CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
I'm hoping there isn't another thread like this. I did a search and saw one for stage 4, but nothing for everyone else. My very special friend on BCO (Tomboy), and I have talked about a Crazy Town thread for awhile now. I know she will be happy I finally took the bull by the horns!!
I wrote a little story about visiting Crazy Town last year on my blog, and I received some lovely emails from women all over the world talking about how terrifying those feelings can become. I thought I would share that story with my BCO sisters. I know many of you can relate to the craziness of worrying about recurrence or progression. I think my experience epitomizes the crazy place our minds can go. I've found when I can laugh at myself, I always feel better.
"My master bath has its own little room for the toilet. The sink, shower and tub are all in the same room. At night when I have to use the bathroom, I always turn on the closet light which is right next to my sink. This way I don't have to turn on all the lights above the sink. They are very bright and there are a lot of them. I do this so the brightness doesn't wake up my DH. Being the OCD person I am, I always wash my hands after using the restroom – even in the middle of the night.
One night last week, I was doing my usual ritual and I caught a glimpse of a big blackish/brown mark on the upper left side of my chest.This thing was huge. I could feel my heart beating out of my chest when I caught a glimpse of it. I'm sure many of you will know what I'm talking about - that feeling of dread.I ran my fingers over it and it felt raised. I couldn't imagine what it could be – it was SO big. I thought, "Oh great, here we go again, now I've got skin cancer." Then I decided to risk waking DH up by turning on the millions of lights above the sink. Then I got a closer look. UNBELIEVABLE!!……it was a piece of chocolate from a cookie I had eaten earlier!!!!! Apparently it had melted into my chest and I went to bed that way. Can you imagine?? Now if that doesn't give you a good laugh, I don't know what will. CRAZY TOWN!!!"
I have many stories since diagnosis. I call it going to Crazy Town. Some of them are funny, others not so much. I usually go there in the middle of the night when everyone is sleeping, and my mind wanders. There are no trains, planes or busses out of Crazy Town in the middle of the night. I also go there at times when I'm waiting on test results. I hope we can all share our Crazy Town stories. Talking about it has helped me to stay on the outskirts of the town. I've been really good about not visiting lately, but this week it's been a real challenge.
If you have tests coming up, or you just have a day where you're worried more than usual, or if you just want to hang out and chat, please stop in to visit. It is my hope we can have some fun here and get each other through on difficult days with humor, kindness and hugs!!
Much love to all,
Beppy ツ
P.S. If you've just been diagnosed, I strongly suggest starting a blog. Whether it be just for yourself, or you'd like to share it with others. It's been a good outlet to get my feelings out as well as a wonderful timeline to refer back to when needed.
Great info about breast cancer and PTSD:
http://www.healthline.com/health-news/cancer-treatment-leaves-survivors-with-ptsd-scars-031215#3
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My story isn't as good as yours, but a few weeks after my first chemo I was watching tv and brushed my hand against my chest and found another lump and freaked out.
It was my port, duh! I had forgotten about it, but I can tell you I had a major adrenaline rush for sure!
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Welcome Italychick!! Being Italian myself, I love your name!!
hahaha - That's a good one! I didn't have a port so it was one less thing for me to obsess about.
I see you are in Carlsbad. We just recently had a BCO get together in Oceanside with some really wonderful ladies on the exercise thread. If I had known you before today, I would have invited you!!
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oh awesome! Keep me in mind for the next get together!
Half Sicilian and half Greek here. I have been to Italy and Sicily about 14 times, love it!
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I will indeed! We have some awesome CA girls around here.
I see we have gone through the same treatment. Are you finished with chemo and just doing Herceptin now?
I am half Italian and half PA Dutch.
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yes, done with chemo 7 weeks ago, and two Herceptin infusions since then. First one, I felt a little flu like for a few hours, and second one not really any side effects that I could detect. I couldn't do radiation because of prior radiation treatment when I was young, so for now, it is Herceptin and ongoing monitoring.
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Oh good for you to be all finished with chemo. Were you offered Perjeta with the Herceptin? Perjeta was approved when I was in the middle of treatment. I tried to get my MO to add it, but he wouldn't.
