Carleen

I know I'm late to the party, but I'm sending you prayers for a successful transfer and a happy healthy baby!!!

Hi Dar, I just want to say how sorry I am about your mom. It is so difficult to have to deal with this illness and the dark emotions it brings as she stares mortality right in the eyes. To say it is frightening is an understatment. Even my husband, who was a fighter and an upbeat positive person had moments of fear and anxiety. Especially the beginning. The first 1-2 months were so filled with tears and grief. One month is not a lot of time to process and deal with the feelings she is having. It is also not a lot of time for you to have had to adjust to this new situation as well. Give your mom time, and be gentle and loving. Keep providing her with stories of hope and successes, and in time they will sink in past the fear and give her a ray of light. Also the medications should help some, but they too need time. The average anti-depressant takes 3-6 weeks until it builds to full potency in the body. You've both been delivered a severe blow. Only time and love can heal this wound to her heart and her emotions as well as yours. Be extra patient and extra loving right now, she is hurting. Being loving is one thing in life you will never look back on with regret.

Hi Jen, Another possibility is acid reflux. Following radiation, it is not uncommon to have stomach upset and nausea. There can be an increase in acid production with causes the esophagus sphinters to tighten holding back the acids from going up. But, this makes it hard for food to go down as well. Keith was given prevacid following radiation because of acid issues and it helped immensely. Saying prayers for your Keith!

(((Don))) I understand exactly what you mean Don. I still don't feel like I'm a "single" even though I know that is how the rest of the world sees me now. The first time I had a doctor's appointment following Keith's death (about 2 weeks later), I was filling out the paperwork and I burst into tears because I had to check the widow box. One of the nurses came over and said I didn't have to check that, she crossed it off and checked married for me. That is what I am. I will always be married in my heart to Keith. In fact just recently I had to fill out another form that only gave the options for single, divorced, married, or seperated. No widow option. I stared at it for 5 minutes before deciding I couldn't check single, married made more sense to me. I can't imagine myself being single again. I still talk like he is here, I talk about him all the time, what he did or what he liked. Just 2 nights ago a friend came over and wanted to order a pizza from Pizza Hut, and I said no, Keith always likes Crossroads' Pizza better. It has a better sauce. I know it doesn't make sense, he isn't there to enjoy it. But the habits and lessons I've learned will be with me I think my whole life. I feel like this is just a bad dream and he is still at home waiting for me to return. I'm not single.

Hi Bobby, I'm so glad to see that so many people posted to help show you the worth of fighting this, and to strengthen your spirit. I could add my husband's story to that as well. He fought for 3 1/2 years, much longer than doctors thought he'd have and a lot more than he'd have had without treatment. And those years were good ones, with lots of laughter, love, and good memories. He worked full time up until about 6 weeks before his passing, but even not working he was walking, talking, taking care of himself and me up until the end. He even walked himself into the hospital, and walked himself out to come home to hospice the day before he died. I won't get into that too much because I think you get the point. I did see one comment a few times in your posts that I did want to address. You have this fear in you that each successive treatment will be harder and cause more suffering. I did want to tell you that although as time goes on, the body does not bounce back from treatment as well, it doesn't necessarily mean that she has to suffer more and more. There are a lot of really great drugs out there these days to counter the side effects of chemo. Although my husband's blood counts dropped lower later in treatments which caused him to take longer breaks between cycles, he really didn't suffer escalading side effects from treatment. In fact his hardest treatment was his second one. He had 2+ more years of chemo after which were all less painful to him. Really his progressing suffering was always due to disease progression not the cumulative effect of treatment. So, if the treatment can keep your sister stable, or possibly cure her, it is worth the risk of treatment. And she should never have to suffer from the treatment itself. If she is, she should contact her onc immediately and get different support agents and anti-nausea drugs etc... There are newer treatments and chemos coming out these days that are more targeted and meant to cause fewer side effects and less strain on the body. Your sister may be one of these lucky people who only mildly feels the effects of their treatment.

(((Tina))) I'm thinking of you, and sending you my love. I wish I could do or say something to ease this pain for you. But all I can do is say I understand and I share in your tears.

Now that you are here at, know that whatever comes your way whether it is good news, bad news, good times, tough times, life and loss, you will never go through it alone now. There are people around the world who understand everything you are going through, all you are feeling, and love you and pray for you every day. You've joined the biggest, most supportive and knowledgeable family imaginable. We are here for you.... always.

