curlysue50

Just finished my swim. I had the whole excercise pool to myself today. Except for the nice young lifeguard, of course. It was so quiet and peaceful. Now to decide to do with the rest of my day. I am enjoying being out and about. The trees are turning such beautiful colors. They last such a short time that I am trying to enjoy every moment. I even noticed all the golden maple leaves on my front lawn. We live in the country so we don't do a lot of raking. Just in the areas they accummulate around the porch and house etc. 51* and the are talking about 32* overnight, so hopefully that will start to freeze off those weeds that have been challenging my allergies. My daughter posted her wedding photos this morning. They are on the photographer's website and won't be available for me to share yet, but I will when I can. The wedding day goes by so fast and there are so many beautiful moments that I am glad she had a great person to capture the moments. They were edited down to 1083 photos from 4000. Aison said she and her new husband watched them as a slideshow for 1 1/2 hours last night, but her husband told her they would not be able to do that EVERY night. Oh, to be a newlywed again! My husband and I just had our 15 year wedding anniversary on September 27th. I reminded him a couple of days ahead, just in case he had forgotten (he had). That way he had time to get me a card and flowers. No use setting yourself for disappointment. You get to know a person over the years and what to expect from them. I knew if he was reminded of the date that I would get a little remembrance. That way he did not have to feel bad for forgetting either. A win for everyone. Well, hope you are all enjoying your day. Give Autumn Rose a little kiss for me, Diane! Susan Sent from my SCH-I405 using Tapatalk 2

Patty: So happy to hear your GREAT news. With stage 4 lung cancer that type of news is especially welcome. I am also stage 4 and on a treatment that is working for me. It sounds like you have a great family and I am sure they are celebrating this news with you. Thanks for letting us know and being an inspiration for all of us. My first line of treatment did not work, but my second one did. There is reason to have hope and keep living our lives! Good for YOU! Keep us updated on how you are doing. Our Just for Fun forum is a great way to get to know people on this site. We just check in and share our day to day lives, (new puppies, new grandchildren, what we baked or family events, etc). Getting to know the people, not just their cancer:-). Stop by someday! (((Hugs!))) Susan Sent from my SCH-I405 using Tapatalk 2

I would agree with what the others have said here about getting a second opinion and being sure the oncologist is a lung cancer specialist. I do not have squamous cell cancer, but NSCLC adenocarcinoma, stage 4. I was told my care would be considered palliative rather than curative. I had infusion chemotherapy and am now on a genetically targeted oral therapy. My left lung had collapsed and I had metastases to many areas of my body. The drug has reduced or removed many of those tumors. My left lung is open and functioning again except for a small area of scar tissue and pleural effusion in lower lobe. My cancer is not gone, but I am living a very good quality of life. As others have said palliative care today often goes on for years. It means they can not cure you. It does not have to mean "end of life" care as it used to. I was diagnosed August 2011 with extensive spread stage 4. I am still here undergoing palliative care. I am sorry for your reason to be here, but hope we can provide support for you. Cancer is hard, as you already know. You don't have to face it alone. Best wishes in getting some more definitive medical answers and a possible course of treatment. Hugs Susan Sent from my SCH-I405 using Tapatalk 2

Eric, I forget that you are at the end of your day when we are just rubbing the sleep out of our eyes. I suppose by now you have been to yoga class, posted a few hundred letters, had lunch and a brew at a pub, walked in a 5K event for a lung cancer charity, and done some outdoor bowling. Whew! You must be exhausted! You do keep really busy and it is so wonderful that you have such a zest for life. The ironic fact is that having cancer has given you the opportunity to have the time and incentive to do all these activities. Your enthusiasim for life brings such attention to the cause of lung cancer advocacy. And I for one appreciate it. I am sure many others do too! Even those crazy woman at the Bay City Rollers event that shared some kisses with you could not resist your charms! I can't leave today without mentioning how much love and support I am sending out to our good friend Janet. I was up a couple hours last night, and could not get her out of my head. I wish I could do something more. All I can do is send love and hugs. Be here if she needs me. I hope today brings her a fresh perspective and the big armload of HOPE I am sending her way! And on a lighter note Bailey is already been up for 3 hours and is taking his puppy nap on top of his rope toy! Sent from my SCH-I405 using Tapatalk 2