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no to perjeta, because I was barely her2 positive, and it was up in the air as to whether I should do Herceptin. They left it up to me! I think the cutoff is 2.2 or something, and I was 2.4 with third level testing called amplification
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Slow and Tomboy.. I just love this new thread... and Slow I can so relate to your story and the utter fear that a blob of melted chocolate on your chest can cause !! HaHa.. It's funny in hindsight.:-) . but... definately not at the time.!!
Italychick.. Yep.. I imagine the fear the port would of caused !! :-)
I'm terrible.. an emotional mess these days.. Even if I have a mosquito bite I will eye it off suspiciously.. wondering if it's REALLY a mozzie bite..or..
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Bravo, Slo! A great topic, and when you said you were going to start it, I knew I wanted to post here. Pretty soon I will tell all of you a shameful and embarrassing episode (mainly cause other people were party to it), but I was racking my chemo- fried brain to come up with a story that actually happened to me, and....I can't come up with a single thing! I KNOW I've had 'em- my bad brain... can't think... UH OH
IT MUST BE CANCER IN MY BRAIN !!!
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Welcome Lucy!! You know by now I'm always thrilled to see you!!
I don't think a story is a requirement to post!! hahaha You know me, I'm ALWAYS telling some kind of story. Mostly in my head.
LOL Tomboy!! We must laugh about these feelings or we will just go bonkers.
Ok here goes. I rarely talk about my upcoming tests on the threads. I may mention it in passing, or I just don't say anything until they are over. This week I went to my MO because I've been so darn tired lately. Sleeping almost all the time. I was thinking I was anemic. So he starts to examine me and asks me how I'm feeling. I tell him how tired I've been, and asked if they can check for anemia. That is common when when you have RA. I casually mention that my neck is still swollen. Well he looks at my neck and says, "Wow, that IS swollen. We need to find out why that is so big." I remind him that he already referred me to an ENT last year, and they told me it was caused by the chemo. So he said it's been too long for it to be chemo related. I also had an MRI of the neck at the same time, due to severe neck pain. I have RA in my neck and eventually they will need to fuse something or another once it becomes more unstable. RA related - not BC related. I've also been experiencing a ridiculously amount of swelling. In my knees, in my abdomen and various parts of my body. Hoping that too is RA related.
Well after a year this neck thing has suddenly become an emergency. He wants to send me back to the ENT, and now he wants me to have a CT scan. He also wants me to see my BS for a thickening/lump I have under my arm on the cancer side. I really think it's caused by the radiation but he wants to make sure.
So that is what has been sending me in the direction of Crazy Town this week. I know many of us keep these feelings inside. I'm definitely guilty of that. But I can hardly start a waiting room thread without sharing my own experience. I was really looking forward to my summer without doctors, tests and crazy town feelings.
On a brighter note....Italychick, do you make Italian home-cooked meals? My mom was the Italian, so I learned the Italian receipes. I regret I didn't learn the PA Dutch recipes while my Grandmother was alive.
EFT
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Slowdeepbreaths I use to, but now I don't eat carbs much anymore, so that rules out all the pasta dishes. I hate breast cancer
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Italychick, You're telling me!
Oddly, I ate very well before being diagnosed. I've never smoked, and was just an occasional wine drinker. I also got at least 30 min. of exercise every day, and my weight was always within normal BMI limits.
I don't make the homemade raviolis too often. Usually at Christmas and when I have special visitors. Carbs have always been my weakness. That and ice cream!!
Lucy, My DH was telling me a story about a fisherman from Australia that rescued a great white shark from a net many years ago. When he did that, the shark wouldn't leave him alone, and formed a bond with the fisherman. Have you heard that story? I Goggled it when he told me, and what a great story. The shark even let the fisherman rub his belly.
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Hi! I love in crazy town alot if the time so I love this thread!
Tomorrow I go see MO for 3 month check and I'm determined not to talk to her about my fears or bad feelings. I'm SO tired of not feeling good and not ever really getting resolution with her. BUT, I'm really starting to worry about what ifs. What if my blood work looks off, what if I start having a panic attack from be so close to the chemo room, what if I feel sick at my stomach when I walk in......etc.
I see BS this week too and I'm thinking she is gonna want a scan.
I hate breast cancer too
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Thanks to Tomboy i now join you in crazy town. Not only do I live it-I work it.
