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curlysue50

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Everything posted by curlysue50

  1. Thanks, Randy. I do sometimes hesitate to vent, but as you know, I usually spit it out, eventually. Sometimes I know it is just what I have going on in my head and not the fault of anyone else. Sometimes I know it is someone else's attitude that needs adjustment. The financial aspects of cancer don't get a lot of discussion, but I know it does have an impact on cancer survivors. I don't want anyone to feel sorry for me, but paying big bills to stay alive can be a struggle. This week I found out my husband and I make too much money to qualify for the drug assistance program at Pfizer that I thought would help me with my $5000 deductible in January. ( my meds cost $10,050 a month). I am going to look for other resources. We still owe several thousand dollars from 2011 when I was first diagnosed. We have been making payments. I know I am not the only cancer survivor dealing with this. It just makes it hard when I can feel my husband getting resentful. It is hard to work with things we can't control. I appreciate the support here. It makes it managable. Susan Sent from my SCH-I405 using Tapatalk 2
  2. I am embarassed by my rant from earlier today, but I realize cancer not only affects the health of our bodies, but our emotions, minds and relationships as well. As much as I try to keep functioning as normal, there is much I have not dealt with yet. The same goes for my husband. I was tempted to just delete what I wrote by editing the post, but someone told me I should not censor myself. The frusrtations and guilt are real. I just have to figure out how to manage and cope with them. Sent from my SCH-I405 using Tapatalk 2
  3. My husband helped me so much while I was going through chemo. I have been fortunate to have found a genetically-targeted therapy that has pushed my stage 4 cancer back and maintained stability in areas that have not cleared. When I was the most sick, I was required much care. Now, I am able to do so much more. I still face some issues, weakness and pain in spine and ribs. Occasional vomiting and nausea. Limited lifting ability. But, I CAN drive, get groceries, fix meals, fold laundry, pay the bills, pick up clutter, dust, keep counters clean, make the bed etc.... The issue seems to be as we get further away from my total helplessness, my husband seems to be getting more resentful about me being home during the day and him going to work. He makes snide comments almost every day now when I ask him how his day was. "I am tired, I was WORKING all day you know." He complains about helping with dishes. We have never had a dish washer, and it tires my back to stand a long time to do dishes. I always do my own baking dishes, sometimes do the meal dishes,but when I suggested a dishwasher would make my life easier, my husband said absolutely not and HE would do them. I had no choice but to agree. He tends to let them build up and when he does them there is a lot of huffing and puffing and pot banging to let me know he is not happy about doing it. Yesterday I put up our cottage for sale. We had gone to a financial advisor at the beginning of the summer. To try and reorganize BEFORE we get into any trouble. I have handled our finances and the advisor said our credit cards were all at our better rates than they could negotiate. Financial advisor suggested we liquidate some our assets and pay off credit cards OR increase our equity loan on our home to pay off all credit cards. My husband refused to increase the loan on our home or to even ask our bank about it. So, I chose the other option of selling the cottage. We have not even SOLD it yet and my husband is telling me he wants to pay off our mortgage with the money. Our mortage payment is much less than credit card payments. He does not know this, even though I tell him this because he does not look at or pay any bills. (Just the morgage because that is at the bank where he goes to deposit his paycheck). Paying off credit cards will free up more monthly money. When we got married 15 years ago, Jim cashed his paycheck and carried it around in his pocket. Spent until it was gone. Did not carry car insurance which cost us $2500 when he got into an accident. He had bill collectors calling almost every day. I paid everything off and I knew, even though I was not perfect, I should handle the bills. I am the responsible one, when it comes to my financial obligations. So, to make a long story even longer, and I am sure I could have left out some details, my husband is resenting me being sick and costing us so much money. I feel we should pay what we can and he is talking about filing bankrupcy after I die to get rid of the credit card debt. I MAY LIVE FOR AWHILE! We have to be able to pay the bills until I die! This makes me feel terrible. I am getting disability through SSI. I will also be drawing a small pension from my previous marriage. That will start next month. I feel like I am the cause of all this and now my husband's comments and actions confirm this for me. How do you deal with this sort of guilt? Susan Sent from my SCH-I405 using Tapatalk 2
