Janet B
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Posts posted by Janet B
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I miss the air, the way it was when multiple people came on a day. When we knew about each others live's and made lasting friendships. Do you think it's time has past?
Mary, I haven't tried the Ensure yet, I did drink chocolate Boost when I was going through chemo and did find it much better when I got it really cold, It never dawned on me to add extra chocolate!
As for Hope Summit, last year my husband did just what your husband has planned. He spent the days exploring D.C. And I think he really enjoyed doing it alone, at his own pace. As far as free time at the Summit, there isn't much!! Some people went out together after the night activities, and I recall that there were a couple of hours on Saturday between the sessions and dinner, but I used it to take a nap! Katie would be the one to get an idea of this years schedule. I WILL say it was wonderful! It was just so nice to meet and talk with so many people who understood. The age range was from 24 to, I think 80's. We all chatted, learned And laughed together. we ate well, and bowled poorly! I can't wait to go back.
In a minute I am headed out to Long Island for a memorial service for my Uncle who passed away before Christmas. It will be an interesting trip, my two sisters and I and all three husbands are going together in one minivan. Lets see if we still like each other by 7:00 tonight!!
Snowed again last night, and supposed to snow a little all day, life in New England! Some school districts in the state haven't been to school in a week!
Today my daughter is taking the first of her medical boards. She is a nervous wreck (I am confident she will do fine). prayers though are welcome! She will make an awesome doctor!
Have a wonderful Saturday everyone!
Janet
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Happy Valentine's Day everyone!
I hear my husband has ordered two lobsters for dinner tonight, yum!
We got more snow last night! Only a few inches, so not much harm, just enough to cover up the dirty stuff on the sides of the road and make the world beautiful again. I am headed out in it in a few minutes, I have to buy some pants. I have a memorial service to go to on Saturday and I have lost so much weight from the chemo, I have no clothes that fit me, especially not nice clothes. The weird thing is that dieting is so stuck in my mind, from years of being overweight that I still feel really guilty when ever I eat something like ice cream or chips, hard to get my head around the fact that I should be gaining weight instead of losing it!
I had my infusion on Tuesday, my oncologist and I spent sometime discussing our next plan of action, I will see him again next week after my CT scan and we will come to a decision. Whatever we decide I refuse to let the treatment make me too sick to go to Hope Summit!
I hope you are all having a good week, it has been very quiet here, maybe that means everyone is busy doing happy things?
Peace
janet
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As a patient, I can remember very well that feeling of total gloom that overtook me when I was first diagnosed. How could one NOT be depressed when they hear this news? Give your mom some time. Spend time with her if you can, you don't have to talk, just be there for her. Find things for her to do to keep her mind busy, I went crazy crocheting, did a million suduko puzzles and sorted through all my family photos, anything to not think about the cancer. Once treatment does start, she will start to feel a bit more hopeful and more in control. Hopefully her doctor can gently describe her different options for antidepressants, and ease her mind about taking something.
Keep us posted about her appointment, how it went, what the plan is, what treatment is being planned. Come here often for yourself and, very important, take care of yourself.
Peace, Janet
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Thought I would poke my head out of the snow and say good morning!
We seem to have survived the blizzard here in CT. It is hard to tell how much snow fell because the wind was so strong there are huge drifts. We live on the shore so we don't usually get much, but I think we got between 18-24 inches. It was blown up against the front door to about three feet! Oh, and I can just make out my VW bug! I know it is under there somewhere! Thankfully we have heat and power, so I think I will just hunker in and enjoy the beauty of it all!
We live on a private road, so we don't get plowed out, we will be here a while!
Hope you are all having peaceful weekend.
Janet
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hi everyone!
