curlysue50

Thank you, Katie! At least I am aware what I am doing and can put on the brakes of my behavior or at least try to redirect my attention. I went out for a walk up our country road tonight and had a nice visit with my sister-in-law. I know what you are talking about with cleaning. Just when I think I have all the counters cleared and all the little piles of "stuff" put away more "stuff" seems to appear. Sometimes I just don't know where it all comes from. I am quite a collector ( no, not a hoarder!) and I only save the really good stuff! Susan

I am not sure why I waited so long to post in here today. I have been in several times since this morning. I did go for my walk today.( another one mile event), but I also spent a good part of the day getting ahead of myself. I go again for scans in August. At 2 months instead of 3 for something that may or may not be progression in my liver. Everwhere else is improving or stable. Just won't know about liver until we get a fresh new full set of CT scans. So of course I have to figure out what will happen next IF there is progression. My oncologist said it would be chemo/Alimta. So then I read an article on EGFR acquired resistance on Cancergrace site, then asked question on site about ALK research studies...blah, blah blah .....Can you see what I was doing here?I was all worried because Pfizer has deferred a request to do a trial and this could benefit me. BUT I DON'T EVEN KNOW IF I HAVE PROGRESSION YET! I am always looking for answers and sometimes when they don't even apply yet. I guess I lost focus on today and gave away my peaceful mind. My mind travels at the speed of light sometimes. And light can be a hard thing to get ahold of. Thanks for listening. Lily, where did you live in Louisiana? I lived ther for just over a year in the mid 80's. Slidell was the town and I worked downtown in One Shell Square building. It was the tallest building in the city when I was there, but there was a taller one being built. I really thought of all the nice people I knew down there as Hurricane Katrina blew through. It was such a cool city, I hope eventually it can recover fully. I know what you are talking about with the humidity and heat. You could get 4 inches of rain in an hour and it could be 85 degrees at 10pm. And then the Pearl River would flood. Some houses had sand bags around their homes all year round. Funny how much I can remember. And then I don't know if I locked my front door yet tonight. Take care y'all! Susan

I think I am going to take a cue from Janet and do something RELAXING this afternoon. It is supposed to get close to 100 degrees here today and the beach is 1 1/2 hours away, not down the road like at Janet's. So, I think I will find my Kindle and enjoy the air conditioning at least in the hottest part of the day. I got drawn into some political discussions on Facebook with one of my daughters and her friends. Election years...it is only June! Better take a deep breath and walk away to the safety of LCSC. NO POLITICS HERE! YAY! I made tiramisu this morning for the first time. I did leave out the rum though. I have enough "digestive" issues already and things have been pretty. Don't want to mess with that. Plan to try and walk again tomorrow. Will get up and go while the temperature is still cool. Supposed to go down to 67 overnight. Hope everyone else is enjoying there day and that Janet will run her toes in the sand for me! Susan

With my memory the way it is right now, I had to think really hard to remember if I had actually seen the shallow dug up hole, or if it was something from my imagination. That part is pretty funny. I don't forget a lot, but it looked so back to normal that I had to poke at it gently at one end with a stick and could see it had been hollowed out, jus to be sure (there are no babies in it). I have seen rabbit's nest right in the middle of a lawn before. I loved rabbits so much when I was a little girl that I sewed some up out of fabric, drew spots on them with markers and put them under apple crates in our barn on the farm. I took my grandmother out to see my "bunnies". She was not sure at first if they were real or not. I was about 9 years old. That summer on my birthday my parents surprised me with a wiggly box and when I opened the lid there were two brown and cream bunnies inside. Best birthday I can remember from my childhood! Susan

When I was 22 I could run a 6 minute mile, when I was 35 I walked 4 miles in an hour at least once and sometimes twice a day, 5-6 days a week. At 51, in April 2011 I had worked my way up to 2 miles 3-4 days a week, but it was a struggle. August 2011 diagnosed stage IV Lung Cancer and started chemo. September 2011, I could not walk the 3 houses down from my parents house, where I was staying during treatment, to my sister's house. She would drive down to pick me up. Today I walked a mile, in less than 25 minutes. I feel so grateful to be able to do so. Right now my treatment is working. I know there are others who are fighting for strength. I know how tough that is to do. I have been given strength not only from my treatment, but from all the others that I met at Hope Summit and on the LCSC site. I could not have walked that mile alone and am very grateful to each of you that I did not have to. Thank You! I had posted this on Facebook, but since I don't know you all there I thought that I would share it here too. It is beautiful and 80 degrees here in Michigan. It is funny what you said about rabbits, Janet. I had seen a rabbit in my flower bed and then noticed a large hole scooped out in the dirt. I thought that was odd especially when the next day it was filled in with soft grasses and completely covered back up. I have not seen any baby bunnies or activity, but maybe I scared it off with my looking around. Hope you all have a great day!

