The little buggers are on the run!

I had my second PET scan on Monday, a follow-up diagnostic test just like the one I had in mid-June. This one was administered to measure the effects of my first six weeks of chemotherapy.

The procedure started with an intravenous infusion of radioactive glucose and a large drink of barium sulfate. Then I sat for about an hour while my body took up the fluids.

Next step was a CT scan. I lay on my back on a table that slides into a huge, space-age looking device. If you’ve never encountered such a machine, in person or on the likes of Grey’s Anatomy, this very imposing piece of equipment is a large, round, open-ended tunnel that projects x-rays toward you as you slide slowly through it. Unlike a simple x-ray machine, it records a series of images that present a three-dimensional view of the subject’s insides. It’s not painful or particularly uncomfortable. You simply lie still as the table slides to the proper positions to photograph what the doctor wants to see. This procedure took another hour, as they scanned my entire body, head to toe. A trained radiologist later reviewed the recorded images.

All cells consume glucose, but malignant cells are particularly greedy. They have a higher rate of metabolism than normal cells, so gobble up the glucose voraciously, and in the process, they light up from the radioactive substance. The radiologist looks for these metabolic “hot spots” to determine where tumors are growing.

In June, they identified about ten tiny nodules. This wasn’t a lot of cancer, either in size or amount. The largest tumor was less than two centimeters. Two months later, this past Monday, there were no hot spots at all! All the glucose was taken up equally. There were no visible pinpoints of light in the PET portion of the scan.

So where did they go? Well, the tumors are still there. They are dead and dying, but my body hasn’t fully absorbed or flushed them. They show up on the CT images as dull concentrations of cells, but there is nothing “hot” to be found.

I met with my oncologist this morning. She is very excited about these results. Needless to say, I am also. She tells me that when patients respond to this treatment in this manner, they respond “completely.” They go into remission “forever.”

Those are actually hard words to hear. I’ve been so very anxious the past few weeks, increasingly so as the date for the PET scan approached. I’ve been preparing myself for the best possible outcome, but I also have experience being blindsided. Twice, cancer fell out of the sky and took over my life. Twice, I got phone calls informing me I had melanoma I had no suspicion was there. At the same time I felt that my body was strong and healing, I was afraid to ignore the possibility of unwanted results.

“And how long is forever?” I asked, cautiously optimistic. After all, I was cancer-free for five years until this spring.

“Eight years,” the extent of the research so far with this clinical trial. Patients continue to get scanned once a year, but so far, their cancer hasn’t returned.

Where to next?

This coming Monday I’ll start the second treatment cycle. Another six weeks of drugs, starting with a weeklong infusion of Genasense. Genasense is the experimental drug that acts as a sensitizing agent. It alters the melanoma’s DNA so it’s no longer programmed to live and grow forever. In its weakened state, the melanoma is very susceptible to the killing power of the Abraxane infusion that ends the first week.

I will undergo at least two more entire treatment cycles and possibly a third; that’s another four to six months of managing side effects and missing my hair. On the positive side, the treatment is moving in the right direction, and I feel about a hundred pounds lighter!

Ironic

The medical team I’ve amassed is amazing. World class! Apart from their impressive abilities, they’ve been very kind, considerate, and compassionate. I frequently see several nurses, phlebotomists, surgeons, radiologists, a dermatologist, an internist, and most amazing of all, my oncologist. The administrative staff is likewise, attentive and competent. I’m on a first name basis with many of those I see regularly, and they all treat me with thoughtfulness and respect.

In all my comings and goings through the Hospital and the Cancer Center, I’ve had only one interaction that offended me. That was with, of all people, a Patient Advocate!

“What is a Patient Advocate?” I wondered when she introduced herself to me. I’d never met one before, but she was walking up and down the line of waiting room patients, asking if and how she could be of help.

I was sitting in a hallway, drinking a none-too-tasty bottle of chalky barium sulfate in preparation for a CT scan. I’d brought my computer with me and was working during my hour-long wait.

She explained that she worked for the hospital and was tasked to see that patients’ needs were met. I thanked her and told her I didn’t need anything.

“I see you’ve found our electric outlets though,” she said.

“I shouldn’t use it?” I asked, somewhat incredulous.

“I wouldn’t,” she said stiffly.

So much for patient needs. For a few cents worth of electricity, she’d made me feel small, a petty thief. I wish I’d thought to suggest she tack the ten cents onto my bill of many hundreds of dollars for the procedure.

I believe this imperious woman had fleshed out her vigilante task on her own. But it’s clear that some positions are simply, by definition, a conflict of interest. How can someone who works for an organization adequately represent the needs of those who are clients of that organization? Where does the loyalty lie when the two parties’ needs appear to be at odds?

Patient Advocate is not, after all, a sincere task. It's another euphemism for butt coverage. It’s simply a matter of keeping up appearances of attentiveness in order to keep out of legal hot water. It’s akin to the conundrum of “managed care” imposed by health insurance companies. “Care” is the name they give, but cost containment is the game they play. Those two goals are very much at odds and frequently mutually exclusive.

The insurance companies play for bigger stakes, but a Patient Advocate, I've found, can still mess with your mind.