SDianneB

Becky, we talked about that at work a few days ago. What a thought! I think they measure survival from the time you are pronounced "clear," right? If so, then that would be around the first of December. But, I think I'll use the first of the year for *my* date, and will have as my goal from here on out just living that year and making the best of it. All the angst I felt while the docs were wringing their hands and then to finally start (and now almost finish!) PCI can just fade into a distant memory now. In January, I have to check in with the Pulmonologist and the Oncologist, and will be on a regular checkup schedule of some kind. That is going to be the closest to "normal" I've been in a long time, and will begin what will be the new "normal" for me. Di

Addie -- nail/hammer/bang. About a year ago, I watched a Nightline episode about a woman in her 60s who had end stage uterine cancer. At the time, a dear friend of ours had the same thing at age 84, and was in the hospital literally on her death bed. This woman's doctor had a personal experience with cancer when his wife was diagnosed. He said it taught him about the need for a TEAM approach, so in his practice, he had incorporated counselors, surgeons, etc., so that each patient had benefit of all the opinions without having to go all over town to see different physicians in various specialties. This woman was documenting the last days of her life in the hands of this wonderful doctor, and the issues she and her husband faced. Near the end, she made the decision to stop all the chemo and any kind of treatment other than pallliative. While she was being interviewed, she looked great -- great hair, makeup, etc. Later, she took off the wig and makeup. She said that the hair/makeup look was her "living look," and taking it off was her "dying look." She said when she'd go to the grocery store and see someone she knew, they saw her living look. She said if they saw her dying look, they'd probably rush by her and try to avoid her at all cost. The people who can and do stick by those of us who need them are truly amazing. Especially those who can put aside their own ego and let the patient drive most of the time. I think of that woman's husband who loved to rub her bald head and tell her how much he loved her. Wow. Not long after I started posting here, I read of Ginny and her Earl, and could just about feel the caring and love through the computer monitor. I never lost that feeling, and found it almost unbearable myself to think of Ginny losing her Earl. Ultimately, I guess that's what happens with a lot of caregivers -- they lose their person. But people like Ginny never really lose -- because just look at all she had, and what she still has of Earl (and always will) to keep with her. Di

The 2nd weekend already! I remember last weekend, thinking this weekend would never come, and here it is already! Only 3 more treatments - yay! Tonight is our Christmas party for the gallery staff & some special friends. My usual task is making a huge bowl of fruit salad (the kind with Cool Whip & marshmallows, etc.). I was up early and got this done, and now am sitting here thinking that was quite an achievement, seeing as though I'm having my brain fried every day! Here's what I mean by that, knowing that there are so many people who have had way more (and higher dose) brain radiation than I -- It's remarkable to me that I made it through chemo, radiation, then chemo & radiation, and now more radiation. Just a mere 7 months ago, I didn't know if I'd be here for Christmas again. Not only am I here, but I'm having this life preserving PCI, and tolerating it quite well. I hopped up this morning and went right to the fruit salad -- a daunting task, because it's a really BIG bowl, and when you start pouring marshmallows and walnuts in, it gets really difficult to stir. I did it without missing a beat. It is a tradition -- and one I am so glad to still be able to carry out. Thanks to the advances made in medicine and the wonderful people who have taken part in my care this year, I was still here to make that giant fruit salad. When the new year begins, I will set my sights on being able to do that again for Christmas 2005. Tonight, we will gather with friends and co-workers, exchange silly gifts, eat lots of food, and laugh a lot. It will be wonderful and meaningful. But the true meaning of this day for me will be the fruit salad. Why? Because it was so normal. Di

Now Betty, you did that pity party thing all wrong. Next time, call ME!! Well, at least send me some chocolate??? Di

Why? Because it's a monster. It's a scourge. It must be eradicated. I am so very sorry that this is happening to you. You have such a beautiful family, and a beautiful spirit about you. Take care. Di

