CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
Comments
-
We’re going to get soaking rains tomorrow (with highs not even hitting 40), 15-foot waves off Lake Michigan, and ICE overnight and all day Monday. Oh, joy. Will advise DH to stay down in Oak Lawn tomorrow evening if he wants any hope of making it safely (or even unsafely) to work Monday. (And we were going to go to Navy Pier tomorrow night to see “Star Wars” in IMAX. Not gonna happen....).
Okay--here come some more photos:
Christmas lights on the Spacca Napoli, Naples:
Cathedral in Messina, Sicily (from the balcony of our stateroom):
Where we had some great arancini in Taormina, Sicily.....say it out loud:
Detail of fountain, Taormina, Sicily:
This is the shot of Mt. Etna that caused me to take my eyes off the cannoli (sampled by a feral kitten), Taormina:
Cathedral, Taormina:
Tomorrow, pix from Trapani, Monreale and Palermo.
0 -
Hi crazies, stopping by to wave hello from the middle of my radiation adventure. Still waiting to heal from industrial strength burns, slathering on cream and dressings and popping copious amounts of codeine and ibuprofen. I hope this week it will turn the corner.
We're doing a family get-together in Boston. Tuesday it's supposed to rain and snow, and that's the day we're driving my mom back to NJ. We shall see!
Hope everyone had a pleasant, relaxing holiday. Here is something that turned up on xmas day. I guess DH knew good things would come of it!
0 -
NotAgain, So glad to hear you are doing well!
Ducky, you cleaned up on the goodies. Sounds like you made it thru XMAS without too much kickin' and hollerin' as my Dad used to say.
7of9, I will keep you in my thoughts. I know it is little consolation but your spirit will shine regardless of what happens.
ChiSandy, you have so much going on that I lose track. Here's raising my glass to you that 2016 showers rose petals in your path, visions of exotic world in your imagination, and relief from the pangs and arrows of outrageous suffering and the indignities of aches and pains. Loved the photos!
We had a quiet XMAS day. A friend bought over some sweets she made, and I gave her two surprise gifts with her favorite theme, peacocks.
beppy, my mom goes in tomorrow to find out about her scans and blood tests. She is not on this site, so I have to be her voice. She is sleeping poorly worried about the test results. She has stage 4 and she is at 85 undergoing chemotherapy with KADCYLA. She looks great and the physical therapy people from home health discharged her this week. They said she is too strong now to justify additional PT to Medicaid.
Me, I am still fuming about that skinny ass doctor that wrote the rude email. My brother says when I walk into a room I have a formidable presence. I wish I felt as big and strong as other people think I am.
Wishes of joy, wonder, and health to all in the coming year.
0 -
7of9, I have to say: WTF?!?!?! If it's any consolation, you will be able to use them... eventually.
Rainnyc, Do you guys have THIS there? It is what I strictly used, and I use the left over on my face when I have been in the sun/wind. The other thing I used, every single day, was: cut open a leaf from my aloe plant, and applied liberally. They couldn't believe how well my skin came through! Sticky, yes, but nothing like it. I found out about aloe when I was doing a sweat with friends , I must have been about 22 or 23, and in the lodge, I slipped and my leg got badly burned. We had our own shaman/healer guy, -he was the sweetest person, grabbed me, and applied aloe he had brought! (he also had brought the peyote). I was really amazed at how fast it calmed the pain. And no scar, either.
chi, I am loving my vicarious adventure! Of course, feral kittens in Taormina( I love the sound of that word) WOULD have cannoli as their most favored food to steal a taste of!
Ducky, that was an awesome haul! Sorry about the Ickiness of the daughter the next day. (I am sure she will make it up to you, it may be that she was just secretly stressed).
love to all other crazies, and did any other Cali girls feel the earthquake at 10:32? It was just a short like 3 second one, a roly one, I haven't looked to see where the epicenter was yet tho
0 -
Ladies....yes I did well.......will buy myself a medical alert bracelet with some of it......need if for my LE......not sure why I am concerned it's been 5 years.......LOL.....but the hospital after the memory incident said.........."you better get one, the EMT's could have put the IV line in your LE arm, and that would have been real bad, especially since you were not coherent and could not tell them you have LE.".......
