Sunday, August 31, 2008

Finally

I have been working with the oncologist's office to try and get Brian's appointment with Sloan Kettering. I called them on Thursday to find out that they had gotten a phone call from our insurance company that denied the consults to NYC. I was livid. The insurance company is based out of Albany and said Albany or nothing. But we have had such bad times at Albany, they messed up bad with both Bri's father and Em that I don't want to go there again.
So, I called the insurance company, knowing that they had an appeal process and that I needed to get it started. In the mean time, we contacted our local state based medical coverage and got Brian placed on that. So, after talking to the insurance company, I came home and was hanging out with Em. The doctor's office called and suddenly they approved a consult with the surgeon and the pathologist in NYC! It pays to complain.
So, I called the doctor's office here and told them that I really wanted to have an appointment on my calander before the holiday weekend. They told me that it may not be scheduled until Tuesday, but they'd try. A little later I got a call back that we had to be at the Rockefeller Plaza center at 8:30 Tuesday morning!
I scrambled to get all the papers we need, the scans and everything else as every one is closed on Monday for the holiday. I have to work Monday and Mom and Dad are away until Tuesday. Brian's mother is going to take Em over night on Monday and all day Tuesday. Brian and I found a cheap hotel 3 blocks from where we need to be. We are leaving as soon as I get home from work and get packed.
I'll let everyone know what happened Tuesday night or Wednesday night.

Wednesday, August 27, 2008

Emily came to work.

We had hired a new sitter and she started yesterday. However, she has had a family tragedy. Her 16 year old neice was dropped off at work, in the parking lot and never made it inside. No one has seen her since. Okay, it could be a boyfriend but there is still the possiblity of abduction. So, the sitter closed today. So, Brian, having the more flexible job, stayed home with Em today.
Brian also had the second of his tests today. So, the deal was this.
1) I programed the stove this morning. It's a great feature that I can set the timer to turn the oven onto a predetermined temp at a certain time and it will turn its self off after how ever long I set it.
2) Brian and Emily needed to go to the grocery store. Better him than me.
3) Brian needed to get the chicken ready for dinner and put it in oven before he left.
4) Bring Emily to me at work so that he could go to his test.
So all this went well, but my day was non stop. It often is anymore and it's getting so bad, I'm not getting enough stuff done in one week let alone a day. So, when Em got there we were wrapping up a few meetings that were using our space, I had the oxygen company there for a resident who is in the hospital and coming back on Hospice, dealing with a medication pass, residents who need attention, a cranky husband, a cranky boss, a cranky chef (notice the pattern that all the men in my day where being cranky?), staff that wanted to complain about things and Emily.
God, love Emily. She's very social at my office, often chatting up with the residents, a few of them absolutly loving to talk to her.
My boss was fine and very understanding about Em needing to be with me at work today. That wasn't a problem. My biggest problem was that Emily wanted to sit and talk to all the staff and we had so much going on. I left her at my desk with her movie that Brian brought in my computer. But here's the thing. I tol my boss who was at his desk behind mine, that if she needed me where I was going to be. But at the same time, I don't feel that it's right to ask your boss, your co workers or anyone else at work to watch your child when you are the one with the day care problem. I wouldn't accept it as behavior if any of my employee's bring in their children for a short time and expect me to watch them so they could work.
That's one of the great things about my job however. If there is an emergency, something happens, they aren't really anal about you bringing in your children for a short time. I mean all day is something else, but for an hour or something is okay. As long as you can still work. And Em is old enough to keep herself mostly occupied.
I'm just ranting I guess and I'm sorry you all had to read it, if you are indeed still reading. I'm just so stressed I don't know what to do.
Work is getting really really busy and my head is so filled with other things going on, I am only giving about 80%.
Then there is Brian and Emily and worrying about what is going to happen in the coming weeks.
The family is calling almost daily. And I understand why they are. But at the same time, it's getting to the point where I don't even want to look at the phone any more. There are times that we just want a quiet night at home with my husband and daughter.
But Em is so lost without school. I can't wait for her routine to start again. Thank God it's only next week.
Good. Now my day is complete. Emily is mad at me. I won't go downstairs and get her strawberries for a second bedtime snack. Since she's been with me she has had to eat:
watermelon, strawberries, tomatoes, 4 pieces of gum, chicken, potatoes, peas, an apple, cookies. Plus, I know Daddy gave her a happy meal for lunch. But now she want's more to eat and I said no. Therefore, I am:
MEAN!
Oh well.

