Janet B
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Posts posted by Janet B
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Sending you hugs Lily, you are blessed to have known such love.
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Good morning everyone!
I have not been here for a few days, because I have been getting every possible second out of this beautiful weather! That means that I have been pretty much living at the beach. I am blessed enough to have the choice of the Sound (salt water) or a lake. I think I have it down to a combo, lake during the heat of the day to enjoy the shade tees and the warm salt free water and then the Sound in the late afternoon early evening to watch the sunset. Rough life I lead!
The weight discussion that went on here yesterday I totally get. First of all I agree with Katie, men can be dense sometimes. Seriously our minds just don't work the same and we should just give up trying to believe they do! As for the weight question, here was my dilemma. I was on a diet when I was diagnosed and had just lost 20 pounds, with probably another 35 to go. BUT, my husband, sister and children were all there when my doctor said we don't want you to lose anymore weight. To me that was more punishment, but my family took it very seriously and got on my case whenever they thought I wasn't eating enough or had lost a pound or two. Then I had to go on steroids and I gained that original 20 right back. I felt bad enough with the side effects of Tarceva, being overweight, by a lot, just made me even more depressed. Since I have been on Avastin, however, the foods I love just don't interest me anymore. Things like potato chips, chocolate, McDonalds, and soda just don't taste the same. So, in the last few months I have lost 25 pounds. My family is alarmed, my doctor hasn't mentioned it and I feel better and more confident than I have in years. I told my worried children that I still could lose another 20 and still have 20 extra to work with and that calmed them down a bit. I am not worried, because on top of the weight loss, it seems to only be junk food I no longer like, I could eat a whole watermelon, a couple of pounds of cherries and a dozen peaches (and I have always hated peaches). So I figure I am healthier now too.
My half year resolution Katie, is to stop worrying so much about what other people expect from me and to (nicely) stop letting them do things for me that I really don't want done (sometimes "help" isn't exactly "help".) And instead, start putting myself first. That will be a hard one for me. But I am tired of being tired trying to keep up with all the "helpfulness"!
Today I am going to quick-clean the kitchen, then off to the lake, then the Sound and then home for chicken on the barbecue. I have my sister and her husband coming on Thursday, and my daughter and her boyfriend for the weekend so I plan to just do a little bit of cleaning each morning and not stress about it or what food I need to serve them. I live for summer and I am not giving up beach time!
I hope you all have peaceful days!!
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Happy Thursday everyone!!
It is beautiful here today, about 80 degrees, blue sky, warm breeze. I plan to spend another hour or two weeding the gardens (it is a never ending, joyful task), then head to the beach. I will stay there until sunset (I already warned my husband that dinner is nothing but hot dogs, the beach is calling!).
I hope you are all enjoying beautiful weather and the wonder of nature.
Peace
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Susan, I am in awe at your push to excersice, you have a lot of inner strength! You are AMAZING!
here is what I know about bunnies. the momma makes a shallow hole in the ground, usually close to people, activity etc. (thinking fox and hawks won't go there) She pulls out her own soft underbelly fur and uses that and grasses to make a soft nest. Once the babies are born, she covers over the hole with more grass. She packs it in pretty tightly. She only comes back to check the babies at dawn and dusk so as not to alert predators. people don't see a momma in the nest and assume the babies are abandoned, not true,she is watching at a safe distance. If you see a bunny in your yard sitting very still at dawn or dusk, she may very well be sitting on her nest and the babies are under her nursing. if she sees you near the nest, or even if you touch the nest or babies, she will not abandon it. (although she will probably get pretty stressed!) Once the babies are old enough, about 3-4 weeks, they just leave, and they are on their own. If you are an animal lover like me, those 3-4 weeks are very stressful, especially when the neighbors have a very carnivorous cat!
So, that was my nature lesson for the day!
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Good afternoon everyone! It is chilly here again. 75. Add to that the fact that I live close to the water so there is always a breeze, I have goosebumps! I made the mistake yesterday of meeting my friend at the beach instead of the park. It was so cold and the sand was blowing into our eyes, and yet we stayed for 2 hours! Today I am staying home and weeding my perrenials. they really need it and I am having a rough day energy wise so it will do me good to sit among the flowers.
