Tuesday, April 26, 2011

Friends Who Understand

While we were in Arkansas for Tanner's consultation (and additional tests) last week, we had an opportunity to go out to eat with some friends that we made while we "lived" in Little Rock for those six months during the most aggressive period of treatment.

Tom and Shirley rented an apartment through the "Home Away from Home" program across the street from us while Shirley and Tanner went through their chemo/stem cell transplant treatments and not a day went by that Tom didn't come over and check on us.  He always made us feel like we had someone looking out for our well being.  They made us realize we weren't truly alone all of those months (as we often felt) away from our family and friends.

Never once during that time did we ever have an opportunity to "socialize" (other than on "7C" or in the infusion clinic) so the opportunity to go out to eat during our visit last week was quite an event!

We went to On the Border (of course), and celebrated Tanner's 19th birthday - and also that he and Shirley both remain in remission after all these months!!

It was so much fun!!  I was surprised at how excited I was when we had an opportunity to meet for dinner!  When they walked through the door of the restaurant, my heart was filled with love and gladness - and as we were talking, we realized it had been over a year since we had actually seen each other...

Not many people quite understand what those months in Arkansas were like.  The long days and nights of treatment and illness... and fear...  The feeling of isolation as if your life is "on hold" while you deal with cancer, treatment, and everything that entails... while everyone else's lives back home go on without you...

They also grasp the feeling of anxiousness you experience when sitting across the desk from Dr. Barlogie - and then the overwhelming relief and joy that you feel when you hear the word "remission".  They understand that you go through those same feelings every time you sit across from that desk...

Tom and Shirley (Anastasia & Harris - and the other friends we made during that time) truly know what all of those months were like - and that fact forms a bond that will always be with us.  They will always hold a special place in our hearts...

No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth...  Robert Southey

Friday, April 22, 2011

Still In Remission

It's been a really long week... and I have a lot on my mind... but I haven't been able to make myself sit down and write about it until now...

I've settled in for the night and I thought I would try to just go ahead and put some of this into words.

Let me start by saying, Tanner is still in remission... 

They saw something on the original tests that made them think the cancer was probably back.  Dr. Barlogie was looking through Tanner's file and you could tell he was agitated.  He asked if Tanner was getting his weekly Velcade and Revlimid and I told him that he hasn't had treatment since January. 

He looked at me like I was crazy and wanted to know why in the world not.  I told him that his orders for treatment in Fort Worth had ended and that it had taken months to get the Texas Medicaid to approve Tanner's testing.  He started yelling and cursing and asking me if I didn't understand the precariousness of my son's health.  I replied to him that I had emailed him and his assistant Bonnie about the fact that Tanner wasn't getting treatment while all the insurance issues were being worked out (and they had both replied to me so I knew they were both aware of what was going on) - and he told me it was my responsibility to scream and shout and stomp my feet to make sure that Tanner was ALWAYS getting the treatment he was supposed to receive.  I told him that I had emailed his office several times about Tanner's situation and that I counted on him and Dr. Albritton to communicate with each other about the care that Tanner was receiving.  He told me that he was "one man" and "couldn't cut himself into small pieces" to always oversee all of his patient's care.  He told us that the Pet Scan report from Fort Worth indicated that there were new lesions in Tanner's bones and that "it might be nothing" or "the cancer might be back" and if the cancer was back his chances of surviving decrease 50%-60%.

He asked me why I wasn't living in Arkansas and when I mentioned my job and that I have a house he told me I needed to decide what was most important - the things I have in Fort Worth - or Tanner's life.  He was in too much of an uproar for me to explain to him my fears of not being able to support myself and Tanner in Little Rock - or the length of time it would take to sell my home - or my fears of how if I move to Arkansas and start over with a new job, who would take care of Tanner while I mainted a job if (heaven forbid) he ever did relapse and we lived there alone without a support system. 

As upset as Dr. Barlogie was, there was no talking with him at that point.  To say that he is "passionate" about his patients, is putting it mildly.

It was an emotional scary appointment and Tanner and I both ended up in tears.  Dr. Barlogie took us to Bonnie's office and they called the Chancellor of UAMS and received approval for a free bone marrow biopsy and a new PET scan.

Tanner and I endured two days of living with fear of relapse in both of our minds.  Thoughts of chemo, stem cell transplants, nausea, and fatigue were going around and around in both of our heads.

But... when the new tests were back and it was "all said and done" (like my Memaw used to say), Tanner is still in remission.

