Janet B

Hugs to you for the loss of your mom, and your aunt. the anniversaries are hard, they are a reminder of sad times, but trying to spend them remembering the happy times can be the best medicine. It is wonderful and huge that you are a 7 1/2 year survivor! I am sure that your mom knows that and that it is making her very happy!

She just SKIPPED your bloodwork?!! Wow!! I am sure you are fine, but I would imagine she broke some major rules? However, getting in and out quickly was a major bonus. I only go in for the hour long infusion of Avastin, and it always takes at least 3 or 4 hours waiting for the bloodwork and pharmacy. Last time it took 4 1/2 and I made a complaint, I never complain, but that was ridiculous - I have cancer people, things to do, places to go!!! I am off to the church in a bit to help with a mailing. My church is just a couple of hundred feet down the road and the administrator is a dear friend, so I go in whenever needed to help fold bulletins and stuff envelopes, but mostly for a good cup of coffee and conversation! My middle child, Lauren,is coming home for the long weekend. When she is home she mostly just studies (she is in medical school which requires a lot of that!). But, I like to make sure I cook her all her favorites, so after the church I am off to the grocery store. Yesterday I went to give my OLD golden retriever a ride in the car and he couldn't jump up to get in. He tried every door, ran around and around the car trying his hardest, but he just doesn't have the hips for it any more. It was so so sad. he is my best friend and I am afraid I am going to lose him sooner rather than later. The hardest part of being a pet owner. I just went on a rant on my nieces FB page. She put up something about lung cancer needing research dollars and her friends answered with the typical lung cancer stereotypes. Normally I try not to hijack someone else's posts with my anger, but somebody needed to be educated! I did feel much better after I hit send! have a wonderful Friday everyone! Peace - Janet

Maria, Just be sure to ask when you get to the infusion center if they can give you a quick "intro" to the space. I never got one of those and have actually spoke to the nurses about possibly preparing a little booklet for new patients. At my hospital someone comes around with a cart of snacks. I never knew in the beginning whether I had to pay for them (no) or whether my guests could have something ( sure). After several visits my daughter asked and found out that there was a coffee maker down the hall for patients and guests as well as a fridge with sodas and juices. Even later I learned that not only are the chairs heated, but that there is a button for radiant heat that is aimed right at my chair and that the TV is equipped with a DVD player. There is a hook up for my iPad and my daughter heard the nurse say they had extra cords if needed. The point is, don't waste time being hungry or cold like I did, ask the first day! I always bring a book,my iPad, some crocheting, a snack, and bottled water. A nice sized tote bag is helpful. and definitely comfy clothes. One more thing, listen to Randy, we are ALL terminal from the moment we are born. Don't let that word eat at you. Peace - Janet

I never watch Dr. Oz but I did for Kasey! So proud of her!! The lung cancer "blurb", in fact all the "blurbs" might help people seek medical advice sooner - and maybe just as important, Dr. Oz stressed the point that it was the number one cancer killer of women, and that 1 in 5 of those women never smoked. The audience member he had on stage was shocked by that, hopefully everyone sitting in their living rooms heard it too!

Stephanie was a friend I never met. She was a support whenever I was down, when I got good news and bad. She was a member of the sisterhood of crazy Tarceva hair. She was a confidant about this cancer life filled with fears, side effects, and sadness. She was caring and giving to so many both here and at Cancer Grace right up until the week she died. Stephanie and I planned to finally meet in May. Even though we both had stage 4 cancer, it never crossed my mind that wouldn't happen. I was so excited to meet this person I only knew through the written word, but just KNEW I would be friends forever with. My heart is broken. I HATE lung cancer, but I love Lungevity for giving me the opportunity to get to know Stephanie. I will miss her so very much.

HAPPY VALENTINES DAY!!!! I hope you all are having a good day, spending time with people or things that you love. I just made the mistake of going to CVS. There must have been 20 men in line. There were few cards left, and no Valentine chocolate (the shelves had been restocked with Easter stuff) The guys had all sorts of stuff they hoped would pass off as thoughtful! I kind of felt bad for them. When I was a teacher, this was my favorite holiday. There is something so sweet about how excited little ones get giving out and getting Valentines. And, all the ribbon, doilies, lace, glitter - so much fun! Peace - Janet

