mary757

Thanks so much, we haven't come down just yet. Sure makes her radiation burns easier to tolerate! Mary

Thank you, Thank you Please pinch me because I cannot believe it! One of my sisters says " I want to see the PET scan. I don't believe them" I say PET scan, sure but for tonight I am a believer in miracles. The best thing is that Mom is HAPPY! Not just surviving, tolerating, or in pain. That is incredible too since it has been a very long time. Mary

"Most extraordinary" are the words I heard today. Went with Mom to the pulmonologist. She finished 36 radiation treatments last week and rad onc said "see Dr R; he is your doctor now" Kind of confusing because Dr. R is our pulmonologist but not a cancer doc. SO . . . Mom's cancer is GONE; not smaller, not getting better but GONE as in can't see it anymore, doesn't show up on any scan/xray/etc!!! So of course she doesn't need a rad onc. And the rad onc describes this as "most extraordinary" Chief of Oncology told us on Jul 31 that there was NO chance of the cancer going away - NONE at all!! The best we could do was manage it since Mom couldn't do chemo or surgery - too small - only 77 pounds. And some of you know that her radiation by week 3 was horrific and I was at my wits end since she wouldn't eat and was losing weight. Well by week 4 she was improving; by week 7 she kicked out the housekeeper because she had enough energy to clean her own *!## house! No coughing; she's lifting little weights; her edema is gone for the first time in 8 months. She can walk around the block without assistance and without loss of breath so we knew she was getting better!! But who knew it was all gone!! They can't even find any sign of the MAC that she has had concurrent with the lung cancer. They're checking again for the MAC because it is so amazing that it is gone in 60 days. But for now - for the next day or week or month, I am going to revel in the words "most extraordinary".

Raeh: That was too funny! I totally understand but cannot make my hand do it!! Hope the rest of the day goes better. Mary

Blueeye: I can't imagine mixing work people and hospital people; that must be so difficult. RadOnc gave us Rx for Lidex. Doesn't cure it but takes the itch away. Techs just ask to have it wiped off before the zapping session. Then we reapply once Mom is done. Mary

Well you guys were right! Mom is proving to be tough. She has made it through #14 and her massive coughing miraculously just stopped. No easing up then stop just STOP. So she feels like something is working even tho she is tired all of the time. Weird tho, pul took chest xray last week and saw no change - we see him again on Tuesday. See rad onc on Monday for weekly update. Mom is committed to 5 weeks - she is not sure she can do more. Rash is still bad but not worse than a week ago. So a bit of hope, we'll see. Thanks for all of the good thoughts; I think they're working!!

Hi Peachy - I'm a caregiver for my Mom recently diagnosed. I echo much of what others have said above but must add that as big of a "burden" as it may be for us kids, I think it would be more difficult to find out that I was "sheltered" from the truth. Absolutely your choice to treat or not to treat. Mary

Little Update: Mom saw Onc and pul on Monday. Not sure how to process the results. Onc was not happy with her extensive reaction (skin) to the rad since yesterday was only day 10 of 25. Not happy with her weight loss. This was the first time seeing the Chief of Onc - very nice doc btw. He emphatically stated that she must eat and drink more regardless of how she felt! Mom saw the pul after the onc and he was even more disturbed by the weight loss, the skin reaction, and the diarrhea. When I told him we were at 10/25 he asked when radiology would do a CT scan to check progress. I told him not til after #25. He said "let's get a chest xray tomorrow". Also stopped one of the antibiotics for MAC. He is absolutely disturbed by the fact that she is eating 800 kcals on her best day. She was very upset that I spilled those beans but, hey, I wasn't going to let her say she was eating well. Bottom line is that onc and pul are going to discuss stopping treatment well aware that she will not resume it. And chemo and surgery are so out of the question. So today was absolutely horrible with the idea that the fight may be over before we've barely begun. We see the onc next Mon and the pul next Tue. Is a miracle possible?? Don't feel like a positive outcome is in the cards today. Just can't see it.

Thanks, Kate!!

Maryanne: You are right - Up until recently I would have described myself as level headed! But don't you know, that is part of my problem - This disease has not been easily quantified, the treatment is not definitive, and the patient's response is not universal. I'm a linear gal with an engineering background, I'm a problem solver by nature BUT I CANNOT SOLVE THIS ONE NO MATTER HOW MUCH I WANT TO!! And that, in a nutshell, is the very core of my frustration. I must believe that at some future time, I will no longer feel the pain as intensely, the setbacks so personally, and the need for answers so limiting. Mary

I had this w/Mom this week as well. She spent M-W coughing up blood specks but didn't say a word until Wed. Which means she lied to to the onc on Tues when he asked. Then Thu and today when I asked I think she lied when she said no. I called the Pulmonologist's office but they gave me the run around once I explained that she will NOT agree to ER. ( a whole other reason to have a crappy week) We see onc and pul on Monday so hoping we're ok til then. Was hoping to talk to onc nurse today at rad treatment but the rad specialists wanted to talk about my mom's case so I didn't get the chance. (and don't get me started on Mom wanting to get out of oncology ASAP on a Friday ) Good News, tho -- Finished Week 2 of Rad, sister is coming tomorrow to relieve me for a bit, and I managed to run the pesky beast this morning at 4am. Mary

Andrea: Thank you, so here is a weird question - I work as a consultant in my client's office and the people there know that my Mom is ill. But when I am at work I am in my work mode and I don't really like to talk about my mom's illness or treatment. It keeps me from getting weepy or anxious. So the people want to know how I am holding up so well and aren't I tough to keep coming to work? I don't feel that I am handling it well, just well enough, if you know what I mean. And I am a jet puff marshmallow and not tough at all. I come to work 'cause it allows me to leave the big C at least temporarily and cuz I need the $$. But, yeah, I go to meetings and design stuff and do the normal things I'm paid to do. Then when get-Mom-to-radiation time comes I leave and put on my happy aren't-we-having-fun face, you know?? So if I fake holding up does it mean that I really am??? Mary

Wondermom:I now have a permanent parking pass to the dark place. I can completely understand where you are. (perhaps we are parked in adjoining spaces) I have begun to identify the route there and am working on changing those triggers. So very sorry and maybe next time we can carpool? Mary

ztweb:Best wishes for some peace and quiet time before Monday. I'm new to this but I too feel as tho my skin was on inside out so all the nerves are on the outside. I wish I could say I understand but not yet - I can only imagine waiting for the results. Glad Geri can help you get back on track Mary

Thanks for the support! Today was a much better day on one hand since Mom was peppier and Rad didn't seem to drive her straight to the couch like yesterday. But Mom tells me that she has been coughing up blood for 3 days now. Not as much as in July but . . . if I call the doc he'll put her in hospital and she will NOT agree to that. So I'll monitor and see how we do tomorrow. We see pulmonologist and oncologist on Monday so the plan is to wait for now. Janehill: I appreciate the positive story you conveyed. My company has been fairly supportive but the client is something else. I've requested to move to a different client but as I am the head of the "team" I kinda have to stay for now. Client won't accept a replacement trjasMOM: I understand what you are saying and appreciate your words. I have to say that the people at rad have been great. They let me help her get situated on the table since she is so frail and then call me back as soon as they are done. I appreciate their consideration of Mom's feelings since she wants her family to help. I suspect before much longer they will be part of our family