SDianneB

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

Elaine -- I'm happy to do it. It's been discussed here since I've been around this forum, and I had so many questions and got so many wonderful responses that I thought it would be nice to share some of that. New people come here, and if they can read about it beforehand, I think it helps -- it sure helped me. As to the machines and nudity, (ahem) I am an avid fan of Buffy the Vampire Slayer. Yes, even at my age! I'd never seen it until the last few seasons, so watched it every chance i got to catch up. Now, I have it all on DVD so can watch it any time. When it first occurred to me that I was destined for many scans and tests, I started using that show and the characters when I'd visualize my way through the tests. It was like I had my own personal Scooby gang (the name of Buffy's buddy/helpers for those of you who haven't seen it!) inside me helping the chemo and radiation fight off the evil cancer cells! I'm going to mention this machine thing to the Rad. Onc. when I see him tomorrow. I used to work in a Radiology Dept. (in another lifetime) and was accustomed to the huge machinery, but I bet there are a lot of people out there who really freak the first time they see it, and then think it's going to be used on them! Yikes!! If they have techs who don't talk them through it, it can be really scary -- including the being naked part. Nice to see that I've not yet lost my marbles and that there are others out there with the same thoughts! (Or, maybe we've all lost our marbles together!) Di

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

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

That picture is a scream! That face reminded me of the late Jim Varney who had just about a rubber face!!! Di

YAY!! Those bleepin' scans - ugh! I'm with you on that. But what great news!! Now, you can enjoy your holiday with a little more peace of mind. Di

aaaahhhh ... that welcome sigh of relief! (Now, I guess we know that there is more than one meaning to the term "Waiting to exhale!") Enjoy your holidays! Di

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

Yeah, I saw that he'd lost -- I just wanted to give Addie a run for her money at playing Jeopardy to keep our brain cells churning! I thought we might stay on there at least as long as he did! (Fat chance!) Di

That *bleepin* mask - aarrgghh! I figure by the time these treatments are over, I will have the hang of it and it won't bother me, then time to stop. ha. One of the techs actually talked to me a little more this morning, mostly because I went in there blazin', and started talking and asking questions, and showed him no mercy. He had no choice but to talk back or to look like a fool. Anyway, I asked him if they have ever had patients with rings in their noses and eyebrows who had to undo all that for the mask. They'd never seen it, and it got them to talking about some of their more memorable cases. Aha -- I knew they could loosen up and talk a little if they just got a little nudge! This morning, I examined the apparatus that they use to fasten down the mask. Of course, I envision something like that old Stephen King story happening where the machines decide to take over. The big radiation machine would just keep going around and around, trying to fry me, while I was clamped down and couldn't escape with my head intact. So, today I made sure I knew what the clamps looked like so I could reach back and undo the thing and make my escape! (Seriously, I wonder if they realize how daunting those big machines can appear to a lay person? In a former life, I worked in a radiology department, so I'm used to them, but I can see how they would be intimidating to someone seeing them for the first time. Having techs that won't talk them through it certainly won't help either.) I think I figured out about the odor that some experience, except that this morning, I noticed it more as a taste than a smell. Taste & smell are SO intertwined, that it's probably the same thing, but just came across to me as a taste rather than an odor. 24 hours later, and I don't appear to be growing a 2nd head, hair feels intact, no headaches or anything strange to report, and I don't think I glow in the dark. Not yet anyway. I still feel great, and am thoroughly enjoying this one beautiful sunny day before it starts raining again. Ugh. Just wait. When this is all done, maybe you'll all see me and Addie on Jeopardy, trying to break that Ken guy's winning streak while exercising our fried brains! Di

If I may, I'd like to piggyback a question to this topic that I think is related. Elaine describes a "small area of collapsed lung." Is this what is referred to as atelectasis? Between the latest CT and PET scans I had, there has been a place at my right lower lobe that they weren't quite sure of, and I think have finally decided is scarring/radiation pneumonitis. (It was the site of the largest original tumor where I had pneumonia at the time I was diagnosed in early June 2004.) The Oncologist said atelectasis, and based on all the scans I've had, it's about the same as it's been all along, except that the latest PET scan showed no uptake there like on the first PET scan. Thanks in advance, Di

Jim, that's amazing! Wonderful news! I love hearing these things. Enjoy the steak dinner, but please don't have dessert, as I'm quite sure that at least one bite of everyone's dessert on the planet goes to my hips. Di

Shirl, in mid October, I had a pain like a "stitch in my side" as we call it down south! I was gasping for breath because it hurt to breathe, but otherwise I felt fine. My sister convinced me to call the doc, or actually she made the call because I was gasping and couldn't talk very well. I wound up in the ER to have it checked out, and felt really silly because it was nothing -- a pulled muscle we thought at the time, or more likely a cracked rib that is trying to heal and I moved the wrong way and set it off again. The point being that since I found out I have cancer, my life has to change. Where once I might put off getting something seen about, I know now that I no longer have that luxury. I have to find out why I have pain, if I have it, and if my body starts doing strange things, I have to pay attention. When I first read your post, I got the impression that you were a tad frightened, and that you want to know what's causing the pain, but are also a little hesitant to know because you're afraid of bad news. Close? If so, that's totally understandable, but we all know now that catching things early makes such a big difference. Take care. Hope you find out what this is soon, and that it's something minor. Di