I have my brother inlaw and his wife coming for the day on Saturday and my sister and her husband coming for the day on Monday. I get exhausted and a bit shaky just thinking about it. my husband of course says no problem, he will just grill - but some one still has to plan the menu, shop, prepare the food and clean the house and that would not be my husband! I just have to remind myself that it is ok to lower my standards a bit!
Lily, I love reading your posts here and on Facebook, I marvel at how much you get done in a day, you are like the energizer bunny!
We had a momma bunny make her nest right outside our front door. I have been a wreck for the babies safety for weeks, as has my Golden Retriever, we both kept an eye out for the neighbors cat and chased it away vehemently when it came hunting. Last evening the babies moved out, I feel like I can breathe again! Nature can be stressful!
Diane, I have been thinking of having the mobile groomer come to my house, I just can't manage bathing a 95 pound dog anymore. Our vet tries to space out the big dogs to keep the waiting room manageable, but It is still hard to manage a frightened large animal good for you for treating yourself to the mobile vet!
have a happy day everyone, I am off to weed (nap) in the garden
Peace
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I have been on Tarceva for 5 1/2 years. My side effects have improved immensely, mostly thanks to my dermatologist and an antibiotic 3 days a week. The stomach issues are still here though. I can go for days with no problems and then there are days like today where I run to the bathroom every few minutes. I haven't heard of a link to Crohn's disease. I HAVE had doctors that don't understand Tarceva side effects and then they get very upset about some of them and try to find other causes. I am Not saying it isn't Crohn's but I would want to check with your oncologist, Dr. West and yes, maybe contact Genentech about whether there has been an issue with Crohn's and Tarceva.
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Sorry I didn't respond to this right away. I love that term "unremarkable". My oncologist uses that one a lot. I never thought being unremarkable was a good thing, but now I love it! So, it sounds like your scans were unremarkable enough to let you enjoy your summer, garden, watch the birds and enjoy. breathe! Hugs and peace!!!
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Donna, you are both in my prayers.
Peace and strength
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I think I lurked here for almost a year before I first posted. I found the site by googling questions I had and I kept finding answers by the same person - Ernie, from the Lungevity site, so I decided to check it out. I am a generally shy person. Even on line. (I don't ask people to be my Facebook friends, I wait for them to ask me.) So, I just lurked, afraid to butt into a conversation. But in those months I began to feel like everyone here was my friend. When I first posted I was overjoyed to get responses from people I had been "reading" for so long, Ernie, Ry, Ned, Beatlemike, Bruce, Kasey etc. It gave me such an instant connection, a feeling that I was no longer alone. I started telling all my family and friends about my "friends on Lungevity". I have come here often, with questions, with good news and bad, and hopefully I have helped others with support. I have also spent a lot of time in the Just for Fun forums, because, let's face it, we have to remember to forget about the cancer and have fun! There have been periods when I disappeared from the forums for a while. Sometimes after the loss of someone I have grown very close to or when I am going through a really difficult time, it is just too hard for me to be here. But, I know that when I am ready to come back, the folks here will accept me back, no questions asked and support ready!
My family and friends all know how important this site is to me, I have said before that this site and my in person support group are my life lines. Everyone here gets it. It was very hard for my husband to understand the connection, until the Hope Summit. He was so amazed at the connections a group of virtual strangers had, the laughter, the smiles, the hugs and mostly that his shy wife wasn't being shy!
I have been watching the "visitor" numbers on the bottom of the page. Lately it seems the numbers have been high, 50 or so visitors when I am posting. that is a lot of people getting support and hope from this site, whether they are posting or not. Someday they will break their shyness barrier and join in too and when they do, we will be there for them.
Katie, thank you for all of your hard work. God bless you.
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Susan
It took me a while to answer this one because it is a hard one! The replies you have already gotten are amazing and true, let me try to explain it from my perspective.
When I was in my early 30s my mother had pancreatic cancer. She kept apologizing over and over to her children for "doing this to us". We all felt she was crazy for thinking this, SHE didn't do anything to us, the cancer did. We were thankful that we could be there for her, that we could comfort her, support her, take time away from our "normal" lives to be with her. When I look back on those days I do not think about the stress it caused on my family, or the money that was spent, or the things we put aside doing, I think of the joy we had with her, the peace we felt knowing we were helping, and the strength we developed as a family working together. Then I got cancer, and I found myself saying the same thing to my husband and children, "I am so sorry, for doing this to you.". I felt guilty that I had taken their joy, their belief in happy endings, their belief that we would have a long life together. I felt guilty for giving them pain, worry, stress. But, they reminded me that I hadn't done any of that. Cancer changed things. But our love would not let it ruin our lives in the process.
