CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Aw, Anne took off her pretty clothes when she got home. She is in a nightgown. I don't have a recent picture to send one, but I will snap one with my phone soon.
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Ducky: your kitchen set is really cool! I hope you find a place for it. And damn those kids for not helping to move your furniture! Or for showing you the shore house...
Katy: you know it isn't whining. I am hoping for sunshine and a day on the beach with you and Jack. Wish I could join you. But will be in your pocket..after all, if we can be in each others' pockets for the shit, why not for the good stuff too?
DF: outstanding news for Anne/Supermom!
and thanks to all of you for your supportive thoughts about my hair. Grandkids just showed up :-) so more later..
xoxo
Octogirl0 -
I'll be glad when it is over........
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decision freak.... Lovey Dovey Lovey Dovey all the time.... Ooheee baby I sure show you a good time. More like Lovey Dovey none of the time... Til that Ativan and ambien kick in baby... You have your self a good time...
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hey there Crazies,
Happy Happy Merry Merry to everyone!! I have sooooo much catching up on what everyone is up to and who's new and all. Our week long houseguest just left a few hours ago and I am exhausted. I've not stopped cooking since last Monday. Anyway, my husbands birthday is the 29th , his party is a New Years Eve dinner... So I get a day off... I think. Anyway you are all looking good , I'm going to drop back and see what's up. Just wanted to say I'm alive and kicking and hanging in there out in Sonoma
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7of9, I'm sorry the news was not better. We will be in your pocket, hoping for good scans.
I am still all sniffly sneezy. I had to cancel my appointment with the MO at the university because the weather was too dangerous to travel here, and I couldn't travel before the storm and stay overnight in the university town because I needed to be here for radiation in the morning. The university can't see me again until March. They are going to see if they can get me in any sooner. I suppose I can still try the Tamoxifen prescription from my local MO and wait until March to get a second opinion and possibly switch to the university MO at that point. I just don't know about staying long term with my local MO. I just don't feel comfortable talking to him about my concerns. It's nothing personal.
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Hello All you Beautiful Crazies
I hope everyone is finding even keel after whatever this holiday season brought your way.
Ducky you don't need to apologize for having ALL of your feelings here; I think that's exactly what you would share with all of us.
Octo- The hair panic, I can only imagine. I can't speak from experience, but the ladies here have your back with their real life encounters. breathe as much as you can. and think of mama cocha embracing you in a few days time!
Rain- Jerusalem is a good volume! Enjoy it.
Katy The holiday proper is through. Keep being gentle with all the waves. Even going off the Tamox creates a hormonal shift and this is still a period of adjustment. Love and hugs to you.
Tomboy love your tree
Slow the train! I love your train.
Chi Great pics and hope you cold is better. Yours too Cubbie
DF that's great news about Ani. I am currently on TAmox and H for ST IV bone mets. It's such a mystery what works and what doesn't.
On that note I have decided to consult with a RO. Will have a meeting to explore what options could be either now or when needed with re to radiation for pain management. Lots to review. going slow is important to me Think I found a place I am going to like. Personal service and human touch are important. I'll keep you all posted. gonna do consult on Thursday. will recap and review bunch of points with MO on monday in my appointment. So suddenly January feels in 'flux' but I'm glad I made these calls today.
OK I am sending love to all. Hopefully my head will feel more straight after I have this meeting on Thursday.
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Thanks Gaia.......hope you doing well..hugs.
Sula was just going to ask where the hell you were.........was beginning to worry......glad your ok..........just a bit tired.......hugs
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I can whine longer and louder than anyone I know. If you have a year available, katy, I have pent up whining to do on many areas of my life.
I am so obsessive I drive my family crazy. What I obsess about appears random. Being treated unfairly will trigger an obsessive event that may last for weeks or months. I don't obsess much about practical matters.
I worry about everything under the sun.
If I have something on my mind, it drives me crazy if someone tries to shut me up.
It is not easy to shut me up.
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Okay, folks, tonight we leave the snow and ice behind and continue our trip to sunny Sicily. Next stop, Trapani and points south.