Monday, August 25, 2008

The Fair

Around here, the last month of the summer is dedicated to county fairs. There are two big ones around here, the Ulster County fair and the Dutchess County Fair. We live in Ulster county and never go to the fair. It's small, cheesy and dull. It's the Dutchess Fair that makes the grade. So, Brian thinks it'll be fun to go this past weekend. He wanted to go after he and I both got done with work on Saturday. Oh, hell no. I said why don't we call his sister and go on Sunday. So that's the plan.

We packed a picinic and met Chris, John and the boys at a local riverside park. We decided to go to the fair after we had lunch. It was about a total six or seven mile drive. It took over an hour. It was the last day of the fair. We were parked so far away, we had to walk twenty minutes to get to the gate.

So, first we saw the animals. The cows, the horses, the sheep, the goats. They stank, but Emily and Adien loved it. Then we moved onto the kids climbing all over the tractors. That was fun. BUt it was the rides the kids wanted. Over and over again for the rides. So, we spent $20 on tickets for the rides and only got 20 tickets. Each ride was 3-4 tickets. So, the rides went fast. Then onto snacks, bathrooms, walk around and suddenly we had been there for four almost five hours and we, the adults were tired. So, we left, but the kids could only complain about how far it was back to the cars. But it was a fun day.

Thursday, August 21, 2008

Dizzy Girl

We were at my parents, playing with the new camper tonight. Emily wanted to play on her tire swing for a while. Her favorite thing is to spin around and around, but tonight she put a different "twist" on it. She pulled one of her legs up into the well of the tire and had the other on the ground. She put her head down on the tire so that her forehead was resting on the sidewall. She spun herself around and around and around and around (even writing about it I'm getting dizzy). So, you get the idea. We told her it was time to go and to come and give Nana and Epa a kiss goodbye. She got off she swing and we all thought she was going to stagger. Nope! She walked in a straight line and right up the stairs and onto the porch with out a single problem! She could more than likely pass a field sobriety test without batting an eye.

Okay

So, we saw the oncologist this morning. It's a tumor. (insert Brian's BAD impression of Arnold Schwartzengger from Kindergarten Cop). Specifically it's called a neuroedocrine tumor related to the pancreas. Okay. So here's the deal.
1) We are still not sure if it's cancerous. We won't know for a while.
2) The tumor HAS to come out and we are going to be heading to Sloan Kettering Hospital in NYC, the best cancer hospital on the east coast.
3) Brian is going to do more testing on an outpatient level next week, to determine if there is any other tumors that might have been missed by regular CT's or anything else concerning.
We need to wait for the insurance company (damn HMO's) to give us the go ahead to head to NYC and see the surgeon. It's still a bit of a waiting game, but it's better than it was. We at least know now what kind of tumor it is. It's a rare tumor, but not unheard of. Check out Memorial Sloan Kettering Hospital's website for further information on the tumor.
Brian and I thank all of you who have been praying and thinking of us. We appericate the love and concern.
Kisses and Hugs from us.
We'll keep you posted.

Wednesday, August 20, 2008

Waiting

Tomorrow is the appointment with the oncologist. It's just going to be a long night, waiting to hear what this mass is.
Yesterday, Brian's rash that we thought was possibly an allergic reaction to the antibiotics, got worse. So, we went to the doctor and she gave him some Prednisone to help the rash go away faster. It's working.
We heard from Brian's father tonight about his appointment for his cancer today. It is contained in just the prostate, but it's advanced. The treatment is going to be hormone replacement therapy both oral and injectible for about three months then radiation therapy. He will need somewhere between 40-45 treatments and then he'll have to remain on the hormone replacements for up to 2 years. But the good news is it hasn't spread.
So, now we know about that.
More news tomorrow when we know

Saturday, August 16, 2008

Day at home

Today is Brian's first full day at home and he couldn't be happier. He's been complaining of some back pain but we think that because of the site from the biposy, he didn't sleep in his normal position. So, we are hoping it's nothing more that discomfort from sleeping.
Emily is so happy to have Daddy home and she so cautious about touching him. They usually wrestle and so on, but we've been trying to explain to her that she needs to be gentle with Daddy.
He's upstairs resting right now.
Jeane was asking about the fact that the mass was dying on the inside and as far as I know, that's neither a good thing or a bad thing. As masses grow, as they get too large for the blood supply that is feeding them, they begin to die in the middle. That doesn't mean anything other than the mass has been growing.
I'm just waiting on pins and needles. The oncologst stated to us that it could be several different things, including cancer. My question, is if it is not cancer then what the hell is it?
EMily is done with summer school now and will be going to the sitter next week and I will be going back to work Monday. There is no use me sitting at home and waiting to see what happens. At least I can be productive.
I would love to call all of you, but, phone numbers are helpful. Home for us is 845-338-0258 and my cell is 845-430-5004.

