CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Notagain. It's good to have a plan. Thank you for the thoughts. DIEP is pretty cutting edge. If you are eligible, I.e. Have enough fat in the right places, you could be very happy with the outcome. I'm no expert, and elected to stay flat, but there is lots of good info and board here in bco. Ask the hard questions up front. Good luck.
🎪🎪🎪
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Love and hugs ladies.syour all terrific...................
Slow, can't wait for the stories
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Katy, that is one of the pains that I have too, even though i only had a 'segmental mastectomy', also called a 'Quadrantectomy', thats what they call it on most of my papers. But really it was just a lumpectomy. My BS tried really hard to make it look nice. When I came to, she walked in a little later, and asked me if i looked yet, I said no; can I see it? and she said sure! I looked, and then looked up at her, and said, "It's so pretty!" , she smiled, but I think that is one of the last times she smiled at me. I developed a huge hematoma in my breast, and two seromas, one in my axilla, and one in the breast proper. I can still see sort of a bruise around the scar, and my breast feels like a rock in a sock. And hurts. She offered to do what is called a "washout", in the operating room, but there was no way in hell I wanted to go back in there. Plus she didn't tell me what a washout was.. That is part of the reason i am now seeing the anesthesiologist/pain doctor. It has been two days, on a blood pressure medication of all things, and I can't believe how much better I felt already! I do still the my percocet, but he and I will be working on that too. I feel remarkably well today. I was only a little worried about that medicine, as my blood pressure is the only thing normal about me... I wish you cn find someone to help with your pain, it is exhausting and depressing to hurt every day. ((((katy))))
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Good evening Crazies,
Checking in while my soup is simmering (tom kha gai) it's getting cold out here in Sonoma... Though nothing like you Back Easters have to deal with.
Ducky,
Sorry you didn't get to browse the aisles and find a coloring book. I agree with Proud sometimes it's the best thing to distract yourself with something . How about a hot toddy or some mulled wine or cider? Besides the relaxing ingredients those drinks put out amazing scents, and we all know the magic or aroma therapy.
Jack,
I just love watching dogs having a good time. You're lucky that tutti can run free on the beach, if you let a Siberian Husky off leash in an up fenced area you'll never see it again! No matter how much they love you, they love running more.I sounds like you had a relaxing and comforting day.
Slow,
Always interested in hearing wooden spoon stories. Have you ever seen the film Amarcord, it's a cmedy by Fellini back back in the mid 70s ( won the Oscar for best foreign film) it's a love letter to his crazy Italian family and his little home town . Just a delightful film, and I recommend it to any of you that have any familial experience with Italians.
Gaia,
Enjoy you trip to RI, a friend of mine went to Portsmouth Abbey and RI is still one of his favorite places. Evidently it has quite a hold because of its' rugged beauty.
Octo,
It was certainly a terrible thing InititLly get you about holding you peace for a while... I come from SF so....'nuff said. You could probably quite a bit about me from that info.
Anyway,
Gotta get back to my soup or we won't get any dinner. I'll be Che king in later. Keep coloring and all that crayon talk has me thinking of finger paints. Does anyone still do that???
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None of my business, Notagain, but how much do they really want you to do the mastectomy? I was wondering, cause I have always thought if it returns in me, I would just have them do another lumpy, cause I don't want any other part of my body cut up. No nerves cut, no lymphatic channels cut, not muscles, nothing...
Hug for everyone who needs one, and katy, your furkid is FAST!!
Okay all you coloring ladies! i think you may have discovered my new career! I can really draw, and so I am wondering if I can design some coloring books for adults? I have thought about this before, but i had no idea that there WERE coloring books for adults! Maybe I will bring a drawing here to ask you all what you think. Or, if there is a photo of someone or something you love, send it to me, and I will see if I can transform it into something you can color! I need to go and look at some examples of this!
Ducky, I bet all of us here have done stuff like that. I know i have!
Sorry about insurance woes octo, you go get em!
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Sula! I haven't even read your post yet! I have to tell you how much I admire you for the tom kha gai! My favorite soup ever! Where do you find galanga and kaffir lime leaves!!! OMG, I can states it now! Is there a recipe for that on your website for me to look for??