I guess some of it comes with time, but I can look at my family now, 5 1/2 years later and see that cancer did just the opposite of ruining our lives, it made us all stronger and it most certainly made our family unit stronger. My children are closer to each other than a mother could ever hope for and my sisters and I have developed a new found respect for each other and a friendship that goes beyond the bonds of sisterhood.
Just this week there was a huge sign for me that they were going to be ok. My oldest child has always been a momma's girl. Even before cancer, she called everyday, came home as often as possible, and preferred my company over her friends and boyfriends. I was so worried that the diagnosis would make her even more dependent on me and for a while it did. This week she was discussing her career and boyfriend with me. He is in the army. My daughter, the one who swore she would never live farther than 2 hours from her mother, told me she would probably follow him wherever he ended up being stationed. This was such an amazing relief to me. Not that my girl might live far away, but that my girl is not letting my cancer define her life, she will and IS going to survive this. All of my children will survive this, and they will be stronger siblings because of it.
My husband and the money is a different issue. We have been married for 30 years, we have been together 37. Our marriage has evolved into what can be described as a good friendship. In other words, we do love each other, but our lives certainly do not revolve around each other. He has been at a loss as to what to do to help, not being particularly affectionate or romantic, the best thing he has found to do is to work even harder. To him, the way to help is to relieve the money worries. I know he is not doing this because he is worried about the money, but instead that he knows I am worried. I can think of a thousand other ways he could help, but this is what works for him, so that is what is best for us. I have learned to let people help the way they can, not necessarily the way I need and to be grateful for that. I think the way I can honor him the most, and help him deal with this is to accept the ways he finds to help and the ways he needs to deal with it. (I am also very grateful that we are lucky enough to have health insurance and I wish that every American could say the same, but that is a political issue so I won't go any farther with that.)
I don't know if any of this helped, but just remember that YOU didn't do this to anybody and the people around you know that and love you and are grateful that they can help.
Remember also, that none of us are promised a tomorrow, that is why we have to truly LIVE each day. (my 23 year old son just asked for advice on saving money, I told him not to save more than a few months living wage. Instead, enjoy his life, it is too short not to. )
Matt E. from the Hope Summit put this quote on FB today, - "Worrying does not take away tomorrow's troubles, it takes away today's peace.". Words to live by.
Peace to you, and huge hugs
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I had a tumor in the pons area of my brain in December '06. It was treated with fractionated stereotactic Radiation. In April 2011 I had 6 new tumors in my brain. I had Gamma Knife Surgery for them. Now it is June 2012, all my metastasis are stable and I am just now putting my feet up after a long, full, day.
When you meet with your Onc, he/she will have options for you. take notes, research them, come here to ask questions. I know it is scary to hear it is in you brain, believe me, I know, but they can do so much now and there are several options for treatment.
Please keep us updated
Peace
Janet
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Anybody out there today? I have noticed big numbers on the forums for visitors lately. if you are out there just checking us out, or "lurking" - please pop in any of the forums and introduce yourself or ask a question or just come to the air and tell us about your day!
I had a sad day today. As many of you know I volunteer at a rescue farm. It is impossible to not get attached to the animals, there are a few I am VERY attached too. Piper was the one I was most attached to. Piper the Duck passed away yesterday while I was at the Cancer Center. She was an amazing duck who was a vital part of our preschool and field trip programs. She happily let dozens of children pet her each day. She had a funny story as to why she was on our farm. Two boys, middle school aged I believe, took their mother's credit card without her knowledge, went on line and purchased duck eggs and an incubator! They hid it all under their bed and their mother was clueless until Piper started quacking!! Since they lived in an apartment, Mom said that Piper had to go, but since she was raised by two boys who loved her, she was a very sweet and friendly duck. I miss her already, as does her best "duck friend" Buttercup. If you have an animal friend, be sure to give it extra love today.