Good afternoon everyone! I was not on line this weekend, my oldest daughter came home for a visit. It was perfect timing as I am having a very hard time with Stephanie's passing. it has hit me very very hard. So, the perfect medicine was cuddling on the couch with my girl, eating candy hearts and watching favorite movies. Judy from MI put up another Carepage post, all about the naming of her oxygen tanks, too too funny. I needed to wake up to that positive energy today! (she named one Quashie, which is, I feel, a good "sign". The little guy I talk about sometimes on here, my friend's 4 year old who I love so much, his last name is Quashie!) TomK I am so jealous that you not only got to go to Key West (it is on my "life list") but that you got to meet Judy in KW too! It sounds like you had a wonderful trip, and I am going right out to buy some Rain-x because my wiper blades are always in disrepair! This will be a slug week. I miraculously have no doctors appointments and a week off from the farm. I am going to organize photos, finish the sweater I am crocheting and finish the novel I am working on. In other words, a "me" week! Peace - Janet

I am sorry you are having trouble with your shoulder Bud. For someone as active as you, this has got to be very rough. I hope it is an easy fix. I am always in awe at how much you do, me, I am more of a couch potato. If it weren't for my work on the farm, and an occasional cleaning of the house, I would get no exercise! I am too sad today. Stephanie was so good to me on these boards and, like Judy, I was so so sad that I couldn't get to DC to meet her in May as the conference was the same day as my big goal to make it to my son's college graduation. After his graduation, my oncologist asked me what my new goal was and I said, "to meet Judy and Stephanie in DC next May." Today I just want to cry and scream and throw things. This sucks. Our church has a contemplative service tonight. I will go and my prayers will be for Stephanie and all of us. Peace

I am so so sad. Stephanie gave me so much support and encouragement on these boards and through pms. We bonded over a similar diagnosis and crazy Tarceva side effects. I never got a chance to meet her in person, but it was obvious what a warm and caring person she was. We were looking forward to finally meeting this spring, it was the next milestone I was aiming for. I will miss this woman I never met so very much. My heart is broken. Michael, if you read this, my prayers are with you. Thank you for making our friend happy. Peace, Janet

Ha Ha Diane!!! But you KNOW that the memories of the funny things our grandparents did are the ones we remember the most and still giggle about, with love, years later!

Good afternoon friends! Judy, I have been in that position - thinking I can handle a big box on my own, then struggling not to drop it in the parking lot and KNOWING people are watching me and probably laughing! I am so glad someone came to your aid! And Eric, I also know how you feel. I did a radio interview on a local NPR station. They gave me the questions ahead of time, and I thought I was doing a good job. Then they went off script and asked about my children and how they were coping. I got all flustered and emotional and started babbling a bunch of unrelated gobbledygook. I never listened to the Interview afterward, or even gave anyone else the link to hear it! I am sure, in hindsight, it was fine! I am a little jealous of the bowling evening. In my younger days, I spent an inordinate amount of time in the bowling alley (sometimes wonder if it was all that second hand smoke that got me - now you can no longer smoke in bowling alleys!!!). When my kids were little I was on 3 leagues at once. I was never great at it, but for someone who hates playing sports, that was one I loved. I spent all day yesterday at the hospital. My Bloodwork was at 10:30, doctors appt. at 11, and infusion at 11:30. However, the lovely inner workings of the pharmacy messed up somewhere, and my Avastin and Zometa didn't show up until 3! I had support group at 5:30, so I just hung out with a book afterward and waited for that. Then the hour drive home at 7:30, it was a long day. Today I shall be a slug. Peace janet

hi everyone! I am sitting here in my lovely infusion chair. It is going to be a loooooong day - I got here at 10:30 for Bloodwork and appointment and will be sticking around for support group at 5:30. Thank God for my iPad, a good book and homemade chocolate chip cookies I smuggled in! As for the Super Bowl talk - I was raised by a crazy Giants fan, he even dragged us to Giants practices and scrimmages, so, in rebellion, and because my children love them, I am now a Patriots fan. Needless to say, I cared about this game, and am not happy with the ending! But, it is just a game! I thought Madonna did well, some people thought it was boring, but I think she tried to keep in mind it was a family show and toned her style down for it. Not really a Madonna fan, except for her role in Evita in which she was amazing, but she was better than some previous half times. I truly think the best part of Super Bowl Sunday ( besides the food) is the Puppy Bowl on Animal Planet! So much more fun watching puppies play than grown fat men! Have peaceful days! Janet

Purple is already the color for "all cancer". Isn't it? I really question coming up with a new color. We know the spectrum of white/pearl/clear. I think that a better idea would to get all the different lung cancer groups to agree to rally around one of those rather than introduce a whole new color, which would only divide us more.

