CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Octo- oh yes! Latkes through the tube! Double order for me please!
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coming right up Katy....with home made applesauce and sour cream!
xoxoxox
Octogirl
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Good Morning Crazies,
We have a few appointments today.
Katy, We are all with you today during your MO appointment. I hope they're able to give you some answers on the liver enzymes. Put your hand in your pocket when you need a squeeze!! Please let us know how it goes when you can.
Cubbie, Good luck today with your RO consultation. We will be holding your hand every step of the way!!
Mulligan, I believe today is your rad simulation?? Hopefully I got that correct. The crazies will be right there with you when they are twisting you in all different directions. Please let us know how it goes!!
For Katy, Cubbie and Mulligan.
Momwriter, I know you have a repeat MRI coming up, but I don't think you gave a date??
I hope I got everyone. If I'm missing any appointment, please don't be shy about calling me out!!
I also have two surgeries on our calendar for this month - Katy, and Notagain. If I'm missing anyone, please let me know about that too. We want to make sure we are able to send plenty of great tasting snacks, love and support through the tubes.
Love each one of you!! Quiet crazies too!!
BBL
Octo, Please pass the latkes my way!! YUM! I'm anxiously waiting by the tube with my catcher's mitt on!!
Edited to add: Anyone hear from Rose?? I wondered how she was doing with the troll. Rose, if you're out there....thinking of you!!
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so here's my update:
So I just had an MO appt. Not great. My liver enzymes had doubled six weeks into the Tamoxifen "journey" . This week's labs showed a 5 X increase over that. So 3-4 times high. The MO thinks it's for sure the Tamoxifen, and I'm to discontinue it immediately. In one month, they'll re-test, and also test my estrogen levels (FH and Estradiol) to see if an AI could be switched to now. If not, ooph may be in the cards. She thinks it was probably contributing seriously to the depression as well.
Also, this pain I've had in the lower left rib area has gotten worse over 3 months, sometimes accompanied by severe cramping type pain across my midsection. It is extremely sharp pain and takes my breath away but doesn't last too long. Since it hadn't resolved over several months, I've been referred for a bone scan next week. Just to rule out, you know.....She thinks it might be a severe muscle spasm with roots in surgical damage. We talked about the other ongoing pain, which seems completely unrelated.
She is happy to continue to support my pain management, at current levels, despite, she said, that many surgeons (including mine, that jackass) deny this kind of pain exists. But she also said she now wants me to understand I may never be pain-free.
So I'm setting up camp here for an extended stay in Crazytown.
You can find me under the bigtop, playing the calliope.
🎪🎪🎪🎪🎪
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We have enough mix-and-match candles from over the years to light the menorah for the portion of Hanukkah during which we’ll be home. (Trusting DS to screw-in the appropriate bulbs on the windowsill electric one in our absence). Family wants latkes--will make them, but for low-carb me it’ll have to be sweet potato (which I made for Thanksgivukkah a couple of years ago), or pull some Dr. Prager’s Broccoli or Zucchini pancakes out of the freezer and saute them in olive oil.
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Hang in Jack....we're here for you................
Grandaughter's birthday at my house on SAturday.....
Oh Stella had a seizure yesterday........2 months without, not real bad, but guess they are not gonna stop......just less frequent....we'll take that.......
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Katy, dang it on all the pains. I have a theory that all the stupid poking and proding is the cause of unexplained pains. I get pains on my left side, same side that has all the stuff done so thinking it is scar tissue, my idea when docs have no reason
just spent time finding a new eye doc and new dentist and now oh joy, I have both new appts set for next week. Least ways they are close to me and not big trip
Ducky, sorry your little one had a seizure, hope she is better today
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Katy, sounds a lot like costochondritis, which is an inflammation of the cartilage that joins the ribs to the sternum. It’s usually brought on by some kind of trauma--like excessive coughing, vomiting, twisting, or holding an awkward position for a long time (as in surgery)--or concomitantly with a lower respiratory infection. It can also be a feature of rheumatoid or osteoarthritis--but is usually temporary.