It is a beautiful, sunny day here in Michigan. Not so hot, just perfect. My 5 year old grandson came to have a sleepover last night with "Grandma and Papa". I think we fell asleep before he did and when I got up in the night to visit the bathroom I walked over his train set tracks that ran from inside our bedroom out to the living room. By that time he was fast asleep in his bedrom next to ours. We spent the morning eating breakfast, snacks, movies, more train set fun, until my daughter picked him up about noon. We had great fun. Now for some time to relax! Hope everyone else is enjoying their day. I have to make a trip to the grocery store for milk. That will be my big outing for the day. Susan

I am a stage IV Lung cancer survivor. I was diagnosed Aug. 2011. It had spread to my liver, brain, adrenal gland, and bones. I did IV chemo first and am now on an oral chemotherapy. my spread has been stabilized in some areas and actually disappeared in some areas. My doctor explained it this way to me: my cancer has spread into so many areas through my bloodstream that they can't cure me, but only try to push back or stabilize the cancer as long as possible to give me some quality time with my remaining life. The therapy I am on has given me great results. Your mother's medical team is probably the best to discuss the details because each person is different. If your parents don't want to discuss the details, I would advise you to respect that. To love your mom, give her all the time and support you can. Enjoy every moment you can. My doctor did not give me a time frame for my life because he said I am not a statistic, but an individual person. Cancer is scary because there are so many unknowns. So much you can not control. But, you can give love and time to your mom. Ask her what she needs and give what you can. Ask her what will make her happy and as I said earlier, enjoy every single moment. No one ever knows how much time they have. If you are scared, this is a great place for support. There are many folks here who have survived with cancer for many years. I can only tell you my experience. Keep your hope alive. Try not to let fear rob you of the joy you experience right now with your mom. My thoughts and prayers will be with you, your mom and family. Susan

Thanks, Randy! I do most of my posts on my phone and my clumsy fingers often hit the"save" button instead of submit. And I don't notice until I see 2 posts. Susan

I am not sure if anyone posts the "Air" on the weekend, but my husband has decided it is not "safe" for me to be outside while he is mowing the lawn. Something about me breathing dusty air into my lungs and lung cancer! So here I sit, inside our cottage, on a beautiful, warm sunny day. It was the first time I had been here in awhile and I was enjoying being outside and messing with my plants, ornamental grasses and putting out some yard ornaments. I tried putting up a fuss, but since the grass did need mowing I made, or more accurately, stormed into the cottage and got onto the LCSC site. I do have to admit the air conditioning feels good, my ice tea is ice cold and I can go out later when he finishes mowing! Hope everyone is having a great weekend! I was even able to enjoy some time in the cooler evening air in the hot tub last night! First time of the summer. We have a Realtor coming tomorrow to find out what the place is worth and what our options are for selling or renting out as a vacation rental. No decisions tomorrow, just a starting point. Meanwhile I think my lawnmowing husband might be nearly done. He just popped in his head to see what I was doing (and probably to see if I had "cooled off")! Susan

Diane: That is great news in many ways! Great for your friend and great to know that is is important to keep hope and listen to treatment suggestions. Everyone is different and you never know which treatment might be the one that will work for you. Never give up HOPE! Thanks for sharing. Susan

Donna, So sorry to hear the diagnosis for your husband. Stay strong you will both be in my thoughts. I was diagnosed last August with adenocarcinoma stage IV, and I am actually doing quite well today. When you find a treatment that works, it can really make a difference. Best wishes for the appt on the 25th. Susan

I think when you have a stage IV lung cancer diagnosis you feel the pressure to make decisions fast because you feel your time is limited. It is very easy to get caught up in the emotional urgency that comes with wanting to grab every bit of life you have left. To think fast and furious and make decisions very quickly without really taking the time to evaluate and consider. When I realized no one really knows how much time they have in life and that I can still make thoughtful decisions without rushing, it was a real relief to me. I still want to enjoy all the moments in my life, but rushing to fast forward my life will not make me any happier.

