Great saying about depression
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Ha ha ...Debbie I would if I could ...sorry you had the flu...blaahhh...Belinda I am in Baltimore city head on by....I have red velvet...peanut butter and jelly..chocolate chocolate and caramel in the fridge. Seriously PM me if you ever want to meet up for wine...dinner...cupcakes! I am always up for the company of a BCO'er
I am literally sick to my stomach from over eating at my nephews party. I took the rubber bands off my braces and made up for all the food I couldnt chew all week.
My cupcakes were a big hit and my nephew especially appreciated them so I was happy to do it..although I think I am done baking for two days and not getting paid. NO MORE FREEBIES..unless one of you ladies were to pop in then you can have all the cupcakes you want.
Its a gorgeous night here in the City...I just got home from my crazy family and I think I am gonna pour a big fat glass of red and watch a movie. Have a good night everyone!!
Diane
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DiDel - your cupcakes look scrumptious (sp?). I want to eat them NOW!!! Hope everyone enjoys them.
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Oh WOW Diane, or should I say cupcake Diva, those are works of art! They sure wouldn't last long around here
Hope you enjoyed your wine, you really deserve it!!Stanzie - I hear you about all things mechanical... its amazing how much I learn when I have no choice, especially when DH leaves for any extended time. I am not a patient woman, so if something is not intuitive, and I get frustrated, I usually scream "this MUST have been designed by a MAN!!!". Then I feel better and try not to pound the poor thing to death. Celebrate your successes... hey, you got water and the pool got cleaned, don't worry about the side shows, and good for you and your son! (PS. You are never alone, you got us!! Wish we could be closer than the computer screen!)
Hopeful - All positive vibes going your way tomorrow for the CT scan. Hope you're having a good weekend getting stuff done. Boy, I wish I could get my stuff done too... getting impatient waiting to mend from this MX, trying to convince myself that resting now is good because there won't be much of that once I am healed and ready to go!
Claire - Surprised to hear from you so soon but glad to hear about your work of art too! Take care of you. Kate is right, if we do too much we will definitely pay for it later. I had a couple of doing-too-much days and the following day was ruined with me in painful swelling and having to lie down ALL day trying to recover. Take it easy
Kate - Your advice is always soooo true! I am trying to be restful, honest, of course I had to learn for myself though by overdoing it a little, won't do that again. I am getting some sensation back in my arms but still lots of numbness elsewhere. I understand that this will take quite a while before getting better. My incision line is healing nicely, just steri-strips on there, but there is uneven puffiness and creases above and below the incision line. Will talk to BS about that next week. I believe she mentioned with my first surgery (lumpectomy) to give it a year and if you're not happy with cosmetic result then consult with PS. So upset about where you and DH have to be on Father's Day, holy you-know-what! Hope it's a short appointment so you can get out of there and enjoy the rest of the day
Welcome back from the flu Debbie, isn't that first coffee extra-special after such a long time, enjoy!
Where are you Barbe? And 3Jays? thinking about you too and ALL the ladies who tune into this thread.
Good night,
Donna
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hey gals.. ive missed you all, but i cleaned like a maniac before marybe got here, and really aren't done.. and she's here!!!so, i have been doing some, goinmg out, then cleaning a little..everday. ive been enjoying the stay, but boy! am i ever pooped.
tonight is my synthyroid ight, so i have to stay up most of the night, not to be too sick and stiff tommorrow.
i really agree with you, kate.. they took
WAY too long to dx the thyroid, ad i have been so tired for so long.. its gonna take awhile to build up, in the dose i can handle.. i'm really glad you're on it, hoping it'll perk you up!@didel.. the cupcakes look wonderful!!!
and, am looking for the normast.. i didn't know you could get it w/out rx.. gonna ck on that..
thanks for thinking of me, ladies.. remember: what doesn't kill us , makes us stronger...err. bull hockey!lol 3jays
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3jaysmom: you gave me my first smile of the day and it's almost 10pm here!
That saying ' what doesn't kill us will make us stronger' is more than a load of 'bullhcokey' as you so well said it. I have had many people say that to me about my breast cancer and also about what my then 16 year old son had to go through while finishing his senior year which caused him to become depressed, anxious, withdrawn and unable to sleep and horrific nightmares when he did. Oh yes, that's just what my son needed in his life, and I, as his Mom, felt helpless to not be able to 'fix' his pain.
So now 2 years later my husband says I have become a recluse as I just like to stay home on our property with my dog, cat and horses. My dog Jaki never says hurtful things to me, is there is comfort me, and accepts me for my ups and downs.....and that's a lot of downs. Truthfully, I have just weeded out my 'friend' book down to reality. Simple.
