Janet B

Well, I did this once, but the post is lost somewhere in Ipad land so I will try again! Good afternoon everyone! MI Judy - you are in my prayers that everything goes smoothly and that you are back in your own home soon! I will be signing up for your carepage so that I can check in for updates to see how you are doing. I love the idea of giving your flowers to patients who have none - what a sweetheart you are! Lily - I am going to send you a Facebook friend request so I can see the pictures of the new baby - how exciting! Judy in KW - I totally understand your comment about the "snowbirds" vacationing while you are still living in the real world. We live on the CT shoreline and our town doubles in size in the summer with all the summer homes and rental cottages. The people directly behind us are summer people and they party well into the night, including loud music and fireworks, all summer long. I get all settled into my garden with a good book - and the party starts Speaking of it being a "summer town", Katherine Hepburn lived here her whole life, and the rumor was going around that the Obamas were going to buy her home for their summer place. Some people (me included) were thrilled with the idea, others very unhappy about it. I have a feeling it would have made for some interesting arguments around town, but, according to the White House, it was just that, a rumor. My husband thinks it was started by the real estate agent to get lots of free publicity for the sale - I think he may be right! It is a cold rainy day here. I am supossed to be cleaning but mostly have just been playing Angry Birds. Not good! I did put a pork roast in the crock pot, so at least dinner is started. Ann, I hope you got all your "thongs" done! Everyone have a great day - peace - Janet

I missed you all yesterday - my cable has been out since yesterday morning. That means, no Internet, phone or tv. In other words, pretty boring at home! Right now I am sitting in the library checking emails and the boards. It is seriously warm in here! If only they allowed coffee I think I would spend the winter!!! I hate being cold, and it is worse on Tarceva and our house is always so cold. But, it has to be 75 in here, I am in a comfy wingback chair, by a big bay window, maybe I can sneak a coffee in! I started back at my farm yesterday, we had a two week break over the holidays. It was so nice to get back to all the animals. They really do make a person feel better! I can't commiserate on the pain of taxes. My husband has always done all of ours, I just sign on the dotted line. He started doing them for his mother when he was just 10 and has been doing them ever since. I am so glad your spirits are better MI Judy, as that is half the battle. I laughed when you said they may change their mind and send you home, and then discussed the delicious breakfast they would be bringing you - when I was In the hospital, they kept changing their mind about surgery. So, they would tell me no food I was having surgery, then say, surgery is cancelled you can eat, so I would order a meal, before it would come, they would reschedule the surgery and cancel my food. this happened all week. I was in the hospital for 6 days and never got a meal - but you know, when the bill came, I was billed for food!! I hope you all have wonderful days, I am going to enjoy this warmth a little longer, then off to church to fold some mailings (it is cozy warm there too). Hopefully by the time I get home the cable will be fixed. Peace - Janet

WHOO HOO! That is awesome news! You give us all hope!

MI Judy - I am kind of enjoying your one woman conversation! I am glad you are starting to feel better and getting your spirits back! I totally understand the feeling you have about thinking of your hospital room as a little apartment - as long as I am not hurting too bad, I kind of enjoy the hospital room - I have complete control of the television remote, can sleep whenever I want and not feel guilty about it, people bring me food and flowers. Not too bad! I also had a day like you did, where my room had so many people in it they were using my bed as a table to set up their pizza and chips and dip! I think they all forgot I had to get some sleep! Today I have to head over to the library and get some books to read to the kids at the farm tomorrow. Then off to support group. I am very lucky to live close to a Lung Cancer Support Group - ours actually tied for 1st place as Lung Cancer Alliance's best support group! We meet everyother Monday - and there up to 20 of us each time (patients and caregivers) It is about a 45 minute drive for me (it is at the hospital) but well worth the trip. Cold today in CT - about 35. I am ready for snow. I hate to be cold, but if it is going to be cold it might as well be pretty! peace everyone - Janet

