Testing

Tanner has had MRI's done two days in a row now.  Tomorrow he has a PET Scan in the morning and then another MRI in the afternoon.

I've emailed Dr. Albritton's office to ask about doing an x-ray and possible CAT Scan of the broken left tibia (since that is what Dr. Nicholas always wants to see when checking for healing progress) but haven't heard back from them yet.  I just don't want to get to Little Rock and they pull up the tests and need something that wasn't ordered.

The nurse told me that it shouldn't take long to get all of these tests on a disk after the Radiologist reads them and then they will overnight them to Little Rock.  I asked if we should schedule our appointment for next week or the week after - but haven't had that question answered yet either.

My thinking is I should probably just go ahead and schedule for two weeks from now to allow for any unforseen delays in getting the results processed and sent to Arkansas. 

Tanner and I both are just so ready to move on to the next phase of his treatment - and our lives...

We've had some long conversations the last couple of days going back and forth from these tests and Tanner tells me that he knows our extended family has pretty much fallen apart and that he's so very sorry for any part he's played in our difficulties.  I was driving during that discussion and ended up in tears and he reached out and took my hand and said that he wants me to know that he loves me very much - and that no matter who might walk away from us -  we have each other. 

Sometimes, he's this rebellious 18 year old who drives me crazy, sometimes he's this sick young  boy who scares me to death, and sometimes he's my sweet baby boy whom I love so very much.

I told him that I still feel like he needs to make some new friends and he told me that he thought I did too (LOL).  He said that he thought it's time for both of us to make some of those changes that we've talked so much about over the last year and a half - so this Sunday we are going to go to church...  It's been a while...

There is a large nondenominational church called McKinney Bible Church that has a large youth group and several adult groups.  We've decided to give it a shot and, hopefully, it will open us both up to meeting new people.  Tanner is so outgoing, he won't have any problems at all making new friends.  I think this will be a positive step...

Dr. Albritton did tell me earlier this week that she has no worries about these tests at all.  She feels completely confident that he's still in full remission and, at this point, we need to just see if the broken tibia is going to require surgery or not.  So, no matter how rough the last couple of years have been (and it's been a roller coaster ride of emotions), we need to try and focus on the positive - and remission is about as positive as we can get.

Life can either be accepted or changed. If it is not accepted, it must be changed, if not changed, then it must be accepted...

In the Real World...

Thinking, thinking, thinking... and not sleeping...


We all have dreams.  I had dreams for my life.  Tanner had dreams for his life.  Cancer intruded...


Harsh reality faces us every day and we continue to make our way the best that we can.  Sometimes our world goes astray and we have to rearrange our plans, our expectations, our dreams... and we go on.


In dreams we do so many things
We set aside the rules we know
And fly above the world so high
In great and shining rings

If only we could always live in dreams
If only we could make of life
What, in dreams, it seems

But in the real world
We must say real goodbyes
No matter if the love will live
It will never die

In the real world
There are things we can't change
And endings come to us
In ways that we can't rearrange...

In the Real World - Roy Orbison

Tests are scheduled

They have finally scheduled all of Tanner's tests for next week. 

Radiology Associates here in Fort Worth won't scan more than two areas of the body per session so they have split up Tanner's MRI's into three days (possibly four if they add another test that they are trying to ask Dr. Barlogie about). 

He will have the first MRI on Tuesday the 29th at 6:00 p.m. so he'll get to eat a lean lunch and then nothing until after the test that afternoon, on the 30th he will have the second MRI at 6:45 a.m., and on the 31st he will have a PET Scan at 11:40 a.m. followed by another MRI at 4:30 p.m. - which means he won't be able to eat that day until all the tests are done.

I don't know what is worse, having one or two MRI's at UAMS that last 5-6 hours per session or having to go back day after day for continued scans...  I would think several days in a row of MRI's will be harder on Tanner and I both...

 The scheduling lady at Cook's Oncology Department said they might have to add another MRI (meaning another day) to what's already scheduled because Dr. Albritton has a question about one of the scans and needs to contact Dr. Barlogie to find out if it's necessary.  That statement has me a little worried because I know Dr. Barlogie.  If he's scheduled a test, then he's going to want the test to be done.  If they don't do all the tests as he's ordered, I'm afraid we are going to get down to Little Rock and he's not going to have everything he wants; which is why, I'm sure, he would rather all the tests be done at UAMS.  That way, he has control and everything he needs will be right there at his finger tips.

I'm hoping that if all the tests can be performed next week, we'll be in Little Rock by the next week.  Tanner and I both are so ready to find out what the second year of "maintenance" will consist of...

Yesterday was my 49th birthday.  49....  Oh boy...  Let's just say I shed a few tears yesterday while sitting at my desk. 



