Sisterhood of the Secret Handshake
For the friends I have made on BC.org, facing our challenges with our own particular twisted sense of humor...
This thread has moved to ShakeM on Yahoogroups
you can log on Yahoogroups on the link above or email shakem-subscribe@yahoogroups.com to continue the discussion, perversity, poop talk, ranting, raving, recipe-sharing and all that jazz.
Hope to see you there!
Comments
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I'm here with ya, Rach!!! Sisters of the secret handshake unite and fight!
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Hey Rachel. Thanks for the invite. I look forward to getting to know all of you better. I will begin taking tamox in December so I don't have much to offer on that subject yet, but I can talk chemo, mastectomy, reconstruction, etc. with the best of them.
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Rachel_BC:
I'm all for twisted...sister!
Speaking of twisted...here's my weekly hair pic update. I look like a tumbleweed...But at least I have weeds... (Yeah, wrong (?) thread I know...and clearly too much time on my hands...)
Had my bloodwork done at my visit with the onc last Friday - they're really happy. I'm not even anemic any more! Wish they could confirm all the 'cancer uglies' are gone...would be nice to have a simple blood test for that. My onc wants an MRI, but I have a TE in place. Metal port means no MRI. She's not happy the PS wants me to wait until May for the recon. I'm so red from the rads though, I can't imagine doing it too soon...much as it would be nice to lose my little soccer ball...So the onc, the BS, and the PS are going back and forth over my exchange date and/or what tests can be done now. At this point I'm like "just let me know guys"...
I'm one of the lucky ones...no candy left...and my son didn't bring home much this year because he went to hang out with a friend. Hope everyone had a Happy Halloween!
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chelev:
Do you do the Boston boat show?
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Yeah baby!!! and how am I going to keep my paws off the cookies? When ya coming back to the big city?
I feel like I just passed the initiation... pretty sure I have started getting hot flashes and ya know what? They're OK! Well, its only been a couple days and boy am I happy its when its cold outside!
I took xanax to deal with the HF that was irritating me, but I am thinking about that Effexor...
Meanwhile, got a pimple on the bad boob where I can't see it... and not sure its a pimple so gonna drop by the boob doc tomorrow... creepy.
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capra- wasn't that your recipe for chick pea soup? I still gotta try that
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We have about half the candy left, or at least we did until DD raided it yesterday afternoon to take a supply back to school with her. We don't really get any trick or treaters before dark in this neighborhood, and since it started raining lightly here at about 7PM on Halloween, it was a very short period of doorbell ringing, with a higher percentage of older "kids" than usual.
Most of what was left found its way up to DH's not so secret stash so he can have some chocolate every night when he comes home from work and changes into more comfy clothes.
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Little Red I LOVE the hair progress pics! Been working with chelev and some of the Hair girls on chemo hair with my colorist. I also saved this link from a BC org gal who posted her progress, I think she was a photojournalist too- I shoulda saved her name too- maybe someone here knows her?
My saying - especially for the non-SFBC people is that the two things that suck most about cancer is that you don't know when you have it and you don't know when it's gone. Before DX and the avalanche of information, I thought there was some way to determine we're "cancer free" and of course friends and family want to hear that... I had a PET/CT scan and was all happy about no cancer showing up until they told me the cancer would have to be 1cm or larger to see it on a PET/CT scan.
HURRAH for not being anemic!!!! Was that a chemo thing or pre-SFBC? I'm popping Iron since just a year before SFBC.
Well that has to make you pretty twisted, when your ONC and your PS want different things for you. Was that a follow up MRI? You had one before surgery too?
I think Patty B part deux had similar (I could be wrong) getting her exchange and fills after RADs... hope she'll pop in with some better advice than I have.
I should go work on my Halloween pics... man, I spent all this time and $$$ on our costumes and ended up not using any of it and eating all the candy myself!!!!!!
Meanwhile I am humming Pomp and Circumstance to myself for my hot flashes.
And thanking my body....
oh and yesterday I was TIRED like crazy. After bringing the kid home from class, I was like barely moving, so tired... and he was tired too. So we both took a nap from like 2pm on... at 5pm the people downstairs decided to do some drilling and woke both of us up out of deep deep sleep. We both went back to sleep but after it happened three times I woke up- and the kid stayed asleep until this morning at 630am! (Its his usual wake up time before DST). I would have said it was the Tamoxifen or my period ... but that doesn't explain the kid sleeping like that too!
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Rachael, kids (and pets) seem to sense our moods, and use our demeanor as cues for how they should feel and act. You've been stressing about whether or not the Tamoxifen is working, the cookies, the pre-school and Halloween. Since so much of that is now resolved, you can relax, and so can your son.
