Sep 7, 2017 07:16PM Molly50 wrote:
Hi Lucy, we came home today. He's not feeling great but we need to be home.
For those who have met on Breastcancer.org and want to continue growing their cybersibling friendships beyond cancer.
Posted on: Jul 18, 2015 08:14PM - edited Feb 21, 2016 12:31AM by SlowDeepBreaths
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:
Posts 12751 - 12780 (13,166 total)
Sep 7, 2017 07:16PM Molly50 wrote:
Hi Lucy, we came home today. He's not feeling great but we need to be home.
Sep 7, 2017 10:27PM octogirl wrote:
Molly, hoping Wyatt feels better soon. Glad he is home!
Sep 7, 2017 10:35PM rainnyc wrote:
Molly, so very glad for the positive results and that you're at home. I hope he feels better soon!
Sep 7, 2017 11:18PM Di2012 wrote:
Happy to read Wyatt is home from the hospital and his his surgery is OVER!.....sending hugs to both of you.!!!!!
Did you have your MRI yet?
Sep 8, 2017 10:21PM octogirl wrote:
crud...more tests to keep me in Crazytown!!
So, as I am fairly sure I've mentioned, I am having both knees replaced...starting with the right knee scheduled for November 2nd. So today I had the first of various pre-op tests, an EKG. I expected it to be nothing (last one I had was just before my lx surgery two years ago, and all was fine).
So...they found an abnormality :-( crud. The cardiologist told me what it was, but I was anxious and didn't catch the details. Something about something slowing down when it shouldn't? I should have asked a second time but I was just really anxious about the whole thing. He does think it is probably nothing, just a measurement issue, but wants to do a stress test as a follow up to be sure all is well before clearing me for surgery. He suggested a chemical stress test, assuming I couldn't do a treadmill (given state of my knees), but as soon as I heard the description for the chemical version I told him I wanted to try the treadmill, since I think I can do it assuming there is a bar to hold onto (which he says there is). Last time I did a treadmill test of this type had to be thirty years ago as part of a medical study I was in (as a member of the control group). But I just would rather try that then go to the chemical version right off....
and then, he wanted to take my blood pressure and of course it was high (I have a real issue with having BP taken). So now I am worried they may not clear me for surgery. Talk about anxiety producing! (it is a real QOL issue for me to get new knees).
Treadmill is next week, along with an ultrasound. and a meeting with MO, (regular check in), all in the same week. Arghgh. I am not a happy camper.
As if bc wasn't enough. I've never felt this old or in such poor health, even though really, I was feeling fine till I went to the doctor today. I know all of you can relate.
Having a bourbon and soda. Screw it. One can't hurt, can it?
Thinking of all of you, especially those in harm's way in Florida and elsewhere. Stay safe this weekend, all
Sep 9, 2017 02:47AM ChiSandy wrote:
Octo, back when I had a syncope episode in 2013, a chemical stress test had been ordered. But I had a tough time in the morning getting an I.V. started for the nuclear heart scan dye. And though I had read about the chemical stress test ahead of time, when they told me what to expect, I said, “screw it—I have one good knee, I’ll do the treadmill.” And so I did…in UGGs, no less. It showed a slight left ventricular hypertrophy, but both Bob (a cardiologist) and my PCP said it wasn’t really LVH.
Having a devil of a time riding herd on my GERD, now that I’ve been yanked off my PPI in order to better absorb my iron. I was put on an H2 blocker—but even that’s keeping me from absorbing the iron, judging from my regular, abundant non-black poop. Screw it—if I have to choose between GERD & anemia, I’ll take the anemia. The only symptom is brittle nails, but I’ve had those forever. And if the GERD goes on long enough, it’ll cause a GI bleed (like I had in 2013) and aggravate the anemia anyway. Part of me wants to cut to the chase, eliminate the middleman so to speak, and see a hematologist. My PCP discovered the mild anemia, and my MO says it’s not serious enough to call in the heme-oncologist. If it gets bad enough, then I’ll opt for iron infusions and/or perhaps get fundoplication surgery for my hiatal hernia (I can actually feel my stomach pooching up into my esophagus when I’m doing exercises that require me to bend over).
