Benny boy

The spirometer really isn't a big deal (my mom had contests with me and my siblings with her's), imagine a clear inhaler that's really tall, or a pipe that is short and tall. You inhale from it moderately at a constant rate for as long as you can with one breath. A little ball goes up the tall part with your breath and kinda floats or stays at a marked location on the tall part. If people say it hurts, it's not because of the device itself. My mom had a talc procedure (pleurodesis...don't worry about it) and it made larger breaths painful for a few days. Trust me, smoking shouldn't be a part of your life after this, it's not like smoking when you have a sore throat, this is different. Also, you should try to realize that you don't want to smoke, even if you're addicted (I know because you've been posting about it). I've quit smoking, and for me it was about realizing that I'd be happier not smoking. You'll think that you'll lose a part of your life or it will become less fulfilling (cigarettes make good fake friends) You'll realize you've been brainwashed by them, and you actually won't miss anything about them after the first week (drinking can make it tougher). It's also important to be proud of quitting. Tell people often that you quit, and brag, it'll be like a special skill. As you've heard from some people here, the surgery will be a little painful afterwards, so just take the meds, do your breathing excercises (spirometer) with great regularity, grit your teeth, and know that you are a stronger person after the surgery than before. Infact, going through surgeries like this make you and everyone else on this board, stronger than most people on the planet. Marie, your courage, and every survivor's courage is humbling. Thinking of you, Ben

I'm as far from an expert as possible, but my mother's tumor was only 1.5cm and yet she had difficulty breathing. I don't know if this can only be caused by low oxygen absorbsion, however, is it possible that low oxygen intake can be caused by fluid? My mom had a small tumor and lots of fluid, only confirmed by x-ray. She had pleurodisis, and has been fine ever since with breathing. I'm totally lacking knowledge, but I'll throw anything out there if it could help. I'm sorry for your situation, Thinking of you, Ben

My mom, for the past few years, has talked about seeing a representational dove of her mother and grandmother, their favorite animal, and there have been strange times when a dove has flown by at an extremely convenient moment. I know she cares more about afterlife signs than a firm belief in the beyond. She just told me today, after we had a tearful talk about our beliefs in god, that I should always know that whenever I saw a dove, I should know it was her. Here's the crazy thing: I'm extremely empirical, I need evidence, I'm rational to a fault, and yet, I believed her. I'll never look at a white bird the same again. I believe, and love all of you for what you have written, Love, Ben

Maryanne. The funny thing is, for such a skeptical family, not only do we belong to a synagogue, but my parents have major rolls in it, and my dad is virtually the "man behind the curtain", our Rabbi's go to guy on everything (and he's a converted Catholic). We all just go through life our own way, and whatever God is out there, appreciates that. I know my mom just recently lit a Yartzeit candle for my grandmother's passing's anniversery, but she didn't know what prayer to say, and she felt badly about it. I told her that whatever is listening out there, doesn't care if you say a protocal prayer, Jewish, or Christian, or Hindu, etc... The real protocal is that whomever you are talking or praying to, knows that you have something to say, and it means something to you. Your response wasn't too lengthy, mine are always "too long". I got chills reading what you said. I do believe you, and I thank you for sharing, it is helpful. Thanks so much, Ben

Basically agree with everything already said here. It is a really confusing time, but all chemo treatments have a certain amount of rounds perscribed by the doctor. When those are done, we pray the results are good, and very often the patient starts gaining strength and mental capacities back faster than they lost them. Like people have said. Chemo is toxic to the good and bad cells. We know the good cells always come back when off the chemo. We're here for you.

This may be an extended reply, but it is as deeply caring and relieving as any of you can imagine. I have to admit, I live in the northeast, new jersey/nyc, and the jewish population here is the largest in the world, including Israel. We are good friends with our Rabbi, infact, he may be my dad's (maybe my mom's) best friend. I posted this question purposefully stating that I am Jewish because, as a religion, it may seem mysterious to people outside of highly Jewish areas and there are many Christians on this site. Judaism is just the early form of Christianity and we believe in the same god, minus the forms the Judaic god took in the year of Jesus' birth. I have read a lot of forum issues and often read about how it is necessary to believe in the strength of Christ, something which does not necessarily apply to me. What scared me the most was that I would end up getting evangelical non-understanding posts regarding religion. Instead, I have gotten great advice, and knowledge that the people on this site, no matter how evangelical they are, understand that we are all humans on this planet, dealing with human problems, and we struggle with the acceptance that death is the end of earthly life, and it is not just spiritual, but psychological. This is not superlative: I have never been more suprised and happy in my life for this coming reason: The people of this board are real people, and when they say, "we'll keep you in our thoughts", or ,"I wish I could hug you", they mean it...you mean it. Thank all of you for being who you are, Ben

