SDianneB Posted December 9, 2004 Share Posted December 9, 2004 Third time's the charm, they say, and it is! I woke up early this morning, moved to my comfy sofa thinking I might sleep another hour (except those 2 darling kitties you see in the picture had other plans, such as running and jumping all over me!). While there, I was full of dread for that danged mask. Worse than ever. How was I going to stand it for even the rest of this week, much less next week and half of the week after? I get there, and walk in telling them -- no offense, but you aren't the highlight of my day! It gets them talking anyway. So, they put on the dreaded mask, and ... and ... voila -- not as bad! I had it all worked up in my head as to how awful and unbearable it was, and I guess I made it out to be 10 times worse than it really was. By the time I left, I told them I'd take back what I said -- that the traffic is the worst part of my day usually, and they were at least 2nd worst! Amazing what the mind does for the body, huh. (Even when it's in a toaster every day!) I thought yesterday I had the first headache from this, but wasn't sure if it was from the PCI or just sinuses, as I tend to get a little stopped up this time of year. I took a few Ibuprofin, and that was the end of that. That means I'll probably go back to sleeping on the sofa for a while, because when I sleep propped up, I can sleep all night through rather than waking up with a stuffed up nose! Otherwise, I'm feeling good, and would just like for this incessant rain to stop for a while. I work in an art gallery, and our manager is an artist. I've told him about my mask, and he wants it when I'm done to make a piece of art! He does some amazing things (PM me if you want a link to our website -- it's great!) and no telling what he can come up with for this thing! I told him it will be all I can do to make it here with it, trying to avoid the temptation to run over it with the car. Over and over. The truth is that the thought always lurking in the back of my mind is this: "Do all you can do to survive." That's what they call "instinct" -- survival instinct. It's what I committed to back in June when I was diagnosed -- to do everything I can to survive. If that isn't the way it works out, then I will know that I did everything possible and didn't ever just give up or give in. Sure, I can take that mask on my face for a few seconds every morning -- for as long as it takes. Because it's a hell of a lot better than the alternative. Di Quote Link to comment Share on other sites More sharing options...
Ry Posted December 9, 2004 Share Posted December 9, 2004 Your post made me remember when Bobmc was having his mask made. Below is the thread on all the great ideas for the mask: http://lchelp.com/community/viewtopic.p ... ation+mask Quote Link to comment Share on other sites More sharing options...
SDianneB Posted December 9, 2004 Author Share Posted December 9, 2004 Ok, that was TOO funny! Fay took the cake -- a huge ice cube! Worth considering -- hmmmmm..... Addie told me that she had the outline of the mask weave on her face for a while, and I had that today for the first time. (Or maybe just noticed it the first time?) Strange! I finally learned to let the pressure of the mask be on my forehead, so that may be why I just noticed it today. And I'm trying to pin down, for scientific purposes of course , if that "taste" is a "taste" or a smell! Like this is going to change my life either way. Now that I'm doing better with it, tomorrow is the last one for the week, and I will get to be lazy Saturday morning - yay!! 9 more to go ... Di Quote Link to comment Share on other sites More sharing options...
Addie Posted December 9, 2004 Share Posted December 9, 2004 Addie told me that she had the outline of the mask weave on her face for a while, and I had that today for the first time. (Or maybe just noticed it the first time?) Strange! I finally learned to let the pressure of the mask be on my forehead, so that may be why I just noticed it today. After the first couple of days, I got the waffle on my chin and the mask felt a bit tighter. I was told (and forgot to mention this to you before) that the mask does continue to dry and sort of shrink a little....so after the first 3-4 days, it might feel as if it is tighter. My concern at the time was that it was tighter because the old brain was swelling!! But no....the techs said the mask sort of gets a bit snugger as it dries out. It wasn't so tight I couldn't breathe, tho....so I handled it. You will too! The worst of the Waffle Face routine was the day of the sim...when they made the mask. I had that cross hatching on my forehead for the better part of an hour. I had to avoid everyone I ran into carrying a pat of butter and maple syrup! Hahahahaha Quote Link to comment Share on other sites More sharing options...