I have a plastic free one from LE Inc. and it sure is tacky looking and scratches cause it has tiny points around the outside edge.........smart for an LE patient right.......LOL.....
Other then that I will just do "whatever" ;with the money gifts.......the majority came from one son, but they are all good to me when it comes to giving.............just would appreciate more of them giving them selves then "things".......but they are good..........by themselves I a mean..........a phone call, a visit, a surprise invite to dinner, and not out in a restaurant............or an unexpected visit "just because"...........small things.......I don't need big......just to say "hey I'm thinking about you"..............
They don't realize that reaching out and taking your arm when your looking unsteady means more then a gift.............walking beside you instead of in front of you when your all going somewhere together...........offering you a ride when the family is doing and all going instead of waiting to see which of the 6 will offer first, or eventually having to say "hey can I hop in with you when you go"........it's not that hard............kind of like when I took them by the hand at 5 years old......or drove them to the dance at 15......and went back and picked them up....I didn't wait for other parent's to say "I'll drive them", I offered without being asked or told............or when they came home and dinner was done, but I kept it warm for them and sat with them while they ate....instead of leaving the in the room to eat alone............
Ok I"m whining......sorry ladies.....just thinking out loud........hugs and you ladies have a great day......still gray and ugly here.........where is the sun......LOL0 -
Hi ducky, I know I don't post much here, but I so admire you-your spirit, your fire, and your love of family shine through! I hope I can be like you when I grow up! Xoxoxoxo
0 -
I got myself a lymphedema alert bracelet before my trip and wore it at all times, even over my sleeve & gauntlet on the plane. It’s gold-toned and stainless large “rope” style, with lobster claw clasps at each end to hook on to the medical alert ID plate (mine says “Lymphedema Alert: No Needles/BP Right arm.” I also got a heart-shaped charm saying “Penicillin Allergy” and am awaiting delivery of the ones I ordered for Cipro and Sulfa allergies as well. I downloaded and printed Medical Alert ID cards (on card stock) and carry one in my wallet and one in the “neck safe” I wear for international travel.
Never was much of a charm-bracelet wearer, but when it’s a matter of life & death... Wish they made custom-engravable Pandora-style medical alert charms (or that Pandora offered them). Of course, EMTs would have to be taught that medical alert jewelry takes more forms than in the old ID-bracelet and plastic dog-tag days. After my lumpectomy, I was sent home with an ugly pink hospital-style plastic band reading “Lymphedema precautions.” Ditched it, thinking I wouldn’t need it unless I got LE, and in the meantime it made me look like a hospital patient who went AWOL.
0 -
Ducky: reading and "listening". I wouldn't call it whining, but something I'm trying to learn this last year--not my diagnosis, but that of my father, and wrestling with what to do for him that allows....what? Pride? Self-respect?
0 -
Ducky, I don't hear any whining. So often, people want to help, but they are clueless. It is obvious that your children love you. I think it is not only appropriate but also necessary to start sharing what is important to you with your children. You are not asking for the moon! You are asking for some new behaviors that will make your life easier and less challenging than it is right now. Big Hug!
0 -
Good Evening Wonderful Crazies,
I feel like it's been forever since I've been here.
DF, Sending my best wishes tomorrow for you and your mom. We will all be in your pocket. Please fill us in when you can. Just reach in and give a squeeze when you need us. We would all love to read your "on the butt story" when you get a chance. Any opportunity we get to laugh around here is a good day in my book!! Your flowers are lovely!!