Sorry I missed you all yesterday - I hope you are feeling better this morning MI Judy! I went into Brooklyn yesterday. Some of you know that I have a good friend who used to live in town and we raised our 3 kids together - always having playdates and family dinners etc. Well, she divorced and met someone new and now has a 4 1/2 year old little boy who has become the love of my life. When I got cancer I prayed to God to let me see grandkids, I think Shea is the answer to that prayer! - Anyway - up early, long drive into the city, full day playing like a 4 year old, long drive home - I slept from 12:00 to 11:30! Nothing much planned here today. In a minute I have to run over to church to fold the Sunday bulletins and then I think I will start taking down the Christmas decorations - always such a big job - someone here called it "dedecorating" I love that! A little jealous of the flea market Judy - I love a good flea market! peace everyone - Janet

It is 21 degrees out - sunny - but 21 degrees. Have I mentioned I hate being cold! Yesterday I finally felt a little more energetic and changed the sheets on all the kids beds and did some laundry - Ginnyde, if only you lived closer we could have done it together and had coffee and stale Christmas cookies while we chatted! The problem with doing the laundry here is that my husband installed the dryer in the garage (long story - and he has never been forgiven!) so when it is 21 degrees out, you have to be out there stuffing cold wet clothes in - and it takes twice as long to dry! I slept all night last night - and then some - went to bed at 12 - woke up at 10. I haven't done that in a very long time. Hopefully, by next week when the farm reopens from the holiday, I will be back on a good sleep schedule. Lily, I am so sorry for your loss. I hope you are having a wonderful time with your family and enjoying every second. I was in New Orleans once, just for an afternoon (we were moving out of Houston and back home to New England and stopped for lunch) It was so much fun I wanted to stay! Judy - my husband rarely goes away. Maybe an overnight 4 or 5 times a year and I LOVE it! Those are the days I have whatever I want for dinner (last time lobster and wine), eat it in my pajamas in front of the television and then get into bed with the tv on nice and loud! I am never afraid because I have this big loveable Golden Retriever, who, although he wouldn't hurt a flea, has a very ferocious bark! I got an ipad for Christmas, haven't downloaded Angry Birds - do you suggest it? I am more than a little addicted to Doodle Jump. Ginny - The Book of Mormons is supposed to be wonderful!! I am going to see Jersey Boys in April on Broadway. I don't know anything about it, I am going with all my cousins and my Aunt and Uncle - I think it was my cousins Christmas gift to them. I am off to the Gap today - I have to return a sweater for my daughter. I will probably stop by Michaels too, I can't resist it. Oh, and the book store. Ha Ha - I guess I am feeling stronger!! Have a wonderful day everyone - peace - Janet

We are all so thankful for Kasey - and for the doctors who give us hope! I hope you do something wonderful together to celebrate the day! peace - Janet

Eric - I thought it was Wednesday too - great minds think alike! I think I shall have to try dumplings this week, sounds yummy! (and cozy and warm) I am still being a slug, trying to recover from the holidays. I am supposed to be going into NYC on Thursday to see my favorite four year old and that takes a lot of energy! Peace everyone - and enjoy this beautiful Wednesday! Haha!

I would definitely be in the chicken lovers group Judy! I have only been to the Carribean once, but I LOVED that where ever you went there were chickens walking around. Of course I love the pigeons in NYC too! My kids all left last night - the house seems very quiet and empty. I plan on doing nothing today. I am pretty worn out from going non stop since October and having my kids home for a week and a half. Plus - I have not been sleeping well. I have been waking up several times in the night with pain in my bones. Mostly my hips and thighs, shoulders hands and feet also (haha - just about everywhere!) My scans all came back good, so my APRN and I are thinking it could be a side effect of something? (Avastin, Zometa?) Or, I am thinking it is just that I have been pushing myself to the limit and not drinking enough water. Anyone else ever have this problem? (if it keeps up I am going to be tested for Lyme Disease, since I live one town over from Lyme, CT where the disease was discovered it is always a possibility!) So, I think I will sit down with a new book, my new ipad!, and a hot cup of coffee and call it a day well spent! I hope you all have days well spent also! peace - Janet

