curlysue50

It has been one year today since I got my lung cancer diagnosis. I am not cancer free, but I am still ALIVE! One year ago I was not sure how long I would be here. So grateful for every day. Susan

Katie: I know I have things pretty good right now. I think my scans on the 13th and Oncologist appt on the 17th, have made me reflective again. On the up side, in 9 days I will be a one year survivor. Last winter it did not look like I would hit that mark. My sadness comes not for me, but mostly for my loved ones. I had such a great time with my sisters and grandson this past weekend. My grandson and I got to polka and he even let me twirl him a few times once we got the hang of it. I want him to remember me. I had wonderful grandmothers, one lived to 89, the other to 94. They were a part of my life. I want that for my grandson and any other grandchildren to come. I hope it is okay to express some of these types of feelings here. I do have many positive moments. I read the posts of many other survivors too. Sometimes it seems their optimism is more than I can attain for myself. I feel guilty, as if I am falling short, by putting my fears or apprehensions out there for all to see. I know there are others who must feel the same way. You had put a post out awhile back on a survivor who was frustrated about people who say they "understand" our cancer. I can tell you for myself that there is no way you can truly understand what it is like to have cancer, unless it has had you. You can empathize, you can provide help, you can listen, but you can not know. I am trying to learn to not let my fears and sadness rule my life. I have had some very positive moments in the last year. LUNGevity has had everything to do with that. This is a safe place to express myself without censoring my feelings to spare others. Because the survivors here DO understand how I feel. Thank you. Susan

I still have Hope, too. There are just some days when it feels foolish, like back in high school, hoping that nice boy I had a crush on would invite me to the prom. It never happened. Believe me, I read articles, watch the news, search the web, ask my oncologist questions about treatment, but so far the good news is my current treatment is shrinking much of my cancer, I feel pretty good most days, I can do many, if not ALL things, but unless there is some miraculous breakthrough, I won't be buying a dress for the prom. And that is okay. I made it through my life without that experience, as I am sure many others have. It does leave a little tender spot though, as you can tell by me bringing it up so many years later. I feel the same about my life. Once you have had cancer in your body you are not ever the same person. Many people go on and survive many years cancer free! Wonderful progress has been made in many areas. Where is that wizard that is going to wave his wand for the stage IV lung cancer survivors? Maybe he will show up and ask me to the prom, after all.

I had a great weekend. I did all the sorts of things I did before my cancer diagnosis. Stayed to the end of a BBQ and fireworks, which meant I was home and in bed after midnight. I got much less sleep than usual and inhaled bonfire and 2nd hand cigarette smoke. The party was outside and I don't have control of others actions. I wanted to be included and tried to move away from smokers when I could do it gracefully. Saturday I went with my husband and grandson to Ann Arbor and went to an oudoor event my family has been attending for years. Home by 8:30pm but my grandson stayed over, so it was a late evening. Sunday am I made waffles and ham. I tried to sleep a bit, but my grandson kept checking on me starting at 6:30 am. We had great fun and he did not want to go home, but he left about noon. By 2pm, I needed a nap and slept for over 2 hours. When I got up, I was still tired, but got showered and dressed. And then I started to feel really nauseous and vomited. Something I had not done in over 2 months. It was a wake up call for me that I still have cancer. Even though my chemotherapy is oral. It is still active treatment. Some days I forget that. I have to remember I have limits and need certain amounts of sleep and relaxation to stay healthy. I will not get any awards or medals for pushing myself beyond my limits. I have stage IV lung cancer. I will not be cured or recover. I can not have surgery to remove all the cancer in my body. Some days it overwhelms me to think about that. Most days I do not think about it all day long. But when I vomit, my body is reminding me, that even as good as I feel and look, there is still lung cancer residing in me. Stage IV cancer sucks. I try to keep positive and focus on the things I CAN control. Stage IV is not something I can change. I can not change it for me or for the friends I have made who are in the same club. I can only try to love myself and them. To help us make our way through treatments that won't end our cancer, but will give us more time. To live, to love, to make a difference for those who follow us. This weekend I did not want to be reminded I had cancer. It was tough. But, today is a new day. And I am still here. I will sleep like a baby tonight. I appreciate the support I get here to help me sort through some of this tangled mess of emotion. Today I live with hope that more good days are coming.