Alice, happy snoozes to you, sweet lady! Di

It's Friday!! YAY!! Happy dance ... And only 3 more treatments to go!! Today was a good ego day -- saw the doc, and he says I'm amazing! No headaches, just that constant mild pressure I feel. I went home early yesterday because I felt more "droopy" than usual, but after some rest and a good night's sleep, I woke up fresh and envigorated this a.m.! I really slept last night too -- was fighting sleep around 9:00 and finally gave it up and slept straight through until the alarm went off around 6:00 this a.m. Would have loved to have been able to throw the alarm clock on the floor and sleep some more! So, today's rant is, I think about caregivers, since I read a thread on that yesterday. I must warn you -- I'm not very politically correct. I tend to just say what's on my mind. And if I offend someone, so be it. I really don't care, because it is ridiculous and unreasonable for total strangers to have any expectation of not being offended by every other person on the planet at some point, IMO. So, here goes. I can't say I've been through this alone, because I haven't. But, when all is said and done, I live alone (well, I do have my sweet kitties that I couldn't do without) and it's up to me to take care of me. My sister lives next door, and is good for some things, but she's not very tough. The things she wants to do "for" me are really things that I think she does for herself. At first, I let her go with me to the doctor's appointments, but stopped that after a while. It became difficult, because she wanted to take control, and I didn't have time to ask what I wanted to know. So, I finally told her that she wasn't helpful to me in that way. Yes, her feelings were a little hurt, but I told her if she wanted to talk to the docs, she should just make her own appointment with them and have her own time, because I needed mine. And that was that. As to food, her housemate brought me groceries a few times after I got home from the hospital, and they both helped with getting prescriptions filled. I appreciated that a great deal, but was glad to be able to do it on my own when I could. As to friends? There was one friend who came to see me in the hospital, and then took me for my first visit to the Oncologist. After we had to wait 2 hours, I never felt right asking her to do that for me again, and didn't. Over time, she has more or less gone her own way though, as if I'm contagious or scary to her in some way, and I can't say that I blame her. Having sick friends can be a lot of trouble! I guess what I'm trying to say is that caregivers can be wonderful things. But as Becky pointed out in the other thread, they can also hamper things at times, albeit unknowingly. It's probably just the human in us, fighting to be in control, and as long as I'm capable, I plan on being in control of my health care. The companionship is probably the most important part of all this. I've lived alone just about my entire adult life, but am seldom ever "lonely," if that makes any sense. I know people who would just wilt away if they had to spend much time alone though. There may come a time when I need one. I'm more than happy to BE one if needed, but I hope that can be sensitive to the needs of the other person more than what I think is "best" for them. I certainly wouldn't want to look a gift horse in the face if I needed help at some point, but would also want to make sure I had a real giver of care -- meaning giver of real time because they want to. That would be a real treasure. Di

Must have something to do with the machine they use, because I've never had a problem getting my scans copied to a CD. Oh, and welcome, even though it sucks to have cancer and to have to be here. This is a great place, and someone may just have a better explanation for you. Di

Hey Pammie - welcome from a former Lubbockite! I grew up near Lubbock - in big Idalou -- know where that is? If you do, I'll be impressed! Sorry you have to be here, Pammie, but this is a great place to get support, and find out what goes on with others going through the same things as you. I never saw myself as much inclined to do the support group thing either, but after reading here for a few days, something about the place just said "come in and join us," so I did. And haven't stopped running my cyber mouth since! It's a real battle for sure, and I hope you can lean on us here to help you through it. Di

Cyndy & Tim -- how sorry I am that you have to go through this. I had a dear friend who had an attitude that sounds like Tim's -- he knew he had a limited time to live, but said he never wanted to be seen as "dying." So, that's how we saw him -- he was never "dying" -- always living. And live he did -- every minute. Try to enjoy your holidays and your family -- they are very precious. Di

Joanie, how wonderful!!! Keep that good news coming. And enjoy your holidays! Di

Way to go, Cheryl! This sounds good. You will keep us posted on the trial, right? Di

Well, enjoy your Christmas as best you can, and you know we'll be sending our thoughts and prayers your way that the next chemo knocks those spots outta the park. Sorry you have to go through this again, but hopeful that you will do well with the treatment. Di

Owie, Grace!! Be careful out there! And I hope that things get better for Bob -- and soon. Di

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

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

That's exactly what was on my discharge summary from the hospital -- one of the secondary diagnoses was SIADH. Thanks so much, Dr. Joe. It makes more sense to me now-- also why my fluid intake was restricted for a while until my sodium level came back up. Di

Ok, that started my day with a big laugh! That is terrific!!! I'm prepared to have a friend shave my head too if it looks icky when it falls out from the PCI, but will NOT take pictures! You're one brave soul!! Di

I didn't have the bleeding, but am prone to gum problems, and my diagnosis came right about the time I was due for a cleaning. The oncologist had me wait, of course, until chemo was done to avoid potential infection, but it worried me a great deal. Through the entire regimen of chemo and radiation, I used Listerine to try and help my gums make it through. They warned me that if I got sores in my mouth to stop the Listerine, but that never happened. When I was finally cleared to have my teeth cleaned, I had managed to maintain from the time before, except that my teeth had been stained badly by the antibiotics I'd taken while in the hospital. I'm grateful to have made it through all that with my gums in tolerable shape and to still have teeth! Di

Odd you post this today, because just this morning, I opened a closet to find some warm clothes, and the odor of cigarette smoke hit me in the face -- BAM! I hadn't opened that closet in months -- since probably March. And since I wasn't smoking in the house even when I was smoking, the odor had to have come from the clothes being packed up in that closet for so long with no air. It was amazing. I left it open to air them out, and will be washing them this weekend. Eeeuuu! I wouldn't know if there are harmful side effects, but it sure isn't pleasant, that's for sure. When I smoked, I used to spray myself with Febreeze and that seemed to help with the clothes. Now that I'm not smoking, I notice it more myself. Someone can walk down the sidewalk ahead of me after smoking, and I can still smell the residue. Strange. I bet that even if your co-worker couldn't smoke at all while at work, she would still have at least some of the odor on her clothes if she smokes at all before/after work. Di