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I'm on board, just need to be clued into the secret handshake
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Rachel, send kmmd a photo of the "handshake!"
I am a little stressed - going to my onc tomorrow - I pushed a regular follow up appoint up a few weeks because I've been getting nipple discharge that was uncomfortable to remove and now has turned into a throbbing, constant, searing pain. Can't even accidentally brush past it now without hurting. Am thinking it's a clogged duct or an infection (I am hoping that's all it is!), but will find out tomorrow. making me NUTS. ahhh, good pinot noir really helps with the anxiety.
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yep, I posted the chick pea soup recipe. It's deeelish!
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Little Red - we have a corporate setup at the show, but I usually don't get up there for that one. Am trying for the NY show - didn't make it last year due to budget concerns, but maybe this year will be better.
Where is the soup receipe posted?
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Rachel_BC:
You're going to laugh at me - I have Karin Stack's photojournal pic (above) printed out and posted on my bedroom mirror. I'm having a race with her. Each pic represents a week of growth, so I mapped out each pic with a corresponding date since I was 4 weeks out of chemo. I compare notes each week. Silly I know. But I REALLY needed a goal. So far I think I'm keeping pace - but I'd like to pull it out in a turn and beat her by a mile. Not likely, but I don't feel so discouraged when I see her progress and mine.
I was borderline anemic all the time since my pregnancy (he's 13 now). I was anemic all through my pregnancy and was taking tons of iron. Didn't change much, didn't even bind me up - it was like water and just went through me. This is the first time in so many years I have had a rading that wasn't anemic or borderline. Can't remember when I was last allowed to give blood. (Not doing that now, I guess.)
I found my lump, went in and they couldn't see anything on the mamo. But they knew it was there and I told them it had definately changed - it wasn't a cycst! They did an ultrasound -and oh yes, gee, that doesn't look good...hmmm. Did an MRI, next day an ultrasound guided biopsy. SO...the story goes. Anyway. I have very dense breasts. Mamos suck for me, so my onc wants a followup MRI. I think I've had all my fills, but the exchange has to wait for my skin to heal. I don't want to have a failure on the LAT flap! Arrgh!
I have to say I'm glad for the HFs too, but I'm tired of changing in the middle of the night. Today I'm doing laundray again - the whole bed too. I forgot to sleep on a towel...my bad.
My friend, who's a nurse, gives her excess candy to a drug treatment center. The folks in recovery are usually psyched to get the sweets. I think that's a great idea. They're struggling, and it puts a smile on their faces for the day...
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Ah the secret handshake pics... should I post 'em or PM them? OK PM for now...
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Chelev, sorry to hear that, waiting for tests is the pits. Can you stock up on a few bottles?
If you need to PM them, can't wait to see them
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cpara's Chick Pea Soup recipe:
Chick Pea Soup
2 carrots, sliced
2 stalks celery, sliced
1/2 cup sliced mushrooms (or more if you like -- I use more)
3 green onions, chopped (white part only)
4 cups veggie or chicken broth (low sodium)
1 tsp dried thyme
2 cans Chick Peas (drained)
Put broth, carrots, celery, mushrooms and green oniond in dutch oven. Bring to boil and then let simmer for approx. 15 mins. Add chick peas, thyme and salt and pepper to taste. Let simmer for another 10 minutes. When all veggies are tender, put in blender (small amounts at a time) and blend well. Soup should be chunky.FYI -- add more chick peas (1 to 2 cans) to thicken and this as a great dip for raw veggies!
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chelev- that stinks! Of course good you will get seen tomorrow. All I can suggest is Chianti
And please let us know wtf happens tomorrow? Little Red- THANK YOU for the explanation of the pics I posted, it was stupid of me not to take all the info. Each one is a week, OK got that. Yeah, I am sorry I didn't donate blood more pre-SFBC... or maybe I did someone a favor by not donating? I know I can't donate bone marrow.
OK I am completely stupid on the process with TEs and fills and exchanges, I thought they did TE to make the exchange possible, like exchanging a big prothesis for the space from the expander, then they filled the prosthesis. Right, so I am completely stupid there. The reason for no MRI is because the TE is metal, right? And more stupidity on my part... you had both boobs removed, yes? Bad boob and good boob, yes? So the MRI is for chest wall? ( You don't have to answer my stupid questions). I think its good your ONC wants to MRI again, and I get why they'd be PO'd they have to wait. Good that a) YOU STOOD UP FOR YOURSELF and said HEY this aint no frikin cyst y'all and b) it was findable by sonogram. I also think there's much wisdom in waiting until may to let your radiated skin do what it's got to do to accommodate the foob (foob, yes?).
