Facing the Future
Comments
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It depends on who it is. If I don't want to hurt their feelings, then I just thank them for the information and tell them I will think it over. Many people, including my family, seem to think that if we look long and hard enough we will find a cure. My brother wanted me to try Issels in California. I told him I didn't want to spend what time I have left and my limited money on something like that. If it is someone else, I just say UM, and turn away. For this reason I have not told anyone outside family and very few friends.
Happy Easter everyone! The candy eating has already begun in earnest.
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I get this a lot too. Especially since I am only on Herceptin and have made a decision not to do chemo again. I have worked up a heartfelt reply that goes something like this:
"I really appreciate your care and concern. After long and careful consideration with my oncologist, radiologist and surgeon, I have chosen a treatment path that needs my full focus, and I promised myself and my physicians not to stray from that path. Again, thank you for thinking of me."
My reply is truthful and so far nobody seems insulted or rejected. I was getting daily advice on who to see, where to go, what drugs to take, what treatments, even what God to pray to. I just couldn't take it anymore. Maybe I feel especially vulnerable since I have rejected chemo at this point.
Carol
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whoopsie, I have been in the exact position you are in, believe it or not multiple primaries is not the same as stage 4 mets, is actually a better position, scary yes , but you have a long way to go before you can be defeated, PM me if you want to connect with another 3 time survivor, I am sure we are not alone here
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Good reply Carol-think I'll memorise it...
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My father has been pushing a naturapath since the return of my cancer. He knows someone who knows someone who's daughter is cured.... when they told her they couldn't do anything for her. He keeps telling me the story and I told him if her dx was the same as mine and it was that bad,, and now she's cured that she'd be on TV with her doctor etc. That seemed to shut him up. I agree that there are foods that maybe we should stay away from... He says she eliminated man made sugar. But when my weight was down I was told to eat high calorie foods,, and that meant sugar. I've gained back about 10 lbs. I had to outweigh the bad with the good. I think everyone just wants to be the one who saved our lives. The hero's. If they walk a mile in our shoes they wouldn't be pushing these things at us.
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The other day on the Today show, it was focused on Farah Fawcett. She was doing a 'cure' over in Germany. Not approved in the US. She was back in the US from complications of her treatment. Dr. Nancy Snyderman quote "This treatment just dose't work", (shark cartiledge and something else I can't remember) and that cancer patients desperately try them. They usualy cost big $$.
I have very few that have approached me. One friend sent a cancer diet (guess what? It was similar to my own!).
If all that it took to cure cancer was some magic juice, I am sure that the media would jump on it.
Carol, I love your reply.
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Hey all----been away from the puter a lot these days & may have to continue....having pain in my left hip to my knee & can't get comfortable to sit & type for long! I THINK (hope) it is a past injury & will have to give it some time......AND I DID TALK TO MY ONC so it's just gonna be wait & see for a bit!
I, too, have been offered assorted alternative tx's from many ppl--one woman from my church who's name I don't even know called me suggesting a supplement (lots of shark cartilage & omega 3's) that supposedly cured her boss's dd! Dh checked it out & said it sure couldn't hurt & would be good for anyone's health-so I bought some.
Now she probably thinks it cured me cuz right after I started it I quit my tx, took a break & then changed tx so she's watched my hair come back & I have returned to appearing "normal" LOL
Whatchagonnado?????? HUGS Be well & stay strong
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Hey ladies,
I haven't been on much lately either...Welcome Whoopsie, sorry you have to be here..
As far as the "pushers" are concerned, I don't get too much of that, I think I have one of those----"Don't even try it" faces....I have never been able to hide my real feelings much, not exactly the poker face...LOL.....
Had a pretty decent Easter, as far as feeling good goes..Actually today I woke up not feeling stiff and sore, for the first time in a long time...I would just like to have a few weeks of feeling like the old me again...It's amazing how we adapt to the new way of life with the aches and pains, the stiffness, and the overall yucky feeling all of the time...It kind of scares me though, I always hear of people having and "up" time right before they come crashing down , and ending up in the hospital, but heck I'll take it anyway....