Something truly weird (non-medical) happened today. I ordered a royal blue travel knit ensemble from Magellan’s—3/4 sleeve dress, swing jacket, shell and pants. The package arrived today. All good, all fit…but then I opened the plastic bag labeled “Royal Blue Travel Pant L,” only to find it contained a lighter blue sleeveless dress instead—and instead of the Magellan’s label it said “Creation—XL.” I called customer service, and they were flabbergasted too—neither of us could explain how a dress I never ordered ended up in a sealed bag labeled “pants.” I told them I shouldn’t have to pay postage to return it. At first, the service rep said “unfortunately, you do, but we’ll credit your account.” I said that wasn’t fair, because it was their or their supplier’s screw-up. Instead, she consulted her supervisor and said “Our bad—keep the dress. We’re shipping you the pants.” Now I need to find some sort of jacket to coordinate with the dress—I don’t do sleeveless in public, not even in the gym. Not with my upper arms. (And because of the LE risk, no way I’m getting the bat-wings removed even if I lose the fat in them).
Sep 9, 2017 11:19AM proudtospin wrote:
gee sandy, sounds like a funky packaging goof
Well next week is a big week, got a checkup with primary doc, then pet scan then the end of the week a meet with onc to go over results of the pet and have another chemo treatment. Cross fingers that this drugs working
Hard to see folks loosing so much with hurricanes, lived through sandy here in jersey and it brings back memories
Sep 9, 2017 06:18PM Molly50 wrote:
my MRI was normal, thankfully. Doesn't stop me feeling dizzy or walking into walls and people. Wyatt's doing better but still sleeping a lot. DH and I spent the night at the beach last night for our anniversary. A full night sleep was a luxury!
Octogirl, I hope you get cleared for surgery. Hugs for you, Sandy. Crappy choice between Gerd and anemia. MO appointment Tuesday. Hopefully my blood work comes back in time. With all of Wyatt's stuff I forgot to get it done. I hope your appointments go well, Iris. Sorry if I missed anyone. Hugs to everyone. M0mmy, how are you doing?
Sep 9, 2017 09:35PM duckyb1 wrote:
I have very bad knees, but also had a HA, so every year I have to get a stress test with the injection.........The first time the tech said "your taking the shot right'......I said "what shot"....he said so you don't have to walk the tread mill...then told me what to look out for if i get it.....
I told him.....no thank you....I wi ll take nothng that shoots my heart rate through the roof unnaturally.........so I walked it then, and have ever since.....is it tough....yes, but only because I have Asthma and get out of breath fast.....but I can still make it.....thank heavens...but then again.....that was this year.....LOL.......
Sep 9, 2017 10:11PM ChiSandy wrote:
After a brutal couple of days (kinda like the acid bubbling below the surface, resembling the LaBrea tar pits) doing the kludge with Zantac, TUMS & Pepcid Complete, I decided to try a Pepcid before dinner and go back on Dexilant tonight, weaning off rather than going cold turkey. Bob will write me a scrip for the 30 mg. version to use for weaning, should the H2 blockers be insufficient to prevent breakthrough on alternate days. He also says I should override my PCP, get an iron infusion, and then see a heme-onc about doing a smear and MRI (not yet a marrow aspiration) to rule out myeloid cancers. (My MO says that’s jumping the gun).
Sep 10, 2017 09:58AM proudtospin wrote:
Sandy, do hope your tummy isues get under control
I have a pal in florida, sent her email and hope she is able to respond, best of course would be her saying she was riding out the storm at her Jersey relatives
Sep 10, 2017 03:54PM ChiSandy wrote:
My FL relatives are all okay. One’s in Seattle (in the city, not near the fires), my cousins are at their oldest daughter’s mid-floor condo in a reinforced (post-Andrew) high-rise in Davie, inland near I-95; their son the Daytona cop is staying put in case he’s called in for rescue & recovery. He posted a pic of his “hurricane prep:” sandbags, boarded-up windows and a fully-stocked bar.
