Janet B
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Posts posted by Janet B
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Eric, I am so glad to see you back also! I am so sorry about the loss of your sister. I know your positive energy and gift of laughter will help you heal quickly.
Lilly, I have been following your trip on face book and am so sorry you have been sick the whole time. I hope you start feeling better SOON!
Chris, (do I have your name right, AnnieRSA?). I am so glad you stopped into visit at "the Air"!!! This is the place we come to chat about our everyday lives, with cancer stuff mixed in sometimes, and to get to know each other. I hope you stop in often so we can get to know you better! We post sporadically, but someone does try to start it each day, don't let the spammers scare you away! I read all your posts and am anxious to see what the doctors come up with for a plan for your mom. She should be tested for the EGFR mutation, check out my signature to see my story.
Well, today I have already been back to the grocery store for the things I forgot, made the sweet potato casserole, cranberry sauce and pumpkin pie. Still so much to do, but as I was driving to the store stressing over how much had to be done all of a sudden I remebered that it is Thanksgiving!!! And I am here for it!!!! So, no stress, just gratefullness and smiles. Everyday is a blessing, as Randall Broad says, "It's an Extraordinary Life!!" (For those of you who don't k ow Randall Broad was a speaker at Hope Summit, he is an author, inspirational speaker and lung cancer survivor)
There is a homeless person outside our grocery store the past two days. She has the most beautiful Basset Hound with her. Seriously, this dog is show quality. Anyway, yesterday I stopped to give her some help and chat with her and her dog and today my husband and I made her up a little bag with healthy snacks for her and biscuits for the dog. We were having so much fun filling the sack, but when we put the baggie of dog biscuits in it, my dog went crazy! I guess Golden Retrievers don't understand the spirit of giving!! He is still glaring at me!
Tonight my other two kids come home. My son in time for dinner, however, my daughter's boyfriend finally got leave, but won't arrive into Boston until after midnight, so they will get in around 3 or 4 in the morning. I don't think I will wait up!!
Enjoy the blessings of this amazing holiday of gratefullness!!
P.s. Eric, Thanksgiving is Thursday! Always the fourth Thursday of November.
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Good morning friends! I thought I would brave the spammers and try to start a new post. Hopefully they won't glob on to it!
First of all, Katie, I am so very sorry for this loss of your Father in Law. I hope you, your husband and children are healing. (And I especially hope you didn't have the need to start that hedgehog farm!)
And Diane, I am so sorry about your Dog's diagnosis. My Sean (Golden Retriever) is my constant companion and best caregiver so I totally understand how important a pet is in someone's life.
I have been trying to keep my energy level at or above couch slug! The chemo fog is slowly wearing off, I can now make it to the stores, but only for about an hour and then I feel like I have been hit by a ton of bricks! This past week I have been trying to get the house cleaned ( remember it was not Charlie's best trick while I was out of commission!) and shop for Thanksgiving as well as start the Christmas shopping. Just a tiny bit each day, but it is really wearing me out. My problem is that I am not willing to give in yet - I have always been big on Holiday traditions, and strive to make each one magical for my children. I am not willing to order in Thanksgiving dinner, or pare down the Christmas gifts or food quite yet. I did make a big step forward by assigning each child a dish or two to be in charge of. It will make Thanksgiving morning in the kitchen a little crazy, messy and noisy, but I think it will also be a lot of fun and I will have more chances to sit on my bottom enjoying a cocktail or two!
Soon I am headed out to the grocery store for the last minute items. My middle child, Lauren, is home already. The other two, Kristen and Michael, come in tomorrow night very late or very early Thanksgiving morning. We are hopeful Kristen's boyfriend will be with them, but he is in the Army and they still have not said yes or no to his leave. Unfortunately if they don't answer by today there will be no way for him to get a plane ticket. When they arrive depends on when he is able to get to Boston (where they live).
Tonight I have a meeting at the cancer hospital. I somehow managed to get volunteered to be on the Patient, Family Advisory Council. I guess it is because I have been a patient for almost 6 years! if any one has seen what is going right and wrong it would be me! I think the committee is a great idea, it is just hard because the hospital is 45 minutes away and I have to be there so much as it is. I actually skipped support group last night because I knew I wouldn't have the energy to drive out there two nights in a row.