I forgot to remind you that Hope is not always bright and flashy and obvious, sometimes it is just a tiny little web address that can bring you to others like your self. We can share our Hope with you while yours seems out of reach! Susan Sent from my SCH-I405 using Tapatalk 2

Janet: I have been so worried for you. When you started on chemo and then you disappeared I knew where you went. I too had extreme reactions to chemo. All I could do was stare at the TV or sleep. I could not read. I could not focus long enough to watch any of the DVD'S my sister brought me. I could not face trying to figure out Netflix at my parents house where I was staying during treatment. I could barely walk 3 houses down to my sister's house and had to hang onto the rails to pull myself up 2 steps. Eventually I could not climb stairs at all. I threw away most of the food they kept bringing me because I could not keep it down. After round 2 I could not get out of bed by myself and I was up every 10 minutes all night long. Someone had to help me. I felt as though I was dying. After round 4 I went in to meet with my oncologist to find out my results. I remember being terrified. If we had shrinkage I would have 2 more rounds of the carboplatin/taxol cocktail that had made me a non-functioning human being. If I was still just stable I would have the choice of stopping that treatment. I remember wondering if I would have the strength to let them pump me full of chemicals again or if I would crawl screaming out of the room. I only had stability. I remember feeling such relief and such guilt for feeling that relief. It takes great strength to do what is the right thing for YOU. My oncologist gave me the choice. He felt since my side effects had been so extreme that it was okay for me to stop. I made it through the holidays. Barely. By New Years Eve I was back in the hospital for 5 days. It was at that point we decided to try the genetically targeted therapy I am on now. It was not available when I started chemo. You know me and know my treatment is working now. I have survived over one year since diagnosis. I still worry what will happen some day when my current treatment does not work. I don't know if I could go through any more chemo. I do not look forward to making that choice. My oncologist told me that the chemo cocktail I had would be the worst I would ever have (this was after round 3). But, I am not sure I would still be able to try it again. I know others who say their side effects were not so bad. I don't know if I am weak, or if they are better liars than me. I understand your desire to really be ALIVE. I have been where you have been. I know some day I will be faced with a similar choice. Do what you need to do for YOU! You have been through a lot, you have shared and given of yourself to your family, friends and fellow lung cancer survivors. I have tears running down my face as I write this and wish I could be there to hug you. Stage 4 cancer is more than anyone should have to bear. But we do it. You do it, and I am just new at doing it. It is hard, it sucks and I hate it. But it is also making me stronger, more compassionate and has given me forever friends like you. You are a wonderful person and you should be the person you want to be. It is not giving up. It is acceptance. There are some things that just beyond our control. I miss you here on LCSC. You have such a good perspective on life and you are the best Words with Friends player I know. Even during these last 3 months. So, I know you are still in there my friend. Talk to your oncologist and then do what is right for you. I want to hear from you. If you are down, it is okay to ask for help. I know what it is like to isolate, but please let us be there for you, as you have been for many others. I know I have said a lot, probably too much, but your post touched my heart and all this came pouring out. If you need a hug let me know and I will fly out to give you one. Love and many virtual hugs, Susan Sent from my SCH-I405 using Tapatalk 2

Jane, it is actually Diane that is expecting the new grandbaby. If you would like to contact my most recently married daughter, Alison, and let her know I WOULD really love another grandchild, that would be wonderful. Your puppy is ADORABLE. It will be a couple of months before my puppy Bailey gets his little boy bits snipped, so until then I will endure the chewing and fighting little warrior, (just kidding). Have a great family get together. Susan Sent from my SCH-I405 using Tapatalk 2

