SDianneB

Oh, gosh. Forgive me for assuming everyone knows all these terms! PCI means "prophylactic cranial irradiation" - it's brain radiation in a lower dose, and fewer treatments than WBR (whole brain radiation). It's given quite often to SCLC patients whose lungs/chest have been cleared of tumor after chemotherapy. Studies show a significant decrease in brain mets when PCI is done following chemo and chest radiation. (Drugs don't go through the brain like they do the rest of the body, so the PCI is more or less a preventive measure to sort of "clean up" the brain of any stray cells that may be lurking.) If you go to the "Ask the Experts" section, I bet you can get a lot better (and more) info than what I have. Di

We just settled my 91 year old (will be 92 in August!) mother into an assisted living facility. We thought we'd have to hogtie and drag her there, but she actually recognized that she could no longer live alone, and this was a very nice place to be. The one drawback was that she would have to stay in the nursing home section for a few months until Medicaid is approved before moving into her apartment. (It was the only way this place would guarantee her an apartment -- if she was already a resident.) Boy, I know all too well about having my buttons pushed! It's part of Mother 101 training, I guess - especially with daughters! My mother knows exactly how to play each one of us like a cheap fiddle, and get what she wants. Do we mind? Heck no. We are determined to let her live as comfortably as she can in this new place, and use the money from the sale of her house to make her last years really good ones. She can be a real pill to take care of, and I'm glad she's somewhere that she will be looked after and have 24/7 caregivers around her. Right off the bat, she didn't like her first roommate. She also figured out that if she'd go to the cafeteria for her meals it was better than waiting on them to bring it to her after it was cold. She met another woman there who didn't like her roommate either, so the two of them joined up and had the staff pull a switcheroo, and now they are roommates! It appears they may become good friends. She just won't stop! Hooray for all our moms who push the buttons and enrich our lives. Di

I had Carboplatin & Etoposide initially, and never lost my hair from the chemo. The PCI (radiation) got it though, and left me with a very unattractive Mohawk hairdo! It's coming back now, and seems to be about like it was before -- even about the same amount of gray! Once I'm done with the Topotecan regimen, if it's still growing, I'll probably have it evened out with the clippers once more, and then graduate from this red cap I wear every day! As to pain, I only had pain when I was first diagnosed. I had pneumonia and the tumor, and had fairly intense pain for several days. Once they began to treat the pneumonia and I started chemo and it started working on the tumor, the pain subsided. After a few months, I could lay on my right side again. Now, I have no pain whatsoever in my lungs,and all my scans & x-rays show continued improvement, even in the scarring that was created by the radiation. Di

I can only echo what everyone else says & feels -- so very touched by your post, and that you took some time to do it. Take time to grieve and then heal, and one day -- believe it or not -- the first thing to come to your face when you think about Dave will be a huge smile rather than tears. Right now, it's time for tears and grief from your loss, and we all grieve as well. Take care. Thinking about you all. Di

Becky, I kept seeing the topic of your post, and every time, I'd wonder why you were thanking us, when it's us who should be (and are) thanking David and his entire family for sharing their journey and battles with us, and for being really honest about their feelings and experiences. And then, there are the silly blonde pictures too -- what a hoot! So, thank you and David and Karen for all you've done and will continue to do for many of us who had the chance to come to know you through this forum. God bless you all. Di

How very, very sad. He's out of the pain and illness, but now we have to deal with the loss of him among us -- especially his family, and that's the very sad and tragic part. May God be with David's family during this difficult time. Di

Good update, Mark! We like those! Glad to hear you are having some good days in between all the chemo. It can be rough on some people, but well worth it in the long run, so hang in there and let them watch your blood counts and all that for you. Personally, I think rest helps a lot -- not necessarily sleeping, but just stopping to sit and be idle for an hour or so at least once a day. Fresh pineapple, popsicles, and many other things recommended by people here help keep the bad taste out of your mouth, and lots of other tricks they have learned along the way and are happy to share. Of course, nothing works as good as family and loved ones, and it sounds like you're getting plenty of that! My best wishes to you. Di

Me too, Beth. Me too. I'd like them all to have some relief, especially David who has been through so much. My prayers are in the mix as well. Di

