Janet B
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Where has everyone been? Hope you are all off having fun and enjoying the slooow arrival of spring!
I have been on a cancer whirlwind. Went to Boston on Monday to sign the clinical trial consent and set up all my pretrial testing, only to come home and get a call that the trial at my cancer center had an opening for me. Big decisions to be made, soul searching, pros and cons lists, multiple emails. I am 99% sure I am going to go ahead and do the trial at Yale instead of Boston. They are very similar, both "second generation Tarceva", so the decision really lies with staying with my oncologist of 6 years and not having to travel back and forth to Boston several times a month. (Of course I am also feeling very bad about backing out of a trial I had assured the Dr. I would be in.). Sometimes with treatment you just have to cross your fingers and say a prayer.
Today's big excitement was Barker, my bird, got loose! I must say, the wing clipping the pet store gave him did NOTHING! Boy can my bird fly! I have been keeping his cage open when I am in the room to try to help tame him ( he is still afraid of me getting anywhere closer than about an inch away ). I had recorded him chirping on my iPad, and without thinking, I played it, he totally freaked out and flew out of the cage. he flew all around the downstairs and then disappeared for about an hour. I finally found him behind the curtains in the dining room, but he took off again. After a while he got stuck behind the couch and I managed to grab him. he can bite very very hard by the way! I think we set taming back about a month! the best part was Sean, my Golden Retriever, never even got up. He just watched from his bed as if birds fly about our house all the time. barker is sleeping now, he had a big day!
Off to clean - my best friend of 43 years is coming for the weekend! I haven't seen her in 5 years as she lives in California.
Have a wonderful day!
Janet
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Well, the sun is shining again! The are saying it will be in the mid fifties throughout the weekend which will be wonderful! Our family tradition is whiffle ball after appetizers on Easter Day and sometimes it is just a miserable cold game! The kids are all coming in tonight, plus two extras - it will be a loud, laughter filled, exhausting weekend! Even though they are grown we still dye the eggs and hide them, get up early before church to open baskets and of course, play whiffle ball! mostly though, we eat!
Diane - I admit it is very nice having a train station 2 miles from my door. You can take the commuter rail into NYC or the Amtrak wherever you want to go. The only problem is that Amtrak can be quite expensive and depending on when you buy your ticket it can cost anywhere from $30 - $85 to get to Boston. It takes almost the same amount of time to get there by train, maybe a few minutes quicker.
My town Is pretty small, I have lived in much much smaller though. We have about 10,000 people, only that doubles in the summer time! Because we are a "summer destination", we have a ton of restaurants and an inordinate amount of pizza places. We only have 1 Walmart though, and it isn't even a Super Walmart!
This morning I woke up to a bad surprise. My very old dog, Sean, for the first time since he was a puppy, peed in the house. Not just in the house, but in every room downstairs - luckily the whole downstairs has laminate flooring. I hope this is just a one time oops and not the beginnings of incontinence. It is so hard to be mad at such an old man, especially one with such big brown eyes.
Well, I have to get to work. I have to wash the floors again because I am still kind of grossed out! Then I have to start cooking, stuffed shells, cheese cake, chocolate chip cake, etc etc!
I will be crazy busy this weekend, I wish you all a happy happy weekend, filled with good weather and people you love!
Peace, Janet
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That is such good news!! I will keep you in my prayers!!
God Bless you -
Janet
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Hi everyone!
It is a grey yucky day here again. One day of sun just wasn't enough!! I have to head out now and battle the grocery store so I can start cooking for the crowd arriving tomorrow. I also have to stop at the bank, the train station (to buy my ticket for my first Boston appointment) and Marshall's ( to buy a small rolling suitcase for all these Boston excursions). then home again to unpack the groceries and off to Maundy Thursday service. I am exhausted just thinking about it. I would rather just stay home and play with my bird!
Eric, again, I am so sorry about the loss of your friend. I am sure you did a wonderful job with your eulogy. I have already planned out my memorial. I want it to be quite the party!!