  4. I worked with a young girl who is one of my daughter's friends. She contracted MRSA and did have to spend time in the hospital, but was okay after being treated. In fact she was just in the wedding in September. At least they have it diagnosed and can keep it under control. It is hard not to worry about your children no matter how old they are! Will keep him in my thoughts. Susan Sent from my SCH-I405 using Tapatalk 2
  5. Happy Wednesday: It is almost 70* out today and sunny, so I think I am ready to push away from the computer and relax a little. I have been reading Killing Lincoln by Bill O'Reilly on my Kindle and it is getting pretty interesting. I am going to try the wicker rocker on the front porch. I am not trying to sell anyone anything, just celebrating that I finally completed a posting to sell our cottage. I have been procrastinating for about 4 months. Did not want to let it go. But, we have to do it. Big weight off my shoulders today. It only took me 4 hours to write, find the pics, have my daughter send lower resolution pics that would upload quickly, and finalize the post. If any of you are interested in seeing my humble piece of heaven here is the link: http://swmi.craigslist.org/reo/3345364184.html Hope you all are enjoying your day! Susan Sent from my SCH-I405 using Tapatalk 2
  6. Eric, if I make it to the British Isles, you will be the first phone call I make! Sent from my SCH-I405 using Tapatalk 2
  7. It was one of those days when I had to haul myself up by the shoulders and force myself out of the house. I took a drive to my favorite fruit and veggie market/ plus fabulous deli and speciality foods and bakery. I found my daughter's favorite organic hard cider that is not sold many places and bought her a couple of bottles for her birthday tomorrow. Found some other specialty cooking items I enjoy and was dazzled by the colors of the leaves on the drive there and back. I was mentally struggling so hard today and really just wanted to fall into bed. It feels so good to be able to reverse my own negative thinking and end the day enjoying a delicious glass of wine. Rare for meN but I felt like celebrating. Plus, I did a lot of thinking that might be actually productive and give me some blog material. Thanks for being here you all! You make me feel responsibility for my own thoughts and actions. Left on my own it could be a long dark time for me. Sent from my SCH-I405 using Tapatalk 2
  8. Here are a couple of pics of Bailey. It is hard to get him to sit still! He likes to sit with his bottom on the pillow and his feet on the floor! Susan Sent from my SCH-I405 using Tapatalk 2
  9. Sent from my SCH-I405 using Tapatalk 2
  10. Sunshine and 35* outside. It is supposed to get up to 60*, so until then I am staying inside under my down lap comforter. I have still been feeling a bit under the weather the last several days. I am still blaming it on the flu shot. The other option might be that I have actually gotten the flu before the antibodies from the shot are formed. After reading the paperwoork, I guess that takes about 2 weeks. I went to the pool yesterday, and did more walking laps around the pool, than swimming. Stil babying my back and shoulder soreness. The feeling still has not all come back into my fingers,after pinching the nerve last week. So, today will be a relaxing day working with Bailey and the doggie door outside for potty trips. Sent from my SCH-I405 using Tapatalk 2
  11. Mike: I am glad you found us here, but sorry for the reason. I have stage 4 NSCLC adenocarcinoma. I was diagnosed August 2011 and am doing quite well for now. It took me awhile to dig up all the facts on lung cancer. I did not get involved on this support community until April 2012. Frankly, for me, all my strength and energy was taken by the chemo and just staying alive. Once I became stable, then improved, I felt the need for some support in figuring out how I could LIVE with my cancer. It has been challenging, but I have found friends, support and perspective here. Caregivers, such as yourself give survivors some of the thoughts and emotions that our actual caregivers might not want to share with us. And you may read some things here that your wife may be hesistant to share with you right now. I try to stay positive, but I am human and some days I am just fearful, or sad. This is a place I can share that without burdening my husband. These folks understand. I can gain new perspective and move on. I can learn it is okay to share my emotions about my disease and am now better at sharing with my husband. I know this is hard for him too. You don't have to pretend to be okay all the time here. There is no judgement, just support and empathy. You are not alone in this. You might want to check out the Just For Fun discussion forum, if you have not already. Many of us share our daily lives, adventures, baking successes or family news there. It is a great way to get to know each other OUTSIDE the realm of our cancer! Also, if you have a particular topic you are looking for others opinions or thoughts, post them in a forum that seems appropriate to you. No formal rules here in that respect. If you have questions, feel free to ask. Welcome! Susan Sent from my SCH-I405 using Tapatalk 2