OK. It is already 11:45 and I still have to shower, dress, shop, put away groceries and leave for the hospital by 4:00!!! I don't see how that is going to happen, but I will do my best!
Have an amazing day everyone.
Peace - Janet
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Yesterday was a hard day for us here, I am so glad I had the opportunity to meet Sara, a young, brave, joyful young woman. It is hard to come on here and chat about my day after losing someone in our "family". But, I think I have to. We all have a tendency to stay away after a loss, and this forum and the whole site suffer because of it. We are family and we need to stick together. We need to keep the hope in our lives, and the joy each day brings. We need to come here for Sara, and Susan and Judy and Ned and all the others we have lost. So...
Today it is not as cold. It is actually a beautiful fall, crisp, bright day. We lost several trees in our yard during the hurricane and one of them was covered with a Bittersweet vine. I just went out and snipped off several pieces and am going to clean and begin decorating for Thanksgiving. I am actually excited to clean. Being physically unable to for so long, the house is kind of disgusting! My husband tried, but his idea of cleaning is sweeping every other week and doing the dishes once a day. The dust is very thick and the bathrooms....
! Tomorrow my daughter will be here to celebrate her birthday (which is today). She is 27. How did that happen??!! That was a very FAST 27 years! When I was 27 she was 1. Seems like yesterday.
I hope you are all having beautiful fall days also.
Peace
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Good afternoon friends!!
It is so cold here right now. Last week we had a hurricane, yesterday a Nor'easter. Today it is very grey, windy and spitting cold rain. Life is never boring in New England!
The biggest problem is that my husband grew up in a house with no heat, so he doesn't believe it is ever cold enough to warrant using the oil, AND we live in a very drafty house. So, I have been attempting all morning to get dressed, but it is too cold to get out from under the blankets!
I am going to attempt the grocery store today. I haven't shopped or cooked in months because of the "chemo effect". But my oldest daughter is coming home for her birthday this weekend and I want to make her favorite dinner (roast chicken with all the fixings and pumpkin pie) We will see how it goes!
My middle daughter is in medical school at NYU and both of the hospitals they are affiliated with, Langhorne and Bellevue, are still closed because of the hurricane damage, so they are having her do her next elective at Yale. (That is where my oncologist is) That means she can live here for the next month and take the commuter train into the hospital! More important, it means I have her home for the holidays! I am very excited!
I will post an update under the appropriate forum later, but my latest scans came back stable, which was great news. We did stop the chemo early because my body was not handling it at all, but my doctor assures me that he has other tricks up his sleeve if needed so I am not going to worry during the holiday season.
time to put on the Uggs and Down coat and brave the cold -
Wish me luck!
prayers going out to Sara
Peace, Janet
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Hi friends. Diane is so right, this has been a very tough year. My heart is so heavy today with the loss of friends and the huge struggles of others. I was at such a loss as to what to do, how to move and function. So I came here. Because this is the place I first found hope and strength. And laughter. because laughter really IS the best medicine. So, all day today, when I feel down I will close my eyes and imagine Diane running after her poor dog with a long handled spoon trying to catch his pee!
I had a very very hard summer on chemo. I was unable to do much more than get from bed to the couch and the couch to the bathroom for the last 3 1/2 months. I wasn't on here because honestly I could not concentrate long enough on any one thing to accomplish much more than hitting "like" on Facebook and watching really dumb daytime tv. I have been off the chemo for 6 weeks now, and for about a week and a half now I have been slowly improving. This weekend was the Breathe Deep Boston walk and I was hoping to just be able to make it there. I not only got there I actually walked one mile of the route!! God is good! I will post pictures when I have more time. It was a beautiful day and a very successful event. Oh, and I won one of the raffles, a night in the beautiful Charles Hotel in Cambridge Ma!
Hurricane Sandy hit my town pretty badly, but nothing like NJ. My heart goes out to the people there and in Staten Island.
praying for everyone today and always.
Special hugs to you Katie, for all you do, no matter how much you have on your plate. Please take care of yourself.
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Hi everyone. I have been missing from the boards for a few months, because,frankly, I have been missing from life for a few months. A little background. In early July new mets showed up on my scans, miliary nodules in both lungs and a met in my spine. The treatment plan was to stay on the Tarceva and Avastin but to add Carbo and Alimta every 3 weeks. The plan was to do this for 4-6 weeks and then drop the Carbo and continue on the Alimta as a maintenance. I was so hopeful and optimistic. Supposedly, for most people, this is a very doable combo and the side effects did not seem at all frightening.