Katie: Thanks for the advice! It helped me make some decisions. I was feeling pulled in so many directions and wanting to make everyone else happy and thought that would make me happy. I was putting the pressure on myself and not anyone else. I am not ready to make any major changes to my life right now and my health is not saying I have to. I can enjoy this moment and stay put. I don't have to push myself ahead to what will happen next. I can enjoy now. And all my loved ones understand and love me. One decision made is to find out our options for cottage. We are meeting a Realtor Sunday for a market analysis and to find out our options. It is in a resort area, near Lake Michigan so weekly rentals could bring in some money and allow us to put off a decision to sell. I did all leg work and will let my husband handle from here. We will both be in on decisions. It was such a relief to not have to make so many decisions all at once. I had a great day! I stopped to see a close friend, had a long visit next to her pool. Lots of sunscreen and then a move to shade to handle the 92 degree heat! Thank you, all for being here! Susan

First I am so grateful for good results on my scan! It is great to have so many " unremarkable" organs when I had so many issues just a few short months ago. Keeping positive that my liver will be "unremarkable" too (or at least stable) and it was just a matter of having currents comparisons. I will deal with that this fall after my daughters wedding September 1st. Today I am dealing with making decisions while I am healthy and my mind is clear and functioning. My time-clock for my life is in a different time zone and I am trying to make the best decisions on how to use that time. I had to make contact with a Realtor to find out the value of our vacation property and cottage as far as selling or renting it out. We have been rehabbing for several years, so there is a lot of time, money, effort and headaches,sometimes. But we have loved it. Now I have lung cancer. My treatment is on the other side of the state. My family is on the other side of the state. My sister has a small condo I can rent this summer to spend some more time with my sisters, their families and my folks who are aging very quickly right now. It became available suddenly when (and yes, this is true) the roof was struck by lightening and a hole blown right through. The current renters moved out, even though the hole can be repaired. They sort of freaked out. My sister is willing to let me rent to try it out without a lease for a couple of months. I have lived about an hour and a half away from them for about 15 years, near my husbands family. This is my chance to go to the lake, catch a movie, get pedicures, grab a coffee, hang out, and just in general reconnect with MY family. My treatment center is in Ann Arbor, where all my family lives. I stayed there while I went through chemo last summer and fall. Current treatment is oral, so I do not need to be there so frequently, so I am back near my husbands family. Alone, at home 10-11 hours a day, while my husband works. I do see friends or my in-laws sometimes, but lots of NORMAL people work. They aren't as available as I am. It seems like the right thing to do. Seems like the puzzle pieces are falling into place. Long term, I know with stage 4 cancer, I will need more treatment, more medical care than I can receive where I live now. And that also means seeing my husband on weekends only. We had done that for 2 years while I was trying to get a permanent job near our cottage. I worked as a contract worker for those 2 years, but that ended when I was diagnosed last summer. But, that means selling or renting the cottage. I wonder (and I am sure there are others) who had to ask their spouse or loved ones to make sacrifices and changes to accommodate them in their cancer care. It is not just my dream, but my husbands dream of retiring near Lake Michigan that I am yanking the rug out from underneath. I contacted the real estate agent. She is looking into it, and will get back with me when she can tell me what our options are. I felt like I had eaten a bag of cement after I got her email reply that she would be glad to work with me. And when I told my husband ( I had discussed it with him, but he was dragging his feet a bit) I felt so sad. Cancer does have it's up sides....don't ask me to list them right now, but it also forces so many hard decisions. I don't feel like a really strong person. I have so many weaknesses. It is just so HARD to decide what is the right thing to do. I feel like if I need to make changes, it is best to do them while I can think, (24 hour morphine really messes with your thinking and reasoning abilities) I am pain killer free right now. My sisters are really wanting to spend some time with me. They are all younger and have jobs and children still at home, so their time and lives are a lot less flexible than mine. How do you know when you are making the right choices? It feels selfish. Can I think of myself first right now? I grew up in a family where GUILT was sort of a family motto. I don't think I need to mention which religion I was raised in for you to figure that one out. Even though I never practiced that religion as an adult, some things are hard to get past. They become such a part of who we are. I want to do the right things. For everyone. It just seems really hard sometimes to separate ourselves from the responsibilities we feel for others. Any opinions on this one? Susan

As an ALK NSCLC patient being treated with crizotinib, I found this information very relevant and hopeful. So far my treatment has produced very good results! Let the research continue! Every day there are new discoveries and survival rates are increasing.

