Thursday, February 28, 2008

It's official, we got the party started today.

We went to the clinic today and the minute we hit the door we saw the spouse of a patient that was here during our last tranplant. I didn't get to speak with her, but she can only be here for one reason. I am so sorry for them and look forward to talking to her.

Our APN is Sara. She used to be Dr. Barlogie's nurse before she moved over to the bone marrow unit. She has always been so sweet to us. There's a special bond between Sara and our family, and she is so great about taking time to teach us things by going over anything we don't understand. We love her. She'll be our nurse for a few days, but then she's on an inpatient rotation. It was really good to see her today.

One of the hurtles that we had to "jump" was that they wanted Frank to be scheduled for surgery to install a triple lumen line instead of using his port. He put his foot down on this issue and just said no. Frank gave them the, "You've used his port for the other 3 transplants and it has never been an issue before. Besides this port has never given me any trouble, etc. " speach and they gave in.

So, fast forward to today and they take him back to get his vitals. Insert needle, push saline, drawn back on the port and what do you know... his port won't budge! (funny huh Ginger?) Frank laughed as he breathed deep, rasied his hands and turned his cheek, even sat upside down for them. Finally they got it unclogged, so to speak. And I think he'll be fine.
Frank took some fluids, Melphlan, Velcade, and then got his chemo bags on; now he's good to go.

Sara took this picture for us in the waiting room. Look behind us at the picture board. There are pictures of Frank's 2nd and 3rd transplant still pinned up there.

Love to you from Arkansas.... we are peaceful, thankful and grateful.


Wednesday, February 27, 2008

Hello All,....

Today Peggy and I got a good bit accomplished, but we experianced even more frustration with this process. After being told (last night) that I was approved by Humana to proceed, we were asked to show up at the clinic today to get started.

However once we sat down with the coordinator we were informed that the stem cell transplant schedule was booked up. To make a long story short - I have to wait till Thursday to start taking chemo. Disappointed yes, but at least we got the schedule set and there are no questions left to ask.

So tomorrow we're putting the cancer cells on notice and we get this show on the road.
I have said it before but it is worth repeating ...thank you's go out to everyone for all the support and prayers. Just getting here has been quite an ordeal but because of all of you, we are as ready as we can be.


Tuesday, February 26, 2008

Good morning.... Not being a morning person, this will be quick.

It's 5:15 am.. (yawn). We are about to leave for Little Rock. Frank went down yesterday for his ECHO and MUGA scan and then came home.

We had a sweet night with the kids and friends. Frank and I went to Zach's soccer game. Zach gave us a good going away happy by scoring 2 goals! We won 2-0, so that was pretty cool.

He has a pulmonary scan at 9 and we see Dr. Barlogie at 12. I'm tired of guessing what happens next. It's been such a long wait.

We still need insurance approval. The results of these 3 scans have to be submitted. Let's pray this happens quickly.

We are going to check in to the apt, drop off some stuff and plan on coming home tonight. Then we'll pack the rest... and get the party started.

Todays K-Love verse is Ps 23:1. The Lord is my shepherd. I have everything I need.
Oh, so true!!

Sunday, February 24, 2008

Amazing..... It's been a long time, but we are finally getting somewhere. The hold up was actually with UAMS. But we still don't have approval.

We leave in the morning for Little Rock. Frank needs at least 3 more tests: ECHO, MUGA and pulmonary function. I don't know if there are more or not.

And things got set up at 5:00 on Friday so we don't really know when the test are. Because of that, we are thinking we may drive back tomorrow if we can and stay one more day. If it doesn't work out, we'll just stay. We get the apt on Wednesday.

For you Memphis folks, Chandler wrote an editorial to the paper and it got printed in today's paper. Check it out.... We found out about it from Frances.. one of her friends called her. Small world, huh?

Well let you know when we know!

In His grace, Peggy

Wednesday, February 13, 2008

Everyone is asking if we have any plans yet. The answer is "No, not yet. We are still waiting on insurance to approve the transplant."

UAMS emailed us and told us Humana was requesting a Hep B, C and AIDS test. Ummmm, Okay? Get right on that!

Frank emailed our doctor here and told them he's always been curious as to whether he had aids or not. Now he'll know for sure!

Here a little funny about insurance while we're on the subject..... love to all.

Medical Insurance Explained:
Q. What does HMO stand for ?
A. This is actually a variation of the phrase, "HEY MOE." Its roots go back to a concept pioneered by Moe of the Three Stooges, who discovered that a patient could be made to forget the pain in his foot if he was poked hard enough in the eye.

