The invader has officially been classified as a grade 4 astrocytoma, also known as a glioblastoma. It is the most aggressive kind of brain tumor. It has recruited blood vessels to help it grow.
If you look at the literature related to an inoperable glioblastoma, the outlook is grim. Dr. C told us, when asked, that some patients have about four to six months to live after diagnosis. But he also told us that they are treating Steve, not a statistical group or population. They are treating an otherwise healthy 39-year-old father of two, who until mid-December ran about 12 miles a week, who eats well, who doesn't drink or smoke.
The patients who do the best, he said, who outlast the statistical median of one year, are those who are engaged in life, who focus on family and good things. They don't sit and stare at a calendar.
We meet Monday with two doctors at UT-SW in Dallas -- a radiation oncologist and an oncologist who will carry out the treatment plan drawn by Dr. C and his team.
He'll need five to six weeks of radiation, targeted at the tumor.
The goals of the radiation:
Prevent the tumor from growing more
Improve Steve's symptoms
Reduce the bulk of the tumor
Along with radiation, Steve will begin a 42-day cycle of Temodar, an oral chemotherapy that he will take every night before bed. (I learned today that if we had to pay cash for the 42-day dose, we would owe almost $12,000. Instead, our insurance should cover the cost, minus our very low co-pay.)
We'll return to M.D. Anderson a few weeks after radiation therapy is complete for a scan to get an idea of how the tumor has responded. There's just this one course of radiation, but chemotherapy will continue on a schedule yet to be determined.
Possible side effects
If the radiation is doing its job, it will kill some of those awful tumor cells. When that happens, there will be some additional swelling, which will increase Steve's symptoms. The doctors will try to control the symptoms with the steroid he's taking.
As the treatment continues, fatigue will affect Steve. He also may experience nausea, though he'll have some preventive drugs.
One of the biggest risks is a reduced platelet count, which would make him much more susceptible to infection.
We are eager to meet with the team here that will help to take care of Steve the next few weeks. We look forward to a few weeks at home, with no planned overnight trips to hospitals. We are so ready to fight this tumor, bracing ourselves for the inevitable ups and downs associated with the treatment.
Steve and I talked today about one of the hidden gems in his brain cancer journey. There are more treasures in this awful situation than I could have imagined, and one of them is the blatant reminder that today is truly a blessing. When tomorrow comes -- wow, what a gift.
Now, don't get the idea that we dance around the house celebrating the Damm glioblastoma. Sometimes I'm surprised that we still have tears to shed. There's been a lot of uncontrollable sobbing. Fear grabs us throughout the day. The unpredictability of our schedules and routines has created more chaos than any of us are comfortable with.
Still, we know we are loved by God and by friends and family. And we have faith in miracles.