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Processing Progression


jaminkw

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This is me three weeks after finding my lung cancer had progressed after six months off Avastin, a year and one month of total remission. I seem to be following my usual pattern of dealing with reality--from numbness to gradual acceptance of reality with most breakthroughs appearing as I wake from sleep. This morning just after 2 am. It was much easier to maintain my "word not allowed-eyed optomism" when I figured since my "no tumor" cancer was an odd-ball and had shown itself in an unexpected manner and that I could beat the odds.

I woke up this morning thinking of those 3-5 year stats with the realization that they could apply to me. I think I need to begin to get my affairs in order. It's not that I plan on dying anytime soon but I know survivors who have done this and continue to survive but with more peace of mind. And I have so much stuff to attend to! It's been a joke up until now when my husband insists that I better get a list of all computer accounts, passwords, etc. as he doesn't even turn a computer on and I have most of our life in it. Not funny anymore when I say "yeh, yeh, I'll get to it." And family photos. They are everywhere. I have a small house and it's hard to gather them all in one place but I need to work on that. I also have files of "stuff" I've saved including old writings, scraps of writings, poetry in various forms through to completion. My grandson is showing some propensity for writing and I want to organize them for him. He read some of mine but I decided to hold most for later when he said my poetry was "dark." He is a little dark himself at age 10. Our childhood traumas are different but both experienced multiple abandonments. It makes me cry right now to think of leaving him.

Enough for now. Hope my next post will be in just for fun!

Judy in Key West

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Sorry about the lack of sleep, Judy. I've been here long enough to recall several members posting in the middle of the night. Fortunatley this does pass, but that's not much consolation right now as you live through it. Just be sure you take your meds at a more appropriate time from now on, ya hear!?!?!

My affairs got all put in order almost 5 years ago. I felt too young to be worrying about all that 'stuff', but made myself do it anyway. Poor hubby had to do it ALL when his first wife died of cancer, so I didn't want him to have to do it all over again for me. You just wouldn't believe all I did. But it is done and I am still here. What a feeling! Now as to the paper 'stuff' I have all over ~ well, that's a whole different story. But all the biggies are taken care of. Reading stats does give us all pause, but I keep reminding myself as well as others that they are OLD and we have access to many new and improved treatments. When one fails us, there is another that wasn't available last year or the year before. There's Tracy, my niece, her doc is ready time and time again with the next best thing for her. It's been 3+ years for her.

So, friend, get moving and get things done. It will provide incentive AND bring the peace of mind that you won't have to do it when you are 85 and too senile to get it done!

Take care,

Kasey

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Kasey, you were the main person I had in mind when I said I knew people who did it and went on to survive with peace of mind. It's funny but my daughter had gotten me a book to guide you through the process even before I was dxd. Unfortunately, it got lost in her move. We just talked and she found it--so now no excuses.

I agree that postings in wee hours of the morning can tend to find us at low points. I really haven't shared much of the details of my progression but they have been weighing heavily on my mind. Fortunately, I was able to lay my concerns all out for Dr Tseng today and was greatly reassured. She said they tried to knock out my cancer with the first big chemos and they did and that I am in their 1% of advanced cancer patients who do so. She also added that I had a nice long run in remission even after I went off treatment, and that they are having really good results with Alimta without significant side-effects. She told me that I am still in a special category of patients. I feel so much better!

Judy in Key West

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Judy,

I had a meeting with an attorney to set my affairs in order after surgery and before any treatment. I didn't know what the future held, but I do know that everyone dies some day, whether it's cancer or something else. I felt it was very important to have things written down where the care of my child and division of my assets were concerned. Don't look at it as accepting death, look at it as taking care of loose ends. I compartmentalized it as "something that needs to be done" and I did it.

As for the news of progression, I think that's something that needs to be handled in small bites, don't try to swallow the whole thing at once. Reason with yourself with every bite, tell yourself that you are not a statistic, this is just a bump in the road, there are other treatments out there to try, etc. Make sure you get that spoonful of sugar with that bitter medicine. Remember to breathe, and take time to be kind to yourself. Try to keep your life gentle, peaceful and quiet with periodic trips into a bustling area so you can feel life thriving around you. Quiet times are good for the soul...