Yesterday was my infusion. I started at 9:45 and was done by 2:30, but then I had to wait around for support group at 5:30. I had big plans to go out to the roof top garden and read, but they offered to let me stay and hang out in the Barcolounger, which I did, and I took a nice long nap instead! I still got my chocolate croissant though!!
My support group, which is for lung cancer patients and their caregivers, has about 20 regular members, but the last two times we have had new patients join us. I am so glad they came so early in their diagnosis, it took me two years to go to group, now it, along with this site, are my best therapy!
I hope you all had peaceful days.
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Eric, you really do seem to get the most out of every day! good for you!
I had my little buddy Shea visit me last week. That means that by Friday night I was completely exhausted. I slept from the time they left at 4:00 until 9:00, got up, had dinner, and went back to bed until 11 the next day! Saturday and Sunday I just rested and read. I seem to have caught a nasty cold, probably from being rundown by a 5 year old. I am trying hard not to cough here in the infusion room, but the lady across from me keeps glaring at me!
Today it is supposedly beautiful out, 80 degrees and sunny. I, however have been in the infusion room since 9:30 so I wouldn't know! My infusion is only supposed to take an hour, but it usually takes four or more just waiting for the pharmacy to deliver it to me! I have support group tonight in this same building, so I am in no hurry. When my infusion is done I will go to the beautiful rooftop garden here at the cancer center and read and maybe even sleep a bit. (the garden even has a river running through it!)
Oh, and have a chocolate croissant. They make the best chocolate croissants here!
The farm I volunteer at has started to really pump up their Facebook page, if you want to see some amazingly adorable animals, you should check it out!
Have a wonderful day - peace
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Sue
I was just trying to get caught up on the site after having a busy week and I saw this. At least one member of my in-person support group is on Crizotnib and she has been doing very well. I think she has been on it for quite a while now. We have support group on Monday so I will check, but it seems like it has been a year or more. I am sure she would be happy to chat with you if you want to talk to someone else who is using it.
you are in my prayers, always
Peace
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hi guys, sorry I haven't been around, but I have had company all week. My little buddy Shea is 5 and the closest thing I have to a grandchild. He and his mom came for a visit on Tuesday and just left. We explored marshes, went to the beach(the Long Island Sound)., the lake, and the farm. In between, we sang, read stories, played games and bounced about! I am exhausted and am already lying down and may sleep the weekend away! Hope you have all been well!
Peace
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Judy, we had a family of racoons in our chimney for over a month. I got quite attached to them. I of course never saw the babies, but I could hear them crying for their momma when she was out, and I could see the Momma sitting on the top of the chimney sunning herself on sunny days! Of course, now that the babies are grown and gone, we will have to have the chimney cleaned and capped before anyone else moves in!
Ann, you can get called back for jury duty that quickly
in Florida? here in CT, once you have served, even if only for one day, they cannot call you back for 3 years.
It is a perfect day here. I spent the ,morning at the farm and the afternoon at the lake. Now I am home to garden a little bit before I go out to a bluegrass concert at my church tonight. it is supposed to rain all day tomorrow, I don't mind, I need a day to be stuck inside and get the cleaning done!
Thoughts of are course with Judy in KWs family today. Judy would have loved my farm today, so many babies there!
have a fantastic finally Friday everyone!!
Oh, and if you are new on this site and reading these posts, why not stop and post a Hi! we would love to get to know you!
Peace
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Sue,
I hope lots of people chime in on this, because we all deal with it very differently. What works for some may not work for others and how we act one day can certainly change the next.
Like you, I have stage 4. I have mets that are stable at the moment but they are there, in my spine, ribs, femur, lung and brain. Makes me sound pretty sick huh? The thing is, except for my funky, short spastic hair, I look perfectly healthy and normal. On top of that I am (usually) a laughing, smiling kind of girl, so people who don't know me really well, or who only see me once in a while assume I am perfectly healthy, even cured. That can be so hard, because the thing is I can act smiley and happy and active for only so long each day, and then my body crashes and I need to either nap, or rest, alone and quiet and because of my outward appearance, people don't get that. People question me on why I don't work, why I can't volunteer more, why I don't do this or that.
So, with people who question me, I gently explain to them that my meds make me very fatigued and that I have to put my health first. I try not to let them bother me, but I also don't pull any punches, yes I have cancer, yes I am tired, no, I don't have to do what I don't want to any more!
