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Janet B

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  1. Sheesh! I only have so much energy in a day and I wrote out a whole AIR and lost it!!! Any way,!! I have some energy right now, so I thought I would pop in. I miss you guys so much! I try to read the Air everyday, but then run out of energy ( and my brain is a little frazzled with thoughts and words since the WholeBrain) to write back. Today it is down to the mid 80's. A welcome relief!! I have always been one to be constantly cold, lived for summer and 90 degree weather, but my body has changed in the last few months and I seem to be living in a constant hot flash! Our house has no air conditioning, but we have fans all over! Between the heat, the medication and the effects of radiation, I am pretty much a slug all day. Unfortunately, my days and nights have gotten mixed up, I think I slept two hours total last night. My Onc and I are discussing stronger sleep drugs today. He is weaning me off the Oxicontin and Steroids also which should help to keep me more awake during the day. When there is a breeze I sit on the deck and catch the sea breeze, but there has been none the last few days. My husband took two days off and got me to the lake twice last week. It is perfect there because there are shade trees, a breeze off the water and the water is warm enough that you can float for hours. I have turned into the weird old lady at the beach though, my husband walks me to the water, settles me into the float and then holds on to me so I don't float across the lake! I love the Long Island Sound which is just down the street, but there is no shade there, so we tend to go there around dinner time. This week my sister from N.H. Is renting a cottage a few towns away that is 5 houses from the beach so I may go there once or twice. I gave in to getting a travel wheelchair to get me down the road. How are everyone's pets doing in all this heat? My bird doesn't mind it, but the poor dog and guinea pig keep looking at me pleading for me to fix it! Michelle, I lived in a town of 500 in High School and my husbands neighboring town had 200. After college we moved to Houston!!! That was culture shock the other way around from yours! Now we live in a town of about 10,000. Nice size. And, right in between NYC and Boston. Diane, I am so glad that your son and daughter in law are going to try to work things out. prayers for them. Take it easy on the volunteering driving if at all possible, you need to take care of yourself. Eric, as always your life amazes me, so active and doing so much for Lung Cancer. I would love to have been able to see Scotland some day. I have been convincing my children they should go! In my new state of lethargy I have been watching old favorites on Netflix. I started the Vicar of Dibley from Season 1 episode 1 - that show just cracks me up! Everyone stay cool, enjoy life, have Margarita for me!! Peace. Janet
  2. Hi everyone. Yes, Lillian, I am here and lurking, I am just so tired all the time that by the time I read the posts, I am too tired to type in my thoughts! Today was my last radiation treatment!! I got to ring the gong, big excitement. My hair is pretty much all gone, just little ugly wisps here and there. (Kind of a bum, because I just had it cut and highlighted!) They say the fatigue could last up to a month, by which time I hope to be on some sort of treatment, so I am not sure how much I will be enjoying this summer! The weather is perfect today, high 80s, blue sky, warm breeze - a perfect beach day, but I don't think I can get there and back by myself so I will have to lie on the deck and pretend I am there! Luckily I live close enough that I can hear the kids playing in the water, and smell the salty air. Tonight we will celebrate with lobster rolls! This weekend I have a wedding to go to in Salem MA which is just north of Boston. Since my 3 kids are all in Boston we plan to spend all day Saturday with them before heading home. It will be exhausting but well worth it! Eric, I am so sorry to hear about your troubles. I know you went above and beyond to make it work and there comes a point where you have to say enough and take care of yourself. I am hoping that everything works out and you can remain as positive and upbeat as you always seem to be. Diane, likewise, I hope all works out with your son. They are always our babies and we hate to see them hurting, I hope he is doing ok and everything works out for the best. Lillian, I can't wait to hear all about and to see pictures of your big 50's party! you have worked so hard on it - I hope everyone there appreciates all you do! I am headed out for a nap on the deck now, maybe when I wake up my husband will bring me to the beach for a little bit. I have to say, he has been wonderful. He went into major denial with this latest news and got really stubborn and kind of bad tempered for a little while, but some amazing friends got together and held a little " intervention" to talk with him gently about what I need from him and he has done a complete 360, turned out there is an amazing caregiver in there, We just had to coax him out! It really helps also that he works a mile from home and it is his company so he has no one to answer to if I need him in the middle of the day - we are blessed that way. peace everyone - be happy, enjoy the beauty of the day!! Janet
  3. This is Sean. He is no longer my "baby", as he just had his 13th birthday. He is, however, the best care giver. Ever. He never leaves my side, comforts me when I feel bad and gives me endless sloppy kisses.