I have been missing from the air for about a week. We can blame the "great bathroom fiasco of 2013". In case you don't remember - the toilet broke, needed to buy a new one. While pulling out the old one, realized we hadn't painted behind it, had to get new paint. New toilet and new paint in a room with 24 year old linoleum? New tile purchase. Pulling out the vanity to install tile caused damage, new vanity. Aw heck, might as well get new light fixtures! Anyway, none of this was planned and my husband is a very slow worker, so the house is in a state of total chaos. My job in all of this, is shopping for the items and painting the bathroom and that will explain my absence! I still don't have my energy level back up to par, so I paint a little, nap a little, paint a little, shop a little, nap a lot! I JUST finished! Now to wait for my husband to do his part! Not a lot of confidence there, he built this house 24 years ago and he still hadn't finished putting in the baseboard in this bathroom!
Right now we are having a kind of major blizzard. I bought all the food for the weekend, and plan to just hunker in. Unfortunately my son was supposed to come home this weekend but all the trains, planes and buses have been cancelled, and they just closed the highway. I really miss my kids and was excited to have him here.
Eric, I am sorry to hear about your friend. I will say a prayer for a successful surgery.
As for King Richard, of course we know about the discovery! For a country that was founded on escaping the British Monarchy, we are very enamored with it! Kind of odd to think of a King buried under a parking lot.
Lillian, I hope you are feeling better and the pain is easing up. I have to tell you that I am in awe of you, even in pain, you do so much more in one day then I could ever hope to!
I will try to be better about stopping by. I need to just make it part of my morning routine!
Peace!
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Welcome to the site, I know you wish you didn't have to be here, but I am so glad you found us! This is a wonderful place to come with questions, to vent and to make new friends who understand what you are going through.
I also have the EGFR mutation. I have been on Tarceva since February of 2007, starting with 150mg and going down to 100mg after a couple of years. There have been some ups and downs, but here I am 6 years later!
If your dad has any side effects that are bothersome, let us know, there are enough people here who have been on Tarceva and who will have good suggestions for dealing with the side effects. If your cancer center has a dermatologist be sure to have your dad visit him or her if he is having bad rash issues. I also had ringing in the ear, and even hearing loss. It has been resolved, not really sure how, but I think maybe the antibiotics I was on for the rash did the trick!
Take care of yourself, keep us posted on your dad, peace and strength to you both
Janet
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We all deserve worry days! I am right there with you. Unfortunately my husband seems untrainable! The best I can do is warn my daughters to train their husbands to help with the housework young! As Michelle says, my husband just doesn't "see it". He would never notice dog hair on the floor, a dirty bathroom, smelly sheets or cobwebs! (To give him some benefit of the doubt, neither did his mother
!). if I ask, he will do it. Once. Then he has to be asked again. I feel like a nag, I get angry at him for not caring, I stress out, and then I remember, he just doesn't "see it" and he doesnt see the importance of it. He SHOULD, I know, but he doesn't, I know it is not because he doesn't care and I don't want this time to be an angry time, so I have let go of my standards a bit. I DO know that when I get too sick to do anything, we will just have to hire someone, because being sick in a dirty house is just depressing! Sorry that I had no words of advice, but wanted to let you know that you are not alone! -
Good afternoon!
I spent the morning at the farm. The temperature was 13 with a windchill of -2. Still, every child and then some showed up! We brought the animals in to the kids instead of the kids out to the animals again! It makes for a crazy morning, I will be happy when temperatures get a bit warmer next week.
After the farm I met some friends for lunch. It was nice to see them and chat, I had put off his lunch off for a few weeks because of my stamina (remember our "air" conversation about declining invites?!). However, I really should have put it off again today. It is just too much for me to do anything else on Farm days. Halfway through lunch I started crashing, and now I am home ready for bed.
Diane, Lincoln was wonderful! Enjoy! And have a wonderful time at your grandson's birthday, what a blessing!
Our big weekend plans are to buy a new toilet!! WHOO HOO! (Our guest bathroom toilet died the other day). I am hoping that I can convince my husband that as long as we are getting a toilet we might as well get a new floor covering too! This bathroom has the same floor and fixtures we put in 24 years ago and survived through 3 kids from toddlers to adults, it deserves a little makeover!