With my family (husband, kids, siblings, dad). I am very open. I do very little crying in front of them. (The only thing that really makes me cry is the sadness this causes my children.)
We are, as a family, very irreverent about the cancer. We joke about it, curse it, use it as an excuse to do whatever we want and do our best to not let it be the ruler of our lives.
We treat it like that nasty relative who you have to live with, but you don't have to pay attention to. I talk about my mortality very openly with them all, so they can see that I am not afraid. I have begun planning my memorial service right down to the music I want played at the gathering afterward., I have gotten my church to start planning a memorial garden so I have a place for my ashes, I have donated my body to medical school. All of this we discuss, and joke about and treat as "normal" conversation.
My kids no longer live at home, so thankfully they do not have to deal with it or even think about it on a daily basis. We keep it very light and they really only worry now at scan time. My sisters are sure I am dying any day and hover over me like I am fragile. I have to tell them, often, that I am not going anywhere soon so please treat me normally. It is hard for them as I am the"baby" so I let them hover, they need to for themselves. My husband has gotten very complacent about all of this. He does need to be reminded that I can't do it all anymore, and that time is precious. He was never a doting husband and, although in the beginning I was upset by his complacency, I have now come to the conclusion that this is the way he can deal with it. (and you can't teach an old dog new tricks!)
I guess the answer to your question, how do you talk to others, is to just be honest. tell them how you feel, that some days you are sad or scared or too tired to move. people that are important will understand.
I have been at this for 5 1/2 years now. 5 1/2 years ago I was given 6 months. I guess that really made me step back and review the way I was living each day. I see each day as such a gift, I thank God for each morning and each evening. I try to enjoy every moment and every sight and every person I encounter. I try, somedays I am too tired, but I try. I think that this is in an odd way a gift cancer gave to me. If I was cured tomorrow, I would hope I would retain this awe and wonder at each day and each experience. I am trying to instill this awe in my children. What Randall Broad spoke about at the Summit hit the nail on the head, everyone should live as if they have cancer.
I don't know if you believe in God, but for me, that faith has been such a source of strength. I am not afraid of death, I am only sad it will come sooner than I hoped. I ask God daily for strength and courage for me and for everyone on this site.
I ask for him to give you strength -
Peace
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I was wondering that about Randy too Sue!!
I have always wondered who really did kill Lizzie Borden's parents?
I am sorry I haven't been on line here all week. I had everyone home for the weekend, with two extra, and although it was wonderful and full of lots of laughter, food and love, it totally wiped me out. When I am this tired it is hard to even think about what to say. Much less type it and proofread it.
Today is hot, muggy, overcast and threatening rain. All the flowers and vegetables need watering, and I have put it off all day thinking the rain was coming, but nothing yet. Yesterday it was very hot and sunny. After the farm, I went to the beach and finally finished my book ( good thing, it was a library book, due yesterday!) I recommend it, Bel Canto by Ann Patchett. . It was actually chilly at the beach, I wrapped up in a blanket to stay warm. That is another thing I wonder about, why people live in a beach town in New England but won't go to the beach because it is hot out? That will never make any sense to me. Florida I can understand, but here it is always cooler at the beach, and you can always sit with your feet in the water.
Yesterday was my 30th wedding anniversary. 30 years ago, in a tiny church in a tiny town called Hinckley NY. We picked multitudes of lilacs from area farms that morning and made them into bouquets and filled vases with them to fill the church. I had a panic attack right before I was to walk down the aisle, not about marrying my husband, but because once we were married we were going to move to Houston. My father told me he didn't care what I did the next day, but the wedding was paid for and I was walking down that aisle today! Throughout the ceremony the priest, a grumpy old drunk tried to talk us out of it, and as soon as the vows were said he announced, well that's it, you can't get out of it now!
