Calling all TNs
Comments
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Bernie - this is what my friend said (don't think it's any different than what you've done. The other thing I remember is the creator of the group had to "invite" a person to be a member)
"Hi Kathy! Go to "Create Group". You may have to do a search to do it...and it will walk you through it. It has a box to check for "Secret" so everything stays private."
TIFJ - believe it or not, my tip is to go to the main branch of the NY library (you've seen it lots of times in TV shows, it has the lions on both sides of the main entrance). Absolutely beautiful building, and the ceilings are like getting a glimpse of the Sistene Chapel.
NavyMom - thanks for the heat info (not something my MO told me). I've spent this whole summer sweating like a pig!
Babs - thanks for some reassurance. I was just telling my PCP that I was concerned about how tired I am. He's gonna do some scans if the MO doesn't order them at my next visit, but I may hold off now that I hear I'm not the only one. (Cocker will love this, since Mom is still in the hospital, I was going to sneak off to the casino, but I'm to damn tired
To make the effort)
Lory - I may be the weird one, but I didn't find the question all that odd. When I was first dx'd I had a long conversation with a good friend.
My feeling was I'd of course fight the cancer as long as my mother was alive. After that, if it got to the point that fighting the cancer consumed all of my time and energy, and didn't leave much quality of life, I would stop. My friend is a nurse, and I wanted her to remind me it might be time to quit when the time came.
Luv & inmate - I hope you're new tx's are kicking ass, with no SE.
Hope - wondering how you're doing?
Hugs to everyone I missed.0 -
Lory I don't think it was a strange ? I have often wondered what I would do it I get past all this just to have it return. I don't know if I would want to keep it up. I have seen or talk to women that have been battling for years to just keep getting cut away at and I just don't know what I would do. My husband has told me that I would keep on doing it as long as it takes but that is easy for someone else to say.
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What a terribly sad day this was. Will always remember this.
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Just popping in to say hi to everyone. I'm trying to keep up with my reading here, just haven't had much energy to post....midway through my first round of carboplatin and gemzar and feeling pretty wiped out.
Tifj have a great time in ny, wish I could meet you while you're in town.....oh well
Hugs to all you lovely ladies!0 -
Cocker... I agree. Watched a show last night - How 102 Minutes Changed the World. It was like you were there... so very scary.
Peace, love and hugs to you all and hope everyone is ok'ish
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Round three of cytoxan/taxotere tomorrow. Anxious. Doing it to decrease 16-20% chance of recurrence down to 8-10% chance. So 3/4 the way through the nasty chemicals tomorrow. I like to hear from you TN's who are years out with no recurrence.
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11 years ago today I was stuck on Long Island after they canceled flights and closed the bridges (our corporate office is there). The air reeked of burning, the sky was frighteningly quiet, and people in shock, weeping. Many lost a piece of themselves that day...... so very sad. Reality hit home when I went to the hospital to donate blood, but the reserves were full because there were very few people who needed it. 8 days later I flew home and hugged my hubby so tight I thought he would burst! Yes, I often feel blessed today even with the scars and crappy SE's. I always try to love deeply, laugh often and live!! Some days are easier than others, but you all get that.
Hope all of you are coping well. Or as Tazzy said, ok'ish...... Xoxoxoxo0 -
Thank God 5owens.
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Remember these wise words:
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Tazzy - Thanks for the chuckle------I'm off to find a bottle. Jan
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Love it, Tazzy.
Hope, so glad to hear from you. Sending hugs your way.
Fern, 3 years out for me and living life. The fear of recurrence NEVER goes away but your strength eventually returns and enables you to deal with the "what ifs"a bit better.
9/11 tomorrow. Such sadness for the loss of life and the loss of innocence. Special hugs to those that experienced the horror up close. I can't even imagine it.
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Lory48 - I don't find the question odd at all. We all agree that the decisions we make are very personal and I believe that people who are cancer free are curious as to how we made the decisions we chose for ourselves. I know that before I was dx'd I had two friends with BC and I questioned them. I wanted to be prepared for "just in case" I was ever dx'd. After I was dx'd the choices they made were very influential on some of my decisions. I also don't believe these are stupid and insensitive people Jan.....people are afraid of cancer, there is an epidemic. People just want to know...maybe the way they phrase their questions, or their timing is off but stupid, I don't think so. Stupid people don't ask questions which is why they are stupid.
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Tazzy - I love it!
It was a beautiful day here in NC.
Wishing everyone a good tomorrow!0 -
Wrenwood - I didn't mean the people are stupid, just some of the questions come off as so insensitive. I'm sure it would also matter what the situation was at the moment. I can see that in a quiet one-on-one intimate heart-to-heart conversation, it could be appropriate. I was projecting some really inappropriate questions friends have asked me at very tender times. I'm so sorry for the misunderstanding.
Holding everyone in my heart, especially as the world marks yet another anniversary of 9/11.