I guess I am not most people. I have been totally debilitated by this combo. I have extreme fatigue, can only walk about 20 feet without gasping for air, getting light headed and sitting down. I can't get up the stairs, everyday tasks are nearly impossible. I haven't cooked, cleaned, shopped, driven, gone to my farm, the beach, a friends etc etc in 3 months. I just sit here on the couch and watch stupid tv (I have no concentration for books or crochet). I feel this way until the day before or day of chemo, then it starts all over again.
My 6 week scans showed shrinkage and stability which was great news, but since my counts kept being so low and my quality of life so miserable, we stopped the Carbo after the 3rd cycle and continued on with the Alimta every 3 weeks as a maintenance (along with the Avastin and Tarceva). The big hope was that without the Carbo, I would start to feel better. I don't, not at all. The thought of feeling like this indefinitely is so depressing and defeating that I have forgotten about hope.
Now my doctor wants to take me off the Alimta.
He feels I am just super sensitive to chemo and he wants me to feel ok again. He will keep me on Tarceva and Avastin and has hopes that eventually I will qualify for a clinical trial. I have such mixed feelings about this. On one hand I am beside myself with joy that I will start to feel "normal" again, that I will be able to enjoy the holidays and yes, that I will finally get my house cleaned! (cleaning, cooking, and caregiving, I have discovered, are not things my husband does, but that would be a whole other post!) But more so I feel like a failure, a quitter and mostly like I am letting down myself and my children. When I was first diagnosed I sat my kids down and promised them I would fight this with all I had, I would not give up, and now, it seems I am. I have never felt so tired and defeated. I know I cannot go on living like this indefinitely, because this is not living, but I am not a quitter and so I am torn. My husband does not get it. He thinks I am just not trying hard enough, I am just not pushing myself. That makes me feel even worse. Have any of you had to give up on a treatment? Have any of you had the people closest to you not "get it". How did you deal with it? I feel like I have hit rock bottom in my mental fight against this and it was always my optimism that carried me. This is the most lost I have felt since diagnosis.
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Thanks for the support guys! My doctor assures me that the Alimta/Carboplatin combo isn't as hard to deal with as other Carbo combos. I most likely will not lose my hair, I probably won't be very nauseous, But I will probably be very fatigued, and achy on day 4 and 5, as well as the concerns about my blood and anemia. Right now I am just trying to survive the 3 days of steroids. Steroids really affect me, I am jumpy, shaky and cannot sleep at all. hopefully they will wear off quickley.
I am very good about staying hydrated as the side effects of Tarceva are not as bad if you stay hydrated, so I almost constantly have a bottle of water in my hand, and drink a whole bottle in the night.
I am trying to keep my spirits up. Last year when I had the tumors in my brain I was terrified, We had just lost Ned to that in a matter of weeks. This time I am frightened for a different reason, we finally had to give in to chemo. I had avoided it for 5 1/2 years, kind of holding on to it as a last resort, and here it is.
But God is good, life is wonderful and there is always the beach and the farm to remind me to smile!
Your support, of course, is the best medicine!
Peace
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So, I had my tests and followup last week. Not the news I wanted to hear, but the news I somehow expected to hear. There is more new growth. Specifically - "slight increase in size of pulmonary nodule in right upper lobe, development of tiny miliary nodules in the right upper and middle lobes, development of osteolytic metasis in lower thoracic vertebra, new lesion in the T-11 vertebral, new subcentimeter hypo densities in the spleen concerning for metastatic disease.". In my mind, being the positive sort, I am very grateful the cancer left my brain alone this time!
I am writing from the lovely infusion chair. This is the new plan. I will continue on Tarceva daily and Avastin every three weeks. We are adding Alimta and Carboplatin every three weeks. Starting any minute. If any of you have experience with this combo, please send along advice!
The good news/bad news is that none of my mets have ever been big enough for me to qualify for a study. Nor are they big enough to biopsy and study.
So, that's my latest. I should be here in this chair for the next several hours and then downstairs to my much needed support group meeting!
Hope and faith are always with me. What good friends they are!!
Peace
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I am so sorry you found yourself back here, but happy that you knew where to come!