Friday, August 15, 2008

Home at last

Brian had his biopsy today. It was scheduled for 2:30 and it wasn't that far off when he went in. They gave him some Ativan on the floor first and a bag of Lactated Ringers for fluid. He wasn't allowed to eat after breakfast and that was hard. The Interventional Radiologist explained what he was going to do and it was going to take up to an hour.
Basically, they went in with a long needle from his front, navagting around the intestines and were to take core samples of the outer egde of the mass. The inside of the mass was dying and my impression of that news meant that it had been there a while. The radilogist stated that it was normal for any kind of mass to be necrotic on the inside and live on the outside.
When he was all done , he hurried as best he could as the only other hospital in the area lost the use of their CT scanner and they were sending almost all the patients to Benedictine where we were. IT was very busy.
He came out to see me after the procedure and explained that he was only able to get two core samples, as the mass had a lot of vasularity to it and was starting to bleed more than he liked. There is a hematoma around the mass now. That is basically a large blood pocket. The body should absorb it back.
We have an appointment with the onoclogist on Thursday morning. Emily is thrilled to have Daddy home.
So, we are going to take it easy tomorrow and Sunday and we will see from there.
Thank you all for the thoughts and prayers.

Thursday, August 14, 2008

Update

Today we waited. For hours. The onocolgist finally came in are ound 7:30, talked to us, did an exam and then talked some more.
At this time, he's not sure what it is. He's not even really sure that it's attached to the kidney in any other way. They did find a small kidney stone, possibly the cause of the bleeding. It's smaller than a pencil point. He also told us that in looking at the mass, the center of it seems dead, not as "healthy" as the outside.
He won't say that it's not cancer, but he won't say that it is either. So, Bri is still inpatient at the hospital as they want a biopsy. But because of the location, near all the major blood vessels of the kidney region and behind the intestines, it needs to be a very specific needle biopsy guided by CT. Then we can come home. And wait for the results.
The bloody urine has cleared up.
Brian seems to be holding up well. It's been a long day with lots of visitors.
I'm tired. I've been at the hospital for over 12 hours, waiting for the doctor. It's almost too much to take in right now.
Emily over heard us talking about the needle and is very upset that Daddy needs to have a needle. She also over heard about the kidney stone and we told her that Daddy needs to keep his mouth closed when mowing the lawn at work so he doesn't swallow any more rocks!
Brian had the best line of the night, however. We were talking about his mass and Brian has the habit of farting, alot. Not plesant stuff either. I often kid him that something crawled up his butt and died. So, he thought that this mass is whatever did crawl up his butt and died. Now we will get to see what it is.

Wednesday, August 13, 2008

The other shoe just dropped.

Two or three days ago, Brian's father was diagnosed with prostate cancer. Okay. That was hard. But today was harder.
Brian called me around lunch time to tell me that he was peeing blood. So, we went to the ER thinking he either had a UTI or a kidney stone. They ran some tests. No, UTI, just blood in the urine. The blood work came back normal. So they did a CT of the renal area.
They found a mass about 8 cm (a bit bigger than a golf ball). It's sitting near or on, the right kidney causing the bleeding. But, here's the kicker. It's showing up on the CT as lymphanona, a type of cancer.
He's at the hospital right now, and I am home. Em's at my parents. We are meeting with the oncologist tomorrow to see if it is really cancer and what the next step is.
I spoke to the doctor on call this evening and he told me that the follow up scans they did tonight show a) Brian does have a brain in his head, contrary to popular belief, b) that there seems to be no other masses or problems to be concerned with.
So, now we wait. Then we should know what the next step is.
I'll keep you all informed, but you all have my numbers.

Tuesday, August 12, 2008

Our Cottage

Long story short, we have come into the possesion of a camper. Well, it should be in my drive way by bed time tomorrow. It sleeps three, has a kitchenish thing and a bathroom type cubby. But I can't wait to get to use it! We got it from one of my Jersey cousins and they are NASCAR fans (for those of you who don't know, NASCAR stands for Non Athletic Sport For Caucasian American Rednecks.) We have inherited all kinds of NASCAR things to go with it. Yeah! My favorite sport! Watching cars go round and round. It's call traffic. Why would I want to watch it? And isn't it a pre requset that if you watch Nascar you must eat beef jerky, drink Busch and listen to country music?
We eat pizza, drink local brewed beer or Sam and listen to Alternarock or Metal.
We went to my sister in laws a week ago to hang out. We, Brian, his two sisters, their husbands and the odd brother in law were all sitting on the patio, drinking, and listening to music. You have to hear the choices:
Little Sis's Ipod:
Madonna, Black Eyed Peas, Hootie and the BlowFish, and other assorted crap.
Odd Brother in Law's Ipod:
R&B, Hip Hop, Easy Listening
Finally after about three hours of crap we pulled out the oldest brother in law's Ipod:
Metallica, Ozzy, Sabbath, and some other interesting stuff that his teenage students gave him. It was like heavan to my ears. But, I couldn't wait to get home and listen to my own stuff.
I bought a new MP3 player over the weekend, 4gb and loaded it with about 1/2 of my music... 434 songs.... only 1/2 of what I have. But, now I can listen to :
Blue October, Muse, Fall Out BOy, Queen, etc...
No, Hannah Monatana on my player.... Em's little pink one on the other hand...