Very exciting news on the new grandchild being born tomorrow!. I had 2 c-sections, first one emergency. The second one scheduled. It takes some time to prep you for surgery and they are usually trying to use the operating rooms as efficiently as possible. I went in for an early surgery and then an emergency one came in. So, I got to wait! You never know what will happen when it comes to babies. Hopefully all goes well! Maybe if Bruce is up early, he will stop by to watch your grandsons. I will let you know how the doughnuts turn out. I was sick a little bit ago and this has been going on for awhile. My PCP says it must be my chemo meds because all my blood tests come back normal. My oncologist says no because first 4 months on chemo med I did not get sick at all. The vomiting started 2 weeks after I started on a new oral diabetes med. One of the physician's assistants told me this is one of the harsher on the stomach. It has been getting progressively worse, so I made a call and left message for my PCP'S nurse. I need something else. Or at least a break from this one to see if that is the cause. It is so easy for them to say it must be the chemo med. I am sure they have no experience with this drug because it is so new to market. Hope they figure it out soon. I do not enjoy getting sick. Plus, I have lost my interest in making doughnuts for now. Susan Sent from my SCH-I405 using Tapatalk 2

It is a beautiful, sunny fall morning here in Michigan. After a busy weekend it is very quiet here in my house. Bailey is taking his morning puppy nap and the only sounds are the soft hiss of my air cleaner and the ticking of the antique school house clock that my husband rescued and restored. Bailey has his next set of puppy shots this afternoon, so I will have to delay my swim until after that. I usually go swim at noon after the Physical Therapy group from the hospital finishes their morning use of the pool. I got it in my head to try and make some doughnuts this weekend. We have gone a few times to the local cider mill and they have freshly made, warm doughnuts rolled in cinnamon sugar. We had to go 5 places to locate a cutter, but finally found the last one they had in stock at Williams & Sonoma. I got ingrediants for sour cream, apple cider, and buttermilk flavors. If I keep my energy level up I may try to make one recipe this afternoon. Hope you all have nice things planned for today! Susan Sent from my SCH-I405 using Tapatalk 2

I did this, and it did not give me any trouble, but I know how the internet can be fussy sometimes. Interesting to take. Sent from my SCH-I405 using Tapatalk 2

Wow, we are all dating ourselves here! I remember the Bay City Rollers. Since Bay City Michigan was in the area I grew up, (the thumb area of the mitten) it seemed funny to us a Scottish band would have that name! Ulta is definately a nice store for beauty products! There is one in Ann Arbor, Michigan where my family lives and my treatment center is located. It is 69* and sunny here, a beautiful fall day! Lots of people out and about. I just went shopping a bit for clothes while my hubby went to a home improvement center. Nice for both of us! I finished before he did, so I got out my phone and stopped by here. Glad I did! Have a great day everyone. Susan Sent from my SCH-I405 using Tapatalk 2

Denise, welcome to LCSC. Congrats on quitting smoking and for keeping cancer at bay. Please keep us updated on you and I look forward to getting to know you. This is a great place for support, for friendship and for information on how those of us who have been affected by cancer cope and live our lives. There are many great people here. Sorry for the reason you have to be here, but glad you found us here. Susan Sent from my SCH-I405 using Tapatalk 2

Thanks, Diane. It is one of those things I am not obsessing over, but it sits in a corner of my mind and I pull it out once in awhile. Mull it over. No one has told me that I need to try and have profound obsservations about my life, but I do try to understand and respect my feelings about having cancer. It is not always fun, but when I get some understanding or insight about myself, it does bring some relief and peace to my heart. Thanks for sharing your observations and wisdom. It touches my heart. Sent from my SCH-I405 using thanks DianeTapatalk 2