Sep 10, 2017 07:20PM octogirl wrote:
Sandy, glad your relatives are ok, and hope the tummy issues get fixed! Thinking of all in Florida and the surrounding states..
and thanks for the encouragement about the treadmill, Ducky and Sandy. It helps! Ducky, I feel just like you did about the artificially increased heart rate. Last night hubby and I had dinner with some friends, the husband has had major heart surgery and has had the stress test more than once...talking to him and having him describe it was also very reassuring that, while it may be a challenge, I can do it! I just want to get all the darn tests done and get to the surgery. Onward...
Iris, crossing my fingers for you for next week!
Hugs and love to all the crazies.
Sep 12, 2017 05:53AM Lucy55 wrote:
Just watching the news ..thinking of you all who have family and friends in flooded areas ..how frightening !!!
Octo ..sorry you have to go through more tests ...when do you have the stress test ? I hope the surgery can all go ahead on due date for you ...Guess what .?..we have sold !!! ... buying into and building on daughter's property ..I'm so excited !!! 😃 You will need good knees to come and chase the Wallabies next time you come ..I miss you !!!
Molly ..how is Wyatt ?? Hope all is going well for you both !
Iris and Sandy ..so glad your friends and family are safe !!!
Ducky ..so good to see you here ..I have major HA as well ..ugh ..it's no fun ..I was driving to my daughter's this morning ..about 25 minutes away ..as soon as I started driving I noticed the sole of my foot was itching ...the whole drive I was imagining I had a big black itchy mole on the sole of my foot !! 😵..crazy ..
Iris ..in your pocket for your pet scan ..hoping for great results !!!
Mommy ..how are you ???
Rainy and Di ..Hi !!
So ..as I was saying to Octo ...we have sold our house ..we didn't even go on the market ..but people just asked to look through it ..and bought it !!! Crazy ay..but I feel it was meant to be ..this actually happened about 6 weeks ago ..they wanted to move in at the end of August ...but we put settlement off until October 31 ..lots to do between now and then !!!
Hugs to all xx
Sep 12, 2017 06:57AM M0mmyof2 wrote:
Doing okay. Heard from our friends and relatives in Florida. Everyone is okay and no damage to their property.
Sep 12, 2017 01:06PM octogirl wrote:
Lucy, that is exciting news!!! Wish I was there to help you move a cactus or two! :-) Miss you too!
My stress test is later this am. Keep your fingers crossed for me, all. Not looking forward to it.
Sep 12, 2017 02:41PM GmaFoley wrote:
Great news Mommy - my friend is ok too.
Ladies - had my "No touch" physical with my new primary yesterday. I know things change and we have to adjust but something about what happened yesterday just doesn't feel right and it made my a bit Crazy - this is what happened:
Doctor comes in and greets me and opens my chart on one computer, then opens her laptop and says. Oh, I forgot to tell you, I have someone dictating what I say on this computer and she can actually see and hear us. I couldn't tell the doctor anything private, because she had someone watching and dictating. Her examination consisted of listening to my heart and lungs through my clothes. Said everything is fine and I will see you in 6 months. Does anyone else see something wrong with this picture? Am I just touchy or have we lost our private, personal conversations with our doctors?
Sep 12, 2017 03:24PM Lucy55 wrote:
Octo ..in your pocket ..!
Gma..yes !!! I think that's VERY weird ..I think I would be changing doctors !!!!!
I have bad insomnia lately ..too much going on ..my brain can't rest ! Only 5.20 am here , and I was still awake at 12.30 last night !
Off to my daughter's today ..it is Grandparents Day at my grand-kids school ..it's going to take 90 minutes to drive there ....due to the time of the day and the traffic ..!!