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my doc actually blamed the rib thing on my asthma, as it did start long ago before the dang cancer thing, so sound like what Sandy is referring to, mine just comes and goes and doc says not to worry
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Hi Katy, I've read that Tamoxifen does cause depression. I'm sure Tomboy will chime in soon. The lower rib pain seems to be a common theme here on BCO. Mine has never gone away since surgery. Makes me wonder what they do to us when we are under the knife. I also had to have a bone scan due to the rib pain and it was normal. I've realized that pain and I must find a way to live together because I don't see the monster leaving any time soon. So sorry you're having to deal with this too. I'll be sending subliminal messages to your liver via your mind over the next month. If you feel something rattling around in there...it's just me. Hang in there sweet sister. Stinkin' cancer. (((((Katy))))
Ducky, I'm sure the party will be great with lots of comic relief!! I just read your last post and it just cracked me up, as usual. haha
Sorry to hear about Stella. I'm glad the seizures are getting less though. That's a great accomplishment considering what's she's been through.Iris, Great to hear you found a new dentist. I hope you like them as well as your last.
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Gaia, crazy neighbor or no, dance on!
Cubbie, yeah, that questionnaire. I find myself wondering if they just use it to peg a patient's mental status for their own records, i.e. sane, mildly loopy, full-on (ahem) crazy. Actually, I did get a response once to the Q I filled out before surgery. So someone was reading and responded to a particular concern.
Katy, my heart aches for you. Courage, sister. Not that you don't have it in abundance. Even so.
Welcome Marijen. Crazytown is the best.
Octo, good luck on the candles. And thanks for the reminder. Yikes. Though we have a lifetime supply of the mismatched variety.
Proud, I hope the new eye doc and dentist work out.
48% done with rads. Woo-hoo!
Went to a meeting with the principal at DS's school. She is wonderful, spent much of the time trying to talk down parents who want more for their kids: more advanced placement classes, more honors, more stress, more competitiveness. Very humane and not at all to be expected in the white-hot center of hyper-involved tiger parenting!
A delightful and relaxing evening to all.
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I still have lumps (seroma) from my LX (my BS says RT probably hardened them up), so I can't check for lumps easily... Makes me nervous since mammos didn't find my BC, but what can ya do but hope they are checking my scans extra-carefully?!?! (Or maybe get some of those pidgeons to look at them!!!???)
Oooh, I was in "Merry Widow" in community theater (Orleans, MA) ages and ages ago. SO much fun. Some great songs, too. Definitely brings back memories.
Ugh... losing or having a purse stolen is horrible. I haven't had that happen in a while, thankfully, but my citi card gets cancelled all the time when they detect "suspicious activity." Of course they have to cover cc fraud, so they err on their side! It's my primary card, so I use it for lots of automatic payments. It takes me a solid DAY to go to all the accounts and change them over--and sometimes days after to get notices from places that tried to use the old account...!!! I just had to do that last month! Amazon, for some reason, still reverts to the old number for Kindle books that I've pre-ordered, even though they charge later (after I've changed my cc numbers!). It's obviously a problem with their software. I wrote them about it, but their solution was to say I needed to call in customer service to get that fixed... and you know how difficult it is going through that! I'm just living with it, because it doesn't come up often enough and I just need to go to their site to make sure it's paid correctly... But it's still annoying that they can't fix it on their end for everyone (since I'm sure it happens all the time).
I really need a new primary credit card... Am thinking of one of the Captial One cards, since their tv ads are so true about other cards being a pain when trying to cash in on mileage (my citi get American miles and seriously, every time I actually DO need to spend double miles to get flights! It's ridiculous. Plus I hear AA's mileage program is getting more and more restrictive... not that it was great to begin with! Never got free checked baggage or anything like that).