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Good Evening Crazies,
I will catch up with all of you after dinner. Just wanted to post my story and I'll BBL.
By now you all know I have a story for EVERYTHING. This is another story about my mom and her wooden spoon.
One day my mom asked me if I would take all the fattening food in our cupboard and put it somewhere where she couldn't get to it. She was on a diet and she didn't want to be tempted. So I gathered all the food and hid it in the attic. Access to the attic was in her bedroom closet. She made me PROMISE not to let her eat any of it. I gave her my word.
There we were one evening....my brother wasn't home and my DD was at work (he worked swing shift). She decided she wanted some of the snacks. So she asked me to get them. I reminded her that I promised to keep them hidden away from her. She said she had changed her mind. I wouldn't give in because I made a promise. Then she said she was serious, she didn't want to diet anymore. I said NO...a promise is a promise. Then she started getting MAD. I still didn't give in. This went on for a good hour and she kept getting madder and madder. Then she got out the wooden spoon. She said I'm not joking with you anymore, get the snacks and bring them here. I stood my ground. Then she started chasing me throughout the house with the wooden spoon. She couldn't catch me - she was short and had squatty legs. Half the time she was laughing, the other half she was getting REALLY mad. Pretty soon she wasn't laughing anymore and she was really trying to hit me with that WOODEN SPOON!! She couldn't hit me hard enough with the spoon because I was running, but she did end up getting a hold of my hair (she was also a hair puller).
I never gave in and I kept my word. In fact, when we moved out of that house, the snacks were still in the attic. In her later years we used to laugh about that story. She remembered chasing me with the spoon, but didn't remember pulling my hair. I didn't hold a grudge because I knew she was a CRAZY Italian woman!! haha
I still have her wooden spoon, however, I didn't carry on the tradition. When my kids see the wooden spoon, they know it's time to make sauce and a homemade meal will follow.
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I use my fingers all the time when I am painting oils on canvas, and sometimes with acrylic too. I get into it, its kinda fun to do a mono print: rub and place your colors on glass, and then while the paint is still wet, lay a piece of paper on it, and rub a big spoon on it, or the side of your hand, and then gently pull it off, from one edge to the other, presto! Fun to make cards this way. acrylic works pretty well!
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Awwww (((Bep)))
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Tomboy,
I definitely think you should think about designing an adult coloring book. I'd buy one!
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I would buy one of the coloring books too, Tomboy!
SDB, no wonder you are mayor: you clearly know how to keep a promise! (which in CT, where everything is Crazy, is a requirement for our leader rather than a disqualifier :-))
Hugs to all, especially those struggling with pain tonight!
Octogirl
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Beppy too funny about the wooden spoon. I laughed out loud.
Tomboy- Jack IS VERY fast! It made me so happy to see him just running for the joy if it. He's pretty sacked out now. And thanks for sharing your pain story. I feel very alone sometimes about it and embarrassed and scared I'm still on opioid meds after almost a year. It helps knowing I'm not alone.
Yes to the coloring book! Great idea. How about a version of this?:
Or this?
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Read all of the posts, but I'm feeling very tired and weak from all of today's errands.
Saw my endocrinologist. He said my ultrasound results were 94% certainty that the nodules on my thyroid are not cancer. The nodules are 4-5mm in size and would be difficult to biopsy. In most cases, the biopsy results are inconclusive. He could refer me to a surgeon for an opinion. He recommends monitoring at 6mos, 1yr and 2yrs, with blood tests and ultrasounds. He clearly stated that he understands why some people are not comfortable with just monitoring (WOW!) and asked me how I would like to proceed. Honestly, I told him I am tired of being poked, prodded and cut. I opted for the monitoring. So much for that adventure.
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Sandy, I loved Colorforms and do not understand why of all the toys that have made comebacks, nobody has ever brought Colorforms back. I still have my sets! Garfield and Peanuts! I used to stick them to windows and the fridge as well. I'd make comic strips, cutting out word balloons from paper for the characters.
Tomboy, if the Shopkins make you smile as you turn out the light that is very important. I have my coloring books for the same reason.
Gaia, have a good time in Rhode Island. Enjoy the rest and view!
Octo, I didn't realize you were so close to the end on your chemotherapy. Almost there!
