GOOD NEWS!!!

First full review of YAHSHUA'S BRIDGE!!! It's due to release November 1, 2011!! Just click on the book! YAY!!

Feeling Very Beat Up

I had the WORST day yesterday.

I went in for my scheduled appointment for the photo (ferenthesis/thing) to help tame down the new (donor) T-cells that might be attacking my body (which IS working, btw). My counts are improving and as you know the doc says the liver biopsy test said I DO NOT have graft vs. host disease in my liver. Karsten/Hubby and I made the doc repeat this THREE times just to make sure we heard him right. They don't yet know what's wrong with my liver, but the light therapy is working, and it's possible when I get off all the drugs/antibiotics it will improve.


Well, I got an unexpected visit from a Nurse Practitioner (NP) yesterday, while I was having my blood work done on the photo machine. Apparently, I had an appointment with her and knew nothing about it. It was also out of the ordinary because I usually only see NPs weekly, and I'd just seen Dr. Myint (my main doctor) on Thursday. Well, yesterday was Monday, so I wasn't supposed to see an NP until Thursday of this week. But she came and here's what happened:

To sum it all up, she basically told me Dr. Myint DOES BELIEVE I have graft v. host disease in my liver, even though it didn't show up in the test results, and so they're going to treat me as if I do. I couldn't believe what I was hearing. Of course, I started bawling and asked why the doc would say that? She said, I was crying because of the steroids and they make people crazy and do crazy things. I said, "No, I'm crying because you're contradicting what the doc said about my results." Because I was clearly upset, she said the steroids can make me feel suicidal. If I feel that way to call her immediately. I told her I wasn't feeling stinkin' suicidal, just upset by the contradictory information. And honestly, she's the LAST PERSON on the planet I'd call if I ever did feel suicidal (which I DON'T believe I ever will; I have FOUR KIDS that need me!). Instead, I might feel HOMicidal toward HER (please know I'm joking here)! ARG Why would she say the doctor is lying to me? Why?! Why would she do that to me? That's what she's saying, right? He's not being truthful? He's telling me one thing, but her another.

All I know is I left feeling completely beat up after this conversation. One of the nurses there that I highly respect didn't think they should lower the dose of my steroids too quickly/too soon (he told me not to expect it), but this NP got permission from another doc to lower it (my doc is out of town). Now I'm doubting if I should even listen to her! I'm not feeling very well today--I took the lower dose, but now I feel nauseous. Either it's stress from my conversation with her (which my mother-in-law witnessed and said the NP could have handled things much better), or it is the steroids making me feel nauseous. I'm waiting to hear back from my nurse coordinator to get this mess straightened out.

****

Okay, just talked to the nurse coordinator. She said that the tests were negative for graft vs. host diseases in my liver, but sometimes the tests give false negatives, so Dr. Myint doesn't trust it, so he's still going to treat my body as though I have the disease to play it safe. The doc NEVER said this to us, even after our making him repeat the results THREE times. Maybe he doesn't want to scare or worry us? But apparently, everyone knows what's going on but us. SIGH

Anyway, all I know is I'm in God's hands. He's my DOCTOR, and He's going to take care of things. Now, if I could just PRACTICE what I preach and quit all this worrying, I'd be FINE. LOL

I go in for a bunch of tests this week to see how the cancer is doing: PET scans, MRIs and another bone marrow biopsy. “JOY” I'd think the radiation fluid I have to drink for the PET scan wouldn't be good for my liver. Right? I mean . . . duh! SIGH But I'm not a doctor. 

I'm still on steroids, so if I'm a little wacky, please forgive me. Sure miss being normal. It's gonna come. If you want to keep updated, just check out my Facebook and blog. 



I just really don't like this particular nurse. She loves using words like: graft vs. host disease is a real MOTHER. You don't want it.

Well, DUH! Can you just tame your language down a bit? sigh It's stressful enough without her bombarding us. After hearing all that, I just wanted to drop facedown in a pile of mud and let God drag me away. My mother-in-law laughed when she heard that description. Though I was sincere, it was nice to see the humor in it, and it made me feel like Anne of Green Gables. I do tend to be a drama queen, and these steroids really don't help.

