lisaRN

marzipan.... for the italian cookies i am making .....yummmmmy ....can't wait to eat em

Bruschetta What you will need: 6 Plum Tomatoes 2 cloves fresh garlic olive oil salt & pepper to taste italian flat leaf parsley French Bread cut into 1/2" slices and toasted in the oven (you can brush them with olive oil and/or garlic if you like dice the tomatoes....mince the garlic....chop the parsley....mix all together with olive oil to coat....salt & pepper to taste.... you can add crushed red pepper flakes too to spice it up if you like.... spoon the tomato mixture onto the sliced toasted bread.....you can add shredded parmesan cheese if you like... Bon Apetit!

hi karen....i am so sorry for your loss....i know firsthand how very difficult it is especially during holidays, anniversaries and birthdays.... i lost my husband 3 years ago this month..... thanksgiving was our last holiday together....thanksgiving oddly enough seems to be one of the harder times in the year....the memories of him suffering from this ruthless disease i guess are what makes it so difficult....i believe part of my sadness stems also from wanting to hold on to that holiday as though it is somehow connected to him.... i understand how difficult it is to hear people tell you that you have to move on....personally i felt guilty to even consider moving on.... the pain and sadness never really go away but it does somehow find it's place.... a place somewhere deep in your heart and in your memories..... tucked away allowing you to go through the motions of life....perhaps even being able to appear to "have moved on"..... i find it difficult to look at pictures....they always make me cry.... my son wants to view old home movies and i have not reached that point yet.... sometimes i hate that my crying or being sad makes everyone so upset.... i feel often that i have earned an inherent right to feel whatever way i choose without everyone thinking i have gone off the deep end..... what i have come to realize though is that my moments of sadness are just that....moments....moments in a universe filled with time that no one can really catch hold of.....but my memories.... they are mine..... embedded in me..... forever....

when discussing my young husband's passing from lung cancer i am often asked this very question....it used to make me sick inside....wondering why people assumed he had smoked.....my husband never smoked a day in his life and yet had a disease that somehow grouped him into a category of "it must be your fault you are sick".... well last week marked the 3 year anniversary of his passing and i still feel as though it were yesterday....people still ask the same dumb questions....but now i answer differently..... somehow along the way you are given the strength to turn misinformation and ignorance around...little by little..... one person at a time.... i have begun to teach others that no disease, not simply lung cancer, should be blamed on the person inflicted....instead we should all take advantage of these questions and use the opportunities towards bridging understanding of the making of this disease and towards finding a cure.....

When does this get easier? It is so hard.... I miss you so much Ahmed. Thursday was our 18th wedding anniversary, and i am so lonely without you. I'm tired. I am so tired of trying to be strong for everyone. I am so tired of missing you. I cry when i think of you, when i smell you, when i see your face.... when i dont. I need you here to take care of me the way you always have. I need you, I need you. My soul is reaching for you my friend.... my best friend, my love. I wish i were beside you now. This journey we take through life is such a punishing quest. I wonder why. Please tell me why? Lisa .....

Dear Katie, I don't know if you did it intentionally or not, but I really appreciate the fact that the caregivers forum is nestled in at the top and not lost somewhere down at the bottom of a page..... I know this probably seems trivial to many.... but to me it is symbolic.... symbolic of how I have felt for the last 16 months since losing my husband..... It has been my experience with many local support systems that once the patient is gone, the family is encouraged to deal with the "grieving" process.... but I think there is much more to it.... I think that there is a "survivor" aspect that many experts and programs have not explored. The term "survivor" is often used in referring to patients that are deemed as "NED or No Evidence of Disease" (may God bless them). However, sometimes people will say that HE had the cancer and now HE & the CANCER are both gone .... I always think when I hear that term..." where does that leave me" ..... afterall, technically I consider that my son and I are "survivors". The fact is that cancer is far more than a physical illness/debilitation.... it is a psychological mountain to climb, one which you never truly overcome..... As a caregiver, wife, best friend.... I have ALWAYS referred to when WE were diagnosed, when WE had tests done...... and although the the cancer ravaged Ahmed's body.... it ravaged too my soul, & rerouted my son's entire path to the future..... in many ways... I feel as though the cancer is still with us.... maybe not inside us physically but hanging over us like a shadow...lurking... I have come to realize that the cancer didn't really go away ..... unfortunately it will be with us our entire lives.... In some sad way.... we too are lung cancer "survivors".... Perhaps it is simply WORD PLAY but considering the fiasco I experienced this week with fellow nurses and their lack of compassion, I sincerely want to thank you Katie for not allowing family/support/caregivers..... & "survivors" to be lost somewhere in lung cancer cyberspace .... Lisa

I have to say thank you to the many responses I received from my last post (although only two remain, not sure where the rest went off to ). It did help me so much to have that support from all of you.... As you can tell, I am not very good at this.... For the most part I have stayed away from EVERTHING cancer this whole past year.... maybe i feel like if i dont have to read about it or hear about it i wont have to deal with it and it will all just go away, as if it never existed... the problem with my theory, is that there is still this huge hole, a void in my life, one that cannot be replaced and one that CANNOT be DENIED.... i wouldn't say that i am depressed, certainly not to any capacity that is prohibiting me from functioning.... our days are so jam packed that i think that is what has gotten me by until now.... the day i posted re: the terms of endearment film was sort of like the straw that broke the camel's back.... i was so lost that day.... unusually so..... in the past i would have found comfort in my husband from situations like that.... (somebody should invent cell phone service to heaven ) ..... it really did help to come back here.... everyone is so wonderful my son is amazing, it's true.... you couldn't tell that i am his #1 fan, could you ........... in addition to his own abilities, I have seen an incredible transformation in him this past year.... the first thing he said to me after his father passed (while we were on our way home from the hospital) was "Don't worry mommy, I know I can never replace Baba, but I am going to take you of you forever" it broke my heart to hear him say that, in spite of my immense pride in having a son who cared so much and was so in tune with his family, i hated the fact that he HAD to say it..... i hated the fact that he was 14 yrs old and HAD to deal with any of this.... as much as i continue to try to keep him focused on being a teenager and not a grown up.... yet....... he matures with leaps and bounds..... i wonder sometimes if his father would recognize him..... he would be so proud though... that said, we are not without the moments that when things get increasingly difficult or the pressures from school mount, etc... that he doesn't turn to me and literally start crying saying "why did baba have to die.... nothing is the same anymore..... YOU'RE not the same anymore...." sometimes i just dont know what to say ( an odd feeling for someone who never stops talking ) it breaks my heart to see him going through this.... in spite of the fact that Ahmed had started teaching him how to drive during the summer we were diagnosed, Tariq has resisted getting his permit since he turned 15 and never takes me up on my offers to let him drive in an empty parking lot or back the car out of the driveway.... i dont push him though, because i do feel as though it is part of the process.... maybe it is something he felt he shared with his father and doesnt want to let go of that.... i worry about him.... he talks to me a lot.... but i worry that he might hold back too.... this is truly a long hard process and unfortuantely you can't buy a "grief kit" to make it any easier..... or an "eraser kit" to make it all go away..... thank you again for your support.... everyone

