Half a year has passed since I posted my last report on my health. In brief (expanded below), I continued with another few cycles of carboplatin. About two months ago my feet started to burn, and I underwent testing to determine whether I have nerve damage (neuropathy) from the carboplatin (which I do), which would pose the question as to whether I should continue the treatments. But unfortunately, at the next NIH clinic visit where we would discuss this issue, it was discovered that my illness had progressed; specifically, a tumor in the cauda equina at the bottom of my spinal cord had grown. So… on to the next treatment. In two weeks I will start another round of radiation. Radiation was one of a number of treatments being considered, and given the possibilities, the one we dreaded the least. Hence, we are relieved that it's 'only' radiation!

So now to the details. The bottom line is above; the text below is my opportunity to ramble on about my medical problems like the old men in the gym's locker room.

As I mentioned, I was on carboplatin until about two months ago. The dosage was reduced so that the cycles were less difficult, and yet the tumors did not appear to progress. I settled into a routine of treatment, a few days of feeling punk, a decline in my blood counts, weekly blood tests, shots to boost the blood counts, a rise in my blood counts, treatment… A week without a visit to the oncologist was a vacation.

However, about the time of my last treatment my feet started to burn, which is a classic symptom of neuropathy from carboplatin. On to testing!

To determine whether I had neuropathy I was sent for a nerve conductance test. This is where a doctor connected one electrode to my foot, another to various parts of my lower leg, and then… zap! But don't worry, there was also a ground electrode taped to my skin. In most cases the electrode was on the surface of the skin, but in some cases an electrode was stuck into the muscle. The test determined how fast a signal propagated along the nerve fibers, and how strong was the signal. The doctor administering the test kindly explained what he was testing: nerve fibers that carry signals from the spine to the muscles, nerve fibers that carry signals from different types of sensory cells to the spine, the dendrites that stimulate the muscle fibers. It was as if an expert was showing a colleague how to test a type of equipment (now, see, if you put the electrode on the finger, you only test the sensory nerves because there are no muscles in the fingers…). Except that my limbs were those pieces of equipment. Although the doctor was watching the signal on a computer screen, he also fed the signal to a loudspeaker. So, every zap was accompanied by a loud click that reverberated through the small room.

And the verdict: the measured neuropathy is worse than what I feel. Great! I love hearing that I am functioning better than I should be.

I also had a hearing test at NIH. The basic test is quite common: beeps at different pitches and intensities are fed into each ear, and the subject pushes a button on a hand-held clicker when he/she hears it. If you are into video games this is merely an unimaginative game. There's an alien, push the button, zap! But I find this type of test stressful. Was that a beep? If I missed it, will they mistakenly think I have a problem? But they had a number of other rather fascinating tests for different parts of the ear. In one, they bounced sound pulses off different parts of my inner ear (a coiled tube of water with sensory cilia that respond to different pitches). I think I received extra attention because of my interest (see, that's the noise and that's the signal…).

Enough of this physics stuff-what about the patient? The neuropathy should be reversible without additional carboplatin. And my hearing is normal for a 50 year old; perhaps with a small decrease at high pitch, beyond the normal range. In general the burning in my feet increases as the day progresses, and seems to be exacerbated by sitting, particularly by pressure on the underside of my thighs. I continue to have numbness below my waist, particularly in my feet, without any loss of sensation or function. My legs also feel a bit heavy, even at the beginning of the day.

Thus testing showed that I have neuropathy, although not yet resulting in permanent impairment. So a month ago we went into my regular NIH clinic visit expecting to discuss whether to continue the carboplatin: neuropathy vs. apparent suppression of the tumors. However, the MRIs showed that the tumor at the lower end of my spinal cord, which had been identified as likely causing the numbness below my waist, had clear grown. This tumor is technically not in my spinal cord but in the loose bundle that looks like a horse's tail (hence the term cauda equina). So the decision whether to continue with the carboplatin was made.

Various treatments were broached, pending further testing. I will not go into details now-these treatments may have to be considered in the future-but this summer promised to be unpleasant. The least intrusive treatment considered was radiation. And ten days ago we decided that radiation was the logical treatment. I start in two weeks. Since I have been irradiated three times already, with relatively few side effects, we are relieved that it's 'only' radiation! Later I will write about the radiation.

So how are we taking this progression? I had always expected that there will be progression, but of course hoped that it would be sometimes in the mists of the future. So I was disappointed but not surprised. Debbie had hoped that the carboplatin would be effective for the foreseeable future-forever? So she is more shocked than I am. But I find the uncertainty and magnitude of further treatment to be jarring when I am functioning relatively normally, albeit with burning feet. The best adjective is surreal.

Unfortunately, more later.