SDianneB Posted December 9, 2004 Author Share Posted December 9, 2004 I was prepared for all that because of YOU, Addie -- thanks so much! If I'd just listen, the female tech was telling me to move "up" in the mask so that my forehead is covered. That eases the nose and chin a LOT. I finally figured out what she was saying this morning, and she was right -- it helped a lot. That's probably why I had the outline moreso today. I have "wiggle room" in the nose and chin, so if that gets tighter, maybe I won't notice!! I don't know if they'd let me take a photo or not, but they have all the masks lined up on shelves. When you walk in and see it, it looks really strange! The tech said "like little soldiers." Looked more like little monsters to me! Di Quote Link to comment Share on other sites More sharing options...
Addie Posted December 9, 2004 Share Posted December 9, 2004 The tech said "like little soldiers." Looked more like little monsters to me! Sort of like walking into the prop room for the series of Halloween movies.....eh? What would they be up to by now? Halloween XXIV?? As for moving up into the mask...I was always in about the right place...but then just had to tilt my chin up a bit, to really fit into the mask properly. I never really did get too much of trapped or odd feeling....because really, it all went so much faster than the lung radiation. Once they slap that mask on you....just a minute or so to line up and then they leave the room and hit the "GIANT TOASTER" button. Anyway...it all now seems like a piece of cake compared to what I'm having to go thru to deal with this dadgummed cyst on my ovary. Ever gotten up and walked out of a GYN oncologist's office? I did. Today. Won't be going back anytime soon either. They can all just leave me alone for a while. Everyone is 99% convinced the stupid thing IS just a benign cyst anyway...but tell me why a doc's ego is such that they just HAVE to check it out for themselves when all he's gonna do is be on standby during surgery anyway? Then tell me why if he's such a great doc....the window sill next to the exam table was filthy, there was no place to hang my coat or slacks other than to fold them and put them next to the sink....and to do so I had to step around an oxygen tank on the floor? Sheesh....I felt like this was the 50's and I was there for a backroom abortion. Ick. Gave me the creeps. I walked out. Sorry...didn't mean to hijack your thread. Got off on my own tangent. Quote Link to comment Share on other sites More sharing options...
SDianneB Posted December 9, 2004 Author Share Posted December 9, 2004 You just hijack away. Geesh. That's the way I feel about the imaging center that the Oncologist own and always want to send me too -- dirty. Ick. The one and only time I was there, the base of the scanner looked like someone had thrown up on it ages ago, and it had just been left there. Eeeuuu. When I got the reports from all my scans, almost all of them reported a small cyst on my left ovary and a healing cracked rib. That was news to me -- no one mentioned it before. And, the Oncologist wanted to send me to an Endocrinologist to check out the cysts on my thyroid, but the Pulmonologist and my PCP say that since they are stable on 2 ultrasounds, to just leave them alone and check with ultrasound in a few months. I'm with you -- I'd just walk out, and they can either figure out what to do or leave me alone! Of course, you are right about the PCI being really fast. If it weren't fast, I'd be in the funny farm about now, I think! You know me -- I'm the one who will NOT go into the tube for an MRI either!!! Di Quote Link to comment Share on other sites More sharing options...
schmaydee Posted December 10, 2004 Share Posted December 10, 2004 ...i dont think most folks feel much of anything until all the treatments are done.... i got sick when i started 'em..... but i dont know what caused it... might just have been a bug..... or my imagination... dunno... my probs started when they hit me w/the decadron....just to make sure it wasnt the brain-frys doing it)...... and steroids are eating my lunch now.... unless you really get to hurting (and hurting baaaaaad) i'd recommend not taking the decadron.... they'll give it to you real (too) quick if you say anything..... i wish i had kept my mouth shut...... .....s Quote Link to comment Share on other sites More sharing options...
Lynne123 Posted December 11, 2004 Share Posted December 11, 2004 I have limited stage smlc and received Camptosar/radiation combo. I have complete my treatments and am now experiencing ringing in my ears and tingling in my hands and feet. Has anyone experienced these side effects and if so, for how long. Also, PCI was given to me as an option. My oncologist does not recommend it. Any suggestions. I'm torn. My cancer was found very early and responded extremely well to the chemo/radiation. I don't know which route to take. Thank you. Quote Link to comment Share on other sites More sharing options...