I don't have any answers for you about the chemo and anemia problem as I have been on Tarceva since diagnosis and never did traditional chemo. But I just wanted to welcome you back.
Is your oncologist working hard to find alternatives to a chemo that would affect your anemia? In the meantime, hopefully the radiation will do the trick!
From your post I can tell that you have a positive fighting spirit, and that will get you very far!
Peace
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I am glad you found this forum, like Randy said, look around and read some of our stories, ask us questions and please keep us updated.
I was diagnosed 5 1/2 years ago with stage 4. Like your dad I was lucky to have the EGFR mutation. (one of those weird things when having a mutation is good!) My mets were in my spine, which caused severe pain in my leg and in the pons area of the brain. I had radiation to my spine and stereotactic radiation to the met in my brain. The leg pain did go away as the tumors shrunk. Are there any plans to radiate the mets in the brain?
The good news as that I have been on Tarceva for 5 1/2 years. (last year I had some new growth and we added Avastin).
The Tarceva side effects are sometimes hard to deal with. It is important to talk with the doctor about ways to treat the different side effects. (At my cancer center we have a dermatologist who actually specializes in chemo and Tarceva side effects.). I find that the side effects are worse when I am over tired, stressed, don't drink enough water during the day and spend too much time in the sun. Water especially is important! Imodium helps with the diarrhea.
you can check out my story in the My Story forum viewtopic.php?f=47&t=46162
Please keep us posted, and please remember to take care of yourself too!
Peace
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Good morning everyone! I am sitting here at the Cancer center, in between tests, so I thought I would start the air.
It is very, very hot and humid out today, so of course, it is freezing in the hospital. I am sorry, I will NEVER understand the love of air conditioning! I am miserable cold and I have a sweatshirt on in July.
Yesterday was one of those perfect days Eric spoke of, I spent the morning on the farm playing with the children and the animals and then headed over to the lake where I floated about in a tube for hours.
I am a little worried because they are saying we will get bad thunderstorms this afternoon and I left every window in the house wide open. Hopefully my husband will be able to get home to shut them all. (he only works a mile from home).
Well, I have been here since 8:30 and won't be done till around 2 or so so that is about it for me, hope you are all have more exciting days! Enjoy the sunshine!
Peace
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movie nights with popcorn, perfection!
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Eric, I agree with Susan, you are AMAZING! Congratulations on the job, it seems perfect for you and you perfect for it!
I too am so thankful for those perfect days that remind us how blessed we are. Mine usually involve my house filled with my children or days spent lying in a tube in the lake.
I had a slow weekend. I haven't been feeling too well, sore throat, achey, fatiqued. so, I spent Saturday reading and resting in the garden and then yesterday it was grey and rainy. today is a beautiful day, but I still don't feel great. I am going to the grocery store in a few to get an easy dinner and then I think I will head off for a nap at the beach. Usually my husband joins me after work and we stay until sunset. The house really, really needs cleaning but that can wait for another day!
Peace
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I LOVE that news Bruce!!!
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Susan.
I just can't do it ALL anymore. That is part of the problem we discussed in the Air last week. I look fine, I act fine, but I just can't do what I used to. The biggest difference is that I can't multitask anymore. I used to be the queen of multitasking, now it overwhelms me and exhausts me. If I had company coming or a party to plan, I could organize the whole event, cleaning, shopping lists, decorating, etc. in my head. Now I have to make copious notes and still can't focus on menus, or shopping lists. Everything takes longer because I can't think as clearly or shop as efficiently. As a result, I no longer enjoy having company and for the first time in almost twenty years did not throw my annual summer party. Last week three different people called to say they were coming for a visit within days of each other and I started shaking, crying and was unable to function for a full day just thinking about it. After they all left, I was exhausted for days.
When I am stressed, tired, anxious, the pain does get worse, mostly at night. I tend to tense up in my sleep and wake up to sore bones, muscles and headaches. This is where we have to adjust to the "new us". Stress and anxiety cause us exhaustion and pain, so now we have to figure out how to have less of it in our lives. That is the hard part, because the things I loved to do (entertain) now cause me stress. So, now instead of big parties, I will settle for just having another couple over. I did actually put on my big girl panties and told one friend that wanted to come for several days, that no, I wasnt up to it. That was a first for me. There is still the problem of mothering though. Because no matter how old my children are, I will always worry about them and stress when they are stressed. But, if I can lessen the stress everywhere else, then I will be able to handle the "mother stress" better.
