Tuesday, September 30, 2008

Busy, Busy, Busy

Well, we've been home a week and I haven't stopped. Brian is doing well. Our friends from Long Island came up for the weekend and I haven't stopped working. Things have been very busy.
I took Bri's staples out on Sunday and he is feeling lots better. We are going to the doctor on Tuesday next week to see how he's really doing.
Other than that there is nothing going on here. Emily is doing well in school and starts Brownies on Thursday.

Wednesday, September 24, 2008

Home

We came home last night. It's strange to sleep in the same bed again. I needed to take today off from work to get a few things done, but so far, all I have done is taken Emily to day care and cleared the Tivo.
Brian is doing okay, sleeping a lot. I didn't sleep well last night and I have been trying to rest. I slept wrong and my neck hurts... again. That's where all my stress has been going.
We had my mother not tell Em that we were coming home last night. We met up for dinner and she was wary at first. We showed her Daddy's incision. She knows that it's sore and not to touch Daddy's belly.
We had wanted Brian to sleep in Em's room for the first couple of days. Her bed is higher and has a lot of places to prop up pillows. But, Em had a fit. It was her room. Boys would comtaninate the Princess things and it was her beautiful room. This all from a child who never wants to be in her own room.
So... here are some things I wanted to blog about my experince in NYC.

Miracle House:
I needed a place to stay, so I found this organization that rented bedrooms in a high rise apartment building on the West side. Hell's Kitchen. It was great. The apartment was huge, three bedrooms. It was $50 a night. They offered breakfast every morning and dinner three nights a week. They did the sheets and towels and a deep cleaning weekly. You had to buy your own perishibles. There was a gym in the building and a 24 hour door man. I felt really safe. And the view was to die for. All in all it was a great experince.

Sloan Kettering:
I have nothing but wonderful things to talk about Sloan. The nurses were fantastic, however, the patient... :). I've never seen anything like this place. BUt they did great for us.

First Ave:
My mother in law and I were crossing First Ave the other day. The UN is at the south end of First Ave. Suddenly, as we are about to cross, up comes 2 NYPD cars, lights and sirens, a big black limo, a black SUV with secret service hanging and I mean hanging out the windows, a second black suv with guys all in black flack jackets, helmets and semi automatic rifiles out the windows. My mother in law and I looked at each other and realized we had just seen George W. drive by!

Other Celebs:
I was standing out in front of the hospital the other day and saw Paulie from the Sopranos. Also one of the families staying in the apartment, the son is the sound guy from Edgar Winters'.

All in all it was kinda cool being in NY for a week, under the circumstances and all, but I am so glad to be home.

Monday, September 22, 2008

Monday

Brian is doing well. The O2 is off, the IV is out, he is wearing street clothes. The stomach is very distended still and he is uncomfortable.

He called me at 7 this morning to ask me where I was. I told him I was still in bed sleeping and that I wasn't getting up yet. He wanted me to come over ASAP.

They were allowing him to eat solid food today and he took full advantage of it. He walked with me out to the street a few times. That was nice.

The Jets are playing Monday Night Football tonight and he wanted to take a nap before he watched the game. He's back to normal.

Saturday, September 20, 2008

Post Op Day (What Day Is It?)

Brian is hanging in there. It's been hard. His heart rate is high as is his blood pressure. The doctor isn't concerned. The concern is that his stomach is full of fluid, again, part of the process, but, it's so full that it is making the deep breathing that he needs to do to prevent pnuemonia harder and harder. He's tired, weak and they may have to give him blood at some point in the near furture.
Okay, enough of the bad.
His catheter is out and he is peeing well. His bowels are moving and trust me that tumor was not what crawled up his ass and died, as it still stinks like it always did.
The funniest thing happened today. When I got over to see him today, he was on the toilet complaining about the catheter hurting. I looked in the toilet, I know gross but it's the nurse in me, and I noticed that he was peeing around the catheter. So, the nurse and I got him back into the chair and went to remove the catheter. You all know what happens when you take a baby boy's diaper off? Well, the minute the catheter was out of his, well, out, he began to pee. And pee. and pee. He let go as if he had been drinking beer for hours and not used the toilet. It was azaming. As well as the happy look on his face.
I'm tied. It's a lot to cross town each day. NYC takes a lot out of you. Our friends drove in from Long Island today to visit. That was nice.
Denise, my girl friend took me to get my eye brows threaded. That was different. If you don't know what it is, look it up.
But, really, if it wasn't for the television, I would have no idea what day it is. I seem to loose all track of time and date sitting in the hospital. I can't imgaine what it's like for the people who are there for months. But over all, it's been a good experince in the hospital. World Class doesn't even begin to discribe it.
More later.