My dear Lord, why doesn't this get any easier? It seems to get harder as time goes by... I finally got the courage about a month ago to get serious about going back to the wonderful world of work. I sent out resumes and secured a position in a local hospital. I am a RN (graduated 8 months before my husband Ahmed was diagnosed). I didn’t have much experience before we started down Lung Cancer Speedway. I left work the day Ahmed was diagnosed and haven’t been back since, in spite of the fact that he passed away nearly 16 months ago.... I have been so focused on our now 15 yr old son who was only 13 when his dad was diagnosed and 14 when he died. My son, Tariq, wants to be a filmmaker. He has been home schooled since kindergarten and started taking college courses at a local 2 yr college when he was 13. Actually, he has been involved with their college for kids program since he was 5 and started adult continuing ed classes when he was 10. But since he was 13 he has taken official adult (for credit) classes and maintains a 4.0 GPA. Because he is so exceptional, I have been focused on providing him with everything HE needs. He was accepted to New York Film Academy the year Ahmed was sick but couldn't go because life was UPSIDE~DOWN, RIGHTSIDE~UP & EVERY~WHICH~WAY... Ahmed died December 5, 2004 and life came to a halt for us... suddenly all of the family (from both sides) returned to their lives. Life seemed to be going on without us… I was very depressed and couldn’t think of anything except him. I decided that I had to pull myself out of it and be strong for my son… I had to focus on what we had and not stop my son’s life because I couldn’t let go of what I no longer had. I didn’t look at anything that talked about cancer, didn’t write about cancer, didn’t go near anything that reminded me of this ugly disease. Until now I still haven’t looked at old family movies or photos. I guess we all deal with things differently but this was how I knew I could get through this. Tariq received word in the beginning of January 2005 from New York Film Academy that he was welcome to join this year’s program. So I forced the issue with him. He didn’t want to go. I think he felt that if he were to continue his life, having fun and doing things that distracted him from his grief, that in some way he was betraying his father or his father’s memory. Perhaps this was my problem as well. So I made the arrangements for us to spend the summer in Florida. NYFA’s summer program has many satellite sites, one of which is MGM Studios @ Disney in Orlando. But we weren’t scheduled to leave until the end of May. I wasn’t sure how we would get through the next few months. I had let Tariq take the semester off from classes, so we were strictly home schooling. Looking back, I think that was a mistake, but he had been through so much. I didn’t want to put too much pressure on him. The thing is, is that I forgot how much of a positive distraction school had been through the whole ordeal. It gave us a reason to get out of the house and not let the days pass us by. During the next couple of months, my mom had been after us to move to Charlotte, NC at the end of the summer in Florida. I, at some point, relented. We left Connecticut in February and headed south. When I got to Charlotte, my mom took us out to look around at houses. I wanted to buy a house but housing was so expensive in Connecticut. We had looked at 2 bedroom condos before Ahmed passed away that were selling for $695,000. I couldn’t believe it when I arrived in Charlotte and found beautiful, large homes for less that $200,000. And brand new houses at that! I was hooked. I felt that we would be making a good move. Housing would be more affordable and we would be close to my mom and sister. They sold me. So I kept looking but perhaps there was too much to choose from or that I didn’t know the area well enough. So I returned to Connecticut with the intention of packing up the house and having the movers take everything to storage. I figured that during late spring and summer we could make a few more trips to Charlotte and eventually we would find something. We did make several more trips to Charlotte but in August we chose an apartment and kept looking around. Nothing “felt right”. Life is so hard for me now. I continue to want to turn my head to my best friend and talk to him about everything, find out what he thinks. But when I look around for him I am overwhelmed by the fact that he is gone. I get this feeling that comes over me from head to toe. It feels like the day we were diagnosed. It feels like a truck hit me. It feels like the day he died. It feels like I lost my best friend never to see him again. It feels like every inch of me is burning, twisting and turning. It feels like hell. Then I begin to cry. Finally, in November 2005, we found a townhouse that we like enough to just get it done. I thought that if we moved into our own home with lots of space (2400sf and 2 car garage) we would at last feel “settled”. I don’t know when I became naïve during this treacherous journey. I have always been known to be smart and on top of everything. Suddenly, I feel like a lost soul. I was cautiously optimistic though. I knew that at least we would be closer to family. Having my mom and sister around a lot would be a tremendous distraction. Only it didn’t happen that way. We officially have the movers move us into our new house and suddenly everyone has their own life to live. No one has time to socialize. No dinners, no lunches, no nothing. My sister is so busy with her friends and job that she never even returns calls. My mom is constantly running around shopping and socializing and has her own routine. We hardly ever see them. When we do, they are always in a rush. I commented once about it and was told, “I hope you didn’t move here for us…”. Oh my God. What have I done? I am devastated over all of this. I decided in January 2006 that if Tariq and I maintain our own routines and not depend on anyone for anything then life would stabilize somewhat. I don’t know if I am kidding myself or what, but I KNOW that I would NEVER have chosen to live in North Carolina if it hadn’t been for the desire to be closer to my family and the fact that THEY persuaded me. I know I started doing the “poor me” thing which I absolutely hate. So I started sending my resume out. I took this position in the hospital, reluctantly. I really wanted a job in mother/baby but they steered me to a cardiac floor instead. I started orientation there on Monday and by the end of the day I was in tears. I didn’t realize how difficult it was going to be for one. My “first day” back to work since Ahmed was well. Maybe I have held onto the feeling that he is still with me if I don’t change my employment status… I don’t know. I know this is all crazy. I hate the way everything has turned out. I hate North Carolina. Anyway, at the orientation, they kept having the group of new hires get into small groups and perform skits based on patient care and customer service. I didn’t know how to react. I felt tears coming to my eyes more than once. They showed a clip from “Terms of Endearment”. It was that scene where Debra Winger is dying from cancer in her hospital room and it is time for her pain meds but the nurses keep putting her mother Shirley McClaine off. They told her they would get to it in a few minutes and “sorry ma’am it’s not my patient”. Shirley McClaine gets really outraged from their responses or lack thereof and starts circling the nurses’ station screaming that it was time for the shot, “give my daughter the shot!” Well when the clip was finished, they asked the group if the mother was justified in her behavior. I was horrified that I was the only one who replied that it was. I said the nurses, for one thing, should not have been so non-chalant about the situation and that everyone reacts to situations differently. I felt that the nurses should have put themselves in the patients/families situation… I was so angry to hear the other responses. Some said she should have “contained” her anger and acted “professionally”. Some said she should have been more patient. Others said that the patient should have asked for the meds and not the mother. Their whole attitude about how the family members should be treated or are perceived was shocking. Actually, it was appalling. I felt so bad that I was “one of them”. I didn’t want to be. I hated the way Ahmed was treated during his hospital stays. I hated the way nurses are thinking. I hated feeling like I was alone in my position that the patients and families deserved kindness and understanding. That is our job as the healthcare professional to recognize that everyone deals with illness and difficult situations differently and to allow them the space to be “angry” if they needed to be. I hated the fact that I saw so much lack of compassion then and now. I hated knowing that there are nurses out there that have attitudes that they shouldn’t have and that perhaps shouldn’t even be nurses. I didn’t realize that I was still so angry. Now as if that wasn’t enough, my recruiter had misled me re: the unit I would be working on. They decided to put me on a different unit without asking me because they had a “greater need”. Oh and by the way, “your health insurance is going to cost double and cover half of what I told you because I wasn’t aware of the new plans”. Needless to say, at the end of the day, I decided not to take the position and began my search over again. I have never, ever done that before and felt as though I was copping out. But it just didn’t feel right. Yesterday, I spoke with a recruiter for a home care agency and have an interview with them tomorrow. I think I need to stick to homecare for now. That is what I was doing before we were diagnosed. It is really a rewarding position. You can act as patient advocate and you really feel like you make a difference. Maybe if I fight for my patients, it will be therapeutic for me. I don’t know. I don’t know anything anymore. I thought this would get easier…. but it doesn’t… it just gets harder.