Jennifer I am so sorry you have to go through this. I too agree that your mom could maybe use an anti depressant or anti anxiety medicine. This is a really really hard diagnosis to wrap your head around, and it takes time and work. I also think that putting little healthy snacks, fruit & nuts, in front of her without any pressure to eat them could work. If you are sitting there chatting and munching on orange slices, she will start to munch without even thinking about it. Is there a lung cancer support group in your area? Even if your mom refuses to go, you could. (it took me two years to walk through the door to support group and now I wouldnt miss it.) I know the caregivers at my support group depend on the group for advice and encouragement. Also, if she won't read any of our stories, you could try to just casually add them into conversation. When you first get this diagnosis you really feel like you will be dead in a week. pretty daunting feeling. You can tell your mom that you met someone on line that was diagnosed stage 4 with tumors in her spine and brain over 5 years ago and she is still living, enjoying her family and getting out every day. it takes faith, it takes love, it takes work and a little Ativan doesn't hurt! My prayers are with you - please keep us updated Peace - Janet

http://www.ctchallenge.org/Page/3343/Ya ... Group.html This group meets at Smilow Cancer Center, Yale New Haven Hospital every other Monday from 5:30 - 7:00 Pre registration is required, contact facilitator Irene Scanlon at 203-688-3218

Hi everyone! I have been missing for a few weeks, so I am very behind on how all you have been doing. I have been reading MI Judy's care pages and am so happy you are home again! That was a long haul - phew!! And Stephanie, know that my prayers are with you - keep up that sense of humor and you will do well! Eric, I have to thank you for introducing me to The Corries, I enjoy them! This is a You Tube link to one of my favorite American groups - I think you might enjoy them, they play in your neck of the woods alot (this video is from Shetland). They are called Crooked Still. http://m.youtube.com/index?desktop_uri= ... qqwC5y6SR4 I plan on having this version of Ain't No Grave Gonna Hold My Body Down played at my memorial service!! I have been kind of in a major slump on my end. I have been in a bit of pain, which makes sleeping impossible and enjoying the day even more so. So I have not been online as much, not much desire to do anything. But I promised myself I would get back to the air, because a little fresh air always makes one feel better!! I just wrote a long email to my doctor, updating him on everything, in preparation for my appointment on Monday. Hopefully we can figure this all out and get back to enjoying life. Phil (the only Official groundhog) saw his shadow, so six more weeks of winter. Since it has been in the 40s and 50s here in New England, that is doable! Enjoy your day everyone! Janet

Hugs Nick - You remember the important things.

Ha Ha Eric! I figured out on my own that you were pulling my leg! I was telling my husband at dinner about the Haggis bird. But, I said, the leg thing just can't be true! So, I googled it and I discovered that Haggis not only sounds totally unappetizing, but that Scots love to trick unsuspecting foreigners into believing the lopsided leg story! According to Wikepedia 33% of Americans believe that story!

Good afternoon!! The sun is shining - but it is 32 degrees. Another day for me to hunker in. We are supposed to get some snow tonight - and I have to go to the farm in the morning - so as long as I have to be out, I will get all my errands done then. I am still flogging through my husband's mess of files. He has been doing the bills for several years now (we used to take turns) and it seems he has been pretty overwhelmed with all the medical bills and insurance stuff, so he stopped organizing sometime around '06. What a mess! Everytime I look in a new spot, I find more stuff! He is upset that I am spending so much time fixing it, but I will feel so much better knowing it is organized again! Bud, you amaze me, sore shoulder and you are still biking and boating. Here I am with no aches and pains and all I am doing is "slugging"! I will say in my defense - I HATE being cold. So I am always a winter slug! Eric, I have no idea what any of those things you are bringing with you on the bus are - but as long as there is some beer, I will be happy! Judy in KW - I have never been to Grace - if I go on how do I find Stephanies post - I have been worried about her too. And wow - you must really not want to do the taxes - I HATE ironing. I iron each thing as needed. Never a big ironing day like my mom did. Back to the pile of files. I know deep down it is the fear of dying and leaving anything out of place, but if that is what it takes to be totally organized, so be it! Have a great day everyone - peace - Janet

