Leslie

Teri-- From the moment my brother, Adrian, and I started posting on this board, you and Bill have been an inspiration to us. You guys fought this battle with grace, courage, strength, and dignity. You gave us hope, when no one else could. We are grieving with you today. I send you all of our strength as you enter the next part of this journey. Leslie

Hi Lonely-- We definitely went through a period like this with my dad...it was pretty scary until we realized that one of the medications we were giving him had a major, major sedative effect (the medication was ativan). We took him off of it and added just a little bit of decadron (1-3 mg per day)--and it has just made a world of difference. I wouldn't say he is completely back to normal--but it is 180 degrees different from where we were two weeks ago. He is eating more normally, taking small walks each day, and last week, he started reading about a chapter a day from some books for work...before this he could barely get dressed in the morning (and after getting dressed, he would basically sleep for most of the day). So, you might want to check the medications he is taking to make sure that none of them are contributing to his current level of fatigue. You may also want to talk to your doctor about low level dosages of steroids. Both have made a tremendous difference in my dad's energy and activity levels. I know how difficult it is to see someone you love with this level of inactivity. It changes their entire personality and it is so scary. I'm thinking strong thoughts for you. Leslie

I just want to express my deepeset appreciation and thanks for all of your thoughtful responses. As Adrian mentioned, my dad had his second chemo treatment yesterday and he feels great! We have discontinued the atavan (sp?) and he has started small daily doses of decadron. The change is like night and day....he took a walk yesterday, went to the movies today, and ate a great dinner yesterday and today. For the first time in weeks, we were able to talk politics, talk about cancer, just talk about more than his physical condition. I treasure having my dad back... Once again, thanks to all. Sending strong positive thoughts to everyone tonight. Leslie

Hi PreciousLife-- When my dad was diagnosed with brain mets just a short time after we had received the lung cancer diagnosis...well, it was just so overwhelming for all of us. My dad is still not in a place where we can talk to him about feelings--but we can at least talk to him about physical symptoms. Support your dad--he probably needs your help as much as your mom does. Your mom will come around--this is a lot to process in a very short time. My thoughts are with you and your family. Leslie

I can relate. My husband and I have only been married a year. In the course of that year, we moved cities, we bought a house, I've changed jobs three times, and my dad was diagnosed with Stage IV lung cancer. Yup, it's been a stressful year. We seemed to be doing well with it all until last week--when my husband started feeling really upset. I am finding that the only way to get through this is to keep talking, to remember that this is not his fault, that he is sad too, and that this is hard for everyone. One of the things that my husband said made him feel saddest was the fact that we can't really plan anything for the long term--because we just don't know how my dad is going to be doing...I feel like we have to put everything on hold--from the little things (like vacation) to the bigger things (like having a kid). One thing that has helped a little has been speaking with a therapist on a weekly basis...sometimes it just feels good to vent without worrying about hurting anyone's feelings--or bringing someone else down to my dark mood. It's just a tough time right now. In strength, Leslie

Thank you everyone. For better or for worse, I just had a talk with my dad too...I said that we are so worried about him. That we need him to drink 64 oz of water a day and that we need him to eat. That so much is out of control with cancer---we need to stay on top of the few things that we can control. And that I know he is really suffering--but that we have to find some way to help him muster the strength to move forward and to do the things he needs to do. I threatened to leave DC and my job to come home...(A, I didn't realize that you had done the same thing until I read your post...) I feel terrible because I was really crying throughout--and the last thing he needs is to have to take care of me through all of this. He seems to have heard us (I pray, I pray). Thank you for your thoughts. Leslie

Hi all-- I know that I have seen this issue addressed before--but I need your collective wisdom today. My dad began chemo (carboplatin/gemzar--avastin will be added next month) last Thursday. He is about to receive his gemzar infusion today. Before starting chemo, he had SRS to take out 3 brain mets and 15 rounds of WBR to knock out 4 incipient mets they spotted on the MRI. The problem: He's not eating. He's lost 11 pounds so far. We have taken him to a nutritionist and he cannot/will not follow any of her suggestions. We've tried plying him with ice-cream, chicken soup, matzo balls--anything he wants...still, he barely eats. We've gotten him Marinol, anti-nausea meds--nothing is working... The chemo and WBR have simply knocked the wind out of him. He's feel weak--and you can hear it in his voice...he can't really focus on anything right now. He is just not himself. It is really, really scary to see him this way. My mom is starting to panic--and frankly, so am I. Does anyone have anything that helped with appetite--or putting on weight during chemo...I know some of this is part of the process...but is it always this hard? As always, thanks for your help. Leslie