Happy New Year everyone! For the new year I resolve to come to the forums more often! My children are all leaving today. They have all been home since the Wednesday before Christmas, and we have had such a wonderful time, that it will be very hard to see them leave. On the other hand I feel like I could sleep a week! My husband is driving the two that live in Boston home at 5 and I am putting the NYC bound daughter on the train at 7. Then I think I will get right in my pajamas and finish off the last of the Christmas cookies! We finished the old year off nicely, board games, movie, lobster and make your own sundaes. I feel especially blessed that I have 3 children in their 20's who live in major cities, yet they chose to spend their New Year's Eve at home with me! Have fun fishing Judy - I haven't been fishing in many many years. I love to fish, but I hate fish, so it is kind of silly. It is 50 degrees and sunny out today - not exactly a New England winter. peace - Janet B

Hi Fraves - I am so glad that you found this site - you will find, as you probably already noticed, that everyone here is very supportive! It seems that the pain your father is in is the biggest issue right now. When I was first diagnosed, I had 3 mets in my spine and one in the pons area of my brain. These mets were affecting the nerves which caused terrible pain in my femur. The pain got so bad that I couldn't lift my leg, get up from a sitting position or sleep. I was put on steroids right away and started on radiation. Between those two - the pain went away and has not returned. Has your father been given steroids and/or radiation? If not, that might be a question for his doctors. We are all interested to hear what happens with the biopsy. Treatment can be very individualized depending on what they find out. Gone are the days of treating everyone the same way. If you would like, take a look at my story (in the My Story forum) Hopefully it will give you some encouragement. And, please keep us posted on what is happening and with any questions you may have. peace - Janet B

Five years ago today on a gray rainy afternoon , I sat all alone in an emergency room and listened to a doctor I had just met moments before tell me I had stage 4 lung cancer and that I had less than a year to live. I was 47 years old, married to my high school sweet heart, mother of 3 children 18, 19, and 21 and a preschool teacher. Up until then, I was perfectly healthy. Thank God for second opinions. Just that morning I had put the finishing touches on the Christmas decorations, put together a homecoming dinner for my children arriving home from college that night and gone to the local clinic for a CT scan and MRI ordered by my PCP to see if the back pain I had been having was just a pulled muscle or perhaps a slipped disc. But, in a split second, my whole world changed, it is hard to explain to people who have not personally heard the words “you have cancer”, but those that have heard them understand that your world goes black, you are filled with terror, and inability to breathe, grief, confusion, and did I mention terror?? I remember wanting – needing - my husband (who they had not let come into the room with me ) and thinking how can I tell my kids, how can I do this to them, how can I ruin their Christmas? So, when the doctor said he was going to admit me, I refused and went home to spend the holiday with my family. The day after Christmas I returned to the hospital and after numerous tests it was confirmed that I did have lung cancer and that it had spread to 3 spots on my spine. (side note: NEVER go to the hospital the week between Christmas and New Years! All the doctors are away, I never saw the same one twice!) Surgery on my spine was scheduled, but further tests revealed that the cancer had also spread to the pons of my brain. Surgery was cancelled and radiation began. I had radiation to my spine and “Fractionated Stereotactic” radiation to my brain. The brain radiation involved making a hard full skull mask and bolting it, and me, to the table. Doctors tell you they are going to do these things to you so casually, like it is no problem, so many times I have wanted to say to them - YOU try it (and on occasion I have!) During the month and a half of radiation, I changed oncologists – again I say – Thank God for second opinions! My first oncologist said to me, while looking at everyone in the room BUT me, that he would use the traditional carbo/taxol chemo combo on me, because that is what he used on “all his patients”. I might not know much about medicine, But, I knew that didn’t sound right. The new oncologist I found, and have been with for 5 years, sat down with me explained exactly what was going on with me, said he would treat the disease like a chronic illness and that I was an individual and he would treat me like one. He said he expected me to be in the 15% of 5 year survivors and I believed him. He had me tested for the EGFR mutation and I tested positive, which made me a perfect candidate for Tarceva, which I started on Feb. 15 2007. The Tarceva worked, although it did have some nasty side effects along the way. My eyelashes grew out of control,, my hair almost all fell out, I developed bloody painful sores on my nail beds, had trouble with ear infections and eventual trouble with hearing loss, dry skin, diarrhea, fatigue, and a rash on my face and scalp that got so bad I had to be treated for staph infections. At the side effects worst, after about 3 years, I went down in daily dosage from 150 mg to 100 and doing that along with an antibiotic 3 times a week has the side effects pretty much under control. During this time, I discovered this group. It has been a Godsend. The people here are a wealth of comfort and knowledge. I “lurked” for quite a while, afraid to join, but once I did, everyone was so supportive and since I had lurked, I felt like I already knew them all! I also joined an “in person” lung cancer support group. I am very fortunate to live near one as there are very few. I have made friends in these two groups that I care about and pray for. I have lost friends in both of these groups. But belonging to a group of people that totally get what I am going through has been more than helpful. I can’t thank Katie enough for all she does here and for Lungevity. For over 4 years the Tarceva kept me stable – with no evidence of active disease. Then in April of 2011 an MRI showed more spots on my brain, and, because of where they located, probable leptomeningeal disease. (which is where the cancer is in the brain and spinal fluid) The first thing we did was Gamma Knife Surgery which is a targeted radiation. The Gamma knife was successful, but caused quite a bit of swelling in my brain causing a small seizure and very confused/drugged like behavior. (Did you know that – at least in this state – if you have a seizure you can’t drive for 3 months!!! - This really but a damper on my summer!) So, steroids were added. Meanwhile my doctor needed to get the Tarceva to my brain – so we tried a “Tarceva push”. That is, instead of taking 100mg daily, I took 1500mg one day each week (we called it Tarceva Tuesday), with the hopes that with so much Tarceva in my system , SOME would get to my brain. After two months of this Tarceva push, tests showed that although there was no more growth in my brain, there was new growth on my spine and ribs. Thankfully my oncologist always has another plan. Now we have gone back to Tarceva daily and added an infusion of Avastin every 3 weeks. After 9 weeks of this regimen, and 5 years as a Stage 4 survivor, my tests came back last week with no new growth, and everything else remaining stable or shrinking. God is great, my oncologist is wonderful and there is HOPE!! I know this is a long story – but I want all of you newly diagnosed to know just that – hope. Five years ago today I did not think I would see my son graduate from high school, he graduated from college in May, 5 years ago next week I put away the Christmas decorations carefully, with notes to my family about who gave us each and where they went, thinking I had seen my last Christmas, and yet I have set them up once again. Five years ago I was terrified, sad, confused, cancer was all I could think about. Now, it is no longer my first thought in the morning, nor my last before I fall asleep. I volunteer with children and animals at a rescue farm, I spend time with my family and friends traveling into Boston and New York, I go to the beach as often as possible. I have seen babies born and friends die in these five years. I have lived. I have survived.

