Saturday, April 29, 2006

Change in Plans

This week was going extremely well for Jeff...he returned to work on a full time basis and his energy levels have been great...but read on. They stopped Jeff's Neupogen (helps make white blood cells) last week and all of his blood work was back to normal. We were supposed to go to NIH for testing and clinic visit last week but they postponed the tests/visit until this week beause of the problems Jeff had getting back to normal this time. This round of chemo took a lot out of Jeff and unfortunately they let his blood levels get too low before they got him back on track. Looking back,we think they should have ordered an out of cycle blood test when things started to decline. By the time Jeff had the next regularly scheduled test four days from the previous one, things were pretty low. Luckly he's a strong man and this too he fought back from.

As for this week's tests and visits, they have added a new wrinkle. Jeff had several tests this week including the ususal MRI and CT Scans, however, this time they added an Octreotide Scan. This was a nuclear medicine study where they inject a radioactive agent that is attracted to the tumors. When they take the "pictures" it lights up the places where the tumors are still hiding. The results of this test showed that there is still a fair amount of tumor activity in the liver and from the sounds of the physicians, I think it is either much more than they would like to see or they had hoped for no liver tumor activity after these two treatments.

The Octreotide scan also showed something in Jeff's brain that they weren't expecting. Therefore Jeff has to have an MRI for additional diagnostic testing. The doctors believe that it may be a false positive but cannot confirm that until the MRI is done. All other testing was normal except for a slightly elevated insulin level. As you may remember, the tumors produce insulin so this tumor activity is still reaking some havoc on Jeff's insulin/blood sugar. However, Jeff hasn't had to take any diazoxide since the last round of chemo and even with a low appetite, his blood sugars have been wonderfully normal.

As a result of the Octreotide Scan, the surgery that Jeff was scheduled for on May 17th has been posponed. He is scheduled for an MRI of the brain on May 9th and we go back for a clinic visit on May 12th. It is the May 12th visit that we'll know the results of the MRI and what the next course of treatment will be.

Oh, did I mention that we met Dr. Richard Royal during our clinic visit on Friday. Dr. Royal is the surgeon who will be doing the surgery on the pancreas...eventually... we hope. Both Jeff and I really liked him and his bedside manner. He was very straight forward, explained things very well, and answered all of our questions.

For now, all we can do is wait and let Jeff get his strength back. He' has lost over 30 pounds in the last four months and the delay will give him time to recover a bit before the next stage. Right now we just don't know if the next step will be....surgery, another round of chemo, or something yet to be determined.

10 comments:

Anonymous said...

Well, CRAP!! That sucks! I've had all the positive, happy, uplifting things to say knocked out of me, now. Temporarily, I hope! I do hope that turns out to be a false positive. Shit. Good luck. Get better, please, Jeff, we need you here. I shouldn't be doing this when I'm tired, I guess.

Anonymous said...

Hi Honey - I'm so proud of you just keep on getting better even if its just a little bit at a time. Your are strong and a fighter. My prayers are with you constantly. God Bless. Love Mom(G)

Anonymous said...

Hi Honey - I'm so proud of you just keep on getting better even if its just a little bit at a time. Your are strong and a fighter. My prayers are with you constantly. God Bless. Love Mom(G)

Anonymous said...

Jeff,

Hang in there brother. This is bound to be a hilly road to recovery with days of good news and days of not-so-good news.
We're praying for your speedy recovery up in Syracuse.

Rob & Lisa

Anonymous said...

Hi Jeff,

Nothing ever happens the way we think or plan, it is always in God's time and place. I know the ups and downs of this path are not easy but with your winning spirit and love for life, it will be ok.

I know this can not be easy on Linda and the kids but they all are a wonderful example of the love you all have for each other.

I continue to keep you all in prayers each and everyday and not a day goes by that you are not in my thoughts.

I love you all very much and I am here if I can do anything at all.

Love always, your cousins Colleen and John

p.s. The Red Sox continue to do well with you routing for them. Go Sox.

Anonymous said...

Jeff, Linda, Brittney and Bradley,

You are all in our thoughts and prayers.

Jeff, glad to see you out and about the other day, you looked great. Ongoing prayers for your recovery and for strength to get you through the rough road back to good health.

Linda & kids, we haven't seen you guys in a while, I hope, under the circumstances, you're all doing well and hangin' in there. I know it is very diffucult worrying about and watching those you love feeling yucky, ours prayers are with you also. Please, please, please let us know if you need anything.

P.S. from Bill:
Jeff - Bill said he will be a good neighbor and come over to drink the beers left in the frig. for you so they don't spoil!!

Jackie & Bill

Anonymous said...

Jeff,

I just hung up with Bill and he was telling us he had just spoke with you on the phone and you sounded great. I sent a blog to you guys a few weeks ago but I am not sure if I did it right and it went through. Bart and I think of you guys all the time. I know this is a hard road to travel, but you are and have always been so strong and positive and I know that it is that strength that will see you through this.
As Bill has said we have been dealing with alot of illness in the past few years and will help in any way we possibly can.

We miss you guys so much and have been terrible at keeping in touch but think of you often. I will try and reach you guys this weekend and see if we can catch up.
Our home phone here is 402-614-6236 and our email is jbreabe@cox.net

Stay strong and know that you, Linda,Bradley & Brittany are being prayed for all they way from Nebraska.
Love,
Judy & Bart

Anonymous said...

Just wanted to let you guys know we are thinking of you on MRI Day! Remember God never gives you more than you can handle. Keep the faith!
Kim and Steve

Anonymous said...

Jeff, it was good seeing you last Friday. Sorry to read about the setback. Just stay strong and I'll keep you and your family in my prayers.

JP

Anonymous said...

Dear Jeff & Linda - Hope it was all good news yesterday. Our thoughts and hopes are with you always (and they'd better be behaving themselves!).

J&R