Cheryl -- this sounds to me like one of those times when it's great to be last! The first time I met the wonderful Radiation Oncologist I see, he reminded me of all the people who came before me with this disease, and how their disease and treatments paved the way for us now, and how we will be doing the same for those who come after us. You are a true pioneer in that you are doing these things for your own survival, but are also providing valuable information so that someone else can benefit in the future. To paraphrase something Maya Angelou says: We can't say "I am" without first saying "They were." Di

Hello, Mercer, and welcome. This isn't the place you want to be, but it's the best place TO be for getting support from all the wonderful people here. I think many of us went through exactly what you described. The way I look at it, before I knew about the cancer (I call that "BC" - before cancer!) I didn't know how many days of life I'd have on this earth, and when I found out about the cancer, I still didn't. The one and only thing we know for sure about life is that we won't get out of it alive! Sounds like you have things in perspective, with good support at home and a great outlook -- all things in your favor. Di

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

Becky, a great idea! So, when I'm done with the PCI and they give me my mask, I'm going to fill it with coal and give it back. Ha. (KIDDING!)

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

Hi Wanda. This is scary as can be, for sure. There are several of us here with SCLC, and we'll gladly share our experiences with you if it will help. I'm just starting the preventive brain radiation (PCI) myself, and there are a few here who have just completed it, and some who are going through it now like me. We've "been there, done that," so don't ever hesitate to just say what you think and feel, and ask all the questions you want. Sorry you need a forum like this, but if you need one, this is the best there is. Di

(Making a note to NOT go and visit Becky until all the power tools are put away!) I think I've just come out from a little bout of that myself, Becky. I'd think just moving and all that goes with it is a LOT of stress in and of itself, not to mention having to deal with illness at the same time. It's like any other illness, yanno -- there is help for that too. Talking about it and writing about it helps, I think. Hang in there. We need your shiny personality here! Di

I love this! Great attitude! Welcome! No, I don't have any magic words for you, but you've come to the right place for support and help. Sorry you have to be here, but glad you found this forum. Di

Ok then. Those of us who are going through this at the same time, let's just have a bigger diary! Please, please share what you can when you can. Someone else will be along and it may help, plus they can add to it with their experiences. It sure has helped me many times to know as much as I can from those who have "been there, done that." Looking forward to sharing this diary with others! Di

There are too many people in the world who have cancer. I've noticed since I first started treatment in June of 2004 that the waiting rooms at the Oncologist's office, Radiation Oncologists's office, and the Cancer Center are way too full. Today at the Radiation Oncologist's office, there was a new crop of people from when I was there in August, and the place was more crowded this morning than it was in July/August when I was there every day. One man had cancer in his mouth. Ick. In his mid 50s. Another in his mid 30s had a strange tumor in his abdomen that is typically seen in children (Ewing's sarcoma). And there were more, and more coming off the elevator when I was leaving. Every time I read here about someone who needs thoughts and prayers, I think of these people I see and how they need them too. I bet you all notice them too, huh. Di

Day 0, since I've not started the actual treatments. I meet with the Radiation Oncologist who reviews my last PET scan results with me again. Really, really good results, and he's very impressed. He talks to me a while, again, about the PCI and why we do it, and says that from a 50% chance of recurrence in the brain, their results show a decrease to less than 10% after the PCI. Wow. He tells me that major hair loss may not occur, as it generally takes about 3 weeks for that to happen, and I'll be having 12, low dose treatments. He says I will probably have major thinning, but may not lose all my hair after all. Everyone is different. He isn't giving me steroids unless I need them. He says that relatively few of their patients need them, and if I have a problem with headaches, just let them know and he'll give me a prescription. He says just to take Ibuprofin or Tylenol if I have a headache, and if that doesn't do the trick, just let them know. (He's like me -- I'm all for the benefits of medication, but I don't want them unless I need them.) So, I go in for the mask. Yikes! Looks kinda like a fencing mask except for the waffle weave holes. The tech -- Kathy -- is the same one who did my chest radiation setup, and is terrific. She talked to me through it all, telling me what she's doing, how much longer, etc. It felt like she put a hot, wet pancake on my face at first! Then it began to harden and felt just really strange. It got a teency bit claustrophic for a minute, then she started talking to me again and it went away. All in all, it wasn't bad, and didn't last long -- 30 minutes max. I go in the morning at 8:30 for the first treatment. My guess is that I won't feel a thing, and probably won't for at least a few days. With the chest radiation, it was nice to have the weekends as a little break. Will see how this goes. This is a great place and a bunch of nice people where I'm going. Believe it or not, I actually missed going there every day when my chest radiation stopped! Di

My best to your mom! And tell her to try popsicles too -- they help a lot with the bad taste. (I swear, they are my new addiction!) I had a total of 4 rounds of chemo, 34 chest radiation treatments, and will start 12 PCI treatments tomorrow. After the 2nd round of chemo, they started the radiation, so I was having both for a while. I finished chemo at the end of August, and finished radiation on Sept. 9th. The Radiation Oncologist says they generally start PCI about a month after the chest radiation stops, but I had a spot on my lower right lobe that they were trying to figure out -- turned out to be a touch of radiation pneumonitis and scarring, as the cancer is now in remission. I'm going to try and keep sort of a diary here about my PCI from day to day, just to let people know what it was like. Others have posted about it too, and none so far that I've seen have experienced really awful side effects. Tell your mom she CAN do it -- especially with your love and support. This stuff can be SO scary, for sure. Di