Funny odd feeling lump on the back of my thigh. Hard and somewhat painful. Stayed several days. Just as I was going to schedule the ER appointment for cancer of the thigh--there was a change. The ingrown hair--was gone.
I never got sick. Never. And now. Every little thing I am sure is cancer of the toenail to the nose hair.
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Welcome T&C! Good to see you here. What if's are horrible. We will all be in your pocket tomorrow. Sending you best wishes for a good report. Please let us know how it goes. It weighs on me to think people are alone with these feelings.
Susan, Welcome. hahahaha....I feel like Tomboy and I are Crazy Town experts. We've sure talked about it enough.
Like you I've let my imagination run away with me. I'm getting better at trying to train my mind to live in the moment. But let me tell you, when you feel that lump or sharp pain, all logic seems to go out the door. It's nice to have people around to pull you back from that ledge and talk you down.
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O YAY! Tang, you found us! Please stay!
A warm welcome to SusanHG123 !!! You guys, I met her on the triple positive thread, where she made me laugh till I couldn't see! Thank you, Susan.
Italychick. I am so sorry, I completely forgot to welcome you here! Glad you found us! Beppy is tremendous, you will see! If anyone hasn't read her blog yet, there is for sure a treat in store for you. Now we have two great writers on board.
I promise to start delving into my notes since the day of DX. I know I wrote some of these fears down!
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Good morning fellow crazies!!
Thinking of you today Tang!!
Tomboy, you are just way too kind to me. No Crazy Town for me last night. My MO really wants me to do a digital mammogram. He talked for a good 15 minutes on how much more accurate they are and not like regular mammograms. They really are relentless. I got two calls last week. Temping to put them on the DO NOT CALL list. hahaha
Got my CT scan scheduled for the 29th. Waiting for the ENT and BS office to call. Will be doing blood work today.
Hope everyone is doing well today. Hi Lucy!!
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Hi Everyone,
Does visiting Crazy Town make you irritable? If so, I think I'm there.
Hate all of these continuing tests. Every time I go in for tests, I know something bad could be found.
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Great to see you here Poppy!!
I think Crazy Town and irritability go hand and hand.
Like I said, I went in to get my blood checked, and I came out with more visits and more tests.
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Well I'm back and I appreciate all the good thoughts
My step-mother went with me today and I really appreciated her being there, it helped me to stay calm. It was also nice to have her there because she validated me with my thoughts on my MO not giving answers and talking in circles. I'm really starting to think I'm gonna shop for a new one, has anyone done that after active tx has ended?
Everything looked good except my blood sugar. She's gonna have an A1C done, but I've got a bad feeling. So now I'm going to be dealing with diabetes...wee! It's my own damn fault, I'm fat and brought it on myself.
Oh by the way, anyone else hear that song "Funky Town" when they read the title of this thread? lol
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Tang, I think our MO's must take a course in circle speak. I'm wondering if they all speak the same language!!
I've been with the same MO since I started. I didn't like the first one I met with, so I got a second opinion outside of my group. The second opinion doc recommended this one because he worked with him before. I've been happy with him overall.
That's great news that everything C related looked good!! Hopefully the other test turns out to be negative too.
I love the song Funky Town! I used to watch the show Parenthood, and their code word for $ex was Funky Town. hahaha That one always gave me a chuckle.
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Tang, I did change MO after active treatment, I did not care for the SE of Femera, and he acted like a spoiled little brat, and would not discuss trying the other brands. I live in a small town, so have to travel either north, east, west or south of my town here in Central Texas anyway, so I found a kind and compassionate MO in Fredricksburg. Same distance as it was to the former one in San Angelo,76 miles one way, and I am so happy I changed. Fr. burg is a fun place to visit too. I am going for my annual check next week, 2 days before my 6 year cancer surgery anniversary date. Always a bit apprehensive and worried about the whole thing, that will probably never change. I do the tumor marker lab work he orders here in my home town a week before so he has the results when I go there, usually I see his PA, and she gives me a breast exam, then orders my Mammogram for me. I don't see any other breastcancer related docs. Where is Royce City? I can PM his name, as I don't know if we can post such things here.
Best of luck.