Jan
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Thanks for the info on the FB group - only the administrator can allow people onto to the site.
My favourite dumbass comment. An aquaintance (and she knew what I had) said - "Bernie you look great, you have lost so much weight. what diet have you been on?" Her face - when i replied "Chemo"
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They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning,
We will remember them.0 -
Hope: Good to hear from you. Maybe that combo is wiping out those darn cancer cells as much as you. Take it easy, be good to yourself.
Tazzy: I saw that 102 Minutes that Changed the World too. Very powerful and moving... it really put you in the horror of the moment... with original video shot by New Yorkers that tragic morning. Even as far away as here, I will never forget the feeling of vulnerability, with our city towers... and Canada's decision to take in all those potentially threatening flights when US airspace closed.
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9/11 I will never forget that day. I was pregnant and in pure panic mode as soon as we crossed the 14th street bridge one of the passenger in the carpool said I think a plane just went down on the Pentagon. We made it to work and everyone was running from work saying we are under attack?!? The subway was shutdown and I had no way home. One of the ladies in my building asked where do you live I said VA and she said come on let's get moving to get HOME! We sped out of the city fast. I had never seen anything like it people were running from the Pentagon crossing 95 to get to Crystal City. Reflecting back it really makes me think of third world countries at war and the safety of the children and people in general. I pray no one has to go through something like that ever, but that would mean we live in a PERFECT WORLD. sigh.
I don't find questions odd. I answer to the best of my abilities. I find that people just don't know what to say, but they are concerned. They are coming from a place of love and we are just emotional because of what we are facing. I am like that myself when I see one of our sister facing more tx. I feel tongue tied and scared for them, but I don't want to pry and make them feel uncomfortable. So if I have ever said the WRONG thing on here please don't charge it to my confused heart.
Not on Facebook like that ladies, but enjoy!
XOXOXO!!
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I don't know, I'd really have to think twice about going through 5 months of ACT chemo again. I'd want some serious guarantees of success.
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How much is too much? Mind-altering drugs, I mean. I take Cymbalta to help with the panic attacks since the BC. I take Oxys for the pain created by my BMX. Lorepezam for those bursts of terror. Ambien CR to sleep.
How funny I never even knew about these (except the Oxys) before BC.
These drugs help me keep it together, so when the panic sneaks in, it's easier to squash down. But my dreams - every night is filled with horrendous nightmares. Guess that's what happens when you try to keep your subconscious empty during the day.
I am ok with all these drugs. I guess I should feel bad because I do sound like a junkie, but I don't care. My biggest fear is that one day I'll be without my drugs (natural disaster or something) and I'll fall apart. I already use up too many Oxys before they're due for refill, and I spend a few days in withdrawal before my appointment.
What do you all think? Too much? Or just doing what it takes to stay sane?
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minxie, I'm bipolar, I will do what ever it takes to stay sane. I drink wine in preference to a lot of the tablets on the market but saying that I cannot go without effexor and risperdal. This journey is hard for all of us in so many ways.
I talk to my GP and he supports me so much.
It is easy to say it gets easier. other people on here may be able to help and advise far better than me.
Don't ever forget we are all here for each other - not to judge - support
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Minxie,
Unfortunately there are no guarantees as we all know. And as for the drugs....better living thru chemistry is what I always say! I'm going to ask my onc to up my Lexipro as ever since my recurrence I've been pretty much a basket case.
I hope we all get thru this quickly and painlessly as possible. Namaste'.
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Had a really grumpy anxious day Sunday. Was not nice to my husband. I was worrying about a reoccurrence and I could not get the fear to subside.
I could not figure out why I was feeling so angry although I had a to do list a mile long and then it hit me that Sept 9th was the date of my last chemo in 2011 and it was the last date I would no longer have to deal with the oncologist that made some decisions that were not to my benefit. I thought I had let that anger go as I could not change the mistakes she made but I guess I hadn't. I also am coming up for my bilateral breast MRI and I know that I am getting anxious even though I feel everything is OK. Well f...ing cancer really keeps the anxiety returning......
11 years ago today my sister would have been on an AM plane to NYC but she got a call from the airline at 3AM that her flight was cancelled and "did she want to reschedule?". She chose not to. So sometimes a frustrating experience turns out to be a blessing.
Tomorrow she and I are going to meet in Charlotte, N.C. and drive to Asheville to see the house she is having built. I think it will be a wonderful trip. 5 days with my sister will be grand.
Luv and Inmate hope you are both doing OK.
Fighter...what a scary story
Minxie....you have gone through a lot. Meds can be our ally but only you know what is right for you. I still find I have a lot of anxiety that I try to eliminate through yoga and exercise but some days it is right up there.
wrsmithx2...gosh you too have been through so much. Yes better living through chemisty.
Happy Chappy!
