CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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yw
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Good Morning Crazies!! It's Friday!!!!!!!
First things first.
Pennsygal, Thinking of you. Hope your surgery went well on Monday. Best wishes for quick healing!!!
Gaia, I've always loved storms too. It's a great time to have a fire in the fireplace and make a big pot of homemade soup or stew!! Difficult to think of stormy weather when it's been in the 90's here.
Katy, Thanks for all of the information regarding a private screening. I will be watching the movie this weekend and I'll have to give some thought on where I could have a private screening. And....wow, wow, wow.....you've been a busy advocate!!! Getting the LGFB program to change over their makeup would be a huge accomplishment!! You go girl!! Your nephew sounds like an awesome kid. I guess he really isn't a kid, but he is around the same age as my children, so in my eyes he is still a kid!! haha
Kathy, Smoking coconut oil??? Hmmmmm.....I thought it was smoking asparagus that cured cancer???? I'll have to rethink my treatment options. haha
Rain, Good luck today at the BS. Hoping you can get those nasty drains out. Such a great idea to return bowls filled with tasty treats!! We will all be in your pocket tomorrow during your Herceptin infusion!!
Ducky, I LOVE those pictures of Bobby!!! Brings back so many good memories of feeding my own babies!! He is just too cute for words!!! Thanks for sharing his pictures with us!!!! Looks like you may be spared the worst of the hurricane?? At least that is what the weather report said this morning. I sure hope so....you're already getting so much rain.
Lucy, HI!!!
Thinking of you my friend!!!!Sula, Those cakes were beautiful. I also like the top cake!!! Thanks for sharing your picture!! I absolutely LOVE your curls!! I wish I could get my curls to look like yours!!! Beautiful picture!!
PTS, I have an open guest room!! Not sure how long I'll have it, but you're welcome to it while it's open!!!
Rose, National Storytelling Festival sounds like fun. I hope you're feeling up to going!!
M0mmy, Hugs back to you. Love your morning hugs!!
shorfi, Happy Anniversary!!! I hope the weather changes and you're able to go out and celebrate!!
momwriter, I will join you for that chocolate croissant!! I just now noticed that you joined BCO after all your treatment was finished??? WOW.....wish you had found us sooner but so glad you found us NOW. Love having you here with us.
Got a call from my Endo doctor yesterday with my US results. I guess the nodule is small enough to monitor for another 6 months. She told me if it gets to 1cm or more in size, they will do a biopsy. That sounded great to me!!!!!! Next up is the echo for the pericardial thickening and appointment with the cardiologist. Once that is all finished, it is my hope to stay far away from doctors for awhile!!
Hope you all have a wonderful, pain free Friday. Love to all....waving to our quiet crazies!!!!!
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Beppy- so glad for the results you just shared on your US. Collective CTown sigh of relief!
I just got off the phone with another person at the hospital. She was coached into a very good idea of keeping the LGFB program, but including a component of how to research your own skin products and possibly a fun session on how to make your own soap, for example. Sadly, she clung to the idea of "not upsetting the ACC's corporate sponsors" but adding a caveat.
Like: "here's some make-up, wink wink. You better check the skindeep website before you use it though..."
WTF. Follow the money. I'm fighting on. I sent her some links and she asked me to send her a letter with some links and stuff she could share with other people.
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Good heavens......it is pouring here.........my house is so damp feeling and so chilly.....(can't bare to use the word "cold" yet)...........'but honestly it is cold..........
Yesterday too......last night around 7 I was so cold and could not get warm, so I got a hot shower, put on my plush fleece robe which I have nicknamed "Fuzzy Red", and made a nice cup of decafe coffee, and got under a blanket and played games on my Ipad.......would have gotten into my jacuzzi, but the LE says "don't try it"......nice huh....a lovely warm jacuzzi and I can't use it.............and don't tell me to lower the water temp.....cause that will never happen.....LOL....I cook myself which is against all the LE rules................so instead I just forgo the jac;uzzi........
'
But honestly it is miserable here.......damp, raw, cold, ugy......................another Fuzzy Red night...........0 -
Taking a break from emailing friends and family to let you know that I got two pieces of good news today. Pathology report from surgery shows no evidence of disease, clean lymph nodes, and clean margins. This is an enormous relief, needless to say! Of course I am mindful--as every one of us is--that it can come back, and I doubt very much I'm off the hook for adjuvant chemo and rads: this was a very aggressive cancer. But I'll take it!