Hi everyone - I meant to post earlier but somehow my whole day went by, it is time to start dinner and I have done NOTHING! I started out with good intentions, I wanted to write to one of the newbies in the introduce yourself forum. But, I knew it would be a long post, and for fear of losing it I thought I would type it out first - only on the iPad I dont have Microsoft word. So, I downloaded the app for that, typed out the whole letter and then couldnt figure out how to get it from there to here! So, I ended out copying the whole post by hand and then retyping it onto the forum. That was my day! Now I am back working on cleaning out the files. I finished mine but without his permission I have started in on my husbands, what a mess! I like doing it though, for a few years I was a file clerk in a medical office, I like to organize (and I live with a very unorganized man!) Judy in KW. I always have that mold problem here in the summer. One of the few bad things about living close to the shore. I will give the bus a try, I hate to be a party pooper! Besides, Key West is on my life list of places to see! As long as the bus doesn't mind making a trip to New England on the way to Key West! (I can bring you all over to see Kate Hepburns house!) Also, if Muriel is bringing her Golden Retriever, I will bring mine along as well (his name is Sean) I bet they will have a lot of fun together! Ginnyde - I AM part Irish! My bladder can hold nothing, I can't giggle or sneeze or cough without having to go - UNLESS they ask me to go in a cup!! And, yes I am thrilled my son got a job! I was feeling so bad for him, people don't even write and tell you no even if you have gone in for multiple interviews, they just leave you hanging. He graduated with a degree in Neuroscience and got a job doing research at Harvard, so we are very relieved! We have lost so many friends here. The list is way too long. I have lost too many at my in person support group too. It makes me so sad some days, other days, more of them, it makes me want to fight harder. I couldn't tell you the weather today, I haven't opened the door! I know it is too cold for comfort! Have a wonderful evening everyone Peace, Jamet

I am so sorry that you and your family are going through this. Please know that the people on this site have so much experience and are here for you with answers and encouragement. The first thing I want to say is, you guys are so new to this. You are still in the very scared, sad, and confused stage. It is hard to believe, but once treatments start and you have a plan in place, things get better. You have Googled stage 4 lung cancer. That is a very scary thing to do. Many of us started out doing the same thing and many of us, I am sure, also went right to bed for a week after doing so. BUT, then you get up, shake it off and decide that you - or your loved one - is not a statistic and you FIGHT. Look through this site, read some of the stories in the "My Story" forum. My story is there. I just passed my 5 year anniversary of LIVING with stage 4 lung cancer. I am active and happy and enjoying everyday. The next thing is the communication problem you are having with your dad. When I was diagnosed my children were about your age. I can tell you that telling my children and seeing them so sad was the hardest thing I have ever had to do in my life. It is still the hardest thing for me when scan time comes around, not the fear that the scans will bear bad news, but that if they do I have to make my children sad. So, I am sure that is what your father is thinking also. We parents are like that - we are supposed to take care of and comfort you, not the other way around. Talk with him. Tell him that not knowing is making you more scared than knowing. Ask him to give the Dr. permission to talk directly with you if you have questions or concerns. Ask him if you can go to his appointments and infusions to give him support and be another ear for him. Come to this site often to ask questions. You don't have to be incredibly strong. This diagnosis will knock the legs right out from under the strongest person. You just have to be an ear to listen and a shoulder to lean on. Now, I know all families have different dynamics. I know that how you handle this is totally between you and your parents and that each situation is different. And, I know that you are new to this, young and scared so being home with your family might be the best thing for you and them for awhile. When I was first diagnosed, I still had a child at home and the other two only lived a couple of hours away and came home on the weekends as often as possible. But what IF they had moved back here and given up on their dreams? They would have been sitting here for 5 years - 5 years - instead of going to college, starting their careers, going to graduate school, falling in love , living their lives. I have gotten so much happiness, joy, and pride watching them live and grow. It is such a comfort to me to know that my disease did not stop them from living. So, just consider that. Be there for your parents, but please don't let the cancer take away your chance to live. As you find out more about your Dad's condition and treatment, please keep us updated and again, check out the other forums, you will see that there is a lot of hope here. peace - Janet

