts? Is that still possible?
Octo- yay for a full night's sleep! Great news
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Good Morning Crazies,
hahahahaha QV!! The "rotating" mayor gave me visions of an old Linda Blair movie.
M0mmy, I'm sure your speech will be great. Sorry to hear about your teeth. Have you ever tried Sensodyne toothpaste? It is supposed to help with sensitivity. Hugs back to you!
Cubbie, I've always thought the symptoms were from the RA or a pinched nerve. Unfortunately, my Rheumatologist was on vacation when this all came down. It's very difficult to get an appointment with her because she is the only Rheumatologist that serves this area, which is why I started with my PCP. I have a call in to my Rheumatologist in the OC that has followed me for over 30 years. I typically see her once a year because she isn't covered under my insurance. My PCP is the one who thought I had a stroke after her examination, and she referred me to the Neurologist. I got a return email from the Neurologist yesterday, and he said my symptoms are not caused by CIPN and the MRI definitely ruled out a stroke, MS, ALS and a tumor. He also told me it's not caused by my RA when I was in his office. So I guess NOTHING is causing my facial numbness and slight slur, and NOTHING caused my initial event of full left sided numbness. I'm quite frustrated at this point. The one good thing that came out of the MRI is the knowledge that I DON'T have ALS, which was my biggest fear. I basically went through the same thing with the swollen glands and neck. They all acknowledge the glands and neck are swollen, but can't tell me why. I was passed from one specialty to the next. Now I'm a slurring, numb blow fish - WHATEVER!!
Eggroll, Men have it pretty easy when they travel, they just whip out a cup. So not fair!! I'm glad you made it home in time.
Molly, I'm sorry to hear you're struggling with the Anastrozole. It always amazes me how some can struggle so badly and others have no problems. That seems to be the same for all aspects of treatment. I hope it starts to get better for you.
Octogirl, I think you're right about staying active. I think our CT feelings can really take hold when we aren't sufficiently distracted. I try to move as much as possible in between my flares. Yay!! Yoga will be so good for you!!
YES! We will plan something for when you're here. Do you know the dates yet? What city you'll be in? I'm open to anything that's convenient for all. We can have a get together at my home, or all meet somewhere. I'm open to most everything.
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Slow, sending you a PM regarding dates...
That is so unfair that they can't give you an answer. Have you tried calling RA and the insurance to say that you need a referral for a second opinion even if out of area? (I mean, surely there must be someone at UCSD or UCLA who could address this?( But who knows, maybe that is the UC centric girl in me saying that...) I am glad your PCP referred you for the MRI. Obviously a relief about the ALS, but in addition, if it had been a stroke, early detection is the key..
Hugs!
Octogirl
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I am up for a March meeting! Thank you all for understanding. It sucks to feel bad and my DH always tells me it is a good thing I didn't need chemo. Slow, I sure hope they figure it out for you although it is great news that it is not a stroke or ALS. I suppose a TIA would show on the MRI as well?
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Great to see you back here, Slow! That is a lovely quilt! JAN and Katy are amazing!
I'm up for a March get together!
I've been switched from letrozole to exemestane and now I'm shedding hair, not sleeping, getting fatter and am moody. Maybe I should switch back?
And my bad girl hurts. I thought it was the new bra, so I went back to the old style bra. It seems like there is thickening on the under side....also near my nipple. I told my DH that I thought my nipple might fall off. He really thinks I'm crazy now! LOL
Happy weekend everyone!
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PoppyK! I was just thinking about you this morning when I saw this mug on Zulily. They actually have a lot of poppy items today.
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Slow - did you see the link I posted regarding migraines? After a neurologist ruled out other causes, the link is what I was DX with. It happened 2 months in a row, and they initially thought TIA. Might be worth a look
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Thanks for the sweet comments on the quilt. And I'm pretty sure I could make a March gathering of crazies in or near LA or SD.
Octo I agree about quality of care at UC hospitals. I get most of my care at UCLA and all of my eye care there. Worth my 250 mile drive.
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OOOOO00oooooo00000ooooOOOOOH! I want to come! Maybe Sula would like that too? Hello? Sula?
