In His Own Words

Wednesday July 20th, 2011 was the last day of my proton radiation therapy.  This marks the end of my cancer treatment, though I still have a few check-ups and a lifetime of periodic MRIs ahead of me.  I couldn't have made it this far without the incredible support of all my friends and family, but there are a few people that I think deserve special recognition and thanks:

• My optometrist, Brian Wadman, who first noticed my swollen optic nerve and sent me for the MRI that revealed my tumor.
• My neurosurgeon, Ziv Williams, who evidently heeded my warning that my brain is about all I have going for me.
• My oncologist, David Ebb, who planned my treatment and kept a watchful eye over me throughout the ordeal.
• My nurse, Patti Scott, who would smile and laugh with me as she drew tube after tube of blood samples from my chest-port.
• My radiation oncologist, Shannon MacDonald, who was a match for my geekiness as she explained the inner workings of the MGH cyclotron.
• My mother Sally, who kept at work during this difficult time, providing the top-notch health insurance that allowed me to be treated.
• Most of all, my father Steve, who has been my roommate, nurse, chef, personal trainer, secretary, biographer, chauffeur, and friend during the worst 7 months of my life so far.

Orion

Orion finishes therapy

http://www.youtube.com/watch?v=3rUeLAF5HIw

Seven months of Chemotherapy and proton radiation brought us to this moment when Orion rings the end of therapy bell at the Burr Proton Therapy Center in the Yawkey Clinic of Massachusetts General Hospital.

All is well in the world again.

What You Can't See

Today marked 90% done with radiation, closing out our last full week of commuting to Boston's MGH and the Burr Proton Therapy Center. After radiation he was given his second audiogram. The results showed no hearing loss yet from the cancer treatments. Both proton radiation and chem can destroy the tiny hairs in our ear canals that sense the changes in air pressure that we call sound. This whole cancer thing is horrifying to a parent.

One of Orion's main chemo drugs was Carboplatin. He was administered this drug throughout the spring in three cycles.The last dose was about seventy days ago. Research tells us that 38 percent of carboplatin receiving patients suffer hearing loss beginning 135 days after end of treatment. A more recent article suggested 10-29%. At MGH they try very hard to prevent the things that get damaged so Orion was given sodium thiosulfate after carboplatin. This should prevent hearing loss. Two and a half months from now Orion will be in physics classes at grad school and the tale will be told.

The Man in the Polymer Mask

Here he lies, Orion, the man in the polymer mask. The mask allows for the exact and rigid positioning of his head for accurate and consistent proton radiation to the tumor bed. He cannot see what I saw. The nozzle to the right is fitted with three layers of material designed to shape the proton beam. There is a mask of machined brass that is shaped to fit the tumor boundary. There is a lead shield to shape the beam from a fusiform to a blunt leading edge, and finally you can see a Lexan mask that is contoured in thickness to shape the beam for impact on a 3D irregular surface.

As soon as he was done we watched the final Space Shuttle Atlantis lift off for its final flight. We both would rather be on it than here.

Bell of Freedom

Today at the Burr Proton Therapy Center we witnessed a touching scene, repeated twice. There is a ship's bell on the wall and when someone completes therapy they ring the bell. Just a few days ago I said to Orion that I did not think anyone ever did this, ring the bell OR finish. He scoffed at me as only he can. Today two patients rang the bell while we waited for Orion's turn under the ray gun.

Spontaneously every person in the room, perhaps twenty patients and family members, broke into spirited applause. Me too.

So twelve weekdays, twelve treatments from now, Orion will ring that bell. There will be video.