Hope you all have a wonderful weekend!
Peace
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Good afternoon! We are warm compared to you Michelle, it is 17 here! Needless to say I am not venturing outside! This new skinny chemo body of mine feels the cold even worse than it did before! Crazy, but they are saying it will be 50 next week.
I am jealous of the new style you are going for Michelle! The Tarceva really wrecked my hair, it is coarse and kinky it sticks straight up and refuses to grow AND I have several bald spots. It is lovely! Ha ha! I just can't bring myself to getting a wig, it seems like it would be so uncomfortable, like wearing a hat all the time. So, I just go for the crazy lady look!
I am making soup for dinner also, chicken tarragon. I really really don't like soup but my husband loves it and we had a roast chicken the other night, so I will grin and bear it! There IS icecream for dessert!
I am headed back up to the guest room to continue purging my craft supplies. I used to do a lot of felting, folk art painting and stamping to sell and give as gifts, but I really kind of stopped when I was diagnosed so I think it is time to clean out most of it. It is hard to do though. A crafter always has in the back of her head that she could use that some day!
Stay warm everyone!
Peace
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You are not losing your marbles Diane! I think Michelle and I must have started the air at the exact same time! I don't know how to put the two together, and since the day is almost over...
I got side tracked in the organizing, now I am daydreaming and going through the ikea catalogue looking for closet organizing ideas!
Pinterest is like an on line bulletin board. If you see things you like on line you "pin them". You can have your own page with a bulletin board of ideas for different categories (I have a food board, garden board,craft board etc.). And/or you can just go on and look through other people's boards or just search for what you are interested, ie. recipes. Talk about getting sidetracked, you can really lose yourself for hours there!!
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Ok, so today I refuse to even open the door! It is COLD! I know it is winter, cold is what we get, but today I choose to avoid it as best as possible!
Diane, I understand how you feel about putting friends off, I just finally went out for a drink with a friend who had been asking since Thanksgiving. I just wasn't feeling up to it. The thing is , we put those feelings on ourselves somewhat. Our true friends are not going to give up on us because we are not feeling well. Just go when you are up to it, in the meantime, no guilt! Hard to do, I know.
As for Downton Abbey, OMG watch it! I started watching it last Sunday, season 1 episode 1 and I have manage to, in one week, watch all of seasons 1 & 2 and the 3 episodes of season 3! Needless to say nothing much got done around the house but,I shall practice what I preach, no guilt! It is such a great show!
Michelle, so glad your computer was fixed so quickley! It is almost scarey how dependent we have gotten on them, but I am totally lost when I am cut off from the Internet!
Today I am starting a rampage of the house. I am having one of those - "when I die I don't want anyone to see all this stuff" moods. So I am going through my yarn stashes, craft drawers, and closets and attempting to downsize. I think I should just pick one spot a day, since now my guest room looks like a crime scene from me throwing stuff about! I dream of nice empty closets and organized spaces, but who am I kidding?! Ha ha! ( I don't think I have ever thrown away a half used skein of yarn!)
Well I better get back to the mess, I hope you are all doing well today. Stay warm!
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happy Tuesday everyone!
It is a cold one today. 23 degrees now, with a wind chill of 9. When I left this morning for the farm, my car was covered with snow and ice and it was so bitter I considered crawling back into my bed! After all, I thought, how many preschoolers were going to show up at the farm in this bitter cold? They ALL showed up! It was way too cold to take them on the farm tour, so we brought several of the animals in to the classroom space. The kids thought having a goat inside was pretty cool!
Then I came home and decided to clean. I opened the toilet tank to drop in a cleaning tablet and the whole inside mechanism fell apart and water went shooting all about the room and all over me. COLD water. I was so shocked it took me several seconds to turn off the water. I was soaked and the bathroom was too. That was the end of cleaning! I have my pajamas on at 2 in the afternoon, eating a yummy snack and calling it a day!
