CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Rose..............your doing the right thing..........you don't need that baggage anymore.......move on..........and if having him around now brings you stress.........UNLOAD..........worse thing for anyone with BC is stress............
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Gaia.. Please don't go..!! You are inspirational to us all.. You prove that we can all have an amazing, wonderful life even if we do progress.. Look at you.. Planing ypur beautiful wedding with Seth..:-) Its always upsetting if anyone has any form of progression .. just the same as if friends are going through any sort of trauma in the lives.. because we all feel each other's pain.. Love you Gaia xxoo
Italy.. BaHaHa... love ypur photos.!! It would of been such fun !!
Slow.. Thanks for the flowers.. They're very pretty.. I'm going to put some lemonade in their water so they longer :-)
HI to everyone.. Have to rush.. We moved into a new hone about 3 months ago.. It's on close to an acre of land, and now that the chook pen is built ( HaHa) and fencing is done. hubby is ready to start on the garden beds.. We have a garden planner coming to the house this morning.. She draws up plans of garden beds. terracing, and what to plant where.. I'm excited to see what she comes up with.
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Slow.. Just wanted to add I could never imagine you being a realestate agent.. HaHa.. You'd have to tell the truth.. I can here you saying.. No. no don't buy this house..It's awful.. You'd be better of just keeping your money in the bank !! 😃
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Forgot to say.
. Rose 🌹... Thinking of you.. Sorry you're going through this, but I seriously think you will be so much happier without him. You deserve better.!!! (Hugs)
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Aw, crap. Just got my DexaScan results back: osteopenia (thankfully, not yet osteoporosis). Guess I shouldn’t be surprised at almost 65, having taken PPIs for GERD for so long. (Tried milder acid blockers like Pepcid or Zantac, which didn’t work well--and when an integrative MD put me on deglycerrhized licorice instead of Protonix, my heartburn came roaring back). Singulair (for my asthma) can also cause bone loss, but I’d like to be able to breathe, thank you very much. (And if I switch to an inhaled steroid, there go my vocal cords and my music career). MO wants to discuss bone-strengthening meds when she sees me in Feb. Wondering if I should start sooner, considering by the time I see her I’ll have been on Femara for over a month.
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ChiSandy. I myself am trying to avoid biophosphonates. I started Arimidex the end of September. I am trying Strontium along with calcium,mag and Mk7. I wasn't supposed to have a dexascan til next year but my PCP has me scheduled for one on the 19th. I don't think the Femara can progress the osteopenia over the course of 3 months before your next appointment. I included a link to one of the studies. I order mine from Amazon. My only issue is finding a time 2 hrs before or after I eat and separate it from the calcium and thyroid meds.
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Katy, Ducky and Slow...thanks so much for the hugs. Katy I had to get from under that rock....it was killing my back...lol. Oh boy...does that fire look inviting. I can picture myself all snuggled up in the chair drinking a nice cup of tea.
Proud...I finally got approval from the insurance company for the patches and I can pick them up tomorrow. I cannot believe I had to go through so much, and I have good insurance....go figure.
Going tonight after work to pick up something sexy from Victoria Secret's for my future niece-in-law. Just something for her to pack for their honeymoon. They are getting married this Friday. I love weddings and love...he is my husband's favorite nephew.
Rose...kick him to the curb....as the young people say. All that stress is too much for YOU.
Gaia...love your picture of you with fiancee. Best wishes to you both, and stay as happy as you are today....FOREVER!!!
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I had been diagnosed with osteopenia years ago and took Fosamax for a while, my density improved and then I stopped them as they are supposed to be used for only about 5 years and my bone density was fine then. When I went on the AL the bone density was cool so I upped my weight bearing exercises and it stayed the same during the 5 years
Did not know singular could cause bone loss as I have been on that for asthma for way long time.
shorfi, good that you are approved for the patch, I got approval for it but my copay was over the roof so did not fill it, I could still do so but trying not to. My back was feeling good till I went hiking around Asbury Park yesterday, dumbo here but it is happier with the pool and the heating pad
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Crazies
I just did a quick skim, will chime in more later, but just needed to say:
I AM NOT GOING ANYWHERE AND I'M DEFINITELY NOT LEAVING MY BELOVED CRAZY TOWN!
I was simply ( and have been for a while) toying with starting a ST IV CT because they seem to band together on IV threads. And that's an assumption on my part because I really have only checked out a few threads other than this one. This is definitely my home even if I become st 800!
Thing is for me- I really don't identify with it either. I'm simply interested in LIVING. And NO cancer is NOT a gift, but, IT DID WAKE ME UP to the fact that I have a lot of living to do.
Anyway
Rose- sounds like your choice is an important one. And I apologize for my unsolicited 5cents: WFT re that 'dream' he had. I am sure he is hurting and lashing out but that is truly low. It may not be easy, but you really made the best choice to support your well being.