Thursday, August 7, 2008

TV adds how many pounds?!

I have been working at a new job for about 10 months. A small start up with two young men who opened an assisted living facility. I am the head of nursing. It's fun and rough at the same time.
Friday's is Happy Hour night (whoo hoo!), but generally, I am not there. But tomorrow night the guys want me to work, because of a a lot of reasons. Happy hour is real popular with families and I don't get to see the families often. We are hosting an art show. And we are shooting our television commercial!. Ihate having my picture taken and I am not looking foward to having myself on camera, but as the only nurse....
Here's my delima. I am in need of a hair cut, but I can't get in. My roots are feet long. And I can't figure out what I'm going to wear!
This is not how I wanted to make my television premier. I was thinking something along the lines of being 75 pounds lighter, and in a make out scene with any one of the following....
Jonathan Rhys Meyers

Johnny Depp

Tuesday, August 5, 2008

Music

I've been stuck on this music kick. I rediscovered a bunch of bands that I had forgotten about. So, instead of watching my boat load of Tivo that I need to catch up, Ive been listening to my computer and the music I have downloaded and just had laying around.

Well, I don't have XM or other fancy radios. I was listening to AOL music the other night and I realized that they play like the same 50 songs over and over again. It's been cool because I founf some catchy things and a few that I don't ever want to hear again. But I was working on updating my mp3 player and no, I do not own an Ipod or will I ever by one. As much as I would love to have an Apple, I hate being locked into using Itunes. I have tried it and I'm just too confused. WMP all the way.

But this is the story I need to share. A while back my father had bought himself his first digital music player. Nothing too exciting. Now, my father is the one I had always gone to for tech advice in the past, but he called me that he was having problems syncing up to his player. I went through the basics over the phone and he was still having problems. I went to the house the next day and within about five minutes I had the whole thing fixed. He had forgotten a few things, like formatting the hard drive on the player first. Oh, well.

It's just really weird to be at the point where I understand the majority of technology better than my father. Setting up a Bluetooth? Beyond him. Now at work I am the one that the majority of the staff comes to for tech advice. They bring me cell phones, computers, mp3s the works. They don't go to the owner who's fiancee has a masters in computer programing and works for BLue Sky ( Fox's animation studio that just made Horton Hears a Who and Simpsons). They come to me. Sometimes, it's easy to figure out what the issue is. Sometimes it's more. Beyond me. My bluetooth broke and I've been having issues trying to figure it out. I asked my boss, the one with the bluetooth and the fiancee, but he told me that he had no idea and that he didn't even know how to do much more than turn it on and off. He had to have the fiancee sync his up. That was amazing to me. I can do that. But... then again, I have cousins who can help me with the web stuff that I can't understand.

Sunday, August 3, 2008

Nothing really to say

I'm in this odd space in my head right now. I told you I read... alot. I got this new book yesterday morning and I read it. Cover to cover. About 10 hours total. 760 pages. It was the last in a series of four that I really really love. It's just this story that sucks me in and I feel like I'm really living it. That's hard for me. Because now that it's done, not just the book but the series, I feel really odd. I keep replaying different sections of the series over and over again in my head. It's really killing me. I want to almost crawl inside the book and be part of it.
But when I get like this and trust me it has happened before, I crawl inside my own writing. It's just hard to really paint what I see in my head on the paper, well really the monitor. All I want to do is pour out what I see in my head. Nothing else. No food, no work, no sleep. Just type until I can't rub out the hand cramps and my fingers ache. But then I still don't feel sated. Just empty.
Right now, I have been working on my white whale. That story that I have been mulling around for the last twenty years. But, when I read it back over, I feel that I haven't gotten it quite right. That it's really stupid.
My sister in law has read a few of my novellas. One of them made her cry and she always tells me she likes them. But I can't tell if she's just saying that because she's my sister in law or if it's true. Then I re read them and I think that it's all trash. Not good fiction. Just fiction. Like a kid writing.
Even a monkey could get lucky and type Shakespeer. But I don't know. I'm feeling a little off. Empty. I hate getting sucked into a good book afterwards. I feel like the world I became so engrossed in has left me.
It sucks.
So, in a few days, it'll lessen and I'll be better. Until I pick the series for the seventh or so time. I'm serious. I've read them each that many times, except the one I got yesterday.
If you can put aside your thoughts on Vampires, werewolves and the supernatural and you want a good love story, check out the Twilight Series by Stephenie Meyer.
www.stepheniemeyer.com
If you like good music, go into the twilight section, pick either Twilight, New Moon or Eclipse and click on the play lists. You can listen to the sound tracks for the books. It's awesome.
One last thing... for that love song that you just want to cry over....
you tube... type in blue october my never. Listen to the words. It's soooooooo good.
Hey Josh, how do I put up a you tube in my blog?