And on a more mundane level, he took the drains, all three of them. He thinks, as do I, that this storm definitely influences the amount of fluid leaking out. So I'm very sore and tired, but I'll take the good news!
Beppy, glad to hear of your US results. More later when I've had some sleep. Napping on the sofa sounds about right at the moment.
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Rain, That is AWESOME news!! Doing a very excited happy dance for you!! I hope you're able to rest your mind now, as well as your body.
Katy, It's frustrating how hard it is to change the status quo when it comes to everything pink. I admire your tenacity.
Ducky, I think we need a happy medium. Mix a little of your cold weather, with some of my hot weather and we would have the perfect mix!!! Fuzzy Red does sound very cozy!!0 -
Rainny- 🎉🎉🎉 so happy for you on the great path result and getting all of the drains out! I'm sure you will be more comfortable now. I'm doing the happy dance too! 💃💃💃💃💃💃
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Rainny, you sound like you are on a good path.
yeapper, hot tea, ooo, maybe cocoa?
back from a lecture at one of the local churches on wills and stuff. Now why do I feel so blue? it was good info and explained and answered many of my questions but still~~~maybe it is the cold damp wet stuff around here.
off to make some cocoa and get warmer clothes, not ready to turn the heat on but sure do feel chilled
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PTS, I've been putting mine off for so long. I know it must be done though. I keep saying "next month." I've been doing that for years now. haha Good for you for taking the first step. I will try and follow your lead.
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Hi Again Crazies,
I know we've talked about having a day when we talk about our moms. I thought this weekend would be a good time to do that. Some of us are stuck at home recuperating from surgery, others are going through active treatment, and some are just trying to adjust to their new cold weather. I thought maybe we could post a picture of our moms and tell a little story....could be funny....or heartwarming....or maddening...haha. Whatever you choose. Just a fun way to pass the time and get our minds off of going to Crazy Town. I really enjoyed hearing about Gaia's mom (the mother ship) when she came to visit and Katy's mom and her fun party. If you don't have time or know how to post a pic, maybe just a small story??? What do you all think???
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Iris and Beppy- make sure you include doing an Advanced Directive while you are at it, and make sure there are copies everywhere, and easily found. You might as well do it while you are doing the will stuff and get all the unpleasantness out of the way at once.
You can download ADs and many hospitals have booklets they give away. Unlike a will, it's more of a yes/no form. A good place to get started. I think of it as a way to protect my loved ones from having to guess when decisions need to be made. It can help avoid excess grief caused by wondering if they did the right thing, andwhat you wanted.
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A great idea, Beppy! I am off in search of a nice picture now.
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ok, so just had my first post chemo mammogram today, results next week I'm sure. So may be in crazy town a few days!
Also got an echo instead of a MUGA done, all came out great. A side note was that it also said no pleural effusions detected, which I think is a really good thing since my receptors say any metastasis would probably go to soft tissue first
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Jackie, the seminar covered all the legal docs and was given by a lawyer, I had gotten many forms in the past but it creeped me out to do the dang things
advance directive is likely the toughest thing as who do I ask to make the really important end of life choices? have not gotten all together but will.
also I will definitely see a lawyer to do the forms, my doctor last meet actually asked me if I had the advance directive, guess she was getting her files up to date as well
off to drink my hot cocoa
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Katy, Thanks for the info. I do have an advanced directive. It's resting in my in box - unsigned. haha......I really must get my act together.
Italy, UGH! Waiting is always so difficult. We are sending all our good vibes your way for a good squish-o result!! Also, because I like to celebrate all wonderful news.....you get your very own happy dance for good echo results!!
It's Halloween month. I thought this was an appropriate happy dance!! haha
BTW...Lurch used to scare me so much when I was a kid. I would hide behind the curtains whenever he was on the screen.
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the beauty of the AD is YOUmake the decision. You only ask two people to make sure YOUR wishes are carried out. I was that person for my mom and my brother. It helped to know I was for sure doing their bidding. It doesn't have to be a family member. It could be someone (not a Doctor) in your church congregation etc.
I havd asked my BFF and brother. I know they know what I want. No pain and no heroics. Simple as that.
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Italy- Great news on the echo. I'm planning for some champagne on your behalf next week
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Katy, that is a great way to put it, no heroics or pain is my choice also
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A very comprehensive and interesting article
Another sista on another thread shared this today. I thought it was a very thorough article about the issue of overtreating patients. There are points of view from patient and the medical field. Well worth a read
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Good Evening Crazies from a wet windy wailing Martha's Vineyard
Our last night here, for now.