Cathedral dome, Trapani (from our ship):
Downtown Trapani, from the ship:
Exterior, Cathedrale di Santa Maria, Monreale (started in the 10th century, finished between the 13th & 14th):
Former church, now the Diocesan Museum, Monreale. (Note the street sign on the left--every Italian city we visited has a street named after king Victor Emanuel, who consolidated a crazy-quilt of city-states into a unified Italy):
Apse, Cathedrale di Santa Maria, Monreale. Note the hodgepodge of architectural styles, the result of successive regimes and then the reconstruction of the interior after both natural disasters and WWII.
Detail over altar (sorry for the focus problems due to extreme tele mode). The windows are not stained glass (the mountaintop Sicilian summer sun through glass could actually cause wood to ignite, or at least worshipers to faint) but rather very thin yet translucent alabaster!
Detail of mosaics, which depicted Bible stories. This was the only Biblical education for the masses, who were illiterate--the only Bibles available were hand-scribed and available only to clergy:
East-meets-west architecture in microcosm: marble Corinthian column topped with Byzantine capital beneath Moorish tile:
Side chapel:
Lest we think ecumenicism was a 20th-century invention:
Detail, altarpiece (made of silver mined in Mexico during Conquistador era, when Sicily was ruled by Aragon):
Okay, let's go back outside! Looking up the mountainside from Piazza Santa Maria, Monreale (note the Renaissance-era cellular phone towers upper right):
Cloister and fountain, center of Monreale:
On to Palermo. As grand as this is, it's not the cathedral, just one of the many churches & a cloister in the Old Town:
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More Palermo. Sorry for the shadows (tricky getting good shots while keeping up with the tour group). Little story behind this shot. City of Palermo decided its church, across from City Hall, needed a grand fountain but didn’t have the dough to build one de novo. However, the city of Firenze (Florence) had one they were willing to part with for a song, so it was a deal. But once Palermo moved and erected the fountain--sculptures and all--people noticed that the statues, all of Roman gods & goddesses, had one thing in common: NUDITY! (Enlarge the photo, brighten your screen and you’ll see it). Now ordinarily, this wouldn’t have bothered Palermo’s residents--Sicily is a lot more laid-back than the North. Except for one thing. See the building wings at the left? Those rectangular top windows look out from the nuns’ bedrooms in the cloister! Nothing like the sun-washed sight of a butt-naked Cupid cavorting with Bacchus to get one in the mood for devotions at dawn....
City Hall, Palermo--across the street from the Fountain of Fun. Fortunately, the bureaucrats’ office windows are on the other facade, otherwise nothing would get done. (Okay, this being Palermo, not much gets done anyway. "It is what it is and it’ll happen when it happens" (I’d say que sera, sera, but that’s Spanglish, not Italian)...
One of the four set-back corners of the Piazza della Quattro Stagione (Four Seasons); I think this one’s Primavera (pretty big car for Palermo, considering most parking spaces are marked for cars not much bigger than a Smart for Two):
Campanile of the Cathedral of Palermo. Note Venetian & Moorish influences:
Is this pooch a parishioner? Nah, just soliciting belly-rubs. (Seeing as how he’s a pit bull, I passed).
Main entrance & steeple of the Cathedral of Palermo (patron saint is Rosalie). More elements of Gothic on this side:
Closer detail from another angle:
Cathedral dome:
Entrance:
Side chapel:
Detail, side chapel:
Another side chapel, holding a relic:
Yet another side chapel:
Get some rest--we head to Sardinia tomorrow. Buona sera!
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Hi Everyone-
I wanted to say hi to everyone and wishing everyone in CT a happy new year. Grateful that SDB and Tomboy birthed this site. I find it too hard to keep up with all the posts and respond but I do read what I can and really appreciate the connections and sharing and support among you wonderful wonderful people.
There are two many specific people and stories to mention. But I did want to say-
7- I'm holding you in my heart. So sorry about the recurrence (shit, shit shit). It sounds like you're ready to do what needs to be done to maintain stability for your 6.5 year old and to kick cancer's ass once again.