Somedays, when my day consists of going to the lake and then going from there to the Sound and all I do is read and float and sleep, I feel a bit guilty - but I feel so much more relaxed, stress free and happy, that the guilt goes away quickley!
So, no, you are not crazy! You are a very sensible woman working to keep her health and sanity!
Peace
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Welcome Sandy! I am so glad you found us, this is a great site for support and friendships!
good luck in your new job - cheers for new beginnings!!
Peace
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Good people have no fun!
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Food makes my tummy sick.
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Well, I gave in yesterday and ended up going to the beach after all. It was beautiful as always! another perfect day here today. I am truly blessed to live somewhere that the smell of the sea air comes wafting through my bedroom in the morning! The down side of where I live is that all around me are summer rentals. that means people on vacation, clueless about those around them. My neighbors have played their radio at full volume for 3 days now. I woke up at 2:30 in the morning and it was still going!
Today I DID stay put in my garden. I am busily whittling sticks to use as plant markers. (the sensible side of me realizes that when I am gone my husband will have no idea what is a plant and what is a weed if it is not marked).
Tonight we are headed up to a vineyard for a concert/ picnic/ wine tasting. The musicians are two young men we have known since they were born. they play "Americana". if you use Facebook, check them out - The Meadows Brothers
Have an amazing day everyone - going now to play Ann's new word game!
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Tube Top
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I am so glad you found this site, there are so many people here that understand and can answer questions for you.
I sounds like you had an (unfortunately) pretty typical start with this, Lung Cancer seems to be one of the last things doctors look for, especially if there is no cough involved. my story was similar to yours, although I did not have to wait as long to be seen and diagnosed. I had bad back pain, but I was a preschool teacher and a student jumped on my back (playfully) when I was sitting on the floor, so I figured that I had a pulled muscle. When It didn't go away, I figured it was kidney stones again, when I could no longer walk, my doctor said it was a herniated disc. But unfortunately we were all wrong. Like you It had spread to my spine and brain.
The good news is that your treatments have started. Once you have a treatment plan, things start to settle down and you can spend less time in the "confused and scared state of mind" and more time in the "healing and hope state of mind". I love that you are using imagery to eradicate the cancer, I do the same thing, positive thoughts are healing thoughts.
keep us posted on how the chemo is doing, if you have any side effects people here who used the same chemo can help you with suggestions.
Prayers and peace!
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Road kill
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Good morning everyone!! it is another beautiful day here in CT! The sky is blue, 80 degrees, and the morning glories are open. There is something about a morning glory that just makes my heart smile! I am going to do something very different than my normal routine today. I am NOT going to a beach!! I decided last night, while sitting at my second beach of the day, that I needed a day home, just enjoying my garden. So, that is my plan, a little much needed housework and then ice tea And a novel on the patio. Of course by early evening I still might end up at the beach for the sunset!
I think I got about one hour of sleep last night. I didn't take any Ativan thinking I was so tired I wouldn't need it, big mistake. My scans are next week and the "scanxiety" has settled in. I thought I was past scanxiety, but I guess not! You are the only people I have told about the scans so shhhh! For 5 1/2 years I have been accompanied to every appointment by at least my husband and sister, sometimes more. I have decided from now on I want to go it alone. I have been doing my infusions alone and I find that, for me, it makes me feel stronger and more confident not to have an audience, I only have to worry about myself. We will see, my family is sneaky and determined, they may just find out and come along and of course I worry about hurting their feelings, so I might just give in and let them come. sheesh!
Susan what you wrote on Monday about doing too much and how you feel bad if you can't keep up and be the mom that you have always been - wow - that could have been written by me! I KNOW my kids would be happy to shop and cook when they are home, but taking care of them is not something I am willing to give up just yet. this living with cancer is hard!
I am off to get my day started ( at 11:30, sheesh I am lazy!). I hope you all have morning glory moments in your days!
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How Come
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A Letter To Santa (by Jennie Davis)
in GENERAL
Posted
Thank you so much for "bumping" that up! I had never seen it before and it gave me goosebumps. I never "knew" Frank, but I wish I had, what an amazing man he must have been. The post reads like an amazing poem, begging to be illustrated. I am copying it and saving it to read and re read. What a nice gift on this cold gloomy day.