daughter1974

Shrimp, I know what you mean, and yet at the same time I still look forward to getting to know your Dad through the memories you share with us! Even though he isn't with you physically anymore, there's still so much that WE don't know about him. We first met you and heard about him during such a low, scary time. When it starts feeling right to you, please share with us some things about him from the good times. I think one of the neat things about this site is that everyone seems so welcome (and wanted!), no matter where they are in the path of what originally brought them here. Amy

My Dad's treatments are only about a ten-minute drive for him too (they'd be even less from my place). When we found the doctor at the Univ. of Minnesota, we reflected on how fortunate we were to be SO close to such great care. Meanwhile my uncle was in another major hospital (5 minutes from my house) for another cancer. Now, a second uncle is in ANOTHER major hospital also 5 minutes from my house for yet another reason. That's a heck of a lot of hospital use in one month, and yet I've been thinking about how fortunate we are to have this much medical care in one area. What percentage of the world's population is so fortunate?

Shrimp, I agree with the last few posts - please continue to post when you feel like it. I have been reading your posts, as well as all the responses, and it doesn't bring me down at all. Here's why. I can tell that you are down (understandably), and you are honest with your emotions, and I appreciate that alone. It's nice to know that other people feel that way too. The uplifting part comes when I read everyone rallying around you, and I know that when I need it (as I did just a few weeks ago), they will rally around me too! I've only been on here one month, but I am confident that this outstanding crew will rally, and I bet many of them feel good getting to help others in their times of need. We all have those times, so please continue to share your feelings with us anytime you want. You can PM me anytime too - I'm on the computer often. Thinking of you, Amy

Kaytie, I join a long list of people who can relate - so possibly unnecessary to chime in, but the comparisons are just too great. I'm 34 - too young to be facing the lung cancer diagnosis of a 62-year-old father, in my opinion. Of course, I say that knowing full well there are too many people who 1. never got to have half the relationship with their fathers that I have had with mine, and 2. know that many people have lost parents at younger ages. My Dad retired as of a couple years ago, and is absolutely living up his retirement. He appears so very, very healthy. This isn't supposed to happen to US! My parents are supposed to have a good 15+ years of travel and adventure together before running into these types of roadblocks! (And I'd love to say a number higher than 15, but was trying not to be overly greedy in that vision - ugh.) Because we're only a little more than three weeks into this, my friends are still pretty sensitive about what they say. I haven't heard any complaints about parents yet, but I have felt similar bitterness when friends have complained about how "stressful" their weeks are. This was before I was even allowed to tell people about his diagnosis, and I too, had been one of those people at one point. This puts a whole new perspective on "stress" doesn't it? A busy week at work will never again be considered stressful for me. That said, I acknowledge that those moments are stressful for people, and I don't want to play that down just because I have a "better" story at the time. Part of my grief is that my parents are all I have, really. I haven't married, have no kids, etc. While I have some dear, dear friends, all those friends have families of their own. I have my parents, and they mean the world to me! Oh, the only thing I couldn't relate to was the frustration with the pink ribbon campaign. I totally see where you're coming from though! But, my best friend was diagnosed with breast cancer (on BOTH sides - two independent cancers) in March at the age of 33. I thought that was going to be my blast for the year. Then her mom (who is also so dear to me) was diagnosed with Lymphoma in June. Then my uncle was diagnosed with bladder cancer in earlly August, and my Dad's diagnosis came just a couple weeks later. That same best friend's aunt then died of breast cancer one week ago today. You can imagine what she and I talk about on the phone! We can't wait to have 2008 behind us, and often "joke" about topping one another's stories. I'd love to share frustrations with you again in the future. Feel free to PM me, or don't be surprised if you hear from me again! Amy

Oh goodness Linda, you sure have a lot going on. It sounds like the family is very busy, and a bit spread out - hopefully everyone can tap into one another for strength. And you know that you can tap into here for strength! Dip into this collective pool, and continue to keep us posted when you can. I hope that the doctors can find something to help your husband so that your hearts can all be back into the wedding. I'm sure your daughter appreciates all the support you are giving her, but likely would understand if you need to take a "breather," as well. I'll be thinking of you, Amy

Hey - I think I'm getting a bad deal! Mine works out to .28 per KWH if I did the math right. Seems spendy compared to everyone's (well except in Hawaii ... ). I get gas and electricity from the same company and last year they called me because they thought my gas meter was broken because it had recorded 0 for three months straight. Of course, the only thing I would have used gas for during that time was for my stove ... it wasn't broken, I just don't ever cook! Dare we ask the same thing for cable/internet? I feel like I'm turning my paychecks over to Comcast. (But now I can think of internet costs as LCSC membership dues and it's well worth it!)

