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Posts posted by SDianneB
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Thanks so much for these updates. Big hugs to you and Addie.
Di
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Ann, this is terrific! I can't tell you how many times I hope that people here (and elsewhere!) can truly move on and make a new life for themselves, and you're doing just that. Kudos to you, and many blessings and good wishes to the two of you.
Di
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Addie -- can you tell that we miss ya? Yep, we do.
Special long distance hugs and lots of prayers coming your way from me.
Di
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Not at all what I wanted to read here today ...
Pat & Family -- my heartfelt sorrow at your loss. I never cease to be amazed at the wonderful people who find each other in this big world and make lives together, and then share themselves in such a way as you have.
May God bless you during this sad time, and thereafter.
Di
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The day the doc first told me I had SCLC, I thought it was all over. Time to say all my goodbyes, put my affairs in order, and just wait. I set a goal for myself -- to maximize my survival. I feel like I've done that, and now I'm looking at my 2nd New Year's Eve after diagnosis. I never thought it would happen.
Lots of good docs and meds and trials played a huge part, as did the many wonderful people here, and those in my off-computer life.
As I did a year ago, I will thank God for another year of life, and be grateful for any more days that He gives me.
May God bless you all, and keep your New Year safe and happy.
Di
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Carleen, I'm so sorry things are going so rotten for the two of you. You're in my prayers.
Di
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Keith, I'm with you on the work thing -- getting myself to work every day for all this time, even though a real challenge at times, has been way at the top of the list for me. Maybe since you work there someone will cut you a break and get you some results? Maybe, maybe ... we'll hope so.
Hope things get better for you and that you get some much deserved help.
My best wishes to the both of you.
Di
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Pat, you and Brian remain in my prayers.
Di
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From when I was first diagnosed (Memorial Day, 2004), all the scans would report some degenerative changes in my spine, and a place at the top of one leg. As of about last April/May, some hotshot Radiologist decided that those places were "consistent with metastasis," so that's what it became to the doctor filling in for my PCP! All the scan reports after that showed the same things -- same place, same size, etc. Finally, the Oncologist wrote in BIG letters to the Radiologist (one of theirs at their imaging center) - to please check out past scans, and show changes in those spots so she could better treat her patient.
Well, the answer came back - DUH. Sowwy.
Since then, they just mention the places, but don't call them metastasis now. Finally.
It's frustrating when you have so many places to go for treatment, so many docs, Radiologists, etc. I'd go with the doc(s) you trust most. My PCP even agrees that once you mention "cancer" in an x-ray report, just about anything they see from that point on is "consistent with metastatis."
My best wishes to you.
Di
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Just makes ya want to kick something - or someone! - doesn't it.
I hate you're having to go through all this, but "stuff" just has a way of putting crimps in our plans much of the time.
Just think -- in mid-January while people are frozen into their homes and having the after-holiday doldrums, that you've already had your bad stuff!
Seriously though, I hope you can battle all this back soon, so you can go find the contractor and kick him in the shins. Bah humbug.
Take care, dear one.
Di
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If I may, I'm going to sit on the fence somewhat with this one. I see both sides of it, but would come down on the side that says it is most defininitely NOT a gift.
At best, I can just say that what I'm learning about myself through this disease is invaluable. But then again, things can go bad very quickly, and all you will place value on is being able to breathe.
Life is the gift, IMO. Many of us are fighting to keep our lives right now, and to have them be relatively normal, pain free, easy days as much as we can. Cancer is my enemy. It won't ever be something I will accept or welcome into my life, it's just there, and I'm trying to get rid of it or stabilize it. Gifts? Yes -- they come in the form of sweet cards and words and letters and phone calls and hugs and all sorts of things.
I get it when I hear someone like Lance Armstrong or someone appearing on Oprah when they say that the best thing that happened to them was the cancer. I'm sure they mean being CURED from the cancer. I'm not even close to that yet. Maybe my perspective on it will change the longer I survive. I have no idea.
Di
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I've been unable to get here for a week or so, and came back to read this. I'm so very sorry for your loss. Your mom was a special person to many of us. God bless you through these trying times.
Di
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That shoe! If it ever really dropped, as many times as I think it's about to, I'd be carpeted in shoes by now.
The trial is going well, actually. As usual, I don't have the usual side effects as most people. What they report most commonly is "mild nausea," and that, for me, just means I burp a lot in the afternoons! (Be glad you're not around me then, and grateful it's just the burps! My cat already thinks I'm nuts.)
During a few infusions, I felt that "sleeping leg" thing in my left leg, very mild, and then haven't noticed it at all this week. (I'm in the 3rd week of the trial - had 1 week of MWF infusions, then a week off, and this week of MWF infusions - will see doc next week.)
I need to learn how to just STOP it! I'll get a new ache or pain, and then wonder, "is this it?" Well, no, it's just a little ache here and there -- not unusual by now. I did take 2 mild pain pills last weekend because of the spot in my back that would bother me at night when I'd sleep in the same position too long. I must get over this too, and learn to take and appreciate pain meds when I need them!
But, back to "normal" this week, whatever that is. Other than the burpies every day (I'm taking Protonix and it helps a LOT with this) I'm in good shape.
A funny -- I go in Monday for the infusion, they get me all set up and going on the IV, I'm sleeping, and I wake up and know something just isn't right. In a few seconds, I figured out what -- the tubing had sprung a leak, and I was soaking wet! We won't know that day how much of the meds went into me vs. on me. Then, when they got me a hospital gown to put on and I sat down to finish the infusion, the nurse spilled the cup of water sitting next to me! Ack! I finally made it out of there in a hospital gown, dry, but a little cold, but none the worse for wear. We all had a good laugh over it all I told them I was going to file a complaint yesterday when I didn't get my free bath - ha!