It took me days to sign up for a new insurance (and I use friendly brokers to help--it's still a bother). I'm going to lose some doctors since they aren't in my new network, which is a bother. I have several January appts. I'll have to cancel...! It's so disruptive swapping docs all the time. I only had this last insurance for a year before they dropped my plan! I really can't complain, since at least I CAN get insurance (even though it seems ever more limited!). I certainly feel for everyone who has bigger problems since the whole system seems expensive and difficult. More reforms would be nice. Particularly when it comes to costs...!
Oh, geez... My PCP is after me to exercise more, and is that happening when I'm doing all this eating of turkey and stuffing??? No! Probably won't happen until the New Year (if even then, given my record keeping my Resolutions!). Yikes...
Hopefully things will sort themselves out, and that the holidays are fun and not stressful. I wish the same for all of you!
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Sandy, LOL about your armpit having five o'clock shadow.
Queenie, how was the opera?
Katy, I'm sorry you've joined the Crazy Town circus. Who would have thought that Tamoxifen could increase your liver enzymes by so much? The plan to switch to an AI makes sense. I know your MO is being cautious in getting a bone scan, but talk about Stress City! We are here for you.
I had costochondritis when I was a teenager from overdoing it in the weight room at school. It was not fun, and I noticed it was easy to reinjure it if you weren't cautious for a long time afterward. Never having had surgery before, I'm surprised at how long it takes to recover. I still have soreness of my ribs several inches below the surgical area, soreness of the lat muscle on both sides, plus soreness of the back of the arm/armpit on the sentinel node side, and it's been almost two months.
Slow, I have figured the trauma during surgery must be fairly extensive, since when I asked my surgeon about the lat soreness and swelling under my arms, he said, "Oh yeah, we were all around there" even though the incision doesn't extend back that far. I am NOT googling exactly what they did, it will make it hurt worse.
Ducky, sorry Stella is still having troubles.
Rainny, if they are using it to assess mental status then they have a big emoticon on my electronic medical record that says Crazy! Have you seen the documentary Race to Nowhere? I attended a showing of it for parents and teenagers and we had a group discussion afterward about the pressures that are on college-bound teens these days.
April, my credit card has been cancelled twice for security issues. Once the credit card company called me and asked if I was in London (I wish!). Of course, I was not, and they said they didn't think so, since I had bought gas in a small town north of here the day before. Somebody had gotten my card number during one of the security compromises (I think it was the Bank of America one). I also got caught in the Target security compromise as well. I went throught the same thing, have to call everyone who has an autopay, update my Amazon account, etc.
I saw the university RO yesterday (of course I found the lymph node afterward, not before) and talked to my local RO's partner this afternoon. We think we have a plan in place, but the nurse has to talk to my surgeon first. I did ask the RO about my lymph node, and he was not too worried. He told me to talk to my family doctor first. I gave him a call, but he's booked up in the short term since one of his partners left the practice. They have a new nurse practitioner so I'm going to go see her in the morning and see what she thinks of it. Everyone seems to be concerned that I have some type of bacterial infection. I was grateful to have you guys in my pocket, it was a stressful day!
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April-- get thee to a Chase visa amazon card! I have been using them for years, and have never had a problem! You can get one through your Amazon account, and its really easy to see your points from there, and you can apply them instantly to your amazon purchase, or let them stack up! I use it for everything, except small cash purchases, and of course, pay in full each month. I love em.
Katy, yes, Slow is right. The first time I tried tamoxifen, after trying several AI's, I was fine for a while, but then was experiencing crushing depression, something completely alien to my normally blithe nature. So horrible, I stopped getting out of my pajamas, and stopped bathing or washing my face or brushing my teeth. Seriously. Not that often, anyway. My 'wanna do' got up and left. And I was ANGRY!!! About so many things, talking through gritted teeth to those docs , I have them too, that ask about pain, etc, and then don't DO anything about it, yeah. Those are some crazy-ass elevated enzymes.