Shrimp, My heart goes out to you and your family. I'm so sorry to hear your news. I wish there was something magical we could say or do to ease your pain. I'll be thinking of you. Amy

Hello Lori, I am sorry to hear about your recent news, and glad you came back to this site. I am new to this site as of last week, but have been a daily visitor since. I hope that your nurse can help communicate with the doctor that the medication you are being given to help with the nausea is not working for you. The oncologist my Dad and I recently met with stated that there is really no reason to be nauseous during treatment anymore, as there are so many excellent medications that they can give. Like Ned, I turned to what I consider to be a reliable website, the National Institute of Health's. I have some familiarity with them; a friend of mine was in studies with them for a very rare lung disease that she had. I haven't found them to be terribly open toward alternative treatments, but noticed that they were especially against Colloidal Silver. One of the things it mentioned - in addition to some scary side effects, including some that can cause permanent damage to organs - was that it can affect absorption of various drugs. I wonder if that could include chemo drugs. Here's their site: http://nccam.nih.gov/health/alerts/silver/ That said, I have NO personal experience, nor am I a doctor, so that's just what I came up with trying to help. I hope you began feeling better through your treatment, and will keep you in my thoughts. Amy

I hope being able to bring your father home and hearing him say he loves you brings you some peace during this difficult time. I cannot imagine your emotions. I will keep you, your father, and your family in my thoughts. I wish there was more to say, but please know people are thinking and caring about you.

Hey - I was chatting and just disappeared! How do I get back in??? I get the sign in screen and it says "you are already logged in. Go back to chat or logout." How do I get back to Chat? That was fun. I want to go back in ... Forget it. I solved it. Phew!

Thank you to everyone for your words of encouragement and support. I never would have believed that I could feel such comfort from people who HAD been complete strangers. I did a little better over the weekend - was happy to hear that the cancer hadn't spread all over his body, and had fun as we went about "normal" (which, right now, is all slaving away renovating a condo I bought. My Dad is truly enjoying helping me, and I think it's great we have something else to put our energy into.) So, my Mom, Dad, and I went to my father's first appointment with an oncologist today. While we had already received the Pathology reports, his general practioner hadn't interpreted much for him, although he knew that the cancer had spread to the lymph nodes. You may recall that originally his GP had scheduled an appointment for him with a pulmonologist for this upcoming Wednesday. I was scared and frustrated, and after much research knew that he had to see an oncologist, so why wait? I am so, so, so happy that we did this. He saw a thoracic oncologist at the University of Minnesota, and this doctor specializes in lung cancer. He was SO knowledgeable and gave us so much confidence. What impressed me the most was that he was honest, didn't sugar-coat anything, yet gave my Dad HOPE. He stressed over and over what an "ideal candidate" my father would be for the combo (chemo and radiation simultaneously) treatment that he recommended. Also, my Dad doesn't know much about lung cancer, so hadn't yet seen any of the scary statistics. I was nervous the doctor would be too upfront about them. Instead, the doctor refused to give numbers. I loved this. He was honest (saying things like "a very slim" chance to be CURED, but will focus on treatment) but he never gave any percentages (like, __% of people in Stage 3B make it one year, etc.) When my Dad asked, he stressed that my Dad will very likely respond "much better" than an average patient, so he wouldn't give numbers. I'm glad. So my Dad knows it's very serious, yet hasn't had his hope sucked out. While the doctor said over and over that he welcomed my father to get a second opinion, and said that my father could get treatment where ever he wanted, he DID stress to do it asap. Well, by the end of the conversation, my Dad said, "Let's do it. You can put the port in today if someone is available." He was so confident and ready to tackle this. I couldn't have been happier - my mom and I were both nervous he would drag his feet on this. The doctor called the radiation doctor, got my Dad an appointment for next Monday so the radiology folk can make their plan, and chemo and radiation will start within two weeks. If you had told me two weeks ago that I would have thought this was "good," I would have burst into tears. I wish this wasn't our reality, but it is, and this is truly the absolute best case scenario. There were so many "ifs" ... If I hadn't bought a condo this summer, my Dad wouldn't have been painting the ceilings, and then he never would have done in for a pulled chest muscle, and he never would have had the X-ray that showed the nodules, and so on ... I will most definitely keep you posted. I took 5 or 6 pages of notes (my hand and fingers are still sore), so have all sorts of details. Thank you, thank you, thank you again. I have been reading many of your stories on this site over the last few days.

Desertthorn, I am new here as of this week, so don't have much information, but I just wanted to say hello because I am NOT a moderator. wanted you to know that there is another "member." We will move up the ranks together, okay? If you are content cleaning dust bunnies for the next two weeks, by all means, go for it. (And I definitely have enough dust bunnies that two weeks wouldn't crack the surface!)But if the waiting is too much to bear, I have difficulty trouble believing that you HAVE to wait two weeks to get a CT scan in Seattle. (Not trouble believing YOU - trouble that your GP would be content with that if it is causing you so much stress). It's not like there aren't multiple places to get CT scans in Seattle. What do they do in absolute dire emergencies? Of course, insurance and such could play a huge role, but if that isn't the case, maybe you could start calling around if your GP isn't doing it for you (ONLY if you can't bear waiting). I'm in Minneapolis/St. Paul, and my Dad was given what I considered to be too much wait time after the PET scan before he could see a specialist. So I got on the horn until I could get him an appointment sooner. In fact, my mother did the same thing for him to get his PET scan moved up. I sure like the idea of not worrying about it, and just living life for two weeks too! From a fellow non-moderator ... you have my support. Amy (By the way, aren't all these moderators GREAT? I love how quickly they respond - and with so much love and support! When I first saw the site on a very, very low evening and started reading things, I thought, "hey, I need people to say those caring things to me too!" It worked, and I will be forever thankful.)