My family is Jewish. We also happen to be a very analytical, sometimes skeptical, and usually religiously lazy family. I myself believe in a sort of "God", or entity, that allowed for the beginnings of the universe, at some point, allowing for matter, and universes, or this universe to evolve from whatever that original source was. (vague, I know). My father believes in some higher power, also not a traditional God, but his has something to do with finding a higher power as a recovering alcoholic. My mother believed for most of her life that "God" was a man with a white beard who lives on a throne in the clouds, but you could always tell that her belief was more of a child's mind proxy for something that she doesn't really think is there now that she's an adult. Today she said that she didn't have much strength left (she opted for more chemo instead of hospice, and this round, two days ago, will probably kill her, she's blind and can't get down more than 300 calories a day), and she said she's going to miss so much, and I asked her what she was going to miss. She said that she'll miss finding out who her children will fall in love with, she'll miss us kid's finding our total happiness, and that she'll miss my little brother's high-school graduation. Then (as my first two tears since my mother's diagnosis, one and a half years ago, rolled down my face)I asked her if she believed in the afterlife. She said that she has to, because she wants to see her mother, and that we'll get to see her later in heaven, but she won't recognize us because we'll be so much older. She also said that she'll be an angel on all of our shoulders. Like I said, I believe in my God on a very basic level, which precludes me from even trying to think about the afterlife, because it would take to much guessing and time (I don't have a strong faith outside of empirical things). However, I could hear in the way she was saying her stuff about the afterlife, that she wasn't truly convinced. It was like she wanted to force herself to believe, because she's scared. Here's my actual questions. For those of you caregivers out there who have been in a situation like this, where the person wants to believe in an afterlife, but probably doesn't; Do the patients begin to convince themselves of the afterlife the more they grapple with it because their mind makes them? Does a person without a clear belief in the afterlife at least to become at peace with death without a belief in afterlife? Do people ever reach the end while still scared? I always hear of people going in a contented state of mind, and nothing scares me more than my mother spending her remaining time scared and sad. Thanks as always, and I love all of you who read and respond. You're all in my thoughts. Ben

Thanks a lot everyone, I just thought I'd take a shot in the dark, knowing that I couldn't find any info on this on the internet. But the tips on how to manage are really great, so thanks all. Ben

Once again I'm going to apologize for posting another question without having posted responses to other posts. I know it's selfish, but I'm also slow to the draw and my answers to posts would inevitably come after so many solid responses, but know that I read many and pray for everyone who writes to the board. Also everyone here has my gratitude for reading any post and praying for anyone they read about. One thing my signature does not state is that my mom's brain mets are partially located on the optic nerves. She went blind in her right eye a couple of months ago, in a rapid progression of sight-loss. In the past few days she's experienced the same type of progression and the onc just revealed to her that she has abberations on the nerve to her left eye, even though he's known for a month. (he didn't say anything as per my mom's request, as she does not want to know anything bad unless it was going to become obvious). She will probably be blind by the time I wake up tomorrow morning, and I was just wondering if anyone here has experience with this. I know that optic nerve mets are much less common, and therefore I'd think many of you would not have knowledge of this problem, but if you have, I was wondering what your story has been so far. What's it like to take care of a pre-hospice (she refuses doctors suggestions to quit treatment) blind, patient? I know the question is vague, but if the there is anyone here who knows what path my mother and our family will travel, the advice would be invaluable. Thank you so much everybody, for being who you are, reading, writing, praying, and consoling, friends. This is truly a wonderful place, Thanks again, Ben

I also think number 10 is disputable. Theoretically the earth's rotation should effect drain water that way, but it's actually random on such a small scale. The "coriolis effect" really applies to things as large as hurricanes. However, that's an awesome list that I'll show people. I can't tell you how many tires I've changed, and yet I just had no idea how many lugnuts there were...great list.

she takes fentany lollipops for her shingles so that in itself will make her dizzy, however, her dizziness has occured well before she was given this medication, so my question only has to do with normal weight/muscle loss and whether this is common for underweight chemo patients.