ChiSandy, I am pretty sure you are right about the costrochondritis. Mine was worse a year later than it was immediately after the surgery. I had a friend, a neighbor of mine, who passed with MBC while I was doing rads. I loved her. I mean, really loved her. She was such a good woman, and you wouldn't believe the mopey bereft feelings in this neighborhood after she died. We ALL loved her... She told me things, as she was an RN until she could no longer work. She told me about the trundleberg position that they put you in for breast surgery, and also that to get to the axilla, how they ALMOST dislocate your arm, that is stupid (edited to say, "strapped" !! ) down and out on it's own board. So they can get to it. Also, I just saw my pain doc for the second time. I guess I am going to do the intracostal branch block, it will take care of all those painful nerve problems that I am having from my quadrantectomy.(something between a lumpy and a mastectomy). It is a shot into the spine, and I told him I will try it once. But I have pain in many places in my body. My onc said last time, I have chemo induced fibromyalgia. My primary doc says no. In anywise, there are parts of me that are in pain every....single... day now, and i don't know how Beppy does it. She is my real life heroine-saint.
I wanted to find out just what had happened to my body from the surgery, so I bought a breast surgery text book. It really helped me understand. I need to read it again, before that shot to my spine.
Beppy, that is the prettiest hair I have ever. Ever EVER seen!!!
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It might be trundelenberg position, I know it's in my copious notes...
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Tomboy, that would explain why I have so much soreness. It's actually sort of a relief, because it explains a lot.
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Tomboy- thanks. It's all sounding so disturbingly familiar.
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(shyly) Just a quick check-in after a long day. A good day, but a long one. The short answer is: loved the opera. Good set design, with a nice transition between Act 2 (Merry Widow's garden) and Act 3 (Chez Maxime). But perhaps more importantly for me: Thomas Hampson and Renee Fleming as the lead characters. Experienced performers, both, and gifted (to put it mildly) at what they do....AND have worked together quite a bit over their careers.
The Merry Widow's a pretty lightweight opera, to be sure, but unlike Die Fledermaus, which is straight foam, The Merry Widow does have a central will they-won't they romance going. For that to be plausible, there has to be a chemistry between the performers. Which Hampson and Fleming do quite nicely, at least on stage. (Dunno how they feel about each other in private life.)
I'd seen them together a few years ago in the Chicago Lyric's La Traviata, though there more a truly antagonistic relationship (he played Germont pere, she played Violetta). But the scene in which Giorgio Germont begged Violetta to give up her relationship with his son almost broke my heart....and that's the opera which Certain Husbands ruined for me with a Monty Python reference during Violetta's climactic aria. As a whole, so not taking it seriously! But with lesser performers, dog knows what I'd have thought.
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Fleming IS amazing, isn’t she? One of these days we have to get to the Lyric for an actual opera. We used to have a CSO subscription, but DH’s brutal work & call schedule made it a crapshoot as to whether we’d be able to make a performance. We had to trade tickets like crazy. And the CSO had a charming habit of making whatever series one chose have at least one teeth-gratingly atonal “music as math” premiere--sort of like negociants making wine merchants buy several cases of off-vintage plonk in order to get one case of the good stuff.
Oh, those mental status evaluations! Third time DH had to go to the ER at St. Francis in the middle of the night, the triage nurse asked him all the usual dumb questions. She got to “Do you ever feel suicidal?” DH answered “Suicidal? No. Homicidal...."
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I saw the nurse practitioner this morning. She is sending me for an ultrasound of the bump under my jaw. She's not sure what it is. I'm waiting in the imaging center right now. So scared.
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Sandy, love the response by your husband. think I will use that one myself
so in finding a new dentist they asked me to fill out one of those endless online questionaires. think they are just for the heck and meaningless. Anyway, I am going once to see if I like them and taking advantage of a special new patient offer. Do I really remember what year I had some of the stuff they ask? I also do not like posting all of that to an online location, am I weird or not?
got my chiro visit today, have to confess the chiro and all my twice daily stretching seems to have really helped with the back pain so gonna keep it up
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Thos questions blow my mind.......