Lillian, I have been following your recovery on Face book. I am so glad you are starting to feel better.
So, this Boston Clinical trial. Right now it is in the confusing stage, appointment making and then appointment changing and scheduling calling, research nurses calling, Drs calling! I think once I get started it will calm down and get into a routine! Right now I have to go to Boston on Monday just to sign the consent. (I will hitch a ride there on Easter evening with my kids and take the train back). Then I have to go back later in the month for Pre trial testing. Then I go back the following week for three days. The week after that for one day, the week after that for three days and then every other week for 5 months. phew! Everything has to be done there - the drug itself is Afatanib , a pill, that I take three days every two weeks.
The bad part is, depending on scheduling, I may not be able to go to Hope Summit. I will know more on Monday, hopefully.
My bird is getting a little tamer. He will eat out of my hand, but very skittishly! he does get mad however if I am not sitting right next to his cage and he squawks as loud as he can to let me know! I can't wait for him to be calm enough to come out of his cage and hang out with me.
Well, I better get to the stores before it gets later, not looking forward to it one bit!!
Have a wonderful day everyone -
Janet
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I am sorry I have been missing in action. I have been in a little funk for a few weeks, trying to decide what to do next with treatment, cold gray weather, bad cold - in general I kind of crawled in my own personal hole (with my bird of course) and stared at dumb tv and played words with friends for a week or two. But things are settling into place with treatment (I will be going to Boston for a trial with Dr. Lecia Sequist) and the sun is shining, the crocuses blooming and all my kids will be home in 2 days. I made it to another spring!
I hope you are all doing well, I checked and there hasn't been an air in a few days, I hope everyone is just out enjoying the coming of spring!
I was sorry to read that Eric lost his friend, he was an amazing survivor. Katie, your new puppy is adorable! And Michelle, I am glad yours is finally getting the hang of potty training!
Our neighbors have an Australian shepherd puppy. He keeps coming over to our yard wanting to play with our Golden. He waits at the stairs of the deck wagging his tail! The only problem is he is 1 and our boy is almost 13 and arthritic with bad hips! It is like a toddler wanting to play tag with great grandpa! It also reminds me of when my kids were little. The family that lived in the same house as the puppy had two little kids the same ages as mine. Only problem was they had no nap time, bedtime or supervision - so, like the puppy, they would stand on our steps and beg for my kids to come out to play at all hours!
I am going to go clean the kitchen, shop for some last minute Easter basket fillers (my son just informed me he is bringing home his roommate for the holiday) and then have a coffee with a good friend. Forcing myself out of my hole!
Peace
Janet
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Happy Monday everyone!!
I hope you all had wonderful weekends! We got another 8 inches of snow on Friday, but it is all gone already and the crocuses and daffodils are poking through the soil!!!!!!
SPRING!!!!!
Tomorrow we head up to Boston to speak with the Dr. there about possible clinical trials. We will take copious notes and then sit down with my Oncologist and go over all the options one more time before we decide. My onc. is very confident that, if I qualify, the Boston doc has a trial that would be good for me. So off we go! We plan to go to the appointment, do a tour of Fenway and then take our two kids who are in Boston out to dinner, It will be a long day, so Wednesday is already designated a pajama on the couch day!
My big news is that I GOT MY BIRD!!! He is only 2 1/2 months old and so sweet. He is slowly getting used to us, still doesn't want our hands in his cage, but gets mad at us when we ignore him! I named him Barker after my Grandfather. his name was Charles Barker Muth, but one Charlie in the house is enough! I seem to get nothing accomplished because I spend my whole day sitting with him! I am SO happy!
have a wonderful wonderful day everyone!!
Peace, Janet
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We DID train our dog with a bell! I do remember that part (plus we did crate him during the night). What we did was tie a cow bell to the back door knob and everytime the dog went out, we rang the bell. Then, everytime the dog had an accident, we threw the accident, or wet paper towels if it was pee, out the door and put the dog out at the same time, ringing the bell. He got really good at ringing the bell with his nose when he needed to go, problem was, he also learned that he got our attention when he rang the bell, so he took to just ringing it when he was bored! We finally had to take it away, so now, 12 1/2 years later, he still tells us he needs to go out by hitting the doorknob with his nose!