Iris, glad to see you are trying out the coloring thing, too. The coloring books are definitely the hot Christmas item this year, all the bookstores and craft stores have them front and center. I turn on the radio and do a bit of coloring before bed, it helps to take my mind off things so I can sleep better. I think it works because it reminds me of when I was a kid.
Katy, the beach is beautiful. I hope your walk made you feel better.
NotAgain, sounds like things are both scary and hopeful at the same time. We'll be in your pocket and crossing our fingers for good scans on Tuesday!
Tomboy, glad to hear this new medication is helping you. It sounds unusual, it's a blood pressure medication?
Sula, I haven't done finger paints since I was in about 2nd grade. I can't say I've seen them anywhere for sale. I don't even know if they still do them in school. I think the biggest obstacle with them was that you had to have that special paper with the slightly shiny surface to really make them work right.
Slow, loved your wooden spoon story. One of my coworkers is Italian, it sounds so much like one of her family stories.
Poppy, your ultrasound results sound encouraging. It is so hard to know what to do sometimes. I can understand why you'd want to opt for monitoring, rather than undergo another procedure that might or might not give you a clear answer.
Actually at work tonight, waiting for some computers to do stuff. Got to watch Katy's video when I get back home.
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hi tomboy, he said if I was in my 70 s he would do lumpy,but because I'm in my 50 s he would do mast. This third bout with BC has scared me. I lost my oldest sister to BC. My next oldest had it 18 years ago and has had two primary lung cancers now - and is still kicking cancer!s butt - and now me x 3. It may be a knee jerk reaction to say I just want them gone. With that said I appreciate your opinions because I'm so relieved they are saying no chemo that 10 hour surgery looks good. I need to read up on all of this and learn your experiences.
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Jackbirdie, is Jack a Jack Russell? Very cute... And your kitty too! I have contemplated flat, that would be so much simpler. How do you like it? There is something freeing in the idea,. If any of you have suggestions I'm not even sure what hard questions to ask!
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Hi Notagain, I know you weren't askin me, but like Jack, I decided to go flat. I don't do prostheses either. No one seems to care or notice, and I wear tight or for fitting tops a lot. It was the right decision at the time, for me. In a few years I may change my mind and get new ones but right now I think I'd miss the time I spent with reconstruction more than I miss my killer boobs, if that makes sense. It's a very personal decision, with no wrong answer. That said, I've been very open about my diagnosis and treatment, so sometimes I wind up discussion my breasts or mastectomy with people I'd never have expected. It's an educational oportunity. So...yeah. just something to consider...
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Jack,
For some reason I thought you were Jack and your dog was Tutti??? Really confused. He is fast and cute though
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NotAgain, with your family hx have you had genetic testing? Could be one of the reasons your doc is advocating mx rather than lx is prophylactic--if you are positive for a mutation your chance of multiple local recurrence rises dramatically. Also, if that breast has already been radiated then lx+RT isn't an option--and lx w/o it might have a poorer prognosis.
ducky, have you considered recording your physician and ER visits via your cellphone, at least when the docs are advising you as to results and followup appts.? If they balk, tell them you need to make absolutely sure there are no misunderstandings later on. Sometimes discharge summaries don't prominently display the facility's logo--or advise you to go to a prof. bldg rather than the hospital itself. Does that hospital have a patient web portal, and have you set up an account for it? I know that NorthShoreConnect is maddeningly thorough, to the point of sending me daily reminders for the next daily radiation treatments--and in my after-visit summaries, repeating the list of “other medical problems" and “patient medications" verbatim and ad infinitum. (Already had to start a second binder with all that extra paper). So is Presence Health, my primary's and my husband's surgeons' system. (We are singlehandedly keeping the ink & paper companies in business).