My dear Lord, why doesn't this get any easier? It seems to get harder as time goes by... I finally got the courage about a month ago to get serious about going back to the wonderful world of work. I sent out resumes and secured a position in a local hospital. I am a RN (graduated 8 months before my husband Ahmed was diagnosed). I didn’t have much experience before we started down Lung Cancer Speedway. I left work the day Ahmed was diagnosed and haven’t been back since, in spite of the fact that he passed away nearly 16 months ago.... I have been so focused on our now 15 yr old son who was only 13 when his dad was diagnosed and 14 when he died. My son, Tariq, wants to be a filmmaker. He has been home schooled since kindergarten and started taking college courses at a local 2 yr college when he was 13. Actually, he has been involved with their college for kids program since he was 5 and started adult continuing ed classes when he was 10. But since he was 13 he has taken official adult (for credit) classes and maintains a 4.0 GPA. Because he is so exceptional, I have been focused on providing him with everything HE needs. He was accepted to New York Film Academy the year Ahmed was sick but couldn't go because life was UPSIDE~DOWN, RIGHTSIDE~UP & EVERY~WHICH~WAY... Ahmed died December 5, 2004 and life came to a halt for us... suddenly all of the family (from both sides) returned to their lives. Life seemed to be going on without us… I was very depressed and couldn’t think of anything except him. I decided that I had to pull myself out of it and be strong for my son… I had to focus on what we had and not stop my son’s life because I couldn’t let go of what I no longer had. I didn’t look at anything that talked about cancer, didn’t write about cancer, didn’t go near anything that reminded me of this ugly disease. Until now I still haven’t looked at old family movies or photos. I guess we all deal with things differently but this was how I knew I could get through this. Tariq received word in the beginning of January 2005 from New York Film Academy that he was welcome to join this year’s program. So I forced the issue with him. He didn’t want to go. I think he felt that if he were to continue his life, having fun and doing things that distracted him from his grief, that in some way he was betraying his father or his father’s memory. Perhaps this was my problem as well. So I made the arrangements for us to spend the summer in Florida. NYFA’s summer program has many satellite sites, one of which is MGM Studios @ Disney in Orlando. But we weren’t scheduled to leave until the end of May. I wasn’t sure how we would get through the next few months. I had let Tariq take the semester off from classes, so we were strictly home schooling. Looking back, I think that was a mistake, but he had been through so much. I didn’t want to put too much pressure on him. The thing is, is that I forgot how much of a positive distraction school had been through the whole ordeal. It gave us a reason to get out of the house and not let the days pass us by. During the next couple of months, my mom had been after us to move to Charlotte, NC at the end of the summer in Florida. I, at some point, relented. We left Connecticut in February and headed south. When I got to Charlotte, my mom took us out to look around at houses. I wanted to buy a house but housing was so expensive in Connecticut. We had looked at 2 bedroom condos before Ahmed passed away that were selling for $695,000. I couldn’t believe it when I arrived in Charlotte and found beautiful, large homes for less that $200,000. And brand new houses at that! I was hooked. I felt that we would be making a good move. Housing would be more affordable and we would be close to my mom and sister. They sold me. So I kept looking but perhaps there was too much to choose from or that I didn’t know the area well enough. So I returned to Connecticut with the intention of packing up the house and having the movers take everything to storage. I figured that during late spring and summer we could make a few more trips to Charlotte and eventually we would find something. We did make several more trips to Charlotte but in August we chose an apartment and kept looking around. Nothing “felt right”. Life is so hard for me now. I continue to want to turn my head to my best friend and talk to him about everything, find out what he thinks. But when I look around for him I am overwhelmed by the fact that he is gone. I get this feeling that comes over me from head to toe. It feels like the day we were diagnosed. It feels like a truck hit me. It feels like the day he died. It feels like I lost my best friend never to see him again. It feels like every inch of me is burning, twisting and turning. It feels like hell. Then I begin to cry. Finally, in November 2005, we found a townhouse that we like enough to just get it done. I thought that if we moved into our own home with lots of space (2400sf and 2 car garage) we would at last feel “settled”. I don’t know when I became naïve during this treacherous journey. I have always been known to be smart and on top of everything. Suddenly, I feel like a lost soul. I was cautiously optimistic though. I knew that at least we would be closer to family. Having my mom and sister around a lot would be a tremendous distraction. Only it didn’t happen that way. We officially have the movers move us into our new house and suddenly everyone has their own life to live. No one has time to socialize. No dinners, no lunches, no nothing. My sister is so busy with her friends and job that she never even returns calls. My mom is constantly running around shopping and socializing and has her own routine. We hardly ever see them. When we do, they are always in a rush. I commented once about it and was told, “I hope you didn’t move here for us…”. Oh my God. What have I done? I am devastated over all of this. I decided in January 2006 that if Tariq and I maintain our own routines and not depend on anyone for anything then life would stabilize somewhat. I don’t know if I am kidding myself or what, but I KNOW that I would NEVER have chosen to live in North Carolina if it hadn’t been for the desire to be closer to my family and the fact that THEY persuaded me. I know I started doing the “poor me” thing which I absolutely hate. So I started sending my resume out. I took this position in the hospital, reluctantly. I really wanted a job in mother/baby but they steered me to a cardiac floor instead. I started orientation there on Monday and by the end of the day I was in tears. I didn’t realize how difficult it was going to be for one. My “first day” back to work since Ahmed was well. Maybe I have held onto the feeling that he is still with me if I don’t change my employment status… I don’t know. I know this is all crazy. I hate the way everything has turned out. I hate North Carolina. Anyway, at the orientation, they kept having the group of new hires get into small groups and perform skits based on patient care and customer service. I didn’t know how to react. I felt tears coming to my eyes more than once. They showed a clip from “Terms of Endearment”. It was that scene where Debra Winger is dying from cancer in her hospital room and it is time for her pain meds but the nurses keep putting her mother Shirley McClaine off. They told her they would get to it in a few minutes and “sorry ma’am it’s not my patient”. Shirley McClaine gets really outraged from their responses or lack thereof and starts circling the nurses’ station screaming that it was time for the shot, “give my daughter the shot!” Well when the clip was finished, they asked the group if the mother was justified in her behavior. I was horrified that I was the only one who replied that it was. I said the nurses, for one thing, should not have been so non-chalant about the situation and that everyone reacts to situations differently. I felt that the nurses should have put themselves in the patients/families situation… I was so angry to hear the other responses. Some said she should have “contained” her anger and acted “professionally”. Some said she should have been more patient. Others said that the patient should have asked for the meds and not the mother. Their whole attitude about how the family members should be treated or are perceived was shocking. Actually, it was appalling. I felt so bad that I was “one of them”. I didn’t want to be. I hated the way Ahmed was treated during his hospital stays. I hated the way nurses are thinking. I hated feeling like I was alone in my position that the patients and families deserved kindness and understanding. That is our job as the healthcare professional to recognize that everyone deals with illness and difficult situations differently and to allow them the space to be “angry” if they needed to be. I hated the fact that I saw so much lack of compassion then and now. I hated knowing that there are nurses out there that have attitudes that they shouldn’t have and that perhaps shouldn’t even be nurses. I didn’t realize that I was still so angry. Now as if that wasn’t enough, my recruiter had misled me re: the unit I would be working on. They decided to put me on a different unit without asking me because they had a “greater need”. Oh and by the way, “your health insurance is going to cost double and cover half of what I told you because I wasn’t aware of the new plans”. Needless to say, at the end of the day, I decided not to take the position and began my search over again. I have never, ever done that before and felt as though I was copping out. But it just didn’t feel right. Yesterday, I spoke with a recruiter for a home care agency and have an interview with them tomorrow. I think I need to stick to homecare for now. That is what I was doing before we were diagnosed. It is really a rewarding position. You can act as patient advocate and you really feel like you make a difference. Maybe if I fight for my patients, it will be therapeutic for me. I don’t know. I don’t know anything anymore. I thought this would get easier…. but it doesn’t… it just gets harder.