Oh heck. If one is good, 2 is better, right?

bacalice -- just tell them about my new bumper sticker: "I'm not bashful, I'm from Nashville." !!! Of course, being in Music City, USA, we also have a bumper sticker that says: "Hank You." And "Loretta forever." Gotta love it! Glad you're having a good day. I think you can make it too. There is a goal out there that I'm reaching for with this, so it keeps me going. I try and not focus on the "what ifs" of side effects, and just pay attention to my body and what I'm feeling or not feeling. And you're correct -- I thank my mother and her good genes for every day I feel good, and for the days I've had so far when I've felt good in spite of chemo, radiation, chemo AND radiation, and now the PCI. The pulmonologist told me at the start of this that I'd have a much better go of it because I didn't have other complications -- no heart disease, no diabetes, etc. In other words, I could concentrate on battling the cancer and not have to worry about battling a lot of other things at the same time. I know I'm blessed. I know that many other people have a really hard time of it. I want them to know that I understand and appreciate that, and I'm here to be their cheerleader and their biggest admirer. Di

Cindi, that's wonderful. Dontcha love having that feeling of confidence? I sure do. And I wouldn't take a thing for the experience I've had with the Pulmonologist I see. They are lung experts -- for cancer, or any type of chronic pulmonary disease. I suspect oncologists are just there for the cancer, and may not be as up on other things that can be going on -- separate from or simultaneously with the cancer. I think the best is when you have a pulmonologist who works with the oncologist. When they are communicating, I think your chances of successful treatment go WAY up. That's just my 2 cents worth, but it's been my experience that having the pulmonologist to rely on has been invaluable. He also explains things to me in a way that I can understand. I'm so glad you have found a good one! Di

7 down, 5 to go. YAY! Amazingly, my wheeze (leftover from chest radiation) seems to be leaving. I said that once before, but when the damp weather set in, it came back. This time feels different -- like it's almost clear. I can breathe in REALLY deep and not hear it much. Even breathing in the cold air feels good -- stimulating in a way! I guess it's just good to be breathing deeply and feeling the air go in and out. The pressure is still there in my head, but still no headaches (knocking on wood). No nausea at all last night -- just lots of cuddling up with the kitties under the electric throw. Brrrr. Do you ever get the feeling that you shouldn't always be so happy about good news? Here's what I mean. When I had chest radiation, I showed up at around 8:00-8:15 every morning, and they usually had me in and out by 8:30. I wanted that same time for the PCI, but it wasn't available -- I got really close though, 8:30. I get there around 8:15 and normally have to wait a while. Yesterday and today though, I was called back the minute I walked in the door. It seems as though someone cancelled yesterday and today. So, today I made a comment about them being ahead of schedule, and the guy tech said something about a patient being taken out of treatment. Oh my. I know who it was. It was a man, looks to be in his 30s, was there just ahead of me every morning with his wife and 2 darling little girls -- looked to be 3 and 5 or so. He was in a wheelchair, and didn't look like he felt too well. So, my good fortune in getting in earlier meant that someone is having a bad time of it. I will say a little prayer for that family. He is way too young to have this awful disease and those sweet little girls are way too young to lose their dad. It's my hope that he's just having a bad spell, and will be back in treatment soon. I will gladly give up those 10 minutes if he can come back. Sometimes an opening will come because someone finished treatment. This wasn't one of those times. Once I get used to the faces in the waiting room, I want them ALL to be better -- to benefit from the treatment as I have. One of the techs was out today, and Kathy -- the one who does the simulator and set up the mask was filling in. She asked if I was ready for Christmas (which would be a total shock if I was, because I never am!). I told her that I was very glad to even be having Christmas again, as I wasn't sure 6 months ago if I would or not. The guy tech said we tend to take those things for granted, don't we. We surely do. I told them that it was in no small part due to their efforts that I'm still here and doing so well. I'm upright, working full time, feeling well, and am so very blessed. My Christmas card to those wonderful folks this year will be this: I'm sure they have burnout and eventually stop seeing their patients in the same way. But, when they feel that, I'd like for them to think of me and people like me who are having not only more of life, but quality of life because of their efforts. I'd like for them to know that in spite of the large numbers of people who don't do well, there are growing numbers of us who DO well. We have another Christmas, we adopt another pet from the shelter, we live our lives, and have smiles on our faces much of the time, because of those people who do this for us. May God bless us all, but especially those who work in and around health care and who are there to see that we get the best care possible. Di

bacalice -- there is no need for you to write a whole lot if you don't feel like it. Feel free to just read! Of course, we all love for you to write, if even to say hello -- just so we know you're ok. Glad your headache is better. And I like it best that you say you aren't going to give up. Take care of your sweet self. Di