I am so thankful that I stumbled upon this site. Everyone's words of encouragement have been VERY helpful. We got the PET scan results today, and while they aren't perfect, I think they could be a heck of a lot worse, as well. The cancer HAS spread to the lymph nodes, but from reading the scans, it appears as though it is somewhat contained in that area. (???) I don't find reference that it has spread to the other side, or the upper lobe, but perhaps others can decipher the notes below. Neither of my parents asked the doctor WHICH lymph nodes it had spread to - they heard that it had spread to the lymph nodes and that's all they got. The doctor did say that chemo would be the likely first step, which I understand is normal being that it has spread. They sent me the report and here are a few key words I picked up ... "Head and neck: negative ... also present in the adjacent satellite pleurae nodule compatible w/a metastasis. ... Hypermetabolism continues into the soft tissue density in the AP window ... also compatible w/mediastinal lymph node metastases. ... nothing below the diaphragm ... no pleural effusion on either side ... 2.9 cm x 1.6 cm and is in subpleural location." If anyone has insight on any of the above, please let me know. It's not going to knock me down anymore than any of this has. The couple words I'm a little less familiar with are * "AP window" (found a definition online, but not sure how it relates here), * "subpleural location" (although I know all about the pleura from a lovely bout with pleurisy a few years back ... does that mean it IS or ISN'T in the pleura?), and * mediastinal I know that no spreading would have been better, but they also didn't say that it has spread to every region of his body, so I will try to take comfort in that latter piece. I think an important piece is that my Dad remains VERY positive. He is all ready to fight this. I hope the oncologist doesn't steal that optimism from him. Based on the above, the oncologist won't just give him a "get your stuff in order" gloom and doom report, will he??? I had a tough day, but staying busy this evening has helped. I appreciate the Xanax suggestion. While I've never taken it, I felt desperate for something to calm my nerves a bit today. If I can't settle down in the next few days, I will need to figure out better ways to cope. I can't thank you enough for your words of hope and encouragement. I can tell that I'm going to become a regular here, and I already look forward to the day when I can help someone else. : ) Amy

Kelly, I am so sorry to hear everything that your family has been through. I'm a St. Paulite too, and know the senior living centers around here quite well. I am glad you were able to talk your mother into moving up here (and good thing you didn't do it in the peak of the winter!). Hopefully being with loving family members is helping her - the recent scans certainly indicate that to be true! Best wishes from your own town, Amy

Hi. I found this site while looking for support groups. I've spent the weekend doing research and now am ready for some support. I should back up ... My 62-year-old father was diagnosed with non-small cell cancer in his lower left lung lobe. The nodules were found in an x-ray a week or so ago, he had a biopsy last week, and it came back positive on Friday. His PET scan was today (Wednesday), and we are supposed to get results tomorrow. He shows no symptoms - was in for a chest x-ray for a possible injury, and that's how this was discovered. This is all too much to take in, and my parents have requested that I don't tell anyone yet. While the news is so hard and so scary, it's harder on me not to get to talk to ANYONE. I'm avoiding friends because I can barely hold it together and they will wonder what's wrong and I feel phony saying that all is great. That is why I was looking for support groups. I'm intermittently a bit of a mess. Once a treatment plan is in place, they say they will tell people. I'm not sure if that means tomorrow (when the PET scan results come in) or after Monday (when we meet with an oncologist). I want to ask if anyone has any advice, but that seems so broad. I'm just having a heck of a time maintaining sanity here. Most of my excess energy has gone toward research, research, and more research, and then I can pass the USEFUL stuff along to my parents, and they are thankful for that. Of course, when researching, you can't help but come across all those scary statistics too. Here's one productive question: what are your thought about being seen initially by a pulmonologist versus an oncologist? His primary care clinic set an appointment up for next Wednesday with a pulmonologist, but it doesn't appear that the doctor does much with lung cancer. He works with an asthma and sleep apnea clinic. I figured that my Dad should be seeing an oncologist who specializes in lung cancer (plus didn't want to wait until Wednesday, since I'm not allowed to tell anyone!), so we now have an appointment at the Univ. of Minnesota on Monday. Also, how important do you think it is to get the ball rolling on treatment versus waiting for primary care physicians to return from vacations, etc.? Last, do any Minnesotans have experience with any of the oncologists at the Univ. of MN? Any recommendations (or lack thereof) based on "bedside manner," etc. Even if the news isn't great, we want someone who will offer HOPE and reason to fight. Really "last," ... any advice for this waiting period? Anytime I'm not consciously directing my energy, I am having a really, really hard time. I look forward to perusing further on this board, and reading other people's stories for ideas and support. Amy