Last night (or somewhere this morning) I think I was woken up by a HF. I was so tired I just tried some deep breathing and lifted the covers to cool off. I read somewhere (maybe I have a link somewhere) about deep breathing helping with hot flashes. So far - I ain't sweatin... which is a big-o surprise because all my life all I had to do was look at a silk shirt and I'd sweat, I sweat all the time. But I have been waking up hot in the middle of the night because of the funky heat in my temporary apartment for years.
If these are my HF, and I really hope so, it kinda also feels like the "burn" I get when I am working out properly or have a fever, so I like to think this HF burn is burning whatever remained of my cancer out of my blood like a fever burns out infection or workout burns fat.
I am real big on visualizations and used to visualize Tamoxifen as little guys in white lab coats putting condoms on the hormone receptors of cancer cells...
You give me a good idea for next Halloween, bringing costumes and candy to the children's wards at hospitals... gotta work on that...
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GREAT idea Rachel!
I love your visualization for Tamoxifen! I consider anything that starts the blankets on/off game at hot flash. Mine seem to be quieting down a bit. I hope that is OK...
I did have a bunch in the MRI tube on Saturday, so apparently when I get nervous they appear, and yes they wanted to make sure I had my IMPLANTS and not TEs in, ouch could you imagine....ahhh, don't think about it.
Have a great day everyone--and thanks for a great threat Rachel!.
Karen
PS, my oldest is 21 today--21 years ago I was trying to figure out how to breast feed...my how things have changed. I still can't figure out how he is 21 when I'm still 28...hmmm.
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Gotta love the visual, Rachel. Little guys in lab coats with tiny little condoms...
Don't apologize. I'm sorry I ever got to know what I know now with regard to recon. I had a unilateral mx. My left side was removed. While that was being done my PS did a small augment on the right for visual and movement symmetry. During the surgery the preliminary biopsy said node involvement so the tissue expander went in on the left and I was closed up. No LAT flap with imp on the left for now. The PS held off because they knew I would do radiation if I had node involvement. Radiation meant the skin would take a beating and therefore need to heal up before being messed with. I need the TE to stretch the skin and the LAT flap to provide additional skin for covering the final implant and making a nipple. MRI is for chest wall and right good boob, since my mammos don't seem to show anything....!!! Bad boob's gone bye-bye...Since the surgery I think I've had all the fills I will need.
Here's hoping you get only the heat and it stays a 'dry heat'...
chelev:
Sorry you won't be in Boston. I like going to the boat show.
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geez Louise, I'm almost a whole page behind already! thanks for the invite, Rachel.
Afraid I can't be of much help to Little Red about her dilemma. Yep, I do have the TEs along with a "fill port" that must be part metal (?). But I didn't have rads (or chemo, for that matter). I didn't realize you couldn't have an MRI with the port in place but that's something I going to ask my PS this week, as I'll be due for a 6-month breast checkup of some kind soon and the breast surgeon initially talked about MRIs for that. LittleRed, I would say don't risk negating your reconstruction because there is SO MUCH stretching going on, your skin needs to be in pretty good shape. (However, for you it may not require quite as much stretching as mine since you're also getting a flap, which'll help some). But I can also see how the docs want to keep an eye out via the scans -- so guess they're going to have to duke it out.
And I wonder now, my cardiologist has scheduled a regular heart checkup for me today and instead of an EKG (which I anticipated), he's ordered an echocardiogram (Ultrasound). Wonder if that had something to do with the TEs/port?
chelev, sorry to hear about your funky boob. Hope it turns out to be something simple!
The Tamox visualization!! cracking me up. So the little hormone receptors are males....?? THAT FIGURES!! naughty little dudes running around indiscriminately......
My hot flashes feel like I have stepped into a sauna wearing my winter coat, hat, and gloves. My skin actually flushes and I perspire somewhat (I usually don't that much), but it's usually under my breasts (well, now just under the natural one on left, not the foob, for some reason, maybe it's too perky to accumulate anything underneath it). My first reaction is to remove my clothes!! Then about 5 minutes later, I'm freezing....
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Hi girls! I'm on board here too!!
LittleRed, my hair looked just as your pic last December, now its really getting cute and the girls are just semi in the back. I totally have the feathered hairdo! It all grows at the same length...people are commenting how cute it is...maybe I'll start that trend back!!! LOL
Our kitchen here at work is FULL of candy and cookies!!!!!!!!!!!!!!!!!!! I pawed through the good stuff, heehee....
Ended up yesterday going to my older DD's house, they were painting her bedroom/bath and I helped and of course played with the pups and took them for a walk. We laughed and had a great time, she is taking me to lunch at Boudin today to thank me! YUMMO!!!