7of9, You must be going totally mad by now waiting for your results??!! We will all be in your pocket as you wait for the report. Please let us know when you can. I'm hoping you can use that new shampoo for a long time to come. Gentle hugs to you!! BTW....my MO prescribed Marinol for me when I was going through chemo. I never needed it but you may want to ask your MO. I think we should all get to smoke, eat, drink or whatever gives us some relief. Puff, puff, pass. Ooooops...wrong thread!! haha
DF and 7:
Smurfette, Welcome to Crazy Town!!
Please pull up a chair and get your crazy on. Here is your Crazy Town kit consisting of a flashlight, magnifying glass, mirror and coconut oil. Please use them wisely!! I will tell the story of the Jolly Poo in my next post. haha For now, let's just say that my DD is just as loony as her mother.
Lucy, HI!! I bet you had great fun with the grands over the holiday!! Yes, DH is feeling better although he still has a lingering cough. Thank you for asking. How is your DH??
Katy, Don't feel badly for me being trapped on the floor. I really got a very good laugh. How are you doing?? I have you down for a second surgery on Jan. 15th - is that date still good? I love Jack's angel wings!! Here are some pictures of the train set-up!!
Gaia, Thinking of you. The pedicure it a necessity for me. I'm ashamed to say, I can't reach my toes. My mom had horrible toenails and I'm always afraid mine will end up like hers. I'm a bit neurotic about my feet. Come to think of it, I am neurotic about MANY things. haha
Chi, I've really enjoyed all of your wonderful pictures! Thank you for sharing them all with us. Hope your cold is getting better.
Tomboy, Glad you got a good chuckle out of my story!! Your tree is so adorable and I'm so thrilled to see the Jolly Poo front and center!! DD will be so happy. haha I didn't feel any earthquakes.
Ducky, Your story made me laugh so hard!! I even read it to my DH. hahahahahaha....still laughing each time I think about it. Yes, we are two peas in a pod. I would LOVE to see that video!!!! I'm going to order this shirt for you. hahahahaha
BTW, that last post of your was beautiful and made me a bit teary eyed. We love and nurture our children to adulthood. It shouldn't be too much to ask that they take care of us in the same way when we age. Great post.
Littleblue, You nailed our Ducky to a T. She acts tough, but she has a heart of GOLD. Shhhhhhh.....don't tell her I told you that!!
Queen, The train was TOTALLY worth it!! My little dog didn't have the same opinion. He growled every time I turned it on, and he also attacked the train and derailed it a few times. I know he will be very glad when we pack it away until next year. haha A "just because" trip sounds like so much FUN. I haven't done one of those in so long. Will you be doing anything special?? That is a good question you bring up about allowing pride and dignity for our parents. My DDad came to live with me when my mom passed, and all I wanted to do was take care of him. At the same time, he enjoyed his independence and didn't like to be fussed over. It's a fine line for sure. In the end, I hope I did right by him.
Mustlovepoodles, I've never tried to replicate a Chick-fil-A salad. I should put that on my list of things to do! How did it come out???
Rain, I wish you didn't have to go through all of that with your skin. My RO didn't let me put anything on my skin when I went through treatment. I thought it was so odd that everyone else was being prescribed creams and lotions. The only thing he let me use was pure Aloe Vera Gel. I hope it gets better soon!!
Eggroll, That poo story was just disturbing!! I can't believe she wiped it in your hair. I think I may have lost my cookies for sure. You've been dealing with so much poo lately, I'm thinking I should send you a jolly poo like Tomboy's. haha
Octo, Sounds like your house is the place to be with all that cooking you've been doing!! The tea towel is darling.
Iris, So good to see you post. I was wondering what happened to you!! Hope you got the computer problems under control. We miss you when you're not here!!
Cubbie, I hope you're feeling better from the head cold.
Rose, Hope you got to sleep in heavenly peace!
Poppy, How are the shingles??? Did you kick them to the curb yet??
NotAgain, So glad you checked in. Happy to hear your doing good!! I'm sure the Diep ladies appreciated the uplifting post.