It's not just the age thing.  I have a hard time with my birthdays...  I always think about my mom, dad, brothers, memaw, aunts and uncles that have all passed away.  I think about my family that has grown apart...  I always get melancholy on my birthday for what has been lost.



It wasn't all bad, I pulled myself together and I celebrated with those closest to me.  I've thought about it and I would say, if you're able to celebrate your birth with the people you love more than anything else in this world, you would have to consider that a good birthday...

Trevor helped me work in the yard Saturday morning and cleaned up my car as his gift to me.  Tanner, as his gift to me, took me to lunch (On the Border, of course) and then spent all afternoon just hanging out with his mom - and I ended Saturday with a late night walk under the "super moon"...

I spent hours Sunday working in my flower bed with my grandson, Beckett, and he loved helping me dig up the decorative rocks that had settled into the dirt over the winter - and I was given a nice shiney blower so that I could get all the leaves out of my flower bed without having to rake for hours on end...





Yesterday, at work,  we had carrot cake and Qdoba for my birthday - and then last night I was taken out for steak and veggies!!  All in all it was a very nice birthday spent with those closest to me.

But next year is 50...  Think I will just run away for that one...

“I laugh, I love, I hope, I try, I hurt, I need, I fear, I cry. And I know you do the same things too..."

Waiting on the Schedule

The appointment lady from Dr. Allbritton's office called yesterday and said they were in the process of scheduling all of Tanner's tests.  She said Cook's in Fort Worth was really booked up and wanted to know if I would mind taking him to Hurst to have the tests done because they have a lighter schedule and could get Tanner in more quickly.

I told her I didn't mind where they were done as long as we could get them performed as soon as possible.

Later she called back and said that Cook's in Hurst didn't have the capability of putting all the tests on a disk so they were going to need to be done in Fort Worth which, in turn, means that they can't be done until next week. 

Now I'm just waiting for them to call me back and give me the complete schedule so that I can call Little Rock and make Tanner's appointment with Dr. Barlogie and Dr. Nicholas. 

Wouldn't it be nice if we could schedule them both on the same day?  Last time they wanted us to see Dr. Nicholas on Friday and Dr. Barlogie on Monday...

My boss told me it would probably be just a one day trip to AR this next time and I told him I didn't know how easy it would be to find a day where we could see both doctors - and that I also have to have time to make my aunt some quiche... LOL!  Tanner and I both really miss her, Julie, and the kids!

I've actually not even seen Tanner in two days (Spring Break and all the kids are in from school).  When I'm home, he's gone and vice versa.  I'm hoping he will make it in before I go to bed tonight...  I guess he doesn't much need his mom any more... (Ok, he just came in and gave me a kiss and told me for my birthday on Monday, I can have an afternoon with him this Saturday. LOL!)

I only slept four hours last night so I'm hoping tonight will be a better night.  Maybe it's age that's causing these difficulties sleeping.  I see 49 staring me in the face next week... 

I'm still working to pull out of the depression.  Now that the time has changed, I have daylight for a while after I get off work so I stopped at the park and went for a walk tonight and then went to eat at Mexican Inn (good thing I had the walk first!).  For the most part, I seem to have a better handle on things right now.

The future is no place to place your better days... Dave Matthews Band

A call from Dr. A

All in all it was a good Friday...  I made myself get up and go out for a while tonight instead of just coming home to a book and my bedroom.  Part of the whole "get a life" and "enjoy 15 minutes of happiness whenever you can" thing...

I've been so immersed in misery, worry, and depression, that these last several months have been some of the hardest of my life. I've promised myself to take an active role in making myself stop all of the self pity and find some happiness in this life.  It's time to heal...

Tanner and Trevor are in Abilene with their dad and Tan texted earlier that they will probably be home sometime tomorrow.  I love my boys, but it's been great to have a few days to myself!

I went out for dinner this evening and when I got back in my car and checked my voicemail, there was a message from Dr. Allbritton...

GOOD NEWS!! 

Tanner's tests have ALL been approved and will be scheduled for next week.  On her voicemail she said she wanted to call and let me know so that I could have as good a weekend as she will knowing that this has been taken care of!!

She and the staff at Cook's Oncology Department are the best!!

To live is so startling it leaves little time for anything else... Emily Dickenson

Waiting, waiting, waiting

I took Tanner to the doctor yesterday morning and they did a full lab workup (since he hasn't had treatment or labwork since January 21st).  Dr. Albritton said that her insurance department misunderstood her instructions regarding Tanner's needed scans and they thought she only wanted them scheduled, they didn't understand that they needed to be pre-certified.  This means that they hadn't done anything in regards to trying to get Medicaid to cover the requested tests.

She said she hopes they can get everything taken care of this week so that the scans can all be performed early next week.  I guess we'll see...