Ok, now you guys have got me thinking...... I want to ask more survey questions but I want to keep these questions separated from the other survey. I know this is asking alot from everyone but the info will be put to good use. If you are uncomfortable discussing your situation here, please feel free to PM or email me for a copy of the survey and you can email it back. Thanks in Advance. PLEASE REMEMBER - I as much as anyone know how valuable LCSC is and has been, however, I am trying to determine what ELSE is out there and ALSO HOW people were fortunate enough to find resources such as LCSC. Mostly the questions below are referring to you/your community locally. 1> How did you find LCSC? PLEASE EXPLAIN 2> When you were diagnosed what kind of info about LC were you given (nothing, brochure, counseling, books, video/dvd, resource lists)? Who provided you with this info? 3> What is largest city closest to you? Is there a live support group specific to LC for patients? caregivers? family/children of patients? 4> Where and how were you diagnosed? Who told you of your diagnosis? 5> What do you think could have been done differently/better (re: your dignosis) and how you were told/educated about LC? 6> How many other Lung Cancer patients have you met face to face in your community through MD/hospital, etc...? 7> How many < Lung Cancer > FUNDRAISERS have you seen/heard about? Please be specific as to what they are and where the organization is? Names, address, telephone, website & brief info would be great? 8> Have you had difficult getting TREATMENT or MEDICATION because of LACK OF MONEY or LACK of INFORMATION? If so, please explain in detail. 9> Were there treatments available to you elsewhere in the country but you were unable to travel due to cost or difficulties related to your illness? 10> Do you have enough help at home? Please explain re: family/spouse/friends/nurse/CNA/other.... 11> What types of things would make you/your home more comfortable with relation to your LC? 12> What has been your most difficult experience throughout this ordeal (OTHER THAN DIAGNOSIS) ?

Hello, I would like to take a poll. My 41yo husband passed away from this dreadful disease on Dec 5, 2004. I haven't posted here since about then.... it has been a tough road for our son and me.... but we ARE still here.. The reason for my poll is that I want to start a foundation in my husband's name and I would like it to serve the best purpose possible. So the question is: If you could dream up any type of foundation or ANYTHING that you think might have helped you SOMEHOW get through this a little easier (SOMETHING THAT DOESNT EXIST OR IS HARD TO FIND), what would it be? Think about what your personal and family needs have been as you have made your way through this fight.... what would make it better? was there info you needed but didnt get? Were there Treatments you were denied because of lack of money. Are you finding enough info from legitimate sources re: lung cancer diagnosis and treatments...... I mean ANYTHING you can think of will be of great help to me..... What do you wish was out there but isnt or isnt easy to find.... Thanks in advance for you input.... My best wishes & regards to all of you....I know first hand how painful this is. Please give me serious answers, I know we all would wish for a cure, but I am looking for some guidance to begin this foundation in my husband's loving memory. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ WITH EVERY DIFFICULTY ~ THERE IS RELIEF ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I know that this is probably the wrong place to post this but I could not bring myself to post anywhere but where I usually do. I appologize in advance. Last Sunday evening I lost my best friend in this world. The love of my life and the wonderful father of our son slipped away from us. I am devasted. My heart feels as thought it has been torn away and continues to ache. I wanted to let all those who have supported us on this incredibly short and difficult journey know why I have not posted and to quickly thank everyone for your continued prayers. Please understand that I am barely able to type this and when I feel better I will return to share more with you..... I love you so much Ahmed... you have no idea how much Tariq and I are missing you..... I know you didn't want to leave us especially this way.... You will NEVER leave my heart, thoughts, and prayers. May Allah bless you and take you to heaven... May this life pass quickly for us so that we may all be together again.... All my love forever......Lisa The following is an excerpt from the Holy Qur'an Sura Inshirah (The Expansion) Chapter 94, Part 1-8 In the Name of Allah, the Most Gracious, the Most Merciful. 1. Have We not expanded thee thy chest? 2. And removed from thee thy burden 3. The which did gall thy back? 4. And raised high the esteem (in which) thou (art held)? 5. So, verily, with every difficulty there is relief : 6. Verily, with every difficulty there is relief. 7. Therefore, when thou are free (from thine immediate task), still labour hard. 8. And to thy Lord turn (all) thy attention. Remembering Ahmed M. Belal June 25, 1962 - December 5, 2005 ........................................................................................................

dear margaret, i was thinking about you all weekend... hope everything gets better for you and your husband.... glad you got him to the hospital.... sending prayers your way WITH EVERY DIFFICULTY ~ THERE IS RELIEF.....Lisa

Thank God for every second we have together! Have a very Happy Thanksgiving EVERYONE !!!! WITH EVERY DIFFICULTY - THERE IS RELIEF ........ Lisa

Dear Val, I am so sorry you have the need to be a part of this group. However, that said, this is the best group of people you will find... No matter how long and hard you search the net for answers, information and support, you won't find another support system that can equal the love, understanding, prayers and all around inspirational spirit that you will experience from ALL of the individuals here. This is an incredible group....and if you continue to come here you will see for yourself.... when you drop off the board for a while, they come looking for you! how's that for an extended family??!!?? Welcome and best wishes and prayers for you and your family. WITH EVERY DIFFICULT ~ THERE IS RELIEF..............Lisa

she flew!!!!!!!!