I did not get this posted yesterday, but I had a pet incident yesterday too. My little (5lb) orange Pomeranian, Gracie had a seizure. She has had them before, but his time she stopped breathing. I was holding her after she fell to floor and stiffened up, but as I held her she went limp and her tongue was hanging out, she was not breathing, I thought she was dead, my husband took her and massaged her body and chest, after what seemed like forever, she started to make some gurgling sounds, and then after more time passed she opened her eyes a little. I was sobbing. She is only 5 years old. My older (10 years old) blonde Pomeranian, Annabelle is as healthy as a horse. I was not prepared to lose Gracie. And, again, someone is looking out for me. She came back. And she is back to normal today. My vet tells me those tiny little dogs have such problems because of the the inbreeding to get them that small. I was sorry to hear about Piper the duck and Judy's Labradoodle. Pets add so much to our lives! Susan

Janet: Thank you for letting me know I am not crazy. I really appreciate the reassurance. We have not dealt with cancer or even death in my immediate family. Of course, grandparents have passed, but none of my siblings, their spouses, children or even my parents. We have been blessed and of course I have not gone anywhere yet! This is a new experience for all of us, facing my mortality, and I have already had a reconnection with my family, especially my three sisters. I was the oldest, so first to go to college, first to marry, first to have a child, first to live in three different states away from Michigan. I felt out of the loop, and my next youngest sister, with whom I was very close as a child, said to me recently," Why did we wait 15 years to reconnect like this?" I currently live about 90 miles away from them, but they live in Ann Arbor where I go for treatment. I am the money organizer in our family and my husband keeps promising to take that over, but so far has not. He is working, but I was even paying the bills while I was very sick. I could barely sit at the computer and make the online payments, and it is a miracle, with my mind as it was,that I never missed a bill or made any mistakes. I lost my long term job 3 years ago, when the business closed and we carry a private insurance policy. Thank goodness we did not let our coverage lapse. It is expensive, but we made the choice to carry it anyways. Our deductible is high, but after out out of pocket expenses limit is met, they cover everything. But, the first few months of the year were expensive. I can only do what I can do. I may have to cash in the small 401K I took when my job ended and try to make ends meet. It does seem our needs always do get met. Just when I think we will have a crisis, Jim's boss will hand him a bonus. I know someone is looking out for us. My faith has always been a challenge for me. Sometimes I do better than others. I laugh when you talk about taking a "slug" day. When I have a day like that I think of it as a day to recharge my peace and serenity battery. Sounds like you use it the same way. Thanks for the encouragement. We all do the best we can and the most important thing we have to remember is that WE ARE NOT ALONE! Susan

Thanks for your support. Intellectually I know you are saying is true. but sometimes emotions defy logic. And that I guess is what I am trying to sort out for myself. It was comforting to hear how you feel as caregivers, because that is exactly what my family is saying to me.

I know it probably sounds crazy, but I have been feeling guilty, or maybe sadness is a better word, about how much my lung cancer has impacted my family emotionally and financially. The cost in all respects seems too high for my husband, daughters, sisters and parents, to bear. I feel like I have been the cause of the loss of my own and my husbands dreams and plans for retirement at our cottage. I know we are never promised tomorrow, but it seems so much of our life right now revolves around me and my cancer. It is the center of a universe I did not choose for myself, but I would give anything not to be in. My loved ones do not deserve this. We are making so many changes and adjustments to acommadate me. I am so so uncomfortable with the idea of others giving up and sacrificing their needs for me. I did not choose cancer, it chose me, but I still feel like I am at fault in some way. How have others coped with the financial and emotional burdens placed on their families by their LUNG CANCER? Susan

Dani: I will be thinking of you today as you meet with your oncologist. Ask questions and listen to your suggested treatment plan. Don't think too far ahead. Take each day as it comes. Treatment can be tough sometimes, but you do get through it. You are stronger than you know. There are many here for support. Let your loved ones help you. I am also stage 4, have been through chemotherapy and am now doing well on a treatment that was not available outside of clinical trials when I was first diagnosed August 9th, 2012. It has been a miracle drug for me. I appreciate every day I have now. There is hope for you and you are not alone in this journey. Susan

