Tuesday, August 30, 2011

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


  1. Oh, Sandi, I'm so sorry for what you're having to endure. All those professional medical people should just be honest and stop beating around the bush. It makes things so much worse when they don't say what's on their minds. I ask the Lord to hold you in "the palm of His hand," as you continue to recover. I ask Him to encourage you and strengthen you, as well. Keep us posted.

  2. Sandi - from one drama queen to another, hang in there - and keep talking through all this. It has to help to put a voice to your feelings. Plus you never know who God is using you to help through a similar situation. Love you lots - God is working in you and through you every minute.
    Rebecca H