again , i am overwhelmed by the # of inquires and offers of support.... Thanks again to everyone..... So anyway, as I said, my mom, sister and 81 yo aunt arrived on the 2nd of November…. THANK GOD! My mother in law, still sleeping over, was shocked when she came out of her room (well my room actually, We gave her our bed while Ahmed and I slept in the living room on sofas)…. She was completely shocked though to see my family…. Because although Tariq, Ahmed and I knew they were coming, I hadn’t told anyone in Ahmed’s family…. I figured if they knew that maybe they would try to cause more trouble in the interim. So once my mother in law realized who was here and that she no longer had free reign of her son’s home, she stayed in my room for the next 2 days…. I can’t tell you how peaceful it was. Now…. my family is the exact opposite of Ahmed’s in spite of sharing the same religion…. My family is fun and outgoing and always finding a reason to laugh. We are half Irish and half Italian and usually a very lively bunch. Needless to say, the atmosphere significantly changed, I felt like I finally had a break from the depression and crying and devastation that Ahmed, Tariq and I had been experiencing with the in laws (or is it outlaws….sorry). My mom set right to work and kept on top of all the laundry…. My sister took over the kitchen and did all the cooking… what a relief…..help at last…..quite a contrast to a mother in law who comes out of my room at all hours of the night (and I do mean ALL NIGHT LONG)… trying to wake up her son and me….and between the IV beeping all night and her nonsense, I can tell you I was not very social at 1am, 2am, 3, 4, 4:40 etc…. and I don’t have to tell you that it was even more infuriating when Ahmed would tell me WHY she would wake us up…..SHE WANTED JUICE, she was thirsty! And after she got her juice she wanted to talk about $$$$$$$…. anyway you get the picture, I won’t dwell. So now, I have sincere, loving, fun, optimistic HELP. Mom goes to the grocery store…. My Mom and sister take Tariq out whenever he wants to go….Blockbuster’s stocks have probably gone up from all the movies Tariq has been renting… how nice for him…. And now he has my sister to play with, although she is 31yo, she is like a kid, loves computers, video games, Star Wars….anything kids like…. She even resembles a kid, she is so tiny that when my mom recommended her primary care doc to her, the doc told my mom, “I’ll see her for this problem, but after this she’ll have to find a pediatrician….” That was this year!!!!! It’s so nice to have her here…. Now Tariq has endless attention….. Oh and my 81 yo aunt just simply adds sunshine to the whole situation (and a little direction to keep us all in line). So all was quiet for a couple of days, I am sure my mother in law notified the rest of the bunch that there were now reinforcements present and stunned or not I don’t think they knew how to react. Good for us…. For the first time in many weeks Ahmed was smiling and laughing at all the joking around…. And even though my mom brought all her pets to avoid exorbitant vet/kennel fees, even that served as sort of a therapy to us all…especially since we don’t have any pets of our own. Ahmed keeps reaching to pet them and usually has a big smile on his face….THANK GOD. Before I move on, I want to say one last thing about my family and their effort to help me. They put their entire lives on hold for us, so they could be here with us…. My mom and sister work as CNAs ( Certified Nursing Assistants) for an agency so they have some flexibility….but here they are not working, and they never thought twice about it….they have suggested they could come before but I tried to hold off because I know how much they are willing to sacrifice for us and I don’t want to take advantage of that. Anyway, the rest of the Ahmed’s family has kept their distance for the most part, which although this makes my life easier, I am disgusted at the fact that they didn’t even call to see how he was….my mother in law stayed and after a couple of days came out of the room….she seemed to warm up to my mom and everyone and I actually saw her smile a few times….but after a few days she was back to her old tricks and Ahmed told me every time she sat beside him she would ask him for money or go on and on with the guilt trip attempting to force him to return to Egypt with her. Ahmed grew increasingly agitated in her presence and begged me not to leave him alone with her. When I needed to go to the bathroom I had to be sure my mother or my sister stayed sitting beside Ahmed to prevent his mother from initiating any conversation that would disturb him. Through all of this I am amazed at how that family never asked about Tariq either….never even asked him how he’s been holding up……when they do speak to him it is usually in a harsh tone. So to get back to the pneumonia…. After my mom arrived she was able to shield me from some of those distractions long enough to get back to the doctors etc…. On the Tuesday (November 2, 2004) after the Friday (October 29) that we returned from Fox Chase I contacted Ahmed’s primary care oncologist, Dr. C. I expressed my concerns that he hadn’t eaten in over a week and was growing increasingly weak. He told my that he had spoken with the surgeon from New Haven, Dr. F., and that Ahmed was dying and had only about a week or so left to live (it is important to note here that this was over 3 weeks ago)…. He said that Ahmed was not going to get better even if he got the proper nutrition…. I requested that he consider a feeding tube for Ahmed or TPN or something…. I felt that it would at least give Ahmed enough energy so that he could sit and hold a conversation with us. He outright refused. He said that Ahmed probably had a fistula between the trachea and esophagus and that the last CT scan showed that the cancer had spread throughout his body and that Iressa was no longer working. He said “There is nothing else that can be done and I am NOT going to address nutrition here…. You want him to live but he is not going to….you just need to accept the facts and keep him comfortable…. You should increase his morphine to give it around the clock instead of as needed.” Now when I reminded him that, although we had the injectible morphine he had previously prescribed for Ahmed, Ahmed does not like the effect and adamantly refuses it. He told me that he was going to have the social worker contact me about getting me some help in the form of hospice….and while it is true I have been a homecare nurse for a while, my background is in ER, OB/GYN and Mother/Baby nursing. The only thing I know about hospice is that it is used in end of life cases and that in order to qualify you must stop all treatment and if you change your mind later after you have had hospice for a while, for instance if maybe some new drug comes out and it is worth a try…. Well you can forget about it because the insurance doesn’t have to pay for treatment after they have paid for hospice…. I told Dr. C. that I did not need hospice and that we now had a lot of family around to help and support… and not just ANY family but remember my mom and my sister have been CNAs for many years and my sister is 2 exams away from HER nursing license as an RN. He told me that I needed to stop thinking about myself and what was good for me and to think about what was best for Ahmed. He said he absolutely needed the morphine to make him comfortable…. I again told him that my husband refuses it, that he has not had much pain and the pain he does have is controlled by percocet… He said that is why he thinks I MUST get hospice in here because they can convince him to take the morphine. I was getting more and more frustrated with this conversation….and came right out and said, “ I called you to address my husbands nutritional status and request help for that in order to give him more energy not load him up on morphine so he sleeps all day….” I told him we will not believe the surgeons “take” on things until we hear it from another opinion…. After all I have 2 very different opinions from the same week…. Dr C said in his opinion Dr F was correct and that I needed to “…. accept the fact…. and stop trying to keep your husband alive.” He said “I don’t think you understand the reality of the disease.” I told him I understand very clearly the reality of this disease…. Unfortunately I have understood this since April when we were diagnosed…. that is not the issue here…. Should we have stopped trying in April because of “the reality of this disease”??? Why then does ANYONE/ANYWHERE ever accept ANY KIND of treatment if they have been diagnosed with this horrid disease…. If I have to answer that question I will say, “Just because you are diagnosed with a disease such as this, it doesn’t mean your dying…. I have told my husband multiple times whenever anyone says he is dying…. I am looking at you now and what I see is someone LIVING. LIVING with Lung Cancer. LIVING with the reality that lung cancer is a terminal illness. LIVING with all the symptoms and physical changes this disease causes. But the fact of the matter is that right now at this very moment you are none-the-less LIVING. LIVING, BREATHING, COMMUNICATING, ADVISING, TEACHING, COMFORTING and LOVING. I call that LIVING! “ The real issue here is I cannot sit by and watch my husband starve to death…. I have had patients in the hospital on feeding tubes and TPN that had no brain activity yet I am given no valid reason why my husband cannot receive the same treatment…in spite of the fact that he is alert and oriented and begging me not to give up on him and saying “…if only I could eat, maybe I would have the energy to sit up…” I told Dr. C. that until God decides it is so…. I will never give up on my husband. I told him if we were talking about comfort measures then food and nutrition should be considered a comfort measure…. Am I wrong here???? He told me that it would not provide comfort and would only PROLONG LIFE!!!! Who is he to decide how long life should be???? We have never expressed to him that Ahmed intended to do anything but fight this disease until God takes that right from him…. NO DNR order was ever discussed never mind signed. Why does this doc think he can take these decisions away from us??? The conversation with Dr C ended with me feeling like “Now what do I do?” I felt like something was wrong here…. I felt like we lost our doctor….after all he was refusing to treat Ahmed…. He also had refused to give Ahmed blood or Procrit in spite of a hemoglobin level of 8. That might also have contributed to his weakness and decreased energy…. You think? Without resolution and without a doc who had compassion or respect for Ahmed’s wishes, I couldn’t help but feel alone, abandoned. I immediately called up to Boston and my mom Fed