  4. Well, it is raining again! It rained all morning, and then as soon as radiation was over, the sun came out, but I of course, fell asleep! I slept from 1-5 and now it is pouring again!! I do think this is an unusual June, usually I have been at the beach and am nicely toasted by now. Hopefully tomorrow I will make it there, at least for a little while, even if I sleep while I am there! I am sorry to worry you about the trumpet vines Diane, my mother in law's house was covered with them and I always loved them, but was warned not to have them around children. They are so beautiful though! My garden is coming slowly but surely, it has been a work in progress for many years now, with hurricanes periodically setting us back to the beginning! The store that delivers is, unfortunately the big chain around here. Our little local store is about the size of my living room, and although the meat is amazing, it is a bit too pricey to shop there for everything! It is a nice service though, I go right on line, order what I want and then it just shows up. I am on steroids now too, so having all this food in the house is dangerous! I just finished off another Klondike bar! I have two weddings to go to in the next month, I have small sized outfits to wear to each, I hope I don't blow it! Lily, as always I marvel at your busy life here and on Face Book! I can't wait to see pictures of the fifties party! I missed the fifties, being born in 59, but was always intrigued by the time. Your complex is so lucky to have you there! I can't believe how much hotter it is there than here, we haven't gotten up to 80 yet, I don't think?! Be careful with all your walking, hydrate, hydrate, hydrate! And Diane - driving with one eye shut is never a good idea, get yourself to the eye doctor!! It was another slow day here, thanks to radiation, hope you all did something fun and enjoyed your day to the fullest!! Peace, Janet
  5. Janet B

    Monday Air

    It rained all day today. The weatherman says it will rain until Saturday. This is crazy, it is mid June and I have only made it to the beach twice!!! I NEED sun!! Well, nothing to do today in the rain, so I spent the day eating all the food that was delivered by the grocery store yesterday! At this rate the truck will have to come every other day! It must be the steroids, I just keep eating and eating!! The grocery delivery went so smoothly. Next week will be even easier, now that we know what we are doing and it was so nice this morning to already know what was for dinner and to know that Charlie didn't have to run out to buy something. (Of course we chose barbecued chicken and now it is pouring out side!) Today, of course, was another radiation day. I have been having friends taking turns to drive me in and it has been a very nice "visiting" time with them. They get to ask me questions about this disease and about my faith, which I hope puts them more at ease and which I know helps me to talk about it. I also went to speak to our pastor about all of this today. Our Pastor of many many years retired in February, so now when I really need someone I feel close to we have an interim Pastor. I like him very much, but he is an ex bishop and very much set in his ideas. He turned down some of my memorial service ideas, which leaves me some things to think about. I am not afraid to put my foot down about the important pieces even if it means not having my memorial in the church. I am glad we talked though, it gave me things to ponder! Diane, Barker is learning new tunes, but they seem to be made up! He sings them with such joy and gusto though, he cracks me up!! He loved my brother, I think he might be a "man's" bird. Still haven't gotten him to come out though, he likes his nice safe cage! I am so glad your dog didn't get sick on the Trumpet Vine, I was always told that they were very poisonous. I always wanted some, but was afraid to plant them. Our neighbor got an Aussie mix a couple of months ago. He is so cute, he comes over and waits at the door for my old Golden to come out to play, but poor old Sean just can't keep up with him! Last night some friends had us over for a beautiful picnic dinner by their pond. It turned out to be a little intervention with a group of friends, for my husband who is not coping at all with this latest news and keeps refusing any kind of kind offers of help. I am blessed to have such good friends who cared and stepped in and helped out in such a kind and gentle way. I really think they helped him move forward a little bit. At least by the end of the night I had people planning days to clean and vacuum and do little errands without him getting all upset. Again, I am blessed. We would love to hear from some of you others out there, I hope your week started out great and if not - that tomorrow is better!! Peace, Janet