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Slow, so good to hear from you again, rats on the vagueness of the doctors, hate that
Insurance issues seem to have cleared up and due to changes at my doc office
Both my pcd and the spine doc say I should not get shots in my back at this point
Confused as some pals seem to think I should
Feel on the way into my chiro office yesterday so now have charming bruises on my knees
Gonna try some physical therpy again to strengthen my weak legs not understanding why weakness cept doc said it was a progression of stenosis,
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Crap, Iris, hate that that is happening to you
Miss Mayor! did I say how happy I am to see you here, sharing your awesome self with everyone? You are a day brightener! I actually am beginning to think that , no matter how much I love everyone here, that you are the music that calms this savage breast! So there!
JANSoixante-neuf, I am really thinking of transferring my care to UCLA. Or USC Keck School of medicine. A neighbor, who's wife I really loved, she was really a stone cold gem, (she died of MBC, how I miss her.. She died when I was having rads) well he is an emergency room doc, and also a doc sans frontier, says it is THE place he would go, and she went, too, until she found her last onc , one that was affiliated with a different place, she went because it's where her beloved RN nurse transferred to. I really need to get there in the next few weeks, so I can stop complaining about where I do go!
Who else?? Robin, you aren't THAT far!!
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Oh, yeah! Forgot! KiwiKatMom posted this on another thread, she took it herself! I asked permish ,but I don't think she will mind:
She said that it's a panda alpaca!
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SlowDeep: cripes, so it really is a "We don't know. Run along now." Or rather, "We've ruled out all the things we can think of to test for. Run along now." I mean, it is beyond lovely that they could rule out the variants on ALS--that's a nightmare and a half--but nobody had any suggestions?
General question: where's the meeting to be? (probably somewhere too far for me to travel just now)
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Glad to see you Slow!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Tomboy - true....I am not that far.
Cute alpaca!
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I'm up for a March meeting Octo, but not sure where you are going to be. My grandkids watch a cartoon called Octonauts, and every time they watch it i think of you!
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Slow,
it's so so so good to see you back here again! Glad there's no ALS and I hope you get to the bottom of what caused the problem soon. We've ( even though I've been among the missing the last couple of days) missed you and you mayoring tons!
Ducky,
Love that picture of Bobby on his sled, I'm glad to see someone got some fun out of the snow. Sorry to hear your daughter is having pain, I hope she gets some answers soon, as to the house, I never heard of anyone doing that! That sectional issue would make me nuts.
Shorfi,
Take a break then come back when you feel like it... CrazyTown is always open 24/7 which is why we love it.
Poppy,
Great Paris pictures and you son looks great in his uniform. Always a sucker for a guy in a band!
Jack,
Whew... What a story. I've never had that happen to me but we have a similar "last seen on" kind of beach near us, Goat Rock. Know I know how that happens after reading you. Between Goat Rock and Abalone divers, that beach takes quite a toll. So glad you made it through that even if you did wind up at our "party"
Octo,
Glad the hair is coming back. Going commando? I always thought that was the other end!!!! Anyway I've got hair on my head but the carpet fell out again if you get my drift... Anyone else have this happen?
Love to Tom, Gaia, all the other crazies (can't name you all)
I finished treatment, and am having surgery on Wed to remove the port. I then have to have the ovaries out.... Colonoscopy... And having some sort of nerve issues again from the Mx site.. Last 2 times they gave me a shot at UCSF it may be someoif the nerves regenerating since I've been numb in that area since the surgery last year. Sooooo... I'll be paying Dr Esserman another visit.
We've been working hard our kits sold out, the two stores carrying them have restocked, we just did a magazine interview about the Spuce kits and are getting the online store set up....plus getting recipes done for the restaurant...you asked for good porn??? Here's a Gluten free and vegan S'more
And some rose vanilla #vegan macarons
I have chocolate # vegan macarons in the oven right now and also just fell "up" the stairs going into the laundry room from the garage and wound up sprawled, having to yell for my husband. Luckily just a bunch of bruises.
Ok... That's it for me....I'll keep reading all the stuff I know I missed. Later Crazies!