  12. Thanks for posting these today Eric. I am having some pain issues again today and needed some peace and serenity. These pics did the job!:smile: Sent from my SCH-I405 using Tapatalk 2
  13. Denise: Waiting is always the hardest part. I know I have had some CT scans without contrast. When you have cancer you will be exposed to more radiation and chemicals than the average, healthy person. If they can get the information they need without exposing you to something (in this case contrast) they will take that route. The downside is you have to wait longer to get results, sometimes. I have always trusted that my oncologist knows when it is safe to make this choice for testing. Upside is that your husband's doc must feel there is "time". I know I always want to know right now what is happening. For me it is knowing my cancer might be spreading and growing while we wait to schedule my next test. I had to wait 2 months this summer, and my results ended up being stable with no growth, but it was an anxious time. I have really worked on knowing that some things are beyond my control and to trust that my doctors will give me the best care possible. I was anxious, but did not let it rule my life. Hope you will get results soon and whatever the news, your husband's doctor will have a treatment plan. I won't suggest you don't worry, or that this type of result isn't disappointing, but you can get through and handle this. Come back and let us know how you both are doing. We will be here for you no matter what you have to face. You won't be alone. Hugs, Susan Sent from my SCH-I405 using Tapatalk 2
  14. Eric: I for one am very grateful your GP was wrong! Since we only met here online less than one year ago I would have certainly missed out on all your wonderful stories and positive perspectives. Congrats on out living his predictions and keep up the trend! I also am missing the sunshine and notice how quickly it is dark at night. I don't mind the cold that much, it is the big snows that bother me. It makes it hard to get out and about. Since you are constantly on the go I imagine snow might cramp your style a bit! I live down a country road that is not paved. Sometimes it is 3 or 4 days before a snowplow comes down our road. Often the neighbors will plow out the road with their tractors BEFORE the county snowplow shows up. We are very cloudy and rainy here today, but about 65*, so I had better enjoy it before the snow gets here. No rush as far as I am concerned. My husband made a new wider doggie ramp for our 2 dogs to go out their doggie door to their fenced yard. He added more cleats and side rails so they will not fall off. Bailey is about 3 months old now and finally figured out how to push open the flap. Annabelle is almost 11 years old and was starting to have a bit of trouble slipping. The extra cleats make it easier for her to get up and down. Such spoiled dogs! We are going to make a trip to our local cider mill this afternoon for another gallon of cider. Michigan farmers lost 90% of their apple crops because of early warm weather then a hard freeze that damaged blossoms. The price on cider is a little high, but it is freshly made and delicious. They also have a frozen cider slushie that is out of this world. I might even try one of their warm fresh doughnuts. Hope everyone else is enjoying thei day! Susan Sent from my SCH-I405 using Tapatalk 2
  15. Petunia: That link for medical information is: http://blog.lungevity.org/ask-the-experts/ They should be able to answer your specific questions about side effects and results. They answer questions specifically for this site and it is a LUNGevity page you will post your questions to. I visited the page and it looks easy to do. Best wishes for you and your mom. Susan Sent from my SCH-I405 using Tapatalk 2
  16. Sent from my SCH-I405 using Tapatalk 2
  17. Petunia: I have not had WBR but, I came about 30 minutes from it. I had many brain mets and was taken in for the simulation and making of the mask you wear, bolted to the table, when they do the radiation. My oncologist had been out of town last holiday season, when I had landed back in the hospital and an MRI revealed my cancer was again spreading. The doctors at the hospital referred me to radiation oncology. I read all the side effects and warnings on WBR. It was scary, but it was scarier to think what might happen if they did not attempt to stop the cancer spread. They were contacted by my oncologist while I still sat in a waiting room after signing all the consent forms. He made the decision to start me on the targeted therapy I am on now. I was fortunate. It is working for me. But, I had prepared