I've had a few crazy moments recently- for instance, a cold led to a weekend of a brain tumor (pressure/dizziness) that fortunately has passed. The minute that passed an old muscle ache reappeared. And so it goes. It is such low level anxiety usually I don't even know it's there- but I try to out it because I think anxiety takes away from my wholeness of self and if I out it I can usually deal with it. My therapist gave me strict orders to not borrow trouble, but sometimes that's just plain hard.
Next week I have a follow up MRI chest wall scan for a birads2 "irregular enhancing region in the right pectorals muscle with internal focus of susceptibility." I put off the scan till after the holidays- but now I have to deal with it. Here's hoping it's just scarring from the mastoplexy (lift) that I had last spring. And here's hoping I can deal with the claustrophobia of that damned machine.
Sending good wishes to all!
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hi again all: back after a rousing but deliberately shortened game of Monopoly with hubby and Dear Granddaughter. DD and family are spending the night on their way back to LA from the Tahoe area. It was a successful trip: DGD tried skiing for the first time and says she will keep with it (yay: even though my winter sports activity is mostly snowshoeing these days, it makes me happy to see her interested in downhill skiing since i enjoyed it so much as a child and young(er) adult.....)
I can see how it is hard to keep up with this group, so much even after just a few hours...
Hi to Sula, glad to see you back! and hi momwriter: we will be in your pocket for the chest scan. and ditto for you Gaia as you seek answers from your MO...and Cubbie: I hope you can get seen before March!
ChiSandy: I love your pics! Hoping you didn't already post Sardinia pics that I missed, and hoping you do post some. I recall you were there at least one day, and Sardinia is high on my bucket list. (actually, all of Italy should be: I've travelled on every continent except Antartica, and still have somehow managed never to make it to Italy. I know, I know. When I go, Sardinia will be part of the journey!).
Thanks again to all of you for encouragement about my hair. Here's the thing: you know how we are all told to listen to our gut. Well, I KNOW it is very early days yet, but my gut is convinced that that my hair isn't coming back. I really believe it is gone forever. So, I am telling you this for one simple reason: assuming it does come back, you all can say 'I told you so' and I will have to officially admit that I am crazy....
on a more positive note: I am half done with rads, and at my appointment today RO confirmed what I could have told him myself: so far, so good. No problems or really any SEs. Knock on wood.
it will be a busy few more days: breakfast with the grands, DD and SIL, and then I need to buckle down and do a bit of work, before heading over to the ocean on Thursday afternoon, with plans to jump in on Friday. Woohoo.
Love to all
Octogirl
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Fear not, Octo--we (virtually) land in Cagliari tomorrow. Combination of chest cold, lousy weather and cough suppressant has me too drowsy to flip through the thumbnails and post tonight. Since I slept most of Sunday I got up early (for me) today and didn’t nap. Have a ton of errands to run tomorrow, and I hope the streets and sidewalks will oblige. DH just got home and reports that he got stuck in the slush twice and nearly had to be towed out. (His Fusion Hybrid is front-wheel drive but he doesn’t feel comfortable enough driving my AWD Outback to take it tomorrow, even though I can use Uber or catch a ride with my housekeeper--assuming she doesn’t get stuck driving in from the W. Side). Our alley never gets plowed, and when water accumulates on slush over ice, things can get, uh, interesting (as in the ancient Chinese curse “may you live in interesting times”).
As to your hair, remember: a watched pot never boils.
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Octogirl, congratulations on the towel and thoughtful son... that was wonderful.
I'm way behind on the posts, 74 unread posts, it's going to be something to catch up with you all. I have been staying off the computer to try to rest my arm, typing seems to make a nerve burn from my wrist to my armpit since the lymphnode surgery.