Nova-- I can relate. There are times when the feelings are so overwhelming--that I just want to run down the street screaming. There is nothing insane about feeling scared, helpless, and angry in the face of this absolutely cruel disease...I haven't really been able to get to a positive place, if I fight really hard, I'm able to get to less scared, less angry...but that's really all. I have found that letting it out--as you are doing--periodically, is very helpful. There is clearly a biochemical response to hard crying--and I have found that a really hard cry sometimes makes me feel better. You are not alone. We all wish, desperately, for our old lives back. I wish that I had something that would make it all go away--for you and for me...all I do know is that the extremely hard time that you are having right now will pass. It may not get easy--but it won't be this hard. I wish you peace and strength tonight. Leslie

Dana-- God, can I relate...the fear, the worry, the sadness, and (at times) the anger can just be overwhleming. I am finding that not only is the cancer unpredictable--but so are my emotions... The fear and worry are constantly with me...I find myself thinking about cancer and my dad all of the time... Last weekend, my husband and I went to visit some friends and their baby--and I spent the rest of the afternoon in tears, worried that my dad might never see his own grandchildren. The feelings are so painful--and so intense. It is really hard to find ways to soothe myself. I am finding that when I have a good cry it can be really helpful and sort of calming...and I also find that when I talk to people who are also going through this, and realize that I am not alone and that my feelings are entirely normal, it also helps. I wish you peace and strength today. Remember, your mom is here today. She will be here tomorrow. Even before cancer, we didn't have any guarantees beyond that in our lives. Stay in the moment. I apologize for all of the cliches--but I truly believe that focusing on these things is the only way we get through this. Best, Leslie

Wondermom-- My brother and I have decided that no matter what anyone tell us--our dad has sarcadosis. Gallows humor, I suppose. I'm glad you are feeling better. Those hard days can be so overwhelming. I'm thinking really positive thoughts for you and your mom. Best, Leslie

Hi, Wow, can I relate to your post. The endless researching before the final diagnosis (I was completely convinced that my dad had sarcadosis...) and then desperately trying to figure out what our plan of action should be--trying to know if we are really doing the absolute best thing for him. I started to realize how little control I had over this when one week after his initial lung cancer diagnosis we found out he had brain mets--and then when he went in for SRS a few days later we found out that he not only had 3 fully formed tumors--but 4 incipient ones too. Just when we thought we had some "control" over what we were dealing with--we got kicked in the teeth. I wish I had some advice or consolation to offer--and all I can say is that I understand how you feel. A friend of mine who is dealing with her dad's cancer and is also in AA--recently suggested that I needed to remember the "surrender" part in all of this...some days I'm better at this than others...The desperate feeling that we should be doing "SOMETHING--ANYTHING" to fight this--if only we knew what to do is a really hard and really scary feeling. I hope you can find some peace today. I suppose the one thing that I've learned in the 6 weeks that I've been dealing with is that the hard days will come--but they will also pass too. Not that it ever gets easy--but at least it's not quite as hard. I wish you strength. Leslie

