Saturday, March 3, 2007

Update from Kelly

Hi Everyone:

Just thought I'd check-in and give everyone an update. We're about a day and a half into Cycle Three and Jeff is sleeping soundly. Poor thing--whenever he wakes up, he thinks it's a new day. He asks, "is it morning?" I then have to tell him, for example--"No. It's still Friday. It's 5:00 p.m. We've only been here for 24 hours." He feels like the time creeps by SO slowly. He rues the day that the Atavan knocked him out for two days straight. At least it made the time go faster.

Now, I'm going to spill all the juicy dirt about Jeff's PET scan. He was a little economical with the facts in his last post. He was still reeling from the anxiety of having to wait for the scan results and was disturbed by having to hear the doctor talk in such matter-of-fact terms about his condition, so I think he could only muster the strength to give you all a summary. I'm sure what he really wanted to hear from the doctor is that "You are cured! It's a miracle! I've never seen a patient respond so definitively and completely to treatment! Yahoo--let's celebrate!" Remember, Jeff is an overachiever, so he perceives anything other than a commanding success to be a disappointment. But, as the information continues to sink in, I think he is coming to appreciate how well he is doing. He didn't get the news he dreamed of getting, but he got something pretty darn close.

The PET scan showed that after only two biochemo cycles, Jeff has only one lesion left on his liver, whereas before treatment he had five! It also showed that the lesion near his kidney has gotten smaller and that of all his subcutaneous nodules (again, 5 were on the original scan), only one is still visible on the PET scan and it has also decreased in size. I think that's pretty remarkable. Jeff thinks there is room for improvement.

We were originally told at MD Anderson that Jeff had two lesions on is liver. In actuality, there were 5, but only two of those were measurable. The other three were little "lurkers" that were too tiny to measure, but that were lying there in stealth. We also learned that Dr. Legha found two additional subcutaneous nodules on Jeff's original scans. We knew that Jeff had nodules in his right chest wall, lower left back, and right hip. Dr. Legha also found nodules in his left arm and left thigh (although these had not yet made their way to the surface where they could be felt). On the new PET scan, all of these are gone except for the one on his hip which has gotten smaller.

One caveat to all of this good news is the constant threat of a latent brain metastasis. Dr. Legha will do another brain MRI after the end of this third cycle to monitor Jeff's brain because, as he explained, biochemo has a hard time reaching the brain and may not necessarily be working on the brain as well as the rest of the body. As a result, the disease can continue to grow or spread in the brain even though the rest of the body is stable. A brain metastasis would be a terrible blow because, as Dr. Legha says, "it completely fouls up our whole plan."

So, that is your new assignment: Pray for a clean MRI with no evidence of the disease in Jeff's brain! Pray, pray, pray! Your hard work has definitely paid off, so far. I expect nothing less in the future! Things really have gone as well as we could have reasonably expected them to go. And, although there have been highs (finding Dr. Legha) and lows (having to suffer so much uncertainty), I hope the "lows," if any, continue to be very minor disappointments and that none of them will be actual setbacks or things that change the course of Jeff's treatment and ultimate recovery.

I realize that we've really been very very fortunate to sail so smoothly through treatment, thus far. And although I know Jeff may not see it that way (he is tortured to be away from his kids and hates the nausea and fatigue), I hope he will find the presence of mind to be thankful for how well he is doing. He sometimes gets discouraged because all of this is so hard, and, unfortunately, he is least receptive to the things that would cheer him up when he needs them the most. For example, when he feels his worst, he can't read or watch TV or talk on the phone or do any of the things he would normally do to distract himself or cheer himself up. I suppose all we can do during those times is pray that his mind is at peace and that he has no fear. Because, I really feel like the "fear" has been the worst part of all of this. Dr. Legha asked Jeff "what has been the hardest part of your treatment so far?" And Jeff said "the fear and uncertainty." Jeff realizes that even if he receives a clean bill of health at the end of biochemo and has no evidence of the disease--it may only be "for now." And he dreads the thought of having to perpetually defend against this disease and the anxiety of waiting for the results of every scan and test he will have every few months for the rest of his life. I don't know how you learn to live with that, but I guess we'll have to figure out how. Actually, I'd be very happy to be given the opportunity to learn to live with it. I'd happily live a hundred years with that anticipation and anxiety so long as nothing comes of it!

