SDianneB Posted December 16, 2004 Share Posted December 16, 2004 Wow. 2/3 of the way done - finally! Had a talk with the techs this morning and suggested we work on a method that will allow patients to sit upright in a chair with some kind of head vise that doesn't cover the mouth and nose! They said that they used to use a strap around the forehead, but people could still wiggle around too much, and this mask is the only thing they've found that works as well as they need it to. Well, obviously, you don't want your head wiggling around while the radiation is going through it - ack! Kathy, the simulator person, was in with me again today, and we talked about my "clean" PET scan. Also ran into the nutritionist I had seen while having chest radiation -- she ran up and hugged me really big! It was good to see her. She was a tremendous help to me. I had on my Christmas shirt with the kitties on it, so we all laughed about that! It was an easy, fun morning. I thought last night that I'd share some of the inner, secret fears I've had. I laugh about the image from the Stephen King stories of the machines deciding to take over and me having my head strapped down under that big radiation monster, but the real fears -- the ones that you find have made you hold your breath when you are thinking about them -- those are the ones I mean. The biggest one is the thought of radiation going into my brain -- on purpose. I was fully informed about this procedure for a long time before having it, so I knew exactly what was going to happen. What I didn't realize was the connection -- the DUH feeling -- when the first treatment began and I saw those lights as Addie had described. THAT made it real. THAT made it known to me that something was really happening. When I had chest radiation, it wasn't at all like that. Yes, I could hear the machine making little noises while doing its thing, but there were no lights, no masks, no restraints at all, and no reminders every time I was on the table that they were frying me from the inside out! This PCI is different. It's almost as if I can hear the noises and see the lights, and I wonder how many brain cells I'm losing that I may need. So Di, make it as bad as it can be made. The treatments just aren't that bad, even given the bleepin' mask. It's the benefit we get from it that matters -- THAT is why I have it, and THAT is why I go back every day and why I will finish this out. The reality is that I didn't just consent to PCI, I wanted it - I wanted it when I first researched it and found out the benefits. I lobbied for it when they were being equivocal about my chest CT in October, and until the clean PET scan in November. I went after it with a vengeance. I'm having it because it matters to me to have that much extra chance of survival. I'm still feeling fine -- going to work every day. Rather than feeling sleepy, I feel "droopy" at times. When I'm at work, I just get up and walk around for a few minutes and it goes away. No headaches still. Hair is still in place so far. I suspect that will change next week. All in all, a good day! Bright and sunny outside, and another great day to be alive!!! Di Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 16, 2004 Share Posted December 16, 2004 Di, I just wanted you to know that I have read all of your days. You are an amazing woman with an attitude that takes you far. Because of your great attitude, your posts brighten my day. Thank you Thank you. Keep up the fight and the love, wit and wisdom. I sure do enjoy you. Cindi o'h Quote Link to comment Share on other sites More sharing options...
Snowflake Posted December 16, 2004 Share Posted December 16, 2004 Di, I believe many of us have "hidden" fears that were we to share with others we would discover we are not alone. My big fear when I came home to heal after surgery was falling asleep. On the one hand, it was near impossible to get "comfortable" enough to sleep, but I was scared to go to sleep. Dave Grant put it in words a year or so after my surgery (and even longer after his) when replying to someone else's post. He said he had been afraid to go to sleep because he didn't think he would wake up again. That's EXACTLY what I had felt and didn't share with anyone, including my spouse... I guess my point is that maybe, when you post a "secret" fear, you are actually giving someone else empowerment and a feeling of not being alone, even in their deepest, darkest place. Thanks for sharing, Di! Becky Quote Link to comment Share on other sites More sharing options...
SDianneB Posted December 16, 2004 Author Share Posted December 16, 2004 Becky, that's so very strange. I had so many fears at first, that what I most wanted to do at times was sleep! It was like if I slept long enough, this would go away. Or, if I just slept and slept, I wouldn't have to ever wake up and face it. I think you're right -- when we verbalize or document a fear, there is always someone else out there to share it with. Or, in our case, to show the other side of it. Amazing, us humans, huh! Di Quote Link to comment Share on other sites More sharing options...
bacalice Posted December 17, 2004 Share Posted December 17, 2004 Di: couldn't wait to get home to see what happened but i am having trouble thi king and focusing. fortunately i have an excellent caregiver. she was found before i started pci. i now have a ridiculus amount of meds and for the first time, i can't do it myself well. there was some hestitancy on the part of the onc to give me pc because i have so many aliments that i have collected over the years to the point that i was failing in ability to be mobile and stable on my feet before thecancer struck. then finally a year later they decided to do it. hair is still here but i am prone to nausea and sleepy and tired but i am at peace with round the clock care that i receive and for some reason, it is one day at the time and i hope the pci helps but i am so glad i tried. i see the lights , i smell a strange order but it is over in about 5 minutes. this includes fitting the mask and i was told that placement was of utmost importance since they needed the zaps in the same place. My onc smiled brightly yesterday at my visit. mucus and coughing have decreased but i now have some kind of belching sensation but all in all i am more calm and whatever the end result, i tried and your comments and addie' amomg others have made the path easier. Marge, at 70 , helped too. You are almost through, bully for you. i will miss coming home to find out how your treatment went but i will be glad that you are through. You certainly have helped me through. May GOD BLESS. and thanks to all who posted about PCI. Headed for lunch and bed, i am hungry and tired Quote Link to comment Share on other sites More sharing options...
SDianneB Posted December 17, 2004 Author Share Posted December 17, 2004 Alice, happy snoozes to you, sweet lady! Di Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted December 17, 2004 Share Posted December 17, 2004 Di, So glad things are going well for you. You are one brave lady. (((hugs))). Joanie Quote Link to comment Share on other sites More sharing options...
paddy Posted December 18, 2004 Share Posted December 18, 2004 Diane, You are a woman of such courage! I just cannot believe you can actually still go to work after going through all these treatments. With an attitude like this you deserve good results. Lots of love and positive thoughts coming your way. Paddy Quote Link to comment Share on other sites More sharing options...
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