CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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PMR- I didn't have recon, but all of the women in my chemo group who got expanders complained about discomfort. I hope yours ease with time. I think after exchange it does get better. You might check out the recon threads. Maybe you already have. Anyway, pain does make you crazy and I hope we can distract you here.
Robin - it's ok to peer through the curtains. But I'm glad you came out to say hey. And I'm glad you have your comfort bear too. It is very frustrating I think, to all of us, that we all see or at least saw ourselves as strong, independent women, and between dx and tx we are reduced to fearful, tearful, shivering beings. I am just one year out from dx and still fighting with myself over the above newly acquired traits. I have read and relied on sisters going before me that it gets better, we normalize (I hate that expression, new normal, but there it is) over time. It's just that we all do if at different rates of recovery so to speak. And that doesn't begin to cover the ancillary problems that life brings during this time, including changes in relationships. They are sad realizations indeed that people you'd hoped would understand and support you the way you need, cannot or do not.
So here we are. In Crazytown. And you are very welcome here, peering from behind the curtains, or when you feel like it, pull up a comfy chair next to the fire with a nice soft throw, and we can talk. Or not talk. That's how it is.
🎪🎪🎪🎪🎪
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Decision Freak it's ok. Yeah I have started working out by slow gentle walks. Then this weekend my BC friend and I will trade massages at her office. We are both massage therapists. She is a fitness nut like I used to be and somehow this is her third reccurance with BC. It is in her hips etc now. Stage 4. When she told me I just wanted to cry but I was too afraid to scare her. Then I just blacked out the information until I got home. Then just cried and cried for her.. We went to the Buddhist Stuppah together and listened to a monk on the topic. "Why me?". The monk said it's karma ripening from many many past lives. That helped eliminate the terrible quandry of sleepness nights wondering what I did to deserve this.
I read all the posts here and want to reply to everyone but by the time I get to the reply box I forget the names of the ladies that made commentary to me. But I will reply.
It all boils down to be afraid to live again. I did a therapy session on that topic and wept like a baby. I am afraid to live again because what if I get it again and it is Stage 4 like my dear friend? Truth is I am alive today and I am living so I must try.
The good looks genes I think is being the combo of enrolled Native American and White. It is a cool combo. My mom says the same thing. How did I get such a beautiful daughter and grandkids? She is the Native American and really a beautiful woman inside and out. The beautiful black hair and dark skin.
Here is a funny one. Somehow I ended up having a period for three weeks last month. That has never happened to me. So I was convinced I was bleeding from my behind. I was so concerned I had bowel and intestinal cancer. Because it was a small amount of bright red blood (but I could not see it in my stool) so I then became convinced it was anal cancer. Like just cancer on my anal opening.LMAO!!!!!! I sat on the toilet with tissue paper until I could see exactly where it was coming from with absolute terror for a good half hour. LMAO! CRAZY!!!!! I think it's because after my unimastectomy surgery the gal in the room next to me at the hospital was uncontrollaby projectile vomiting all night long. The next morning I heard the PHD tell her husband and son she needed to go into Palliative Care. This is what NED Cancer feels like to me.
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Katy, you are so wise and you express for all of us so beautifully.
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I did get an official welcome many, many, pages back. It took some time to catch up, haven't really been on since Christmas. I can totally relate to that picture. Two years out and still trying to figure it all out.
My RO has now suggested therapy twice. (6 months ago and the other day) I guess I am just not ready to go. I have been in the distant past and it was extremely helpful. I do not know what is holding me back. That is what brought on the tears. I have been trying to slowly wean off the Effexor and have awful side effects as I am doing so. (Extreme dizziness and nausea) I even experience that if I am at least an hour overdue for a dose. I hate that. Truly hate it.
These issues are minor compared to everything else I have gone through during my journey.
Thank you for the wonderful hospitality and accommodations! Think I'll stay for awhile!
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Robin: please do stay!
