Sunday, April 8, 2012

Happy Easter

I'm listening to the sound of rain outside my window and am going to try and sit down and write for a few minutes, though I'm still not much in the mood right now...  My Aunt Onvie told me when I was last in Paris that I needed to post more often, so here goes.

I took Tanner to Dallas last Wednesday and we saw Dr. Berryman, Tanner's main Oncologist. Tanner was the last patient of the day and the doctor spent over an hour and a half just sitting and talking with us.  He told Tanner that he knows he's had "issues" in the past and he told him that he didn't care, and then he backtracked and said that wasn't true, he cares - but he's not going to judge.  He went on to explain that on the other hand he wants to have an honest open relationship based on truth and trust.

What Tanner has run into is the fact that he has exhibited addiction to the pain medications in the past few years so everyone is hesitant to "go there" with him at this point in time.

I explained to Dr. Berryman that I might be the "gullible mother" but that I've been watching Tanner for months now and I see things when Tan isn't even aware that I'm watching and that I truly believe there is something going on with my son's back.  He gives in to the pain and I hear him groan when he gets up and down from a sitting position.  When he's at my house he's gotten cushions off the couch for support when he's sitting at the kitchen table, and he went out and bought a support pillow to put behind his back when he's watching television - or is just sitting around the house.  I've seen him cry - and Cearra has told me about him being reduced to tears from the pain in his back when they've been out shopping and they've had to come home.

I just don't think Tanner could carry on such a long standing act simply to seek pain medications - and Dr. Berryman said that he agreed with me... that he could tell simply by Tanner's body language that he was in discomfort. 

He had Tanner stand and he ran his hand up his back and Tanner flinched and told him that where the doctor was touching was where the majority of the pain is originating from.  Dr. Berryman told him it could be from the ongoing Velcade treatment he's been undergoing for three years that's now causing the pain - or it could be "something" in the bones caused by the Multiple Myeloma.  He explained to us that where Tanner seems to be experiencing the pain is along the spinal column and if "something" is going on, it could cause paralysis and he's going to schedule an MRI so that he can see exactly what is happening in the bones.

In the meantime, he's going to take over the "pain management" for Tanner himself until he can find a real pain management doctor who is familiar with pain, multiple myeloma, and young patients - and we are going to have to start going to Dallas once a month to see Dr. Berryman himself instead of seeing a regular Oncologist in Fort Worth.

He prescribed Fentanyl patches again that Tanner is to wear for three days at a time.  I am keeping the patches in my posession and am giving them to Tanner when it's time to change them out - and we are putting the used patches in a bag to be taken back to Dr. Berryman in Dallas when we go back to see him once a month. In this way, Dr. Berryman hopes to build a relationship of trust and can give Tanner the relief that he needs from the ongoing pain he seems to be experiencing.

Tanner put the first patch on Wednesday night after the doctor's appointment and I saw him again on Friday when I took him to his weekly chemo appointment and the difference was like night and day from the way he has been for weeks now.  He was in a good mood and said the pain was down to a "dull ache".

So... at this point we are waiting to hear when the MRI is scheduled and Tanner seems to be more comfortable... 

We were also told that Trevor is NOT a stem cell match so, if Tanner ever relapses, a sibling donation will not be an option.  Tanner cried when he was given that information and I had to remind him that he has thousands of his own "clean" stem cells stored in Arkansas at UAMS.

It's been an emotional week seeking the help that Tanner seems to need for the pain - while on the other hand dealing with the issues caused from the fact that he has become addicted to pain medications over the last few years.  We just have to have faith that it will all work out in the long run.

I went to the lakehouse this weekend for a few days of rest, relaxation, and contemplation.  It was a much needed break.  Happy Easter.

The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope... Barbara Kingsolver

1 comment:

  1. We have just celebrated the most amazing event in our history; the resurrection of Jesus. I know in my heart that He is watching over you and Tanner in this long difficult journey. I don't know why you have to make this journey, but I know you are not alone. A lot of people read this blog and never comment. I am guilty of this myself. I know it makes you feel better when someone does let you are not alone.
    It is a sad fact that a lot of our professionial people care only about $$$$$$$. We have to be so alert when it comes to taking care of our bodies and our minds. We don't always have to go along with what they tell us. Not all doctors are this way but such a large majority are becoming less and less caring.
    I pray for all our family and friends and for all the people to stand up and announce that they believe in Jesus. That He died for our sins so we may have everlasting life. I know there are those who are probably tired of hearing me but God has asked me to be a messenger on His be it.
    I love you all. I am so happy to have you in my family. I love you all unconditionally.
    May God bless you and keep you in His arms.
    Your Granny