It's pouring rain here - the kangaroos have all taken shelter under the trees by the creek, and the horses are streaked with mud. My cat had relied on his box for days and my dog gives me 'if looks could kill' looks when I tell her to go outside and do her business. My DH suggested I go with her and hold an umbrella over her! Hmmm - I do wipe her down when she comes in and get the mud off her paws.
Just getting over the flu, so guess it's a good thing for me to be limited to doing things in the house, but ick, vacuuming and dusting - I'd rather be outside anyday!
I'm just so glad we have each other..........
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I love having my coffee and catching up on the West coast posters ..and Debbie!
Some of my friends feel like i am recluse too but the reality is i dont have the energy money or desire to run around town all day. Plus with my puppy i dont want to be gone all day. Its not fair to my pets. I think we need to ease back into life figuring out how we want to spend our time. I personally dont want to waste my time doing things i dont 100% want to do.
Donna glad you're getting up and about. Hope the swelling is minimal.
Hopeful good luck with your scan today!
Claire i hope each day is getting better. I didnt have that type of recon but can only imagine the difficult recovery. Be gentle to yourself...rest up! Thinking of you!
Hugs to all that need one!
Today i have to catch up on all the work i did not do while i was baking. My friend is having her MRI tomorrow then BS presenting to tumor board then he is meeting with her Tuesday night to discuss results and recommendations for treatment. Ugh we all remember those first couple of days/weeks. I feel for her and anyone else in those early days. I told her she will feel better once she knows what she is facing and has a plan and team in place. I am mostly concerned that she gas this cough she cant get under control and BS recommended a doctor to her who is a lung cancer specialist. Who btw she cant get an appointment until September! She is such a nervous wreck she has lost 5lbs and us down to 87lbs! She is a shorty but that is too little. I told her about BCO but she isnt ready.
Love you all
Enjoy today
Diane0 -
Donna- I've often uttered the curse "this f'n thing was designed by a man"- pretty much anything computer, automobile or mechanical related. Oh, and instruction books!
Stanzie- I am so so lucky in that my DH is incredibly handy. He just seems to be able to figure things out while I stand there scratching my head feeling like a dog watching t.v. Oh well, we all have our strengths. Good for you for sticking with it and figuring it out.
Hopeful- Good luck with the scan today. Let us know how everything is. (((hugs)))
Debbie- Were your ears burning last night? (Or would it be this morning with the time difference? I can't keep it straight.) We had some friends over last night and the conversation turned to snakes. So, of course, had to tell them about the one that lives on your porch.
I love hearing about your home life. It sounds so interesting and so different from here. I'm coveting your pouring rain as it's dry as a bone here. This is the time of year where it becomes survival of the fittest in my garden. (Usually it's only the weeds that come out on top.) So my darling DH, after I had a night of food poisoning the night before, decides to invite 8 people over to our house for dinner without checking with me. (Thanks honey.) Thank God, the house was clean and he does all the cooking or I probably would have strangled him. It turned out to be a nice night but I find myself really struggling to make small talk for that long. Next weekend one of our friends is having her 50th birthday at a local resort. Our whole gang is going for the entire weekend with events planned for all 3 days. Now all I can think is, "What have I gotten myself into?" Not sure if I can be "on" for that long. At least I have a hotel room to escape to when it all gets to be too much. I wonder if we will always struggle with this or if it gets better with time?
BARBE- WHERE ARE YOU? We're also missing Elizabeth and Kathleen! Come out! Come out! Where ever you are! Olly olly oxen free!
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I agree with only doing things that you REALLY want to do. That's one thing I have already decided about. I am too much of a people pleaser. I am not going to be selfish but I just need to think about me for a while.
I do remember those early days (only back at the end of April for me). I was terrified and felt so isolated. I reached out to a friend who had a much trickier case than me. I just blurted it out. Felt so bad but just needed to reach out to someone who knew what that terror felt like. I wish I would have known about this board then. I had stopped looking on the internet at that time...it was making me more frightened. So glad I found this place!
Now if only I could get my 20 year old and 11 year to help me clean! LOL.
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I have to post now though I've only gotten to page 123. If I don't, I'll forget everything!!
Diane, those cupcakes look so good people will assume you bought them! Where did you get the clear carry thingies???
Kate, with natural stone, you are supposed to seal and then re-seal the stone every year when it's in a shower. My sister has it and one of her kids will usually seal it for Mother's Day for her.