Saturday, August 2, 2008

Seven more things...

Well, I come to find out, after reading some more blogs, I was tagged by my cousin Jeremy to post seven interesting things about myself, and you know what, I think I could do it again. Let's see what happens.
1) I have been to 45/50 US States. I missed Washington, Mississippi, Lousiana, Haiiwi and Alsaka. My parents have dragged me, kicking and screaming at times, to most of the other 45. But in all the beauty I have seen, all the places I have been, my heart belongs to the Northeast. New England. I love it. So close to NYC, Boston... nothing like it in the world.
2) On my mother's side on the family I am the oldest and on my father's I am dead center in the middle. I have a total of one sister ( to whom I do not speak) and 12 first cousins, not including spouses or their children. And let's not even get into the fact Brian has two sisters and 13 cousins who all are either married or have children. It's a BIG family when I really look at it.
3) I read. A lot. I can put away a typical novel in about 48 hours, averaging in work and family time. I was once clocked at 650 words per minute with 99% comprehension. I almost always have a book in my hand or purse.
4) I love to write. I don't know that I'm very good, but I have finished about 1/2 a dozen novellas. About 75-100 pages on word. But there is a white whale out there for me. A basic premise of a story that I have been working on and off since I was about 14 years old. I can't get it to work just right. Then I get happy with the delete button.....
5) The only two guys I had dated in junior high / high school are now both gay and married to men. Kill my ego!
6) I am allergic to metal. Unless it's silver, gold or titanium, I break out from it. No cheap earring for me.
7) I hate animals. I really just don't like them. I can't see the point of a pet. What kind of contribution do they make to the household other than sucking away money. Food, vet, toys.... at least a child can do chores. But there is no point in a fish. Granted, I understand the idea that some animals can and do have medical benifits, such as petting a dog for lower blood pressure. And I do not lump serivce animals into this catagory. Seeing eye dogs, horses or cows on a farm are something different. But honestly, what is the point of a cat? Messy, smelly and pains in the ass.

7 interesting things about me?

My cousin Court tagged me to list seven interesting things about myself. Wow, only seven? Only kidding.
1) I am a nurse. I failed math and most sciences in high school. I went college and wanted to teach 20 century european history with a concentration on the Bolshivek revolution in 1917 Russia. I have this thing about the Romanovs.
2) I love things vampire related. I love to read books about Vampires. I have read ALL of the Anne Rice novels. I have read the entire Twilight series. Sookie Stackhouse. Blood Ties. All the big vampire books.
3) For a while I was in a Wiccan coven. It was cool. The worship of nature. I can read Tarot cards.
4) I have been tattooed six times and have five tattoos. But being a professional they are all in places that I can show like a piece of jewlery.
5) I would love to live in England. Never been there but I have been an Anglofile forever.
6) I thought at one time I wanted to be an archeologist. I have a distant cousin who teaches Eygptology. But after one class in Biblical archeology I was bored to tears.
7) I play the piano. Not well. I had taken lessons from the age of 4 until I was in my 20's. Right now I'm teaching myself Clocks by Coldplay. I love music. Some of my favorite bands as as follows: Queen, the Beatles, The Who, Travis, Blue October, Muse, Linkin Park, Coldplay, Steely Dan, Pink Floyd, John Mellencamp, Heart, Daughtry, Fall Out Boy.

Last night, there was a new book released with almost as much hype as Harry Potter. It's by a woman named Stephenie Meyers. She's from Mesa, Az and wrote the Twilight series. She did a webcast with the lead singer of Blue October, Justin Furstenfield. It was great. I hadn't listened to Blue October in a while and I forgot how wonderful they are. I added a video bar. Hit the one on the top and let me know if you just love the song as much as I do.