Well, that's the latest. Pray I have peace and will trust in the Lord.

Love you all,

Me xxx

I'm so vain.

So, there's a picture of my "lovely" bald head on Facebook. I tried to paste it here, but for some reason, it won't work.

Here's Chelsea and Whitney instead. I'm the bald one on the right. :-) We were celebrating my daughter, Whitney's, 18th birthday. I'm so proud of the woman she's become. She truly loves God and does all in her power to please Him. I love you, Whitney. You make me proud. Happy Birthday!

Below is my grandma and me, watching the kids swim during Whitney's party. You won't be able to see some of the details of my head during my explanation below. If you're curious, drop by Facebook. You can see them there.

Anyway, here's what I had to say:

I can't believe this is me. Thank goodness it's only temporary. Notice the dent in my forehead? They cracked my skull during the biopsy of the tumor. "Lovely." It's amazing how I can still be so vain. What's it like for my four-year-old to look at me and know that freak . . . er . . . I mean, that bald, fat woman is her mother? Must not be too bad since she still hugs and kisses me, and still wants to cuddle with me. 

It wasn't easy to share this photo, and my cheeks are so hard and heavy from the steroids, I can barely smile. sigh But I felt I needed to mark this moment in my cancer history. Like I said: I'm the only one who can't lose weight on chemo. Thank God He loves me no matter what I look like. LOL, SIGH, SOB, WEEPING. All the pictures from my past that I thought were ugly are now beautiful! Even the ones below. My mom is the one in pink, and Aunt Pat is on the right. Pat helped raise me and my sis and is like a second mom to me. 

Chelsea with her Daddy at Kirsten's performance when she sang Blessings by Laura Story. 

Kirsten and Chelsea. xxx

And there's my Aaron with Daddy and Kirsten.  

Thank You, Father, that I'm still alive. Alive for my family. I'm here to continue the fight. Please just give me the strength because I can't do it without YOU.

Just a taste of those I'm fighting for. There's more, but I'm horrible at downloading these pictures.

And umm, Lord? Thank You for all the things You've taught us and continue to teach us throughout all this. I'd just like to put in a special request. When I'm healed, will You please give us all a really fun vacation? I have some places in mind (You know, here on this planet, e-hem). Just think about it, Lord. 

Loving You, my Father, my GOD . . . through the FIRE.

I'm ready for some good news. How about you?

I DO NOT HAVE GRAFT VS. HOST DISEASE IN MY LIVER!!!

My liver is SAFE FROM THIS NASTY DISEASE!! PRAISE GOD!!! THANK YOU, GOD!!!!

Yes, I know ALL CAPS means I'm yelling, but right now, I’m strung out on steroids, so that’s my excuse. :-)

I do have a slight case of graft vs. host, but it's only in my face/skin and mouth, which isn't as dangerous, obviously, but it's also so light, they feel they’re able to keep it under control. And they said they want a little of it because it will fight the cancer. The doc isn't worried and he will simply manage it. I think they believe they can bring it all under control. Well, I asked GOD to be my Head Physician, so I KNOW it’s gonna happen. He’s brought me this far, hasn’t He? I put my trust in Him, no matter what happens. No matter what happens, guys. My God is in charge whether I live or die.

The docs don't know why my liver enzymes are high. They said I have a fatty liver (this is BEFORE I started eating like a pig after being put on all the steroids, lol). But it's very likely the drugs are causing my liver enzymes to flare up because it was FINE before I started having drugs for breakfast, lunch and dinner. Either way, it's NOT THE DISEASE!!! What a HUGE relief!!! I BAWLED/SOBBED when I got in the car just thanking God over and over and over again.

OH!! They're going to cut my steroid dose in HALF and then slowly tapper off!!! The half dose starts tomorrow. I'm desperate for this! Thank You, God!