Hope you are all warm and dry and having a good day!
Peace
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Good afternoon everyone! I just got in from my MRI, it was a long one! I treated myself to a chocolate croissant afterwards! On my way home I bought a new pocket planner. I remember when I bought the last one, it was a two year planner and I told my oncologist that he had to keep me alive two years because of it! Well, I bought another two year one!
Eric, you are getting so famous! And more importantly you are such an amazing spokesperson for lung cancer. Thank you for all you do. I am so sorry about the loss of your friend.
Michelle, can you post a picture of Sampson here? I would love to see him!
Diane, I am blessed to live so close to Yale, the croissants are just the icing on the cake! I would love to have you move to CT, I bet we would have fun together! My son was just out your way, he went to Seattle and Portland. He couldn't get over how friendly everyone was there.
Well, the hospital always exhausts me, so I am going to curl up with a snack and my crocheting and ignore the dog hair that needs to be swept up and the dishes that need to be done. Oh, and I just started watching Downton Abbey on Hulu. I know it is season three, I am a little late, but I started with the first episode, I am on episode 5 and I am hooked! Sounds like a perfect way to spend the afternoon!
peace everyone!!
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Jocelyn - I have an onco-dermatologist at my cancer center who recommends Cetaphil also, so that is what I use. It has made a big difference, my skin is still flaky (embarrassing when trying on dark clothes in a store!)., but so much better. She has me using Dove products in my hair as my scalp was quite bad for some time.
I have just accepted the diarrhea as the "new norm". I do take Imodium if I am going to be out and about.
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Good morning everyone! I am sorry I have been missing in action, having a hard time getting my self back to a routine...The chemo effects were just winding down when the holidays hit and the company came and...Anyway, I think I am getting my energy back more to normal now!
It is cold, 36 and very grey again. We got snow over night, only a couple of inches, which is melting, but ice on top so there were a lot of delayed openings. I have mentioned before that I hate being cold, but at least when the ground is covered with the beautiful white stuff, I can appreciate the beauty of winter.
I have to go over to my church in a bit to do some folding and mailing, then to a friends for a coffee date. I am trying to figure out something warm and cozy for dinner, but the cupboard is bare and I think between folding and visiting I will be too tired to make it to the grocery store also. I wish I was more organized and always had staples in the house to make a full meal!
Lily, you must be almost ready to head home. I know that feeling, you love where you are, but the thought of your own home, your own bed and bathroom are just so comforting! Safe travels!
Had scans last week, infusion yesterday, and back for more scans tomorrow. Sometimes it feels like I live at the hospital!! Luckily they have the BEST chocolate croissants in the coffee shop there!
Peace
Janet
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I LOVE your story, thank you so much for sharing it! It sounds like you have found the way to get past the darkness of this disease and find the blessings in life. Congratulations on your 5 year anniversary!!! What hope that gives so many others!
I am also on Tarceva, I have been on it for 5 years, we could share some war stories, I am sure!
Peace
Janet
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Sorry I am late in welcoming you Mary! I am so glad you found us...but not that you had to
I am glad that you looked around the site a bit already, there are lots of stories of hope, and lots of people that have been through some of the same stuff as you, it is so helpful to see that you are not alone in what you are going through and how you are feeling.
Stop by often, with questions or your latest news!
Peace
Janet
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Good afternoon everyone!
Michelle, I agree, you should get GPS. I am not a city girl at all. I live in a town of 10,000 now and that is way too big for me! But, I have been asking for a GPS for when I visit my kids in Boston. Sometimes I get lost there for hours with all the crazy one way and wicked curvy roads! it is important that you feel you can get out, shop, see people, especially in the winter when the world feels isolating enough.
Today the sun is shining here, a welcome after a week of cold and grey. I know I live in New England, but I really really hate to be cold. I can put up with winter ok as long as there is beautiful snow all around, but just cold and grey, not so much!