As for thyroid meds, I've been begging for my thyroid numbers to be checked for years as I only had 1/2 a thyroid. Now that my whole thyroid is out, I've had the medication adjusted THREE times!!!j Shows how low (or high?) my numbers are. I get bloodwork every 6 weeks to see if another tweak is needed. I do feel more alert, and calmer. Don't know if it's those meds or not.
Whoever was on pain meds, which ones? I've gotten myself off narctotics a number of times, but found getting off Hydromorphone (a synthetic morphine) was tough with "busy legs" at night, too! I used Lorazepam to help me wean off. Then I had to go back on Morphine Sulphate as I really do need the heavy guns in pain relief. I have finally come to the conclusion that I won't ever be going back to work again. Some days I am just bed-ridden, by back is SO bad! My docs office forget to put in the req for a spinal MRI and now I'll have to start a new wait period!! I see him tomorrow and will see if he can put it in STAT. I can't go back to the spine surgeon until I get a current MRI. Then I have to wait to see him, too!
DCIS doesn't get sentinel node disection as DCIS is only in the ducts. They are trying to do less node disection on everyone, as some of us, me included! get LE from it! BUT, remember, you have nodes in the regular breast tissue that they take away with the MX. And yes, I DO believe your surgeon was digging around in your armpit looking for clumped nodes. It will be painful for a bit, but will go away.
Okay, now to page 124. Claire, good to hear from you! Stanzie, thanks for thinking about me...
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I usually only lurk and applaud your ladies for your perservance and carrying on in spite of everything. I'm jumping in for a minute about DCIS & nodes.
I had BMX for DCIS last February. Also had biopsy of two sentinal nodes on each side. My BS & Onc both said that was critical. Maybe it depends on the size of the tumors you have inside the ducts whether they do the SNB or not? Unfortunately I developed truncal & chest LE on one side so have a compression bra & sleeves for "heavy work". We're all at risk.
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Belinda- Welcome! I didn't discover BCO until a month after MX and 3 months after dx, either. It made such a difference being able to connect with other women who got it. I told my BS she should recommend this site to all her patients!
MinusTwo- Welcome, too! You and I are going down similar paths. I had DCIS, SNB, 2 nodes removed on each side and was just dx with LE in the arms (bilateral) and trunk. Also have to wear the sleeves for heavy work. Knowing what I know now I wish I had said no to the SNB on the good side. The "L" word was never mentioned to me, though. How about you? Seems like if there's a risk of developing a chronic possibly debilitating condition it ought to come up in conversation, huh?
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Belinda and Minustwo...yes welcome and glad you're posting. I lurked for month but didnt chime in till i was going through chemo. Definitely wished i found BCO during my mx..but finding the lump to diagnosis and surgery was so quick i barely had time to digest the diagnosis. I am grateful for everyone here.
Barbe I have been baking since i was a teen. I am almost expected to bring dewssert and bday cupcakes.Peeps know by now there are no store bought desserts if i am there. There is this cake supply shop nearby that sells the cupcake containers. They are great they fit so nicely in my fridge and I try to reuse as often as i can.
Forgot to mention...when i put the cherry on top my cupcakes i giggled and thought of my recon sistas! LOL
Good night all...need to roll myself into bed..i cant stop eating cupcakes
Diane0 -
Kate, why did they remove two nodes? Was one positive? I'm thinking no so... confused why they would take another. Did you have DCIS in both sides? I always find it .... curious that so many doctors have such different protocals for the same diagnosis.
Ah - I think Barb answered my questions about that. And Yes it was me trying to get off the pain meds. He said to take 1/2 pill every other day. Well that doesn't work at all, so I'm going to do my own protocal of taking 1/2 for a week then will take a 1/4 for a week and then try the 1/4 every other day .... as it just isn't working for me....
Sorry about you having to wait so long for the MRI - hope your doc can help you with that!
I agree doctors should give out BCO to all new patients
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Stanzie- Not sure why they did two on each side especially the non-cancer side. I didn't know enough back then to question it. If I only knew then what I know now. sigh.
Good luck with the detox of your pain pills. It sounds like a horrible experience.0 -
OOOOOOhhhhh, I would be SO angry Kate!!!!! IF they found IDC within the DCIS, then it would have justified taking the sentinel nodes. But that is such old school!!! Even now, they are resistant to taking ANY nodes due to the fact that 30% of women get LE!! That is a HUGE number!! My surgeon didn't "believe" in LE, it was my Onc that diagnosed it. I even had an excision revision tryng to get rid of some extra loose skin. The surgeon was stunned at the result. He swore he took a large chunk out. The recurrent swelling was LE...not extra skin!!!