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Sula- it is confusing. I am Katy, Jack is the dog, Birdie was a lovely little bird who was my first pet/responsibility after my big breakdown 8 years ago, and Tutti is the cat. I ended up with several more birds. 2 African grays, one a rescue and one I got as a baby. She was a wonderful talker. Birdie talked a bit too. After only several years of owning birds I developed a rare lung disorder called hypersensitivity pneumanitas. (Also known as bird keeper's lung- usually occurring when people work in closed aviaries for over a decade- it was very odd that it happened to me in my home situation). My sat rates were in the 70s, I couldn't breathe, was on home oxygen for months, tried every antibiotic- it was s nightmare. After months when my pcp couldn't figure it out (he should have referred me MUCH sooner) , I was referred to a pulmonologist, the nearest of which was hours away. The first day I went to see her she admitted me to the hospital for a week. She suspected the birds and did a blood test. It took almost a month to get this special test back. It's not an allergy, but exposure to the spores in the air, etc causing both lower lungs to look like cheesecloth on a CT scan. I had a bronchoscopy (like a lung biopsy) and the doctor said there was almost no healthy tissue and shook his head and said it was a shame medical intervention hadn't come sooner. They talked about the lung transplant list. After several days of high doses of steroids and double the oxygen, though, my sat rates started to come up. The pulmonologist had seen this before. She said I would not be able to return to my home ever. Even a hazmat type cleaning wouldn't be safe enough. All of the birds would have to be rehomed. The story is long and sad, but those birds (and Jack) had become my first stability in years after losing everything due to bipolar meltdowns. I had lost everything before and now I was losing everything again. A friend let me stay in her house for six months. Most of that time I was alone, crying, drinking until I fell down. Maybe it's hard to understand why I had a such a strong reaction, but to me it was like having your house burn down with your family inside. For the second time in ten years I was homeless.
Good homes were found all across the country for the birds. I wasn't supposed to go near them to say goodbye, but I put a mask on and did anyway. I still correspond with Birdie's new owner.
After six months I pulled myself together, found a small house to rent, and started over. I had to replace much of my belongings, furniture, anything like books, fabric covered furniture, mattresses. I got what had been salvaged out of storage and Jack and I made a new home. It was adorable. I finally felt like I could move forward. I was in a new town, and didn't know anyone, but was optimistic I would meet new friends.
Six weeks later I was dxd with bc. Since I'd only been in this town for s matter of weeks, I would go through tx pretty much alone. Closest family were hundreds of miles away. I had one friend about 50 miles away. Bco saved me.
You all pretty much know the rest. I have never had the courage or strength to tell this story on bco. I am crying now, remembering. It has all been so hard.
It might explain a little more why the idea of more invasion, the cataract surgery, breast reconstruction for a couple of mounds that I wouldn't have feeling in,that nobody will ever see, is so distasteful and even frightening to me. I really just can't take any more.
Like LittleBlue said, it is so personal, and maybe in a few years I'll change my mind. People say I'm still so young at 58 but I feel a hundred years old. I am weary.
Sorry for such a long post.
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Katy, thank you for sharing this story with us. What a lot you have been through! It amazes me how caring you are for others, given all that has been thrown your way.
One point of confusion on my part (or, you know, denseness): You are in a different house and town now than the one you described above, i.e. you moved after finishing treatment? I think you were in a new house around when I joined BCO so I was never sure how that worked.
Anyway, once again, thanks for telling us about all that you've been through. Most moving and brave of you.
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Rain- I moved out of the house I had tx in. There were two reasons. There was a rodent problem in the attic (which the smell of Tutti, and some big traps with pieces of peanut butter sandwich contraptions helped with- they were rats, not mice, over a dozen, and they got one female, unfortunately, just after giving birth) which was just disgusting, especially during chemo, but also I started being haunted about my cancer progressing, living in a rental property. Me being too sick to move, alone, the landlord raising the rent beyond my means, or selling. In short, no control. Also, I wasn't able to offer Jack the kind if space he deserved, especially when I'm not feeling well.
So with my IRL loved ones looking on and collectively holding their breath, thinking I was crazy (and you know I am) to take this on while still in treatment, I decided, once again, hopefully for the last time, to start over in a place without memories of chemo and rats and the pain from surgery, which was probably for me, worse than chemo. A place where no landlord could sell, or raise the rent, and room for visitors to stay overnight, which I didn't have before. And a bathtub to soak in, which I didn't have before.
I left a lot out of the story for the sake of brevity, which I failed yo accomplish anyway, but thank you for caring. There's no question that that period of my life, just over a year ago, was harder on me than having cancer. In fact, I often wonder whether the physical and emotional assault to my immune system allowed the bitch toget a foothold.