I really want a male bird, they tend to be more vocal, and cuter. The problem is that I want a young one also and you can't tell their sex when they are young without pricey DNA testing. So, I may end up with an older bird that has at least been tamed a little bit. There is a pound about 1 1/2 hours away that has two, if they are still there in the morning, I think we might drive out.
Michele, I think the same thing about marriage all the time. I have been married for 31 years, and it has not been easy but it is SO worth the effort it takes and people seem to have forgotten that.
Diane, my husband promises that the bathroom will be completed this weekend! Of course I do not believe him, he is forgetting the baseboard. We still have to buy it and paint it. He built this house 24 years ago and most of the rooms still don't have all their baseboard!
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Happy Friday everyone!!
Well, I went to bed and the grass was green, but I woke up to 7 inches of snow, and it is still falling! I have to say, it is beautiful, like a little last minute gift from God! Of course, it is beautiful as long as I have no where to go and we don't lose power! They are saying we will have a sunny weekend in the mid forties, so hopefully this is the last hurrah!
I called the farm this morning to tell them I wasn't feeling well enough to go and they said they had cancelled the Tiny Trotters program today anyway, it seems they got over a foot of snow there!
Hopefully my bird cage will arrive today, I want to start calling around to find a bird as soon as it does. Meanwhile I have been spending way too much time on you tube watching Cockatiel videos!
Well, back to work on the closets, seems like a good day for it, then maybe a butted popcorn and beer break this afternoon! Gosh knows I am not going out in that cold to the grocery store, so I think it will be leftovers for dinner tonight!
Have a wonderful day everyone!
Peace, Janet
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Happy Wednesday!
Well, we haven't gotten the storm they said we were getting, they have changed the start date to tonight. I am hoping they are completely wrong, I am tired of winter!
I have just finished a batch of soup. I have said on this forum before - I really, really dislike soup! However, our church has a Wednesday night soup supper every Wednesday of Lent and my husband, so kindly, signed me up to make one of this evenings soups! I made a big batch of Carmelized Butternut Squash soup, and if I do say so myself, for soup, it is yummy! The problem I have with soup really, is that it leaves me hungry. Like, that was a nice first course, where is the rest?!
last week I made Charlie bring to McDonald's afterwords! This week I am going to try to eat something filling before I go.
The rest of the day I plan to clean out the cupboards. I like to do that at least before each major holiday. With all the kids and their friends coming home for Easter I need to make sure I am organized.
I ordered my bird cage (much cheaper on-line) and it should be here Friday - then I will go searching for the bird! I am so excited, I have spent way too much time today watching Cockatiel you tube videos!
Lillian, if you are reading this, I hope you are feeling a little better. You are in my thoughts!
Have a great day everyone!
Janet
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Sorry I am coming in so late! Long morning at the farm meant kind of a slug afternoon.
Michelle, we are supposed to be getting snow tomorrow too. I am so over it!
Today was one of my farm days. For those who don't know, I volunteer on a rescue farm by helping to run a preschool program. The "Tiny Trotters" get a tour of the farm, feed and pet the animals, cuddle guinea pigs, do a craft, listen to a story and have a pony ride. I used to always be the person who took them on the tour, but I haven't done that since I started chemo last July. Well the new tour guide wasnt there today so I had to do it - I think it was way too much for the "new me". I am totally wiped out. I have kind of sunk into the couch, and I don't think I will be making dinner tonight! It WAS nice though!
Hope you all had wonderful days!
Janet
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Happy Monday!
Diane, I am so glad that you are feeling better, I swear Spring will do us all a world of good! As for your doctor, I don't have an answer as to why he didn't give you the treatments you found. I do think we have to always ask a lot of questions, do our own researching and be our own best advocates. My Onc always makes me feel like I am the only patient he has, so I have to remind myself that I am one of many, many he has seen that day. I always go with a list of exactly what I want to discuss and any questions I have so I make sure we hit it all.