Sep 12, 2017 03:38PM GmaFoley wrote:
Oh Octo - surprise - I'm in your pocket - I brought chocolate!
Sep 12, 2017 06:24PM proudtospin wrote:
well my primary care doc checkup was today, went well, gee bp was even normal for me. She spoke to my onc, thinks my onc is good, beats me but her approval means lots to me
So tomorrow is pet scan
Sep 12, 2017 08:35PM octogirl wrote:
In your pocket for the scan Iris!
Thanks for being in my pocket for the tests today....and Gma: the chocolate was much appreciated since I had to go without any caffeine for 24 hours prior to the test!
Actually, the dreaded treadmill was the easiest part. As I guessed would be the case, I handled it fine and it wasn't hard at all...HOWEVER, the rest of the afternoon was hell. First they did an ultrasound: not pleasant but ok, but what no one told me until I got into the room, was that the treadmill test would be proceeded and followed by a cardiolite test: basically 12 minutes each time of photo-taking with a camera that looked like a cross between a MRI machine and the radiation machine many of us know all too well. They shot me full of some sort of radioactive material and protein for the tests. I could handle that, sort of, but the photo taking freaked me out a bit. I threw a bit of an anxiety fit that this hadn't been explained when I was told I was having a treadmill test (the nice tech agreed that it should have been and was very apologetic)...anyway, I realized while on the treadmill trying to decide why it was so hard, that part of it is the damned PTSD. It really was like being in the radiation machine again: having to be in a certain not real comfortable position and to hold still....and for twelve minutes each time!. So, I did better on the second round, but it still was rather unpleasant.
I wasn't allowed to eat for four hours prior, and between that and the no caffeine for a day, I was starving and had a huge headache and was still a bit anxious by the time I was done at 2:30 pm. Oh well, the solution to that was easy: went straight to a nearby Mexican restaurant I really like, and had a large ice tea, followed by a margarita, followed by a combo plate. That covered the bases and felt like petty revenge against my heart doc for putting me through that crap! (though I guess it was really my heart that I wasn't helping with the three major food groups of caffeine, alcohol and tacos :-)) I am sure the staff are still puzzling over the woman who could barely walk but did fine on the treadmill, but freaked out on the painless cardiolite machine.....
Did a bit of googling on the test after I got home: apparently women are more likely to have 'benign' abnormalities on the regular EKG (as I had, hence these additional tests)...Still wish it had been better explained. The tech did make me feel better, however, as he told me that while he couldn't give me the tests results, that the cardiologist would interpret them and follow up, that in all likelihood if there was a serious problem I'd have had symptoms and would know there was a problem already. I sort of felt that was his way of signalling that all was well, though maybe I was over analyzing.....
Oh well, onward and upward. Have a MO visit later in the week. It's always something...
Sep 12, 2017 09:53PM ChiSandy wrote:
Octo, glad you came through your cardiac tests okay—PTSD notwithstanding. The Cardiolite was the pits for me, too. Since it was done in the morning, they told me to be NPO after midnight. So of course, I walked in there dehydrated. They had to call in the surgical phlebotomy team to find a usable vein for the IV isotope infusion (back then my R arm wasn’t off-limits as I hadn’t had bc yet), and it took 2 cans of diet 7-Up (which they grudgingly allowed), the Accu-Vein lamp and 15 min. of a heating pad on my arm to get an IV started. But then the cold steel table felt narrow as a railroad tie and hard as a rock as I lay down and it slid me beneath the camera. (Why are those tables so damn hard? Can’t they pad them or at least let us put a blanket beneath us)? The worst part was it was brutal on my lower back.
Have another margarita or two before you go see the MO. I have my chem panel and Prolia shot early Thurs. morning (so going NPO after midnight to get a true glucose/a1c value won’t be such a hardship).