(((Jen))) There is nothing wrong with you. Sometimes our senses just become over loaded with this cancer crap. It is hard to put it into words. I do know what you mean about posting. I haven't posted very much at all in the past 2 months. But the thing is I am on this site at least 2-3 hours a day reading, and hitting the reply button just to cancel it. So I do understand. For me, it is a combination of wanting to be supportive, but not knowing how to put into words feelings of hope and faith when right now those feelings are so distant and troubling for me. I also never want to be the person who is always coming on here and complaining and venting. I want to be positive and to help. I just don't have that strength right now. For you, I'm sure you have a mixed sense of desires. You are so incredibly blessed to have had your prayers answered. You were given a gift for which you feel the strong desire to share that hope and that knowledge with others. That is a good thing, and admirable thing to do. But I'm sure there is a side of you that is still afraid, the human weak side of all of us that just wants to forget the C word, that it ever happened in our lives. We all want with our heart of hearts for things to be the way they used to be. We want to go through the days without fear of cancer progression and symptoms. We want to be carefree and happy go lucky again, completely ignorant of the devastating effects of LC. Jen, just know that we know you love us all, that we are always in your prayers regardless of whether you are posting it or not. We are so happy that LC has vacated your family (although we never know it will never fully leave your thoughts) and our sincere desire for you is that you LIVE life and are happy and carefree again. I think our hope for everyone here is that they can put LC behind them and truly live each day (even if it is only one day). I know that is what I pray for. I pray that everyone here hears news that they are cured or their loved one is cured, they go away from this site and LIVE life never to return, never to post again because they don't NEED to anymore. I want for no one to NEED this site. Wouldn't that be a dream come true? Anyway, you are always in my heart and in my prayers. We understand the silence and we know that a lack of words does not equal a lack of love. Love you girl!!!

Rochelle, So sorry that you received such devastating news. I agree with the others that you should look into cyberknife. With Keith, we were told that even though he had full dose radiation to his entire brain, if needed he could still do cyberknife. But, he would have had to go to a different hospital to do it because it was not a technology they offered. So, by the doctors saying there is nothing they can do; what they may be saying is that there is nothing "THEY" can do, but there may be something a different center can offer. Seek the second opinion. Plus, Keith had over a dozen brain mets and they were still going to consider him for cyberknife so please still look into it. You are in my prayers (((Rochelle)))

Hi Kim, Another point from a widow. I know things are different for men and women, and things are different from person to person. But I wanted to let you know that no two people grieve the same way and for the same length of time. What might seem like too soon to you and your grief may be ok for your step father. I also want to say some things from my point of view too. I have only been without my Keith for 3 short months. But they have been the longest most painful months of my life. But when I think about it, I actually started mourning the loss of Keith over 3 years ago when he was diagnosed. I cried endless hours over the fear and thought of life without him. So where some people may think I'm so ahead of things because I had to go back to work or I had to attend events without him, in actuality I've been mourning for so long already. Your step father probably had to start processing and dealing with your mom's loss from the day of her diagnosis as well. Now I am not personally ready to get into a relationship with someone else. I honestly can't believe it could happen for me again because I had the greatest love of all time. But, at the same time I'm hopeful that maybe some day it can happen. Granted, I'm younger than the average widow/widower, but the idea of spending the next 40-60 years without anyone to care for, to love me back, to talk to and share with is so very frightening to me. What kind of life is that? I wouldn't wish this loneliness that I feel on my worst enemy. And to think that your step father should endure this loneliness for the rest of his years is something you shouldn't wish for either. It is so very very hard and very painful. This woman, she will NEVER replace your mother. Not in your heart, and most likely not in your step fathers heart either. Love does not die, and it doesn't get swapped out. But maybe this woman can be someone different than that love, alongside that love. The heart is an amazing thing it is capable of infinite amounts of love. Take for example your love for your kids. You have the first child and you think you love them so much you will burst and could never love anyone or anything more. Then you have another, and you don't love the first one any less, but you love the second just as greatly. Your heart expands to hold ever more increasing amounts of love and more and more people to love. Love is the most honorable, noble and worthwile thing this world has to offer. It is the only true reason to accomplish great works, and strive to thrive, survive, and live. I live my life and do all that I do only for those people I love. If you love your step father, you will want him to have love in his life. I know it is very painful for you as the daughter to see this from your perspective because the only other woman you long to have in your family is your mom, and this woman can never be your mom. The only person you want to see next to your step father is your mother. But try and remember she is always there with him in his heart. This might not mean he is forgetting her; he is not moving on and away from her, he is taking her and all she taught him about love into the rest of his life. Your mom taught this man how to love, and what love is, and if he gets the opportunity in life to spread her love to others, it should be something you pray for. You know your mom, you know how loving she was and how much she wanted the best for all of you. Would she want you to suffer forever? Or would she want you to find ways to have joy in your lives while still holding her in your hearts? Would she want you to share all the gifts and lessons she taught you with others? Would she want you to be loved and cared for? None of this makes it any easier. None of this makes your heart stop aching and your tears stop flowing. But please don't let your anger and hatred for the situation that her loss has put upon your life be directed at your step father. He is doing the best he can to get through each day of his life without her too. She can never be replaced in his heart. That is one of life's biggest myths I think. Sorry for being preachy. I just believe so strongly in the power and importance of love.