Ex’d all the CT scans from August to present to Dana Farber in Boston. I spoke with Dr. H after he reviewed ALL the CT scans…. He was so excited to hear from us and especially because the Iressa was working. He said he would never have stopped the Iressa (at this point Ahmed hadn’t taken it for 12 days) He agreed with me that nutrition should be addressed possibly through a G tube or TPN. He was willing to see Ahmed and assume responsibility for his care. So we made an appt to go up to Boston. On November 8th, my aunt got up at 5am to go to the bathroom and while she was entering fidgeting for the light….Ahmed’s mother came up behind her (I guess in an attempt to offer unsolicited help in finding the light) reached her arm around the front of my aunt without ever saying anything and she scared her…..my aunt fell to the floor and began crying for my mom…. Ahmed’s mom tried to quiet her down and help her up….When my mom got into the bathroom, Ahmed’s mother was saying my aunt got dizzy and fell…. My aunt told the other story…. In any event 911 was called, my mom was off to the ER with my aunt only to discover a hip that had broken in 3 places. Surgery was performed that evening and my aunt has been in the hospital ever since. My mom has been running back and forth so she doesn’t feel abandoned up there. In the meantime, Ahmed’s mother was causing him to get more and more distressed and he told me that it would be better if she weren’t here. So I used Boston as an excuse to bow out gracefully of a difficult situation. I had my sister explain to her (she speaks better Arabic than I do) that we had to take Ahmed to a doctors visit at a hospital that was 5-6 hours away and that she needed to call Ahmed’s older brother to pick her up to go stay with them until Ahmed was feeling better. Now in spite of all that has happened I felt guilty, because after all this is Ahmed's mother..... I hate this whole situation.... Call me crazy, but I was the one who pressured his family into arranging for his mother to come.... I was afraid if anything happened that he needed to see his mother.... I had no idea this would happen. Well, you know that all h**l broke loose. Calls were made back and forth for several hours while my mother in law paced the house, wailing and waving her hands, talking to me a mile a minute in her language, I didn’t even try to understand her…. It was obvious she was not pleased with me. She called my brother in law and he was refusing to come get her. He told her that she should insist on coming with us…. But with the help of my family, I stood my ground and someone eventually came to get her…. I am not sure whether it was my brother in law or Ahmed’s cousin. When they got here, they called from a cell phone and told her to wait outside…. No one ever asked how he was doing or inquired about the details of the doc in Boston. Hmmm…. So now I had a lot of time to get things done…. I got on the phone and ordered a hospital bed, wheelchair and shower chair…. Being a homecare nurse, I know a lot of the local resources so it makes it easier to just do it myself…… however, when they called to get the oncologist to sign the orders….he was refusing… he had the social worker and 2 nurses call me from his office saying that I MUST get these items through HOSPICE…. WHAT !!!!?????!!!!! I am a homecare nurse and I have NEVER seen such a thing…. We have patients and their families all the time making calls for themselves…. We invite it….. After a couple of hours of what felt like high pressured sales pitches for accepting hospice….these people are relentless….. so I would have help “accepting” that my husband was “dying” and that hospice would help me to “understand why heroic measures should not be taken”….. All of these calls are coming out of the med onc’s office mind you…. Now I don’t know, I have only been an RN since April 2003, before that I was a paramedic, and before that I was a medical assistant for a few years in OB/GYN…. During nursing school I was a student nurse on a mother/baby unit…. So I guess in many situations I am somewhat inexperienced as an RN. As a HUMAN BEING though, I find it hard to believe that the industry to which my career belongs, could think so differently and seem so cold. I know that from their perspective they are all well meaning, but well meaning or not I wish they would HEAR my husband’s wishes and RESPECT them. I wish they didn’t view faith in God as not accepting of the facts…. I wish they didn’t try to take away every ounce of hope you have at every corner…. I wish they would leave our hopes and prayers intact until God tells us it’s over…. After all it’s all we have left. I tactfully explained to all of the sales people that we were not interested in talking about hospice and that I had plenty of help and emotional support at home…. I attempted once again to address the blood and the nutrition issues to no avail. Over the weekend Ahmed was doing a little better and trying desperately to drink some Ensure shakes…. The first day he managed to get 1 whole shake in even (350 calories) though it took an entire day…. Sip by painstaking sip….. too weak still to hold the cup…. I sat beside him most of the day, holding his hand and offering him sips…. I told him that if it was too difficult to swallow then try to hold the sip in his mouth and “absorb” it slowly…. It seemed to work…. It made Ahmed optimistic that maybe he could get this nutrition if he tried…. My mother, Tariq and my sister all took turns offering him sips to give me breaks…. That afternoon Ahmed coughed up something that looked fleshy….. it was different than anything we had seen previously…. When I called the on call onc, he said to save it in a sterile cup in the freezer and then bring it in on Monday to send to pathology…. So I did….. but when my sister brought it in on Monday , Dr. C. told her he was not going to send it because it didn’t matter what it was….. he told her, while she was standing in the hallway, that “Ahmed is dying, you people want to make him live but you’re not going to.”…. my sister continued to inquire why he was “writing us off”…. He got mad and told her to get out of his office….. The next several days Ahmed continued to increase the amount of shakes , sip by sip, and over this past week he has even started to eat solid food again….. THANK GOD he is back up to about 1500 – 1800 calories/day…. I would like to see him get to 2000+ but for now I am grateful….. Mother in law came to visit last Sunday, she stayed about 45 minutes, crying and wailing the whole time…. Leaned over my husband as if to kiss him and started again….. my sister came to sit beside me and Ahmed and then my mother in law walked out of the house crying…. My brother in law got up and said his mother was returning to Egypt on Friday…… They left and no one ever called all week to see how everything was….. On Friday morning, I called them to see if they were stopping by on the way to the airport, (I know I’m looking for it) but got an answering machine…. When they called back, I let Tariq take the call…. He told me they said that Ahmed’s mother was leaving on Sunday (tomorrow). So we are anxiously awaiting the final visit…. In the meantime…I guess they must have told Ahmed’s younger brother in Egypt that I did SOMETHING wrong because I have been getting threatening emails and phone calls stating that I better call Egypt to explain myself or else….. because I will someday have to meet them face to face…… for the first time in my entire life I feel afraid…. I don’t know what they are capable of….. they do scare me….. I am just praying that they all leave me alone….. I have held back from calling the police so far because I think it would only upset my husband and the whole situation....I guess if I felt threatened in their presence I might not have a choice.... but it is not something I would do easily.... Thursday I took Ahmed to Boston….. we saw Dr H, the med onc at Dana Farber and Dr M the thoracic surgeon…he is actually the head of the lung transplant unit there…. Anyway they both came in a spoke with us….. They said that disease DEFINITELY had not progressed in fact there were only a couple of small nodes in right lung that “we would not worry about in a hundred years”…. They said they did not see any evidence of the mets to the liver, bone or adrenals that had been previously seen…. They said they absolutely did not agree that Ahmed was ready for hospice…. They were very excited about the response to Iressa…. They said this was a fabulous response…. They told us that “the problem is that perhaps Iressa worked too good.” The area that had previously been diagnosed as an abscess was actually a cavity where the primary tumor had been….Iressa shrunk the tumor so effectively that it left this raw, bleeding cavity that pus and secretions continue to accumulate in…. This is our real problem according to the Boston docs…. They said that the walls of the bronchus leading to the lower lobe had deteriorated with the deterioration of the tumor which had previously invaded it and therefore the airway is compromised…. They said surgery would not be possible because of the risks. They told us that our best hope is that if scar tissue can form and fill that area in then eventually the pneumonia would be able to clear… the one concern they had was that on previous CT scans you could see the involvement of the pulmonary artery…. It has never been very clear as to what extent the artery was involved…. They say it is difficult to say whether the cancer was pressing on the artery or had actually begun to invade it…. The concern is that if the artery had been extensively involved and the Iressa continues to work so well, then it could potentially take the walls of that artery with it which of course would not be good…. However when they look at this latest scan they cannot see that involvement so they said we can just hope that there is nothing to worry about… We are going to stay with the docs in Boston for now…. They are suggesting working with the local onc… but we are reluctant to trust anymore…. Maybe we will look for a new local onc, not sure yet…. PT will start on Monday to get him moving and up from the bed to help mobilize the secretion in an attempt to clear the pneumonia and they were pleased for now about the amount of calories Ahmed is managing to get in…. Well that is pretty much where we are at for now….. Much awaiting tomorrow’s final visit (hoping she doesn’t change her mind and decide to stay)….. I will try to post as often as possible, time permitting…. It is much easier to do this day by day than to try to recap the last month….. Anyway, thanks again for all of your support…. I only hope I am able to give back a fraction of what you guys have given me…. WITH EVERY DIFFICULTY ~ THERE IS RELIEF………Lisa