Porch, sun over here and shade over there, with rocking chairs appropriately spaced. Cooling soothing drinks. Some with ginger, some with fizz. Comfort food, sophisticated food, often gluten-free, and sometimes things we may not tell our oncologists about. (hey, it's virtual.) But always a (I hope! we'd better!) calming sympathetic atmosphere.
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Bcky, did you talk to your doc about the weird three week period? Tamoxifen can do some odd things to your uterus, they might want to check it out.
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Hi, crazies, I am dealing with a big pile of family stuff. Soon we will have another thread. Based on suggestions from my most wise advisors, it will be Great Entertainment for BC Treatment and Beyond: Members' Picks. The thread will focus on movies and television.
This is a comprehensive concept that I think will allow participation by anyone that enjoys movie and television entertainment.
Tomboy has been a major driver behind this new thread with Katy providing ideas and support.
It has been a long day with little sleep for two nights in a row. If I failed to mention someone who supported the Great Entertainment thread idea please let me know!
Speaking of treatment, I got a call from the plastic surgeon's office at the comprehensive cancer care center where I am receiving treatment. I have to see the plastic surgeon before surgery to make sure I am a good candidate for breast reduction. Smoking gets you thrown off the PS train immediately. The oncology nurse does not think I will be turned down for PS. I am hoping that I don't have to make an extra trip back and forth to the treatment center as it is 250 miles each way.
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Cubbie2015. Yes I talked to my Oncologist about the three week period. I am 47 and she thinks I am heading into menopause. I had an OBGYN appt last month and she biopsied my cervix and uterus. So I am ok. All was well. I know Tamoxifen drastically increases our chances for Uterine Cancer but neither PHD is or seems worried.
Decision Freak. Breast Reconstruction has been really worth it for me. I hated the prosthesis. I hated only having one DD boob. I had a lift and reduction on the healthy boob and an implant in the left cancer boob. I get a nipple the 11th. So So worth it but a huge adjustment.
RobinLK Hi! Glad you are here. That picture speaks volumes to me too.
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Hi RobinLK! Long time no see!
We guessed about Robin over at the triple positive, when she had no hair, she looked about 12! Same great smile.
I also was struck by that picture, what it signifies.. Thanks for bringing it here,Bcky. No wonder your family is so handsome, that's a great mixture. Your face seems somehow so familiar to me...
D'F, I think your new category is going to be amazing! AND important!!
BBL
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Love your porch, Queenmomcat. Only...can we have ginger drinks that are fizzy? I'll be on one of the rocking chairs with my laptop, but if you like I'll stir my stumps later on and cook dinner for everyone. It won't be as fancy as Sula's, but it should be reasonably edible. Made beef stock yesterday from bones I had in the freezer, thinking maybe mushroom barley soup. And cornbread.
Waving hello, crazies, and hi and welcome to all the newbies.
Still healing from rads, but I can see a time in the near future when I won't be slathering on the burn cream. And....holy cow: it's 8:20, I've been up nearly three hours, and no ibuprofen yet today!
And I've been working, steadily and with purpose, all week, which is so very nice after my unplanned radiation vacation (codeine/Norco don't mix well with higher level thought).
I hope everyone has a lovely, pain-free, and--to the extent possible--anxiety-free day!
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Rainny: fizzy ginger drinks a must on the CrazyTown Calm Porch. Cold, hot. Your choice.
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some hot ginger tea sounds lovely right about now! The long promised El Nino has finally hit California and it is rain, rain, rain..bit of a break, more rain, rain, rain. Mind you, NO ONE who has lived here during the drought is complaining!
My son and his GF were here and just went back to the East Coast...and made it home this morning after a redeye with no significant delays, thanks probably to timing their flight between the storms. On their last night here they cooked for hubby and me, which was nice!
Work is picking up, and my boss has called a mysterious 'all hands' meeting, to 'let us know about some stuff that will be happening soon' , in the words of his assistant. Meeting won't be till next week so I am going to have to try and get him to spill the beans to me before then, as I don't need the extra anxiety of not knowing (maybe I will play the C card?...). My fear is that he will be announcing either his retirement (most likely) or that he has taken a position elsewhere (not as likely). He has been my boss since I took my current position 8 years ago, and I am not sure I am ready to adjust to someone else after the pleasure of working for/with him (basically he gives me a lot of free reign to be creative and work things out on my own). I am starting to think my own retirement may not be too far off....That would be a bit bittersweet but mostly great. First item planned post retirement would be a road trip to visit all the crazies (i've wanted to drive across country and back ever since I can remember) though I would do some PT consulting work too....