I just finished my 8th radiation "zap" and it feels like there is a toothache in my boob and it's pretty warm. But it is pretty much the same area that turned red before it started, not the whole breast, so everyone says it is fine. My radiation oncologist wasn't in last week (would have been Christmas Eve) so they sent me to the new guy... literally I was his first patient on his very first day on the job a week before. He didn't look at my breast, but was willing to if I wanted to whip it out... but he assured my husband and me it is "hanging perfectly." Every couple of days (have been trying to wait at least three days) I break down and take a pain pill, I started writing and doing everything with my right hand to try to get the swelling and pain in my left arm under control. Yes, I'm left-handed. I can't find my sleeve anywhere, where did I put it?
Tomorrow I'm going to the courthouse to see about guardianship paperwork for my brother. He's not answering his door to the neighbor I have been relying on to kind of keep track of him. Of course, since I'm going through all of this hell, my husband pitched his fit about my brother, his periodic "you love your brother more than me" bull-shitarooney. Oh and my favorite, "Why don't you move in with him?" and "How are we going to snowbird if you have to do all this stuff for your brother!?" Honest to God, when he acts like that I wonder if I should just leave, or is he just having an attack of selfishness after doing too much for other people for so long? It is frustrating all I do for my brother and he pretty much treats me like crap because he doesn't have a grip on reality or the IQ to understand that his very "independence" depends on me. Today hubby seems back to his mostly usual loving self and I tried to broach the subject of facing the situation of my brother together as a team and not "my way or the highway" on anyone's part.
Yes, he should have 24/7 care as long as he is out of his mind and not taking medication for his psychosis, but these guys at the mental health place seems to think he's not dangerous to himself or others. How can you not be a danger and in danger if you are walking around believing you are a CIA agent in witness protection? But that's the world we live in, unless you are outright violent, no one pays attention or wants to get involved. They've even told me I need to "back off" and let my brother "live his life." I think that's hypocrisy, saying with one breath a person doesn't need you and then with the other asking you to please keep bringing him in and come into the appointments with him to find out what is real and what is not. I've been mostly not drinking since I know it may be related to ER+ cancer, but man a good shot of whiskey sounds lovely right now.
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Sula- great to see you. Happy bday to your hubs!
Sandy- just wonderful photos. I really am enjoying them.
Momwriter- thinking of you and your follow up MRI and hoping for an all clear.
Eggroll- all I can say is you are very good and patient to be in the Middle like that without exploding or tying on one big time.
I have my rescheduled bone scan in the am. At times I have felt I should just blow it off since sometimes I can't feel the pain at all, and my pcp couldn't produce at by poking around. But then I'll get the cramp and tremendous stabbing pain. So I am just making myself do it. In another week they'll retest my liver enzymes and estrogen/estradiol and I guess we'll then have sufficient info to go forward with some new plan and I can get in with my life. I've been quite stuck in a dark place.
Hoping all my Crazies are peacefully sleeping now!
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Katy, We will all be in your pocket tomorrow for your bone scan.
Sending all of our collective good thoughts your way. This is Crazy Town. We don't need to hold back here. The holidays can really suck wind. You just hold on tight to your group of crazies. Never any need to apologize for being MIA. You are here with us even when you don't post. We do feel your presence. Gentle hugs to you sweet sister. One day at a time.
7, CRAPITY, CRAP, CRAP. Great big hugs to you. We will all be with you every step of the way. I'm so sorry you're having to go through this again. Just doesn't seem right.
Octo, I was sure my hair wouldn't grow back. When it finally did start growing, it stayed at the same length for an eternity. I measured it every week with my ruler and would get so frustrated. I didn't really share that with anyone because I thought people would think I was being crazier than usual. We didn't have Crazy Town at that time. You vent away as often and as much as you like. We are all right here holding your hand.
Queen, Your trip sounds wonderful. I'm excited for you!!
Ducky, I really like your kitchen set. I hate living so far away. I would help you. (((((Ducky))))
DF, That is excellent news about your mom!! Thank you for filling us in. I'm glad to hear the Kadcyla is working so well.
Sula, I have visions of you chained to your stove! haha What a wonderful distraction though. I bet your home always smells wonderful with all that cooking going on. Nice to see you alive and kicking! Happy Birthday to the DH.
Cubbie, Sending you homemade chicken soup through the tube.
