Bone Mets Thread
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My dd got herself and my 10 year old granddaughter Kindle Fire Hd's to. I have a kindle fire. Thank God for tech savvy old and young ones. I see and talk to my grands just about every day. Chatter my oldest granddaughter was dx bi-polar at age 6, so I know a little about that. It was so hard for her the first few years of her life. She had a very hard time getting her rages under control, but I am so proud to say that she is doing so much better, and has a great understanding about what is going on with me. We have some very intense conversations that help me to know she is going to be alright. I really appreciate all you ladies, it is such a relief to be able to speak your mind and not be judged about how you are feeling.
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I'm a very new grandmother, my baby is almost 9 months old. She lives less than an hour from me, if traffic is light:) My dd found out she was pregnant 3 days after by bc dx. My bone met was discovered shortly after that. I treasure every moment with her because I never know when things will change for the worse. You could say none of us ever knows how much time we have left but the reality for us stage IV girls is much more sharply etched. Kissing her soft baby hair and snuggling her warm, wiggly little body is just as good an anti- depressant as my Effexor. I am the only grandparent she has in the area so I understand what an important role I play in her life. I hope I get to be around for many years and watch her grow.
Caryn0 -
Chrissy,
My condolences on the loss of your son. But you are right: when we're depressed and we look inside we're just going to keep going down that dark well. That's not to say positive thoughts will get you out of it--hell, when I'm depressed and someone tells me to think of pixies and happy things I kick them in the shins. Hard.
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Chatter99,
This effing disease takes so much from us. There is a lot to be legitimately angry about. When I was first diagnosed I started to blog. When October came I was going off at anything pink. I recently read my posts from that time, and those about the Pinktober madness are filled with rage and anger. Boy, I took out everything I had on Pinktober. By the end of the month, I didn't care anymore. So anger can be constructive. I got it out of me and I felt--well, I can't say I felt better. Maybe resigned and more able to move forward is a better way of saying it. I too have a history of depression; I've been treating it for years and it's been under control for some time. So I understand how that cloud can come over and how rage can quickly follow. Damned brain chemisty.
Reach out--you have welcoming ears here.
My mom, who is 82, is healthy (knock wood) but she voiced the same disappointment about her appearance and usefulness recently. She told me life isnt for the faint of heart. As she put it, "Did you ever see a fighter come out of the ring who looked good?" We sure are fighting it out!
I was surprised that I had been debilitated so soon by that effing TFK flare. Nothiing's been the same since. My best friend visited me today and we're having a pajama party. (Okay, well we were until Grace fell asleep and I came here.) But we went out to dinner and I was enjoying the Christmas lights in the restaurant and then I realized: except for a doctor's appt and and errand, I've been in the house all December. Man, that sucks. I haven't been down to Rockefeller Center to see the tree or the lights on Fifth Avenue, I haven't been to the seasonal Christmas fairs. What the hell!!
So then I decided a couple of things:
- I'm going to go outside everyday. Even if it's just to walk a block. A very elderly and frail man lives in my neighborhood. It takes him a good 10-15 minutes to walk down the street with his walker and his wife by his side. Yet twice a day he's pushing himself to move. I shall do the same.
- Even if I'm in my jammies all day, I'm putting on my make up and doing my hair.
- On Christmas night I am going to take a cab down to Rockefeller Center and enjoy the tree. And I'll share the pictures with you.
On Christmas day all of your ears may itch a bit because I'll be thinking of you and will toast you all with a glass of wine!
Much love to you all! Thanks for being there for me.
Scorchy
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LauraOntario - When do they do the MRI?
I was surprised by my onc when he called to tell me the results of my back/pelvic MRI. I had already had CT and bone scans but never an MRI. Well he started off by telling me how much more detail there is in an MRI and that since I hadn't had an MRI they had nothing to baseline against so he couldn't tell me if there has been progression. But he did confirm that there was a fracture. So my impression is that he saw more on the MRI than he was expecting. So maybe it's a good thing that you're starting with an MRI. Although I don't really want to do an MRI of this particular area again. It was hard laying there for 50 minutes. Had to do some serious imagery so I wouldn't think about the pain since I was laying on my back.0 -
I'm not sure when they're doing the MRI. She gave me the impression it would be soon. I had one done last January, so they'll have something to compare it with.
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Ana,
Laying there for 50 minutes? I'm having an MRI of the lumbar spine next Thursday--now I know what to look forward to. Ugh!
Scorchy
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I would advize earplugs for the MRI. They do seem to take a long time. I don't really mind that except for the boredom, but I don't like the racket and they turned on music but they BLARED it because of the loud MRI sounds and that was even worse! There are times I enjoy loud music but not when I'm laying still.
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I like to rate scans by ativan. I would call this a 2 ativan scan.
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The sounds of an MRI are annoying. A combo of a jackhammer and someone banging on metal pipes with wrenches. The tech announces how long each sequence will take. 5 minutes can be a loooong time. Laying still is easy because you're so confined. If you are claustrophobic, Ativan helps as does yoga breathing.
Caryn0 -
They cover my eyes with a washcloth and that helps me with the claustrophobia. I wish they wouldn't talk so I could take a nap.
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Good idea, spamgirl. I've used an eye pillow and my mom has used a sleep mask.
Caryn0 -
When taking an MRI never ever open your eyes. I had to have them take me out of the machine last time cause I opened my eyes. There is like almost 1/2 an inch between your nose and the machine. Meditation does help
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Sleep mask: check
Ear plugs: check
Thanks, all!
