Calling all TNs
Comments
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Marsha, thanks for your support, wishing you the very best also. I've also been experiencing slight dizziness ( more an off balance sensation) and sinus issues-but I think that's allergies. I hope.
Nettie and a Radical I thank you for replies. This makes me feel less alone as if everyone rooting for me gives me strength! I'm not sure if they have "open " MRI at my hospital, but I will ask.
Positive wishes for everyone!
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Bluebird like you I love birds. You will remember the film "The Birds" by Alfred Hitchcock and Tippy Hedren, well when I get home from work there are hundred's of birds just sitting waiting for their daily bread. They completely cover my washing line and the trees surrounding my home is absolutely full of them. It is just like that film and if I didn't know they were waiting for their meal from me it would be quite still and eeriel. When I moved in I started throwing them a few slice of bread, now I have to buy a whole loaf every day. They are just lovely but I'm so glad my cat is getting to old to bother them now. I'm not sure if you have Tui's in America but their singing wakes me every morning and it's beautiful.
I glad that you still enjoy the earthquakes. Thank God cancer didn't take everything away from us.
Mags, Syl58 and lookingfw, my heart goes out to you all. I can feel your anxiety and hope that everything goes well for you. I am holding your hands all the way and hoping for good news. Cancer sux big time.
CanuckMom welcome. We certainly don't mind you being here but sorry you have to be.
Tif absolutely great news.
Sending everyone big warm hugs for a good day.0 -
Thanks Radical - I will ask my oncologist for the genetic testing.
Cocker_spaniel, thanks for the welcome. It's nice to talk to others in our situation.
Slv58, lookingforward, hoping for clear scans for you both....sending positive thoughts.
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Hi Shari ~ I've had MS for over 11 years now...so that means I have a lot of MRI experience!
As others have recommended, putting a washcloth over your eyes is a really good way to help with claustrophobia. It helps to keep your eyes closed, and if you do open them, you will only see the cloth and the diffused light inside the tube. This trick has helped me get through my many, many MRIs. A lighter colored cloth is probably better than a dark one.
What I have learned to do is to look up at the ceiling of the MRI machine room just before you put the washcloth over your eyes. That room always has a high ceiling, due to the size of the machine and the air flow needed to keep it cool. By looking at that high ceiling, you can keep that vision in your mind, and not the tube. Sounds silly, I know, but it works! (Mind over matter!)
There is a fan inside the tube. You can ask for it to be high or low. You can also ask to be covered with a blanket, if you get chilled easily. They will have you change into appropriate apparel, usually scrubs, for the procedure. Some places will let you wear your own pants - if they have absolutely NO metal zippers, eyelets, grommets, whatever. Bras have metal, so you can't wear them. You can usually wear your own socks, or they will have the socks with the grippy nubbins on the soles for you to wear. Take off all jewelry, including piercings. The MRI machine has a very strong magnet, so anything metal could cause serious damage to you and the machine.
The techs will have you lay down on the machine's narrow table. They will put a wedge under your knees to keep your back flat and comfortable. For a brain MRI, they will put a plastic cage over your head to prevent movement. It sounds creepy, but if you put on your washcloth first, it's not so bad. The techs will put padding around your face for comfort. Before the cage, you will be given earplugs, usually the squishy foam kinds. The machine gets pretty noisy, so these really help. When you are settled and comfy, the table moves you into the tube.
Unfortunately, you can't wear headphones during a brain MRI, unlike for other scans. Music helps to pass the time. The good thing is a brain MRI isn't long, about 20 mins. If your doctor has requested "with contrast", you will be rolled out of the machine and contrast fluid will be injected into your IV port. The IV port is put in by a nurse before you go into the MRI room. The contrast "lights up" any active inflammation in brain tissue. Often the doc will order "with/without contrast" so that the two can be compared. The techs will take only a few scans with contrast. Figure on 20-30 mins for the imaging procedure.
Try not to move! Movement causes fuzzy images, and longer time spent trying to get a good image. If you have contrast, the tech will tell you to keep your head in the same position when they roll you out and back in, and during the next scans because they need to match the non-contrast images as closely as possible.
They will give you a squeeze bulb on a long rubber tube to hold during the procedure, with instructions to squeeze if you have a problem. You will actually hold only the rubber tube. The techs will be checking on you through an intercom within the machine tube. No one is in the MRI machine room during the imaging - the techs are in another room, with control panels and monitors, behind a large glass window. They will ask you how you are doing, and will tell you how many minutes (yes, minutes!) each imaging session will be.
