SDianneB Posted December 7, 2004 Posted December 7, 2004 As Addie would say, I had my head in the toaster for the first time today! One more new thing in my life -- another first. I made a big mistake though in not specifically requesting to go back to the same techs who gave me the chest radiation. The 2 this morning are nice, but the others were really wonderful. They would greet me with hugs and we'd talk about our kitties and all kinds of things, and they were ever ready to answer questions. The ones this morning were all business -- nice enough, but more interested in getting me in and out of there. I asked how long I'd be there -- "not long." And they were gone. The dreaded mask from yesterday was clamped onto my face and head. Ack! That is a really awful feeling the first seconds when it goes on and feels like your head is in a vice grip! At least it was dry today and wasn't like having a wad of warm dough plopped onto my face! Eeeuuu. I'm becoming quite adept at calming myself. After so many scans and procedures, I figure it's about time. I learned years ago in lamaze class, of all places, that those "deep cleansing breaths" (breathing slowly in through the nose and slowly out through the mouth) are great for relaxing. I don't know if they help women in labor or not, but they are sure great for relaxation! Anyway, it just took me a few seconds to relax and settle into it. Then .... I saw the light! I saw the Light! lalala .... Seriously. Little streaks or fingers of blue lights - awesome! Just for a nanosecond. Some say they smell an odor like an oven warming up, but I didn't notice a smell -- just the lights. Really strange. In and out of there in 6 minutes or so. When I had chest radiation, I used to say that taking my blouse off and getting positioned took the most time, and now that I don't even have to do that, it goes really fast. All in all, I'd rather be bowling or something, but this won't be a problem at all -- not for 12 treatments. Last night, I got home and there was an EOB from the insurance company from the Radiation Oncologist for early in November. Since I hadn't seen him since Oct. 18th, I took it with me and asked about it this morning. Seems as though they have 2 patients now with the same name! Yikes! Got the insurance straightened out, but I hope they keep the rest of our stuff separated! That was a little scary thought! The worst is that my 91 year old mother got really weepy and lonesome to see me over Thanksgiving, so says my niece. They wanted to fly me home to surprise her at Christmas, but I just can't plan that far ahead right now given that I have no idea how this will affect me. We'll try to make this happen in the spring though, for sure. So far, so good. Will see what I feel the next 24 hours, and will report on that the next time. Anyone else want to chime in? Di Quote
schmaydee Posted December 7, 2004 Posted December 7, 2004 ....hey ..i'm just glad they got everything straightened out where you could get in and get 'em...... if you only see the light ...then you can only be (@ most) 1/2 crazy.......( i gots de lites and de smells)..... they had me do 20 of 'em...... dont know if that was necessary..... i know i was feeling really good when i started and havent have a good day since i started 'em......(my last one was fri).....and i'm still feeling a little worse everyday...... . oh yeah..... i wouldnt let give me steroids (like i did) unless i absolutely had to have 'em ..... ......its all guessing anyway......(pci) but i think w/ls sclc you prbly should do some of it....... ...............s Quote
bacalice Posted December 7, 2004 Posted December 7, 2004 Di: I am right with you. This was day one for me. I couldn't sleep last night or take a nap today. I am still hyper. I can relate to the streaks of light. The mask bugged me but I tried to take myself to another place and i got through it. I received the radiation series from this facility and they all know me and acted as if they were so happy I had returned so it was like being with old friends. I was not offered PCI earlier but my onc decided to push it on me. I am 78 years old and there was some hesitancy earlier in the game. Comments from you and a few others gave me the courage to try it. Treatment itself was not more than three minutes. Of course setting me up for treatment took longer but it should be faster tomorrow. I saw the streaks of light and closed my eyes tighter. My jaw began to twitch but it was the unknown that bothered me. I am now eager to see how I feel as time goes on. I was told that my hair would go. Dianne, your suggestion that we write is a good one so I will post as the process continues. Maybe we will help ease someone's fears. I would like to say thanks to Nina. I have read your posts and looked at your picture for months. Patrice: Thanks for your words of comfort. Peggy: I appreciated your good wishes. Again, I am grateful for the friendly welcome that I received. I have been lurking for quite awhile and benefitting from your posts. Gentle hugs all around.[/b] Quote
SDianneB Posted December 7, 2004 Author Posted December 7, 2004 Wow! We're going through this at the same time! I'm glad you're having it done. When I checked out of the Oncologist's office recently, there was a lady there with her husband who is in her 70s and had recently completed PCI. Bravo to her! She lost her hair, and her husband said she did really well but didn't always feel so good. I bet that if I catch the woman who gave me the chest radiation and give her a hint, she'll get me moved over! Otherwise, I'm not going to rock the boat for so few treatments. I went for 7 weeks for the chest radiation, so would have not hesitated to change that, but this will go much faster, and I'm sure I'll get through it fine. (But I will surely take a chance if I see one!) Keep writing -- this helps me too, just knowing that others are experiencing what I am every day!! Di Quote