peggy, i pm'd you my phone # Lisa

The last several weeks have been so difficult.... I didn’t know if I had the emotional strength to write anything today but when I read all of your incredible messages of support, I felt the need to update you and THANK YOU (everyone) for all of the posts and PM's. I am overwhelmed by all of your support. On Wednesday, October 23, we were scheduled for an appt with the thoracic surgeon ( Dr.F )to discuss a possible bronchoscopy but Ahmed got really sick on Tuesday night and I had to take him to the ER... I took him to New Haven to the hospital where the surgeon is affiliated...I thought this might expedite the surgery to clear the airway. My son, Tariq, and I had been up for the previous 2 nights with Ahmed and the night in the ER meant 3 in a row with no sleep.... They repeated CT scan, blood work and some x-rays..... The surgeon came in at around 3pm and we explained that Ahmed had been coughing up increased amounts of blood for the past few days and had been unable to eat…. Based on his recent pneumonia the med onc ( Dr. C ) and the infectious disease doc (Dr. Y) recommended that we consult Dr. F for the bronch with a possible laser ablation to clear the airway and maybe we could be done with this post-obstructive pneumonia once and for all. Dr. F said absolutely NO WAY would he do a bronch. He said he was afraid Ahmed would not wake up from the general anesthesia and he was not willing to risk it. He called me into the hallway and told me that I should consider hospice because we didn’t have much time left, possible a week or two. I asked him what he was basing his decision on and he said that according the CT scan performed that day that disease had progressed significantly and that there was nothing further that could be done. Of course, you know me, I flipped out and kept questioning how could this be since we just had a fabulous CT scan on September 23. I had all the CT scans since August including the reports. I told him I would appreciate it if he took a look at our scans in order to see the pattern of the disease….. I could not understand how he could determine “significant progression of disease” when he was comparing that days CT scan with one he had ordered for Ahmed back in the beginning of June…. If you compare those, then of course you will see progression…. But I believe he missed a big part of the puzzle. He adamantly refused…. in spite of the fact that Ahmed was crying and BEGGING him…..Ahmed promised him he wouldn’t hold him responsible and pleaded a case like I have never seen before. It was heart wrenching to hear him… “…. but I have my wife and my son, please I am begging you, please….”. In spite of my multiple attempts to show him the scan we brought he kept brushing me off, telling me it wouldn’t make a difference….. he offered to admit Ahmed for IV hydration but Ahmed and I talked privately and asked to be discharged….after all we had been getting hydration in the home…. And besides we needed another opinion…. We have learned never to accept just one…. So we left New Haven, headed home to pick up some clothes and then Tariq, Ahmed and I hit the road bound for Philadelphia….Fox Chase Cancer Center….. At around 11:30pm we arrived only to find that Fox Chase did not have an ER and we had to go to the hospital next door… We were lucky that we had been there once before for a 2nd opinion or else they wouldn’t have even seen us….. the whole process suddenly seemed unbelievably difficult and I realized that perhaps we hadn’t thought it through…. Ahmed was admitted to Fox Chase hospital and was given a bed in a double room with a roommate. I was concerned immediately because he always makes me promise not to leave him…and I have not left his side since diagnosis in April ’04. The first night the nurses were very accommodating and made Tariq and I very comfortable at Ahmed’s bedside. The next day, it was hurry up and wait…. Probably a result of my poor planning…. Because I didn’t call ahead to let the docs know we were coming, they just had no clue what to do… Unfortunately when they finally got it together they decided that they also did not need to look at the scans I brought and chose to repeat one of their own with “ thinner slices and different angles”. The problem was that by the time they decided what to do it was after 6 pm and they didn’t perform any testing after 5pm….. when I learned this I started questioning the type of services available… NO ER, NO 24hrs CT scans or Xrays, NO procedures could be performed in eves or weekends….. HMMMM…. Made me think….. what have we gotten ourselves into ….. I thought this place was state of the art…. Obviously I was wrong…. Now I was thinking that even if they decided to go forward with the bronch…. Was it even a good idea to have it done here? It didn’t even matter, because the next morning Dr U the pulmonologist came in and said NO WAY because not only was it too risky but he didn’t even think it was necessary…. He said the airway was not completely obstructed… He discharged us on Friday, October 29….. the problem was we still had no resolution to why the pneumonia was not clearing up and now we had 2 different opinions….. We decided that we needed a 3rd opinion….. that’s where Dana Farber in Boston enters the picture…. The only thing was ….. Ahmed was too weak to make the 8 hour trip from Philly to Boston and besides we learned our lesson about not calling ahead… so we went home….. We figured we would wait out the weekend and call Dr H at Farber on Monday. I am going to stop here for now or else I won’t get this posted tonight….. There is much more and I will try to get part 2 online tonight as well…. Please understand why I have not had much time to post….. or even browse the net….[/color] Again thank you everyone….. you all have no idea how great it feels knowing how many people are supporting you, especially those people who know what you are going through….because they are living it too….. Lisa