Judy: I can't speak for Katie's intentions, but from my own perspective I have enjoyed and been given hope by what you contribute to this site. I have been inspired and given strength by your story. You have been through some very hard stuff. This support community has so many different forums with a wide range of topics. So much good information and so many personal stories shared. Some days I am looking for a serious topic to be answered and some days I need to smile because my heart just can't take any more pain of my own or those who are sharing theirs here in this safe place. I have found both here and you have touched my heart. Please know that. I don't feel like there is a wrong way or a right way to use this site. It is for US! LUNG CANCER SURVIVORS!. I truly feel Katie is an advocate for us and has a true love for all of us going through this sometimes horrifying journey. I wished I could give you a big, long hug after I read your post. I am thinking of you! My fellow Michigander! Susan

I am very new here. I was very grateful to find a place where were there are other lung cancer survivors willing to listen and answer my questions. Not everyone who visits this site will be comfortable sharing their deepest fears in a forum, but they may be able to read a post from someone else to whom they can relate. And gain some comfort and support. We are all human and all satisfy our needs that suit us best. I like to talk. I ask a lot of questions. I am lookimg for answers on how to live with lung cancer. I have serious questions and I like to hear about what kind of flowers someone planted for their patio. I want to be a well rounded person and don't want my life to just revolve around cancer. When I was going through chemo I had not discovered this site. But, now I have and I have found answers and support for where I am now. I appreciate the people who do post, my thoughts are with those who do not post a question, but gain some insights from the many survivors who have left wisdom and support even though they are no longer here. It is all invaluable. Thank you to Katie B and all those who visitor post on this site. You all give me hope! Susan

I was diagnosed with stage 4 lung cancer last August. Everyone responds to chemotherapy differerently. You are doing the right thing to let your medical team know your husband is having a bad reaction. I also had much vomiting and waited for awhile to let my doctor know. I finally called and let them know and they told me to go to my Cancer Centers Urgent Care. I was severely dehydrated and my electrolytes were severely imbalanced. They were able to treat me and gave me other meds for nausea and vomiting. I have a great oncologist and he told me he would rather hear from me and have him be able to make the decision about my symptoms being normal or acceptable. It is not necessary to tough it out. That is what your medical team is for. Chemotherapy is tough, but there are things that can be done for the patient to make it more bearable and safe for the patient. If you are worried about your husband call and let his doctor or on call nurse know what is happening. They should be able to advise you. There is always someone on call in oncology. this is a wonderful place for support and to ask questions. I am still surviving with stage 4 cancer. I made it through chemo. There are lots of resources on this site. All the best to you and your husband. My thoughts are with you as you get through this challenging time.

We are out and about today. Jim is driving and I am along for the ride. We are at one of his friends projects. He is restoring a house for his daughter that is on the National Historic Register! I will try to include a picture, but I am not always the best at compressing files. I love historical places and love that people will take the time to restore rather than tear down. Judy, the closest I can probably come to your experience is when I was going through chemo and even though my 3 sisters were all busy with their jobs and families, someone always made time durig tbhe week to stop and visit, take me on an outing to Meijer or drop by some food to try and temp me into eating. I was not much fun during this time. I had to ride an electric cart, carry a grocery bag to vomit into, and ate almost nothing they brought me. But, they did it anyway. I watched Dr. Zhivago with my 11 year old niece. She sat through all 3 hours of it and me getting sick all over myself when I could not jump up to the restroom fast enough. I felt very cared for and loved during a very tough time. It made it bearable.

I was actually out in the fresh AIR today. I stayed in most of the week, but decided it was time to venture out. It was drizzly or pouring rain all day, the same weather that is headed Janet's way tomorrow. I did some "unshopping". I admit to sometimes doing some recreational shopping. I always keep my receipts and keep the price tags intact. If I do not use or wear it in a month, back it goes. I also needed some household cleaning products. I ate lunch with my husband ( he works about a mile from my favorite shopping center) and ended the day with my grandson and youngest daughter stopping over for a visit. We watched movies, ate a cheese, cracker, broccoli and dill dip plate I threw together and finished off with key lime pie I had made earlier in the week. I am now sitting in my husbands pickup while he and a buddy cut stair stringers in his shop. It is about 9pm and we are going to grab a sandwich before we go home. This is a late night out for us. Hope you all have great weekends! Susan Have a great ret of the day! Susan