If you are very anxious about all this, you can be given something to calm you. Some people fall asleep, and that sounds great, but snoring or movement can really mess up the images. Take the smallest amount that you can get by on.
The MRI machine uses magnetic fields to produce the images. I think it has something to do with water molecules in the tissue. There is NO radiation involved, such as in xrays and CT scans. Once in the machine tube, you will hear the fan and the machine motor. Then the tech will talk to you over the intercom. After he/she tells you how long the next imaging will be, you will hear the machine whirring, and then there will be loud bursts of noise, in certain patterns for each type of image they are getting. The machine takes images in "slices". It can take them side to side, top to bottom, front to back - as it moves along slice by slice. There is no movement of the machine. Sometimes you can feel heat moving on the table beneath the area being scanned. I have never felt it on a brain scan, but have with spine scans.
How fast the images can be read depends on the facility. Sometimes they are read, dictated and typed the same day. Most modern facilities send them electronically to your oncologist's computer. Other smaller places may not have this capability, so it may take days until your doc has the final report. Imaging centers will often mail the patient a CD with the images and report, if requested. Be aware, the images can be hard to decipher to the untrained eye.
I hope this helps you to prepare yourself for your first MRI. If you have any questions, feel free to ask or PM me.
Think lovely thoughts! ~ Shar (in Ontario, Oregon!)
P.S. Ask all those ladies in your pockets to be very still during the scans!!!
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Shar, thank you so much for that very detailed description! I really appreciate the effort you put into that to help me prepare and understand what it will be like. I was going to wear a small "blindfold-for lack of a better description- that is like a small pillow filled with lavender, but now I'm guessing that it may not fit under the plastic cage? I'm also wondering why a light coloured washcloth would be preferable? I only have dark ones lol. In situations where you have to stay still, I always worry about getting an itch! I guess that's where meditative breathing will help. I wish I could listen to my verbal guided meditation for that, but I often fall asleep when I do. My MO has ordered with contrast, so I have to prepare for an IV- which I hate as I have terrible veins, but will do what I have to-I'm in fighting mode again.
Ok Ladies, no jokes being whispered in my pockets!
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Shar, that was a great description of a brain MRI. Thank you so much. I will remember all that in case I every need one.
Marsha and Shari....we will keep still in your pocket and try not to tickle you.....we will just be praying, sending good woo, calming vibes or whatever it is you need in the moment.
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cocker, Birds was a great movie! But i like horror films. Ive always wanted to visit NZ and Australia to see their birds. I dont know if id like having my whole yard covered in them though. LOL
I just had my second brain MRI last week. I do meditative breathing and praying. The ativan will help. Your whole body is not inside the tube so that might help claustrophobic issues. I also keep my eyes shut and they tuck soft pillows around to keep you still. I try to pretend I'm lying in bed. (With really loud bad electronic music playing! ) ha
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You are very welcome, Shari.
I should have said that I like a lighter cloth so that I can see diffused light through it - I think darkness would make me more anxious. If you are used to wearing a sleeping mask, go with the dark. I would take the lavender mask with you, and ask the techs about using it. As long as it has no metal on/in it, they shouldn't care. They will know if it will fit. The cage isn't over your face, just across the forehead and sides. It snaps into the table. If you are using the lavender sachet for calming/relaxing at home, I would definitely take it - nothing better than a familiar friend!
Take your music and ask the techs if it is possible to listen to it. They may have a way to pipe it in, maybe over the intercom. Just don't have music with words - you don't want to be singing along (especially with that chorus of back-up singers in your pockets. Next thing you know, they'll start dancing and snapping their fingers!!! Sorry, but an Elvis movie is on right now...and they are dancing and...well, you know).
Keep your breathing steady - no jerky moves. I try to do yoga belly breathing while I'm waiting for them to start, but quickly forget about it and just breathe my normal way. Just breathe! And visualize...watch those "silver clouds" floating by!
Oh yes...the fear of the itch. I suffer dry-mouth from all my MS meds, and always chew gum. Well, not in there! I always fear that little tickle in the throat - you know, the one that only shows up at church, or at a school play, or anywhere quiet where it isn't welcome. Aaarrrggghhh!!! You will be okay. Just don't think about it, 'cause if you do, that little bugger will pop up and torment you! I used to be the "perfect" MRI patient...now I have little MS spasms to worry about. The techs are great - they'll get you through it all.
I have never had problems with the IV. The nurses are well-trained and well-practiced - they will take good care of you.