Looks like a beautiful summer day here in Michigan! Sunshine and mid 80 degree temperatures. After feeling sorry for myself and whining quite a bit last weekend, I made plans for myself this weekend. Finding fun things that I CAN do, rather than moping about and feeling bad about what I can no longer do or enjoy with my physical abilities now. How you look at your life REALLY does determine your mental attitudes and ability to enjoy your life. Tonight we are going to a 4th of July cook out at one of my husband's long time friends. I have gotten to know them over the year's Jim and I have been married and we have many mutual friends. It was too dry on the 4th for fireworks and we have had a little rain since then, so we shall see if there will be fireworks or not! I am making a peach/blueberry slump (which is basically a cake batter poured over the fruit mix and baked) which should be the last of my fresh blueberries finally consumed. Saturday we are taking Dylan (almost 5) to a German festival in Ann Arbor. My brother-in-law has been a lifetime member of a group that sponsors a fund-raising club that puts on a German style dinner, homemade desserts and authentic German folk dancing. My brother-in-law and my 2 nephews and niece all participate in the performance.(costumes included). It is held outdoors in a private wooded park with picnic benches, a pavillion, polka band for dancing and a huge sand box for kids. They spray for mosquitos, so no bug spray required. It should be fun. They do it last Saturday of each summer month, (June, July and August). I have not gone in years, so decided it would be fun. It opens at 4pm, dancing performance is at 6:30pm, so we can still get home at a decent hour. Dylan is going to spend the night with us. He is already planning which movie he is going to watch in OUR bed! I hope everyone is well and has some summer fun (or relaxation) planned for this weekend. Susan

Kurt, so sorry for your loss. Lung cancer is a disease that is discovered late and is often so advanced that it can not be treated effectively. I am also stage IV and was very sick before I was diagnosed. I was able to find treatment and am still here almost one year later. Many others are not so fortunate and I am so sorry your father was one of these victims. My thoughts and prayers are with you and your family. Sincerely, Susan

Janet: Well I am grateful to not be sitting in a Cancer Center waiting room today, but I wouldn't mind a little of that air conditioning. I drove my husband to work this morning because his truck would not start. We were going to drop it to the shop to be looked at because he had been having issues, so I was up and dressed early. When I got home my house seemed very quiet except for the ticking of our antique schoolhouse clock. I began to feel very warm and then it dawned on me. The air conditioning was not running, no fans, no fridge, and since we have our own well, no water. Ugh. It is supposed to be in low 90's again today and is very humid. House is already up to 80*. I have to make the 80 mile round trip to pick up Jim tonight, so may leave a bit early and hang out in Lansing at the air conditioned mall. I do not have a cool ocean or lake to float in to beat the heat! Hope all goes well, and you can rest assured that I will NOT be wearing my sweatshirt today! Susan

Perfection is not always necessary.

Janet: I really appreciate you sharing your thoughts here. I have night time aches and pains that are not horrible but worrisome. They seem to be worse when I am stressed and outside of my comfort zone. I do know I have damage to my spine and ribs from mets, but had not talked to anyone about what a "normal" pain level would result from that damage. My scan about a month ago showed stability, but I worried about it until I noticed the correlation between pain levels and stress. My husband is having difficulty with me not wanting to go to our cottage EVERY weekend. He seems hurt and talks as though I have just "decided" I don't want to go as often. I have told him how what I used to enjoy has become "stressful". The 1 1/2 hour drive, packing clothes, food, and all my meds. I take 3 injections a day, so that also includes things like alcohol wipes, syringes and the medications. It sounds like you have had some time to work out and accept your relationship with your husband and how your cancer has affected it. I am still working on that. We are used to spending a lot of our free time together. So, when he goes to the cottage alone, I am lonely at home. I am trying to learn to put my health first and not be influenced to go along and then be miserable all weekend. I am a work in progress. I feel like we are travelling similar paths, so I can really relate to your thoughts. I am sorry you have not been feeling well. It is a part of this experience that I have a hard time accepting. I hate that anyone has to hurt and suffer. It is something we just can't control, but have to find a way to live with and accept the best we can. I am thinking of you floating in the water and running your toes through the sand. That makes me smile. Susan