Sula, I'm having food porn withdrawals!!
Shorfi, I hope you were able to get some relief from your pain.
April25, How are you??? Did you spend the holiday with your sister??
Sorry the post was so long, I had a lot of catching up to do.
I had a nice Christmas with my DH, DSon, DD, DB and DSister. We have a tradition of staying in our jammies all day. It was fun and relaxing. My nephew came over in the morning (in their jammies), and we exchanged gifts. My niece and her family left today for their new home in Georgia. My sister is in a very bad place tonight. I hope so much it gets better for her. I really worry about her.
Thinking of all the crazies and the wonderful support we have here. We are all so different, yet face so many of the same challenges. I'm always so grateful for all of you. I'm glad we have this safe place to let it all out without judgment. Thank you for all that you share and for being a part of this thread.
Love to all....quiet crazies too!! xxoo
0 -
ChiSandy, I am the consummate shopper. I also make European style necklaces and beads. When I get time, I will look around and see what might be possible for a bracelet like you describe. Not to sell anything to you, but to see what could be done. I have to wear a stainless steel medical bracelet due to a medication I take. I have a medical ID in my wallet.
0 -
eggroll, I just noticed you asked for help in getting a guardian for your brother. I have done some research on guardianship, and I will look and see what I can find. Your brother needs 24/7 custodial care, but that may be an impossible feat. I wasn't ignoring you. I just didn't see what you wrote. I think you wrote about this issue in another post so I will go to your profile page and re-read your posts.
0 -
I have used up nearly all my data and it looks like Verizon will not let me have additional data unless I upgrade my plan. Screw them.
On My Butt, I was. I live as y'all know in the deep South after a lifetime almost of being a city slicker. I am permanently disabled by fibromyalgia but I did have a little extra energy and vigor on HRT until I had to stop it due to the bc diagnosis.
My uncle who had an education in economics is a baker. He is in his early 70s. I guess he must have been around 70 three years ago and I was about 58 years old.
My uncle loves ornamental plants, and the state where I live has some of most unique and extensive foliage growing wild. My uncle and I have stopped by the side of the road to dig up plants that I can root for my giant garden.
One day my uncle suggested that we take a drive down along the railroad tracks where he recalled seeing pampas grass growing wild. crazies, this was not dwarf Pappas grass. This was the real thing. It grows very high with beautiful plumes that wave in the wind. After I save this post, I will look for a photo in the public domain that I can post. A ridge of Pappas grass is almost as good as a privacy hedge.
Did I mention that my uncle was in a car accident many years ago that crushed his foot? He has all kinds of metal pins in his foot. He manages to get around, but he could be pulled off balance easily.
Back in a moment. Will save what I wrote and resume.
0 -
For about the tenth time I deleted a post accidentally. It was my On My Butt Story. Too tired to start over now. Tomorrow.
0 -
Ha, ha! Verizon told me I had exceeded data limits for my plan and they wouldn't sell me any more data time. They wanted me to upgrade my plan. I went back to my room, turned over the new wireless router, typed in the pass code under the phone's wireless settings, and now I have unlimited data. I have a month to month plan. I hate being locked into those contracts. I am going to buy a nicer phone than the one I have, which is decent but heavily used, and I am going to get a less expensive plan that offers more data with two phone lines for me and my brother.
0 -
slow deep breaths.. Thanks for the pocket message... We are on our way to first appt. I got my results last Wednesday and me and my attivan sat on them til yesterday when I broke the news to d h. My kick ass nurses from both sugeon and onc set up all my appts and scans this week (and refills) so we are in map and plan mode.
0 -
Just want to say. ......you ladies are the best..........hugs......
Hanging in there and trying to get through my head...........Life is not "all about me"......maybe I am just expecting "'way to much".........Once when I was (I guess whining is what the person thought I was doing).............they said to me..............."Your doing a lot of complaining for someone who gave birth to these kids"........when the actual truth is.."They didn't ask to be born..................maybe that person was right!!!!!!!!!!!!!!!!!!!
