Counseling

I took Tanner yesterday to have his brace refitted.  After seven or so months in the same brace (which has been in several swimming pools, lakes, and rivers this summer), it was becoming quite worn out, not to mention that his leg has gotten larger and it was beginning to cut into the skin. 



The technician at Hanger Proesthetics took one look at the brace and decided that he just needed a completely new one.  She told him to hang onto the old one and if he decides to go swimming anymore to be sure and use the old brace. 



This morning I took him for an evaluation and it was decided that he could benefit from some one on one counseling.  It seems that the stress from the last year has caught up with him and is wearing him down and affecting him in his daily life. 



He will have one private session a week starting tomorrow afternoon.  I hope that this gives him some relief.

This afternoon we went to his weekly maintenance chemo appointment and had a long talk with Dr. Albritton.  During our talk, Tanner made a statement along the lines of that he's decided that he wants to spend "what life he has" living right and enjoying his family.  The doctor told him they are going to do everything in their power to see that he has a long life.

It's those moments when something unexpected comes out of his mouth, or the reality of his situation will hit me out of the blue, that my heart just breaks all over again.



The doctor asked me how I was doing and I told her that I was doing "ok".  I have bad moments, but all in all, I do okay.  I am just so very tired most of the time.   

She told me that she thought I would benefit from some counseling myself but I have to admit, I've had problems with counseling in the past.  It's often very hard for me to open up to people, and if I'm going to be quite honest, I just don't have money to waste on counseling for myself.

Sooo, what I will continue to do is what I've been doing for the last year.  I will turn to the blog.  Hope you guys don't mind....

Sidetracked

Tanner's treatment is moving along as usual.  He's actually at his Oncologist's office this afternoon for his treatment this week.

So far, his nausea seems to be better but he doesn't have much of an appetite most of the time.  He's still walking using the one crutch and, occassionally, he may take two steps on his own without using the crutch but they are very halting steps and he can go no more than a short distance of a couple of paces.

The doctor has written a script and we need to go and get him fitted for new straps for his brace, or maybe even a new one, since his leg is getting bigger and is slowly catching up to the size of his "good" leg.

I don't think he or I either one have much hope that the leg will heal enough by January to avoid surgery, but I guess you never know and we'll see in four months.

There's been a lot of upheaval in our family this week and it's been overwhelming. Regardless of the fact that Tanner has cancer, he's still an 18 year old boy with all the pressures that entails.  There's just so much peer pressure at this age and life isn't easy. 

Marty (his nurse in Little Rock) and I talked during this last trip about the fact that she fears that Tanner is so afraid that he's going to die young, that he's grabbing onto life with both hands and maybe being tempted to do things he wouldn't normally consider doing - judging by the tattoos and ear gages that he's recently acquired (she's the mother of a son and seems to understand some of the pressures they face).

Tanner came to my office yesterday and spent some time talking to my boss, Bruce, and when we left the office he broke down and cried and told me he was sorry for a lot of things and that he realizes that he needs to start taking on some responsibilities and get his life back on a productive track.

Then, knowing that we've had a stressful week, Kirk came over to our house and took us out to eat last night and it meant a lot to Tanner.  Kirk has been a constant positive male role model in his life for about twelve years now and it means so much to Tanner when he gets an opportunity to spend some time with him.

He asked Kirk when he was going to cook some pasta with the red wine sauce and Kirk told him he was sure that could happen in the near future. These sorts of things mean so much...

Tanner admitted to me that he knows his life has gotten side tracked but that he's ready to turn things around and focus on the positive things in his life.  He is going to take more responsibility for taking care of himself, he's going to check on some of the grants and scholarships available to cancer patients, and he's also going to contact some of the cancer societies that try to help cancer patients find employment within their capabilities.

I am so ready for things to turn around.  I need some "normal" for a while....

As is often the case, I don't always know how much "honesty" I should put out here on the Blog.  I don't want to hurt anyone's feelings and I don't want people to become disappointed in Tanner, but on the other hand this blog has often become my lifeline in trying to handle everything that has happened to me and Tanner during the last year.

Just because he's a cancer patient, doesn't mean that he's a perfect teenager.  He's like many other young 18 year old males out there.  He's trying to find his way and sometimes he hits a detour.  I am just so grateful to those who stand by us as we travel this journey down Tanner's road to recovery - and to adulthood.

Back to maintenance

Well, we made it back from Little Rock this weekend.  The good news is that Tanner is still in full remission and all the tests look better than the previous tests.

The only "active" lesion is in the right femur and they say that lesion is just so big it's going to take it a while to heal.  The bone marrow in that area is "almost" normal and they say nothing to worry about.

The bad news is that Tanner's broken left tibia shows no perceptible healing since the last CAT scan done in April.

Dr. Nicholas says that he wants to wait until we come back in four months for his next re-staging tests and see if there is any improvement.  This is exactly what he said to Tanner in April so,needelees to say, Tanner was disappointed.  He was hoping to either have healed enough that they said things were going to be fine on their own, or that he was ready for surgery.  He is just ready to get rid of the crutches.

We asked Dr. Nicholas if he thought four more months were really gong to make a difference since it's already been over a year and he said that the surgery wasn't without risks and he didn't want to go there unless absolutely necessary.

After thinking about all of this during the drive home, I called his office yesterday and left a message that I wanted them to just be aware that Tanner only has a few more months on his COBRA policy after which time he will only be covered on Medicaid.  I told them I didn't know if this made a difference but that I wanted them to be aware of the fact.  After hanging up, I thought I should have probably told them he will also have another $10,000 deductible after the first of the year.  I haven't heard back yet.

The only change the doctor at MIRT made on his maintenance chemo is that they slightly reduced the steroids in an effort to abate some of the nausea and the gag reflux when Tanner tries to eat.

We are heading to Cooks Oncology this afternoon to get him back on his treatment.  I'll be sure to keep things updated.

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....

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?

X-Rays

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...

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!