Eric: You are absolutely amazing! Susan

I have noticed that my body's tolerance for stress and anxiety seems to be much less as I deal with cancer. I have always been a bit "excitable", but I notice a lot more issues with my physical and mental health when stressful situations arise. Quiet, peace and tranquility seem to make my body feel so much better. Too much travel, visiting, decisions, frustrations and my level of pain seems to rise. My ability to "cope" does not seem to be as effective as when I was "healthy". Has anyone else experienced this? It would seem since I no longer have a job that I would be more productive at home. I do meals, grocery shopping, laundry, bills, and general light housekeeping. I thought since I was feeling well that I would be able to do some hosting of guests at our cottage. And now I find it is making me feel overwhelmed. Am I crazy here? I just want to rest, relax and keep my serenity and sanity. Is that crazy? Susan

Dani: I hope you feeling and doimg better. You have been in my thoughts and I have been meaning to post some encouraging words. I have been dealing with some issues of my own that seem so small in comparison to what you are going through. I feel grateful to be doing as well as I am, but have been experiencing some anxiety about scans I have coming in August. I have been having some pain, lack of appetite, and nausea issues which could just be medication side effects, but it terrifies me to think of what could be coming if my cancer is on the move again. I have not had any surgery, like you. I really admire your strength and it is perfectly okay to "lose it" in these situations. These are very hard situations and we are still human as we experience them. Having cancer does not mean we can not express pain or sadness when we are feeling it. We can and should. Hopefully you have good support, it sounds like you have family around you. Keep up your good attitude and if you have a meltdown once in awhile, that is okay. As stage IV patients we have MANY emotions to deal with. Ask for support. Talk to family and friends. Share here at LCSC. Chances are if you are feeling something that is hard to define, that there is someone else in the lung cancer survivor community who has been through something similar. In sharing you are building your own strength and acceptance and are also providing hope for someone else. You are in my thoughts and prayers. Susan

Door knob

Clowns can be very scary!

Goin' fishin'

Judy MI made a post Monday July 9th in the test time/ updates forum. She got good results on her most recent CT scan. Check out that forum for her post. I think it was called CT results, but you can also see her joppette sign in name for July 9th, 2012. It was great to see she is doing well. Susan

Inn keeper

Top dog

I am trying to stay home today and take care of a few things I have neglected for a bit. I watered my flowers in pots and shady plants that normally don't need it, but we are having a drought here in Michigan. I can't remember our last rain. Temps are better in mid-80's, but we are supposed to hit 90* again tomorrow. I checked my water lily garden built in the base of an old silo we took down and the shallow upper end had no WATER! It is still moist with mud, but I have never seen it that low since we built it about 13 years ago. The deeper end had some water. So I pulled the hose out there and am running water down the rocky water fall to fill it. I have been checking it because it looked low, but not sure how it got THAT low. I had set up a tiny bird bath/fountain with my leaky garden hose that the birds were really enjoying. They were giving me dirty looks as I dragged the hose down to the pond. I made my first appt for a hair cut since my sister shaved my head during chemo. It is still not real long, but very curly/frizzy. I am going to get it trimmed up around my ears and neck and try to get it to look like a "style". It is tomorrow afternoon with the same lady I have been going to for about 10 years. She has not seen me since early last year. She has been cutting my husband's hair since right after high school, so he has kept her up to date on my progress. I have a scan coming up in August and no matter how hard I try, I keep adjusting events, plans, chores around that date. All those if this, then that or if the answer is that then I will. I try to not do it, but the thought keeps popping up. My oldest daughter gets married in Columbus, OH on September 1st and no matter what scans say, anything after that will have to have me free on that date. It is non-negotiable. Looking forward to the weekend which is about 5 hour drive for me and my husband, it will be tiring, but well worth it. I am going to make some banana buttermilk nut muffins after I finish this post. I have bananas that just won't last another day. And then maybe some reading! Hope you all are doing the summertime things you love to do! Susan

Katie: Thank you for the encouragement. For me the battle with cancer has been just as much an emotional and mental struggle as it has been physical. When you are physically weak, and exhausted others can usually see it. When it is emotional and mental, you can hide that a little easier. It is not easy for me to be open with my feelings because I was not taught to share them. I know my family cares for me, but it is not part of my nature to ask for help, until I am desperate. Probably one of the reasons it took so long to get my diagnosis. I am working on it. This site has been a safe place for me to open up and share. I needed that. I had been told about the Caringbridge site by one of my cousins. It would probably be good for me, but I don't feel quite ready to be open with all my family and friends in quite that way yet. I have sent out emails to let them know positive news, but not some of the more personal feelings. I go mid-August for my updated CT to see how my liver is REALLY doing. Maybe I can set a goal for myself to share the news, no matter what the results are. My family lives about 90 miles away. I moved here where my husband's family lives about 15 years ago when we got married. They are great, but we really did not get close until I got sick. I miss my own 3 sisters and their families and have really gotten lonely being home while the rest of the world works and goes on living. I have made small steps to keep busy and go walk a mile a few days a week. I am out of the house, but still alone. I am okay. I am doing one day at a time and appreciate having a place to sort out the jumble in my cancer riddled brain! Susan

