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!