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And a good morning to all crazies--
I've been reading but not posting too much because Crazy.
Tomboy, glad you have a pain plan. I really love your shopkin piece. Not sure what to call it: tableau? Anyway, it's beautiful--like all the pieces you've posted here!
Octo, I hope the opening of the campus goes well today. And hugs.
Cubby, your support group sounds fantastic.
And Gaia, hope you're finding peace and quiet in RI. Keeping an eye on Brooklyn for ya.
Proud, glad you're having fewer aches.
Beppy, your wooden spoon story was hilarious!
Notagain, no nodes is tremendous news. Have you gone for genetic counseling?
Poppy, I know what you mean about being poked and prodded. I would have gone for the monitoring given the odds in your favor.
And everyone else: I'm so glad you're here! Have fun with your coloring books! Is it reasonable to think that you'll be posting some of the finished art?
The apartment is quiet this morning. DS is off to school, and I'm sitting here with my tea. DH still asleep. Went for the first lymphedema treatment yesterday and will go twice a week once rads start. I also met in person with someone from the insurance/finance office. She couldn't really help me in the business of finding new insurance -- though she had some suggestions -- but she did take my $24,000 hospital bill from August, when I was having chemo but little else, and immediately said, "there's something wrong with this. Let me take a look." What a relief. She's going to reconcile with the confusing statements from the nearly defunct insurer. Then she said, about the insurer, "You know that we will never turn away from a patient in active treatment." So, what with one thing and another, I left her office with a lighter heart -- though I still have to find new insurance. The other somewhat positive news is that the situation is finally starting to get some press, that is, what a cosmic mess it is for the 200,000 people who have exactly two weeks to find coverage. So one of my calls today will be to our congressman's office.
With all of the stress, I've been on an official ***cheesy fiction*** reading binge. Finished the new mystery by Robert Galbraith (J.K. Rowling) and am partway through the new novel that's a continuation of the Lisbeth Salander series by the late Steig Larsson. Gosh they are cheesy. Delicious junk food. Have the new Ruth Reichl book on hold at the library.
Happy Friday to all crazies!
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Rain-talk about coincidence and comic relief: I just ordered the first of the Gailbraith series, thinking it would be interesting to read JK Rowling for adults. I'm now embarrassed to realize I'm cheesy.. Haha. I hope I will have redeemed myself by ordering The CollectedShort Stories of Amy Hempel, said to have written one of the best short stories of all time, something about Al Jolson's Grave.
In the interest of distancing myself from the cheese, I offer this list up as my penance. It is the 25 women you should read before you die, put together by the Powell's staff. Enjoy! You've probably read them all already!
http://www.powells.com/25-women-to-read-before-you...
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Katy, that is an amazing story and I think all of us here are honored that you have chosen to share it with us. I think it is a good thing to be close to the coast and the ocean, I find just looking out over the ocean to be relaxing and well, we know how Jack feels about it! Running free as a bird.
Interesting on the coloring books, I spent about 45 minutes working on one of the pics and it provides the lovely additional benefit that one can not snack ~~~ while coloring. It should help with my diet! Which I confess to being bad about of late so need to get on it.
I forget know who said that they were thinking of creating some....I think that would be fabulous. It was amazing to me to see lavish books, course as a rookie I chose a simpler one for my first. I think I am going to go back and get one for my sister for Christmas. She is recovering from a messy divorce so think it may be relaxing for her. Wonder if my nephew Ben who is having depression problems might benefit from one as well?
OK, need to head out to gym and then planning on a celebration lunch at the beach today. Today was day 3 of no more back pain and the weather is unseasonably warm so it seems a good thing
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Hi my crazy virtual friends, I had posted here last week in the waiting room before my 3D mammo and US. Thank you for all your support. I must tell you, I had never seen a person (she was sitting beside me) bring a puppy into a waiting room before their mammogram, it was cute and disturbing at the same time. I mean we all love puppies, but well, I guess whatever keeps us sane....
It was determined that this was glandular tissue and cysts, follow up next year. I feel like a bit of a load has been lifted off my chest (no pun) but I have made myself "crazy" on self exams thinking "was that there before?" "is this new?" "should I be concerned?" I don't want to be the girl that cried wolf. My NP offered a MRI, but I don't think insurance would pay.