OK more later ladies when I finish today's work.
xo
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OMG, I have been in the padded cell at the Crazy Town Tranquil Retreat for the last 24 hours. Everything has me freaked out. Doesn't help that my shoulder has been bothering me for the first time in over a month. (Definitely triggered by spreadsheets.) I have an appointment this week with my occupational therapist, and I think I'm going to have to talk to her about my anxiety, since it has been interfering with my self-care. I haven't been doing my exercises, to be honest. I didn't even eat or drink anything all day today. I don't know what we're going to do, but I can't go on this way.
Rosesrx, that guy is not worth your time (or anyone else's) and is a 5 star manipulator.
Marie, sorry you didn't get better news. Thank goodness they caught it early. Best wishes for Wednesday, we'll be waiting to hear from you when you are able to write again.
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(((Cubbie))) remember it takes great strength to ask for help. There is much that can be doneabout anxiety. A multitude of different approaches. I am certain you can get some help with it. In the meantime, I hope a hug helps. 💗
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Thanks, Katy. It helps just to tell somebody how I'm feeling, because I don't feel like I can tell people around me. You guys here in Crazy Town understand.
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I'm a tad skeptical of practitioners who push nutritional supplements (though to his credit Dr. Hoffman does warn against the worthless and/or dangerous ones), but I will ask my MO about strontium. There are also once-a-month-or-year shots like Prolia or infusions like Reclast that have fewer GI side effects, and there's evidence that the newer statins such as Crestor or atorvastatin can slow bone loss (estrogen-inhibitors can raise LDLs). Meanwhile, I'm definitely ditching my Tums, since my PPI (Dexilant) is suppressing the acid calcium carbonate needs to be absorbed--time to get some calcium citrate (generic Caltrate or Citracal) instead. I already take D3 and chelated magnesium (the latter to ward off nighttime leg & foot cramps).
Just read an article from the Mayo Clinic that strongly suggested strontium, though not yet approved for osteoporosis treatment in the US, appears to be very promising (currently in phase 2 trials); and that a semiannual injection of the monoclonal antibody denosumab may be the “magic bullet” for osteoporosis & osteopenia in cancer patients undergoing estrogen-suppression (phase 3 trials are about to conclude). NorthShore Kellogg Cancer Center, where I’m being treated, is Mayo Clinic-affiliated, so it’s possible that my MO might get me into a trial of one or both, or prescribe it off-label. It’s especially important to me because whatever aggravates my GERD can also trigger my asthma. Steroid-based asthma treatments (Advair, Symbicort, Nasacort or Nasonex) can not only accelerate osteopenia but also cause vocal cord atrophy--not exactly a good thing for a singer (nor a litigator, for that matter).
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OK Crazies.... need to say goodnight
Katy you make the most comforting places for everyone to land. Thank you. I think pumpkin bread is in the near future.
Shorfi did you make it to Katy's comforting lading spot? How are you? Has it been the pain?
Octo hope you are resting.
Marie I am sorry for 2nd dx and holding you close for a speedy recovery from mx this wednesday
Eggroll you have a lot to weigh in on re your decision.... breathing with you.
Slow hope you got my previous message : I am not leaving CT!
Lucy..... maybe gently invite the progressed ladies to visit us here. This is a good place to be and breathe.
Ducky did that real estate lady call you back?
Cubbie I am sorry you've had so much anxiety. no shame in that definitely speak with your OT and us and get the support and encouragement you need to get back on track with self care.
Chi I think the bisphosphonates are de riguer with the AI protocols. Although I believe one can pick and choose, yet if you are already having an osteo moment I see why you might want to jump on board sooner. There is also bone broth and comfrey leaf infusion....
Chevey where are you?
Rain That is so depressing re insurance and targeted therapies...for all and especially for my own navel gazing because herceptin will hopefully be my ongoing beast drone.... ugh. First week of Dec for BK CT meet up... will double back next week to make a date.
Italy looks like you had a blast. Great pictures and yay for dancing for 2 hours ( plus)
Tom I def want you to design a flower and dragonfly tiara for me!
OK ladies It's 9:20; do you know where your mind is? Hopefully in your heart.
Love you all.
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There is another thread like this one for stage for gals as Slow mentions in her info, gaia, I don't know the name of it right now, but I know I've seen it, I will go and look around for it and see if I can find it for you and make a linky.
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Gaia, also, how I wish that it went all the way to stage 800! You may be able to lift women up there, who might not be as enlightened and joyous as you are here, at the st.lV boards! Some woman who may have given up hope might hear something you say, and feel better! So for sure you should be a part of both!
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Thanks TomBoy- linky me to the thread....
I posted a bit at the beginning on the bone mets thread and a few others. It just became too draining for me to stay, at least for now.
Life is terminal, a statement I've co-opted, and I think it's a huge mistake for people to run down the hole that a 'diagnosis' based on a pattern is a death sentence and then just live life like they are dying. lots of people have pain- can I get a holler ladies? The mind needs to be managed
the language and 'stigma' of ST IV is, I believe, more damaging than the situation ( in many cases and up to a certain point of course) itself.