Paper trail

Janet: Everyone wants to visit the "sick person", but because I do not look or act "sick" they tend to forget. I found it interesting you mentioned friends wanting to visit you when you are sick, but when you don't look or act "sick" people easily forget. I had this exact discussion with my husband on Sunday evening. I have always been the one to pop into my friends houses for a visit. Make a call and see how things were going. Last Fall and Winter when I was so horrible physically disabled with my cancer, I had lots of calls and visitors. Now that I appear to be on the mend because my treatment is working, I find myself taking on more and more. I drove my daughter and grandson to our cottage on Friday and returned Saturday (close to 100 miles each way). Planned and coordinated cookouts, shopping trips and swimming at the beach. I had my a year old grandson over to the house on Wednesday for 5 hours and another 6 hours on Thursday. My husband has been out at the cottage for the week completing some trim work, that needed to be done, so I was the chief playmate and companion for Dylan. Anyone who has spent any time with a 5 year old boy, knows how much energy it takes to keep up. So, by the time Sunday rolled around, I was exhausted. And then Monday I drove my daughter and Dylan to Ann Arbor, (90 miles to the east of here) for an eye doctor appt. My daughters car is older and she is not comfortable taking it that far from home. Then I had planned a surprise birthday party for my daughter (her b-day is the 14th) with my 3 sisters, cousins and my parents. I did ask my youngest sister to provide the cake and she was generous enough to also provide a lovely lunch. I was going to try and bake and take a cake myself, but could feel myself running down. I have been trying to walk, which is good for me, but my hip seems to be getting irritated, which both concerns and terrifies me. It was hip pain that put me in the hospital when I was originally diagnosed. There were other things too, but the unbearable pain, was the final straw. I think it is just previous damage and I have been "over doing it", but it is hard to let family know you need some TLC. They start getting concerned and asking, "What's wrong?". I hate saying those words," I have stage 4 cancer, my body is damaged, my back has weakness in many vertabrae, my ribs are weakened in many places." I so badly want to keep up and be the mother and grandmother that I have previously been. I feel like I am bringing up the hurt for them again. I don't want them to worry. I want to bake, and plan, and play. I just don't feel like I can do that every day right now. I could use a friend to come visit me at MY home. I could use a phone call. Someone to fuss over me. I made a nice dinner last night with steak sliced thin and simmered with fresh mushrooms, buttered noodles with fresh parsley from my herb pot, and freshly sliced and fried zuchinni squash. My husband loves a meal like that. But, I did it after an 9 hour day out to Ann Arbor and back. Not trying to complain here, but it is hard to draw the border lines because it makes me feel selfish and ungrateful. I have a hard time expressing my needs, unless I am in such a weak state that I actually can't do it at all. It is hard to put me first I suppose. I am going to try and take it easy today, but I did promise buttermilk fried chicken for dinner. I will do it in steps and try to not feel guilty if I do not go walk a mile today. I think I will try to stay in and let some of my aches and pains ease a little. Susan

Randy: Your wife was a remarkable woman. I am doing my best to do all I can do and be the best person I can. I have always been a fact gatherer. Looking at all the details. Looking for the correct answers. Analyzing things to the extreme. I suppose you have noticed that about me. Can be a fault, but it can also be a gift. Depending on the situation. I do try to go along whenever I can and even went to events (Wicked, with my sisters at holiday time) when I felt horrible and was just hoping I would make it through the fabulous performance without vomiting, family get togethers and walked up and down stairs so I could spend the night with family when my bone mets were so painful that I was on 24 hour morphine. I keep many of my thoughts to myself. I don't express my uncertainty to my family. I don't want them to worry. I imagine a lot of others do the same and that is why I share my thoughts here. My oncologist does not believe in giving time frames. But, as a fact gatherer of course I have looked at the statistics. And of course I could get run over by a truck tomorrow. I am trying to be okay with cancer. I try to ignore it, but I do have physical symptoms that sometimes can't be ignored. I have to take care of myself. I don't focus all my energy on cancer, but I have had issues in my life and my personality that I would like to resolve and overcome. And it is really helpful to hear how other cancer survivors are living their lives. Susan