  6. It was a beautiful day here today after buckets of rain yesterday. When I say buckets I am not kidding, I woke up to my backyard flooded and a Mallard pair swimming around in the "new pond" ! My brother came for a visit last night until this afternoon. I was wonderful to see him, he lives about 5 hours away, but we usually only see him once a year at Christmas. I must be really sick if the family is descending!! We just sat and talked until about 11:00 and were up by 7 talking some more, Then my sister and her husband stopped by for lunch, it was a wonderful day. I find that with the new radiation and drugs, I desperately need a nap by three, so I laid down as soon as everyone left and slept soundly until the phone rang at 6:30! Unfortunately, 3-6 is prime beach time, so I am going to have to work out a new schedule! Diane, shopping is an issue here too! My husband always messes up something, changes the order more to his liking, etc. Just now I did my first "peapod" order. The grocery store here has an online shopping app. I went on, chose what I wanted and picked a delivery time and VOILA, tomorrow between 3-5 my groceries will show up, I will let you know how it goes! people tell me they do a very good job and even give you the "first pick" of fruits and veggies. I did push the wrong button and lost my whole order half way through and had to start over, which was frustrating, but it will be nice to have some food in the house as my husband only buys one meal at a time. I am so glad the graduation went well, parking and wheelchair all worked out? And yes, they do preschool graduations, kindergarten graduations and middle school graduations now, it has gotten a bit crazy! But I do agree, Kids do seem a lot more mature and "able" than we did at the same age! I loved the end of the school year the best, even though the kids were home, life was less hectic without the homework and sports and all. Of course I didn't work during the summer either, so maybe that is not fair of me to say! be well everyone - peace janet
  7. The weather here is beautiful here this week, high 60's low 70's with blue sky's and a warm breeze. The kind of day you just want to sit outside with a cold drink and do nothing! My sister game from New Hampshie to give me rides to the Cancer Center today and tomorrow and she weeded and mulched my whole front garden. It looks a thousand times better as I had done nothing with the gardens this year. Tomorrow she will do the backyard. That is a huge relief off my mind. I have started setting up a "Janet needs help" page through my church, and weeding will definitely be on there! (So will a "ride to and company at the beach" ! Important stuff! I am feeling much better Katie! Thanks and thank you for putting it up on the Facebook page, I have read e reesponses and have been very moved by them, as I am moved by all the stuff that happens through LUNGevity and Hope Summit! I think we have the dosing right now between the OxiContin and steroids and the radiation should help too. So I am feeling worlds better than last week. just trying to do alot (probably too much) before the radiation fatigue sets in! No big plans for this week, with radiation an hour from home right at noon it kind of puts a crimp in other activities! Diane, you should definitely get that wheel chair! Plus you should call the school and ask about handicapped parking. My sons school had handicapped parking that you didn't need a tag for, they just took you for you word that you needed it. Play that "cancer card!". Hope everyone else is out having fun! Peace, Janet
  8. I agree, Thanks so much Diane for keeping the air open! I have been missing for a while, I am so sorry. My pain had gotten so bad that I had a hard time concentrating on anything much. I am now on good doses of OxyContin and pain free. I posted an update under "test time/ updates". For here I will just say that the trial is off and new treatment has started. It has rained all morning but the sun is trying very hard to break through now. I had plans to sit at the beach with a dear friend, I am remaining hopeful that that will happen before sunset! My garden is very happy for the rain though! Diane, I have been a garden supervisor this year also. I was so sick that I had never planted my plants from Mother's Day! My daughter came home this weekend and between the two of us we got them all in the ground, I am not sure how many will make it though! The gardens have not been weeded at all though and my kids and husband do not know a weed from a plant so they are useless there! My sister is coming tomorrow to get it all caught up for me. My bird is still not tame, but he is very very funny! He is learning the theme song to Indiana Jones. His pick, not ours! We have been trying daily to get him to sing other songs, but he heard Indiana Jones one time and fell in love! I think he will have it down pat by the end of the week! I am glad you gave in to the kennel Michele! I had a hard time doing it too, but it was the only thing that worked and my dog seemed to like it, he would go in there on his own when he was tired. Have a wonderful rest of your Monday everyone!! Peace Janet