We have had upper 30's at night, but I have a nice, cozy heated mattress pad! Just like sleeping on a queen-sized heating pad! My hot cocoa in the morning seems appropriate now. I started it instead of coffee because the caffeine in coffee seemed to bother me. I drank it all summer even though it seemed a little out of place I did not want to give it up. I put just a touch of Giaradelli cocoa powder, not the 4T. It calls for. Christmas wil be here before we know it. There, I said it! HaHa! Sent from my SCH-I405 using Tapatalk 2

Thank you for stating that, Katie. I was beginning to wonder if this advice was coming from a medical professional. It is important that those coming to LCSC go to their own medical professional or to the link you provided for medical advice. I am sure anyone's oncologist would not be happy to have their medical advice to their patient questioned by a lay person. Lung Cancer of any type is a serious medical condition and needs to be treated by professionals. Susan

Diane: I think we have your 70* weather here in Michigan. It is sunny and about 69* out this afternoon. It is absolutely beautiful! I love this fall weather. 95* is much too hot for me. I hope you have some air conditioning. I was watching on the news about the wildfires out there and how much it is affecting air quality. Staying inside is okay for a bit, but you do have to go out once in awhile. Sounds like it was a good time to do a picture book. My oldest daughter did that once for my grandson when he was younger. I put it up because he was still at the page ripping stage (about 3) when she did it. I should get it out again. He is 5 now and loves to look at the family pictures. I laughed to myself when I read that you thought I was getting a lot done. Then I realized I AM getting a lot done. But, I do pick one small thing at a time. Clear a counter top, sort a junk drawer. I don't want to give the impression I am SUPER WOMAN, well maybe. Super Woman who takes on one task at a time and is filling up some of the empty holes I had in my life when I was first diagnosed and had to leave my job. My life is pretty full now. And not just of stuff I have to do, but things I want to do. That is pretty cool. Well, I hope everyone is having a great day, and Diane, I will breathe in some of the crisp, fresh air coming in my open windows, just for you. Hope your AIR clears soon! Susan

I posted this in the Just for Fun forum yesterday, but it got my thinking. Katie posted this in response: I have spent some time in the last year, living life frantically as if it were going to end tomorrow. And then I have spent other time totally paralyzed because I was not sure anything I did would be meaningful. Or if it would even matter. And now I am getting some forward movement. Cleaning out closets without giving away everything. Getting a pool membership and committing to going 2-3 times a week. Getting and staying involved with LCSC to be there to support others with lung cancer or loved ones with lung cancer who are trying to figure out what their lives will be like. I can never be "Susan without cancer" again. I am learning to be "Susan with cancer". Where cancer is not the only thing that defines me. I was wondering how others, especially those with late stage cancer have dealt with this issue. Not living your life in denial, but not living at a frantic pace so that you miss some of the sloooooow stuff that makes life so enjoyable. Thoughts on this? Susan