Gaia, We will all be in your pocket on Thursday. Remember.....slow deep breaths.
Chi, It is nice to see so many wonderful places without leaving our homes. Thank you for taking the time to post! The pictures are beautiful.
Momwriter, Good to see you! We will all be with you next week for your MRI. Sending good juju your way for a B9 result.
Eggroll, Good luck tomorrow. I hope you're able to get some help for your brother. I hope DH comes around and realizes you're in a difficult position. I will have that virtual shot of whiskey right along with you.
Thinking of all of you tonight. Sleep well crazies....quiet crazies too.
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ChiSandy - thank you for the wonderful pictures. I do hope to get to Italy someday with my husband as we both studied art in college. For now we just have our memories of the Venetian at Vegas lol!
Octo - Sorry to hear the hair thing is taking so long. I heard Taxotere is really tough on it. I didn't have that type of chemo first time around, Adriamycin, Cytoxin and Taxol - did a number on me, I had nothing worth wearing without a baseball cap for almost 6 months. Even then it was about a year where I had what I called an ugly short mom doo but felt comfortable in public. Too bad there isn't more of a look for women like men like Jason Stathom and Vin Diesel - young, hot and hairless (except for stuble on their chins....reow). God bless the women of color who I swear buzz it off intentionally at times, wear great makeup and big earings, bright colors and totally pull it off. If I have to do chemo again I am going to look into cold capping.
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Pardon me for just jumping in....here's my story.
Stage IIIa, lumpectomy, chemo, radiation. Last chemo 12/17/14, last radiation 2/26/15. I'm currently on the 'see the oncologist every 3 months' portion of this ride, and I've already had a couple of those visits with the requisite labs. I get labs and see my MO and RO next week, and for the first time, I'm starting to have anxiety. I didn't notice any anxiety prior to previous visits, but I certainly am with this one. What's up with that???
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Welcome Ramona....maybe you just reached your limit on labs-without-anxiety? but regardless, you are welcome here! Pull up a chair and join us on the CrazyTown porch! We will be with you for those tests.
Hugs;
Octogirl
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Hello to my dear friends....sorry I have been MIA, but still lurked often. We have been in Ocean City, Maryland this past week and had a wonderful time. And we had the pleasure of taking my GS with us. He had a chance to meet the entire in-law clan. So many uncles, aunts, and cousins, and many of my husband's friends. He is 7 years old and was impressed with how everybody "loved" him. He is a sweet child.
I've thought about you all...but special thoughts were for Katy...hoping you are doing well.
At work today.....trying to catch up. Will chat later. Love you ladies
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Shorfi........Love you more
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Okay, ladies, a prominent breast surgeon has reviewed the facts of my case.
This surgeon, who has been kind to me beyond words, spent her precious time reading an email about what I have been going through. She knew that I did not want over-treatment for my condition.
She wrote me back today to say she thought the risks of radiation for me are too high given my severe fibromyalgia. She knows that chemo preventive drugs are off the table.
She had a great idea! Breast reduction surgery! I was thrilled. Medicare will not at present pay for me to have the surgery despite back and neck pain. I am a 40DD.
Breast reduction surgery would lower the risk of having DCIS cells left near the tumor site. It would take a huge load of my pressure from my neck and back. I would be spared radiation and chemo preventive drugs which are probably not worth the SEs in my case.
The surgeon with the great idea is going to call my surgeon. On January 27, I am going to wake up a new woman! Medicare will pay because the breast reduction surgery is for cancer treatment. The surgeon can lift up these babies while she is at it.
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Welcome Ramona- you will find a kind warm place to be when you are crazy here. And no one keeps track if how crazy or how often !!!
Shorfi- thanks for your special thoughts. Many hugs going back to you. (((Shorfi)))
DF- amazing news! I am so excited for you. Not just for the surgery and outcome. But because you received such kind hands and wordsfrom this doctor. I'm sure that counts large in the overall experience. You deserved this.