You will not receive the report before your MO, and the radiologist will not talk to you either. The imaging center will not give you results. Maybe you can ask your MO to call you with the results?
By the way, most neurologists don't like open MRIs. They don't feel that the images are clear enough. I don't know about other docs, but neurologists are very persnickety about imaging. The "open" part is supposed to help patients feel less claustrophobic, but what does it sacrifice? You want good clear images so there is no doubt in diagnosis.
Shari - glad to hear you are back in fighting mode. No Tai Chi in the pockets, Ladies!
We will all be with you on Tuesday (oh no, not another MRI...okay, okay, I'll take one for the team) ~ Shar
P.S. Shari from Ontario - not only am I Shar from Ontario (Oregon), but I am originally from the Detroit, Michigan area...across from Ontario! I wonder if some of my relatives think I live just across "the river"!!!
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Spica that was a brilliant account of an MRI and I am sure will bring some comfort to the ladies going through one. I had several scans when first diagnosed but I can't remember whether one was an MRI and I haven't looked at my 1000 and more!! pages of notes since my surgery. Just don't want to go there.
Mags, Syl58 and lookingfw still in your pocket and keeping as still as possible (If you knew me you would know that is almost an impossibility for me). lol
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thanks Annie....leaving the house in just a few minutes for the biopsy. then the waiting for the results begins!Mags
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Mags, Shari and Marsha - I am thinking of you as you go through testing and waiting on results. You will all be in my prayers. Sending gentle hugs and prayers.
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Annie: Oh, so very true! Love it. Sending hugs to you and hope you had a great weekend.
Linda
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Hi all!
I'm so far behind on this thread-I'll never catch up! Hope you are all doing well today. I have a question for you all. Have many of you kept your port in after chemo? My onc mentioned that I might want to keep it for awhile once I'm finished chemo. He said TN is sneaky and I may end up needing more chemo.
They have you come in for port flushes every month. I forgot to ask him how long he thinks I should keep it. So did any of you keep your port or still have it?
Wishing you all well. Hugs, lilyrose
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lilyrose I wanted to keep my port (just in case) but it was not to be. Went for a monthly flush and the darn thing blew a fuse. Started to get very painful as they flushed it and then the area all around it swelled up and the fluid leaked into the flesh. If that hadn't of happened I would still have it in now. I loved my port it was so much better than them digging each time to find a vein that wasn't there. Thank God I had finished treatment.
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strange, my onc. never offered the port to me..I guess they are waiting to see how my veins hold up.
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Lilyrose, Hi there, I don't post very often, just lurk often. My MO suggested I have my port removed when I finished chemo and radiation. But I wanted it left in until my next scan just to make sure I was NED. Taking it out was a breeze. I asked for local instead of their usual knock out. Not a problem. My port wasn't all that comfortable, so I was happy to have it removed. If I ever need to get one again, I would do it the same way. Wishing you well in your recovery.
Cocker, I see you are up to your feisty old self. Love that cartoon.
And to you gals who are on the hellish roller coaster ride waiting for results: I hope you all get the all clear results soon.
I'm spending the day with my nearly 14 year old GD. With my guidance, she made a loaf of sandwich bread and a loaf of zucchini bread using zucchini from her very own garden. She is so special that I can leave this earth knowing she will conquer every thing that comes her way. Wants to be a zoo keeper or a marine biologist. And if I may brag, she writes better than any high school student I ever had (25 years of teaching hs).
I think lymphedema is going to be worse than my bc. Maddening, I say!
My best to all. Jan
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Jan yep my port removal was a breeze too. Just under a local as I didn't want to be put out anyway. Must have taken 10 minutes. Took longer to get me ready. When I asked the surgeon when he would take it out he said its gone. Was a bit uncomfortable when it was put in across my right shoulder blade when I laid down at night but I have hidden veins (that's providing there are some there!!) so I was pleased to have it.
Yep Jan I'm still getting up to mischief but I do love to, and make people laugh if I can. Helps me through all the bad bits of life.
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me and my port had a love hate relationship...it always hurt. Due to that I had it removed almost immediately after finishing chemo. I just read an article about the titanium they use for some of these implanted devices and biopsy markers. some of them contain nickel...which I am allergic to so perhaps that is why we did not get along so well. The initial biopsy marker hurt inside until the breast was removed too....hmmm???0 -
"With really loud bad electronic music playing!"
Bluebird, ain't that the truth!
During c-spine MRIs I ask for smooth jazz. It's pretty awesome when the music syncs with the machine 'noise' !