Dear God, Please Help Us! I have had so much difficulty lately with the computer and have not been able to post.... Ahmed came home from the hospital on Oct 5 with IV antibiotics...... for the post obstructive pneumonia and 4.5 cm abscess he was diagnosed with in the hospital. The IV therapy has been a challange ..... he has been getting 1 gram of Primaxin every 8 hours .... @ 12am, 8am, 4pm..... each dose takes about 2 1/2 hrs to infuse because he was getting nauseated when it was running faster..... As of last Wed.... he has also been getting IV hydration fluids....all of which I have been administering.... The IV company dropped off the supplies on the first night a nurse showed up to get signatures from us for treatment and insurance purposes and that was the last time we saw a nurse.... I have been changing his port-a-cath access and everything... When I questioned the IV home care agency.... they said " but you are a nurse arent you? " ..... God help me if I wasn't..... I am having a hard enough time with this.....i dont sleep more than 3 hrs at a time because the pump is always beeping and I have to physically disconnect the hydration fluids to connect the antibiotic and vice versa..... I am a home care nurse myself....i do not understand how non-medical patients and their non-medical caregivers are doing this stuff 24/7.... This weekend was so difficult... Ahmed has declined significantly and the tumor that was in the airway seems to be obstructing at a greater degree....the docs think that as the pneumonia and abscess are breaking down from the antibiotic that the thick secretions are getting hung up on the tumor in the airway causing a bigger obstruction..... he is going to see the surgeon tommorrow....hopefully to get a bronchoscopy ASAP.....hopefully the surgeon can laser out this tumor again and give him some relief.... we shed a lot of tears this weekend....he thinks he is dying an keeps talking about money.... i am 36 years old with a 14 year old son.... I AM NOT READY FOR THIS !!!! I thought things were going good with Iressa, the doc decided to stop it again as of yesterday in case this pneumonia is related.... we may be able to begin again over the weekend if the surgeon rules out interstitial pneumonitis.... Ahmed's hemoglobin yesterday was 8 and the onc wnats to give him a blood transfusion on Friday.... we had another CAT scan this past friday....only the preliminary report was back, final due tommorrow..... the prelim seemed to imply that disease appeared the same or slightly worse than the last scan..... i don't understand how Iressa could work so Fabulously in the first 4 weeks then turn completely around so fast.... Ahmed was having trouble breathin earlier tonight.... i called the onc and he was asking if we wanted him intubated if things got worse..... I said " Of course, HE's FULL CODE!"....I STILL CAN'T BELIEVE ALL THIS IS HAPPENING! What happened to us??? I feel like I am just melting away......God PLEASE HELP US..... I can't stop crying... I am so sorry if I am depressing anyone....I just needed to vent.... Lisa

Ditto to everything above!!! Hurry Back! ......Safely! Lisa

Thanks for all the support guys..... here is a quick update before i run back up to the hospital..... ahmed is feeling much, much better.... he is not so breathless when he is talking.... and has been up and around in the hospital..... the diarrhea stopped at 12 noon on friday and they let him start back to Iressa last night.... so that's pretty good only two days off.... also the infectious disease doc came in today and said that from the sputum culture they were able to isolate some gram negative rods.... he thinks we will have the preliminary report tommorrow.... but he said that he looked at it in the micro lab himself and he is guessing it will either be klebsiella or enterobacter..... this is actually good news..... b/c in spite of the fact that he has been coughing up this horrible muddy looking mucous with a strong odor for about 7-8 weeks now, all of his sputum cultures either came back insufficient or negative ...... so we hope they are finally getting to the source of the problem.... Dear Don, i had forgotten about the fact that Iressa can cause the pneumonia, thanks for the reminder.......it prompted me to go back to iressa's website and do a little research on the matter.... and THANK GOD they are telling us that they believe that this is NOT the interstitial lung disease that iressa can cause.... they said that this type of bacteria that they see is normally present in the mouth, saliva and GI tract.... and that it may be possible he aspirated some of it a while back..... since he does still have a mass in the right bronchus, this was probably more of a post obstructive pneumonia than anything else.... the infectious disease doc thinks we will come home on Tuesday with a home care IV nurse.... he expects ahmed will remain on IV antibiotics for 3 or 4 weeks.... well back to the hospital........... thanks again everyone......I will keep you updated as I can..... Prayers for all............. WITH EVERY DIFFICULTY ~ THERE IS RELIEF.............LISA

hi .... i just took my husband to the Baylor University Trial @ Mary Crowley Medical Research Center week before last.... http://www.marycrowleymedicalresearch.com/ stage 4 does not rule you out , neither does brain mets.... however, they actually make the vaccine for GVAX from the patients own tumor.... they will not remove anything that will require general anesthesia to get to....2 different sites during there last trial actually lost 2 patients under general... so the FDA will not allow them to use it in this trial.... they like affected lymph nodes/ tumor in the clavicular or neck region.... or if the patient has a pleural effusion of 600 cc's or greater they can use that too.... We saw Dr Nemunaitis at Mary Crowley Medical Research Center.... he is in charge of the research mentioned at the Baylor University link you provided..... He told us that 14% of patients who took the vaccine they went from stage III or IV to NED.... and in a much larger % of patients they were at least seeing stability of disease... some as long as 2 years or more..... to find out if you qualify..... you should call Ned Adams, RN ( 214-370-1815) @ Mary Crowley or you can email him at nadams@mcmrc.com .... he works directly with Dr. Nemunaitis..... they are all wonderful there....good luck to you and hope you qualify..... WITH EVERY DIFFICULTY ~ THERE IS RELIEF.............LISA

Just stopped by home to pick up some clothes..... ahmed was admitted to the hospital last night ..... he was up all night the night before with severe diarrhea (from Iressa they think) and right sided pain around the level of the right lower lobe..... called the onc.... "STOP THE IRESSA" he said..... i flipped out.... he said we can restart when the diarrhea subsides.... i am okay now... hopefully that will be soon.... the worst thing was the doc was more concerned about the pain .... sent us for chest CT to rule out pulmonary embolism...... no embolism, THANK GOD.... but he does have a pneumonia and they saw a 4.5 cm cavity in the right lower lobe that is filled with fluid.... they said this was definately not on the CT Scan we had on the 23rd..... they think it is either an abscess or possibly an infection that started inside of a necrotic tumor in the process of the breakdown.... we saw tons of docs today.... all were impressed with the results from after only 4 weeks of Iressa.... and all were surprised that in spite of how bad the CT Scan from yesterday and the chest xray from today look ....Ahmed doesnt look "too bad".... he is not on O2 but is getting neb treatments.... I'll be back when i can to give an update.... WITH EVERY DIFFICULTY ~ THERE IS RELIEF...................LISA

Dear London Lad, Thank you for sharing your INSPIRING story..... It serves to remind us that while we get caught up in the day to day dr's appts and the like..... there are still many memories we can be making.... We just need to SLOW DOWN and take the time to make them..... Thanks again for the reminder..... WITH EVERY DIFFICULTY ~ THERE IS RELIEF...............LISA