Welcome Patty: I have not used Tarceva, but have heard of others having much success with it. If your oncologist is suggesting it, there must be a reason. You don't know until you try. Talk to your oncologist about the pros and cons of each treatment and ask for his or her opinion. Then make your choice. I try to educate myself as much as possible and they tease me at the treatment center I go to, about how many questions I ask and that I always ask to see a copy of my scan reports. I have learned a lot I did not know about my body since I have had lung cancer. I am also stage 4 adenocarcinoma and have the ALK translocation, which made me a perfect candidate for the genetically targeted therapy, crizotinib (Xalkori). My first line treatment was infusion carboplatin/taxol which gave me extreme side effects and did not shrink my tumors so we only did 4 rounds. At that point, they did the genetic testing and found I had the ALK translocation. My oncologist called me at home and said,"Mrs. Gamble, I have some good news for you, you have the ALK gene mutation and Xalkori is just released outside of clinical trials for use." It was the first good news I had had in awhile. The drug was not available when I first started treatment in August 2011. We decided to wait 90 days after I finished infusion chemo. Even though I had no shrinkage of tumors, they had become stable and you keep your treatment options open for as long as you can. Less than 30 days after my last chemo, I started to get very sick again. In fact, I never really felt better, but got even worse. In January 2012 they started me on the Xalkori. Within 2 weeks my daily vomiting stopped. I started to gain strength. I could drive a car again! Yay! It took a little time, but my left lung which had been totally collapsed by tumor started to fill with air. My adrenal tumor disappeared, the nodes in my right lung disappeared, my liver tumors stabilized and my bones, which were affected by the cancer, had started to try to fill in and heal. My out of control diabetes and blood pressure, were now able to be controlled. Except for some nerve pain, once in awhile from damage to my spine, and a some discomfort in ribs if I lift something too heavy, (perfect excuse to ask my husband for help), I am doing really well. August 9, 2011 was my diagnosis. I am now a one year survivor. My daughter's wedding was Sept. 1st this year. Last holiday season before the Xalkori treatment, I was not sure if I would be able to be here to attend her wedding. It was in Columbus, OH and was BEAUTIFUL. My life is different than before, but I appreciate every single day. They tell me they can not cure me, my metastases are extensive, but the twice a day capsules I take today, have chased away the cancer for now. My oncologist is so pleased, and was amazed how well I responded to the treatment. I was only his second patient to use the drug. I hope you will make the right choice for your treatment. Please keep us updated on your progress. This group here has become like family to me. They cheer me on when I get discouraged and revel in my triumphs. Like you, I was not a smoker and did not expect to get lung cancer. But, I do have it and it has changed me. It has made me more compassionate. It has made me appreciate my life more. It has gotten the best out of me. And I mean that in a positive way. It seems like in my life, that every thing happens for a reason. Sometimes that is hard to find, but if I believe that, it makes it possible to keep going forward. My thoughts will be with you, and let us know how you are doing. I have found there is no thought or question too small to be asked on this site. We have been there, and understand. Hugs, Susan

Made caramel apples and caramel corn this afternoon. My dogs were hanging under my feet and picked up any stray kernels that got away from me as I was stirring it on the cookie sheets. I think I will need some rest tomorrow, or else a really good night's sleep tonight. Some days it seems like I get so much done and others it seems like I can't get moving at all. Not so different than my old life. I feel kind of "normal" sometimes. But, I am sort of afraid to let myself feel that way. Does that make any sense?

Welcome to LCSC and I hope you can find the support you need here. There are many lung cancer caregivers and survivors that are very generous sharing their experiences with this disease. It really helps to know you are not alone and share with others who understand how you feel. I am also stage 4 NSCLC adenocarcinoma. My mets were to ribs, spine, legs, liver, adrenal gland and brain. I am just over one year survivor. When you find a treatment that works it does get you to a place where you want to preserve your health as much as possible. It is good you are to that point. Eating and excercise are a great place to start. I recently started some mild excercise. I have a lot of bone damage, but I looked for something I CAN do rather than be discouraged about what I could NOT do. The pool seems to be a good choice for me. I have found here that no question or feeling is silly. Sometimes just asking clears it out of my head and I find someone else may be dealing with the same issue. This is a safe place to work out some of the issues that only someone who has been touched by cancer can understand. I am sorry your husband is dealing with lung cancer, but glad you have found us here. Come back often and let us know how things are going! Welcome. Susan Sent from my SCH-I405 using Tapatalk 2