But really, I thought that was three or four years away. Really nervous about this meeting.
On a more immediate and positive note: tomorrow is my last day of rads!!! Party weekend at the Octohouse while we sit and look at the rain! (and maybe watch a few of those movies from DF's new thread-to-be...)
Thinking of all of you and sending hugs.
Octogirl
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Octo: Hurrah for finishing rads! Hiss for the stress of wondering why your boss has called this meeting. (On a side note, Celestial Seasoning's "Lemon Ginger" (not Zinger) tea is one of my favorites.)
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Queenmomcat--I work just down the street from Celestial Seasonings!
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Rwiley: Lucky you! (really!) Do they have a retail outlet there?
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I love the lemon-ginger combo. Twinings has one, too. And sometimes we'll get interesting variants in Chinatown. There is a honey-lemon-ginger kind they sell there that's wonderful for sore throats.
Ginger tea, ginger ale, ginger beer...I love it all and always have!
Octo, congratulations on finishing rads!! I'm sorry your boss called this meeting (and sorrier you have to wait so long for it).
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Only drink flavored teas........love most of them......Rasberry Hisbiscu is great............never drink plain tea.........sometimes just too bitter..........I like weak tea......my mother use to say.........why do you bother..........you should just wave the tea bag over the water and pretnd you used it......LOL..........I could make 3 cups of tea out of one bag of plain tea.......hahahahaha
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Queenmomcat--it's the actual factory. You can go on a tour, they various teas available for tasting, and they also have quite a nice shop. Oh, and you can even get lunch at the employee cafeteria if you want.
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(squeaks excitedly) Wouldn't mind visiting THAT sometime! Someone reviewing the peppermint tea online said that CS has to keep the mints separate from the other ingredients in the factory, as their aroma is SO pervasive. Their reaction to the storage area was "How is this stuff even still legal?"
A link (I hope) to the page on Amazon with that review of the peppermint tea
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I grow mint in my garden. It can be very strong. It is a pretty herb that usually lives through the winter. There are so many exotic varieties of mint!
I avoid packaged herbal teas, though. Even the popular ones can have trace contaminants that send me into a vicious flare. I gave up the herbal teas long ago though I don't mind sniffing a teabag, lol.
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ducky, me to on the week tea, I reuse the bags all the time
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Yes, the peppermint room is the highlight of every CS tour! If you have any kind of nasal congestion going in to the peppermint room, you won't have it when you leave!
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Here is the new entertainment thread: Chilling Out: Members' Picks for Movies and Television. Please join us and help us open a bottle of the fizzy stuff, in our own crazy minds anyway, and raise a toast to Great Entertainment.
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Checking back into Crazy Town. Sorry about the delay in posting pix of the Spain portion of the cruise, but that bronchitis really knocked me for a loop. PCP was on vacay, so his covering MD prescribed Medrol dosepak and doxycycline. Lungs finally normal now. New Year's Eve night I started letrozole (Roxane generic--the Femara is just now being shipped from the UK, via regular UK and Canada Post). Mon. night I finally started getting some mild SEs: night sweat, soreness in back & hip (not much). Roxane has the shortest list of inactive ingredients of any of the generics--not even any dyes, and the pill is really tiny. Jan. 1 I went on Medicare (BCBS, plus Humana Enhanced for Part D, so I can't refill any of my scrips at OptumRx and will have to get new ones--Humana doesn't list them as an approved pharmacy). Took a look at the one my shrink wrote for Wellbutrin, and he checked “do not substitute." (He feels some of the generics can cause convulsions). Natch, only the generic is in Humana's formulary--so I'll have to get him to write a new one, either allowing generic (Mylan has been okay for me) or for 90 at a time, so I can get it from CanadaDrugs (not cheap, but still quite affordable--I've had to pay a lot more for certain drugs, such as Protonix, in the past).