Hi, I've been a member of this site for about a year and a half, and I used to have the name "Ben Nyc". I don't live there anymore, so I changed it. Secondly, I'm sorry that I've been selfish and only posted a couple of questions as opposed to responses. Perhaps now I'll troll the boards looking for something I can help out with now that I have experience. My question is upcoming and about dizziness, but I'll give a small history first. My mom has been told she can stop fighting, but she refuses, which is fine, but she also continues to do things that most people with that diagnosis would not do, such as walk. When I went to my parents house today I found her very slowly trying to cut vegetables for a dinner that she insisted that she would cook for herself (i ended up cooking it). I admire her fortitude and respect it. But her inability to do things efficiently or safely have become a bit of an overt joke in our house that we all smile and chuckle at(including my mom). When she starts doing a little dance to music, or insists on excercising by taking a trip up and down the steps, or getting herself a drink from the fridge instead of letting someone else do it, we watch her and help her. She does not fight or anything like you might find in an archetypal cancer movie, she just lived her life doing things, and continues to do them without asking for permission, and if you ask her if she'd like help, she kind of snaps out of her task and realizes that "yes I'd like a little help, thanks guy. you're so nice". So, clearly she's not putting up a huge struggle to keep her old life, she just fights to keep her life. The thing is, she's lost a lot of weight, she's about 100 after weighing about 140 (5'1") and she's fallen once badly, and today I caught her (accidentally) from falling face first into a chair. I've asked her what that's about and she says that she just doesn't have the balance she once had. Has anyone else experienced a patient that fought so hard that they continued to do tasks without a second thought, when they should be completely bedridden, and if so, are they generally "dizzy". Thanks for any help, this is just curiosity not really dire.

I don't know if anyone remembers my last post (well over a month ago), but I wanted to update my mom's, and my own situation, just to get a little feedback. First, my mom was diagnosed July 11 with nsclc and cancer in her fluid (IIIB). After a subsequent mri and pet scan, we found out that she has brain mets and no sign of bone mets, even though the drs were sure she had it in her bones (yay). Anyway, she's been doing carbo-taxol chemo since the first week after diagnosis, she's on iressa, zometa, and other stuff, just finished whole brain radiation, and is not scheduled for any more tests for the next few weeks. Some good things. Her hair was getting thinner, and when it got thin enough that she was afraid it was going to fall out, she decided to go ahead and shave it. Turns out she has a full head of stuble! She never lost her hair, that scares some people in my family, because they think that means the chemo isn't working. I am not a doctor or a fortune-teller, so I don't try to figure it out. On that note, she has one of those good bald heads, so we all joke about how maybe it can just be her new look. The other good thing is that I happen to be good friends with a lot of sons of doctors. My best friend's dad happens to be the head of stereotactic radio surgery at overlook hospital in new jersey, and he's the only guy for hundreds of miles that uses "cyber-knife", which I guess means he won't have to screw the brace onto her head. He's also calling his "boy's" for advice at Mass General and Sloan, just to make my mom feel better, (even though he tells me that it's not really necessary). Bad things. She now gets tired quicker than a cat on quaaludes. She'll anounce to everyone that she's tired, and we'll turn our head to look at the couch and she's passed out. I don't know how frightened I am by that, but I do hear my dad always talking about how quickly things can deteriorate. So I guess if I had a question it would be something like this: I never look at the statistics, because I don't see the sense in bracing myself for something that will happen anyway. All I ever know is that my mom will be alive tomorrow and she will be alive next wednesday, and beyond that isn't worth my time guessing. However, with people telling me that she could start going downhill so fast, should I be preparing myself for the possibility of her not being here "next wednesday"? I'm not in denial about the cancer, it's just that everyone else has turned it into a life consuming spectre. I'm still here hanging out with my mom, what's the sense of me looking at her on the couch and putting her foot in a grave? I'll treat her as a person with cancer in situations that call for it, but not when people feel like we need to be solemn. Thanks for getting all the way through this. Oh yeah, I think my dad is starting to drink (hiding it, innappropriate times, more than normal), for obvious reasons. I can't tell my mom about this, despite what I just said about treating her normally. Anyone ever have a similar situation?