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Well enjoyed one of my last hot showers for the rest of winter before 4 Taxotere start next week. I am going to cold cap so fingers crossed. I was however disappointed but not discouraged that my counselor informed me that I won't be her star case no matter how well I do (local axillary node recurrence 10/14 er+).... She's got a 21 noder and her leader a 33/38 nodes gal who is 10 years out. I do think the hysterectomy, rads (didn't have them last time) and Arimidix will do me right. I am still hanging out with the CRAZIES tho because one of my two oncs is presenting my case to the tumor board on Tuesday to see if they want to swap Taxotere for some other damn chemo at the eleventh hour. With $300 in cold caps plus more supplies to pick up this weekend... If they try to stick me with some wussy ass oral do nothing drug I am going to be pissed!
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When we went through Monterey I thought "Octogirl is near!"
We are going to come back through in December...
Assuming I haven't annoyed you too much by then would love to meet you personally.
I found out my biggest client isn't giving me work until March. I only asked for January off. So I was a little shocked. I wish they would talk to me more. It's an ongoing issue. So I'm just a little worried about money, but maybe this is my opportunity to make a change. Got the approval to teach a German class at the local community college. Minutes after I finished celebrating, another client asked me to come out on one of those weeks I'll be teaching. So frustrating getting double-booked. But I know it will work out.
Best moment of the day: Watching a fawn bounce past me again and again, cavorting around in a circle, and then on one of those laps, he scared a whole branch full of Monarch's into the sky, and it made a beautiful orange cloud above its head. Octogirl, this is in Pacific Grove. Check it out if you haven't already!
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Good Evening Crazies!! Ummmm....scratch that....Good Morning Crazies!!! Only a true crazy would be posting this late on a Friday night/Saturday morning.
Lucy, Any chance for a trip to the US in March?????? <Crossing fingers>
Octogril, I sent you a PM regarding second opinions at my facility.
Molly, I'm very happy that you didn't need chemo. I thought about asking about a TIA, but he really stressed that he didn't think my problem was neurologic. At this point I think he would have the opinion that I'm nuttier than a fruitcake if I emailed him again - although, I must admit it was tempting. haha I'm glad you're on board for the get together!!
Poppy, Yes!! Jan and Katy ARE amazing!! I had to laugh at your post. I'm right there with you on all of those SE's for the exception of the thinning hair. I'm not even on one of those nasty AI's!! My DH has learned to tune me out. I've got thickening in the same place!! I'm going to make and patent a cancer dartboard with all the crappy things about BC. Wigs, AI's, thickening, random symptoms, etc. We can set it up in the Crazy Town Hall and get out all of our frustration. Just kidding about the patent.
Robin, I didn't see the link. but I will go back and look for it. Oddly enough, I did get a huge headache after my initial event. It felt like someone was stabbing me on the side of my head with an ice pick. Thank you! I will definitely ask about migraines. I hope you're able to come to our get together!!
JAN, That would be so awesome if you could come too!! Can I bring my ultra cool quilt????
Iris, Oh no!! I hope you don't hurt too much from your fall. VERY glad to hear your insurance issues have cleared. There is nothing worse than being in pain and having to make those long, drawn out calls begging for your benefits. It's got to be such a difficult decision on whether to get the shots or not. I wish I had some great insight, but I'm horrible at giving good opinions about medical issues.
Tomboy, I'm VERY happy you're sharing YOUR awesome self as well!!!
Ducky, Any chance of you and Iris hoping on a plane for California in March??? You can bring your pilot. Sending extra hugs to you this weekend. You're ALMOST to the finish line. Love you!!
QV, I think I'm being released back to my PCP. Ping pong anyone??? Maybe Ducky can pick you up on the way!! I'm sure her pilot wouldn't mind. Although they may prefer to fly....errrrr....ALONE.
M0mmy, That feeling is very much mutual. I'm ALWAYS so glad to see you too!!
Italy!!! I really hope you can come. It's BYOCO!!! I know you'll figure that one out. haha Did you know you were the very first poster on this thread. I think that deserves some kind of plaque in the Crazy Town hall.Oh goodness.....auto correct tried to change plaque to plague. You definitely don't want the plague!!