I feel like writing.................You really don't want to know........!!!!!!!!!!!!!!!!!!!!!!!!!!.......j
Not to mention the fact I can't remember what I ate for dinner last night, and they want me to remember what date I had each and every surgery.......................and what does that have to do with me getting my teeth cleaned...............LO
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ducky, now I feel better! dang but I the only dates I remember are the dang lumpies and rads dates, and of course when I ended the stupid aromasin stuff
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Me too, but they ask for shit that goes back to when I came out of the womb..........REALLY............
Its as I call it "HIPPASHIT"...................
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Just got done making 7 large bags of whole green beans in garlic, olive oil, butter, and tomato sauce for my grandaughters birthday tomorrow night...........smells heavenly................
Ok who just said why 7 large bags...................Hey, my family loves beans...........LOL
Next is the homemade lb cake, which is also the big hit......I'm tired of making it, but erveryone loves it.
Cleaned the hovel yesterday........why I have no clue, cause trust me it will have to be cleaned again the next day.........crowds always make small messes............26 people will be here, and tha tis not both sides of the fmaily complete...........some can't make it..........
You all know Makayla......she is going to be 15........
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Makayla in the rough........she pitches for her High School softball team, and plays 1st base.......LOL........
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I have a big, but normal, lymph node.
Ducky and Iris, I hear ya, I can't remember that stuff, either.
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yay Cubbie!!! So glad it was nothing!
Octogirl
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Good Morning Crazies!!
Tomboy, You are just a million kinds of wonderful. I have to admit though....I feel like I got off pretty easy hearing about what you all have to go through with the AI's and pain from SNB's. Being TN and HER2, I don't have to deal with AI's and as you all know, I chose NOT to have a SNB. I really didn't want to know my true stage....it wouldn't have changed my treatment plan.
Katy, You've been on my mind all night. I just want you to know you're very loved here in Crazy Town. I also want to give you these flowers to brighten your day along with an extra squeeze.
I know you're going to be feeling better very soon. Just hang on - your crazies have your back.
Cubbie, I'm am so thrilled for you!! In fact, I'm doing a happy dance!!
I'm sorry I wasn't around this morning when you said you were at the appointment. You may want to consider a texting buddy!! Tomboy and I typically text each other when we are having tests. It's a good distraction and it's a way to get out our stress. We mostly try and make each other laugh with really silly things. I highly recommend doing that if you go alone to these appointments. Please let me know if you'd like one.
That reminds me of a story. I had an appointment for a test - I think it was an US of the breast. I can't recall which test right now. My appointment was in the general area of a BCO sister, so we decided to have lunch together. She knew of a good pizza place by my facility, so she said she would just come with me to my appointment. Well there I was waiting to be called, and I actually started having a panic attack. I didn't realize just how nervous I was about having the test. I remember looking over at her and being so grateful that she was there with me. She didn't know I was having a panic attack - I've gotten pretty good at hiding them in public. It's only at home that I truly let my crazy out. In any case, her being there made all the difference for me. I seem to recall it was just a routine test and I wasn't even concerned when I knew I had to go. I told her much later about how anxious I got and how thankful I was that she was there with me. Sometimes it just helps to know that someone cares. Thanks again 2TA - you're awesome and I love you to pieces!!! So maybe we should start texting buddies here in Crazy Town?!? It's such a simple thing, but makes all the difference when you need that extra bit of support.
Ducky, I know that party will be wonderful. I can't believe how fast Makayla is growing. Just a few short years ago she looked so young. She is turning into a stunning young woman. You must be so proud.
Iris, I can't believe they need so much information. That's so annoying!! Happy to hear you will keeping up with the chiro visits. I'm so glad it's working!!
Chi, hahaha.....what a great response from your DH!
Queen, I loved your critique of the opera.
Well crazies, today is my two year beast-free-versary. Two years ago today I had those little buggers cut out of me.You can see my very bald head under that highly fashionable cap. Not sure what was in the peace pipe, but I sure was high as a kite!! haha
Not much of the TN tumor left, but that HER2 tumor sure was stubborn. I'm so grateful to be alive....pain and all!!! I just know that each day will get better and better!!!
Much love to all....quiet crazies too!!0 -
Cubbie: phew! ten thousand sighs of relief on your behalf.
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