I started back up at the farm Tuesday for the first time since July and all the chemo. It was exhausting and I have barely left the couch since, but it was so worth it!! I missed the kids and animals!
Scans tomorrow.
Peace!
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I just wanted to welcome you also. I am so glad you found us!
I was diagnosed with stage 4 when I was 47. I am going to be 54 like your mom next month - that is 6 years living with lung cancer! I am assuming you are close to the age of my children. I remember clearly the fright, tears, and anger in their eyes. I worried they would never be able to get past it, but they have and you will too. I am not saying they are ok with the fact that I have cancer, not at all, but they are not letting it define their lives or mine anymore. It is a PART of our lives, it is by no means the BIGGEST part of our lives.
Once your mom has the biopsy results and has a plan for treatment you will both start to process the information more clearly and will have less a sense of being lost and more a sense that you have a plan and a way to fight.
Like the others have told you, read the good news forum, read the My Story forum, come here often with your questions and please let us know how things are going.
Peace
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I just wanted to say welcome too. I am so glad you found this site, as you can see, there are a lot of good people here with lots of experience.
I wanted to also let you know that I was your father's age (47) when I was diagnosed. The only symptoms I had was bad pain in my lower back, and lower abdomen also. I never had shortness of breath or a cough. At first we thought it was Kidney stones, then a herniated disc. When the pain got too bad, I had a CT scan and MRI and just like your family, our life halted. I had a very small tumor in my lung, tiny. But also 3 in my spine and one in my brain. At the time of diagnosis I was given less than a year to live, that was 6 years ago. I realize that I am one of the "lucky" ones, but, there is hope, there is always hope, and everyday new research is being done.
My story - viewtopic.php?f=47&t=46162
keep coming here for questions, answers, and support. Prayers to you and your family -
Peace
Janet
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Today marks the 6 year anniversary of my diagnosis.
6 years ago today I was told I was seeing my last Christmas.
6 years ago today I went home from the hospital, googled lung cancer and my whole world went black.
6 years ago today, I sat in my dark bedroom and cried.
Today, I shopped, baked, vacuumed, and am headed out to a party.
God bless my doctors, God bless Lungevity.
It has been a rough year health wise, but it has been a year!
Merry Christmas and Peace to you all!
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Good afternoon!
Diane, I am with you, I like a good rain storm everyonce in a while. It is a good excuse to snuggle up with some yarn, a book, a hot beverage or to really clean the house! But a whole winter of grey drizzle sounds so depressing. I hate to be cold, so I have a hard time with winter, the only thing that makes it bearable is the beautiful white snow. (We don't get much of that here on the shoreline either)
So - I did get my infusion the other day, but it was not chemo. My doctor stopped my chemo back in October because it was pretty much keeping me in bed through the whole cycle and we couldn't get my blood counts to stay at a healthy level. The chemo did help and everything is stable. Right now I am still on Tarceva and I get an infusion of Avastin every 3 weeks. Scans in January to see if I am still stable and go from there.
I have no children or company this weekend. Today I am finally cleaning up from Thanksgiving. I am putting away the Fall decorations and doing a good cleaning before the Christmas decorations go up. Usually I start the Christmas decorating on December 1 but my daughter asked me to wait until she got back on Monday so that gives me a couple days to get everything cleaned first. We will probably go chop down our tree next weekend. Knowing our usual luck we can count on it being 10 degrees out and sleeting!
Tonight our town has it's annual "Saybrook Stroll". All the shops on Main Street stay open late, Main Street and the shops super decorate, they offer free cocoa, hot cider, cookies, etc, there is caroling and hayrides and Santa. It is a very well attended event and a very nice way to promote shopping in town.
I hope you all have wondrous things planned for your weekend!
Peace
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Good morning!