Well, this post has gotten too long already, so I'll sign off. Before I do, though, I want to thank my Mom for coming to Wisconsin to help me with the kids! It was so great to have her there and she was a huge help-she knew exactly what to do. THANK YOU, MOM!

P.S. The baby continues to use my ribs like a set of monkey bars!

Love, Kelly


Ann R said...

Jeff and Kelly,
Glad to hear you have gotten pretty good news and into the next round of treatment. I am sure the kids are missing you and that is because you are there Hero we might need to make you a cape and get you a mask. You have been a Super Hero in this, and a man of such great courage. I know there has to be a lot of things to think about good and bad and we can not imagine but you are a mighty man. Stay strong! I am praying that you are home soon.
God Bless,
Ann Reins (Omaha NE)

Katie Clancy said...

What a nice surprise to find even more good news and more details to savor. Thanks for filling us all in. That is tremendous, remarkable news. And thank you for continuing to share the intimate details of the struggle you both face. Your letters to all really put an image to cancer and the fight patients and their families have that most of us just don't know or understand. I am sure the anxiety and uncertainty is extremely hard to live with, and I bet that is where the phrase "one day at a time" comes from. Certainly, someone who isn't going through that could give that advice. I will continue to pray for both of your peace of mind to get you through this uncertain, trying time. Again, wonderful, wonderful news and I hope it carries Jeff and you both through this next round. Lots of love, Katie

Patrick and Tracy said...

Jeff, We just popped down to the VC and had a visit with Pope Ben (that's what we call him now that we are pals) and he said to tell you "Das ist gut!" Okay, so we didn't make it to Rome yet, and haven't actually met the Pope yet either, but we did go to Austria and sing "The hills are alive with the Sound of Music" while touring the home of the Von Trapp's (it's only a 4 hour car ride away from us). Okay, so we didn't do that either, but sounded good. So, in all seriousness, all the news sounds great! Know that we never stop praying Jeff. You are almost at the halfway point.
We will talk to you all soon-
Love, Patrick and Tracy

Cathy said...

Hi Jeff & Kelly - I continue to keep you and the family in my prayers for great successes in his treatment and health for the whole family. I will also stop by The Cenacle this morning and put in a new prayer request for the sisters there, being very specific on what they need to pray for Jeff; as well as for Kelly and the baby's continued health and for strength for the whole family to make it successfully through this!

Cathy Connors

Michelle & Jeff said...

Hi Jeff and Kelly! Just wanted to say hi. Jack is watching Clifford the red dog right now while I'm eating some of the friendship bread Aubrey made. The kid's are such a joy to be around. I'm looking forward to seeing you Thursday night, Kelly. I love you both!

John & Peggy said...

Jeff and Kelly,
Just want to let you know that you are all in our prayers and thoughts. I check your blog site regularly to see how you are doing. You both do a terrific job on letting us know how you are. You should also know that you are constantly in the thoughts and prayers of the Saint Jude community.
All the best,
John & Peggy
P.S. Jeff, we really do need you back at Design Review!!!

Nicole said...

Thank you for the update! I think of your family often and am waiting for the happy news that Jeff has a clean bill of health. You are both amazing people and have touched so many people. I feel lucky to know you both. Stay strong.... We're all praying for you!!!
God bless,
Nicole Renouard

Terri said...

I'm glad to hear your optimisim. We will keep praying for a clean MRI scan. I can't imagine the stress jeff is going through with all the anxiety and uncertainity, but I truely think that when there is positive thinking positive things happen. i believe that when there is a fight to be fought and when it comes down to the wire those positive thoughts will pull a person through to the next round. Wether it be a few more days, weeks,or even years. If that person has the will that fight to really live then nothing will get in there way. "When there's a will there's a way." I know this is eaiser said than done but when you get scared and you can't read or do what ever to distract you,just think of something happy. I know it sounds lame but it might actually help. Love Terri