A more optimistic perspective

Today was Steve's follow-up visit at UT-SW. He had another MRI, more blood drawn (it took multiple sticks to get a good sample -- his veins are usually difficult but especially so now after so many recent sticks and cancer-related treatment) and a lengthy visit with Dr. M, his Dallas neuro-oncologist.

Dr. C in Houston was cautiously optimistic, which matches his general demeanor. Dr. M was much more enthusiastic, which also matches her personality and approach. She believes that the tumor may be dying altogether, that the image we see on the scan may be dying cancer cells. That, of course, is over-the-top, unexpected great news -- if it's true. We are slightly puzzled, though, about what to do with her reading. It's much more optimistic than Dr. C's analysis, which indicated cell death in the middle of the tumor and the remote possibility of the tumor shrinking over time.

One reason we are letting M.D. Anderson direct care is because of our comfort level with their aggressive approach. Their doctors seem more proactive from the outset. For instance, adding Accutane to the Temodar so early in treatment isn't routinely prescribed at UT-SW. Dr. M seemed surprised that Dr. C recommended the double dose of Temodar and the seven days on, seven days off approach and said that that was more aggressive than she would have prescribed.

All of that is background to explain why we're having trouble reconciling Dr. M's reading with Dr. C's reading. We trust Dr. C's plan of action, therefore we tend to trust his reading. But Dr. M's analysis is better news, and who doesn't want to latch onto and celebrate that? As we're learning throughout this process, there is seldom a definite answer to any one question. We both have faith, though, that this journey has a purpose.

As Steve has stepped down on the Decadron the past few days (down to 2 mg), his gait, left-side funtion and voice have suffered once again. He's returning to 4 mg today and will stick with that for a week, then drop to 3 mg and hold there for at least a couple of weeks. As the brain is healing, Dr. M explained, it's dealing with a lot of extra debris that continues to cause swelling-related symptoms. That could take months to resolve, so Steve may continue his love-hate relationship with the drug that allows him to function but also weakens his muscles and adds some extra padding to his face, neck and belly.

He hasn't taken Tylenol since Friday! The Diamox, which is supposed to reduce the production of spinal column fluid and the pain in the back of his head, seems to be working. His head pain is at a 1-2 on a scale of 1 to 10, which he considers manageable.

Our awesome health insurance approved Provigil (the energy booster) right away, so we paid $50 for a month's supply. We hope that good luck continues next month. He's been taking it since Tuesday and has noticed a slight improvement in his fatigue level. He's confident that will continue to improve.

Steve will begin taking the next round of Temodar (with all its Dr. C-prescribed additions) and the first round of Accutane (five times the dose normally prescribed for acne) on Monday. Once again, our amazing support group has come through, this time with all kinds of suggestions on combating dry skin related to Accutane.

Recap:

• Dr. M believes the whole tumor may be dying.
• We love that news and yet struggle to reconcile her analysis with Dr. C's.
• Steve's swelling-related symptoms are back, so he's increasing the Decadron again -- 4 mg daily.
• Temodar and Accutane (plus some other drugs) begin their work on Monday.