Jen -- as always, it's so good to see a post from you. Glad you had some good days this time, even if not as many as I'd like you to have. Wish you could magically transport here and we could commiserate over feeling icky. In my case, a lot of it was mental I think. I had felt SO bad during all the gallbladder troubles that I had a hard time coming back from it. Given the anorexic component of this disease (which the Oncologist was kind enough to explain to me and my sister) I was just not eating, didn't want to, so there. Ttthhpppttt. That about sums up my attitude. Once I made myself start eating, I began to feel better and had more strength, and I have felt better this past 2 weeks than I have in a LONG time. I know you can get through this. I think you are one strong lady, and I have a lot of faith in your ability to keep on going the best way you know how. Hang in there. Will look forward to seeing more posts from you as you feel better. Take care. Di

Dean Carl, as always, you are in my thoughts. I'm glad you have help on the way to be more comfy. Early in the morning, I hear the birds outside just going to town -- each with its own particular melody. The cats are perched on the back of the sofa watching, and I just listen. Ever since I read the first post from you about the critters in your yard, it's hard for me to hear this cacophony of Top 40 bird tunes without thinking about you. Hang in there as best you can. Nothing wrong with asking for and getting help, yanno. (So sez one of those stubborn folks herself!) Many good thoughts and prayers to you all. Di

I'm not putting this in the grieving section, because it's more of a general topic. Someone I knew died just after midnight last night - LaVerne. I didn't know her all that well, but liked her a lot -- she was in her early 80s and loved to travel. Everytime someone got into the car to go somewhere, LaVerne was right there with them. She'd go on cruises, by herself or with friends, whatever. She just liked to go. For several years, LaVerne battled back pain that just wouldn't go away. The doctors tried everything, and finally began injecting her back with some kind of concoction (epidural) that seemed to alleviate the pain for a while. When they finally got around to doing the right tests, they found advanced liver cancer. Had it been found when she first complained of the back pain, she would have had a good chance of making it through. As it was, she only found out about this in early May, and now it's all over. I'm relieved that she is no longer in pain. She had excellent at-home hospice care with her family around her almost all of the time. And once again, I can't avoid the feeling that as advanced as medical science becomes, it is still operated by humans who screw up now and then. I hope and hope when I'm the patient that it doesn't happen to me. LaVerne was essentially at their mercy, giving them the benefit of the doubt and following doctor's order like a "good patient." Hopefully, her health care team will have learned from this and won't slough off the same kinds of complaints from other elderly people. She will be mourned and missed by her family, as well as the many friends she made over the years, and friends such as myself who didn't know her quite that well, but whose life was improved somewhat from having met her. Di

Addie: "Said it was hot down her way and she was trying to stay cool...and also asked about vision changes. I told her mine is a bit fuzzy. Don't know if it's the Topo specifically...or chemo in general...but I'm not getting my eyes checked until I'm off chemo for a while...cuz I'm afraid they'll continue to change. I have a feeling once she has a couple of cycles of Topo in her, that she will be feeling even better. It worked that way for me...to get rid of that unsettled tummy was HUGE. If Jen can get rid of that pain in her side...I know she'll feel much better." Amen to that. Jen -- if you read this, hang in there. I think it gets better. I truly do. I had that "unsettled" tummy myself, and had convinced myself it was another problem like the gallbladder that would have to be dealt with. Not so. It's just the way it is. Chemo/radiation just changes you -- in some way. We have it because it helps us, but we also pay a price for it -- some more than others. I hope your pain lessens and you get cooled off and feeling better REAL soon, Jen. I think about you often. Di

Ry, after just passing my first -- meaning that I'm still here after not knowing last year if I'd still be around -- the meaning to me was the obvious - YAY! Now, could I have imagined 5 years ago that I'd be celebrating surviving for one year? Nope. It is a mixed feeling -- at least it was for my first "anniversary," but I'll be happy to have it, I guess, since it means I'm still here - again! My father died on Dec. 12th - my brother's birthday. Every time that date approaches, I know it's time to wish my brother a happy BD, but I also think of my dad. And he died in 1975 -- will be 30 years ago this December. How time flies. So, those milestone dates just sort of stick with us in some way -- we each have our own reasons and motivations. I'll celebrate yours and John's milestone date, because I'm glad you are both around here while I am, and look forward to a continuing "relationship" in this forum with the both of you. Di

My experience with PCI was mucy like Addie's -- a little fatigue, and an ugly mohawk hairdo (!) was about it. Keep in mind that my goal from the outset was quite simple: to maximize my survival. I felt that there was a significant benefit to having the PCI as opposed to not having it. I asked a lot of questions and read a lot of studies before making my final decision, but must say that I was inclined to have it all along. I suppose that, like Addie, I wanted to know that I'd done all I could possibly do to further myself along in my goal. It isn't an easy decision -- not by any stretch of the imagination. My best wishes to you. Di