Listen to the others - don't listen to statistics! They do no good and only cause anxiety. I was diagnosed with stage 4 almost 5 years ago - and like you I was originally told surgery would be done, then the doctor's changed their mind and planned chemo and radiation, then after a second opinion I ended up doing chemo and Tarceva - The thing is 5 years ago this December, I was right where you are now, confused, scared, anxious. Once you have a plan in place (and make sure you have a Dr. you trust and feel comfortable with) things get much easier, and less scary. I know we all have said that, but that is because it is true - once you have a plan and start treatment, you start to feel more in control. Ask questions of the folks here, everyone is wonderful and there are sure to be people who have had the same treatment you will have. And breathe! - You can do this!

Annette - I had to reply to your post - When my husband and I were first married we moved to Texas and were totally miserable (I always said if we could make it through our first year of marriage in Texas we could make it through anything!) Now, not to offend any of my Texan friends - but imagine - a young (23 year old) couple, just married, never away from home and family, home is upstate New York - a village of 500 people, weather never got above 80. - the culture shock of landing in Houston - in July - was mind blowing! Anyway we took a weekend trip to San Antonio and New Braunfels while we were there. We fell in LOVE with New Braunfels. It reminded us of home. (I lived on a river in NY state and we went tubing all the time.) I told my husband if he got transferred to New Braunfels or found a job there we could stay a bit. Instead he got transferred from Houston to Dallas - we have been in CT ever since! peace!

