Obviously I was unable to work after the initial presentation of the tumor in February. I was placed on short-term disability, which in itself was remarkable, as I had only been with my employer for six weeks when this story began. Luckily I had negotiated that my benefits package would be effective from the very first day of my employment. However, after six months, I would have to transfer to the LTD plan provided by the group life insurance company. I started to return to work on a part-time basis in June, and quickly transitioned to full-time by the end of August. I was on LTD for a total of one week, at the suggestion of my employer, as it would apparently negate the requirement for an elimination period if I had to quit work again.
We badly needed to take a break from all this brain tumor stuff, as the whole family was under a great deal of stress. In order to make ends meet, I had partially collapsed my retirement plan. We were thus able to fly to California in late June to stay for a few weeks with my wife’s brother and his wife. They live in the ski resort town of Wrightwood, where he works at an astronomical observatory. We took a trip to Yosemite Park, with my brother-in-law and his wife, and a side trip on our own to Flagstaff, AZ. I even drove part of the way to Flagstaff, through the Mojave Desert on old route 66, from Ludlow, CA. This was the most driving I’d done since the day this story began. We also spent time at Disneyland, as well as Laguna Beach. Since July 4th fell during our stay, we also participated in the Independence Day festivities in Wrightwood.
As I mentioned, I returned to work full-time in August of 1997. My chemo treatments didn’t finish until February of 1998. Throughout that time I had periodic MRI scans and visits with Dr Mason. A remarkable thing happened. By the time I finished the seventh round of CCNU, it was obvious that the tumor was responding to treatment. In February, we made the decision to watch and wait. At first I had an appointment and scan every six weeks. After a few months we switched to quarterly follow-ups. The tumor continued to shrink. When Christmas 1998 rolled around, the tumor was no longer evident on my MRI scan. We were elated. Every MRI scan since has been the same. I am clearly one of the lucky few who have a complete response to conventional treatment. Even more lucky when you consider that I had no resection or debulking of my tumor.
This is a slice from an MRI scan done in August 1999. Thankfully not much has changed since. The arrow is points to the location of the biopsy.
I started to look for reasons why I seemed to be so lucky. Maybe I was misdiagnosed. After all, I had only a biopsy, which might well have missed the most representative part of the tumor. But on the other hand, if any part of my tumor was GBM, as the pathologist reported, then the whole tumor is treated as such. Maybe the biopsy had missed an oligodendroglioma component in my tumor. It has been shown that some oligos respond very well to chemo treatment. In fact there has recently been research published that suggests that there may be a genetic reason for the fact that some oligos respond so well. Current research is looking for similar predictors in Glioblastoma. For that reason, I was recently asked to provide a blood sample for use in a genetic study being conducted in Boston by Dr. David Louis.
It is thought by some that pre-cancerous lesions are present in all of us from time to time. A healthy immune system is able to keep these in check. However, if the immune system becomes compromised due to some environmental insult, or due to stress, then previously accumulated genetic damage may result in a cancer growing unchecked by our natural immune response. Looking back on recent history, 1995 was an extremely stressful time for me at work. Eventually, in January 1996, I was fired by a former employer, without cause, and spent several months looking for a suitable replacement job. I believe that it’s no accident that very close to a year after the day I was let go, the tumor reared its ugly head.