Friday, January 26, 2007

First round of outpaitent chemo...

Wednesday was my first round of outpatient chemo. It was an interesting experience to say the least. I checked in and then was taken back to a large cafeteria like room where several others were plugged into chemo bags, just dripping away. My chemo was a simple shot, but they had to flush my ports and make sure they were working well. They are, and things are going good. My white blood cells are at 0.8 and that is very low. They were a little concerned about that and my temperature. If it goes between 101 and 102 I need to head straight to the ER. Mom got me a thermometer and I have been checking just about every time I get a chill.

With my white blood cells being so low, my energy level is low too. I was told the fewer visitors the better till after the weekend. Chuck has been very gracious, waiting on me hand and foot. The shots are going better. Still need the cold washcloth and the breathing, but the nerves are getting less as the days go on.

I did find out that my bone marrow test came back negative which is a great thing. My hip is still sore believe it or not. I am not sure exactly what they did back there, but if I lay on that side too long it starts to ache. My leg is swelling quite a bit again as well. I have a doctors appointment with the lymphoidic therapist on Monday. Hopefully they can work out some of the fluids. My lymphoids are just not doing their job well being a few of them are swollen from the cancer.

I wanted to say thank you so much to everyone that donated PTO for me at work. I was surprised by the amount time you all donated. With your help I was able to cover that week waiting period before my short term disability kicked in. Thank you! Thank you! Thank you!

This weekend is going to be a lazy, relaxing and hopefully white cell regenerating weekend. It seems like this is just a never ending battle. Get them all back to normal levels and then go back in Wed for another outpatient treatment. Oh well. After my next Wed treatment, I will be checked in to the hospital the following Wednesday for a 5 day inpatient round up on the hill. (OHSU) When I’m up on the hill, it does get quite boring…I just sit around and read and watch tv so if you would like to visit just give me a call! Just no germies. Gotta stay healthy and clean!

Thank you for all your support and prayers,

Monday, January 22, 2007

“Chuck shot the Sarah…But He Did Not Shoot The Dipity!”

Chuck has turned from professional nurse maid, helping me with everything to full fledged Dr. McDreamy! He gets to pinch an inch of my fat on my stomach everyday and give me a shot…ick. That is a very trusting thing to let one do to you…and me being so scared of shots, needles, blood and the sort, even a simple shot requires me laying down, getting a cold washcloth on my head and numbing the area with cream 30 min before he gives it.

So far all I have been is tired. I am sleeping the majority of the day, but I think that is just left over from all the stress and lack of sleep in the hospital. My leg has swollen up quite a bit, but the doctor said that would be normal. I had to use my crutches yesterday when we attempted to go to Fred Myers. It felt good to get out of the house, but it was a bummer to have to rely on the gimp sticks again. I am walking okay today without them. I think it will be a day by day thing.

I go in Wednesday for an outpatient treatment at the new South Waterfront building. That should just take a few hours. Other than that healing and resting are on the schedule for the first of the week.


Thursday, January 18, 2007

Round 1~ A Un Nauseated Success!

Ding Dong Round 1 Is Done!
I Surprisingly haven't felt nausea or sick much, they did a great job with the right amounts of medication to help that right away. They did say that it could come on around round 2 and even when I get home. They are able to perscribe me with medicine at home to help, but its just a matter of trial and error. So far so good, knock on wood! The only thing is I have been just very hungry. Might need to take you up on that offer JB. I need some good food! This hospital food is not quite up to par. There is the "alternitive" menu available but I seem to lean towards the peanutbutter and jelly sandwiches, friut and popsicles. I dont know why, but the popsicles taste the best! I guess there are steroids in one of my medications so constant food intake is going on.
I am being filled with fluids too and have gained 12 lbs of water weight..I am up at least every 2 hours getting rid of it, but its a good thing, cause they don't want the medication in my organs too long. One of them is very harsh on bladders so they want it out face is all fat, as you can see in the pic!
This is a pic of me and my little brother, Christopher. He isn't all that little, but you know how that goes. My family has been so supportive through this. My poor mom has sat in this uncomfortable red chair for hours and hours just waiting on me helping with whatever I need. That is one blessing of many, my friends and family are close and so willing to help. Just the other day 10 bags of grocerys showed up from a wonderful long lost friend. God had been telling her that it was the way she could help and so she did. It was a wonderful blessing and we wont have to go grocery shopping for a while. Thank you "Neenie"
The yellow gown Christopher has on is because I am in quarantine, everyone that comes in to visit me has to wear yellow gowns and purple gloves to protect everyone on the floor from me! They are doing this new thing, trying to monitor the incoming viruses.
So far no hair loss. They said that might not happen until after 2nd or 3rd treatment. For now its just super greasy. I haven't been able to take a shower because of the port placement. I have to wait till tomorrow. So if you hear of an oil slick in the Willamette river, don't be worried, its just run off from me washing my hair!