At the follow-up appointment, Dr. Barlogie sat across from us at his desk and told us that all the new tests indicated that Tanner is in complete and full remission and the "maintenance chemo" needs to continue just like he's had for the last year and that we are to come back to Little Rock in four months.  He looked at me and asked if we were going to be Arkansas citizens by then.  I told him I would do everything in my power to see that Tanner gets the care that he needs.  He hugged me and then he hugged Tanner and held him close and told him that he loved him.  Tanner replied and told him that he loved him too.

We have four months of treatment here at home to allow us time to decide how we need to procede with Tanner's future care.  Do we attempt to talk Dr. Barlogie into trying to continue to work with Texas Medicaid?  After how he reacted to the tests done in Fort Worth, I don't see him as willing to do that.  Do we move to Arkansas and find a job and a place to live so that Tanner can receive care at UAMS and Dr. Barlogie can personally oversee his care?  Or do I see if there is an experienced MM doctor here locally capable of giving Tanner the level of care that he needs to assure him the longest life possible?

We have a lot to think about....

In the meantime, my son is in "complete and full remission".  Now we just try to decide the best recourse to keep him that way...

Monday, April 18, 2011

An Unforseen Result

Well Dr. Barlogie didn't like what he saw on some of the reports from testing done in Fort Worth.  He said it could be nothing -- maybe just the difference of the Radiologist in Fort Worth not being familiar with Multiple Myeloma -- but they want to re-do his tests here in Little Rock.

So.... we are staying a few more days and they are going to do some more tests and we'll see Dr. Barlogie again on Wednesday or Thursday.

The PET scan in the morning is at 5:30 a.m.so we splurged on a hotel room near the hospital and I think we are going to settle in for the night.

Needless to say, the day didn't go as we envisioned...

Sunday, April 17, 2011

No Surgery

We left for Arkansas on Friday at 5:30 a.m. and drove straight to UAMS for our 11:30 appointment with Dr. Nicholas.

He pulled up the CAT scan on the disk that we brought for him and said things looked pretty good.  There is a small spot that isn't closed up and he pressed on the tibia where the break is and Tanner told him that was where it hurt (and is the spot where Tanner could see the bone move).  The doctor said that where the opening is, the bone scrapes against muscle but that he thinks things have improved greatly since we were in his office six months ago and that we've "waited it out to where surgery isn't going to be necessary".

He told Tanner to just be careful and wear the leg brace when he's outside and active to protect the bone.  I asked him if that meant Tanner should wear it when he is out in the front yard playing football. Dr. Nicholas gave him this shocked look, and asked "have you been playing football??".  Tanner laughed and said he's just been playing catch.  Dr. Nicholas said, yes that he should definitely wear the brace when he's playing catch and for us to come back in six months to have another look.

It was a long day and we were exhausted - but the news was good.  Tanner can now go on with his life without worrying about the possibility of surgery...  School... A job...  A more complete life...

Now we just see what Dr. Barlogie has to say in the morning when we see him.

The rest of the weekend has been spent with Aunt Tincey, Julie, Trenity, and Alston.  The kids have been gone most of the day down on the river riding four wheelers and Tanner has had a blast!  It's been like a mini-vacation.

These last couple of days spent with family just relaxing and having fun were very much needed by both of us.  Tanner had a bad day on his birthday and was in a really low mood.  We spent a few hours at the hospital for his CAT Scan and had a lot of time together in the waiting room.  We were talking about a lot of things going on in our family, our future, and his illness when he looked at me and said "Mom, I have a terminal illness".  I told him that he couldn't think like that - and that I know it's hard not to dwell on the fact that there's no cure - that I also have a hard time.  I said that both of us need to think about the fact that Dr. Barlogie has patients who have been in remission for over twenty years and that as young as he is, there's no telling how long he could live. 

He says things to me sometimes that break my heart.  We both live in fear and have to work at keeping it at bay.  Some days (many days) are harder than others... His birthday was one of "those" days.

After the CAT Scan we met my cousin at Mexican Inn and Tanner was talking and ended up in tears - but after dinner he pulled out of the depression and things have been better.  He has really enjoyed the time here with our family in Benton this weekend.  It's been a good break for him.

I'll be sure to update and let you know what Dr. B has to say tomorrow!!

"Tears are words the heart can't express."

Thursday, April 14, 2011

19th Birthday

Tanner was born 19 years ago today. 

I didn't know what was in front of us.

Wonderful days with family who would leave us all too soon.

Quiet days at home.

Vacations with cousins.. Fun in the sun...

Fishing with dad.

A frightening bone infection at the age of five (a portent of things to come?).

