Monday, September 27, 2010

Worry worry worry

We head back to Little Rock tomorrow afternoon.

Needless to say, the "Arkansas Tension" has arrived - but this time it's hit Tanner too.

This is the first time that he's admitted to me that he's nervous (since he was first diagnosed).  Saturday night he asked me what I thought about our trip to Arkansas this time and I told him that I thought everything was going to be fine.  He said he "hoped so".  I told him that I thought all of his symptoms (lack of sleep, inability to eat very much, and pain in his right femur, lower back, and shoulder) could be caused by his medicines and asked him if he didn't agree.  He said he didn't know.

Last night we had an emotional talk and, let me just say, I'm glad we are going to see Dr. Barlogie this week.  Tanner cried and told me that he just doesn't feel good.  That he can't sleep, eat, and is in pain nearly all the time and that the doctors here in Fort Worth can't seem to help him.

I think Tanner (and myself) need the reassurance of the tests to assure us that everything is okay and the chance to talk to Dr. B.

I ask myself all the time when the worry will lessen....

Wednesday, September 22, 2010

About time for AR

Well, it's nearly that time again.  We head back to Little Rock Tuesday for the re-staging tests and to find out if Tanner is going to have to have surgery or not on the broken leg.

The Arkansas tension has arrived.

I was "ok" all day at work today and then I went out to dinner and started crying and have been crying off and on all evening.

I saw what my mom went through with all of her children, but I never truly grasped the worry that a parent endures until I had my boys.

On another note, we have this thing in our family called a "Cemetery Working" where we take flowers down to the cemetery in Red River where most of our family is buried.  You place the flowers on the graves and have a picnic out in front in the designated picnic area.  My mom, dad, two brothers, grandmother, and aunts and uncles are buried there. 

The Cemetery Working (or as my Aunt Tincey says, Homecoming) is the first Saturday of October, which is the Saturday that Tanner and I return from Arkansas.  I keep going back and forth about whether or not I should take the flowers on down there this weekend (I promised my mom I would make sure there were flowers there) or stop on the way back from Little Rock the morning of the Cemetery Working. 

My fear is, what if something happens that stops me from getting there Saturday morning?  Tanner has two doctor's appointments Friday which most likely means we will be there all day.  Depending on how late we get through will depend on when we can head back to Texas and, though I plan on going to the homecoming, what if we just can't make it?

I think my plan is that when I get off work this Friday afternoon, I'm going to head on down there and put out the flowers (I already have them in my car).  That way I won't have to worry about them.  They will be there for the homecoming regardless of whether or not Tanner and I get to stop there Saturday morning or not.

My hesitation is that I'm kind of a basket case right now and I don't know how well a trip to the cemetery, where most of my family is buried, will sit with me right now. 

Oh well, maybe it will be good for me.

I'm a mess.  Sometimes, I seem ok but I think deep down, I'm always really a mess.

I wonder what is going on deep down inside of Tanner?

Friday, September 10, 2010


Tanner went to the doctor alone today and they decided to do x-rays. It seems that he is having some pain in the right femur (where the largest lesion is) and his left shoulder. I was with him when he talked to the doctor about the fact that he was having occassional pain in the right femur a couple of weeks ago and they thought it was probably because of the bone strengtheners (which cause the bones to ache) and the fact that he's up and around and acutally walking (with the crutches, but actually walking instead of just swinging along).

He texted me all of this at the end of the appointment today and, to tell the truth, it kind of scared me. You know me, I think I should always be there if they are going to have to do any tests or anything on Tanner.

His appointment was at 12:30 and he ended up being there until after 4:30 p.m. - which meant he drove home in the 5:00 traffic! He said they told him that they won't have the results until Monday. I asked him about the left shoulder (since he's never told me that it hurts) and he said it's been hurting since last weekend. He thinks he might have just pulled a muscle or something but he's careful to tell the doctors whenever any pains occur - which I think is a very good thing.

Painting Justin boots for cancer auction
He is going out with another new girl. Well, actually she's not new. She's been a friend of Tanners for a long time and now they are dating. If I didn't think I saw much of him before, I hardly ever see him now!

We head back to Arkansas at the end of the month so I'm already beginning to feel the tension build. It's that "AR" tension...

Friday, September 3, 2010

Texas DOI

Tanner has been out at his dad's house all week and is going to come home on Sunday.  I've missed him...

We have spent so much time together this past year, it's been a little hard as he's pulled away since we got back home and spends more and more time with his friends. 

Normal behavior, I know, for an 18 year old!

The Texas Department of Insurance called me and said that they are sorry but they aren't going to be able to assist us with Tanner's appeal against US Health and Life. She said that the Texas DOI can't determine "medical fact:" - which means they can't decide if Tanner's treatment was experimental or not.

At this point, it would be up to us to seek legal counsel and go before a judge and let the judge decide.  The Texas DOI and Tanner's doctor here at Cook Children's Oncology Department have given me contact information for the Patient Advocacy Foundation who assists cancer patients locate the help they need when they run into situations like this with their insurance companies.  We've also talked to an independent lawyer (not associated with any of the cancer foundations) who is doing some research on Multiple Myeloma and Tanner's case.

I guess we'll just see where it goes from here.

Tanner is doing okay.  He seems to be really tired no matter how much rest he gets and still doesn't have very much of an appetite.  We head back to Little Rock at the end of the month, so we'll see what Dr. B has to say.

I'm going out to the lake tomorrow with some of my cousins.  With highs in the 80's and lows in the 60's, it promises to be a beautiful weekend!