0 -
hugs to you, ducky....and sorry, but I can't agree that you are whining. I also think you should just let your kids know what you need.
but on the topic of whining: I'd like to whine a bit. May I? I KNOW I said I wouldn't obsess about my hair until the New Year, but I really am worried, and haven't seen any progress...started to cry myself to sleep last night but then resorted to a bit of leafy stuff to help me sleep. I need distractions and fortunately this will be a busy week, especially for one when I am theoretically on vacation.
Sending love to all the crazies.
Octogirl
0 -
Dont worry Octo! My hospital chemo info says don't expect to lose the wig until the 6 month mark. You got time, lady!
0 -
Octo: sympathy about the hair! All the reminders of this bleep can just go away!
7: glad things have started getting underway for you.
Eggroll: please do keep us posted about your brother, as far as you feel comfortable doing so.
SlowDeep: (admires train photographs) Poor dog! That train was clearly very dangerous. The just-because trip is going to be fairly quiet: an afternoon at the Art Institute, definitely used book stores. Pampering at the Spa Nordstrom across the street from where we're staying--I ended up getting two Nordstrom gift certificates, since my last trip to Chicago. Basically, an anti-crazy trip.
0 -
7of9- thinking of you today. I'm glad you are in action mode now that the holidays are over and you have the DH on the team now. I can't imagine your anguish. Sending you a warm, hopefully calming hug.
Octo-you know you are free to obsess as much as you want here. Crazytown is a place where there is no judgement. Only love and support. I wish I could stimulate those follicles for you and get the show on the road. It will happen. Several in my March chemo group could have written that same post. Sure it wasn't coming back. Then one day it does. Waiting and watching is grueling. Use any means you can to distract and calm yourself, and know we are all here for you. My best hug going out to you now, my dear.
I am very grateful to be past the holidays. It has been painful. I'm not proud of how I've handled any aspect of it, and am only partially functioning. I feel a bit better, honestly, from the stopping of the Tamoxifen. The depression and hot flashes are better, but new worries about being unprotected have cropped up in their place. Then I ask myself why I even care as the quality of my life is so bad right now. Nothing interests me. There is no joy, except the animals, and they aren't getting enough from me either. I need to reschedule the bone scan and the retest of my liver enzymes and estrogen so new plans can be made. I feel I'm out of energy. Life energy. And it just won't stop raining.
I have promised myself to take Jack on an outing to the beach on the first non-rainy day we have. It might be a couple more days. Because I've been so inactive, I'm starting over again and can't walk very far. But it always has inspired me to see Jack run on the beach and I'm hoping it won't fail me now.
So sorry for the whining. For this is the real deal. Whining. I know so many are in worse situations than me but I just can't snap out of it. I am able to see the birds in the backyard now if I close the bad eye. It's a truly simple pleasure but I can't live on it 24/7. And yes Beppy, 1/15 is the next cataract surgery. I'm not too nervous, now that I've been through the first. And I think it will help my mood to have full sight back and just be past it. And the bone scan, and this next round of important labs. I have been in contact with my shrink, who's trying to help. Reminded me again of the ancient practice of meditation in the graveyard. They used to do that to really understand the insignificance of individual life against the backdrop of all life, before and after our own. We are like blades of grass in an endless meadow.
So my Crazies...thanks for listening. I have been sitting over here in the corner, listening, reading, and sending out what love I can. Sorry I've been MIA.
🎪🎪🎪
0 -
Katy: as you say, no judgement here.
0 -
Yeah, Katy, you ain't heard nothing yet when it comes to whining. Just you wait!