I had a bone marrow test done yesterday. For any of you that have not had one of those, I do not recommend them. My mom says that in her hospital they never do them the way they did here. They just did a local and then crammed that blunt needle in my bone. It hurt so bad. I could tell the doctor felt awful afterwards and promised me if I had to have another one he would do a mild sedation like with the port. My hip is bruised and all sore, I can barely lay on my side, I need a donut to sit on or something. I have not heard the results yet, that will take a few days. They are suspecting that everything will be okay, but bone marrow is a tricky thing that this kind of cancer likes and likes to hide in. Better safe than sorry, that's what I have been trying to tell my butt, every time I lean on it wrong!
One bad thing they did find in the CT/PET scan is that there are several nodes in my lungs. All 4 sections have small tumors. They are less than 5 mm in diameter so that is a good thing. For now they are going to stay on track with the chemo, but do a eval again after 2 rounds to see if the chemo is shrinking the tumors at all. The ones in my leg and lymphoid can be removed by surgery, but with the lung tumors being in all 4 sections they are not looking to remove them. We will find more out on all of that in the next few months. But just another thing to send happy thoughts about.
My plan is to leave the hospital tomorrow, Friday, and then I have to come back on Sunday for a white blood cell booster shot. Then back again Wednesday for a small treatment of chemo, just out patient treatment in the new facility on the South Waterfront. Then home for a week, back on the following Wednesday for another outpatient round and home again. I will return to the hospital for 5 days the following week and then home for 2 weeks to recover. That completes a full cycle. There are 4 different drugs they are giving me, all with long names that I can type out of you are interested, but they give me 2 the first time then 2 the next. It sounds like an awful lot I know but they are hopeful with this aggressive of a treatment they will see positive results fast.
In between rest and recovery I will continue physical therapy as well as lymphatic therapy for the swelling. Maybe somewhere in there I will find time to watch some tv. I was also looking into volunteering at the childrens wing on my weeks off. Reading and coloring with the kids will boost my energy and refill my heart. Kids are filled with so much hope and love. It will give me something to do and because we both need to be safe and away from outside germs it will be a perfect opportunity for both me and the children.

I have to say I have enjoyed reading your comments tremendously, they make me smile. Even more fun is trying to figure out code initials and names...some are a little tricky! Thank you for your thoughts and prayers

Monday, January 15, 2007

The Journey Begins

"In the midst of winter I finally learned that there was in me an invincible summer." ~Albert Camus

The journey begins tomorrow, part of me scared to death, unsure of what will happen. How sick will I get? How much hair will I loose and how fast? And the never ending question of Why? Being the optimistic positive person I am, I am trying to focus on the fact that tomorrow is the beginning of me moving towards an end. I finally have a plan. No more decisions and questions and new doors. This is going to be the door that will end all of this.

The game plan starts tomorrow, Tuesday, at 6:30am. Ick! You all know its hard enough for me to get to work at 8:00 let alone get to the hospital at 6:30. Maybe being half asleep will help ease the nerves of the port placement. I am not looking forward to that one bit.

Port placement is at 6:30. They say that using a port will help save my veins and it is much safer. Another scar L.

