CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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that's long time to wait indeed! If you can't get it changed you better get the "E ticket" booklet for Crazytown. You did come to the right place. We do get it.
( I just dated myself- does anyone remember when instead of a one fee entry at Disneyland they had ticket booklets? To ride the Matterhorn your ticket had to say E.
I guess Crazytown should have F tickets! Anyone wanna hazard a guess what that stands for? Like I always say F is for Cancer. I have the initial F on my charm bracelet. I love it when people walk into that one. Cancer has turned me into a mean old crazy person! Love to sound off on that one!
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Clan.. That is too long to wait..!!
Ducky.. Ha.. You are a very wise owl.. What ypu said is very true.. Wether routine or diagnostic they are looking for cancer in both ! It's ridiculous!! I don't even know if 'll be out of pocket for mine until I get there Monday !!
Jan.. That is awful about being I'm a car accident ! Ugh.. Seems like there is always something :-(
PTS.. I'm definitely addictied to this thread too 😃
Kathy.. Have fun gardening.!!
Gala.. I think being out in the garden is good for the soul too.. The ocean , and the garden are very healing..
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Here in Canada, results often take up to 10 business days, and it's summer vacation so some of the radiologists are on vacation. The tech said if it was really bad someone might call ahead of time.... so I've been making my hubby check the missed calls because I don't want to see the cancer centre number on there!
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Yes, definitely driving myself crazy waiting....the days aren't as bad but oh those nights!! If only I weren't out of Ativan!
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Slow.. This is for you.. When I'm worried and stressed I actually say it now.. and it does help.!! HaHa!
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Clarrn.. Gosh.. That is horrible to have to wait that long. :-( Could you just ring and ask for the results? Say the wait is upsetting you? ..
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Well, I've been in Crazy Town, or more accurately, Cranky Town, for a full week. Much better now. A few days ago my PET scan was posted, so I logged in and saw that it mentioned activity in the brain! My MO was still on vacation, and I pretty much decided that rather than call and possibly receive very bad news over the phone, I'd wait for today, when I appointments with the MO covering for my own MO and the breast surgeon. So I had the first appointment with the MO's nurse and mentioned what I'd seen on the PET, and she just laughed. I was reading the area of the scan where they described normal activity. So I don't have brain mets. Woo hoo!
Met with the breast surgeon, and he pretty much said congratulations, the chemo has worked beautifully, so let's schedule you for a bmx. Said come back in three weeks and we'll go over details. No mention of plastic surgeon; maybe that will come in three weeks. Someone took pity on me and asked if I'd like my own MO to call me next week. Um, yes please! Breast surgeon is completely charming, but I want to grill MO on, well, everything. Then had 16th Taxol/6th Herceptin/6th perjeta. Walked out three hours later with thousands of dollars worth of drugs sloshing in my system. Bought a diet root beer and took the subway home.
So the good news: I don't have brain cancer. The chemo is working. And oh yeah, I lost two pounds.
And, sigh, bmx.
I've really enjoyed reading your posts during these past few days when I haven't been posting. Welcome to new members and have a good weekend, everyone!
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YOO Rainey, send up the balloons and celebrate! whatever floats your boat and makes you feel good, have a terrific weekend
weather is good for the NYC area so enjoy!
leave Crazy town if only for the weekend
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Boy you crazies are a busy bunch. I can barely keep up with all of you!!!!
gaia, nice blog! You may want to think about putting it in your tag line. Then it's always there for anyone that wants to check it out. DH stands for dear husband. Here is a link to the abbreviations used on BCO.
Lucy, I never had a 3D squish-o-gram. I hope it goes well for you though!! I LOVE that shirt!!! I think I may order one and wear it whenever I go to an appointment!!! That should be our motto here in Crazy Town.....WHATEVER!!
octogirl, I spent quite a bit of time picking out the perfect wig. I wore it at the beginning, but towards the end of treatment, I just went with my fuzzy head. Except when I was around the young kids in the family. It freaked them out. It's difficult to say if you'll be up for a trip. We all react so differently to chemo. Some women breeze through. I wasn't one of them.
PTS, I am so glad you are here with us! ALSO glad your back is feeling better! I hope it keeps progressing for the better. Pain can be very draining. I will send you one of those desk fans!! haha
Ducky, that is awful they make you pay for a mammo. The medical establishment pushes you so hard to have one, they should cover the cost.
JAN, Oh no!!! I'm so sorry to hear you got whiplash!! Best wishes for a speedy recovery!! Also sorry your new car got crunched. My DD was in a car accident a few years ago. Her new car was less than 6 months old. It was determined her fault. She rear ended someone when traffic stopped suddenly on the freeway, and someone did the same to her. The guy she hit was driving a truck and didn't have very much damage. He also wasn't injured and drove his car away from the accident. Four days before the two year deadline was up, my DD received a summons. He was suing for 36 million dollars. Also, 100,000 property damage for his OLDER truck. He also sued the guy that hit my DD for 36 million, and his father who wasn't even in the car for another 36 million. My DD's insurance company settled for my DD's maximum. They are still arguing the property damage. Now I know why our car insurance is so high.