CHOCOLATE!!! Any kind of chocolate is good, but my favorites are the Hershey's Caramel Treasures. mmmmmm....I think I'm going into severe chocolate craving mode now just thinking about them.

My sharona (The Knack)

Lucie is such an amazing woman, so strong and a true fighter. She is hanging in this fight and giving her body time to fight the lung problems. Stable is good, and it is giving her internal healing with each minute that passes. I am praying so hard for her, and for you Don. I am awed and inspired by your strength and your love. You are a wonderful caregiver and a wonderful husband. We love you both so much, and our hearts are heavy that you are going through all of this right now, but I have faith and I have hope that she will be improving soon, and will be our vibrant Lucie again soon. (((Don & Lucie))))

I know a stroke at 41 is unlikely, but it can't be ruled out either. Blood clots are a very common side effect of many chemos and cancer treatments. A blood clot that dislodges and travels to the brain can cause stroke. It could be brain mets causing the symptoms, and if so, I would get look into the Gamma knife procedure. They have really come a long way with that technology and it is having some excellent results without damaging surrounding brain tissue. I will be praying for your mom.

(((Tina))) Happy Birthday Charlie! Tina it sounds like you have a wonderful day planned. I didn't know this, but Charlie and Keith shared the same birthday. It is Keith's 35th today too. I'm meeting some of Keith's friends at the cemetary to take him flowers and then we are all going to his favorite pizza place to just celebrate him. I know how hard this day is for you Tina. I pray that the positive things you are doing for Charlie and for you make this day a blessing and bring joy to your heart today and always. Love you!

On this day, 1971 Keith Alan Kubesch was born to this world. Today he would have been 35 years old. I just wanted to take this opportunity to tell you all a little more about him and celebrate the beautiful life he led. From stories I was told, keith was always a determined and willful young boy. He knew what he wanted to do and would not be detered. Sometimes he was overly energetic and creative (in other words naughty). In fact from stories I've heard it was a common joke that he was a devil of a boy as a child. I believe it, because he had a devilish and childlike joy for life. Keith always new how to have fun. He laughed so often that I can barely remember a handful of days that weren't filled with laughter. He was practical joker, and had a hysterical and dry sense of humor. He used to love to tell people long and detailed stories that were simply unbelievable and outrageous, but he would be so passionate and serious and so detailed and graphic that you couldn't help but believe it was true. He would go on for as long as he could until someone would break in and let the poor listener off the hook by saying it was all a joke. But it was never done to make anyone feel stupid or at anyone elses expense. He just was so silly that everyone would just laugh at the absurdity of it all. He was very much like a big kid at heart. He loved toys, he loved simple pleasures. I remember he saw an ad for a remote controlled helicopter and he turned to me and asked "can I Can I can I, please please please" just like a kid would do. The look of joy and excitment in his eyes was so infectious. He was like that with so many things. He loved Halloween, just getting dressed up acting silly and childlike, candy, friends, halloween parties. He also had a funny cheesey side which was why he loved the T.V. show Magnum P.I. and he love Tom Jones. Even though he couldn't sing a note, he would belt out a Tom Jones song for all to suffer and enjoy. His greatest passion was music. He was such a talented drummer. He was self taught, and played in bands in high school, and various ones throughout life including for our church. He wrote songs for most of his bands. Most were serious musical pieces, including a love song he wrote for me, and some were just an expression of his weird sense of humor (he also liked Weird Al Yankovich and Frank Zappa so he loved paradies and silly songs). When he played the drums, his face would transform to something angelic. He would become lost in the music and you could see he felt it in every cell. Again, it was the look of pure joy and happiness. Sometimes, he would look at me with that look for no reason. It was alway so obvious to me that he loved me more than anything in this whole world. He wanted so much to have a child with me. To share this incredible love, to have a baby that was the blending of himself and me, a child who he could teach to love music, a child that he would share his joy of life and gratitude for each small blessing with. Keith was also very romantic. He used to write me notes and letters for the smallest of reasons. He always recognized small favors and would respond from his heart. He once wrote me a letter because I decorated the house for Christmas, and he wanted to let me know that he not only thought the house was beautiful, but that I was beautiful to him and that he thought I made every day special. He appreciated all I did for us, every day and he loved me. He would bring me flowers for no reason. Usually because he was a morning person and I wasn't. He'd wake up hours before me, and while waiting for me to wake up and join him for the day he would become overwhelmed with anticipation and love for me and would run out and get me flowers to put on the bedside so that when I woke the first thing I would see was something beautiful. Seeing something beautiful was a way of life for me. Every morning we were together, Keith would wake me up by kissing my face before he had to go to work because he couldn't go through a day without kisses and without wishing me a good day and saying I love you. So every day I woke up to his beauty both physical and his beautiful soul. I miss you so much Keith. I love you with all my heart and soul, Then, Now, and Forever... Always! I am grateful for the opportunity to love you, to be loved by you to learn from you. You filled my every day with unimaginable happiness and grace and made me a better person. May God hold you gently and lovingly in his arms as I so wish I could do today. I love you!!! Happy Birthday my Keith.