Eric: It seems you have a lot going on in your life and mine in comparison seems pretty simple. I admit that is probabaly because the simple things are what I CAN accomplish right now and make me the happiest. I have been sorting through things in my house and finding new homes for things I no longer love and cleaning and finding a new spot in my home for the things I still love. It is almost like a treasure hunt. I found a couple of bowls I thought were antiques only for display that are actually modern serving bowls. Bonus! We visited an orchard last weekend and last night I put a roast beef and mushrooms in the crockpot and baked potatoes and winter squash in the oven. I even made homemade gravy with the juices of the beef and mushrooms. My husband was impressed I made the gravy and did not use the stuff out of the jar! I had also made an apple cake which my husband took several pieces to work to share. I packed more pieces than people that work their, but I guess it was a hit because it was gone by the time my husband went back to the break room for lunch. I did the Warm Water Workout at the pool yesterday and thought I might be sore today, but so far so good. Everyone was friendly and I did what I could and got a nice workout. I couldn't touch my elbows to my knees, but I got as close as I could. Well, guess I had better find my project for today. I have been washing my long sleeve shirts and pulling out the long pants for winter. Now I have to rearrange the closet to make room for them! And start putting away the shorts.It can get pretty cold here in the winter in Michigan. It will be here before I know it. Hope you all I have a great day! Susan Sent from my SCH-I405 using Tapatalk 2

Hello Andrea: Welcome back. So sorry to hear of your mother's passing. I am a stage IV, one year survivor. I appreciate ALL the support I have received here and am grateful for everyone who comes here for support. Some post and some read looking for answers or just the comfort that they are not alone. There is so much here. I think the mobile app is great and does make it easier to keep in touch on the go. I am one of those who checks my phone even when I am out, so I love this new app. I have a 5 year old grandson who is lots of fun, full of energy, but I can send him home to his mom when I run out of energy. You must have your hands full with 5 year old TWINS! How is your dad doing? Hopefully he is well. Nice to meet you and look forward to learning more about you. You are in the right place, and it is good to have you back. Sent from my SCH-I405 using Tapatalk 2

Eric, Bellevue is population 1401, so it is pretty tiny. A one stop light town. You would need a pretty detailed map to find it. Maybe a microscope would work better than reading glasses! It is made up of churches, restaraunts, bars, or as you would say, "pubs", a grocery store and a "Dollar store". It is one of those places that the main road travelled through until a freeway was built. The interstate highway system surely changed the small towns in our great country. Some towns adapted and some sort of died out. Bellevue's name means beautiful view and there was a native American site on the river here through town. There is an old restored mill on a dam on the river. One of my friend's husbands grew up near the river and has a large collection of arrowheads made by native Americans. He found them on the river bank in his backyard. The house I live in was built originally in the mid 1860's and added onto three times. You can see the hand hewn beams in the basement. Now I know in the UK there are homes and structures that go back much further than that, but that is all relative I guess. We are a much younger country. Judy MI probably lives about 1 1/2 hours from me. I have not met her. She seems to be enjoying good health and I can't say I blame her for spending time enjoying her life again, so I have not been in touch with her for a bit. Susan Sent from my SCH-I405 using Tapatalk 2

Bruce: Congrats on 5 years. When I first read the survival rates for lung cancer patients, 5 years seemed pretty unusual. You give me hope! Here's to many more years to you cancer free! Susan Sent from my SCH-I405 using Tapatalk 2

Eric: I live in Michigan. It is the mitten state that is surrounded by the Great Lakes. (Lake Michigan, Lake Huron, lake Superior,and Lake Erie. I live in the lower pennisula in a little town called Bellevue. It is in the lower middle of the state between Battle Creek and Lansing (which is the capitol of the state). We are not quite an island like Scotland, but we have water on 3 sides. I have a heritage that links me to the UK. My dad is Irish and both of his grandparents were immigrants from Ireland. Ireland looks like a beautiful place from the pictures I have seen. Have you been there? I had hoped to make a trip there in my lifetime, but not sure if that will happen. I did get in touch with my Irish roots today by coloring my hair. It grew back in Salt & Pepper after my chemotherapy and I was feeling too young to look that old. I could not remember the name of the color I used to use, so I picked "caramel". It turned out more like "carrot cake", but on the upside, it is not grey anymore. Sent from my SCH-I405 using Tapatalk 2