Whoa - I went back and looked at my last entry, June 10, 2010. Whew, quite awhile ago I must say. A lot has happened, and yet not so much as you might think. My, our, lives are pretty filled with my illness and all the surrounding hoopla it entails. In July we traveled back and forth to USC and Kaiser; the same for August, September, October and November. We also managed to file for my driver's license to be renewed and kept up the MRI struggle. Who will pay for it and the never ending battles with the insurance companies.
For instance, Kaiser requires me to have an MRI every two months. The NovoCure study also requires me to have an MRI every two months. Simple, right, have my medical insurance cover the cost. Aha, not so simple. It seems that USC, because of their study, requires the MRI they need be performed at USC. OK. I contacted Kaiser and requested that my insurance cover the cost of the MRI. This took a long while, several dozen telephone calls and a mini telephone hearing. Just to be told that Kaiser would not cover the cost of a procedure they could perform at their own hospital. This went on for several weeks and eventually it was resolved by having Kaiser recalibrate their machine to the USC required specs. So, I'm now getting all my MRIs done at Kaiser.
Oh, and can you believe it, I am actually being sued for the damage I caused to the telephone pole and the repair time it took to fix it. The total was about $9,000.00. But what do you think my insurance company told me when they got the claim? "Well, we are expecting to deny the claim. You didn't know you had a brain tumor, did you? Where's the negligence?"
Of course there was no negligence, but my position is very simple, "I didn't pay insurance for all these years just to have lawyers fight over a pittance of $9,000.00 and then sock it to their employers for the attorney's fees. And, although I have nothing against attorneys, some are my best friends, it does seem a bit silly to be paying them for such frivolous shit as this. And that is whether they are on the staff hourly or if they get paid when they win. In any case, it is just another example of why our insurance rates are so high. Thank the Republicans for that one.
In the mean time, we have been getting out and doing as much as we can. We spent two weekends in Inverness at Nora's mom's cabin. The first while she was there and the second just the two of us. That was beautiful.
We went to Ashland for a week and saw several plays, ate and walked around. I also picked up an 8 string Ukulele. Actually it was a birthday gift from Al and Pam.
Then, of course, we can't forget the week we spent in Hawaii. We took Nate there to enroll him at the University of Hawaii. Again, we did a lot of eating, walking, driving around the island and sitting on the beaches and don't think we didn't go swimming. It seems that I am allowed to add up the hours for how long I can go without the NovoCure device attached. So, if the desired amount of time is 85% and that means I have about 3.4 hours per day to add up. So, if my actual time is about 95% that means I am getting to add up 2.8 hours for every day that I have the device on, which means that if I had it on for 3 months, 30 X 2.8 = 84 hours of off time while we were in Hawaii. And, I definitely took advantage of such time.
We also went skydiving! What a rush, but nevertheless, it was not the type of rush you, who have never done it before, would think. I promised Nate that on his 18th birthday I would go skydiving with him. Well, his 18th birthday was October 17th and he, I and 7 of his friends went to the Yolo County airport and in three different trips we all jumped out of a plane. Let me explain the divergence with the commonly held belief of gripping fear as one jumps from a perfectly good airplane. As I sat on the ledge of the open doorway, with the wing on my right side and the spinning prop just beyond it, I only had a few seconds to (not at all long enough) take in the magnificence of the view. Below me stretched out as far as I could see was this checker board of farm fields. Each square or something approximating a square differed in color from dark green, shades of yellow, to rust, to grey and various tints of blue. You don't have the feeling like you're moving as fast as you really are when all of a sudden you start to fall. ONE HUNDRED AND THIRTY MILES AN HOUR down toward those patches of multi-colored squares. But, the amazing thing is, you don't feel the speed. Even though we did it on a bad weather day, little ice pellets hitting us in the face as we zoomed through them, the rate of our fall just seemed to be so natural and so simple and amazingly peaceful. Not until we were about a couple of hundred feet from our landing did I realize just how fast we were moving, then the canopy pulled up and we came to a near perfect landing. I will go again!
I managed to get my license reactivated, so, although I don't have auto insurance at least I can drive legally in an emergency. I can't believe how debilitating it is to be relying on others for transportation. It just started to wear on me night and day. Although it wasn't easy, the bureaucracy was so incredibly stifling, nonsensical and boorish, but nevertheless, through perseverance and a lot of sweet talking I got it accomplished.