daggiesmom Posted December 7, 2004 Posted December 7, 2004 To Diane, Schmaydee and Alice, Boy, what a BRAVE BUNCH you are! I'm cheering for you all. Keep up the good work girls! So proud of you all. Joanie Quote
Addie Posted December 8, 2004 Posted December 8, 2004 Hey...this might be the first lchelp Brain Toasting Blog....eh? All of you ladies are going to do just fine. I'll tell you what my Rad Onc said on my last day of PCI....and that was, "Use it or lose it!" His comment was in response to my saying that while, yes...I was noticing some memory lapses....I was still reading daily, including the newspaper, and also doing the occasional crossword puzzle PLUS watching Jeopardy every night, trying to sort of "test" my brain a bit. He said this was a good thing to do, because the "use it or lose it" thing applies even WITHOUT PCI! I finished up my 13 sessions three weeks ago today and while my memory isn't getting any worse at this point, it's not getting any better yet either! For the time being, anything really important gets written down! My head is smooth as a baby's butt.....except for a small area at the back of my head which I have dubbed my "hair yarmulke"! I guess the radiation beams missed that particular area. That part needs a weekly shave or it starts to feel like little needles poking into my scalp. The headaches have been minimal....coming and going. Same with the fatigue...although in general, my energy is lower. But I figure that will correct itself in time. Nobody is approaching me yet wearing white coats and carrying a huge net....so I figure I must be doing okay, all things considered. Oh, and the mask...while weird at first, gets less and less bothersome because the radiation itself is over pretty quickly...so you don't spend a lot of time clamped to the table by that mask. I'll be following your progress here...but think you'll find it's all more a non-event than it is a big deal. Well, except for the hair loss again...although you never lost your hair with chemo, did you Di? Quote
schmaydee Posted December 8, 2004 Posted December 8, 2004 ...i didnt have the head aches.... they told me that after the last one (last fri) ....... i wouldnt really notice much of anything.....(good or bad).... then in about 2 weeks or so i would "start" to feel a "little" better...... 3 weeks ,a noticable improvment..... in a month i oughtta feel pretty good...... .....but i have been feeling worse everyday (tired,befuddled,depressed)....not real bad..... just awoke today might feel a little better.... the very first day i start feeling better i'm cool w/it.... i'm not sure why they gave me 20......i was expecting 12 or so.... seems like my onc thought it was gonna be 10-12..... but the rad-doc wanted to more..... maybe weaker ones over a longer period..... not sure how they do it...... .............s Quote
bacalice Posted December 8, 2004 Posted December 8, 2004 Addie: Sorry to hear the comparison to a baby's butt. I was hoping that I would be able to keep a bit of hair, but if treatment accomplishes its purpose then it is certainly worth the loss of hair. Schmaydee: I just had my second treatment and I am so tired and sleepy but I have been on edge anticipating treatment and barely sleeping. I am hopeful that we will all be feeling better soon. Dianne: I will report on Day 2 later today. I hope this day goes well for you. I am so tired but I will write and compare notes. Small Cell, Limited. Dx'd 05/06/04 Quote
Nancy B Posted December 8, 2004 Posted December 8, 2004 Hi to all - can I join too? I just finished 20 treatments. 3600 centigrays. The first week I did have headaches (brain swelling). I started on 8 mg of Decadron for a week and then gradually cut down. I really felt pretty good. I went for the treatment at 8:15 and then went to work. I am so not typical - I have actually lost some weight on the decadron (still need to lose alittle more). Still having some eye problems and balance problems, so back on the decadron for acouple of weeks and will have another brain MRI on Monday just to "make sure". This helps so much to hear from people that are doing this at the same time. Good luck to all of you. My prayers and wishes for little or no side effects. Oh, what little hair I had coming back from chemo went again with the radiation. I am told it will come back - I sure hope so - my ears get cold without hair! Love and hugs to you all, Nancy B Quote
SDianneB Posted December 8, 2004 Author Posted December 8, 2004 Nancy B -- whaddya mean can you join? Get on in here, girl! So far, no Decadron for me, but it's available if I need it. No headaches either (yet). I can't tell that I'm any sleepier than I usually am during the day. I just about stopped drinking coffee and soft drinks (1 cup of coffee in the morning, and 1 cup of decaf in the afternoon) so for a while, I was having withdrawal headaches and sleepiness from that. That's all gone now, but I can't tell any difference yet in how I feel during the day. Of course, it's only been 2 days, so there is plenty of time if I'm going to have side effects. Di Quote
schmaydee Posted December 8, 2004 Posted December 8, 2004 ...my onc-doc told me most folks dont dont start feeling it until the treatments are already over (if you get 10 of 'em i guess????)... whew..... i dont know how you lost weight on decadron..... (well, cause it doesnt effect you like it does me i guess)....i've stopped measuring my dietary intake in calories..... i use bushels now...... i'm WIRED-UP.... but i'm sleepy at the same time...... i'm really not sure "what" is doing "what" to me....really just taking a couple of sleeping pills at night and coming off the steroids.... ofcourse the pci thing..... ..........s Quote
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