Good afternoon everyone! I am writing from the lovely infusion chair! Actually, it is lovely, the chair is heated, I have beautiful view of the city and I don't have to feel guilty about doing nothing with my day! I really am so blessed to live so close to such a wonderful Cancer Hospital. I have to wait a bit for my infusion because I can never "pee" on demand! I got here at 10:30 for my blood work and appt, had two cups of coffee and a bottle of water and I just now was able to go! If I was at home I would have gone ten times by now! The nurse gave me permission to go at home from now on and just bring it in with me, I am so glad I asked! Met with my APRN, she feels the bone aches are just yet another Tarceva side effect (oh joy) and that the stomachs issues and nausea are from the Celebrex I have been on to help control the swelling in my brain. We are going to try to go off that for a while and see what happens. (any of the usual drugs to help with the stomach and nausea lessen the effectiveness of Tarceva) I am glad, I think the Celebrex has definitely been messing with my stomach and I have enough stomach issues with the Tarceva! My son (my youngest) was supposed to start his first job since he graduated college in May today, but he just emailed and said there was a mix up with HR and he can't start until Monday now. I feel bad for him, he is itching to get started and we all will feel the job is more "real" once he actually a starts! I took all my Christmas decorations down last weekend, it felt so good! I love having them up, but it is so nice to get the house back to normal once they are down! Our tree was very dry by the time we took it out so I think I will be sweeping up pine needles for months! Like Ann I put up less this year than usual. I liked it, less is more! So, someone explain this "Bus Trip" thing to me?! MI Judy, if you are reading, you are in my prayers! Peace -Janet

Good morning everyone! The sun is shining - but it is very cold outside! Judy - I always tease my sister about cleaning for her cleaning lady. She apends hours, picking up rugs, stripping beds, etc. But, I guess maybe I am just a little jealous! And, when I ask my husband to pick up after himself he doesn't get it either. The joke (one of those sad jokes that is really the truth) between me and the kids is that when I am gone this house will look like Grey Gardens (if you don't know it google it - an amazing story!) Diane - I laughed all the way through your story because it sounded so familiar! When we were newlyweds we moved from our backwoods, upstate NY town of 500 to Houston Texas. There were not 1000's of coakroaches but on the very first day when my husband left for work I saw my first cockroach ever - and I was too afraid to kill it, or take my eyes off of it in case I lost track of where it was, so I spent the whole day in an empty apartment (we had no furniture) watching the damn cockroach! (it didn't take long to realize 1 cockroach was unusual - multiples were the more common scenario!) We also had water moccasins in the driveway, and unbearable humidity (we had a car that was dark burgundy inside and out with no air conditioning.) We lasted 18 months - and have been back in the North east ever since! It sounds like MI Judy had a rough day yesterday, lots of guests and pain management problems. I hope today things go smoother. It is so hard when people visit, you want visitors, but it would be nice to have some sort of schedule so they don't all come at once - and know when to leave! I wasn't on line much this weekend. My middle child came home for a surprise overnight visit. She is in medical school and crazy busy but they gave them the weekend off as a surprise. It was a nice calm, quiet visit which was good as I haven't recovered from the holidays yet. She mostly just studied and watched the games with her father (thank God the Patriots won or it would have changed the mood of the weekend drastically!) Today I plan on cleaning out all the files and stacks of "important papers" that have piled up. (goes back to my husband and his "hoarding tendancy"!) I hope you all have wonderful days! peace - Janet

I thought I would show you guys a picture of Kate Hepburn's house, in case any of you were looking for a summer place

Good afternoon everyone! MI Judy, I read your care page - and am so sorry things aren't going as easily as we all have been praying for. You have an amazing attitude, I hope everything goes well tomorrow. Eric, Your life exhausts me! You seem to never stop! It sounds like you really enjoy life to it's fullest - that is wonderful! Ann, I haven't been to an auction in quite a while. I have a problem with them, I hate to lose, so I keep bidding - sometimes way more than I am willing to spend, then I wait in panic hoping someone DOES outbid me! (I have the same problem with ebay!). They are fun - just be careful!! Judy in KW - Katherine Hepburn WAS amazing. When I first moved to town it was kind of surreal to see her in the market, or at the ice cream fountain, or jay walking (she was a big jaywalker, I almost hit her once!) She always had on baggy slacks, a turtleneck and a scarf. Everyon in town really respected her privacy, we would nod hello and that was about it. She had a handpainted sign at the beginning of her driveway that said "please go away"! Her home is gorgeous, The origonal was destroyed in the hurricane of '36 and her family built this one soon after. The new owners completely renovated it and it can be yours for the low price of $28 million. I had the farm this morning, the sky was blue but the wind was rough, it is blowing upwards of 50 miles an hour. The horses and donkeys were loving it! Then I had to go to the grocery store and buy the food for my husbands birthday dinner, come home and start preparing it. He always wants Lobster Newburg so I just finished shelling two lobsters, now time to make an apple pie. The problem is all day long I have been so so nauseous. I have been having this problem a lot lately. Makes wanting to eat difficult. Makes wanting to cook even harder! I hope you all have a wonderful Friday the 13th!! peace - Janet