Addie Posted December 11, 2004 Share Posted December 11, 2004 Hi Lynne...and welcome. I can't answer to the question of ringing in your ears....except that I do know cisplatin can cause that. Not sure about camptosar. I was given carboplatin...and had no ear issues....but the tingling hands and feet are fairly common, I think. I had a lot of it in my hands...mainly my left hand and wrist...at first. Not too much neuropathy with the feet...until chemo was about over. I finished chemo in mid September and I still get the tingly feet mostly at night when I'm in bed! Not if I'm sitting or standing...just when I lie down! Some oncs do not think PCI is worth it.....but my onc definitely does! Microcells cannot be picked up by xrays or scans and since chemo does not cross the blood/brain barrier well...having the PCI to take care of any lurking microcells in the "attic" made a lot of sense to me. I had 13 days of PCI...finished it three weeks ago. It wasn't all that bad, really. My memory is still a little iffy...and once in a while I still sorta feel like I've got a dull headache....but if having the PCI helps even a LITTLE BIT, to keep the cancer from showing up in my brain....I figure it's worth having to make lists for the rest of my days....you know? Glad to know your cancer was caught early (as was mine) and that you responded well to tx (as did I ) You might find it worthwhile to discuss having PCI with a rad onc....or get another opinion about it from another oncologist. For me....I didn't want to choose NOT to have it...and then someday find myself with brain mets. I'd be kicking myself for that. And if I do someday get brain mets anyway.....well, at least having had the PCI I'll know I did everything possible to prevent it, even if I got them anyway. Good luck with your decision and hope you find lots of help, hope and encouragement here. There are lots of true survivors here and a good attitude is always a plus!! Again....welcome! Quote Link to comment Share on other sites More sharing options...
schmaydee Posted December 12, 2004 Share Posted December 12, 2004 addie, i see you finished pci ....have you fully healed up from that? now? you know the tired etc... how long did it take? i had 19 of 'em (ending 12/3)....they said it'll be 12/26 before i'm kinda up to speed....what was youre experience?.... thanks, ....s Quote Link to comment Share on other sites More sharing options...
Addie Posted December 12, 2004 Share Posted December 12, 2004 i see you finished pci ....have you fully healed up from that? now? you know the tired etc... how long did it take? I finished PCI on Nov. 17 and no, I wouldn't say I'm fully over the effects yet. My memory is still a bit iffy...and I do still seem to tire out faster some days. BUT the really profound fatigue is pretty much gone by now, now that I think about it. There were some days where, after breakfast...a little computer time and then showering and dressing....I'd be exhausted before it was lunch time! If I sat on the sofa, I'd nod off. I'm not so inclined to do that anymore though. I was told the fatigue could last for a few months. I'm finding it to be sort of an off and on thing....some days worse than others. As for the steroids, I take them anyway for polymyalgia (like arthritis of the muscles). Only take 6 mgs daily and that is all I took during PCI. Seemed to be enough to forestall any severe side effects.....ie: headaches, brain swelling, etc. The thing with the fatigue....is that I just don't fight it! On the days I'm really tired...I don't do anything much more taxing than knitting or reading or watching t.v. Not exactly strenuous activity....and it helps not to overdo when I'm really, really tired. Quote Link to comment Share on other sites More sharing options...
schmaydee Posted December 12, 2004 Share Posted December 12, 2004 ..so do you think that you are "just now" getting over the worst of the fatigue? ...i dont think there's a lot you can do to help get over it....... it just happens when it does..... .....just about everybody similar to me seems to be doing quite a bit better..... i mean there's no way i could be working.....or even driving to work.... weeks before i pronounced ned (what does ned stand for?) i was pretty darned close to being able to get back to work......i felt pretty great...... that made the "knock-down" from the pci (steroids,flu-bug, wateverdidit).....and the recovery time such a drag..... ...s Quote Link to comment Share on other sites More sharing options...
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