Tang, you are not alone in Crazy Town. You're in good company!!
Clarrn, welcome to our Crazy Town thread!! That time-frame is ridiculous. Maybe you can call them and ask them to release the results over the phone?? My BS always calls me right away, and my MO emails me. I'm sure I'm labeled the cranky patient. Do I care??? Not really. I have zero patience waiting for results. We will try and keep you out of Crazy Town in the meantime!! I used to play the BCO games late at night as a distraction. Plus, I met some wonderful ladies on there!!
Katy, I DON'T remember E tickets. I must be MUCH younger than you!! hahahahahaha
YAY Rain!!!!!!!!!! Doing the happy dance!! Now go enjoy your weekend and do something fun!!!!0 -
HAPPY DANCE FOR RAINY!!!
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Hi All you Crazies
Rain that's great news. Where are you doing treatment in NYC? I'm also in NYC, well Brooklyn now after being on Bleecker St in NY for over 15 years, but I like the change of pace and it came at the right time!
Slow thanks for the encouragement- did you mean the fcjcuice blog or the rasa blog? either way thanks
I met with MO today- it's only my second time with him, but he is very seasoned and feels like a human being- in fact when he knocked on the door to come in I said 'we're busy in here' and we all got a good laugh and he said I'm glad to hear that.
We have me set up for targeted therapy with Herceptin and hormonal therapy with tamoxifen. I would appreciate hearing any and all experiences that any of you may have had with these therapies. I do realize that everyone is different and that I am doing H on it's own and not as it is often coupled with Perjeta. I also realize many may not have experienced these therapies separately from chemo, but I'm throwing the question out there.
Doc said- yes you've got these mets, yes they are pretty spread out, but you are not dying..... well we are all dying and I don't mean just us wild and crazy bc ladies- but you get the drift.
I'm feeling a combo of giddy relief and deep exhaustion. We drove home ( no accidents and sorry to hear about the accident and whiplash JAN) and had tacos and I was bummed cause I really wanted a margarita but they had them batched out and it was awful so I settled for a shot of reposado ( ladies I grew up in the food industry so you will notice a lot of food and wine talk here- thankfully I have balanced it all out with my 35 plus years of yoga LOL)-home on the couch now and just crashing.....
At some point I'll get all this news to my close family, but I find it can be very draining as people are human and their very human fears can get in the way of just being. There's time for that soon.
Oh Katy, I'm actually having lunch with Amy Berman tomorrow- the woman who is both the recipient of and advocate for palliative care as part of treatment. I am imagining I will gather lots of new insights and will hopefully be of service with whatever info I gather.
Ok I guess I'm done blathering for the moment.
More to come
Hugs to all.
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Hi all you Crazies
Love reading and catching up with all the news.
I do get cross with doctors who give definite predictions. Luckily for me mine didn't. My data are actually a bit different from what is recorded because they are rather more complicated. Any way my story. I am heading up to nine years since dx and according to my BS they really don't know how. They evidently had given me two years until it spread. Oh yes have had some hiccups but each has been dealt with as they occur. The BS has said they really don't cannot work out how or why I so far have beaten the odds. There is another person as well who was similar to me and the docs use us as examples of treatment when considering new treatment plans. Now no one said anything until I was five years out. Stats are just that and can be used in many ways. I do still worry over any strange ache or pain and take it serious as do my doctors. I say strange because I have other painful medical conditions.
I have friends many from BCO that are very many years out from a stage 4 dx and living life to the full. One you new stage 4 girls should look up is ChrissyB. She has a question thread in the stage 4 forum and is a font of knowledge. Also very kind and caring.
So thinking of you all and Gaia never never be sorry about how you feel. We do understand and will try to help. Try to stay away from Dr Google as well. It can really give you heart problems.
Big hugs to all from the mother hen of OMG.
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Katy, I remember the ticket books at Disneyland. The A and B ticket were not good for any of the cool rides.
Last week I got new license plates for my car, and it is so appropriate: FYC 6500. At least that is what I thought when I first looked at them.
Spent the nite at the ER, due to excessive bleeding, huge blood clots, from the Colonoscopy, this may be my last one. It is always mentioned that it can happen, and get medical help right away, but it never happened to me before, and since I live alone, and did not want to call 911 and wake up the whole neighborhood, I saw my neighbor's son was up watching TV, so I enlisted him to take me to the ER in my car. Bleeding and clots stopped by 2:30am and they let me go at 10 am, glad I send him home right away, so he didn't have to sit and wait that long. So still in Crazy town.