and accepted that WBR was an option that would give me a chance to continue with my life. I still had hope. I trusted my doctors. I love my family and want to stay around as long as possible. It is normal to be scared, anyone would be. Hopefully someone who has had WBR will notice your thread and answer your questions. I know there are some others who visit this site. For specific medical questions you can go to the Ask the Experts forum on this site and click the link there. It will take you to the place where you can ask a medical doctor your questions. For support I hope someone with that experience will visit this forum soon. I know it is hard to watch your mom struggle, but try to be there to love her and support her the best you can. Keep up your hope and she will be able to gain strength and hope through you. She needs you more than ever. Hugs, Susan Sent from my SCH-I405 using Tapatalk 2
  18. Cold and sunny morning in Michigan! It is supposed to warm up to 60*, and that sounds nice. I am staying inside and have been having fun looking at my daughter's wedding photos. She finally got the digital files, so I will post our family photo here. I am feeling quite a bit better today but, I am still going to take it a bit easy today. I will get my third day in the pool for the week tomorrow! Alison and Noah's wedding and our family pic! Photo credit: January Newbanks Sent from my SCH-I405 using Tapatalk 2
  19. Thanks for the encouraging words, Katie. I have a little pain left today, but this I can cope with. Yesterday was terrible and I do not deal well with severe pain. I am thinking that is somewhat common. I don't think or reason quite as clearly and felt bad about being negative. I do realize those who do so well after being treated for lung cancer are early stage survivors. Yesterdays post was a RSVP to ATTEND my own personal pitty party, I am a bit ashamed to admit. I do recognize my own growth, but do have fears some days about what my stage 4 will bring me and when. I am not letting those fears rule my life anymore. Severe pain will often trigger those fears in me. Still working on finding some peace during those more challenging times. Already planning on how I will "gentle down" my time in the pool tomorrow. I won't give up, I am looking for a place in the middle, where I can take care of myself. You are a great inspiraation and support to me. You say it how it is and don't listen to excuses. You are real and genuine and I truly appreciate that about you! Susan Sent from my SCH-I405 using Tapatalk 2
  20. I have been working at regaining strength and health for the last several months after finding a treatment that is working to keep my stage 4 lung cancer at bay. I have regained so much of my health, but I still have damage from bone mets that have made finding an excercise routine a challenge. I have been swimming and doing some water aerobics after walking aggravated hip and leg pain. I have been getting shoulder and arm pain after my workouts, which I had hoped would go away after the muscles got stronger. It is getting worse. I pushed pretty hard at my class yesterday. I went to bed feeling fine at 11 pm and woke up in terrible pain at 1:30am and sat up in the living room with a heating pad on my shoulder. Now at 9:30am, 2 Aleve, Icy Hot, and more time on the heating pad I am sore, but can function. Usually the pain will last 30 minutes or so, and the heating pad will loosen it up. I read about so many lung cancer survivors who go on to run marathons, triathalons, bike and get back to such great physical condition. I guess I am naturally competive and feel like if others can do it, so can I. I have a hard time not pushing myself. I need to respect my limits and listen to my body. I don't want to be a whiny baby or feel like I am making excuses not to be accomplishing more with excercise. I don't want to feel guilty. I am so grateful to be alive, to be surviving. I don't want to waste time beating myself up for not trying hard enough. Despite my best intentions I am struggling a bit to not feel like I am giving up. Continuing to increase my pain levels does not seem like a good choice. I guess I need to accept and appreciate what I DO have and work with that. As I reread my post, I think the real issue I am dealing with here is that this pain is a brutal reminder of the devastating damage lung cancer has had on my body. I am trying to be rational and not feel negative, but this morning the reality of lung cancer sucks. It is a horrible disease and I hate what it has done to me and my life. I hope to feel better when this pain eases, but that is what I am feeling in this moment. I suppose it is okay to be human, sometimes. Sent from my SCH-I405 using Tapatalk 2