0 -
Katy......I feel exactly like you.......the QOL sucks so much you wonder why you even care what happens............then on top of it you have life's problems which are totally unrelated to the cancer, but the SE's from the cancer crap makes even the smallest problems with life seem monumental.....so I know where your coming from.....I rearranged the furniture today in my living room trying to find places where some of my mother's things from the shore house can go.....I did pretty good, but am certain I won't be able to walk by tonight from pushing and shoving it all......I did do pretty well with finding space for stuff.....I have a very pretty kitchen set that no one wants, and I refuse to leave it......that is bothering me....this is it......not a great shot, but it's all the pieces you see.....including the hutch in the corner........
Maybe eventually someone will want it........the weather is getting cooler here now such a shame when it was in the 70's we could not get down there to pack and move............like I said before.......poor timing.......holidays, the wedding, just no time everyone was busy, and not sure anyone gave a shit...........
My daughter took the dining room set out, but that is it....she put it in her new beach house, and never even sent me a picture to let me see what it looked like in her place........Nice huh.........and trust me I will not ask..............cause frankly I don't care.............so you might say "
why are you bitching about it then" ....here is why.....common courtesy.............I didn't even know she had moved it out of the house till it was done........went down 2 times, and never said "hey Mom would you like to take a ride to the shore we're going to move the furniture and it will give you a chance to see our new place too............since we made settlement in Sept and have not shown it to you yet.......................yea right.....like that was going to happen..............like I say "shit happens"..........
So Katy your not alone in your whining..........and yes we're all still here to listen....hugs.0 -
slow and all crazies,
Anne (Ani) is beating back Stage IV breast cancer in her bones and liver with the help of KADCYLA! The oncologist told her that her abdominal scans and blood tests showed significant improvements after three months on this powerful double whammy chemo drug. The oncologist was especially thrilled to tell my mom that the cancer tumors have diminished greatly in the liver. I think she may be with us a bit longer. Something else besides cancer may get Anne.
When we got the news about Mets last March, and Anne said she wanted to live, an old friend of mine told me that my mother was fighting a losing battle. I remember thinking "You don't know my mother very well. She was going downhill when the doctor switched her from Herceptin and Tamoxifen to KADCYLA. Her original oncologist who has been out of commission due to a health issue wrote in a report about six months ago that Anne was too weak with too little functionality to handle strong chemotherapy. My mom is hard of hearing and she did not hear this death sentence when the nurse read it to me.
Well, when we got home that day, I told Anne what the doctor said. We rallied around my mom, and we threw her ass into a demanding rehabilitation hospital. Anne called every night begging to come home but we let her cry. She finished the rehab program with flying colors. Last week the home health physical therapy supervisor discharged her from PT. He said she was so strong that the company could not justify to Medicare giving her any more PT. Anne is getting Xgeva shots to help strengthen her bones.
Anne looks beautiful for her age. You would never dream this little lady is fighting metastatic breast cancer. KADCYLA is a drug approved by FDA in 2013 on the fast track for its markedly higher level of efficacy in treating metastatic breast cancer.
0 -
Decision: wonderful! (dabs tiniest tear from my eye, but not a schmaltzy tear at all)
0 -
decision freak.... That's the second time in two days I read about that drug doing wonders... So glad to hear about your mom.
0 -
DF- that is wonderful news. Good for all of you. Especially Ani!
Ducky- and Queen, and DF- thank you. Your support and caring reached me full strength through the tube today
0 -
I am trying to think of that old song from maybe the 70s. I was called "The Joker," by the Steve Miller Band.
We could rewrite it with a crazy slant.
So, I can't cut and paste. Still using my cell phone. The lyrics are easy to find on Google.
First three lines of original song:
Some people call me the space cowboy, yeah
Some people call me the gangster of love
Some people call me Maurice
I just threw some words in to show you where my mind is going. Anybody want to look up the lyrics and keep going? Feel free to rewrite. I am just playing around.
The Crazies
Some people call me the queen whiner, yeah
Some people call me the goddess of bald
Some people call me ducky
Cause I guide our the bitch boat with love
Get my drift?
0 -
DF.......I would love to see your Supermom....can you send a picture to us.............
0