  9. Diane - Keep on trying with the crochet! Not if it frustrates you too much, but if you get the hang of it, it can be very relaxing and an easy take along project for waiting rooms and car trips! As far as having a project room, I am a little jealous! I also have boxes of photos that need to be organized and labeled but by the time I get them halfway sorted on the Dining room table, I have to use the table and they all get jumbled again! I like your friend's idea to eat all the foods she hasn't tried. I suggested to Charlie that we should try every restaurant in our town that we haven't been to. It is a small town, but on the shoreline, so a vacation spot - we have a crazy amount of restaurants! Today is a picture perfect day her in CT. They promised mostly cloudy and rainy and the sky couldn't be any bluer and it is 80 degrees. I started out the day throwing up, a lovely side effect of this trial drug. Then I headed to the nursery to buy more plants (I don't want to even think about how much money I have spent there this spring!). Halfway through my shopping I had to call my husband to come get me because I was just to weak. I came home, had something to eat and took a nap, now I am headed out to plant my new flowers. Tomorrow I have a 10 hour day at the cancer center, the second month of my cycle on the trial drug, which means blood tests and EKG's all day. Since I have to be there at 7 am, I am going to my sisters for the night - she only lives a few miles a way from the hospital. I still have to plant, shower and pack - oh my! I better get moving! Have a wonderful day! Peace, Janet
  10. I used to play Pokeno with my Nanny when I was little, brings back good memories! I just came in from gardening, I have to start all over this year, Hurricane Sandy killed just about everything. My garden was almost all perrenials,but after two hurricanes in two years, I am sticking with the cheaper annuals this year! I do lots of pots on the deck also. We rearranged our deck furniture to get the table farther away from our neighbors massive out door kitchen! It has been the same way for so many years, it is kind of nice to change it up. I am also planting serval deck railing pots to kind of act as a screen! now it is getting chilly, so I will stop for the day. My day started off badly, the pain was so bad I didn't sleep at all and couldn't get comfortable or even think. My Onc called in a prescription for Percocet - wow, what a difference!! I am fuzzy and typing this is taking an extraordinary amount of time, but for the first time in days I am pain free! My sister stopped by this afternoon with a pound of shrimp which we ate very quickley! I haven't seen her in a few weeks and it was nice to get caught up. Today was my first real day out side in the sunshine, it makes me feel alive again, it was a long hard winter - here's to an amazingly wonderful summer!! Peace, Janet
  11. Good afternoon friends!! It is gorgeous day here in CT. I hope it is the same where you are. I was so glad to hear that Katie was safe from the tornados, does anyone know about our other Texas members? I am going to take advantage of the stone cutters next door taking a lunch break and go outside and do some gardening. Then off to the store for some sandals. I have put off buying new sandals and bathing suits for years because "I was dying so why waste the money". Well now there is no choice, my suits don't fit and my sandals fell apart! After that I have a coffee date with my good friend. This weekend's plans include Lots of yard work, cleaning the deck, a big tag sale and helping out at church. We have begun a woodland memorial garden there (I take all the credit, it was my constant pestering that got them moving on it!). it is in the very beginning stages, plans drawn up, path laid out, permits taken care of. Sunday is a "pick up sticks picnic". My bone pain is much better than yesterday. yesterday I would have given my self a 7 on the pain scale, today a 2! I think maybe sleeping all day and all night helped! My bird is screaming for my attention - hope you all have amazing days!! Peace Janet
  12. Good afternoon friends!! It is gorgeous day here in CT. I hope it is the same where you are. I was so glad to hear that Katie was safe from the tornados, does anyone know about our other Texas members? I am going to take advantage of the stone cutters next door taking a lunch break and go outside and do some gardening. Then off to the store for some sandals. I have put off buying new sandals and bathing suits for years because "I was dying so why waste the money". Well now there is no choice, my suits don't fit and my sandals fell apart! After that I have a coffee date with my good friend. This weekend's plans include Lots of yard work, cleaning the deck, a big tag sale and helping out at church. We have begun a woodland memorial garden there (I take all the credit, it was my constant pestering that got them moving on it!). it is in the very beginning stages, plans drawn up, path laid out, permits taken care of. Sunday is a "pick up sticks picnic". My bone pain is much better than yesterday. yesterday I would have given my self a 7 on the pain scale, today a 2! I think maybe sleeping all day and all night helped! My bird is screaming for my attention - hope you all have amazing days!! Peace Janet