Thursday, September 18, 2008

Post Op Day 1

Brian is doing fairly well. I went to see him this morning as soon as visiting hours started. He's in a lot of pain, but considering his incision runs from the center of his chest to his navel. He can't stand up too straight yet and he needs to breathe deeper than he is.
It was a busy day with the whole family there to see him all day. He has a PCA pump that allows him to push a button and get pain meds, when he wants them every so many minutes. He's sweating a lot and he still has the cath for urine. He's on O2 to help his breathing and he's jsut tired.
I'm tired too. I've done a lot of walking. The hospital is at East 68th street and York Ave. The furthest east you can get without being in the water. My apartment is at west 43rd street and 11th ave. That's as far west as you can get without being in NJ. So essentally the entire width of Mannhattan and 25 blocks. It's a long trip. Cab takes about 1.5 hour, sub way, 1 hour and bus one hour.
I'm trying to only be the wife and not the nurse while I'm in the hospital. It's not easy, but I'm trying.
Sloan Kettering is great as is the apartment I am staying in. When I get home, I'll blog all about them.
More tomorrow.

Yawn!

It's almost five in the morning. I couldn't sleep long today, so I got up, slightly hung over, but feeling rested.
Yesterday was a long day, having to be up early and going at nothing all day long. Sitting on the edge of the chair. Brian's father kept trying to push food on us, like, well it's noon. We should eat now. It's time for lunch. What do you mean you don't want to eat?
Give me a break. I really only eat when my stomach is growling and that doesn't happen for very long. But, I'm holding up okay.
Brian is in a lot of pain. I talked to him after I got home last night and he had called Emily too. I'm sure that he felt better hearing her little voice. I can tell that he's not feeling well, but he's going to be fine. I'm hoping that I can get him up in a chair today. Better than the bed. Less chance of pnemonia.
Brian's godparents were in town yesterday and they took us to an Irish Resturant. It was very good. But at that point, just to relieve the stress, I was drinking Grey Goose Cosmos. But I got to see Brian's cousin Kevin, who lives in San Fran and I adore. He's a great guy and some time, I'll have to tell you all the story about Kevin, his partner Karl, the book and myself.
So, I think it's nearly a decent time to get into a hot shower, pack up for the day and begin to thread my way across Manhattan. My Dad and Brian's brother in law are coming down today and most of the Clarke clan will be leaving tonight. My mother in law is worried about me being alone and might stay with me. At least another night maybe two. We'll see.
Thanks to all of you who prayed, gave positive thoughts and the like. It was very comforting to know who was all out there for me.
I plan to come online after I get home each night, 9ish NY time. Check back each night for an update.
Hugs and Kiss

Wednesday, September 17, 2008

Step 1 Operation

Please forgive me right now. I'm a little buzzed yet from dinner and it's now after nine at night and I was up at 4 to get ready to go to the hospital
The surgery went well. The doctor was able to remove the tumor and only the gall bladder too. That's great. It was 4.5 hours and Brian is in a lot of pain.
His Parents and both his sisters were here with me and lets just say it was fine. A few tense moments, were I thought about kicking them all out, but all in all... it was okay.
Brian's uncle Patrick and his wife Pat were in town for Patrick's own appointements at Sloan. Tehy met up with us after we saw Brian and they had brought their grandson Brian along and their oldest son Kevin from Cali! What a surprize.
We all went out to dinner and I'm just coming in. I'm tired and I'm buzzed on Cosmos. I'm going to sleep. I'll write more later.
Thanks for all the prayers.

Wednesday, September 10, 2008

Breath

Okay. We saw the doctor again yesterday in NYC. The surgery is a go for next Wednesday. They did a CT with special dye, looking for the blood flow to the tumor. It's connected to the kidney via the blood supply, so worst case senario now is this:
Remove tumor
Remove part of intestine
Remove right kidney.
We got back late last night.
Emily is doing well in 2nd grade... lots and lots and lots of homework nightly. It's a chore to get her to sit down and do it, but we are trying.
Not much more to say right now.