Hope everyone is hanging in there. I was "blocked" from here by my ISP for a while, but Rick finally helped get that fixed, so all is back the way it was.
Di
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Hey Barbara - welcome! I moved to Nashville from San Antonio in 1984. I sure do miss that beautiful city, and the entire beautiful state of Texas!
Sorry you have to be here, but glad you found this place. We're all fighting the same battle in one way or another. The more scrappy Texans, the better!
Di
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Fay, sweetie, it's always "your turn" here. That's why we aren't the contractors or the docs or whoever steps on your toe in a particular day. We love and care about you, from a distance even, because we share so much in common with you.
Life happens while we're fighting our cancer. I've had to deal with things that I felt took up too much of my precious time and energy too, but it all comes and goes. It's part of life. To be sure, a life that turned out differently than we wanted it to, but ... you know the rest.
I'll hope and pray for fortitude and the strength to get through this and any hard times that come to you.
Di
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Yay!! This is what I most wanted to hear!! I'm so glad you're free from all that institutional bondage. Ick. I betcha there are 2 buppies and a grandbuppy who are glad to see ya! Have they licked off a layer or 2 of skin already? Ha!
Hugs to you, friend. Here's to some rest and more rehab for you until you get back to being your old sweet self. (Sweet? Well, you know what I mean!!)
Lotsa hugs and prayers still coming your way.
Di
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That appears to be one of those little secrets kept by many radiation therapists. When I was considering PCI, my primary care physician specifically had me ask about that, and said that if the answers were vague, to keep pushing, and call him for help if I needed it.
Fortunately, I was with a good group of people and the Rad. Onc. I had was wonderful. He pointed out the pros and cons and helped me through the decision making process. Much of it depends on technique too -- having someone doing a good setup for you, so as not to irradiate too much or not enough.
Going into this, I knew I was in for many things that would help keep me alive, but would also not keep me living in the same way I always had. At best, it's a crap shoot given that so many of us are outliving the odds and the naysayers, but sometimes the cost begins to outweigh the benefits.
My best wishes to you and your wife.
Di
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Ditto what Katie said. The same thing happened with my mother, and although it came out differently, with me too at the time my dad died. We were both angry that he "left us." We were angry that he worked so hard and didn't stop to take care of his own health because he was so busy taking care of everyone else (he was a small town doctor). We were angry about so many things.
Now, my mother is 92 and has just moved into an assisted living facility. As wonderful as it is, I think she still has times when that anger surfaces and she wants him to be there with her, and for them to have a "home" rather her being stuck somewhere with strangers.
She was hard on me about some things, but I've moved on and have forgiven her, and I just let her call the shots for the most part. She's 92 -- not 6, and is still capable of making her own choices.
My best wishes to you. I'm sure this is difficult to go through.
Di
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I'm glad you all had good days! We did too. We said last night that it was one of the most peaceful, restful, and enjoyable days we'd had in a long time. We ordered dinner ahead of time, so didn't spend all day cooking and cleaning, and were able to just talk and enjoy each other's company.
I had much to be thankful for this year. Now I can add that nice day to the list of those things.
Di
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Don't suppose it would work to stick your head in the snow and freeze the boogers, would it? Didn't think so.
Oh well. Just hang in there. We're all thinking about you, praying for you, and sending positive energies your way.
With much love,
Di
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Thank you so much for the update. As you can see, we all love "our" Addie, and are sending prayers and good thoughts for her.
Di
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Cheryl, no one really knows that. I remember getting myself prepared when I was diagnosed, because I didn't know if I'd survive, and if I did, for how long, so I made sure all my ducks were in a row. That meant will, living will/POA, and all that stuff, plus dealing with family and friends.
My goal from the first was to maximize my survival. There may come a day when I feel that means to stop the treatments. If so, I tried to "be prepared" early on. Of course, we don't get to set our own timetable for our life, but I think I'm much better off about it mentally today than I was 18 months ago.
God bless you all. I'm sending you my best wishes and prayers.
Di
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Whatever you choose, I hope you have fun with it! Just promise you'll be very careful in who you choose to do it -- make sure it's a reputable and CLEAN facility. There are some horror stories from poor technique, but if you have a good head on your shoulders and I'm sure you do, you'll know what to watch out for.
Just promise we all get to see it?
Di
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Well, I survived the port placement - ha!
Actually, I think I'd do that 3 times over and skip the MUGA! The MUGA is "one of those" where you have to be perfectly still for 30-45 minutes with one arm over your head. Yeahright. (Do these techs forget that we are patients, and are likely to be SICK and maybe a little weak? Aaarrgghh!!!
)
They had to sew up the little cut from the port, because there wasn't quite enough skin to use the dermabond (glue), but that's ok. It was a little sore the next day, but I can't even tell it's there today unless I touch it. No pain whatsoever.
My MUGA score was 58%. Didn't sound like I passed, but she said anything over 50% is good. The report says "normal," so I can live with that!
All is set for me to spend the day with the nurses in the research area (my favorite people!) on Monday -- all day. Then lab work Tuesday, then to a normal schedule for this drug. Keeping all digits crossed that it does it's stuff and does it well.
I'm looking forward to a peaceful Thanksgiving, and hope you all have a wonderful day. I'm so very thankful to have found this site, and found you all to share and grieve and laugh with.
Di
Lucie Update 01/18
in NSCLC GROUP
Posted
This sounds like one of those "six of one, half-a-dozen of the other" deals I've encountered myself. Not exactly what you wanted, but not awful either. My best wishes and prayers to the both of you. I have no knowledge of that drug, but I know many other do.
Di