Judy in MI - Happy Belated Birthday!! It sounds like it was a perfect one! AND, I totally get the sleep thing - I now clean, do laundry, crochet etc at 4 in the morning - there is no sense struggling to sleep - I don't work anymore - so now I just nap when I can and try not to let it bother me! I haven't been on much - I have been reading your posts as best I can, but my double vision has gotten pretty bad (from the steroids or the swelling?) which makes reading on the computer and typing kind of hard! I start off each morning (since diagnoses!) doing the sudoku - I figure if I can do it the tumors in my brain aren't too bad! Well for the last 5 or 6 days I haven't been able to complete one and I was freaking out! Then I realized it was the double vision - I know where I want to put the numbers, but when I go to write them in I put them one square over! Today I worked very slowly with a straight edge for a guide - and SUCCESS! The little things that make us happy! Tomorrow I am headed to Maine for two days - my sister and her husband are there renting a cottage on Penobscot Bay for two weeks and we are going to invade for a couple of nights! Hopefully while there I will finally see a moose in the wild - but since I have been multiple times to Maine, NH, Vermont and never seen one I am beginning to think they are like the elusive Unicorn! So, I have been up since seven baking goodies to bring -raisin bread, zucchini bread, mollasses cookies, oatmeal chocolate chip cookies - yum - now to clean - then the BEACH!!! If I don't make it to the beach everyday - I feel like the day is wasted! Hope you all have beautiful weather today - I am so jealous of everyone meeting in Seattle! Not only would I have loved to be there to meet you guys - but ever since I was a little girl, and there was that TV show "Here Come the Brides" I have dreamed of seeing Seattle! (maybe it had more to do with my crush on Bobby Sherman than Seattle?!) Have fun! The sun is shining and the birds are singing - I have to get outside - and away from this computer screen - peace everyone!

Alan - had to reply to your neighbor dilemma. We live in a shoreline community, the population of our town doubles in the summer. The house directly behind us seems to be a "starter beach house" getting bought and sold every couple of years. The thing is - whoever lives there - is on vacation. And they forget that we all - are not! SO - this summer we have a bunch of karaoke crazies who sing Karaoke til 2 in the morning at the top of their lungs - mostly Whitney Houston - I Will Always Love You - and then a lot of rap with really really inappropriate language! I always wonder who raised people like that - didn't they have a mother who taught them manners?! I try to be patient - but my husband did go over one Sunday when the music was extra loud and the words were extra disgusting to ask them to tone it down. Anyway - just got back from the beach - I am going to "cancer" my plans to clean the house and sit back with a beer in the garden!

Hi guys - I was off in Boston for a few days with my daughters. We had a wonderful time - topped off by a walk off, slide into home, win for the Sox! Now, that is the best way to make lasting memories! Now I am home - all alone for one whole day - and too tired to do much of anything! It is hard to miss so many days of the air - so much news, so much to answer - but the sun is shining and the beach is calling so I will just say hi - and start fresh tomorrow!! You are all always on my mind and in my prayers! peace

Char - I can totally relate to this post. I was diagnosed in Dec 2006 and had 4 1/2 years of good reports, NED, no progression of disease. I knew the cancer was still there - with Stage 4 it is always there - but I started to think I would be the one who beat it, I would be the miracle. Then, in April, the scans came back bad. I too had Mets in my brain - at least 3 - turned out to be 6. I went through Gamma Knife radiation, and changed my meds. It put me in a bad funk - for quite a while. I have been trying very hard to be very positive through this whole thing - but after so many years of good news, the bad hit harder than I expected. On top of that, when I was first diagnosed, I had a list of things I needed to get accomplished, organized, cleaned up etc. And, although I did a lot of it, I got complacent and started putting things off. With the new news, I went into the crazy, things have to get done mode, which caused me more stress. Then, add to that the new meds I am on - which make me very jittery, very sleepy and very "fuzzy" and I am not the same person I was a few months ago. So, I understand what your husband is going through. This is hard. But, what makes it easier is talking it out. I try to always put my best face on for everyone, try never to complain, or say I don't feel well. That has gotten harder lately, but I thought I was still covering up pretty well. It turns out I was not! Now that my family understands how I feel, I feel more free to feel bad when I have to, to let myself be down sometimes. I would never have come out and told them, that is just the way I am - but when they came out and told me I was acting different it opened the lines of communication. I think it is very important for you to let your husbands doctor know what is going on with him. Again, I thought I was hiding things pretty well, until my family told my oncologist what they were seeing - If there is one person we have to be totally honest with in this journey it is our oncologist - so if it is not going to be the patient it has to be the caregiver! His doctor may be able to change meds, help with anti depressents, suggests alternate therapies etc. Take care of yourself Char - don't forget that part of it. You are in my prayers - peace