It just gets me angry.... and I suppose my own fear gets mixed in here, but Living each day in the face of whatever life brings is a choice... and yes I know it is a learned choice.
we are never too old to learn
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Gaia, you are such a good role model! Thank you! Now, let me say that I was just dethroned as resident medical badass at my work by a guy who has stage 4 testicular cancer. He just finished chemo, had part of a lung removed, and hikes timber sales all day. All with total humility. He drinks beer, sleeps when he needs to, and lives his life. I get that it's a different journey, and I am not trying to speak for anyone at all...just wanted to share a story of someone else quietly being a hero. Seems like death comes for us all, but not on any doctors timeline. Sorry if I've spoken out of turn. I know I'm not very wise....
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Christine- I always knew you wouldn't leave, but I understand a desire to connect with people in similar situations. As I'm sure Beppy would tell you, babysitting a thread is a time hog, in our case we are very lucky she's so generous to do it and keep up her magic spreadsheet. IMHO, I would take some time to really think that through if you are ready to take that on right now. Remember you have a wedding to plan. The one thing that worried me was, though every stage is welcome here in CT, on the St IV threads, many of us would not be allowed to visit you there, for many good reasons. (You can only post in St IV if you are IV yourself) It can be a fragile place, and those already stressed don't need a bunch of newly dxd crazies crashing the gates.
Follow your heart. It is stout and true.
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Jen- not agreeing with you that you aren't wise, just sayin' I value authenticity more. And you are the real deal. Hah! I saw it before you deleted it!
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Katy 😘but I'm intimidated by you guys...
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KATY again- I'm not leaving and it is unlikely that I will start another thread, for some of the very reasons you stated, and, VERY much because that is the issue with the ST IV threads- it's isolated. I don't feel that's healthy. Life is happening. It is sad and scary that at some point it goes to the point where you realize that it might not be happening forever.... but blah . anyway. EDITED to say: Katy- that's the 'problem ( or not) I don't connect with them- I may be in deep denial, but when I read those posts I just find it demoralizing. That's why this thread is so special- we are all here from a common root, but we each experience and share our individual joys and struggles- with an eye and heart to life and living- even while acknowledging pain and suffering are a part of all of it. I am always uplifted by each of your stories; struggles and triumphs alike.
I am officially past my bedtime. I love you all. and really I don't want to focus/ draw any more attention to a 'diagnosis' I have.
hugs and sweet dreams
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Gaia, I love your statement, life is terminal. None of us are getting out alive. And in the meantime, we live, laugh, love and enjoy every day. Never go away, your posts are always so thought provoking, and I take them to heart
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Christine, life isn’t happening “forever" for anyone! As Warren Zevon said (paraphrasing your statement), “Life’ll kill ya.” As long as you’re still here, you’re still here!
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Littleblue- here's a factoid for ya. As far as the "Crazy" dx, there is no staging. We are all equivalentally crazy. Crazy in all different ways. But equal. So 😍 No need to be skeered here!
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That's right Katy no 'staging' in Crazy land! i have no idea what LBF deleted, but I hope my rants didn't scare you away.....
Ok see i'm addicted to you ladies, should have put my head down an hour ago. I'm going to be dipping into Sula's time soon ( calling Sula)
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Oh and Slow my brother has a dog, a lab, and bamboo floors. Just saying
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I think I put myself in Crazy Town. I joined a survivors' dragon boat team last year and it has a been a wonderful experience but definite a two edged sword.
Brilliant to see so many ladies doing something so active and competitive, some of whom have been paddling for many years since their diagnosis, including some with metastatic disease. Therein lies the rub.
Some of the ladies who paddled last year were not fit this year. Several "early stagers" have had recurrence, progression or new primaries this year. One of my friends died yesterday.
I convinced myself I felt lumps iny neck in September. Got checked out: zilch.
Then I mentioned a cough that had been troubling me. I had a CT scan last Friday and get the results tomorrow.
So yesterday I took myself to see the movie "Miss You Already!"
I must be nuts!!!!!
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Morwenna- hello and I'm so sorry for your loss. I think it is one of my (and maybe all if ours but I speak only for myself) greatest challenges: to strike a balance between life as I knew it BC, and overexposing myself to sad things and scaring myself by inviting in problems and complications that don't exist yet. Since it is actually impossible for me to go back to who I was and how things were before, my only choice is to embrace what is in front of me. Sometimes I feel like I am flying a plane with night instruments. If something feels wrong in my gut, I step back and check myself. If it feels good, I move forward. I know I'm going to take some hits, feel some losses. Like you said, it's a double-edged sword. That's Crazytown.
🎪🎪🎪
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Gaia, your ranting didn't scare me! I was trying to say something and second guessed myself. Upshot was, a guy at work has stage 4 testicular cancer and has had half his lung removed, but. He hikes all day, drinks beer,goes to the bar, chases girls, lives his life, with total humility, never realizing how his presence lifts us all up. I was trying to draw a paralell, about how doctors don't hold the scissors over our lifeline. But then the moment passed and my social awkwardness reassert ed itself full force...
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