Once again, I'm quasi-new to this forum, but I'm overjoyed with the amount of people that have already responded to my first post about my mom. I have followed most of your advice about learning as much as I can and talking to the onc. as well, (by the way, he's a great guy, I couldn't ask for a better doctor for my mom). The problem is that I live in NYC and my mom and Dad live in North NJ (35mi. away). I've been in New York keeping contact with them, and I started to become complacent with what my dad was telling me about my mom, and my negative feelings had started to subside as I spent more time away from them. However, my family was supposed to go visit my younger, 15 year-old, brother at camp, and we were all going to pitch in telling him about what the situation is right now. Unfortunately, my mom just had her first chemo cocktail this thursday, and so I am staying home to take care of her, and my dad is going to my brother's camp to explain the news, because it wouldn't work visa versa. I don't know why I gave that long prelude, but if you read my first post, you would see that I had not noticed much wrong with my mom. However, apparently the chemo has wiped her out. Her breathing is much more labored than before, and her caughing fits are epic. I knew she would probably never be able to go visit my brother at camp, but I didn't expect her to become a semi-invalid. Has anyone had this experience? I mean, I know chemo causes all kinds of strange side-effects, but all that she's experiencing is a worse version of her previously mild lung cancer... I'm sorry for venting...respond or not, I just needed to get this out. Thanks, Ben B

I honestly can't say how grateful I am for all of the responses, (all quite long and detailed, which is good), and support for someone who just signed up last night. I am too fresh in this whole experience to give advice to anyone else, so I'm still in that selfish phase. However, I intend to be a part of this group for a long time no matter what comes, and maybe one day, some of you can turn to me as I learn more... Not just about the disease, but also about how it affects the family and beyond. Regards Ben PS. I normally don't talk so cheezy or cliched, but I'm in a haze right now.

Dear Jane, I have only just found this site and I have already heard a lot about Alan just because everyone here seems to be so supportive of everyone else. Thank you for your information. I have always cherished the time I've had with my wonderful mom, but now I will take extra care to make sure I show more love, and hopefully I will be able to do so for another 23 years. Ben

Thank you Jana and Elaine for your responses. I am glad that both of you, and everybody here, are concerned not only for their own well-being, but are willing to give time to others. My heart goes out to both of you as well.

I'm a 23 year old guy, older and younger brother, sensitive person, party animal, and the son of two people whom I consider my best friends. I am still living a life that doesn't face many of the realities of getting older. Never once have I had to experience the trials and tribulations of cancer, even in my distant family and friends. I, along with my mother, father and older brother found out that my mom has lung cancer, which was discovered in her pleural fluid (meaning at least stage IIIb). Of course the four of us have been totally shocked and confused. My younger sister and brother (aged 20 & 15 respectively) have not heard the news because the brother is at camp and my sister is studying abroad in Ireland. Regardless of those facts, I have something else that's bothering me. My mom does not want to know the results of her PET scan from last Thursday. However, the Onc. called my father, to tell him the results, and warned him that my mother would have to learn of the results this Thursday at her first Chemo session (Taxol/Carbo, Zometa). My Dad found out about the Zometa because the doctor told him that there is probably metastasis in the bones. Later my Dad asked me if I had researched anything about lung cancer spreading to the bones. I had researched and told him that I thought it probably isn't that bad because she hadn't felt any symptoms. My dad then confided in me that she has started to have really bad pain in her ribs and hasn't wanted to tell anyone. That news just floored me. My dad is only fifty, my mom only five years his senior and she hasn't smoked in 20 years (she has NSCLC adenocarcinoma). They don't believe that her cancer was caused by smoking. Anyway, my question is what kind of symptoms can I expect. I just do better when I know what may be coming. She is short of breath sometimes and has little caughing fits, but overall her vitality and demeanor seem great, although she sometimes breaks down crying, and being that she is small, she looks like a helpless 10 year-old (makes me feel like I'm watching someone drowning and can only hold their hand, but not pull them out). I have not yet felt totally sad, but rather angry or in denial and I am confused. Basically I want to know what kind of symptoms can I expect when the disease progresses symptomatically, how fast can it happen, and whatever else you know. I am sorry for rambling so much, but I just found this site, and at least venting to people who understand is important to me, whether or not they respond. Thank you for reading, Ben