This has been on my mind since I read a blog post Teri Simon (The Flying Elephant) wrote. When you are diagnosed with stage IV lung cancer you are not told there is a cure. You are not told you will ever get NED results. You are not told you will ever be done with treatment. You are not told you are in remission. You ARE told they will do whatever they can to prolong your life and give you as much quality of life as possible. At least that is my experience. In Teri's blog she said she had been told much what I had, but she wanted her life back and she was going to hope for a miracle. That she would be cured.(at least that is how I read her post). I have been wrestling with that ever since. I have reevaluated and reformed my hopes for life.The parameters are not are far-reaching or extended as far into the future. I hope I will be able to attend my 27 year old daughter's wedding September 1st this year. I hope I will enjoy another Christmas. I hope the spots on my liver are stable like the larger tumor and only looked "new" because the comparison CT was not current. I hope I can attend Hope Summit 2013 and meet some of the people I have met here and can spend some time with other lung cancer survivors. That is about as far out as my HOPE reaches today. I feel like hoping that I will live to be 94, like my grandmother is unrealistic. Hoping that my husband and I will be able to retire and build a retirement cottage on our wooded property near Lake Michigan is a pipe dream. Staging in cancer is done for a reason. If all cancer was equal, then all treatment options would be the same and all survival rates would be the same. Cancer cells have travelled through my blood stream and has been carried to all areas of my body and could become active anywhere. My current treatment is working well, but without it, my cancer is not cured, or even in remission. I feel like if I hope it will all just disappear I am like an ostrich with my head in the sand. That I will miss out on what is now because I am EXPECTING more time than I have. It seems as though the smaller sphere of my life is a happier one. I do things I might have put off because I might not have another chance to do it. I appreciate more what I have NOW. What I am conflicted about is the question of, "Does this make me a negative person?". Does this mean I don't have faith or hope? Because I feel like I do. I just think it means that I have accepted the limitations of my life and hope for smaller things. Things that are closer in time. Things that are most meaningful to me. I know each person deals with cancer in their own way. Makes their way through the best way they can. There is no right or wrong way to believe. I hope that I can stay as accepting as I am right now. I feel well, I am not going through infusions, (I take an oral genetically targeted therapy). I can walk on my own, I have let my handicapped sticker expire and I can do the most of the household chores I need to do. I know at some point it will get harder again. It is easy to forget in here that many of the LCSC members are going through hard times and treatments again that rob their bodies of strength. Because the posts they make still speak loudly of their faith and hope for their lives. It becomes real again when I hear someone say they spent the day in an infusion chair. I have been there. And I will be there again, someday. I hope that I can be as strong then as I feel now. I also want to point out that I am not in any way diminishing the struggles and tests of hope that other stage lung cancer patients go through. I have not had to deal with any surgeries, because there is just cancer is so many places they could not get it all out. My husband asked once why they could not just cut it out and my doctor answered it would be like cutting me up with a cookie cutter and still they could not get it all. I Have not yet had any radiation. I know other stage cancers also deal with all sorts of chemotherapies. But, some of those other stages will hear the word NED, or remission. Those are things they can still hope for. That is not a promise or guarantee that it will never return. Just that it is not here for now. Cancer of any stage is just plain hard. Maybe I have answered my own question. Just trying to get it out of my head, I guess. It seems to me that hanging onto hope to be CURED of stage IV lung cancer is like trying to hang onto a bubble. You might get it to stick on your hand for a moment, but it is going to pop eventually. Thoughts on this one? Susan

Happy 4th of July everyone! Hot here in Michigan at 7am I had turned on the air conditioning. Doing dishes, laundry and cleaning before it gets any hotter. I went outside to change hummingbird nectar and it is so hot it was hard to breathe. We will see how long I last at the rubber ducky race at the river in town today. Going with my sister-in-law, niece and 3 little girls, plus my grandson Dylan. Hope he will be able to handle all those females! It should be hot, but fun! Susan