30 years went by very fast, and we have been very blessed. I am glad I listened to my father and not the priest!
have a wonderful day everyone,
And keep wondering
Peace
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I have been crazy busy with everyone home so I haven't been able to post, but I had a moment and saw your question Judy. If I remember correctly it was Judy in KW that started the air. This forum - just for fun- had daily jokes, and sometimes fun starter questions. Sometimes the starter questions led to lengthy back and forth discussions and friendships started. Also, a lot of us were not able to do the regular Tuesday night on line chat room, but wanted to connect a little more with each other, so people started posting little things about their lives here (this was before Facebook was so popular). Judy decided to make it an official daily thing and started "the air". I tried to search for the original air, to find out the origin of the name, but the airs are deleted after a certain amount of time. maybe Kasey, or Randy or Katie remember the rest of the details. Alot of the original "air-ers", no longer post on the forums for various reasons and I think some just do the more chatty stuff on Facebook, but if you are out there and haven't posted yet, please join in! This is where friendships are made! When I got to the Hope Summit, it was surreal and wonderful to meet people I already knew so much about because of the Air! We would love to get to know you too!!
I am having an amazing weekend. nothing is better than having all 3 kids home at the same time, and my daughter's boyfriends seem wonderful. I feel, however, that once the last of them leave, I will sleep for a week!
We have had beautiful weather, a bit buggy, but sunny and warm. Tomorrow is the Parade, then one last barbecue, or maybe we will treat them to lobster rolls.
I hope you are all having a Wonderful weekend also!!
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Happy Friday everyone!!
I am busy doing last minute stuff before MY KIDS COME HOME!!!! I am kind of excited! It is harder and harder now that they are grown and live on their own, to get all 3 of them in one spot at the same time. And, I must say, the three of them together are like a great comedy act! I have one more trip to the grocery store,a stop at the liquor store, one more vacuum (that is a constant with my golden retriever) and then start cooking!! I am trying hard to pace myself so I can enjoy the weekend without being exhausted. My oldest daughter can only come for one day which makes me a little sad, but it is ok, I have her for one day! It is a sign they are grown up when they come for day trips I guess!
I hope you all have wonderful weekends planned, and that the weather holds out for any ceremonies and/or parades in your town. If any of you are veterans, THANK YOU.
Peace
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Bruce,
I am so sorry. Sending you hugs and prayers.
Peace, Janet
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Sue,
I have been on Zometa for 5 1/2 years now. I started with an infusion once a Month, after a while changed to every other month and am now getting it every third month.
(my sister, who had breast cancer and the beginning stages of osteoporosis gets an infusion every 6 months) It would be worth asking your oncologist about.
I had one of those moments myself today. I tried to run some errands and by the third store I was leaning heavily on the cart to continue. I looked around at all the people who were running about smiling and full of energy, many of them older than me and felt so frustrated. good days, bad days, everyone has them.
Peace
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WHOO HOO for your last treatment JUdy in MI!!
Thank you everyone for your suggestions about my crazy eye symptoms. It did make me feel so much better. I hesitated to tell my doctor because last summer I had a seizure and they wouldnt let me drive for 3 months. Now, with summer here, no kids left home to be a chauffeur and a brand new yellow beetle, that would be HORRIBLE! Anyway, I told my APRN 'off the record" and she said we would just keep an eye on it.
It is beautiful out today, but I have been inside cleaning all day. Headed out to the stores now for some little odds and ends and then hopefully I will finish up my book on the deck.
We are supposed to be having rain today and tomorrow and then a nice weekend, I hope so. I have all 3 kids and 2 boyfriends (my daughter's boyfriends, not mine
) and it will be so much nicer if we can be outside for meals and yard games.I live in a "summer town" and my road is right off the road to the beach. You can tell summer is almost here because the traffic has doubled and getting out of our side street will be hard for the next 4 months. That and the line at the grocery store! I try not to complain, I get to live here all year long!
Have a wonderful Thursday everyone
peace
) and it will be so much nicer if we can be outside for meals and yard games.
Monday's Air
in JUST FOR FUN
Posted
Good Afternoon!
I have had so much company the last few days that I ended up in bed by 10 and slept til 11 a.m.! now it is 12:30 and I have barely moved. Everyone wants to visit the "sick person", but because I do not look or act "sick" they tend to forget. So, I do the cooking and cleaning and hostessing and between cancer and growing older, I am just not up to it anymore! I was supposed to have my little 5 year old buddy visit for the week, but they had to cancel, I am a little disappointed, but actually very relieved!
Today is a beautiful day, blue sky, 80 degrees, cool sea breeze. I will spend the afternoon in my garden and then head out to the city for my support group which meets at 5:30. The rest of the week I plan to sleep at the beach!
Have a beautiful Monday