To add my two cents to yesterday's discussion. I really, really don't like soup. Never have. People always look at me like I am two headed when I say that!
I did manage to get my infusion on Monday, scheduled for 12 but by the time we got the clearance it was 3:30! It seems there is too much protein in my urine, so now I have to do a 24 hour urine test, oh what fun lung cancer is!! I met some really nice people while waiting, so all in all it wasn't a bad day!
Yesterday I tried to Christmas shop, but my energy level is working against me. I only succeeded in getting the Christmas crackers (the paper tubes you pull apart and get a prize, fortune and crown inside), the Christmas cards and a couple of stocking stuffers. I was out and about for about 3 hours and today my body is refusing to move. This is going to be a slow process! I think I need to space the shopping trips at least a couple of days apart! I already told my family I will make it through all the holidays but starting January 2nd I plan on staying in my pajamas on the couch for a month!
Today I am going to lay low, make my kids their advent calendars (yes, they are adults, but they are set on tradition!) and maybe, but probably not, straighten up the house a bit. it is cold and grey again, winter is here.
have a wonderful day everyone - peace
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Well, they said we would have snow today but it is only 37 and raining. I am on the shoreline though, so we tend to get rain more than snow, I am sure other parts of the state are getting it.
I am sitting here in my lovely heated infusion chair waiting for my medicine. There seems to be a problem with my protein level, so they are testing and re testing to decide whether I will even get my infusion today. Wish me luck! The hospital is crazy busy today, parking garage was full, my doctor was running over an hour behind schedule, waiting room was crowded, no seats in the cafeteria. Must be the holidays! The thought of having to do this all over tomorrow if my Doc says no today is disheartening!
Last night the Thoracic Oncology department put on a symposium for Lung Cancer Awareness month. It was well attended and so encouraging to hear about all the studies being done and all the treatments on the horizon. My Oncologist spoke about Immunotherapies and he had all these great, easy to understand graphics that made it not only understandable but fun. Oh, and the food was great!
I tried cyber shopping yesterday. I did do a little, the deals weren't there, except free shipping, but at least I got some things and didn't have to pay for gas or even get out of my pajamas! I was frustrated with the Gap though. They had 30% off and I wanted to buy my son shirts, but they only had about four shirts still available and they were in small and extra large. Everything else was "sold out".. miraculously, today they have every shirt they carry available. What a crock! I have done a little more shopping today, sitting in this infusion chair. Tomorrow I think I will try shopping in the "real world".
Eric's description of a Pantomine make them sound like a lot of fun, and kind of similar to a midnight showing of Rocky Horror Picture Show! Some how I just assumed Pantomimes were silent!
I hope you are all having good days.
Peace
!). if I ask, he will do it. Once. Then he has to be asked again. I feel like a nag, I get angry at him for not caring, I stress out, and then I remember, he just doesn't "see it" and he doesnt see the importance of it. He SHOULD, I know, but he doesn't, I know it is not because he doesn't care and I don't want this time to be an angry time, so I have let go of my standards a bit. I DO know that when I get too sick to do anything, we will just have to hire someone, because being sick in a dirty house is just depressing! Sorry that I had no words of advice, but wanted to let you know that you are not alone!
An update & a few questions!
in GENERAL
Posted
Oh no! I am so sorry your dad had trouble with his port! That was not someone he needed with everything else he is going through! I have had a port for two years now, having one when going through chemo is pretty common. I have had no trouble with mine, and in fact, I actually love it. My veins were very hard to access and every time I needed blood work, chemo, hydration etc done it was an ordeal, The port makes it so easy. The nurses DO spend a lot of time sterilizing the area before and after they access it.
Now the thing is to figure out something to keep him from being bored silly! Is there a hobby he could get into? A simple home project? I built a dollhouse, organized all the household files, cleaned the attic etc... All a little bit at a time as energy level allowed.
Keep in touch, let us know how he is doing and what the scans show - prayers are with you -
Peace - Janet