She also talked to us about the option of moving to Arkansas so that Tanner can have smoother continuity of care for his Multiple Myeloma.  She said that she understood Dr. B's asking us to consider the move since Tanner's healthcare for the next 3-5 years is of paramount importance - but that she also understands that if we go we would lose our support system. 

When I think about packing up and moving to another state, I think of who all we would be leaving behind and I wonder how we would do on our own in Arkansas... 

Tanner has lost touch with many of his friends since he's gotten sick and graduated High School and most of my immediate family have passed away.

I have my friends, Donna and Sandy, who have been there with me through it all for over 35 years now, I have my cousin Kirk, I have Tanner's grandparents Jane and Jerry, I have my friends that I work with, and Tanner has his brother, dad and step-mom...  They all comprise our core support group.  I don't know what we would have done without any of them this last year and a half.  If we move away, could we make it on our own in a new state?  Would I be able to make new friends, especially considering what an introvert I am?  Am I being selfish even considering my ability to make friends when my baby's health, and very life, could be on the line?

There are just so many things to consider - though Tanner did tell Dr. Albritton that he is completely open and ready to move away and start over in Arkansas (or even just on the other side of town) and she said that maybe this is what we both need.  A new start in a new place.  She asked me if Dr. Barlogie had said they could help me get a job and I told her that his assistant did actually email and say that they have a lot of contacts and that they felt they could work things out for me and Tanner both.  Another essential thing to find out is if any new employment would pay enough for me to be able to support myself and Tanner.  Starting over would not be an easy thing to do on my own...

I told her that I wanted to make an informed decision.  I asked her if she knows what doctors are available in the Metroplex area that have MM experience and she said that there are several at Baylor and Southwestern Medical Center in Dallas that would have extensive experience.

She said, and I agree, that at this point we just need to get Tanner's scans all pre-certified and perfomed, send them to Dr. Barlogie and Dr. Nicholas, and get Tanner back to Little Rock as soon as possible so that we can get their recommendations for what is next in regards to his medical care at this point.

She said that she would be more than happy to continue Tanner's treatment, whatever that will entail, once she finds out from Dr. Barlogie what that treatment needs to be.  Being able to continue Dr. Barlogie's plan of treatment would buy us some time to get Tanner started on his next phase and then we can start checking out doctors here locally so that I can make an educated decision about if we should stay here to continue Tanner's care, or move on to Arkansas.

In regards to Tanner's broken leg and the possibility of surgery.  I told her the nurse in Dr. Nicholas' office didn't talk like having surgery in Arkansas was going to be much of an option.  The nurse had said that in order for Tanner to have surgery at UAMS many people would have to be on Texas Medicaid (anesthesiologists, pathologists, etc...) and that the best thing to do will probably be to have treatment for the broken bone in Texas.  Dr. Albritton said that she would just like to get his recommendation since he's the one who has been overseeing the care regarding the broken tibia all this time and then, if surgery is in fact his recommendation, we can get him to an Orthopedic Surgeon who has MM experience.  Even if that means we need to go to MD Anderson to have it done.

So....  at this point everything is still pretty much up in the air and we are just waiting to see what all the scans show, if and when they are approved and can be performed.




The doors we open and close each day decide the lives we live...

What can I say

When you're young and you consider what you're going to be "when you grow up", you have all these grand visions...

Believe me, I never once envisioned where my life is now.  Sometimes the pain and fear is so great, I can barely breathe.  Like now...

I went out with my friend Donna tonight and I had a good time.  We laughed and laughed - and all the time deep down inside me is this great welling pain.  I come home and, once again, lock myself in my bedroom for another night.

Sometimes, it's almost more than I can bear to just place one foot in front of the other.  I have to make myself get up and go through the motions and I keep waiting for things to ease. I keep thinking tomorrow will be a better day.

You have beautiful babies and you wonder what they will be when they "grow up" and you never consider one of them will fight great demons of mental turmoil and no matter how much you try, you can't "fix him".

You have these dreams and plans for your life and then you walk into a doctor's office one day and they tell you your baby has incurable cancer.

You try to get him the treatment that he needs to save his life and you have to fight these insurance companies every step of the way.  The doctor says he needs all of these tests and the insurance company says no, there's no need for tests because the cancer doesn't seem to be worsening or progressing.

You wake up one morning and you get an email from the doctor and he tells you that it is "crucial that Tanner receives the best medical care possible for the next three to five years especially" and he asks you if you will pack up your son and move to another state so that he can receive that care.

You're born into your family and you think they will always be there and then they die too early, or you grow apart...

There are people you love and who love you and you think they will always be there for you and then one day you turn around and they are gone - and there you are...

Here I am...

Bronchitis

Tanner seemed to be getting over the illness that hit him last week but woke up this morning without a voice and feeling a lot worse.