Katy it's great the headway you are making with the screening, even if you are still bumping into some 'follow the money' /'don't upset status quo' issues. Still it sounds like they are willing to work with you. Step by step, right? Hope you are feeling a little better after yesterday's incident. It is heartbreaking. On another note, I finally started Prodigal Summer. Amazing- just my kind of prose.
Slow so happy that the US result was good and sending the vibes for the 'all clear' with the pericardium. I also like the mom story idea, would love to hear more about everyone's mom. Ducky shared some rare stories of her mom awhile back related to her moving across country to 'Washington' to be with a boy. Am I remembering that right?
Sula I also meant to say, that is lovely picture of you. Thanks for sharing.
PTS and Katy too ( and Slow) yes the AD is important and you all just reminded me to light that fire under my ass. I have the papers printed out and I know Seth will be my proxy, yet I may also consider a secondary as well. The thing I want to understand more about is all the specifications I can make with the scope of say DNR or other 'life sustaining' methods that I would NOT want under certin circumstances. It's a bit of a ball yarn to unravel- at least it feels that way to me.
Ducky, I hope you stay cozy and warm. The pictures you posted of Bobby are precious.
Rain, so happy you got the drains out all at once and especially that the path report was CLEAR! fantastic. Take refuge in this stormy weather and cozy up on the couch with a cup of tea. I am hoping to score a few bottles of raw milk to bring back to make mullein leaf chai. I wish we could obtain raw milk in NY. I may need to join the WPF again to get in on a raw milk /dairy co-op. Anyway I ramble.
Italy, great on the echo and thinking of you with regard to great/clear mammo results.
Shorfi Happy Anniversary-
We've spent our last full day meandering from eating, to reading, to working on a puzzle ( something we both love to do, but didn't know about each other till this week), to lazing in bed and rewind.I'm sad to leave tomorrow, but feel fortified and so grateful that we had this week away.
OK Crazies- you are always with me.
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Is this possible? I was told by my surgeon we had negative margins on my 7mm IDC from a surgical excision. I have a sentinel lymph node surgery scheduled next and then supposedly on to treatment. Radiation, Tamoxifen, whatever else comes up in the SLN pathology. As she was reviewing the results of the post-surgical MRI, the radiologist report asserted positive margins on the cancer. She said, "the radiologist doesn't know what I did in there." And she marked in my chart that I had inflammation from the lumpectomy making it look like positive margins. Well, after waiting and waiting, I finally called the office to get the pathology report and it shows that I also have a small amount of DCIS, and that those margins were negative, but that .4cm POSITIVE margins for the invasive ductal carcinoma. I read it three times through and in several other places it mentions the IDC being right up against the ink stain. And one other place mentions the .4cm. Can this happen? Is it possible my doctor didn't read the pathology report closely?! She is supposed to call me on Monday when she is in again. In the meantime, CRAZYTOWN!!! After what happened with the mistaken discordant needle biopsy, this is really distressing. I also have yet to get a nurse navigator, and the nurse at the breast surgeon's says she is my nurse navigator, but she couldn't answer this question at all... "I'm not a pathologist" was all she said. And kind of short and always sounding very busy. I have phone numbers for a different cancer team from someone who had a whole different kind of experience, I think if she admits this was a mistake, that she was about to go do the SNB and leave that little bit of margin in there, I'm going to have to change teams... I thought there would be more of a safety net than that?!
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Not going anywhere tonight. This is not a night that is fit for man nor beast!
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Jackie, I had seen that article. As a DCIS person who went the full deal of lumpies, rads and then the dang PILL, it does make me wonder if I was one of those over treated. Then again, I had a bit of micro invasion. Then again, I am clean almost 8 years out so what to think?
side effects sure are not fun but invasive cancer would be much worse
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Eggroll- that is indeed most confusing and distressing. And why do these things happen on Friday?
I'm going to make up a cozy little room with soft blankies and lavender and a down comforter and a nice hand made flannel quilt here in Crazytown. You will need it this weekend.
In the meantime I would seriously consider taking that path report for an independent opinion onwth it means, and more importantly what it means for you and your future tx plan. You are allowed to google for a new doctor, but please don't spin yourself up any further trying to interpret such a jumbled message.
I myself tend to believe pathologists over any others. They do not have any skin in the game usually, and no egos and reputations to protect since they work behind the scenes. I might even consider getting a second pathology opinion.
Do not panic. You have time and a good head on your shoulders to make a plan to get the answers you need.