Then cancer... cancer... cancer...

Tears, heartache, worry, hope, determination...


Blessed Remission!!

Happy 19th Birthday Boogie!

I love you no matter what...

Wednesday, April 13, 2011

Road Trip

One more test tomorrow at 2:30 and then we are set to head off to Arkansas on Friday!  We'll see Dr. Nicholas Friday at 11:15 and then will see Dr. Barlogie on Monday at 10:30. Woo-Hoo! I was beginning to wonder if we would ever get all of this taken care of...

Dr. Barlogie's Executive Assistant, Bonnie, and I have been emailing and she said that she would love to take me to dinner over the weekend if we could.  She's a mother of four boys and I think she and I have a lot we can talk about.  She is also trying to set Tanner up to meet a young man that she knows and thinks could be beneficial for him to meet and talk with while we are there.

Tanner is a very lucky young man to have so many people care about him.

He was diagnosed with Multiple Myeloma at the tender age of 17... was originally given only a two year life expectancy by the first Oncologist that we saw... and here we are nearly two years later.

Thursday is his 19th birthday - and he seems to be in full remission with the expectation of a lot of years in front of him.

I am so thankful for the medical team that has worked with us - both in Little Rock and here in Fort Worth.  You couldn't ask for a more caring group of medical professionals.  They have ALL gone above and beyond for Tanner and I both the last couple of years.

We found out our friends, Tom and Shirley, are also in Little Rock this weekend!!  We can't wait to see them and hear what Dr. Barlogie has to say about Tanner and Shirley on Monday!

We also get to see Aunt Tincey, Julie and the kids!! 

We miss our Arkansas family and friends...

"The excursion is the same when you go looking for your sorrow as when you go looking for your joy..."

Wednesday, April 6, 2011

Beginning's End

Tanner will have a CAT Scan of the broken left tibia tomorrow (which was orignally broken in June 2009) at 1:45 at Cook Children's Hospital.  This will be the last test needed at this time.

He told me he feels pretty sure that Dr. Nicholas will recommend surgery on the bone because, he says, he can see the bone move under the skin... 

It's been nearly two years, I would think at this point they should decide one way or another if surgery is necessary or not.  Hopefully we won't hear "let's give it a few more months and see". 

Like I've said several times lately, Tanner is ready to move on with his life.

I have an agent I've worked with for over ten years... Chet-Chet...  He would call me at least once a week the whole time we were in Little Rock while Tanner went through his treatment.

He was diagnosed wtih lung cancer in December and has gone through radiation and months of chemo treatment - and seemed to tolerate everything so very well...

Yesterday he found that the chemo has spread throughout his bones and that there is nothing more they can do and that at the stage where he is, he probably only has months to live - and that the bone cancer is probably going to be painful.

I sat at my desk in tears and then went outside and walked around for a while...  He had been doing so well; everyone was sure the news was going to be good.

Today Chet called me (it's his birthday) and he sounded so good.  He told me he didn't care what the doctors say, he feels like he's got at least a couple of years left.  He isn't in any pain at all and is finally feeling better after all of the chemo treatments.

After talking with him, I can't help but contemplate life...  I get so bogged down in the negative, the heartbreak, the turmoil...  I haven't truly "lived" in a long time...

What am I doing??  I need to start living as if this is it - as if there's no tomorrow.  It's time... It's time... 

I need to find my happiness again.

Every new beginning comes from some other beginning's end...

Sunday, April 3, 2011

A Sunday Search

So, it was a bad morning.  Emotional upheaval... 

I was going to go to work later today, but it just didn't work out that way...  Too many emotions...  Too much chaos...

But...  Tanner and I went on to church this morning as planned.  We sat on the very back row (LOL) but we were there...  The music was beautiful, the sermon was interesting, and there were literally hundreds of people there.

When the service was over, Tanner walked straight to the information booth in the lobby and asked about services for teenagers his age and the lady told him they hold services for teenagers and "young adults" in a building outside of the main chapel.  He asked for brochures and told her we would be back next weekend - and he told me he wants to go to one of the young adult meetings and he thinks I should go to the adult-adult meeting (I guess that was his nice way of saying older adults without hurting my feelings).

We then went to Chipotle and sat on the patio and had a nice lunch and talked to a dad and his son who were sitting next to us - with their very well behaved Boxer named Hopper. 

Now, I think it's time to head off to the park for a long (windy) walk...

All in all, it ended up being a Sunday of revelations.  The first day in a new direction in search of happiness - or at least less pain.

Intuition is the clear conception of the whole at once...