Good news just got a little better

I spoke this week with Steve Wei, the physician assistant of my surgeon. My case was inadvertently presented to two different conferences (once by Dr. Hoff and once by Dr. Vauthey). This gives everyone more confidence as both teams came up with the same conclusion. The nodule has become less of a concern, because both teams studied my CT scan history and noticed that the size of this nodule has been shrinking and growing - it was smaller in Dec 2003 and Mar 2004, but was as big a year ago as it is now. They aren't sure why, but this made them all the more assured this is not a cancer recurrence. I offered to Steve that it might have something to do with baseball season, but he didn't think so. Also, the preliminary thought that there was scar tissue was a misunderstanding of some sort. The official report says all the biopsies showed normal, healthy cells.

The conclusion of the matter - definitely no more biopsies on the nodule and I don't need to go down there for three months instead of two. "October" sounds so wonderfully long from now.

Last night Christine and I got together with some family for a small celebration. We should have taken more photos, but Mark did take this shot of Avery, Jordan and Jeremy. They seem happy about the news, don't they?

NED

I met with Dr. Hoff yesterday and he has decided that I will take no more chemotherapy. Thus, I am done with treatment and am considered to be in "complete remission". The term he used for my status is "Stage IV cancer, NED". (No evidence of disease). It is an oxymoronic term, as Stage IV is cancer at it's worst, but NED indeed starts with a capital "N". I shall bear the label gladly.

I now begin a period of returning to MDACC often so that they can watch carefully for any recurrence of the cancer. This will be something I will be doing for a long time to come (hopefully!). At the start, I will go down there two months from now. I went through a similar process after I had bone cancer as a child.

As for the lower abdomen nodule that seemed to grow, they have no explanations. The biopsy showed some scar tissue, which was perplexing because I did not have surgery there. This is something they just want to keep a close eye on.

I was a bit surprised Dr. Hoff decided against chemotherapy. The bottom line for him is that there is no good evidence that more chemotherapy at this point would make any difference in long term survival. Some doctors give as much as they can get away with -- "just to be sure". (Reminds me of the motto of a certain father-in-law - "anything worth doing is worth overdoing.") Dr. Hoff's response to this is "show me the data." If there were no detrimental effects of the chemo, he said he might be inclined to give me more. But the Xeloda I took after liver surgery was really wearing on my liver. Not only did the CEA climb, but my liver enzyme numbers were telling a story that the drug was damaging my body. To Christine and I, he seemed overall to be making the most life-affirming decision.

Dr. Hoff tells me that there is about a 50% chance that I am cured. We will not know until years have passed. This is far better than the dismal numbers (under 10%) I started out with. I thank you all for your earnest prayers for me. Would you continue praying that this will not return?

"Good news"

When Dr. Vauthey opened the door to the examination room, it ended a nine-day grueling wait. "Good news", he said. All six biopsies tested negative for cancer. I sat stunned, overwhelmed with relief, gladness, and thanksgiving. After the short conversation and departure of Dr. Vauthey and his cohort, Christine and I sat there quietly for a moment. There were no words. Together we whispered "Praise God from whom all blessings flow..."

Around here, there always seem to be cautious nuances to be made, and this case was no exception. It is possible that the six biopsies missed the nodule. As you may recall, it was nearly impossible to see the nodule with the ultrasound. But that is why the doctor took six shots at the area. Also, there was an odd finding of scar tissue in the area. This area happens to be one of the places where I have actually not had surgery before, so that remains an unresolved question. Because of these two issues, my case will once again be presented at the weekly GI oncology conference next Tuesday to determine whether further investigation is needed. Dr. Vauthey indicated that he is content that we are not looking at a recurrence and that I will most likely not need any further investigation at this time.

We will stay here through Monday, when I will meet with Dr. Hoff to chart out our plan of attack from here and decide whether more preventative chemotherapy should be taken at this time.

The past week has been one of intense struggles deep in my soul. Parts of my mind were constantly in combat with others. Trains of thought were stopped by reminders of truth, which were in turn undercut by chaotic deconstructions. The dark cloud of death, which is ever present in all of our lives, seemed so close to me. Engaging in intentional distractions or platitude thinking only seem to make things worse for me. I need something stronger. Scripture was usually the place where stability could be found. Additionally, my wife and my dear friend pastor Robert Cook from Christ the King Church helped me in my deep tactical maneuvering. Also helpful were expressions of support from those sharing my burden - the Jonssons and Ragans, my family, and many others of you. I believe that I reached a rare quiet point of spiritual victory the morning of the appointment. That morning was quite sweet even though I did not know the outcome of the test.