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My pet scan was harder on me then the brain mri. The sounds in the mri were a little loud and the music from the headphones was lousy. In the pet scan they strapped my arms to my side and they were getting stuck on the sides of the machine. They let my dd come in the room with me after the first scan and told her to talk to me. She talked my damn ear off and I couldn't move so I couldn't tell her to shut up lol.
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He he he
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Haha! My mom had an MRI and they put on Frank Sinatra for her. She was like turn that off its terrible! Just because I'm old doesn't mean I like FS. She likes 50s rock and roll which is what she grew up with. Its funny because it happens to her all the time. When she wants new glasses they show her old lady styles. When she wants a new cell phone they show her the simplest ones. Poor mom lol.
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Let add one more thing: Led Zeppelin CD. check
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Scorchy,
Hi, I'm new here... I am going through the same things as you, from what it sounds like. I have also been somewhat agoraphorbic all December long. I have not gone outside, well I avoid it as much as possible, it's been hard to face the world. I get so disgusted by pollution and global warming that I can't even bear to look at the world: I'm in Chicago, it's December 23rd and outside of some very light frost there hasn't been any snow and it's making me hate Christmas. But you are right, I will feel better once I get outside and commit to some walking every day. Thank you for reminding me.
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Has anyone had a DEXA scan?? I am supposed to get one in the next few weeks and I have never had one before so I don't know what to expect. Any help would be appreciated. My MO did say it was not like a bone scan but that was no help.
Hope everyone has a Merry Christmas or a Happy Holiday no matter which one you celebrate.
AJ
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AJ a DEXA is easy peasy.......no need to undress just your shoes.......you lay on a bed type thingy and the scan does its thing.......takes about ten minutes or so. No contrast no nothing......I've had two, the last one only a couple of weeks ago. They are a good idea particularly if you are on one of the AIs as they measure bone loss rather than anything else and tell you doc if you need something to strengthen the bones or not.
Good luck and a Merry Christmas to all! It's Christmas Eve here and I still have a million things to do.......lol.....don't we all?
Love n hugs. Chrissy0 -
Thanks Chrissy. Merry Christmas my friend. Look for a package to arrive soon from me. I was a little slow getting to the post office this year. Love you. AJ
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Usually called a bone density scan in the US. Definitely a zero ativan scan.
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Well, that's one scan I won't be having. No point, since I'm getting Aredia (bisphosphonate) so if I have bone loss there's nothing more that can be done anyway.
I had a bone scan today. That's always an easy one - one shot of the radioactive stuff, wait 2 hours, short scan. Nothing yucky to drink, no noise, just lie there. I didn't even take off my shoes! I'll be having a CT on Thurs so will drink the yuck then. Where I have it done they don't ask you to change, just take off your bra and put your shirt back on. I just have to remember not to wear anything with metal.
I've had achiness where the met in my sacrum is (I didn't have pain from it previously) and my TMs are creeping up, hence my trip to Scanland this week.
I don't find the scans themselves difficult, but the waiting for answers, well, I don't have to tell you.
Leah
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Thanks for all the info ladies. I won't worry about this one now, but I am with Leah, the waiting for the results is always horrible for me.
Joy and blessings everyone. AJ
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Sorry you have to go to ScanLand, Leah. But I guess it's the prudent thing to do if your TMs are going up. Hope it doesn't amount to anything.
I fully expect to be followed with a bone density. I think if my onc saw that I was losing too much bone he'd be looking at a different treatment. Unless he would change the Xgeva to Zometa or Aredia or something else. Oh well, it has to be at least a year out.0 -
Ljuliad,
I had a friend come visit me Friday and when we went out to dinner, I realized that apart from a doctor's appointment, I had not been outside all December. I was digusted. It wasn't that I didn't want to go out, I was just so fuzzy all the time that I honestly didn't think about it. It was easier to just give in.
I decided that I am going to go out everyday--even if it is just a walk down the block and back, or a walk across the street and the equivalent walk in the park. It's just not healthy for us. If we can get out we just have to get out there!
If you like, email me at the email address on my blog and we can support one another going outside! No matter how much we can do about pollution and global warming. Both suck, but there is beauty in the world and we need to get out there and breath it in (and then cough).
Warm hugs,
Scorchy
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Hi all my Dear Friends,
I am catching up on reading posts. and I totally agree with Lizlemmon and other's, Macy, about depression. Just today, finishing up some last minute shopping, I asked myself, "wonder if I'll have another one of these Christmas holidays, or the other one is "wonder how many more of these I will have." I have a birthday next week and that adds to my "wonder how many" questions. Then I immediately switch to telling myself "well who knows so make this a good one." I talk to myself all the time
. I'm afraid to think too far ahead, I'm afraid to go there. I found another thread called something out "Death and Dying issues" for us Stage IV and sometimes I need to go there, but other times, I'm too afraid. My spirits have definitely been up since my breathing is better. Merry christmas to all you beautiful women. i would give you all a hug if i could.Linda
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Merry xmas Linda, hoping you have a stress free day!!! hugs to you and your family!!
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Merry Christmas from down under to all my fellow bone metsters!! I wish you peace, joy and long lives and here's hoping 2013 will bring good thing to all of us!!
Love n hugs. Chrissy0 -
Scorchy, hope you got to see the xmas windows, my favorite window this year was Barneys with the weird digital stuff, second was Bergdorfs MAcy's was sort of boring and Saks didn't really do anything different and was way too crowded.
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