Good morning all! Bud - I hate to excercise - always have. (And, unfortunately my sister was my phys. ed teacher in high school!) Reading your posts about bike rides in 100 degree heat exhaust me! I feel like living vicariously through you I AM exercising! Just like I feel I am seeing America vicariously through Eric! Laban (Laurie) - Wisconsin is one of the places I have always wanted to see - and it seems like this is the perfect time of year to be there - travel safely! Judy in MI - we have no air conditioning - just fans - and I am worried about the bill. We did just get air in one of our cars - we are planning two several hour trips and I thought me might die without it! Annette - I don't watch the Bachorlette - but I AM addicted to Project Runway and stayed up til 1 last night to watch this weeks episode, which I missed on Thursday - crazy what we do! I am having a rough day - I have not felt well all summer - and I did too much yesterday with my men gone. Today I am headed off in a couple of hours to see my daughters in Boston. My oldest lives there, my other daughter lives in NYC but she is in Boston for a few days. We have tickets to see the Sox tomorrow. In this house we live and breathe the Red Sox! Anyway - normally I would drive - but I am not driving much these days (double vision is back) so I am hopping on the Amtrak. Luckily I can get on it about 1/2 mile from home and get off a block from my daughter's office. Hopefully I can sleep on the train and feel rested when I get there. I try so hard to be my old self when I am with my kids - but it is hard for any one to keep up with my two daughters! They DO keep me laughing! Have a wonderful day everyone! peace

Alan - I am with you - I loved my job, but really I LOVE being "retired" and having everyday be a Saturday - but people are always asking why I am not traveling and doing things - when you get cancer they don't give you money - they take it! Maybe I should start playing the Lottery!

Good afternoon! The potatoes sound DELICIOUS Judy!! Both of my men (husband and son) just left for a week long mission trip and I am FREE!!!!!! and ALONE!!!! I have not been alone ALL summer, because, oddly enough, the worse you feel, the more people show up to visit you SO - I am very excited and having one of my very favorite, yummy, but not particularly healthy dinners - Macaroni and cheese made with Brie, tomatoes and lots of basil and garlic. AND Brownies with walnuts for dessert!!!! I am still on the steroids - so food gets me very excited! So far today I have had two breakfasts, a lunch, a half bag of fritos, and several twizzlers! And Sara - I just saw you posted - dinner sounds wonderful! As for sleep - I am the opposite now - steroids again I think - I couldn't sleep for the life of me for 4 1/2 years - now I go down at 11:00 like a rock - and sleep right through - but only til like 6 - and then up like a crazy person - cleaning and doing stuff! (I have always been a night person, and a late morning sleeper - so this is all very odd - but I am getting lots done!) It is beautiful here today - the sun is shining - not too hot, nice breeze. The picture of snow blew my mind! peace everyone!!

I have lived a blessed life. I have been so happy, and have such a wonderful family and friends. I live in a beautiful spot near the water. I thank God everyday for the life he gave me. But I do have a bucket list - I call it my "life list" - my family thinks my list is odd! 1. See the blue waters of the Caribbean (did after diagnosis) 2. Hug a monkey 3. drive a backhoe 4. See Puxatawney Phil (the groundhog) 5. See a moose in the wild 6. Get a tattoo 7. see a buffalo roaming free 8. Own a VW bug 9. See the west coast 10. See the Field of Dreams 11. Ride a horse (did after diagnosis) 12. go Parasailing I guess I better get moving on this list - I think Hug a Monkey (preferably a chimp) is number one now - closely followed by the backhoe!

Your family is in my prayers. For peace - and strength. I can do all things through Christ who strengthens me. Phillipians 4:13

WHOOO HOOOO!!! I am so happy for you! What great news to wake up too! And I totally get the - let's not use up our options until we have to thought. That is the way my Onc and I have been going at it. Enjoy your day - bad foot up - something yummy to eat and drink - peace!

hugs and peace and happy memories