There is also no reason to take the sentinel on the non-cancer side. I would be beside myself if that happened to me. Holy crap! In the "old" days, they used to take entire rows of nodes!! Then they realized how stupid that was and stopped doing that.
Stanzie, sometimes you can't break these pain meds as that means too much drug hits your system. What were you onl, if you don't mind my asking?
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No I don't mind it is Tramadol. Yes have been splitting the pills....
Kate, my surgeon said on my cancer side I had LCIS and DCIS. The reason he took the sentinal node on that side and only the one is that once I had the MX then they would be unable to find the sentinal node again and it was just a precaution to make sure there was not some small bit of cancer cells that had gotten out. On the other side with no cancer he didn't take any nodes. He said the reason for the sentinal node to be taken is it will light up positive if the cancer has gone to the nodes - If it is positive then you take another one and then another but testing each one along the way to know when to stop. Once you get a negative node you don't go any further. I'd ask the surgeon whether any of the sentinal nodes were positive. If he says no they I'd say you have a case against that Doc. And ask if he thought there was any cancer in the other side - he should never have taken the other sentinal node.
Kate, I'm so sorry. I had no idea they had done this to you. Sounds like the surgeon and the second plastic surgeon really screwed up. Again so sorry!!!! (hug)I know this news will be even more upsetting.
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I had DCIS within my IDC tumor. They told me it was somewhat common of a finding?
When the took my sentinel nodes(4) there were 4 other non sentinal stuck in the same tissue. They just kind of came out with everything else. I am hoping I don't develop LE. I can't wait to get back to the gym!
In the grand scheme of things, my complication is small compared to what some of you guys are going through. I know that. Just frustrated that I am back to square one with my incision opening (because of hematoma). I just want to get on with things. I think one of my life lessons thru this to start going with the flow and that I don't control everything. Such a hard lesson!
Oncotype results tomorrow. If chemo is a no, going to ask if I can start the tamoxifen while I wait for this thing to heal. Just don't want to waiting another 6 weeks without sometype of treatment happening.
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Belinda good luck with your oncotype results...fingers crossed for a low low number!
I had DCIS in my primary tumor as well..initially I was so confused about my diagnosis..I was not happy when i realized it was invasive...then multifocal. That was a major meltdown day for sure.
Hopeful any news on your scan? You feeling ok?
Claire Donna hope you're resting comfortably.
Ugh Mondays..thank GOD its almost over.
Hugs to all
Diane0 -
Belinda, it is common for DCIS to be found around an IDC tumour as that's what it turns into eventually. Once the DCIS breaks through the duct, it's no longer technically DCIS and is now IDC. They treat you for the IDC as it is the more advanced cancer. That's why Kate's surgeon would have tested her nodes, though it would have been better to have done the testing during her surgery and then stop when no IDC was found, and not take out any nodes. Testing on the non-cancer side was just not fair.
You can develop LE just by having breast surgery that somehow changes the lymph flow from your breast (reduction for example). Being active in the gym does not help, and you may harm yourself instead. In fact, you should get an assessment by an LE physiotherapist who would fit you for a sleeve to use during your gym activities. That may help prevent LE from developing, but it can develop as far as 20 years out! Any strain you put on your upper torso including your arms can be detrimental to your lymph flow!
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Hi ladies, No word yet on the scan. Yesterday tough as I felt the anxiety build also because I am having surgery on Friday to continue to fix some of the issues related to the complications I had. The recon that never ends.......... I realized that I was getting really anxious. Knowing what can happen having lived it makes it difficult to stay calm before my surgery. This will be number 7. But I am thankful there are things to be done to fix it. And I am thankful to be able to vent safely about the anxiety here with people I trust. Because no one else has a clue how the endless surgeries get you down. The tests to make sure you don't have mets are so scary.
But today........... I am living with hope and determination to make THIS day a day I can be at peace with.
Belinda I hope your Oncotype results are low so no chemo!!!
I will let you know when I hear something. I think it should be today or tomorrow.
Have a peace filled day ladies
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Hopeful - goodness you are dealing with a lot all at once. Hope you hear good news soon from the scan so you have no worries going into surgery- apart from those surgery worries of course. But Hoping they get everything fixed and looking wonderful! Thinking of you!
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Belinda- Ditto everything barbe said. Everyone is at risk of LE but the more nodes removed typically the higher the risk. I would definitely get an LE eval before hitting the gym too hard and wear compression sleeves when working out. Good luck with the onco results.