Slow I'd go for the digital mammo, I am gonna ask if that is possible for me, I get a letter each time I have a Mammo that I have dense breast, maybe digital is better. Just my thought.
Best to you too
dsgirl
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Welcome to this thread dsgirl! Grab a chair and stay awhile!! We will all be in your pocket next week. Please let us know how it all goes!
I've had a total of 5 lumps found in my left breast since '99. Two were found after chemo and surgery. Not one was found by mammogram. I found them all. My MO was really talking up the digital mammogram. I told him I would do some research and consider having one. From what I've read, the digital mammogram exposes you to more radiation. They push the mammogram so much at my facility, they even sent me a registered letter letting me know it's overdue. They did approve a bilateral ultrasound at my last checkup. Ultrasound was able to see all of my lumps.
If anyone else has any experience with digital mammograms that had unsuccessful results with a regular mammogram, I'd love to hear about it.
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Welcome,dsgirl!
Tang, I am STILL thinking of changing TX place. There are just too many weird lumps that only I am concerned about, near the cancer site. And I do believe that I have annoyed my team (ha,team, they never even really made me feel like they were on my side) to the point where they wish I would just go ahead and die. Since I don't have any tests or anything else until September, I am going to try and "interview" a couple of other places and its people!
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Slow... amazing story about the shark.. I'm heading off to google it now..
Thinking of everyone going through tests.. I'm already on the journey to Crazy Town , and my tests are a month off.. Scared of the mammogram ( which didn't pick up my IDC at diagnoses either..).. and scared of the tumor marker blood tests that my doctor has requested... I hate, hate cancer too.!!
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Ahh.... the train to Crazytown, I know it well. I was sitting in my chair and I noticed I had crumbs on my shirt. As I was brushing off my chest I felt something.......a lump the size of a pea. How can that be??? I just saw the Onc last week and it wasn't there!! I felt under my shirt....OMG I can't go there again......It feels HUGE thru my bra.....feel under my bra and it was there...... a piece of POPCORN!! It's the little things that send me to that crazy place.......Now I'm on the 6 month watch & wait because they found something on the mammogram.....sigh.....
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SlowDeepBreaths: I have had 5 lumps since l983, 2 found by me, rest by mammogram or ultrasound, only one was cancerous, found by me in 2009. I did not even think of the radiation exposure being more with a digital, will ask PA next week, seems like every year I procrastinate a bit getting the mammo. so I can't have one until after middle of Sept. I had plenty of radiation already, 33 treatments in 2009, besides the mammos over the years.
Thank you ladies for the kind welcome to this thread. I marked it as a favorite, so I can find you again
dsgirl.
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dsgirl-
Royse City is east of Dallas....about 30 miles east of Dallas. So there should be plenty of MO's in this area that I could choose from. It's just a matter of doing it, I think I got the push yesterday.
Tomboy-I know what you mean about the annoyance factor..I feel like my MO is annoyed and irritated with me too. She actually told me in April that it felt like she'd been treating me for way more than a year, she was "joking", but I'm not so sure. She then told me that most patients would have fired her for that remark, maybe she was hoping I was going to be one of those??
I did feel a lump back in March that was biopsied but it turned out to be fat necrosis. I feel that stupid thing all the time and crazy town comes and I wonder...what if they were wrong.....
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Lucy, that fear is very real. We will be right in your pocket when you go through your tests!! Stay busy...The goofy times we've had on BCO has helped me tremendously. That shark story was so amazing to me. A great white shark with gratitude for being saved. I don't think I've ever read anything like that before.
Welcome to this thread sewingnut!! hahahaha.....the popcorn gave me a good chuckle!!
Wait...wait...wait. Waiting really is awful. Are you on the back or front end of the 6 mo's?? I'm assuming you like to sew considering the name you chose. I've never been very crafty, and I'm always in awe of people that can sew, crochet and knit. My DD is very crafty....certainly didn't get that from me.dsgirl, happy to hear you put us in your favorites!! Wow, you've had five lumps too? I often feel like a lump making machine. I came up with my own Crazy Town word for it - lumpanoia.
Tang, After chemo and surgery, I found two more lumps - one they did a core biopsy on, and the other they just did an ultrasound. The core was B9 and they put a clip in that one. I always wonder about the one they didn't biopsy.
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