Hugs to all that are hurting or worried or waiting for results, we will get us all fixed up somehow.
Dsgirl
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Dsgirl that's terrible! How are you feeling now?
Alyson thanks for the pointer to ChrissyB I will check it out-
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jan69
Hope they don't find cancer in your car when they OPEN it up~!
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Rainny- woohooo! Not only not brain mets, but your brain is actually active where and how it's supposed to be I know that matters to you. COULD NOT BE HAPPIER FOR YOU!!!!
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oh no dsgirl, hope you are feeling better! that sounds awful, glad you found someone to take you in!
Happy dance for rainy, yes!!!! and Gaia glad your visit with MO went well. It's Friday! FYC and TGIF!
hugs to all
Octogirl
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oh, and I admit, I remember E tickets...in fact, Disneyland is a year younger than I am! and yes, I've been going on an almost yearly basis since I was in diapers. I believe some people have the Disney gene and some don't. I do. It's a weakness....
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clarrn, not sure where in Canada you are, but at my hospital I had my bone and CT scan results within 48 hours. Although it might differ from centre to centre, I'm getting a new CT at a new place and not sure what the policy is. You might want to check with your family doctor as well, in my case they sent the results to him right away.
I'll be joining you guys in this crazy town. I have a follow up CT of the abdomen scheduled for next Thursday. They had found liver lesions suggestive of hemangioma in my staging CT in January, radiologist recommended an ultrasound which I did and that too agreed with CT radiologist. Then we did surgery and chemo and now in the middle of radiation, my radiation team called to schedule this follow up CT so I get it done while I'm at the hospital everyday. I am dreading it and wish I could just not do it. I almost rather live in denial than know! It is a long long wait.
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rainnyc my breast surgeon told me to meet with the plastic surgeon before the mastectomy. If I have to get one (hoping it won't happen), she said that both she and the plastic surgeon would be involved in my mastectomy. So just food for thought, maybe ask a lot of questions about the process
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I am in Alberta. I waited 16 days for biopsy results too. It's the lack of pathologists/radiologists from what I understand. And I want to work in the cancer world with half of these people so I can't be THAT patient lol.
Oh well. I am going to try to keep busy!
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Wow!!! My fellow crazies, you all have had one helluva week.
Ducky,
I think if they want to do Three -D and charge you, extra you need to demand you ought to demand they at least have to give you the Three D glasses!
Rainn,
So glad your brain is firing on all cylinders and lighting up in all the right places. Good news!
Gaia,
So glad you like your MO, he sounds really great. A sense of humor is always a plus. Having a doctor who works with you and "gets" you is worth it's weight in gold. I'm doing herceptin on it's own now after 12 weeks of Taxol/ herceptin. I asked for a 90 minute infusion as I heard from an MD friend who is also one of us that it's easier on your body that way. Anyway that's how I've been doing it and so far so good. My herceptin buddy who's stage IV and has been for nearly 10 yrs is doing both herceptin and perjeta with no problems.
A breast oncologist friend from Tokyo told me last year when I was diagnosed that they're actually doing some trials in Japan right now with just herceptin. He's coming to a big breast cancer conference at UCSF next month and he'll be at our house for dinner so I will certainly be asking him all about that. Your doctor seems to really have a positive take on things which is a great help. I was diagnosed the first time 25 yrs ago triple negative and the hospitals and Drs I saw back then gave me a poor prognosis, then I met an MO who was very calming , he couldn't make any promises ( I was trying to get odds out of him) but he said that whatever happened we'd handle it. It just made me feel so much better.
Jan,
Your new car??! Nooooooo. Glad you guys are ok , who says dr appointments can't be hazardous to our health!
I'm doing a big Indian feast tomorrow night so I've been cooking all day and will be cooking all day tomorrow too. I'm making a goat korma and about 8 other dishes ( I've been cooking Indian food for 25 yrs) I'm also cooking a lot of our own produce from my garden
The round bumpy thing is what is called bitter melon which has to be treated before it can be eaten as it is really really bitter, but delicious when cooked. Below that is my goat korma ( picture from a previous cooking session) I'm serving an orange blossom ice cream with pistachio nuts, and serving my own home canned mango chutney and homemade yogurt in a raita. All in all there are going to be about 8 vegetable dishes, plus a rice and dal dish chapattis and of course, goat! Tuesday I have my MUGA test and then Friday hopefully herceptin. I promised the MUGA test guys at the hospital I'd make them Mexican wedding cookies this time so, there's going to be a lot of cooking going on for the next several days.
Ok, so now to see what else is going on in Crazy Town and what I've missed
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Sula- making my mouth water again. Great food pics and stories.
Gaia-Hope your special lunch is enjoyable, informational, and inspirational.