...and always remember that I'm in your corner!

xxoo,

Becky

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Lots of good advice Judy, from those who have been right there and "done that".

I also agree that none of us are promised any amount of time, cancer or no, and organizing our affairs is something that we should all do.

Its peace of mind...it's progress...it's something that you have total control over...at a time when it seems like very little is in your control.

You are one tough cookie, Judy. Allow yourself some moments to turn in and take care of YOU.

I'm keeping you in my prayers, friend.

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I'm sorry that you're having to face doing this, Judy (((HUG))) but I do think that now is probably the right time for you.

It is so hard for us having to deal with everything for my dad because he hadn't told us much and then left us a lot quicker than anyone anticipated and so we are left not really knowing if what we done, in the way of funeral arrangements, is what dad would have wanted.

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Thanks dear friends. My husband gave me strict orders today not to go into the doctor's office all "bubbly" acting like everything is great. He said I do that and he wants me to be real. I was. This place has helped me so much that way. When I'm talking to family and friends, he's right, I'm almost always upbeat and positive no matter how I really feel. With my friends here I can always let down and be me when I need to be. Thank you for that.

Judy in Key West

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Judy-

Joe and I shamefully finally got a will only after I was diagnosed. Nick was 14 and we had NEVER done the things we needed to do make sure that if something happened he would be taken care of. We were both ashamed of ourselves that only after a cancer diagnosis we did all this. I know so many people that make that a priority when they get married and have kids and here we were just plugging along oblivious to the fact that something could happen. I have to tell you, its such a relief now. If something happens to me, Joe and Nick will be taken care of monetarily (since he is a long distance trucker he would have to quit his job so I am actually insured for more than he is).

As far as the progression goes.....hey, you beat it once and there no reason you can't beat it again. Progression is the ugliest word but many times (like my last scan) we hear the word shrinkage down the road. So take your sleeping pills earlier because the middle of the night is such a dark time and place (no pun intended) and we tend to let our darkest feelings take over then. Remember, you are one tough cookie!!!

Hugs - Patti B.

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Judy Im sorry your having trouble sleeping.For me problems always seem their worst at nightime. So maybe getting out of bed and putting some of those thoughts on here will be of help. I hope so.Right after I was dxed,my wife and I made out a living will and a 5 wishes will(available from your doctor and they are free and do not take long to fill out.We even bought a plot at the cemetary and a stone. Hopefully we wont use any of these in the near future but I am glad we had it done so it is out of the way and a few less things our kids would have to deal with if something did happen. And it lets me put all that stuff aside and helps me to deal with the present more. Sending you a big cyber hug. Mike

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My wife and I had intended to do wills, medical directives, durable power of attorney, etc for years, but never got it done until I got diagnosed. It does give us the incentive to get that taken care of.

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I spent a few hours with an attorney before my lung surgery. It's not everything that needs to be done, but a big part of it. She was great in making the paperwork professional, but also with some counseling on things I would never have considered.

Judy - 25 plus years ago, when my Mom lost to the beast, the best she did was a short note to my Dad. Lost to me, beyond the hole she left, were the unidentified photos, and her writings. She was a wanna bee writer and I know of only one story I ever saw. I'm betting there were more and they went out with the rest of her personal items. I would love to have those more than the couple of cookbooks and small appliances I inherited.

I think you better plan to stick around for that grandson of yours - he is moving into those difficult years and can use your poetry and humor.

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It's a new day and although the weather is overcast, I'm feeling brighter. It did help me to come here and write because I hadn't really cried much since this setback. I think the writing prompted the tears and the tears helped clear my mind. And all your good wishes are the best.

I will say, my husband and I did Wills (our second since our marriage) before I was dx'd. It's all the stuff from the business and my personal photos and papers that need tending to. My husband and I started a business in the nineties and I've always done the paperwork. I did organize a lot of that on my recent chemo break. I'll be traveling alot and may take my personal papers with me to work on when I'm sitting in RV parks and fields lol. The photos will have to wait til I get home in August. I have plenty of time for them. See, positive thinking.

Thanks ts for the tip about the writing. I've always been a wanna bee writer too and even worked for a newspaper for awhile. I've kept articles and features stories I think Dominick will appreciate. If I don't do it, they'll just get trashed.

