Does anybody really think...

I guess I'm having one of those dumb days. I watched some of my favorite people graduate from 6th grade yesterday and I have been very worried that I won't get to see both my girls graduate from anything. When, like everybody here, I want it all. I want graduations, I want grandkids, I want the future. Maybe even a date some time, but is that really possible with this vile disease?

I'm doing reasonably well, but I'm always waiting for the other shoe, you know?

Does anyone really think that we will get a handle on metastatic breast cancer? I mean a solid, reliable control over it or, God willing, a cure? Or should I get that out of my head and be grateful that I have survived a whole year past the median 2 years?

In a funk,
Joy

[Patty H]

I have been stage 4 for 2 or 3 years and never have never reached ned. A friend called me the other day and told me I could drawl ss disability because of. I don't know if she is right but I personaly don't think I will be here to drawl it at 62. I am 55 (almost) right now. Of course I still hope for a cure in the mean time. I don't think this is what you wanted to hear but it's how I feel. Patty H

Patty H. - If you are not earning more than $810 per month you can not collect Social Security Disability. Here is a link to see if you qualify for benefits. http://www.ssa.gov/

Joy - It does get better. I've had stage IV Inflammatory BC since January 2000. I had 4 1/2 years of remission. I relapsed this past fall, but am now in remission again. I went to school and earned a degree (with honors), vacationed, dated, cooked, cleaned, raised my kids and smelled the roses. It's okay to have a pity party once in a while, but please don't let it take over. You have to remember, as tough as this vile disease is, we are very lucky to be able to fight it and live with it. My grandmother never had a chance to fight thyroid cancer and what about all those people lost in the Tsunami - gone in minutes without a clue.

Joy and Patty

Please do not give up. Believe it or not, you have a lot to fight for. We must all pray for each other, and I will pray for both of you. You also have the right to be down at times, we are just human. Hang in there, and remember there are people out here that are praying and cheering you on.

MsLinda

Dear Joy-I have learned so much in these past five years since I was diagnosed. I have changed my thinking completely on many things. Life is such a precious gift and we are a special group that get to experience that knowledge first hand. There is no one or nothing that you will ever take for granted again. Every second is priceless.I am beginning to get used to living in such a way that I appreciate everything and everyone. Ultimately, this too is a gift from God. There was so much that I used to take for granted and not think to thank Him for all of my blessings. I'll tell you what works for me. Every day I attend Mass and receive Holy Communion. Words cannot express the peace that comes from receiving Jesus in the Blessed Sacrament.- the peace beyond all understanding. All of the black clouds are lifted and I am safe and joyful in the palm of God's Hand.Of course there will be sad moments, but Pray, Pray,Pray and you will find great comfort. You are so beautiful, Joy! Do the things you've always wanted to do. New cures are found everyday in this world and miracles happen all around us. I know that God is the Captain of my soul. When I get my chemo I ask Him to go down and be the Commander of the drug and direct it to where it needs to be. I have faith that He is doing that. Pray for strong Faith. Without it, where would we be in this battle? God is in complete control. That is a very liberating feeling. I figure it's a win-win situation. We stay here, enjoy our families, serve God here on His earth and spread love around- or we go to Heaven for eternity as a result of living our good life. We may have to endure some heartache and pain along the way, but it will all be worth it. God Bless You, Joy and remember, God loves each one of us as if they were the only one. Onward and Upward, Cathy

I also try to cherish the moments, but fear and hope for a future. I have a daughter with special needs and feel that I need to be around as long as possible for her. I also have an oncologist who never indicated that I could feel free of this even when I was not stage 4. I developed brain, lung, and liver mets a year ago after my diagnoses in 1998. I had herceptin and my check up last Thursday. I had a good discussion with my oncologist. Although he can't offer a cure, I felt he did give me the message that I should continue to hope. It made my day.
Best wishes to everyone out there who gets down from time to time. We need each other to pull us up when that happens.
Best,
Barbara H.