I have had my radioactive injection and am just killing time waiting to go back to the hospital for the actual scan. More blood work Thursday to check liver enzymes snd estrogen then a powwow next Monday when hopefully a new future will be revealed to me too.
🙋🙋🙋🙋 to all my Crazies
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DecisionFreak: what Katy said.
Katy: ugh. Waiting waiting waiting. You get the results of this test on Monday, as well as the bloodwork?
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SlowDeepBreaths Thanks so much for the warm welcome. Looking forward to getting to "know" everyone. We all need to let off steam. Unfortunately I've been on a bit of a downer over the holiday period and now need to pull my "big girl panties" up.
Felt like I had a crappy day yesterday but seems nothing in comparison to what some are dealing with. Chemo is knocking me around and I was very ill yesterday. Spent most of the day sleeping. Hubby comes home from work to find some "lowlife" has come into our yard and smashed the window on one of our cars in an attempted break in. Makes me wild that we work our asses off for what we have and scum think they have the right to steal but what upset me more was that when we reported it to police they were absolutely apathetic. Not interested at all. Yes I know it's just a car and the damage was only a few hundred dollars but it was my understanding that their job was to investigate and solve crime. We live approx 30 klms out of town and they said it's a waste of their time to send an officer out to look, take a statement or try to get some fingerprints. They asked me all these questions on the phone; did they try the door handles, can you see any blood etc like it's my job to do their job. I know on a better day it would not have "got to me" but I'm still stewing over it and think I will make a formal complaint RE: the lazy policing. No wonder petty crime escalates to bigger things as it is never dealt with and offenders are not punished. It costs the community millions of $$$$.
Thanks for the rant. Hugs, Donna.
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Smurf.............absolutely horrible............and no it's not you, or your bad day..........they should do their friggin job...and your right......get away with small shit......move on to the bigger stuff...........hug
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ramona, I am not a physician so take what I am saying with a grain of salt. I think most people who suffer from anxiety disorder have known about it since they were children. I had my first anxiety attack when I was in the second grade. There is a possibility that you have mitral valve prolapse. Many people who experience anxiety have a heart valve problem. Has a doctor ever told you that you have a heart murmur? If you have a heart murmur you can request a heart study. Beta blockers work miracles for anxiety in people with mitral valve prolapse. I would take the beta blockers since they got my anxiety completely under control but doc says no beta blockers for me because they lower my blood pressure to the point where I am nearly a zombie. On the other hand, you may have some additional stresses in your life that have triggered an anxiety response. The only treatment that works quickly and effectively for anxiety is drug therapy. I have a prescription for xanax and I try to take as little as possible. That is because you can become chemically dependent on anxiety drugs and your body eventually needs higher levels to get rid of anxiety. Some people do okay on buspirone also called buspar. Buspar is not however candy despite being non-addictive. It appeared to cause a Lyme disease relapse when I took it. It destroyed my health for months after I took it. My mother Anne (Ani) took Buspar and started having bizarre spells where she didn't know what was going on or the names of her children. The doctors didn't know what what was wrong. My brother finally realized that she had a fit when she took Buspar. We stopped giving her the drug and she didn't have any more problems. Buspar is a drug that has effects on the nervous system. I highly recommend that you discuss your anxiety with the cancer care team and let them help you figure out the best way to address the anxiety. I hope that it is transient, but I do suggest that you talk with your medical doctor about your heart. With mitral valve prolapse, people sometimes require heart valve replacement as they get older.
I hope you get to the bottom of your anxiety. It can be a very debilitating condition if it is not addressed.
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Df, that sounds great on the breast reduction, my sis had it although
not for the bc shit, she lost 5# off of each boobie
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DecisionFreak: First, congrats on the positive progress being made in your situation! Second, thank you for your response to my post. Just to clarify, in my situation this isn't a *clinical* anxiety issue, it's just that for some reason, this time around I'm more nervous about lab results than I have been in the past. I have not had any symptoms that my MO tells me to look for. My anxiety (for lack of a better term) is more like when I was waiting for the biopsy results at the beginning of this ride, instead of "oh, another routine blood test with routine results".
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