One of the most memorable rhymes penned by lyricist Ira Gershwin pairs the words “maybe Tuesday” with the phrase “my good news day.” Well there were no maybes attached to this particular Tuesday. For me, it was an unqualified good news day.
For the third consecutive time since early December, an MRI scan of my brain showed no progression of disease. My chemotherapy regimen continues to keep the GBM cancer in check. The combination of the drugs Irinotecan and Avastin is working so well, in fact, that my neuro-oncologist has decided to cut back on the frequency of my chemo infusions — from once every two weeks to once every three weeks. That’s huge news for me. Basically, it will give me lots more time to recover from the debilitating side-effects that wipe me out after each infusion. And while I’m at it, I’ll get time to enjoy each precious day of life ven more than I am now.
“Your scan is good,” said Dr. George Bobustuc. “All in all, it is very, very good.”
My day began when my brother, Brian, drove me to Orlando Regional Medical Center to report for the MRI
scan at 7:30 a.m. The first part of the scan was the straight-up imaging of the brain,, followed by a second series of snapshots taken after I was injected with a contrasting dye to highlight areas of enhancement indicating the presence of tumor cells. For whatever reason, my blood vessels weren’t cooperating with the IV needle at first, and it took the MRI technicians six tries to find a vein that would accept the dye injection. They were mortified that they had to stick me so many times to get it to work. But as I told them, I didn’t mind the pain too much because pain is generally a good indicator that one isn’t dead yet. So as far as I was concerned, my day was already off to a good start.
There was only one caveat in Dr. Bobustuc’s report once he had finished reviewing the results of the brain scan. He said the imagery indicated there had been been a small hemorrhage in the area of my chemo-besieged brain tumor sometime after my previous scan on January 4. That, he said, was an effect of the Avastin part of my chemotherapy. If given in far stronger doses than I’m getting, Avastin can cause severe internal bleeding problems. As much as that particular side effect might piss off the folks at the U.S. Food and Drug Administration, the hemorrhage was so small in my case that Dr. B expects it to heal itself and be absorbed to the point of invisibility by the time I get my next scan in another couple months. In other words, he assured me, don’t be overly concerned about it because it’s a sign the drugs are working exactly as they are supposed to be. And of course, no one ever said killing cancer is supposed to be pretty. And as long as I can expect this treatment regime to keep me alive at least through the end of this year, and perhaps for many more years to come, what’s a little brain hemorrhage between friends?
Dr. Bobustuc said something else that stuck with me long after I left his office. He told me to make it a goal to not even think about my brain tumor for two full days out of each week. I really like that prescription. It means I’m making progress. Maybe, if I keep it up, I could take that advice even further – and eventually someday will come along when I’ll have whittled my “thinking-about-my-brain-tumor-time” to just one day each week.
Maybe I will make it Tuesdays.
I promised that I’d keep everyone posted on the fate of those 1,000 origami cranes I received last November from an extremely caring and generous group of strangers in Palm Beach County. In case you don’t remember, they heard about my situation via this blog and just decided they wanted to do something to help me get better. So they got together and folded 1,000 origami cranes for me — in accordance with a Japanese legend that says such a gesture will help sick people heal. Such a collection of cranes is known as a Senbazuru. Part of the tradition goes back to a group of Japanese schoolchildren who made a Senbazuru for a young girl who contracted leukemia after surviving the 1945 atomic bomb attack on Hiroshima. For more background, read this blog entry.
Well, I knew I couldn’t keep such a wonderful thing all to myself. I wanted to share it somehow with my fellow patients at MD Anderson Cancer Center here in Orlando, in order to pay the gift forward and maybe help them heal, too. My first idea was to ask a well-known Orlando artist to create a giant mobile sculpture so that all 1,000 cranes could hang together in the atrium of the hospital’s main lobby. But that idea for the cranes didn’t fly, because the hospital had fire-safety concerns.
My next idea was to pass the cranes along, one-by-one, in envelopes addressed to other patients, along with a personal letter from me explaining where they came from and what they meant. The hospital approved that plan, so I got busy writing the letter, getting 1,000 copies made and getting 1,000 envelopes printed up at Sir Speedy Printing. The video slideshow here explains what happened after that, when a group of my friends got together Feb. 5 at my house in Orlando to do the work of enclosing a single origami crane in each envelope. Thus was the circle completed: Strangers helping me heal, and then my friends helping me help other strangers heal. (Click Play button on image below to view slideshow).
I delivered all the envelopes to the hospital last Wednesday, and by the time I went for my chemotherapy infusion on Thursday they were already set out in trays on various patient check-in counters. I was also told that many of the medical oncologists at M.D. Anderson asked for envelopes in order to hand them out personally to their patients. I love the way this all turned out. I hope you do, too.