Went back on Dexilant—and now twice-daily iron (Feosol before bkfst., ferrous gluconate & 1000 mg. of C at least 3 hrs. after). No visible signs of absorption yet, but I’ll give it a few days. My GI doc explained how long it takes food to uh, reach its final form en route to the loo; so if it still looks normal by Thurs. I’ll have to start tapering off the Dexilant. (One week of 2 days on, 1 off and we’ll take it from there). I did have an especially rigorous training session last night, so maybe that’ll get things moving. The toughest things for me are the “battle ropes” (60 sec. at a time), deep lunges, raising my arms perfectly vertical overhead while holding weights (heck, I have trouble doing that empty-handed) and balancing on one leg while kicking the other w/o touching it down. One-legged calf raises are rough on my R leg due to all the hardware in my tibia—I’m so afraid it’ll loosen.
Sep 13, 2017 09:28AM proudtospin wrote:
well my pet scan is 11 am so this is day 2 of no coffee. Yee gads but i will definitely need to hit dunkin when this is over, missing the monthly aqua luncheon
Thinking this is harder since i am retired, it interfers with all my play time!
Sep 13, 2017 12:38PM Lucy55 wrote:
2.25 am here ..so sick of this continual insomnia 🙁 It's double trouble because when I don't get my sleep my anxieties go through the roof and I turn into the Crazy Lady from Crazy Town
Octo ..glad your tests are over !!! ..and I would say that the tech was definitely giving you the nod that everything was fine ...bless him !!!! I don't blame you feeling freaked when you had additional tests they didn't even tell you about !!!
Iris ..in your pocket for the scan ..and also for the drink afterwards !!!
Hugs to all x
Sep 13, 2017 02:19PM proudtospin wrote:
yummmmm on the ice coffee, scan over, really not bad, just might have a second coffee as i went 2 days with no caffeine
Sep 13, 2017 09:32PM Tomboy wrote:
Tests tests tests, procedures procedures procedures. Drugs, and different drugs. Pokes and machinery, weirdo no touch doc visits (!!!), try this, do that....
What the heck happened to all of us?!?
Hugs for all the good crazy ladies!
Sep 13, 2017 11:56PM Di2012 wrote:
Octo, I KNOW the anxiety of having a Surgery cancelled by a funky EKG....almost five years ago....My BMX was cancelled...I fasted and I was already admitted to the hospital, in my private cubicle with my surgery gown on, waiting for my surgeon, and met the anesthesiologist (a BC survivor) and WHEN MY SURGEON arrived she came in saying I had an irregular EKG and said I had to have a stress test before she could proceed...after redressing I went crying out of the OR prep area......4 days later I had my surgery.
So glad all went well with your stress test!
Molly...thinking of you and Wyatt...HUGS! Belated happy anniversary wishes to you and hubby!
Iris.....how many treatments! will you get any breaks? HUGS!
Hi to you, LUCY ...how is your dear GS?......congrats on selling your house........I have been having insomnia too...taking An OTC drug call zzzzquil.....doesn't always work......sooo anyway I had a couple bottles of CHAMPAGNE...... Gift from cruise ship Captains.....and decided to "CLEAN" the kitchen cabinet, drank the first bottle in 2 evenings, and I will be finishing the larger second bottle (3 night bottle) tonight before bed...ZZZZZZZZ😕
ChiSandy.....hoping your labs no longer show anemia......and your tummy and esophagus are on the mend.
I see my hematologist/oncologist on Friday..... Always anemic😢
GMA......MY primary care doctor NOW is a U.W. 3rd year RESIDENT MD . He introduced himself, and told me another supervising doctor would be monitoring him and then he went and got him, and so the both had tablets and were entering info......the only physical contact was a handshake, heart and lung through my shirt. The NURSE TOOK OTHER VITALS before he entered the room. After spending almost an hour with me. Both doctors left and reported to the Head doctor about me....so they didn't miss anything..,.I felt better that they were NOT on a patient every10-15 minute schedule.
Tomboy....HUGS to you! Does one ever get over the stuff/CRAP both you and I went through concerning our mothers?
HUGS TO ALL!
And a bubbly toast to you all!