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

tjrasmom and KatieB:Ok, I cannot complain; I have it so much easier than either of you I have just 1 job, no school, and no kids to explain why I am not up to their activities. Just a big dog who is still waiting for me to get up and run at 4 am like usual. Kinda tough to get up this week but tomorrow is another day. dchurchi: You are right I'm a total newbie and Dad went very quickly - 72 hours - so I have NO experience. It doesn't help that the professionals are having a bit of trouble with the actual dx. They can't biopsy the actual tumor so the bronchoscopy only biopsied a couple of places along the bronchus and every appointment there is some new complication or possibility. We saw the rad onc today and he is not certain that Mom will make it thru the 25 treatments without a break. He is making noise about a two week break and then resuming. This goes along with my gut feeling that she is just super fatigued and we're only at treatment #6. Yikes!!! My backup help (my sister) is riding to the rescue this weekend. She and I had a huge discussion about what is what and how we can keep Mom in the game. Looks like we can double team for a few weeks anyway. Doesn't solve the absolute KNUCKLE-heads at work. "We MUST have a meeting to discuss this issue" right at the I-gotta-get-Mom-to-radiation point to my day. We'll have that meeting, buster, right after I take care of some real business. Like tomorrow or next week or . . .

OK, we've done the first few loops of the rollercoaster - Dx, discuss options,start rad -- and from all you've posted, there is no saying how long this ride will be. SO . . . I'm flat out of sick/vacation time but need to get Mom to the Rad treatments and the doc visits. . . The client is very irritated that he's not my #1 priority . . . I'm really really irritated that he even considers being irritated . . The company says they support me but then want me to take on 3 more employees and 2 more jobsites . . . How on earth do I do this with any dignity??? I'm a split personality now - the cancer side and the worker side. So I get off one phone with a doctor/oncologist/someother healthcare provider to answer the other phone regarding work related stuff. It is a miracle that I can speak English to any of them. So when does "normal" return - even a new normal?? And when do I care again about those critical issues that were so important pre-Dx? Cause right now whether the client wants tile or concrete floors in his building really doesn't matter at all; or whether his schedule is off by a couple of days due to a late delivery - "Get over it!!" And what do I do with this dark funk that I dive into as soon as I leave the role of cheerleader, coach, cook, problem solver, etc?? So how does anyone else handle all of these issues without going completely mad?? Thanks, Mary

Thanks for the suggestions - I have some new ideas to try now. Also Bristol Meyers called back this morning - almost fell out of my chair - and they have confirmed that Megace liquid is gluten free. I will take that on faith right now because I need Mom to increase her appetite. She hasn't started it but the bottle came out of the box. THAT is progress. Thanks a bunch Mary

Thanks for the support. She refuses to drink Ensure and won't take the body building supplements. Doc gave her Rx for Megace but won't take that because of the alcohol content. (It might have grain alcohol which sets off her celiac.) Have a message in to Bristol Meyer Squibb to confirm type of alcohol in it. Refuses the Megace pill because she is "already taking too many pills". Doc considered Marinol but then changed his mind on day 1. Haven't questioned it since we had the Megace.

Posted my general info on Intro's thread. Mom's got NSCLC that is acting like SCLC as far as growth and spreading. She has active MAC as well so they can't tell from the PET scan what is infection and what is cancer except for the 4.77 cm mass in the RULobe is definitely cancer. Mom just finished 1st week of radiation and is beyond exhausted. Fed her a good dinner and off to bed! But she is only 77# dripping wet!! She is on massive antibiotics for the MAC which is causing some GI problems but she is feeling better. She also has celiac sprue which means she has to be so careful with what she eats or she will be back down to 62# before we know it. (where she was when she was diagnosed w/celiac 10 yrs ago) What are our chances of survival of the loss of appetite?? She is not on chemo yet; the docs have requested she gain 10#'s. She can do 1400 calories in a day and then is down to 800 the next so how do we gain weight?? And this is with no side effects yet. Totally terrified that she'll not make it thru the first round of treatment. Praying for a miracle

We have finished week 1 of radiation, yea! I was able to speak with the doctor to get clarification on what was going on. Mom has non-small cell lung cancer that is acting like small cell lung cancer and that is the confusion. It is growing very quickly but the pathology shows that it should not grow so fast. It appears to have spread but they are trying to treat the largest tumor first to stop the coughing up of blood. They will then re-evaluate what it is she has. As always Mom is breaking all of the rules

Thanks to all: Adrian you may be right - the doc's may have mixed up the lexicon or I may have heard it wrong. I'll confirm since the information that I have shows both - the doc's text references the small cell yet the pathology references the other words and a lot of other words as well. Radiation started yesterday so we will see how that goes. Many thanks - Mary

My mother was diagnosed on Tuesday 7/31 with small cell lung cancer. The oncologist staged it as II or III. She has a 4.77 cm mass on upper right lobe and bronchoscopy 10 days ago shows adenocarcinoma and squamous cells. Radiation treatment starts tomorrow and continues for 7 weeks daily. Concern is the coughing up of blood that precipitated the hospital stay. A complicating factor is she has also been diagnosed with mycobacterial avium intercellularae (MAI). She is on 3 antibiotics since last Friday and does say she is feeling a bit better. The chain of events - Late April 07 Mom to GP (MY doc) to check out wrist swelling. Get hand surgeon referral. May 07 see hand surgeon, suspects carpal tunnel, after nerve tests dx is confirmed. Schedule surgery for 6/19. 6/1 go to GP to get cleared for surgery, requests ekg, chest xray, bloodwork etc. 6/11 final clearance for surgery. Chest xray abnormal, CT scan 6/12, still abnormal so GP cancels surgery and schedules pulmonologist on 6/15. Pul requests PFD and PET scan for the following week. Not sure of dx but discusses silicosis and mesothelioma. PFD comes out better than he thought, PET scan is showing hot area of tumor in right upper lobe, nodules in both right and left lower lobes, and adrenals on right. Pul wants bronchoscopy so sched simultaneous w/carpal surg for 7/10. Pul is sick so only carpal surg done on 7/10. Pul calls to resched for 6/26 but mom is coughing up blood by 6/24. Admit to hospital for emer bronch and here we are. She has deteriorated very quickly in just 6 weeks or so. Can't make it to the end of the drive without catching her breath. So I'm moving back home for a period of time. We're on the cancer rollercoaster so I'm hanging on for dear life.