Don, I am so very sorry to hear this news. I am praying, praying, and praying for Lucie. She is such a strong amazing lady. If anyone can pull out of something like this it is her. I am sending you both all my love and my prayers. Carleen

Its been raining here for days, and it is about 60-63 degrees. There are a few trees starting to turn, but most are still pretty green. I give it 2-3 weeks and we will be in full color. Wisconsin is really actually pretty in fall. Fall was always Keith and my favorite time of year.

Prayers continuing for Charlie.

sending many fervent prayers for Charlie.

I like the smells of freshly baked bread and apple pie. But I really love the smell of freshly cut grass. Whenever Keith would mow the lawn, he'd come in, and he'd just smell like fresh cut grass and sunshine. Now when my lawn gets mowed I go outside and breathe deep and imagine I am smelling that scent on him again like he was standing in front of me.

Nancy I just wanted to send you my love, and hugs ((((NANCY))) I am saying prayers for healing and for relief from this sh"ty feeling really soon.

I am so very sorry to hear about your mom. I know how difficult and scary this must be for you and for her. It is especially so in the beginning before the fight begins and as you face the unknown. I just wanted to let you know that Cisplatin and Etoposide was my husband's second line of chemo. It is a rough chemo, I won't lie about that. But the Emend is a wonderful anti-nausea drug. He never once threw up while on it. He found that it was best to take the Emend first thing as he got out of bed, even if he wasn't nauseous yet, it was better to take anti-nausea med on schedule to keep nausea from happening instead of trying to use it after the fact. For him, the effects of the chemo with the Emend left him with fatigue, general icky feelings, achiness. He said it was a lot like a hangover. But nothing he couldn't live with. He was still able to pretty much participate in everything like normal. Just the day after chemo he needed to take it easy and rest a lot. It is also very important that your mom drink lots of fluids during treatment. Chemo has a tendency to promote dehydration and sometimes the side effects of the dehydration can be worse than the chemo side effects. So lots of water, gatoraide, juice, whatever she will take. As far as food, she will want to keep her strength up, and chemo will definitely make her not want to eat as much. Many people here have found that doing a small meal/snack every couple of hours works better than 3 regular meals. That way there is always a little something in her stomach to help stave off the nausea and get her calories in. Also suggest boost or ensure as a nutrient suppliment. I am so sorry your family is going through this, but I am glad you found us here. This is a wonderful group full of great advice, knowledge, support and love. I wish your mom the best of luck with her treatment, and I will keep you both in my prayers. Carleen

I don't know too much about squamous cell NSCLC, but I did find this phase II trial that looks like your father would qualify for. http://www.clinicaltrials.gov/ct/show/NCT00365183?order=14

Kathleen I am so very sorry for your loss. I am sure there is a paradise and your dear mother is there now enjoying pleasures and treasures unknown. She will always be close to you, watching over you.