Hi there, I know where you are coming from. I started this in 1998 and I wasn't expected to get past 2000. I have been without disease so many times, and just when I think I can get some normality in my life something else pops up and I have to have treatment again. I just finished yet another round and I am without disease (NED: No Evidence of Disease) again, we tend to not use the word remission or cured. Like many this has been out journey for some time and this is the road we have to take, staying alive another day so we can get closer to a cure, I say cure this time, we all hate it and the only way I have managed to get through is with anti-depressants, so many people shun them but the one I am on also reveals symptoms of Fibromyalgia which is very painful, it is Prothieden 25mg of generic Dopthep) I have just increased it to double because I have been on so many drugs with my last treatment where I was burnt badly with radiation and I ended up on morphine, the bad burn was my own fault so don't be frightened by having radiation, I was on Xeloda and I thought if 500mg is good 1000mg is better, someone else was on 1000mg for radiation but obviously not the same as me, oh well at least I cremated the thing this time. So my advise is have a good repour with your GP and Onc, and if that doesn't seem possible then you need to shop around for professionals that you feel comfortable with because they will be with you for a lifetime. Also this site has been and is very valuable for the latest tested information and support. If I can servive this after haveng first off Pericarditus (inflammation of the sack which holds the heart, a bit like being wrapped in cling wrap and it shruck then a bad car radiator burn to my right arm and face, of course the mastectomy and lymphs were all removed on the other side, while I was having chemo, we unwrapped the bandage inserted the canular and then re dressed it after treatment, I had do dress it for a month. Then I fractured my left shoulder without knowing for 3 months so now I have to have that shoulder replaced so frozen and very painful and to top that off 2 years ago I had heart failure to 3 valves, no connection to BC or treatament, but treatment for Thyroid Disease that I also had pop up. So I swallow in excess of 35 tablets a day, including vitamins and supplements, so I tell everyone that I won't die of BC I will choke to death on my pills. Another thing I do is when someone asks me what I want for a present, I say a clock, they look at me stupid, then I explain you are buying me time. So I hope this has been a little helpful, you are not on your own, we get these feelings and there is always someone on this site to listen to you and help you get through this. My onc said on Tuesday, "boy you have a lot of blood tests" so I just said well I am aiming for the Guiness Book of Records", I have had enough radiation and cytoxic drugs to resink Hiroshima.

Love & iLyn

Originally posted by joy@Jun 4 2005, 12:43 PM
I guess I'm having one of those dumb days. I watched some of my favorite people graduate from 6th grade yesterday and I have been very worried that I won't get to see both my girls graduate from anything. When, like everybody here, I want it all. I want graduations, I want grandkids, I want the future. Maybe even a date some time, but is that really possible with this vile disease?

I'm doing reasonably well, but I'm always waiting for the other shoe, you know?

Does anyone really think that we will get a handle on metastatic breast cancer? I mean a solid, reliable control over it or, God willing, a cure? Or should I get that out of my head and be grateful that I have survived a whole year past the median 2 years?

In a funk,
Joy

[snapback]107082[/snapback]

Originally posted by joy@Jun 4 2005, 12:43 PM
I guess I'm having one of those dumb days. I watched some of my favorite people graduate from 6th grade yesterday and I have been very worried that I won't get to see both my girls graduate from anything. When, like everybody here, I want it all. I want graduations, I want grandkids, I want the future. Maybe even a date some time, but is that really possible with this vile disease?

I'm doing reasonably well, but I'm always waiting for the other shoe, you know?

Does anyone really think that we will get a handle on metastatic breast cancer? I mean a solid, reliable control over it or, God willing, a cure? Or should I get that out of my head and be grateful that I have survived a whole year past the median 2 years?

In a funk,
Joy

[snapback]107082[/snapback]

JOY ANYTIME U GET OUT OF BED IN THE MORNING BE HAPPY AND HOPEFUL..THERE IS ALL KIND OF THINGS GOING ON NOW TO GIVE HOPE TO ALL WOMEN ...DONT WORRY ABOUT THE FUTURE IT IS NOT PROMISED TO NO ONE ..LIVE EVERY DAY...AND HOPEFULLY YOU ,MY MOM,AND ALL THESE BRAVE LADYS HERE WILL LIVE A LONG AND FRUITFUL LIFE...AND NEVER GIVE UP HOPE..GOD BLESS YOU AND MAY HE KEEP ALL YOU LADYS WELL.....