It is only after the battle that I realize just how difficult the struggle was. In the hours since the appointment, every ten minutes or so, I breathe a hearty sigh and drink gladness that this particular battle is over. I look back on this week with great thanksgiving. I believe I have a greatly improved arsenal of applied Christian truth. I believe it was a very cathartic week... a time of getting to know myself clearer and my Lord closer. This is a good thing, as there will be more battles to come.

Procedure complete. No definite results.

Dr. Lee performed the procedure this morning after my vital signs proved to be normal. During the colonoscopy, he hopefully obtained useful tissue samples of the nodule. I say "hopefully" because it turned out that not only is the nodule in an "obscure" place, but it appeared nearly the same as the surrounding tissue on the ultrasound. Thus, he couldn't tell where to aim the biopsy needle. So he took six biopsies in all, using last week's CT scan images as a guide. I am reminded of the blindfolded guy who throws daggers at the spinning girl, but I doubt Dr. Lee would put it that way. He really does seem to be a fine doctor and he probably got the samples he needs. With all the searching and numerous biopsies, the procedure took two hours. That is about the duration of my original colon surgery! It made no difference to me, as I was peacefully tripping on ether.

I will probably get the results tomorrow or Friday. If the results of the biopsy are inconclusive -- get this -- we'll do the procedure again next week using a CT scan machine to guide the doctor in where to shoot the needle. The nodule appears more clearly on the CT scan than on the ultrasound.

Looking at the shadowy ultrasound printouts, I couldn't avoid the melancholy train of thought that this machine ought to be used for looking for babies, not for blobs of cancer.

Dr. Hoff had to leave town for urgent business so I cannot meet with him tomorrow. I may stick around to meet with Dr. Vauthey instead on Friday.

Waiting it out in Houston

Christine and I decided to wait it out here in Houston. I can work remotely and the rest of the time, we'll just relax. I begin prep again Tuesday for a redo of the biopsy procedure on Wednesday.

I've been taking my blood pressure since Thursday and it has been normal, even a little high. Go figure. Seems that the pressure drop was indeed the combination of fluid loss and the medication.

Incidentally, with the fasting and prep on Wednesday, I lost six pounds in one day - eat your heart out Atkins devotees. (I've always said the cancer diet beats Atkins hands down... but I don't recommend it.)

Procedure delayed

I went through the unpleasant preparation for the colonoscopy last night and woke early for my appointment and procedure. Everything was normal up to the point where they were about to wheel me in for the procedure. The problem was that my blood pressure was quite low - as low as I had ever seen it (top number in the 70s). The anesthesiologist would not go forward with sedation due to the risks. As the two perplexed doctors, intern, and a couple of nurses discussed the issue, my blood pressure refused to go up and even decreased a bit more. At one particular moment, they became quite concerned because they thought that the gastric varices (the swollen blood vessels around the stomach that we knew about) could be bleeding. This would have been very bad. Christine and I just held hands trying to decipher their jargon-filled discussion. I offered to the team that I could start worrying and maybe my blood pressure would rise. Not everyone smiled. I think everyone's blood pressure was elevated at that moment but mine! They concluded their discussion saying that the likely cause was loss of fluids due to the prep combined with the medication I'm taking for the varices. They hydrated me with IV fluids for a while and the pressure did rise somewhat, but not enough for them to go forward with the procedure. I was directed to go off the varices medication and stay nearby tonight and then could go home tomorrow if I want.

They rescheduled the procedure for next Wednesday. So, we'll just have to wait another week to find out what this nodule is. Christine and I haven't decided yet whether it would be best for us to drive back for the weekend or stay through until the test next week. I'll keep you updated.

I am concerned about this week's developments, but have found myself able to persevere pretty well this week. It has been great spending some solid time with Christine, and she is a great support to me. And I think often of the many of you who are sticking right there with me. Thanks.

biopsy tomorrow

I am at MD Anderson for tests this week and unfortunately, the CT scan Monday showed a growing nodule in my lower abdomen. The nodule is 1.4x1.2cm wide and may be cancerous. So they scheduled for tomorrow a colonoscopy/ultrasound/biopsy procedure where they'll investigate further. It is at 11a.m. and requires general anesthesia. I'll try to post how the procedure went later tomorrow. Biopsy results will not be available until late Friday. My doctor said to consider this a bump on the long road. It is not a common place for my type of cancer to spread, so he did not want to speculate as to what is going on there.