Q. I just joined an HMO. How difficult will it be to choose the doctor I want?
A. Just slightly more difficult than choosing your parents. Your insurer will provide you with a book listing all the doctors in the plan. The doctors basically fall into two categories: those who are no longer accepting new patients, and those who will see you but are no longer participating in the plan. But don't worry, the remaining doctor who is still in the plan and accepting new patients has an office just a half-day's drive away and a diploma from a third-world country.

Q. Do all diagnostic procedures require pre-certification?
A. No. Only those you need.

Q. Can I get coverage for my pre-existing conditions?
A. Certainly, as long as they don't require any treatment.

Q. What happens if I want to try alternative forms of medicine?
A. You'll need to find alternative forms of payment.

Q. My pharmacy plan only covers generic drugs, but I need the name brand. I tried the generic medication, but it gave me a stomach ache. What should I do?
A. Poke yourself in the eye.

Q. What if I'm away from home and I get sick?
A. You really shouldn't do that.

Q. I think I need to see a specialist, but my doctor insists he can handle my problem. Can a general practitioner really perform a heart transplant right in his/her office ?
A. Hard to say, but considering that all you're risking is the $20 co-payment, there's no harm in giving it a shot .

Q. Will health care be different in the next decade?
A. No, but if you call right now, you might get an appointment by then.

Saturday, February 9, 2008

Chandler with Frank at her Valentines dance.

Friday, February 8, 2008

Well, What a week this has been. But after 3 trips to Little Rock, we have a plan.

The fine needle aspiration showed 20% myeloma plasma cells in the lesion. It is a confirmed relapse as Frank said earlier.

Dr. Barlogie wants to do another transplant. But not like one he's had in the past. The other transplants are Melphalan (chemo), then stem cells to follow. This time he wants to use a combination of chemo that he's had before: VTD-PACE (all of the letters stand for a different chemo med) PLUS Melphalan, and then stem cells to follow. Sounds tough doesn't it?

Well, the good news is the he's using a reduced dose of 2 of those drugs. So, we're going to call this a Mini-Tranplant. Sort of like the 100 calorie snacks! Just enough to do the job, but not so much we wish we'd never had it!!

Dr. Barlogie is so so busy. He usually has someone on his heels that trying to learn from him or help all around him, etc. But he came in alone and no one bothered us. We had a good long time to talk about all our concerns.

We'd been told in the past that statistics show each remission shortens. Dr. Barlogie told us that was nonsense!! He said he has a patient that has had multiple relapses and she's been in remission for 5 years now since then. Frank asked him if we were running out of options ~ and his reply was "no no no no no."
So, for the first time all week, we came home a little lighter on our feet and more encouraged than we had been so far.

As soon as we hear from insurance, we'll get our schedule to return. Frank has some work things he wants to get done before we leave.

Please pray for insurance to cover this transplant. For the kids as they deal with this, for all details to fall into place as we plan to be gone 3-4 weeks.

"Now to Him who is able to do far more abundantly beyond all that we ask of think, according to the power that works within us; to Him be the glory in the church adn in Christ Jesus to all genereations forever and ever. Amen" Eph 3:20-21

Monday, February 4, 2008

Hello Everyone:

Today was definitely one of those days that I would like to have a re-do on.

In many ways Monday February 4th was just not a good day for the Carlton family.

Peggy and I went back to Little Rock this morning with the hopes that Dr Barlogie would pat us on the back and tell us that the “spot” that appeared to be non-cancerous back in November/December was just that, non-cancerous. And, we had hoped that the last round of chemotherapy had done a number on the cells and the site had gotten better.

Regrettably, Dr. Barlogie had to tell us the exact opposite…my cancer has returned. In addition the original site has grown and there is also second lesion now.

We will be traveling back to Little Rock on Tuesday for a fine-needle aspirate of the lesion (for all you in Alabama this means they are going to stick me with a long, thick needle and suck stuff out of my bone marrow & it hurts) and then return on Thursday to get his recommendation for treatment options.

It’s about 9:45pm as I type this note and my brain is just now getting wrapped around what I am about to have to go through - the treatments, the time away from family and friends, missing church, missing work (hey I like my job), and the host of other “normal” activities that feeling cruddy and being severely immune-O-compromised takes one away from. If I didn’t already know that we can beat this thing, it would make me depressed.

However, my experiences tell me that this can, and will be something that can be overcome. God has allowed me to enjoy His good graces before and I must trust that He will do so again.

It will probably come as a bit odd, bit I thanked God tonight as we all sat down for dinner. Ephesians 5:20 tells us that ‘in all things we should be thankful’….so I thanked God for this terrible day. I thanked Him for the blessings that I have already received from all of you (yes, you know who you are) and for the fact that this gives Him another opportunity to show us all how great a God we serve.

We will share more as we know it, but for now I gotta go get some sleep. Tuesday is going to be another long day.