We are all here for you. Hugs.
And what kind of tequila do you want me to stock in your CTown weekend accommodations?
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Will, AD and POA for health care done. You can always ammendment your will and change your mind about AD. II did visit an attorney to have all of that done. I made my wishes know to brother and Mom. Since she passed just 2 months ago I have to find another emergency contact. Her passing without a will (intestate) and me not having POA made it difficult to cancel phone, cable, insurance, utilities, bank... I wouldn't want to do that to someone else and yes it isn't the most fun thing to do.
So a story about her. She was always ready with the advice, giving it that is, heeding her own words, not so much. Lessons were learned with every encounter. Imagine her grandson's surprise when he thought he was playing a fun game of blackjack only to realize that it was math in disguise.
I am beginning to miss her and was looking for her name on the caller ID when the phone rang earlier.
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Eggroll
I am sorry you are facing these unanswered question, especially over a weekend. You are not CRAZY, this needs to be sorted out and from the picture you are painting, I would probably start researching getting a second opinion on everything and maybe set yourself up to have some numbers to dial Monday morning.
Cozy up in the room Katy is preparing for you and know we are all here for support.
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I slept in today. I was so exhausted from all of the normal activities this week!
Eggroll, If you have ANY doubt about your team, get a second opinion or another team. Your successful treatment is too important. Maybe your nurse navigator realizes the doc erred when reading the report, but just doesn't want to contradict her boss? Big hugs as you work to get this all figured out!
Shorfi, If the weather is to awful to go out in, maybe your could just celebrate inside?? My husband NEVER complains when we have to do that. ;-)
Looks like the rest of us are getting good test results! Awesome!
Slow, If you come up my way for tests, let me know. I'll meet you, hold your hand during the tests, whatever needs to be done to help you! Maybe go have lunch and magical ice cream afterwards!
I have some good news to share! This is the best news, especially since I was more upset and concerned about this past year than I was about my cancer stuff. Last year in August, my high school senior son had some serious mental health issues. To call it depression doesn't really properly characterize what we were facing. He was angry with us, blamed us for everything, stopped eating and taking care of himself. Although he hasn't told us exactly what brought this all on, we now know that his best friend tried to commit suicide in addition to my diagnosis. (I'm his "person"). Anyway, he missed so much school while he was in treatment. Even though he is an A earning, Advanced Placement student he did not complete 3 of the 4 units of his Economic class and was not allowed to graduate with his class. (He did manage to make up the work in his other classes.) This week, he finally finished the last of his Econ work and will finally get his HS diploma. His treatment is helping him cope with all of his issues and our relationship is improving. Considering he was one of the top 10 seniors in his class prior to all of this, we are just glad that this is done so he can move forward to where he wants to be. We will deal with the college issues later; right now we are just enjoying this.
My DH, middle son and the boy who lives here part time just left to go backpacking in the High Sierras! Hope it doesn't rain and snow too much on them. The boy has never been camping, so this should be quite an experience!
I'm not sure if I will hang around for the mom stuff. My mom left my brothers and me at home alone so she could go live her life... every night of the week. I pretty much raised my brothers and kept the house. Eventually, she became an alcoholic. She is abusive and I ended contact with her about 15 years ago; I told her she needed to chose the alcohol or me. Since my diagnosis, she is trying to have a relationship. I am cautious. I missed out on a lot of the having a mom stuff.
I have found some Mom figures here on the board! Sisters, too! :-)
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I spoke with my nurse case manager through my insurance and I had to explain what Arimidex was. Since I am doing so well we did the exit interview but I can call back with any questions.
Yeah to the drains coming out!!! Seromas can be drained if you find do yourself sloshing.
Egg roll I concur with what Katy said. I think they consider clear margins >0.5 and the pathologist is the one doing the measuring. Snuggle up with the blankets in the lounge and veg out with a good movie or book.
Katy, you activism is inspiring.
SDB, Cousin It used to give me the heebie jeebies.
My brain is mush. Safe travels to all those out and about. Stay dry to those of us on the eastern seaboard. Batten down the hatches to those in Fl. Prayers for those of you in Oregon and Cali.
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Poppy- you and several others here are sisters and aunts.
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Poppy, I have a nephew who is also very depressed and I really pray for him to come out of all ok. His dad is a first class idiot. Finally my sister got a divorce and my nephews are trying to heal. My sis seems to have healed from a long and nasty time but times I get scared for him'
yeah for the dang storm seems to have missed the coast!
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