Had my LE doc appt. on Tues.--good news is that sometimes a seroma is just a seroma, as is the case with my swollen boob. I have to be a patient patient and wait a year or so for it to resorb and reveal its true shape (and then I may get reduction and/or oncoplasty for symmetry--though Medicare might not pay for it). He said there's a slight diff. in circumference between R and L arms and didn't see any cording--the diff is w/in the ballpark for dominant vs non-dominant hand--but was concerned when I told him about the finger swelling I had on the flights (despite wearing compression), the stiffness I felt in the mountains of Sicily, and the tightness, soreness and forearm knot I'd had before and during the cruise. Because of that, he is diagnosing borderline stage 0 LE, and I will have to do PT for exercises and MLD massage (including how to do it myself). He said I shouldn't have used the sleeve & gauntlet, and he prefers gloves because gauntlets can cause finger swelling and dual compression at the wrist, so he prescribed a glove--with the caveat that is should be comfy, not tight. He also said that I should have ignored my bs' nurse and continued to do wall-walking exercises post-op, which I stopped when she warned me they'd cause cording. He says he never prescribes compression for patients who've had only 4 nodes removed, especially if they're negative and thus don't get radiated. At least he says I'm doing the right thing by sleeping in a bra, and that underwires are okay as long as they're comfortable--support is the key in helping the seroma resorb over time.
Then yesterday while I was getting my pedi, I felt a sharp burning sensation on the skin of my abdomen, as if the elastic on my panties or pants was giving me a blister. Went to the bathroom to look--nothing there. Lasted all last night into this morning. Dr. Google (and my husband) both said that's how shingles can start to manifest--the rash can take 2 or 3 days to show up. Great, just great. I had the shot, but 30% of patients get shingles anyway, just milder. The radiation or (more likely) the Medrol may have screwed up my immune system. I'm not feeling it now--having a couple of huge poops seemed to make it go away, so maybe it was just referred pain from a distended colon. (Here I am talking about my bowels--my mom used to do so all the time, and my sister and I made a pact that if either of us started to do that, the other one has permission to shoot us. So don't tell my sister). But at the first sign of a rash I need to go to my primary (or CVS' Care Clinic) and get a scrip for and immediately start taking an antiviral.
Was all set to take my voice lesson via Skype, but teacher had to cancel because of ISP issues. In about 90 min., I have to head to O'Hare to pick up my friend from New Orleans, who'll be staying with me till Mon. morning (she has gigs Sat. night & Sun. aft.). We'll probably have to stop at the shoe store to get her some boots (she doesn't own any and I don't have any in her size to lend her) because by Sat. night we're going to get snow, at least 2" by the time it stops Sun. and the temps plummet into single digits (I can lend her hats, scarves, gloves and a warm coat).
So Monday we'll resume our online cruise--this time in Palma de Mallorca, Spain.
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Octo.. I hate waiting to find out "anything ".. So I can understand exactly how your feeling.!! I'd be in there picking ypur boss's brains for info about what's going on too.!! Hopefully it'll just be one of those "we must start the new year as a team, and pull together " talks.!!!
Rainny.. Glad you can see the end to the Rads drama is in sight now.!!
Ducky.. I hate the flavoured teas.. I've tried to like them, but can't !
DF. I'm.sure there will be lots of interest in your new thread.!
Slow.. Thinking of you.. Sending love and hugs. Xx
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Chi.. Glad you are feeling better..and hope you're not in for the shingles.!!! I know about the bowels conversation.. I worked in aged care for donkey's years... and over breakfast most mornings , in the dining room, their main conversation to each would be whether or not their bowels had "moved " yet "😱
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OMG, the bowels discussion. Fiber and water. Fiber and water. Not going to get into TMI..
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GREAT................................
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ducky, if anyone knew what we go through in this household. I would surely get an award. Oops, we don't ensure good bowel health for our loved ones to get awards, do we?
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LOL
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