ErenTo- welcome to CTown! As SlowDeep says, pull up a chair and get comfy.
DS- absolutely frightening and hassling experience after your colonoscopy! Adding insult to injury I'd say! I about foot my coffee up when I read your new license plate. BAAAAHAHAHAHA.
I'm glad you and Octo remember the E tickets too. I grew up in Orange County and had birthday parties there when i was young. I got to invite a few friends, and somehow Snow White and Mickey arranged to hang with us for awhile. It was a magical place.
This morning I almost choked to death. Seriously. I was drinking coffee and reading this thread, laughing, and somehow my throat closed up and I could not breathe. I knew there was no food stuck but it felt like I needed a Heimlich.
I was gasping for minutes. Finally forced myself to get erect so my esophagus and other breathing apparatus had their best chance of staying open and tried to make myself relax. As soon as I could swallow I took a clonazepam. Hoping it might relax the muscle. Anyway, I expect this is either cancer already or the severe jolt to my system will cause some. And I will be sore. Who knows what dx I'll get out of that
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hmmmm, loving all that food. I am going to a picnic but not making anything nearly as fancy. Me making hummus and hoping the group likes it
dealing with cancer of the neck this morning, think I got it while having my last chiro visit as he worked on my back and likely pushed all the back cancer to my neck
make sense?
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Morning To All
Sula, thanks for sharing your experiences. AND I can see I'm going to have to up my game here and start posting food pics. May I be your assistant food editor for the newspaper? It also spurns me to get back to my regularly posting on my rasa blog. After all, now that I know the cancer is out of the barn ( for now) I can pause 24 /7 worries about hair, eyelash, etc cancer and get on to just being plain old crazy about food.
Katy, I will surely keep you (and all) posted about whatever I gather from the lunch. And please don't chock on your coffee, but I know what you mean, there are some fiercely funny ladies here!
To all: I am now considering starting a thread on the topic of 'how we practice self care' or how we care for ourselves through food, movement, prayer, meditation; the process of cultivating inner and outer resources or whatever- do you think this might be of interest here at bco? Somehow merging this new journey with my passion for wellness, food and resource hunting- a place for people to share resources, ask questions etc.... I just don't know if there are any limits or taboos on this site. I know that might sound like a strange concern but I was dismayed to come across some bickering on another thread for stage IV and last thing I want to do is start a brush fire in this place (bco) that I have found as a resource. I figured if I could run it by anyone it would be you fine ladies of Crazy Town!
hugs to all and more later- Enjoy your Saturday!
Christine
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Sula, the food porn is driving me crazy!!!!! You know we all want to come to dinner at your place, no?
My new cancer last night was much less scary than your choking cancer Jackbirdie: just a new leg cancer because my shin was achy for some reason....I have to go for a walk today to shake it off!
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Sula
I am also hopeful that your passion for food indicated that you haven't experienced any changes to your sense of taste which I understand is a possible SE of herceptin.
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gaia, I think that is a great idea for a new thread. Do it!
Clarrn, 16 days sounds awfully long. Hope you will get your results sooner this time, the wait is excruciating.
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Dear all, thank you so much for your good wishes and dancing frogs! Yes, I quite like my brain as it is and am very happy it has not been invaded by mets! Not looking forward to bmx have suspected we were going in this direction from the beginning, so I've had time to get used to the idea, and this was only the confirmation. Will definitely ask about a plastic surgeon consultation; I've started lurking in the reconstruction threads. Still waiting to hear results of a rib X-ray as the PET suggested possible activity, but should get that early in the week.
Gaia, I'm also in Brooklyn. I'm being treated at MSK and getting chemo two weeks out of every three at their Brooklyn infusion center on Atlantic Ave. Where are you being treated?
Katy, I'm really sorry, but I'm not sure you should be on this site. I love reading your posts, but I would hate to hear that BCO was somehow responsible for a member who had laughed herself to death via coffee! But yeah, there is some seriously funny stuff on here.
Sula, love your food porn. I went to the greenmarket this morning to get fixings for gazpacho, and somehow came away with basil in pesto quantities, mussels, and cantaloupe. Going back out in a few to pick up some other things (we live across the street, so I often go out more than once). I need to ask about when canning quantities of tomatoes will be in. If bmx is happening early fall, I want all those jars nicely filled by then!
Slow, I really like your photo. Nice to see hair growing back.
dsgirl, sorry you were in the ER. Sounds like a rotten time.
Good luck with scans, ErenTo.
And a delightful Saturday to all....
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Morning crazies. It is not only laughing oneself to death this thread also causes great problems with bladder control or maybe it's only old ladies who have that problem.
Didn't sleep well last night loads of the C happening shoulder, arms, fingers, and spine as well as restless legs which must be the C now must make a cup of tea.
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