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louise

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  1. Hi, My friend was diagnosed with SCLC w/mets to liver the same day as your dad, he finished 4 rounds of VP 16 and cisplatin and then had a cat scan with similar results. the tumor was almost gone, and the liver mets were ? non existant... his blood work is slowly getting lower but not low enough to worry about so far and he's had no nausea at all. His appetite is good, although he does get progressively a bit more tired after each treatment. His liver lab studies have never been abnormal through all this. His onc doctor said after the cat scan she'd do one more chemo round, then scan again in two weeks. which is what we are waiting for now, then do his 6th round of chemo. We were wondering what the plan was after that too and were told he'd be watched by having serial x rays every few months and cat scans inbetween or something. (i had all i could do not to scream that the stuff grows like wild fire) we were also told that they'd go by symptoms.. (there aren't any sometimes....!) They said they don't do "all" cat scans... hmm... sounds blue cross-ish to me. My friend has tribal insurance that covers everything and anything that blue cross doesn't pay so we are going to look into seeing just exactly what crap this is.... this monitoring costing too much. I don't think they could never monitor him as much as I'd like them to. And since he's doing so well with them chemo (although he'd kick me) i figured why not do one more treatment just to be sure...? I'll be sitting up nights staring at him like i did when i had my preemie. I think maybe your worries are normal, cuz i'm feeling this too. I do see people saying to trust the doctors, I am envious of those who have doctors they feel they can trust, I dont' know one. I can't do that. It isn't that i'm a control freak, Too many things have happened so far with my family and my friend because I trusted the medical community. I have to ask questions and insist on answers. If my friend had had the x-rays i knew he needed months sooner who knows where he'd be today. But the doctors refused. So I'm going to have a hard time with the monitoring thing. Even if they are doing the right thing. *sigh* I am glad I have this board, cuz things were so black w hen this started.
  2. louise

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    Thanks all. That's why I'm glad this board is here. I can wonder and ask stuff and do all my senseless blabbing here. Instead of in front of him. I am telling myself redundantly that nobody knows what will come tomorrow, with or without cancer so I should knock it off, and it's working. The thoughts don't enter my mind nearly as often as they did when this all started. Life is different, but vastly improved over the initial bomb when this started. It all makes me wonder why we lived our lives waiting for "this friday, and next week, and "our vacation" instead of enjoying right now. because right now seems to be so good. My best friend is also dying of breast cancer with mets to bone. I was afraid that I wouldn't know what to say to her as we talked at this stage, she's real bad. But we've been friends too long to be at a loss for words. I certainly don't want to see her go, but I sure don't want to see her live like she's living either. So it's a mixed thing. A sad thing though because it didn't have to be this way, she had a lumpectomy that was supposed to be nothing, no mention of mastectomy, radiation, chemo, was told it was okay and sent on her merry way, only to find 2 years later after pneumonia they found on an x-ray she was full of bone cancer. (?) What a mess. I"m feeling a lot better these days... it's just been a lot for me and i suppose this post is sounding like it's all about me, but between my boyfriend and my best friend with the cancer, last december the young man i took care of forever who was a quadraplegic died of septicemia, in may my aunt betty who i'd been close to since a child died (of old age...but...) and my step dad of 30 years died of heart failure a month ago today. Last year I had a hysterectomy and they managed to stitch my bladder in there so I was off work with a big hole in my bladder for half the year... so the last 18 months have been difficult, and no i'm not makin' this up. BUT I"M FEELING MORE POSITIVE i really am.... And it is worth mentioning, that my aunt betty, had a huge sarcoma in her hip area in 1978 and we were told she would not survive 6 weeks. So she outlived that by 35 years after they treated her with cobalt. i've made it about 48 hours with NO tears... and counting Louise
  3. louise