I don't know if I'll be able to sleep. I'm dying to EAT something. Oh, I ate so MUCH ice-cream and candy, the docs had to give me an insulin shot. LOL So, ice-cream and candy is now out of my diet!!! I'm so SAD!!! I DID EAT A TON of it. E-hem. I'm worried now, though. I don't know what else to eat but corn on the cob and sweet pickles (insane, I know; and even though I look it, no, I’m NOT pregnant, sigh). These are the only things that will go down. In fact, I really, really want some now (it’s 11 PM). In fact, bacon and eggs sound good NOW. See what happens. I go to bed thinking of FOOD ALL THE TIME. I’ve got to get these steroids out of my system.

LORD HELP!

I know it's because of all these prayers that have been going up on my behalf that God is hearing. Thank You, my God. Thank you my brothers and sisters in Christ. xxx

Love you all.

Sandi xxx

I'M HOME!

I'm home! All went well. Will get the results next week. This graft vs. host disease is when the donor's cells attack my body. They want to make sure that's not happening. Apparently, the favorite spots to attack are the liver, GI tract and skin. And my liver enzymes are at an uncomfortable "high." They want to keep an eye on it. Thank you for your prayers. Love all of you.

Thursday TOMORROW

TOMORROW (Thursday), I go in for outpatient surgery for that liver biopsy. They're talking about going through my neck (I already have a stinkin' hole in my neck, UGH! So, now I'm sure I'll look like Frankinstein.) Anyway, I know that's the least of my worries. lol Please pray it goes well. I'm so tired of this. So, so TIRED. Anyway, and I'm scared. After all I've been through, you'd think I could handle this. This all has to do with the graft vs host disease, so pray they'll be able to get this under control. That's what all this is for. sigh

More Tests Next Week

Will be undergoing tests next week, including an outpatient liver biopsy (yuck). The new cells are attacking my liver, but my bilirubin is normal, so that's good. Pray the docs will be able to get the cells under control. In the meantime, I have to stay on these nasty steroids. Feel like I'm about to explode.

A very difficult update to write.

I cry when I go to bed, and I cry when I wake up. You see, my stepdad has been diagnosed with T-cell Lymphoma, the same type of cancer I have, only it’s thankfully not in his blood. But he’s been undergoing chemo therapy for several months now. Then a precious sister from our home congregation was diagnosed with pancreatic cancer just a few months ago. Her youngest is the same age as my oldest (18). The mother, Meg, died on Saturday night, and and she’s leaving behind three kids, the oldest just graduated from college, and the middle is serving in the military. Her poor husband is now alone during this time that he and his wife should be experiencing that “empty nest” feeling and celebrating each other. I’m just heart broken! This is such an encouraging family. Meg was ready to go. She doesn’t want anyone wearing black to her funeral, which is this Thursday evening. Meg has the right attitude because it’s not about this life. She was ready to be with her Lord and Savior.

But I don’t have the right attitude. I’m so upset about Meg’s loss! Okay, it’s not her loss, but OUR loss. I’m upset that God would see fit to take this godly woman from our lives at this time. At a time where she’s going to miss her oldest son’s wedding, at a time where she’ll never meet her future grandchildren or be here for her family in ways we mother’s dream of being here. I’m so sad and hurting for her family, I can hardly write this post.

In the past year we’ve lost approximately eight people to cancer and other diseases in our home congregation. The congregation I belonged to just nine months ago, is not the same place. So many loved ones are missing. Yes, I know they’re in better places, but all I can think about are those left behind. I’m hurt and I’m angry.

I even feel guilty for surviving. I shared that with my husband and he told me to cuddle on the couch with my two youngest (ages four and eleven), and after that, the guilt went away. So, while I know God knows what’s best in every situation, I’m still upset and wailing that my sister Meg Stewart is gone.

I love you Meg, and I miss you so much!

As for me, my liver enzymes have doubled. They say it's nothing to worry about. Either they think it's the drugs I'm on or I'm suffering from graft vs. host disease. They don't know yet. I've been getting stronger. Went to church for the first time last Sunday, so I'm just taking one day at a time.

Please pray for Meg's family.

Love you all.