  21. Well I meant to visit here earlier today, but better late than never, as they say. It was a partly sunny, breezy 60* here in Michigan after an overnight low of 29*. Time for my fuzzy slippers to come out of the closet. Bailey was pretty sure they were new toys meant for him. I had to chase him down a couple of times to get them back. I did the Warm Water Workout this morning at the pool. It was my third time to the class and I am surprised at how well I can keep up. I may not get my toes to my butt, while jogging in place, but I did plenty of moving around and bouncing in the water. Some of the regulars in the class have started to introduce themselves. I felt welcome and not an outsider like I have a big part of my life. I guess that is so much because of my perspective and a label I put on myself. It is pretty amazing how much I have learned about myself and life since being diagnosed with lung cancer. Some of us, like me, are slow learners or so thick-headed that it takes a lot to get our attention. Lung cancer has certainly done that for me. I am not there yet, but I am headed that way! I took my youngest daughter to lunch, got my flu shot (I know my doctor will tell me to do that when I go next month) so that is done picked up a prescription and I picked up some household cleaning products at Target in Lansing. I was able to stick to my list and did NOT make a stop at the mall. I love to shop and my husband will be so pleased I maintained some self control. I bought the dogs some balls and some rawhide chews. Bailey had lost the ball in the first 10 minutes and lost 2 rawhide chews. I think I will wait until later tonight to give him anymore! Time to think about making dinner soon. Hope you all had a great day too! Susan Sent from my SCH-I405 using Tapatalk 2
  22. Diane: glad you are getting some clearing out done, too!. This weekend, I finally got my husband to help me move some larger items that I could not move myself and I can now continue my reorganizing and sorting. I am getting rid of things I no longer need, my daughters got some things they will enjoy, Goodwill will get some donations and I have found treasures I forgot I had. I still have a ways to go, but it feels good to accomplish something. On Saturday we went out to our cottage for several hours. We brought home what we could fit in the car and even fit in some small end tables this time. Financially we are going to need to sell. We have been bringing things home for the last year. We usually keep heat and water on all winter, but we are going to winterize this year to save money. I have let go emotionally of the cottage, or at least I thought I had. As we were leaving to come home I had a big surge of sadness and loss. It was brief, but I guess I am not as far along as I thought. It takes time, I suppose. I am making space in my house to bring some "cottage" feel to our home. I have always had more country antiques at home, but making room for some of my cottage items is giving me some comfort. It is sunny and a cool 53* here today. I was the only person in the excercise pool again. I am getting spoiled having so much room to get lots of movement in. When I went I went into the warm water, I could feel my cold toes tingle as they warmed up in the water. Getting ready for those snowy days when the warm water will feel super warm! Enjoy your day off Katie! There are so more days off coming during the holidays, but those won't be so relaxing! Susan Sent from my SCH-I405 using Tapatalk 2
  23. Welcome, Lysa and Congratulation on your one year since diagnosis. I am also stage 4 NSCLC adenocarcinoma and just celebrated one year survivorship August 9th. Yay! I also felt I needed to be involved in awareness and advocacy for lung cancer. I got involved on this site and have been made aware of many opportunities to do just that. I went to Hope Summit 2012 for Lung Cancer survivors last year and met over 60 other survivors. Before that I had not met anyone else with lung cancer. It was held in Arlington, VA, just outside Washington DC. There were many wonderful speakers and fellow survivors. It was a weekend I will never forget. I hope to go again in 2013 and plans are already being made for this event. Through Lung Cancer Support Community/LUNGevity I have become aware of many ways to make a difference. there are many other wonderful people here. Check out the other forums, post questions and look at the opportunities to have your voice heard. Someone here suggested I start a blog, and though I am not a professional writer it helps those who follow me on social media sites help spread the words of this lung cancer survivor. I have done things I never thought I would be able to do with lung cancer. I am sure there will be others here to offer you advice and welcome you. Again, congrats on your one year and hope for many more to come! Susan Sent from my SCH-I405 using Tapatalk 2
  24. This might be a little better picture. The tree was not lying on it's side! Sent from my SCH-I405 using Tapatalk 2
  25. Ate my lunch outdoors at a local park. It was a ltiile cool, but I was the only person sitting at a picnic table. A few others were sitting in their cars eating. These are the colors the tree I ate under was wearing. Sent from my SCH-I405 using Tapatalk 2
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