Hi Aubree-- I'm Adrian's sister. I'm so sorry to hear that you are going through this too. It is really, really hard being so far away. I'm in DC, my parents are in LA. I just moved about 9 months ago--right after getting married. We found out that my dad had Stage IV NSCLC the same week that I started a new job. (There have been a lot of changes in my life recently.) I am lucky in that my employer is being very flexible--so I'm flying home every 3-4 weeks to visit. I also talk to both my mom and my dad several times a day--along with my brother. I think you will find that everyone has their own role to play in this horrible drama--and you will find yours as well. The most important thing that I think I've learned over this past month has been how critical it is to stay in the present. Cancer is a painful reminder about the fact that we never have certainty in life....even before cancer came into your life, you didn't have any guarantees. Cancer puts that into stark relief. Jumping ahead and trying to anticipate how all of this turns out is a dangerous exercise--mostly because, you really don't know what is going to happen....lots of people live with this disease and manage it as a chronic condition. And your dad can be successful as well. I often feel that I am not in a position to offer advice to folks at this point--given that we are only 1.5 months into this and I am still learning too but please feel free to send a private message if I can help. I will say that the one thing that has helped is to keep planning my trips home. I was there last week--and I already have my plane tickets for my next visit in 3 weeks. While you may not be there physically, you can do family conference calls--you can send messages--and you can be in very close contact. My mom, brother, and I have found that the family conference calls are very, very helpful... In strength, Leslie

Hi Bucky-- My dad had SRS for three tumors and is in the middle of WBR for four incipient ones. He has had 13 and has two more to go...Thus far, he has been very, very tired and has lost his appetite. Some of his hair (didn't have much to begin with...) is also coming out. I wish you strength. Leslie

Today was the first day that my dad decided not to teach class. He was just too tired. Next week is the last week of classes, and he's promised himself that he will be there...I am so proud of him. His hair is coming out--but he is strong. It's very interesting to watch him deal with the cancer at this point--he treats it like a bad cold, an inconvenience, an annoyance--but nothing more...so that's how I want to treat it too! I just want to say a special thanks to everyone who responded. Your wisdom, strong messages, and insights are so helpful...Though my family is in an unlucky situation, we remain a lucky family--particularly to have support like this. In gratitude, Leslie

Gosh, do I know how you feel. My dad lives in LA and I moved to DC a year ago. I went out for a 5 day visit last week (our first visit since his Stage IV diagnosis 4 weeks ago...)It was all I could not to start sobbing in front of him when I had to leave... But I keep reminding myself--it was always hard to say good-bye even before cancer...I hated having to leave my parents because I love them so much! And even before cancer, we never had assurances that this "wouldn't be the last time". Life is always uncertain--cancer just gives us a constant reminder of that fact... As far as trying to give you "final details" etc.--I think parents sometimes think that this is a reassuring thing to do...trying to show you that you would have nothing to worry about if they were gone (as if having taxes and finances in order would be the thing we'd worry about if they weren't here...)But I think it's their way of reassuring you and themselves that everything is under control--and that's one less stressor in your life. Of course, for us, it just reminds us of the precariousness of everything--so it's not much help... I find it really helpful to try to stay in the moment. Today, your dad is here. He's okay and you are okay. Even before cancer, you really didn't have any guarantees more than that... Sending strong positive thoughts your way. Leslie

Hi all-- I know Adrian recently posted to report that my dad is doing really well. Although he is quite fatigued, he actually looks great (although you can see the fatigue in his eyes). Despite not feeling 100%--he is still teaching class once a week. It seems that having the goal of getting to class on Thursdays helps keep him focused and gives him a reason to get out of bed each day. He has two more classes until the semester ends. I am so incredibly proud of him for even making it this far. In the past in our family, nothing is ever off the table for discussion. We have always been open with each other and with others. I am finding however, as Adrian mentioned, that with certain people I would rather just gloss over the details of everything that we're going through. Re-living the past 6 weeks with each and every person---is just not that helpful. It feels funny not to talk about the most significant thing happening in our lives right now--like we're avoiding the elephant in the room--but on the other hand, the feelings are so deep and so painful...that sometimes it feels better to stay on a more superficial level. The "How are you, really?" questions--are sometimes really unwanted... So, that was a really long introduction to a totally unrelated question--my question is: Some folks on this website, appear to have received radiation to their chest. This option has not been offered to my dad. Can anyone tell me why they had this procedure and how it helped? I just want to understand the full range of treatment options. Thanks in advance. Apologies for the very long post. Leslie