But I'm a little OCD (it's good thing when you work in anesthesia, but not so much when you are the patient) so I am trying to take a step back and be vigilant but sane...which is so hard to do.
Either way, thank you again for your support. I salute you strong women and men, your humor and your strength is an inspiration. Prayers to all that are waiting or in treatment, remission, etc...
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Katy: thank you for being brave in telling (most of) your story here. I too would have wanted to move to a place without the memories of all that ghastly bleep. And with a bathtub. And space for Jack, and a spare area for guests. Giving up your birds touched a chord with me--I've only ever had parakeets but know that the larger psittacines can be much more than 'just' a pet to their owners.
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Morning Crazies:
Katy, your story is a remarkable one. thank you for sharing it. You are very brave. It makes me happy to think of you in the new place with the tomatoes and the beach close enough for day-trip visits, with Jack and Tutti....not to mention room for overnight visitors since now I want more than ever to come check it out and visit you one of these days....
Rain, glad that you at least have support and a path for the insurance issues. and that it is getting attention: that shouldn't be happening!
EtherGirl: Yay for good news, and you are always welcome to sit and wait with us in CT....
It will be a long day today. Have a jammed day full of meetings on first day back on campus, and a candlelight vigil at day's end. Off to get ready. Looking forward to a quiet weekend and a change to catch up.
Hugs to all;
Octogirl
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Katy, Wow...that was an incredible story. Big, gentle hugs to you!! Thank you for sharing your story with us. I know from experience, it's not easy to share those very difficult parts of our lives. I applaud your bravery. You've been through so much. It's a beautiful thing to watch how you draw on your own experience to comfort others. You give so much of yourself here in Crazy Town. YOU are an AMAZING woman Katy - inside and out. I am so thankful that you are here with us. Thank you.
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Good Morning Crazies!!
NotAgain, Gentle hugs to you. The choice between mx and lx can be so difficult and personal. I chose a lumpectomy due to my past history of wound infections. I went with the least non-invasive procedure. Take as much time as you need to make an informed choice. Here is the 2014 diep link. Hopefully that will help with any questions you may have. I noticed they put some info about a Facebook group where you can see photos.
https://community.breastcancer.org/forum/44/topics/816167?page=226#post_4542917
We will all be right here as you navigate through the process. YAY! No chemo!! I'm doing a very big happy dance for you!!
Sula, I have not seen the movie Amarcord, but I must admit, you have me curious. I will put it on my list of must see movies. Can you believe I have never finger painted in my life?? Hmmmm....I should put that on my bucket list!!
Tomboy, I think that's an excellent idea - you making coloring books!! You should make a Crazy Town coloring book!! haha
Poppy, Big hugs to you. That sounds like a pretty good percentage to me!! I'm also a member of the re-scan of the nodule club - same as you, six month re-scan. I've got one on the thyroid and one on the lung. I was happy to hear they didn't want to stick a needle in them and was perfectly happy to be on a re-scanning schedule.
Littleblue, Good to see you!!
Ducky, Do you get time with that deliciously, chunky cheeked boy today??? Just thinking about him brings a smile to my face.
Lucy, How are you?? You off on a grand adventure or stuck in Crazy Town??
Gaia, Thinking of you. I hope your hip is feeling better.
Rain, It just breaks my heart you're having to deal with this insurance issue right in the middle of treatment. The more I read about your experience, the madder I get on your behalf. I'm glad the press is starting to cover the story. Hopefully that will move things along to a resolution.
PTS, Enjoy your lunch at the beach! Sounds so relaxing and peaceful.
EtherGirl, Excellent news!! Doing a happy dance for you!!!
If it was EASY to be sane, we wouldn't all be here in Crazy Town!! hahaha
I'm glad you were able to get some comfort here. Sending best wishes to you!! Please feel free to join us whenever you need to.Queen, Good to see you!!
Octo, Extra hugs for you again today!! We will all be with you in spirit throughout the day and at the vigil tonight.I'm so glad it's Friday!! It is Friday, right??? hahahaha......last week I got the day wrong.
Wishing you all a pain-free, peaceful day.
Love to all...quiet crazies too.
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