We had Thanksgiving Dinner at our neighbor's, the Provost's home, then again at my brother's the next day and then on Saturday we had still another dinner at Al and Pam's ranch. Thanksgiving was well covered.
Now, we are in a situation where I disagree with my doctors. It seems that one of my MRIs showed a bit of new growth in the tumor area. This could be tumor or it could be dead tissue. In either case, it is not good. We had several MRIs and MRSs to try and explain the discrepancy between what I saw in the images and what the doctors saw in the images. I don't want to sound as if I know more about these matters than the doctors, but the one thing I do have going for me is an incredible sense of why people do what they do, see what they see and say what they say. For instance, in this case the MRI conducted in early September was read by the person in the MRI room and it was written in his report that the tumor showed possible new growth that was consistent with new tumor growth, but that growth of necrotic tissue can't be ruled out. From that point on everyone simply reported what the first person wrote in the report and the necrotic suggestion and especially that part where it said "possible new growth" sort of dwindled away until we were dealing with scheduling surgery. OK, I wanted more clarification. My surgeon requested an MRS to be performed. This would be a 90 minute procedure, like the MRI, only it produces a spectrograph, which is good for comparing types of tissue but not size. The MRI is good for size but not discerning between tissue types. The day after the test my surgeon called and said it showed the tissue to be cancerous. Not good. That was on a Wednesday. Then on Friday he called back and said a panel of three experts examined the images produced by the MRS and concluded that it was more consistent with necrotic tissue growth. Good news!
Nevertheless, we had so many experts saying that they saw some growth that surgery seemed imminent. Of course, they won't tell you unless you ask the exact question in just the right way, but surgery is not the best of things to simply jump into. Each time they open up my skull and remove a part of my brain, there is always the likelihood of me not coming out of the surgery as well as I did this time. It would be like starting over again. Remember, the doctor told me that in all likelihood I would lose some speech, memory, use of my limbs or even sight. He then told Nora not to expect me to be the same as I was before the accident and that I probably would be confined to the hospital for a long period of time and might even die. Now, unless you knew to ask the right question, you might go into this thing with the belief that you would come out the same as you did the first time. Wrong. Each time is like starting over, again.
What all this meant was that I had to try and avoid surgery until I was certain it was necessary. See, I believe that the MRI performed in June, to which they compared the September one with, was always a bit flawed. Then the subsequent ones were newly enhanced because of the new calibrations (USC requirements). The amount of growth, or thickening as my surgeon says, is rather minuscule in degree. So, there are several possibilities. One is that it was the enhanced version that caused the difference; two is that it is a picture taken at just a split difference in my brain; three is that it doesn't seem to be effecting me at this moment so why go in to resect?
I have chosen to wait, to take the Avastin and see if it will have an affect on the tumor/necrotic tissue growth. I also asked the nurse administering the Avastin, on a whim, if she had administered Avastin very often and she said yes, "It's one of the main drugs available." I then asked her how often and she could not tell me, but said she had worked at Kaiser for about 20 years, that Avastin came on to the market about 6 years ago and that although they have to tell people that one of the possible side effects is hemorrhaging of the brain. She added that she had experience with only one case and it turned out not to be caused by the Avastin. However, if I started to hemorrhage in the brain, the prognosis would not be good, in fact it would probably be death.
As of today, I have taken two Avastin infusions, they take about 30 minutes and no side effects other than the possibility of the hemorrhaging. Now, I am waiting for my next MRI, which will be on the 15th of December. From there we will know, or be able to decide whether we schedule surgery or if the growth has been checked.
Oh, and yes I am on a regimen of chemotherapy. Twenty-three days off and five on. It consists of taking two pills each day of the five days, and sometimes it makes me quite ill to my stomach for a few days after, and creates a bit of lethargy that seems to linger for a few days. Other than that, it doesn't have any real side effects, but believe me, it is poison and you wouldn't want to be taking it for the long term. I have now been on it for about 10 months.
Well, that should bring us up to date. I need to get this posted, it is getting a bit late. I'll try and write more frequently, I promise.
Lenny I WILL BEAT THIS