We went to his doctor's appointment a 1 p.m. today and Dr. Albritton didn't like the way his chest sounded (or the fact that he was coughing up blood) so she had them give him a breathing treatment and then sent us upstairs so that he could have a

 chest x-ray.

She said that the x-ray didn't show pneumonia yet but that he has a bronchitis-flu thing and she prescribed a Z-Pak for him.

Her nurse told us that they lost two patients last year to the flu (one who had already completed chemo and was cancer free) so we needed to be really careful of Tanner's immune system.  They explained to him why it's so important for him to take his antibiotics every day like he's suppose to.

She told us if he isn't better, or if he gets worse, in the next 48 hours he needs to come back in to the office before this weekend.  She also said that they couldn't do his blood work today because the results wouldn't reflect accurately with him so sick.

She also talked to me about the insurance and hopes that the reason the tests are being denied by Medicaid is a "wording" issue with the way they are being submitted and that she's going to see what her insurance department can do - but that the tests will probably have to be done in Texas.  I told her at this point, I just want the tests done.  I don't care in which state they occur.

We crucify ourselves between two thieves: regret for yesterday and fear of tomorrow. ~Fulton Oursler

Honesty??

The Medicaid coverage situation is still stalled out.  I exchanged several emails yesterday with Dr. Barlogie, Bonnie, Caleb, and Sandra Wilson (all at MIRT in Little Rock) and they are working on getting the denial for the requested tests overturned.

I've had some people suggest just moving Tanner's care strictly to Fort Worth/Dallas but actually, from what I understand, the denial has nothing to do with whether the tests are performed in Texas or Arkansas but are instead based on the fact that Medicaid doesn't think there's reason to do further tests at this time.  I don't think it would do any good to try and change doctors at this point at all.  In fact, it would probably slow things down even further to start over with some other practice at this juncture.

Dr. Albritton's office contacted me today and she wants to see Tanner tomorrow since things with Arkansas have stalled out.  It's been three weeks since he's seen a physician or had any kind of treatment and she feels that he needs to come in for a consultation. When I told Bonnie at MIRT that we were going to see Dr. Albritton tomorrow, she asked for me to have them do full labwork on Tanner so that they can check the status of his Mutiple Myeloma since he hasn't had treatment now for three weeks.

Some kind of flu bug made it's way through my household and, of course, it seemed to hit Tanner harder than it did any of the rest of us.  He has been really sick and he and his brother, Trevor, spent most of their time in bed or on the couch all weekend long.

He seems to feel better today and he and Trevor are cleaning up our back yard and enjoying the beautiful weather while they can.

I'm sure most everyone must get tired of hearing me complain and whine on the blog about all of my worries, but I've been in a really bad place mentally for a long while now.

One of my cousins asked me the other day what happened to my "enjoying the moment" and not worrying so much but, no matter how much I might wish otherwise, I seem to have a hard time not obsessing about the future - or even the past - even though I know there isn't much I can do to change the facts of my life.

I'm sure it's been pretty obvious from many of my recent posts that there have been issues in mine and Tanner's lives over the last several months.  Our extended family has fractured and this feeling of sadness and worry just permeates most of my waking moments.

I've come to realize that I base much of my happiness on other people.  People who I love and who have come to mean so much to me over the years.  The loss, and potential loss, of these loved ones has caused me to reflect on my life...

Am I happy with who I am?  Are there things I need to change in my life that might make me a healthier person?  How do I become a stronger individual?  How do I become happier in myself?  How do I learn to stop worrying about what I can't control? What does it take to become content in yourself and not count on others to make you happy?  I'm nearly 49 years old and I'm still a mess; a work in progress...

I've gone back and forth about how much honesty, once again, to put out here on the blog.  I don't want to hurt anyone in my family when their friends and family read something here - but on the other hand, I'm a pretty open person and have found that venting on the blog seems to help me in so many ways...

Last year Tanner was given prescriptions for nerve and pain medicines.  As you can imagine, facing cancer can cause some serious depression and anxiety - thus the need for the nerve medications.  Also, having over a hundred cancerous lesions in the bones throughout his body and a broken leg that just won't heal, resulted in some deep rooted pain - and so pain pills were also prescribed.

I'm just going to put it out here simply; Tanner became addicted to these medications.  We've faced the issue and with the love and support of his family and some counseling and care by his doctors (who have been told everything), social workers, and counselors he's been doing quite well for several months now...

This last year Tanner saw, up close and personal, how addiction can, and does, impact our family.  He's realized that he's not the only one who has to face the repercussions when he makes a mistake or a thoughtless decision.  He's seen some serious pain...

For months now, he's been doing very well.  He's trying his best to turn his life around, help me around the house, and be the person that we all know he can be.  He's not perfect, but he is a sweet, good hearted young man and I couldn't love him more.  I think he's going to be okay...  I need for him to be okay...