curlysue50
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Posts posted by curlysue50
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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
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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
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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
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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
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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
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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
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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
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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!
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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
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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
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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
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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
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Always Hope
in HOPE
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
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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
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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.
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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
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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
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Mostly good news on CT scan results from Monday, from my oncologist today. Lungs are looking good and still improving. My adrenal which had a tumor and last scan was "thickened" is now "unremarkable"! Left lower lobe of lung which was the worst and likely original cancer site is starting to increase in air capacity. Septal thickening( I spent the afternoon Googling medical terms) is significantly improved and thinning out. Bone mets in chest and spine are stable and no pathological fractures. Still a small amount of pleural effusion, but no gas bubbles no septations or no obvious nodules or masses.
Most of my organs are now unremarkable, (good news) with the exception of my liver. I have a fairly large lesion (low attentuation) and multiple smaller lesions. The last CT scan of my abdomen was 10/3/11 after my second round of chemo. So when they did this scan that was their baseline for comparison. So I have to go back for a scan in 2 months to see if they have grown. Freaked me out a bit. Dr told me sometimes when cancer spreads, rarely it will start to be driven by a different mutation, but not to worry too much. My cancer was growing from Oct-January and we did not have scans from March to know how many and how big lesions were then.
They I went home. Kind of scared and bummed out. I looked over my CT scan report. I always ask for a copy to take home. My largest lesion was stable from my March CT scan. It is in upper liver area and can been seen in my Chest CT scans. There were even measurements. No one said anything about "stable" in my liver at my appt. So, I emailed my oncologist and asked some questions. There IS a high probability that the lesions on liver are all stable. We just don't have the evidence to support that conclusion now because they were not all scanned in March. Whew. A bit of a reprieve. Usually cancer will follow the same pathological progression in the same organ, (but not always). So, a concern, but no alarms need to be set off at this point. I will go back in August for more definitive answers, so it is time to continue enjoying my summer! Thanks for all the support.
Susan
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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.
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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
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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
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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.
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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
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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
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!
CT Scan is good
in MEMBER UPDATES
Posted
Judy:
Such wonderful news! Congratulations! Keep taking good care of yourself. You look great in your new avatar picture. Enjoy your summer, keep cool and keep us updated on your other appts and results. You are in my thought and prayers. So happy for you.
Susan