Hi all-- I'm sorry for posting so much--but we have now begun our journey and the realities of cancer are beginning to set in. My dad had SRS last week and he has now had four rounds of WBR this week. He has 11 rounds to go. He is already experiencing a lot of fatigue and weakness. He is a professor and he almost didn't teach class yesterday--he managed to make it...but I'm scared about next week. I know that fatigue is common with radiation. Has anyone come up with some good strategies for pushing through? We keep reminding him that he really needs to try to keep up with regular activities--but I know how hard that must be when you aren't feeling great. I'd love to hear from some folks about how you keep pushing through--even on hard days... Thank you in advance. In gratitude, Leslie

TiredMom-- This is really helpful information. As you may have read from brother's post below, our dad has lost 10 lbs. since his diagnosis one month ago. My dad has always been slender and fit--so 10 lbs is a lot! In the past, my dad has been very health conscious--eating lots of whole grains, fruits, vegetables, and wild salmon. Now, we are coming to learn that with cancer--healthy eating is really about high calorie eating. So, last night, my brother brought him some packs of Ensure, Zone bars, and ice-cream. We have to get his weight up! We will also speak with his oncologist about anti-nausea medication as well. I am visiting him next week and I have also scheduled an appointment with the oncology center's nutritionist. I've seen some of the responses below--but if anyone has any additional thoughts on keeping one's weight up through cancer--it would be much appreciated. In strength and solidarity, Leslie

We got some (relatively) good news yesterday. My dad met with the neurosurgeon and he thinks that there are 3 not four nodules. He thinks we can do stereostatic surgery. It will take 6 hours to "plant the quadrants" and 20 minutes of radiation...and the doctor thinks my dad can teach class the next day! (My dad is a professor.) Not only that, but he thinks that my dad can start taking the Avastin right away so chemo will not need to be postponed as we had previously feared... The neurosurgeon said that the nodules in the brain are very small--had we not done the MRI we never would have caught them until too late! Just a reminder of the importance of MRIs with this LC--because of the tendency to head for the brain. To everyone that wrote this week with such comforting words, many thanks. Let's pray that this works. Leslie

We are in almost the same situation. I feel like I'm in free fall right now and I don't know when I'm going to hit the ground. We have to stay strong. I believe that our parents are strong and they can overcome this... I am hopeful. Leslie

Thank you all for your thoughtful words. My dad goes for a second opinion today. We are going to stay strong. I have to believe that we will be a lucky family in an unlucky situation. Your support is enormously helpful. Best, Leslie

We received really bad news tonight (just when you thought it couldn't get worse...). The PET scan revealed that in fact, my dad does not have Stage IIIB Adenocarcinoma lung cancer. It is Stage IV. It has spread to both lungs and they found two nodules on the brain (in the cerebellum). Chemo is now being postponed and my dad is meeting with a neurosurgeon on Friday to discuss radiation. I am so sad and so upset right now that I can barely move. Does anyone have experience with this? Can someone please give me a reason to be hopeful? Leslie

Wendy, Don, Raney, Ned, and Susan-- Thank you so much for your excellent information. We get the results of the PET scan and brain MRI tomorrow--and if all goes well (a major if, I know...) chemo begins tomorrow. Ned--I can't say that the view from UCLA will compare--but at least the weather will be nice... I wish I wasn't here--but I am so happy to have found you. Leslie

Hi all-- It looks like my dad is going to begin chemo on Friday. He was diagnosed with Ademocarcinoma Stage IIIB last week. The treatment plan is Taxol/Carboplaxin and Avastin---six three week cycles. My question: What should we do to prepare him for his treatment? I have searched on the web and a few sites have mentioned the importance of going to the dentist ahead of time because of the risk of infection in the mouth. True? Several sites have also recommended fruit smoothies as a good way to get in calories with minimal digestive side-effects. Any thoughts on what he should eat/not eat the day of chemo and afterwards? Any other recommendations from folks who have already been down this road? Additionally, we would like to understand how long this type of treatment usually takes to administer and the typical side effects? Thanks in advance for your help. Leslie

A second round of thanks from Adrian and I. You can't imagine how comforting it is to have found this site and to have found so many knowledgable guides in this very unfamiliar land. PET scan Monday, MRI Tuesday. Please keep us in your thoughts. We love our dad so much. Leslie