Hello Joy

Like you i am very young with a small child, unlike you i am still stage 2 (knock wood), but i have fears every day that keep me awake at night, thats the very hard part of this disease.
If somebody said "Ok Nikki you have exactly 5 yrs left to live" i think i would find that easier as i could make plans and do what needs to be done, but like all of us i never know when my name will be pulled out of the hat and i go to meet my maker.....i guess it has always been that way, but now it is so much more a reality, at 33 i thought i had at least another 40 yrs left to do the mummy and grandma bit, now i am not so sure if that is gonna be the case so i try and enjoy my time with my son and make him realise he is my pride and joy and how much i love and adore him.

Joy, none of this is fair, i don't want to get on my soap box and start ranting about the injustices of this world, but i can tell you a story which helped me somewhat.
I went to a party a few months ago, a huge affair in London with lots of posh people and their flamboyant lifestyles (i was only there with a good freind who works in the media!!) i took a look around the room at all these people and i thought to my self, you know what i have in common with these people....we are all going to die, be it tommorow, next year or in 50 years, at some point all these people in this room siping champagne and living the high life are all going to die just like i am at some point.......before that i felt very singled out and that mortality had picked on me, i got angry and felt that life had thrown me a real c**p shot, i still do alot of the time, but just by realising that everyone dies no matter how pretty, rich or successful they are made me feel not so isolated or chosen, if you know what i mean.
A good freind of mine lost her 9 year old son to Neuroblastoma recently, that little boy changed my world, he never ever complained, he knew he was gonna die but he faced that with such dignity and without fear, my freind was the one panicking and frightened, he was just so peaceful and at at ease with it all, he said he was quite looking forward to playing with the angels in god's garden, i was stunned by his grace at a time like that....i felt so ashamed to be the one moaning and complaining about my ordeal after being in his company for an hour or so. I am sure he is there right now dancing with those angels.

Try to count the blessings of eveery day Joy, you are here now for your little girls, thats all any of us have is the right here and now, tommorow will take care of itself.

All my love to you
Nikki

Thank you everyone. I really apreciate your support and reminders, perspectives and prayers. You all have mine as well. i appreciate your story, Nikki, about the party. It is true, we are all terminal, aren't we?
thank you, again, everyone!
With love and gratitude,
Joy

You crack me up! And you inspire me, thank you!
Love, Joy

Try thinking of it this way. None of us can control life. It's way too big. Stuff happens. We can't control that, either. Half the time, we can't even control our own hearts or minds--even when we try. What we can control is our outlook and our attitude. You know, that trite "half empty/half full" stuff. Maybe trite but true, nonetheless.

One of the things I'm finding is that when you keep yourself focused on moving forward, you don't have time to think about forward movement--if that makes sense. You're just living your life rather than thinking about living it--or the reverse.

I just had to put one of my beloved dogs to sleep two weeks ago today. It almost did me in. (I don't have human kids so the 4-legged ones are it for me). Sure the same neurotransmitter (oxytocin) gets released when I look lovingly into their little sleeping faces as when other "parents" do the same w/ their sleeping children. At least similar. Anyway, I cried a lot for obvious reasons. But then I was able to "see" her in her favorite spot in my mind's eye and started talking to her. I told her that it was maybe better this way because she was still here with her family and I didn't have to yell at her about doing "bad pee pee, poo poo!" What changed wasn't reality, but my perception of it.

Go buy the DVD of the movie "What the Bleep Do We Know?" and follow that up by reading the book "The Living Energy Universe" for a waaaaay different perspective than the one that has us stressing over the sorts of things you described. Besides, changing those neuron patterns is probably the very best medicine for achieving a long and healthy life.

Who says God doesn't have a sense of humor! ;-)