Judy in Key West

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Hey Judy,

Sorry I'm late in responding. This brought up a lot of issues with my Mom, so I needed to get a grip first. Mom had always told me if anything happens get the big brown folder out of my dresser, over and over again for years. Well when something finally did happen I got the big brown folder and low and behold there on the front is a "Dana to do list" with instructions on when to do what and how to do it. I just sat and laughed and cried. Then a couple of months later I needed to find my birth certificate, Mom kept track of all that stuff, I didn't know where to start looking. I thought okay Mom probably would have stuck it in the desk, so I go in the office to tackle the desk. I open the drawer with the folders and low and behold is a big folder with another note to me, "Dana this is ALL YOU IMPORTANT PAPERS" "DON"T LOSE THIS!!!", along with a list of all the important papers contained inside. Once again laughing and crying at the same time. When I got my cancer dx, the cemetary had called my Mom just to check on some things concerning her funeral arangements and touch base so to speak, they did that every now and again, so Mom had all her funeral arangements up to date. She actually had two plots so she had them put one in my name. I thought it was creepy at the time, but now it's a comfort. I was amazed that my Mom was still taking care of me from heaven! Of course my biggest blessing was the tape my friend made for me of my Mom's voice. I know this doesn't really make any sense, but in a way we are lucky at least we are getting a little bit of a heads up, which again doesn't make sense, as one member was told we could get hit by a bus tomorrow! But at least we can take the time now to think about these things, to bring comfort to our loved ones.

Dana

P.S. Don't forget the living wills! That was a life saver to me in the hospital during Mom's last day!

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Gene and I were the same, we talked about getting wills and health care power of attorneys completed but didn't do a thing until his diagnosis. Then we BOTH did because like I told him, he may be the one with lung cancer but he could still out live me. It does give you a peace of mind though. Now we can focus on living!

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Judy,

Forgive the lateness of this reply to your posting. Things have been a bit hectic around here. Preparing for the arrival of our son and grandson from Florida.

Middle-of-the-night episodes are the story of my life the last few years.

As for progression, we have been there more than once. As you can tell from some of the postings, Bill's oncologist doesn't give up easily, either. Glad to see yours is proactive, as well.

I believe that being positive has its advantages, but to be honest, it's not all that easy when reports have us on tenterhooks.

There is anxiety continually the back burner, and it's good to take it to the forefront and look it over and steep oneself in it, every now and again. It helps to "lighten the air," and give us a fuller view.

Reality is important, I know that. Sometimes, I think Bill knows it, but at other times, not so much.

On one of Bill's progressions, he was put on Alimta and stayed on it for the better part of a year with little side effects. It was one of the easier chemos for him.

Keeping you in my daily thoughts and prayers.

Barbara

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I believe that being positive has its advantages, but to be honest, it's not all that easy when reports have us on tenterhooks.

There is anxiety continually the back burner, and it's good to take it to the forefront and look it over and steep oneself in it, every now and again. It helps to "lighten the air," and give us a fuller view.

Reality is important, I know that. Sometimes, I think Bill knows it, but at other times, not so much.

Barbara, I know this is a long quote but you are so often "right on" in your perceptions and choice of words. I do feel better after the melt-down. I really went into shock mode with this last scan and then on down into negativism. My grandson brought up my cancer last night and we were able to talk about it calmly. He's only ten but has way too much experience with loved ones and this dreaded disease. I said maybe I'd be on chemo the rest of my life but that was o.k., and his reply was "it's better than dying." I said, "you've got it baby." Much as I hate the excess weight, I think it helps him that I'm plump and healthy looking.

Judy in Key West

Thanks Barb, Judy in Key West

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Hey Judy. I am a bit late in responding here. I just wanted to say that of course you are a special kind of patient. We have all known that here for a very long time.

Yes please get your affairs in order and attain that piece of mind. We all need to do that.

And we all have our ups and downs in dealing with this darn disease. And honest postings like yours help us all. But continued hope is what keeps us all going. And of course the support of all the very wise and caring people here.

Take care my friend

Sandra

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((((Judy))))

I haven't walked this path so can't give you any wisdom--just a hug.

That hug will be here anytime you need it. It is here for you when you want to cry and when you want to laugh. It will be here when you are frightened and when you have good news to celebrate.

It is all I have to offer, but it is all yours.

((((Judy))))

Susan

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