Sula!! There you are. I've had visions of you buried under all of your kits, hair all messed up, paper cuts from the boxes. Great news that they have taken off so well, but I'm really not surprised. Ovaries out, colonoscopy, nerve pain....good grief!! I'll have to add those items to the Crazy Town dartboard. I'm carpetless as well - just a few carpet fibers. The things we share in Crazy Town. haha It's been that way since chemo. Never really grew back. I wish I could say that about my carpet legs - it's the Italian curse. Food porn!! I knew you wouldn't disappoint. Now my night is complete!!!!! Scrumptious!!
7, You deleted your post. You ok??? Just checking on you.Thinking of you!!
Eggroll, Totally sucks about the delay in work.Opportunity to make a change - good thinking!! Thanks for sharing your moment of the day. It sounded so peaceful. Let us know if you'll be in SO CA in March.
Gingerbrew, Hope all went well with the brain MRI today. I hope you don't have to wait too long for your results. Sending good thoughts your way.
Off to bed. Sleep well crazies...quiet crazies too!!
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Morning all!
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Morning Mommy!
Slow - the link is on page 199. If you can't find it, let me know and I can repost.
March in CA sounds wonderful! 6 - 8 hour drive depending on traffic and location! Not too bad....
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SlowDeep: yeah, I don't think there's room for a third in that cockpit with Ducky and her friend.
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Slow.. I really, really wish I could come 😞
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Slow, it's so nice to see you out here again!
Ladies, I can't tell you how much yo mean to me! Really! It's been a really rough, hard week. To be able to come out here and read your posts really does feel like dropping into a dear friends' kitchen and pulling up a chair. Y'all are wonderful!
I'm not going to try and shout out to everyone right now, as I know I'll miss someone. Please know that all of you are on my list, and I pray for each and every one of you!
For now, I'm taking up residence in the corner of the cafe with a continuous mocha valium double whipped latte with Ativan sprinkles
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JerseyGirl... Hi.. Hmm.
Actually I think we need a CT coffee shop where we can all hang out.. You know, somewhere for us all to Go.. I love your choice of latte :-) I'll order a few of those , with Ativan sprinkles as well 😱
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I second the motion of a CT coffee shop. Can we combine that with a tea room?
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7 - just letting you know I'm thinking of you. Sending a hug. A big one.
Jersey- hugs to you too. I got such a visual from your "pulling up a chair in a friend's kitchen" . Just perfect. I am struggling a bit myself at the moment, being a bit quietly crazy, but reading along helps me to believe two things. That I am not alone, and that it will get better. Because our group is so large and diverse, there are always Crazies who are feeling ok and funny and lift me up, and others who I realize are down like me. And though I despair at that idea, not wanting anyone to feel bad, there is a comfort in knowing that what goes down must come up!
Eggroll- i have seen that Monarch habitat in PG. just amazing. I can imagine the huge orange cloud.
And what a memory you brought back when you mentioned the elephant seals. Once, maybe 15-20 years ago my mom and I were on a coastal boondoggle, on a hunt for the sound of waves, and we stopped there. It was too amazing that at the time there were no fences, no admission tickets, no tour guides, no vendors selling popcorn. Though I can see how a portaloo would be handy. I was just thrilled to witness such majestic nature unfettered by human interference. It remains one of those crystal clear vignettes in my memory, extra special because it was just my mom and I, as adult friends, together.
QMC- there is something I love about pouring loose tea, or having it poured, out of a vintage china pot, through a pretty strainer, into delicate cups. I have a completely mismatched set, which I love. And though I drink more coffee, nothing matches the comfortable elegance of "tea". Tea is always so much more than just tea. And it of course belongs in our CrazyTown establishment. Great suggestion
Well that's all I can muster from my weakened position in the foxhole at the moment.
Love to all of you. I always read, and pause, and think good thoughts for all of you, whether or not I come up with something individual to say. It's my weakness, not yours. I know you all understand.
🎪🎪🎪🎪🎪
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