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I've considered an antidepressant again at times as I have had a hard time focusing on things, particularly the past few months. I know I am in the high recurrence rate time period and it scares me. I took oxys throughout chemo for the muscle pains but at the end of chemo, my oncologist told me I was only getting one more refill and he wanted me to taper off, so I never got the last refill. Many times I wish I had, though, and I was pretty irritated at the time.
I'm not comfortable taking Ativan or valium, and I quit drinking 28 years ago so I just try to wear myself out with exercise. Riding bicycles helps my mood more than anything. Sunday my shoe clip broke so I'm walking this evening!
In memory of all those lost today.
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Thanks NavyMom - 3 years is GREAT with TN !
ROUND 3 - the RIGHT nurse put in an (almost) pain free IV - that was 3/4 of the battle for me today. My doc said to "scale it down" to not expect so much out of myself - that the tiredness/weariness and weak/sore leg muscles will probably escalate - my hemaglobin count was a bit low - he said THIS IS WHAT THESE DRUGS DO - "you need to lower your expectations of what you can do" . . . ha ha, my husband (sweet servant man that he is) said "I've been telling her that for days, maybe she will listen to you." I was GANGED UP ON! (ha ha ha ha) OK, so I'm going to "scale it back" and do less and quit when I'm tired. Today, already feeling the tired . . . so I will try to do nothing for the rest of the day. THANKS FOR ALL YOUR GOOD WISHES. KEEP THOSE "YEARS OUT AND CANCER FREE" stories coming my way.
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Hi everyone! Just checking in to say I'm doing fine on the clinical drug, so far. My labs were good last Friday and they won't be done again until a week from Friday. In the meantime, I'm keepin' on keepin' on! I spent a couple hours with my mom this afternoon and all I can say is, breast cancer is not as bad as dementia. She is not adjusting to her new place, which is nicer than her prior one. She has forgotten that she's been in an assisted living facility for the past two years and wants to go "home" or be with me 24/7, both of which are impossible. I scolded her today and told her she needed to stop being so cranky! It didn't work but it's about the only thing I haven't tried. After I left, I called my DD and made her promise to give me a "black pill" if I live long enough to get dementia. I guess in some ways she'll be better when she can no longer remember anything.
As for drugs, well, I am a walking chemical waste dump! Tons of drugs got me through chemo last summer, I am diabetic so I have a few for that, and now I have the trial drug and Prilosec added in the mix. So far I don't need any serious painkillers or antidepressants but I take a Restoril every night so I can sleep.
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Drugs, drugs, drugs! I too am bi-polar.. just got this diagnosis after completing chemo. I had been on celexa for depression before diagnosis after my mom past away, then switched to cymbalta. I will say that getting off of cymbalta is not so easy. I was titrated down to 20 mg and still am dealing with the dizziness and head "shocks". I am now on 300 mg of lamictal for the bi-polar, and still dealing with anxiety for my upcoming mammo.
I totally get everyones second guessing going through treatment again. I as most would want to hear positive outcomes, vs. being filled with more toxic chemicals. Don't get me wrong, I will have to weigh both with warrior mentality. Like I said fight till the end.
Michelle, glad to hear the trial is doing well with you thus far.
Fern, I am with you- both my onco and my DH ganged up on me before my last treament. I was a mess. lol
Fighter, scary indeed!! I was working on a military base when we went on full lockdown. Hummers with gun's locked and loaded at every intersection. My DH was active duty at the time and away for training. As soon as he was able to make it home (when the planes could fly) he then deployed. The tragedy of that day are still burned into my memory forever.
Bernie, I love a good glass or two of wine. It helps me to relax. I love the comments on my haircut when it first started growing back. They are pretty shocked when I say "this is growth after chemo, but thank you".
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Lory...I get that all the time too about my hair...what a great cut...never know what to say. I will use that line. Working through the end of this month then taking October off to start getting ready for my Recon in November. Going to use the month working on myself to get stronger again before a surgeon ravages my body again. Decided on the DIEP in New Orleans. The doctor thinks that the procedure may also help with the lymphedema too...that is the great part about choosing this one for me. Hope it does help. These arms are really susceptable to swelling if I just do minor activities.
Luv...so glad you are doing so well
Inmate--hoping you too are well
Maggie
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Hi Everyone!
Mags-glad to hear that diep might help with le. Did he say how it helps? I have been trying to decide if I am going to have reconstruction or not, and I thought it might make things worse, but if there is a chance of making things better I will definitly do it! I only met with a ps once and that was before I had my bmx, so I didn't know that I would have le issues.
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bak...the way it was explained to me was that right now the arm lymphs work fine and push the fluid up as they are supposed to but when they get to the chest it is like a brick wall without any tissue there. When tissue is replaced the fluid begins to flow again. Also the tissue they move has lymphs in it. If it does not help then the surgeon that I chose also does a lymph node transfer. They take lymphs from another part of the body and surgically attach them in line to be sure they work. I will PM you with more info bout the doc too
Maggie
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