Updates From Dave

April 30 we had an appointment with the Doctor, and I e-mailed the pair of them, saying unless they requested I bring her in, I was going to spare Kibby the trauma of a trip to the clinic, but I wanted to keep the appointment and discuss 4 questions that I listed. The first question was why the radiation oncologist characterized the results of the comparison of the Jan. 30 and March 26 MRI’s as a demonstration of “above average progress” while her condition continues to worsen. The new Dr. kept the appointment but denied my request to review the MRI, saying “I’m not going to get into that” and characterizing it as “ancient history.” This man has a condescending manner (at least with me), and there had been friction between us in our two earlier meetings. At one point I asked him if Kibby’s treatment had been a failure, or if we were still within the realm of a longer more difficult recovery than we had expected. He refused to answer, and our exchanges were getting progressively sharper. When I brought up the interpretaion of the MRI for the third time, he responded, “I told you…,” and he did indeed repeat something he had said before but added something new. He had said before that small changes in the tumor could have large effects, but now he added that they may not show up on the MRI. So I said, “Well you didn’t tell me that before, but you’ve told me now.” To which he responded, “Then you, sir, should have been taking notes.” This was our third meeting, and I have had a pen and pad every time. Well condescension is my hot point anyway, and I completely lost my temper, said “F**k you” and stormed out of the office.

I was so afraid that I’d let my temper cost Kibby treatment either by the “good” Dr. or at Vanderbilt altogether, that it made me sick at my stomach, and I was going to call the “good” Dr. and beg, but he beat me to it. The next night he called me at home. He even called twice because I had gotten home yet when he first called, and he called back. Because I had questioned the MRI results he looked at it again and saw something we hadn’t been told about. Now I misspoke when I said in an earlier update that the March MRI showed the tumor was shrinking. It was the same size as in the earlier MRI, but was more diffuse, indicating that it was breaking up. Well the “good” Dr. has been a patient educator and explained that dye is injected into the area being examined, and the dye accumulates more in diseased cells than it does in healthy cells. So the diseased cells show up as more opaque than healthy cells on the MRI film. Also the MRI shows horizontal slices from top to bottom, so you can get a 3D picture. The slice we were shown appeared to be where the diameter of the tumor is greatest. But now the “good” Dr. has also looked at lower slices that showed the lower parts of the brain stem, and he sees that these slices show an increase in opaque areas. Therefore the tumor is growing again down into the brain stem. Now this is consistent with the degradation in Kibby’s condition. She can’t move her legs at all any more and has a much harder time controlling her head with her neck muscles and has more trouble swallowing. Information remains the most powerful commodity.

The condition of Alive Hospice’s presence is that there can be no active treatment (other than drugs) ongoing. Kibby will see a nurse once or twice a week. I’ll find out tomorrow and pursue more effective treatment of her sore throat. She’ll also see an aide twice a week who will help with bathing her and changing bed sheets, etc. Also the “good” Dr. encouraged me to contact him with any questions, and next week I will. I had told the “new” Dr. that in my position I was bombarded with stories of cures of brain stem tumors at hospitals elsewhere in the U.S. and in other countries, and was given the brusque response, “If I knew of a place where you could get better treatment, that’s where I’d be sending you.” I’ll put this question to the “good” Dr. again to see if there are any reasonable possiblities. Because of the forthrightness of the “good” Dr. we knew this was an aggressive tumor from the beginning, so I do not expect a positive answer. I also want to know if the Dr. can provide an estimate of time left and a rate and manner of further decline. If he cannot with any certainty give me this information, I expect him to say, “I don’t know,” and I will admire him no less for saying so. I didn’t want to write this update, but you all have been so giving and loving that you deserve no less. Joke of the Day: How do you know when it’s bed time at Michael Jackson’s ranch? When the big hand touches the little hand.