Lily - good luck with your surgery!
I slept in until noon today. I felt like a slug when my husband came home for lunch (he works 2 miles away and comes home everyday for lunch) and I was in my pajamas eating breakfast! Then he reminded me that I was up several times in the night AND I have cancer, so it is ok!
He gave in to the Cockatiel!!! (My sister promising to take it when I die clinched the deal!) I ordered a cage yesterday, it should arrive this week, then I just have to find the bird! I am so excited, like a kid at Christmas!
My other personal exciting news is that my daughter that is just finishing up her third year of medical school got into the Masters of Public Health program at Harvard! It is a one year degree program that she will do next year in between her third and fourth year of Med. School. The best part of this news is that for a whole year all three of my children will be in Boston! It is an easy 2 hour drive or train ride and I can see all 3 at once! Now I just have to stay healthy enough to enjoy it!
No plans this week besides the farm. I do want to get some long term projects worked on (organizing mostly), start shopping for Easter, and oh! Buy some toys for my new Cockatiel!
Happy Day everyone
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Happy Thursday everyone!! (It IS Thursday, right? hard to keep track when being a couch potato!)
I think spring is trying it's hardest to show up today. Yesterday sleet and ice, today blue skies and in the 40's! I am so ready for nice weather! I think it will be so much easier to feel like a slug in the sunshine than in the cold dark house!
I woke up feeling well today
and made a long grocery list and planned a day full of activity, but just doing that took all of my energy! Maybe I will vacumn a room or two and call it a day! A friend gave me the first season of Call the Midwife, a PBS series. She loves it and wants to watch the second season together (same friend I watched Downton Abbey with). The second season starts the end of March, so maybe I will watch an episode or two today. Husband hasn't given in to the cockatiel yet, But a friend gave me a cage she had, so I am ready when he does
I hope you are all having good days! Claire, I am so glad you are joining in! Welcome!!
Peace
Janet
I must have posted this at the exact time as Diane! so, I tried to delete mine and couldn't figure out how to do anything but edit it,therefore the "oops" topic above! Diane I am SO glad your scans were stable!!! I am so happy for you that they moved them up so you could cross that worry off, it is hard to be sick and not think it is the cancer. Now just feel better!!
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Oops
in JUST FOR FUN
I started an air at the same time as Diane! I deleted and added on to hers! didn't know how to get rid of the post all together?
Janet
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Ok, so this is how you can tell how out of sorts I have been feeling, I posted yesterday (Tuesday) under Monday's Air, completely believing I was on the right day.
I need spring time. Today it is cold and grey and VERY windy, with a nice mix of rain/sleet. Needless to say I am still in my pajamas on the couch. I AM holding my very cute guinea pig, Possum, who makes me feel better just by being cute and warm!
I am campaigning for a cockatiel now. My husband is not convinced. And, since cockatiels have a life expectancy of 30 years and I do not
, I have to include him in the decision! We fostered one when we were first married and loved him, but we have had cats ever since. No more cats, I think I need a bird! Tonight is the Lenten soup supper at church, so at some point I will have to find the energy to shower and get dressed. unlike many of you, I really dislike soup! But, the company is good and I need to force myself off this couch once in a while!
I hope you are all having good days!
Peace
Janet
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Bruce, I LOVE this news!! I have missed you here and was hoping you were enjoying life on the farm!
This news made my day!!
Peace
Janet
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Scan results
in HOPE
WHOO HOO!!!!!
That is wonderful news!!!
Do something fun to celebrate!!
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Jody - it all happened very quickley for me also, one minute I was at the doctor's with a sore back, the next I was in the ER being told I had stage 4 lung cancer. That doctor also told me I was terminal and would not live to see another year. That was 6 years ago!
Keep a positive attitude, get other opinions, just to be sure and keep coming here to ask questions and let us know how you are doing!
peace
Janet
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Good afternoon friends!!
It is 34 out today, but the wind off the Long Island Sound is making it feel much colder. I am bundled up under a quilt and trying to stay cozy!
