Today is 124 days since my second surgery at Duke. I'm doing very well. The Lord takes care of me day to day. I'm a trim 177 lbs., skinny but not emaciated by any means, though down from my weight a year ago of 190 lbs. My nutritional habits have changed so much I'm not surprised my healthy weight has changed. Still my family wants me to put weight on.
My energy is good. I exercise just about everyday. I have no pain concerns, occasionally I'll get minor and temporary scalp and / or skull pain. My incision continues to heal well. I'm still seizure free since leaving Duke!
June 25th, I had an appointment at SUNY Medical University in Syracuse, NY with radiation oncologist Dr. S. Before discussing my MRIs and course of treatment, I aced my neurological exam (balance, coordination, strength, etc.).
Dr. S. is convinced the ovid of enhancement is definitely a recurrent tumor (new cancer) and recommends 2 phases of radiation treatment.
The first phase is the "Gamma Knife" which is a very specialized radiosurgery device where very thin and focused beams of gamma radiation are directed at the tumor from many angles, killing the recurrent tumor. (My original tumor was too large for the Gamma Knife).
The second phase of radiation treatment would be 6 weeks of daily radiation (Monday - Friday everyday). Radiation would be directed at this right frontal area of my brain in a broader beam than the gamma knife. The idea is to radiate a margin around the recurrent tumor. This radiation would kill the cancer cells that have "infiltrated" the good brain tissue.
Its been explained to me that my type of brain cancer in infiltrative. Brain cells are long and spidery and grow like tree roots. The cancerous cells are intertwined with good cells.
Dr. S. used metaphor of a stump sprouting to explain recurrent tumors. The tumor that was removed at Duke was like a tree, but the stump and the roots were left behind to spare me brain damage. Now like a tree resprouts from its stump, the tumor is growing back from the residual tumor cells.
Dr. S. felt I should start radiation immediately while the recurrrent tumor is still small. She said the ovoid in question is so small that it probably would not even show up on a PET scan or MRI Spectroscopy. She said if I refuse to take radiation now I should set up an MRI by the end of July to monitor the questionable spot.
I have decided not to get radiation at this time. My next MRI is not yet scheduled.
Soon I will type in some notes from my consulatation visit with radiation ocology in Syracuse.
visit to specialist 6-11:
Dr. C is also suspicious of this small bad spot on the 6-2 MRI and definitely wants to keep an eye on it.
Advises me to get more info on radiation treatments.
He is encouraged by my overall physical health and mental function. Thinks mostly the recent MRI looks very good and that I should be optimistic. Advises I get another MRI in 3 mos.
It's been 3 1/2 months since I left Duke Hospital. My body has made a huge recovery in terms of strength and stamina. Thank the Lord.
On June 2, I had an MRI which is the typical checking point at the 3 month stage to see what is going on inside:
Results are mixed:
Good News is that blood residue and scar tissue do not apear to be a problem. I think also that as my brain moves about to adjust to the space left by the tumor removal - all that readjustment is going fine.
I'm feeling pretty good. However the MRI did find a "1 cm ovoid . . . worrisome for recurrent tumor". This is very serious and I definitely appreciate your continued prayers.