Friday, September 5, 2008

Me

I've been blogging a lot about what's going on with Brian and I try to add somethings about Em from time to time, but I realized that I really haven't talked about me lately.
So, I'm going to be selfish and narsassicitic and talk about myself for a while.
This has been hard for me. I've been dealing with Emily's porblems for so long and getting so frustrated with that whole situation, that for Brian to get sick just adds more problems to my all ready strained back. Work is okay, really busy. My head hasn't been there for a while and at times I feel like I'm just going through the motions.
In the year that I have worked at MVM, I have only taken three days for me. Two of which I was sick as a dog and one was part of our family vacation. I took today off as a mental health day.
I needed it. I still haven't gotten up, for real. I took a long shower and I'm just laying here watching movies on cable. I pulled my neck in my sleep the other night and it hurts just to hold my head up. I'm very tired and I'm thrilled to say that a lot of things are finally fallen into place with Brian and our trips to the city.
I keep thinking that this is jsut the next challange for me. What more can I handle? I know that everyone thinks I'm so strong, but there are times I don't think so. I've had enough for a while.
Those of you who really know me, realize that I have no faith in God. I have a hard time believing in something that I can't touch or experince. I've never felt the spirit. I don't believe there is an afterlife of hevaen. I like church and the feelings of tradition and pomp and circumstance. But I don't feel that sitting in a buiding, saying silent wishes to some greater being is going to fix everything. I have no faith.
Don't get me wrong, I do believe that for those who have faith and do believe, it's real. I tend to lean more towards the eveolution theroies of creation and I believe whole heartedly in both Western and Eastern medicines. But to think that simple prayer and faith is going to guide me through all of the trials and tribulations that have come into my life, no.
For those of you who are reading this and have faith, please continue to do so. There is so much out there I don't understand. I'm just saying that I have never been in a place in my life that I can put my faith, trust and understanding in a being that was created through the minds of people more than 4 thousand years ago.
Please don't try to convert me. It's a lost cause. Many have tried and failed.
My friend from college, a good woman with more than enough faith for both of us, is convinced that deep down I have faith and belief in God. Who knows? Maybe she's right. But I've never felt it's real for me. Time will tell.
Maybe it's all the death I have seen. In my life, my work, I see very sweet and wonderful people die very tragic and hard deaths. I have seen the nicest people have the worst lives. I have seen the crappiest people with the best luck. I have seen both the good and the bad die. It's the same physical process no matter the age or gender. No one is going to lose the battle with death when it comes.
Am I scared that Brian will die? No. If it happens it was meant to be. Am I scared to be without him? Yes and no. I know that I will be heart broken. He is my husband and I do love him. But I know that I will carry on. I have Emily, a constant reminder of all that is good about Bri. I'm more scared of being alone. I'm not good alone.
Plus, there are friends, family and the like around me. But sometimes, it feels so far away. I don't know. I'm so confused lately.
I want to just curl up and wait until this is all over. Waiting is indeed the hardest part. I'll feel better when we are there, in the hospital. Then I can relax as much as I can.
My mother doesn't want me to be in the city alone and I appreciate that. But at the same time, having everyone, anyone there sitting and staring, waiting for the next thing is more nerve racking than being alone. I know that worrying is wasteful. It is. I just want it to be over. Is that selfish? I'm ready to go tomorrow, but we have more than a week to wait. I've feel like there is so much I need to do, but I have no energy left to do it. I'm drained. And when Brian and Em are home, I feel that I need to continue to be strong. To not let on how upset I really am. And I feel that I need to be strong for his family too. It's just so hard.
And who do I get to vent to? Who do I get to yell at and cry with? Brian. NO. That's not good. The few times I have tried I keep hearing that faith and trust in God will help. I don't want to hear that. It's not me. I don't know what I want to hear.
And to top it all off, my birthday is going to suck... again. 35 and no party, I don't know that I will be able to go out. Brian will be too fragile and just home... if we are home at that point.
Sorry, not asking for pity. Just venting.
I'll write again soon.
Thanks for listening.

Wednesday, September 3, 2008

Day 2

Does this seem like a really long episode of 24 or not? At least there are no terroist bomb threats or plots to kill the president. And I don't think there are any rogue Chinese agents out for Em and I.
Okay, so today's update.
The doctor in NY's office called and we are on for the surgery. The new date is Wednesday Sept 17th.

But let's talk about something different tonight. Today was Em's first day of second grade! MY little one is getting so big. She had a good day as far as I can tell. I ask her how school was and she tells me fine. I asked who her teacher is and she tells me Mrs. Daw. Then I ask who is in her class and she tells me kids. Aren't we a bit young for the one word answers?
We were at my parents tonight, playing a bit with the new camper. We have some water issues and some eletrical issues. Em spent the entire time swinging on her tire swing, happy as a clam.
She's getting too big. I'm afraid to blink and we will be talking about her high school graduation.

Tuesday, September 2, 2008

Next Step

We saw the surgeon in Sloan Kettering today. There is a lot to say, so I'll keep it as brief as I can.
1) It is cancer. A rare one at that.
2) It needs to be removed.
3) It needs to be removed quickly and that is the only treatment.
4) Worse case senario, it will be a Whipple Procedure. It's a complicated procedure that would involve removal of part of the stomach, pancreas, gall bladder, and a large section of the intestines call the duodeumn.
5) Brian needs more testing to check the blood flow to the tumor.
So,
1) We have to get the insurance company to approve everything.
2) Once that happens, the doctor wants him in the city Tuesday of next week to have the scan and do the pre op.
3) The doctor would like to schedule the surgery for the 15th. Five to seven days in the hospital.

So, yet again we are waiting on the #@$#^%^%*%#@2@# insurance company.
But Brian and I had a good time in city. We had a nice hotel room with a view of the Chrysler Building. We went to Little Italy and had pizza at Lombardi's. After the doctor's today, we walked over to St. Patricks and lit some candles. Then, of course, we went to American Girl and bought our daughter a treat.
So, I'll keep you all updated on the next installment in:
(insert bad theme music)
THE LIFE AND TIMES OF BRIAN'S ALIEN BABY
(dun dun dun...)