I have had a very nice day so far. It is my birthday and I have gotten two flower deliveries which were both nice surprises, two of my kids have called so far and my favorite 5 year old (the son of a good friend who I consider my honorary grandchild) skyped me for over an hour. I learned ALOT about birds and dinosaurs, his two favorite things, in that conversation!
Tonight my husband is taking me out to dinner, so I am not eating all day. My appetite is horrible and I want to be hungry enough to enjoy the meal!
I guess the rest of the day I will spend finishing my book, maybe crocheting a bit, all huddled under this quilt!
Have a wonderful day everyone - stop on in "the air" and let us know how your day is going!
Peace
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LOVE that news!!
WHOO HOO!!!!!
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Well, it is 2:00 and I am still in my pajamas! I guess a full day at the cancer center did me in!
In a little while I will go get dressed and start my day, in the meantime I have done nothing but play Words With Friends and watch mindless t.v.
Tonight we will go to our church's Lenten Soup Supper. We have these every Wednesday of Lent. Soup and bread for supper, a learning hour and then a short service. it is a very pleasant evening, except the soup part! I really don't like soup. really. And if it is a soup I can tolerate , I am still hungry when I am done! I guess that is part of the point, but I break the rules by stopping at McDonalds on the way home!
It is "Love Your Pet Day"! I am down to only two pets now, but I shall spend the day giving them extra love! I have a beautiful, although very grey, 12 1/2 year old Golden Retriever named Sean. Sean is my best friend and my best caregiver! If I thought they would let a dog win I would have nominated him for LUNGevity's caregiver contest! He is going down hill quickly which makes me very sad, I don't know what I will do without him. My other pet is an adorable guinea pig named Possum. The farm I volunteer at has 18 female guinea pigs they use for programs with children's groups. Then they rescued Possum, only Possum turned out to be a male. One male guinea pig with 18 females would cause a disastrous population explosion, so Possum came to live with me! What, if any, pets do you guys have?
Spend the day loving them!
Janet
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I had my scans yesterday and again everything has grown. Tiny amounts of growth, but growth for the third scan in a row. (Spots on my lungs, lymph nodes, spine, ribs, and spleen ) My spots are all small, all but one are considered unmeasurable - but they are there and more keep showing up, so it is time for a new plan.
My doctor discussed several options with me
1. Stay on Tarceva and Avastin and continue as is, keeping a close watch on things
2. Start chemotherapy again, this time either Gemcitabine, Vinorelbine or Abraxane
3. Go on a clinical trial. Unfortunately the trials he thinks are best for me here at Yale (immunotherapy) are not open at this time, There would be at least a 6-8 week wait, during which I would continue on Tarceva and Avastin
4. Go to Boston to speak with a doctor there who is working on trials that sound promising for me. I looked her up on-line and Lo and Behold she is on the LUNGevity Scientific AdvisoryBoard!
So, my plan is to take a trip to Boston (if she agrees to see me!) and see what she has to offer, go back to my Oncologist and rediscuss the options and move on from there. Having choices is a good thing, thank God for research dollars!
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Thanks for opening the "Air" Lillian! I am concerned about your neighbor also, keep us posted. And, when you go to the doctor for your leg, tell him it bothers you to lie flat, maybe something can be done about it. I have learned to be gently demanding in what I need!
Eric, you always tell the best stories! That must have been quite e excitement for those kids at the police station!
For Alan and everyone else, if you have never had a hot buttered rum on a cold winter day (preferably in front of a warm fire). I highly recommend you add it to your bucket list!! Yummy, and it warms the tummy!
I am once again spending the whole day at my cancer center. I had to be here at 11:30 to have my port accessed for a 1:00 CT scan. I have an appointment with my Onc at 4:15 and then a meeting of the Patient Advisory Committee at 5:00.
My daughter was home for a visit and came to my scan with me, but had to head back to school in NYC so between the CT and now I ran her over to the train station. It is pouring rain out, horrible day out there! it IS warmer though, about 5 degrees, so hopefully this rain will help get rid of all the snow.