~ Shar
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Thanks Annie,
I can only remember one year in my 11+ years of MS when I didn't have a MRI, and some years I've had multiple ones. Practice makes perfect!
By the way, I've found the answer to getting past thinking about BC all the time...having another crappy disease to deal with.
I don't recommend it.
~ Shar (aka Grandma Wobbles)
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slv( shari): pls ask if open MRI is an option for you. Like Nettie said, even for me closed MRI is a big no. I got my MRI done in two installments even after taking an anti- anxiety tablet. Finally i decided to call my husband in and make him sing and I also hummed along...30 minutes i had to stay still, that means 20 songs..thats how i calculated as i went in.
ally: i so much understand your situation. i was planning to have my second baby when this diagnosis came along. and I have an unknown mutation in my BRCA2. Doc says it looks like a harmless one but still my ovaries and uterus etc are also under screening along with breasts. Do everything to take yourself far away from this disease, even if it means, removal of uterus or ovaries. Your life is more important than a life which has not yet arrived.
stupidboob, tifj and everybody who have completed milestones or NED..congratulations!
tifJ: thanks for sharing that lil piece of info about bone pain vs muscle pain.
simple: thanks for the link
cocker, stupidboob and others who shared that info abt the virus... thanks!
I hope, I hope that by the time my daughter grows up, BC will be a 100 % curable disease ..
Lily: my port is still in. My onco said "If you can make it for the next 4 years, I will get it removed - and I hope you will do really well". So its in. You need to get it flushed once every 3 months.
A friend of mine....a young girl age 27 with 2 beautiful children, one 6 and another just 9 month old baby, is battling diffused stomach cancer and got jaundice in between chemos. I am really worried for her. Pls keep her in your prayers too.
love to all and hugs to everybody who are waiting for their scan results.
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canuckMom - I didn't have a port either - wasn't offered one by my MO, but fortunately my body had one perfect little vein which took all 8 rounds of my chemo with nary a bruise - I feel so grateful for this alone. If your veins are fine - all should be well. Good luck to you during your chemo - it can be quite the roller coaster, but this is a great place for tips and practical advice from many who have travelled this path before us.
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BanR, I hate this disease, lots of positive thoughts and prayers for your young friend. This is so unfair.
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Adagio,
All 8 rounds in one vein? I've had 2 rounds ACT and those two veins still hurt like he'll to the touch. The more recent one from a week ago is still bruised. I'm glad my teeth are decent because between my hair and my arms, I'm looking like a heroin addict!
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I'm new to this thread so Hi everyone.
I had a PICC line instead of a port. See http://en.m.wikipedia.org/wiki/Peripherally_inserted_central_catheter
It was inserted by a senior nurse at my infusion centre. It needed flushing and the dressing changed weekly, covering during a shower and no swimming is allowed. These last two points were a pain but apart from that I got on great and had 4 * AC and 12 Taxols. I wasn't ever offered a port (I never thought to ask for one - at that time I was in a bit of a blur) although I saw many when I was having chemo (I'm with Kaiser so it wasn't an insurance decision) I wondered whether it was because my BC was on the left or because I was dx with Inflammatory BC. It was removed in a couple of seconds and after my last chemo and I have just a small scar on my arm.
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I'm another one that had a love/hate relationship with my port. It was great for chemo infusions and antibiotic infusions when I developed neutropenia. It was always uncomfortable though and I never got used to it- I couldn't wait to get it out! That decision was made for me 5 days after my last chemo, the catheter to the port became infected and it had to be removed right away. I had 12 days of IV antibiotics and I really missed it then! I have no decent veins left in my arm! They left the removal incision open (because of infection) and I had to "pack" it for 7 weeks. I rarely moved my arm during that time because of the pain and this eventually led to adhesive capsulitis (frozen shoulder) and 10 months of therapy! So, more of a hate relationship I guess!!0 -
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to all the wonderful, generous and supportive women on this board, thank you for all you have given me. I must say everyone was quiet and still during the pocket party! Well I'm home now and still a bit loopy from the Ativan, but just wanted to report it went well and I felt very little nervousness (thanks to RX!) and Shar's wonderful detailed description was bang on! Nothing was left out which made me so much more relaxed. And yes the thing is very noisey-really bad electronic music, with no beat!
Now the hard part of waiting and praying. Thank you everyone!
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Marsha, thinking lots of positive thoughts for you tomorrow. Wear big pockets, cause there are a lot of us jumping in and we will be very quiet when need be! Hugs!
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