    News

    I posted once in the introduction area. My s/o was diagnosed with sclc 5/1/03 with mets to liver, and refused to allow the onc md to tell him if it had spread any further and flat out looked at me and said, this is no problem, He's finished his 3rd round of vp16 and platinol, gained the 20 lbs he'd lost prior to starting his chemo, his blood work is still near normal, he's had no nausea or vomiting. A few days of sore mouth and some mood stuff from too abrupt of a stop of the decadron which is going to be changed starting this next round. He is a little tired but not too tired to attend a party and help out to what amounted to nearly 20 hours, .. ANYWAYY...... i'm a bundle of nerves.... still.. he had his first scan since diagnosis last week. we were pretty positive the chemo was doing something since we figured he would be a lot sicker if it wasn't and the doctor said the same. his tumor is /was fist sized and up against the trachea, he saw the oncologist for the result of the cat scan yesterday and she said the tumor is almost gone.. she said she's amazed at how well he's responded to the treatment....aand she may scan sooner than she planned to this next time....and he may not need as many treatments as she thought either... naturally we were happy, my s/o just seemed to be "i told ya' (although he was teary eyed at first) but i still feel like somebody has their hands on that carpet ready to rip it out from under us. the old "if it's too good to be true it probably is" thing... but i won't tell him that because he won't even let me use words like "if"... it's when this cancer is gone... which of course i think is his right and probably what's making his attitude so strong and positive. i think i'm going nuts the thing is, the only other things that could have been better i suppose at that appointment were that the cancer was gone, or they had his cat scan mixed up with someone elses initially and he never had cancer in the first place, which we know won't happen. he told me i have to relax.... i realize i probably won't ever really be able to do that totally again, ask me to do that in 20 years maybe... see what life is like then. because life won't ever really be the same, these terms came into our vocabulary that weren't there in april, tense and scary things are happening and have happened and will continue... today i'll just enjoy dinner with him and look at those big doe eyes...
  4. naturally i cried through each post. Thank you for all your help. My very first patient when i got out of nursing school had small cell lung cancer and didn't last more than two weeks and it was an inhumane awful few weeks. I had tried to look up statistics but knew before i got too far i had no business looking as things weren't helping me out there either because they don't say good things about prognosis in the medical places. I have found in here there are good things happening to people with lung cancer now that didn't happen before. My friend who has cancer says... look at the hockey statistics.. shots on goal mean nothing... it's the one that makes it into the net... I'm hoping that how good he feels and how well this chemo is going, and his attitude is going to go far in getting him through this. He keeps telling me not to be scared. I keep trying not to be. But when one loves someone so much how can I not be? I will say we have said more things to each other that we probably would have never said... and talked about more things that we ever have in the last 8 weeks. And suddenly so many things that used to be important are sooooooooo very minor. I just keep thinking he HAS to be one of the people that survives this. I won't accept it any other way. But the tears still fall. Because everybody wants their family member to survive this and they can't all can they?
  5. My special significant other person after 2 bouts of pneumonia and reasurrances that it was nothing, was diagnosed with a huge small cell tumor on may 1st 2003. I don't remember the next two weeks much other than being pretty hysterical and missing work. The remainder of the time i've just been doing my best to put one foot in front of the other and plug along trying to get thru this. They saw some cancer on his liver from the cat scan of his chest and did full body scans of bone and body, then brain. He told them he didn't want to know the results good or bad since he is feeling real good it didn't matter to him where the cancer was. His oncologist said if it was bad news he treatment would be the same. I am down to crying about 7 or 8 times a day ... which is much less. I'm a lot better when i am at work.. it starts when i leave the building to go home. I also have to be okay when I am around him, as he is doing so WELL with this. He tells me don't be afraid, he has good feelings about this, he's going to be fine. And he is fine from all signs so far. He hasn't had a bit of nausea, no sore mouth, very little as far as fatigue, no weight loss, actually weight gain, a really great appetite. All signs say his tumor is shrinking because his breathing has improved very greatly. He just finished his third round of vp16 and platinol. They are going to scan again and then do 3 more rounds of the same chemo. He is jet skiing, mowing the grass, doing things within reason, but claims he feels better now than he did a year ago. Which could very well be. I'm trying to appreciate every single minute i'm with him. It's hard not to try and smother him. It's hard not to try and think of that stupid aerosmith song... i don't wanna fall asleep cuz i don't want to miss a thing... I"m having such an awful time with this. I keep thinking to myself he has to be that one statistic that makes it, there's no other thing i'll accept or I won't survive either. He retired this year and got sick right afterwards. I am soooooooooo angry. How on earth could this have happened? I"m a nurse and have been for 20 years. I wish i didn't know a thing. I'm tired of crying. It is better than it was May 1. But it sure is the most miserable hateful experience. I have such morbid thoughts. The other day I had to reef the wheel of my 4 wheel drive, it's one of those tippy varieties.. and i could feel it rocking back an forth... and quickly a thought went thru my head that i hoped i rolled it ... to avoid having to go thru losing him if that's what it ended up being. Then i was mad at myself because he thinks everybody has him already dead. I can't deal with this. am i nuts? Louise tears streaming down my face while typing
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