  13. I want to welcome you also, you have found a good place to find support, encouragement, and hope! I was diagnosed at 48 with NSC adenocarcinoma (ask your Onc what type of non- small cell you have). My doctor gave me a few months, that was 6 1/2 years ago. So, never listen to time lines! Working in your garden without oxygen is a great thing! Since you have already experienced dehydration, you know the importance of drinking water, lots and lots of water. I really don't like water, so I make weak ice tea, or add orange or lemon to it, and drink sparkling water. Read through all forums here. you may find answers to some of your questions, if not, ask us, someone will be able to help! keep hugging that two year old, that is the best medicine!!! Peace Janet
  14. OMG!!! I am so glad you are okay Diane, we have all been so worried!! We all understand the disappearing from the forum and Facebook for a while because of depression, been there, but just so happy to hear from you!! I hope things are starting to get better. I am so glad you started crochet! Once you get the hang of it is such a relaxing, meditative thing to do. I also understand the bathroom remodel, It has been months and months and he still hasn't put up the baseboard!! My bird is doing well! He sits on my finger , inside the cage, and is very friendly, again, inside the cage! He is a little bit frightful about the big world outside of his cage! Do any of you know the poem Belinda's Dragon? Belinda had a "realio, trulio little pet dragon" named Custard who always cried for his "nice safe cage!" I am so sorry that I have been missing for a few days. My son visited and as soon as he left my daughter came. I guess I was really pushing my self to be "normal". Because as soon as she left today I fell sound asleep and slept the whole day away! I haven't been feeling so well lately, very bad bone pain and nausea. the nausea is definitely do to the trial drug, we are not sure about the bone pain, hoping it is the drug and not new growth, but it has been a bit debilitating . I haven't gone to the farm all week, and actually told them not to expect me for a while. My doctor is supposed to be calling in a prescription for a stronger pain killer, of course that will probably take away my ability to drive - sheesh! My neighbor has been building a monstrous stone patio for two weeks, so I have had two weeks of waking at 8:00 to stone being cut, which continues until 5:30 each night. On top of that he seems to have encroached on our property and my husband has refused to go speak to him about it. So, now I am angry at my neighbor and my husband! I can't believe that a man that owns his own engineering company is afraid to talk with his neighbor about property lines. Another sheesh! hope everyone is well! Peace Janet
  15. Lillian you are with your Giants like I am with the the Red Sox! Unfortunately, my Sox are going through a rough patch! it is a beautiful sunny day here but still chilly - I have on a long sleeve shirt, a sweatshirt and a fleece jacket! It is my morning to go to the farm, but this trial drug is throwing me for a loop. I was up most of the night with terrible pain in my bones (I can relate to your pain Lillian!), a massive headache and then got up and threw up. Fun! So, I drove the half hour to the farm to give them the next two weeks of crafts I had put together, made sure they had someone to cover for me and told them that I could no longer be a reliable volunteer. It made me sad, especially because it was such a beautiful day and the baby horses were romping about. I am hoping that if I don't do the preschool program there anymore, I will be up to going and just enjoying the animals and peacefulness of the farm everyonce in a while. My daughter (middle) is home for a couple of days. I think we will just cuddle some, maybe garden a little. Oh, and she wants me to teach her how to make bread. She has big shopping plans, but I am not up to that. She just finished her 3rd year of medical school, so I am constantly asking her medical questions! She owes me the free advice right?! I am very worried about Diane, she hasn't been on the site since April 20th and not on Facebook since March. Prayers that she is ok. have a good day everyone! Peace Janet
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