I think I will spend the rest of the wait crocheting, I have to finish this one sweater before Lillian finishes several blankets!
Unfortunately I am having a terrible craving for a hot pretzel. maybe at the Patient Advisory meeting I will suggest they sell those in the cafeteria!
Peace
Janet
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Claire
Just to add to what Lillian explained, the " Just for Fun Forum". Is just that, just for fun. It is a place to post silly stories, jokes, start a fun word game, etc. The "Air" is just a spot in that forum where we keep in touch and get to know each other. It is just a casual conversation each day. We "air" our joys, concerns, talk about the weather, our kids, dogs etc. Whoever shows up first each day can start the "air". Just hit "new topic" and go for it! If you have a joke or word game you can post that under this forum also. This is just the casual, fun forum. A little less serious, a little more bonding!
All are welcome!!!!!
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Happy President's Day!
It was SO nice to have so many people pop into Saturday's Air !!
Lillian - Pokeno, Ice cream Social, Wii Bowling and what is it ?2 afghans and 5 quilts?! Phew! You are the energizer bunny! I have been working on the same crocheted baby sweater for over a month now!
Michelle- I am sorry to hear about the problem with Sampson's training. I have no ideas for you as my Sean is almost 13 years old and I can't remember that far back! I do think that I had it easier because we got him and trained him in the summer. Sampson is a smart breed, he will get it!
Twana- I agree with you, I think the spammers do keep us away. but please stop in and just write a bit once in a while! I do think that when "the Air" is busy it extends to the whole site!
Mike- Thanks for turning out the lights!!
My middle daughter, Lauren, is home for a few days! She just took the first of her medical boards and has a momentary sense of freedom! Today we are headed up to the farm to visit with the animals, then do a bit of shopping and possibly stop into an Inn for a Hot Buttered Rum. It is only 26 here today and very windy, so after the farm we will be frozen.
Tomorrow she will come with me to my CT scan. (Didn't I just have one of those.?!! I have sunk back down to the every 6 week schedule
)Have an amazing day everyone!
"What day is it?" asked Pooh
"It's today." squeaked Piglet
"My favorite day!" said Pooh
Peace
Janet
and made a long grocery list and planned a day full of activity, but just doing that took all of my energy! Maybe I will vacumn a room or two and call it a day! A friend gave me the first season of Call the Midwife, a PBS series. She loves it and wants to watch the second season together (same friend I watched Downton Abbey with). The second season starts the end of March, so maybe I will watch an episode or two today. 
Thursday's Air
in JUST FOR FUN
Posted
Good afternoon everyone!
It is cold (59) and grey out today. In a little bit I have to leave for the farm to do a tour for an after school program, I wish the weather was nicer for them. Fingers crossed that it doesn't start raining.
My bird got out again yesterday. I think the whole time he is loose he is laughing at me. I have a bird house on my mantle and he spent most of the day sitting on it staring down at me! He was out for over 5 hours, before I finally convinced him to go back into his cage. If he wasn't so cute, I would be furious!
Katie, your puppy was so cute before, but so, so adorable with that huge cast on! Poor baby, you must just want to cuddle it (him?her?) all the time. I hope your daughter isn't feeling too bad about it, accidents happen.
Eric, what a day you have planned!! One of those activities alone would do me in for the day! I think with all that activity you can go ahead and enjoy your high calorie McDonalds!
I went in for all my pretrial testing on Tuesday. I should find out tomorrow if I was accepted. It was a very long day. I had support group the night before until 7:30 so instead of driving all the way home (1 hour). I spent the night at my sister's (15 mins.) I had to be back at the hospital at 7:30 am and was there until 6:30 pm. Of course it was a beautiful sunny day in the high 70s and I was stuck in the hospital. There is a beautiful rooftop Healing Garden with a stream running through it though and I went out there, claimed a bench and fell asleep in the sun between tests.
I am SO ready for summer!
Hope you are all just super busy living, but stop on by and let us know you are ok!