Hope the other NoCal girls join this thread....Lisa-e, Allie, Leggy!!!!!!!!!!!!! are you there???????
And of course I love all of you on here already!!!!!!!!! You know I do!!
I have the same hot and then freezing problem, but it is so inconsistent. In bed, I get warm after I think about it or I return from going to the bathroom, then its covers off, wait to freeze, then on....
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I love, love, love the hair progress poster! I finished chemo the first of May and I would say I am about to row 6 on the poster -- it's taking a little time, but the hair is growing back and that's all that matters!
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I am here, but am busy working. I am reading the thread in bits and pieces, between other tasks.
I like the hair poster too. I never had chemo, but like to keep my hair short. Currently the length corresponds to row 5 or 6 on the poster.
Kari, I am jealous that you had left over Halloween candy at your office this morning. Not only did the kids clean us out of all candy on Saturday night, but there wasn't any in the copy room this morning.
See all of you No Cal Women on the 8th!!! I am so looking forward tomeeting you guys.
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I can take the heat, its the drenching sweats, I think I'm the one who needs the "raincoat." I agree with the hot/freezing thing too, leave you feeling cold to the bone.
kew: mine is 26 today. I'm with you, can't figure out how that happened since I'm still 28. Well, except for the big hair, chemo took care of that.
I finished chemo in March, I'm the beginning of row 6. My hairdresser is a bit surprised how slow it is growing because it used to grow so fast. I'm trying to come up with a good threat for the next person who tells me "it is growing so fast and curly don't you love it" maybe I'll give them my hotflashes for a week. I know most the time it gives them something to focus on and they're really saying they care and don't know what else to say, but it does get old.
My pet peeve of the week: people who don't STAY HOME when theyr'e sick, and now I have it. I spent all morning rearranging my scheduled so I can quarantine myself like I wish a few coworkers had done. And some of you know the hours I work, it wasn't easy, but heck, germs belong in the privacy of your own home
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Hey Rachel I was just watching the news here and they had on a story about an American navel ship which was constructed using steel made by recycling the debris from the Twin Towers site. They showed it sailing past the site and it gave a 21 gun salute - when they showed the spectators I said to DH 'see if you can see a blond lady with a little boy on her back'. Were you there??
Then I switched on my laptop and you had pm'd me about this new thread - thanks!! I'm delighted that you included me - I hope I'll be able to contribute in a good way. I've been really up the walls lately and stressed too. I'm doing a course for people (like me) who look after someone with dementia (my mum), so that's been eating into my time. Then mum who had plateaued for a while disimproved a bit over the past couple of weeks. Then I go to a BC Support group on a fri (80mile round trip) but I think I need it. DH and I are a self employed couple and business is non existent at present so that is posing some serious problems and stress. Also I am at present trying to clear out my mums old home (she now lives near me) and that is taking ages and it's quite emotional - it's so hard to deconstruct her home, belongings, even rubbish accumulated over her lifetime.
On a positive note I didn't have to worry about Halloween sweets (candy) as we live in a rural area we get no callers - awh!!! I'm due back to the hospital next Tuesday to have my port removed - that must be good? And DS is in a play that I must go to on Wednesday night - he's in the university drama society.
cpara - in your soup recipe what measure is a cup, please?? I mean how many ounces or grams or fluid ounces. Thank you.
And to everyone else who has joined the thread - I am at present waving giddily at you and trying out the secret handshake!!!!
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Ainm: sorry to hear about your Mother. We went through that with my GM it was so hard. Waving the secret handshake right back at ya.
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QOTD signing in!!! Can't promise how often I will get here but hello to everyone I haven't met b4 and just to let you know that down here in Oz I'm not sure how secret our secret handshake is. When I had the photo taken I posted on BOT thread I had about 50 of my nearest and dearest watching, yeah pretty embarassing, but I figured I have had that many people looking at my chest over the past year what was another 50!!!!
see you all soon
another twisted sista
big hugs
Helena
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Hi Everyone! Thanks for the invite Rachel! I fell off the no alcohol, caffeine, meat, dairy or sugar wagon this weekend. I drank a couple of glasses of red wine and then I was so hung over on Sunday I had to eat Halloween candy! Oh well...today is a new day! Last week when it snowed so hard in Denver, my son wanted me to go sledding and I told him no. Then, I thought about all those months that I was sick from chemo and how I would have paid a million dollars to go sledding with my little boy. So, I put on my snow clothes and out we went! We had so much fun! I have not laughed that hard for a very long time!
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I am here...thanks Rachel!
Busy at work...just checking in for a second! I'll make this a favorite and visit often!!
Lisa
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