Hope everyone had a nice holiday..Looking forward to some warm weather soon...it is suppose to be chilly all week here..Ugh..We're having a pool put in,they started digging last Friday, the yard is a mess, the dog is coming in with muddy paws, leaving prints all over the dark hardwoods, the windows look like someone sprayed them with muck, and I'm just not caring or worrying about anything this time around..Amazing how the things that in the past would have sent me into a sweat and sleepless nights, just doesn't bother me anymore....I just don't seem to fret over every detail anymore either..Funny how that happens...hhhmmm maybe it's the better drugs I have now LOL...I'll have to post some pics when it is done, but I don't know how...Maybe hubby or son will help me with that..
Saint I think that's my new attitude too ---"whatsagonnado????".....not a damn thing about it.
Hugs all KLynn xoxo
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KLynn-I never thought I'd say it--but you CAN stop the spin cycle & just say WTF........LOL I have found I can let things go that NEVER would have gotten past me b4! Too bad it took bc mets to teach me a little patience & wisdom...lol
I have to add a comment I missed b4: Whoopsie----I hate that you have a 3rd cancer. I do not make light of it, but it is NOT the same as mets.......you CAN be NED again, hon. Given the choice I would rather 3 primary cancers than 3 mets sites--(here we go again finding the "good" in a cancer dx! sheesh)-----As long as they do NOT tell you that your prognosis is "terminal" ya just gotta keep on truckin, girl! It sux the big wazoo for sure, but you have every reason to remain hopeful cuz your sucky tx has a better possible result than the unending chemo of mets! Kick that beast to the curb AGAIN!
HUGS Be well & stay strong
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Klynn,, the comment you quoted about doing good right before it going bad is what I was thinking of tonight. I've felt like total BS,, for about 5 months. Very few good days. Then a few weeks ago I had my 5th taxotere,, and prepared for the bone ache three days later as ususal,, but it wasn't as bad. Then ususally the next week I feel kinda crappy,, but I was actually feeling pretty chipper. Went out to dinner with hubby for wings. Remodeled our powder room, I installed a glass bowl sink,, re routed the plumbing,, new faucet,, Got up on a ladder and wall papered and painted the room, Went shopping for new light fixture decorative things. I felt great. Yesterday i went with my dad to the casino,(which I hate)... but wanted to spend some time with him as he's been buggin me. Anyway,,, today I'm down and out with aches and pains and on percocets all day. Dozed off an hour after getting up and down stairs. Tonight I wondered if thats whats happening. I had my last good phase and now it will be down hill.?? My oncologist must be on holidays because they have me a week late with my next treatment. I've noticed my left eye tears up lately when I lay on my side and today it looked puffy under my eye. Now I'm all paniced again that something is moving or growing in my head. I wish this disease would give up because frankly I feel like giving up. Sorry,,, had to rant and rave. I feel better now. Maybe its the pain killer. lol
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WOW Lynn...funny you should mention the eye...I have had my LEFT eye watering all day, every day for about 2 1/2 months now...It drives me crazy..I thought at first it was the really cold weather, haven't been wearing my contacts because of it, wearing glasses all the time now...Sooo of course all the "ugly " thoughts are going through my head, but I refuse to mention every little thing to my doc, knowing he will send me for more scans...ugghh so tired of going for them..Anyway, I'm schedule at the end of the month for reg. scans..I decided to go to the eye doc and have them look around..I mentioned my drugs, mentioned the irritating watery eye, of course she gave me the "just in case " look..She did the reg exam, said I had a ton of make up floating in that eye, WHY that eye and not the other too????
She offered me an OPTOMAP scan exam for 40 dollars..I thought not a bad idea, they can see behind the eye, and the entire eyeball, blood vessels and all...Turns out my eyeballs are in great shape..no growths, no unusual coloring, nothing..hmmm..Man was I happy...I was thinking it could me more this time...She fitted me for new contacts, I have been wearing them since last week and go to see her tomorrow..The watering has been less and less all week..Can't figure it out, I thought maybe the contacts have been protecting my eyes and when I stopped wearing them it was like not having a coat on...But why one eye.??? I also take a lot of pain meds for the aches and pains, never thought it could be that..but maybe... Interested to see what she says tomorrow.. Ohhh the crap we go through, nothing seems easy anymore..Seems like every part of the body has a change of some kind..