Port-a-cath. A more permanent option involves the placement of a port-a-cath. The port-a-cath is placed under the skin on the chest. The catheter is then inserted into the superior vena cava vessel at entrance of the right atrium of the heart. This catheter can be placed in radiology by an interventional radiologist or by a surgeon in the operating room. It is approximately a one-hour procedure. The useful lifetime of a port-a-cath can be as long as three to five years. The port-a-cath can be felt under the skin and the nurse can find the entrance by locating the edges of the port-a-cath and inserting (cannulating) a special needle (called a Huber needle) into the soft middle section. Medications can be given through the port-a-cath and blood can be drawn from it eliminating the need for a blood draw from the arm. The use of a portable pump and port-a-cath allows the medication to be given over several days in the home setting rather then as a patient in the hospital. There are no dressing changes required but there is some maintenance involved.

After the port placement I will go in for a MUGGA scan of my heart. One of the drugs I will be taking might cause heart complications and they want to do a baseline test of the strength of my heart so they can monitor as the treatments go on. They aren’t too worried about this, due to me being so young and healthy!

The MUGA scan (MUltiple Gated Acquisition scan) is a noninvasive test that produces a moving image of the heart. From this image, the health of the heart’s major pumping chamber (the left ventricle) can be assessed.

A MUGA scan is performed by attaching a radioactive substance, Technetium 99, to red blood cells, then injecting the red blood cells into the patient’s bloodstream. (The level of radiation to which a patient is exposed during this test is considered minimal.) The patient is then placed under a special camera (a gamma camera), and with some fancy computer manipulation, a “movie” of the beating heart is made. From this moving image, the MUGA scan gives an accurate and reproducible way to measure the ejection fraction of the left ventricle.

The left ventricular ejection fraction (LVEF) is an excellent measure of overall cardiac function. The ejection fraction is simply the proportion of blood that is expelled from the ventricle with each heart beat. So, for instance, if the left ventricle ejects 60% of its blood volume with each beat, the LVEF is 0.6. (A normal LVEF is 0.5 or greater.)
While there are other ways to measure the LVEF (such as the echocardiogram), the MUGA scan measures it more accurately than any other method. In situations where it is important to detect minor changes in a patient’s LVEF – such as in following patients receiving Adriamycin – most experts believe the MUGA scan is the best test available.

Then once all that is done I will be headed to 5-A for admitting. There they will administer the first round of chemo and I will have to stay in the hospital for 48 hours for monitoring.

I am not sure what the exact treatment plan is. I thought they had said one week in-one week out, but my mom is saying she heard 1 week in 3 weeks out. Might have been the valume they gave me during the needle biopsy, but I will make sure to let you all know as soon as I find out the plan.

Friday, January 12, 2007

Sarah Beth

Okay I promise I am not going to fill this blog with sad and teary things, but I just had to share this song I found. It was written by a group called Rascal Flatts back in 2005. It is the hidden track on their "Fast Cars and Freedom" cd and scarily reminds me of me! My name is Sarah Elizabeth, and this journey all began in 2005 when I fell down and broke my leg... I have always wanted to email the band and find out the history behind the song

"Lefty" says I am not going to prom, so it is not ALL about me, but he did mention we could have a prom when I come back!

Sarah Beth is scared to death
To hear what the doctor will say
She hasn't been well
Since the day that she fell
And the bruises just won't go away

So she sits and see waits with her mother and dad
Flips through an old magazine
Till a the nurse with a smile
Stands at the door
And says will you please come with me

Sarah Beth is scared to death
Cause the doctor just told her the news
Between the red cells and white
Something's not right
But we're gonna take care of you

Six chances in ten it won't come back again
With the therapy were gonna try
It's just been approved
It's the strongest there is
I think we caught it in time

Sarah Beth closes her eyes
She dreams she's dancing
Around and around without any cares
And her very first love is holding her close
And the soft wind in blowing her hair

Sarah Beth is scared to death
As she sits holding her mom
Says it would be a mistake
For someone to take
A girl with no hair to the prom

Oh, just this morning right there on her pillow
Was the cruelest of any surprise
And she cried when she gathered it all in her hands
The proof that she couldn't deny
Sarah Beth closes her eyes

She dreams she's dancing
Around and around without any cares
And her very first love is holding her close
And the soft wind is blowing her hair

It's a quarter to 7
That boy's at the door
Her daddy ushers him in
And when he takes off his cap
They all start to cry
Cuz this morning where his hair had been
Softly she touches just skin

They go dancing
Around and around without any cares
And her very first true love is holding her close
And for a moment she isn't scared