Tell that vet hubby of yours that I'm thrilled along with you all, and hope for better and better news to come. I'm thankful to him for his service to our country, more than he could ever know, and will pray that he gets a well deserved break with his health at this time in his life. My best to the both of you. Di

Just take a number for that "what if" game -- I think we all do it in one way or another. Mine used to come out in the form of strange dreams -- really strange! One was a Dr. Frankenstein clone, telling me I had a brain met, and he could tell that by looking at my feet. I would dream that I had to get to the cancer center really early, before they ran out of my chemo drugs. Stuff like that. I still have some anxiety before a test, but am learning to control it better than before, and will more than likely experience it every time a test comes up. Hang in there. We're all thinking about you and pulling for you. Di

Gosh - don't we learn that lesson fast? I'm with you -- I wonder how many are out there who have been dismissed by a physician only to show up later with advanced disease of some kind. Oh well. Back to those 2 magic words: second opinion My best to your friend. Di

Do we have a weekend update? I thought about you all over the weekend, and hope it went well. Di

The first oncologist I had became known to us as "Dr. Gloom & Doom." His demeanor was always negative -- even when I had great news from midway through the first chemo that I had over 50% shrinkage of the primary tumor. Every time he looked at me, it was as if he was ready to pass out the shovels and bury me. I stuck with him through the initial chemo, but during the radiation, I changed to another oncologist. She and I have had our ups and downs, but she is really in tune with what I want from treatment, what I don't want, my philosophies about this disease, etc. I've learned to just ask her things outright and she will give me a straight answer. I sometimes think that the battles we fight against the disease are less than those we have to fight against the system. I have a 91 year old mother who is in decent health for her age, and when she needs something even quite minor in terms of health care, you should see how they push her around from one doc to another -- because they think she will die and they don't want a death statistic to mar their record. (She's in a wonderful assisted living place now with a physician she really likes, and one who has worked wonders in only a week or so just by adjusting the medications that had been thrown at her over the past few months.) I'm sorry anyone has to experience this, but it just isn't like what you see on television. The good thing is that when it happens, we learn -- we learn that we are humans just like they are. Next time one tells you that you are "terminal," or won't live past "x" date, look him/her right in the eye and let him/her know you may very well outlive him/her. Best wishes to you. Di

I'm glad to know you're ok! Given some time, you'll be perking again as usual. Hang in there. We'll be here pulling for you every step of the way. Di

Awwww, Elaine. How I've missed your wit and intelligence. I truly understand the difficulty in posting sometimes -- can hardly drag myself upright to the computer, not from being weak or sick, but just not quite knowing how to find the right words. I wish you all the good things. And more cats in your life. (I had to put one of my older cats down right after I was diagnosed last year -- SO sad.) Take care of yourself. Di

Dave & Karen -- I feel awful that you have to go through this, but you seem to be in reality mode. That, of course, doesn't mean that you must trade hope and positive thoughts for reality, it just means you have a good dose of them all, IMO. I admire the way Dave squares off with this monster disease, and how the both of you as a family face it without wavering. You will all be in my thoughts & prayers. Hang in there. Di

This is a really GOOD thing. I recently had a bout of feeling lousy (after the ERCP) and was tired of trying to swallow a mouthful of pills every day. Once the oncologist finally explained the process that included an anorexic component, I figured I could control a great deal of that, so I got busy. Once I got started, things got better and better, and now I'm where I don't have to take all those meds -- just had to endure them while I helped myself come out of it. I still have to watch and make sure I eat right -- not to little, not too much, and the right things, but my weight loss finally tapered off, my blood counts are "perfectly normal" after a week of Topotecan, so I no longer have that helpless feeling. I feel now like I'm contributing something to help keep my counts from hitting bottom. Proactive sure feels better than sitting around waiting to see what's going to happen next, that's for sure! I only had the night sweats twice -- after the first dose of steroids I got a year ago when I had my first chemo treatment. Oh, and by the way -- send me that adorable baby, ok? Ha! She's a real doll. Di

Well, it's about time! (ducking!) Make mine a low fat chocolate milk for now, until I get through the Topotecan and back to a somewhat "normal" digestive pattern every day. Whatever "normal" is! Ha. You're a jewel. Di

Good for you, Frank. Hang in there! Give 'em heck! I'm like you -- if the good odds are only 1%, then I want to be in that 1%, and to heck with the majority numbers! I figure it's their job to help me get there too. No guarantees or promises, but they are physicians -- it is their JOB! Thanks for the update. We're always interested in you, yanno! Di