Hope you are feeling better soon...I think it is the warmer weather that gives that spark of energy..
Hugs KLynn
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Just wanted to say that we are experiening computer problems and will not be able to get into
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Hugs all---I agree about feeling good before "the next fall" BUT I also know that each time I have been knocked down I got up! So I suggest focusing on those times when you felt so good you could DO stuff & believe that another will follow each TKO....so far they have for me! I'd like to believe it will continue---for all of us!
Be well & stay strong
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I have been thinking...
I am sitting here with my hair, just starting to look non-chemo girlish. I feel pretty damn good. I just don't know if I want to do another chemo again. I am on Herceptin now and zometa. I just keep thinking, do I really want to keep doing this dance with chemo?
What makes us belly up to the bar for treatments that give us 6-18 months, then onto the next one?
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LIFE!!!!!!
That & the hope of another kinder tx that will let our hair grow yet AGAIN!!!!!
HUGS!!!!
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awwww Fitz,
I'm sorry that you have to lose your hair again..That s**ks... I haven't had to lose my hair YET for the second time, and I"m not sure I could do it again...It just becomes too over whelming some days...Big Hugs from me to you ...It's not just the hair, it's the weight, it's the hot flashes, it's the clothes not fitting right, it's the "stay out of the sun" thing, it's the problems with the sex, it's the constipation, the diarrhea, and sleeplessness, the oversleeping, it's enough already...It just seems like we lose so much more than "the hair"...Sorry ranting again...
Fitz..hope you figure out what is best for you ...Hugs KLynn
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back in teh ER this morning. AHHHHHHH THIS SUCKS>>>>>>>
Worst of all, not being able to breathe and watching all my kids standing around staring at me. That's what makes me cry more then anything. They now accept this as a prt of our new normal.
Anyway, even tho I was on the verge of passing out, I still didn't feel like it was the end...only just one more crummy bump in the road.
I kept praying for relief, but it went on for awhile before they could control it. I got morphine and ativan to calm me down. The morphone was now a good feeling, but the ativan worked and after they drained my lung and gave me a vicodin I slept all afternoon until dinnertime.
So girls, pray for me, I have no idea why this is happening or for how long it will go before it turns a corner agaon.....randie
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Randie,
Hi, it is me again. Since I have had a number of pleural effusions I know how horrible what you are going through can be. There is not much worse than not being able to breathe. I don't understand why they just keep draining your fluid. Sooner or later you will end up with an infection from all those needle draws. (at least that is what my pulmo said). Do you have a pulmonologist? If not, I suggest you get one NOW. He can offer you other, more permanent solutions. I had the drain first, and then the talc procedure. Now, I get no fluid accumulation and I am doing great. I am on oxygen, but in general, lead a normal life because of the kind of eqpt they have out today.
big hug and prayers for you Randie.
Carol
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Randie-pleas ask for talc pleuredosis asap. It's such a straightforward procedure and brings immediate relief. I had one in Nov 2007, and so far haven't needed any more fluid drained.So sorry to hear how bad you're feeling at the moment...hugs,xx
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Oh Klyn, I am not doing another treatment. Just thinking about if I have to do one again.
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Crap Fitz...Don't do that to me..I thought I missed something here over the past weeks or so...I thought my memory was pretty good, until now.....Well I still don't think you should EVER lose your hair again anyway...LOL.....
Randie, sorry to here about the trip back to the er....Prayers coming your way...I hope they can get this under control...Su*Ks that you are having such a hard time, I haven't had that part yet, even with the lung mets I have been okay with the breathing...My mother was on oxygen for awhile with her b/c, but didn't have fluid build up..they never really knew why, did all the blood gases tests, they were low but still not the reason.
Hugs all KLynn.
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Hugs Randie!