Hopeful- Hope you hear something soon. We all understand that anxiety. Sorry you are having to go through yet another surgery. I know how hard it is to come to that decision and to psyche yourself up for it one more time. And a lot of people in our "real" life don't get what a big deal it is. My friends really rallied around for MX but with each additional surgery that faded. I think everyone thinks recon surgery is a vanity thing when it's just a "trying-to-get-comfortable-in-my-own-skin-again" thing. I think it was only here and with my wonderful DH that I was understood about that. I know how unhappy you've been and I really hope this surgery is able to help. We all deserve to be left feeling as whole as possible after all this.
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Thanks ladies. I truly appreciate the support. The surgeries are related now to the failed NSM. It is so true that no one gets it. And they don't want to hear about it. So you put on your public pollyanna pink face and then when you are alone you worry and cry and try to deal with the sadness of this permanent change. All the while being so very grateful for the fact you are at this point in time NED. And all the while trying as hard as you can to take a step forward each day to acceptance. And all the while cherishing your true friends and hero husbands or significant others or children etc. I think I should hear today.
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Good morning, The CT scan was essentially negative. Small area on liver they believe are cysts. Adipose (fat) go figure around one kidney and something else on the other can't remember but two doctors looked at it and did not seem to be concerned. Thanks for your support!!
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Hopeful- That's great news!!! Now you can move forward with your surgery with a lighter heart. I'll be gone for the weekend so want to post now- good luck with everything. Hope it's another step towards moving forward and that it improves things. (((hugs)))
A friend of ours is having her 50th birthday at a local resort and the whole gang is spending the weekend. I'm trying to get excited about it and wondering why I'm not. Just choosing an outfit was stressful. It used to be so easy. Now I think about foobs, LE swollen arms, etc. and even clothes shopping is full of angst. Don't even get me started about the pool time. (Are mumus in style?) I think it's the thought of having to be "on" for 3 full days, though, that's the hardest and I wonder if I'll ever return to the old me in that department. At least I have a hotel room to escape to and my DH and I are looking forward to getting away. We haven't been off alone in over a year. My stepdaughter is coming to stay with our DS so it'll just be the two of us.
Hope everyone has a great Father's Day weekend and hope you have Dads still around to celebrate with. I sure miss mine. I can't wait for my DH to see his gift. I bought one of those photo frames and loaded it with just pictures of my DH and DS- almost 300 of them! They range from birth to last month. It's been so fun going through old photos but I'm realizing how fast time goes!
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Thanks so much Kate. Yes I will be able to go tomorrow with a lighter heart.
I am so glad you two can get away. Will you be outside a lot? The long maxi dresses of my time are back in. I wonder if you are inside in the air a lot if a cute sun dress with a halter style top and cool pashmina would work? So the drawstring type of neckline. I know what you mean about clothes and just worrying if it all looks normal.
And I find I can't be around a lot of useless chatter. I find I need to be around people who get it. As you are still dealing with the LE and all of that it is your focus and people look at you like she looks great so she must BE great. They don't know the anquish you are still going through.
You will never be the old you. How can you be. But you will be the Kate that is a woman who has gone through an incredibley difficult year or so and has done it with grace and class and determination. You are the Kate that helps others and is compassionate and can empathize and give back. So not that you were not all these things before. I know you now. and that is the woman I see. My hero husband once told me what is sexy in a woman is a woman who is confident. We can be that. Confidant in the fact we are stronger than imagined, determined and passionate about the issues around BC. Confidant that we have husbands who know our struggles our scars and love us more than ever.
So dear Kate go and enjoy and celebrate the two of you!!
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Dr. Susan Love just posted on her blog she has leukemia.
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Hopeful what a lovely post to Kate and I totally agree with you. So glad you got good news! Now just hopeing your surgery is successful and recovery is easy as possible. I'm afraid I'm not sure who Dr. Susan Love is?
Kate, I have seen lots of those maxie sundresses but then you don't need to cover your lower half. I'm sure your arms are not as bad as you think but I think the Pashmina is a perfect idea so you can still be cool, stylish and feel good about yourself. I've found halter tops for bathing suits and such are the most flattering with the new foobs but I have trouble with covering the awful back scars.
I think once you are packed and on your way you will relax and get excited and enjoy yourself. I hope so!!! Getting away will be good for both of you! Your hubby's Father's day present sounds lovely and you all can enjoy going back over all the wonderful memories.
Hope will be thinking of you tomorrow!!!! Write when you can and let us know how it went!
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Hugs to all who are suffering in any way!
Stanzie, so nice to "see" you!!
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