Sorry for your breathing issues. It is one of my worst fears & I can't begin to imagine how you are getting thru it! I think it is GOOD that your kids accept this as "normal." It means you are a close family. They would be terrified if you sheltered them from it & then happened to witness it. It still sux the big wazoo, tho...wish we didn't have to teach our kids THESE lessons!
I like you attitude---waiting for it to 'turn the corner' is the best way to think of it. I'm praying hard that that corner is RIGHT here----just a few more steps & a new Normal Street!
Hugs--be well & stay strong
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Thinking of you Randie and hoping you can breath easier soon. Take any meds they give you. Don't roll around suffering. Huggs
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I am so sorry, Lyn. This does not seem fair at all. I am not terminal yet but I face the fact that I may be progressing that way. Lyn, I think it is quite understandable how you feel. It's good to vent and let your feelings out in the open. I find it cathartic. I don't know what I can say but I do give you a big hug. I wish I could take away your pain.
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Wow, I hadn't realized that this thread was so active, and I hadn't checked in a few days. I guess I forgot to add it to my favorites.
RanD I'm so sorry to hear of your breathing issues. There's a lot to fear with mets, but breathing has got to be up at the top of the panic scale. I've lost the phrenic nerve (operates my right diaphragm) and so I've lost most of my right lung. No one knows for sure, but pulmonologist thinks it could have killed the nerve when I first had a lymph node pressing on it - before mets was even dx. It helps with the panic to know WHY I can't breathe, but still sucks. It took a carciac catheterization to diagnose the problem, because I failed the stress test, since I couldn't breathe. Heart's fine, lung doesn't work for shit. I don't even have lung mets, yet, but I know the feeling of being unable to inflate your lung.
Fitz, I'm on zometa, too, because of the recently dx bone mets, along with radiation to spine and ribs. But I'm thinking that the chemo break is soon over. The first week of June I get everything scanned, including the brain. I'm going to be a mess.
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Pleural effusions are one subject that I can speak about. There is shortness of breath. When you walk, you feel like you are wading in the ocean. It is so hard to do the littlest of things. When I was diagnosed with this, I was introduced to a thoracic surgeon. He asked when I woiuld want the treatment, and I said "yesterday". He said to return by 4:00 PM. I had just enough time to do two loads of laundry and pack my bag. My property manager drove me back to the hospital and my friend followed by public transportion (cant get her wheelchair into a car). The doctor then had a chest tube inserted into my lung. This is the brutal part.... and then thy let it drain for a week. Then he did a push of bleomycin which caused the two layers to irritate and then cling together like saran wrap. I have to admit the bleomycin was a very strong pressure that lasted for about 5 minutes.
Anyhoooo The whole procedure was repeated on the other lung and I went home, breathing normally.
I actually had this done again on one side. But have been told that this is rare. If you have a choice, talc does not hurt.
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Thanks all...I guess all of us have some fear or other. I ended up talking to the onc today and she is sending me to the pulmologist for a pluerodisis "chat.
All my friends at the ER said that they think thats the route to go and its pretty safe...sigh....don't you just wish for the days when all you had to worry about was could you put off laundry for one more day....
randie
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I know RanD. I used to worry about taking a Tylenol and now scarf down a handful of pills no problem. As for laundry, I make sure I have enough clothes for 2 weeks and do laundry once a week. But if it gets postponed, I have enough clothes. However, we do find that the dishes must be done regularly as there is only a finite number of those.
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RanD---big hugs! I guess my wish for the "old days" slowly evaporated as the new normal took over. Sometimes I still hate that life is not as simple, but mostly I'm glad that it is better than my lowest (spending 80% of last winter in bed!)
Analemma! We are here for YOU---Always & forever! I think you are much stronger than you think (aren't we all?) but I know exactly how you feel--positive vibes coming at ya--I keep a candle in my church burning 24/7.......
Dream------big hugs----don't know what I would do without your friendship!!!!!!
HUGS ALL--be well & stay strong
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saint: new normals may be better then old normals when it comes to family....I think we end up appreciating them even more, or in some cases, less...lol
candles for all of us 24/7
randie
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